All in the Mind Radio National ABC Sunday 14 October 2018 5:05PM
When you’re overwhelmed by distressing feelings and big emotions, it can feel lonely, particularly if you can’t find the help you need in the mental health system. Alternative grassroots approaches to staying alive are now being explored, which focus on connecting with others in a similar space. From alternatives to suicide groups, to the Big Feels Club — peer support can be transforming.
“The very simple act of communing and connecting with other people who go there can create this profound shift in how you see yourself. And what I say is peer support isn’t really a health service at all. We sit in the mental health sector but what we are working on isn’t health, it’s identity. If you see yourself and your big feelings as a problem to be fixed, it’s really hard to see yourself as more than just a set of symptoms. If instead you see yourself as someone who is having some of the tougher parts of human experience and you can see others around you who have gone through the same thing, your sense of self shifts.”
Honor Eastly: I cry so much that I spent two years collecting all of my tears. A lot of people are like, that doesn’t make sense, how did you do that? Picture me with a Tupperware container under my eyes. I had no idea whether I was a person who cried a lot, and the only way of knowing would be to kind of get some data around it.
Graham Panther: You knew you cried regularly, but you didn’t know what a lot was, as in how much do other people cry?
Honor Eastly: Yes, I had no idea. Crying is usually a really private thing.
Graham Panther: That’s right, people don’t usually show their collection of tears, they usually just keep it in their cupboard.
Honor Eastly: How many times have I cried today already? I think I cried like three times.
Graham Panther: Just in the editing break between recording the bits of this podcast.
Honor Eastly: That is true, yes!
Lynne Malcolm: Honor Eastly and Graham Panther in their podcast called The Big Feels Club.
Hi, it’s All in the Mind on RN, I’m Lynne Malcolm. Today, ways to live when it seems life is not worth living. Connections, alternatives and procrastinations in the face of your darkest thoughts.
Graham Panther is a mental health advocate and consultant and came to this work after his own experience of mental illness. He had a breakdown in his early 20s and he felt he lost touch with reality. He had intense anxiety and feelings of terror, which prevented him from getting on with his life.
Graham Panther: The biggest thing that I was searching for in that time in my life was an answer, some kind of fix. You know, why is this happening to me and what am I supposed to do? I had a fairly unsatisfying experience of trying to find that answer through the usual channels. So I did the normal thing, I went and saw the psychiatrist, the neurologist, the psychologist. I tried all the pills, I tried the treatments, none of them really changed what was happening for me, none of them made a dent in that feeling that life wasn’t worth living anymore.
Lynne Malcolm: What are some of the mistakes or the problems that you encountered when you really needed help and tried to access help, as you described? What were some of the things that just didn’t work for you?
Graham Panther: I think there is this assumption that the only valuable way to talk about big scary feelings is if you have an answer or a fix. We see this in the mental health awareness campaigns. The mantra of these campaigns is ‘just ask for help’. When you’re on the inside of that scary experience, when you’re going to those darker parts of your mind, you know that it’s not that simple. And the second thing is we say there is no shame, there’s no stigma, but if you’re in that space…I can speak for myself. When I’m in that space where I feel life is really not worth living, I talk about it as like being deep in my shame cave. There is nothing but shame in there. And so you saying there is no shame doesn’t really change that.
Lynne Malcolm: So what is it that people really need to when they are doing it tough like that?
Graham Panther: I can only speak to what changed my life, which is finding my tribe. The thing that made me feel better was finding other people asking the same big gooey questions, finding other people who wondered what the point of living was sometimes, and finding spaces where if there’s enough of us there, hey, maybe that’s actually okay, maybe that’s part of the human experience, to wonder what the point of life is. You know what it is? It’s feeling like you belong on Earth, even when you feel awful. When you find other people who go through it, it’s like realising you do belong on Earth once more.
Lynne Malcolm: Graham Panther has also been confronted with supporting a loved one through her deep mental distress. He’d been dating his girlfriend Honor for about six months and the relationship was going quite well. But then things changed.
Graham Panther: She stopped me from going to work one day and said, ‘I don’t think I can be alone.’ And all of a sudden our relationship looked really different. I had this wonderful amazing person in my life but I was afraid to leave her alone and she was afraid to be alone. We knew that going back to the usual specialists could leave you walking away feeling more hopeless and more broken than when you started, and so there was this feeling of, well, what the hell do we do now?
Lynne Malcolm: And so what have you done?
