Tuesday, August 09, 2011 12:24:10 AM
Schizophrenia: A story of my father
By Douglas Todd 19 Apr 2009 COMMENTS(23) The Search
National Newspaper Award Winner in 2005 - Best Long Feature
Schizophrenia: As the realities become better understood, the stigma has lessened. But it hasn't disappeared
Vancouver Sun .. Saturday, December 4, 2004 .. Byline: Douglas Todd
My first memory of my father is meeting him behind bars. I was four years old and my mother and older brother and I were visiting him inside a high-security ward called Crease Clinic at Coquitlam's Riverview Mental Hospital.
The wide steel door to the ward was about 10 centimetres thick. The small windows were covered with grey prison bars. My dad, Harold, sat still in a corner of the dim, smoke-filled room, with about 20 other patients. They all looked beaten down, with hunched shoulders. Out of it.
My dad shuffled meekly over to us, and the wardens allowed us to take him out for three hours on a Sunday drive in my mother's black Ford, which had running boards. It was the late 1950s. Not a good time to have schizophrenia.
Why my dad was locked up was beyond me. I knew he was seriously sick and needed help. But he seemed utterly passive, about as threatening as the red-breasted robins that fed in the cherry tree of our east Vancouver home. Maybe the bars were there to stop the inmates from jumping out the fourth-storey windows.
Sunday drives with my dad became the weekly routine. We'd motor around, visit a park, throw rocks into a lake, go out for ice cream or lunch. My dad spoke in monosyllables, if at all. The expression "painfully boring" could have been created for these dutiful events. Still, my mother, Mary, brother Dave and I did the visits because my dad seemed to appreciate them. And his parents fully expected us to go.
I was at Sir Richard McBride elementary school, age six, when I first heard the put-down: "Mental."
A kid hurled the epithet at someone in the school yard. I realized then that whatever it was that was happening to my dad was not only horrible, it was something for which I should also feel ashamed. This produced silence.
I didn't consciously realize I was keeping the secret, though, until we had moved to Lynn Valley and I was 13. That's when my best friend, in talking to my mother, referred to my uncle, George, who shared our home with us, as my father.
I guess I had wanted it to look to people like I was in a normal nuclear family. But my mom said I had to tell the truth.
* * *
This is a story about how times have changed. And not changed.
It's about how the stigma against schizophrenia is gradually eroding; how mass culture, psychiatry and science are evolving to recognize the realities of schizophrenia, which strikes one out of every 100 people, or 300,000 Canadians. Eight per cent of all hospital beds in the country are filled by people with schizophrenia, more than sufferers of any other medical condition. It virtually always hits between age 15 and 25.
This is a story about how a 33-year-old Coquitlam married woman with schizophrenia, Renea Mohammed, has come to the point where she can now say: "When I first got the disease I thought my life was over. But it's really not the end of the world to have schizophrenia. You can still do a lot and have a good life."
Yet, it's also a story about how people with schizophrenia are still misunderstood, ostracized and unjustifiably feared as a source of violence. It's about how people with schizophrenia, as a group, might be more discriminated against that those with any other major disease.
How enlightened are we compared to the 1950s?
Just around the time I was born, my dad, who my mom always describes as a "a nice man," apparently started acting strangely.
Although he had been an ambulance driver in France in the Second World War, had many friends and an accounting degree from the University of B.C., he apparently wasn't working effectively at the MacMillan-Bloedel lumber company. Despite not being an executive, he was insisting on using the executive washroom. He was fired.
His parents didn't think anything was wrong with him, but my mother grew extremely anxious. Harold was often talking in a jumble. He was making strange arm gestures over my body as it lay in its crib, which made my mom worry he was going to slice me up. He would scare my mother by holding her throat and talking about how pretty it was. Eventually, he waved a knife threateningly at her.
That was it. My mom felt she had no choice. Calling the police was the only way, in those days, that an unwilling person with psychiatric illness could get treatment. It often still is today.
When the cops arrived at our Arbutus neighbourhood house to take my father away, my mom felt incredibly guilty. Maybe she'd been a bad wife. She could hardly bear her sadness as she watched Harold, at age 26, run down the street to escape the chasing police. He stayed in Riverview for about the next 15 years, where my mom said he was subjected to more than 120 electroshock treatments. To what end?
After the police caught my dad, Mom called her brother, my uncle George, to pick us up. We went to live with him and my grandmother in east Vancouver. Mom began working at Vulcan Automotive Equipment Ltd. as a secretary, remaining there the rest of her working life, bringing in the money to raise us. My grandparents eventually realized their son was ill and did everything they could to help.
Despite the stigma, other family and neighbours pitched in to support my mother and help raise my brother and me. Gratitude to them will always be eternal. It made our lives seem almost normal, if you don't count the Sunday visits to Riverview Mental Hospital.
In certain quarters, it seems the stigma surrounding schizophrenia has eased, largely through scientific advances in probing the roots of the devastating illness.
But the clouds of caution are still thick. Mohammed believes strongly in being open about her disease. Working as a counsellor with people who are mentally ill and serving as a director of The B.C. Humane Society, Mohammed says, "I don't have any shame or guilt about having schizophrenia. I think it's important for people who are doing well with schizophrenia to let people know about it."
Still, Mohammed said she's not sure she wants anyone in her Coquitlam apartment building to know she was diagnosed with schizophrenia when she was 26. And, despite her courage, Mohammed declined to have her photo taken for this article.
