“If we value the pursuit of knowledge, we must be
free to follow wherever that search may lead us.”
—ADLAI STEVENSON (1952)1
McLean Hospital in Belmont, Massachusetts, is one of the oldest mental hospitals in the United States, as it was founded in 1817, when a type of care known as moral therapy was being popularized by Quakers. Their belief was that a retreat for the mentally ill should be built in a pastoral setting, and even today the McLean campus, with its handsome brick buildings and shaded lawns, feels like an oasis. On the evening in August 2008 that I came there, in order to attend a meeting of the Depression and Bipolar Support Alliance, that sense of tranquility was heightened by the weather. It was one of the most gorgeous nights of the summer, and as I approached the cafeteria where the meeting was to be held, I figured that attendance that night would be sparse. It was just too nice of a night to be inside. This was a meeting for people living in the community, which meant they would have to leave their homes and apartments to come here, and given that the McLean group met five times a week—there was an afternoon session every Monday, Thursday, Friday, and Saturday, and an evening meeting every Wednesday—I reasoned that most people attached to the group would skip this one.
I was wrong.
There were a hundred or so people filling the cafeteria, a scene that, in a small way, bore witness to the epidemic of disabling mental illness that has erupted in our country over the past twenty years. The Depression and Bipolar Support Alliance (DBSA) was founded in 1985 (known initially as the Depressive and Manic-Depressive Association), with this group at McLean starting up shortly after that, and today the organization counts nearly one thousand of its support groups nationwide. There are seven such groups in the Greater Boston area alone, and most—like the group that meets at McLean—offer people a chance to get together and talk several times a week. The DBSA has grown in lockstep with the epidemic.
The first hour of the meeting was given over to a talk about “flotation therapy,” and at first glance, the audience was really not identifiable—at least not by an outsider such as myself—as a patient group. The people here ranged widely in age, the youngest in their late teens and the oldest in their sixties, and although the women outnumbered the men, this gender disparity might have been expected, given that depression affects more women than men. Most in the audience were white, which perhaps reflected the fact that Belmont is an affluent town. Perhaps the one telltale sign that the meeting was for people diagnosed with a mental illness was that a fair number were overweight. People diagnosed with bipolar disorder are often prescribed an atypical antipsychotic, such as Zyprexa, and those drugs regularly cause people to put on the pounds.
After the talk ended, Steve Lappen, one of the DBSA leaders in Boston, listed the various groups that would now meet. There was one for “newcomers,” another for “family and friends,” a third for “young adults,” a fourth for “maintaining stability,” and so on, with the last of the eight choices an “observer’s group,” which Steve had organized for me.
There were nine in our group (excluding myself), and by way of introduction, everyone briefly spoke about how he or she had been doing lately—“I’ve been having a hard time” was a common refrain—and told of his or her specific diagnosis. The man to my right was a former executive who had lost his job because of his recurring depression, and as we went around the room, such life stories spilled out. A younger woman told of a troubled marriage to a Chinese man who, because of his culture, didn’t like to talk about mental illness. Next to her, a former prosecuting attorney spoke of how he’d lost his wife two years ago, and since then “I don’t feel like I know who I am.” A woman who was an adjunct professor at an area college told of how difficult her work was at the moment, and finally, a nurse who had been recently hospitalized at McLean for depression explained what drove her to that dark place: She had the stress of caring for an ailing father, the stress of her job, and years of living with “an abusive husband.”
The one lighter moment in this round of introductions came from the oldest member of the group. He had been doing pretty well lately, and his explanation for his relative happiness was one that Seinfield’s George Costanza would have appreciated. “Usually the summer is a hard time for me because everybody seems so happy. But with all the rain we have been having, that hasn’t been so much the case this summer,” he said.
Over the course of the next hour, the talk jumped from topic to topic. There was a discussion of the stigma that the mentally ill face in our society, particularly in the workplace, and talk too of how family and friends, after a time, lose their empathy. This was clearly why many in the group had come—they found the shared understanding to be helpful. The issue of medication came up, and on this topic, opinions and experiences varied widely. The former executive, while still regularly suffering from depression, said that his medication did “wonders” for him and that his greatest fear was that it would “stop working.” Others told of having tried one medication after another before finding a drug regimen that provided some relief. Steve Lappen said that medications had never worked for him, while Dennis Hagler, the other DBSA leader in the meeting (who also agreed to be identified), said that a high dose of an antidepressant has made all the difference in the world in his life. The nurse told of having responded very badly to antidepressants during her recent hospitalization.
