Another Day by Only Human Stories

Another day stories of people living with schizophrenia edited from conversations with Moya Sayer-Jones

Another day stories of people living with schizophrenia

(

Not knowing when the dawn will come, I open every door. Emily Dickinson

)

Another day stories of people living with schizophrenia

(

Not knowing when the dawn will come, I open every door. Emily Dickinson

)

Foreword

Contents

bout 250,000 Australians, at least 1%, have been diagnosed with schizophrenia at some time in their lives. Each year more are newly diagnosed with this

mysterious brain illness. The exact nature and cause of schizophrenia is unknown as yet, but what is known is the devastating impact the illness can have on the lives of people with it and on those who love and care for them. While every journey is very

Brendon, that’s just being human 5 Brendon Clarke Gerard Reed (partner)

But everyone’s a bit vulnerable 15 Elizabeth Ingram (mother)

different, each person, family, carer and friend experiences shock and stigma as they adjust to the changes in their circumstances. And choose their best way forward. We also know that personal care and support for people living with schizophrenia maximises positive outcomes on the recovery journey and minimises the impact of the illness on people’s lives. Family and friends need information and assistance too, as their lives are also affected by the changes in the needs, the thinking, and the behaviour of their loved ones. Today, schizophrenia journeys need not be walked alone.

I just saw Mum as Mum 23 Nickolas Yu (son)

I’ve kept playing gigs... 33 Beth (mother) James

You don’t look back 41 Lisa Douell

I hope these intimate stories will inform, surprise, and strengthen all who read them, and that they reassure that life with schizophrenia can be lived well. Alexandra Rivers Carer, Schizophrenia Fellowship of NSW

Acknowledgements

More information and support

Foreword

Contents

bout 250,000 Australians, at least 1%, have been diagnosed with schizophrenia at some time in their lives. Each year more are newly diagnosed with this

Brendon, that’s just being human 5 Brendon Clarke Gerard Reed (partner)

But everyone’s a bit vulnerable 15 Elizabeth Ingram (mother)

I just saw Mum as Mum 23 Nickolas Yu (son)

I’ve kept playing gigs... 33 Beth (mother) James

You don’t look back 41 Lisa Douell

Acknowledgements

More information and support

Brendon, that’s just being human. Brendon Clarke I remember being a very sensitive kid. And sad most of the time, even before I was diagnosed with schizophrenia. But I was a really good actor. People I’ve met later, who were at my school, say they had no idea what was going on. The voices started when I was in Year 9. After that, my grades went downhill pretty quickly because I couldn’t concentrate. Inside my head, all these weird things were happening, and I’d have to push it all back. The voice I heard had developed his own personality. He was a man called David, and his main goal was for me to kill myself. That’s all he wanted. So he’d just be screaming obscenities all day — there was no rest from it really. I’d get home from school, and the mask would come off, and I would just fall into a heap. I’d be in the bedroom, door closed, loud music on. Crying. My parents took me to a psychologist when I was about sixteen but that wasn’t very productive at all. I don’t think I knew why I was there, and I don’t think he knew either. He put it all down to teenage rebellion. Looking back, I probably didn’t open up to him: I certainly didn’t tell him about the voices. I hadn’t told my parents either and we’ve always been able to talk about stuff. I thought what was

happening to me was normal and that every kid at high school would go through it at some point. I took my first overdose at the end of Year 11. It was the stress of exams, I think, and the voice was getting really strong. So then it was off to hospital and a stomach pump and into psych hospital. That was the first time I actually talked about the voices to other people. When I got the diagnosis, Mum and Dad were told, ‘Don’t think about him becoming well and all that: this is just about managing the symptoms as best you can.’ I guess that was when we knew that this wasn’t a journey that had an end. I was put on one of the old anti-psychotics. It had no effect on the voices and created a lot of other problems but it could take the edge off my symptoms. Like my anxiety was always high, but it did seem to calm me down, sometimes too much, and allow me to function a little bit more normally.

(

I felt very safe and comfortable with people who had a mental illness: I didn’t have to hide things so much.

)

(

I felt very safe and comfortable with people who had a mental illness: I didn’t have to hide things so much.

)

(

I did a lot of voluntary work through that time too, maybe three days a week. That was something else Mum and Dad wanted me to do.

For the next eight or nine years, my life revolved around the hospital. So much so that I felt sort of normal there. In hospital, I was the same as everybody else. I felt very safe and comfortable with people who had a mental illness: I didn’t have to hide things so much. And I would be understood when I was unwell. Actually, the only time I would socialise was when I went into hospital. I wouldn’t go out very often when I was at home. My bedroom was my haven. That and a little shed my parents built for me up the backyard. It was my sanctuary: I could be totally away from the house, but they knew I would be okay. It got me away from smoking on their back patio. I could smoke and paint and draw there. I was all set up. I was always going to be an artist; I was keen. After I’d got sick, I applied for tertiary study. Admission was by interview — you take your folio and present your work. Mum would drive me and help me up because I was so heavily sedated and unwell. I didn’t get into Uni, but I got into a TAFE course, on special consideration. It was graphic design, I think, but even though there was a lot of support from integration aides and the tutors were certainly aware of what was going on and made allowances, I couldn’t fulfil the work requirements. Every five minutes, I’d be out for a fag and couldn’t concentrate. You know, I tried to give it my all.

)

I went back year after year for the next three years to try and complete but three months and that would be it. Three months was the longest I’d ever get. Although I stayed with the medication, most of the time I was still pretty psychotic, depressed, out of touch with reality. Delusions would take hold, and I’d be in this strange world where all the rules were different. I’d be sitting out the back with a bit of material wrapped around my head and nothing else on and I’d be beating a drum and asking Mum and Dad to put up a tepee in the backyard, so I could live in it. Those times were as hard on Mum and Dad as they were on me. They were anxious all the time, frustrated, upset. It would have been a whirlwind for them. They were getting no information, really, about what was going on for me. They’d send me off to hospital; there’d be a medication change. I’d come out, and they’d have to think about how they were going to deal with me and this new set of side effects. It was all guesswork; they had no idea if they were doing the right thing. But they were fabulous and I do attribute a lot of my recovery to them. They put strong boundaries around my behaviour, and they would stick to what they knew worked — like I had to be up at a

certain time, I had to do something with my days, I couldn’t just sit around or lie in bed. They really kept up all the going-for-walks and that sort of thing. The exercise was important (they would see a big difference in me when came back), so they pushed all that stuff, and at the time I hated it. I just wanted to stay in bed. The tiredness was a side effect, not something from the illness itself, and it just made it hard to do anything really. I did a lot of voluntary work through that time too, maybe three days a week. That was something else Mum and Dad wanted me to do. I worked in a Community Aid Abroad shop. Not far from where we were living was a sort of alternative community almost based on the Rudolph Steiner schools, and there was the Findhorn Travelling Library, which I worked in for quite a long time. I got a lot of support from the people that worked there. I mean, these were adults that were not my parents, and they were so supportive in keeping me in the job. The work was important because your self-esteem goes up when you’re doing something of value. And you’re socialising. You don’t get all those skills when you’re sitting at home all day, you know, doing nothing. Things went on like that until I was about twentyseven. I made several attempts to move out and

get some independence. I just wanted to do what other people my own age were doing. But I made really bad choices, and Mum and Dad were always hauling me out of situations. So I basically stayed at home — there were a few flings here and there but nothing lasting. I certainly didn’t feel I could enter into a relationship with someone who didn’t have a mental illness. Looking back, if I’d been able to keep my friends from high school, that would have made a difference because loneliness is a huge factor. You’re not doing anything but thinking about your illness. It also means that you don’t have any real role models to show you what other kids your age are up to. I remember I was on the bus one time, and there were some high school kids on it and I heard them whispering about me. ‘He’s been in jail…’ The classic schizophrenia cliche about who they thought I was. There was all this stuff going around about me, and that’s the story that my friends would have heard. So yeah, they were gone… My big turn around was when I went onto the medication that I’m on now. When it came out, it was being called the miracle cure almost and I was like, ‘Okay, I’ll give it a go’. So I went on that, and I remember three weeks afterwards, I’d started getting these really strange feelings, like little

(

I did a lot of voluntary work through that time too, maybe three days a week. That was something else Mum and Dad wanted me to do.

)

explosions going off in my chest and my head and I thought, ‘Oh shit, it’s another side effect.’ I went to my psychiatrist and said, ‘I’ve never felt this before so it’s got to be a side effect of the meds.’ And he said, ‘No, I think it’s happiness.’