There are still only a few people with schizophrenia who are like Mohammed, who are willing to educate the world by telling their powerful life stories. Most people with schizophrenia are burdened by a debilitating lack of confidence, fear, disease-induced lethargy and often voices.
As well, self-protectiveness conspires to keep people with schizophrenia from getting the attention advocates think they deserve. Jane Duval, public policy director for the Schizophrenia Society of B.C., says the amount of money spent per patient on schizophrenia research still pales in comparison to other diseases.
Patients are also not getting adequate housing. Duval says more than than 83 per cent of the chronically homeless people in Canada are mentally ill, and the biggest group among them are schizophrenics. Even though large, often-depressing psychiatric institutions such as Riverview are being phased out, many of the troubled patients with schizophrenia who have been released into the community aren't able to find an appropriate place to live.
Why? Feeling stressed and stigmatized, most people with schizophrenia and their relatives choose to live, like some homosexuals, in "glass closets." They're not absolutely secretive, but they're not exactly "out," either. They're finding it hard to stand up for themselves.
I remember talking openly a few years ago to one of Canada's most famous scientists about his son's schizophrenia. The scientist, however, never wanted the fact to be reported in the media, out of concern for his son. Other well-known Canadians, including politicians and CEOs, have become associated with the cause of improving the plight of people with schizophrenia, but they rarely publicly admit it's in the family.
One of the high-profile exceptions, former B.C. premier Mike Harcourt, once quietly acknowledged to a journalist, for publication, that his brother has schizophrenia. But he's never openly made a cause out of it. Duval says many family members still don't even tell loved ones with schizophrenia that they have the disease, something she believes is a big mistake.
It seems that for every two steps forward since the bad old days, we've also slipped back one step.
In ancient times in the West, people who were schizophrenic were routinely thrown out of their homes and left on the streets, where they would live, and often die.
Through much of the 20th century, people with schizophrenia in North America were at least sent to institutions, but it was often so they'd be forgotten, sometimes never to be seen again. Families would tell neighbours their sons or daughters had moved to another city or even passed away. No one wanted the stigma; in part because few would marry into a family that included a "lunatic."
Even as the study of psychology expanded exponentially in the late 20th century, unfortunate theories and misconceptions abounded.
Until recently, academia and medical schools did more than their share to keep people with schizophrenia and their loved ones cowering and hidden.
In the 1970s, when I studied in B.C. and California and was approaching the fateful age of 26, the age at which my dad was struck by schizophrenia, I devoted a fair chunk time worrying if I'd get it too.
I also remember devouring the work of two of the most influential psychiatrists of the era, R.D. Laing and Thomas Szasz.
Reading Laing's classic book, The Politics of the Family, I, along with a few million other budding intellectuals, bought into his thesis that "Madness is a sane response to an insane world." Laing almost glorified schizophrenia. And what did he say made the mentally ill the way there were? Their screwed-up families.
Around the same time, Szasz was making his own theoretical blunder. Szasz maintained there is no such thing as mental illness. As Duval puts it, Szasz claimed schizophrenia was just patients' way "of opting out of society and responsibility and having other people look after them."
Meanwhile, on the more popular front, in the realm of entertainment, Hollywood has also been doing its bit to promote mass ignorance.
Remember Joanne Woodward and her many personalities in 1957's The Three Faces of Eve? She was said to have schizophrenia. It took me a while after that movie to learn schizophrenia has nothing to do with multiple personality disorder. Most schizophrenics, struck down by shyness and brain confusion, can barely maintain one personality.
Then there was Alfred Hitchcock's classic, Psycho. It's about a psychotic who stabs young women. How did Norman Bates become a slasher? "Of course, in the movie it's all his mother's fault," says Duval, whose son has schizophrenia. When her son began hearing voices, Duval says, "Doctors treated me like I was a bad mom, and told me to stay away from him."
Then Jim Carrey did his bit for global misinformation in 2000 by starring as a "schizophrenic" New Jersey police officer who flipped uncontrollably between niceness and demonic sadism in Me, Myself and Irene. The comedy had some funny moments, but its depiction of schizophrenia came from pop science la-la land; destructive stereotypes again.
The advocates of those with schizophrenia have long complained about such dead-wrong caricatures. But Duval said they also realize that raising a stink can be counter-productive because it can make advocates look like "crotchety people." Instead, many have learned to brush such films off as merely "derivative."
Despite its reckless track record on mental illness, Hollywood finally came through in 2001.
Millions of North Americans with schizophrenia and their families were celebrating when some of the realities of the disease were treated responsibly in Ron Howard's Oscar award-winning movie, A Beautiful Mind (poster left). It's based on the true story of how Nobel Laureate John Nash, a U.S. mathematician, dealt with full-blown paranoid schizophrenia, including hearing voices from space aliens.
A Beautiful Mind was the indirect result of the light that began shining on schizophrenia in the 1990s.
Scientific advances that shed light on the causes and treatment of psychosis began giving people with schizophrenia and those who want to assist them a sense of hope -- and helped lift the blanket of misplaced guilt.
