Marnie Callahan's sister Nora has long been in constant conversation with Eric Clapton. Nora lived with Marnie for some time, but then one day Marnie came out of her room, eight months pregnant, and found Nora, then twenty-four, standing at the door with scissors in her hands. "I said, 'What are you doing here?'" Marnie recalled. "She said, 'I have no idea why I'm here. Who are you?' I picked up the phone, seven o'clock in the morning, and I said, 'Mom, Dad, I'm bringing her home right now.'" In the years that followed, Nora lived with her mother and went on and off her medications until they were no longer fully effective. "Finally my mother had a stroke," Marnie said. "I can't say Nora caused the stroke, because my mother had borderline high blood pressure, but it didn't help. Nora pushed my mother down and broke her shoulder. So I went to the State of Maine and applied for guardianship. I talk to Nora or do some Nora-related thing at least four or five times a day." At fifty-three, Nora is now in assisted housing, but keeps her sister abreast of her exchanges with Eric Clapton. Yet much of who Nora was survives within this troubled and troubling self. "She sees people so clearly," Marnie said. "It's almost as if in our social order we've learned to mask and hide. Schizophrenics cut right through that. For all of her contentiousness and discordant behavior, she's just trying to get by, like all of us. I can't abandon her. I'll visit her in her simple little apartment, and even with all this pain, she still has that fight in her. She still tries to have dignity in every day. A little flower arrangement over here, something pretty there. That little touch of something creative. It doesn't die."

Jeffrey Lieberman, at Columbia University, evinced considerable frustration around how little use is made of the tools we have. "The problem is that people become mental patients in their chronic wasteland, stuck away someplace in their rooms, smoking cigarettes, doing nothing, going to see a doctor for a prescription once a month," he said. "We now have medical and social means to help people. But because of limitations in resources, lack of awareness, and stigma, most people aren't helped." Only a small percentage of people with schizophrenia are refractory-unresponsive to medical treatment-and need permanent hospitalization, he explained. The rest could be managed with acute-care hospitals and adequate community services. "We have people in the hospital whose families don't want or can't take them back, and they can't live independently, and we can't find them a supervised residence. You discharge them to a homeless shelter." In the United States, 150,000 people with schizophrenia are homeless; one in five people with schizophrenia is homeless in any given year. Such people are soon off their meds and back at the hospital for acute care. This serves neither their medical advantage nor the state's economic interest. he said. "We now have medical and social means to help people. But because of limitations in resources, lack of awareness, and stigma, most people aren't helped." Only a small percentage of people with schizophrenia are refractory-unresponsive to medical treatment-and need permanent hospitalization, he explained. The rest could be managed with acute-care hospitals and adequate community services. "We have people in the hospital whose families don't want or can't take them back, and they can't live independently, and we can't find them a supervised residence. You discharge them to a homeless shelter." In the United States, 150,000 people with schizophrenia are homeless; one in five people with schizophrenia is homeless in any given year. Such people are soon off their meds and back at the hospital for acute care. This serves neither their medical advantage nor the state's economic interest.

The 2008 National Survey on Drug Use and Health reports that cost is the primary barrier to care for serious mental illness. Less than half of schizophrenics in the United States receive outpatient services; a little more than half receive prescription medication; and half of those who go untreated blame cost and insurance issues. When I asked Jeanne Frazier whether it had been emotionally draining to work with schizophrenic patients, she said, "The thing that makes me emotionally drained is managed care. When I have to fill out yet one more form just to increase the dose of an antipsychotic that's already approved, it really impacts the quality of service I can provide." Treating schizophrenia in the United States costs more than $80 billion a year, expenses that could be controlled with programs of active outreach to patients-most of whom, with supports to stay in appropriate treatment, could avoid both descents into raving hell and the ensuing expensive hospitalizations and incarcerations, largely underwritten by taxpayers. As things work now, it falls to families to organize support groups, construct community centers, create websites, and write memoirs full of advice.

A family member can commit a schizophrenic to institutional care only if he poses an "acute" danger to himself or someone else, and the burden of proof is difficult even though at least one in five schizophrenics will attempt suicide. A schizophrenic man jailed for a misdemeanor after quitting his medication was seen eating feces from the toilet bowl in his cell. On grounds that a person would not die from eating human waste, and that the man was therefore not a danger to himself, the judge refused to commit him. Kenneth Duckworth, a former medical director for the Massachusetts Department of Mental Health, said, "It's harder to get into a state hospital than into Harvard Medical School." Families are routinely obliged to lie about their relatives' symptoms to obtain services. Medical School." Families are routinely obliged to lie about their relatives' symptoms to obtain services.

Half to two-thirds of people with schizophrenia live with their families or have parents as primary caretakers, but according to a recent survey, only about 3 percent of those families deem it an appropriate arrangement. "The problem is that people burn out, especially because a family member with schizophrenia may not appear to appreciate the enormous amount you do for them," Lieberman explained. The family must be a treatment center, an outpatient unit, a constellation of eyes to watch over, a series of hands to cook or clean or soothe or restrain-in short, an interlocking and yet ceaselessly shifting system of organizations for the patient's discipline or haven. Family members frequently give up or compromise careers to do this work, resulting in economic hardship, and they face the stress of what people in the field call "unrelenting contact" with an ailing relative. Ezra Susser, an epidemiologist in the School of Public Health at Columbia who has worked with indigent schizophrenics, said, "You have to be really careful not to set up a situation where the family feels that they are being compelled, morally, to do more than they really can do." While family involvement improves the lives of schizophrenics, it does not transform them into who they might have been without the illness, and a family's costs in such attentions must be weighed against the benefits that can be achieved.

The World Health Organization recently undertook a vast study to see where the best outcomes were for people with schizophrenia. The best short-term results were in Nigeria and India-where medical treatment is often extremely basic. The reason appears to be the family support structures that are built into those societies. "It was very difficult for me, when I first trained here, to understand how a family could drop off their son or daughter and just leave," said Cyril D'Souza, who is Indian. "If you adjust for everything else-medication, dosages, access to care, socioeconomic status-the ones who are doing well tend to have meaningful family relationships." Whether the kinship structures of developing societies are preferable to Western ones for people in perfect health is debatable, but the division of labor within extended families clearly allows for a higher quality of care for people with mental illnesses. In Senegal, when someone is taken on as an inpatient at a mental hospital, a member of his family usually accompanies him there and stays for as long as he does. Such habits reassure psychotic people that they are permanently knitted into the social fabric.

In the West, conversely, families often disenfranchise schizophrenics. Some people with schizophrenia lack insight into their condition and have to be strong-handled, but others are the primary experts on their own condition, and some have offered their families suggestions on how to interact with them. Support groups for families of people with schizophrenia have proliferated in the last twenty years as the stigma around having produced a mentally ill child has diminished. Esso Leete, founder of the Denver Social Support Group, has schizophrenia and pleads, "Criticize only constructively. Do not write off all conflict as symptomatic of illness. Find a role for us in the family other than being the 'sick' member." One support-group website proposes, "Approach delusions in a spirit of shared inquiry. Don't push if the person starts to get upset." and have to be strong-handled, but others are the primary experts on their own condition, and some have offered their families suggestions on how to interact with them. Support groups for families of people with schizophrenia have proliferated in the last twenty years as the stigma around having produced a mentally ill child has diminished. Esso Leete, founder of the Denver Social Support Group, has schizophrenia and pleads, "Criticize only constructively. Do not write off all conflict as symptomatic of illness. Find a role for us in the family other than being the 'sick' member." One support-group website proposes, "Approach delusions in a spirit of shared inquiry. Don't push if the person starts to get upset."

While the positive symptoms of schizophrenia are most disturbing and striking to outsiders, the negative symptoms are frequently more burdensome for families coping with a son's or daughter's hostility, absence of personal hygiene, and listlessness. It is hard to remember that these are not flaws of character. The father of one schizophrenic said, "My loving, bright, amusing son was now not just very ill, but had also turned distant, cold, bitter, insultingly rude. It would have been easy to dislike him intensely." Twenty-five years later, the father was still struggling with this problem: "How do you keep on loving a son who can be an unpleasant stranger?" One mother said, "These kids die but they never get buried." An activist group called Families of the Mentally Ill Collective, formed by families of schizophrenics in Massachusetts in the early 1980s, stated, "The sick child inhabits a different world and that world, consciously or unconsciously, terrifies the parents." Schizophrenia cannot be cured with encouragement and love alone, but it can be hugely exacerbated by neglect.

Malcolm Tate, a man with severe paranoid schizophrenia, made murderous threats against his family for sixteen years while they tried persistently to find him treatment. He was repeatedly hospitalized, repeatedly released too soon, and would not take medication on his own. Finally, in December 1998, his mother and his sister drove him from their home in South Carolina, and his sister shot him to death by the road, then wept. "I was scared that one day Malcolm was going to lose his mind and harm me and my daughter, and I just didn't know what else to do," she said at her trial. She was sentenced to life in prison.

