✉️ Connect with dd (David)
 Email: daviddenborough@dulwichcentre.com.au

Power to Our Journeys
Learn more about the Power to Our Journeys group 
 https://dulwichcentre.com.au/wp-content/uploads/2021/12/Power-to-Our-Journeys-by-Brigitte-Sue-Mim-and-Veronika-1.pdf

Explore the Dulwich Centre
The home of narrative therapy + so many great resources
 www.dulwichcentre.com.au

Free course: What is narrative practice?
Curious about narrative therapy? Take a look at this free introduction course:
 https://dulwichcentre.com.au/courses/what-is-narrative-practice-a-free-course/

“Sneaky Poo” + understanding tricky thoughts
Looking at externalisation 
 https://dulwichcentre.com.au/in-our-own-wayshttps://dulwichcentre.com.au/beating-sneaky-poo-2.pdf

Stories from around the world
Including the CARE Counsellors of Malawi + the “Bundle of Sticks”
 https://dulwichcentre.com.au/in-our-own-ways

Come and listen with:

Lucy (She/Her) – A big fan of ice cream and storytelling

Rachel (She/Her) – Social Worker, Dialogical Practitioner, mad footy fan and wildly passionate about transforming the culture of mental health services to be person-led and human rights informed.

 Incredible artwork @sharleencu_art

 Shout out to Amplify for welcoming us into their recording studio

EPISODE TRANSCRIPT – Power To Our Journeys

[00:00:00] Lucy: This podcast has conversations around different mental health experiences that may be distressing for some people. If that doesn’t feel like something you want to explore today, you might want to visit another podcast and come back to us another time.

[00:00:13] Rachel: discovery college acknowledges the traditional owners of country throughout Australia and recognises their continuing connection to lands, waters and community. We pay our respects to Aboriginal and Torres Strait Islander cultures and to the elders, past and present. They have never ceded sovereignty.

[00:00:31] David: Sometimes when I’m in stressful situations and the voices are playing up, having the sticks next to me is really significant. They make me think of the people of Malawi overcoming enormous obstacles in their battles with HIV aids and they give me courage to keep going.

They remind me that when you’re up against something very big, then it’s important to take things just one step at a time. They reconnect me to the importance of every little thing, how every small stick is important, because it’s together we are strong.

[00:01:10] Lucy: I’m Lucy

[00:01:10] Rachel: And I’m Rachel and we’re the hosts of the Extremely Human podcast.

[00:01:14] Lucy: Sometimes we move through big human experiences that others might not understand, like psychosis, grief, addiction, euphoria, or moments that feel completely unreal.

[00:01:26] Rachel: On Extremely Human, we hear from people who’ve been there and share what they’ve learnt along the way. Together we ask, how can we meet the full range of human experience with kindness and compassion?

What is narrative therapy and how did it begin? We’re joined by David Denborough, who shares the history of narrative practices, the difference they can make in people’s lives and the story of a beautiful group called Power to Our Journeys.

[00:02:06] Lucy: Today we are still in Adelaide. We’re doing a few episodes in Adelaide and today we are joined by David: Denborough, who is actually Paul Denborough’s brother, who we had on an earlier episode. This is the episode  is: Is this really radical? Check it out if you haven’t. We now have his wonderful brother, David Denborough, also known as dd. Welcome and thank you for joining us.

[00:02:28] David: It’s very nice to be here. I enjoyed the episode with Paul very much when it came out some time ago, and I’m very glad you’re here in Adelaide. So what a treat to be able to chat with you both.

[00:02:38] Rachel: We usually start with a pretty standard open question. Can you tell us about something ordinary recently that you found beautiful?

[00:02:46] David: Well, I can, because I’ve heard that question asked of others and it’s a beautiful question. So I was thinking about this and when I was thinking about it, I happened to be actually doing it. So it’s a little bit quirky, but sort of started in Covid. I would take a cricket ball and just go by myself to the cricket nets. I don’t know what you know about cricket, but most people, when they practice, they do with other people. And it’s quite unusual to see someone running in particular if they’re a bit grown up, running in and bowling a ball to no one at the other end of the net.

But believe it or not, this is something I find quite beautiful because it’s exercise. It’s quite meditative in between the exertion, you get to just look up at the tops of the trees. And then when it’s not so cool, the oval is quite near the ocean. So if I’ve got all hot and I can just wander down to the ocean and plunge into the chilly but refreshing waters and I will not be the same afterwards as I was beforehand.

[00:03:48] Lucy: So do you do a bit of solo bowling and then a dip in the ocean? Do you combine the two?

[00:03:53] David: I do if it’s. If it’s hot enough.

[00:03:55] Lucy: That’s amazing. That’s brilliant

[00:03:56] Rachel: So before we launch into what we’re here to talk with you about today, David, how about you tell us about yourself a little bit about who you are and certainly.

[00:04:05] David: Sure. I’ve listened to other episodes of your podcast and people are profound, generous in relation to sharing their experiences of life. One of the many things I treasure about your podcast.

So, yeah, well, you know, I’m a brother, so I’m a brother to Paul, but also to two sisters, Kate and Liz, all of whom live in Naarm in Melbourne. So I moved to Adelaide because of the ideas, because of narrative ideas and the community here. We’d grown up actually in Melbourne, and I should say because people who know Paul might be listening. Paul was going to be an AFL star and he was great at AFL, but he had to move to Canberra because of my asthma and my dad’s asthma. Anyway, slight diversion.

So I moved because I was searching for ways of making sense of this crazy world. And so I was searching for any hopeful approaches about different ways of being men, reducing men’s violence against women and children. And Dulwich Centre, where I work now, had produced a newsletter about men’s ways of being.

And it was men and women working together in gender partnership.

These days, it’d be people of many genders working together in relation to these issues. Anyway, I’d been working in prisons and also in schools trying to prevent men’s violence and searching for these ideas. And the most xciting ideas that I came across anywhere in English speaking literature, because I was really searching, were from Adelaide and I was a real snob from the eastern states. You’ve probably, you know, moved past these dominant ideas from the eastern states. I didn’t know there was a such thing as eastern state dominance. But once you get to Adelaide, you realise, actually…

[00:05:56] Rachel:  Is there something about the context of central southern Australia as opposed to eastern states that you think allowed for Dulwich Centre to emerge? Or the, you know, is there something specific about the culture or the difference of not being an eastern state?

[00:06:14] David: That’s a good question.

I’m not sure I’m the best person to answer it, but there are a lot of very generative things do happen in Adelaide and certainly I think anywhere that’s not the mainstream is where I think the most exciting ideas are. And that would be a narrative therapy ethos also. So, I don’t know, some people would say so, some people would say it’s a place where different meridians even cross. There’s a place south of Adelaide that’s a very significant place, if you believe in those realms.

Beautiful place. But I think also it’s been partnerships that have taken place here that have really made the difference and they can happen anywhere. But it’s been long term partnerships, both with folks experienced extreme states that we’ll talk about earlier, and partnerships with children and families, but then also partnerships with First Nations Australians Aunty Barb Wingard and Tim Agius and others.

But I like your question. There is something certainly local and local relationships that have made things possible here that I’m drawn to.

[00:07:30] Lucy: Narrative therapy. A lot of people don’t know what it is. Rachel and I share the same enthusiasm that you have for narrative therapy, but for people who don’t know what it’s about. Can you just tell us a little bit about narrative therapy?

[00:07:44] David: Well, I know I’m the guest and I should be answering that question, but I do have a sense, having listened to your podcast, including the recent episode with Hayley where you were actually talking about stories, power and reclaiming identity, that the two of you actually have a pretty, yes, strong sense or some ideas. First, I was wondering if I could turn that question back. I will answer, but can I ask you first, perhaps either of you, about what’s of interest to you or your connection to narrative practice and this podcast, before I jump in.

[00:08:18] Lucy: It is interesting because I’ve had to describe the training I’ve done to people and it’s hard to summarize because there’s not Much that I can compare it to, but I like the idea.

I think someone wrote the book Telling stories that make us in ways that empower us or make us stronger.

[00:08:34] David: Telling our stories in ways that make us stronger.

[00:08:36] Lucy: Yes.

[00:08:36] David: The book by Aunty Barb, who I just mentioned, and Jane Lester.

[00:08:39] Lucy: Yeah. And that, to me, like, summarises it. Like, we tell ourselves stories all the time, but why wouldn’t we choose the ones that empower us, make us be better humans in this world? And I think when I did the training, it’s just such a. It’s so respectful and compassionate. And I was saying to Rach before, like, there was lots that was happening in working in mental health systems that was really disheartening. And hearing about narrative therapy has made me feel really hopeful about working in that space again. So, yeah, I’m super excited by it. I know very little, though.

[00:09:16] David: I recognize your description. So. Yeah, yeah, yeah, it’s nice to hear.

[00:09:21] Rachel: Mm. Yeah. I think, you know, language shapes reality and how we.

How we speak about things defines our experience. And that could be good, and that can not be good. And so, you know, using storytelling to redefine and retell and reshape realities can mean that we can find ourselves out of situations and emerge differently in a way that I think is healing and identity reforming.

So that’s how I think about it. And, you know, I’m just looking at the book here in front of us called Language Matters, and it, you know, it all kind of talks about how we. How we speak about things and when we speak about things and who hears those words helps shape our experiences or reshape our experiences in the world.

[00:10:16] David: Well, it’s nice of me not to have to go first.

I appreciate your descriptions and I don’t know, in terms of narrative therapy, and usually I say narrative therapy and community work or even narrative practice, because it did emerge from family therapy and working in the therapy realms, but much, much broader than that now. And maybe I’d also say that even back before it had a name, because the name only came about in, like, 1990, but the ways of working had been in formation quite a bit of time before that and really emerged, I think, from social movements, not absolutely directly, but, you know, before my time in the late 1960s, both the protest movement trying to question Australian involvement and American involvement in the Vietnam War was trying to change Australia.

And then the women’s liberation movement and issues of gender was changing Australia.

And some of the key people involved in the development of narrative therapy here in Adelaide, Michael White And Cheryl White, and then later their collaboration with David Epston from New Zealand.

They were part of these social movements.

They came to look at the mental health system and the degradations of that system in the 70s and 80s and the disrespect and only professionals being able to define and determine the future of people who came from often working class backgrounds like Michael White came from. And Cheryl White was from the country and obviously joined with others. But they wanted to take on the mental health system. I mean, that was why narrative therapy exists. It was to.

One of the things was they decided early on, obviously critique was going to be crucial.

And in the early days you couldn’t talk about one’s personal experience because as soon as you did, your critique was completely disqualified. And what’s wonderful about your podcast and discovery college, and that’s not true anymore.

[00:12:27] Lucy: Yeah.

[00:12:29] David: So critique was going to be crucial, but what they also thought is actually alternative practices were going to need to be credited. You’re going to have to show them actually you can do other things other than disrespectful, top down, coercive, professionalized responses. There are other possibilities. So they determined to join with others and just search and create an experiment. And it was a time when experimenting happened less now. There wasn’t evidence based, you must do it this way. It was like no one knows what they’re doing, so let’s create something.

And they’d have Friday afternoon discussions and people would share hopeful work and then they’d start a publishing house because no one would publish this different way of working anyway. That part of what is. When you say what is narrative therapy? That’s part of it. It’s a history of people being determined to contribute to different ways of responding to social harm and people in distress. So that’s one of the things that I think is good to know about what is narrative therapy?

[00:13:33] Lucy: Yeah, it’s good to understand the history. Could we maybe say a little bit about how narrative therapy is helpful for people who are in extreme states?

[00:13:42] David: Well, I reckon I’m not necessarily the best person to answer that question, but I can talk a bit about how actually people who have experienced extreme states have made contributions to the development of narrative therapy from the beginning and their embracing of certain ideas and collaborating particularly with Michael White. Well, narrative therapy wouldn’t exist without their contributions in many ways. So there were two groups that narrative therapy sort of started with. One was with children and there was creative ways of responding to kids experiencing debilitating fears or having really tough experiences of life. And that’s partly where externalizing conversations came from and creative ways of kids drawing their fears and then educating them, putting them in boxes and creating the Fear Busting and Monster Taming association of Australia and New Zealand. Anyway, all these creative different ways happened. But the other group was people who’d spent a lot of time within psychiatry then were seeing Michael White often, like they tried everything else. And people would say, you may as well go and see Michael White. Like those folks who’d had real strife and other approaches hadn’t fitted. And together they explored what would sustain them in addressing what they were going through. Some of the externalizing was helpful, but so were like the documents. And I’ve got a little thing written by one of the early folks talking about what these documents meant. So maybe I’ll just say a tiny bit about documents in narrative therapy and then say how some of the folks in extreme states found them helpful. Would that work?

[00:15:17] Lucy: Sbsolutely.

[00:15:19] David: So There were like three breakthroughs in the. This is in the 1980s, even before it was known as narrative therapy. One was externalizing the person’s not the problem. The problem is the problem. Assisting people like you do to honor people’s own ways of naming problems. It’s up to the person themselves to name their experience in their own words and terms. So that was one sort of breakthrough, because that was a bit unheard of early on. There was another breakthrough that was about grief, actually. And again, back in the 1980s, the prevailing idea was that if someone was really, really struggling with grief, that they needed assistance to further let go, to further say goodbye to those folks.

It was a pervasive, normative idea within psychotherapies. When Michael was meeting with people who were really struggling with prolonged grief, he realized they tried so hard to say goodbye for so long, and actually it was making it worse sometimes.

And so there was a paper called Saying hello Again. Saying hello Again, Conversations. And what became Remembering Conversations was a real breakthrough. And the third was something that I’ve also heard you talk about on the podcast was about different sorts of documentation that rather than these files created by other people’s versions of your life, usually every negative, the worst things that have happened in your entire life being recorded forever in a way you had no control over.

Still pervasive now, isn’t it? Which, tragically

[00:16:51] Rachel: I think there’s an increasing respect of the authorship, like, you know, trying to make sure we do that in the most respectful way, but we’re still authoring people’s lives.

[00:17:02] David: So back in the 80s, Michael wouldn’t read people’s files. He would say, that’s not how he would get to know the person, but he would occasionally weigh them because they would weigh so much. He would use it as a way of honoring the strength that the person must have been having to be able to endure this weight of file.

And then they would create a counter document which was in that person’s own words and was about what they care about in life and what had helped them to endure whatever it was that was going on. And then this would get slipped into the existing file. So at least there’d be one honoring document. And for people in extreme states, although that language wouldn’t have been used a wonderful language, but sometimes these documents were very, very precious because when they were being faced with a tumultuous time, they would be able to turn to these documents and reread their version of life and their authority. I’ve brought various examples I can share later. But that’s just one of the things that folks in extreme states did say from the earliest of times, that being able to represent their own lives, what they care about, what they wanted to be able to remember when other forces might try and disavow them of them and to carry them literally with them and have other audiences know this about their lives. And that’s just. Yeah, one. One realm.

[00:18:36] Lucy: I really like how you’ve flipped the question on its head. Rather than what can narrative therapy do for people in extreme states? It’s. They did so much to build that practice.

[00:18:48] David: They really did.

[00:18:49] Lucy: And that’s pretty unique and special.

[00:18:53] David: I would agree with you. And it’s an acknowledgement and isn’t always made. But narrative therapy wouldn’t exist without the children’s contributions. There’s a book I did bring. I said, bit strange to do show and tell on the podcast. So it’s tell and tell. But I brought a book that’s called.

It’s my favorite book in narrative practice. It’s by Cheryl White, and it’s called a memory book. For the field of narrative practice, there’s one chapter that’s on children’s contributions. So those children who are living with terrible fears, they made profound contributions to externalizing practice that otherwise narrative ideas wouldn’t exist.

[00:19:29] Rachel: I wonder if you can say something more about externalizing or the externalization process and because I wonder what our listeners might be thinking or what that means or how that supports people’s process.

[00:19:43] David: Well, it’s one of a number of sort of cornerstones of narrative practice. It’s a politics and an ethics as well as a practice. And it’s really trying to assist people to find their own names for whatever it is that’s knocking them off their perch, and then to, once their own naming has been found, to start looking at, you know, the times when whatever it is is causing the most difficulty. What’s it doing unpacking the influence of these problems, but at the same time elevating the skill and insider knowledge of the person. And it can be externalizing many different sorts of things. There was a document I came across on expectations. That was what the externalizing was. I realized that actually it was other people’s expectations of what a good life would look like that would constantly be tripping up this person. So thinking about, okay, well, let’s really talk about expectations and how they work in your life, and what are the different ways of resisting these and what are the times when they’re less powerful and what’s going on there? Externalizing is a way of both naming, but creating these pathways to different storylines. What’s your experience in relation to externalizing

[00:20:58] Rachel: while you’ve been talking? I just had this sudden memory of watching a video many, many years ago of Michael White in a meeting with a family where he was talking about the child’s toileting problems, and they started to talk about Mr. Sneaky Poo. And it was, you know, this was a problem that was not speakable before for this family and for this young boy. And it. It became playful.

It became something they could all talk about in a way that. That was very freeing. And it allowed the young boy to start to bring his own expertise about the problem into the situation. And for me, as a practitioner, that was pretty life altering, really. Like, it really shifted my ideas or was the start of shifting some ideas. And I think the other thing that this practice has brought is collectivity. You know, it sort of creates these movements of people who join together to share their expertise and their knowledge. And that’s really beautiful about it, too. It’s about bringing people together and creating.

Creating movements.

[00:22:10] David: Could not agree with you more and say, with the kids, again, I mentioned, and a kid who was experiencing himself as fearful and scared to go to school, having nightmares once he had a chance to talk about what the fears, how the fears were affecting his life, it wasn’t him as the fearful boy. It was these fears. And once he drew them.

And Michael White could also say, wow, well, they look absolutely terrifying. I’m not surprised they’re keeping you awake at night. Do you think they’re keeping other people awake? What about the neighbors? And so then they investigate whether the names anyway. And then once it’s in the realm of the person’s own naming, then as you say they can, there’s a chance to come up with their own ideas about how to address this. So this little kid had ideas and it was to educate the fierce. He thought that’s what they needed and put them in a box. He said it would be cruel to keep them in the box all the time, just overnight. So he’d let them out again in the morning.

And why I’m telling this story is it links to the collectivity. Because then he started going back into his school and asking, are there any other kids who would any of you also having trouble with the fears? Yeah, and of course, yeah, these are difficulties of life that other people experience also. And then he would say, don’t worry if you draw your fears and you give them to me, I’ll take them home, I’ll put them in my box, I’ll educate them and I’ll bring them back the next morning.

And he became, yes, the president of the Fear Busting and Monster Taming Association. So these collectives, these collectives can form and whether that’s children or whether it’s people experiencing extreme states or what back in the early 90s was, you know, folks wanting to meet who were hearing hostile voices of schizophrenia and trying to come together too, share ways of dealing with this. The term schizophrenia wasn’t resonant, it wasn’t the naming that most of the folks wanted to describe their experiences, but to have a place, a non shaming place to actually talk about what on earth they were experiencing and trying to find language for things that are extremely difficult to find language for. And that’s, yeah, that’s all part of this realm of externalizing.

[00:24:26] Rachel: Do you think that the Hearing Voices movement is a narrative practice?

[00:24:31] David: Well, I wouldn’t say it’s a narrative practice because it has its own history. But I think it’s absolutely fan-bloody-tastic. And those histories overlap because yeah, Hearing Voices movement as you know, when it started in the late 80s at the same time Michael was meeting with folks hearing voices here. When the first Hearing Voices group that I know of in Australia started in the early 90s, the Power to Our Journeys group, there was, you know, correspondence with the hearing Voices movements, folks. And I think the hearing Voices movement is a. Yeah, just a most wonderful movement. I don’t think it’s up to me to say if it’s a narrative movement because they may well not say so. But I would say that narrative practitioners and the field of narrative practice just cheers, cheers on the Hearing Voices, movement. Gusto.

[00:25:20] Lucy: Many people might not know who Michael White is. He obviously did a lot of wonderful and unique work, but it almost sounds like he’s created his own discipline. Like what did he identify as a therapist or.

[00:25:33] David: So narrative therapy really came in the therapy room, really came about through a friendship between two people. So it was Michael White and David Epston in New Zealand. They were social workers by training and it was very unusual, and to this day is very unusual, that a field within the mental health realm was created by social workers, not psychologists, psychiatrists. But from the beginning they were very clear that this was being co created with the families and the people they were meeting with. David Epson was also an anthropologist before he was a social worker. So in an anthropological, particularly when anthropology was challenged very much by indigenous peoples to say why don’t you stop studying us and instead study yourselves to work out why you’re so interested in studying us. That political turn in anthropology and then Cheryl White and also Ann Epston and other feminist practitioners were absolutely crucial in trying to say what could be a way of working that wasn’t mother blaming, like externalizing can also be seen as a history of feminist influence. To be able to name what problems are in families that aren’t. Every single problem was being blamed on others.

So yes, it is unusual to create a field, it was a collective effort, but it did come from Australia and New Zealand, which was also very unusual because every other dominant psychological understanding had come from the northern hemisphere. And there was a time in family therapy when folks decided, well, let’s stop having keynote speakers from the Northern hemisphere. Let’s try and work out what’s a way of working that could fit here. More recently, First Nation’s influence has also been really, really crucial. So yeah, so Michael White, but he was also, you know, he’s from a working class neighborhood in Adelaide, never got another degree, believed that universities were gatekeepers of knowledge and who would want to turn to universities for further know how that the knowledge would come from the margins. He’s no longer alive.

David Epston’s still teaching things online from New Zealand and they had this great collaboration where they’d be able to share their, you know, not just things that were going well, but things that weren’t going well and they’d be able to share and look at each other’s work. And David Epston would say, I don’t think you were doing that last time. What’s changed and just to generate new ideas, they didn’t want to give it a name. So I thought then it would potentially some people think now narrative therapy is this, but actually it’s a field that has always changed and is always changing.

[00:28:16] Rachel: So, you know, on Extremely Human, we often talk about compassionate and human-centred ways of responding to distress.

In a previous conversation with us, you were telling us about the Power to Our Journeys group and how that feels like a beautiful example of this.

Would you mind telling us a bit more about that group and how it works and how it came about?

[00:28:37] David: Far from minding, I’d be very happy to tell you. And I appreciate the chance to speak about some of these histories because actually I think there’s so much for me to still learn from them and I’m interested in putting together, putting them more out in the world in some way. And this conversation with you can be part of that. If anyone’s listening would like to know more or participate in further discussions about these, it would be great. So Power to Our Journeys I have a little quote here which is from the Power of Our Journeys group. Power to Our Journeys is a support group for people who struggle through their lives hearing voices.

It’s an empowering group, enabling our stories and our insider knowledges to be heard and recognized. We’ve developed close and respectful friendships that help us through hard times. Each step we take together is about our survival, but these also have to do with justice because there is so much injustice around issues in the mental health field that needs to be addressed. We also pick daisies, fly kites, eat chocolates and sponsor dolphins.

[00:29:39] Lucy: So wholesome,

[00:29:42] David: so thought best to have them describe them in their own words. And there are a number of articles and documents that we can put links in the show notes to. And the reason why I’m very happy to speak about them is that they were, apart from being, as far as I know, the first group for folks hearing voices in Australia, which I think is significant in itself. They were just fan-bloody-tastic and I don’t think to this day I’ve ever experienced conversations with their degree of kindness and care of each other, knowing that the slightest cruelty or judgment could be fuel to patriarchal and hostile voices that were sometimes tormenting the group members. But I also am excited to share a talk about it because it was there were like three things that were going on at once. And I first came to Dulwich Centre, I think in 1993, I learned about the narrative therapy, what was happening in the therapy Room and loved it. Stayed up all night taking notes while other people in the youth refuge were snoring. Anyway, what was actually happening in counseling and therapy, I loved it. I was also introduced to the community projects, and they. I loved them just as much.

And one of them was what was called the Alternative Community Mental Health Project. It was small, it was modest. Everything, like, conveyed my excitement. But at the same time, Dulwich Centre is just a small place. And so none of these were grand. This was a small group of people who wanted to try and think, what could an alternative collective response be for folks who had mostly recently come out of psychiatric hospitals or had had a lot of time in and out of psychiatric hospitals. And so there was this group of community members and they needed to try and employ some people. Didn’t have any funds, so it’s completely unfunded. They sold T shirts to raise funds. The project members, the criteria was that they had had to have previously displayed a commitment to social justice. So these were who was going to be employed in the project. That was what was important. Not their professional degree, not there anything else to show a previous commitment.

And so Michael White would meet with some of the folks who had experience of extreme states in counseling. But it wasn’t enough. Just a conversation every so often wasn’t going to be enough when folks are also trying to create a new life in community. So they also brought people together in this group, the Power to Our Journeys group, where they could create collective documents that we’ll talk about a bit later, perhaps. And even that wasn’t enough. Having a group wasn’t quite enough because for the rest of the time, when you’re not in the group, you’re still trying to live life.

So these project members who had the commitment to social justice, they would, you know, visit folks and just go out for walks on the beach or have a cup of coffee or, you know, do everyday acts of living together, but be in company.

And it wasn’t just company because there was also this shared understanding that this was also a political project, that these folks had often been subjected to some pretty terrible experiences, that the voices that they. The hostile voices that they were experiencing were often quite abusive, patriarchal voices.

And so these steps that people were taking, this walk on the beach, yes, it was a walk on the beach, but actually it was also an achievement. It was also an achievement that we’re doing this. And it’s also. They’re going to talk about that next time in the group together. So it’s linked to the collective, and the collective will be celebrating that, but also getting ideas from each other. So they’re also contributing to each other’s lives.

And it was this interweaving between the therapy, the group and this community project. I just think it’s a really significant story to be known. Not that it was, you know, solved all problems. There were struggles, but I think it was marvelous. And that’s one of the projects that I first learned about when I first came. And it was also, you know, there was a commitment that the police would never be called or, you know, that they had had to do things in ways that were going to be outside the systems. And that required 24 hour other options to be calling and all the sorts of things that you’re very well aware of in terms of alternative responses and some great initiatives now happening in different parts. But this was in the early 90s.

[00:34:23] Rachel: I have a question which may not make it into the cut, but you know, introducing alternative practices is challenging in a very strong dominant mainstream system. What was it like at the time in trying to introduce alternative practices into the community?

[00:34:45] David: Well, this was completely outside mainstream services. So that’s what made it a possibility. Also might be seen as a risk now or whatever. But Michael had been working within psychiatry.

And then at a time Cheryl said, you’re either going to have to choose to continue to be so frustrated or you’re going to have to choose to stay in relationship with me and come out and create something independent. So that’s why Dulwich Centre then formed outside mainstream mental health services. So difficult side is absolutely no funding. So everything had to be being generated to create this alternative response. But it wasn’t as if people had to be convinced for this alternative community project to happen right outside, which made it also possible. What was exciting about this project to me is that it was an independent small initiative trying to just imagine what a different sort of approach could look like. The other thing that was significant was the Power To Our Journeys group, as you were saying, was also about collective possibilities. They’d also create these collective documents which I think you had a had a peek at some of the collective documents.

[00:36:00] Lucy: I did get a chance to have a look at some of the documents about power to our journeys group. And it actually made me teary just reading the way they spoke about the group and like the word respect comes to mind for each other and the way Michael treated them as equal. And there was a playfulness about it as well. They’re trailblazers, really quite progressive for 1990s.

[00:36:24] David: They were, they were trailblazers and one member, sue, who’s no longer alive. Sue had been very active in the theatre, but she’d also been a feminist activist. And a number of the group had strong feminist politics. A number of the group were lesbian, and their politic also was really influential in its history. And so this is from Sue’s words. We all come to the project with different perspectives on the politics of analyzing and dealing with the hostile voices. But I think I can safely say that we have a common bond. We all find it really useful to say that we’re united together against the injustice of the Voices they’re particularly talking about. They’re obviously also positive voices and friendly voices, but they’re talking about the hostile voices here. For myself, I found it almost like a watershed, a revelation, to view the voices and deal with the voices as a political campaign.

This is just my personal view, which is informed by my past experience as a political activist. But I believe each one of us is a political activist in our own way, because we each stand up to the injustice of the voices. Used to say, she used to be a political activist out in the world. Now she’s a political activist in her own mind to try to counter the patriarchy of the Voices. For me, anyway, the bad voices are patriarchal. They oppress me. They want to keep my life limited. I feel like I run a political campaign against the injustice of the Voices on a day by day, hour by hour, minute by minute basis, with the goal being to get back my life or to have a life. I think that the political nature of the work is worth acknowledging.

So, yeah, there was the respect, there was the joy, there was the support of the dolphins and there was shared politics.

[00:38:09] Lucy: Yeah. Where do the dolphins come into it?

[00:38:12] David: There are dolphins in here, in Adelaide. I think at that time it’s possible to sponsor dolphins to try and then, you know, be caring about the life of these particular dolphins. Some environmental care going on, too. And I remember one of the other rituals that happened with the files, these terribly degrading files. One member had been through a workers compensation scenario and there’d be all these horrible files. So when it all got completed, they had a big ritual, huge file burning bonfire. I burnt my rehab file. It was a great thing to do. And then they planted all these other trees and had alternative environmental action. So there were all these rituals and there was this interweaving of personal support with collective action, as you mentioned before, is what I think was one other thing so significant about these realms.

[00:39:11] Rachel: Were there other reflections of people who were part of the project that you would share who you know, that sort of reflect what it meant to be part of the group.

[00:39:21] David: Well, this is someone saying, better what I said before, I think this is from another community member. The times we, meaning times they spent with the community support workers spend together are not just nice times.

They’re times of very well thought out work. Work that involves reclaiming our lives from the voices. Our times together often involve conversations that expose the tactics of the voices and highlight how we are resisting them. We also share times that physically challenge the voices. For example, the voices constantly demand that I don’t go outside, that I stay inside. To successfully do the opposite is therefore a powerful event.

Together we may go for a walk on the beach. It’s a walk on the beach in the knowledge that we’re acting in solidarity. It’s not just like two people getting together and going for a walk, Even though that’s what all the people looking on would see. It’s different because we have a joint analysis of the situation and of how our actions together are contributing to changing my relationship with the voices and with life.

The time shared together are like little treasures to hang hope onto and to build upon. There’s one other story. Can I tell one other story about what the collective made possible?

[00:40:29] Lucy: Please.

[00:40:30] David: What was quite powerful was when the Power To Our Journeys group made a contribution to other people having tough times, but in very different realms. And the most powerful example of this, and it was mutual, was that there was a group in Malawi, this is also in the 90s, who were trying to face the devastation of HIV AIDS. And they’d also learned about externalizing, but they had taken into more a collective theatre way of doing things. So they had a person play the role of aids. This was sort of in village meetings, and they would ask aides like, you know, why do you like Africa so much? Why have you come into our lives? What are your hopes? And they managed to talk about, you know, profoundly difficult things, but in a theatrical way. And then they’d have another character called Care, who’s representing community action. And the villagers would ask, how are you going to support us and what are you going to do? And this character would pass around a stick to the group, and she would say, you know, can you break this stick? And people would break it. And then she’d pass around a collection of sticks woven in twine and say, you know, a bundle of sticks and say, could you break this? They’d try to break it on their heads or on their Feet or do this. And they couldn’t. They couldn’t break it. And then they’d all speak in chichewa, the local language saying, oh, stick on its own is easily broken, but a bundle will not break.

And a little video was made of this that Michael then shared back with the Power To Our Journeys group. And the Power To Our Journeys group loved this, and they wanted to send gifts to Malawi. So that didn’t have many things to share, but they had a T shirt that said Power To Our Journeys, and it had a picture of Mount Kilimanjaro, which was their symbol because they said that getting your life back from hostile voices of schizophrenia was like, you needed to make all the preparations you need to make to climb a mountain. You need to have a team you need to make. So this metaphor was significant.

Anyway, they sent the T shirts and they sent the Power to Our Journeys song over to Malawi. And the people in Malawi were so touched about this that they sent the bundle of sticks. Oh, so. And I have this most beautiful quote about what the having the bundle of sticks back in Australia meant. So this is what sue said, because then whichever member of the group was struggling the most would be given this bundle of sticks. So this is what Sue said.

Sometimes when I’m in stressful situations and the voices are playing up, having the sticks next to me is really significant.

They make me think of the people of Malawi overcoming enormous obstacles in their battles with HIV aids. And they give me courage to keep going.

I get strength from them and they shrink things so that they become more manageable. They remind me that when you’re up against something very big, then it’s important to take things just one step at a time. They reconnect me to the importance of every little thing, how every small stick is important because it’s together we are strong.

For me, these sticks are a powerful survival tool to carry around in my backpack. They’re powerful for the spirit. When the voices are having a go at me, or life’s kind of getting tough, having these treasures is so tangible. I can put my hand on them and hold them or literally carry them around for a day in my backpack. When things get a bit scary, I can just open up the backpack and say, oh, there they are.

I’ve taken these steps, sticks and the sarong to many places where I’ve been full of fear, where I’ve known I could be overwhelmed with fear. I might be at a course or something. And when the voices are having a go at me, I open up my backpack, stick my hand in there and just grab the sticks or just look at them and they remind me that I am who I am.

That might not seem to make sense, but they give me courage and they remind me of my connection with people.

Doctors or workshop leaders or teachers or whoever it is I’m having to deal with at the time may not know anything about me. Just having the sticks is like a secret. It’s a secret connection to this group, Power To Our Journeys Group, the Community Mental Health Project, and the people in Malawi. It changes my perspective on things.

[00:44:45] Lucy: Absolutely love that.

[00:44:46] David: I just. I love it when these different groups of different experience, both profound hardships, are making contributions to each other. And I think we could be doing a lot more of that because they’ve

[00:44:57] Lucy: all people who can hear voices. They’ve united together against their voices, and over the other side of the world, they’ve united together against aids. And then they’ve both helped each other. You wouldn’t think voice hearers and people with, you know, could have that powerful contribution to each other’s lives, but that’s incredible.

[00:45:20] David: Just a sort of sorts of possible exchanges across different worlds, I think. Yeah, there’s lots more that can happen with that, I reckon.

[00:45:28] Rachel: Well, it’s been a really lovely conversation, dd. Thank you so much. And I realize we’re coming to the end now. Is there anything that you think might have been lost or you want to revisit and hope carries forward from the Power To Our Journeys project?

[00:45:44] David: Well, there are probably lots of different ones, but there is one quirky element that always I just feel is very touching that really isn’t talked about very much these days. So maybe I can mention that it was about it, about invisible friends. Actually, you know, while the things I was talking about before in the Power To Our Journeys group were people’s efforts to try to diminish the effects of the hostile voices. There’s, of course, people also experiences of beautiful, friendly voices. Quite early on, apparently Cheryl said to Michael, why don’t you ask people about their invisible friends, like in childhood? And I’ve brought in this little book just for this moment, in case I could talk about invisible friends. So maybe I’ll just read this. This is in Michael’s words, and it says, “well, in this culture, certain points, children get talked out of their relationship with invisible friends. This is considered developmentally appropriate. However, I do keep in mind that there are many cultures in which a person’s relationship with the equivalent of invisible friends is preserved and in which their ongoing contributions to the person’s life is acknowledged. In my with people who are harassed by the hostile voices of schizophrenia, I sometimes learn of a childhood relationship with an invisible friend.

I can then ask these people questions about what these invisible friends meant to them, about how these invisible friends contributed to their lives in ways that were sustaining, about the circumstances of the loss of this relationship and so on. I can also ask people about what they think it was that they brought to the invisible friend’s life and to speculate about what the separation meant to the invisible friend. Isn’t that lovely? We can then explore the possibilities for a reunion and talk about how such a reunion might be empowering to both parties. And then we can put together plans for the reunion. I’ve attended many such reunions and I found them to be very moving and warming occasions.”