‘Well, I’m just going to have to relearn all this stuff.’ Even to this day I still have a problem. If I’m doing a painting, I need to get my colour palette from another painting because I don’t know what goes with what.

Happiness. I couldn’t remember feeling that in my entire life. And it’s funny but then I had to learn what it was, what happiness was. And how to control it. I mean, I was so happy about being happy. I was way up here. (I almost earned myself a diagnosis of bipolar disorder!) For the first time, I could think clearly too. Mum and Dad couldn’t shut me up. I had an opinion about everything. I was suddenly talking, talking, talking. But there were difficult changes too.

So much was changing, and this was when Mum and Dad started going to the Schizophrenia Fellowship. They sort of realised they needed to come up with a new set of rules for their son who was suddenly different again. They were seeing a counsellor, and I was seeing him as well, separately. He mapped out not only what was going on now but what had been happening for the past ten years. We consider him a saint. He used to talk a lot about family dynamics and why someone would be feeling this and that — just to put it all in perspective. And he validated Mum and Dad too. He would say, ‘You’ve done a fabulous job.’ It was the first time they’d ever heard it really.

I was doing a Diploma of Visual Arts, second year — I was one of the star pupils apparently. But when I got back to the studio after hospitalisation and this new med change, I just sat there. I didn’t know how to draw a line with a pencil. Nothing. I just couldn’t. And colour! I didn’t know what colour was. It was just a huge scramble and I sat there literally for two weeks. It was all gone. My tutors were extremely frustrated. I remember my print making teacher just lost it. He said, ‘I don’t care what you do for the rest of the year, but I want you to draw that cigarette packet’. So for the next two weeks I sat there and drew that cigarette packet, and it was a shocking drawing; you know, it was terrible. Then I realised,

(

That same counsellor got me volunteering in their Break Away programme, which is like a buddy system for people wanting more socialisation, and that’s when I heard about a job going in a respite house. So I went into the interview — nervous as all buggery — but I got the job. I was thirty, and life was starting again. It starts just where you left off. I suddenly realised how much I’d lost, even things like social skills and etiquette. All of a sudden I had to really learn what was going on around me and be in a professional role. It took quite a lot of

Happiness. I couldn’t remember feeling that in my entire life. And it’s funny but then I had to learn what it was, what happiness was.

)

(

Happiness. I couldn’t remember feeling that in my entire life. And it’s funny but then I had to learn what it was, what happiness was.

)

(

I’ve made a decision that I won’t purposely think about my illness on a day to day basis because I don’t want it to direct my life too much.

effort to really get on top of things and learn how it all works and stuff. My employer was fabulous. I disclosed that I had an illness and that wasn’t a problem at all. It’s a big ten bedroom house, and we have people come and stay with us Monday to Friday. We’re not a clinical service, but we’re open to anyone with a mental illness who has a certain level of wellness. It’s a big job. We’re responsible for the atmosphere and the dynamics, and we take everyone out every day. And to be honest, it’s exhausting but you know, you whack the smile on! Sometimes it can feel that my life is always about my illness. I live with it; I work in it. I love my job but often I do feel it might be healthier to work in a different field and work on my own sometimes, not surrounded by so many people. The thing is though that having lived so long with the illness, I probably don’t trust myself as much as I should in terms of future ambitions and what I want to go for. Certainly, part of it is protecting myself too. I just do not want to get unwell again, so I need to keep my stress levels okay. Stress is one of my big risks. One of the best things about my psychiatrist was that he would often put the onus on me with medication. ‘How do you think you’re going? Do you want to decrease or increase?’ So I’ve 10

)

learnt along the way about what works and what doesn’t. That probably goes for everything in terms of my recovery. I really had to learn how to manage myself. It was love at first sight with Gerard — movie material really. We’ve been together four and a half years. He works in Mental Health too, and it does make a difference that he understands what could happen. I haven’t actually been unwell since we met so he’s never seen that. He’s heard many stories. We’re both quite clear that he’s not my carer — he’s not in a caring role — but I know that if I did get sick he would be. And I would struggle with that. I would really struggle with that. I don’t want him to feel like he needs to look after me. I think I’d be embarrassed as well. I’ve made a decision that I won’t purposely think about my illness on a day to day basis because I don’t want it to direct my life too much. I’ve been living symptom free for six or seven years, but every now and then I do get a little bit off kilter (my anxiety levels will go up, sometimes I might get a bit of paranoia, just a general feeling of not being quite right), and I know what I need to do with that. I purposefully keep a distance from Gerard then, and it’s a matter of ‘Look I know what I need to do.’ Cutting out stimulation for a while

tends to do the trick, usually. Like when I get home from work. I’ll go into my room — no light, no sound — and just chill out. Meditation is another good one; it turns the brain right off. When I was sick it was the only respite I ever had. My parents were a bit worried about Gerard at first. This was the first time I’d moved out of home since I’d got well, and suddenly they had no control over what might happen. It would have been a big risk for them to let me go, but in the end, it was just trusting myself and Gerard to keep things on track. They love him to death now, too. My parents are living in the country these days, semi retired. They don’t have to worry about their son anymore. I’ve expressed my appreciation many times for what they did for me through that time because it really was one of the key points to my recovery. And I don’t think they understand that. I don’t know whether it sinks in how valuable what they did then was to where I am now. We’ve got a fabulous relationship, and we don’t talk a lot about those other times. We’ve made our peace with it as a family.

(

Gerard Reed (partner) Brendon told me he had schizophrenia the second or third time we went out. He said he wanted to be up front about it but in a way, I didn’t understand why he needed to. It just didn’t make any difference to me. All I saw was this beautiful, intelligent, loving person in front of me. I was pretty new in the Mental Health scene then. Maybe if I’d been a bit further down the track and had seen what schizophrenia could do to some people, I might have been more fearful. I haven’t ever seen him terribly unwell. I’ve seen him on the verge of unwellness. I haven’t gone through the huge episodes that his parents went through. I’ve been lucky in that respect. Stress is a huge trigger, so even when Brendon says he’s getting stressed and he’s on edge, I tend to play it down rather than keep talking about it and making him more anxious. In some ways, I try to normalise a lot of his experiences as well: I tell him there are times when we all feel out of our depth in conversations with people, or we get tired, or we

I’ve expressed my appreciation many times for what they did for me through that time because it really was one of the key points to my recovery.

) 11

(

I’ve made a decision that I won’t purposely think about my illness on a day to day basis because I don’t want it to direct my life too much.

)

(

I’ve expressed my appreciation many times for what they did for me through that time because it really was one of the key points to my recovery.

) 11

( experience a deep loneliness. He tends to interpret it as illness behaviour, but I can say, ‘Well I haven’t got schizophrenia but I’ve experienced that as well.’ Because the world can be a lonely place can’t it? So sometimes I can say to him, ‘Brendon, that’s just being human.’ He really does manage it himself. He doesn’t expect me to monitor it. I’ve got six brothers and sisters, and there are lots of family events, and Brendon is good at saying, ‘I’m not up to it or whatever.’ I have felt some guilt sometimes. I remember one party where he came up and said, ‘Can we go soon?’ and I said, ‘Yeah, yeah, yeah’. About half an hour later he walked up, and I could see, you know, he had glassy eyes, and I could just see. He said, ‘I have to go right now.’ I felt guilty that I hadn’t picked up the cue. That when he said ‘soon’ what he was really saying was, ‘now’. He was saying, ‘I’m not up to this.’ I am forty, and he’s thirty-five, and this is the first really serious relationship for both of us. I do worry about our future, financially. There’s no money behind us. We both missed ten years of being in the workforce: I was in the priesthood and he was in hospital. But otherwise, I don’t worry about us.

Because the world can be a lonely place can’t it? So sometimes I can say to him, ‘Brendon, that’s just being human.’

)

I get concerned sometimes that Brendon’s lack of confidence actually denies him opportunities at work though. He doesn’t drive. He was unwell from the time he was sixteen to twenty-six, which is the time when everyone gets their licence, but he’s terrified of doing it now, and he misses opportunities simply because of that. Brendon does so many things well. He’s a beautiful speaker — he does Community Education presentations and he loves it. And he’s a beautiful writer and painter, and I suppose I fear a bit that, you know, he’s got all these talents that he undersells because of what he’s been through. But I admire Brendon so much. He’s enormously resilient and smart and sensitive, and I know I’m a beneficiary of that. His experiences have made him very much in touch with what we need to do to be okay. There’s a quote, a good quote, that goes something like, ‘You don’t measure success by what you do but rather what obstacles you’ve had to overcome to get there.’ I look at Brendon, and I think, that’s it. That’s absolutely it.