Rosemary Baglio's family is riddled with schizophrenia. Her uncle came home from World War II a little "touched." He lived with Rosemary's family in Malden, a working-class, Irish suburb of Boston, and as a girl, Rosemary loved to go up to his room. On good days, he would put rolls in the player piano and show the kids Irish step-dancing. On bad days, he would argue with his hallucinations. When Rosemary was in her late twenties, her brother Johnny became psychotic at age seventeen. Rosemary told her mother that something was wrong, but her mother refused to hear it. When Johnny started smashing things, Rosemary was the one who took him to Massachusetts General Hospital. "My mother wouldn't let anyone visit him, other than the family," Rosemary recalled. "We were never to tell anybody he was mental. So Johnny just completely lost contact with everybody." he would argue with his hallucinations. When Rosemary was in her late twenties, her brother Johnny became psychotic at age seventeen. Rosemary told her mother that something was wrong, but her mother refused to hear it. When Johnny started smashing things, Rosemary was the one who took him to Massachusetts General Hospital. "My mother wouldn't let anyone visit him, other than the family," Rosemary recalled. "We were never to tell anybody he was mental. So Johnny just completely lost contact with everybody."

Rosemary eventually had nine children. Her third, Joe, was the first boy in her family. "He had beautiful auburn hair and soft brown eyes and dimples, and he was just sweet," she said. "Everybody loved Joe." In high school, Joe began to have troubles. His parents thought he was getting into drugs. His grades dropped. He stayed up all night. "Finally when he was seventeen, I told him, 'Daddy and I are taking you to be examined. We have to find out what is going on.' He was terrified." That very day, he had his first real breakdown. "The kitchen had a long pantry with a window at the end of it, and the cabinets were all glass," Rosemary said. "I came home and it was all smashed, and there was blood all over the kitchen ceiling."

Rosemary found him checked into the hospital, with a severed artery in his arm. When she got there, Joey said, "I'm sorry, Ma, I'm sorry." When she wept, he reasoned, "It's better I'm here than any of my sisters." He stayed for a month.

Rosemary was determined not to repeat her mother's imposed isolation of Johnny. "I was very sad, but he was sick and that was it. I was up-front about exactly what was going on." Joey finished high school and found a job in a photography store. Then one day Rosemary got a call that he was running in traffic and screaming incoherently. When he emerged from that hospitalization, Rosemary decided to find him a halfway house, but within a year he was psychotic again. The Tri-City Authority, responsible for mental health services in Malden, insisted that he was not sick enough to be hospitalized because he knew his own name and address. He was living on a barren, rocky slope above Malden; Rosemary wouldn't let him come home because she was afraid he would harm his siblings. "Can you sacrifice the other eight for the one that's sick? He was so gentle underneath that if he ever did hurt somebody, how would he live with that afterwards? I had to protect him, too."

To keep contact, she promised to pay for Joe's cigarettes; she gave him enough money for only one pack at a time, so he had to come by her house every day. "I'd make sure he had something to eat and give him his money, and off he'd go," she said. Her husband, Sal, had been unable to cope with his son's illness; thirty years later, Rosemary insisted that I interview her at her daughter's house because she said her husband would fall apart if he heard her talking about it. "Thanksgiving was coming, and it was really cold," Rosemary told me. "I said to the court clerk, 'You have to get me in to see the judge today.'" Meanwhile, Rosemary told Joe that he'd have to pick up his cigarette allowance at the courthouse. She pulled him in front of the judge. "There were no soles on his sneakers. He was dirty from lying on the ground all night. I said to the judge, 'Could you serve Thanksgiving to anybody, knowing your son is living like this?' The judge committed him." been unable to cope with his son's illness; thirty years later, Rosemary insisted that I interview her at her daughter's house because she said her husband would fall apart if he heard her talking about it. "Thanksgiving was coming, and it was really cold," Rosemary told me. "I said to the court clerk, 'You have to get me in to see the judge today.'" Meanwhile, Rosemary told Joe that he'd have to pick up his cigarette allowance at the courthouse. She pulled him in front of the judge. "There were no soles on his sneakers. He was dirty from lying on the ground all night. I said to the judge, 'Could you serve Thanksgiving to anybody, knowing your son is living like this?' The judge committed him."

After his condition was stabilized, he was released to Sal's octogenarian parents in Somerville, five miles away. To maintain good mental health, Joe needed to have daily injections of Prolixin in Malden. "He went the first day by bus from Somerville to Malden," Rosemary said. "He waited, he waited, nobody there. Got on the bus, went back to Somerville. For three days he went, but the person was out sick, and nobody told us. Joey never got his shots. The fourth day he started hallucinating. He went in the backyard at Sal's father's, crawling on the ground like an animal. My father-in-law comes out on the back porch. He says, 'Joey, you come in and Grandpa will help you.'" Joey attacked his grandfather so savagely that he had to have brain surgery; if he'd died, Joey would have been charged with murder. Joey was committed to one year at Bridgewater State Hospital for the mentally ill.

"Oh, he was sick," Rosemary said. "Then they realized his days on insurance had run out. The very next day he was miraculously cured, and he was going to come home. I said, 'If any harm comes to anybody because of what you're doing today, I'm taking you to court and I'm going to sue you for every penny this place is worth.'" Joey was transferred to another hospital, and he eventually got well enough to leave. By this time, he was in his mid-twenties. Rosemary was open to having Joe at home again, but if she took him in, he would lose services given only to those with no place to go. She finally installed him in a halfway house with his uncle Johnny. In his later years, he devoted himself to taking pictures of the other residents, images striking both for the desolation they portray and for the kindness with which they portray it. He also drew, a skill he'd had since childhood. His primary psychiatrist still has a picture Joey drew hanging in her office, an ink sketch of himself. "You have to really look closely," she said when I saw it, "but there's another man in Joe's ear. That's the voices whispering to him."

On April 5, 2007, Johnny choked on a piece of meat and died. Two days later, Joey was diagnosed with lung cancer. "As soon as he was diagnosed, we moved him right home, consequences be damned," Rosemary said, weeping. "Every day he had chemo. They found it in his brain, started another kind of chemo. Then it was back in the lung. And he never complained. Joey said to me, 'Ma, it looks like I'm not going to make it.' He says, 'Ma, if I'm fighting, let me fight. But if I'm slipping away, please let me slip away.' That's what happened. He just slipped away right with me sitting there." Johnny and Joe are buried side by side. Rosemary said, weeping. "Every day he had chemo. They found it in his brain, started another kind of chemo. Then it was back in the lung. And he never complained. Joey said to me, 'Ma, it looks like I'm not going to make it.' He says, 'Ma, if I'm fighting, let me fight. But if I'm slipping away, please let me slip away.' That's what happened. He just slipped away right with me sitting there." Johnny and Joe are buried side by side.

When I met Sal, Joey had been dead for six months, and Sal was a shadow of a man. He was down to 112 pounds, gaunt and sorrowful. Rosemary was overflowing with her story, but Sal's sadness had turned him entirely inward. "Can I make Sal better?" Rosemary asked. "No. Can I make him want to live? No. I have been fighting for Joey for thirty-two years, I've been protecting him and fighting for him every inch of the way. And I couldn't save him. I couldn't save him."

Six months before Johnny choked, Rosemary had put her parents' house, where she had grown up, into an irrevocable trust. "I did it in case the halfway house didn't keep going, so that if those two were alive and we weren't, they would never be on the street. It's set up now so that if any of my grandchildren develop this, which is likely, they cannot become homeless. We're just waiting to see who's next."

Schizophrenic self-advocacy is different from Deaf rights or LPA politics or neurodiversity because members of those movements are presumed to have an accurate understanding of themselves. They are often accused of not appreciating mainstream reality; dwarfs cannot really know what it's like to be tall, and people with autism may not conceive of the pleasures of social intelligence. Their comprehension of their own circumstances, however, is usually sound. The defining quality of schizophrenia is that it entails delusion, which complicates its claims on identity. Are people who gain a sense of coherence from their schizophrenia achieving self-acceptance, or are they in a web of denial that is a symptom of their illness? Schizophrenics' own decisions are complicated by anosognosia anosognosia: having as a symptom of your illness the belief that you don't have an illness. In the Jacobean play The Honest Whore, The Honest Whore, Thomas Dekker writes, "That proves you mad, because you know it not." Thomas Dekker writes, "That proves you mad, because you know it not."