So I don’t know, just when you asked about things that you know, they’re not. I don’t think I’ve heard about invisible friend reunions enough and what.

[00:47:44] Rachel: I’ve never heard of them.

[00:47:45] David: So what our world could be like if there were more of these.

[00:47:49] Lucy: This is the most creative practice. I just love it. It’s so gorgeous.

[00:47:54] David: It’s also just a non-normative possibilities for life, isn’t it? Which is best for all of us. And that’s again what folks who’ve lived through and survived extreme states, often another thing, have to offer the broader culture to challenge all the normative assumptions of culture and life and how that can make life a lot better for living for everybody.

[00:48:14] Lucy: I think that’s a beautiful way to end. But before we do completely finish the chat, we’ve got one final question. Can you tell us either a story or a time of an act of care, big or small, that’s really stayed with you.

[00:48:31] David: So I’ve got two. Is that all right? Can I?

Lucy: Please.

One relates to my older sister, so Liz, who has early onset dementia and lives in a supported care accommodation. And when I last went to visit, I was going on the day where the music therapist was going to be attending because my sister is very musical person and her musical identity carries forward in ways that other aspects of our identity are harder for her to carry forth. So she’s a pianist and piano teacher. And anyway, when I turned up to the place and was met at the door by Liz and also by Rebecca, one of the support workers there, and the act of care was that Rebecca initiated the singing of “I’m on top of the world looking down on creation”, which is a song that has a history in my family, the song that my dad used to Sing, you know, whenever we got to the top of even a small bump, let alone a hill.

And it’s just a song that represents care and love and kindness and Rebecca knew that and then Liz joined in that song. So I was met at the door with this song which was just the most beautiful act of care, both from Liz, but also led by Rebecca.

[00:49:55] Lucy: So amazing. The power of music, hey?

[00:49:59] David: Power of music and just regrading and everything beautiful about it. Yeah, I loved it. And the second act of care that I want to mention was your question because what a lovely act of care to finish your podcast on. Can you tell us about an act of care, big or small? And they just conveyed the congruence of all your ethic and politic that is this podcast and is the Discovery College. So yeah, I wanted to thank you for that.

[00:50:29] Lucy: Appreciate that it’s been so joyful speaking with you. I think you’ve reminded me when we’re working with people or if we find ourselves in an extreme state or distress ourselves like not. Not to forget play and creativity and the joys that can still be within that. It’s really inspired me again. So thank you so much for bringing that Anya joyful playful energy. What a treat.

[00:50:52] David: Thank you for the chance to talk about these histories and also the present and for playing the Power To Our Journey song. So I guess folks will hear that it’s got its joyful moments and its sad moments and sung by you, I believe. Well sung by a whole, whole crew I think if that’s the. I’ll make sure that’s the record the version that you send.

It’s a version where some of the Power To Our Journeys group are there and some of the members of the community mental health team and it’s a bit of a rough and ready version, but that’s the best types. Yeah, I think it evokes a bit of the. Bit of the ethos of it all too. So yeah, thanks. Thanks very much for the invitation and yes, if anyone wants to be in touch after they’ve waited through the long show notes, then I’ll put my email there. And I am keen and partly spurred on by your interest to make more available some of these histories and link them to the present. So I will hopefully be working on that and if anyone listening is interested in being involved in any way, please, yes, get in touch.

[00:51:55] Song: A journey of a thousand miles begins with one step.

We’re coming together now. We’re talking about respect.

It shouldn’t be too much to ask, to listen and to learn. To fill the libraries with strategies that work and there is power to our journeys, there is hope in this room, voices to be heard and stories to be told.  There is power to our journeys, there is hope in this room, voices to be heard and stories to be told.

What could this be that we planted here today?

What could this be that we’re watering so carefully?

Could they be friendships Something so sacred yet so simple could they be friendships to sail.

There is power to our journeys. There is hope in this room voices to be heard and stories to be told There is power to our journeys There is hope in this room Voice to be heard and so stories to be told as we tell our stories we remember friends on similar journeys we take their hands and join them in rage and join them in sorrow and join them in hopefulness .There is power to our journeys. There is hope in this room, voices to be heard and stories to be told There is power to our journeys. There is hope in this room, voices to be heard and stories to be told. Well, we’re trying to get it together but together we have it all we’re trying to get it together but together we have it all we’re silently boiling over we’re silently boiling over well, we’re silently boiling over well, we’re silently boiling over! There is power to our journeys, there is hope in this room, voices to be heard and stories to be told. There is power to our journeys, there is hope in this room, voices to be heard and stories to be told. There is power to our journeys.

[00:55:11] Rachel: discovery college acknowledges that the views shared in this podcast reflect personal experiences and are not a substitute for professional mental health advice. They do not represent the views of Alfred Health.

[00:55:23] Lucy: Thank you for listening to our podcast. If you wanted to stay in touch or learn more about discovery college, please head to our website: discovery.college.

Connect with dd (David)
 Email: daviddenborough@dulwichcentre.com.au

Power to Our Journeys
Learn more about the Power to Our Journeys group 
 https://dulwichcentre.com.au/wp-content/uploads/2021/12/Power-to-Our-Journeys-by-Brigitte-Sue-Mim-and-Veronika-1.pdf

Explore the Dulwich Centre
The home of narrative therapy + so many great resources
 www.dulwichcentre.com.au

Free course: What is narrative practice?
Curious about narrative therapy? Take a look at this free introduction course:
 https://dulwichcentre.com.au/courses/what-is-narrative-practice-a-free-course/

“Sneaky Poo” + understanding tricky thoughts
Looking at externalisation 
 https://dulwichcentre.com.au/in-our-own-wayshttps://dulwichcentre.com.au/beating-sneaky-poo-2.pdf

Stories from around the world
Including the CARE Counsellors of Malawi + the “Bundle of Sticks”
 https://dulwichcentre.com.au/in-our-own-ways

Come and listen with:

Lucy (She/Her) – A big fan of ice cream and storytelling

Rachel (She/Her) – Social Worker, Dialogical Practitioner, mad footy fan and wildly passionate about transforming the culture of mental health services to be person-led and human rights informed.

 Incredible artwork @sharleencu_art

 Shout out to Amplify for welcoming us into their recording studio

EPISODE TRANSCRIPT – Power To Our Journeys

[00:00:00] Lucy: This podcast has conversations around different mental health experiences that may be distressing for some people. If that doesn’t feel like something you want to explore today, you might want to visit another podcast and come back to us another time.

[00:00:13] Rachel: discovery college acknowledges the traditional owners of country throughout Australia and recognises their continuing connection to lands, waters and community. We pay our respects to Aboriginal and Torres Strait Islander cultures and to the elders, past and present. They have never ceded sovereignty.

[00:00:31] David: Sometimes when I’m in stressful situations and the voices are playing up, having the sticks next to me is really significant. They make me think of the people of Malawi overcoming enormous obstacles in their battles with HIV aids and they give me courage to keep going.

They remind me that when you’re up against something very big, then it’s important to take things just one step at a time. They reconnect me to the importance of every little thing, how every small stick is important, because it’s together we are strong.

[00:01:10] Lucy: I’m Lucy

[00:01:10] Rachel: And I’m Rachel and we’re the hosts of the Extremely Human podcast.

[00:01:14] Lucy: Sometimes we move through big human experiences that others might not understand, like psychosis, grief, addiction, euphoria, or moments that feel completely unreal.

[00:01:26] Rachel: On Extremely Human, we hear from people who’ve been there and share what they’ve learnt along the way. Together we ask, how can we meet the full range of human experience with kindness and compassion?

What is narrative therapy and how did it begin? We’re joined by David: Denborough, who shares the history of narrative practices, the difference they can make in people’s lives and the story of a beautiful group called Power To Our Journeys/

[00:02:06] Lucy: Today we are still in Adelaide. We’re doing a few episodes in Adelaide and today we are joined by David Denborough, who is actually  Paul Denborough’s brother, who we had on an earlier episode. This is the episode  is: Is this really radical? Check it out if you haven’t. We now have his wonderful brother, David Denborough, also known as dd. Welcome and thank you for joining us.

[00:02:28] David: It’s very nice to be here. I enjoyed the episode with Paul very much when it came out some time ago, and I’m very glad you’re here in Adelaide. So what a treat to be able to chat with you both.

[00:02:38] Rachel: We usually start with a pretty standard open question. Can you tell us about something ordinary recently that you found beautiful?

[00:02:46] David: Well, I can, because I’ve heard that question asked of others and it’s a beautiful question. So I was thinking about this and when I was thinking about it, I happened to be actually doing it. So it’s a little bit quirky, but sort of started in Covid. I would take a cricket ball and just go by myself to the cricket nets. I don’t know what you know about cricket, but most people, when they practice, they do with other people. And it’s quite unusual to see someone running in particular if they’re a bit grown up, running in and bowling a ball to no one at the other end of the net.

But believe it or not, this is something I find quite beautiful because it’s exercise. It’s quite meditative in between the exertion, you get to just look up at the tops of the trees. And then when it’s not so cool, the oval is quite near the ocean. So if I’ve got all hot and I can just wander down to the ocean and plunge into the chilly but refreshing waters and I will not be the same afterwards as I was beforehand.

[00:03:48] Lucy: So do you do a bit of solo bowling and then a dip in the ocean? Do you combine the two?

[00:03:53] David: I do if it’s. If it’s hot enough.

[00:03:55] Lucy: That’s amazing. That’s brilliant

[00:03:56] Rachel: So before we launch into what we’re here to talk with you about today, David, how about you tell us about yourself a little bit about who you are and certainly.

[00:04:05] David: Sure. I’ve listened to other episodes of your podcast and people are profound, generous in relation to sharing their experiences of life. One of the many things I treasure about your podcast.

So, yeah, well, you know, I’m a brother, so I’m a brother to Paul, but also to two sisters, Kate and Liz, all of whom live in Naarm in Melbourne. So I moved to Adelaide because of the ideas, because of narrative ideas and the community here. We’d grown up actually in Melbourne, and I should say because people who know Paul might be listening. Paul was going to be an AFL star and he was great at AFL, but he had to move to Canberra because of my asthma and my dad’s asthma. Anyway, slight diversion.

So I moved because I was searching for ways of making sense of this crazy world. And so I was searching for any hopeful approaches about different ways of being men, reducing men’s violence against women and children. And Dulwich Centre, where I work now, had produced a newsletter about men’s ways of being.

And it was men and women working together in gender partnership.

These days, it’d be people of many genders working together in relation to these issues. Anyway, I’d been working in prisons and also in schools trying to prevent men’s violence and searching for these ideas. And the most xciting ideas that I came across anywhere in English speaking literature, because I was really searching, were from Adelaide and I was a real snob from the eastern states. You’ve probably, you know, moved past these dominant ideas from the eastern states. I didn’t know there was a such thing as eastern state dominance. But once you get to Adelaide, you realise, actually…

[00:05:56] Rachel:  Is there something about the context of central southern Australia as opposed to eastern states that you think allowed for Dulwich Centre to emerge? Or the, you know, is there something specific about the culture or the difference of not being an eastern state?

[00:06:14] David: That’s a good question.

I’m not sure I’m the best person to answer it, but there are a lot of very generative things do happen in Adelaide and certainly I think anywhere that’s not the mainstream is where I think the most exciting ideas are. And that would be a narrative therapy ethos also. So, I don’t know, some people would say so, some people would say it’s a place where different meridians even cross. There’s a place south of Adelaide that’s a very significant place, if you believe in those realms.

Beautiful place. But I think also it’s been partnerships that have taken place here that have really made the difference and they can happen anywhere. But it’s been long term partnerships, both with folks experienced extreme states that we’ll talk about earlier, and partnerships with children and families, but then also partnerships with First Nations Australians Aunty Barb Wingard and Tim Agius and others.

But I like your question. There is something certainly local and local relationships that have made things possible here that I’m drawn to.

[00:07:30] Lucy: Narrative therapy. A lot of people don’t know what it is. Rachel and I share the same enthusiasm that you have for narrative therapy, but for people who don’t know what it’s about. Can you just tell us a little bit about narrative therapy?

[00:07:44] David: Well, I know I’m the guest and I should be answering that question, but I do have a sense, having listened to your podcast, including the recent episode with Hayley where you were actually talking about stories, power and reclaiming identity, that the two of you actually have a pretty, yes, strong sense or some ideas. First, I was wondering if I could turn that question back. I will answer, but can I ask you first, perhaps either of you, about what’s of interest to you or your connection to narrative practice and this podcast, before I jump in.

[00:08:18] Lucy: It is interesting because I’ve had to describe the training I’ve done to people and it’s hard to summarize because there’s not Much that I can compare it to, but I like the idea.

I think someone wrote the book Telling stories that make us in ways that empower us or make us stronger.

[00:08:34] David: Telling our stories in ways that make us stronger.

[00:08:36] Lucy: Yes.

[00:08:36] David: The book by Aunty Barb, who I just mentioned, and Jane Lester.

[00:08:39] Lucy: Yeah. And that, to me, like, summarises it. Like, we tell ourselves stories all the time, but why wouldn’t we choose the ones that empower us, make us be better humans in this world? And I think when I did the training, it’s just such a. It’s so respectful and compassionate. And I was saying to Rach before, like, there was lots that was happening in working in mental health systems that was really disheartening. And hearing about narrative therapy has made me feel really hopeful about working in that space again. So, yeah, I’m super excited by it. I know very little, though.

[00:09:16] David: I recognize your description. So. Yeah, yeah, yeah, it’s nice to hear.

[00:09:21] Rachel: Mm. Yeah. I think, you know, language shapes reality and how we.

How we speak about things defines our experience. And that could be good, and that can not be good. And so, you know, using storytelling to redefine and retell and reshape realities can mean that we can find ourselves out of situations and emerge differently in a way that I think is healing and identity reforming.

So that’s how I think about it. And, you know, I’m just looking at the book here in front of us called Language Matters, and it, you know, it all kind of talks about how we. How we speak about things and when we speak about things and who hears those words helps shape our experiences or reshape our experiences in the world.

[00:10:16] David: Well, it’s nice of me not to have to go first.

I appreciate your descriptions and I don’t know, in terms of narrative therapy, and usually I say narrative therapy and community work or even narrative practice, because it did emerge from family therapy and working in the therapy realms, but much, much broader than that now. And maybe I’d also say that even back before it had a name, because the name only came about in, like, 1990, but the ways of working had been in formation quite a bit of time before that and really emerged, I think, from social movements, not absolutely directly, but, you know, before my time in the late 1960s, both the protest movement trying to question Australian involvement and American involvement in the Vietnam War was trying to change Australia.

And then the women’s liberation movement and issues of gender was changing Australia.

And some of the key people involved in the development of narrative therapy here in Adelaide, Michael White And Cheryl White, and then later their collaboration with David Epston from New Zealand.

They were part of these social movements.

They came to look at the mental health system and the degradations of that system in the 70s and 80s and the disrespect and only professionals being able to define and determine the future of people who came from often working class backgrounds like Michael White came from. And Cheryl White was from the country and obviously joined with others. But they wanted to take on the mental health system. I mean, that was why narrative therapy exists. It was to.

One of the things was they decided early on, obviously critique was going to be crucial.

And in the early days you couldn’t talk about one’s personal experience because as soon as you did, your critique was completely disqualified. And what’s wonderful about your podcast and discovery college, and that’s not true anymore.

[00:12:27] Lucy: Yeah.

[00:12:29] David: So critique was going to be crucial, but what they also thought is actually alternative practices were going to need to be credited. You’re going to have to show them actually you can do other things other than disrespectful, top down, coercive, professionalized responses. There are other possibilities. So they determined to join with others and just search and create an experiment. And it was a time when experimenting happened less now. There wasn’t evidence based, you must do it this way. It was like no one knows what they’re doing, so let’s create something.

And they’d have Friday afternoon discussions and people would share hopeful work and then they’d start a publishing house because no one would publish this different way of working anyway. That part of what is. When you say what is narrative therapy? That’s part of it. It’s a history of people being determined to contribute to different ways of responding to social harm and people in distress. So that’s one of the things that I think is good to know about what is narrative therapy?

[00:13:33] Lucy: Yeah, it’s good to understand the history. Could we maybe say a little bit about how narrative therapy is helpful for people who are in extreme states?

[00:13:42] David: Well, I reckon I’m not necessarily the best person to answer that question, but I can talk a bit about how actually people who have experienced extreme states have made contributions to the development of narrative therapy from the beginning and their embracing of certain ideas and collaborating particularly with Michael White. Well, narrative therapy wouldn’t exist without their contributions in many ways. So there were two groups that narrative therapy sort of started with. One was with children and there was creative ways of responding to kids experiencing debilitating fears or having really tough experiences of life. And that’s partly where externalizing conversations came from and creative ways of kids drawing their fears and then educating them, putting them in boxes and creating the Fear Busting and Monster Taming association of Australia and New Zealand. Anyway, all these creative different ways happened. But the other group was people who’d spent a lot of time within psychiatry then were seeing Michael White often, like they tried everything else. And people would say, you may as well go and see Michael White. Like those folks who’d had real strife and other approaches hadn’t fitted. And together they explored what would sustain them in addressing what they were going through. Some of the externalizing was helpful, but so were like the documents. And I’ve got a little thing written by one of the early folks talking about what these documents meant. So maybe I’ll just say a tiny bit about documents in narrative therapy and then say how some of the folks in extreme states found them helpful. Would that work?

[00:15:17] Lucy: Sbsolutely.

[00:15:19] David: So There were like three breakthroughs in the. This is in the 1980s, even before it was known as narrative therapy. One was externalizing the person’s not the problem. The problem is the problem. Assisting people like you do to honor people’s own ways of naming problems. It’s up to the person themselves to name their experience in their own words and terms. So that was one sort of breakthrough, because that was a bit unheard of early on. There was another breakthrough that was about grief, actually. And again, back in the 1980s, the prevailing idea was that if someone was really, really struggling with grief, that they needed assistance to further let go, to further say goodbye to those folks.

It was a pervasive, normative idea within psychotherapies. When Michael was meeting with people who were really struggling with prolonged grief, he realized they tried so hard to say goodbye for so long, and actually it was making it worse sometimes.

And so there was a paper called Saying hello Again. Saying hello Again, Conversations. And what became Remembering Conversations was a real breakthrough. And the third was something that I’ve also heard you talk about on the podcast was about different sorts of documentation that rather than these files created by other people’s versions of your life, usually every negative, the worst things that have happened in your entire life being recorded forever in a way you had no control over.

Still pervasive now, isn’t it? Which, tragically

[00:16:51] Rachel: I think there’s an increasing respect of the authorship, like, you know, trying to make sure we do that in the most respectful way, but we’re still authoring people’s lives.

[00:17:02] David: So back in the 80s, Michael wouldn’t read people’s files. He would say, that’s not how he would get to know the person, but he would occasionally weigh them because they would weigh so much. He would use it as a way of honoring the strength that the person must have been having to be able to endure this weight of file.

And then they would create a counter document which was in that person’s own words and was about what they care about in life and what had helped them to endure whatever it was that was going on. And then this would get slipped into the existing file. So at least there’d be one honoring document. And for people in extreme states, although that language wouldn’t have been used a wonderful language, but sometimes these documents were very, very precious because when they were being faced with a tumultuous time, they would be able to turn to these documents and reread their version of life and their authority. I’ve brought various examples I can share later. But that’s just one of the things that folks in extreme states did say from the earliest of times, that being able to represent their own lives, what they care about, what they wanted to be able to remember when other forces might try and disavow them of them and to carry them literally with them and have other audiences know this about their lives. And that’s just. Yeah, one. One realm.

[00:18:36] Lucy: I really like how you’ve flipped the question on its head. Rather than what can narrative therapy do for people in extreme states? It’s. They did so much to build that practice.

[00:18:48] David: They really did.

[00:18:49] Lucy: And that’s pretty unique and special.

[00:18:53] David: I would agree with you. And it’s an acknowledgement and isn’t always made. But narrative therapy wouldn’t exist without the children’s contributions. There’s a book I did bring. I said, bit strange to do show and tell on the podcast. So it’s tell and tell. But I brought a book that’s called.

It’s my favorite book in narrative practice. It’s by Cheryl White, and it’s called a memory book. For the field of narrative practice, there’s one chapter that’s on children’s contributions. So those children who are living with terrible fears, they made profound contributions to externalizing practice that otherwise narrative ideas wouldn’t exist.

[00:19:29] Rachel: I wonder if you can say something more about externalizing or the externalization process and because I wonder what our listeners might be thinking or what that means or how that supports people’s process.

[00:19:43] David: Well, it’s one of a number of sort of cornerstones of narrative practice. It’s a politics and an ethics as well as a practice. And it’s really trying to assist people to find their own names for whatever it is that’s knocking them off their perch, and then to, once their own naming has been found, to start looking at, you know, the times when whatever it is is causing the most difficulty. What’s it doing unpacking the influence of these problems, but at the same time elevating the skill and insider knowledge of the person. And it can be externalizing many different sorts of things. There was a document I came across on expectations. That was what the externalizing was. I realized that actually it was other people’s expectations of what a good life would look like that would constantly be tripping up this person. So thinking about, okay, well, let’s really talk about expectations and how they work in your life, and what are the different ways of resisting these and what are the times when they’re less powerful and what’s going on there? Externalizing is a way of both naming, but creating these pathways to different storylines. What’s your experience in relation to externalizing

[00:20:58] Rachel: while you’ve been talking? I just had this sudden memory of watching a video many, many years ago of Michael White in a meeting with a family where he was talking about the child’s toileting problems, and they started to talk about Mr. Sneaky Poo. And it was, you know, this was a problem that was not speakable before for this family and for this young boy. And it. It became playful.

It became something they could all talk about in a way that. That was very freeing. And it allowed the young boy to start to bring his own expertise about the problem into the situation. And for me, as a practitioner, that was pretty life altering, really. Like, it really shifted my ideas or was the start of shifting some ideas. And I think the other thing that this practice has brought is collectivity. You know, it sort of creates these movements of people who join together to share their expertise and their knowledge. And that’s really beautiful about it, too. It’s about bringing people together and creating.

Creating movements.

[00:22:10] David: Could not agree with you more and say, with the kids, again, I mentioned, and a kid who was experiencing himself as fearful and scared to go to school, having nightmares once he had a chance to talk about what the fears, how the fears were affecting his life, it wasn’t him as the fearful boy. It was these fears. And once he drew them.

And Michael White could also say, wow, well, they look absolutely terrifying. I’m not surprised they’re keeping you awake at night. Do you think they’re keeping other people awake? What about the neighbors? And so then they investigate whether the names anyway. And then once it’s in the realm of the person’s own naming, then as you say they can, there’s a chance to come up with their own ideas about how to address this. So this little kid had ideas and it was to educate the fierce. He thought that’s what they needed and put them in a box. He said it would be cruel to keep them in the box all the time, just overnight. So he’d let them out again in the morning.

And why I’m telling this story is it links to the collectivity. Because then he started going back into his school and asking, are there any other kids who would any of you also having trouble with the fears? Yeah, and of course, yeah, these are difficulties of life that other people experience also. And then he would say, don’t worry if you draw your fears and you give them to me, I’ll take them home, I’ll put them in my box, I’ll educate them and I’ll bring them back the next morning.

And he became, yes, the president of the Fear Busting and Monster Taming Association. So these collectives, these collectives can form and whether that’s children or whether it’s people experiencing extreme states or what back in the early 90s was, you know, folks wanting to meet who were hearing hostile voices of schizophrenia and trying to come together too, share ways of dealing with this. The term schizophrenia wasn’t resonant, it wasn’t the naming that most of the folks wanted to describe their experiences, but to have a place, a non shaming place to actually talk about what on earth they were experiencing and trying to find language for things that are extremely difficult to find language for. And that’s, yeah, that’s all part of this realm of externalizing.

[00:24:26] Rachel: Do you think that the Hearing Voices movement is a narrative practice?

[00:24:31] David: Well, I wouldn’t say it’s a narrative practice because it has its own history. But I think it’s absolutely fan-bloody-tastic. And those histories overlap because yeah, Hearing Voices movement as you know, when it started in the late 80s at the same time Michael was meeting with folks hearing voices here. When the first Hearing Voices group that I know of in Australia started in the early 90s, the Power to Our Journeys group, there was, you know, correspondence with the hearing Voices movements, folks. And I think the hearing Voices movement is a. Yeah, just a most wonderful movement. I don’t think it’s up to me to say if it’s a narrative movement because they may well not say so. But I would say that narrative practitioners and the field of narrative practice just cheers, cheers on the Hearing Voices, movement. Gusto.

[00:25:20] Lucy: Many people might not know who Michael White is. He obviously did a lot of wonderful and unique work, but it almost sounds like he’s created his own discipline. Like what did he identify as a therapist or.

[00:25:33] David: So narrative therapy really came in the therapy room, really came about through a friendship between two people. So it was Michael White and David Epston in New Zealand. They were social workers by training and it was very unusual, and to this day is very unusual, that a field within the mental health realm was created by social workers, not psychologists, psychiatrists. But from the beginning they were very clear that this was being co created with the families and the people they were meeting with. David Epson was also an anthropologist before he was a social worker. So in an anthropological, particularly when anthropology was challenged very much by indigenous peoples to say why don’t you stop studying us and instead study yourselves to work out why you’re so interested in studying us. That political turn in anthropology and then Cheryl White and also Ann Epston and other feminist practitioners were absolutely crucial in trying to say what could be a way of working that wasn’t mother blaming, like externalizing can also be seen as a history of feminist influence. To be able to name what problems are in families that aren’t. Every single problem was being blamed on others.

So yes, it is unusual to create a field, it was a collective effort, but it did come from Australia and New Zealand, which was also very unusual because every other dominant psychological understanding had come from the northern hemisphere. And there was a time in family therapy when folks decided, well, let’s stop having keynote speakers from the Northern hemisphere. Let’s try and work out what’s a way of working that could fit here. More recently, First Nation’s influence has also been really, really crucial. So yeah, so Michael White, but he was also, you know, he’s from a working class neighborhood in Adelaide, never got another degree, believed that universities were gatekeepers of knowledge and who would want to turn to universities for further know how that the knowledge would come from the margins. He’s no longer alive.

David Epston’s still teaching things online from New Zealand and they had this great collaboration where they’d be able to share their, you know, not just things that were going well, but things that weren’t going well and they’d be able to share and look at each other’s work. And David Epston would say, I don’t think you were doing that last time. What’s changed and just to generate new ideas, they didn’t want to give it a name. So I thought then it would potentially some people think now narrative therapy is this, but actually it’s a field that has always changed and is always changing.

[00:28:16] Rachel: So, you know, on Extremely Human, we often talk about compassionate and human-centred ways of responding to distress.

In a previous conversation with us, you were telling us about the Power to Our Journeys group and how that feels like a beautiful example of this.

Would you mind telling us a bit more about that group and how it works and how it came about?

[00:28:37] David: Far from minding, I’d be very happy to tell you. And I appreciate the chance to speak about some of these histories because actually I think there’s so much for me to still learn from them and I’m interested in putting together, putting them more out in the world in some way. And this conversation with you can be part of that. If anyone’s listening would like to know more or participate in further discussions about these, it would be great. So Power to Our Journeys I have a little quote here which is from the Power of Our Journeys group. Power to Our Journeys is a support group for people who struggle through their lives hearing voices.

It’s an empowering group, enabling our stories and our insider knowledges to be heard and recognized. We’ve developed close and respectful friendships that help us through hard times. Each step we take together is about our survival, but these also have to do with justice because there is so much injustice around issues in the mental health field that needs to be addressed. We also pick daisies, fly kites, eat chocolates and sponsor dolphins.

[00:29:39] Lucy: So wholesome,

[00:29:42] David: so thought best to have them describe them in their own words. And there are a number of articles and documents that we can put links in the show notes to. And the reason why I’m very happy to speak about them is that they were, apart from being, as far as I know, the first group for folks hearing voices in Australia, which I think is significant in itself. They were just fan-bloody-tastic and I don’t think to this day I’ve ever experienced conversations with their degree of kindness and care of each other, knowing that the slightest cruelty or judgment could be fuel to patriarchal and hostile voices that were sometimes tormenting the group members. But I also am excited to share a talk about it because it was there were like three things that were going on at once. And I first came to Dulwich Centre, I think in 1993, I learned about the narrative therapy, what was happening in the therapy Room and loved it. Stayed up all night taking notes while other people in the youth refuge were snoring. Anyway, what was actually happening in counseling and therapy, I loved it. I was also introduced to the community projects, and they. I loved them just as much.

And one of them was what was called the Alternative Community Mental Health Project. It was small, it was modest. Everything, like, conveyed my excitement. But at the same time, Dulwich Centre is just a small place. And so none of these were grand. This was a small group of people who wanted to try and think, what could an alternative collective response be for folks who had mostly recently come out of psychiatric hospitals or had had a lot of time in and out of psychiatric hospitals. And so there was this group of community members and they needed to try and employ some people. Didn’t have any funds, so it’s completely unfunded. They sold T shirts to raise funds. The project members, the criteria was that they had had to have previously displayed a commitment to social justice. So these were who was going to be employed in the project. That was what was important. Not their professional degree, not there anything else to show a previous commitment.

And so Michael White would meet with some of the folks who had experience of extreme states in counseling. But it wasn’t enough. Just a conversation every so often wasn’t going to be enough when folks are also trying to create a new life in community. So they also brought people together in this group, the Power to Our Journeys group, where they could create collective documents that we’ll talk about a bit later, perhaps. And even that wasn’t enough. Having a group wasn’t quite enough because for the rest of the time, when you’re not in the group, you’re still trying to live life.

So these project members who had the commitment to social justice, they would, you know, visit folks and just go out for walks on the beach or have a cup of coffee or, you know, do everyday acts of living together, but be in company.

And it wasn’t just company because there was also this shared understanding that this was also a political project, that these folks had often been subjected to some pretty terrible experiences, that the voices that they. The hostile voices that they were experiencing were often quite abusive, patriarchal voices.

And so these steps that people were taking, this walk on the beach, yes, it was a walk on the beach, but actually it was also an achievement. It was also an achievement that we’re doing this. And it’s also. They’re going to talk about that next time in the group together. So it’s linked to the collective, and the collective will be celebrating that, but also getting ideas from each other. So they’re also contributing to each other’s lives.

And it was this interweaving between the therapy, the group and this community project. I just think it’s a really significant story to be known. Not that it was, you know, solved all problems. There were struggles, but I think it was marvelous. And that’s one of the projects that I first learned about when I first came. And it was also, you know, there was a commitment that the police would never be called or, you know, that they had had to do things in ways that were going to be outside the systems. And that required 24 hour other options to be calling and all the sorts of things that you’re very well aware of in terms of alternative responses and some great initiatives now happening in different parts. But this was in the early 90s.

[00:34:23] Rachel: I have a question which may not make it into the cut, but you know, introducing alternative practices is challenging in a very strong dominant mainstream system. What was it like at the time in trying to introduce alternative practices into the community?

[00:34:45] David: Well, this was completely outside mainstream services. So that’s what made it a possibility. Also might be seen as a risk now or whatever. But Michael had been working within psychiatry.

And then at a time Cheryl said, you’re either going to have to choose to continue to be so frustrated or you’re going to have to choose to stay in relationship with me and come out and create something independent. So that’s why Dulwich Centre then formed outside mainstream mental health services. So difficult side is absolutely no funding. So everything had to be being generated to create this alternative response. But it wasn’t as if people had to be convinced for this alternative community project to happen right outside, which made it also possible. What was exciting about this project to me is that it was an independent small initiative trying to just imagine what a different sort of approach could look like. The other thing that was significant was the Power To Our Journeys group, as you were saying, was also about collective possibilities. They’d also create these collective documents which I think you had a had a peek at some of the collective documents.

[00:36:00] Lucy: I did get a chance to have a look at some of the documents about power to our journeys group. And it actually made me teary just reading the way they spoke about the group and like the word respect comes to mind for each other and the way Michael treated them as equal. And there was a playfulness about it as well. They’re trailblazers, really quite progressive for 1990s.

[00:36:24] David: They were, they were trailblazers and one member, sue, who’s no longer alive. Sue had been very active in the theatre, but she’d also been a feminist activist. And a number of the group had strong feminist politics. A number of the group were lesbian, and their politic also was really influential in its history. And so this is from Sue’s words. We all come to the project with different perspectives on the politics of analyzing and dealing with the hostile voices. But I think I can safely say that we have a common bond. We all find it really useful to say that we’re united together against the injustice of the Voices they’re particularly talking about. They’re obviously also positive voices and friendly voices, but they’re talking about the hostile voices here. For myself, I found it almost like a watershed, a revelation, to view the voices and deal with the voices as a political campaign.

This is just my personal view, which is informed by my past experience as a political activist. But I believe each one of us is a political activist in our own way, because we each stand up to the injustice of the voices. Used to say, she used to be a political activist out in the world. Now she’s a political activist in her own mind to try to counter the patriarchy of the Voices. For me, anyway, the bad voices are patriarchal. They oppress me. They want to keep my life limited. I feel like I run a political campaign against the injustice of the Voices on a day by day, hour by hour, minute by minute basis, with the goal being to get back my life or to have a life. I think that the political nature of the work is worth acknowledging.

So, yeah, there was the respect, there was the joy, there was the support of the dolphins and there was shared politics.

[00:38:09] Lucy: Yeah. Where do the dolphins come into it?

[00:38:12] David: There are dolphins in here, in Adelaide. I think at that time it’s possible to sponsor dolphins to try and then, you know, be caring about the life of these particular dolphins. Some environmental care going on, too. And I remember one of the other rituals that happened with the files, these terribly degrading files. One member had been through a workers compensation scenario and there’d be all these horrible files. So when it all got completed, they had a big ritual, huge file burning bonfire. I burnt my rehab file. It was a great thing to do. And then they planted all these other trees and had alternative environmental action. So there were all these rituals and there was this interweaving of personal support with collective action, as you mentioned before, is what I think was one other thing so significant about these realms.

[00:39:11] Rachel: Were there other reflections of people who were part of the project that you would share who you know, that sort of reflect what it meant to be part of the group.

[00:39:21] David: Well, this is someone saying, better what I said before, I think this is from another community member. The times we, meaning times they spent with the community support workers spend together are not just nice times.

They’re times of very well thought out work. Work that involves reclaiming our lives from the voices. Our times together often involve conversations that expose the tactics of the voices and highlight how we are resisting them. We also share times that physically challenge the voices. For example, the voices constantly demand that I don’t go outside, that I stay inside. To successfully do the opposite is therefore a powerful event.

Together we may go for a walk on the beach. It’s a walk on the beach in the knowledge that we’re acting in solidarity. It’s not just like two people getting together and going for a walk, Even though that’s what all the people looking on would see. It’s different because we have a joint analysis of the situation and of how our actions together are contributing to changing my relationship with the voices and with life.

The time shared together are like little treasures to hang hope onto and to build upon. There’s one other story. Can I tell one other story about what the collective made possible?

[00:40:29] Lucy: Please.

[00:40:30] David: What was quite powerful was when the Power To Our Journeys group made a contribution to other people having tough times, but in very different realms. And the most powerful example of this, and it was mutual, was that there was a group in Malawi, this is also in the 90s, who were trying to face the devastation of HIV AIDS. And they’d also learned about externalizing, but they had taken into more a collective theatre way of doing things. So they had a person play the role of aids. This was sort of in village meetings, and they would ask aides like, you know, why do you like Africa so much? Why have you come into our lives? What are your hopes? And they managed to talk about, you know, profoundly difficult things, but in a theatrical way. And then they’d have another character called Care, who’s representing community action. And the villagers would ask, how are you going to support us and what are you going to do? And this character would pass around a stick to the group, and she would say, you know, can you break this stick? And people would break it. And then she’d pass around a collection of sticks woven in twine and say, you know, a bundle of sticks and say, could you break this? They’d try to break it on their heads or on their Feet or do this. And they couldn’t. They couldn’t break it. And then they’d all speak in chichewa, the local language saying, oh, stick on its own is easily broken, but a bundle will not break.