Because the world can be a lonely place can’t it? So sometimes I can say to him, ‘Brendon, that’s just being human.’

)

But everyone’s a bit vulnerable. Elizabeth Ingram (mother) Mental illness is something that you can’t really describe. It’s easier to relate to someone who has experienced it in their family; they’ll know what you’re trying to say. Empathy is difficult without the experience. The old stigma is still there. All the ‘Oh they’re mad’ stuff is still there. And it’s very hard to bear. We’ve been fighting for years to dissolve the prejudice. I know it’s ignorance more than anything and just being afraid. If I didn’t have any chemically unbalanced people in my family, I probably wouldn’t want to know about ‘mad people’ either. When I was younger and in nursing, I avoided mental hospitals like the plague. It’s a whole different life being involved with people with mental illness. I have two sons who are unwell, and I feel my marriage broke up because of my sons’ illnesses. I’ve chosen to stay without a partner and live my life alone. Not that I’m dedicating myself to my sons, but I wouldn’t want to have to explain to someone why I do this. You don’t want to be wasting your time with people who can’t understand it. My children are all around their fifties now. I was married when I was twenty, and I had them straight away. The four were all born one after the 14

other: three sons and a daughter. It’s the middle two boys, Peter and Jack, who have mental illness. My other two children are close, just a phone call away. They’re both a great help to me. My eldest boy is involved in a special Aboriginal diversionary in the North. He’s trying to make a difference, to help keep Aboriginal kids out of gaol. And my daughter works at the Council: she’s got six months to finish her accountancy certificate. They’re great

(

We’ve been fighting for years to dissolve the prejudice. I know it’s ignorance more than anything and just being afraid.

)

survivors, those two, and very successful. But everyone’s a bit vulnerable. The whole family’s quite sensitive. Whether it’s our mixed blood or not I don’t know. And everyone’s been very clever. The children were quite brilliant. Peter was artistic, right as a little boy. He did an exam, sent away in the paper to do an art course when he was about probably eleven or something, twelve. And they sent him a little thing to draw, and when he drew it, you couldn’t tell which was 15

(

We’ve been fighting for years to dissolve the prejudice. I know it’s ignorance more than anything and just being afraid.

)

(

We carers know when they’re getting sick. We’re living with them. We know the signs. They’re a different person.

the print and which was his drawing. That’s how clever he was. But of course, all those years ago, who would send their son to be an artist? He was always eccentric, and he’s always liked nice things. And like I always say, if you’re rich, you can be eccentric, and if you’re poor, you’re just plain goddamn bloody mad. And that’s what it has been. The illness in Peter and Jack started in their late teens, between, say, eighteen and twenty-one. I do feel marijuana triggered their episodes, but I’m only speaking from my experience with that. I’m not speaking from anyone else’s. I remember a major episode that happened not long after my marriage break-up. It was a terrible time. Peter had been sick a lot before but not like this. I was in my fifties, and the divorce had devastated me financially, and of course, the strain reflected back to him, you see. The boys were always used to Mum being able to keep the ship sailing. I was working and trying to get money to build a new house, and I was renting a place. And then one night, when I was away, he smashed the whole house to pieces. Every wall had a hole in it. Every window gone. The verticals down, the lot. And it was because they wouldn’t keep him in the hospital. My daughter had tried and tried for a week, but she couldn’t access an intervention. 16

)

When he was finally taken away at 11:00pm, he was only away for two hours, then he was returned to our house. His young son, who was only eleven or twelve years old, was there. I wasn’t. Peter went on to smash and trash everything in sight. It must have been so terrible. And finally he was hospitalised, and I was home, walking and walking around the house, not knowing where to start fixing it up, and one of the boys’ friends came around, and he said, ‘How are you Bess?’ and I said, ‘For the first time in my life I feel there’s no point for me to go on because it doesn’t matter what I do, it doesn’t matter how hard I try, I’m never going to get anywhere. It’s always going to be no good.’ After that, this young man used to come around every night when he’d finished work. He’d see the light on, and he’d come and say, ‘How are you going?’ And I’d say, ‘Oh got a little bit more done today.’ And then he offered to paint the whole house for me, and he went and got others to help to do this and to do that. Apparently his mother had committed suicide. I still see him in our little village, and when I do I’ll say, ‘Thanks for saving my life that time.’ And he’ll say, ‘Oh, I knew it was too much for you, Bess.’ And we’ll laugh.

(

We carers know when they’re getting sick. We’re living with them. We know the signs. They’re a different person.

)

(

And I remember something that was said to me: ‘You’ve gotten through it and now you’ve got to go out and help all those other poor buggers in there asking those questions.’

Getting through this part of my life, that’s what made me start the advocacy work. I went to the Schizophrenia Fellowship, and all these people were getting up and talking, and I thought, ‘Oh my God, these people have all been going through what I’ve been going through.’ And after that, I went to every conference and read everything I could. And I remember something that was said to me: ‘You’ve gotten through it, and now you’ve got to go out and help all those other poor buggers in there asking those questions.’ At the moment we’re still fighting to change the Mental Health Act to try and allow carers to access an assessment to help a person with severe illness into care. We carers know when they’re getting sick. We’re living with them. We know the signs. They’re a different person. It’s easy enough to spot. Even their dogs know when they’re getting sick. You see the dogs looking, watching as the person moves roughly around the house, rousing on everything… Often the person’s got to commit a chargeable offence before you can get them into hospital to access treatment, and that’s why so many people with mental illness finish up before the courts. As a carer trying to get help, you’re at your wits’ end. You know something’s happening, but you 18

)

don’t know when. It’s like you’re watching for a kettle to boil. And up where I live, you might ring up the hospital at 4:30 on a Friday afternoon, and you may not be contacted until Tuesday or even Wednesday. And there you are with a badly disturbed person, and you don’t know whether they’re going to commit some serious damage to themselves or someone else. It’s terrible. It’s terrible that you have to live through that. I lived through it for fifteen years. And it’s such a strain and a worry that, to the people you’re asking help from, you almost look unwell yourself. Sometimes I have felt so wretched and distraught that I’ve thought they should be taking me away too. As recently as two years ago, during Peter’s last episode, I still had to wait for him to commit a chargeable offence before I could get an assessment. Even after me doing all this advocacy work: writing books, organising forums, conferences, meetings. Everyone knows me everywhere I go, getting awards for the work I’ve done, carrying around clauses from the Mental Health Act in my pocket, still no good. And with what I know and I still can’t get an assessment… Doesn’t that say how difficult it is? I was in Sydney, about to take my daughter and granddaughter to a wonderful Indigenous 19

(

And I remember something that was said to me: ‘You’ve gotten through it and now you’ve got to go out and help all those other poor buggers in there asking those questions.’

)

(

And it’s been about six months and he’s taking his medication and slowly he’s getting his life back and I’m hoping he’ll pick up the brush again.

Education conference in New Zealand, and I gets a call. ‘Peter’s been picked up at Byron Bay. He’s lighting fires and feeding his dogs in the main street.’ So up I go back home and have just twenty hours then to fix the house that’s been wrecked. I get a garden rake and just rake up all the rubbish and the smashed up tellies and radios and put the lot in the bin. And I ring the glass place to get the windows replaced, and then I get on the plane. And no matter what was happening with Peter that time, I had to still go to that conference. I had to put my daughter and my granddaughter first. It’s hard to divide yourself into all those pieces for everyone in the family, and sometimes it’s hard on the well kids. You spend so much of yourself on the ones who aren’t well that it can seem like you love them more. But it’s not that. You just know you have to go to the sick person. It’s the sick fowl in the fowl house. The time has to go into the one that needs the most help. After that episode, Peter was put on a Compulsory Treatment Order (CTO). This can happen after you’ve had a serious episode where you’ve been gazetted: you’ve been put away against your will. He had to have an injection every two weeks on the CTO. He started at the highest level, and he 20

