1 Captions by Faith Hamblyn. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2015 INSPIRING MUSIC PIANO MUSIC There needs to be that idea that there's some light at the end of this tunnel. There are people out there who, uh... who have schizophrenia and are doing well. The reality is that, uh, the majority of people get on and get on with their lives, and just... it's just a small portion of their lives. PIANO MUSIC CONTINUES I'm at Auckland University. I work at Auckland University. I'm called a professional teaching fellow, which means that I do predominantly teaching, as opposed to teaching and research. And I would cover all areas of mental health. When I came into mental health, it wasn't by choice; it was because I was committed. So, um, my parents decided to commit me when I was young, um, because I was behaving in a way that caused them some distress. What I'm gonna start off is telling you about my own personal story of recovery. Because in mental health, it's all about listening to people and their stories. I first started hearing voices when I was about 5 or 6 years old. I was an extremely anxious child, and, um, my first voice was a maternal voice that used to come to me at night, because I was a very very poor sleeper. And she would help me go to sleep. She would say, um, you know, 'You don't need to worry. I'll look after you. There's no monsters under the bed,' all those sort of childlike things. And if I was really really upset, she used to stroke my brow, which was really comforting. So, um, of course, she was a great use to me. She's the only voice I've had my entire life. I've still got her. She's aged. She's more of my nana now. And, um, before, her role was to protect me; now I've learned to protect myself ` now she's my cheerleader. Now I'm starting to get very negative voices. And they're saying things like, 'You're dumb. < 'You're stupid. You don't belong here. People don't like you. People wanna hurt you.' Etc, etc. When you're completely overwhelmed by your emotions, it's impossible to think clearly. Very few people can think clearly. And in essence, that was what I was being asked to do, is that when I'm at the most vulnerable, let's sit down and be rational and reasonable about this. You're asking me and anybody else to do something I'm not capable of ` that's crazy-making. I believed that I was hearing voices because they were testing me to see if I was worthy of receiving this message. Now, this message was an important one. I was going to free the world of tyranny. There would be no more war, so you can see it was a very important quest. And what I had to do was put up with these very negative voices. < And by this stage, I'm hearing the voices of demons. After a while, my behaviour became even slightly more disruptive and disturbing. I, um, believed I was possessed, and I used to cut myself to try and get the demons out. < So I went to the GP, and the GP suggested that I should be, uh, committed. So this is where I moved to. And ECT was often used as a form of punishment. I was in an environment where people didn't believe me, where people thought I was nuts, and if you think about it, in a way, this is very much, if you know mythology, it's what's called the hero's journey. I spent 18 years at Kingseat. I've never been back since I left. This is it. This is the first time I've, um, even driven past the place. And it's, um... Oh God. Oh God. (WHIMPERS) You know, I can hear a hundred voices. (SNIFFLES) Oh dear. (SNIFFLES) (SIGHS) They're just telling me that I got to leave, that they're so proud of me that I got to leave. Oh God. (SIGHS) I feel a huge burden. (SNIFFLES) I have a huge responsibility to those that never got to leave here. I owe them so much. They contributed so much to my wellness. I used to say they were remnants of the divine. 'That's what you are.' And that's what they were to me. They saved me. (SOBS) And they'll never know that. So it's my job now to make sure that their voices get heard. (SNIFFLES) That's my job. You don't experience that... that kind of acceptance I've never experienced since. I owe them. There was the best people here,... the best people here, the kindest and most loving people, too sensitive for the world. (SOBS) And then they still mock. After all these years, they still mock them. (SOBS) I'm so sorry. (SOBS) (SNIFFLES) There's where we used to go to have ECT, like cows to be milked. There's no place for this kind of place any more. (SOBS) We did it, though. We did it together. We got out of here. We closed this place down. We're out there. They're still all out there. Mm. We did that. (SNIFFLES) We did that. Mm. CONTEMPLATIVE MUSIC BIRDS CHIRP I'm a chaired professor of law, psychology and psychiatry here at USC. I'm an adjunct professor of psychiatry at USD Medical School. My teaching area's mental-health law. I've come to say my mind is both my best friend and my worst enemy. When I'm working, that crazy stuff recedes to the sidelines. Hey. How you doing? We're doing good. Good. How are you? Good, good. So, Melissa, my post doc, and Chris, my programme associate. Everybody becomes psychotic in his or her