And a little video was made of this that Michael then shared back with the Power To Our Journeys group. And the Power To Our Journeys group loved this, and they wanted to send gifts to Malawi. So that didn’t have many things to share, but they had a T shirt that said Power To Our Journeys, and it had a picture of Mount Kilimanjaro, which was their symbol because they said that getting your life back from hostile voices of schizophrenia was like, you needed to make all the preparations you need to make to climb a mountain. You need to have a team you need to make. So this metaphor was significant.

Anyway, they sent the T shirts and they sent the Power to Our Journeys song over to Malawi. And the people in Malawi were so touched about this that they sent the bundle of sticks. Oh, so. And I have this most beautiful quote about what the having the bundle of sticks back in Australia meant. So this is what sue said, because then whichever member of the group was struggling the most would be given this bundle of sticks. So this is what Sue said.

Sometimes when I’m in stressful situations and the voices are playing up, having the sticks next to me is really significant.

They make me think of the people of Malawi overcoming enormous obstacles in their battles with HIV aids. And they give me courage to keep going.

I get strength from them and they shrink things so that they become more manageable. They remind me that when you’re up against something very big, then it’s important to take things just one step at a time. They reconnect me to the importance of every little thing, how every small stick is important because it’s together we are strong.

For me, these sticks are a powerful survival tool to carry around in my backpack. They’re powerful for the spirit. When the voices are having a go at me, or life’s kind of getting tough, having these treasures is so tangible. I can put my hand on them and hold them or literally carry them around for a day in my backpack. When things get a bit scary, I can just open up the backpack and say, oh, there they are.

I’ve taken these steps, sticks and the sarong to many places where I’ve been full of fear, where I’ve known I could be overwhelmed with fear. I might be at a course or something. And when the voices are having a go at me, I open up my backpack, stick my hand in there and just grab the sticks or just look at them and they remind me that I am who I am.

That might not seem to make sense, but they give me courage and they remind me of my connection with people.

Doctors or workshop leaders or teachers or whoever it is I’m having to deal with at the time may not know anything about me. Just having the sticks is like a secret. It’s a secret connection to this group, Power To Our Journeys Group, the Community Mental Health Project, and the people in Malawi. It changes my perspective on things.

[00:44:45] Lucy: Absolutely love that.

[00:44:46] David: I just. I love it when these different groups of different experience, both profound hardships, are making contributions to each other. And I think we could be doing a lot more of that because they’ve

[00:44:57] Lucy: all people who can hear voices. They’ve united together against their voices, and over the other side of the world, they’ve united together against aids. And then they’ve both helped each other. You wouldn’t think voice hearers and people with, you know, could have that powerful contribution to each other’s lives, but that’s incredible.

[00:45:20] David: Just a sort of sorts of possible exchanges across different worlds, I think. Yeah, there’s lots more that can happen with that, I reckon.

[00:45:28] Rachel: Well, it’s been a really lovely conversation, dd. Thank you so much. And I realize we’re coming to the end now. Is there anything that you think might have been lost or you want to revisit and hope carries forward from the Power To Our Journeys project?

[00:45:44] David: Well, there are probably lots of different ones, but there is one quirky element that always I just feel is very touching that really isn’t talked about very much these days. So maybe I can mention that it was about it, about invisible friends. Actually, you know, while the things I was talking about before in the Power To Our Journeys group were people’s efforts to try to diminish the effects of the hostile voices. There’s, of course, people also experiences of beautiful, friendly voices. Quite early on, apparently Cheryl said to Michael, why don’t you ask people about their invisible friends, like in childhood? And I’ve brought in this little book just for this moment, in case I could talk about invisible friends. So maybe I’ll just read this. This is in Michael’s words, and it says, “well, in this culture, certain points, children get talked out of their relationship with invisible friends. This is considered developmentally appropriate. However, I do keep in mind that there are many cultures in which a person’s relationship with the equivalent of invisible friends is preserved and in which their ongoing contributions to the person’s life is acknowledged. In my with people who are harassed by the hostile voices of schizophrenia, I sometimes learn of a childhood relationship with an invisible friend.

I can then ask these people questions about what these invisible friends meant to them, about how these invisible friends contributed to their lives in ways that were sustaining, about the circumstances of the loss of this relationship and so on. I can also ask people about what they think it was that they brought to the invisible friend’s life and to speculate about what the separation meant to the invisible friend. Isn’t that lovely? We can then explore the possibilities for a reunion and talk about how such a reunion might be empowering to both parties. And then we can put together plans for the reunion. I’ve attended many such reunions and I found them to be very moving and warming occasions.”

So I don’t know, just when you asked about things that you know, they’re not. I don’t think I’ve heard about invisible friend reunions enough and what.

[00:47:44] Rachel: I’ve never heard of them.

[00:47:45] David: So what our world could be like if there were more of these.

[00:47:49] Lucy: This is the most creative practice. I just love it. It’s so gorgeous.

[00:47:54] David: It’s also just a non-normative possibilities for life, isn’t it? Which is best for all of us. And that’s again what folks who’ve lived through and survived extreme states, often another thing, have to offer the broader culture to challenge all the normative assumptions of culture and life and how that can make life a lot better for living for everybody.

[00:48:14] Lucy: I think that’s a beautiful way to end. But before we do completely finish the chat, we’ve got one final question. Can you tell us either a story or a time of an act of care, big or small, that’s really stayed with you.

[00:48:31] David: So I’ve got two. Is that all right? Can I?

Lucy: Please.

One relates to my older sister, so Liz, who has early onset dementia and lives in a supported care accommodation. And when I last went to visit, I was going on the day where the music therapist was going to be attending because my sister is very musical person and her musical identity carries forward in ways that other aspects of our identity are harder for her to carry forth. So she’s a pianist and piano teacher. And anyway, when I turned up to the place and was met at the door by Liz and also by Rebecca, one of the support workers there, and the act of care was that Rebecca initiated the singing of “I’m on top of the world looking down on creation”, which is a song that has a history in my family, the song that my dad used to Sing, you know, whenever we got to the top of even a small bump, let alone a hill.

And it’s just a song that represents care and love and kindness and Rebecca knew that and then Liz joined in that song. So I was met at the door with this song which was just the most beautiful act of care, both from Liz, but also led by Rebecca.

[00:49:55] Lucy: So amazing. The power of music, hey?

[00:49:59] David: Power of music and just regrading and everything beautiful about it. Yeah, I loved it. And the second act of care that I want to mention was your question because what a lovely act of care to finish your podcast on. Can you tell us about an act of care, big or small? And they just conveyed the congruence of all your ethic and politic that is this podcast and is the Discovery College. So yeah, I wanted to thank you for that.

[00:50:29] Lucy: Appreciate that it’s been so joyful speaking with you. I think you’ve reminded me when we’re working with people or if we find ourselves in an extreme state or distress ourselves like not. Not to forget play and creativity and the joys that can still be within that. It’s really inspired me again. So thank you so much for bringing that Anya joyful playful energy. What a treat.

[00:50:52] David: Thank you for the chance to talk about these histories and also the present and for playing the Power To Our Journey song. So I guess folks will hear that it’s got its joyful moments and its sad moments and sung by you, I believe. Well sung by a whole, whole crew I think if that’s the. I’ll make sure that’s the record the version that you send.

It’s a version where some of the Power To Our Journeys group are there and some of the members of the community mental health team and it’s a bit of a rough and ready version, but that’s the best types. Yeah, I think it evokes a bit of the. Bit of the ethos of it all too. So yeah, thanks. Thanks very much for the invitation and yes, if anyone wants to be in touch after they’ve waited through the long show notes, then I’ll put my email there. And I am keen and partly spurred on by your interest to make more available some of these histories and link them to the present. So I will hopefully be working on that and if anyone listening is interested in being involved in any way, please, yes, get in touch.

[00:51:55] Song: A journey of a thousand miles begins with one step.

We’re coming together now. We’re talking about respect.

It shouldn’t be too much to ask, to listen and to learn. To fill the libraries with strategies that work and there is power to our journeys, there is hope in this room, voices to be heard and stories to be told.  There is power to our journeys, there is hope in this room, voices to be heard and stories to be told.

What could this be that we planted here today?

What could this be that we’re watering so carefully?

Could they be friendships Something so sacred yet so simple could they be friendships to sail.

There is power to our journeys. There is hope in this room voices to be heard and stories to be told There is power to our journeys There is hope in this room Voice to be heard and so stories to be told as we tell our stories we remember friends on similar journeys we take their hands and join them in rage and join them in sorrow and join them in hopefulness .There is power to our journeys. There is hope in this room, voices to be heard and stories to be told There is power to our journeys. There is hope in this room, voices to be heard and stories to be told. Well, we’re trying to get it together but together we have it all we’re trying to get it together but together we have it all we’re silently boiling over we’re silently boiling over well, we’re silently boiling over well, we’re silently boiling over! There is power to our journeys, there is hope in this room, voices to be heard and stories to be told. There is power to our journeys, there is hope in this room, voices to be heard and stories to be told. There is power to our journeys.

[00:55:11] Rachel: discovery college acknowledges that the views shared in this podcast reflect personal experiences and are not a substitute for professional mental health advice. They do not represent the views of Alfred Health.

[00:55:23] Lucy: Thank you for listening to our podcast. If you wanted to stay in touch or learn more about discovery college, please head to our website: discovery.college.

Please keep in mind that this guest would like to remain anonymous.

✨ Check out the Star Size Comparison video mentioned in this episode: https://www.youtube.com/watch?v=HEheh1BH34Q

Come and listen with:

Lucy (She/Her) – A big fan of ice cream and storytelling

Rachel (She/Her) – Social Worker, Dialogical Practitioner, mad footy fan and wildly passionate about transforming the culture of mental health services to be person-led and human rights informed.

Incredible artwork @sharleencu_art

EPISODE TRANSCRIPT- Lost and Found

[00:00:01] Lucy: This podcast has conversations around different mental health experiences that may be distressing for some people. If that doesn’t feel like something you want to explore today, you might want to visit another podcast and come back to us another time.

[00:00:14] Rachel: discovery college acknowledges the traditional owners of country throughout Australia and recognises their continuing connection to lands, waters and community. We pay our respects to Aboriginal and Torres Strait Islander cultures and to the elders, past and present. They have never ceded sovereignty.

[00:00:32] Lucy: In this podcast, we share stories that help us learn from each other, connect us and inspire growth. We want to acknowledge that this way of being, of coming together to share knowledge and stories, is a tradition that has already existed on this land for hundreds of thousands of years as a part of the culture of First Nations people.

[00:00:51] Rachel: discovery college acknowledges the views shared in this podcast are about mental health experiences, but are not a substitute for professional mental health advice and support. The views in this podcast are not the views of Alfred Health, but are the views of the individuals we’ve had conversations with.

[00:01:07] Lucy: The stories we share on this podcast aren’t just stories, but memories of the people who have bravely shared their experiences with us. Remember to take care of yourself as you listen, as well as to take care of the stories that you hear.

[00:01:33] Rachel: Extremely Human is a conversation about the profound experience of extreme states. When we speak about extreme states, we want to explore a more humanistic way to understand people’s experiences that aren’t always shared by others.

[00:01:47] Lucy: Each extreme state holds different meaning for each person, including those related to psychosis, depression, grief and addiction. As we chat with a variety of humans, we explore the important question how can we respond to distress with greater compassion and humanity?

[00:02:15] Lucy: In this episode, our guest shares their experience of two extreme states, psychosis and depression. They talk about how they managed to overcome intense adversity and the teachings that followed. They speak about how reading 200 books in two years helped them find purpose, and how they found a way to find a life worth fighting for.

Thanks for coming in today. For those who don’t know who you are, would you be able to just tell us a little bit about yourself? A few tidbits.

[00:02:45] Guest: Few tidbits. Yeah. So, um. I’m just a simple human being trying to do my best out here in this crazy world. Probably one of the more interesting things about myself is that my sport of choice is parkour, which my girlfriend thinks is ever so dorky. Surprisingly, I’m quite creative. That’s not a thing that I used to be good at. Like when I was in high school, I was very academic, and then I took a gap year, and I realized I was young enough and had lots of potential. And I was like, I can do whatever I want. So I changed from, I was meant to study law and criminology, and then I did a 360 and did film and tv instead. I guess I’m still working out who I am and what I want to achieve in life and where I want to go. And, you know, there’s such an intense unpredictability about life. Like, none of us know what’s going to happen tomorrow. So I guess I love watching my life unravel like a story and getting to participate in that and be around the beautiful people that I’ve got to meet.

[00:03:41] Lucy: Such a cool way of looking at life. Like, you’re the main character in your narrative.

[00:03:45] Guest: I don’t think I am the main character of my narrative. I think I’m a side character to a lot of people.

Lucy: Which is important. Yeah.

Guest: I don’t think it’s pessimistic, though, to say that I’m not the main character, or maybe that’s just me being resigned to the fact that I don’t always want to be in command.

[00:04:02] Lucy: I feel like that’s a nice way of looking at it. A lot of people just sort of think they’re the only person in the universe and everyone else is the side characters. But in your narrative, you’re the side character.

[00:04:13] Guest: Yeah. It’s good for the plot.

[00:04:14] Lucy: It’s good for the plot! We’ve got one structured question of the day, and the rest is all a bit free flow. But the question we want to ask is, have you ever had a disproportionate reaction to anything in your life?

[00:04:31] Guest: I think the most immediate example is there’s a Japanese animation called Attack on Titan that was very popular, and it kind of started airing when I graduated high school, and I followed it for ten years, and then we waited, like, a year for the last two episodes to come out. And I remember watching the last episode, and I was just crying the whole time because I was so joyful that I got to witness the end of this story and also just absolutely weeping because it’s over. The end of an era has come, and I don’t know if that is a disproportionate reaction because it felt very natural.

[00:05:08] Lucy: Yeah.

[00:05:09] Guest: I couldn’t not cry.

[00:05:11] Lucy: It takes you on a journey. A  TV show takes you on a journey. I remember I cried at the last episode of Friends when Rachel and Ross got together. I was weeping. So I very much relate to that.

[00:05:21] Rachel: I cried on the last episode of big bang theory and Game of Thrones. They’re part of your lives, these characters, they. So there is a sense of loss when it finishes.

[00:05:31] Guest: Yeah, absolutely.

[00:05:32] Rachel: Yeah.So we were wondering, can you tell us a little bit about what your experience of extreme state has been?

[00:05:41] Guest: Yeah, we could be here for years talking about this, but I guess I’ve been fortunate enough to experience two very extreme states, and I say fortunate in the sense that it was a great learning opportunity for me as a human being eager to grow.

So I’ve experienced psychosis, which was very challenging in its own right, and I guess we can unpack that a little bit today, hopefully. And the other experience is the polar opposite, which was depression and intense suicidality. I would. Yeah, I would argue that these are pretty extreme states to kind of experience emotionally, personally, and just, you know, within social circles. You know, it impacts your friends and your family, or at least it did for me. I guess I kind of want to preface that anything I say today is incredibly subjective and based on my personal experiences, because it’s very personal for each person that goes through this. Psychosis was the first kind of extreme state that I’ve ever experienced. And leading up to it was interesting because I was in a pretty unhealthy relationship, and I learned about this thing called negative empathy, and it’s when you’re in a relationship and you take on their negative emotions as your own.

[00:06:59] Lucy: I’ve never heard of that.

[00:07:00] Guest: Yeah, negative empathy.

Yeah. I only learned about that, like, last year, and I was like, oh, that’s what that was.

[00:07:07] Lucy: Yeah, right.

[00:07:08] Guest: So I was in a relationship that wasn’t great for me, and then I got out of that relationship quite. It didn’t end so well. And then I was working two jobs, and I was under a lot of pressure. So the two jobs, I was working a late night shift from about 12:00 a.m. to 03:00 a.m. and the next job started at 06:00 a.m. that day. So I got about 3 hours sleep before I was at work again.

So my mind was under a lot of pressure. It was building up, and I became anxious, but I didn’t know what anxiety was. Cause I’d never experienced it, so I was stressed. I started drinking more, doubled down on work, worked harder than I had before.

And eventually my mind just built up and up and up. And then it kind of. I would describe it as a snap. Like, I remember exactly where I was when my brain just snapped into psychosis.

And then I was in that state for a year, which I’ve heard is a really long time to be unwell. That’s a word I’m happy to use. But, yeah, I was in that experience for a year.

Pretty intense.

[00:08:20] Lucy: Was it on and off or just constantly in that state?

[00:08:24] Guest: Pretty constant, yeah. Yeah.

[00:08:26] Lucy: And did you have any awareness that you were experiencing psychosis?

[00:08:30] Guest: No. So when I was in the experience, I had no idea what was going on. And even though I was hospitalized and the doctors tried to explain to me what was happening in my mind, I wasn’t very receptive to it because I didn’t think anything was wrong. I was quite. I wouldn’t say I was happy in the experience because I was very out of control and kind of lost command over my own agency. My brain didn’t know how to respond to the stress in any other way. So my reality kind of just crumbled. And everything that I kind of believed was thrown out the window. And all of a sudden, I had these profound beliefs that made no sense to anyone else other than myself. So I remember I was, like, playing piano, and my brain just kind of snapped. And then all of a sudden, these thoughts inundated my mind about, you know, maybe the universe is simulated, maybe there’s multiple universes and, oh, I think there’s probably a god. And these ideas came out of nowhere. And my whole cognition and perception on life shifted in a second, which was a lot to kind of navigate. And there was really no way to navigate it because, again, I wasn’t aware of what was happening to describe it in a common, more common way, because obviously it’s quite an individual experience. But for people that haven’t experienced psychosis, I guess it’s akin to doing certain kinds of drugs. But the difference, I feel that, between psychosis and a drug like that is that when you take the drug, you are hopefully doing it willingly. You’re choosing to have this profound experience. You know, it’s temporary, it will pass, whereas psychosis, you don’t know how long it’s going to go for, and it’s not controlled. You didn’t choose this experience. And I think that’s the difference. I think psychosis is very convincing when you’re in it. For me, like, I was very convinced of all these things that were going on in my life, and I think it feels like you’re accessing a different part of your mind. Like, there’s a film called Lucy and a film called Limitless with Scarlett Johansson and Bradley Cooper, respectively. And they are films that explore using 100% of the mind. And I think my psychosis felt like that to me, that I was overwhelmingly positive and that I had access to all of my memories.

I guess I felt omnipotent, for lack of a better term.

[00:10:49] Lucy: Sounds like a pretty incredible feeling.

[00:10:53] Guest: Incredible in a destructive way.

[00:10:55] Lucy: Yep.

[00:10:56] Guest: I guess at the time, it felt good, but as soon as I was out of that experience and could look back, I was like, okay, I lost 90% of my friends.

They didn’t die. They just abandoned me or couldn’t navigate my life with me anymore. But it really, really challenged me to kind of view myself differently. And I had to navigate this entire new kind of perspective. And I would call a lot of thoughts I had looking back, delusions. And I’m happy to use that term for myself.

[00:11:25] Lucy: Can you just say what delusions means to you?

[00:11:28] Guest: So, a delusion to me is an unsupported or an unfounded or sudden belief in something, because I know there’s, like, you know, religion is a thing, and there’s philosophy and there’s, you know, a whole range of thoughts that you can believe. But for me, it was the fact that they were sudden, that they had no logic to support them. There was no kind of sound reasoning that went into these ideas. They just snapped into awareness. And that’s why I would call them delusions for me. Yeah. Yeah.

[00:12:01] Rachel: I really heard you say that. I think 90% of your friends might have abandoned you through that. Were there people that were with you and tried to help?

[00:12:12] Guest: Yeah, I think it’s probably closer to 95%, to be honest.

I did have people that were there for me. One of my best friends kind of rushed to my aid when I was hospitalized and really was very angry that I was in hospital. They obviously didn’t have the complete picture, and neither did I, to be honest. Yeah. My best friend from uni, him and I were like brothers. Like, I respected him a lot as a man. And just the camaraderie that we had, we were very close, and that was a friendship I expected to probably last the duration of my life. But after the psychosis, I crashed into depression, and he was very confronted by that, and I never got to find out why. We never had a closing conversation. So I guess I never got closure about that relationship. He just kind of up and left, blocked me on social media, didn’t hear from him again. And that kind of loss is pretty devastating, especially when I guess this experience of psychosis really taught me who your friends are. And, you know, the ones that stick around are probably the ones that care the most about you.

But I had, my family supported me as well. They were incredible. At the time, I probably didn’t appreciate it too much, maybe wanted care in a different way. But looking back, I’m very thankful to have had so much support around me.

[00:13:33] Lucy: We’ve actually heard a lot of people say that they’ve lost a lot of friends when they’re going through something like that. Why do you think people drift away from people who are experiencing such a hard time?

[00:13:45] Guest: I think a lack of understanding, I guess, is my first response, but also maybe a protective factor. No, maybe some. Like, I remember in uni when I was around negative people, I kind of just distanced myself from them. I couldn’t have them in my life because it was bringing me down. And I guess a lot of my friendships were maybe more superficial than I thought they were. So, you know, it was okay for them to kind of move away and shift into their own life. But it was hard for me because that experience of psychosis, my life stopped. Everyone ran off into their careers, had a, you know, got married, had children, and I was back at square one trying to work out what does life look like for me? How do I get through this awful experience? So, yeah, life paused for me for, like, five years. And I would say only in the last year have I really started to bloom and to grow again.

[00:14:39] Lucy: I heard you speak about questioning how you got how would you get through such an awful experience, but how would you say you did get through that? Because one year is a long time to be in it.

[00:14:52] Guest: Yeah, one year is a long time. It’s interesting because obviously the western model is like, throw medication at it, subdue the symptoms. That didn’t work. A lot of the standard medications for my diagnosis didn’t help at all. So I was seeking professional help, but what was being provided wasn’t quite effective. Eventually, I just came out of the experience, and that felt like waking up as well. Like, the snap into psychosis felt like waking up. And then I remember snapping out of it and kind of being in hospital and being aware of myself for the first time in a year and being like, oh, I’m back. I can assess myself now. I can reflect. So, yeah, it naturally ended for me. I thought I was going to be in psychosis for a long time, and a year is a long time. But eventually I did come out of it and then I went into depression. It’s fascinating because the decline into depression was actually really helpful for me in the sense that the psychosis was this delusional, religiously grandiose kind of state. And then coming out of that into depression actually enabled me to pause and calm down and to really assess the experience and be more introspective than I had been previously and actually be aware of, you know, the experience of psychosis and the damage that it had caused in my life and then finally being able to examine that, investigate what had happened to me.

[00:16:22] Lucy: So depression actually gave you time for reflection?

[00:16:24] Guest: Yeah, it probably gave me too much time.

[00:16:27] Lucy: Too much time?

[00:16:28] Guest: Too much time, I think.

Yeah, I was depressed for about four to five years, and a lot of that was accompanied by, like, suicidality in the sense that, you know, if you’re  feeling depressed for so long, eventually you just want to escape. And unfortunately, the common thought is, oh, I should put myself out of my own misery, which is the thought that I ultimately had. And it wasn’t. It wasn’t that I didn’t want to be alive. It was very much, I want to be alive, but I want to be okay. If there was a switch, I could have flipped to be like, I’ll be happy again. I would have flipped it immediately. But I learn a lot. I learn a lot. And the experience was actually helpful. The first 21 years of my life was like I was on autopilot, you know, there was no emotional intelligence. There was no introspection or self awareness. And the beautiful thing about my depression was I had to navigate these awful emotions, but I had to work out a why I was experiencing them, what the causes were, and how do I mitigate these feelings or overcome them. And then that developed the self awareness. And it was the self awareness that ultimately got me out of depression.Well, there were a lot of things, but that’s one of them.

[00:17:50] Lucy: Can you speak a little bit more about how self awareness pulled you out of depression?

[00:17:54] Guest: Yeah. So I guess there are a few things that helped. Self awareness was definitely the development that I got from depression. Getting out of it was a little more challenging because sometimes you know why you’re experiencing something, but that doesn’t actually alleviate the experience itself.

So I guess when I understood where my depression had come from, my diagnosis and stuff, that made me feel a little more like, okay, well, there’s steps I can take to get out of this. So my first steps were psychology, psychiatry. And then, you know, I really doubled down because I didn’t know if I was going to get out of it. So I exercised a lot. I learned meditation, I tried reading. And in the end, I read for about two years straight. I read, I think, nearly 200 books in that time, and that pulled me out of it. And I think what it was, it was finding purpose. It seems like a really insignificant purpose, getting up and reading a book every day. But that was so different to what I’d been doing because I was stuck and trapped in this perpetual cycle of I feel awful, I want to die. And then just navigating that. But when I got to read a book, I was able to escape my own mind. So I’ve reflected on this a lot, and I think a lot of people like to escape their feelings, even people that haven’t gone through psychosis. For me, I recognized that my reading was like, positive escapism. Reading is quite a helpful and healthy thing to do. Maybe not 200 books in two years, but that pulled me out of it. And I think the thing that pulled me out was that I was making progress. Like, I set my goal, read 100 books in a year. When I achieved that, I was like, well, I can achieve things. I can give myself goals and reach them.

[00:19:49] Rachel: I mean, I’m a clinician, and so we hear a lot or talk a lot about purpose and its role in healing, but we often think about work or vocation, and that’s really just highlighted. Purpose can mean lots of things. Being able to set yourself goals, do something that health, you know, that gives you a space from the emotions that you’re finding hard, something else to focus on. It’s really lovely to hear that story. Thank you.

[00:20:19] Guest: No worries. My pleasure.

[00:20:22] Rachel: I think I heard you say back when you were telling us about that year that there was your help seeking led to certain things that weren’t very helpful. You know, there was lots of medications that didn’t really work for you and maybe some other things. Do you know what you would have wanted back then or something else in response to what you were going through?

[00:20:48] Guest: I think what I wanted was unrealistic. I really wanted someone to kind of be in the water with me whilst I was trying to stay afloat, because I feel like, you know, a lot of my family support and my friends were like, you know, kind of watching me struggle to stay afloat or, like, even drown, in a sense. What I would have wanted if I could have had it would have been, yeah, someone in the water with me, like a best friend that I could really just talk to about everything that I was going through, all of my thoughts, having, like, a sounding board for all of the things that I was going through. And I didn’t have that.

[00:21:26] Rachel: I think you said it was unrealistic. And what comes up for me when I hear you talk about someone in the river with you, is that what you said? in the water with you, is that kind of idea of witness?  Why do you think that’s unrealistic to have with ness when you’re going through something?

[00:21:48] Guest: I think it’s unrealistic in the sense that I may not have appreciated it even if I had it. So it’s almost a retrospective kind of analysis of what I would have wanted at the time. I don’t know if it would have been helpful. And it’s also unrealistic in the sense that from my experience, losing 95% of my friendship group based on that experience, I didn’t expect anyone to be with me all the time. But despite all of the supports that I did have, and there were extensive supports, the thing that really came, I realised eventually that it comes down to me. You know, my well being is my responsibility.

And unfortunately, one of the professionals in my life during my care said to me, oh, he’s unlikely to recover. That stuck with me for years. And I assumed that because my diagnosis was incurable and indefinite, I was like, well, I’m stuck with this for the rest of my life. There’s no chance of recovery. So I resigned myself to that idea. I thought, okay, well, this is me now. I’m gonna be unwell forever.

And then eventually it clicked in my head, if I may swear, fuck that, I’m going to recover. I want to take charge of my life. I want to restore myself in my own eyes and be the person that I want to be. And I always wanted to be who I was before, you know, optimistic and happy and confident and carefree.

And I did get that back, which I wasn’t expecting. But I’m also, like, 2.0, you know, like, I’ve learned more. I’m not on autopilot anymore. I’m reflective and introspective.

And if I had to do all of this again, despite, you know, almost ending my life and experiencing the weight and depth of psychosis, I would do it all again. And the reason I would do it all again is because it gave me who I am today.

[00:23:45] Lucy: You should be honestly so proud of yourself, because what that person said, that you’d never recover, that’s so damaging to try and write someone’s narrative for them, and not everyone would have the same motivation as you did and turn around and say, well, that’s not gonna be me. I’m gonna do things my way. You should be really proud of that for going with your intuition and what was right for you.

[00:24:12] Guest: I think my proudest achievement is surviving when I didn’t think that I could. I think that is my proudest achievement to date.

[00:24:24] Lucy: What would you say is your biggest learnings or takeaways from being in a state so unfamiliar?

[00:24:33] Guest: Wow.

My depression was kind of like this massive existential crisis for me. Before experiencing anything, I would have identified as an optimist and an atheist, and that was pretty much my entire philosophical identity. So coming into this crisis where I had all the human questions, you know, why are we here? You know, why am I here specifically? Is there a meaningful purpose to my life? How do I want to contribute to society? The big ones. And I think my biggest takeaway from that was I didn’t really find any answers, but what I did find was curiosity. And I started to develop the kind of core principles that make me who I am and the things that I look for in other people and the things that I try to uphold. And I think the four that I kind of settled on was kindness being the most positive way to navigate any relationship or interaction, even with strangers on the street. If you’re kind to them, they’ll probably remember that, and that could impact their day, and that may have a butterfly effect for the rest of eternity.

[00:25:39] Rachel: I love that.

[00:25:40] Guest: Yeah. And there’s like. I realised there’s, like 8 billion people on this planet, and if we all did one act of kindness a day, that’s 8 billion acts of kindness every day. Like, imagine how transformative that could be. The second would be curiosity, as I mentioned earlier, that innate human desire to question and challenge and kind of grow. And then the third and fourth would be self- awareness, which we’ve already kind of discussed a little bit. And the last one would be effective communication, which, admittedly, I’m not always great at.

[00:26:13] Lucy: So your whole experience and then going into that reflective period of your life taught you those four sort of pillars of your life, is that right?

[00:26:25] Guest: Yeah. I think it’s like BC in AD, right? I feel like my life has been divided into, like, pre psychosis and depression and post psychosis and depression.

[00:26:36] Lucy: That’s a great way of looking at it. I feel the same after psychosis, I felt like it was a second shot at life. It’s like life part two.

[00:26:45] Guest: Absolutely. Yeah.

[00:26:46] Lucy: So you spoke before about things that you did to help you. You spoke about exercising, meditation, and reading. Why was it those things that you chose?

[00:26:57] Guest: So I guess this was a lot of the professional advice that I was given that things like exercise can increase serotonin and those kinds of chemicals. And then reading was my kind of choice and purpose. And then meditation was passed down by my stepdad, who practices in Buddhism.

And really, for me, this was during my depression. This wasn’t during the psychosis. And I guess I tried everything because I really wanted to survive.

And I was like, okay, well, I have to try everything that I can to get through this. Otherwise, it’s the alternative, which would be the worst case scenario for everyone.

So I tried everything. And it wasn’t until I actually put in the effort to try different things that actually started to. I was like, oh, wow, they do help. You know, they didn’t help immediately. I found it really hard to exercise because I’d gained weight from the medications and that kind of thing. But when I did start to do things, it wasn’t immediately transformative, but over time, it amassed pride. I was like, okay, well, today I showered. I did one impossible thing I thought I couldn’t do. And then the next day, I was like, oh, go for a bike ride. Another impossible thing I didn’t think I could do. And then getting into that habit of achieving things each day made me really realize, you know, I can do more than I think I can do. Because, you know, some people may say, oh, well, you weren’t that depressed. And I’ll be like, well, you know, it was pretty awful and devastating. And, you know, I had no motivation to do these things. I was. I really didn’t want to do them. I didn’t want to listen to the professionals telling me that exercise was helpful because I was like, well, I’ve tried it before. It didn’t work, but I tried it again, and I tried everything again. I did the things I didn’t really want to do. And it took probably all of my willpower to actually do them. But they helped. Everything helped eventually, but it was my responsibility to kind of do this for myself, to take charge of my own recovery. So trying everything. I exhausted all options, you know, the meditation, the getting a routine again and even going to groups that headspace after years of not wanting to do them or maybe a year and doing all of these things for myself. Because at the end of the day, I’m like, well, this is my life. You know, I have potentially just one of these. So I kind of, like, owe it to myself to get better.

[00:29:34] Rachel: I guess I’m just sitting here wondering about where you found the willpower. At what point did you start to believe in life? Worth fighting for.

[00:29:47] Guest: This is pretty dark, but I will share it. So, after years of being depressed, I did make an attempt. And after that, I wouldn’t say I was happy that I survived, but I was like, okay, well, I did. So what does that mean for me? And then I challenged myself to. I was like, okay, well, either it’s gonna be that again or I really make the effort to get better. It’s an interesting question, because obviously that’s the answer that people will be looking for. My psychologist said to me about my anxiety. She said, okay, you feel like you can’t go out and shop. And she said to me, but you can. You can physically do that. It will cause you a lot of discomfort, and it’s awful, but you can physically go and do that. You can make yourself do it. And then I was like, I hate that you’re right, but you are right. So after psychosis and towards the tail end of my depression, it was anxiety that was the hardest thing to overcome for me because I knew why I was anxious, but I couldn’t work out how to solve it. My anxiety was like a physical nausea, like needing to vomit all the time. So that was, like, the last hurdle for me to kind of overcome was anxiety. And my psychologist was pretty transformative, you know, telling me that while you can do it, despite how uncomfortable it’s going to be, and then I started challenging myself, like, all right, I feel like I can’t do this. I’m going to do it anyway. And in the end, I realised my fear of the consequences of failing, pretty much. It felt like, you know, I was sincerely concerned with, if I try this, what if I fail? You know, what if I start to work again, but I can’t do it? That kind of mindset, that shift in, well, I can physically do it despite how awful it’s going to be, really helped.

[00:31:40] Rachel: And even though all of those small steps that you made contributed to some belief, maybe.

[00:31:47] Guest: Yeah, I think there’s this thing I do when I get stressed. There’s a video on YouTube called star size comparison. And it starts with, like, the moon, and it moves up to the different planets in our solar system, all the way up to the biggest star in the universe, and it’s huge. It’s like hundreds of millions or billions of miles across. That’s probably wrong. Don’t quote me. But it’s huge. And then they put the earth on it, and the earth is this tiny speck of sand against this massive goliath of a star. And I watch it when I get stressed because I’m like, it reminds me that I’m insignificant, but it also reminds me how significant I actually am. You know, the fact that I get to live this life and see the universe while I’m here and think about these great things that we get to think about reminds me that I shouldn’t care so much about the small things and not in a negative way, but in a, you know, it’s okay to not care so much and to try to navigate it anyway. Especially anxiety. That’s mostly when I would watch this video, is when I was really, really anxious and just remind myself that, breathe, you’re small. You’ve got this.

[00:33:01] Lucy: Very liberating way to approach life.

[00:33:04] Rachel: I just want to say I really enjoyed this conversation, and I’m so grateful that you’re with us today. We’d like to ask all our guests something about if they’ve seen or witnessed or experienced a person respond to distress. I wonder if you’ve got something to share about that.

[00:33:24] Guest: I do. I have an example that stuck with me for years now. There was a police officer, a woman, who responded to kind of a crisis that I was in. And she said to me, she was very authentic and genuine. And she just looked at me and said, kid, it’s gonna get better. She’s like, I’ve been through it. It’s worth it, you know, enduring it and sticking through it. And I didn’t believe her. You know, I was pretty hopeless and despairing. I was like, all right, whatever. You’re just saying this. But when I did recover and when I returned to wellness, I kind of remembered her conversation. I’m like, God damn it, she was right.

