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.
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, [thought ‘Mum’s weird, and I don’t know why’. I know now that she was floridly psychotic. She remained unmedicated, in terms of schizophrenia, for five years. That’s five years with no health visits, no contact with mental health services. Absolutely nothing.
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 be 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?
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,
Moore Park Recreational Centre was close to where we lived in Surry Hills. I would take my 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.
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 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 l went back to school, and I sat my HSC the next year. I think 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 h ad 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 self employment 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.
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 I 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 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 that we’re doing well; we’re doing as well as we can, and we deserve to be proud of that.
About ten 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 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 onto 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 provide our insurance, they do our accounting for us, and they provide a whole support umbrella that organisations 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.
© Moya Sayer-Jones 2007