Anatomy of an Epidemic (4 page)

Risperdal has also taken a physical toll. Cathy is five feet, two inches tall, with curly brown hair, and although she is fairly physically fit, she is probably sixty pounds heavier than what would be considered ideal. She has also developed some of the metabolic problems, such as high cholesterol, that the atypical antipsychotics regularly cause. “I can go toe-to-toe with an old lady with a recital of my physical problems,” she says. “My feet, my bladder, my heart, my sinuses, the weight gain—I have it all.” Even more alarming, in 2006 her tongue began rolling over in her mouth, a sign that she may be developing tardive dyskinesia. When this side effect appears, it means that the basal ganglia, the part of the brain that controls motor movement, is becoming permanently dysfunctional, having been damaged by years of drug treatment. But she can’t do well without Risperdal, and in the summer of 2008, this led to a moment of deep despair. “I will, of course, look pretty creepy in a few years, with the involuntary mouth movements,” she says.

Such has been her life’s course on medications. Sixteen terrible years, followed by fourteen pretty good years on Risperdal. She believes that this drug is essential to her mental health today, and indeed, she could be seen as a local poster child for promoting the wonders of that drug. Still, if you look at the long-term course of her illness, and you go all the way back to her first hospitalization at age eighteen, you have to ask: Is hers a story of a life made better by our drug-based paradigm of care for mental disorders, or a story of a life made worse? How might her life have unfolded if when she suffered her first manic episode in the fall of 1978, she had not been immediately placed on lithium and Haldol, the doctors instead trying other means—rest, psychological therapies, etc.—to restore her sanity? Or if, once she had been stabilized on those medications, she had been encouraged to wean herself from the drugs? Would she have spent sixteen years cycling through hospitals? Would she have gone on SSDI and remained on it ever since? What would her physical health be like now? What would her
subjective
experience
of life through those years have been like? And if she had been able to fare well without drugs, how much more might she have accomplished in her life?

This is a question that Cathy, given her experience with Ris perdal, had not thought much about before our interviews. But once I raised it, she seemed haunted by this possibility, and she brought it up again and again when we met. “I would have been more productive without the meds,” she said the first time. “It would break my heart” to think about that, she said later. Another time she lamented that with a life on antipsychotics, “you lose your soul and you never get it back. I got stuck in the system and the struggle to take meds.” Finally, she told me this: “The thing I remember, looking back, is that I was not really that sick early on. I was really just confused. I had all these issues, but nobody talked to me about that. I wish I could go off meds even now, but there is nobody to help me do it. I can’t even start a dialogue.”

There is, of course, no way of knowing what a life without meds might have been like for Cathy Levin. However, later in this book we will see what science has to reveal about the possible course her illness might have taken if, at that fateful moment in 1978, after her initial psychotic episode, she had not been medicated and told that she would have to take drugs for life. Science should be able to tell us whether psychiatrists have reason to believe that their paradigm of drug-based care alters long-term outcomes for the better or for the worse. But Cathy believes that this is a question that psychiatrists never contemplate.

“They don’t have any sense about how these drugs affect you over the long term. They just try to stabilize you for the moment, and look to manage you from week to week, month to month. That’s all they ever think about.”

Today, George Badillo lives in Sound Beach on Long Island, his neatly kept home only a short drive away from the water. Nearly fifty years old, he is physically fit, with slightly graying hair swept back off his forehead, and he has a quick, warm smile. His
thirteen-year-old son, Brandon, lives with him—“He is on the football team, the wrestling team, the baseball team, and the honor roll,” George says, with understandable pride—and his twenty-year-old daughter, Madelyne, who is a student at the College of Staten Island, is visiting him on this day. Even at first glance, you can see both are happy to have this time together.

Like many who have been diagnosed with schizophrenia, George remembers being “different” as a child. As a young boy growing up in Brooklyn, he felt isolated from the other kids, partly because his Puerto Rican parents spoke only Spanish. “I remember all the other kids talking and being so friendly and outgoing, mingling with each other, and I couldn’t do that. I’d want to talk with them, but I was always apprehensive,” he recalls. He also had an alcoholic father who often beat him, and because of that, he began to think that “people were always plotting and wanting to hurt me.”