And I guess if I could instill any hope in other people, it would be as insurmountable, unsurmountable as it feels. It is worth enduring. And I often reflect, you know, if we look at, like, the purpose of life as a just a general thing, you know, it’s to survive, to reproduce and evolve. And I kind of thought, well, in a more human sentiment, it is to endure, to love and to change.

And I think about that a lot because, you know, I feel like we can get stuck, but change is ultimately how we get through. And enduring where we have to and spread love in a very simple way.

[00:34:44] Rachel: Endure love and change. What a beautiful way to finish our conversation today.

[00:34:54] Lucy: I just think you have so much to offer, and you do give so much hope to a lot of people, and that’s very special. So thank you for spreading that message today with us and anyone that’s listening.

[00:35:09] Guest: Thank you.

[00:35:16] Rachel: Okay. Well, Lucy, I’m keen to hear what you thought about that conversation because there’s so many things on my mind that I’ve noticed. I’ve thought a lot about throughout the talk, but also still sitting there now, what’s sort of on your mind after listening to this guest?

[00:35:35] Lucy: I loved this conversation. There’s been so many things that have stood out. I think the thing that I’ve been thinking about is how they were speaking about depression and how that period in their life was actually really helpful. They described it as being helpful because it gave them time to think about what had happened during the psychosis and gave them time to just pause. They spoke about how they arrived at the four pillars of their life and what was really important to them. They mentioned kindness, curiosity, self- awareness, and effective communication, which I think is just such a beautiful way to live. And, you know, we’re so busy in our everyday lives that sometimes we don’t get the opportunity to pause. So you can see that, you know, although the depression was really tough, it did serve a purpose in giving them a break. So I found that really fascinating. What were some of your takeaways?

[00:36:27] Rachel: Well, there was so much. I mean, the four pillars were pretty inspiring, actually. And the other thing that is really on my mind when I think about this conversation was just the importance of language or, you know, the power of words. And, you know, in my practice, in the way that I work, we talk a lot about holding a not knowing position, you know, and the importance of uncertainty. And although that can feel, you know, hard at times to sit in the unknown and to hold this position of not knowing, it actually allows an openness, whereas a knowing position or holding certainty about things just can close things down. And I was just thinking so much about the potential impact of hearing someone say, you’ll never recover from this. You know, how that could have really changed the outcome for this person. Our guest was able to really work against that and turn that around. So I was very inspired by this person’s ability to be able to take charge of their own journey and where they wanted to be and the life they wanted to live. This person’s ability to speak and talk about some really complicated topics and make them really understandable has made our conversation with them really easy. So I just want to say thanks.

[00:38:09] Lucy: Thank you for listening to our podcast. If you wanted to stay in touch or learn more about discovery college, please head to our website, discovery.college.

Jesse works at LifeConnect who offer suicide awareness training for the community. To get in touch, head to their website https://www.neaminational.org.au/services/lifeconnect/ or email them at lifeconnect@neaminational.org.au

Come and listen with:
Lucy (She/Her) – A big fan ice cream and storytelling

Rachel (She/Her) – Social Worker, Dialogical Practitioner, mad footy fan and wildly passionate about transforming the culture of mental health services to be person-led and human rights informed.

Incredible artwork @sharleencu_art

EPISODE TRANSCRIPT – The message of suicide

[00:00:01] Lucy: This podcast has conversations around different mental health experiences that may be distressing for some people. If that doesn’t feel like something you want to explore today, you might want to visit another podcast and come back to us another time.

[00:00:14] Rachel: discovery college acknowledges the traditional owners of country throughout Australia and recognises their continuing connection to lands, waters and community. We pay our respects to Aboriginal and Torres Strait Islander cultures and to the elders, past and present. They have never ceded sovereignty.

[00:00:32] Lucy: In this podcast, we share stories that help us learn from each other, connect us and inspire growth. We want to acknowledge that this way of being, of coming together to share knowledge and stories, is a tradition that has already existed on this land for hundreds of thousands of years as a part of the culture of First Nations people.

[00:00:51] Rachel: discovery college acknowledges the views shared in this podcast are about mental health experiences, but are not a substitute for professional mental health advice and support. The views in this podcast are not the views of Alfred Health, but are the views of the individuals we’ve had conversations with.

[00:01:07] Lucy: The stories we share on this podcast aren’t just stories, but memories of the people who have bravely shared their experiences with us. Remember to take care of yourself as you listen, as well as to take care of the stories that you hear.

[00:01:33] Rachel: Extremely Human is a conversation about the profound experience of extreme states. When we speak about extreme states, we want to explore a more humanistic way to understand people’s experiences that aren’t always shared by others.

[00:01:47] Lucy: Each extreme state holds different meaning for each person, including those related to psychosis, depression, grief and addiction. As we chat with a variety of humans, we explore the important question how can we respond to distress with greater compassion and humanity?

[00:02:17] Rachel: This is a conversation with Jesse about suicide. Jesse shares his own experiences of suicidality and offers different ways we can have more compassionate conversations about it. We think about suicide as a natural physiological response to distress that can contain a message for an individual. We explore some of the misunderstandings around suicide, the importance of language, and allowing people time and space to process and heal.

Hello Jesse, welcome.

[00:02:46] Jesse: Thanks for having me.

[00:02:47] Rachel: Yeah, you’re welcome. We’re really excited about our chat today. Would you mind telling us a bit about yourself and maybe what brought you here to the episode?

[00:02:55] Jesse: Yeah, for sure. I work for a service with Neami National, which is a mental health. Our service is called Life Connect and we’re a suicide awareness service. So we give trainings and things to clinicians and mental health workers and just general community sometimes as well. I’m a lived, experienced practitioner there, so I have a lived experience of suicidality. We’re actually a whole lived experience team at the moment. You know, we’ve got people who might be bereaved by suicide, people who’ve had attempts, and people who have supported family members through that experience as well. So we get a really good, vast knowledge and input into our content and what we talk about as well in that way. So. Yeah.

[00:03:38] Rachel: Wow, what important work you’re doing.

[00:03:40] Jesse: Yeah, it’s good. It feels nice to do.

[00:03:44] Rachel: I know you’ve listened to some of the episodes, so you know that we ask this question at the start of every episode. Have you got a story that you can share about a disproportionate reaction that you or someone else you know might have or have had?

[00:03:58] Jesse: Yeah, well, yeah, I was going to talk about something I do or that I just have that goes on for me that I can’t get my head around because it doesn’t make logical sense to me and it’s just a part of my life that I have to live with. But that’s like. I’m just ridiculously scared of wasps.

[00:04:15] Lucy: Oh yeah, fair enough.

[00:04:17] Rachel: They are scary.

[00:04:19] Lucy: I’ve heard that they track you.

[00:04:20] Jesse: That’s what it feels like.

[00:04:22] Rachel: Is that correct,  do they track you?

[00:04:24] Jesse: That’s my experience.

[00:04:24] Lucy: That’s probably something I got told when I was like twelve and it’s just stuck for the rest of my life.

[00:04:29] Rachel: But I think I’ve just adopted Jesse’s disproportionate reaction.

[00:04:34] Jesse: Sorry. So, yeah, just whenever there’s a wasp around, I’m running away, I’m squealing. I’m just doing all that kind of stuff. That’s pretty embarrassing for a full grown person. The other thing is I’ve been stung by wasps and it’s not that bad. Like, it hurts, but it’s not like debilitating or anything. It’s like, I don’t. And it didn’t help. I was just like, nah, I still feel the same way. Yeah. It wasn’t exposure therapy or whatever.

[00:04:58] Lucy: Yeah.

[00:04:58] Rachel: See, it’s a good example of disproportionate being very subjective.

[00:05:04] Jesse: Yeah.

[00:05:04] Rachel: Because to me that seems pretty proportionate.

[00:05:07] Jesse: Oh, really?

[00:05:08] Rachel: Running away in screaming.

[00:05:09] Jesse: I don’t think the teasing makes it feel disproportionately.

[00:05:12] Rachel: Right. Yeah, yeah, yeah, yeah. Thanks for sharing.

[00:05:18] Lucy: We’re talking about extreme states. We wanted to ask what extreme states meant for you in the context of your work and your experiences.

[00:05:26] Jesse: Yeah, it’s a really interesting question. I really like the question to begin with. It raised a lot of kind of conflicting thoughts for me. As well. When I’m talking about, like, the work that me and the team that I’m in do around suicidality, it definitely is an extreme state and a really distressing place to be in, for sure.

There’s also something we talk to in the training as well, that it’s a… We never know quite how the word this, but it’s. It’s a. It’s a natural, like, physiological response to distress as well.

[00:06:00] Lucy: Can you say a bit more about that?

[00:06:02] Jesse: Yeah, so, like, the way that I’ve been thinking about it recently in particular is like that. It’s essentially like biological messaging kind of thing. So it’s. It’s trying to tell us something or trying to tell the individual something. And I see anxiety and depression as the same kind of thing as that. Like, these are messages that we’ve kind of labeled as disorders as well. That’s more about. Yeah, like, the pain that somebody’s feeling or the distress that they’re in. And I think suicidality falls into that camp as well. That’s where there’s a bit of conflict for me, but it’s like, it’s an extreme place to be. At the same time, we’re trying to normalize that experience and validate that experience for people. So it’s a little bit in, it’s got a foot in both camps, in a way. And that’s often what suicidality is like. It’s really gray and really, there’s a lot of nuance that you need to get into. My suicidality kind of really became more, I don’t know what the right word is, like, more intensified or whatever when I was. Cause I have, like, an anxiety disorder, but that ended up into what they call, like, panic disorder as well. So was that real intense physical sensations of fear and anxiety and that kind of stuff, and then you become afraid of the fear, and then you’re getting those same feelings and it just becomes all the time, essentially, it’s like a panic attack all the time.

So for me, my, that was kind of the extreme state that kind of more caused that intensification of suicidality. Yeah. Suicidality can kind of come about from a lot of different angles and factors and things. But, yeah, for me, it was that real, you know, I just can’t take these sensations anymore. Like, it was like a real escape kind of thing.

[00:07:55] Lucy: Yeah.

[00:07:56] Jesse: Again, yeah, it’s quite complex and has a lot of different sides to it.

[00:08:01] Lucy: What do you think is some of the things people get wrong about suicidality?

[00:08:07] Jesse: Well, they get wrong. So there’s often a lot of, I guess, fear from the person who’s in that more supporting role as well. There’s a lot of discomfort and it’s like a scary, uncomfortable thing to talk about. Like, we’re never saying that’s not the case. Like, that fear and discomfort that comes up from that person who’s in that supporting position, I think is felt by the other person who maybe is in high distress and needs that help. So, you know, we’re kind of in our trainings that we do and things, we’re kind of just asking people to start looking at that essentially within themselves.

As a clinical worker, as a family member, as a parent, as a whatever you are, to whoever. It’s just something that we notice a lot. And we think it plays into the, you know, the stigma and the taboos that are around suicide as well, in terms of it’s just not talked about very comfortably by anybody, and that’s understandable. But then we’re also saying we do need to work through that, though, because people are losing their lives, obviously, so. And what we find is pretty much every room that we’re in there is lived experience as well, you know, of people have been through it because it’s so common. You know, there’s the, like nine people a day statistic that.

[00:09:24] Lucy: Is that just in Australia?

[00:09:26] Jesse: Yeah, that’s the Australian statistics. Yeah. So, you know, and I think. I think it’s like maybe for every person who does die by suicide, there’s like maybe 200 other people who were affected by that as well. So we’re talking about huge numbers of people and then people who would have overlap and things. So we’re really trying to be mindful of that when we go in and talk about this stuff as well because, yeah, people have often had experiences around suicide themselves. It’s just really that wrapping your arms around people and just, just trying to understand everybody’s experiences as well.

[00:10:00] Lucy: It just shows how important the work is that you’re doing. And, you know, you’re probably part of a bit of a changing culture as well, of starting these conversations.

[00:10:11] Jesse: Yeah, we hope so. I guess one of the key things that we try and talk about is that, like, at a bare minimum, like, just try and have a conversation still. You know, there’s those myths around. You might put the idea in somebody’s head and all this kind of stuff. It’s like, we know that’s not true and we know it’s protective to have conversations. So at the very least, like, let’s just try and do that.

[00:10:33] Rachel: Are there other myths that you try to bust or?

[00:10:36] Jesse: Yeah, there are a little bit. I think a big one is the, like, suicidality only comes from mental illness and probably more specifically depression when it’s often, you know, big life stresses that might, you know, cause somebody to take their life. Like, we know relationship breakdowns are a big one as well. So.

[00:10:57] Rachel: Financial problems.

[00:10:58] Jesse: Yeah, financial problems, yeah. So it’s just those external stresses are often actually people’s tipping points. Definitely not saying. It’s not a potential thing that can come from somebody who’s, who has a mental illness. I can talk about this without being like, like sounding like I’m fear mongering, but it just really doesn’t discriminate.

[00:11:21] Rachel: No, I don’t think you’re fear mongering.

[00:11:22] Jesse: You know, so, yeah,.

[00:11:24] Rachel: I think you’re talking about the human experience.

[00:11:25] Jesse: Yeah, it is, part of the human experience.

[00:11:26] Rachel: Yeah. And I think, you know, even just mental health difficulties don’t pay enough attention to those things.

[00:11:34] Jesse: Yeah.

[00:11:34] Rachel: Relationship breakdown or illness or finance. You know, there’s the social determinants of well being or ill health.

[00:11:43] Jesse: That’s my experience as well, of, like, my lived experience is very much of, you know, I was like, just like a middle class young dude who just, I thought everything was fine. And again, it’s just that lack of education thing. Like, I definitely didn’t know about suicidality or anything like that. Like, not. And you know what it is, but you don’t know the experiences that people have and the differing experiences and where it can come from and that kind of stuff.

[00:12:11] Lucy: I was wondering what it’s given you. Being a peer worker of someone who’s had lived experience and now working with people who are going through that, is that been a big change in your life?

[00:12:24] Jesse: It does change what you’ve been through. Well, for me, I should say, for me, it’s changed what I’ve been through into something that’s a lot more like, I’ve gotten a lot of purpose out of it now because after I, I was in hospital and then I just spent like, four years, like, my dad has a farm. I just spent four years working on his farm, just like out in the, in the hills doing that.

[00:12:49] Lucy: How was that?

[00:12:50] Jesse: So, yeah, it was good, but I didn’t like, it’s hard physical work. I didn’t like that very much, but it was really good. Like, it was a great opportunity for me to kind of just, you know, I was so dissociative through that time. It was like doing that physical work actually got me back into my body a bit and all that kind of stuff. So it was good in that way. It was just low pressure as well. Like, low pressure. I could just turn up when I wanted to.

But, yeah, it was a bit like, it felt like a huge risk or something for me to kind of go into this work in the sense of, like, it’s really hard in lived experience work. Like, you don’t know when you’re ready, you don’t know when you’re not. Like, it’s a bit. It’s pretty ambiguous of like, yeah, that thing I was talking about before, it’s like, well, am I recovered or am I still doing it? Or, like. Like, I didn’t really go back to what my life was before in a way. Like, I really eased into it. So I see, yeah, a lot of situations where people are, like, just thrown back in and I think, like, time is such a big part of that healing or recovery as well. Like, not really like that time heals all wounds kind of thing, but more like, it’s just not linear. Like, you need. You might have a spurt of like, okay, I feel like I’m getting better. And then it just stops for, like, six months and you’re like, what’s going on? I can’t. I’m stuck. The expectations around when people are back to their selves or back to work or whatever, the pressures around that are just ridiculous to me.

[00:14:26] Rachel: Sorry. It does come up a lot, you know, around the flawed-ness of the word recovery.

[00:14:31] Jesse: Yeah.

[00:14:31] Rachel: You know, because it does imply we’re going back to something.

[00:14:35] Jesse: Yeah, yeah.

[00:14:37] Rachel: Well, it’s not implying it’s what it means.

[00:14:39] Jesse: Yeah, it does.

[00:14:39] Rachel: You know, recovering a part of yourself or your life.

[00:14:43] Jesse: Yeah.

[00:14:44] Rachel: But healing’s got a different.

[00:14:46] Jesse: It does, yeah.

[00:14:47] Rachel: Different meaning to me.

[00:14:49] Jesse: Yeah. I did hear one definition of recovery that I really liked from what’s his name. It’s that trauma and addiction specialist. Gabor Mate. Yeah. He was like, yeah, recovery means to find something again. And he was talking about in the sense of, like, finding your authentic self again. So, like, the person who you’re not really putting on a facade or a mask, like, you’re just being yourself and being really accepting of yourself and compassionate towards yourself and that kind of thing.

[00:15:20] RachelOh, that makes sense.

[00:15:21] Jesse: Yeah, I like that one a bit better.

[00:15:30] Rachel: Jesse, what I’m wondering about if your thoughts around organisational or macro factors that really get in the way of people being able to respond, professionals or otherwise, with people in that kind of distress.

[00:15:46] Jesse: Yeah. I do have some thoughts on this. Firstly, I’ll say that’s how I do see it. I do see it as, like, system issues. And I don’t think people are, like, trying, like, trying to be dismissive or, like, not form a connection with somebody. I think it’s just the way that this, these systems kind of work at the moment. But my opinion is, is like, you know, things like risk assessments and all that kind of thing around, in particular around suicide, they’re just, I feel like they’re becoming a way that we try and predict somebody taking their life, and that’s impossible to do. Like, it’s. You just can’t predict that. And it just feels a bit to me like we’re kind of essentially wasting time and resources trying to get this information, to write it, like, to fill in a form and that kind of stuff. Like, I think, you know, if I came to you and I was like, I’m having a really hard time, like, you, if it was normal life, like, you wouldn’t get out of form. You know, like, it’s just not how we work as humans when we’re interacting. Like, we wouldn’t get out of form and be like, well, I have to fill this out now. Like, it just doesn’t make sense in that way, even to me. I was reading a research paper, and there was a bit of a heartbreaking statistic to me in there, which was, I think it was two thirds of people who present to ED or whatever it was, who get categorized as low risk end up taking their lives.

[00:17:13] Rachel: Right.

[00:17:14] Jesse: In my experience, when I ended up, because I was in the psych ward for, I don’t know, a week or so, and I didn’t tell anybody in there that I was suicidal. Because, like, I didn’t. I just didn’t know what would happen if I did. Essentially, it was the main fear there, you know, that I would have been in the low risk category because of, I would have said no to that question. So there’s just a lack of trust. And I think that for me, that comes down to, yeah, we are just got the clipboard form, and it just feels also medical and that kind of thing. Yeah, I do think the way that we’re doing things has a great deal of potential to cause harm, and that just doesn’t feel good enough, really, to me. You don’t need to drop everything and go to the emergency department, is what we would say. We, you know, like, you just sit there and try and hear what’s been happening for them or to them, you know, to try and get a bit of understanding also, just to let them get that off their chest. Sometimes when people get it off their chest, you know, if we’re talking about the medical model, they might go from a high risk to low risk in that conversation. So we can’t predict it in that way.

[00:18:24] Rachel: But I also wonder about, from an organizational perspective, it kind of reflects this idea that services are responsible to make sure, yeah. Someone doesn’t end their life, and, you know, and if they do, there’s a sense of responsibility or blame.

[00:18:42] Jesse: Yeah, for sure. And this can be a bit of a hard thing to say or for people to hear, but it’s like, I don’t know, like, it’s not our decision at the end of the day as well. You know, like, we do need to give people their autonomy and that kind of thing. And, you know, I don’t think this, like, the challenge of suicide is going away, away ever. You know, so we need to just, again, that kind of panicked intervention mode is really quite a, I think it’s quite a discombobulating place for the person in distress to be as well, when other people are, like, panicking around you and being like, we’ve got to do this, we got to do that. Like, you need some steady heads around you and, like, some calmness and, like, people to just listen to what you’re saying and validate it.

[00:19:30] Rachel: I guess what I’m hearing you say is presence.

[00:19:34] Jesse: Absolutely.

[00:19:35] Rachel: And connection and compassion is kind of really more important than.

[00:19:42] Jesse: It’s definitely more important for the person who’s struggling. Yeah. And I just think that should be the priority at all times basically.

[00:19:50] Lucy: I was just thinking before how we were talking about how important it is to listen to someone and let them express what they’re going through. But if you’re really worried about someone and they’re not talking, how do you approach that conversation?

[00:20:07] Jesse: Yeah, this is, this comes up a bit, this kind of thing.

It’s really tricky. It’s the answer, essentially. And I think this is really hard because it takes a lot of patience and quite a bit of trust in somebody who’s saying, I’m suicidal. You might ask, hey, are you thinking about suicide? And they might not want to talk about it. We’ve heard of people getting angry as well. Like, how dare you think that that kind of thing comes up as well. But what we hear more often than not is, you know, maybe a week, maybe a month later, they’ll.

They’ll know that you’re the person who is up for the conversation when they can have it essentially, you’ve identified yourself by asking that question as a. As a safe, caring person who wants to chat about this, you know, so it doesn’t.

That’s where I think there’s that, you know, we need to do something right now kind of thing. There definitely are situations like that, I should say, where people just need help right away, and it’s quite dire, but a lot of the time, it’s not that, actually. And there is a bit of time to work with. It doesn’t have to be so rushed. And that’s where we’ve got to put trust in somebody that they’re gonna, you know, stick around for a period of time and work on this and, you know, hopefully come back to you and be like, you know what? I am thinking about that. You know, but it might be sometime later as well.

But that’s why we’re saying, ask the question. Yeah. If you’re noticing, you know, behavioral changes or things or that kind of thing, like, go ahead and ask. Because even if they’re not up for it.

[00:21:48] Lucy: Yeah. So even if the conversation feels a bit hard or it feels a bit clumsy, it’s better to have it than not.

[00:21:54] Jesse: Yeah, definitely. Yeah. Yeah.

[00:21:56] Rachel: I really liked how you just talked about trust then, because, you know, I, you know, it feels good to me. But oftentimes when you. When you hear the conversations about trust, it seems very one way. It’s expecting the person in distress to trust the person that they’re seeking help from, but it doesn’t seem two directional or bi directional. So I really liked you talking about that.

[00:22:23] Jesse: Yeah.

[00:22:24] Rachel: That it’s also about trusting that direction.

[00:22:26] Jesse: Yeah. Expecting them to get better, essentially, for themselves in particular.

You know, I think a lot of the time, there’s an expectation around people who are going through a hard time or, you know, might have repeat episodes of mental illness or in, you know, more intensified times of that, that there’s. There’s just no way they’re ever coming back or something like that. Like, it’s.

Again, it’s just not true. There’s heaps of people who live with managing suicidality on a daily basis, and then they live, you know, for a normal lifespan kind of thing. So it just doesn’t really work like that. It’s not like a. You feel suicidal and then you act on it straight away. Like, it’s not. It doesn’t work like that very often at all, actually. I think those things where we’re like, we got to fix this right away is more that person bringing in their own fears around that situation.

[00:23:21] Rachel: Mm hmm.

[00:23:22] Jesse: Yeah.

[00:23:24] Lucy: I was wondering if we could chat a little bit about some of the outdated language that we hear in terms like committed suicide and sort of why we don’t use phrases like that anymore. We don’t use language like that anymore.

[00:23:38] Jesse: Yeah. Um, for sure. I think the, you know, I think the main things that we talk about. Yeah. Are those, you know, committed suicide, and it did used to be a crime to take your life and, you know, definitely was a sin in religions and things like that. So it just has that kind of negative stigma to it around you’re. You’re a criminal or you’re a bad person. It’s like, it’s an immoral thing.

Yeah. It’s just, it’s more about thinking about where these things come from and.

[00:24:07] Lucy: Yeah.

[00:24:08] Jesse: why they might cause somebody to kind of internalize that stigma more, which, again, means they probably are less likely to reach out for help, and then the other ones are around attempts, like the successful or failed suicide attempt as well. Like, again, we’re just, just wanting to try and stay away from using language that has, like, positive or negative connotations, like just keeping it more factual to what happened. Like, just suicide attempt is fine, you know.

Yeah. Taking your own life instead of committed suicide, just really honoring that person with Just factual language around it.

[00:24:44] Rachel: Without the moral laden.

[00:24:49] Jesse: Yeah, yeah. Like, putting judgment on it, essentially.

[00:24:52] Rachel: Yeah, yeah.

[00:24:53] Lucy: We don’t really think about what we’re saying or the history of where it comes from. It’s just so embedded into our everyday language.

[00:25:00] Jesse: Yeah. And it’s in media and tv and movies and everything.

[00:25:12] Lucy: What do you think is important to know based on your own experience about suicidality?

[00:25:17] Jesse: I think it is really individual for each person, and I think that’s where I’m hoping, you know, lived experience will play a big factor in how we approach suicidality as well. Like, learning from that. I know, for me, suicidality or any kind of distress that I’m feeling, I really just need to talk about it and get it out. It’s almost like that, you know, just, Blegh, big hole, spew all that information out and all those feelings and just, yeah. Having somebody just listen and take it on and try and trying to hold space for that, like, the ambivalence that people experience with these massive feelings as well. Because, you know, when I was going through all of that really intense time, like, I wanted to escape. I wanted to get out of those feelings that I was having. But then also I was just like, I’m really afraid of dying, though, as well. You know, so it’s like those two things that they don’t really make logical sense together in a way, but we very much can experience things like that as well.

[00:26:24] Lucy: Jamie, who came on the podcast, he did, like, a reframe when he asked one of the young people he’s working with, he said, do you want life to end or life as you know it to end? And I’d never heard that before, and it kind of blew my mind. I was like, that’s such an interesting reframe.

[00:26:41] Jesse: Yeah, definitely. And that’s why, like, I don’t know. For me, yeah, it’s just so different for everybody. But for me, that kind of happening and the kind of, I don’t know, like, I got my ass handed to me and that period, it felt like I just was, like being in a psych ward. Like, you’ve kind of lost, like, in your mind, you’ve lost everything, essentially, as well. Like, I’ve lost all my livelihood. Like, I’m only allowed out of here an hour a day or whatever. Like, it’s that kind of thing. And you’re like, it’s just all over. And that ends up, for me, that ended up being the best thing that could have happened, though, because I was, you know, just. I was on a path where I was just disregarding all of this stuff or in denial, really.

So, yeah, kind of getting that experience of, like, you don’t have a choice. You have to stop and. And work on this. Like, my. You know, my bodily systems were just like, nah, we’re shutting you down.

[00:27:41] Lucy: Yeah, right.

[00:27:41] Jesse: And that ended up being so good because it’s just. My hand was forced. I had to do something about it.

[00:27:48] Lucy: That’s sort of what you meant at the beginning of. It’s a sign that you need to change.

[00:27:53] Jesse: Yeah. It’s a message about your current circumstances are not working for you. And that’s what you were just talking about. It’s like, yeah, that’s. That’s a really good way of saying it. Like, essentially, nobody really wants their life to end. It is their life as they know it. It’s their circumstances that they’re in. It’s the pain that they’re feeling. It’s these kinds of things that we are trying to get away from.

[00:28:18] Rachel: Yeah. It’s really a wish for death, is it?

[00:28:21] Jesse: Yes.

[00:28:21] Rachel: It’s much more about unable to tolerate the continued suffering. And how about people around someone in distress or experiencing suicidality? What have you learned from your own experience or in your work that they need or what helps equip them?

[00:28:38] Jesse: Well, yeah, one part of it that I’ve already talked about is definitely that just examining your, your own discomfort around the conversation, I think, is a really big part of it. But then I think also, you know, we’re very quick to, I guess, try and jump in with solutions or reassurance or all that kind of stuff. And, yeah, one of our messages is just like, try not to do that.

Like, just, again, just sit and listen. Like, you don’t have to have input. You don’t have to agree with what people are saying. Like, all of this stuff, like, just try and, yeah, practice empathy and, yeah, just the act of trying to understand where they’re coming from is really important, I think. But, like, some of the, when I was going through really hard times, like, I remember one time in particular where I was having a really intense, panicky time. And at that point we didn’t actually know what was going on with me. So it could have been something physical as well. Like I was getting light headed and blah, blah, blah. But we called an ambulance one night to come and check on me because I didn’t know what was going on. And everybody’s doing stuff and, like, trying to get that. And my friend just came, put his arm around me and just sat there and I just broke down then. And at the time, didn’t think much of it apart from that. But, like, looking back now, I’m just like, I don’t, I don’t remember much from that time. I really remember that moment for some reason. So it’s just that being there, that’s kind of it. There’s just no real formula. It’s just like, just be there as a person.

[00:30:22] Lucy: It’s been an amazing chat, Jesse, but before we let you go, did you want to tell us about how people can find life connect or.

[00:30:30] Jesse: Yeah, so we are kind of based in Heidelberg in the east of Melbourne. And we cover from, you know, all the way up to Whittlesea, down to like, Yarra Glen way as well. So we’re covering a big, big area and kind of the east of Melbourne. Neami also has other suicide prevention services and trainings around the country as well. Essentially, you can just search for life, connect, and there’s a phone number or probably emailing in is best. And yeah, you can get in touch to book us for really any purpose. Just if you want to have a training session around suicide, it doesn’t really matter who you are. You don’t have to be a mental health professional. We can do it for, you know, we can do it for carer groups. We could do it for parents, like, as we can adapt and kind of work with any group. Yeah. If you get in touch with us, we can put you on a mailing list. We have these events we call single stays, which is a funny name. But that’s really, we do the training, and anybody from any walk of life can come along. It’s just an open day for anybody to turn up to the training, so.

[00:31:38] Lucy: All right, Jesse. Well, thank you so much for coming in today.

[00:31:41] Jesse: Thanks so much for having me.

[00:31:42] Lucy: Thank you for being someone that’s willing to have hard conversations that a lot of people find very difficult to have. So, yeah, you’re doing amazing work.

[00:31:51] Jesse: Thank you. Thanks, both of you.

[00:31:58] Rachel: Wow. Luce. I have thought so much about this conversation with Jesse. You know, I’ve been in this area for a long time, and I can’t really remember over time where these kind of conversations would have been possible.

So it’s really, you know, kind of, it makes me feel good.

[00:32:17] Lucy: Yes.

[00:32:19] Rachel: That suicide is becoming less secretive or shameful or taboo and something that can be explored and that there can be a meaning for someone in their life about it.

[00:32:33] Lucy: It gave so much hope, and he reframed so many things and put to bed so many myths.

I walked away feeling like I could open up those conversations about suicide with people.

[00:32:46] Rachel: What do you think it was about the conversation that gave you more confidence? Was it about the language? Cause Jesse talked a lot about how we use language in this space.

[00:32:55] Lucy: I did love the takeaways from the language, but I think the thing that stood out for me the most was how Jesse saw suicidality as a message, a biological message that could be alerting someone that things are a bit off, and maybe something needs to change. And I think that’s what we think about sometimes when we think about something like anxiety, it’s like, oh, you’re feeling anxious. Maybe your body’s trying to alert you about something. But we don’t always see suicidality like that. And I think that just makes so much sense to me.

[00:33:31] Rachel: Yeah, you know, we talk a lot. Well, we have talked a lot. I think, about fear based practice, and that was something that came up in Jesse’s talk with us. But what more came up was courageous practice.

[00:33:45] Lucy: Yes. Also, how he was saying, sometimes you need to put trust in the individual, that they’re gonna get better for themselves.

[00:33:53] Rachel: I think courageous practice is exactly what you just described. You know, having belief and trust in an individual knows what’s best in their life and giving people the opportunity to work that out. And, you know, fear based practice means that we can’t tolerate that and we end up taking over someone’s life or intervening in the best intentions.

But, you know, it’s probably in response to the fear that we feel rather than what might be best for that person. You know, I really just am glad that there’s people, practitioners, services like Jesse out there having conversations like this.

[00:34:39] Lucy: Yes. Thank you so much for coming on, Jesse.

Thank you for listening to our podcast. If you wanted to stay in touch or learn more about discovery college, please head to our website, discovery.college

Check out Mary’s Book here: https://www.madnessmademe.com/

Come and listen with:
Lucy (She/Her) – A big fan of cream and storytelling

Rachel (She/Her) – Social Worker, Dialogical Practitioner, mad footy fan and wildly passionate about transforming the culture of mental health services to be person-led and human rights informed.

Incredible artwork @sharleencu_art

EPISODE TRANSCRIPT – A difficult gift

[00:00:01] Lucy: This podcast has conversations around different mental health experiences that may be distressing for some people. If that doesn’t feel like something you want to explore today, you might want to visit another podcast and come back to us another time.

[00:00:14] Rachel: discovery college acknowledges the traditional owners of country throughout Australia and recognises their continuing connection to lands, waters and community. We pay our respects to Aboriginal and Torres Strait Islander cultures and to the elders, past and present. They have never ceded sovereignty.

[00:00:32] Lucy: In this podcast, we share stories that help us learn from each other, connect us and inspire growth. We want to acknowledge that this way of being, of coming together to share knowledge and stories, is a tradition that has already existed on this land for hundreds of thousands of years as a part of the culture of First Nations people.

[00:00:51] Rachel: discovery college acknowledges the views shared in this podcast are about mental health experiences, but are not a substitute for professional mental health advice and support. The views in this podcast are not the views of Alfred Health, but are the views of the individuals we’ve had conversations with.

[00:01:07] Lucy: The stories we share on this podcast aren’t just stories, but memories of the people who have bravely shared their experiences with us. Remember to take care of yourself as you listen, as well as to take care of the stories that you hear.

[00:01:33] Rachel: Extremely Human is a conversation about the profound experience of extreme states. When we speak about extreme states, we want to explore a more humanistic way to understand people’s experiences that aren’t always shared by others.

[00:01:47] Lucy: Each extreme state holds different meaning for each person, including those related to psychosis, depression, grief and addiction. As we chat with a variety of humans, we explore the important question how can we respond to distress with greater compassion and humanity?

We sat down to chat with Mary O’Hagan, who’s currently the Executive Director of Lived Experience in the Department of Health in Victoria. Mary shares snippets from her memoir, “Madness Made Me”, and speaks about how value and meaning can be derived from experiences of madness. We ponder what it could look like if communities looked after each other and created space for people in distress.

Alright, Mary, thank you for coming in, joining us, I was wondering if you could share it just a little bit about yourself, what you’re passionate about, anything that you feel like you want the listeners to hear.

[00:03:00] Mary: Yeah, so I guess the key thing listeners might want to know is that I have my own lived experience of mental distress, and that occurred at a fairly discreet time in my life between about the ages of 18 and 27.

I was pretty involved in the mental health system for most of that time, and it had a hugely disruptive impact on my life. Since then, I haven’t had any major distress, and I’ve been working in the mental health area trying to bring about the kind of change that I thought was necessary based on my experience of using services and just on my general experience of mental distress and of the way that society and people who are looking on respond to it.

[00:04:00] Lucy: Sounds like the perfect person to have on the podcast, then, because that’s what we’re trying to do. That’s what it’s all about.

[00:04:07] Rachel: Mary, I think we’ve kind of let you know about this, but we try to ask all of our guests a bit of a starting question, which is a bit different to talking about extreme states, but we try to think about how different people might have disproportionate reactions to events or things that happen in their life. And we’re wondering if you’ve got a story about something like that.

[00:04:32] Mary: Yeah, well, I can flare up quite a lot.

I don’t do it that often. I probably did it more when I was younger. I flare up when things like when the computer is not working, I can start yelling at the computer.

[00:04:48] Lucy: The spinning wheel of death is the worst thing.

[00:04:50] Mary: Yeah. And when I’m on the phone to the bank and I’ve been waiting for 45 minutes and I say, I want some help with something, and they say, we can’t help you, I can get a little bit heated at those moments. So, yes, I do have disproportionate responses, and it’s one thing that I’d really like to change about myself if I could, but it’s very difficult because I find this flare up actually happens very quickly before you actually have time to think, I guess. Yeah, it’s kind of very quick and very quick to dissipate as well.

