Video link to Wildflower: You Have the Bipolar Disorder (Scroll down a little to start it, and click two small buttons in the lower left if it does not start right away.)
This video demonstrates the core belief all mental health professionals used to have, and many still do: “I’m OK and You’re Sick. We don’t have to listen to you because your mind is diseased. Nothing you say can have any value or meaning. We, on the other hand, are OK. You have to listen to us and do what we say, and we have the power to coerce if you give us a hard time.”
Practically everyone who has spent time in the mental health system has been treated that way by health care providers at one time or another. It happens less often now because the “patients” have convinced many professionals that people with severe mental illness can get well and stay well. The professionals thought that idea was radical, delusional, and anti-psychiatry until about 1995, when a few cracks began to appear in their wall of ignorance and arrogance.
Terrible things happened to people every day in mental health systems that knew for sure that recovery was impossible. They still do, but mental health systems are starting to grasp the recovery message. So many people have gotten well, stayed well, and told their stories of how they did it, that the health care providers are being brainwashed by the evidence.
Here’s what happened to me
At the world famous Beth Israel Hospital in Boston, where geniuses from Harvard practice medicine at the state of the art, the psychiatric staff told me I was a cab driver, not a writer. Thinking I was a writer was a notion I got from my hysterical, overachieving parents. It made me sick, and would keep me sick until I let it go. There’s nothing wrong with being a cab driver, they said. I should accept the person I am, get a furnished room in Kenmore Square, a job as a cab driver, take my meds , and learn to enjoy “coping.” That should be good enough for me.
I said, “If that’s such a good thing to do, why don’t you do it.”
The entire psychiatric staff, about 40 people squeezed around a table in a little seminar room for Grand Rounds, started shouting at me, calling me all sorts of names. I was arrogant, non-compliant, defiant, thought I was too good for my job, and looking for a free ride from the system. ”What’s wrong with driving a cab?” someone asked. ”It’s grunt work, but it’s honest.”
“It’s too dangerous, ” I said. If they said that, it would prove they were in touch with reality. When I said it, they called me more names.
I showed the first-year resident on my case a folder with my published magazine articles. He held them at arms’ length, away from his nose, between his thumb and index finger, like soiled underwear, and said, “What do you want me to do with this.”
“Give it back,” I said.
This really was the state of the art. Two years later, in another state, another treatment team told me driving a cab was the cure, and thinking I was a writer was the disease.
When both these treatment teams found me, I was a homeless psychotic cab driver. I’d gotten stable on medication and relapsed in those two years. Therefore, my destiny was driving a cab. Their job, as they saw it, was to get me stable enough to drive a cab again. Any agendas I might have for my own future just confused things and slowed up their work. They so much as said my hopes and dreams were a symptom of my disease.
They did not understand that driving a cab was part of the illness: a perfect isolation strategy. I could have all the mood swings I wanted, and no one was with me long enough to notice. I could be as angry, depressed, or psychotic as I wanted to be as long as I kept it quiet.
When Hollywood made a movie about the deadly combination of isolation and psychosis, they named it “Taxi Driver.” I heard the same voices in my head Robert de Niro did when he was driving, and when he killed all those people at the end, I knew just how he felt. But I had the Bureau of Bears in the cab with me to talk me out of doing anything that would end my life prematurely.
I did not tell the doctors about the Bureau of Bears until nearly 20 years later, when I’d been pulling my weight at a daily newspaper for so long that no one could call me crazy for saying I was a writer. If I had mentioned the bears to those two treatment teams, they would have labeled me schizophrenic and delusional, and given me as much major tranquilizer as I could stand, enough to turn me into a zombie. They would have told my parents to give up on me, that I would get worse over time because schizophrenia was chronic and degenerative. I’d have to take crippling doses of those crippling medicines for the rest of my life.
If I had told those doctors about the bears, I would not have had the life I have for the past 30 years.
The Bureau of Bears was not a delusion. It was a conscious product of my imagination, characters in a book I hoped to write someday. And I didn’t think they were real bears, just spirit bears. In the cab, they talked back to the nasty voices that said I was worthless and should kill myself. Many times, the bears had to shout those nasty voices down. When I was feeling better, the bears kept me company, made me laugh, and helped me understand the lessons you learn from picking up 30-40 people at random every night and taking them where they want to go. There’s every kind of people in New York, and sooner or later they all get in your cab.
The bears were not a sickness. They were a treatment, a wellness tool, a coping strategy. When I talked about the bears to Patricia Deegan, the recovery expert who got her Ph.D. in psychology after she was labeled schizophrenic, she said, “That’s brilliant. You channeled your illness to keep you alive. In many cultures, that would be considered a spiritual gift, not an illness at all.”
