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Over the past year since I published my memoir about caring for my brother Paul, who suffered from schizophrenia, I have encountered several misguided but firmly held beliefs that get in the way of understanding our fellow humans who suffer from a severe brain disorder. Here are just a few.
Probably the most common misconception is that if people with serious mental illness (SMI) would just take their medication, they would be all right. Unfortunately, this is not true. For 32 years, my brother was loaded up with thousands of pills and subjected to all sorts of talk therapies and counseling, and still he alternately thought he was James Bond, Clint Eastwood or a Mohican Indian (as in, the last of…). He was much worse when he went off his medication, but even on it, he could not hold a normal conversation.
Of people diagnosed with schizophrenia, about 25% never achieve any sort of meaningful recovery. About 25% have a couple of psychotic episodes but then recover completely. Inbetween, some people manage to make a life for themselves as long as they get good support from their family and community, others are in and out of hospitals. All of these people need our support in getting outpatient treatment and effective counseling and other assistance.
Back in the 1840s, reformers like Dorothea Dix worked hard to get the insane out of prisons and into caring psychiatric institutions. Since the 1950s and 1960s, and with the advent of modern psychotropic medications, though, the push has been to get everyone out of hospitals and into scattered housing in the community. Many people imagine mental hospitals as houses of horrors, and most of them have been closed.
Unfortunately not every patient with a serious brain disorder can make it in the community. They need lifetime housing and care. No one wants to go back to the days of hulking bedlams.
Many people with SMI – most of the 50% in the middle – can do quite well in their own apartment as long as they have support from social services. But we need to house the 25% – people like Paul – in supportive congregate housing, perhaps modeled on the assisted living facilities we have for elderly people with medical or cognitive issues. Those with SMI need a home where, with assistance, they can be the best they can be.
Alternatively, some people think there is nothing we can do for those who are most severely afflicted with SMI and we ought to “just lock ‘em up”. This extreme is also not true. Perhaps these people are behind the current trend of treating people with SMI as criminals. A very large percentage of our prison population suffers from some degree of mental illness, many of them seriously deluded. But the violence and punitive atmosphere there makes their symptoms worse.
During the last year of my brother’s life, he was the most lucid we had seen him in over 30 years. He was living in a pleasant nursing home where doctors and nurses made sure he got his medication, meals and snacks were served frequently, optimizing the effectiveness of the medication, and he had a warm bed in clean and cheerful surroundings. Paul’s coherence seems directly tied to how people around him treated him.
With pleasant aides and orderlies, he smiled and said hello to everyone and expressed thanks to me whenever I took him out or visited. I discovered he had a sweet and caring heart under all the babbling about the FBI and Mohican Indians being scalped, and I would hate to think of people hurting him unnecessarily. I am very thankful he never ended up in jail.
While doing research about schizophrenia, I discovered that it is genetic, but not inherited. How can that be? I always thought it ran in families. I my family, neither parent suffered from any serious mental illness, and only one of the ten children developed schizophrenia.
Scientists know almost nothing about mental illness for sure, but it appears that illnesses like schizophrenia come about due to the confluence of two factors – genetic predisposition and some serious stressors. There appears to be a spontaneous mutation at the time of the creation of the fertilized zygote which creates the predisposition. Yet studies of identical twins show if one develops SMI, there is only a 70% chance the identical twin will also develop it.
It’s not clear what how obvious the stressor has to be; it could range from poor nutrition in the mother during pregnancy to head trauma to drug usage. No one seems to know. According to the National Institute of Mental Health the percentage of people with schizophrenia is relatively constant at a little over 1% of the population, worldwide, so it is not due to any particular child rearing tradition or types of food.
When my brother first got sick, I didn’t know anyone else who had a serious mental illness. It was all very scary and confusing. Mental illness is all around us, but most people, myself included for many years, don’t feel comfortable talking about it.
But while promoting my book many people have come up to me at readings and told me about their aunt or uncle or cousin or the neighbor’s son… They tend to tell me about their family member or neighbor in a whisper, as if there was something to be ashamed of. Let me assure anyone reading this that there is no need to whisper. Nearly everyone has a family member or knows someone with SMI – there is no need to feel embarrassed.
Oh, and I should add a 6th point, and by far the most important thing I learned while on this journey. I realized while caring for my brother — really realized, on a gut level — that every person with serious mental illness, no matter how difficult or perhaps even scary, was someone’s baby once, someone’s brother or sister, or a cherished and loved niece or nephew. They were a person with hopes and dreams. And they still are.
Stats and figures taken from Surviving Schizophrenia: A Manual for Families, Consumers and Providers (4th Edition); E. Fuller Torrey
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