"My sister has schizophrenia"

There are many people with schizophrenia who accomplish amazing things and who would be considered incredibly high achievers with or without the illness. My sister isn’t one of them. Like many people with schizophrenia she plateaued out and has lived slightly outside the mainstream every since, never accomplishing the stratospheric heights expected of her when she was accepted into the conservatorium of music at only 16.

My sister has been largely asymptomatic of psychotic symptoms for many years, thanks to a combination of a stable relationship with her boyfriend (who also has schizophrenia), good enough housing, clozapine, and a fragile network of four siblings, who are at least intimate enough to care for and occasionally annoy each other. She no longer inhabits that paranoid, bizarre and impenetrable world of her early twenties, when she had 6 involuntary psychiatric admissions, each an awful, bewildering chapter, for her (and for us), but even at her best, there remains a residue of those times and that behavior.

She will often stop mid-step in an agonised dilemma as to whether, or how, to proceed with the next step on the pavement towards a shared destination.  I know there is some other context going on for her that I am not privy to, but sometimes, when we need to make the post office before it shuts, I know it’s terrible of me to say so, but it really is just VERY ANNOYING.

Or there’s the phone thing.. she will never, ever, put the receiver down first at the conclusion of a conversation; and once I realised this,  and because I too can be a little annoying, we both stay connected, often for VERY LONG TIMES.

And of course, a lot of what I term ‘annoying behaviour’ is actually just the behaviour of any person trying to finance a pokie, nicotine and alcohol regime on a disability support pension, more out of utter boredom than actual addiction. She is a completely lovable and shrewd operator, a consummate survivor.  It’s the behaviour of someone who essentially lost the confidence to believe she could manage in a more mainstream world, and actually seems pretty content in the world she now lives.  She still always manages to buy a new skirt. She and her partner cook a roast every Sunday. They grow tomatoes. They have friends. They get a special deal at the video shop. It is a small world, but it is their world, and they manage.

It always strikes me as a great irony that when she was younger, desperately unwell and completely without insight, we implored her to acknowledge her limitations and accept that she had an illness… and now that she is in remission, we are always on her back to register with a supported employment agency or enrol in a short course.  Her response, with great drama and authority, is inevitably something along the lines of “I can’t work. I’ve got a mental illness. You don’t know what it’s like!” Hard to argue.

Or the other one ‘Dee, you don’t know what it’s like, some days I just don’t want to get out of bed’.

Me either, sis, me either.

Most of us, if we have not experienced it ourselves, can at least imagine our way into a high prevalence disorder. You cannot open a magazine or newspaper without reading an article about a celebrity or sports star sharing their battle with depression or anxiety. Depression in the new millennium is like leg-warmers in the eighties. Thanks to Jeff Kennett most people would be aware of Beyond Blue (and the apparent importance of heterosexuality in attaining optimum mental health!). Even Bipolar with the saucy ‘increased libido’ of the mania criteria makes everyone a bit nervous and excited.  Much has been achieved in raising the profile and removing the stigma from mood disorders.  But I don’t see many people putting up their hands to say they have schizophrenia. Could you imagine having a quiet conversation with your boss at work ‘look mate, sorry if I’ve been a bit off my game of late, I’ve been feeling a bit psychotic. , I’m sure will all come right eventually, usually does, but yeah, just thought I should mention it…”

My sister had been unwell for years before she got treated for the illness she had. Nobody knew, because it wasn’t what we were looking for, because it wasn’t on our radar, and because funding for public mental health is such that services often don’t kick in until the illness becomes a crisis. And it is that crises, that period of life where it seems all bets are off and the maps make no sense and it is just a vortex of loss and confusion, which takes such a toll on the person with schizophrenia, and on their families.

And the way in which the broader system is organised and resourced to manage an acute psychiatric crises is such that, tragically and ironically, the trauma which so many sufferers of schizophrenia have already endured in their personal histories, will often get played out again.

My sister’s first admission, at the age of nineteen, was to Victoria’s (now closed) Laurandal hospital. She seemed the youngest person there, an anorexic bird of a thing, who had spent the last year meditating and quietly going crazy in the serene atmosphere of an inner city ashram.  She was brought in by the police against her will, drugged till the eyes rolled back in her head and she couldn’t answer her own name, her shoelaces and wallet taken off her and left in a room with no windows and no furniture where she sobbed on the floor and waited for her Guru to hatch an elaborate escape plan.

When my sister was eventually allowed out into the purgatory of a ward, large middle age men with no teeth and smelly clothes leered at her and a woman with tattoos on her face screamed at her to tell her where her baby was. Visiting my sister was terrifying. I can’t imagine what she must have been feeling.

But I wonder if she had stopped feeling anything.  A year since,  both our parents had died within nine months of each other and really, the last ten years before that was your classic Irish alcoholic  nuclear family turned cosmic train wreck, from whichever angle you looked at it.  The ruptures were epic, and often.  There was no safe ground underfoot. I think of that sometimes when my sister literally stops mid step, like she can’t possibly go on; like the decision of where to place the next footfall might actually kill her.

Let’s hope that trauma informed practice leads to more enlightened ways of dealing with psychiatric crises. The medical model only goes so far.  We are our histories and not just our biology’s.

Last time my sister visited I saw her approach from a distance and she seemed to be talking to herself in an absorbed and animated manner. My heart lurched into that ‘uh oh here we go’ place; the place of fear and chaos, the bedfellows of a psychotic episode.  But when she got closer she recognized me, took her IPOD earplugs out of her ears,  stopped singing along to Brittney Spears, smiled warmly and said ‘Hi Dee, can I borrow some money”?

She is in the race along with the rest of us.

I feel lucky that she is as well as she is.

Listen to Dee discuss this further on Mamamia on Sky News:

Dee Madigan is a panelist on the Gruen Transfer as well as a political commentator. She is also Ambassador of the Schizophrenia Research Institute.