)

hated it because it was so strong and left him with nothing. No energy. And he also had such bad mental associations with the old sort of injections. By the end of each fortnight, he’d just be starting to feel… you know, he’s a gifted artist, and he would just start to feel again, and he’d have to go back for another injection. And so I was seeing a boy, who is normally so gifted and working and doing things, just sitting there with no hope for his life and so dejected. And so I made a special appointment with his psychiatrist and the caseworker, and I went into battle to get him off the injection. When the review came up, I said ‘Give him a chance to see if he’ll take his medication. Keep him on the Order but on an oral basis.’ And they allowed that. And it’s been about six months, and he’s taking his medication, and slowly he’s getting his life back, and I’m hoping he’ll pick up the brush again. I asked to keep him on the Order because in the past, the minute he’s released from compulsory treatment and compulsory counselling, he thinks, ‘I’m better. I don’t need any more tablets.’ And then six months later, we go through the same all story again. It’s like you and me. Doctor says, ‘Take your antibiotics.’ And you take them, and

then you feel better, so you stop taking them. Same thing except you and me, don’t then go and smash the house and destroy all the finances and destroy everything, everything. The main thing I have wanted to do is to help people understand mental illness and create awareness about the services available. In 2000, Hasting Council gave me finance for printing and travel and telephone so I could produce a book of information for carers. It was one hundred and fifty pages: all the things you need to know about criminal justice, medications, services, little descriptions of schizophrenia, bipolar and all that. And it’s been reprinted about five times now. I just wanted to help other people cope as I have learned to cope. About two or three weeks ago, I woke up one morning all tearful and felt very vulnerable. I’ve got a serious lung condition and some other health issues, and I thought, I am really running out of energy. The wear and tear of this life is starting to get me now. But thank God, I’ve got a great faith because I couldn’t survive without it. I’ll say to God: ‘I’ve tried my best, but you’ll have to give me a rest off it. And then I’ll try again.’ I have an arrangement with him that I will do it when I can, but if I can’t, he’s got to help me.

In 2001, Elizabeth won gold awards for Health Promotion and Prevention at both State and National level.

Peter, my son who’s the biggest worry to me, he looks at me, and he says ‘Of course you’re tired, Mum. Have a rest.’ He’s so lovely when he’s well.

(

I just wanted to help other people cope as I have learned to cope.

) 21

(

And it’s been about six months and he’s taking his medication and slowly he’s getting his life back and I’m hoping he’ll pick up the brush again.

)

In 2001, Elizabeth won gold awards for Health Promotion and Prevention at both State and National level.

Peter, my son who’s the biggest worry to me, he looks at me, and he says ‘Of course you’re tired, Mum. Have a rest.’ He’s so lovely when he’s well.

(

I just wanted to help other people cope as I have learned to cope.

) 21

I just saw Mum as Mum. Nickolas Yu (son) I was born in 1973 and spent most of my growing up experience in the inner city of Sydney with my brother and sister. My sister’s five years younger than me, and my brother’s seven years younger. Then there’s my Mum and my Dad. That’s our nuclear family. I was probably about fifteen when things changed. Mum walked out on us for a little while. It may have been a couple of weeks or more before she came back, and then, five or six months after that, she came in and said that she’d just had a baby. ‘Nickolas, you have a new brother.’ I didn’t believe her, but I went to St Margaret’s in Bourke Street, and I saw this premature baby, and I realised this really was my brother. Then I put two and two together and knew my Dad was not the father. My Dad didn’t really want to have Mum there at the house, and so she went and stayed at a cheap hotel in the city with her baby. And I think she spent some time with her sister as well. In the months following that, she was very distressed. She didn’t have a place to live, and she didn’t have a marriage. She contacted Centrecare or DoCS to kind of say that she was struggling, and I think she was interested in getting some foster care.

(

It must have been so difficult [for Dad]. There was so much confusion. And sadness. And we were absolutely alienated.

)

But once Mum had made contact with those agencies, that took a momentum of its own, and they considered her unfit. The short of it was her baby was removed from her care, and Mum came back home to us. She was always crying and upset and, in the following months, became disorganised and distressed. It broke her heart to lose her baby. And from about that time, she started to respond to voices. For the next five years, we didn’t have a meaningful conversation with Mum. There’d be all this delusional material, or she’d be shouting or laughing hysterically. It never struck me that she had a mental illness though. I’d never had any contact with it. I just saw Mum as Mum. First off, I thought she was just acting, and then, as time went by, I thought ‘Mum’s weird, and I don’t know why’. I know now that she was floridly psychotic. She remained unmedicated, in terms of 23

(

It must have been so difficult [for Dad]. There was so much confusion. And sadness. And we were absolutely alienated.

)

(

It’s quite common… for one of the siblings to take on the emotional care. There’s a word for it — parentification — and often it has a negative connotation, but I don’t see it like that. I just think of it as an expression of love, an expression of family.

schizophrenia, for five years. That’s five years with no health visits, no contact with mental health services. Absolutely nothing.

As a father myself now, I have so much respect for Dad because to live with a person who you once loved, who had a child outside your relationship, and who is psychotic, and then you are left to bring up the children and keep going...? Well, a lot of people, wouldn’t do that. It must have been so difficult. There was so much confusion. And sadness. And we were absolutely alienated. When Mum descended into the world of madness, so did we.

little brother and sister, and that’s where we hung out for hours every day, for years. I played heaps of basketball; it was kind of my outlet. We had a whole community there, a motley crew of people, mainly very multicultural, lots of economic and social disadvantage but held together with really good staff. And there were volunteers, like a lawyer, a really lovely man who ran this whole basketball club for us. So at Moore Park, I had these wonderful mentors who knew what was happening for me and helped me get through things. You know… ‘You’re a good bloke, Nick’, and ‘You’ll be all right’, and ‘You’ll be our prime minister one day’. They all had different messages for me. One of my basketball coaches always said, ‘There’s so much you can do in life, Nickolas, but you can’t do all of it. And that’s okay — you just have to focus on what you really want.’ And another was always telling me, through his sports and the way he called from the sidelines and encouraged us, to never ever give up. Another person was like, ‘Think outside the box, Nickolas, because life’s not straight. Life is complex and rich.’ I didn’t understand all the messages at the time, but now I look back and laugh about some things, and I see myself doing things that way.

Moore Park Recreational Centre was close to where we lived in Surry Hills. I would take my

When I was around seventeen, I took a furnished room to try and get away from the madness

My father looked after us all the way through. He didn’t seek support. He’s Chinese and very old-fashioned, and for him, mental illness was very much about a loss of face and something to be kept within the family. It was never spoken about. But I wonder now, looking back, whether part of it was also that he doesn’t speak very good English. When you think about it, how do you know where to go? Your wife is floridly psychotic; you’re looking after a ten year old, an eight year old, a fifteen year old; you don’t speak really good English — where do you go for help?

)

(

schizophrenia, for five years. That’s five years with no health visits, no contact with mental health services. Absolutely nothing.

Moore Park Recreational Centre was close to where we lived in Surry Hills. I would take my

When I was around seventeen, I took a furnished room to try and get away from the madness

)

of home. I dropped out of my HSC and started working at McDonalds, but after a very short time, probably a few months, I moved back. It was hard for me to move away, and there was my sense of guilt about my younger brother and sister. I was very protective of them. I knew they didn’t have a Mum in the sense of what mothers usually are: she just wasn’t present. And while Dad looked after us as best he could, he wasn’t emotional. I can probably count on my hands how many times in that whole five years that he ever spoke to any of us kids about what was happening in our family. I think I realised that it was my responsibility to take on part of the parent’s role. It’s quite common in families where there is an adversity for one of the siblings to take on the care, the emotional care. There’s a word for it — parentification — and often it has a negative connotation, but I don’t see it like that. I just think of it as an expression of love, an expression of family. We were living in two worlds. There was the normal world where I went to school and just wanted to be ordinary, just an ordinary adolescent. Everything was kind of a façade in that world: you didn’t talk about anything that was going on. And then there was home — crazy and chaotic. Nothing was normal there, even down to the food that we ate. Like before she got unwell, Mum used

( 26

to cook beautiful pastas and things like that, and when she didn’t cook anymore, Dad tried to make up that love through those same dishes. But with his Chinese version, there’d be corn and peas ending up in spaghetti bolognese and stuff. No, never normal. Every week, my mates and I used to go to half price Tuesday at the cinema, and we’d have pizza and gorge ourselves, you know, trying to outdo each other. And I remember one night, Mum came into the restaurant, and she was screaming, she was shouting, she was unkempt, her face was flushed. And everyone was looking over, and the managers were kind of going around her, and my friend said, ‘Nick, your Mum’s over there!’ And I looked at him and said, ‘That’s not my Mum.’ And I remember he said, ‘That’s your Mum.’ And I said, ‘That is not my Mum.’ And that was the end of the conversation. And I remember going home that evening, and I remember crying because I knew that I had in some way disowned my mother. But as time went by, I kind of started to realise that I was living in a couple of different worlds, and if I was to have any chance of being happy and getting myself together, I’d need to reconcile them. I always wanted to be a teacher, so I went back to school, and I sat my HSC the next year. I think

But as time went by, I kind of started to realise that I was living in a couple of different worlds, and if I was to have any chance of being happy and getting myself together, I’d need to reconcile them.