Schizophrenic self-advocacy raises awkward ontological questions. Is there a self that is more real than a patient's own current experience, a true self that can be teased apart from the symptomatic one? "We should not be in the business of choosing selves," Elyn Saks has written in her memoir of her schizophrenia. One father said, "I thought my son's getting better would mean that he didn't hear the voices. His getting better only means that he doesn't listen to them as much." I sometimes think that the emphasis on insight among psychotic people is like our focus on contrition among criminals. Self-awareness and remorse imply that aberrant people are more like us than their actions suggest, and that consoles us. But they serve little advantage unless they change behavior. Though intelligence is in general associated with better life outcomes for people with schizophrenia who survive it, schizophrenics with higher IQ are more likely to commit suicide than those with lower IQ; insight begets lower self-esteem and more depression, even for those who do better at some kinds of self-care. Further, those who are delusional are less likely to commit suicide than those whose delusions have gone away-even though some schizophrenics commit suicide because of command hallucinations. This insight that mainstream society wishes upon people with schizophrenia allows them to act in accordance with what the world expects. But it shouldn't be misconstrued. "You have no idea how many people you interact with who are hearing voices, but have the insight not to pay attention to them," John Krystal said. "I'm in awe of the patients I see, many of whom are functioning incredibly well despite constant hallucinations. Understanding what's going on saves them. But it doesn't make them happy." better only means that he doesn't listen to them as much." I sometimes think that the emphasis on insight among psychotic people is like our focus on contrition among criminals. Self-awareness and remorse imply that aberrant people are more like us than their actions suggest, and that consoles us. But they serve little advantage unless they change behavior. Though intelligence is in general associated with better life outcomes for people with schizophrenia who survive it, schizophrenics with higher IQ are more likely to commit suicide than those with lower IQ; insight begets lower self-esteem and more depression, even for those who do better at some kinds of self-care. Further, those who are delusional are less likely to commit suicide than those whose delusions have gone away-even though some schizophrenics commit suicide because of command hallucinations. This insight that mainstream society wishes upon people with schizophrenia allows them to act in accordance with what the world expects. But it shouldn't be misconstrued. "You have no idea how many people you interact with who are hearing voices, but have the insight not to pay attention to them," John Krystal said. "I'm in awe of the patients I see, many of whom are functioning incredibly well despite constant hallucinations. Understanding what's going on saves them. But it doesn't make them happy."

A recent New Yorker New Yorker article described Linda Bishop, a woman with psychosis whose hospital records said that she was "extremely bright" and "very pleasant," and "denies completely that she has an illness." She refused to sign any paperwork that said she was mentally ill. The article explains, "When psychotic, she saw herself as the heroine in a tale of terrible injustice, a role that gave her confidence and purpose." Linda eventually starved herself to death in an abandoned house, believing she was doing the Lord's will, and apparently at peace inside her own madness-happier, in many ways, than Krystal's wiser patients. article described Linda Bishop, a woman with psychosis whose hospital records said that she was "extremely bright" and "very pleasant," and "denies completely that she has an illness." She refused to sign any paperwork that said she was mentally ill. The article explains, "When psychotic, she saw herself as the heroine in a tale of terrible injustice, a role that gave her confidence and purpose." Linda eventually starved herself to death in an abandoned house, believing she was doing the Lord's will, and apparently at peace inside her own madness-happier, in many ways, than Krystal's wiser patients.

The Mad Pride movement believes that self-determination is a basic human right that should be extended to people with schizophrenia and other mental illnesses. Bringing together people who are afflicted with psychosis, it builds a feeling of horizontal identity among people who may have little other community. Members seek to minimize reliance on psychotropic medications and take control of their own healing; Judi Chamberlin, one of the first activists, said, "If it isn't voluntary, it isn't treatment." Gabrielle Glaser wrote in the New York Times, New York Times, "Just as gay-rights activists reclaimed the word "Just as gay-rights activists reclaimed the word queer queer as a badge of honor rather than a slur, these advocates proudly call themselves mad; they say their conditions do not preclude them from productive lives." Mad Pride has inspired events all over the globe, including recent demonstrations in Australia, South Africa, and the USA that have drawn both supporters as a badge of honor rather than a slur, these advocates proudly call themselves mad; they say their conditions do not preclude them from productive lives." Mad Pride has inspired events all over the globe, including recent demonstrations in Australia, South Africa, and the USA that have drawn both supporters and voyeuristic members of the public. An organizer for the Asheville Radical Mental Health Collective, a Mad Pride group in North Carolina, said, "It used to be you were labeled with your diagnosis and if people found out, it was a death sentence, professionally and socially. We are hoping to change all that by talking." and voyeuristic members of the public. An organizer for the Asheville Radical Mental Health Collective, a Mad Pride group in North Carolina, said, "It used to be you were labeled with your diagnosis and if people found out, it was a death sentence, professionally and socially. We are hoping to change all that by talking."

Mad Pride proponents advocate a wide range of health-promoting practices. David W. Oaks, who heads MindFreedom International and who has a diagnosis of schizophrenia, treats his condition with exercise, peer counseling, diet, and treks in the wilderness; he has refused medication and exhorts others to defy the psychiatric establishment. Of the period when he was forcibly medicated as a young man, he said, "They took a wrecking ball to the cathedral of my mind." Of his work since then, he said, "The human spirit is eccentric and unique and unconquerable and bizarre and unstoppable and wonderful. So this is really about reclaiming what it is to be human in the face of so-called normality." Sally Zinman of the California Network of Mental Health Clients said, "David is like the Malcolm X of the psychiatric survivor movement. He's out there speaking the truth in all its rawness and purity."

Oaks has brought the eye of the establishment to his cause; when he organized a hunger strike to protest the biological model of mental illness, the American Psychiatric Association met with the strikers, but found no middle ground and ultimately released a statement that said, "It is unfortunate that in the face of remarkable scientific and clinical progress, a small number of individuals and groups persist in questioning the reality and clinical legitimacy of disorders that affect the mind, brain, and behavior." More recently the antipharmaceutical activist Peter Breggin has pursued a campaign against the use of antipsychotics, saying, "The apparent improvement that patients show is actually a disability, a loss of mental capacity."

It is preposterous, even sentimental, to deny the biological nature of mental illness-or, indeed, the biological nature of mental health, however such a state is defined. But it would be unfortunate to dismiss David Oaks and Sally Zinman as merely crazy. Their relationship to Foucault and Laing is like Thomas Jefferson's to Rousseau, or Lenin's to Karl Marx. Ideas are the precondition of action, but the philosophers who hatch new concepts rarely put them into practice. Mad Pride represents the literalization of the old saw about the lunatics taking over the asylum. These activists believe they are throwing off a yoke of oppression. They both have a serious illness and have suffered tyrannical subjugation; the question is whether they can address the subjugation without making false claims about the nature of mental health.

Although most Mad Pride advocates criticize the manner in which medical professionals promote drugs as a primary treatment for mental illness, many rely on these drugs to function and support the right of others to choose for themselves whether to take medication. They insist that more can be done to mitigate side effects for those who must take such medications. Other activists speak of being "pro-choice" about drugs. Pharmacological treatments for schizophrenia carry risk of neurological impairment, metabolic dysfunction, long-term toxicity, diabetes, blood disorders, and rapid weight gain. Many people who initially experience their mental illness as a cataclysmic loss may make private decisions about how much treatment is worth how much side effect. The activist Will Hall has written in his Harm Reduction Guide to Coming off Psychiatric Drugs & Withdrawal, Harm Reduction Guide to Coming off Psychiatric Drugs & Withdrawal, "In a culture polarized between the pro-medication propaganda of pharmaceutical companies and the anti-medication agenda of some activists, we offer a harm reduction approach to help people make their own decisions." "In a culture polarized between the pro-medication propaganda of pharmaceutical companies and the anti-medication agenda of some activists, we offer a harm reduction approach to help people make their own decisions."

The British novelist Clare Allan wrote, "There seems to be some sort of agreement, a contract you sign when you first break down, that should you ever emerge from your madness and re-enter the 'normal' world, you promise never to mention what took place. The stigma attached to mental ill-health robs people of their experience, effectively tells them that for months or for years, or recurrently (as is often the case), they didn't exist at all. Is it any wonder groups such as Mad Pride find a need to address the issue of self-esteem?" Like other pride movements chronicled in this book, this one supports people with an intractable condition in their feelings of wholeness and worth. It emphasizes the cultivation of good self-care practices to support physical and emotional well-being. Rather than harkening back to a prepsychotic state, Mad Pride activists focus on concrete steps that mentally ill people can take to build a present life that is both functional and truthful. Responding to Allan, one online commentator said, "According to my doctor, I'm mad. I'm also proud of who I am and it's daft to pretend that my madness isn't part of that." The Icarus Project website explains, "We are a network of people living with and/or affected by experiences that are often diagnosed and labeled as psychiatric conditions. We believe these experiences are mad gifts needing cultivation and care, rather than diseases or disorders."

Much can be said for accepting yourself with whatever conditions you carry, but the obstacles to doing so are particularly formidable for schizophrenics. Some whom I met had found meaning in the condition, but none seemed particularly exultant about it. Despite moving statements made by advocates, Mad Pride does not have anything like the reach of the autism rights movement. I suspect that is partly because the agony can be so relentless in schizophrenia, but even more because of the illness's late onset. People with autism cannot imagine themselves or be imagined without it; it is intrinsic to their character. People with schizophrenia can imagine themselves without it because most didn't have it for the first two decades of their lives. If they posit "wellness," they are conceptualizing not an inaccessible fiction, but a familiar past. Mad Pride is positive for those who subscribe to it, and it has robust philosophical implications, but most people who descend into psychosis experience it, until negative symptoms and antipsychotics numb them, as a torment. like the reach of the autism rights movement. I suspect that is partly because the agony can be so relentless in schizophrenia, but even more because of the illness's late onset. People with autism cannot imagine themselves or be imagined without it; it is intrinsic to their character. People with schizophrenia can imagine themselves without it because most didn't have it for the first two decades of their lives. If they posit "wellness," they are conceptualizing not an inaccessible fiction, but a familiar past. Mad Pride is positive for those who subscribe to it, and it has robust philosophical implications, but most people who descend into psychosis experience it, until negative symptoms and antipsychotics numb them, as a torment.

