The Bipolar WorldSubmitted by scatter on Fri, 05/06/2005 - 8:03am
First Printed in the SF Bay Guardian September 2002 By: Sascha Altman DuBrul
I WAS 18 years old the first time they locked me up in a psych ward. The police found me walking on the subway tracks in New York City, and I was convinced the world was about to end and I was being broadcast live on prime-time TV on all the channels. I hadn't slept for months, and I thought there were microscopic transmitters under my skin that were making me itch and recording everything I was saying for some top-secret branch of the CIA. After I'd walked the tracks through three stations, the cops wrestled me to the ground, arrested me, and brought me to an underground jail cell and then to the emergency room of Bellevue psychiatric hospital, where they strapped me to a bed. Once they managed to track down my terrified mother, she signed some papers, a nurse shot me up with some hardcore antipsychotic drugs, and I woke up two weeks later in the "quiet room" of a public mental hospital upstate.
I'd spent the previous year as a freshman at a prestigious private college in Portland, Ore. At some point in the spring, around finals time, I'd gotten sick and gone to the campus health clinic. The school nurse gave me a prescription for penicillin, and I had an allergic reaction to it and almost died. To counteract the effects of the antibiotic, the hospital gave me a hardcore steroid called Prednisone, which totally messed up my sleeping schedule.
But somehow, instead of being tired, I managed to have an infinite amount of energy: I'd ride my bike really fast everywhere and do tons of sit-ups and push-ups after sleeping badly for two hours. Without realizing what was happening, I slipped into a perpetually manic state, talking a mile a minute and juggling a dozen projects that had nothing to do with my schoolwork. I seemed to have a new idea every couple of hours and would lie in bed unable to sleep while the thoughts shot back and forth around my head like a pinball game as I planned out the next 40 years of my life.
At some point I started to think the radio was talking to me, and I started reading all these really deep meanings in the billboards downtown and on the highways that no one else was seeing. I was convinced there were subliminal messages everywhere trying to tell a small amount of people that the world was about to go through drastic changes and we needed to be ready for it. People would talk to me and I was obsessed with the idea that there was this whole other language underneath what we thought we were saying that everyone was using without even realizing it.
My freaked-out friends called my mom, she bought me a plane ticket over the phone, and they somehow managed to get me on a flight back east. When I arrived at the airport with a mind speeding in sixth gear on a dozen different degenerating levels simultaneously, my mom was there to pick me up and bring me back to her apartment on the Upper West Side of Manhattan. I remember her telling me that in the morning she was going to take me to see "a man that could help me." I didn't much like the sound of that; it was obvious that they'd brainwashed her memory clean so that she wouldn't remember what an important role she was playing in the grand scheme, and I had to get out of there.
After I'd been in the psych ward for a while, the doctors diagnosed me with something called bipolar disorder (otherwise known as manic depression) and gave me a mood-stabilizing drug called Depakote. They told my mom to get used to the idea that I had a serious mental disorder I was going to be grappling with for the rest of my life and that I was going to require daily doses of medication to be able to function healthily in the outside world.
I didn't realize it at the time, but I, like millions of other Americans, would spend years wrestling with the implications of that diagnosis. Manic depression kills tens of thousands of people, mostly young people, every year. Statistically, one out of every five people diagnosed with the disease eventually commits suicide. But I wasn't convinced, to say the least, that gulping down a handful of pills every day would make me sane.
You have to understand this part of the story: I was raised by parents with pretty radical leftist politics who taught me to question everything and always be skeptical of big business and capitalism. I spent my teenage years growing up in a punk scene that glorified craziness and disrespect for authority. Also, from the time I was a little kid, everyone always said that I was very sensitive to the world around me and to the suffering of others, maybe too sensitive, and I just chalked it up to that. My worldview didn't leave any room for the possibility that my instability and volatility might actually have something to do with biology.
When I was 24, I ended up back in the same program, out in the New York suburbs, that my mom had put me in as a teenager. I was miserable and lonely. The doctors weren't quite sure what I had, so they diagnosed me with something called schizoaffective disorder. They gave me an antidepressant called Celexa and an atypical antipsychotic called Zyprexa. I was in group therapy every day. There was an organic farm to work on down the road from the halfway house, and after a couple weeks they let me volunteer there a few hours a day sowing seeds and potting plants in the greenhouse. Eventually I convinced them to let me live there, and I moved out of the halfway house and came for outpatient care just a couple of times a week.
It took a few months, but for the first time I could see that the drugs were actually working for me. It was more than the circumstances it actually felt chemical. Slowly all the horrible noise and thoughts faded and I started to feel good again. I remember watching an early summer sunset over the fields at the farm and realizing I was happy for the first time in months and months. Once I moved onto the farm full time, I would come into the city on the weekends to work at the farmers market and hang out with my friends. As obvious as it was that the drugs were helping me, I really just saw them as a temporary solution. They made me gain a bunch of weight. I always had a hard time waking up in the morning. My mouth was always dry. They were relatively new drugs, and not even the doctors knew about the long-term side effects of taking them. Besides which, the whole idea just made me feel really uncomfortable. How would I talk to my friends about it? What if there were some global economic crisis and instead of running around with my crew torching banks and tearing up the concrete I was withdrawing from some drug I suddenly didn't have access to anymore? I didn't want to be dependent on the drugs of the Man.