“I had an allergic reaction to five different drugs,” she said. “I am now trying one of the new atypicals [antipsychotics]. I’m hoping that will work.”
After the group sessions ended, people gathered in the cafeteria in clutches of two and three, sharing small talk. That made for a pleasant moment; there was a feeling of social warmth in that room, and you could see that the evening had lifted the spirits of many. It was all so ordinary that this easily could have been the wrap-up moment to a PTA meeting or a church social, and as I walked to the car, it was that ordinariness that struck me most. In the observer’s group, there had been a businessman, an engineer, a historian, an attorney, a college professor, a social worker, and a nurse (the other two in the group hadn’t spoken of their work histories). Yet, as far as I could tell, only the college professor was currently employed. And that was the puzzle: The people in the observer’s group were well educated and they were all taking psychotropic medications, and yet many were so plagued by persistent depression and bipolar symptoms that they couldn’t work.
Earlier, Steve had told me that about half of the DBSA members receive either an SSI or SSDI check because they are, in the government’s eyes, disabled by their mental illness. This is the patient type that has been swelling the SSI and SSDI rolls for the past fifteen years, while the DBSA has grown into the largest mental health patient organization in the country during that time. Psychiatry now has three classes of medications it uses to treat affective disorders—antidepressants, mood stabilizers, and atypical antipsychotics—but for whatever reason, an ever greater number of people are showing up at DBSA meetings around the country, telling of their persistent and enduring struggles with depression or mania or both.
In medicine, the personal stories of patients diagnosed with a disease are known as “case studies,” and it is understood that these anecdotal accounts, while they might provide insight into a disease and the treatments for it, cannot prove whether a treatment works. Only scientific studies that look at outcomes in the aggregate can do that, and even then the picture that emerges is often a cloudy one. The reason that anecdotal accounts can’t provide such proof is that people may have widely varying reactions to medical treatments, and that is particularly true in psychiatry. You can find people who will tell of how psychiatric medications have helped them immensely; you can find people who will tell of how the drugs have ruined their lives; and you can find people—and this seems to be the majority in my experience—who don’t know what to think. They can’t quite decide whether the drugs have helped them or not. Still, as we set out to solve this puzzle of a modern-day epidemic of disabling mental illness in the United States, anecdotal accounts can help us identify questions that we will want to see answered in our search of the scientific literature.
Here are four such life stories.
I first met Cathy Levin in 2004, not too long after I had published my first book on psychiatry, Mad in America. I immediately came to admire her fierce spirit. The last part of that book explored whether antipsychotic medications might be worsening the long-term course of schizophrenia (a topic that is explored in Chapter 6 of this book), and Cathy, in some ways, objected to that thought. Although she had initially been diagnosed with bipolar disorder (in 1978), her diagnosis had later been changed to “schizoaffective,” and she had, by her own reckoning, been “saved” by an atypical antipsychotic, Risperdal. The history that I had related in Mad in America threatened, in some way, her own personal experience, and she called me several times to tell me how helpful that drug had been to her.
Born in 1960 in a Boston suburb, Cathy grew up in what she remembers as a “male-dominated” world. Her father, a professor at a college in the Boston area, was a veteran of World War II, and her stay-at-home mom saw such men as the “backbone of the social order.” Her two older brothers, she recalls, “bullied her,” and on more than one occasion, starting when she was quite young, several boys in her neighborhood molested her. “I cried all the time when I was a child,” she says, and often she pretended to be sick so that she wouldn’t have to go to school, preferring instead to spend her days alone in her room, reading books.
Although she did fine academically in high school, she was “a difficult teenager, hostile, angry, withdrawn.” During her second year in college, at Earlham in Richmond, Indiana, her emotional troubles worsened. She began partying with the young men on the football team, eager, she says, “to have sex” but, at the same time, worried about losing her virginity. “I was confused about being involved with a guy. I went to a lot of parties and I couldn’t concentrate anymore on my studies. I started to flunk out of school.”