Still, George did okay in school, and it wasn’t until his late teens, when he was a student at Baruch College, that his life began going awry. “I got into the disco life,” he explains. “I started doing amphetamines, marijuana, and cocaine, and I liked it. The drugs relaxed me. Only then it got out of hand and the cocaine started making me think all crazy. I got real paranoid. I felt there were conspiracies and all that. People were after me, and the government was in on it.” Eventually he ran off to Chicago, where he lived with his aunt and withdrew from the world that he felt was chasing him. Alarmed, his family coaxed him back home and took him to the psychiatric unit at Long Island Jewish Hospital, where he was diagnosed as a paranoid schizophrenic. “They are all telling me that my brain is broken, and that I will be sick for the rest of my life,” he says.

The next nine years passed in a chaotic whirl. Like Cathy Levin, George hated Haldol and the other antipsychotics he was told to take, and partly because of that drug-induced despair, he tried to kill himself multiple times. He fought with his family about the medications, went on and off the drugs, cycled through several hospitalizations, and, in 1987, became a father after his eighteen-year-old girlfriend gave birth to Madelyne. He married his girlfriend, intent on being a good father, but Madelyne was a sickly child and George and his wife both suffered breakdowns trying to care for
her. His grandmother took Madelyne to Puerto Rico, and George ended up divorced and living in a home for the disabled. There he met and married a woman also diagnosed with paranoid schizophrenia, and after a series of adventures and misadventures in San Francisco, they, too, got divorced. Despondent and paranoid once again, in early 1991 George landed in Kings Park Psychiatric Center, a run-down state hospital on Long Island.

Now came his descent into total hopelessness. After he tried to have a pistol smuggled into the hospital so that he could kill himself, he was given a two-year sentence in the locked facility. Then, as Christmas neared that year, he grew upset when several of his fellow patients weren’t allowed to go home for the holiday, and so he helped them escape, breaking a window in his room and tying sheets together so they could clamber to the ground. The hospital responded by moving him to a ward for people who had been institutionalized for decades. “Now I am on a ward with people urinating on themselves,” he recalls. “I’m a danger to society and drugged out. You sit down all day and watch television. You can’t even go outside. I thought my life was over.”

George spent eight months on that ward for the hopelessly mentally ill, lost in a haze of drugs. However, at last he was moved to a unit where he could go outside, and suddenly there was blue sky to be seen and fresh air to breathe. He felt a spark of hope, and then he took a very risky step: He began tonguing the antipsychotic medication and spitting it out when the staff weren’t looking. “I could think again,” he says. “The antipsychotic drugs weren’t letting me think. I was like a vegetable, and I couldn’t do anything. I had no emotions. I sat there and watched television. But now I felt more in control. And it felt great to feel alive again.”

Luckily, George didn’t experience a return of psychotic symptoms, and with his body no longer slowed by drugs, he began to jog and lift weights. He fell in love with another patient in the hospital, Tara McBride, and in 1995, after they were both discharged from the hospital to a nearby community residence, she gave birth to Brandon. George, who had never completely lost touch with his daughter, Madelyne, now had a new goal in life. “I realize I have a second chance. I want to be a good parent.”

At first, it didn’t go well. Like Madelyne, Brandon had been born with health problems—he had an intestinal abnormality that required surgery—and Tara broke down from that stress and was rehospitalized. Since George was still living in a residence for the mentally ill, the state did not deem him fit to care for Brandon and he was given to Tara’s sister to raise. However, in 1998 George began working part-time as a peer specialist for the New York State Office of Mental Health, counseling hospitalized patients about their rights, and three years later, he was able to present himself in court as someone who could be a good father to Brandon. “My sister Madeline and I got custody,” he says. “That was the best feeling. I was just jumping for joy. It was like the first time that someone in the system got custody of their kids.”

The following year, one of George’s sisters bought him the house he lives in today. Although he still receives SSDI, he does contract work for the federal Substance Abuse and Mental Services Health Administration and does volunteer work with hospitalized youth in Long Island. His is a life filled with meaning, and as Brandon’s success in school will attest, he is proving to be the good father he dreamed of becoming. Madelyne, meanwhile, is unabashedly proud of him. “He wanted to have Brandon and me in his life,” she says. “That made him want to turn around his situation. He wanted to be a father to us. He is proof that someone can recover from mental illness.”