) 27

( 26

) 27

(

But when I see Mum, when she walks in here and instantly smiles and looks at my kids, I just think it’s a beautiful time.

I got about 51 and just missed out on teaching. And so I had to make a tough choice again. What do I want? What do I want? And it was clear that if I wanted to teach, I had to do the HSC again. So I went back the third time to a different school, took a whole bunch of different subjects, and I was so determined to do well. I got over 90 and started university — initially law/economics — and a year later, I had an opportunity to go overseas and study at Oregon State University on exchange. When I came back, after twelve months of not seeing my family, I was twenty-one. And Mum was no longer floridly psychotic. A friend from Moore Park who worked in Mental Health had somehow got someone to come and see Mum, and they got her medicated. She was still unwell but so much better than she was before, and she remained like that for almost ten years. Until about four years ago. Dad got sick and went to hospital and couldn’t continue his selfemployment for a while, and we started to realise what a precarious financial state they were in. We were lucky enough to get Dad into a housing commission place (obviously, he wanted to be separated from Mum because he’d been looking after her for fifteen years) and Mum into housing commission too, just across the road from him. 28

)

Since then, Mum’s been more unwell. And this is where our story is up to, I guess… She spends her days, every day, the same. Early every morning, she goes into the city, then sits at McDonalds for much of the day and is back home in the night. We try to get her to stay over here often with us (my wife Jo, and our baby, and toddler), or she stays with my sister, or we take her out, or we try to meet her. There are times when my brother and sister and myself think about what will happen to Mum in the future. About whether we should get her supported accommodation and what else we should do. Meals, finances, housework, physical care, medical… all of that. But there are other times when it’s all kind of okay, and we all just bumble along. And my brother takes part of the care, or my sister does, and we think we don’t need to make changes for another three months or six months or… An interesting thing, I think, is that this is a really beautiful time of life for me. I don’t have the urgency about everything that I used to. My wife’s a very grounded person, and she’s more earthy and good at being present, whereas I’ve always been very driven to pack as much life in as I can because life is precious… You never know, Mum might become really unwell one day, or hard times might

return. But since I’ve had my kids, the urgency has left me because they’re so gorgeous right now, and Jo is such a beautiful and incredibly loving person that I’m in no rush to move on. It’s more about savouring, appreciating, and enjoying than anything else. I know that I’m a very lucky person — one of the luckiest. Life can be precious without being urgent. I see Mum now… sitting down at McDonalds, looking at the pigeons, talking to herself… I imagine there’s probably not a lot of joy in that for her. But when I see Mum, when she walks in here and instantly smiles and looks at my kids, I just think

it’s a beautiful time. She’s well enough physically and mentally to enjoy it. She’s here with us, we’re all here, she’s quirky, she’s erratic, she’s a bit mad at times; but so many of us are a bit like that… and I just think that life is precious still. And what I want now is presence. That’s what I’m yearning for and being mindful of. Being present with my young family, and when I see Mum, being present with her. So whenever I get seduced into that anticipatory worry or start thinking, ‘What’s going to happen when she leaves?’ I kind of gently try and bring myself back to, ‘Mum’s here, right now.’ And I remind myself of what we got through, and 29

(

But when I see Mum, when she walks in here and instantly smiles and looks at my kids, I just think it’s a beautiful time.

)

(

If a kid falls down, and you put a bandaid on, they see that as kindness and love, and that you care, and the symbolism of it far outweighs what it actually is. Little things matter.

that we’re doing well; we’re doing as well as we can, and we deserve to be proud of that. About seven years ago, with some friends, we set up a community program called ON FIRE ! for kids whose parents have mental health issues. Our approach is strengths-based, so that instead of looking at what these kids don’t have and their problems, we focus on what they do have — their hopes and aspirations, their achievements and positive qualities. The idea is to create spaces where these kids can simply be, where people don’t look at them as victims, but rather, convey trust, hope, belief, and confidence in them and help them continue developing a resilience, so they can grow and flourish. A place where they can find meaningful peer support, personal skills, and positive messages for an even richer life. ON FIRE ! has camps and fun days throughout the year, and at any given time, there are thirty to forty kids, some of whom go on to become leaders themselves — recently three have gone on to study law and communications. ON FIRE ! is totally volunteer led, driven, and community based. Individuals donate, and I speak to different groups like Lions and Rotary, and they’re often very generous. We’re supported by the Schizophrenia Fellowship of NSW: they 30

)

provide our insurance, they do our accounting for us, and they provide a whole support umbrella that organizations need these days. We couldn’t do without them. Of course people sometimes say, ‘So, you take the kids to camp? They have some fun, a bit of leisure, but then, aren’t they just going back into their dysfunctional families again? Surely you’ve got to go to the root cause of those things? Surely what you’re doing’s just a bandaid?’ But I say, ‘Do you know how powerful a bandaid can be?’ If a kid falls down, and you put a bandaid on, they see that as kindness and love, and that you care, and the symbolism of it far outweighs what it actually is. Little things matter. You just do tiny, small things, and sometimes they’ll have a ripple effect, a transformative effect. And sometimes they won’t. You never know. All you do know, all I know, is that as a community we have a responsibility to help create those possibilities. Bandaids can be beautiful as well. Nickolas is now a leadership officer, coach, lecturer, and researcher completing his PhD in workplace coaching (at last count he had four degrees!). email: onfire@sfnsw.org.au 31

(

If a kid falls down, and you put a bandaid on, they see that as kindness and love, and that you care, and the symbolism of it far outweighs what it actually is. Little things matter.

)

You never stop being a mother. Beth (mother) These are his files. I got them out for you, and it’s helped me too because it’s all been buried. And it’s good to bring them out again. Here are the albums: this is James at primary school and here… he’s a choirboy. He was captain of the school in Year 12 — I remember I bought him that blazer. He was Youth of the Year for Lions Rotary, Dux of his year twice. Best Teen. When he was a little boy, he didn’t speak. He just sang. He was always gifted. I’d go up to the local Art and Craft Show, and he’d come along, and lo and behold, ten years old, he does a painting, and it gets in for exhibition. And they wanted to take him and teach him more, and he said to me, ‘I don’t want to paint ladies.’ And so he went into music. He always wanted to do things far beyond his years, and it was a challenge to raise a child like that. I taught him everything I knew, and that wasn’t enough, so we’d go to the Museums, and then he became a Discoverer and went right through. It wasn’t always easy for him at school. I would take him up in the morning and bring him back home at lunchtime in primary because if his peers

found they could upset James, they would. He would hide under the building from them. Then I would have to take him out in the afternoons and let him run all over the park, just to get it out of himself. He must have put in such a lot of effort. James has a great empathy and understanding for how other people feel. Maybe it’s because he’s been through so much himself. I took him to the doctor at the end of Year 10 because he was getting depressed. He had an assignment to write about the holocaust, and I knew it would be very hard for him. He was very deeply hurt to write about it. He was first in his class all the time, and that’s something that seriously disappointed him when he was getting ill — his school results. He desperately wanted to go to university. He was stacked with sixteen units and three unit levels, and even if you told him two units was all that

(

James has a great empathy and understanding for how other people feel. Maybe it’s because he’s been through so much himself.

) 33

(

James has a great empathy and understanding for how other people feel. Maybe it’s because he’s been through so much himself.

