Anatomy of an Epidemic (18 page)

Here is a third story of a young woman I’ll call Kate, as she did not want her real name used. Diagnosed with schizophrenia at age nineteen, she did well on antipsychotics. In Harrow’s study, she would have been among the 5 percent on meds who recovered. But she also knows what it is like to be off meds and doing well, and from her perspective, the latter type of recovery is totally unlike the first.

Before I met Kate in person, I knew from a phone conversation the bare outlines of her story, of how she had spent ten years on anti psychotics, and given that those drugs can take such a physical toll, I was a bit startled by her appearance when she showed up at my office. To be blunt, the words “drop dead gorgeous” popped into my head. A dark-haired woman, she wore jeans, a roseate top, and light makeup, and she introduced herself in a confident, warm way. Soon, she was showing me a “before” picture taken three
years earlier. “I was well over two-hundred pounds,” she says. “I was very slow, my face was droopy. I smoked a lot of cigarettes…. It was very inhibiting to any sort of professional look.”

Kate’s story about her childhood is a familiar one. Her parents divorced when she was eight, and she remembers herself as socially awkward and horribly shy. “I only had social skills enough to interact with my family members,” she says, and that awkwardness followed her to college. During her freshman year at the University of Massachusetts at Dartmouth, she found it difficult to make friends, and she felt so isolated that she cried constantly. Early in her sophomore year she dropped out and went to live with her mother in Boston, hoping to find a “purpose in life.” Instead, “my sense of reality started to disintegrate,” she recalls. “I started worrying about God versus the devil, and I started becoming afraid of everything. I’d say to my mom’s friend, ‘Is the food poisoned?’ I was acting quite bizarre, and I couldn’t make sense of the conversations around me. I would say these very odd things, and I would speak very slowly, very deliberately, and weird.”

When she began talking about seeing wolves in her bedroom, her mother put her in the hospital. Although she stabilized pretty well on the antipsychotic medication, she hated how it made her feel, and not long after she was discharged, she abruptly went off it, which triggered a florid psychotic break. During her second hospitalization, in February 1997, she was diagnosed with schizophrenia, and this time she accepted the fact that she would have to take antipsychotics for life. Eventually, she found a two-drug combination that worked well for her, and she began rebuilding a life. In 2001, she graduated from UMass Boston, and a year later she married a man she had met in a day treatment program. “We both had a psychiatric disability, and we both smoked heavily,” she says. “We both saw therapists daily. This is what we had in common.”

Kate took a job in a group home for the mentally handicapped, and although at times she had trouble staying awake, a side effect of her medications, she earned enough to get off SSDI. For a person with schizophrenia, she was doing extremely well. Yet she wasn’t happy. She had gained nearly one hundred pounds, and her husband often cruelly taunted her, telling her that she was “ugly” and
had a “fat ass.” She chafed too over how everybody in the system treated her. “Recovery on the med model requires you to be obedient, like a child,” she explains. “You are obedient to your doctors, you are compliant with your therapist, and you take your meds. There’s no striving toward greater intellectual concerns.”

In 2005, she grew closer to a longtime friend, who was twenty years older and belonged to a fundamentalist religious community. She began attending their meetings, and they in turn began advising her to dress, speak, and present herself to the world in a more formal way. “They told me, ‘You are representing God, and you don’t want to bring shame to God,” she says. Kate’s older friend also urged her to stop thinking of herself as schizophrenic. “He’s making me think outside the box, and to think in ways that before I never would have accepted. I would always defend my therapist, defend my psychiatrist, defend the drugs, and defend my illness. He was asking me to give up my identity as a mentally impaired person.”

Soon, her old life fell completely apart. She discovered that her husband had been sleeping with one of her friends, and after she moved out of their apartment, she had to sleep for a time in her car. Although at first, during that desperate time, she clung to her meds, the nonschizophrenic vision of herself also beckoned, and in February of 2006, she decided to take the leap: She would stop smoking, she would stop drinking coffee, and she would wean herself from her psychiatric medications. “Now I have no drugs, no nicotine, and no coffee, and my body is going into shock. I am coming down from all of this, and I am almost vibrating because I need my cigarettes, my drugs.”

This decision also put her at odds with most everyone in her life. “I stopped talking to my family, because I didn’t want to go back into that identity [of a disabled person]. My mind was very delicate. So I had to disengage from what I knew, and disengage from my therapist.” Soon, she was losing so much weight that her friends thought she must be sick. As she struggled to stay sane, she clung to the advice from her religious group, speaking to others in a very formal manner, and this behavior convinced her mother that she was relapsing. “Strange ain’t the word, honey” is how her mother puts it, and even Kate privately feared that she was becoming psychotic
again. “But I had this hope, this faith, and so I said to myself, ‘I am going to walk this tightrope across this horrible canyon, and hopefully when I get to the other side, there will be a mountain ridge I can stand on.’ I had to focus on going forward regardless of where it took me, because if I fell off the tightrope, I was back in the hospital.”