[00:05:38] Rachel: So it’s hard to interrupt when it’s..

[00:05:42] Mary: Yes, I think it is very hard to interrupt. In fact, if I took a really concerted effort at doing that, I might be able to, but it doesn’t really happen often enough to do it, and it hasn’t had a big impact on my relationships. My partner doesn’t like hearing me go on about the computer or the bank or whatever in the next room very much. But no, it hasn’t been hugely disruptive to my life, but it’s something that I’d really quite like to be able to modify, among other things, about myself.

[00:06:23] Rachel: It’s pretty human, though, don’t you?

[00:06:24] Mary: Yeah, yeah, it is.

[00:06:28] Lucy: Mary. So we’re chatting in this podcast about extreme states, and that means different things to different people. I was just wondering what it meant for you, if it had any meaning at all, what comes to mind?

[00:06:43] Mary: Well, I guess in my life you can be in extreme states when you’re dreaming.

[00:06:49] Lucy: Yeah, actually that’s a great point.

[00:06:51] Mary: And in fact, someone once said to me, well, people get psychotic every night when they’re dreaming. So I think that’s quite an interesting take on it. I think I’ve been in extreme states when I’ve been in grief or when I’ve been in a state of psychological injury. Obviously, that sends you into a state that is more extreme than your day to day reality. And then I guess the big experience of extreme states I’ve had was that those nine years when I was experiencing my existential crises, major mood swings and psychosis.

[00:07:43] Lucy: Was that something that you would want to talk about?

[00:07:46] Mary: As in, oh, yeah, talk about it. I’ve spent my life talking about it, so it’s no problem talking about it. Yeah.

[00:07:52] Lucy: What was that like? Nine years is a long time to be in an extreme state.

[00:07:57] Mary: Yeah, well, I was in and out of the extreme states. I wasn’t in them constantly for nine years.

[00:08:05] Rachel: Can I just ask, before you tell us more about that, Mary, I wonder what you think about the use of the term extreme states and as an alternative to other ways we might describe these experiences.

[00:08:17] Mary: I quite like the term extreme states. I find mental illness a problematic term.

[00:08:26] Rachel: Why is that?

[00:08:27] Mary: Because the idea that this is an illness is just one model or one way of understanding these extreme states. And I think that people really need to be able to decide for themselves what having their own explanatory framework or their own understanding of what the experience is and why it’s happening. Unfortunately, once you get into the mental health system, you’re told this is what you have, and there isn’t much opportunity often, for people to explore other ways of understanding it.

[00:09:15] Rachel: I think I heard you say at the start that you’ve been working for many years now trying to cause change in the system. Is that kind of some of the changes you’re trying to see happen?

[00:09:28] Mary: Yeah, I think really, in a way, the change in the way services and society respond to people at some level is based on how they understand the experiences that people are having or the behavior they are showing. And so I think it is quite important that we challenge the way the clinical worldview and society have viewed these experiences, because that kind of becomes the fundamental platform on which all service and societal responses are built, in the west at least, and actually in many other cultures, madness or whatever you want to call it, has been misunderstood, stigmatized, and people have experienced quite a lot of discrimination. The reason for that goes to the way people understand those experiences.

Now, for instance, in Maori culture, and you probably tell by the way I speak, I come from New Zealand. There is a term called matakite, which is really loosely translated as a difficult gift. And it’s used to describe a series of experiences which might include psychosis. And in that translation, you can see that there is something positive in that experience, in the cultural understanding of that experience.

And when you have some, but an understanding, that’s also an edgy, difficult experience. So if you have that cultural understanding, then you’re going to treat people with more respect, and the potential for stigma and discrimination really is much reduced.

[00:11:40] Lucy: Yeah, that’s so fascinating. I’ve never heard it being described as a difficult gift before.

[00:11:45] Rachel: Right. It makes me think a lot about kind of Buddhist beliefs around adversity.

[00:11:51] Mary: Yeah.

[00:11:52] Lucy: But also the power of language. I think I used to think, oh, they’re just words. They can’t really impact you. But they do. They shape the way you see someone and their experience.

[00:12:05] Rachel: And thinking about it in the explanatory models, being open, it also leaves for solutions to be open or for greater opportunity for healing or for responses.

[00:12:22] Mary: Yes, that’s true. And if we call something an illness and we put doctors in charge of it, we’re going to get a very narrow. And the doctors command most of the resources. We’re going to get a very narrow range of responses that may be somewhat helpful to some people. They won’t be everything they need. They may not make any difference to some people, and they’ll be quite harmful to others. So I think it’s very unfortunate that we have a legal service system where at the hub of that system sits the kind of psychiatry, and I’ve never been antipsychiatry at all, but we need psychiatry as one of the spokes of the system and not at the hub.

And I think when I look at systems around the world and efforts at reform, the one thing reform efforts fail to do is take psychiatry away from the hub and make them a spoke in the system.

[00:13:38] Rachel: That real decentering, that decentering of psychiatry.

[00:13:42] Mary: Is really centering of psychiatry. Yeah. Because I think psychiatry can be very useful for people.

I’m not at all an abolitionist about it, but equally useful can be stable housing, help to find meaning in your distress, cultural and spiritual support, getting a job, and being socially connected.

These are all equally important. And yet we spend probably in Victoria still maybe about 95% of the budget on pills and pillows.

[00:14:25] Rachel: Yeah, pills and pillows. It’s a great statement. It really sort of talks. What comes up for me is just the reductionist nature of what we’re investing. Yeah.

[00:14:38] Lucy: I was wondering, Mary, from your experiences of being in extreme states, whether that’s you in your own extreme state or supporting other people, what do you think is the most helpful thing that people can do for someone?

[00:14:51] Mary: Well, for me, when I was in my extreme states, the thing that helped most was kindness and acceptance. People who got agitated and fearful were not helpful, or who. People who got controlling were not helpful, but people who were just kind, who accepted me and didn’t really expect too much from me.

[00:15:16] Lucy: Yeah, I think that’s such a key, just letting someone be as they are, so simple. Why do we keep overlooking these?

[00:15:24] Mary: Yeah, I think a lot of the most effective approaches in mental health are some of the simplest ones, and I think there’s a huge place for just calm kindness that trumps a lot of the other clever tricks and interventions that people throw at people in the system.

[00:15:50] Lucy: So what went wrong? Why have we sort of lost that ability?

[00:15:58] Mary: I think that’s a complex question, and I think you have to zoom way out from psychiatry itself into our culture.

And I think there’s a cultural fear of madness. And madness is pretty scary, not just often for the people who are experiencing it, but for the people who look on. We have a.

And this is very historical, but we have a set of quite magical community expectations on psychiatry to predict risk, which they can’t do very well at all, but we still expect them to, and to respond to it in coercive ways.

Now, we’ve got several coercive sort of systems in our society, and they’re all kind of slightly, slightly interlinked, and they’re really responding to community fears, whether they’re realistically based or not, on people who behave differently or who are a threat. And of course, they cause people, particularly psychiatrists, to become very risk averse. And so what do they do?

They use the tools they’ve got available to them. That’s the Mental health Act. Medication and locked wards, and that’s what they use in order to manage the risk. Now, the risk is not even necessarily to the person themselves, but it’s to their professional reputation and to the organization. So we’ve got a pretty unhealthy dynamic operating there, and I think we’re not going to get very far until we sort of break that particular dynamic.

[00:18:11] Rachel: I am interested to hear a little bit about the memoir.

[00:18:17] Mary: Yeah so I wrote a memoir that was. It took me ten years to write, and it was called Madness made me, and it was published in 2014. So it’s a wee way.

[00:18:31] Rachel: Congratulations, by the way. Congratulations.

[00:18:35] Mary: Yeah, it was quite a job thing to do. Some ways I do like writing, and it was probably one of the most satisfying achievements of my career, finishing that memoir. The whole idea of the memoir was to show that madness is a full human experience, that meaning and value can be derived from. One of the things I wrote was about the relationship between what I called madness and sanity. I wrote this. The conventional wisdom says madness and sanity can never meet over the great wall that separates them. But I have experienced both, and they bleed into each other like water into wine. My madness and my sanity are not two parallel stories. They are one story in two dimensions.

Madness and sanity are not two different garments. They are the warp and the weft of the same fabric.

Sanity is the container madness sits in. They are made for each other, like a cup is made to hold drink.

Sanity stops madness from spilling everywhere. Madness stops sanity from confining us to the tyranny of the ordinary.

So I had a lot of reflections in it about the nature of the experiences I was having, and not just a description of the actual experiences. Yeah.

[00:20:10] Lucy: So powerful, what you’ve written.

I’ve never heard anyone write like that on that topic.

[00:20:17] Mary: One of the things I really wanted to convey is that these experiences have meaning, and you can learn an awful lot from them. I found it really difficult to use the usual tools of analysis to understand those psychotic experiences. And I sort of grappled with this quite a lot when I was trying to piece it all together. And what I found is that nobody really wanted to help me. So the professionals, they just wanted to know what my symptoms were, and they didn’t really sort of take any interest in the meaning I might derive from it. And I’ve got a piece here that describes the dilemma I was in when I was going through those experiences.

So I start off by saying that there are many stories about madness.

For mad people, the stories are of a powerful experience. For psychiatrists, it is a collection of symptoms, and for families, it’s disturbing behavior. For the public, the story of madness is enshrined in the dictionary. In everyday language. Madness is insanity, foolishness. It’s wild and uncontrollable.

Madness has been described again and again by people who’ve never experienced it. The mad person’s definition of madness has never made it into the dick, into the dictionary, or into conversation. Media stories, literature or mental health discourse, our version of madness can even elude us. We lack a validating language to make meaning from it. Our madness stands outside in the dark, knocking on the door of meaning, struggling to get in. My own stories of my madness struggled to take shape, while other people’s stories of it took instant inspiration from the dictionary diagnostic manuals and a wider culture that completely shunned it.

Most of the stories of those who look on, seeing only snatches of madness portray it as all bad. My story of my madness, though, is fuller than those who looked on. As well as being the most intricate story, it is the only unbroken one, the only story that had a witness present from start to finish and every moment in between.

That witness was me.

That’s kind of a reflection on how there are so many people, so many sort of ideas about what we’re going through. And yet, as a group of people, we were never supported to really create our own meaning about these experiences.

[00:23:32] Rachel: Were you able in those years to find a meaning making process?

[00:23:38] Mary: Yeah.

What I decided, one of the things that was different for me than for a lot of other people, is I was never clear about why I ended up with these existential crises and these mood swings and psychosis. It was never that clear to me. And a lot of people say, well, some really bad things happened to me and that’s why I ended up there in a way that if you’ve got a clear explanation, you can weave it into the story of your life a bit easier. And I had a real struggle with that.

And I’ve got another piece where I describe the way I started to be able to integrate it into my life. And it talks about the importance of my peers. At the same time, I start off by saying my madness was one of the most profound experiences I ever had. It was as intense as falling in love, a religious revelation or overwhelming grief. I didn’t want to romanticize madness, but I knew it deserved the same status and respect as any other powerful human experience. What did it mean when the world was too beautiful for me to look at? What did it mean to be inside the black box? What did it mean that I lived in such extreme zones of existence? Nobody really knew or cared, except me? Mostly it meant terrible suffering and my desperate struggle to find a valued place in the world. At first, it meant wandering around the crumbling edges of human experiences like a lost explorer.

But over the years, I met many fine people who were mad, like me. I learnt that our madness had taken us to a foreign land where only mad people could go to. Some of us stayed in this land for a long time, while others got out and kept returning to it. Mental health professionals stood at the border trying to pull people out of the mad land. Even the ones that wanted to stay. They knew the Madland was as a mad, as a bad place where people got lost, sometimes forever, but most of them had never been there .My peers helped to show me that I was not the lone lost explorer I thought I was. The Madland, for all its perils, had some of the most enchanting scenery in the world. Like a land that has mountains and ravines, rivers and caves, blinding sun and swirling storms, the Madland could be a place of beauty as well as danger. My peers helped me understand that there was a whole tribe of us who’d been there and seen many of the same things, things that other people didn’t understand.

Many people reached the border of the Madland at some time in their lives. Most manage to skirt their way around the edge of it and look on with dread at a distance. But those of us who go right into its belly come out with richer pictures of a being that has been lost and found again.

The tragedy is, no one wants these pictures like the paintings of some abstract artists. People look at these pictures and think they could have been done by a child of three.

My own pictures of madness came in the word form of words and metaphors at their most powerful. My words floated in from the blackness and passed through me onto paper.

I made meaning not in spite of my madness, but because of it. It was not the kind of meaning that answered ambitious intellectual questions, such as why, like haunting musical poetry, it was a meaning saturated with soul, an intuitive expression of meaning, of being without the labor of logic. So that’s how I kind of, in the end, came to understand it. Not from an intellectual perspective, but more from, I guess, an aesthetic or poetic or something perspective or emotional perspective.

[00:28:15] Lucy: It’s the most incredible visuals I’ve ever heard been told about madness. It’s such a gift for people who haven’t been through it, to understand it. So many people can’t articulate that experience, and to hear it spoken about in a way that you’re just amazing storyteller. It’s such a gift.

[00:28:36] Mary: For me. It’s a bit like sculpting stone.

A lot of that writings had five drafts.

You don’t just sort of spin it out in one go.

[00:28:54] Rachel: Such a gift to the world.

[00:28:57] Lucy: Yeah, I can’t wait to read it.

[00:29:00]Mary: If you want to find it, it’s called madness made me, and it’s available as an ebook or a paperback on Amazon.

[00:29:09] Lucy: Awesome. We’ll put that in the show notes.

You seem to have had a lot of good things come out of your experiences.

[00:29:19] Mary: Yeah, I think that’s true. One of the things that makes me so sad is seeing people who, for whatever reason, and there’s a whole bunch of reasons why this might happen, and some of them can be laid at the feet of the system, but who stay stuck in that place, who remain socially isolated, without a contributing role in poverty, and with a very diminished sense of self and self agency. That really fills me with great sadness that there are quite a few people in our system actually encourages some of this. One of the reasons I was able to get beyond that point was probably my original privilege. And I can’t emphasize enough how being white and middle class was pretty helpful to me, and being brought up to be a questioning person was very, very helpful to me in navigating my way through and out of that system. I’ve had some pretty amazing opportunities and experiences in my career that I wouldn’t have perhaps had otherwise if this hadn’t happened to me.

And I would just like everyone else who goes through those experiences to be able to get to a point in their lives where they can see the benefit of it and move to another place where they’re not sort of. Where it’s not sort of dominating their lives.

[00:31:09] Lucy: Yeah. I think that’s the power of lived experience stories. And it’s so important to hear stories like yours because I’ve spoken to a lot of people who’ve had very extreme things happen to them, but when you speak to them, they say, I don’t regret any of it, and I wouldn’t take it back.

[00:31:25] Mary: No.

[00:31:26] Lucy: We’re so caught up in not letting it happen at all that we’re just not even letting people go through it.

[00:31:33] Rachel: And make meaning of it or defining it in such a limited way.

[00:31:37] Mary: Yeah.

[00:31:39] Lucy: If you don’t actually hear people who have been through these stories, you make your own assumptions about what that’s like and you miss all the magical parts.

[00:31:48] Mary And there were some incredible. I had some incredible experiences, some terribly scary, awful experiences, but I had some amazing experiences. And in some ways I live in the sort of normal zone. I haven’t had a mood swing for years, and sometimes I miss it a bit.

Sometimes I think, oh, they were such powerful experiences.

[00:32:15] Lucy: Yeah.

[00:32:16] Rachel: What advice would you give to the outsider of the foreign land standing on the edge, trying to pull people back?

[00:32:28] Mary: I would probably say, get inside people’s souls instead of just looking at their symptoms.

[00:32:38] Rachel: Okay, how do you do that?

[00:32:40] Mary: Well, you listen to people.

One of the things people can do, instead of reading those awful papers they read, they could read more accounts of people’s accounts of their experiences.

One approach that we’re exploring at the moment in the department of Health is some sort of deep dialogue where people with different perspectives come together and talk about these things. And one kind of area of dialogue could be the different experiences of the same phenomenon. Like someone has a psychosis, there’s the person’s own experience, there’s the people who love them, who look on and think fuck.

And then there’s the professionals who, for slightly different reasons, think fuck.

[00:33:35] Rachel: Yeah.

[00:33:38] Mary: And how you can mediate those different realities to come to a point where the experience itself is just honored a bit more. One of the things about it is when you’re in those states, there’s only room for one.

It’s very hard to share.

So it’s very isolating and very hard to describe too, my descriptions, and I’m not actually describing being inside the experience, I’ve just been reading reflections on it. I worked quite hard at describing those experiences, and I can understand why people find that really, really difficult. And the open dialogue approach should open the way for these kinds of discussions where people can feel safe and appreciated enough to talk about what it’s like for them, while everyone.

[00:34:47] Rachel: Yeah. Where people’s experiences can met with curiosity and respect and time. I think just being with.

[00:34:59] Mary: Yeah. I think one of the problems with the mental health system, and more so than when I was using it, is just how overrun it is and how it seems to me that the job of the day is to keep as many people out as possible because people are. There’s so much demand.

But I think there’s a cultural issue behind that. I think if we invested more in communities, much more down the prevention and promotion end, and we equipped communities to look out for each other and look after each other, I think we could do something about the demand. Because I think people, as soon as they feel, oh, I’m not coping, they just go off to a GP. What does a GP do? Give them a pill or try and refer them to a psychiatrist. And if they’re feeling really shit, they go to Ed.

And that’s a very dehumanizing experience for a lot of people.

I don’t think it’s just.

We should just understand it as, oh, a whole lot of people are getting mental illness and they have to go and see a professional. I think we need to think why is our culture structured in such a way that we can’t take care of each other, we can’t sometimes take care of ourselves. And as soon as things get a bit rough we resort to the medical professionals.

[00:36:46] Rachel: Yeah, it’s so true. When we think about the role of social determinant and the community would meet those needs in many ways and when there was problems or difficulties, the community would respond. But now it’s service provision.

[00:37:03] Mary: Yeah. And I think what’s happened now, I don’t want to glorify the role of communities historically either, because,

Rachel: No, there was other bad things.

Mary: They’ve been a bit cruel at times. But what’s happened in the last couple of hundred years is that the service system has actually taken over the role that was taken over by aunties and grannies and neighbors and communities and actually disabled those skills that people had.

And I think that’s really unfortunate.

[00:37:44] Rachel: Which has also contributed, I think, to the pathologization because this is no longer a human experience. There’s something going wrong and then it requires an expert.

[00:37:57]Mary: It requires an expert

Lucy: of someone who doesn’t know you.

Mary: Yeah. And someone who doesn’t know you is paid to be there. Yeah.

[00:38:07] Lucy: So we’ve spoken a little bit about what the mental health world doesn’t do so well, but we’re wondering if you could think of a time where you’ve seen someone handle distress.

[00:38:18] Mary: Oh yes. Well, yes, look. Yes, and I think it’s really good to focus because I get into critique a lot.

[00:38:27] Lucy: We all can. Yeah.

[00:38:28] Mary: And I think it’s good to focus on some of the things that work. Well, I remember when I was in the hospital I used to go into almost sort of catatonic depression, I guess you’d call it, where I’d just be mute and be in bed all day doing.

And I remember this nurse used to come every afternoon and sort of unfold me out of the bed and stand me up very gently.

She wouldn’t say a word to me and she’d just take me for a little very slow walk around the grounds and put me back into bed. And it’s such a simple thing, but I just remember her acceptance and her not trying to make me do anything, not trying to curry me up because I was incredibly slowed down.

But just the kindness of that. I think it’s quite hard to be with people who are in extreme states. I’ve had my experience with friends and my partner and it’s pretty challenging. So I think we need to acknowledge that for people who are sort of looking on. But yeah, I think there are a lot of very humane approaches that have been built up.

The problem is they’re on the outer edges of the system and they don’t get sort of built into the fabric of the system. They’re just little outliers. And one of the things that worries me about the growth of peer support and I’ve been going around visiting mainstream clinical mental health services and it’s very, very hard to maintain your identity and integrity in such a clinically dominated system.

And so there have been times when I’ve thought, oh, the peer support workers are kind of starting to think a bit like clinicians, and I think we really need to give people the education, the supervision and the support themselves, but also for the services to understand that their dominance is actually killing off a very precious kind of emerging approach that could be very helpful to the way they do things.

And I don’t think people mean to do that.

I often reflect on my life as a white person in New Zealand, and you just go around, you’re the dominant culture, you just go around doing things the way you’re used to and you don’t always realize that what you’re doing is suppressing the other cultures around you. And I think that’s what’s think. I think there’s a lot of work to be done in the lived experience, workforce development, on that organizational readiness, but also on supporting that workforce to hold true to their identity and values.

[00:42:15] Rachel: Thank you so much, Mary.

[00:42:17] Lucy: Yeah, this has been a very powerful conversation. I’ve been so drawn into your words and, yeah, you’ve given such a unique but very important perspective. So thank you.

[00:42:27] Mary: Oh, it’s a pleasure.

[00:42:33] Rachel: A difficult gift.

[00:42:35] Lucy: A difficult gift. What a name.

[00:42:37] Rachel: It is a really appropriate name, isn’t it?

[00:42:39] Lucy: Yeah, it’s a beautiful reframe.

[00:42:41] Rachel: Yeah. You know, the kind of things that can happen or what’s possible through suffering.

 [00:42:49] Lucy: That came out a lot, didn’t it?

She was speaking about how she actually missed those experiences as well. That’s not something that people generally talk about. I feel like a lot of people might be shocked if you heard someone say that they miss being in that realm. How amazing were Mary’s descriptions of madness.

[00:43:09] Rachel: There were so many metaphors in there, wasn’t there? And images.

that listening to her speak, I could have these pictures in my mind that were so powerful, so vivid. Yeah. Where I landed at the end of it all was just this really sitting with this confirmation, I guess, of the belief in love and healing, love and compassion and kindness and the healing power of that.

[00:43:39] Lucy: Yeah.

It keeps coming up, doesn’t it?

[00:43:42] Rachel: It really does. I feel like we’re so lucky to have Mary working in our mental health system and doing the job she’s doing now, but also all the things that she’s done.

It’s a life really committed to the benefit of others, and I find her incredibly inspiring.

[00:44:07] Lucy: Absolutely.

[00:44:07] Rachel: It’s a real honor to have been able to talk with her today.

[00:44:24] Lucy: Thank you for listening to our podcast. If you wanted to stay in touch or learn more about discovery college, please head to our website, discovery.college.

The definition of spirituality mentioned references the work of Canda, Edward (2008) Spiritual connections in social work: boundary Violations and transcendence. Journal of Religion and spirituality in social work 27. 25-40.

This episode also mentions “My Beautiful Psychosis: Making Sense of Madness” by Emma Goude. Check it out here: https://emmagoude.com/books-2/#.ZdvvPnZByUk

Come and listen with:

Lucy (She/Her) – A big fan of pickleball, ice cream and storytelling

Rachel (She/Her) – Social Worker, Dialogical Practitioner, mad footy fan and wildly passionate about transforming the culture of mental health services to be person-led and human rights informed.

Incredible artwork @sharleencu_art

EPISODE TRANSCRIPT – A search for meaning

[00:00:01] Lucy: This podcast has conversations around different mental health experiences that may be distressing for some people. If that doesn’t feel like something you want to explore today, you might want to visit another podcast and come back to us another time.

[00:00:14] Rachel: discovery college acknowledges the traditional owners of country throughout Australia and recognises their continuing connection to lands, waters and community. We pay our respects to Aboriginal and Torres Strait Islander cultures and to the elders, past and present. They have never ceded sovereignty.

[00:00:32] Lucy: In this podcast, we share stories that help us learn from each other, connect us and inspire growth. We want to acknowledge that this way of being, of coming together to share knowledge and stories, is a tradition that has already existed on this land for hundreds of thousands of years as a part of the culture of First Nations people.

[00:00:51] Rachel: discovery college acknowledges the views shared in this podcast are about mental health experiences, but are not a substitute for professional mental health advice and support. The views in this podcast are not the views of Alfred Health, but are the views of the individuals we’ve had conversations with.

[00:01:07] Lucy: The stories we share on this podcast aren’t just stories, but memories of the people who have bravely shared their experiences with us. Remember to take care of yourself as you listen, as well as to take care of the stories that you hear.

[00:01:33] Rachel: Extremely Human is a conversation about the profound experience of extreme states. When we speak about extreme states, we want to explore a more humanistic way to understand people’s experiences that aren’t always shared by others.

[00:01:47] Lucy: Each extreme state holds different meaning for each person, including those related to psychosis, depression, grief and addiction. As we chat with a variety of humans, we explore the important question how can we respond to distress with greater compassion and humanity?

[00:02:05] Rachel: In this episode, we talk with Elsa. Elsa talks us through her new role as the spiritual care lead and some of her hopes for the role. Elsa breaks down and simplifies what the word spirituality means, what it can look like in a modern world, and why it can be important in the context of mental health and healing.

[00:02:35] Lucy: Thanks for joining us today, Elsa. Are you able to tell us a little bit about yourself for those who don’t know who you are?

[00:02:42] Elsa: Yeah, sure, I suppose in a work context. I work for the Alfred. I’ve been working on the inpatient unit at the Alfred Hospital for Mental Health and I just recently finished my role there as a allied health principal and I’m starting a new role in July as the mental health and spiritual well being worker. I’m also a mum of three teenagers, married and live locally, so that’s a bit about my personal life. I also do some voluntary work with young people.

So, yeah, that’s a little bit about me.

[00:03:29] Rachel: We’ve been asking everybody who, at the start of each episode, the same question. I wonder, Elsa, if you can think of a time you or someone you know have had a disproportionate reaction to.

[00:03:41]Elsa: Yeah, well, yeah. The one I thought about was probably because I’ve been visiting family and I’d gone to Dublin, and because I knew I was going to see my family, I was going to surprise my mum and dad. I wanted to do something special. So I was like, I need to get something that’s Irish. And so I bought a couple of presents for my parents. I got my dad, like, a peaked hat, sort of made in Ireland, like, it’s authentic. And I tried to get something for my Mum that was equivalent, and I got her this scarf that was also made in Ireland.

And it all seemed quite sort of legit and authentic, and I was just really excited about it. And I get quite excited about seeing people happy or probably over.

I don’t know, I just do a bit of, like, a bit of a dance and a bit of a. And I remember giving it to my parents, and my Mum’s reaction to the scarf was like, oh, isn’t it great? And I was just, like, making it, like, trying to sort of make it better than it was, I suppose. But for me, it was just so meaningful and stuff like that. And I was just like a child.

I sometimes look at myself and reflect, and I go, why are you so excited over something so simple? And the reaction from someone is, like, a bit disappointing. And I think it’s their reactions that kind of stop me or people’s reactions to my sort of.

[00:05:20] Lucy: We are here to talk about extreme states. That’s the overarching theme of the podcast. We just wanted to ask you what that meant for you in your life or in your role, because it’s a bit of a broad term and people interpret it in different ways. But when you think of extreme states, what comes to mind for you?

[00:05:39] Elsa: If I had to define it, I’d say it can be unpredictable and it can surprise you.

It’s often, in my opinion, a response to something that is an event, or whether it’s a sad event or exciting event that maybe lacks control sometimes. And I think sometimes extreme states can surprise us, and sometimes it can be a learning experience as well. When you go through that, is there a real definition about it? Sorry, I’m just interested.

[00:06:16] Rachel: I think it’s often used as an alternative to medicalised language around things like psychosis or other extreme states that are sometimes referred to as symptoms or explained through disorders.

[00:06:34] Elsa: Yeah, I suppose things that aren’t perceived as normal is an extreme state, I suppose. But I’d also question what is normal?

[00:06:45] Rachel: I don’t know if it’s perceived as. I think maybe what we’re trying, the use of a term like extreme states is trying to say they are normal. Their responses to experiences or things that happen for humans. So they’re kind of extreme psychological distress, perhaps. So we’re trying to actually mean they’re quite human responses to different life events or different experiences or different experiences of ourself.

[00:07:21] Elsa: Yeah, I think especially when working with others or talking to others. And when I think about sort of the conversations I’ve had, I don’t know about you, but sometimes you think, oh, why is that person feeling so upset about that? Or like expressing that way and themselves in that way? And I think we do need to remember that there’s so much that might be different and that we are different, we are individuals, we will respond differently.

And that example I gave about me being excited and my family not being as excited or whatever, I think the problem is sometimes we make apology for feeling those ways. But maybe it’s actually okay just for them to feel the way they did in terms of their response. And it’s also okay for me to have felt excited about something that maybe they didn’t feel as excited about. Because for me it was meaningful in a different way. Like, I spent a bit of time thinking about it and I went to quite a few shops and it took me a few days to decide on what I was going to do. I didn’t give them that context, but that’s why I was excited. Maybe that’s why I was like, this is meaningful. But they didn’t get that context. They just got me giving them a gift.

And I think sometimes we sort of judge that response that what we experiencing but what we haven’t understood is the meaning behind it or what’s gone on for that person. And I think that is actually sort of quite relevant. And we don’t always spend that time asking or understanding.

And I think if we did, then maybe we’d be just as excited or just as upset or whatever. I think there is something about that sort of understanding or just being with that person and connecting with that person. That’s what’s so important.

[00:09:28] Lucy: We’re all just off in our little individual realities, our little bubbles.

[00:09:33] Rachel: Individual realities.

[00:09:33] Lucy: Sometimes they join in.

[00:09:35] Rachel: Gosh, I like that.

[00:09:37] Lucy: Yeah, but I’m also really interested to hear about your new role. I remember opening up the email saying that you’d gotten the role, and I think it was the first time I’d ever seen a role like that come up, ever, in mental health.

[00:09:52] Elsa: Yeah.

[00:09:53] Lucy: I was wondering if you could tell us a bit about it, how it came about.

[00:09:58] Elsa: I suppose I’m just as excited as you, and I almost am in disbelief that it’s actually happening. It’s a role that requires you to be a mental health clinician or someone with sort of that professional background that is able to not only understand mental health concerns or whatever, but be able to sort of engage with someone exploring their spirituality. So the emphasis is more sort of being a clinician exploring spirituality. And I suppose it’s important to start off with what is spirituality? And I can actually sort of just give you a definition. Spirituality refers to the human search for meaning, purpose and morally fulfilling relationship with oneself, other people, the universe, and of being, however that’s understood. So I suppose when we talk about spirituality, we’re talking about meaning and purpose, and the key is relationship. And I think that’s the key around sort of seeking meaning and purpose. It is through relationship, as it says, with oneself and others. And that’s what brings meaning and purpose. And how can we ignore that when it comes to mental health? And what I have found, as I’ve sort of worked for different services in the UK and here, is that it’s not always considered or talked about. 

And also for the person that is sort of receiving mental health service, they often have said to me and others that they are afraid of talking about that because of fear of judgment and stigma, because of their belief. And also how that sort of sometimes conflicts, comes into conflict with things like hearing voices or psychosis, if you like.

And I remember this one time working with somebody, and again, this was in my, she was a young person with a very strong christian belief, christian community, christian family, and she experienced and was diagnosed with schizophrenia, and she was experiencing a lot of psychosis. And she felt that in that experience of psychosis, that she was being quite sort of judged and people from her community did not understand or know how to deal with it. And some of it was actually quite dangerous in terms of what they were saying to her around that. And then in the care that she was getting from mental health, that sort of stigma around sort of like just her religious beliefs and sort of how that, like when she was saying that she prayed and heard from God, it was almost minimised or sort of seen as something that was psychotic. So she was having a lot of conflict around, sort of like what is truth and what isn’t. And I remember having those discussions with her and it was such a good start to my career, in some ways, around really exploring that and trying to understand that more. I’m not saying that I get it, but I am saying we need to feel comfortable about helping people explore their spirituality, but also decipher what’s real and what isn’t and maybe just feel comfortable to have those conversations with us as clinicians. So I suppose when I look at this role, I think it’s a good role to have, and I think it’s important to understand different cultural beliefs, different religious beliefs, but also help people understand and decipher what’s true and what isn’t, because I think there is a lot of confusion. And when we avoid things, it means that we’re not helping or enabling people to explore that aspect of their lives that bring meaning and purpose. And so that’s where I think this role will be really significant. But I also think it’s a role. Whilst it’s new in Australia, it’s been explored in other countries like Canada, America and UK, where they actually see it as part of their mental health care. I’m quite excited about having this opportunity.

[00:14:50] Rachel: So how do you think it will work? What are your hopes for how the role will integrate across the mental health system?

[00:15:01] Elsa: I wonder, like I said at the beginning, I feel like a lot of clinicians have felt probably not empowered or enabled to sort of really speak freely or explore freely with those within the mental health system. But even, like, when I talk to staff, a lot of staff withhold their beliefs and thoughts. I don’t know if you found that as well, and that’s actually quite sad.

I do wonder whether it’s about what’s happened over the years around sort of like terrorism and extreme belief systems of certain sort of religions. And I think you come across every kind of belief that someone might have. There’ll always be a spectrum, there’ll always be those extremists that sort of like, believe things that aren’t necessarily really true. And because of media, they just see the extreme. And I think there is something there that’s really influenced people’s thoughts and beliefs and their ability to explore with others. And I do wonder, is it fear?

And I think whilst we don’t talk about it, and whilst we don’t allow those spaces to talk about things, then what it becomes is it becomes alienated, it becomes something that isn’t explored. And how do we learn? We learn by questioning, being curious, exploring and conversation. And it’s ironic. We just said spirituality refers to like, it’s linked with relationship. Relationship is giving and receiving, isn’t it? It’s not just a one way thing. So in the same way, when it comes to spirituality and stuff, I think we do need to talk more about it. There’s three components to the role, I think a part where I think I need to probably get staff on board to talk a bit more and to explore a bit more and educate and also learn together.

But also I also think about group work, how that’s a good space and maybe sort of looking at well being and including spirituality. So not just looking at the social, emotional, mental well being, but looking at spirituality. So bringing that as part of our package of care for consumers. So when we’re working with them, when we’re doing a wellness plan or whatever, that we’re looking at that aspect, we explore and we’re asking.

And then there’s the third aspect, the one to one work, helping people explore their spirituality and meaning and purpose through that one to one work. And especially those that are sort of having conflict, like I described earlier on with that young person. And I have had a couple of clinicians ring me up and say, look, I’m working with someone and they exploring their Spirituality, but I don’t know how to talk to them or how to refer them on. And I think there is an aspect of sort of like, how do we as a service, ensure that what we support people with is safe.

[00:18:36] Lucy: I love how you’ve sort of demystified spirituality by your definition as well. Because I think a lot of people steer away from the word spirituality because it sounds very airy, fairy, and not grounded in reality. But I would say the opposite is probably true. When you.

[00:18:53] Elsa: True.

[00:18:54] Lucy: Would you ever read that definition again?

[00:18:56] Elsa: Yeah, sure. Spirituality refers to the human search for meaning, purpose, and morally fulfilling relationship with oneself, other people, the universe, and of being. However, that’s understood.

And it can also support, in times of suffering and loss that is experienced. And I think that is true because often when we work with people that are in crisis or people that are facing death in any way or extreme situations, often they’re not looking to sort of what do they do? They look for relationship, they look for meaning. They look for purpose. Suddenly all those things, those materialistic things or those things that like work or whatever, doesn’t mean anything anymore, but what they’re looking for is something else. And I certainly can speak from my own experience when I suffered loss, but also those that I’ve worked with, whether they’re friends or in a work capacity. It’s interesting. That’s something that often happens, I would say.

[00:20:12] Lucy: Yeah, I feel like people probably in their everyday life, if you read out that definition, I don’t think there’s too many people who wouldn’t relate to that in some way. I think we’re all looking for meaning and purpose.

