Far From the Tree

by Solomon, Andrew

  • • •

  In 1668, John Bunyan wrote, “Let them . . . recover one to his wits that was mad . . . and he that can do thus . . . shall have the name and fame he desires; he may lay abed till noon.” There was little progress between Bunyan’s times and modernity; for centuries, treatments for schizophrenia were ineffectual, barbaric, or both. In the nineteenth century, they included pulling teeth; in the middle years of the twentieth, they included lobotomy.

  The development of antipsychotic medications, beginning with Thorazine in 1950, has been a miraculous breakthrough in treating schizophrenia’s positive symptoms. Unfortunately, these medications have negligible effects on negative symptoms. As Helen Mayberg, chair of neuroimaging at Emory, said, “It’s as though you’ve got a house that’s burning down; you come in with the fire trucks and pump the place full of water; you put out the conflagration. It’s still charred, smoke-damaged, flooded, structurally unstable, and pretty much uninhabitable, even if flames are no longer licking the walls.”

  The damage done by the disease persists, and the techniques for mitigating that damage constitute their own ordeal. Thorazine flattens personalities much as lobotomy did, and while newer medications are somewhat better, the number of people with schizophrenia who go off their medications indicates how detested they are by the patients who must take them. In the 1970s, the Soviets administered antipsychotics for torture and subjugation and were able to induce symptoms of psychological disability with them. “One loses his individuality, his mind is dulled, his emotions destroyed, his memory lost as a result of the treatment, all the subtle distinctiveness of a person is wiped away,” said one survivor of such treatment at a Senate hearing on Soviet abuses of psychopharmacology. “Although I am afraid of death, let them shoot me rather than this.” A patient named Janet Gotkin described her contemporaneous treatment in the American psychiatric system in similar terms: “I became alienated from my self, my thoughts, my life, a prisoner of drugs and psychiatric mystification; my body, heavy as a bear’s, lumbered and lurched as I tried to maneuver the curves of my outside world. These drugs are used not to heal or help, but to torture and control.” Another patient said, “The muscles of your jawbone go berserk, so that you bite the inside of your mouth and your jaw locks and the pain throbs. Your spinal column stiffens so that you can hardly move your head or your neck, and sometimes your back bends like a bow and you cannot stand up. The pain grinds into your fiber. You ache with restlessness, so you feel you have to walk, to pace. Then as soon as you start pacing, the opposite occurs to you; you must sit and rest.” These accounts relate to older antipsychotics and neuroleptics, but the side effects of modern medications differ more in degree than in nature.

  • • •

  By the time I began to meet members of his family, Malcolm Pease was dead at fifty-two, but it was not yet clear why he had died. The previous twelve years had been the best of his adult life. Then one day a nurse at his group home found him curled up in what looked like a comfortable position, cold and dead. “He was very overweight,” his brother Doug said, “largely from the medication. He had a lifetime of heavy smoking behind him. Because he was young, there were police; pretty much on the spot they ruled out suicide.”

  Of seventeen children in Malcolm’s generation, siblings and cousins, four have severe mental illness. Many prefer not to discuss it, a position for which Penny Pease, Malcolm’s mother, eighty-five when he died, has disdain. “I talk about it all the time, with a lot of people,” she said.

  In high school Malcolm had no meaningful signs of illness. “He was a really good athlete,” Penny recalled. “He was a fantastic bridge player, and cribbage, and, oh, boy, was he competitive. He loved skiing; he loved everything. We had no clue.” During his freshman year at Franklin Pierce, in the winter of 1975, he began hearing voices and developing paranoid fantasies. In March, his roommate called to tell the Peases that something was horribly wrong, and Malcolm’s parents brought him home. “We knew he was in trouble,” Penny said. “He wasn’t making much sense.” His brother Doug said, “He was completely out of control, didn’t know why, and we didn’t, either.” The following November, Malcolm assaulted his father. “My parents sent him to the Institute of Living in Hartford, Connecticut, which was among the better private mental hospitals,” Doug said. “It was captivity, really. They were feeding him sedatives. Your brother is a ghost in his former body, whom you can’t reach because he’s so dulled down. The other patients look like Night of the Living Dead.” Malcolm soon signed himself out against advice, and his parents initiated a proceeding to have him committed. Over the years, he had to be recommitted dozens of times.