One of the liveliest signs of this healthier approach to schizophrenia is a B.C. website called www.psychosissucks.ca, [link added .. http://www.psychosissucks.ca/epi/ .. ] inspired in part by Dr. Bill MacEwan, director of the schizophrenia program at the University of B.C.
www.psychosissucks.ca is refreshingly frank in the way it appeals to young people. They're the ones who most have to be aware of the early signs of psychosis, of which schizophrenia is the major manifestation (followed by bipolar disorder). "Psychosis is treatable. Recovery is expected," the web page declares.
www.psychosissucks.ca honestly faces touchy issues about schizophrenia's possible genetic links -- "the gift that keeps on giving," as MacEwan quips -- including that children or siblings of people with schizophrenia (like my brother and me) have a nine to 13 per cent chance of succumbing to it. But if you haven't got schizophrenia by age 30, you're almost surely not going to get it at all.
In helping set up several Greater Vancouver centres for early treatment of schizophrenia, MacEwan's work is on the cutting edge of recent developments. Quick detection greatly reduces schizophrenia's harm, because researchers now believe the longer one lives with untreated symptoms of psychosis, the more toxic it becomes at destroying brain tissue.
Through outreach efforts exemplified by www.psychosissucks.ca, health care workers are helping people educate themselves about the importance of spotting schizophrenia's earliest signs.
Early symptoms include social withdrawal, reduced concentration, depression, anxiety and suspiciousness (behaviors which can sometimes be confused with mere adolescent acting out). Later symptoms are often more severe, such as delusions of being followed, of having special powers or being plotted against.
As a result of such educational pushes, MacEwan says now, when a doctor, nurse, counsellor or RCMP officer deals with troubled youths, some are learning to gently ask: "By the way, have you been hearing voices?"
Mohammed experienced hallucinations for more than a year before she or others recognized what they were.
"I thought it was all real, so I didn't know I was ill." While finishing her last stressful year of a master's degree in librarianship at UBC, she would hear strangers walking by and talking about her. "It was always critical," she says.
Like many other people with schizophrenia, Mohammed is highly intelligent and was getting good marks. But she was becoming increasingly disorganized and late with everything. Her husband, whom she'd married a year earlier, urged her to get help. She did, and with increasingly sophisticated medication, was soon up and running again, contributing to society.
If schizophrenia is caught early enough and treated, many people will never again experience a second episode, MacEwan says. Many others will recover over a longer period. That's a remarkable change from the bad old days, when patients like my father could disappear forever into often-harsh institutions.
Such new and liberating approaches to schizophrenia have come about because more scientists and physicians have learned the value of "medicalizing" the illness.
"It's been huge," MacEwan says. "People no longer say schizophrenia is a behavioral problem. Or that it's caused by how you were brought up."
Schizophrenia is now primarily viewed as a biological brain disease -- a dysfunction in neurotransmitters, the "chemical messengers" of the brain. Some people may have a genetic predisposition to it, which can then be triggered by brain injury or street drugs (especially crystal meth), but perhaps also over-use of marijuana and alcohol.
Emotional links to schizophrenia have not been totally ignored, however. Depending on the degree of predisposition to schizrophrenia, researchers believe it could be also be triggered by stress -- by a death in the family or by moving to a new city, or as a result of constant conflict in the home. The old brutally simplistic cause of "bad parenting" has been put in a much larger context.
The scientific emphasis is now on schizophrenia as a treatable "cognitive deficit." Norwegian scientists such as Dr. Mereta Oie are advancing arguments that the bizarre thoughts and invisible voices associated with schizophrenia are not its key features. Oie maintains the focus of testing and treatment should be more on cognitive difficulties with memory loss, problem solving and decision-making.
The big bonus of "medicalizing" schizophrenia is that the burden of guilt has been lifting -- freeing people with schizophrenia, and their family and friends, to mobilize.
Since the early 1990s, they've been pressing for more government research spending. They've been attracting major private donors, creating effective public education programs and producing quality, readable publications, such as Canada's Schizophrenia Digest. They've made progress.
Since the stigma issue is far from dead, the B.C. Schizophrenia Association has been among those producing TV and radio ads, such as one called "Subtitled." It depicts a young man with schizophrenia telling his friends about the diagnosis. It reveals the friends being phoney with him -- telling him they will be supportive while subtitles reveal their real secret inner thought: "Stay away from my family!"
Mohammed says she is generally treated politely when she tells people she has schizophrenia, although she admits she doesn't know what people are actually thinking. She does, however, recall being clearly ostracized in her mid-20s when she showed schizophrenia's symptoms of paranoia, delusions and withdrawal.
Mohammed also had to deal with people's apparent fears she would be violent. But, as she says, she was like the vast majority of people with the illness. She just wanted to hide. She was too disorganized to be aggressive. Although a tiny proportion of people with schizophrenia do act out bouts of freakish violence that make the news, Mohammed says your chances of being attacked by someone with schizophrenia are less than the possibility of being attacked by someone without the disease.
UBC's MacEwan is among those helping patients and their families develop techniques to reduce stigmatization. One of them is highly practical: Encouraging patients to keep their hallucinations to themselves, or their immediate family.
"If your loved one comes home and tells you that he's George W. Bush's replacement, you tell him you disagree and then say, 'Please pass the butter.' You also suggest, 'Let's keep that thought here.'"
Although such approaches are proving effective, MacEwan is the first to admit discrimination against people with schizophrenia is still a big problem. "It's not an illness people run toward and say, 'I'd like to help,'" he says. "Most people run away."
Here are three other key areas where advocates for those with schizophrenia see signs of discrimination:
RESEARCH
There are twice as many people with schizophrenia as there are with Alzheimer's. Schizophrenia is also five times more common than multiple sclerosis, six times more common than diabetes, and 60 times as prevalent as muscular dystrophy.