Clare Allan, having recognized the need for Mad Pride, said, "People have to play the cards they're dealt, and they become who they are through doing so. But would anybody seriously wish for their child to develop mental health problems? Their partner? Their friends? The reality I recognize from my experience, and from that of my friends and what I've seen on the wards, is hopelessness and despair." Alison Jost, of Yale's Interdisciplinary Center for Bioethics, wrote that it seems easy to compare Mad Pride with disability rights. "But in fact," she went on, "no matter how destigmatized our society becomes, mental illnesses will always cause suffering."

Walter Forrest's son Peter lapsed into schizophrenia his junior year in high school, arguing with his siblings so aggressively that he had to be physically restrained. "It was like the top of his head blew off," Walter said. "He'd always been Mr. Popularity, and then he had some minor social adjustment problems, and now we were wrestling him to the ground." A few weeks later in the car, Peter said, "Dad, don't hold the steering wheel that way, or I'm getting out." Walter was perplexed. "Peter had an offbeat sense of humor, so I was groping," he said. "A few days later, Peter found his way to the shrink's office at his school and melted down into total helplessness."

Peter rapidly developed acute illness. His father noted a greater loss every day. One night, Peter ambushed his father and tried to push him through a window. Eventually, Peter attacked Walter with a kitchen knife, and Walter had to call the police. Peter was put in a secure ward for six months. Like most parents, Walter struggled with the gradual realization that his son's problems were not transient. Walter explained, "The therapist who helped the most said, 'You've had the star quarterback. He's run over by a truck, breaks every limb in his body. Your hope now is not that he'll be a star quarterback, but that he will walk again.'" Peter is now in a residential facility, and he comes to see his father four times a year. "I take him to dinner, and he has a sleepover and goes back," Walter said. "Is there any positive in the relationship? Does it have its pleasurable moments? No. I would love him to do a minimum-wage job, bag groceries or something, and feel that he's done something to give himself worth. But the better he gets, it's almost the worse he gets, the sadder it is-because the 'might have been' just breaks your heart. Frankly, it would have been better if he'd died. Better for him, better for everybody. That sounds like the most terrible thing in the world to say. But his life is very, very hard for him, and it's hard on everyone else. Why didn't the truck just crush him completely if it was going to do this kind of damage?" times a year. "I take him to dinner, and he has a sleepover and goes back," Walter said. "Is there any positive in the relationship? Does it have its pleasurable moments? No. I would love him to do a minimum-wage job, bag groceries or something, and feel that he's done something to give himself worth. But the better he gets, it's almost the worse he gets, the sadder it is-because the 'might have been' just breaks your heart. Frankly, it would have been better if he'd died. Better for him, better for everybody. That sounds like the most terrible thing in the world to say. But his life is very, very hard for him, and it's hard on everyone else. Why didn't the truck just crush him completely if it was going to do this kind of damage?"

Walter looked for a long minute out the window. "And now I'm going to cry. You know, it is is a death. Joy is one of the few gifts we can give to our fellow human beings, especially our children, and I haven't been able to give any to Peter." a death. Joy is one of the few gifts we can give to our fellow human beings, especially our children, and I haven't been able to give any to Peter."

People with schizophrenia are avoided, mocked, and misunderstood. Little progress has been made to reduce the stigmatizing use of terms such as crazy, lunatic, crazy, lunatic, and and nutty nutty. When One Flew Over the Cuckoo's Nest, One Flew Over the Cuckoo's Nest, the film that shaped a generation's perceptions of schizophrenia, was filmed at Oregon State Hospital in 1975, the producers had the opportunity to use actual mental patients as extras, but declined because they "did not look strange enough to match the public image of mentally ill people." Though the Americans with Disabilities Act is supposed to shield the mentally ill, few protections are available to them. The number of both outpatient programs and in-hospital facilities is woefully inadequate, yet circumstances under which people with schizophrenia can live independently are also scarce. An American study from 1990 showed that 40 percent of landlords immediately rejected applicants with a known psychiatric disorder. People who are open about their schizophrenia are essentially unemployable, even if they have been asymptomatic for years. Only about 10 to 15 percent of them sustain full-time employment, but the structures of work can prove enormously beneficial; one leading researcher has noted, "No treatment I have seen is as effective as a job." Homeowners fight hard to keep treatment and residential facilities out of their neighborhoods. James Beck of the NIMH put it bluntly: "Many people can't tolerate working with chronic schizophrenics. Doctors and nurses don't like to treat patients who don't recover." the film that shaped a generation's perceptions of schizophrenia, was filmed at Oregon State Hospital in 1975, the producers had the opportunity to use actual mental patients as extras, but declined because they "did not look strange enough to match the public image of mentally ill people." Though the Americans with Disabilities Act is supposed to shield the mentally ill, few protections are available to them. The number of both outpatient programs and in-hospital facilities is woefully inadequate, yet circumstances under which people with schizophrenia can live independently are also scarce. An American study from 1990 showed that 40 percent of landlords immediately rejected applicants with a known psychiatric disorder. People who are open about their schizophrenia are essentially unemployable, even if they have been asymptomatic for years. Only about 10 to 15 percent of them sustain full-time employment, but the structures of work can prove enormously beneficial; one leading researcher has noted, "No treatment I have seen is as effective as a job." Homeowners fight hard to keep treatment and residential facilities out of their neighborhoods. James Beck of the NIMH put it bluntly: "Many people can't tolerate working with chronic schizophrenics. Doctors and nurses don't like to treat patients who don't recover."

Although they are erratic in their behavior, most people with schizophrenia are not dangerous to strangers. Schizophrenics are five to eighteen times as likely to commit homicide as are members of the general population, usually in connection with substance abuse; even including substance users, however, only 0.3 percent will commit homicide. A 1998 study found rates of violence in psychiatric patients who are not substance abusers consistent with those in the general population, and such violence is five times more likely to be directed at family members. Almost one in four families living with schizophrenic relatives experiences physical harm or the threat of it. Nonetheless, because schizophrenic violence may respond to hallucinations and be directed at random strangers, it has the same dark-hand-of-fate feeling as plane crashes, which frighten us so much more than fatal car accidents even though they are considerably rarer. population, usually in connection with substance abuse; even including substance users, however, only 0.3 percent will commit homicide. A 1998 study found rates of violence in psychiatric patients who are not substance abusers consistent with those in the general population, and such violence is five times more likely to be directed at family members. Almost one in four families living with schizophrenic relatives experiences physical harm or the threat of it. Nonetheless, because schizophrenic violence may respond to hallucinations and be directed at random strangers, it has the same dark-hand-of-fate feeling as plane crashes, which frighten us so much more than fatal car accidents even though they are considerably rarer.

In 2011, two cases of homicide by people with schizophrenia made headlines: Deshawn James Chappell's murder of Stephanie Moulton, a social worker who was caring for him; and Jared L. Loughner's spree in Arizona, during which he killed six people and wounded thirteen others, including US Representative Gabrielle Giffords, who was severely injured. Both men were thought to be potentially violent before these incidents took place, and both stories give evidence of a failed system.

When Deshawn Chappell was growing up, his mother, Yvette, thought he would be a minister. At nineteen, he changed. "He would say the devil was telling him to do things," Yvette recalled. "He would talk about curses and hexes." By twenty-one, he was constantly showering because his skin was crawling; he couldn't sleep because voices kept him awake. He nonetheless refused medication because of its side effects. Not until after his fifth arrest for assault was he referred to the Department of Mental Health. That arrest, in November 2006, was occasioned after Deshawn's stepfather, who had raised him, let him go from a job. Deshawn fractured three bones in his stepfather's left eye socket. The police report said that when officers arrived, the stepfather was "holding his head with a cloth and had blood running from his mouth."

Despite Deshawn's violent criminal record, he was passed around the state from facility to facility and ultimately placed in a group home where no one on staff was fully informed of his history. Stephanie Moulton, a petite young woman, was left on her own to care for seven people with schizophrenia because the budget didn't allow for additional support. The system failed her and her assailant. On January 20, 2011, Deshawn Chappell beat Stephanie Moulton, stabbed her to death, and left her seminude body in the parking lot of a church. "It was totally unnecessary for her to get murdered on the job when all she was trying to do was help people," her mother said. Yvette Chappell expressed deep sympathy for Stephanie's family. She explained that she had tried to get treatment for her son for years.