[00:20:25] Rachel: Absolutely.

[00:20:25] Lucy: And working on ourselves and relationship with ourselves and others. It’s just how we frame that. And I think when you go into those heightened extreme states, it really amplifies what’s important sometimes.

[00:20:39] Elsa: Absolutely. I agree with you.

[00:20:40] Lucy: Do you think that there is an overlap between spirituality and psychosis?

[00:20:46] Elsa: Look, what I’m going to say is not founded in sort of, like, evidence, necessarily, but I actually do think there is. I find it interesting that when you sort of unpack things when someone’s going through psychosis and stuff, often there’s a lot of reference to sometimes religious beliefs and spirituality. Really?

And I find it fascinating that as clinicians and I speak for myself sometimes, that we immediately kind of think, oh, not reality based, blah, blah, blah.

But then when you sort of really unpack it with someone, there’s an element or a thread of truth there. Like, I’ve often listened and thought, gosh, it’s like you connected to something that’s beyond here.

And whilst they’re in that extreme state, I wonder whether they are a bit lost. But you do wonder whether there’s a thread of truth to some of what they experience. And I do think there is an overlap. And I do think it’s interesting that a lot of psychosis makes reference to spirituality, whether it’s evil spirits or not, whether it’s God or whatever. And I think there is an overlap, and I find it fascinating. I’m like, why is that? Yeah, but it’s just fascinating.

[00:22:21] Lucy: It is fascinating. I’ve worked with a lot of people with psychosis and had psychosis myself. The one thing we all had in common, believing you’re Jesus, or feeling like you’ve got supernatural powers. And when you come out of that, you go, oh, no, I’m not Jesus. But at the time it feels like that, but it never gets explored at all. It’s just immediate shutdown. And a lot of people feel, again in that book that we read, my beautiful psychosis, when she comes out of it, she feels like she’s had a big spiritual awakening. And they go, no, that was just psychosis. Just like reduced to a meaningless experience. Shame.

[00:23:00] Rachel: Yeah. I wonder why we’re so reluctant as a system, if you like, or a world, to really explore what the belief systems are representing about the real life of someone.

[00:23:15] Lucy: Yeah.

[00:23:16] Rachel: What these psychotic expressions or experiences. What metaphorical meaning might that be playing to the real life of a person and their experience? But why do you think we are so reluctant to explore and be curious about the meaning of these beliefs and experiences that someone might have in an extreme state?

[00:23:39] Elsa: Wonder if we’re afraid. Like, I. It’s like a lot of us are afraid of not being in control, I think.

And maybe I’m just speaking for myself and sometimes going through a journey of sort of something like that, like psychosis, spiritual journey or whatever, there is that sense of part of you feeling like maybe a lack of control.

And I wonder whether also I do blame media and things like that around, sort of like, what is portrayed around, like, as soon as someone, they’re very quick to sort of say, someone’s mentally unwell when something goes wrong and all that kind of stuff. So I do worry about that stigma and that concern, and I think I wonder whether that has impacted and influenced even clinicians and the work that they do and maybe also those that are experiencing it, that sort of sense of fear of being labeled or people making assumptions about them.

So I do wonder whether there’s a sense of fear.

[00:25:03] Rachel: But there’s this sort of reductionist kind of result of the human experience.

I do a lot of work with or talk to a lot of people who are experiencing anorexia, and I often think this is happening for a really important reason, and this has a really important meaning. And how do we explore that? There’s no explanation or opportunity to really make sense of what this very human experience means in someone’s life. And I think the same happens with psychosis. You’re hearing voices or you believe these things about yourself because you have psychosis.

That’s not an explanation, but it feels like a certainty in a way. It feels like we are really quick to label it as a symptom or something that’s happening because you have a disease or something wrong with your brain. Rather than being able to sit with some sense making and exploration of what this means for someone and their life and their experience of the world.

[00:26:15] Elsa: And I love what you just said about making sense. I think as humans, we do compartmentalise. We do try and make sense. We try and sort of say, this is what it is. And even when we label or diagnose, we kind of are trying to make sense and saying, this is what to expect and this is how to treat. But actually, sometimes the danger of that is just the individualism and treating that person as an individual. The reason why spirituality is so important is because it is about being and just almost being comfortable with the not knowing. And I think sometimes we struggle with that as humans because we try to sort of maybe control our emotions or just be okay in certain settings or sort of, like, meet with each other’s expectations. But sometimes that sense of sort of spirituality or just being there is a sense of sort of freedom, and it brings hope, and that’s what’s so exciting. And I think that’s the bit that probably we all struggle with, if we had to be honest.

[00:27:21] Lucy: And it looks like different things for different people. I know Rachel has compared spirituality or religion to the football because it feels like you’re part of something.

[00:27:33] Rachel: I mean, it’s a bit of tribalism, actually, but no, it does.This is a little bit embarrassing, actually. But it gives me a sense of having a shared belief system with people and a community in which I feel I belong to and I get to connect with others that I wouldn’t otherwise meet in the world and develop relationships. And this sort of shared thing that’s happening between our community.

And that’s something that I think is really kind of absent for many people in their lives in a very individualist culture where there’s different parts of our community that offer us that, but not all of us have access to it. And I think religion and faith communities are big at offering that to individuals and people.

And so is the football.

[00:28:33] Elsa: Yeah, but it’s because you feel like you belong to something bigger than yourself. And I think it’s wonderful. And I think that’s a little bit about, again, relationship, like with others, with yourself. The whole thing about spirituality, it is that sort of sense of belonging to something bigger than yourself, which is empowering, because when, you know, let’s face it, it’s lonely and hard to feel on your own facing life. And I think to feel like you belong to something or part of something is so important because it picks you up when you’re feeling down and all that kind of stuff.

[00:29:21] Rachel: Elsa, it’s been so wonderful speaking with you today. We have one thing more we’d like to ask. Can you tell us about a time or an experience that you’ve seen or witnessed or had, where you’ve seen someone be supported who’s experiencing an extreme state in a way that you think has been helpful?

[00:29:45] Elsa: Sure.

I can actually think of a lot of examples, I think, because of my work context, but I’m going to choose one that’s probably simple and close to home in terms of just working with a young person who was quite distressed and visibly quite panicked and restless and expressed that they just didn’t know what to do.

And the reason why I’m going to share this is because I think sometimes we forget that people in those extreme states just need a bit of guidance and a bit of reassurance. I don’t know about you, but sometimes you almost feel panicked. You’re like, how am I going to help this person? And I just remember thinking, just giving simple sort of comments around, like, okay, breathe, and it’s okay. And how quickly that person responded to those very sort of small phrases and prompts, and they were able to just sit in that space. And I remember taking them away from that environment as well and just sitting in a more calm environment. And it was just a reminder of sometimes that simplicity and those simple comments around, sort of like, noticing what’s going on and helping them. Just that reassurance of, like, it’s okay to feel the way you are and you will get through this and let’s just sit here.

And although you might be an experienced clinician or whatever, I think sometimes it’s just reminding ourselves that simple guidance can make such a difference.

[00:31:21] Lucy: That’s such a beautiful example of just giving someone permission to arrive as they are. I love it. I could speak about this all day. It’s been a lot of fun. Thank you so much for joining us.

[00:31:34] Elsa: I’ve really enjoyed it as well. Thank you. You both are great.

It’s great to talk to you. So easy to talk to you. So thank you.

[00:31:42] Rachel: Thanks, Elsa.

[00:31:49] Lucy: What an incredible human Elsa is.

[00:31:51] Rachel: Really right.

[00:31:54] Lucy: I am so excited that there is a spiritual role in our service because I feel like there’s not much room for conversations around spirituality in the context of mental health. I feel like when you say the word spirituality, people are like, oh, that’s like woo woo, hippie crap kind of thing. I just feel like sometimes spirituality gets a real bad bit of a bad rep.

[00:32:17] Rachel: and there’s a lot of movement these days towards really kind of making sense of experiences. And this work that Elsa is going to do has got a great potential to really help people with that, really an opportunity to make meaning and be really responsive to people’s kind of needs and preferences and belief systems.

[00:32:42] Lucy: Yeah. So important.

[00:32:44] Rachel: So important.

[00:32:45] Lucy: And I love the way she provided us a definition with spirituality, because it just broke it down. It’s so normalised. It’s like, yeah, well, who wouldn’t want that? It was just really nice to hear it summarised like that.

[00:32:58] Rachel: Yeah, well, she’s on a very important mission.

[00:33:01] Lucy: She is.

[00:33:02] Rachel: And I really wish her well, and I hope this new position really gets an opportunity to really cause some change.

[00:33:11] Lucy: Yeah. Thanks for coming on, Elsa. We love the work you’re doing.

[00:33:28] Lucy Thank you for listening to our podcast. If you wanted to stay in touch or learn more about Discovery college, please head to our website, discovery college.

Come and listen with:

Lucy (She/Her) – A big fan of ice cream and storytelling

Rachel (She/Her) – Social Worker, Dialogical Practitioner, mad footy fan and wildly passionate about transforming the culture of mental health services to be person-led and human rights informed.

Incredible artwork @sharleencu_art

EPISODE TRANSCRIPT – Is this really radical?

[00:00:01] Lucy: This podcast has conversations around different mental health experiences that may be distressing for some people. If that doesn’t feel like something you want to explore today, you might want to visit another podcast and come back to us another time.

[00:00:14] Rachel: discovery college acknowledges the traditional owners of country throughout Australia and recognises their continuing connection to lands, waters and community. We pay our respects to Aboriginal and Torres Strait Islander cultures and to the elders, past and present. They have never ceded sovereignty.

[00:00:32] Lucy: In this podcast, we share stories that help us learn from each other, connect us and inspire growth. We want to acknowledge that this way of being, of coming together to share knowledge and stories, is a tradition that has already existed on this land for hundreds of thousands of years as a part of the culture of First Nations people.

[00:00:51] Rachel: discovery college acknowledges the views shared in this podcast are about mental health experiences, but are not a substitute for professional mental health advice and support. The views in this podcast are not the views of Alfred Health, but are the views of the individuals we’ve had conversations with.

[00:01:07] Lucy: The stories we share on this podcast aren’t just stories, but memories of the people who have bravely shared their experiences with us. Remember to take care of yourself as you listen, as well as to take care of the stories that you hear.

[00:01:33] Rachel: Extremely Human is a conversation about the profound experience of extreme states. When we speak about extreme states, we want to explore a more humanistic way to understand people’s experiences that aren’t always shared by others.

[00:01:47] Lucy: Each extreme state holds different meaning for each person, including those related to psychosis, depression, grief and addiction. As we chat with a variety of humans, we explore the important question how can we respond to distress with greater compassion and humanity?

In this honest chat with Paul, he helps to bust some myths about common misconceptions in the medical world. Paul speaks about the value of humanizing people’s experiences rather than medicalizing it, and how including people’s loved ones in their care can make a real difference.

[00:02:33] Lucy: Here we are again, Paul. Thank you for joining us in our humble little studio.

[00:02:38] Rachel: Pretty excited to have you here, Paul, and to talk with us about.

[00:02:42] Paul: Don’t give me too much pressure.

[00:02:43] Rachel: Yeah, no pressure.

[00:02:46] Lucy: For those who don’t know you, Paul, can you just tell us a little bit about yourself?

[00:02:50] Paul: Sure. Well, I’m a child psychiatrist and I actually came up to 20 years working at the Alfred a few months ago, so I’ve been in my job as like clinical director of Alfred Kim’s for that time.

[00:03:04] Lucy: Wow. Long time.

[00:03:04] Paul: Long time.

[00:03:06] Lucy: A lot of knowledge.

[00:03:07] Paul: Well, you might say it’s too long.

[00:03:10] Rachel: This is totally putting you on the spot. But if you had to give one sort of short statement to say what you stand for as a psychiatrist, what would it be?

[00:03:18] Paul: Wow. I don’t know if I can do it in one statement, but like anyone, you’re hopefully going to try to make the system better. I mean, I’ve got quite a privileged position because I’m in charge of, I think we’ve got about 200 staff. So really, my job is hopefully help people get the best out of themselves. That’s my job. And it is something you can’t take lightly, because I do actually have power. And if you’re not going to use that for good, then it’s a shame.

[00:03:48] Rachel: That kind of reflects why we thought you might be a good speaker today, because the issues that we’re talking about is really about how do we make the system work better for people who are in extreme distress. Before we get to that, we have a bit of a standing opening question.

[00:04:02] Lucy: Yeah, Paul, I’m sure you have across your time, but have you or anyone you know had a disproportionate reaction to anything? Anything at all?

[00:04:12] Paul: Yeah, I think it’s hopefully, this is supposed to be a bit light hearted, because I don’t want it to sound trivializing what we are going to be talking about. But I did think about this question before I came, and I did burst into tears after Richmond won there, or actually before Richmond won the 2017 grand final. I think some people think it’s a game and why you’re getting so emotional about a game. But we actually hadn’t won a grand final for 37 years. And I don’t know, just the way it happened as well, underdogs and what it meant to a lot of people. So I’m trying to justify why it wasn’t disproportionate, but I think a lot of people would think that’s pretty extreme disproportionate to us when you’re game of football.

[00:04:52] Paul: We sort of interested, Paul, when we talk about the word or the phrase extreme state, what comes to mind to you? What do you think about?

[00:05:01] Paul: Honestly, I didn’t know that term until I attended the discovery course that you guys ran, because as a psychiatrist, you get trained in using more medicalized language, like psychosis, or in fact, we talked about schizophrenia. So what comes to mind when I hear that word is what I learned there, which is a more humanistic way of describing an experience for people when they’re out of touch with reality or their emotions are out of control or their feelings are out of control. And that’s actually a new concept for me. It’s probably trying to be a bit less prescriptive or a little bit certain about what’s behind it.

I think that language, using that language helps humanize the situation. Also having people not jump to conclusions about what might be behind it.

And also, I think it helps less medicalize it.

[00:05:57] Rachel: Can you say a little bit more about what you mean by medicalizing the extreme states and what’s the problem with that?

[00:06:06] Paul: Yes, I think there is a problem that in our Western culture, I believe that over a period of time, lots of emotional distress or mental distress has become too medicalized, and it leads to a real narrowing of being able to help people. And it’s also very. I think it’s part of our culture, too, which is very individualistic, and the responsibility for everything lies within the individual.

I think it causes heaps of problems because it particularly often leads to unhelpful solutions like that. An expert knows best that drugs are the way to help with these things, only that there’s some underlying medical problem, which is usually not the case. I mean, it’s sort of comforting in a way, and helps reduce guilt and shame and things. So there are some tempting things about it, but the negative is that it’s actually not really based on an actual factual basis. The best example I can think of is recently what I learned is that 90% of people in Australia believe that depression is caused by chemical imbalance. That’s a cultural view. So 90%. And in fact, it’s been shown that that is actually not the case. There is no evidence for a chemical imbalance. So that’s a big problem. And a lot of the drugs that have been manufactured or designed to help with that problem are based on that idea that there was a deficiency of serotonin or some sort of chemical imbalance, which means the whole thing, for me, becomes quite problematic. Not saying sometimes people aren’t helped by medication, obviously, sometimes they are. But the basis that it’s a medical illness is a problem for me.

[00:07:53] Lucy: Sounds so absurd when you say it like that, because it’s like, how are we treating people properly if we don’t even know what the issue is to begin with?

[00:08:03] Paul: Yeah, I agree with you, Lucy.

[00:08:05] Lucy: So it’s like, as a collective, I think we’re getting misled.

[00:08:09] Paul: It’s definitely getting more and more as well, because I’ve obviously been around a long time. What used to be the focus with schizophrenia is there was a massive search. I think millions and millions of dollars have been spent looking for a genetic cause, or it’s not quite the same as a chemical imbalance, but a belief that there’s some genetic thing and none has ever been found.

And because it’s such a… I think the word extreme states is helpful because who would be looking for a genetic basis of an extreme state?

That’s what I mean by the language that’s used. If you’re calling schizophrenia, it leads to a whole pathway of thinking there must be some genetic or biological basis or chemical imbalance. Whereas if you call something extreme state, I don’t think you’d be necessarily being so narrow to just look at DNA.

[00:09:02] Lucy: Yeah, because it just sounds like it’s a human experience rather than something that can be tracked.

[00:09:07] Paul: Doesn’t mean you can’t have an extreme state. Not based on something that might come out of the blue, it might be unlucky, or there might be some unknown reason why you’re experiencing that, and that’s okay. But the whole labeling of things like that, I think, is too narrowing, and it reduces the chance of effective help.

[00:09:30] Lucy: Is there anything else that you sort of see as an issue, the way we respond to people who are in those extreme states?

[00:09:37] Paul: Yeah, there’s lots. I mean, I just talking to a friend of mine, and her assumption was that people in extreme states are dangerous, and that’s a common myth as well, I think. I’m not saying there might be a small percentage of people who are, but most people in extreme states are only a person they’re in danger to of themselves.

But there is, I think, a community perception that people in extreme states are dangerous to others because maybe a tiny percentage are. So that also comes to mind when you say that.

[00:10:12] Rachel: What do you think those beliefs or those fears about people being dangerous leads to?

[00:10:19] Paul: Well, it definitely obviously leads to fear in the rest of the community. And that fear is obviously the basis for stigma and wanting to have those people put away or out of sight or managed in some way to keep society safe. And I think that does lead to more coercive treatment, more marginalization of that group of people who suffer those things in the community.

[00:10:48] Lucy: It almost sounds like just an insane response to lock up people who aren’t traveling so well and makes it feel like they’re punished. But I wonder if you could enlighten me or maybe some of the listeners, why that is a process to begin with. Why do people get taken to IPU settings?

[00:11:08] Paul: It’s generally based on fear and sometimes highly justified. So if you’re talking to someone and they’re threatening to kill themselves immediately. Obviously, you want to help them be safe, and so that’s a normal reaction. And so often having some time out or some peace, obviously, a lot of extreme states pass on their own if somebody’s being nurtured and looked after and cared for in a humane way. And so you don’t want to not have people have that opportunity, because often this is not normally a rational or thought out thing. It’s often someone’s overwhelmed. And so having a place of safety for a chance for that to settle is great, I guess.

Why are so many people being locked up? I think there’s other things at play that contribute to that, like clinicians feeling blamed if something goes wrong or if someone chooses to end their life or something. So there’s a lot of fear in clinicians that if someone harms themselves or does something, and I’m the last person to see them, they can be very defensive. And obviously, it’s very easy to lock someone up to protect the clinicians from feeling blamed. So that is a massive problem.

So I think that skews it. That’s why sometimes I think there are not other alternatives sought to help that person in that extreme state because of the fear based practicing that’s set up systemically for clinicians.

So I think there is a place for people to be in a place of safety against their will when they’re completely in extreme state and can’t be rational about what they’re doing or don’t have capacity to make thoughtful decisions in a crisis situation. But locking someone up long term for that problem is not usually helpful either. But in the short term, if it’s kind, compassionate and in a nice environment, it can be really helpful, I think.

[00:13:17] Lucy: I don’t know how much it works. Do you think it works? I mean, there’s probably elements that do.

[00:13:24] Paul: Yeah, I think. Well, in terms of, does it reduce people’s chance of suicide? I don’t think there’s any evidence that’s the case, in fact, but it’s very hard to prove that. And I certainly, obviously have put people in hospital against their will, which I thought was justified at the time because of us so scared about their risk of suicide normally, not normally hurting someone else, normally their own risk to themselves.

So I think it is justifiable.

But I think we do it too often, and I think that too often is because of the fear based practices that happen, because of the way, in particular way suicide is investigated it and in the fear that clinicians feel responsible.

[00:14:12] Rachel: For the outcome makes me think about just the result of that is clinicians and services are often in a position of us against them. So there’s this real kind of we’re working against people rather than with.

It made me think about earlier on, Paul, you said, you know, the medicalization leads to expert approaches, certainty around, or a false sense of certainty around the cause. If that’s not happening, what do we do instead?

[00:14:42] Paul: Yeah, well, I think that things are improving to some degree and I think the main issue is trying to involve as many people as possible in decisions like this. Obviously for us in a child and youth setting, it’s family. So we’re always trying to see if people can be supported in their own environment, at home with their family, but if you don’t involve them, that can’t happen.

And there’s often issues that are brought up about confidentiality and things like that. But I think, well, I personally believe we’re getting better at having those sort of crisis responses be a social network or family response. And even if that does involve in someone being put in hospital against their will, at least it’s done in a more transparent, open way, more.. There’s no secrets, it’s done with everybody’s mindfulness and it also, I think, should lead to being able people to leave hospital quicker and some sort of plan and open. I think that in the past what happened to people was a much more secret, much more things against their will without them really understanding why.

And also families felt very shut out of those decision making processes because the medicalization puts the problem in the person and the responsibility with the expert, whereas if it’s more shared decision making with people that love the person and the person, I think that even though it doesn’t sound that different, I think it makes a big difference.

[00:16:19] Lucy: When we spoke in the lead up to this conversation, you were talking about the new Mental Health act calling for less involuntary treatment. Would you be able to talk about that?

[00:16:31] Paul: Yeah, well, rightly, or wrong. I met with this guy, Terry Laidler, who’s going to be the chair of the collaborative Centre, which is supposed to be the heart and mind of the Royal Commission. And the two priorities. One of the priorities he’s has is reducing the number of community treatment orders and that’s what society wants and where really psychiatrists or mental health professionals need to be in keeping with society’s views. I think they’re laws for the society. It’s not just up to us. And I personally agree with anyway. Obviously I have supported some people being on a community treatment order. So it’d be very hypocritical of me to say never. But we do have a high number in Victoria. I’ve heard it’s the highest in the world.

[00:17:26] Lucy: Why? Why, Victoria?

[00:17:27] Paul: Firstly, I think sometimes I’ve personally been involved in situations where I feel it’s been helpful. So I’m not going to say it’s completely unhelpful. I think though, this fear based practice and this idea that experts and clinicians are responsible for someone’s life, and if something goes wrong, it’s their fault, that my opinion definitely leads to a high number of community treatment orders, because it’s taking risks and allowing people to make decisions about their own life when they may not be always in the best frame of mind, which is a difficult thing. But if you’ve also add the other layer, that you’re going to be criticized or blamed if they choose something that’s like suicide or self harm or something. I think there’s a higher tendency to have people on involuntary orders. That’s my opinion.

[00:18:22] Rachel: What are some of the things that happen that perpetuate fear based practices?

[00:18:28] Paul: I think there’s many, many things, but I think the first thing that’s happened in Victoria is the use of root cause analysis to investigate suicide, which even though it says it’s looking to find the fault in the system about why someone chose to end their life, the system is people. And so people that I’ve experienced when they have to front up, if in a very rare but tragic situation where someone’s taken their life, they have to go through some grueling investigation process where there’s incredible scrutiny on the notes that they write on exactly minute by minute, what happened in the few days before that person died, I think that seeps through the system in a really toxic way. That’s the first thing that needs to change, in my opinion. Because if you’re going to do those root cause analyses, you can’t deliver on a just culture, which is another whole topic, but the culture where clinicians are compassionate, kind and free to work in a meaningful way with people. If you’re going to always going to feel that the organization doesn’t have their back or someone’s going to blame them, and it’s just natural human thing is to practice defensively.

So I think that’s the biggest barrier. There are other barriers, though.

I think the tendency to be medicalized and not involving families as much or really focusing on individuals is a problem as well. But there’s a lot of things at play and it’s definitely changed in my career. So when I started, all of the psychiatric wards in Victoria were open, apart from a small high dependency unit in each ward. And certainly I started my career at Larundel, which was on a massive block land. And the vast majority of people that were there were free to go around totally freely. Isn’t. I don’t think there is any ward, including wards for teenagers and children that is not locked in Victoria now. I don’t believe there is. So that’s a massive shift.

[00:20:43] Lucy: Yeah. What happened in that time?

[00:20:47] Paul: Well, I think it’s not just suicide, although I think that’s the main reason. So if someone kills themselves, either on leave or from a ward, it triggers what’s called a sentinel event. And that’s when this root cause analysis kicks in. I think there’s other issues too. I mean, people would say it’s difficult to control things like drug use and other things. Visitors doing things that’s less secure and things. So it is a complex issue, but I think it would be better. Everyone, I think, has the desire that psychiatric wards could be opened more open.

But it does seem a difficult one to change.

[00:21:33] Lucy: Yeah. What are the things that you think that we can be doing better?

[00:21:36] Paul: Yeah. So I was quite involved with the Royal Commission process in Victoria, which I think was an incredibly. It was a great process. And there are many things in that which I think will, should and could make Victoria having the best mental health service in the world, actually. So one of the things that was a massive focus was the embedding of lived experience within clinics and within teams. And I think we’ve noticed a massive improvement in the quality of our care through doing that. But we’re nowhere near complete with that. Or we’ve just started on that, really. And that’s a massive focus of the Royal commission.

The Royal Commission paid, as my understanding, weighs 15 kilos. So it’s very difficult for me to summarize some of the positive changes in that. But there’s many, many positive changes. There’s many sort of structural things or resource things. But I think I would recommend people looking at the cultural shift that’s asked for in that, which is, again, a bit like what you’re talking about. To me, it’s trying to put in practice more humanistic, less medicalized, more recovery orientated practice within mental health services.

Honestly, I think that is pretty well spelt out in that royal commission and people. What is also well spelt out is things that were not right before.

One example I can give is some stories and it was in the first iteration of the hearings. It was in person. And I had the privilege, I suppose, of following somebody. And they talked a bit about the trauma that they experienced when they read their file, because there was a lot of things said about them that they didn’t know people thought about them, and a lot of stuff there that they were is highly traumatizing to read. So the whole idea of making files or available for people to read in time, or that notes are not secret biographies, but are transparent records of what’s happening with the person’s involvement and knowledge about what’s in their file. That’s, for example, I think can make a big difference because it changes that sort of us against them that Rachel talked about. And look, we’re in it together. We may not always agree, but at least we know what we’re not agreeing.

[00:23:59] Paul: Rather than when some of these people read their files, they had no idea that’s what people thought of them, and that was very traumatic.

[00:24:07] Lucy: I can imagine.

[00:24:08] Paul: And now I could go on about it, but there’s lots of things in the royal Commission report which talk to that idea of people feeling not heard and not respected and not treated well.

[00:24:21] Rachel: If you have a humanistic mental health system that is focused on non pathologizing or non medicalizing of people’s distress, what’s the role of medication or drugs?

[00:24:33] Paul: Yeah. So lots of people describe drugs being helpful to them. And so I think it’s the way you prescribe. So if you are prescribing as like providing an antidote to some medicalized chemical imbalance, I think that’s not the way to do it. But if you’ve got drugs that can help provide relief from very distressing symptoms, and the person who’s prescribing them has a very high level of knowledge about the effect of the drugs on people’s brains, like both positive and negative, and then you come to some informed. The person who’s taking the drugs comes to some informed decision about why the pros and cons of doing it and why they’re taking it and what the outcome might be. And there’s an open mindedness about the effect of that, either good or bad. And there’s an ongoing conversation around whether the drug is being helpful or unhelpful, I think it can be great.

But the idea that you come in, get labeled with something, and then get an expert tells you what’s wrong with your brain, and this is going to correct it. Firstly, that’s not based on science. And secondly, I think that can lead to more harm than good, because people can walk out feeling like they’ve got something wrong with them. They got a broken brain, or they got some chemical imbalance, which is actually simply incorrect.

It’s like just changing the way drugs are prescribed or I think that’s the key. Not that drugs are good or bad. They can be helpful or unhelpful, but if they are provided as if you got a broken brain, I think mostly they’re unhelpful.

[00:26:23] Rachel: Is that why you don’t use the word medication?

[00:26:26]Paul: Yeah, that is why. It’s deliberate.

They are drugs. There’s lots of drugs that we take. In Australia, we’re the highest users of cocaine per capita. We’re the highest users of methamphetamine per capita. We’re the second highest use of antidepressants per capita. We’re about to be, I think, the second highest or the highest user of prescribed amphetamines. So our culture is based on taking a lot of drugs.

[00:27:00] Rachel: I’m even noticing a reaction to the word antidepressant or antipsychotic. It’s sort of perpetuated by the way we even label medications or drugs, isn’t it?

[00:27:10] Paul: It is. I think when they tested the SSRIs, they’re called on people. What they found, I think, in supposedly normal people, whatever they are, is that they do have the capacity to numb feelings. Now, that could be good. If you’re really distressed, it might be nice to have your feelings numb, but it also might numb good feelings. So as long as you know that and you’re taking it with informed consent, not like that. You’ve got low serotonin. This is going to correct your broken brain. Then I think it’s okay.

But the naming is all for me. It’s marketing. So it’s a marketing strategy.

[00:27:54] Lucy: You make everything seem so clear.

[00:27:58] Paul: Well, let me assure you what is very surprising. Being someone like me. And as a group of us, we are seen as the radicals, which I feel like is really bizarre to me, that it’s a radical thought not to give children amphetamines. It doesn’t seem radical to me.

[00:28:15] Rachel: I’m wondering if you’ve got a bit of an example of a time where you think someone has been well supported in an extreme state.

[00:28:24] Paul: I just know that when we meet the whole family straight away after they’ve called in and the whole family comes, and we spend the whole session trying to help a young person with suicidal thinking, which is a really common presentation. It’s very emotional. And it’s hard work and it’s very raw. There’s tears. It feels like everyone’s in there working on the same thing. And even though the young person, obviously their wish is to not be there and also potentially to die, it’s difficult. But to me, it’s sitting with those going deeper into the underlying reasons, exploring the connections between family members, being open and raw yourself, and being able to sit with distress for however long it takes. I think those moments, that’s good practice to me, rather than jumping in and trying to work out exactly what the label is or what drug to prescribe, actually trying to spend time helping the whole family system help cope with an absolute nightmare situation.

[00:29:31] Lucy: Well, thank you so much, Paul. I want to thank you especially for not using heaps of jargon and complicated words so plebs like me can understand and follow. And honest as always, which I really appreciate.

[00:29:45] Paul: Thanks, Lucy.

[00:29:46] Lucy: Thank you.

[00:29:47] Rachel: Thanks, Paul.

[00:29:48] Paul: Thanks, Rachel.

[00:29:56] Rachel: This conversation with Paul, Lucy, left me feeling really hopeful because it was sort of know. I was left thinking, how good is it that there’s leaders in our mental health field who think this way and who are really working really hard to create a culture in mental health care that is de-medicalizing and is cautious about the pathologizing and how that leads to really limited ways that people can be helped?

[00:30:28] Lucy: And so refreshing to hear that because it’s actually quite brave for a psychiatrist to come out and say, speak so candidly in the way Paul does and always breaks things down for people in a way that everyone can understand. Rather than using all this jargon and sort of losing people along the way. Paul really simplifies and helps you understand the truth of what can go on in the medical world. I find that so refreshing and uncommon.

[00:30:59] Rachel: Yeah, it is. I feel like I’ve learned a lot from Paul, both in this conversation, but also in lots of different ways that I’ve been able to learn from him. And I’m very grateful.

[00:31:12] Speaker A: He gives a gold nugget every time I speak to him. A new gold nugget every day. Thank you, Paul. Thanks for coming on.

[00:31:34] Lucy: Thank you for listening to our podcast. If you wanted to stay in touch or learn more about discovery college, please head to our website, discovery.college.

This episode mentions “The Road Less Travelled” By M. Scott Peck 

Come and listen with:
Lucy (She/Her) – A big fan of pickleball, ice cream and storytelling

Rachel (She/Her) – Social Worker, Dialogical Practitioner, mad footy fan and wildly passionate about transforming the culture of mental health services to be person-led and human rights informed.

Incredible artwork @sharleencu_art

EPISODE TRANSCRIPT –You can sit with us

[00:00:01] Lucy: This podcast has conversations around different mental health experiences that may be distressing for some people. If that doesn’t feel like something you want to explore today, you might want to visit another podcast and come back to us another time.

[00:00:14] Rachel: discovery college acknowledges the traditional owners of country throughout Australia and recognises their continuing connection to lands, waters and community. We pay our respects to Aboriginal and Torres Strait Islander cultures and to the elders, past and present. They have never ceded sovereignty.

[00:00:32] Lucy: In this podcast, we share stories that help us learn from each other, connect us and inspire growth. We want to acknowledge that this way of being, of coming together to share knowledge and stories, is a tradition that has already existed on this land for hundreds of thousands of years as a part of the culture of First Nations people.

[00:00:51] Rachel: discovery college acknowledges the views shared in this podcast are about mental health experiences, but are not a substitute for professional mental health advice and support. The views in this podcast are not the views of Alfred Health, but are the views of the individuals we’ve had conversations with.

[00:01:07] Lucy: The stories we share on this podcast aren’t just stories, but memories of the people who have bravely shared their experiences with us. Remember to take care of yourself as you listen, as well as to take care of the stories that you hear.

[00:01:33] Rachel: Extremely Human is a conversation about the profound experience of extreme states. When we speak about extreme states, we want to explore a more humanistic way to understand people’s experiences that aren’t always shared by others.

[00:01:47] Lucy: Each extreme state holds different meaning for each person, including those related to psychosis, depression, grief and addiction. As we chat with a variety of humans, we explore the important question how can we respond to distress with greater compassion and humanity?

[00:02:05] Rachel: Welcome back to the extremely human podcast titled you can sit with us. In this conversation, we chat with Chris about how the experiences of bipolar can feel, but also how we can learn and grow from them. Chris talks about the importance of inclusion and connection, having a vibe tribe and dropping judgment when caring for people who are having a rough time.

Chris, welcome. We have been asking everybody the same question at the start of each episode. It is, can you tell us a disproportionate reaction you or someone you know has had to something?

[00:02:53] Chris: Thank you so much, Rachel and Lucy. I’m actually so excited to be here. I’m definitely able to give an answer to that question. I remember once I was dancing in the cafe with my mum, just having a bit of a boogie, just a bit of a Saturday morning, just a little bit of a I don’t know, it wasn’t even that out there, actually. It was just moving my arms and stuff. And then my Mum was like, you can’t you can’t dance in public. And this was just after one of my episodes where I was almost hospitalised for bipolar disorder, like having an episode. And then I was just like because I was in that state of mind where I was just like, F you all. I was just like, no, you’re going to watch me now. And I think I did it even harder at the time. And I was just like moving around even more and stuff and did a few spins because I love to do a few spins. And then she got angry at me and then she stormed off. And then I went up to her afterwards and I said, Mum, I was just dancing, you got to just be a bit more light hearted.

And I was getting better. But I think it was just hard for her because I don’t know, my mom is a great mum, beautiful, but can be overprotective and worry about what other people think.

[00:04:11] Lucy: I feel like mums always cop it as getting, like, being the example of the disproportionate.

[00:04:17] Chris: Yeah, I think it’s because the reason why mums cop it with this disproportionate reaction question is because I think that we always want to be ourselves, but then when we become unwell, we become a different version. And usually mums are pretty switched on us to when things start to change. I remember when I first was going through an episode, I remember I was like in my room putting everything into the pyramids and baptising myself with oil. And then my mum came in and she just screamed like, what are you doing? What’s going on? Kind of thing. And she was really scared at the time, but I think was that kind of her viewing me in that state of mind, in that extreme state, she then went to get help and support from headspace.

[00:05:06] Rachel: So we are here to talk about extreme states or how to be with people who are experiencing distress. What does being in an extreme state mean to you, Chris?