Graham Panther: When you’re feeling this way or when someone you love this feeling this way, you can’t go on as if everything is normal, when you are making plans every night for making sure that the person you love is only alone when they feel safe to be alone. It’s a strange and extraordinary time. But there is something extremely tender and profound about going through that with someone. We had only been dating six months, and yet here we were in this extremely gooey, tender, honest space with each other.
The two things that I felt I could help with, one was I did have certain people around me that I call my tribe, the people in my life who have been to this space themselves and who really get it. And so I rallied them around us and so did she, her people in her life, and we really just leant on them. And so that was helpful.
But I think the biggest thing I could offer was presence. And some of the most nourishing conversations we’d have were ones where I would simply say, ‘Yes, you’re kind of screwed right now, this is a really hard space to be in.’ And that honesty and that presence, even if it’s 3am in the morning and she has woken me up to say ‘I am freaking out’, that’s the thing I could offer.
The flip side of that is that it’s hard to stay in that space, and when it goes on for a few months it’s exhausting, and it really is human nature I think to creep into; well, what are we going to do differently, what are we going to do to stop this, to fix this? And I had a conversation with a mate who I basically just went ‘blargh’ and told them all the things that were happening and he said to me, ‘Gosh, it really sounds like you feel responsible for her staying alive.’ And that’s exactly what was happening in my head. It wasn’t that she was asking me to do that and it wasn’t that I could do that because I genuinely believe we cannot be responsible for other people’s life. But what I could do and this was a reminder for both myself and for her, was to try and stay present and just be with whatever was happening right now.
Lynne Malcolm: More from Graeme Panther later.
This song is by Gareth Edwards. He’s a writer, entertainer and healer, and the director of a company called Positive Thinking. When he was younger, he went through a very dark time with his mental health.
Gareth Edwards: Sort of towards 24 I started to get some really deep lows and anxiety and panic, and I ended up being put on Prozac. I never really got given the label ‘depression’, so I took the Prozac for a few moments, and then what that seemed to bring about was a lift in the mood but then the mood kept getting higher and higher and higher, and I ended up becoming quite manic is the phrase from the mental health system, and I got quite high and excitable, and I ended up homeless and being arrested and hospitalised and spent just around about three or four months in the psychiatric wards.
Lynne Malcolm: And can I ask you, when you were in quite a bit of mental distress in your 20s, did you have suicidal thoughts?
Gareth Edwards: Yes, very much so. And in fact one of the interesting things is it was only when I’d got to my mid 20s and things became dysfunctional, so I wasn’t able to work and I was even struggling to have relationships, even talk with people, it’s then that I looked back and saw maybe a decade of ebbs and flows. And certainly within those ebbs and flows there have been moments of real darkness, real existential angst and definitely suicidal thinking and behaviours.
Lynne Malcolm: And what do you think you needed then when you were thinking about suicide?
Gareth Edwards: I think at the absolute moments of it, for me it was always can I get through a particular state of being and allow that to pass? And that’s certainly something that I’ve gone on to work with the book, with The Procrastinator’s Guide, is how do you navigate that very difficult few moments or few hours where the urge to kill yourself is very strong. And I think I’ve learned a lot of techniques and developed some of my own to just sit with that and be with that because knowing that that will pass and then there’s an opportunity once that passes.
Lynne Malcolm: Drawing on his personal struggles and his own suicidal feelings, Gareth Edwards has recently published a book called The Procrastinator’s Guide to Killing Yourself; Living when Life Feels Unliveable.
Gareth Edwards: I wanted to share something of the journey I’d been on and some of the things I’d discovered. I wanted to write the kind of book that I wanted to read at the time because I think there is a very common message that if you’re feeling suicidal, talk to somebody, and I certainly did plenty of that and I think it’s really good advice. But then there’s another layer after that that I experienced and others do too, is that what if you can’t talk to someone or you don’t want to, or if you’ve already talked to somebody but you want a little bit more. And then for me the real crunch question is what is it that we are actually talking about?
And so I wanted to write a book that would just sit in that space for people who just wanted something extra. I know that I wanted extra. I certainly rang helplines and engaged with councillors and doctors and to some degree I think that they all contributed, but I also think there’s something in that urge to kill ourselves that goes beyond mental health. It’s a real cornerstone of humanity.
For some of us we can just patch ourselves up and get on and that’s great. I kind of almost envy those people. But for a lot of us we go back and back to the same place, so I wanted to offer something for people who had maybe been around the circle a few times and were really wanting to say, okay, so what is this, why do I keep coming back to this place, what can you tell me about who I am and what can it also tell me about maybe what I want in my life?