The Canadian Schizophrenia Society says: "Schizophrenia is youth's greatest disabler. The human costs are impossible to measure. The social and economic costs to Canadian society are staggering. Treatment and support for Canadian victims of schizophrenia is estimated at $4.5 billion per year. Yet research finding is substantially lower than for any other major disease."
HOUSING
With institutions such as Riverview being shut down, and so many people with schizophrenia either homeless or unable to afford anything other than a Downtown Eastside hotel room, MacEwan and Duval are among those who say governments must make more options available. "It's going to be a real challenge," MacEwan says, to provide more boarding houses or healthy independent-living situations.
EMPLOYMENT
Many people with schizophrenia are skilled and smart, but prone to sometimes unpredictable behavior. As MacEwan says, they might tell someone at work to "f--- off" and then get fired. But their swearing is just a symptom of their disease, MacEwan says, in the same way that someone with heart problems clutches his chest. If a person with schizophrenia is terminated for acting inappropriately, MacEwan believes the government should allow them to claim for disability payments.
On these fronts and more, MacEwan says, there is still such a long way to go.
* * *
As an adult, I continued the tradition of Sunday visits with my father, although I certainly didn't do so every week, as I did when I was a child.
I'd take Harold to parks for walks, to baseball games, to restaurants and to the horse races, anything that would provide amusement or distraction. I occasionally asked my sons to come along, because their grandfather is a part of the family history.
I learned to have no expectations on these excursions and during Christmas visits. So, when my dad did say something, it would be a bonus. Occasionally, he'd talk about the Canucks or B.C. Lions or something in the news. His favorite TV show was Lawrence Welk, the same as his parents. During our visits he'd frequently smile or chuckle to himself, appreciating some inner joke that was a complete mystery to me.
After his many years at Riverview, he had been able to move out and live for a while with his parents, where we had gone to see him for Sunday dinners. As my grandparents became frail and eventually died, Harold ended up in a provincial government-run boarding houses in Kitsilano and Fairview. I'd bump into him regularly as he walked the neighbourhoods or visited libraries.
Although Harold looked "different," he was orderly, never smoked, rarely spoke, read Maclean's magazine and the rotating staff at his boarding houses generally saw him as easy to get along with, even a gentleman. After living for almost four decades in some institution or another, he had learned compliance. As he aged, his medications had been reduced to minute doses.
Then something happened that was remarkable, at least to me.
I was having lunch with Vancouver Sun colleagues at Picasso's Restaurant on Broadway in the mid-1990s, when I saw some art work on the wall. It was signed, "Harold Todd." Stunned, I said, "That's my father's name."
The Kitsilano Community Care team staff, it turned out, had convinced my dad to take an art workshop. Every week for a year or two he'd been painting his child-like, alluring patterns. He had even sold some. I have one in my study depicting a patchwork of look-alike homes (perhaps like the one my dad was never really able to live in). In a fragile way, my dad was blossoming, expressing himself.
Later, on a Sunday outing, when Harold was 74, he again quietly shocked me.
He suggested where he'd like to go for lunch. Used to his utter passivity, this was the first time in 45 years that I'd actually heard him express a preference. He asked to go to The Cactus Club Cafe on Broadway near Granville. I have no idea why he chose this loud, flashy place. I figured, at his age, it couldn't be the restaurant's voluptuous female servers in requisite tight black clothes. But you never know.
A couple of months after lunch at the Cactus Club I got a call from the kindly Filipina woman who ran Harold's boarding house. My dad had had a heart attack and was in St. Vincent's Hospital. I found out later he'd been having some pains in his arms and chest, but had thought they were minor and wouldn't visit his general practitioner.
The hospital's attending doctor didn't think it was worth coming to the ward to talk to me in person. Over the phone the physician (whom I am tempted to name, to make her squirm) said she wouldn't make any special effort to treat Harold's massive heart problems because, after all, he was a schizophrenic. He had, she said, very low quality of life.
I admit a part of me could see the doctor's emotionless logic. But another part of me was raging at what I saw as discrimination. I wanted to shake the doctor into some semblance of humanity -- at least show her my dad was capable of creating playful paintings. About an hour after this phone conversation, however, following a severe convulsion of pain, Harold died as I held his hand. It was Oct. 14, 1999.
Good friends, family and about a dozen people from Harold's art class and boarding house came to his funeral. We displayed some of his paintings, as well as the leather shoes he liked so much to walk in.
My dad, in his way, had had a life. But the stigma of schizophrenia had pressed down on him, literally, to the moment of his death.
Follow-up column: http://communities.canada.com/vancouversun/blogs/thesearch/pages/schizophrenia-a-story-of-my-father.aspx
"Losing his first decent job ever seemed like too much for Joe Holt to live with. It was time.
“All I remember then is a knock on the bedroom door and my wife, Patsy, she sits down on the bed and hugs me, and I’m holding the gun in my left hand, down here, out of sight,” said Mr. Holt, 50, a computer consultant and entrepreneur who has a diagnosis of schizophrenia [ http://health.nytimes.com/health/guides/disease/schizophrenia-disorganized-type/overview.html ].
“She says, ‘Joe, I know you feel like quitting, but what if tomorrow is the day you get what you want?’ And walks out. I sat there staring at that gun for an hour at least, and finally decided — never again. It can never be an option. Patsy deserves for me to be trying.”