It was at that perilous moment, when it seemed that she was about to crash, that Kate agreed to meet her mother for dinner. “I think she is having a breakdown,” her mother says. “She sat very proper, and looked scattered and disorganized. Her body was stiff. I was seeing a lot of the same symptoms as before. Her eyes were dilated and she seemed paranoid.” As they drove away from the restaurant, Kate’s mother started to turn toward the hospital, but at the last second she changed her mind. Kate “wasn’t so crazy” that she needed to be locked up. “I went home and cried,” her mother remembers. “I didn’t know what was happening.”

By her mother’s reckoning, it took Kate six months to get through this withdrawal process. But she emerged on the other side
transformed
. “I see that her face is so alive now and she is more connected to her body,” her mother says. “She feels comfortable in her own skin and more at peace with herself than ever. She is physically healthy. I didn’t know that this kind of recovery was possible.” In 2007, Kate married the older man who had encouraged her to go this route; she also has thrived in her job as the manager of a home for people with psychiatric problems, the company recognizing her for her “outstanding” performance in 2008, an award that came with a cash prize.

Kate does still struggle at times. The home she manages provides shelter to several men who are sexual deviants—“I’ve had people say they are going to set me on fire, or they are going to pee in my mouth,” she says—and she no longer is having her emotional responses to such stress numbed by medication. “I’ve been off the drugs for two years, and sometimes I find it very, very difficult to deal with my emotions. I tend to have these rages of anger. Did the drugs bring such a cloud over my mind, make me so comatose, that I never gained skills on how to deal with my emotions? Now I’m finding myself getting angrier than ever and getting happier than
ever too. The circle with my emotions is getting wider. And yes, it’s easy to deal with when you’re happy, but how do you deal with it when you are mad? I’m working on not getting overly defensive, and trying to take things in stride.”

Kate’s story, of course, is idiosyncratic in kind. Her success at getting off meds does not mean that everyone can successfully withdraw from them. Kate is an
amazing
person—incredibly willful and incredibly brave. Indeed, what the scientific literature reveals is that once a person is on an antipsychotic, it can be very difficult and risky to withdraw from the medication, and that many people suffer severe relapses. But the literature also reveals that there are people who can successfully withdraw from the medications and that it is this group that fares best in the long term. Kate made it into that group.

“That day in 2005 when I decided to get better, that’s the dividing line in my life,” she says. “I was a completely different person then. I was very heavy, I smoked all the time, I had flat affect. Today I run into people who knew me then, and they don’t even recognize me. Even my mother says, ‘You are not the same person.’”

Fans of the cable television series
Mad Men
, which tells of the lives of Don Draper and other Madison Avenue advertising men in the early 1960s, may recall a scene from the last episode of season two, when a friend of Draper’s wife, Betty, says to her: “Do you want a Miltown? It’s the only thing keeping me from chewing my nails off.” That was a nice, historically accurate touch, and if the creators of
Mad Men
retain this period accuracy in season three and beyond, which will tell the story of the ad men and their families during the turbulent years of the mid-1960s, viewers can expect Betty Draper and her friends to reach into their purses and make sly references to “mother’s little helper.” Hoffmann-La Roche brought Valium to market in 1963, advertising it in particular to women, and from 1968 to 1981, it was the bestselling drug in the Western world. Yet, as Americans gobbled up this pill designed to keep them tranquil, something very odd happened: The number of people admitted to mental hospitals, psychiatric emergency rooms, and mental health outpatient clinics soared.

The scientific literature can explain why the two were linked.

Although anxiety is a regular part of the human psyche, our minds fashioned by evolution to worry and fret, there are some people who are more anxious than others, and the notion that such emotional distress is a diagnosable condition can be traced back to a New York nerve doctor, George Beard. In 1869, he announced that dread, worry, fatigue, and insomnia resulted from “tired nerves,” a physical illness he dubbed “neurasthenia.” The diagnosis proved to be a popular one, this illness thought to be a by-product of the industrial revolution that was sweeping America in the wake of the Civil War, and naturally the market created a variety of therapies that could restore a person’s “tired” nerves. Makers of patent medicines sold “nerve revitalizers” laced with opiates, cocaine, and alcohol. Neurologists touted the restorative powers of electricity, and this led those diagnosed with neurasthenia to buy electric belts, suspenders, and handheld massagers. Those who were wealthier could head to spas that offered “rest cures,” the patients’ nerves restored through the healing touch of soothing baths, massages, and various electric gadgets.