Lynne Malcolm: So what’s the element of procrastination in it?
Gareth Edwards: Yes, so the procrastinating, that was the technique. So I talked about navigating through those difficult minutes or hours or even days sometimes, and what I found was there was an element of denial, I think particularly when you first encounter these extreme human experiences like suicidal thinking or paranoia or a whole vast range of things that we call symptoms, there’s an element of denial and you want to fight yourself and say this isn’t happening to me, I’m not going crazy, I don’t want to be like this, this is awful. And I think what I discovered, certainly in the most strongest times of want to kill myself is that as soon as I let go of the fight and accepted that in that moment that was my desire, to kill myself, then there was a space. And to create that space I would say, well okay, Gareth, you want to kill yourself, let’s just do it later. Let’s put off until tomorrow what you could do today. So I wasn’t denying that I wanted to kill myself, I was just making it clear that it wasn’t going to happen this moment, I’ll do it another time, and you create a little bit of time and space where you’d say, okay, if I’m not doing it now, what else can I do?
Lynne Malcolm: So what do you learn about yourself in that space?
Gareth Edwards: That’s a really good question. I think for me the urge to kill yourself, for me anyway and for others that I’ve spoken with, it’s often more about wanting to live. It’s not so much about wanting to die, it’s about wanting to live but feeling like it’s impossible to live the way you want to live. So in that space you get to look at, well, what is it, this almost impossible dream of a life, what does it actually boil down to? And I think in there are some really beautiful practical and philosophical ideas and suggestions that you can then work with. So, for example, in the book I talk about the time of my life when I was in my mid 20s and I was a student, and I realised that there was a lot going on in my life that I wanted to change. I’d been a student for many years so I was in quite a lot of debt and I was kind of drifting through university rather than being focused. I was doing a PhD, so it was quite solitary. So you start looking at those things, you say, well, what I actually want is a more connected, more vibrant, more abundant life. And I think therein lies the path forward. So once you know roughly perhaps what you’d like to see in your life instead of accepting where you are in the situation that you’re in and finding really gentle and nourishing ways to inch forward.
Lynne Malcolm: After 20 years working in the mental health system, Gareth Edwards now directs the New Zealand-based company Positive Thinking. He believes connecting people with similar experiences is key to healing mental ill-health.
Gareth Edwards: So over the years I’ve got involved in developing peer support services, looking at online self-directed self-help, and also I think one of the things that I think will really transform where we are, and it’s a slow boil, is to stop seeing this as a purely health issue and start seeing it as a social rights, a civil rights issue. And I’ve certainly done some work in human rights around that side of things. And what I really love about that, and I often say somewhat flippantly; I don’t really care how well you are, but even if you’re really sick, if that’s the terminology we are using, even if you’re really sick, you should still have a full and meaningful role in the society in which you live, and that kind of flips everything because then it’s not about making people well, it’s about making people included.
Lynne Malcolm: Gareth Edwards.
You’re with All in the Mind on RN, I’m Lynne Malcolm. Today, some alternative approaches to dealing with distressing and overwhelming feelings. Sometimes what can make a real difference is simply talking and sharing those feelings with others who have been to those dark places themselves. Caroline Mazel-Carlton has worked in mental health care for a decade. She is now director of training for Western Massachusetts Recovery Learning Community. She went through considerable emotional distress when she was a child. I spoke with her on Skype.
Caroline Mazel-Carlton: As a kid I had experienced trauma. I’d experienced some pretty intense abuse at a day-care centre at which I lived. And for me it made the world feel like it was kind of a scary place. I didn’t know how to keep myself from being hurt and other kids from getting hurt. And then when I was eight years old was the time that the first American Gulf War started. And all of a sudden on our TV screens we would see things like bombs exploding over Baghdad and we would hear about this war going on. And for me at that time, all of those things piling up on top of each other just sort of broke me.
Lynne Malcolm: Caroline first saw a psychiatrist at the age of eight and remained in the mental healthcare system so many years.
Caroline Mazel-Carlton: Some of my first thoughts of suicide came around that time because I felt so trapped because my problems were being defined in this particular way, but the solutions being offered to me didn’t work. And so that’s when I began to think, hey, maybe I should take a whole bunch of these pills that I’ve been given and just check out of this world completely because it doesn’t seem like there’s any other options.