) 33

(

Once we took him to a hospital for a whole day of tests, and at the end the doctor said to James, ‘Best thing for you: go and get a job. And cut your hair.’

was required, and he’d get the pass he needed, he wouldn’t let you change it. He just took so much on. I did everything I could. But his mind was just was not there for the exams. I was looking for answers for many, many years because my child was different. I knew he was different. I’d keep notes on the medications and the doctors: who was helpful and who wasn’t. Everything we tried. And some of the things that were said to us. Once we took him to a hospital for a whole day of tests, and at the end the doctor said to James, ‘Best thing for you: go and get a job. And cut your hair.’ At twenty-one, he really wasn’t well. He was flipping. One minute he would come in all dressed in white and the next, all in black. We’d been watching him like a hawk after the hospitals turned us away. Finally, I had to call the police to come and take him in. It was terrible doing that. And of course the neighbours were watching; they knew. When the Police took him, there weren’t two doctors at the hospital to sign him in, and so there he was, and he wasn’t medicated, and he wasn’t fully admitted, and he saw an Exit sign. And there I am at home. I’m thinking I’ve got him safe, in a safe place where he’s going to be all right, and I can have a night’s sleep, but I wake up in the 34

) morning to an early phone call: ‘Beth, I’m Sister So and So… I’m terribly sorry… I’ve lost your son…’ And I’m looking down the road, and I’m thinking, ‘What am I going to do? They’ve lost him.’ The Police couldn’t find him; they didn’t know where he was. But James phoned me up at 5:00pm in the evening — he’d been walking around the streets all day. ‘Come and get me Mum’. He’s always done it. Five o’clock and he’s a homing bird. And thank the Lord for that. But then, we had to get the Police to put him in hospital again. And a paddy wagon came, and oh dear, there he is in his dressing gown, and he’s reading the bible and he hears the siren, and he throws his dinner down, and he’s jumping up. And he was so small then, tiny, and he wouldn’t hurt anybody… It shouldn’t have happened. He was in hospital for almost seven weeks, and we realised they were putting boys together into group homes, but we didn’t want any of that. My way is to keep my family together. We stood up, James’s father and me, and said we wanted to do things differently. And weeks later, they took us into this room, and I was praying and praying. And they treated James like a child, but we stayed firm. We wanted to keep him. We wanted to look after him. We didn’t want him to be alone.

It was definitely the best thing for us. It was difficult. He wasn’t himself for a very long time, but James was always very strong willed, and that’s served him well. That and his sense of humour. This is his sanctuary. It has to be that sort of place. He has to be able to come back here and know he’s safe because if he didn’t, he’d be pacing up the floor, and he’d be ruined. It took a long time to get to this; it took years. He’s thirty-seven, and we’re still very close. You never stop being a mother.

James I had my first and only major psychotic episode when I was twenty-one. There are a number of environmental factors that can bring out schizophrenia, and probably the thing that sort of pushed me over the edge was that I was having a lot of emotional turmoil. It was about a relationship that didn’t happen. I felt very depressed, I started hearing voices, and then there were delusions accompanying the voices. Basically the voices were telling me that I had some sort 35

(

Once we took him to a hospital for a whole day of tests, and at the end the doctor said to James, ‘Best thing for you: go and get a job. And cut your hair.’

( of higher spiritual purpose — that I was on a mission of some sort. The voices would take the personality of friends, and things got bad really fast. I lost all touch with reality. Funnily enough, I’d gone to five different hospitals to get treatment. I didn’t think I had schizophrenia or anything. I went because I thought I had a leech in my blood system. I was delusional. Every hospital we went to sent me away. Nobody picked up that I was having a psychotic episode. I was still at school when I started seeing a psychiatrist, who was recommended by a GP. I was sixteen, and I was treated for a nervous disorder or depression. My school work was going down hill, and I think my teachers might have noticed that things were a bit weird at times, but I was in all the top classes, and I guess they expected that I would muddle through. Looking back, things could have been a lot different, maybe a lot better, if schizophrenia had been discovered earlier. People who get help with early intervention are more likely to recover or have a better recovery. If I’d had a diagnosis, and it was taken care of early, maybe I could have been more realistic about my school performance, and that would have given me a lot more options, like, say, going to university. But after Year 12, I left school and 36

Looking back, things could have been a lot different, maybe a lot better, if schizophrenia had been discovered earlier.

)

started playing in a band, and I was pushing my physical boundaries with things like late nights, stressful work, some involvement with cannabis, and other environmental factors. All these things have affected the way things turned out. I’ve enjoyed relatively good mental health over, say, the last twelve years, but I still have some other residual symptoms that come and go. I’ve been dealing with various ones over the years. Sometimes depression. Sometimes voices. A fair bit of the time, there’s anxiety. And when I’m out with the band, I do sometimes have a thing about what people think of my playing and stuff. Just setting up musical equipment, which is a very rudimentary thing, can be very, very difficult for me at times. I’ll feel a wave of anxiety and shaking, maybe, and I’ll just be trying to do the best I can when it comes to doing all those musician things. The other guys in the band are supportive, but they probably think I’m doing okay really. They wouldn’t always realise what was happening — I don’t let on. I have a bit of a poker face. The medication I take keeps me at an even level. I explain to people that medication normalises the illness. There are trade offs, depending on the sort of medication you take. I feel it does affect creativity for me. It cuts out the peaks and troughs. 37

Looking back, things could have been a lot different, maybe a lot better, if schizophrenia had been discovered earlier.

)

( So like, say, you don’t really feel fantastic, but you don’t feel too bad either. I’ve seen lots of doctors over the years, attached to the hospital and outside the hospital. Sometimes I’ve been treated with compassion by health workers and sometimes I’ve felt that they couldn’t care less about me or my depression. And that was hard to deal with. When you’re going through this illness, there are different levels of it. So a person can be at a stage where they seem functional, but they can’t sort of tell people what’s wrong. They can’t say, ‘Can you help me fix this?’ People aren’t always articulate, and that means they do miss out on the treatment they need. I suppose Mum and Dad and myself have pursued doctors to find new ways to make things better. I’ve had doctors who propose various treatments in vitamins or diets to help with things, and I’ve changed doctors every now and then to try and find different medications and different treatments. But I don’t see doctors for talking therapies any more, just for medication. I just got to a stage where I was comfortable, and I didn’t need someone to talk to me about things that were going wrong or even need someone to listen to me. I’d just had enough.

... a person can be at a stage where they seem functional, but they can’t sort of tell people what’s wrong. They can’t say, ‘Can you help me fix this?’ People aren’t always articulate, and that means they do miss out on the treatment they need.

)

Mainly I’ve kept playing gigs over the past eight or nine years with this band I’m in and various incarnations of it. We play mainly 50s and 60s rock’n’roll and Neil Sedaka, Barry Manilow. I play saxophone, keyboard, and vocals, and we do up to two or three gigs a week. It’s how I’ve kept making my living through everything. I live here still with Mum and Dad; I prefer to stay because we look after each other. Certainly they’ve looked after me when I’ve needed it. And they’re not getting any younger. If there’s one thing I still feel I would love to do though, it’s go to university and do something like a degree in music or something relevant. Over the last few months I’ve been thinking about trying to get some help to apply and get the ball rolling because hopefully I’m at a stage in my life where I can sort of concentrate and not have to drop out because of illness. I really miss the study. And it’s how many years now? Twenty-three since I was doing really well? At one stage I used to do really well. And I miss that. I do.

)

You don’t look back. Lisa Douell I had a normal childhood. I was really a happy kid and everything — apart from sucking my thumb. I sucked my thumb until I was in Grade 4, and then I still kept sucking it at night-time until I went to high school. So I don’t know if that’s because I was insecure or something. Or maybe I just had a really delicious thumb. Mum says I started going a bit strange when I hit puberty, but I don’t remember that. I just remember going to bed one night and waking up because I heard my bedroom window smash in, and I saw the curtains fly open and glass go everywhere, and I thought bad people were coming to get me. I was screaming and screaming and my brother ran upstairs to Mum and Dad, and Dad came down with the big baseball bat in his hand, and everyone’s like, ‘What’s going on?’ But there was no one there and no window was broken or anything. And we ended up, all the family, sleeping in Mum’s bed that night because we were all just petrified. And we just didn’t know what was going on. I was thirteen. It just went downhill after that. Every night, as soon as it started to get dark, I’d just get very anxious, and I’d cry a lot and get shaky. I started sleeping at the foot of Mum’s mattress on a

collapsible bed, but I’d spend all night awake, just lying there, terrified. Sometimes at bedtime, I’d go to my room to sleep, and then I’d hear Mum and Dad turn off the TV and go up to their room, so I’d run up to be with them straight away. They started leaving the television on to trick me, but I’d listen very carefully, and I could hear them tip-toeing upstairs, and I’d run up and scream and scream until they let me sleep with them.

(

Everyone else had spent Year 8 making their little groups of friends and everything. So I definitely felt like an outcast. I wasn’t even in the daggy group. I was just in no-man’s land.

)

We went to a school counsellor first because I wasn’t making it to school half the time because I was so tired. I was doing weird stuff in class too, and I ended up missing about a year all up. When I came back after all that time off and tried to fit in, it was hard. Everyone else had spent Year 8 making their little groups of friends and everything. So I definitely felt like an outcast. I wasn’t even in the daggy group. I was just in no-man’s land. 41

(

Everyone else had spent Year 8 making their little groups of friends and everything. So I definitely felt like an outcast. I wasn’t even in the daggy group. I was just in no-man’s land.