Unlike Deshawn Chappell, Jared Loughner had never been institutionalized. But before his rampage at a Tucson supermarket where Representative Giffords was holding a meet and greet, dozens of people knew of his instability. His behavior at Pima College the previous year had become increasingly bizarre and threatening; the police were called to deal with him on five occasions. In an e-mail months before the shoot-out, a fellow student said, "We have a mentally unstable person in the class that scares the living crap out of me. He is one of those whose picture you see on the news, after he has come into class with an automatic weapon."

In September 2010, Jared Loughner was suspended from school and told he could not return until he had a mental health clearance. "It seemed obvious that he had mental problems," one of his professors told the Wall Street Journal Wall Street Journal. "He was speaking language X and everyone else was speaking language Y." Two months after his suspension, Jared bought a gun. Two months after that, he rampaged. His parents, with whom he lived, said only, "We don't understand why this happened."

Larry A. Burns of federal district court judged Jared mentally unfit to stand trial in May 2011, four months after his attack. The New York Times New York Times reported, "Mr. Loughner, 22, rocked back and forth in his chair during the proceedings, buried his face in his hands midway through and interrupted the judge with an outburst. 'She died right in front of me. You're treasonous.'" The psychiatrist appointed by the court found that Jared "experienced delusions, bizarre thoughts, and hallucinations." Burns would eventually put him on forced medication; his lawyers argued, "Mr. Loughner has a due-process right to bodily integrity free of unwanted, forcible administration of psychiatric medication." An appeals court took him off medication; Jared went fifty hours without sleeping, paced until he had open sores on his feet, and stopped eating. The prison restarted medication on grounds that he was a danger to himself, and Burns upheld their right to do so. reported, "Mr. Loughner, 22, rocked back and forth in his chair during the proceedings, buried his face in his hands midway through and interrupted the judge with an outburst. 'She died right in front of me. You're treasonous.'" The psychiatrist appointed by the court found that Jared "experienced delusions, bizarre thoughts, and hallucinations." Burns would eventually put him on forced medication; his lawyers argued, "Mr. Loughner has a due-process right to bodily integrity free of unwanted, forcible administration of psychiatric medication." An appeals court took him off medication; Jared went fifty hours without sleeping, paced until he had open sores on his feet, and stopped eating. The prison restarted medication on grounds that he was a danger to himself, and Burns upheld their right to do so.

Jared was put back on medication on grounds that he was a danger to himself, but if he could be rendered competent to stand trial, the judicial consequences could be lethal. Cynthia Hujar Orr, a past president of the National Association of Criminal Defense Lawyers, asked, "Is it ethical and proper to help someone regain competence just to go after them for a death penalty offense or a murder offense?" A prison psychologist said that Jared sobbed uncontrollably whenever she met with him and covered his face. He ultimately pleaded guilty to avoid the death penalty, but his crime and illness constitute a punishment greater than any achieved by the criminal justice system. Jared Loughner, like Deshawn Chappell, is undoubtedly in sustained agony.

The facility containing the largest number of schizophrenics in the United States is the Los Angeles County Jail. At least three times as many mentally ill people are in jail as are in hospitals. Nearly 300,000 people with mental illnesses are in jail in the United States, most convicted of crimes they would not have committed if they had been treated; another 550,000 are on probation. Few are in for violent crimes; most are there for the myriad small transgressions that are inevitable for people impervious to social reality. They are dealt with not by doctors, but by police officers-and then prison guards and other criminals. A quarter of Massachusetts inmates required mental health treatment in 2011, up from 15 percent in 1998, according to the Department of Correction.

If one weighs the savings to the mental health system against the added burdens to the penal system, the penny-wise, pound-foolish nature of such budgeting becomes ludicrously obvious. The cases against Deshawn Chappell and Jared Loughner will cost the taxpayers hundreds of thousands of dollars. One can't help but wonder whether, for a fraction of that cost, their victims might still be living. While accommodating people with physical disabilities must be undertaken out of moral conviction, adequately treating people with severe psychiatric illness is a win-win situation; if moral conviction fails, economic self-interest should prevail.

"When other little girls were trying on their mothers' high heels, I was wrapping myself with Ace bandages, 'cause I thought it looked cool," Susan Weinreich recalled. Susan had a compulsion to bite her lips, and they were usually scabbed or openly bleeding. Ashamed, she would say to her mother, Bobbe Evans, "Why can't I stop?" Bobbe would just say, "You'll grow out of it." But schizophrenia did not manifest fully until Susan entered the Rhode Island School of Design (RISD) in 1973.

"I knew there was something wrong all along," Susan said, "but it wasn't until my freshman year that it became obvious to other people." During Susan's freshman year, her father left her mother. "That jostled everything enough so that symptoms started to bubble to the surface," Susan said. Unable to do her classwork, she began seeing a Freudian psychoanalyst, whose treatment involved regression to childhood states. Unfortunately, regression was one of Susan's symptoms, and she needed to move away from it, not deeper into it. "I was horribly dependent on him," she said. "I basically stayed in during the day and came out only at night, when I walked the streets and studied the moon. I saw deformed bodies; bloody faces; devils; bodies hanging from trees. The real people I saw all appeared distorted. They were missing arms, legs. I remember being very threatened by stains in the asphalt, and plastic bags caught in the bushes in January." The real people I saw all appeared distorted. They were missing arms, legs. I remember being very threatened by stains in the asphalt, and plastic bags caught in the bushes in January."

In her sophomore year, Susan entered RISD's glass-blowing department. "I had an intense need to be around fire," she said. In the first semester of her junior year, the school asked that she withdraw. "I just was imploding, burning myself with cigarettes and putting my fists through windows. In my better moments, I would go to the Brown medical library, looking, looking, looking for what was wrong with me." Susan had three separate hospitalizations that year. The doctors would explain that she needed to be on medication for the rest of her life, but wouldn't tell her what was wrong with her; she, in turn, refused to give the hospital the contact information for her parents. "Even though I had no understanding of what was happening, I had a very strong, strong strong desire to protect my family. I believed that I had baby breasts and adult breasts, and that the baby breasts were going to drop off, and the adult breasts would take their place. But I believed that if my mother came to my apartment and stayed overnight, these little men and women were going to come out of my breasts. The men were carrying scythes, and the women were carrying burlap bags. They would hurt her. I was afraid my mother would see them, which meant she would know about the devil in me. I couldn't tolerate that." desire to protect my family. I believed that I had baby breasts and adult breasts, and that the baby breasts were going to drop off, and the adult breasts would take their place. But I believed that if my mother came to my apartment and stayed overnight, these little men and women were going to come out of my breasts. The men were carrying scythes, and the women were carrying burlap bags. They would hurt her. I was afraid my mother would see them, which meant she would know about the devil in me. I couldn't tolerate that."

When she took in her brother's cat while he was traveling the summer following her sophomore year, the animal hid under an old, green vinyl reclining chair. "I thought the chair was infested with fleas, and then the fleas became sperm. I took out a bucket of paint and painted the whole chair white and took out a kitchen knife and started stabbing it." She didn't bathe for months on end and didn't brush her teeth for ten years. "I was like an animal, my hair knotted and greasy. I would cut myself and paint on the walls with my blood."

Bobbe had never heard the word schizophrenia schizophrenia until Susan's analyst called in 1979 to find out what kind of insurance Susan had, because he had finally decided that she needed to be hospitalized, perhaps for life. "That snapped my mother into something," Susan said, "and she came up to Rhode Island, threw me in the car, and tore me away from this guy." Bobbe took Susan to a doctor who said she should be hospitalized at once. Susan had developed facial hair, possibly in response to medication, and decided to let it grow. "When I saw this daughter, who I wanted to be this cute little thing, with hair on her face, it was just horrible," Bobbe said. Susan said, "I had all kinds of delusions about what that meant. It was down to my jawbone, and it was very thick, coarse, sexual hair." Bobbe decided to take Susan directly to Four until Susan's analyst called in 1979 to find out what kind of insurance Susan had, because he had finally decided that she needed to be hospitalized, perhaps for life. "That snapped my mother into something," Susan said, "and she came up to Rhode Island, threw me in the car, and tore me away from this guy." Bobbe took Susan to a doctor who said she should be hospitalized at once. Susan had developed facial hair, possibly in response to medication, and decided to let it grow. "When I saw this daughter, who I wanted to be this cute little thing, with hair on her face, it was just horrible," Bobbe said. Susan said, "I had all kinds of delusions about what that meant. It was down to my jawbone, and it was very thick, coarse, sexual hair." Bobbe decided to take Susan directly to Four Winds Hospital in Katonah, the best mental facility within easy driving distance. Susan was interviewed by Sam Klagsbrun, who ran the hospital. "I can still remember sitting in his office that day, and I even remember the Stars of David I had carved into my boots and drawn on my green shirt," Susan said. "The cigarette burns in it. He told me what was wrong with me. He gave me my diagnosis." Susan was admitted to Four Winds. Winds Hospital in Katonah, the best mental facility within easy driving distance. Susan was interviewed by Sam Klagsbrun, who ran the hospital. "I can still remember sitting in his office that day, and I even remember the Stars of David I had carved into my boots and drawn on my green shirt," Susan said. "The cigarette burns in it. He told me what was wrong with me. He gave me my diagnosis." Susan was admitted to Four Winds.