[00:05:16] Chris: So I was diagnosed with bipolar when I was 19 and I’m very open with my diagnosis. I think it’s important to aggravate positive change in society by being yourself and being authentic. And I think for me, it’s an extreme state. As someone that’s experienced a living experience with bipolar disorder, I’ve experienced really full on mania and really depressed depression and then also in between, where things aren’t exactly quite one way or the other. One of my least favourite experiences of a state is like, when you’re feeling flat and it’s really hard to shift into one way or the other. And when you’re feeling flat, it’s like you just don’t want to do anything. And it’s probably my least favourite emotion with the mania. What that looks like is rushing thoughts because I think I’m almost like creating magic to myself. And I’ll often say strange things. I’ve often thought I was Jesus Christ reincarnated and often the chosen one. So that’s like the more of the mania. And then the depression is just feeling suicidal, feeling like you don’t belong in this world, feeling misunderstood and just really feeling quite sad and lonely. But I think that the mania is something that’s seen by everyone, because when you’re manic, everyone can see how you’re acting, whereas when you’re depressed, it’s not as noticeable. When I first was diagnosed with bipolar, I actually was depressed for about six months. I was doing a course in psychology, and I hated it, and I really wanted to do something in music, actually. And then after six months of being staying up all night till, like, 03:00, a.m. Crying because I couldn’t get my assignments in time, I went back to university, and then I was manic, and that extreme state was seen by everyone. It was really embarrassing for me at the time because I was in a uni course where I had a lecture at one stage, and I went in front of all of the people in the lecture theatre, and there was like, oh, you have to believe this and that. And I had this thing where I thought that you have to use your left and right hands. Like, I thought it was strange that human beings only have they usually only choose their right or their left. And I was like, when your brain becomes more in tune with everything in the universe and all this stuff, you’ll be able to use both hands. That was really, I guess, for me, looking back, that was extreme because it was publicised. And I think that often when you’re going through these states, you actually don’t realise you’re going through them.

[00:08:04] Lucy: So it doesn’t feel extreme at the time when you’re in them.

[00:08:07] Chris: Yeah, exactly. So I feel like it’s not until you come down from a high or a manic episode. Manic episode can be experienced in different ways by different people. But when you come down, it’s almost like you’ve been drunk or taken drugs and you’ve forgotten your night out and you got this hangover and you’re anxious about all the things you said and did.

[00:08:29] Lucy: Yeah. Does it feel like it’s not within your character when you’re in that? Or why? Do you feel anxious about what happened?

[00:08:41] Chris I think I feel anxious about what happened because it isn’t in my character. I’m an outgoing, charismatic, happy go lucky guy. But I think that definitely acting like you’re Jesus or God or that you know all the secrets of the universe, it scared a lot of people at the time. And that’s, I guess, how people become ostracised and they get pushed away. Because when you experience this extreme state, you think you’re it. You’re the chosen one. You got everything going on.

[00:09:12] Lucy: Yes.

[00:09:13] Chris: And then when you come back down to Earth, it kind of adds to the depression, like when you go into a depressive episode. Because I feel like it’s like because when I was 21 and I went through this one of my episodes, all my friends gone, they were not interested in me anymore. They were scared by how I was acting, and I think a lot’s changed. That was about ten years ago now, but I think that was something for me.I felt like that year, 2012, was funny, because that was meant to be the year that everything ended. The world was over. Yes, but that was the world was over for me. It was like, a horrible year for me. Yeah. And I felt really lonely, and I think I don’t know, I think that maybe people didn’t understand, but I do think people can do better. Yeah.

[00:10:10] Rachel: Well, I really want to hear more about how people can do better, but I was really interested in what you said, that coming down and feeling ostracised contributes to the extreme low. Is that right?

[00:10:23] Chris: I feel like that is something that definitely contributes, because you feel like you’re very alone, because you go through this experience where you feel like you’re connected to everything, connected to the universe, connected to.. You kind of have this feeling where you’re in tune, you’re in sync, and then to go through when you have the yeah. Like, I just feel like I used to literally go to McDonald’s or KFC every day, like, once a day. That was my way of coping. I didn’t have any friends at the time, and I was like, all right, is it McDonald’s or KFC today? Which one spin the wheel? Which one is spin the wheel? Exactly. And it was like there wasn’t a lot of joy in my life when I went through the depression. I think that depression is a lot harder to go through because you’re constantly trying to lift yourself up after you’ve been pushed away or ostracised or things like that. But the difference is that as I’ve gotten older and as I’ve gotten more in tune myself, and as I understand my condition more, I realise that whether I’m manic, whether I’m depressed, or whether I’m at a good level, like, where I’m feeling good, a lot of people call it baseline. It’s not my favourite term, only because I feel like baseline, it’s like a permanent baseline, like a permanent level of being. Like, when you’re stable, you’re only at this certain, which is not the case, I think you can have depressed days or manic days, or you might not sleep one night, and then you have the next day. You’re feeling like you got adrenaline rushing through you. But I feel like as I’ve gotten older and with psychology, I’ve realised that this is all me. Everything that I’ve been through, everything that I’ve been, whether it’s an extreme state of a high or a low, it’s still me. It’s just another version of me. And once I got to learn how to accept that, and once I got to learn that, I was like, you know what? I do have an underlying mental illness or I do have a living experience, it allowed me to kind of when I do go through depression now, compared to back then, Rachel, where I felt ostracised. Now I feel like I might just have a day where I eat some junk food and watch a movie and be compassionate to myself and learn how to treat myself better. Whereas back ten years ago, I just couldn’t stop thinking about how I acted in front of other people, if that makes sense.

[00:12:51] Rachel: It does make sense, yeah. So you’ve really learned to respond to yourself differently.

[00:12:56] Chris: I feel like that’s the thing. You have to learn how to respond to yourself differently in order to regulate yourself and in order to because if I’m sad now, I actually allow myself to be sad. I cry. I might put on a sad movie. I might listen to sad music and just cry. And I allow myself that because I feel like emotions are so important and feelings are so important. Whereas when I was younger, I used to be a people pleaser, and I used to kind of say that side of myself, the depressed side of myself, I never showed anyone, like, that side of myself that was up at 03:00 a.m. doing those exam notes or doing those whatever I was doing at Uni. It was different for me back then because I never showed my vulnerability.

I was always trying to keep that side of me away. Whereas now I think sadness is beautiful. I think there’s something beautiful about- what do you think about emotions? Do you think that they all have a place?

[00:14:01] Lucy: Absolutely. Like, I love a good crying session. Look forward to it.

[00:14:06] Rachel: Me too. So healing.

[00:14:07] Lucy: It is, yeah.

[00:14:08] Rachel: And human.

[00:14:10] Lucy: And human. But it kind of sounds like, Chris, that you’re learning more about yourself, or each time that it’s happening, it’s revealing something about you more. When we have the term relapse and things, it kind of implies that people are taking a step backwards, but it might actually be a step forward in getting to know yourself and healing. What do you think about that?

[00:14:32] Chris: I love that because I think that healing is a big thing. I think that we can be healing across our life, and I think that there’s no one time where we don’t learn, we don’t heal. And it was interesting because my psychologist, he said to me, Chris, every time you consider that you go and you think about, like, in quotation marks, like a relapse, you actually go through growth.

[00:14:54]Lucy: Yes.

[00:14:55] Chris: And the way he reframed that, it was very simple. But every time I think about anything that I go through now, like whether I’m on a high low, whatever, I think it’s just growth. Because every single time I’ve gone through something, like an episode, like I did that time, I was hospitalised, and the aftermath of that was really depressed, and I wasn’t in a good place. And I remember I was suicidal at the time, which was the start of 2021, and I was just like, I don’t want to be in this world anymore. Honestly, I just don’t know why I’m having to go through all these things. Like, I felt like a bit hopeless and a bit victim like. And then I ended up telling both my mum and my best friend and both had the same reaction, like they didn’t want to hear it, blah, blah, blah, that kind of thing. And I think I just was really firm. I said, no, you’re going to have to hear it, you’re going to have to listen to it, because this is the way I feel. And in order for me to process what I’m going through and accept what I’m going through, I need to tell you that I’m not feeling like I want to be in this world anymore. And I had to push through and both of them came with such support afterwards and everything like that. And over time, within a few weeks, I wasn’t feeling suicidal anymore. So I think that was for me. I took one of my psychologists, said, take a relapse is growth. And I just thought, you know what, I need to be a strong person, I need to be vulnerable, I need to tell people how I feel and I need to reach out because I’m going through a distress and I need to figure this out. So I feel like if you can kind of look at things in a different way. I feel like the episodes that happened, like end of 20w20 and 2021, and then later on in the year, I had another manic episode, but I kind of bounced back from them a lot quicker. And every time I’ve had some sort of episode, I’ve gotten to know myself better. I think it’s important for all of us as human beings to get to know how to regulate ourselves and how to cope in different situations and not worrying about how I’m perceived, but just focusing on reaching out.

[00:17:12] Lucy: Yes. Because it’s sharing the load with someone else.

[00:17:15] Rachel: Yeah, I was thinking the same thing. This might sound weird, but I was thinking it kind of feels like a bit of a gift to give your mum and your best friend to say, I need you to hear this. Just hear it. I need you to hear it.

[00:17:28] Chris: I think humans are very programmed to want to do the easy route, but I reckon that my nun, when I was growing up, he used to say to me, “Christopher, life wasn’t meant to be easy”. And I used to say to him, what are you talking about? It’s meant to be fun. It’s meant to be great, exciting and all this stuff. And then I got to adulthood and then I had a lot of responsibilities, like we all do, and I was just like, wow, he’s right. It wasn’t meant to be easy. And I believe in life you have to work hard on yourself. Someone that’s diagnosed with mental illness, automatically they’re thrust into a position where they have to work on themselves. But I think everyone has to have some sort of self care or some sort of awareness of who they are as well. Because if you kind of go about life thinking that the easy road is you have to kind of…

[00:18:19] Lucy: And thinking that everything’s just going to be given to you as well. I remember reading in the book The Road Less Traveled, and one of the first pages says along the lines of life’s not meant to be easy. But when you act like it is, that’s when the real pain comes in and the struggle. And I was like, oh my God, it’s so true. But if you go with the lens of actually, this isn’t meant to be easy. No one said it was going to be easy. Why am I thinking that? You kind of go with a different mindset.

[00:18:51] Chris: If you assume that everything’s always going to be easy, then you’ll be shocked every time something’s hard. And so every time you get to a point where something happens to you and you’re like, you won’t be able to ever deal with anything, it’s like, I have to bring my car to the mechanic, like next week and it’s going to cost me $800. Not what I would love, obviously, but it’s just part of life. I think that for me, because I’ve experienced these extreme states of highs and lows and everything in between, I’ve gotten to recognise that to surrender to the process of life a lot more, everyone’s different. I’m spiritual. I believe in God and the universe, and I believe in people attracting to each other because they’re like minded and things like that. I do think that when it comes to obstacles last week I didn’t know that I would have the obstacle of the mechanic. But then this week I did. And then I was like, oh, that’s just the way it is. I have an old car. That’s just the way it is.

[00:19:52] Lucy: Totally and I was thinking the same thing last weekend when it was nighttime, it was dark, it was raining, and I got locked out of my house and I was like, I had no phone, no keys to drive anywhere. And I was just thinking, I wish this wasn’t happening right now. All my neighbours got around me were like people coming over with ladders to get into my house. Everyone was banding together. So it’s like I was actually thinking when I got inside my house, I’m like, I’m really glad that happened because it reminded me I have really good neighbours and people are good. If that never happened, I wouldn’t have got that opportunity to chat with my neighbours.

[00:20:30] Rachel: I love that saying, cream rises to the top. Reminded me of with your neighbours, and people go to the top when they’re good people. I wonder what you were saying before. You think we can do better? When you’re talking about how we support people who are in extreme states, what do you think we can do better?

[00:20:49] Chris: I just wish that as a society, we were more inclusive and more prone to helping people feel like they belong or have a sense of belonging. I think about the Mean Girls film and how there’s this one scene where they’re like, don’t sit with us. And I just think we need to be the opposite. It’s like, I want you to sit with us. I want you to be involved. I went out clubbing on the weekend, and there was this man on the outskirt, and he was probably like twice my age or whatever. He was on the outskirt of the dance floor, and my friends are looking at him, and I was like, why don’t we just involve him and come over? And he was dancing with us. He got photos taken with us. People from the nightclub were taking photos of him with us. I was just like, this is so cool. This is so cute. And I just feel like people need to embrace others more. I just feel like along the course of time with social media and things like that, we all use our phones and we all kind of are disconnected in some ways. But I just wish that people made more of an effort, like with your neighbourhood. And I think that when it comes to people that are going through extreme states of mind, like, really depression, anxiety, or mania when I was going through mania, I just wish when I was younger, the people treated me like the same, but they just maybe said, oh, Chris, blah, blah, blah. I didn’t have the right friends then. The thing is that I bang on about a Vibe Tribe. So basically Vibe Tribe is essentially I believe everyone vibrates on a certain frequency, and I believe that people are brought into your life. And I think the thing is that when you have a Vibe Tribe, there are people that you support, and they support you equally. Everyone can find their people. And when you find your people, it should be that you’re compatible. So you get along most of the time, and if you disagree, it’s okay because they give you another perspective. I think that for me, I honestly think that in general, people can do better by being more supportive, by being more open minded and less judgmental and more curious. Asking questions like, what are you going through? I’ve told my family and my friends, if I’m going through stuff, to ask me, like, first, are you okay? And then if it’s like, yes, and then the second question, are you stressed? It gives people insight into the fact that you need support. Do you know what I’m saying?

For me, when my mum said, Are you okay? I might say yes. But then she goes, Are you stressed? I say, also yes. So is there anything I can do? I’m like, oh, can you just hear me out? I need to just vent about this situation. And it gives the kind of tools for other people to support me better.

So asking me questions about how I’m actually feeling rather than judging me and saying, oh, you seem bit racy, you seem bit flat, or you seem to this or you seem that. I think it’s good to observe, but it’s also good to be curious and ask questions. Does that make sense?

[00:23:55] Lucy:Absolutely. The curiosity is huge because I feel like when something becomes foreign to us, like maybe you saying that you feel like you’re Jesus Christ. Some people might freak out about know and then that is what stops the curiosity. But if you actually explore, oh, what does it feel like to be like Jesus Christ? You’re like, actually it feels amazing. Then there’s a whole different conversation that can open up rather than being fearful about everything all the time.

[00:24:22] Rachel: Yeah, well, you can’t be curious if you’re being judgmental. I think dropping judgment allows curiosity.

[00:24:29] Chris: I think that we need to be more aware of how we interact with others and be kind because you just really like it’s cliche, but you just don’t know what another person is going through. And it’s like the times that someone in the recent years I’ve had relapses so like 2020 and 2021 actually had not a relapse, but I called it a hiccup this year because I went and did I’m a part of a pilot episode of a TV show and we filmed on set for eight days straight. And I had the best time, but then I went straight back to work and then I don’t know, people started noticing things about me. Like I was acting a bit different, a bit strange, and saying some strange things and not able to regulate. This is only like four months ago, so these episodes can creep up on you at any point. And sometimes if they creep up on you big time, if you don’t listen to people and you just go about your things, it become a full blown manic episode. I didn’t realise it, but I overworked myself in the acting. In hindsight, I could have easily done the one day of acting and then not helped out. But I wanted to be on set and I wanted to feel the excitement and I did. I was so excited. I loved it and everything like that. And then my doctor said to me, I went and saw my doctor after there’s a few people at work saying, you seem to be different and family and friends. And I went to my doctor and my psychologist and he’s like, you’re just being you. You’re just excited. And I don’t want to change your medication because I want you to feel this excitement. I don’t want to dull this down for you, which is a really good thing. Most of the time, people that are like doctors, they might want to prescribe more medication to kind of dull the senses. But he was like, I don’t want to change this for you. And I honestly think that I would not do it any differently. I don’t regret what I did because I got to experience what I was like on set. I’ve got a vibe tribe where I feel supported even when I’m going through these episodes, which is so different to how I used to feel. And that’s the thing. It’s like not everybody with mental illness has this kind of support.

[00:26:39] Rachel: It really makes me think how the importance of feeling like you belong somewhere or belonging and acceptance allows that sort of non judgmental support to happen.

[00:26:50] Chris : I think people are getting better at becoming more supportive. I think, for sure it’s not all bad. But I do think that the more that we can learn about ourselves, the more control that we have. If you’re listening and you’ve got someone that doesn’t know how to support you, maybe like asking them to ask you those questions like, are you okay? Are you stressed? Is there any way that I can support you? Do you want me to listen or do you want me to give advice? Even that question, do you want me to listen or give advice is really powerful because sometimes you need advice and sometimes you just want someone to listen. We’re not fragile. I think that we might have gone through things that make us feel fragile sometimes, but we’re not permanently fragile and chronic that we can’t figure out life and that we can’t because when things are provided for people, they’re acting like they’re disabled. It just makes the people feel like that they can’t do anything without the system and they can’t move on with their life. I wish that more people would enable people to the point where they have autonomy, where they have the freedom to take risks. Because a lot of the time when people are depressed, they’re like, what do I do with my life? What do I do? The best thing I felt like in my life, whenever I’ve gone through an episode, an extreme state is to try. Try something different, try something new. When I was going through my stuff, I decided, you know what? I’ve been all my life, all my life saying to people, oh, I won’t do a music degree. I won’t do this or I won’t do that, because apparently those degrees don’t make you any money. Which is the reason why I was encouraged not to do them. And I ended up doing psychology, which I hated. And then I ended up getting out of COVID and being like, let’s do what I’ve always loved. And I think hobbies or a creative outlet are so important for every human. It doesn’t matter whether you’ve got an illness or not. So I did acting lessons, and then I did an acting workshop, and then last year, I did singing lessons all last year because I was like, I want to record my own song. So these things I hadn’t done since I was, like, in high school because I kind of pushed them aside. And it’s funny because when I was diagnosed with bipolar, I felt like anytime I was manic, I was like, oh, Chris has got makeup on. Chris is unwell. Oh, Chris is doing his nails. Oh, Chris is doing his eyelashes. You know what? I’ve always been like that. I’ve always been someone that’s eccentric. Now I finally feel like I can be creative and free, and I can be Chris and not related to the mania. That took a long time to segue a little bit. I actually think it’s a gift. It’s funny because a lot of people probably would look at these experiences and think, this is not a gift at all. This has been torture. I’ve had to go through extreme highs and lows. I call it my superpower. I call myself a bipolar bear. I’ve kind of owned it and took an ownership of it and accepted it. And I’m happy to talk about it. And even with my past, I can talk about all my things. And I’m healed because I had, like, three years of therapy, talk about all this stuff. I’m not affected by my past anymore. And even when I wrote the song, the reason I wrote the song was to overcome was about overcoming abuse. And it was about standing tall, rising from the ashes, and becoming a bigger, stronger, better version of myself in hope that people that will listen to it also felt like that when they were listening to it. And so I actually think it can be a superpower. And what I mean by that is, because I’ve experienced these extreme states, I have the ability, like, with my acting, for instance, because I’ve been really low and really high, I can funnel that into acting into different ways. It’s always seen, mental illness as a negative thing. But I’ve written songs when I’m manic and I’ve done creative outlets, and I don’t think it’s all bad. I think that sometimes if you get better at knowing yourself and riding the wave and people learning how to treat you better, it’s also a really positive thing as well.

[00:30:47] Lucy: So we wanted to end the episode, all episodes, by asking if you’ve seen anyone sit with distress?

[00:30:55] Chris: Well, oh, there’s been a few, actually. So one time when I was going through manic episode, my cousin, I went and stayed with him for about a week, and he was very supportive. He never kind of talked to me in a different way. He just spoke to me as if everything was all good and I’ve had a few of those experiences. There’s someone else as well, another friend that we did a video call, and he was playing guitar, and I was singing to him, I don’t know, probably for like, an hour, but I was just singing away. And he’s like, do you remember that time when you were manic Chris and I sang on the guitar with you over video call? It’s like, oh, my gosh. I’ve been very lucky and privileged to have people around me that have been there for me and have supported me.

[00:31:40] Lucy: Being there for someone, meeting them as they are is such a easy thing to do. Like, you might be a little bit more energetic or maybe a little bit more down, but you’re still you. You’re still Christopher Stefano.

[00:31:55] Chris: Still the same person, just on the side.

Thank you so much for having me.

[00:32:01] Lucy: Thank you for coming. This has been epic.

[00:32:03] Chris: Thank you so much, both of you.

[00:32:05] Lucy: Thank you, Chris.

What a fun and energetic episode with the one and only Chris Stefano.

[00:32:13] Rachel: It was, wasn’t it? I adored this conversation.

[00:32:16] Lucy: Yeah.

[00:32:17] Rachel: It left me feeling a great amount of joy.

[00:32:20] Rachel: Me, too. I love the part in this episode where Chris talks about following your passions and how important that is when he said he was always interested in acting but was sort of dissuaded from doing that because people didn’t think it was a good career path. But I just feel like a lot of people in general, if you live your life in accordance with what you think other people want from you that can contribute towards such poor mentality and depression and anxiety.

[00:32:50] Rachel: Yeah. I wonder how many people could relate to that in different ways across their lives. There’s definitely to lesser extremes ways, subtle, but when there’s this disconnect with how you see yourself and how you think the world around you sees you can be really hard to reconcile. I got to say. I’ve got to make comment about the Vibe Tribe. I’ve always thought about how important it is to feel like you find your place and how hard it is when you don’t. Yeah, but that word Vibe Tribe, I will plagiarise that all the time now.

[00:33:30] Lucy: I also just want to shout out that Chris has followed his passions and has released a song on all platforms called Like a Page, which is an awesome dance track for those wanting to have a bit of a boogie.

[00:33:44] Rachel: It is excellent. I had the absolute joy of riding in the car back from the recording with Chris, and he played the song for me, and it was so groovy.

[00:33:55] Lucy: So catchy. Get ready for an ear-worm.

[00:33:57] Rachel: He’s done a great job, and congratulations to him.

[00:34:00] Lucy: I hope you enjoyed the episode and I hope you enjoy like a Page.

[00:34:18] Lucy: Thank you for listening to our podcast. If you wanted to stay in touch or learn more about discovery college, please head to our website, discovery.college.

Come and listen with:
Lucy (She/Her) – A big fan of pickleball, ice cream and storytelling

Rachel (She/Her) – Social Worker, Dialogical Practitioner, mad footy fan and wildly passionate about transforming the culture of mental health services to be person-led and human rights informed.

Incredible artwork @sharleencu_art

EPISODE TRANSCRIPT – Stability in the storm

[00:00:01] LUCY 

This podcast has conversations around different mental health experiences that may be distressing for some people. If that doesn’t feel like something you want to explore today, you might want to visit another podcast and come back to us another time.

[00:00:14] RACHEL

discovery college acknowledges the traditional owners of country throughout Australia and recognises their continuing connection to lands, waters and community. We pay our respects to Aboriginal and Torres Strait Islander cultures and to the elders, past and present. They have never ceded sovereignty.

[00:00:32] LUCY

In this podcast, we share stories that help us learn from each other, connect us and inspire growth. We want to acknowledge that this way of being, of coming together to share knowledge and stories, is a tradition that has already existed on this land for hundreds of thousands of years as a part of the culture of First Nations people.

[00:00:51] RACHEL

discovery college acknowledges the views shared in this podcast are about mental health experiences, but are not a substitute for professional mental health advice and support. The views in this podcast are not the views of Alfred Health, but are the views of the individuals we’ve had conversations with.

[00:01:07] LUCY

The stories we share on this podcast aren’t just stories, but memories of the people who have bravely shared their experiences with us. Remember to take care of yourself as you listen, as well as to take care of the stories that you hear.

[00:01:33] RACHEL

Extremely Human is a conversation about the profound experience of extreme states. When we speak about extreme states, we want to explore a more humanistic way to understand people’s experiences that aren’t always shared by others.

[00:01:47] LUCY

Each extreme state holds different meaning for each person, including those related to psychosis, depression, grief and addiction. As we chat with a variety of humans, we explore the important question, how can we respond to distress with greater compassion and humanity?

Welcome back to the extremely human podcast. In this episode, we chat with our guest, who describes how it feels to experience psychosis. We talk about what they found helpful and not so helpful while being in that state, and what life after psychosis has looked like in their life. We touch on the different ways phenomena like psychosis can transform people and how we can better care for people going through psychosis.

[00:02:40] LUCY

Here we are, back in the studio.

[00:02:42] GUEST

Thanks for having me.

[00:02:43] RACHEL

Oh, we’re so lucky to have you with us. I can’t wait for this conversation.

[00:02:47] LUCY

Me too.

We want to kick off the conversation first just by asking have you or anyone you know had a disproportionate reaction to anything?

[00:02:59] GUEST

I have a very close friend who convinced herself that she had Botulism when she made olives from her olive tree and assumed that they’d been contaminated in the process. So when she tried an olive, there was numbing of her face and tingling and she just goes, oh, my God, Botulism, and rushed to the ED, who sent her home without the diagnosis. And then she was like, no, this is like, definitely botulism. Went back to the Ed and demanded to be seen again. She could have actually had Botulism, so it was sort of fair enough. But it was also just likelihood of it having Botulism from the olives was actually quite small.

[00:03:49] LUCY

Just a lick of the olive.

[00:03:51] GUEST

Just a lick of the olive and, like, numb face.

[00:03:55] LUCY

What actually is Botulism?

[00:03:59] GUEST

I think it’s a poisoning that happens through contaminated food and water.

[00:04:03]LUCY

Right, okay. So what was the numbing of her face?

[00:04:08] GUEST

I think it’s a symptom.

[00:04:11] LUCY

Okay. She might have been on the money then.

[00:04:12] RACHEL

What happened to all the olives?

[00:04:15] GUEST

Yeah. I don’t know if they got thrown out or potentially given away after they were deemed clear.

[00:04:24] LUCY

Love it. Thank you. Great example.

[00:04:26] RACHEL

Thanks again for being with us today. As you know, we’re here to talk about extreme states.

Maybe we can start by you telling us a bit about what your experience of an extreme state is.

[00:04:38] GUEST

I have experienced many different kinds of extreme states, but what I would associate mostly with that term is psychosis. I started experiencing psychosis, like, seven or eight years ago. Those experiences I would describe as an extreme state because it’s very discombobulating and disruptive. That’s the thing about psychosis. It’s really like the whole spectrum of thoughts, like, going traveling through your mind at the speed of light over however many days or weeks. I can piss myself laughing when I’m psychotic sometimes because whatever’s going on in my head is just so hilarious and I’m the funniest person in the world and I’m laughing to myself, but in the same day, I’ll be terrified of other things going on. You very much sort of lose touch with reality, in my experience. I lost touch with reality the way I’d always known it to be and started perceiving and thinking in sort of disordered or different ways.

And that in itself became quite an extreme experience.

[00:05:55] RACHEL:

Wow. I’m thinking about the word discombobulated.

Really makes sense when you describe it like that. Yeah. So that sounds maybe confusing.

[00:06:07] GUEST

Yeah, I mean, it’s definitely confusing. I think it’s confusing from the outside and the inside because sometimes you lack insight in a psychosis and you could be thinking, all of these things in my mind are happening and be very absorbed by thought or those feelings. In that sense, it is confusing. I’m sure it would be very confusing to see someone psychotic and not be able to tap into their experience of reality either.

Maybe that’s even more confusing when you’re looking at it from the outside than experiencing it on the inside.

[00:06:45] RACHEL

Maybe.

[00:06:46] LUCY

Did you know that you were in that state of mind while you were in it? Did you know that it was different to how you usually perceive things, perceive the world?

[00:06:54] GUEST

For me, it wasn’t as soft or as easy as having certain thoughts and going, okay, these thoughts aren’t real. Because I feel like if I had that capacity, I might have been able to switch out of it. But often I’ll go so fast and hard into thoughts that are disordered or within an unshared reality. It’s not until I’m sort of intervened, hospitalised or medicated or it’s not until a certain point of recovery that I think back and realise that those moments were me in a psychosis, if that makes sense.

[00:07:33] LUCY

Yeah, absolutely.

Because it takes you like you’re sort of in it like a fish that doesn’t know it’s in water.

[00:07:41] GUEST

Yeah, it’s sort of like the mental environment that you’re swimming in. I think what makes it such an extreme experience on one hand is that people really see that as a problem when you’re not thinking or behaving sort of normally people. Really in my experience, I think I’ve really not been allowed to go through that because institutionally anything that’s sort of like out of a normal spectrum would be considered towards the side of illness. So you’re treated in that way. And I’m not sure that some of my experiences would have been less extreme if I could have been held in a different way when I was going through certain psychological moments, if that makes sense.

[00:08:27] LUCY

Yeah, absolutely. What do you think from your experience? Are the things that are helpful when you’re in that mind state? Because you said before it’s also hard for people who are watching someone who is in that state, but they can also help and they can also be there. So when you were saying that if you were held in a certain way, you might have had a bit better of experience, were there things that people did while you were in that state that helped you? Even just small gestures.

[00:08:59] GUEST

I think sitting with the situation can be really helpful rather than if someone has the capacity to sort of sit with you and be calm and be compassionate and be sort of like a stability in the storm, that can be really helpful. But I also think that it probably looks different in every scenario and depending on each individual and what they’re going through. And one of the things that I think everyone could do to support people going through such an extreme state would be to destigmatize their understanding of mental health and sort of appreciate that we have a whole spectrum of psychological experiences, and it’s not that some are better than others. And sometimes life’s hard. And your thoughts and your mind and your psyche need to express that, and you need to be able to go through your own problems. You can’t just suppress them. To be allowed to sort of exist in that space I think is really important. I think we should spend less time trying to shut down people’s symptoms rather than exploring them.

[00:10:17] RACHEL

I feel really moved. Really interesting point you made that sometimes how people responded to you in those moments actually made it more extreme for you.

That brought up lots of thoughts for me around feeling isolated or alienated and maybe that’s what explains how it becomes more extreme. But they’re my thoughts. What are yours about that?

[00:10:42] GUEST

Well, already from the get go, being in a psychosis is quite an isolated experience. I think it’s probably quite common to withdraw socially or from the workplace or from study or when you start going through those kinds of experiences. And also in recovery. It takes a lot to recover after you’ve been in an extreme mental state. So sometimes you have to take a sort of put a pause on all your goals and your other things in your life. So that can also feel sometimes like a withdrawal from the world or something. And that can sometimes be isolating. I think it also can be really helpful to, if you go through something extreme to put a pause on life and take time to do the healing. You can learn so much from an extreme mental state when you really take time to practice the self care that it takes to recover. I think that’s actually been a really amazing positive that’s come out of going through something so distressing. But yeah, it can be isolating if that answers your question.

[00:11:50] RACHEL

It does. Do you think that fear plays a role in how people are responded to you?

[00:11:58] GUEST

Yeah, I think fear is so big when it comes down to mental health.

I think it’s almost so stigmatised in society to go through a mental health rupture. You generate fear around going through it in the first place. It’s not like, oh, I’m expressing and experiencing something difficult right now. It’s like oh my God, I’m not normal, what’s going on already? There’s fear associated with feeling like your mental health is not in a certain way.

And then I think because there’s that embedded fear, it’s reflected in different levels of the mental health system, of whether you have a friend or a family member going through something. I think I’ve seen people become isolated to a point that’s unnecessary because of a misunderstanding of what a mental health condition is and how much fear we need to attach to it.

[00:13:03] RACHEL

What do you think? Some of those things that we associate with mental health conditions that generate that.

[00:13:10] GUEST

Fear, I suppose a really common thought would be or like part of the stigma would be that people who are going through psychosis or who are schizophrenic are violent and aggressive.

But I think statistically we’re actually more likely to be violated than to commit violence. I think people make assumptions once they hear the word or the diagnosis and maybe someone’s going through a hard time, it doesn’t have to be diagnosed. But I think, yeah, sometimes people can make assumptions about what that person’s going through and not resist the urge to lean in and maybe that person’s pushing other people away or pushing the world away. And so it’s very hard. It is a very hard space to navigate.

[00:14:02] LUCY

I think a lot of people don’t understand or don’t realise that the person who’s going through the extreme state, they’re often very scared themselves. We don’t always keep that in mind when we’re caring for people that are in that state.

[00:14:15] GUEST

Yeah.

[00:14:16] RACHEL

What will we be doing differently if we were keeping it in mind?

[00:14:19] LUCY

I’d just like to see people having more conversations with the person who’s going through that and not treating them any differently. I think just being kind and compassionate, but I think sometimes we can look at people in those states and perhaps be a little bit condescending or maybe even treat them like children.

And I think from my own experience of being in psychosis is that one of my best friends at the time, she never treated me any differently. Even when I was in my heightened state of psychosis, she would still take the piss out of me a little bit. And even though I was in a different state, I still appreciated that and I could still laugh at what she was saying. And I knew we were just having a little bit of banter. And that shouldn’t change. Like, your humour and stuff shouldn’t change when someone’s gone into a different state. You can still feel it.

[00:15:11] GUEST

I agree. I think the best experiences I’ve had is when people just arrive right with me and treat me the same or can bring like a lightness to the situation because they know you and they trust that you are who you are. Totally. It’s like people who think that you’re not who you are anymore when you’re going through that. It’s like, oh, I don’t know this person.

That’s the damaging sort of reaction, I think. And they’re like, I don’t know who you are. I don’t know. I mean, maybe that’s a valid reaction for some people. It is a very hard situation to navigate. I know that sometimes when I’m in psychosis, I don’t behave in the same way to my friends that I would normally. So it’s very hard for them to be like, well, they’re human. They’re going like, what does she think of me? Or am I not a safe person for her? Or should I not be here?

[00:16:05]RACHEL

It just makes me wonder that those that can experience some consistency in how people engage with them, it might keep you connected yourself to that part of you as well, that might otherwise feel a little bit hard to reach.

Can we talk a bit about what you think are some other helpful things that others have done or might do when you’re in an extreme state?

[00:16:33] GUEST

Just being open to your experiences has been very liberating for me not being too shy to own the experience, because that’s also been quite a long journey of coming to terms with the fact that I had this experience. And not to just push it away and wish that it had never happened and try and move on as if nothing had happened and try and catch up. Like for a long time I felt like I was behind everyone else because I had had years of mental health problems and I really wanted to have everything my friends had. But now I see that the psychosis was something I needed to go through. It’s helped me understand myself in a deeper way and it’s helped me learn how to look after myself better than I ever could and it’s helped me have insight into myself and other people as well. It’s the insights that I could never have had if I hadn’t gone through this experience. You’ve really got to embrace the whole experience for what it is, if you can. And that really is quite empowering. It can be as well.

[00:17:49] LUCY

I think that’s such an important all of that was so important. I think there’s this idea when we talk about recovery is like there’s almost like this underlying message that you have to get back to the person that you were before it happened and there’s a lot of pressure to do that fast. Like you were saying before, it’s really important to have a pause after you’ve gone through something like that because it’s life changing. It changes you for the rest of your life whether you want to admit it or not. But I feel like a lot of people when you come out of that, it’s sort of like, oh, so when are you going to get a job? Why is that the first thing that we’re trying to get back to? Because as you said, it’s part of how we evolve and it’s part of how we grow. And if we’re always trying to shut down these experiences for people or not letting them run their course, then we’re missing an opportunity to become better because these experience can make you better as a person.

[00:18:46] RACHEL

I really like the concept of adversity.

Overcoming such adversity really does enable an opportunity for such self discovery or self healing that many people go about their lives not really having.

[00:19:01] GUEST

I think psychosis. In hindsight, I would never wish it upon anyone, and I really hope I don’t go through it again. But it sort of was like the crisis that I needed to start up again in a new way and sort of go back to square one and building myself and understanding myself all over again so I could exist in the world in a more authentic way. And I think that’s part of the journey that’s happened. Even though psychosis is just the most extreme thing ever, like psychologically on one hand, and then if you start behaving strangely, it can be very extreme in that way too. So it’s not like an easy emergence, but it can be very constructive as well as destructive.

