Written by Stephen Lunn, The Weekend Australian Magazine June 20-21 2009
Allan Fels, 67, former chairman of the ACCC, helps his daughter Isabella Fels, 37, cope with schizophrenia. They talk to Stephen Lunn about bonding over books, Diet Coke and cheesy films.
The first serious psychotic attack was in 1996 when Isabella was 25. It came on quickly and was very frightening, for her and us. She was hearing gunshots and hallucinating about monsters attacking her. She was taken to hospital and diagnosed almost instantly with schizophrenia. She stayed two or three months. My wife and I worried about Isabella, the elder of our two daughters, from the start. Hers was such a troubled childhood. She found it hard to form friendships or relate to people of her age; kids saw her as strange. On many occasions we asked her psychiatrists about schizophrenia. Each time we were met with denials, the last only recently before her attack. Psychiatrists usually told us Isabella’s problem was she was still living at home in her mid-20s.
The attack itself may have been triggered by the stress of trying to finish her arts degree. It was both horrible and a relief, in equal parts. It was extremely upsetting to hear my daughter had a lifelong condition, but there was some consolation in finally knowing what she faced.
Isabella’s life shouldn’t be defined by her schizophrenia, though. I’m thinking of our shared weakness, a love of books and bookshops. We spend hours together in Readings, Borders, little second-hand places in Melbourne’s Chapel Street. Isabella especially likes crime thrillers – Nicci French and Patricia Cornwell. Its interesting they often feature slightly obsessive characters. We amble through, discussing what books to buy. I remind her not to judge a book by its cover. We see films together, too. Isabella chooses most times and as a result I have a fair degree of expertise in teen comedies. Mind you, I shouldn’t pass judgment. I sit there and do the economics of the film, estimating the star’s fee, what the production costs were likely to be, the potential box office based on the opening weekend.
Six years ago Isabella had a second serious psychotic episode, after she changed medicines. The anti-psychotic drugs she’d used since 1996 were having serious side-effects and the doctors decided it was time to try something else. The new drugs triggered a terrible attack. She was certified and hospitalised. She was under the continuous illusion she was singing in a contest on television. It went on for weeks and we worried we would never get her back. The doctors tried a series of drugs, all of which failed. Then they went to their last resort electric shock therapy. Four sessions. Sitting around waiting to see if there was any change was incredibly difficult. The shock therapy did snap her out of the distressful psychosis but her level of day-to-day functioning went down after the episode, and for several years she lived in the continuing care unit of the Alfred Hospital.She recently graduated to a program where she needs less care and supervision.
In the past few years Isabella has taken to writing – prose and poetry.
She has been published in several places including Eureka Street, The Big Issue and Positive Words.
She writes about her illness, among other things, and reading it I can learn quite a lot about what is going through her mind. I once gave a talk about families coping with mental illness and I read a couple of her poems to the audience. There was a huge response and Isabella was there to see it. She was so proud, as was I.
I was really off the planet during that time when I was 26. It built up. I was spending heaps of money; my mobile phone bill was out of control. Then I started to hear gunshots and see things. Getting into hospital and on to medication got me under control and stopped me spending more time somewhere much worse. Dad was there all the time, which was great. Everyone loved him at the hospital. He’d sneak out into the courtyard for a puff of a cigarette, even though he’s not a smoker. It was in hospital that I was finally treated by the right psychiatrist. Dad found him for me and I’ve been seeing him for 12 years now.
School was pretty hard for me, but Dad was always there as a shoulder to lean on if girls didn’t want to be my friend, or would drop me. He was also very positive about my schoolwork and that really kept me going through school.
Dad and I do have the best time together. Weekends especially are terrific. We’ll browse around a bookshop. We’ll have coffee or a Diet Coke, which we are both crazy about. He says he’s never seen a thin person drink diet cola and if I were to give up Diet Coke shares in Coca-Cola would drastically go down. We also walk in the Botanic Gardens, where I can air out my problems. He’s a great listener. I’ve taken Dad to see some terrible movies; he’s been a really good sport about it. Home Alone, Back to the Future, ET, anything with Julia Roberts. And he got me back into reading when I came out of hospital. When I was very sick I couldn’t read so he’d read to me. And he’s bought me so many books over the years. He says I have a Library of Congress in my room.
My episode in 2003 was just awful. I was just completely mad; I didn’t know who was who or what was what. I was seeing things. I could still recognise my parents, but I thought cleaners and other patients were people from school and former boyfriends. I remember the electric shock therapy. I even remember seeing the sparks. It seemed dramatic at the time but I think I needed it. At that time I was certified. It had to be done; nothing else was working for me.
Dad’s encouraged me with my writing, and I’ve now had poetry published in a number of places. It’s really hard getting started, but once I get going and work on it, it does help me forget about my problems. When I’ve written something new I can’t wait to show it to my parents; that really keeps me going. I sometimes write about Dad. This one was in Eureka Street:
I watch him listening to me
Head to one side
Ears pinned back
His shoulders ready to steady me
See how he cares for me
Deeply as the sea
He understands me like a book he’ll
Never have to read