Although George’s story is clearly an inspiring one, it doesn’t prove anything one way or another about the overall merits of antipsychotics. But it does prompt a clinical question: Given that his recovery began when he
stopped
taking antipsychotics, is it possible that some people ill with a serious mental disorder, like schizophrenia or bipolar illness, might recover in the absence of medication? Is his story an anomaly, or does it provide insight into what could be a fairly common path to recovery? George, who today occasionally takes Ambien or a low dose of Seroquel to sleep at night, believes that, at least in his case, getting off the drugs was what enabled him to get well. “If I had stayed on those drugs, I wouldn’t be where I am today. I would be stuck in an adult home somewhere, or in the hospital. But I’m recovered. I still have some strange ideas, but now
I keep them to myself. And I weather whatever emotional stress comes up. It stays with me for a few weeks and then it goes away.”

Monica Briggs is a tall, intense woman and, like so many people active in the “peer recovery” movement, immensely likeable. On the day that I have lunch with her, at a restaurant in South Boston, she comes hobbling over to the booth leaning on a cane, as she recently injured herself, and when I ask how she traveled here, she smiles, slightly pleased with herself. “On my bike,” she says.

Monica, who was born in 1967, is from Wellesley, Massachusetts, and as a teenager growing up in that affluent community, she seemed like the last person who might have a life of mental illness awaiting her. She came from an accomplished family—her mother was a professor at Wellesley, while her father taught at several Boston-area colleges—and Monica was a child who excelled at whatever she chose to do. She was a good athlete, earned top grades, and showed a particular talent for art and writing. Upon graduating from high school, she received several scholarship awards, and when she entered Middlebury College in Vermont in the fall of 1985, she believed that her life would follow a very conventional path. “I thought I’d go to school, marry, have a chocolate Labrador, and a home in the suburbs, with the SUV…. I thought it would all happen like that.”

A month into her freshman year at Middlebury, Monica was blindsided by a severe depressive episode that seemed to have no cause. She’d never had emotional problems before, nothing bad had happened at Middlebury, and yet the depression hit her with such force that she had to leave school and return home. “I was someone who had never quit anything before,” she says. “I thought my life was over. I thought this was a failure I could never recover from.”

A few months later, she returned to Middlebury. She was taking an antidepressant (desipramine), and as spring neared, her spirits began to lift. However, they didn’t just rise to a “normal” level. Instead, they soared beyond to what seemed a much better place. She now had energy to burn. She took long runs and threw herself into
her art, dashing off accomplished self-portraits in charcoals and pastels. She had so little need for sleep that she started a T-shirt business. “It was fantastic, great,” she says. “I am not thinking that I am God, or anything, but I am thinking I am pretty close to God at that point. This goes on for several weeks, and then I crash for what seems like forever.”

This was the start of Monica’s long battle with bipolar disorder. Depression had given way to mania followed by worse depression. Although she managed to complete her freshman year, with an A-minus average, she began cycling through depressive and manic episodes, and in May of her sophomore year, she gulped down handfuls of sleeping spills, intending to kill herself. Over the next fifteen years, she was hospitalized thirty times. While lithium kept her mania in check, the suicidal depression always came back, her doctors prescribing one antidepressant after another in an attempt to find the magic pill that would help her stay well.

There were times, between the hospitalizations, when she was fairly stable, and she made the most of them. In 1994, she earned a bachelor’s degree from Massachusetts College of Art and Design, and after that she worked for various advertising agencies and publishing houses. She became active in the Depressive and Manic-Depressive Association and developed its logo, the “bipolar bear.” But in 2001, after she was fired from her job for having stayed home for a week due to her depression, her suicidal impulses returned with a vengeance. She bought a gun, only to have it misfire six times when she tried to shoot herself. She spent three nights on a bridge that crossed a highway, desperately wanting to fling herself onto the roadway below, but refraining from doing so because she thought she might cause a crash that would hurt others. She was hospitalized several times, and then, in 2002, her mother died from pancreatic cancer, and her mental struggles took an even worse turn. “I am psychotic, hallucinating, seeing things. I think I have super powers and can change the way time flows. I think I have ten-feet wings and that I can fly.”