  When he was not hospitalized, Malcolm lived with his parents. “My parents tried to love him back to health,” said Malcolm’s other brother, Peter. But Malcolm wouldn’t stay on his medication. Their sister, Polly, said, “Once he was feeling normal, he would think, ‘I don’t need to take these anymore.’ Then you crash and burn again. And again. And again.” When he wasn’t taking his drugs, he would become paranoid. “Everybody who came near, he would think, ‘Oh, you’re just trying to put me in the hospital and force me to take antipsychotics,’” Peter said. “Of course, he was right.”

  Everyone tried to keep up as much normality as possible. “All you can do is tell him what reality is, in a loving way,” Doug said. Polly remembered, “Some of it was just funny. I remember he asked my mother where she was when Martin Luther King was shot and whether she could prove she didn’t do it.” Sometimes poetry crept in, too. When asked at one of his admissions what he was thinking, he said, “I do not like sex or French kissing. There is gas outside of the Indian Ocean, and there are diamonds up in the North Pole.” Despite the madness, he sustained a central coherence. “He didn’t disappear,” Penny said. “He still liked animals, and playing cards. He missed the friends he’d had before he became sick.” Polly said, “The thing that made him himself was always there. It just wasn’t where you could find it all the time.”

  The hospitalizations became increasingly frequent. “The ongoing discussion, year after year, was, ‘You have to stay on medication,’ and Malcolm refused,” Doug said. “Off the meds, he felt freer, more alive. Sort of high. Also mostly distraught. Would you rather be awake and alive, or a walking zombie? He would try to find the sweet spot in the middle.” When Malcolm’s father developed cancer, Peter decided that it was time to step in. “I carried the essence of who Malcolm was with me and never let who he became take that over,” Peter said.

  One of the first antipsychotics, clozapine, had been taken off the market in 1975 because it can reduce the concentration of white blood cells, a condition called agranulocytosis. Researchers eventually realized that clozapine was the most effective treatment for schizophrenia, and that for many patients its efficacy outweighed the side-effect risk. Malcolm started on clozapine when it returned to the market in 1990. Peter said, “There was always enough of who he really was for me to love, but sometimes it got squeezed rather mightily. Then with clozapine, it came back. The smile, the laugh, the sense of humor. If you know who somebody is, you can lead them back to themselves.” In his human relationships, Malcolm remained deeply caring. “He was always just worried about everybody else,” Polly said. Doug expressed enormous sympathy for Malcolm’s reality: “He always felt he had wronged people along the way. We found a letter dated 2002 from his original doctor. Thirty years later, it says, ‘Dear Malcolm, To the best of my knowledge, no, you never hurt anyone. Hope you are well. Sincerely, Dr. Koff.’” Penny said, “He never changed that way. I never loved him less because he was sick; I never loved him more; I never even loved him differently.”

  At thirty-nine, Malcolm graduated to a supported home in Framingham and got a job bagging groceries at the Stop & Shop. “That’s what he could handle, and it was awesome,” Doug said. “We were dancing in the streets.” Malcolm had done well on the clozapine for about five years, and then it all began to come apart ag
ain. “He was always tinkering with his medication,” Doug said. “He had to be hospitalized again. I was in the hospital to visit him, and the doctor says, ‘Well, Malcolm is heading home now. He’ll be just fine.’ So I take him back to Framingham. He makes a suicide attempt that evening, ingesting laundry detergent.” Malcolm was rushed back to the hospital. “It’s ridiculous to try to commit suicide by eating Tide,” Peter said. “The imagery, though, is interesting. I’m gonna wash this disease right out of my body!”

