It is regrettable that almost all the information that people get about schizophrenia occurs when someone with this disease commits a violent act. And most perpetrators, if not all, are untreated. It is now coming out that James Holmes, the alleged Colorado shooter, had been seeing a psychiatrist who specializes in schizophrenia. No one knows his diagnosis, if there is one, but he seems to have all the hallmarks of someone with active psychosis.
The tragedy of Colorado and all the other similar events that have taken place (Virginia Tech, Arizona, etc.) maybe could have been prevented with greater understanding of mental illness and good treatment which, while far from perfect, do exist.
Aside from the pain to those directly affected by these violent events, there is the embarrassment and continued stigmatization to those with treated schizophrenia who are doing well and to their families. Until society begins to deal with serious mental illness in a more rational way, these events will continue and little progress will be made.
A few years ago, I wrote my book on Schizophrenia, subtitled "Medicine's mystery, society's shame", with the hope that I could provide some explanation of the disease and its impact upon society at large. A little delusional perhaps but that was my intent. One chapter dealt with the ugly, the bad and the good to exemplify the current diagnostic and treatment problems.
The ugly was the story of a young man whose family desperately tried to get help for him from the health care system. They could not because the helping professions did not recognize his illness. Despite his displaying many of the symptoms of schizophrenia, his parents were stunned when they were told by a social worker that he had bad behaviour and needed to get a job. The family doctor refused to refer him to a first-episode psychosis clinic even though staff at the clinic had told his parents that he was someone they needed to see but that a referral was required. To cut to the chase, the young man murdered both his parents thinking that their bodies had been taken over by someone else.
That was when he was diagnosed with schizophrenia, found not criminally responsible due to a mental illness and sent to a forensic psychiatric unit. I just met him for the first time earlier in July at a lecture and didn't realize who he was until he was introduced to me. He is, today, a normal looking and acting individual. Had the health professionals been more attuned to what they were being told by the family, he might have been diagnosed and treated before any of that happened.
But then, as Susan Inman writes in her book,After Her Brain Broke: Helping My Daughter Recover Her Sanity, many of the health professionals like social workers, counsellors and even family doctors, are not familiar with serious mental illnesses so how can they possibly recognize it? And many of them still believe that the family is responsible and that pharmaceutical intervention is not needed.
As an example, the executive director, a social worker, of the Family Outreach and Response Program in Toronto writes the "medical model of mental health distress ... has led to extreme over-reliance on psychiatric medications and coercive mental health legislation" and that ".... recovery is possible even without any professional intervention."
And how many times have I heard from those in the mental health field that schizophrenia is often the result of early trauma, family dysfunction ... and the list goes on despite all the neuroscience evidence that this is a disease of the brain as I've written before. But, like other diseases, if it is not recognized and treated then there are tragic consequences for the person with the disease and often for society. People who are delusional and out of touch with reality, and who do not recognize that they are ill, pose a potential danger to themselves and to society.
People who are HIV positive and who have still gone ahead and had unprotected sex without telling their partners, are prosecuted. A German singer was prosecuted for just that very thing. A Hamilton man was declared a dangerous offender for having unprotected sex with two women who died of AIDS.
People with uncontrolled epilepsy are not allowed to drive in case they have a seizure while driving. School districts insist that students be inoculated against infectious diseases before being allowed to attend school. In fact, many diseases previously almost eradicated such as measles are reappearing partly due to the refusal of some to be vaccinated. As someone who grew up with polio epidemics, returning to school to learn how many classmates did not make it, I can attest to the efficacy of inoculations.
Going back to my book, I also wrote of a man who eventually had a good outcome but only because he was sentenced to treatment by a judge. This person is now retired but spent over a dozen years untreated, homeless and alcoholic. When his treatment became successful thanks to medication, he was able to work part time at a well known Ontario psychiatric treatment facility. I quoted him in my book saying that "I have permanent (brain) damage that I must live with because I was not treated in the first six months. It is something that I think about every day, something that I have to re-accept every morning."
Some of the successes that we rarely hear about are people like Sandra Yuen MacKay of Vancouver. Because of her struggles and help from doctors who treated her, she completed a university course, is a writer, author and advocate for improvements to the current system. She wrote My Schizophrenic Life: The Road to Recovery From Mental Illness and, earlier this year, was awarded the Courage to Come Back Award For Mental Illness in British Columbia for 2012.
Dr. Carolyn Dobbins is a Knoxville psychotherapist who almost made the U.S. Olympic Ski Team at Lake Placid but she developed schizo-affective disorder and didn't get there. Despite her struggles that included time in jail and in hospitals, she obtained a PhD in clinical psychology from Vanderbilt and worked as a therapist for 25 years before she admitted publicly that she has a serious mental Illness.
She is the author of What A Life Can Be: One Therapist's Take on Schizo-Affective Disorder and in July, was recognized by the Disability Resource Center in Knoxville with the Spirit of ADA Award for being "a person whose life exemplifies the spirit of the ADA (the Americans With Disabilities Act). This person has overcome physical and attitudinal barriers, recognized as an empowered individual in our community and an inspiration to other people."
And I must mention Erin Hawkes, a neuroscienctist at the University of British Columbia whose book When Quietness Came: A Neuroscientist's Personal Journey with Schizophrenia was published recently. Erin knows only too well how important treatment can be even if, when ill, the person does not realize they are ill and so refuses help. She wrote a recent op ed piece in the National Post in which she argued that forced medication saved her life. She then wrote a piece in The Tyee thanking those who medicated her.
Note that James Holmes in Colorado was also a PhD student in neuroscience. While I have no idea about his journey, I do think it is an interesting contrast.
Both society and those who pose a potential danger to society and, at the very least, to themselves, deserve to have their illnesses recognized early and to receive proper treatment. If it has to be involuntary at first then so be it provided there are proper protections.
We are all waiting for the Mental Health Commission of Canada to release their report on involuntary treatment and hoping that it is sensible. I do not work for nor do I get money from the pharmaceutical industry. But, like other relatives of someone with a serious mental illnesses, I see the consequences when the medication is reduced or stops being effective and needs adjustment.