.. one of any person's absolutely best assets is a good friend.
By Douglas Todd 19 Apr 2009 COMMENTS(23) The Search
National Newspaper Award Winner in 2005 - Best Long Feature
Schizophrenia: As the realities become better understood, the stigma has lessened. But it hasn't disappeared
Vancouver Sun .. Saturday, December 4, 2004 .. Byline: Douglas Todd
My first memory of my father is meeting him behind bars. I was four years old and my mother and older brother and I were visiting him inside a high-security ward called Crease Clinic at Coquitlam's Riverview Mental Hospital.
The wide steel door to the ward was about 10 centimetres thick. The small windows were covered with grey prison bars. My dad, Harold, sat still in a corner of the dim, smoke-filled room, with about 20 other patients. They all looked beaten down, with hunched shoulders. Out of it.
My dad shuffled meekly over to us, and the wardens allowed us to take him out for three hours on a Sunday drive in my mother's black Ford, which had running boards. It was the late 1950s. Not a good time to have schizophrenia.
Why my dad was locked up was beyond me. I knew he was seriously sick and needed help. But he seemed utterly passive, about as threatening as the red-breasted robins that fed in the cherry tree of our east Vancouver home. Maybe the bars were there to stop the inmates from jumping out the fourth-storey windows.
Sunday drives with my dad became the weekly routine. We'd motor around, visit a park, throw rocks into a lake, go out for ice cream or lunch. My dad spoke in monosyllables, if at all. The expression "painfully boring" could have been created for these dutiful events. Still, my mother, Mary, brother Dave and I did the visits because my dad seemed to appreciate them. And his parents fully expected us to go.
I was at Sir Richard McBride elementary school, age six, when I first heard the put-down: "Mental."
A kid hurled the epithet at someone in the school yard. I realized then that whatever it was that was happening to my dad was not only horrible, it was something for which I should also feel ashamed. This produced silence.
I didn't consciously realize I was keeping the secret, though, until we had moved to Lynn Valley and I was 13. That's when my best friend, in talking to my mother, referred to my uncle, George, who shared our home with us, as my father.
I guess I had wanted it to look to people like I was in a normal nuclear family. But my mom said I had to tell the truth.
* * *
This is a story about how times have changed. And not changed.
It's about how the stigma against schizophrenia is gradually eroding; how mass culture, psychiatry and science are evolving to recognize the realities of schizophrenia, which strikes one out of every 100 people, or 300,000 Canadians. Eight per cent of all hospital beds in the country are filled by people with schizophrenia, more than sufferers of any other medical condition. It virtually always hits between age 15 and 25.
This is a story about how a 33-year-old Coquitlam married woman with schizophrenia, Renea Mohammed, has come to the point where she can now say: "When I first got the disease I thought my life was over. But it's really not the end of the world to have schizophrenia. You can still do a lot and have a good life."
Yet, it's also a story about how people with schizophrenia are still misunderstood, ostracized and unjustifiably feared as a source of violence. It's about how people with schizophrenia, as a group, might be more discriminated against that those with any other major disease.
How enlightened are we compared to the 1950s?
Just around the time I was born, my dad, who my mom always describes as a "a nice man," apparently started acting strangely.
Although he had been an ambulance driver in France in the Second World War, had many friends and an accounting degree from the University of B.C., he apparently wasn't working effectively at the MacMillan-Bloedel lumber company. Despite not being an executive, he was insisting on using the executive washroom. He was fired.
His parents didn't think anything was wrong with him, but my mother grew extremely anxious. Harold was often talking in a jumble. He was making strange arm gestures over my body as it lay in its crib, which made my mom worry he was going to slice me up. He would scare my mother by holding her throat and talking about how pretty it was. Eventually, he waved a knife threateningly at her.
That was it. My mom felt she had no choice. Calling the police was the only way, in those days, that an unwilling person with psychiatric illness could get treatment. It often still is today.
When the cops arrived at our Arbutus neighbourhood house to take my father away, my mom felt incredibly guilty. Maybe she'd been a bad wife. She could hardly bear her sadness as she watched Harold, at age 26, run down the street to escape the chasing police. He stayed in Riverview for about the next 15 years, where my mom said he was subjected to more than 120 electroshock treatments. To what end?
After the police caught my dad, Mom called her brother, my uncle George, to pick us up. We went to live with him and my grandmother in east Vancouver. Mom began working at Vulcan Automotive Equipment Ltd. as a secretary, remaining there the rest of her working life, bringing in the money to raise us. My grandparents eventually realized their son was ill and did everything they could to help.
Despite the stigma, other family and neighbours pitched in to support my mother and help raise my brother and me. Gratitude to them will always be eternal. It made our lives seem almost normal, if you don't count the Sunday visits to Riverview Mental Hospital.
In certain quarters, it seems the stigma surrounding schizophrenia has eased, largely through scientific advances in probing the roots of the devastating illness.
But the clouds of caution are still thick. Mohammed believes strongly in being open about her disease. Working as a counsellor with people who are mentally ill and serving as a director of The B.C. Humane Society, Mohammed says, "I don't have any shame or guilt about having schizophrenia. I think it's important for people who are doing well with schizophrenia to let people know about it."
Still, Mohammed said she's not sure she wants anyone in her Coquitlam apartment building to know she was diagnosed with schizophrenia when she was 26. And, despite her courage, Mohammed declined to have her photo taken for this article.