Cathy was smoking a lot of marijuana, too, and soon she began acting in an eccentric manner. She borrowed other people’s clothes to wear, trekking around campus in “oversized clogs, a pair of overalls thrown over my regular clothes, a bomber jacket, and a funny hat I got from the Army-Navy store.” One night, on her way home from a party, she threw away her glasses for no reason. Her thoughts about sex gradually bloomed into a fantasy about Steve Martin, the comedian. Unable to sleep through the night, she would awaken at four a.m. and go for walks, and at times, it seemed that Steve Martin was there on campus, stalking her. “I thought he was in love with me and was running through the bushes just out of sight,” she says. “He was looking for me.”
Mania and paranoia were combining into a volatile mix. The breaking point came one evening when she threw a glass object against the wall in her dorm room. “I didn’t clean it up, but instead was walking around in it. I was, you know, taking the glass out of my feet. I was completely out of my mind.” School officials called police and she was rushed off to a hospital, and it was then, a few days before her eighteenth birthday, that Cathy’s medicated life began. She was diagnosed with manic-depressive illness, informed that she suffered from a chemical imbalance in the brain, and put on Haldol and lithium.
For the next sixteen years, Cathy cycled in and out of hospitals. She “hated the meds”—Haldol stiffened her muscles and caused her to drool, while the lithium made her depressed—and often she would abruptly stop taking them. “It feels so great to go off medication,” she says, and even now, when she remembers that feeling, she seems to get lost in the pure deliciousness of a memory from the distant past. “When you go off meds it is like taking off a wet wool coat, which you have been wearing even though it’s a beautiful spring day, and suddenly feeling so much better, freer, nicer.” The problem was that off the drugs, she would “start to decompensate and become disorganized.”
In early 1994, she was hospitalized for the fifteenth time. She was seen as chronically mentally ill, occasionally heard voices now, had a new diagnosis (schizoaffective), and was on a cocktail of drugs: Haldol, Ativan, Tegretol, Halcion, and Cogentin, the last drug an antidote to Haldol’s nasty side effects. But after she was released that spring, a psychiatrist told her to try Risperdal, a new antipsychotic that had just been approved by the FDA. “Three weeks later, my mind was much clearer,” she says. “The voices were going away. I got off the other meds and took only this one drug. I got better. I could start to plan. I wasn’t talking to the devil anymore. Jesus and God weren’t battling it out in my head.” Her father put it this way: “Cathy is back.”
Although several studies funded by the NIMH and the British government have found that patients, on the whole, don’t do any better on Risperdal and the other atypicals than on the older antipsychotics, Cathy clearly responded very well to this new agent. She went back to school and earned a degree in radio, film, and television from the University of Maryland. In 1998, she began dating the man she lives with today, Jonathan. In 2005, she took a parttime job as editor of Voices for Change, a newsletter published by M-Power, a consumer group in Massachusetts, a position she held for three years. In the spring of 2008, she helped lead an M-Power campaign to get the Massachusetts legislature to pass a law that would protect the rights of psychiatric patients in emergency rooms. Still, she remains on SSDI—“I am a kept woman,” she jokes—and although there are many reasons for that, she believes that Risperdal, the very drug that has helped her so much, nevertheless has proven to be a barrier to full-time work. Although she is usually energetic by the early afternoon, Risperdal makes her so sleepy that she has trouble getting up in the morning. The other problem is that she has always had trouble getting along with other people, and Risperdal exacerbates that problem, she says. “The meds isolate you. They interfere with your empathy. There is a flatness to you, and so you are uncomfortable with people all the time. They make it hard for you to get along. The drugs may take care of aggression and anxiety and some paranoia, those sorts of symptoms, but they don’t help with the empathy that helps you get along with people.”
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.”
That was the year she went on SSDI. Seventeen years after her initial manic episode, she had officially become disabled by bipolar disorder. “I hate it,” she says. “I am a Wellesley girl on welfare, and that’s not what Wellesley girls are supposed to do. It is so corrosive to your self-esteem.”