own way. For me, uh, I have, uh, delusions, sometimes bizarre delusions, like that I've killed hundreds of thousands of people with my thoughts or a nuclear explosion's going off in my head. Um, I've had occasional hallucinations, visual hallucinations ` a man with a knife held over my head. Um, I don't have ongoing auditory hallucinations, which many people do. I just don't have voices. I've been fortunate in that way. I went to college at Vanderbilt, and my first year and my last year ` well, the first year, my personal hygiene was truly appalling, and my first and last years, I had out-of-control episodes, which I was able to bring to a close, but which were scary. And then I went on a Marshall Scholarship to Oxford to study ancient philosophy, and my world really started falling apart and I became officially mentally ill. And it started out looking like severe depression with mild paranoid features. And I had heard of schizophrenia. I felt like it was a sentence to a sort of bleak and painful life, um, and that, you know, I'd never be able to work and I'd never get married, and my life was gonna be a total ruin. I see things changing. Don't you? I mean, compared to, like, the time that you were in college? What really made it for me was getting on really good meds and staying on them. I mean, I went about 10 years trying to get off meds two or three times a year and undertook each effort with great gusto and failed miserably each time. Um, and, uh, my doctor finally said, you know, 'Just stay on the drugs.' And I tried one last time and was a disaster and stayed on the drugs, and now my life is so much better. My hospital experiences were so toxic that I can't ever imagine going to a hospital again of my own free will. Even though it might have benefited me at times, the trauma was just so powerful. When I was hospitalised, the first three weeks, I was restrained anywhere from five to 20 hours a day. And then I transferred to another hospital ward, and, you know, same symptoms, same feelings, same thoughts ` wasn't restrained at all. And there's a lot of evidence that whether your restraint has more to do with, kind of, the ethos of the place, what the people higher up believe and want, than anything else. And I had nightmares for years and years about restraints. And I used to have fantasies of rounding up all the doctors and nurses and putting them in restraints and locking the seclusion room and leaving. (LAUGHS) Kind of in a nutshell, I basically had a pretty painful childhood, a lot of confusion. I actually ended up in a foster home for a while. I was quite depressed, but I managed to kind of get that behind me by getting really passionate about hang-gliding. I became the instructor and got really into competition flying. I actually won the 1998, uh, aerobatic world championships in hang-gliding, and then went on to win the cross-country national championships four different times, and then two times Australian national championships. As long as I was in the sky, I was really happy. It's like all that baggage from the past, I just, kind of, left on the ground, like I had finally made it to the top. And it was, kind of, perfect. I had this belief that if I ever got to that point, I could finally live happily ever after. And I realised that I was still... inside, I was still, like, really unhappy. That was, sort of, like, the catalyst to, kind of, my own, kind of, breakdown and crisis. And at that point, it all just, kind of, came flooding out. All that stuff that I was holding on basically came out, and I had what I would call essentially a kind of a breakdown. Um, if I were to get formally diagnosed, it would definitely have been a psychotic disorder. I ended up having, uh, really confusing, kind of, wild kind of beliefs; um, what you'd kind of call paranoia; delusions of grandeur; uh, kind of a... Basically, an experience of, kind of, a good and evil, kind of, struggle within my own being, but also feeling like it was, sort of, playing out in the world in some ways. As terrified as I was of what was going on with me, I was just as afraid, if not more afraid, of getting caught in a system. And bit by bit, I worked through it. My mind was so wild, I just put everything into my body, just went running, did a lot of cycling, a lot of meditation, mindfulness meditation. And bit by bit, I was able to work through it. You know, I easily could have been diagnosed with a psychotic disorder, some, you know, serious mental disorder, and yet I really feel like I worked through it and I recovered. And then I thought, 'Gosh, 'there must be so many other people out there going through similar kinds of experiences, 'but then they end up, kind of, getting stuck.' You know, they don't quite make it all the way through. And so that's when I decided to, kind of, shift my life path and become a psychologist myself and did research on other people who had had similar kinds of experiences. They were diagnosed with schizophrenia, etc, and went on to make a full-on, lasting medication-free recoveries. Um, so that became my doctoral research. There are certain themes that seem to really support them and that process. And the first thing that everyone said was so important for them was actually hope, was actually the hope that they could actually move through this. All of my participants, since they all said they had been given a message essentially of hopelessness, they were told essentially, like, you have this lifelong disease, you're never really gonna recover, the first thing they had to do was actually say, 'You know what? I'm not gonna accept that.' And they actually had to say, you know, 'I'm gonna be able to work through this. 