The police picked me up wandering the streets of Los Angeles on New Year's Day 2001. I'd been smashing church windows with my bare fists and running through traffic scaring the hell out of people screaming the lyrics to punk songs, convinced that the world had ended and I was the center of the universe. They locked me up in the psych unit of the L.A. County Jail, and that's where I spent the next month, talking to the flickering fluorescent light bulbs and waiting for my friends to come break me out.
I was quickly given the diagnosis of bipolar disorder again and loaded down with meds. "That's so reductionistic, so typical of Western science to isolate everything into such simplistic bifurcated relationships," I'd tell the overworked white-coated psychiatrist staring blankly from the other side of the tiny jail cell as I paced back and forth and he scribbled notes on a clipboard that said "Risperdal" in big letters at the top. "If anything I'm multi-polar, poly-polar I go to poles you'd never even be able to dream up in your imaginationless science or with all those drugs you're shooting me up with. You're all a bunch of fools!" And so I paced my cell.
Finally after the month in jail, a couple of weeks in a Kaiser psych ward, and four months in a halfway house for people with severe psychiatric disabilities, I got it together enough to be able to move back into my old collective house in North Oakland. I was taking a mood-stabilizing drug called lithium and an antidepressant called Wellbutrin.
And that's when I finally started doing the research I'd been putting off for so long. After a year of not being able to read, I started to pick up some books I'd collected about manic depression. And that's when I really began the internal and external dialogue about my condition, when I began to put the puzzle together and to make sense of it all so it wasn't just a bunch of isolated pieces that didn't fit together. I started talking to friends really openly and using the column I had in a punk rock magazine as a forum to talk about madness and manic depression. And I started coming to terms with the paradox that, however much contempt I feel toward the pharmaceutical industry for making a profit from manic-depressive people's misery and however much I aspire to be living outside the system, the drugs help keep me alive, and in the end I'm so thankful for them.
The Aug. 19, 2002, issue of Time states that 2.3 million people in the United States suffer from bipolar disorder. Given the vast number of people BPD affects on a daily basis, I'm amazed by how few books there are on the subject. Considering that young folks are the most heavily affected part of the population, the lack of books written about them seems particularly striking.
The Time article states that the average age of onset for BPD has fallen in a single generation from the early 30s to the late teens. And while it's unclear whether those stats have more to do with the current diagnostic procedures or some other societal variable, the fact is that BPD characteristically hits folks for the first time as teenagers.
It's confusing enough being a teenager in a society that's obviously so twisted and manic itself. Imagine being told to swallow that (a) you're the one who's sick, not the society; and (b) it's the society's medicine that is going to cure you. A hard sell for sure. It partly explains the high stats of psych-med noncompliance and high average of re-admittance to hospitals long after initial diagnosis. So where are the books for teens?
When I was institutionalized as a teenager in the early 1990s, the book the doctors recommended to my mom was called A Brilliant Madness: Living with Manic Depressive Illness, by Patty Duke and Gloria Hochman. This was the standard reading at the time, the book that all the doctors recommended if a family member had been diagnosed with BPD. A movie star before my generation's time, Duke describes in her memoir a rocky passage from childhood to suburban motherhood (with two children of her own) and all of her traumatic swings between mania and depression until she discovered lithium and finally got her life under control. Her story from disaster to eventual recovery and success, mixed with musings about the nature of the illness, are interspersed with more technical chapters using case studies by Hochman, a medical reporter.
Going back and reading this book a decade after its first publication, I was definitely more impressed with it than I remember being as a teenager. Although it reads less like a piece of literature and more like the self-help book that it is, A Brilliant Madness stands as the first popular book of its time to really talk about the nature and treatment of manic depression. Unfortunately, to a skeptical 21st-century teen diagnosed with BPD, I think it would leave a lot to be desired.
Eight years later, when I was pacing my cell in the L.A. County Jail and being given shots of Haldol to keep me from setting off the sprinkler system, the book the doctors recommended to my mom was An Unquiet Mind: A Memoir of Moods and Madness, by Dr. Kay Redfield Jamison. First published in 1995, in recent years it has become the book everyone reads about manic depression. Jamison is an interesting one: not only is she a psychiatrist but she's also bipolar herself and has been through the suicidally depressed and delusionally manic mood swings like the most dramatic and tormented of us. She also has quite a flair for writing, with a poetic command of language that left me smiling and reading certain passages over and over again. I would venture to guess that not too many psychiatrists out there use great words like "mercurial," "cauldronous," and"glacially." I found the book well thought-out and beautifully written.