Susan's father had by now disappeared from her life completely; soon, Bobbe remarried. "I wanted my my life to go on," Bobbe said. "To my friends, I just said, 'Susan is having a problem, and the divorce kind of triggered it.' I really wanted her out of my life, and I felt relief because somebody was taking her off my hands. I'm not proud of saying that, but it's how I remember feeling. I wish I had known someone like present-day Susan when she was so sick, because it would have given me such hope. But there was nobody." life to go on," Bobbe said. "To my friends, I just said, 'Susan is having a problem, and the divorce kind of triggered it.' I really wanted her out of my life, and I felt relief because somebody was taking her off my hands. I'm not proud of saying that, but it's how I remember feeling. I wish I had known someone like present-day Susan when she was so sick, because it would have given me such hope. But there was nobody."

Susan was at Four Winds for four months, then out, then back for another six, and eventually at a halfway house where she stayed for nine months in 1980 before moving back home, age twenty-four. "I would come home from work," Bobbe said, "and she would be lurking somewhere, not answering when I called her. Sam Klagsbrun said, 'You have to tell her to leave.' I said, 'But how can I?' He said, 'Just tell her that you would do anything in the world for her if she were making progress, but that this isn't helping her.' So I told her she had to leave. That was probably the hardest thing I ever had to do in my life." Bobbe wept. "She left, after writing a note that she was going to kill herself. Then she called Sam and went back to Four Winds."

Susan's accounts of Four Winds are rhapsodic: "It was a psychiatric utopia. There were ducks running around, and a chicken coop. I would spend my days in the pine forest. If an insurance company heard that today, they'd freak. Sam's treatment was incredible. I was an infant. He cuddled me; he hugged me. He picked me up out of a pothole in the pouring rain." Klagsbrun had started a hospice program-for non-psychiatric patients with terminal physical illness-in the lodge where the psychotic patients lived. "You take someone like myself, who was clearly psychotic and not living in reality, and you face them with the biggest reality, which is death," Susan said. "Even in my confusion, I understood it on some level, and it shocked reality back into me. Here I am, actively self-destructive, and yet these people wanted to live so desperately. It made me ask the the question, which is, do you want to live or die? I realized I wanted to move towards life." question, which is, do you want to live or die? I realized I wanted to move towards life."

Susan's emotional life began to revive. "I remember the first time I felt love, after all that. I don't even remember who it was-probably Sam. I just started feeling what it felt like to love someone. I don't remember it being ecstatic; I just remember it feeling like when I would go fishing as a young girl, and a sunfish would catch the hook. Just that tug on the other end of the line. After all those years of being so isolated within myself and so disconnected, the medication sucked out some of the symptoms, and as the psychosis receded, it left room for my heart to grow. There were other psychotic episodes that followed, and I wasn't experiencing love too much during those. But during each remission, my experience of empathy and connectedness just expanded." Susan had continued to make art, and Klagsbrun adapted a little outbuilding for her to use as a studio. "My work has a dark side," she said, "but it's about creativity, and creativity is about giving life." Sam. I just started feeling what it felt like to love someone. I don't remember it being ecstatic; I just remember it feeling like when I would go fishing as a young girl, and a sunfish would catch the hook. Just that tug on the other end of the line. After all those years of being so isolated within myself and so disconnected, the medication sucked out some of the symptoms, and as the psychosis receded, it left room for my heart to grow. There were other psychotic episodes that followed, and I wasn't experiencing love too much during those. But during each remission, my experience of empathy and connectedness just expanded." Susan had continued to make art, and Klagsbrun adapted a little outbuilding for her to use as a studio. "My work has a dark side," she said, "but it's about creativity, and creativity is about giving life."

When Susan graduated from her most intensive treatment phase, she accepted a job at the hospital, which came with benefits, and her insurance paid for electrolysis to remove her facial hair. She was twenty-six years old. "Preparing for the larger world was still a tall order," she said. "I didn't know who the president was. My ego was like Swiss cheese. I was still having a lot of catastrophic visions. I didn't know the first thing about taking care of myself physically." She began seeing a therapist, Xenia Rose, and stayed with her for twenty years. "She had me write up a schedule. It had 'get up' and 'brush teeth' because I had no idea what a day was supposed to look like." Rose agreed to see Bobbe as well. "That was enormously helpful to me," Bobbe said, "because I had to just cry and say what I thought. But Susan's illness was not me; it was her. When I started to let go, she started to emerge."

By the time she was in her late thirties, Susan was reasonably stable. Zyprexa had "revolutionized" her life. She slept thirteen hours a night, but was coherent. Eventually, she switched to Abilify, which was less sedating. "I grow like lightning," Susan said. "What you see here today is a completely different soul than I was five years ago: developmentally, physically, visually, verbally. I've worked very hard, on every level, at eradicating every remnant of the illness. Intermittently, I have little things trigger here and there, but they only last a day or two. Sensory overstimulation, a bit of paranoia, misperceptions and distortions in my thinking and visual world. Some people get stressed and their back goes out. I get stressed and my mind goes out. But then it comes back."

Of all the things that required catching up, perhaps the most challenging was romance. At the time I met Susan, she was nearly fifty and had not yet had a full sexual experience. "I'd like to experience love. But do I know what love is? So far, my mother's it." Susan laughed. "My poor mother. She signed me up for three different dating services, simultaneously. It was grueling. But I looked at it as a way to grow developmentally. The schizophrenia has given me the ability to find something inside of me, parts of myself that I might not have been able to reach otherwise." grow developmentally. The schizophrenia has given me the ability to find something inside of me, parts of myself that I might not have been able to reach otherwise."

Susan has also attempted to reconnect with her long-absent father. One day she told me she had just spoken to him on the phone, for the first time in decades. "I told him that I loved him," she said. "It felt right to say that, despite his abandonment of me. I had written him a letter because he was turning eighty, and I thought I would free him from some guilt. I wanted him to know that he gave me the one tool I needed to climb out, which is my art, because he nurtured my creativity. He called after a week. We had a very superficial conversation about clamming or whatever he does down there, and then he became a little weepy, and he blurted out, 'I'll never forgive myself for walking out on all of you.' It took all I had to hold me back from jumping in my car and driving down there. But I decided not to call again. We have too much in common."

Bobbe eventually came to accept, understand, and finally be proud of her daughter. She works in the travel industry and gives all her earnings to Susan. In turn, Susan has donated most of the proceeds of her sales of her rich, strange, beautiful art to Four Winds. She has taken up public speaking. Bobbe heard Susan address a mental health dinner at Grand Central Station. "I couldn't believe it. There were like three hundred people there-and this is Susan Susan. I mean, how did this happen?" Bobbe said. Susan's relationship with Bobbe is almost completely resolved. "She's definitely a stronger person than I've ever been," Bobbe said. "What saved her? It was her art; it was Dr. Klagsbrun; it was the support from her brothers and me. But most of all, it was Susan. There was something in Susan that always wanted to come to the surface. I deserve a medal. I really do. But Susan deserves lots of medals. I feel really bad that she had to go through what she went through. But I also recognize that if she hadn't, she wouldn't be who she is today. And who she is today is the most wonderful, charming, beautiful woman. She used to say, 'It's the cards you have dealt to you, Mom.' I think what I've finally come to terms with is that if you learn to live with things that aren't pleasant, then, suddenly, sometimes, they are."

The delusions of people with schizophrenia are not always cruel. "My son was doing the crossword," one mother told me, "and he was really mad because the voices kept giving him the answers." A young Indian man described his unusually affirmative delusions to me: "I would hear the leaves whispering love poems to me." Another man said, "I wish I could find a medication that would make the horrible voices go away and leave the ones I love." The relationship to the voices can be mediated by affection or even just urgency. A San Francisco mother said, "Even though they're not nice, they are his friends. It's private, and he understands them. His psychiatrist told him to be friendly to the voices and talk to them as though they were children." away and leave the ones I love." The relationship to the voices can be mediated by affection or even just urgency. A San Francisco mother said, "Even though they're not nice, they are his friends. It's private, and he understands them. His psychiatrist told him to be friendly to the voices and talk to them as though they were children."

Though schizophrenia was described in the ancient world and named a century ago, its mysteries continue to facilitate misconceptions. Michael Foster Green, professor in the UCLA Department of Psychiatry, writes, "When an illness is viewed as inexplicable and impenetrable, people tend to react to it with one of two extremes: either they stigmatize stigmatize it or they it or they romanticize romanticize it. It's hard to know which is worse." Someone who has never had a third-degree burn may not know what one feels like, but having had a first-degree burn, he can somewhat conceive of that pain; depression is an extreme version of commonplace feelings. Schizophrenia is fundamentally different. The German existentialist psychiatrist Karl Jaspers has identified "an abyss of difference" between psychosis and normal thought. The schizophrenic often cannot retrieve the language he knows, but even if he could, there is no appropriate language for him to use. We can understand the horrors of psychosis only at the level of metaphor. it. It's hard to know which is worse." Someone who has never had a third-degree burn may not know what one feels like, but having had a first-degree burn, he can somewhat conceive of that pain; depression is an extreme version of commonplace feelings. Schizophrenia is fundamentally different. The German existentialist psychiatrist Karl Jaspers has identified "an abyss of difference" between psychosis and normal thought. The schizophrenic often cannot retrieve the language he knows, but even if he could, there is no appropriate language for him to use. We can understand the horrors of psychosis only at the level of metaphor.