There are still only a few people with schizophrenia who are like Mohammed, who are willing to educate the world by telling their powerful life stories. Most people with schizophrenia are burdened by a debilitating lack of confidence, fear, disease-induced lethargy and often voices.
As well, self-protectiveness conspires to keep people with schizophrenia from getting the attention advocates think they deserve. Jane Duval, public policy director for the Schizophrenia Society of B.C., says the amount of money spent per patient on schizophrenia research still pales in comparison to other diseases.
Patients are also not getting adequate housing. Duval says more than than 83 per cent of the chronically homeless people in Canada are mentally ill, and the biggest group among them are schizophrenics. Even though large, often-depressing psychiatric institutions such as Riverview are being phased out, many of the troubled patients with schizophrenia who have been released into the community aren't able to find an appropriate place to live.
Why? Feeling stressed and stigmatized, most people with schizophrenia and their relatives choose to live, like some homosexuals, in "glass closets." They're not absolutely secretive, but they're not exactly "out," either. They're finding it hard to stand up for themselves.
I remember talking openly a few years ago to one of Canada's most famous scientists about his son's schizophrenia. The scientist, however, never wanted the fact to be reported in the media, out of concern for his son. Other well-known Canadians, including politicians and CEOs, have become associated with the cause of improving the plight of people with schizophrenia, but they rarely publicly admit it's in the family.
One of the high-profile exceptions, former B.C. premier Mike Harcourt, once quietly acknowledged to a journalist, for publication, that his brother has schizophrenia. But he's never openly made a cause out of it. Duval says many family members still don't even tell loved ones with schizophrenia that they have the disease, something she believes is a big mistake.
It seems that for every two steps forward since the bad old days, we've also slipped back one step.
In ancient times in the West, people who were schizophrenic were routinely thrown out of their homes and left on the streets, where they would live, and often die.
Through much of the 20th century, people with schizophrenia in North America were at least sent to institutions, but it was often so they'd be forgotten, sometimes never to be seen again. Families would tell neighbours their sons or daughters had moved to another city or even passed away. No one wanted the stigma; in part because few would marry into a family that included a "lunatic."
Even as the study of psychology expanded exponentially in the late 20th century, unfortunate theories and misconceptions abounded.
Until recently, academia and medical schools did more than their share to keep people with schizophrenia and their loved ones cowering and hidden.
In the 1970s, when I studied in B.C. and California and was approaching the fateful age of 26, the age at which my dad was struck by schizophrenia, I devoted a fair chunk time worrying if I'd get it too.
I also remember devouring the work of two of the most influential psychiatrists of the era, R.D. Laing and Thomas Szasz.
Reading Laing's classic book, The Politics of the Family, I, along with a few million other budding intellectuals, bought into his thesis that "Madness is a sane response to an insane world." Laing almost glorified schizophrenia. And what did he say made the mentally ill the way there were? Their screwed-up families.
Around the same time, Szasz was making his own theoretical blunder. Szasz maintained there is no such thing as mental illness. As Duval puts it, Szasz claimed schizophrenia was just patients' way "of opting out of society and responsibility and having other people look after them."
Meanwhile, on the more popular front, in the realm of entertainment, Hollywood has also been doing its bit to promote mass ignorance.
Remember Joanne Woodward and her many personalities in 1957's The Three Faces of Eve? She was said to have schizophrenia. It took me a while after that movie to learn schizophrenia has nothing to do with multiple personality disorder. Most schizophrenics, struck down by shyness and brain confusion, can barely maintain one personality.
Then there was Alfred Hitchcock's classic, Psycho. It's about a psychotic who stabs young women. How did Norman Bates become a slasher? "Of course, in the movie it's all his mother's fault," says Duval, whose son has schizophrenia. When her son began hearing voices, Duval says, "Doctors treated me like I was a bad mom, and told me to stay away from him."
Then Jim Carrey did his bit for global misinformation in 2000 by starring as a "schizophrenic" New Jersey police officer who flipped uncontrollably between niceness and demonic sadism in Me, Myself and Irene. The comedy had some funny moments, but its depiction of schizophrenia came from pop science la-la land; destructive stereotypes again.
The advocates of those with schizophrenia have long complained about such dead-wrong caricatures. But Duval said they also realize that raising a stink can be counter-productive because it can make advocates look like "crotchety people." Instead, many have learned to brush such films off as merely "derivative."
Despite its reckless track record on mental illness, Hollywood finally came through in 2001.
Millions of North Americans with schizophrenia and their families were celebrating when some of the realities of the disease were treated responsibly in Ron Howard's Oscar award-winning movie, A Beautiful Mind (poster left). It's based on the true story of how Nobel Laureate John Nash, a U.S. mathematician, dealt with full-blown paranoid schizophrenia, including hearing voices from space aliens.
A Beautiful Mind was the indirect result of the light that began shining on schizophrenia in the 1990s.
Scientific advances that shed light on the causes and treatment of psychosis began giving people with schizophrenia and those who want to assist them a sense of hope -- and helped lift the blanket of misplaced guilt.