Lynne Malcolm: Caroline had spent long stretches in psychiatric hospitals and was prescribed a range of medications. But what got her out of the hole she felt she was in was quite unexpected.
Caroline Mazel-Carlton: I was about 26 years old, I was living in a halfway house and it was at that time that someone actually took me to my first roller derby game. Roller derby is a sport where it’s a contact sport, it’s played on roller skates, and what was extraordinary about it to me in that moment, seeing that first game, was a lot of the women that played the sport seemed to be having big emotions. They were assertive, sometimes they were expressing anger, a lot of the things that I had been told, you know, you have a personality disorder, you’re borderline. But these women were expressing their strength and really being applauded for it. And so I was drawn to it and I started to play the sport. And as a result I kind of found actual community for the first time. It taught me a lot about distress tolerance, it taught me how to work on a team, it taught me that there wasn’t any shame in being knocked down in life, it’s about can you get back up, can you take the hand of your teammate and get back in the game. It was in community with other people separate from the mental health system that really helped me heal and move forward.
Lynne Malcolm: This sense of community was so helpful for Caroline that she decided to set up meetings which offer community and connection to others in mental distress. They are called alternatives to suicide groups. The participants are encouraged to interact and share their disturbing thoughts and emotions with others. The group is facilitated but there’s no clinician present.
Caroline Mazel-Carlton: I remember one group, there was a woman who had been coming for months and she was really struggling with thoughts of ending her life. And I remember her coming that night and saying, you know, ‘I’ve tried this medication, it doesn’t work, I’ve tried that medication it doesn’t work. I want to try ECT, I want to try TMS, I want to try these different things.’ And I remember someone saying to her in the group, you know, validating her experience and saying, ‘Man, that sounds so hard, to have tried all those things and had then not be effective. And I guess I just wanted to ask you because I’m curious, how would you know if they were working? How do you want to feel?’ And the woman paused for a moment and had to really think about it because honestly I don’t think she had ever been asked that by anyone before. And I remember her saying, you know, ‘How I want to feel is I want to feel like I can walk into a room and that people will accept me there. I want to feel like I belong.’ That important exchange likely would not have happened in a group where there is no interaction.
In our groups, a big piece of it is not making assumptions, meeting each other with curiosity. And so we can totally ask more about our experience. And I think that’s super important because I once had a woman come to group, she had tried to kill herself three times and been hospitalised all three times that month. And what she said was, ‘You know, I’ve come to this group once and this is the first time that anyone has asked me why I tried to kill myself.’ So all those times spent on the unit, no one had asked her why she had wanted to leave this world. So, certainly yes, the connections that can develop because we all are openly identifying with these experiences are so important.
We’ve also developed trainings out of these groups that can be taken by non-facilitators like clinicians, family members, clergy, and that piece of curiosity is one that almost anyone can bring into their interactions in their lives.
Lynne Malcolm: Are there times though where somebody might be very close to taking their own life? What can the group do in that potentially risky situation?
Caroline Mazel-Carlton: Yes, some people say that, but I think a lot of people have been very close, and I don’t think there’s really a better place for them to be in that moment than in a community of people who are deeply listening. What I’ve noticed, because I’ve worked in the mental health system for a decade and I’ve been facilitating these groups for six years, and what I have noticed is that people who make a practice of expressing thoughts of suicide, doing it in community, letting the thoughts out, expressing them, are not people who end up dying by suicide. So there is a lot of folks that come to group, and it is the worst day of their life, but if they are really given the opportunity to talk about it and have that pain become more shared communally and collectively, I have seen people move through these really, really tough states.
In all those years, shockingly I can really only think of two people who have attended these groups that I am aware of that have died by suicide. So it’s like shockingly low numbers, considering what I saw when I worked more in the conventional mental health system where suicide was almost a weekly or monthly tragic reality. And we don’t really set out to be, like, I’m going to save everyone’s life. I think people save their own lives but I’ve seen these communities really sustain people and keep people going through some really tough chapters of their life.
Lynne Malcolm: Caroline Mazel-Carlton. Alternatives to suicide groups have been going for a decade. There are dozens of groups in the United States, one in Canada and one in Perth in Australia.
Graham Panther: I am an evangelist for peer support, unapologetically.
Lynne Malcolm: Graham Panther is a mental health consultant, and it’s his music your hearing.