)

(

It was a good school though, a private girls’ school, and I don’t think I would have gotten through if I hadn’t been there because they helped me so much. They had the counsellor, and they gave me extra tutoring, so I could catch up, and the nurses in sickbay all knew me and would let me go and have a cry and a sleep if I needed it during the day. It was the counsellor who sent us to the child psychiatrist, and when Mum and Dad gave the family history, she pretty much diagnosed schizophrenia and put me on anti-psychotics straight away.

I don’t have just plain schizophrenia: it’s schizoaffective disorder. That’s like schizophrenia and bipolar disorder together. This means I have the highs and lows and the voices. (I don’t do anything by halves!) When I’m very sick I see things as well, and if I’m stressed enough it can get very bad. Stress is definitely the thing for me. And it doesn’t have to be bad stress. It can be happy stress too. It can start with good things. Like I’ve been really excited about telling my story today, so last night I was crying because I couldn’t get my head around it.

The medication made me more tired and made me gain weight. Like before going on medication I was like size 10, and then suddenly I had this tablet to take, and I blew up. And then amazingly, in Year 9, I got better, and I was well, completely well, until the end of Year 12. I wasn’t taking any medication or anything, and then the Year 12 exams hit, and it was the last exam, my psychology exam, ironically enough, and I sat down, and all of a sudden, it seemed to me like everyone was turned my way and looking at me and trying to take answers from my head. And so it had started again. And now I’m twenty-eight, and I’ve had symptoms pretty much ongoing since then.

But often it starts because basically I don’t handle confrontations very well, like if I have an argument with Mum and Dad. I was so young when I got sick that I didn’t develop normally in a lot of ways that teenagers do. Other kids learn at that early age how to deal with conflict and how to make relationships work, but I missed out, and so yeah, I am a bit immature in some ways, I think. I see a psychologist, and we work through all those kind of things. He’s the one I talk to most to work out problems and everything. It’s funny because I wrote him an email just the other day because I have this thing that when I’m manic, I just spend heaps of money. And then I’ll get better and I think, ‘Oh good, that’s the end of it. I can move on.’ And then come a month later I’ll get a bill,

Other kids learn at that early age how to deal with conflict and how to make relationships work, but I missed out, and so yeah, I am a bit immature in some ways, I think.

)

(

Other kids learn at that early age how to deal with conflict and how to make relationships work, but I missed out, and so yeah, I am a bit immature in some ways, I think.

)

like say a phone bill for $200. So anyway, I wrote to my psychologist, and I said, ‘I want you to teach me how to manage money because every time I’m manic, I spend too much, and then I’ve got no money till next week, and so what am I going to do?’ And he wrote back and said, ‘Rule one: don’t go shopping. Rule two: don’t go shopping.’ It was so funny. He’s really cool. I’ve got friends who have a mental illness, and their parents have kicked them out of home because they don’t want anything to do with them. But I couldn’t be luckier. My parents are the opposite. Mum and Dad are so supportive and have literally saved my life so many times. They’ve always said, ‘Your home is here with us’, and so I’ve been hospitalised for a long period only once in my life. It was last year when I just got too sick, and I ended up trying to commit suicide again. I was in hospital and the Critical Assessment Team came out, and they said, you know, ‘How can we help you? Do you want to be admitted?’ and I was just swearing and everything, but I said, ‘I need help’, and they said, ‘Okay, hospital’. And Mum said, ‘Well, she’s got private health cover, so it’s going to be a private hospital.’ So then I came back home to sleep the night, and then the next morning Mum and Dad took 44

me to hospital, and I was crying and crying, and I didn’t know what to expect. But I got there, and it was grouse. Everyone’s going through what you’re going through, so if you cry, no one goes ‘Oh here she goes again’. Everyone just gets it. And the thing with hospital is that you feel so safe. You feel so safe that you’re scared of leaving. The hospital I go to has great food too. Smorgasbord dinners, afternoon tea, and this thing called Fat Fridays with hot jam doughnuts for morning tea. I love that. My best friend, who has schizophrenia too, he visited me every week and rang every day. He’s so loyal and caring. I can be totally psychotic, and he’ll stick right by me. I’ve never had a friend like that, ever. I’ve never had a friend like that. I’ve read somewhere that people with mental illness are the most resilient people in the community, and I think it’s true because you’ve got to keep going. Even when you’re well there’s always that little bit of uncertainty, like ‘Will I be in hospital tomorrow? Will I be suicidal tonight?’ Things can change so fast, and you can find yourself in the most unexpected places. Psychotic episodes are very scary too because you always wonder will it tip over into the suicidal part. But you’ve got to get up and keep going.

That’s why education is such a wonderful thing because no matter how sick you get, no one can take your qualifications away from you. I could be locked up in a psych ward my whole life, but I’ll still be a teacher of the deaf. I’ll still be an interpreter. I’ll still have my Masters degree. I learnt sign language when I was at school because the deaf kids there were kind of outcasts too, and I bonded with them. I did Auslan (Australian Sign Language) as a VCE subject and came second in Victoria — I was really stoked about that. (I beat a lot of deaf kids too!) And now I’m finishing off my Masters of Deaf Education. I’ve done primary and childhood teaching, and a Diploma of Interpreting Sign Language, and this is my tenth year of University. My studies can be a bit up and down and all over the place if I get sick, but I get a lot of help from the Disability Liaison Unit. They’ve been fantastic; I get special exam considerations, like a room by myself with a computer. And I get extensions on work if I need it and private tutoring from teachers if I miss classes. Sitting in lectures for long periods of time is difficult because the medication can make me all jittery, and then I’ll get annoyed with myself for being jittery, and then I’ll forget what the teacher’s been saying, and then I’ll get upset because I forget what the teacher’s been saying, and then

(

I start seeing things. Like during one lecture, it was so funny: the lecturer was out the front of the class, and she’s talking with an overhead, and suddenly, all these rats are running up her legs and running all over the room and up my arms and everything, and up my body. So I walked out, and the teacher followed me because she could see something was wrong. And she said, ‘Are you okay?’ And I said, ‘I think I need to go home.’ And she said, ‘Why?’ And I said, ‘Well let me put it this way, there aren’t rats running in the room everywhere are there?’ And so she goes, ‘Right. I think you had better go home now. Do you want me to call your mum first?’ I’m really lucky because most of the time, unless I’m too sick, I have this thing called ‘second insight’. That means when I’m sick, I know I’m sick. (Like seeing the rats). It means I can tell people what’s going on. I have friends who have mental illness, and I have friends who don’t have mental illness. I have friends who are deaf, and I have friends who are hearing, but the people I get along with most are people from my social group at the Mental Illness Fellowship because they just understand me. If I get psychotic or act weird, they get it. Like I’m a very sociable person really, but I can’t go to nightclubs or rock concerts or things like football matches. It’s all the clapping, and waving, and bright colours, and noise. So if you go out

I’ve read somewhere that people with mental illness are the most resilient people in the community and I think it’s true because you’ve got to keep going. Even when you’re well there’s always that little bit of uncertainty, like ‘Will I be in hospital tomorrow? Will I be suicidal tonight? ’

) 45

(

) 45

(

Just because I have a mental illness doesn’t mean I should be treated differently. I’m still a person. I always say, ‘I’m not schizophrenic, I have schizophrenia.’

somewhere with friends with schizophrenia and you say, ‘Oh this is a bit noisy for me’, they’ll say, ‘Oh I’m glad you said that! Me too.’ But if you were to say that to a person without mental illness, they might kind of look at you and go, ‘Come on, this is cool fun. We want to stay.’ Sometimes, once you tell someone that you have schizophrenia, they start to look at you differently. I can’t explain it. It’s just a look in their eyes, and they look at you and talk to you differently than they had before. And I don’t like that. Other people will mollycoddle you, and I don’t like that either. Just because I have a mental illness doesn’t mean I should be treated differently. I’m still a person. I always say, ‘I’m not schizophrenic, I have schizophrenia.’ The people I like best are the ones who come up and say, ‘Tell me about your illness, I want to learn more.’ On of the reasons I’ve kept studying, I think, is because I wanted to show other people with mental illness that it could be done and that having a mental illness doesn’t mean you’re dumb. You can still achieve things. Lots of people I know are not working because their families have said, ‘Oh okay, you have a mental illness so you can stay home. We’ll just look after you.’ I know people who are forty years old and have never worked 46