Anyone who loves his schizophrenic brother or son or daughter or friend knows that this person, though afflicted with a betraying genome, is also the sum of his experiences. In his book about his brother's illness, Jay Neugeboren writes, "For paid professionals to act as if Robert were merely a vessel of flesh in which (bad) chemicals somehow rose up once upon a time and made him ill, and in which other (good) chemicals must now be poured, deprives Robert of what he still possesses in abundance: his humanity. How not cry out against any and all attempts, when it comes to human beings with lives like Robert's, to reduce their humanity to their biology?" Andy Behrman, a writer with bipolar disorder, explained, "Mental illness cannot be treated separately from the person; they are inextricably linked. I've answered the question 'Where does mental illness end and where do I begin?' In my case, we are one. I've made friends with the enemy. My treatment is successful precisely because it takes both me and my disorder into account and doesn't delineate between the two of us."

Sometimes, we adduce retrospective wisdom from medication response. If you improved on Depakote, you must have had bipolar illness. If Zyprexa made you all better, you were probably schizophrenic. Useful though these agents are, however, work on them is still inconsistent, tangled in unproved theories, preoccupied with neurotransmitters that play an opaque role in illness. Reductive thinking about the nature of mental illness-the suggestion that it can be fully described by chemistry-satisfies those who fund research, and that research may help sufferers. It is also dishonest. Schizophrenia has no margins; it becomes what it invades. nature of mental illness-the suggestion that it can be fully described by chemistry-satisfies those who fund research, and that research may help sufferers. It is also dishonest. Schizophrenia has no margins; it becomes what it invades.

Classic schizophrenia is a horrible illness, but knowing what you or your child has can be weirdly comforting; classification builds identity. There is a community of people who have or treat the illness. But this condition operates in fine and sometimes bewildering gradations. Psychoanalyst Richard C. Friedman, who worked on the drafting of the DSM-III, DSM-III, said, "The problem in psychiatric diagnosis is that we have gone from an analog to a digital model, in which things are matters not of complex degrees but of a lot of 'yes' and 'no' that are like '0' and '1.' There are many practical advantages to classifying people, but clinical experience shows that isn't how the mind works. You have to deal with many layers of continuous phenomena." said, "The problem in psychiatric diagnosis is that we have gone from an analog to a digital model, in which things are matters not of complex degrees but of a lot of 'yes' and 'no' that are like '0' and '1.' There are many practical advantages to classifying people, but clinical experience shows that isn't how the mind works. You have to deal with many layers of continuous phenomena."

No one has ever been able to say quite what is wrong with Sam Fischer. I met him when he was thirty-three through a psychiatrist who was treating him for schizophrenia, but another clinician produced a diagnosis of Asperger's. Sam clearly has a mood disorder, with periods of intense depression and occasional bouts of hypomania, a nonpsychotic but excessive feeling of worth and power. His manipulative social interactions suggest borderline personality disorder. He has anxiety and phobias, signs of obsessive-compulsive and narcissistic personality disorders, and a long-running post-traumatic stress disorder. He presents, in short, a perfect multitude of psychiatric symptoms assembled in one brain as though for a gala reunion. "Nobody really understands me," he said. "I'm too weird for that."

Sam was born jaundiced at less than five pounds, even though he was at term. He wouldn't eat. The doctors worried that he was slipping away, and his parents, Patricia and Winston, spent Sam's early life at Children's Hospital of Philadelphia, where doctors looked for brain tumors and kidney diseases. Sam also had scoliosis and an undescended testicle that would have to be surgically removed. He never crawled and started walking late. On early standardized tests, he was, his mother recalled, "a linguistic genius, and practically retarded when it came to doing puzzles."

In kindergarten, Sam saw his first psychiatrist, who said he was "walking along the edge of an abyss." In elementary school, Sam couldn't do math, and he couldn't write or draw because coordination eluded him. Patricia remembered, "Winston and I said to each other, 'There are calculators now. What does it matter that he can't do sports or drawing?' Sam talked in complete and flowing paragraphs. At a florist shop, he'd name every really obscure plant. To us, that was wonderful; it should have been a sign that something was not wonderful. We were sure the strengths would outweigh the weaknesses, though the experts told us repeatedly that the deficits overpower the strengths for most people." Sam talked in complete and flowing paragraphs. At a florist shop, he'd name every really obscure plant. To us, that was wonderful; it should have been a sign that something was not wonderful. We were sure the strengths would outweigh the weaknesses, though the experts told us repeatedly that the deficits overpower the strengths for most people."

In fifth grade, some older boys tied Sam to a fence and left him screaming for twenty-five minutes before a teacher discovered him. He was kicked down the stairs on more than one occasion. His parents switched him into public special ed, but he didn't fit in there, either. "It was as if Sam had dyslexia in reverse; he could read and decode things without trouble, but he couldn't do anything else," Patricia said.

Sam had realized that he was gay, but was still intensely closeted in high school. Then something happened in the bathroom at school. Sam described it as "attempted rape" and said bitterly, "This bitch guidance counselor said, 'He's a senior and you are only a junior so we're not going to do anything about it.' That pretty much ruined my life." While Sam feels the episode was underplayed, his father feels it was overplayed. Winston explained that someone exposed himself and came on to Sam. Whatever happened, Sam was traumatized and began to hear voices. He said, "They were voices from my enemies at high school, and I actually went from being very peaceful to very warlike."

His family took him to a psychiatrist, but Sam did not have a flying start with medication. "Moban didn't do any good," Winston said. "Ativan helped. Risperdal, a disaster; it screwed up his coordination. Prolixin, a fiasco; he had the dry heaves all the time. Then Mellaril. The truth sunk in that this was going to be a long haul."

At the end of his senior year, Sam made his first halfhearted suicide attempt. "I pulled him out of the bathtub when he was trying to drown himself. He was probably holding his nose," Winston said. Sam seemed to function better for a little bit, but was hospitalized three years later, after a confrontation with law enforcement. "He was talking to himself and the police picked him up, and he either said, 'I want to kill somebody' or 'I want to kill myself,'" Winston said. "He was in protective custody and he exploded. Eight people descended on him, putting him in restraints, and gave him Haldol. I was helpless. He was saying, 'Give me something so I can die.' It was terrible." Then Sam entered what he calls "Fat Pig Sam Period." He explained, "I was very racist and I hated everybody. From twenty-one to twenty-four I ate nothing but junk food, about eight times a day. I was obsessed with ice hockey. I don't know what made me turn into such a horrible, disgusting, obnoxious pig, but that is what I turned into."

Winston and Patricia took Sam to visit Gould Farm, a rehabilitation facility in Massachusetts, and Sam stayed one night and then insisted on coming home, claiming the people there were "even fatter and sicker than me." The Fischers were at a loss. Sam is a one-man refutation of the Freudian tenet that understanding your behavior helps you change it; he understands what's wrong with him, which made him feel superior to the residents at Gould Farm, but he is incapable of addressing any of it, which is why he was sent there in the first place.

After his childhood focus on botany, and his pig-period fixation on hockey, Sam became obsessed with the heyday of rock and roll, a passion he shares with Winston. He hunts down vinyl versions of music long forgotten by almost everyone else and identifies the moment of receiving a record he's ordered as the only time he feels genuine happiness. But he has been banned from the Princeton Record Exchange since the day he punched one of its clerks. Winston is usually left to smooth things over. "I like our time together, but it's too much. I'm his only friend. We're reaching a state where I don't know how much longer it can go on. If we'd been able to leave Sam at Gould Farm, he might've come to an existential realization that he had to make a life or end up in a hospital, but we could never face the idea of forcing him."

Winston and Patricia try to support any interest Sam shows in other people. Sadly, this policy seems to enable some of his most troubling deficits. "We were in a record store," Winston said. "There was an album cover for The Knife, The Knife, which scared him. I managed to track down the lead singer's number. Sam established a telephone relationship with him. Sam called too often, as he always does. Usually the wife or girlfriend says, 'You have to stop letting this kid call, it's driving me crazy.' So that turned from being a sort of ideal moment where you explore the record that scared you, find the guy, and make friends, to being a nightmare that made him feel terrible about himself." which scared him. I managed to track down the lead singer's number. Sam established a telephone relationship with him. Sam called too often, as he always does. Usually the wife or girlfriend says, 'You have to stop letting this kid call, it's driving me crazy.' So that turned from being a sort of ideal moment where you explore the record that scared you, find the guy, and make friends, to being a nightmare that made him feel terrible about himself."