Graham Panther: In terms of the evidence base for peer support, we are starting to get a strong evidence base. Every single time I do an evaluation of a peer service people tell me these stories of not just feeling a bit better but of life transformation. The thing about peer support right now is it’s usually the last thing you can get. So you first have to go through all the other more traditional forms of support, you have to see the psychiatrist and get a diagnosis, you have to potentially see a nurse and a psychologist, and then the last thing we offer is peer support. The very simple act of communing and connecting with other people who go there can create this profound shift in how you see yourself. And what I say is peer support isn’t really a health service at all. We sit in the mental health sector but what we are working on isn’t health, it’s identity. If you see yourself and your big feelings as a problem to be fixed, it’s really hard to see yourself as more than just a set of symptoms. If instead you see yourself as someone who is having some of the tougher parts of human experience and you can see others around you who have gone through the same thing, your sense of self shifts.
Lynne Malcolm: Graham Panther has seen the profound benefits of peer support, both in his own experience and in supporting his partner, Honor Eastly. So he and Honor got together to create The Big Feels Club.
Graham Panther: It started with a few experiments, people coming to my house, people coming to the library and chatting. And it has grown into this community that is mostly online, so we have a couple of thousand people online growing day by day who can engage in whatever level they want. So some people just read our newsletter about feelings and that’s it. Some people email me, some people talk on our Facebook group. And if you really want to dive in we have this new thing we are trying which is our monthly book club for feelings, which isn’t really a book club at all because I don’t think we’ve read a single book yet. But basically we wanted to create a space where every month people could come together from all over the world and un-pack one particular gooey question about feelings.
And so the first one we did was; does everyone else find life this hard? Which is a question that if you’re a sensitive cat you have asked yourself many times. So we have a podcast we create, The Big Feels Club podcast where Honor and I talk about that month’s question and we get a whole bunch of our community members to call in and leave their messages about their take on that question. And then we basically just have a yarn. And most recently our newest experiment is a public monthly meet-up in Melbourne at the library where people rock up and they listen to the podcast, they have a bit of thoughts and feelings on the topic, and then we have a big yarn and share them.
Lynne Malcolm: The Big Feels Club has been going for about a year.
Graham Panther: The feedback we are getting so far is this is something new, this is something profoundly different for a lot of the people engaging with us. And it is that stuff of feeling like I’m not the only one who feels this way. But it’s also…I think of it as a different kind of hope. So a lot of the cheerleading hope that we get at the moment in the conversation around mental health is ‘it gets better, it’ll get better, just follow these steps and you’ll be okay’. Ours is a different kind of hope. I think it’s something closer to ‘just because life sucks sometimes, it doesn’t mean that you suck’. And here’s a whole lot of us who go to those same spaces and still go to those same spaces, who are also living good lives and finding our meaning and finding our bliss. So it’s kind of a ‘we are all in this together, let’s muddle through’ kind of a space. And what people tell us is that that is what they wanted, that’s what they’ve been looking for.
Lynne Malcolm: Graham Panther, co-founder with Honor Eastly of The Big Feels Club. Head to our website for details. If any of today’s episode has raised concerns for you, call Lifeline on 131114, or head to the All in the Mind website for more links for support. And you might like to check out the new ABC podcast No Feeling is Final. Graham Panther also features in this series. In fact, it’s about his girlfriend Honor, it’s her personal memoir. It’s heartbreaking, charming and at times darkly funny. It’s about identity and why we should stay alive. Just search for No Feeling is Final wherever you get your podcasts, or find it on the ABC Listen app.
Thanks to producer Olivia Willis, and sound engineer Mark Don. I’m Lynne Malcolm. Good to have your company, catch you next time.
For help in Australia
CAPS – Talk Suicide Support Service – Free telephone and face to face support 1800 008 255
Salvation Army Care Line 1300 36 36 22
Reach Out http://au.reachout.com/tough-times
Headspace Register and chat now at eheadspace, or call 1800 650 890 Headspace
Lifeline 13 11 14
Mensline Australia 1300 78 99 78 (24 hour phone counselling and referral)
Beyond Blue 1300 22 4636
Mates in Construction: 1300 642 111
QLife 1800 184 527 Phone & Chat 3.00 – 12.00 pm everyday
SANE Australia Helpline – Talk to a mental health professional (weekdays, 10am-10pm AEST) 1800 18 72 63
Helpline chat – Chat online with a mental health professional (weekdays 10am-10pm AEST)
Kids Help Line 1800 55 1800 (24 hour phone counselling)
Suicide Call Back Service 1300 659 467 (Professional call back service referral line operates seven days a week)
Veterans Line 1800 011 046 (after hours professional telephone crisis counselling for veterans and their families