'I'm gonna be able to enjoy myself, enjoy my life.' I took it as, really, a sentence to a bleak and painful life, as I said, so I expected that I would be unable to live independently, I'd have to live in, like, a group home or a board and care or something like that. And then I, you know, at best, would work menial jobs when my symptoms quieted, like being a cashier or something like that. I thought my life was over. Um, and then the following year, I just went back to Yale. Once I was given, um, my diagnosis, then my life was preordained, predetermined. And I think what happens is there's the stigma that comes from health professionals and within the general public etc, that's one thing, but I think self stigma is actually much more damaging. So when I was given my diagnosis, what I told myself was that I would be looked after for the rest of my life; I would need to take medication for the rest of my life; I wouldn't have, um, people to love me. I wouldn't be in a family situation, I wouldn't have all those things, that my life now would be in the institutions. What I do recall is actually surrendering and giving in to that really really quickly. I didn't fight that for a long time. Because I think you're not only giving the messages to yourself; you're constantly getting those messages from the health professionals and other people that you work with. And it's at both a... I think, a covert level and an overt level that you get all those signals. So it just becomes part of your belief system. And it's very hard to fight against that when everything's telling that you're this. Going into a hospital is kind of admitting helplessness, admitting defeat, making a statement that you can't really take care of yourself. It shouldn't be, but it seems like a stigma to me. I think schizophrenia's still probably the most stigmatised. I mean, people of afraid of violence, but actually, the percentage of violence accounted for by people with mental illness is, like, a couple of percent. It's very small. And the percentage who get victimised is very high. So you're much likelier to be victimised than be a victimiser if you have schizophrenia. And I don't think we do well enough trying to incentivise people to really try to do well. I think too many people are saying, you know, lower your expectations. I'd go to four- to five-day-a-week psychotherapy for decades. The theories are supposed to end. Termination's part of the process. I'm a lifer. I'm not gonna try to end. Last time I tried that was a disaster. Probably, I would do OK now, but I don't wanna risk it. After I left Kingseat and Kingseat closed down, I went and lived with my parents ` didn't work out that well. Then I came to Grey Lynn, where there was a number of boarding houses for people like myself. We were totally unprepared, so I ended up moving to a more rural area. And when I went out there, things were starting to change a bit. They'd changed my medication. I couldn't read any more, and reading had been my only real respite from the voices. So I started to have some very serious doubts about if I had the capacity to continue. And I decided I was gonna take my own life. And it was at that point that I came into contact with someone, and it was then that things changed for me, just really from a single conversation. And the conversation we had was not about my voices or anything like that; it was, um, this person, he was very excited about something, and he'd come to tell someone at the house, and it was feeling that I could remember in my deep dark past that I'd had feelings like that. What the medication had done for me is I didn't feel really really bad, but I never felt good either. I never felt anything. I had, um, what I call a Tupperware life ` it's a life with all the air sucked out. So there was no variations. And he was so excited about something he was telling me about, I thought it would be really nice one more time just before I pop off to feel joy again. First, I had to believe that things could be different. And when I started to experience a difference, that's when I started to believe. Cos kind of success breeds success. So I did it, sort of, incrementally and just built up, and then I started to realise that I could have the life that I wanted. And I just had to, um, work at it. I came to NZ about two and a half years ago, and I'm working in Tauranga in private practice. And a lot of the people who have actually, you know, gone through these experiences report a very similar thing ` that there was, kind of, a healing thing that happened, and they actually came out really feeling