Sam spends his time making up rock bands and producing their album covers-drawing the art, making lists of songs, writing liner notes and lyrics. "My lyrics deal with love, hate, revenge," Sam said. "They are all homosexually oriented." Sam and I spent hours looking at his album covers. "Oblivion in Orbit. Cold realities and occasional joys of life in the British Army, of outer space, of strange phenomena, and of sex," Sam wrote on one of them. He also plays the electric guitar and has three of them.

Sam's other obsession is soldiers. "They are the one group that understand me," he said. "They look me straight in the eyes and try to make me feel unfragile, like they believe in me. Unlike my parents, who make no effort whatsoever." To Winston, the obsession is not irrational: "His fantasy is to be protected, so he was after me to help him meet soldiers." One might question the wisdom of indulging these yearnings for people who will be irritated by them, but part of the folie a deux is that Winston joins Sam in his troubled reality. "I found a job on this newspaper and realized that I could report on Fort Dix," Winston said. "They gave us a tour; he got to take pictures of the soldiers, meet and talk to them." Sam has an interest in foreign armies, as well. "When we travel to England, say, we'll board the train to Bristol and just turn him loose," Winston said. "He ends up having a great conversation with somebody in the services." Patricia is highly ambivalent about all this, but defers to it since Winston spends every day with Sam while she is at work. "Sam's psychiatrist says I have to crack down," she said. "But how do I crack down on Winston's niceness?" "His fantasy is to be protected, so he was after me to help him meet soldiers." One might question the wisdom of indulging these yearnings for people who will be irritated by them, but part of the folie a deux is that Winston joins Sam in his troubled reality. "I found a job on this newspaper and realized that I could report on Fort Dix," Winston said. "They gave us a tour; he got to take pictures of the soldiers, meet and talk to them." Sam has an interest in foreign armies, as well. "When we travel to England, say, we'll board the train to Bristol and just turn him loose," Winston said. "He ends up having a great conversation with somebody in the services." Patricia is highly ambivalent about all this, but defers to it since Winston spends every day with Sam while she is at work. "Sam's psychiatrist says I have to crack down," she said. "But how do I crack down on Winston's niceness?"

Sam calls soldiers. Winston has managed to obtain British army directories for him. "I know these soldiers are frightened, and I know that they think they are doing something important, too," Sam said. "English boys and English men are beautiful. Very nice rosy skin. The first time ever I was in love was with a British soldier. It was a very painful experience because it was love at first sight. We talked for an hour and I wanted to spend my life with him. We never saw each other again. His name was Sergeant Gibbs. I was twenty-seven and he was thirty-three. I wanted to kiss him, but he was holding a machine gun. My heart was broken after that. Our first cat died soon after that happened. It was a really difficult period." Winston explained, "There's a guy manning the gate in one of these big government buildings off Hyde Park. Sam had a twenty-minute conversation with this guy, and he only knows his last name, Gibbs. But this guy became his dream hero, as if they had an entire relationship."

"We know where Sam's military fixation comes from," Patricia said. "It is a sexual fixation and a very familiar one. But also, he thinks of himself as living in a war zone and feels these people understand what it's like to survive in war conditions. I can't believe they'll talk to him, but they do. What poisons it is that he calls again and again and again. I say, 'Write down every call and keep a schedule of when it's okay to call back.' I open a four-page phone bill, and I say, 'Don't you think you've been calling a little too often?' He explodes. 'No, I'm not, I'm not, they don't mind.'" Patricia finally put her foot down and said, "You just can't keep making these phone calls," and Sam hit her. Winston called the police. But they remain afraid that setting firmer limits will only aggravate things.

"Sam and I went to Montreal every year," Winston said. "I would take him to see the Black Watch guys play bagpipes. Six years ago, Sam asked, could he talk to somebody in the Black Watch? They sent down a guy who turned out to be gay. He and Sam kept in touch, and when we went back the next year, Sam was determined to lose his virginity. I gave him some prophylactics, and the guy was going to take him to a bathhouse. I was by the phone waiting: Will it be awful, wonderful? It wasn't anything. The guy realized he didn't want to be responsible. He's now an enemy, like everyone Sam's ever met." asked, could he talk to somebody in the Black Watch? They sent down a guy who turned out to be gay. He and Sam kept in touch, and when we went back the next year, Sam was determined to lose his virginity. I gave him some prophylactics, and the guy was going to take him to a bathhouse. I was by the phone waiting: Will it be awful, wonderful? It wasn't anything. The guy realized he didn't want to be responsible. He's now an enemy, like everyone Sam's ever met."

I met Sam for the first time over lunch in Princeton. He and Patricia had cooked together; it's their most peaceable mutual activity, and they assembled a delicious meal. Sam announced, "This was the worst winter of my whole life. I attempted suicide about six times." Patricia, who was at the table, said, "You thought about it; you didn't try." Sam said, "I had a knife at my wrists. I suffered two nervous breakdowns. I'm very sensitive to medications." "And alcohol," Patricia said. "And drugs," Winston said. "And people. And life," Patricia said. Sam receives some SSI-disability benefits-as well as an allowance from his parents and is planning a move to the UK. "But Patricia has just been a bitch! She's been the bird of doom. 'You're not going to England! Forget it!' That's all I hear from her. I've told her it would ruin my life if I didn't go this year, and it doesn't matter how many times I tell her that."

In fact, a great deal of love and insight emanates from these bewildered parents. "I don't believe in normality," Winston said. "It's just an averaging of extremes." Patricia said, "He thinks when the right records come in the mail, his problems will be solved. Or maybe he can get unstuck by moving to England. It's the lack of filters, the lack of self-control, the lack of ability to stick at anything, that's the problem. The rest of it is reality. He has no friends. He has no occupation. We're just the evidence of his dependence. If we say no to something that he wants, then it's 'You're not letting me live my own life.' When we say, 'There's nothing we would like better than to enable you to live your own life,' then it's 'You want to throw me out on the street.' He can analyze the situation just as well as I can. But it's not remediable. The hallucinations are really the least of it."

Before I left Princeton that day, I went to say good-bye to Sam. "Hey, thanks," I said. "I know it can be hard to have a total stranger come into your house and ask you all these questions." To my surprise, Sam gave me a warm hug, then looked me in the eye and said, "You didn't seem like a stranger to me." A deeply touching capacity for connection flashed in the room, and some self beneath the illnesses he had been parading seemed to touch me. Then it was gone again, lost in a monologue about a record I'd never heard of and that may not exist.

One of Sam's doctors told me that he probably has a neurological syndrome based in part on fetal development, manifesting in ways we cannot chart. The topic of diagnosis provokes a noise from Patricia that is equal measures a laugh and a suppressed sob. "It's been very difficult lately, with a lot of shouting and slamming of doors, and rising blood pressure," she said. "I'm in fight-or-flight mode, and we shouldn't be fighting and I shouldn't be fleeing. I control myself most of the time, unless I'm very, very tired. Sam's latest psychiatrist presented the case at a meeting and came back and said, 'They all agreed he needs structure,' and I looked at him like, 'What do you think I am, an idiot?' I never thought of that-Sam and structure! Come on over to our house and see if you can create any structure! We've done everything known to human beings to create structure." syndrome based in part on fetal development, manifesting in ways we cannot chart. The topic of diagnosis provokes a noise from Patricia that is equal measures a laugh and a suppressed sob. "It's been very difficult lately, with a lot of shouting and slamming of doors, and rising blood pressure," she said. "I'm in fight-or-flight mode, and we shouldn't be fighting and I shouldn't be fleeing. I control myself most of the time, unless I'm very, very tired. Sam's latest psychiatrist presented the case at a meeting and came back and said, 'They all agreed he needs structure,' and I looked at him like, 'What do you think I am, an idiot?' I never thought of that-Sam and structure! Come on over to our house and see if you can create any structure! We've done everything known to human beings to create structure."

Their progress has been to stop anticipating progress; that is its own kind of peace. "The problem," Patricia said, "is that we're growing older, and we haven't even written a will, because we don't know what to put in it. There's no one to look after Sam. My fantasy is that we'll make it until he turns fifty-five and then he can go into assisted care. So I have to keep this up into my eighties. It's particularly hard on Winston, but it's very hard on me, too. But it's worse for Sam. He picks up on the ways that we've given up, he must. He's very, very sensitive. I wish I could protect him from our despair."

Families rise to the occasion of various difficulties, struggle to love across those divides, and find in almost any challenge a message of hope and an occasion for growth or wisdom. In some instances schizophrenia and related psychotic disorders may be put into this service. Nonetheless, schizophrenia may be in a class by itself for unrewarding trauma. The rich culture of Deafness, the LPA-centered empowerment of dwarfism, the extreme sweetness of many Down syndrome children, the self-actualization of the autism rights brigade-none of this is really present in the world of schizophrenia, Mad Pride notwithstanding. We may hesitate to cure some problematic illnesses because they are also rich identities, but schizophrenia cries out almost unconditionally for treatment. The remarkable parents I met during this research would be better off, as would their children, if schizophrenia didn't exist. To me, their suffering seemed unending, and singularly fruitless.

VII

Disability