One of the liveliest signs of this healthier approach to schizophrenia is a B.C. website called www.psychosissucks.ca, [link added .. http://www.psychosissucks.ca/epi/ .. ] inspired in part by Dr. Bill MacEwan, director of the schizophrenia program at the University of B.C.
www.psychosissucks.ca is refreshingly frank in the way it appeals to young people. They're the ones who most have to be aware of the early signs of psychosis, of which schizophrenia is the major manifestation (followed by bipolar disorder). "Psychosis is treatable. Recovery is expected," the web page declares.
www.psychosissucks.ca honestly faces touchy issues about schizophrenia's possible genetic links -- "the gift that keeps on giving," as MacEwan quips -- including that children or siblings of people with schizophrenia (like my brother and me) have a nine to 13 per cent chance of succumbing to it. But if you haven't got schizophrenia by age 30, you're almost surely not going to get it at all.
In helping set up several Greater Vancouver centres for early treatment of schizophrenia, MacEwan's work is on the cutting edge of recent developments. Quick detection greatly reduces schizophrenia's harm, because researchers now believe the longer one lives with untreated symptoms of psychosis, the more toxic it becomes at destroying brain tissue.
Through outreach efforts exemplified by www.psychosissucks.ca, health care workers are helping people educate themselves about the importance of spotting schizophrenia's earliest signs.
Early symptoms include social withdrawal, reduced concentration, depression, anxiety and suspiciousness (behaviors which can sometimes be confused with mere adolescent acting out). Later symptoms are often more severe, such as delusions of being followed, of having special powers or being plotted against.
As a result of such educational pushes, MacEwan says now, when a doctor, nurse, counsellor or RCMP officer deals with troubled youths, some are learning to gently ask: "By the way, have you been hearing voices?"
Mohammed experienced hallucinations for more than a year before she or others recognized what they were.
"I thought it was all real, so I didn't know I was ill." While finishing her last stressful year of a master's degree in librarianship at UBC, she would hear strangers walking by and talking about her. "It was always critical," she says.
Like many other people with schizophrenia, Mohammed is highly intelligent and was getting good marks. But she was becoming increasingly disorganized and late with everything. Her husband, whom she'd married a year earlier, urged her to get help. She did, and with increasingly sophisticated medication, was soon up and running again, contributing to society.
If schizophrenia is caught early enough and treated, many people will never again experience a second episode, MacEwan says. Many others will recover over a longer period. That's a remarkable change from the bad old days, when patients like my father could disappear forever into often-harsh institutions.
Such new and liberating approaches to schizophrenia have come about because more scientists and physicians have learned the value of "medicalizing" the illness.
"It's been huge," MacEwan says. "People no longer say schizophrenia is a behavioral problem. Or that it's caused by how you were brought up."
Schizophrenia is now primarily viewed as a biological brain disease -- a dysfunction in neurotransmitters, the "chemical messengers" of the brain. Some people may have a genetic predisposition to it, which can then be triggered by brain injury or street drugs (especially crystal meth), but perhaps also over-use of marijuana and alcohol.
Emotional links to schizophrenia have not been totally ignored, however. Depending on the degree of predisposition to schizrophrenia, researchers believe it could be also be triggered by stress -- by a death in the family or by moving to a new city, or as a result of constant conflict in the home. The old brutally simplistic cause of "bad parenting" has been put in a much larger context.
The scientific emphasis is now on schizophrenia as a treatable "cognitive deficit." Norwegian scientists such as Dr. Mereta Oie are advancing arguments that the bizarre thoughts and invisible voices associated with schizophrenia are not its key features. Oie maintains the focus of testing and treatment should be more on cognitive difficulties with memory loss, problem solving and decision-making.
The big bonus of "medicalizing" schizophrenia is that the burden of guilt has been lifting -- freeing people with schizophrenia, and their family and friends, to mobilize.
Since the early 1990s, they've been pressing for more government research spending. They've been attracting major private donors, creating effective public education programs and producing quality, readable publications, such as Canada's Schizophrenia Digest. They've made progress.
Since the stigma issue is far from dead, the B.C. Schizophrenia Association has been among those producing TV and radio ads, such as one called "Subtitled." It depicts a young man with schizophrenia telling his friends about the diagnosis. It reveals the friends being phoney with him -- telling him they will be supportive while subtitles reveal their real secret inner thought: "Stay away from my family!"
Mohammed says she is generally treated politely when she tells people she has schizophrenia, although she admits she doesn't know what people are actually thinking. She does, however, recall being clearly ostracized in her mid-20s when she showed schizophrenia's symptoms of paranoia, delusions and withdrawal.
Mohammed also had to deal with people's apparent fears she would be violent. But, as she says, she was like the vast majority of people with the illness. She just wanted to hide. She was too disorganized to be aggressive. Although a tiny proportion of people with schizophrenia do act out bouts of freakish violence that make the news, Mohammed says your chances of being attacked by someone with schizophrenia are less than the possibility of being attacked by someone without the disease.
UBC's MacEwan is among those helping patients and their families develop techniques to reduce stigmatization. One of them is highly practical: Encouraging patients to keep their hallucinations to themselves, or their immediate family.
"If your loved one comes home and tells you that he's George W. Bush's replacement, you tell him you disagree and then say, 'Please pass the butter.' You also suggest, 'Let's keep that thought here.'"
Although such approaches are proving effective, MacEwan is the first to admit discrimination against people with schizophrenia is still a big problem. "It's not an illness people run toward and say, 'I'd like to help,'" he says. "Most people run away."
Here are three other key areas where advocates for those with schizophrenia see signs of discrimination:
RESEARCH
There are twice as many people with schizophrenia as there are with Alzheimer's. Schizophrenia is also five times more common than multiple sclerosis, six times more common than diabetes, and 60 times as prevalent as muscular dystrophy.