Jamison has another, less well-known book called Touched with Fire: Manic Depressive Illness and the Artistic Temperament. While more academic and dense, the book attempts to draw out the connection between creative genius and bipolar disorder, using as examples such classic artists and writers as Virginia Woolf, T.S. Eliot, Hermann Hesse, Vincent van Gogh, and Jackson Pollock. I finished the book with the new understanding that I'm a part of a group of people that has been misunderstood and persecuted throughout history, but meanwhile has been responsible for some of the most brilliant of history's creations. I found the book rewarding in its attempts to tackle difficult questions about the nature of lithium treatment and the price artists pay in deciding whether to take the drugs. And questions about what would happen if people like us were actually weeded out through future genetic technology.
Touched with Fire left me wondering what a book about the relationship between bipolar disorder and creativity would look like if it was a little less academic and if the examples used were more contemporary artists and musicians, people whom (less classically cultured) folks from my generation might have actually heard of and be able to relate to.
At the beginning of this past summer, it seemed my question was partly solved. A friend brought to my attention a new book titled Detour: My Bipolar Road Trip in 4-D by a young woman named Lizzie Simon who was definitely thinking along similar lines. Diagnosed bipolar when she was 17 and now a successful theater producer in New York City with the help of her daily dose of lithium, Simon decided to travel across the country and interview other "successful" people who were bipolar and write about her adventures along the way. I was excited that, at long last, there was finally a book written by a person about my age dealing with our affliction. It's a quick read, definitely more my generation's speed, with short chapters that draw the reader in and a racy love story thrown in for good measure. And although I felt like I could connect to it on some levels, I still found something lacking.
Both Jamison's Unquiet Mind and Simon's Detour begin by talking about how idyllic and wonderful the authors' childhoods were. I think in both instances they're trying to drive home the point that their problems really are genetic in origin, that bipolar disorder can strike in the nicest of homes. But honestly, I just had a hard time relating to their good fortune. While I found Simon's descriptions of teenage mania eerily similar to my own stories and felt a connection in her enthusiasm and her drive to reach out to others like herself, her lack of consciousness about her own economic privilege in relation to the rest of the world smacked of the naivetÃ© of someone who's never stepped outside of the bubble of her upper class.
I kept thinking: If I'm having a hard time relating to this and I grew up relatively upper-middle-class, what about all the kids who read my column and send me letters who come from really dysfunctional working-class families? Who can they look to for inspiration and support?
And I found myself asking still deeper questions that no one else around me seemed to be able to answer: How do these drugs I'm taking actually work? What effects are they having on my brain chemistry? What's actually going on up there as I swing back and forth between mania and depression? As a college dropout with no background in molecular biology, neurology, or anything close to it, I started working my way through Essential Psychopharmacology: Neuroscientific Basis and Practical Applications, by Stephen M. Stahl, which was recommended to me by my psychiatrist at Kaiser as the most clear and well-written psych-med textbook available.
Reading it, I felt strangely like one of the androids in the 1980s sci-fi movie Blade Runner, the one about the droids who are so smart they've found their own blueprints and have gone looking desperately for their creator to help them reprogram themselves for longer life just before their time is up. Here I was, 27 years old, grappling with the intense reality that I have a genetic mental disease that supposedly only gets worse with age, lying in bed at night studying these complex diagrams in a psychopharmacology textbook, very conscious of the fact that my brain was reading about itself, that I was reading my own blueprints.
In the end, what it comes down to for me is that I desperately feel the need to connect with other folks like myself so I can validate my experiences and not feel so damn alone in the world, so I can pass along the lessons I've learned to help make it easier for other people struggling like myself. By my nature and the way I was raised, I don't trust mainstream medicine or corporate culture, but the fact that I'm sitting here writing this essay right now is proof that their drugs are helping me. And I'm looking for others out there with similar experiences.
But I feel so alienated sometimes, even by the language I find coming out of my mouth or that I type out on the computer screen. Words like "disorder," "disease," and "dysfunction" just seem so very hollow and crude. I feel like I'm speaking a foreign and clinical language that is useful for navigating my way though the current system but doesn't translate into my own internal vocabulary, where things are so much more fluid and complex. Toward the end of An Unquiet Mind, Jamison points out that even the term "bipolar" seems to obscure and minimize the illness it is supposed to represent by presupposing a polarization between two states that aren't always so easily picked apart. But "bipolar" seems to be the word we're stuck with for the moment.
Our society still seems to be in the early stages of the dialogue where you're either "for" or "against" the mental health system. Like either you swallow the antidepressant ads on television as modern-day gospel and start giving your dog Prozac, or you're convinced we're living in Brave New World and all the psych drugs are just part of a big conspiracy to keep us from being self-reliant and realizing our true potential. I think it's really about time we start carving some more of the middle ground with stories from outside the mainstream and creating a new language for ourselves that reflects all the complexity and brilliance that we hold inside.