better than prior to going in. It's like some kind of transformative thing happened to them. And there's a lot of people that for whatever reason maybe don't quite get to that point, but maybe they still continue to experience certain kinds of extreme, uh, maybe they hear voices still, or maybe certain extreme emotions or states show up now and again, but they're able to actually still live a normal and fulfilling life. And some of those people even choose to use a certain amount of medication or drugs, psychiatric drugs, as they do that; a lot of people don't. There's kind of a... I mean, there's a lot of different ways to think of recovery, but I think the most important thing is to recognise that there's definitely hope and a strong possibility of moving into a better and better life and a life that really is enjoyable and fulfilling. Um, and you don't have to... You know, it's not something that has to be a life sentence. And in fact, the majority of people don't even have to stay on the medication. This thing that we call schizophrenia is so, um, variable, there's so many variations and so many variables that actually, there's no one standardised approach. And there never should be for any sort of mental distress, as such, but particularly, I think, for that, people who are labelled with schizophrenia. So there is no typical pathway. Um, what one would hope and what I would probably see, um, on occasions ` not always ` is that people would have the opportunity to work through the particular challenges that they're facing, that they'd have an opportunity to discuss what had been going on for them and to work through with that, and then start, um, getting on with the life that they would choose, that they would choose for themselves, with support from mental health services. It's just normal people dealing with normal human emotions, probably just to experience them in a very extreme way, and there can be a variety of reasons why they're having that intense experience. But it's a very, um... It's just part of the human dilemma, really. It's just life. Unfortunately, for some people, it can be, um, a lot more difficult than it can be for others. Have a sit. Who? Me? Sit? (CHUCKLES) Relationships are important for people with schizophrenia too. And a lot of times, people have trouble with that, people with schizophrenia. They very rarely get married. So I went 18 years with a couple of dates in the middle, and I was just too tormented by internal demons. But I consider myself very fortunate that I have important people in my life. I didn't tell Will for a long time, a couple of months. And when I told him, he said, 'Oh, I sort of suspected something like that.' There is a lot of stigma, a lot of misinformation. I think people believe that people with schizophrenia can't live independently and can't work and are unlikely to get married, um, and are gonna basically sit in a day room watching a blaring TV at best; at worst, they're gonna go out and shoot up a movie theatre and kill lots of people. So there's a lot of negative stereotypes, um, and that's hard for those of us who suffer with those illnesses to think, you know, 'Oh, you know, this person's scared of me. How horrible!' When we first started dating, I mean, the first thing ` she did not tell me the first time out, 'By the way, I have schizophrenia and I was locked up for months a couple of times, 'here in the US as well as in England' ` no. I really didn't understand... in depth the terrible significance it could have. On the other hand, I told her that, well, I figured she had something interesting mental health-wise in her background, because she was just too eccentric and twitchy in many ways to be an average person. Hello, ladies. BOTH: Hello. Thank you. That's very kind of you. 'I never speak to my diagnosis at all in my private or my professional life. I would never name it. 'Um, not because I'm in denial or anything like that, 'but really because I don't agree with the diagnosis as such. 'For me, um, to categorise somebody in that way is far too limiting, and I don't just think that of myself; 'I think that across the board in terms of the way we diagnose people within mental health.' So what I experience,... I see, is, um,... a lot of distress... and a lot of anxiety and depression, etc, etc, at times, and then the consequences of those. So it's easier for me to name it that way, as emotional responses. So, um,... I would think that if I was to declare my diagnosis to people, that it would be almost impossible to cultivate relationships. And I don't know when you tell people like that. I don't know when's the appropriate time. You know? After the third coffee; the second lunch; you know, if they're shouting; if you are. I don't know what the social norms are for saying, 'Oh, by the way, did I tell you,' etc. And I've never really found it necessary. But I'm not sure by telling them a diagnosis, what that tells them. It certainly doesn't tell them anything that they really need to know about me. People have such preconceived ideas and often very antiquated. And even in mental health itself, the diagnoses are highly