As might be guessed, given that she arrived at the diner on a bicycle, having pedaled there during her lunch break at work, Monica’s life eventually took a turn for the better. In 2006, she stopped taking an antidepressant, and that triggered a “dramatic change.” Her depression lifted, and she began working part-time at the Transformation Center, a Boston peer-run organization that helps people with psychiatric diagnoses. Although the lithium she has continued to take has its drawbacks—“my ability to create artwork is gone,” she says—it hasn’t exacted too great a physical toll. While she has a thyroid problem and suffers from tremors, her kidneys are fine. “I’m in recovery now,” she says, and as we get up to leave the diner, she makes it clear that she would like to secure a full-time job and get off SSDI. “Being on welfare is a phase in my life,” she says emphatically, “not an end.”
Such has been the long arc of her illness. As a clinical study, her story appears to tell simply of the benefits of lithium. That drug apparently kept her mania in check for decades, and as a mono therapy, it has helped keep her stable since 2006. Still, after years of drug treatment, she ended up on SSDI, and as such, her story illustrates one of the core mysteries of this disability epidemic. How did someone so smart and accomplished end up on that governmental program? And if we wind the clock back to the spring of 1986, a perplexing question appears: Did she suffer her first manic episode because she was “bipolar,” or did the antidepressant induce the mania? Is it possible that the drug converted her from someone who had suffered a depressive episode into a bipolar patient, and thus put her onto a path of chronic illness? And did the subsequent use of antidepressants alter the course of her “bipolar illness,” for one reason or another, for the worse?
To put it another way, in the world of people who attend DBSA meetings, how often do they tell of becoming bipolar after initial treatment with an antidepressant?
If you had met Dorea Vierling-Clausen in 2002, when she was twenty-five years old, she would have told you that she was “bipolar.” She’d been so diagnosed in 1998, her psychiatrist explaining that she suffered from a chemical imbalance in the brain, and by 2002 she was on a cocktail of drugs that included an antipsychotic, Zyprexa. But by the fall of 2008, she was off all psychiatric medications (and had been for two years), she was thriving in a life that revolved around marriage, motherhood, and postdoctoral research at Massachusetts General Hospital, and she was convinced that her “bipolar” years had all been a big mistake. She believes that she was one of the millions of Americans caught up in a frenzy to diagnose the disorder, and it very nearly ended with her becoming a mental patient for life.
“I escaped by the skin of my teeth,” she says.
Dorea tells me her story while sitting in the kitchen of her condominium in Cambridge, Massachusetts. Her spouse, Angela, is here, and their two-year-old daughter is sleeping in the next room. With her freckles and slightly frizzy hair, and evident zest for life, Dorea seems like someone who might have been a bit of a mischievous child, and to a certain extent, that is how she remembers herself. “I was extremely smart, at the far end of that spectrum, and so I was the geeky kid. But I had friends. I was skillful at social navigation—I was also the funny kid.” If there was one thing amiss in her life as a child, it was that she was overly emotional, prone to “angry outbursts” and “crying” jags. “Delightful, but odd” is how she sums up her seven-year-old self.
Like many bright “odd” kids, Dorea found pursuits she excelled at. She developed a passion for the trumpet and became an accomplished musician. A top student, she had a particular talent for mathematics. In high school, she ran on the track team and had many friends. However, she remained quite emotional—that part of her personality did not go away—and there was a very real source of distress in her life: She was coming to understand that she was a lesbian. Her parents were “extremely conservative Christians,” and while she loved them and deeply admired their devotion to social justice—her father, a physician, volunteered half of his time to work in a clinic he’d founded in Denver’s tough “Five Points” neighborhood—she feared that because of their religious beliefs, they wouldn’t accept her homosexuality. After Dorea’s freshman year at Peabody Institute, a prestigious music conservatory in Baltimore, she took a deep breath and told them her secret. “It went pretty much as awfully as could be expected,” she says. “There were tears, a gnashing of teeth. It was so desperately ingrained in their religious thinking.”
Dorea barely spoke to her parents for the next two years. She dropped out of Peabody and fell in with a punk crowd that lived in downtown Denver. The once aspiring trumpeter now ran around town with a shaved head and wearing combat boots. After working for a year at a shop that restored rugs, she enrolled at Metro State College, a commuter school. There she struggled constantly with her emotions, often crying in public, and soon she began seeing a therapist, who diagnosed her as depressed. Eventually she began to take an antidepressant, and during finals week in the spring of 1998, she found that she couldn’t sleep. When she showed up at her therapist’s office agitated and a little manic, he had a new explanation for all that bedeviled her: bipolar illness. “I was told it was chronic and that my episodes would increase in frequency, and that I would need to be on drugs for the rest of my life,” she recalls.