The Canadian Schizophrenia Society says: "Schizophrenia is youth's greatest disabler. The human costs are impossible to measure. The social and economic costs to Canadian society are staggering. Treatment and support for Canadian victims of schizophrenia is estimated at $4.5 billion per year. Yet research finding is substantially lower than for any other major disease."
HOUSING
With institutions such as Riverview being shut down, and so many people with schizophrenia either homeless or unable to afford anything other than a Downtown Eastside hotel room, MacEwan and Duval are among those who say governments must make more options available. "It's going to be a real challenge," MacEwan says, to provide more boarding houses or healthy independent-living situations.
EMPLOYMENT
Many people with schizophrenia are skilled and smart, but prone to sometimes unpredictable behavior. As MacEwan says, they might tell someone at work to "f--- off" and then get fired. But their swearing is just a symptom of their disease, MacEwan says, in the same way that someone with heart problems clutches his chest. If a person with schizophrenia is terminated for acting inappropriately, MacEwan believes the government should allow them to claim for disability payments.
On these fronts and more, MacEwan says, there is still such a long way to go.
* * *
As an adult, I continued the tradition of Sunday visits with my father, although I certainly didn't do so every week, as I did when I was a child.
I'd take Harold to parks for walks, to baseball games, to restaurants and to the horse races, anything that would provide amusement or distraction. I occasionally asked my sons to come along, because their grandfather is a part of the family history.
I learned to have no expectations on these excursions and during Christmas visits. So, when my dad did say something, it would be a bonus. Occasionally, he'd talk about the Canucks or B.C. Lions or something in the news. His favorite TV show was Lawrence Welk, the same as his parents. During our visits he'd frequently smile or chuckle to himself, appreciating some inner joke that was a complete mystery to me.
After his many years at Riverview, he had been able to move out and live for a while with his parents, where we had gone to see him for Sunday dinners. As my grandparents became frail and eventually died, Harold ended up in a provincial government-run boarding houses in Kitsilano and Fairview. I'd bump into him regularly as he walked the neighbourhoods or visited libraries.
Although Harold looked "different," he was orderly, never smoked, rarely spoke, read Maclean's magazine and the rotating staff at his boarding houses generally saw him as easy to get along with, even a gentleman. After living for almost four decades in some institution or another, he had learned compliance. As he aged, his medications had been reduced to minute doses.
Then something happened that was remarkable, at least to me.
I was having lunch with Vancouver Sun colleagues at Picasso's Restaurant on Broadway in the mid-1990s, when I saw some art work on the wall. It was signed, "Harold Todd." Stunned, I said, "That's my father's name."
The Kitsilano Community Care team staff, it turned out, had convinced my dad to take an art workshop. Every week for a year or two he'd been painting his child-like, alluring patterns. He had even sold some. I have one in my study depicting a patchwork of look-alike homes (perhaps like the one my dad was never really able to live in). In a fragile way, my dad was blossoming, expressing himself.
Later, on a Sunday outing, when Harold was 74, he again quietly shocked me.
He suggested where he'd like to go for lunch. Used to his utter passivity, this was the first time in 45 years that I'd actually heard him express a preference. He asked to go to The Cactus Club Cafe on Broadway near Granville. I have no idea why he chose this loud, flashy place. I figured, at his age, it couldn't be the restaurant's voluptuous female servers in requisite tight black clothes. But you never know.
A couple of months after lunch at the Cactus Club I got a call from the kindly Filipina woman who ran Harold's boarding house. My dad had had a heart attack and was in St. Vincent's Hospital. I found out later he'd been having some pains in his arms and chest, but had thought they were minor and wouldn't visit his general practitioner.
The hospital's attending doctor didn't think it was worth coming to the ward to talk to me in person. Over the phone the physician (whom I am tempted to name, to make her squirm) said she wouldn't make any special effort to treat Harold's massive heart problems because, after all, he was a schizophrenic. He had, she said, very low quality of life.
I admit a part of me could see the doctor's emotionless logic. But another part of me was raging at what I saw as discrimination. I wanted to shake the doctor into some semblance of humanity -- at least show her my dad was capable of creating playful paintings. About an hour after this phone conversation, however, following a severe convulsion of pain, Harold died as I held his hand. It was Oct. 14, 1999.
Good friends, family and about a dozen people from Harold's art class and boarding house came to his funeral. We displayed some of his paintings, as well as the leather shoes he liked so much to walk in.
My dad, in his way, had had a life. But the stigma of schizophrenia had pressed down on him, literally, to the moment of his death.
Follow-up column: http://communities.canada.com/vancouversun/blogs/thesearch/pages/schizophrenia-a-story-of-my-father.aspx
"Losing his first decent job ever seemed like too much for Joe Holt to live with. It was time.
“All I remember then is a knock on the bedroom door and my wife, Patsy, she sits down on the bed and hugs me, and I’m holding the gun in my left hand, down here, out of sight,” said Mr. Holt, 50, a computer consultant and entrepreneur who has a diagnosis of schizophrenia [ http://health.nytimes.com/health/guides/disease/schizophrenia-disorganized-type/overview.html ].
“She says, ‘Joe, I know you feel like quitting, but what if tomorrow is the day you get what you want?’ And walks out. I sat there staring at that gun for an hour at least, and finally decided — never again. It can never be an option. Patsy deserves for me to be trying.”
.. one of any person's absolutely best assets is a good friend.
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