contentious. What is this thing that we're calling people being psychotic, etc, etc, and the social and personal and professional consequences of doing that to people. When we talk about these mental disorders, I think that hope is really important. Here's someone in a dark place, in a painful place, and there needs to be that idea that there's some light at the end of this tunnel. Even in the worst-case scenarios where people really aren't getting very good support at all, only about a quarter of the people actually stay the same or get worse. And about half or more of the people actually improve, and a good chunk of those people fully recover. So it's actually a much more hopeful message that what we've been told. I suppose life for me now is, um, I've got all the things that I never thought I'd achieve, all the things that I was told I would never have ` I managed to get married and have three children, who are all grown up now, I've got a loving relationship. We've got a lot of other sizes out the back. 'I just do ordinary things. 'I never tire of doing what most people consider mundane,... 'because I was so excluded from that life that it's just such a thrill to be able to do that. 'And even though you could get outside, I chose not to go outside, because I was too frightened, 'because I had to wait for God to ring me, cos I thought God was going to phone me. 'So I spent all my time inside. And now when I go out, you can smell the rain, you can smell the grass.' It's just overwhelming. I sat for 18 years waiting to be cured by health professionals, believing that they could cure me. And it took me 18 years to realise that they couldn't, they only person that could heal me was me, so I had to do something. And when I started being very active in my own recovery, that's when things changed. I basically think psychotic symptoms, kind of, tell the truth about your psychic reality. When I think I've killed hundreds of thousands of people, that's a kind of archaic, primitive way of saying I feel like I'm a really bad person. So yeah, I think the thoughts are meaningful. Something that's actually become a real resource for, kind of, modern Western psychological intervention is called mindfulness. Essentially, it's about cultivating an attitude of being present, being with your present experience in an open and accepting way. We don't have much control over inner experiences like feelings, sensations, thoughts. We actually have a lot less control than most of us realise. But what we do have fairly good control over, including someone in psychosis, is what we're doing with our body and where I put my attention. And then you can, kind of, extend to other things in your life, whether it's hanging out with a friend or whether you're doing some exercise, you know, being able to put your attention on what's important. And it is hard at first, especially if you're experiencing extreme states, you know, hearing loud voices or having other kinds of, you know, difficult feelings, etc. Certainly, it's hard, yet almost anyone can actually learn how to do this. I think it's helpful to recognise when someone's experiencing extreme states or psychosis or, you know, any kind of really difficult mental or emotional experience, essentially, the same resources that are good for all of us, um, apply, but they just have to be a bit more diligent. So for example, there's an acronym FREE that I think is really helpful for all of us, especially for someone going through crisis. So the F stands for food, as in, you know, making sure you eat regular and nutritious food; R is rest, so making sure you get regular, you know, and good rest; E for exercise, so regular exercise, connection with the body; and the other E is for enjoyment, so making sure, again, even if it's difficult, that you continue to do something that's enjoyable to you, and that includes connecting to other people and making sure that you don't isolate. I think we should provide people the treatment resources that will help them live full, whole and productive lives. Um,... we should educate the public about what mental illness looks like and how they can help. We should encourage people who start having symptoms to seek help, um, and for their friends to encourage them to seek help. What I have the opportunity to see is people work through their issues and go out and have the life that they choose for themselves. You know, get married; have children; have jobs; go and get the groceries. If you had have seen that person 18 months ago, you would never have considered that this is the same person that's standing in front of you now. You know, people have been written off in lots of ways by the system, but also by our community as well. And they are just getting on with their lives. There's nothing as satisfying to see people doing that. This year's ninth annual Attitude Awards will be held on December 3rd. Join us at the Viaduct Events Centre in Auckland to celebrate the achievements of NZers with disabilities. Tickets are on sale now. For more information go to... Captions by Faith Hamblyn. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2015