Although this foretold a bleak future, Dorea took comfort in the diagnosis. It explained why she was so emotional. This also was a diagnosis common to many great artists. She read Kay Jamison’s book Touched with Fire and thought, “I am just like all these famous writers. This is great.” She now had a new identity, and as she resumed her academic career, she arrived at each new institution—first at the University of Nebraska for an undergraduate degree and then at Boston University for a Ph.D. in math and biology—with a “giant box of pills.” The cocktail she took usually included a mood stabilizer, an antidepressant, and a benzodiazepine for anxiety, although the exact combination was always changing. One drug would make her sleepy, another would give her tremors, and none of the cocktails seemed to bring her emotional tranquility. Then, in 2001, she was put on an antipsychotic, Zyprexa, which, in a sense, worked like a charm.
“You know what?” she says today, amazed by what she is about to confess. “I loved the stuff. I felt like I finally found the answer. Because what do you know. I have no emotions. It was great. I wasn’t crying anymore.”
Although Dorea did well academically at Boston University, she still felt “really stupid” on Zyprexa. She slept ten, twelve hours a day, and like so many people on the drug, she began to blimp up, putting on thirty pounds. Angela, who had met and fallen in love with Dorea prior to her going on Zyprexa, felt a sense of loss: “She wasn’t as lively anymore, she didn’t laugh,” she says. But they both understood that Dorea needed to be on the medications, and they began organizing their lives—and their plans for the future—around her bipolar illness. They attended DBSA meetings, and they began to think that Dorea should scale back her career goals. She probably wouldn’t be able to handle the stress of postdoctoral research; her previous work in a rug shop seemed about right. “That sounds insane now,” says Angela, who is a professor of mathematics at Lesley College. “But at the time, she wasn’t a very resilient person, and she was becoming more and more dependent. I had to bear the weight of caretaking.”
Dorea’s possibilities were diminishing, and she might have continued down that path except for the fact that in 2003 she stumbled across some literature that raised questions about Zyprexa’s long-term safety and the merits of antipsychotic drugs. That led her to wean herself from that drug, and while that process was “pure hell”—she suffered terrible anxiety, severe panic attacks, paranoia, and horrible tremors—she eventually did get off that medication. She then decided to see if she could get off the benzodiazepine she was taking, Klonopin, and that turned into another horrible withdrawal experience, as she suffered such severe headaches she’d be in bed by noon. Still, she was gradually undoing her drug cocktail, and that caused her to question her bipolar diagnosis. She had first seen a therapist because she cried too much. There had been no mania—her sleeplessness and agitation hadn’t arisen until after she had been placed on an antidepressant. Could she just have been a moody teenager who had some growing up to do?
“I had always thought before that I was one of those cases where the illness was clearly biological,” she says. “It couldn’t have been situational. Nothing had gone terribly wrong in my life. But then I thought, well, I came out as a lesbian, and I had no family support. Duh. That could have been kind of stressful.”
The mood stabilizers were the last to go, and on November 22, 2006, Dorea pronounced herself drug free. “It was fabulous. I was surprised to find out who I was after all these years,” she says, adding that having shed the bipolar label in her own mind, her sense of personality responsibility changed, too. “When I was ‘bipolar,’ I had an excuse for any unpredictable or unstable behavior. I had permission to behave in that way, but now I am holding myself to the same behavioral standards as everyone else, and it turns out I can meet them. This is not to say that I don’t have bad days. I do, and I may still worry more than the average Joe, but not that much more.”