[00:19:45] RACHEL

Well, some people have I’ve heard a lot of people refer or maybe not a lot, but some people refer to it as like a survival response. It’s kind of your mind’s way of calling out something or helping you to kind of express something that you don’t know how else otherwise to express or resolve.

[00:20:06] GUEST

It’s almost like your psychology is like expressing itself without you choosing that. Psychology, I think, is something we don’t fully understand and is very mysterious. I think it’s important to embrace all of that, though, because by limiting what’s normal, what’s functional, what’s acceptable, we really suppress people’s natural, individual, unique psychology. I think all the negative thoughts and negative things that are experienced in psychosis can be transformed into positive thoughts with potentially in the right situation, if you are handled in the right way.

[00:20:45] RACHEL

When you say handled in the right way, in those moments that make that possible, what do you mean?

[00:20:52] GUEST

I suppose at that point, I’m thinking of, like, hospital or I mean, I’ve been to hospital many times. I was hospitalised once in Indonesia, and that was a really interesting experience because I was literally put behind rusted metal bars with a squat toilet in the corner and, like, a metal bed in the side and a camera watching

RACHEL

Gosh, that does sound like prison, doesn’t it?

GUEST

Yeah, that was like, prison. And I just think that was very reflective of the whole idea behind mental health psychiatric wards. It’s like a place to be monitored.

[00:21:22] LUCY

It comes back to how we were talking in previous conversations about it almost feels like you’re being punished for going through something that you can’t control. You’re meant to be there for healing, but then it feels like, is this a hospital or is this a prison? Have I done something wrong?

[00:21:42] GUEST

Yeah. And I think sometimes you can feel like you’re being incarcerated by being in hospital because you’re put on a community treatment order, which means you are medicated enforceable by law, and you have to be treated. And it can feel very restrictive and controlled and enforced. And those only exacerbate the symptoms of psychosis. It’s not the right environment for someone who’s going through something so sensitive and extreme.

[00:22:12] RACHEL

It feels like it needs to be softer and gentler.

[00:22:15] GUEST

Oh, it’s totally hardcore. It’s like a very hardcore experience.

[00:22:18] RACHEL

Well, the experience of the extreme state, but also the experience of how people respond to that is hardcore.

[00:22:26] GUEST

Yeah, because it’s like it’s perceived as such a crisis. I’ve often been, like, entering into a psychosis, and then only when it’s gotten so extreme is there intervention. If there was, like, more facilitators maybe, of sitting with psychosis in those earlier stages, I’m sure it could be those ultimately extreme scenarios could be avoided. I think it’s really about deepening our understanding of the human experience and allowing the human experience to be whatever it is and not trying to suppress it into something that it’s not.

[00:23:06] LUCY

So we often hear about what happens during psychosis, but we never really get to see or hear about what happens after psychosis. What does it look like for you in your life?

[00:23:19] GUEST

Recovering from psychosis involves a lot of getting back into life in different ways. I’ve made lots of changes in my daily routine or in my lifestyle, learning about medication along the way and how to help my body cope with it. Because it is quite a heavy thing to put into your body, knowing when to rest and when to tap out and when to just take time for yourself, which is really important when you’re recovering from psychosis, because doing a million things can even if you feel like you want to get straight back into it, taking the time is really important.

Reflecting forgiving yourself for doing embarrassing things or doing wild things. And sometimes you have to forgive other people in your life for reacting in a way that wasn’t good for you or not treating you in the best way, making your relationships count so that you have a community around you that supports you in all your forms and states and who is happy to see you well and thrive. I do a lot for my health now. I do talk therapy and I do acupuncture and I have people in my life that really help me dig deep into my history and my life. And they help me make connections between my childhood and my day to day life and why I ever became psychotic and what goes on in my psychosis. And making those connections is really healing and really encompasses the whole experience. You have to be really strong to get through it. It requires an inner sort of strength that I think everyone has and it’s like one of those things that helps you tap into that.

[00:25:13] RACHEL

I guess the thing that keeps coming up is just that forgiveness and compassion is really impactful.

[00:25:24]GUEST

Yeah, I haven’t fully recovered or anything. I’m always trying to be vigilant about maintaining balance.

[00:25:36] RACHEL

We try to finish these conversations with this last question. I wonder if you can tell us a story or about a situation that you’ve experienced where you think someone around you has handled distress very well.

[00:25:54]GUEST

I would just come back to my friends, different friends, have just really been there without judgment and have been through some really hard experiences with me but have gotten through and they’re still here with me and we have great connections now. And there’s many scenarios where I’ve had a friend take me to get a depot or come and visit me in hospital.

They’ve advocated for me and worried about me and kept tabs on me even if I’ve disappeared.

[00:26:29] RACHEL

So got this thought about really just hanging in there and being present in your life and riding the waves.

[00:26:37] GUEST

Yeah.

That was such an epic conversation,

RACHEL

Wasn’t it?

LUCY

It was. I just want to thank you so much for doing this podcast with us because you’ve been such a big part of the journey of creating it as well. It’s not the easiest topic to talk about, and I think the way you articulate this experience is going to be very helpful in helping reduce some of the stigma which you spoke about. And you can tell that this experience is definitely giving you so much wisdom because you’re definitely wise beyond your years. So thank you for sharing that with us today.

[00:27:11] GUEST

Thank you.

[00:27:14] RACHEL

Wow, Luce, I really feel very grateful to have had the opportunity to speak with them with this guest. And it’s a really rare opportunity for me to be able to really talk to someone about life after psychosis.

[00:27:28] LUCY

Yeah. You don’t really hear about it much, do you?

[00:27:30] RACHEL

It was really incredible to hear that journey. What I really felt grateful for was what I heard was this emerging self compassion that happened for this guest along the way. Really inspiring in many ways, and some bit of upsetting parts to that story as well.

[00:27:54] LUCY

One of the things that stood out for me about this episode is when they talk about they wouldn’t wish that experience of psychosis on anyone, but felt like it was their crisis that they needed to start again, start afresh. And that felt so hopeful for me. Because you don’t really hear it.You always hear the negatives about psychosis, which are granted, but it’s nice to hear someone speak about it in a way that you can transform that.

RACHEL

Yeah, that’s true. I think that maybe is where this idea of self compassion came from. But I also think it makes me think about the Buddhist ideas about adversity.

[00:28:33] LUCY

Yeah. Lotus in the mud.

[00:28:37] RACHEL

But just that anyone that moves through such adversity is going to possibly come out better for it, have at least grown or developed as a person and in their relationship with themselves.

[00:28:52] LUCY

I’d love to see that more conversations like that happening, rather than, oh, you’re unwell. You just need to get better and get back to where you were, rather than, no, use this. Use this to move forward. And evolve.

[00:29:07] RACHEL

Yeah. Evolve is a good word.

[00:29:10] LUCY

Evolve. I’ve heard people in the peer movement. Instead of talking about recovery, they talk about evolving. And that really changed things for me.

[00:29:20] RACHEL

Obviously, I’ve heard about discovery instead of recovery, and I understand that, but that’s the first time I’ve heard evolve or as part of an evolution in the life of a human. I guess I’d just kind of wrap up by saying how appreciative grateful I am for this guest and how courageous I feel it is to come and share these kind of experiences with us and with the world. Really.

[00:29:46] LUCY

So brave. Because it is still so stigmatised. And to do that is so much courage. And to do it with such eloquence.

[00:29:54] RACHEL

Yeah.

[00:29:55] LUCY:

Huge shout out. To those listening to this conversation, hope you’re taking care of yourself. Hope you get as much out of this conversation as we did. Thanks for listening.

[00:30:25] Thank you for listening to our podcast. If you wanted to stay in touch or learn more about discovery college, please head to our website, discovery.college.

Sometimes as humans, we have experiences that aren’t shared or understood by others. Often these experiences can feel extreme, scary, unreal or even euphoric. Experiences like psychosis, depression, grief and addiction.

Here is a little taster of highlights from some of the conversations Lucy and Rachel have had so far with incredible humans who vulnerably share their different perspectives on these ideas.

Come and listen with:

Lucy (She/Her) – A big fan of pickleball, ice cream and storytelling

Rachel (She/Her) – Social Worker, Dialogical Practitioner and wildly passionate about transforming the culture of mental health services to be person-led and human rights informed.

Incredible artwork @sharleencu_art

EPISODE TRANSCRIPT – Extremely Human Trailer

LUCY    This podcast has conversations around different mental health experiences that may be distressing for some people. If that doesn’t feel like something you want to explore today, you might wanna visit another podcast and come back to us another time. 

RACHEL    discovery college acknowledges the traditional owners of country throughout Australia and recognises the continuing connection to lands, waters, and community. We pay our respects to Aboriginal and Torres Strait Islander cultures, and to the elders past and present. They have never ceded sovereignty.

LUCY    In this podcast, we share stories that help us learn from each other, connect us, and inspire growth. We want to acknowledge that this way of being, of coming together to share knowledge and stories is a tradition that has already existed on this land for hundreds of thousands of years as a part of the culture of First Nations people. 

RACHEL    discovery college acknowledges the views shared in these podcasts are about mental health experiences, but are not a substitute for professional mental health advice and support. The views in this podcast are not the views of Alfred Health, but are the views of the individuals we’ve had conversations with.

LUCY    The stories we share on this podcast aren’t just stories, but memories of the people who have bravely shared their experiences with us. Remember to take care of yourself as you listen, as well as to take care of the stories that you hear.

MUSIC

RACHEL  This podcast series called Extremely Human Looks at the profound experience of extreme states from both personal and outsider perspectives. When we speak about extreme states, we are exploring a more humanistic way to describe and understand people’s experiences that aren’t always shared by others.

LUCY  Through sharing stories, we strive to understand and describe the unique journeys that may feel unusual, confusing, distressing, or even wonderful for individuals. Each extreme state holds different meaning for each person, including those related to psychosis, depression, grief, and addiction. As we have conversations with a variety of people, we explore an important question, how can we respond to distress with greater compassion and humanity?

MUSIC

RACHEL  The Extremely Human Podcast came about because we started to realize there were many untold stories about extreme states that needed to be heard about what had been helpful to people and what hadn’t.

LUCY    We discovered a theme about the importance of compassion and here are some of the snippets of what we heard.

JAMIE    The more I was able to spend time with people in extreme states, the more I realized what a naturally human experience it needs to be viewed as in order to be helpful in that space. So as a clinician, I think we spend time around people and we find ourselves wanting to find the on and off switch at times to just help, to change, to fix professionals. Um, in general, and you know, this is without judgment at all, but can see distress as a black and white state. Respond according to the book and apply the theory and the knowledge, the low and slow and the de-escalation. And sometimes de-escalation is not always the best first thing to do. If someone has an experience that needs time to expel itself, to exhaust itself or, or to simply have that distress expressed in a way that they feel they need to in the moment.  Then jumping in with de-escalation and you know, tell me how you feel and all that sort of good stuff that has its place. I think sometimes rushing to that approach can be perhaps sometimes missing the human element of, of what’s happening in front of you with someone in distress. You know, how do you be a human first and a professional when it’s required? To me, that’s the order that, um, for my own professional way of working, that to me, that’s what needs to happen is I need to be in the room as a human being with professional skills. But if my skills walk in before I do as a person, I’ve probably lost that person.

GUEST     I was hospitalized once in Indonesia and like that was a really interesting experience. ’cause I was literally put behind like rusted metal bars with like a squat toilet in the corner and like a metal bed in the side and a camera watching in the room. Sound like prison, doesn’t it? Yeah. Yeah. That was like prison. And I just think that was very reflective of like the whole idea behind mental health. Like psychiatric wards, it’s like a place to be monitored. Sometimes you can feel like you’re being incarcerated by being in hospital because you’re put on a community treatment order, which means you are like medicated, enforceable by law and you have to be treated and it can feel very restrictive and controlled and enforced, and those only exacerbate the symptoms of psychosis. It’s not the right environment for someone who’s going through something so sensitive and extreme. I think it’s really about like deepening our understanding of the human experience and like allowing the human experience to be whatever it is and not trying to suppress it into something that it’s not. 

PAUL     Yes, I think there is a problem that in our western culture, I believe that over a period of time, lots of emotional distress or mental distress has become too medicalised and it’s leads to a real narrowing and of being able to help people. And it’s also very, I think it’s part of our culture too, which is very individualistic and, and the responsibility for everything lies within the individual. Um, I think it causes heaps of problems because it’s particularly often leads to unhelpful solutions like that an expert knows best, that drugs are the way to help with these things. Only that there’s some underlying medical problem, which is usually not the case. I think things are improving to some degree. And I think the main issue is trying to involve as many people as possible in decisions like this. In the past what happened to people was a much more secret, much more things against their will without them really understanding why. Um, and also families felt very shut out of those decision-making processes because the medicalisation puts the problem in the person and the responsibility with the expert. Whereas if it’s more shared decision making with people that love the person and the person, I think that even though it doesn’t sound that different, I think it makes a big difference.

CHRISTOPHER    I think that for me, I honestly think that like in general, people can do better by being more supportive, by being more open-minded and less judgmental and more curious. Asking questions like, what are you going through? Like I’ve told my family and my friends, if I’m going through stuff to ask me like, first, are you okay? And then if it’s like, yes. And then the second question, are you stressed? If you are listening, like, and you’ve got someone that doesn’t know how to support you, maybe like asking them to ask you those questions. Like, are you okay at, are you stressed? Like, is there any way that I can support you? Do you want me to listen or do you want me to give advice? Yeah, like even that question, do you want me to listen or give advice is really powerful because sometimes you need advice and sometimes you just want someone to listen. So asking me questions about how I’m actually feeling rather than judging me and saying, oh, you seem a bit racy, you seem a bit flat. 

RACHEL    Well, you can’t be curious if you’re being judgmental. You, it’s, you know, I think dropping judgment allows curiosity.

ELSA    I think especially when working with others or talking to others. And when I think about sort of the conversations I’ve had, sometimes you think, oh, why is that person feeling so upset about that? Or like, um, expressing themselves in that way. And I think we do need to remember that there’s so much that might be different and that we are different. We, we are individuals, we will respond differently. Sometimes we, we sort of judge that response that what we experiencing, but what we haven’t understood is the meaning behind it or what’s gone on for that person. Yeah. And I think that is actually sort of quite relevant and we don’t always spend that time asking or understanding. Yeah. And, and I think if we did, then maybe we’d be just as excited or just as upset or whatever. Yeah. And I think there is something about, you know, that sort of understanding or just being with that person and connecting with that person. That’s what’s so important.

MUSIC

LUCY    Thank you for listening to our podcast. If you wanted to stay in touch or learn more about discovery college, please head to our website, discovery.college.

In this episode, we speak with Jamie, a social worker in the mental health world. Jamie shares his unique perspective on what it’s like to experience his own mental health challenges and how that’s shaped the way he now works as a clinician and a person. Jamie talks about burnout, knowing when to take a pause and drawing on our humanity when facing distress.

Come and listen with:
Lucy (She/Her) – A big fan of pickleball, ice cream and storytelling

Rachel (She/Her) – Social Worker, Dialogical Practitioner, mad footy fan and wildly passionate about transforming the culture of mental health services to be person-led and human rights informed.

Incredible artwork @sharleencu_art

EPISODE TRANSCRIPT – We’re only human

LUCY    This podcast has conversations around different mental health experiences that may be distressing for some people. If that doesn’t feel like something you want to explore today, you might wanna visit another podcast and come back to us another time. 

RACHEL    discovery college acknowledges the traditional owners of country throughout Australia and recognises the continuing connection to lands, waters, and community. We pay our respects to Aboriginal and Torres Strait Islander cultures, and to the elders past and present. They have never ceded sovereignty.

LUCY    In this podcast, we share stories that help us learn from each other, connect us, and inspire growth. We want to acknowledge that this way of being, of coming together to share knowledge and stories is a tradition that has already existed on this land for hundreds of thousands of years as a part of the culture of First Nations people. 

RACHEL    discovery college acknowledges the views shared in these podcasts are about mental health experiences, but are not a substitute for professional mental health advice and support. The views in this podcast are not the views of Alfred Health, but are the views of the individuals we’ve had conversations with.

LUCY    The stories we share on this podcast aren’t just stories, but memories of the people who have bravely shared their experiences with us. Remember to take care of yourself as you listen, as well as to take care of the stories that you hear.

MUSIC

RACHEL    Extremely human is a conversation about the profound experience of extreme states. When we speak about extreme states, we wanna explore a more humanistic way to understand people’s experiences that aren’t always shared by others. 

LUCY    Each extreme state holds different meaning for each person, including those related to psychosis, depression, grief, and addiction. As we chat with a variety of humans, we explore the important question, how can we respond to distress with greater compassion and humanity? Welcome to the first episode of the Extremely Human Podcast. My name’s Lucy.

RACHEL   and I’m Rachel. In this episode, we speak with Jamie, who’s a social worker in the mental health world. Jamie shares his unique perspective on what it’s like to experience his own mental health challenges and how that’s shaped the way he now works as a clinician and a person. Jamie talks about burnout, knowing when to take a pause, drawing on our own humanity when facing distress. Just a little shout out the guitar music that you hear throughout this episode is also by Jamie. Really hope you enjoy the episode.

MUSIC

RACHEL      Welcome, Jamie. Uh, thanks so much for joining us today.

JAMIE         Thank you for having me.

RACHEL      I wondered if you could tell us about yourself.

JAMIE    Uh, my name is Jamie and I’m a social worker. I’ve been working in the mental health sector for, um, close to 15 years, and mostly working in youth mental health for the last decade. I’m happily married, father of two, and absolutely a adore a family and love cooking, play guitar, try to surf. I’m a comic book geek, um, and proud of it, . And yeah, I’m really excited just to be here today to talk about this stuff. I think it’s a cool idea. Yeah,

RACHEL    We’re pretty happy to have you here too.

LUCY    I first wanna start by apologising for the state of my voice. I was, um, at a music festival on the weekend, and speaking of extreme states, there were many people there in an extreme state.

RACHEL    I bet there were. 

LUCY    Yeah. the good kind. So we wanted to ask everyone this question before we start the podcast. This is a bit of a warmup question, and feel free to answer it as lightly or as deeply as you choose. So the question is, can you tell us a disproportionate reaction you or someone you know has had to something?

JAMIE    I can. So I’ve got two examples that I’ll offer up. The first one is to do with my children. My son, who’s five years of age, and recently we were at a party, a family party at lunch, and he’d forgotten to bring his sonic the Hedgehog toy. He completely lost control of his emotions and had, I hate the word tantrum, but if the shoe fits, sometimes you gotta wear it. He really lost control of his sense of surroundings, of his sense of boundaries, um, of his sense of his own behavior was just completely what others might consider disproportionate to the moment and to the distress. There was a lot of crying and yelling and a lot of eye rolling from my family. And I, yeah, took Charlie out and we had to speak about it, and he drew a picture of Sonic, and then that pulled him through. But I guess that comes down to perspective about what is disproportionate. And I think the point that I see is that it’s only disproportionate to those that aren’t within the extreme state. So having a disproportionate response to an extreme state, to me, is very much a, a witnessed statement rather than a lived experience, if that makes sense.

LUCY    Absolutely. Because when you’re in it, it just feels so

JAMIE    Proportionate.

LUCY    Proportionate and appropriate. Yeah. Especially when you’re that age as well,

RACHEL    When you’re that age. Yeah. Although I can think of a few disproportionate reactions I’ve had, and I look back and they were disproportionate. Yeah,

JAMIE    Yeah. In hindsight. Yeah, absolutely.

RACHEL    Jamie, you’ve already started talking a bit about this, but what does being in an extreme state mean to you?

JAMIE    Uh, yeah, it’s a, a really big question. I think firstly, the term extreme state is quite a broad phrasing, and I think it’s a really useful umbrella phrasing because it can encapsulate any individual’s experience. So I guess my understanding of an extreme state is one in which you lose a sense of autonomy and choice the agency or control, whether that be you lose control of how reality feels that you become unfamiliar to yourself. But it could also be on the other end of the spectrum where you find yourself in an extreme state of bliss or, um, happiness. Perhaps. A good example could be when someone’s under the influence of, of drugs and or they’re experiencing an episode of mania where their mood is so elevated and their energy becomes out, out of their control. Extreme states don’t have to necessarily mean a distressed state or a happy state. It’s a state of unfamiliarity. That’s the way I sort of look at it, that you feel unfamiliar with yourself in the moment.

LUCY    I feel like extreme state might have some negative connotations or people kind of like, it might be some fear around that, but just as you violated, people can have the opposite experience where it’s just pure bliss or you just feel maybe so outside of yourself, but in a really like, liberating way.

JAMIE    It’s, yeah, it can be such a freeing experience. And, you know, coming from both a lived experience and a mental health professional perspective, sometimes, sometimes an extreme depressive state can be the most familiar and comfortable thing in the world, even though you don’t necessarily have the agency to pull yourself out unsupported, sometimes it’s not always completely unwanted. And same with, uh, if someone’s in an elevated or manic state, a lot of people we hear say, you know, I, I don’t want to lose this high. It feels wonderful, but the consequential sort of behavior that can occur in those extreme states can be challenging for other people around them and risky for themselves as well. And I think that not all extreme states involve risk, but they certainly can. And that’s part of what makes it fascinating as a clinician to talk about this stuff. And also from a lived experience perspective of experiencing extreme states. And I think as, as Rachel was saying, we’ve all been there to some degree or another, so to explore this sort of content, it’s just well overdue and it’s lovely to talk about. Mm-hmm. It really is.

LUCY    Have you ever like, found yourself in a extreme state? Is there a particular point of your life or being with someone else in their life that comes to mind when we’re talking about these? 

JAMIE       Yeah, there’s lots of examples that I could offer. I guess from, from a professional perspective, I think we find ourselves in what could potentially become extreme states. And certainly earlier on in, in my career, I found myself in extreme states of panic and anxiety in the space of not knowing how to respond to someone who themselves is in an extreme state of distress or, um, or an extreme state of, you know, elevated happiness and mood and, and even mania. The more I was able to spend time with people in extreme states, the more I realized what a naturally human experience it needs to be viewed as in, in order to be helpful in that space. So as a clinician, I think we spend time around people and we find ourselves wanting to find the on and off switch at times to just help to change, to fix.  That can be a risky place to be because that’s potentially where burnout can live for clinicians. But there’s also been times where, you know, unfortunately, and not, this is not just mental health, but in the helping professions in general, you find yourself working with people who are feeling threatened and therefore do become aggressive. And that puts us in an extreme state of, of hyper vigilance sometimes. And learning how to live and be thorough and humanistic and ethical and supportive while holding yourself in that extreme state is something that I think really comes with time or time plus lived experience. So I think from, from that clinical perspective to, uh, some personal experiences, I’ve had a history, um, long ago where I was deep in addiction with drugs and alcohol and knew that there was going to be a breaking point for me. And I was lost in an extreme state of panic and remorse and guilt and unhappiness. 

The only thing I could do to take myself out of that extreme state, I knew that I had to get help, but I didn’t know how to. So in my extreme state of not really being in control, of making what some would say good choices or smart choices, I called up my boss without putting much thought into it and said, I’m an addict and I’ve gotta go to rehab. Because if I didn’t make a choice that was unstoppable, then I would never stop. So I had to put something in my way, something radical, in order for me to demand change of myself, put it out of my control, I’d already lost control in that state. I guess it was almost handing over control to someone else out of desperation. And that set forth a chain of events that pulled me out of that extreme state of, of not living, of just trying to be around, but not really enjoy my existence. 

And I was lucky enough that the boss that I called up and spoke to was turned out to be a recovering addict himself, and sent my six-month renewal contract to the rehab center, which was one of the purest forms of empathy I’ve ever experienced in my life. And one of the most inspiring things as well, because for someone of in such authority to show such grace and, and empathy helped me realize that my experience that I’d put myself in through different circumstances wasn’t unique. And it wasn’t to be demonised, it was to be worked with, and it was something that I could return from. Being in the, in the thick of an addictive life, I would say is one of the most intense extreme states I’ve ever lived in, because it went for a long time. I went from about six to eight months of never being who I was and not wanting to be that person either. 

LUCY    Do you think he would’ve ever asked for help if you hadn’t have hit rock bottom?

JAMIE    Uh, no. No, I don’t. I, I think I couldn’t ask for help. So I tried to hit the self-destruct button because I think at the core of my mind, calling my boss up to say that was going to wreck my life. And I was just so lucky that it didn’t, and it steered me to a course of recovery. But since then, when I’ve found myself struggling with my own emotional, spiritual mental health, I’m much more confident now to say, I do need some help here.

LUCY    Does that give you some faith when you work with young people that you may have seen hit rock bottom, that sometimes it can be a bit of a transformational place for people?

JAMIE    Oh yeah. Yeah. I mean, it, it, it’s never nice to see someone hit rock bottom, but having the, the privilege to be the person at the bottom of the well waiting, there’s something that’s what, you know, keeps me going in, in the kind of work that we do, is wanting to be that person that has non-judgmental arms that will catch someone hopefully, or at least lift them up. And I find that some of the most inspirational conversations that I have with young people and hear the most inspiring responses and input from them is when they’re at rock bottom, because there’s nothing left to lose, but the truth, you know, it’s all they’ve got left.

RACHEL     I was gonna ask, Jamie, you’ve sort of answered it, but how do you think that experience translates into how you are as a clinician?

JAMIE    There’s not much that walks through the front door of, of a health service or a mental health service that I can’t relate to in some form. I can’t pretend that I know what people are going through, but I’ve walked my own miles and I take the memory of, of the struggle of, of those miles that I’ve walked with me wherever I go, not as a weight on my shoulder, but as a reminder that hard times, as naff as it sounds, is like sands through the hourglass. They do pass if, if you can sit with them and understand and recognize them for what they are, which are moments and experiences that don’t define an individual for who they are, but rather it’s defining of the moment that a person’s experiencing. Simply never defining someone by their current behavior or situation is probably one of the most helpful things that I’ve ever experienced. And that’s what I try to hold in my own practice, is if someone is in an extreme state, well that’s probably a symptom or an effect of unfortunate circumstances. It’s rarely a choice that they’re making to act out in a way that is uneasy or offensive for others.

GUITAR MUSIC

RACHEL    So Jamie, I’m just trying to think a bit more about what happens when someone’s in, in a heightened state of distress or an extreme state of distress. Mm-hmm. , you know, what do you think happens for those around the person or those that are called to help?

JAMIE    Yeah. I, I think a, a sense of professional purpose and maybe a little bit of a heightened sense of urgency to be responsive and to do the things that we’re trained to do. Sometimes there can be perhaps more of an application of theory rather than applying their knowledge to the moment in front of them. Mm-hmm. , I, I think sometimes professionals, um, in general, and, you know, this is without judgment at all, but can see distress as a black and white state. Mm-hmm. , and, and if it’s in this extreme distressed state, respond according to the book and apply the theory and the knowledge, the low and slow and the de-escalation. And sometimes de-escalation is not always the best first thing to do. Mm-hmm. , if someone has an experience that needs time to expel itself, to exhaust itself, or, or to simply have that distress expressed in a way that they feel they need to in the moment then jumping in with de-escalation and, you know, tell me how you feel and all that sort of good stuff that has its place. I think sometimes rushing to that approach can be perhaps sometimes missing the human element of, of what’s happening in front of you with someone in distress. You know, sometimes we need to sort of try to read the room more and, and listen to what’s going on and have a look around at what’s happening and perhaps what’s not happening as well. Mm-hmm. , you know, um, I think sometimes we can under think how we treat distress by going to our toolkit. Mm-hmm. , maybe it’s not time to bring out the toolkit, so

RACHEL    Mm-hmm. , what would we do instead?

JAMIE    Have a bit of a self-scan to think, okay, I have a responsibility in this moment. How am I doing in this moment before I try to put myself into someone else’s situation, checking myself? Am I the right person at this moment to be getting involved in lessening someone’s distress if I myself are not in a state to deal with that? And that happens when you wake up before you go to work. Ideally, it should happen on the reg with your colleagues as well, to be checking in and saying, well, today you are on, on blue dot or Code gray, or whatever the emergency response role is called in your service to say, today’s probably not a good day for me to be holding it ’cause I got a shit sleep. Or I’m, I’m just, I’m feeling a little bit outside of my own skin today.

So, you know, let’s not put me in that situation. I, I think if you find yourself in that situation, hopefully you’ve been trained really well enough to manage your own triggers as well, because they can be quite triggering moments. So I think that comes down to having a real sort of awareness of, of what you bring to a situation like that and what training do you require to be able to separate your own noise from what’s happening in front of you. And I think there’s a real skill that can be glossed over in, in the professional world that it’s okay, do some management of clinical aggression training or, you know, understand how to hit the duress button and make yourself safe. They’re good safety measures and necessary, but how do you be a human first and a professional when it’s required? To me, that’s the order that, um, for my own professional way of working, that to me, that’s what needs to happen, is I need to be in the room as a human being with professional skills. 

But if my skills walk in before I do as a person, I’ve probably lost that person. When someone comes in in distress and they get someone who’s feeling overtired over-caffeinated stressed, that they’re bringing their own anxieties into the room, is that the best we can do for that young person who’s in distress? Probably not. And I think it’s our duty as a sector to make sure that the people we’re putting in those positions are the most respectful that we have to offer. Once again, as a profession, supporting honesty and humility and the bravery it takes to tap out sometimes is so important. 

RACHEL    Gosh, I really like the idea of bringing the human self before the skills into our response, but I’m kind of interested, Jamie. ’cause that requires a lot of clinicians, doesn’t it? Um, and you’re sort of talking about having a self-awareness of the response that we’re giving. Mm-hmm. What do workplaces like mental health services or teams need to do for each other to help us be able to operate like that?

JAMIE    I mean, there needs to be a round table of like-minded individuals in a team to create a culture that’s supportive and welcoming and understanding of the fact that we’re all fragile. You know, we’re all not promised tomorrow, so how can we just be there for each other and not, I mean, it sounds like a, it does sound like a freaking t-shirt, but, you know, I’d, I’d wear it . It’s, you know, it’s gotta be there.

RACHEL   It’s, you know, I had this, I had this thought of, you know, that saying we’re only human. Mm-hmm. , I’ve never liked that before. ’cause I thought it was sort of not capturing what I think it should, but it suddenly makes sense to me. We’re only human, but it’s, it’s actually very important to be only human. 

JAMIE    Yeah. I mean, we, none of us are permanent, that’s for sure. Yeah. So yeah, I think acknowledging that and really encouraging that, um, that vulnerability is one of the strongest things we can do. You know, that’s what we ask the young people we work with to do, isn’t it Just, if you can be vulnerable with me and give me your whole truth mm-hmm. , that’s gonna give us the best place to start from. And if as workers, if we’re not doing that, then you know, have a day off , stay at home and look after yourself.

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RACHEL    How would you like to see the way in which we sit with distress change in the future?

JAMIE    Look, I, for me, there’s something that needs to happen from kindergarten, from primary school, and I think it’s happening more, is recognising that mental ill health doesn’t discriminate regardless of who, where, or how you are in the world. And raising kids all the way up into adulthood through youth. All of the good stuff to be just as free to talk about an ingrown toenail as they are about anxiety or depression. It should be as common as biology and reproduction and maths because they’re all things that just exist. Because they exist. It shouldn’t be a niche sector. Um, and I think we’re coming out of that gradually, but I think that if we can approach people who are in extreme states, whether that be distress or otherwise, if it’s done with a lens of compassion that’s genuine, that you want to be there for people, it’s pretty hard to go wrong. I, I think that if we can be aware enough of who we are in the room and try to have a greater awareness of who we’re trying to help, rather than what their symptoms or behavior are saying, that will put everyone in a better position to manage that extreme state in a more respectful way. So, you know, peace, love, compassion and mung beans, .

LUCY    It always comes back to the simple advice. It does. All we need is love. 

JAMIE    That’s right.

RACHEL    Jamie. Um, I’m interested, you know, we’ve talked a lot about what it’s like to be with someone who’s in a distress state or an extreme state. Have you seen it done well?

JAMIE    Yeah. I, I think that I’ve been lucky enough to be a part of one version of managing distress that worked really well. I was working at a music festival when I was working for a mental health service and we were running a booth. There was a young person who came to the booth in an extreme state of panic. And the extreme states in this example, sort of multilayered this young man came in and he was white as a ghost and didn’t know what to do. And he wasn’t substance affected or anything like that. He was just having a real dissociative, disorienting experience. And it was completely extreme for him. And the people around him, his friends totally loving and respectful and beautiful. People didn’t know what to do to help him. And of course, in the booth there was many clinicians who each wanted to help.

And there was some sort of experiences of how do we do the best thing that we can? And there was an immediacy to some of the clinician’s responses, including, and the friend’s responses. And I myself live with anxiety and have done since I was a child. And when I looked at this guy, it took me back to a lot of the times in my youth and childhood and even young adulthood when I’d experienced those. I’m not inside my own mind. I’ve lost control of my functional capacity. And I remember the things that used to help me through that, which was basically someone being there. So, I politely got my way through the crowd of people that were trying to offer this guy support and just said, if, you know, if everyone could please just give us some space. And I introduced myself to him and he was scared, you know, of, of his own state of mind, and therefore anyone around him wasn’t making sense. 

And I said, can we just sit down on the floor together? He was, um, he was like, oh, okay. Is that what I should do? And I was like, well, it’s something we can do and I’d like to, so let’s just do that. And then I just looked at him and said, I’m not gonna talk to you about this. I’m just gonna hold your hand if that’s okay with you. I’m gonna put my hand out and if you’re comfortable to embrace my hand with yours, let’s just do that and be here in this moment together. So we did that and a couple of the clinicians gave me sideways glances as if, oh, what, what are you doing there? And some of the friends looked at me and kind of gave me this comforting nod, like, oh shit, of course. And over the course of about five or 10 minutes sitting literally just holding this guy’s hands in silence, he eventually came back to himself out of this extreme state of confusion and panic and, you know, we had a little man moment and he, he had a bit of a tear up and so did I, because it was just this beautiful human experience that didn’t require clinical intervention as much as an empathetic human response. 

About half an hour later, he came back to the stall and he gave me a big high five. And he said, yeah, I’m back baby . And it was really great just to see that he felt so lost in this extreme state of not knowing, to just have a quiet moment holding hands with someone. It was a beautiful experience of watching someone go from an extreme state to an extremely happy state where he felt back in control of his own decisions and his own surroundings. 

LUCY    That’s epic . I think that’s a good, um, way to wrap up. Thank you so much for being our Guinea pig. You’ve been so generous in your sharing and just wanna thank you. It’s been an incredible conversation. So thank you, Jamie.

JAMIE    No, thank thanks to both you. It’s been an absolute privilege and yeah, I think what you’re doing is really cool. So thank you for letting me be a part of it.

LUCY    Thanks, Jamie. You well, I think that was a great way to kick off the first episode of the podcast. Mm-hmm. , Jamie is such a legend.

RACHEL    Total legend.

LUCY    His voice is just so smooth, isn’t it? Yeah. It’s like a radio presenter, .

RACHEL    It’s calming.

LUCY    He’s made for this. I’ve listened to this episode so many times. I never get sick of the story that he tells at the end about holding the young person’s hand and just that simple, simple gesture.

RACHEL    Mm-hmm.  Beautiful.

LUCY    It’s beautiful.

RACHEL    Yeah. You know what I really love about this episode is that Jamie’s really able to help us think about professionals as human. Mm-hmm. , you know, sometimes extremely human actually. Um, but you know, there’s lots of reluctance over a long time for professionals to bring their real selves to their work and bring their humanity and, you know, speak and acknowledge their own lived experience of distress. And Jamie does that so well and in such an inspiring way. And there needs to be more of it, I say.

LUCY    Yeah, I totally agree.

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