JOE WAS AFRAID to leave the house, apart from the "daycare" he attended at a mental health facility halfway across the city a couple of times a week, when his mother managed to get him on to the public bus.
Joe's mother was often afraid to let him leave the house. When he was really sick, Joe thought that the TV was talking to him personally in a code that only he could understand. There was an international conspiracy, with Joe at its centre, so that only he could save the world. Even the newspapers contained this code. The voices in his head told him where to look.
His mother confided in me that she was terrified Joe would hurt someone, and even more concerned that he would harm himself. It was all she could do to make sure he kept taking his medication because when he did, Joe returned to something like sanity.
Living with Joe was like walking on eggshells and his mother didn't know how much longer she could cope.
Joe hated living with his mother and had quite a few eggshell moments himself. He might have had schizophrenia, but he was also a young man in his early 20s. From both their points of view, the situation was unsatisfactory, but nobody seemed to understand.
It is 20 years ago now since I spoke to Joe and his mother for a series of articles I wrote for this newspaper, but listening to Liveline callers last week I couldn't help remembering them. Because, it seems, nothing has changed.
The callers' harrowing accounts of living with extremely ill family members were in response to a news report about a man with schizophrenia who had killed his uncle (effectively his carer, as the two men were sharing a house).
I read the reports too, and they made me feel sick for several reasons, one being the way in which the killer's mental confusion was laid out like a flayed corpse for us to mull over in ghastly fascination.
What worried me most, though, was that schizophrenia was once again being associated with violence and murder when, in fact, a person living with schizophrenia is far less likely than the "average" person to kill somebody. Can you imagine being told that you have cancer, and that - by the way - your disease will also make you a social pariah? It must feel awful to be living successfully with schizophrenia and then to realise, once again, that one rare case of violence by someone else is tarring you with the same brush.
It is also sickening that the "care in the community" concept is failing in some cases. In the bad old days, we used to lock people up and throw away the key. St Brendan's Hospital, in Grangegorman, Dublin, where I spent some time as a journalist meeting psychiatrists and talking with patients, was no resort spa. A high-ceilinged Victorian institution with row upon row of patients in beds, it was certainly unaesthetic. And yet, at its best, St Brendan's offered people something that couldn't be had in the outside world: safety, compassion, a place to be themselves.
In the 1980s, the old stone buildings, the isolation cells and the sheer coldness of such institutions seemed to symbolise the insanity of locking people up. There's no doubt that there were thousands of people incarcerated, medicated and institutionalised who should not have been. But did we throw the baby out with the bath-water when we decided that every person with an exceptionally severe form of mental illness must live in the community?
What is "community" anyway? The society that you and I cope with every day is stressful enough. Imagine having to deal with it when you have the added burden of a mental disorder. Most of us cope by creating our own personal oases of safety - our semi-ds, our cars, our little families, our self-rewards such as holidays - but what must it be like to have to make your way without this kind of reassurance because you can't get a job, never mind a spouse and a house? To be "locked up" mentally with medication and told, basically, that you will have to live the rest of your life dependent on social welfare, on an under-funded psychiatric system and on a compassionate relative?
I'm wondering if we need to look again at the concept of asylum, not as in horrendous granite structures that cage people, but as in a new kind of house-and-garden asylum with sports facilities and creative activities and room to grow. We should give extremely distressed people asylum in the way that we grant people from war-torn countries asylum. The utopian idea that all mentally ill people can be supported "in the community" is grand, but is it just too much for us to expect in all cases? What happens when there is no "community", or when "care in the community" is just a euphemism for the thinly veiled cheap option, for dumping people on relatives and hoping for the best?
We need to talk about this.