Dorea’s research at Massachusetts General Hospital focuses on how vascular activity affects brain function, and given that her struggles with “mental illness” can seemingly be chalked up as a case of misdiagnosis—“I have this fantasy of being undiagnosed as bipolar,” she says—it may seem that her story is irrelevant to this book. But, in fact, her story raises a possibility that could go a long way toward explaining the epidemic of disabling mental illness in the United States. If you expand the boundaries of mental illness, which is clearly what has happened in this country during the past twenty-five years, and you treat the people so diagnosed with psychiatric medications, do you run the risk of turning an angst-ridden teenager into a lifelong mental patient? Dorea, who is an extremely smart and capable person, barely escaped going down that path. Hers is a story of a possible iatrogenic process at work, of an otherwise normal person being made chronically sick by diagnosis and subsequent treatment. And thus we have to wonder: Do we have a paradigm of care that can, at times, create mental illness?
The Parents’ Dilemma
Early during the course of my reporting for this book, I met with two families in the Syracuse area who, a few years back, had been faced with deciding whether to put their children on a psychiatric medication. The reason that I had paired these two families up in my mind was that they had come to opposite conclusions about what was best for their child, and I was curious to know what information they had at their disposal when they made their decisions.
I first went to see Gwendolyn and Sean Oates. They live on the south side of Syracuse, in a pleasant house perched on a slight hill. A gracious, biracial couple, they have two children, Nathan and Alia, and as we spoke, Nathan—who was then eight years old—spent most of the time sprawled out in the living room, drawing pictures in a sketchbook with colored pencils.
“We began to worry about him when he was three,” his mother says. “We noticed that he was hyperactive. He couldn’t sit through a meal, he couldn’t even sit down. Dinnertime consisted of him running around the table. It was the same thing in his preschool—he couldn’t sit still. He wasn’t sleeping either. It would take us until nine thirty or ten p.m. to get him down. He would be kicking and screaming. These were not normal temper tantrums.”
They first took Nathan to his pediatrician. However, she was reluctant to diagnose him, and so they took him to a psychiatrist, who quickly concluded that Nathan suffered from “attention deficit hyperactivity disorder.” His problem, the psychiatrist explained, was “chemical” in kind. Although they were nervous about putting Nathan on Ritalin—“We were going through this on our own, and we didn’t know anything about ADHD,” his mother says—kindergarten was looming, and they reasoned that it would be the best thing for him. “The hyperactivity was holding him back from learning,” his mother says. “The school didn’t even want us to send him to kindergarten, but we said, ‘No, we are going to.’ We made the decision to keep him moving forward.”
At first, there was a period of “trial and error” with the medications. Nathan was put on a high dose of Ritalin, but “he was like a zombie,” his mother recalls. “He was calm but he didn’t move. He stared off into space.” Nathan was then switched to Concerta, a long-lasting stimulant, and he stabilized well on it. However, at some point, Nathan began to exhibit obsessive behaviors, such as refusing to step on the grass or constantly needing to have something in his hands, and he was put on Prozac to control those symptoms. While on that two-drug combo, he started having terrible “rages.” He kicked out his bedroom window during one episode, and he repeatedly threatened to kill his sister and even his mother. He was taken off the Prozac, and although his behavior improved somewhat, he continued to be quite aggressive, and he was diagnosed as suffering from both bipolar and ADHD.
“They say that ADHD and bipolar go hand in hand,” his mother says. “And now that we know that he is bipolar, too, we think he will probably be on drugs for the rest of his life.”
Since that time, Nathan has been on a drug cocktail. When I visited, he was taking Concerta in the morning, Ritalin in the afternoon, and three low doses of Risperdal—an antipsychotic—at various times during the day. This combo, his parents say, works fairly well for him. While Nathan is still moody, he doesn’t fly off into total rages, and his hostility toward his younger sister has abated. He does struggle with his schoolwork, but he is moving ahead from grade to grade, and he gets along fairly well with his classmates. The biggest worry that his parents have about the medications is that they may be stunting his growth. Nathan is smaller than his sister, even though he is three years older. However, the physician’s assistant and others who are treating Nathan don’t talk much about how the drugs may affect him over the long term. “They don’t worry about that,” his father says. “It’s helping him now.”