)

a day in their life, and I don’t think that’s good. My mum has always said. ‘Never use your illness as an excuse’, and I’ve always taken that on board. It’s taken me years and years to find work that’s really suitable for me. I’ve had about fifty jobs in my life because I find work really, really hard. People expect things of you, and I can’t do the long hours because I don’t have the attention span. And I get tired very easily because of the medication. I tried my hand at teaching at a school for the deaf, and I’ve tried nannying and childcare. My very first job was waitressing, but I found the beeps from the kitchen sent me psychotic, and I even tried working at McDonalds, but there was too much action. The job I’m doing now is shift work that starts late, and I get a rest in the middle. I’m a direct care worker, and I have mainly deaf clients: I help deaf and autistic children, and I clean elderly people’s house, things like that. I love that job. It suits me down to the ground and leaves me time to study. I’ve only had two big romantic relationships. I still kind of think of my first boyfriend as the love of my life, but it was too hard for him. I have enough trouble coping with myself but to expect someone else to cope with me? Every girl dreams of getting married, and having kids, and getting their own

house, and things like that, but I’m getting to the point in my life where maybe I’m giving up on that dream a little bit. Because in relationships there’s always ups and downs, and every time I hit one of those downs, I get sick. I’m a handful. Mum always says not to give up hope, and she reminds me that we have friends who didn’t meet the love of their lives until they were forty. So I never say, never. But even if I did meet that special person, would we have kids? Would I put children through all that? I’ve always had it all planned out: I’d have a boy first, and he’ll be called Jarvis Daley, and then a girl called Rhiannon May, and then a boy called Max. Yes, I’d love kids. But if I think about it, how would I cope with babies? Sometimes you have to stay up all night for them. My brother was asthmatic, and my mother would stay up night after night. I can’t even stay up later that 8:30 some nights or I get sick. I’ve never met someone who has kids and who has schizophrenia. But you never know; the unexpected can happen. A lot of people didn’t think I would finish my Masters, and a lot of people didn’t think I’d finish my teaching degree, and there’s so many things that I just love proving people wrong in. Maybe I’ll marry a lawyer or a doctor or something, and we can hire a nanny! You learn to live with schizophrenia. And appreciate things. You just have to look forward. When you’re sick, you don’t think, ‘Oh I’m sick again.’ You just think, ‘I need to get better.’ I asked the doctor if he thought I would ever have a really well period when I don’t need medication, and he said, ‘No. I think you’ll be on medication for the rest of your life.’ But if that’s what I have to do to be healthy and sane, you know, that’s what I do.

(

A lot of people didn’t think I would finish my Masters, and… my teaching degree, and there’s so many things that I just love proving people wrong in.

)

You’ve just got to look forward. You don’t look back. 47

(

Just because I have a mental illness doesn’t mean I should be treated differently. I’m still a person. I always say, ‘I’m not schizophrenic, I have schizophrenia.’

)

(

A lot of people didn’t think I would finish my Masters, and… my teaching degree, and there’s so many things that I just love proving people wrong in.

)

You’ve just got to look forward. You don’t look back. 47

Acknowledgements

For more information and support

Project management

Writer’s note Moya Sayer-Jones

Jenny Tear Caitlin Lang Kathryn Humphries Sophie Schultz

Concept and production

Writer Moya Sayer-Jones

These stories have been created from my conversations with people who are living with schizophrenia and with family members who love and support them. The stories are written in their own words, edited from direct transcriptions. I have tried to re-create the spirit of our meetings, the generosity and the candour, but practical considerations means these are distillations of the range and complexity of the issues discussed.

Design Clive Jones www.onlyhuman.com.au

Email: info@sane.org Tel: 03 9682 5933 Fax: 03 9682 5944 SANE Helpline Tel: 1800 18 SANE Email: helpline@sane.org

I was welcomed into homes and trusted with very personal insights and memories, and my hope is that these stories convey, at least in part, the amazing resilience, intelligence and great humour that I found.

Schizophrenia Fellowship of NSW Locked Bag 5014 Gladesville NSW 1675 Bldg 37, Gladesville Hospital, Victoria Road Gladesville NSW 2111 Tel: 02 9879 2600 Fax: 02 9879 2699 Web: www.sfnsw.org.au

Humans have always used stories to understand each other and empathise. And to hand down knowledge and help create change. And I thank all the storytellers for keeping this tradition alive.

Photography Dean Golja (Thanks to the Powerhouse museum in Sydney and Monsalvat in Melbourne for use of locations.)

PO Box 226 South Melbourne Victoria 3205

Mental Health Council of Australia (MHCA)

Special thanks Rob Ramjen (Schizophrenia Fellowship NSW) and Gerard Reed (Mental Illness Fellowship Vic) provided generous and invaluable assistance through all stages of this project.

ALIA House, 1st Floor 9-11 Napier Close, Deakin ACT 2600 Tel: 02 6285 3100 Email: admin@mhca.org.au

ON FIRE ! Nickolas Yu PO Box 263 Coogee NSW 2034 www.sfnsw.org.au — type in search word ON FIRE

Web: www.mhca.org.au

Acknowledgements

For more information and support

Project management

Writer’s note Moya Sayer-Jones

Jenny Tear Caitlin Lang Kathryn Humphries Sophie Schultz

Concept and production

Writer Moya Sayer-Jones

Design Clive Jones www.onlyhuman.com.au

Email: info@sane.org Tel: 03 9682 5933 Fax: 03 9682 5944 SANE Helpline Tel: 1800 18 SANE Email: helpline@sane.org

Schizophrenia Fellowship of NSW Locked Bag 5014 Gladesville NSW 1675 Bldg 37, Gladesville Hospital, Victoria Road Gladesville NSW 2111 Tel: 02 9879 2600 Fax: 02 9879 2699 Web: www.sfnsw.org.au

Humans have always used stories to understand each other and empathise. And to hand down knowledge and help create change. And I thank all the storytellers for keeping this tradition alive.

Photography Dean Golja (Thanks to the Powerhouse museum in Sydney and Monsalvat in Melbourne for use of locations.)

PO Box 226 South Melbourne Victoria 3205

Mental Health Council of Australia (MHCA)

Special thanks Rob Ramjen (Schizophrenia Fellowship NSW) and Gerard Reed (Mental Illness Fellowship Vic) provided generous and invaluable assistance through all stages of this project.

ALIA House, 1st Floor 9-11 Napier Close, Deakin ACT 2600 Tel: 02 6285 3100 Email: admin@mhca.org.au

ON FIRE ! Nickolas Yu PO Box 263 Coogee NSW 2034 www.sfnsw.org.au — type in search word ON FIRE

Web: www.mhca.org.au

For more information and support

NSW

TAS

Schizophrenia Fellowship of NSW

Association of Relatives and Friends of the Mentally Ill

Locked Bag 5014 Gladesville NSW 1675

34 Howick Street Launceston Tasmania 7250

Bldg 37, Gladesville Hospital, Victoria Road Gladesville NSW 2111

Tel:

Tel: 02 9879 2600 Fax: 02 9879 2699 Web: www.sfnsw.org.au

VIC Mental Illness Fellowship Victoria PO Box 359 Clifton Hill Victoria 3068

03 6331 4486

Mental Illness Fellowship of South Australia Inc PO Box 310 Marleston SA 5033 Tel: 08 8221 5160 Fax: 08 8221 5159 Web: www.mifsa.org.au

276 Heidelberg Road Fairfield Victoria 3078

Tel: 03 8486 4200 Fax: 03 8486 4265 Web: www.mifellowship.org

PO Box 8422 Perth Business Centre WA 6489

Mental Illness Fellowship of Western Australia Inc

110 Edward St, Perth 6000 QLD Mental Illness Fellowship of North Queensland Inc PO Box 979 Hyde Park Queensland 4812 159 Kings Street Pimlico Townsville Queensland Tel: 07 4725 3664 Fax: 07 4725 3819 Web: www.mifnq.org.au Schizophrenia Fellowship Queensland Inc 95 Arthur Street Fortitude Valley Queensland 4006 Tel: 07 3358 4424 Fax: 07 3254 1770 Web: www.sfq.org.au

Tel: 08 9228 0200 Fax: 08 9228 0022 Web: new website coming soon ACT Mental Illness Fellowship of ACT Inc Oâ&#x20AC;&#x2122;Connor ACT 2602 Tel: 02 6205 1349 Fax: 02 6205 1293 Web: www.csf.org.au NT Mental Health Carers NT (Formerly NT ARAFMI) P0 Box 40556 Casuarina NT 0811 Tel: 08 8948 1051 Fax: 08 8948 2473 Web: www.ntarafmi.org.au