(NB: Federal studies that followed the same people for 25 years found that everything we thought we knew 20 years ago about hearing voices and schizophrenia were wrong: It is not always chronic and degenerative. One-third of people who have it are very symptomatic most of the time; one third are symptomatic with long “OK periods” in between; and one third have one episode and nothing more. Voices come from many places, not just schizophrenia: bipolar disorder, acute depression, previous traumas, and spiritual awakenings for example. Therefore, only some people need large, therapeutic doses of invasive medicine all the time.)
I never wrote that book about the bears. When I got out of New York, to a safe place, I found that I did not know how to write novels, and going back into the cab to write about it traumatized me. From time to time, I’ve tried to write book-length non-fiction memoirs, but I stop myself, thinking everybody’s writing recovery memoirs these days, and who gives a damn about mine. I’m not Patty Duke or anybody famous. Of course, they were rich and famous, with health insurance, before they got sick. When they got well, they went back to being rich and famous.
I did my hard-core starving and suffering without health insurance, sometimes without a permanent roof over my head. When I was in Dunkin’ Donuts at 3 a.m. because the voices in my head were keeping me awake, nobody bothered me for an autograph. The manager was more likely to call the police.
When I get too deep into remembering the past, I stop remembering and start reliving it, seeing the faces and hearing the voices, remembering the words, as if they’re happening now. Sometimes, my mind gets stuck in the past, and I have trouble getting out. It’s not a healthy or happy activity for me.
Where I differ from the video
The first time a doctor told me there was medicine that might help, I was relieved. It meant I had a real illness with a name and a treatment that works. My mother had that disorder and had a miraculous outcome from that medicine. So maybe I wasn’t just a jerk who kept making bad decisions and letting his life spiral down to the nothing it had become. Maybe I had an illness, and could get well.
I really do have the bipolar disorder, and I’ve been taking medicine for it since 1977. I have not had a problem with that disorder in more than 15 years. Medicine did not make me well, like it did my mother, but it stopped me from being sick. Then, I could go about the business of making myself well.
Like the video says, I know the medicine is working because it makes me feel better. When I don’t take it, I get extremely irritable and uncomfortable.. I’ve had no side-effects from the medicine that stop me from being the person I want to be, or living the way I want to live. I don’t mind taking it. Practically everybody my age takes medicine for something.
I’m well today because I’m happy with the person I am, and the quality and balance of my life. I’m a person I respect a person other people respect, and a person I like. Not many 62-year-old men can say that, whether they’ve had a mental illness or not. I take medicine, but so do people with high blood pressure or diabetes (only when they commit a crime, the newspapers don’t say they had high blood pressure or diabetes).
There is a lot of anti-medicine talk in the consumer movement. It has always made me uncomfortable because it does not account for the great outcome my mother and I had with medicine. When you press people about their anti-medicine statements, they invariably say, “Oh no! I’m not saying people should not take medicine. If it helps you you should take it. I’m just saying medicine should be presented as one of many options, not the only option.”
That is what I believe, word for word. Why don’t they say that up front, instead of making me coax it out of them all the time? Anti-medicine talk, without that essential qualification, killed my best friend.
David had what I have, and always stopped his medicine. He always said he had a “right” not to take it. He kept going off his meds until he lost it a few months later, and was taken back to the hospital against his will. They’d get him stable after he stopped fighting with them. They’d give him a “conditional discharge” that required him to continue outpatient treatment and keep taking his medicine. Each time, the conditions were stricter. Each time, he’d break the leash, stop his medicine, and go back to the hospital a few months later.
He listened to anyone who promised a way to get off his medicine: Christian Science, Scientology, Recovery Inc., R.D. Laing, Peter Breggin. He dabbled in them all at one time or another. He could list a ton of people with advanced degrees who said, like this video, there was no blood test or genetic marker that proved bipolar disorder exists.
Each relapse was worse, and took more out of him, than the one before. Once, when he was almost 50, he stopped his medicine again and stood in front of a train. I guess he was within his rights.
Medicine was always a “rights” issue for him, not a health issue. He and I were people with bipolar disorder who needed medicine. I’m happy and well, and he should not be dead. He followed his anti-medicine ideology to the grave. All he had to do was take care of himself. He was an irritating genius. On his medicine, he did more than any other individual to create a culture of recovery in the NH mental health system. Thinking about him still makes me angry.
When I pressed him for his objections to medicine, he said he was 15 pounds heavier than he was when he was a star athlete in high school. Who isn’t? And sometimes, he spaces out in two-hour meetings. Who doesn’t? S0 I get nervous when consumer rights movement people start talking against medicine, often generalizing from their own experience, without accounting for his experience and mine. They really need to be more careful.