At the end of the interview, Nathan shows me his drawings. He is into sharks and dinosaurs, and after I tell him how much I like his artwork, he seems almost to blush. He has been quiet most of the time I have been there, and even a little subdued, but we shake hands as I get ready to leave, and he seems, at that particular moment, to be a very sweet and gentle kid. Jason and Kelley Smith live on the west side of Syracuse, about thirty minutes distant from the Oates family, and when I knocked on their door, it was their seven-year-old daughter, Jessica, who answered. It appeared that she had been waiting for me, and once I had my tape recorder on, she plunked down on the couch between her mother and me, ready to pipe in with her side of the story. “Jessica,” her father says a short while later, “has a lot of charisma.”
Jessica’s behavioral problems began at age two when she was sent to day care. When she got angry, she would hit and bite the other children. At home, she started having “night terrors” and all-out meltdowns. “The mildest thing would trigger her and she would be off,” her mother says.
The Smiths turned to their local school district for help. The district recommended that Jessica go to a “special ed” preschool in north Syracuse, and when she continued to behave aggressively at that school, they were told to take Jessica to the Health Sciences Center at the State University of New York for a psychiatric evaluation. There they saw a nurse practitioner, who immediately concluded that Jessica was “bipolar.” The practitioner explained that Jessica had a chemical imbalance and recommended that Jessica be put on a cocktail of three drugs: Depakote, Risperdal, and lithium.
“It blew my mind, especially the thought of putting her on antipsychotics,” Jason says. “She was four years old.”
He and his wife left that consultation not knowing what to do. Kelley works for Oswego County’s family service agency, and she knew of many troubled children who had been put on psychiatric medications. In that setting, the county expected parents to comply with medical advice. “There was part of me that thought maybe Jessica is bipolar, that’s what it is,” Kelley says. Moreover, SUNY Health Sciences told the Smiths that the center wouldn’t see Jessica again if she weren’t medicated. All of this pointed to following the center’s advice—the “experts are telling you that you need to do this, and that it is biological,” Jason says—but he had previously worked as a pharmacy technician and knew that drugs could have powerful side effects. “I was scared out of my mind.”
Kelley used the Internet to research the drugs that had been recommended. However, she couldn’t find any study that told of good long-term outcomes for children placed on such drug cocktails, and even the short-term side effects, she remembers, “were scary.” Meanwhile, Jessica’s pediatrician told them she thought it would be “absurd” to put Jessica on psychiatric drugs; Jason and Kelley’s families also thought it would be a mistake. Jason remembered how a few years earlier talk therapy had helped him address his own “anger management” issues, and if he had been able to change with out the use of medications, couldn’t Jessica change her behavior too?
“We just didn’t want to accept [the bipolar diagnosis]. Jessica is such an outgoing child, and we like to think she is gifted,” Kelley says. “And she had made so much progress from the time she was two years old. We just couldn’t see giving her the medications.”
They made that decision in 2005, and three years later, they say, Jessica is doing well. She gets mostly A’s in school; her teachers now think that her earlier bipolar diagnosis was “crazy.” While she does sometimes quarrel with other kids and will lash back verbally if another child teases her, she knows that she can’t hit anyone. At home, she still has the occasional meltdown, but her emotional outbursts are not so extreme as before. Jessica even has her own advice on how all parents should handle such tirades: “They should say [to their child] ‘come here,’ and then they should rub them on the back so they feel better and so they can’t have a meltdown, and so when they stop having a meltdown, that’s what they will remember.”
Before I leave, Jessica reads to me the book The Little Old Lady Who Was Not Afraid of Anything, and more than once she jumps to the floor to act out a scene. “Even with her behavioral issues, everybody loves her,” her father says. “And that’s what we were afraid of, with the medication, was that it would totally change her, and her personality. We didn’t want to impair her faculties. We just want her to grow up to be healthy and to succeed in life.”
Two different families, two different decisions. Both families now saw their decision as the right one, and both believed that their child was on a better path than he or she otherwise would have been. That was heartening, and I promised to check in with both families later, toward the end of my reporting for this book. Still, Nathan and Jessica were clearly on different paths, and as I drove back to Boston, all I could think about was how both sets of parents had needed to make their decision, on whether to medicate their child, in a scientific vacuum. Did their child really suffer from a chemical imbalance? Were there studies showing that drug treatment for ADHD or juvenile bipolar illness is beneficial over the long term? If you put a young child on a drug cocktail that includes an antipsychotic, how will it affect his or her physical health? Can the child expect to become a healthy teenager, a healthy adult?