  Polly’s first husband and Peter’s first wife had been afraid of and intolerant of Malcolm, and it had created tension in those marriages, both of which ultimately dissolved. However, all of Malcolm’s nieces and nephews loved him. “He’s just his own particular strong essence,” Peter said. “There was no other weirdness going on than his being crazy. When he was well, we had great times.” Malcolm’s years in Framingham were relatively happy. He had refused to drive for decades, but after he went on clozapine, that changed, and Peter bought him a Ford Ranger. “That was one of the best days of my whole life, to see him driving out of that dealership with this huge smile on his face,” Peter said. Malcolm was beloved at the Framingham home. One of the other residents told Peter, “Every morning, Malcolm would come down to the common room and say, ‘Maurice, where can I take you today?’” Peter said, “Part of his ministry was driving people in his red truck, like a taxi service.”

  No one expected Malcolm to die when he did. Peter said, “Of course the illness reduces your life expectancy, and the medication, even though it’s helping you, reduces your life expectancy, too. But at least he got himself to the best place he could. We’ll take this death because of the quality of life he had.”

  Malcolm had been part of a McLean study on the genetics of schizophrenia. After he died, researchers there said they’d like his brain to study. Penny endorsed the idea. Doug enjoys repeating his comment at the memorial service: “Malcolm didn’t complete college because of his illness. But he finally got into Harvard, and he’s teaching the neuroscientists.” The coroner’s office took blood samples, just to rule out the possibility of wrongdoing. A few months later, the family learned that clozapine ended the same life it had redeemed. “We didn’t realize death by clozapine was even possible, but are gradually learning more about it,” Peter wrote to me. “It seems that toxic levels of clozapine built up over time because his liver was not processing it. Some have suggested to us that liver function should be tested regularly to make sure there is not a buildup in toxicity, and that this is a matter of standard practice. So it is probably a malpractice issue, which we won’t pursue. At high levels, apparently clozapine can cause heart arrhythmia, and coma/respiratory arrest. Now we are left with the final tragedy—the medications we forced him to take, which he railed against and fought with all his spirit for most of his life, killed him. It is probably good that we did not know the cause of death before we celebrated his life and had the memorial service. This news beats us down, and it is very hard to rise up singing.”

  • • •

  The liberation movements of the 1960s questioned the very concept of mental illness. Michel Foucault mounted a systematic assault on the idea that insanity was anything more than a power play by self-declared sane people. Erving Goffman maintained that mental hospitals made people crazy. R. D. Laing said, “There is no such ‘condition’ as schizophrenia but the label is a social fact and political event,” spoke of schizophrenia as a “special strategy that a person invents in order to live in an unlivable situation,” and maintained, “Madness need not be all breakdown. It may also be breakthrough. It is potentially liberation and renewal, as well as enslavement and existential death.” Thomas Szasz emerged as the great apologist for the idea that schizophrenia is always a fiction.

  The last generation has witnessed a great social experiment called deinstitutionalization, which has removed people with acute mental illness from large state institutions, reducing the number of schizophrenics in long-term custodial care in the United States from more than half a million in 1950 to some forty thousand today. This movement draws on a curious mix of valid optimism, economic expediency, and ideological rigidity. While previous treatment of schizophrenics was inhumane, current treatment is often negligible. Money and personnel were never shifted to the community facilities that were supposed to provide services after the institutions were closed; federal guidelines are incredibly vague, and oversight is virtually nonexistent.

  The vision of treatment as a mechanism of social control infuriates people who are trying to advance encompassing treatment policies. E. Fuller Torrey, perhaps the most prominent critic of the social realities around schizophrenia, has said, “Freedom to be insane is an illusory freedom, a cruel hoax perpetrated on those who cannot think clearly by those who will not think clearly.” Judge Berel Caesar wrote bitingly in 1990, “The right to treatment has become the right to no treatment,” with the result that “we have consigned many persons to lives of quiet desperation, have destroyed the mental and emotional health of those who love and care for them, and have destroyed families—to the ultimate detriment and even destruction of the disabled person.”

  The therapist Ann Braden Johnson, author of Out of Bedlam: The Truth About Deinstitutionalization, complains of “the myth that mental illness is a myth” and argues that deinstitutionalization was the result of a politics that emerged as ideas about deviants changed, which was in turn the result of the emergence of biological psychiatry, which made it logical to spend mental health dollars on something other than custodial care. Near-universal institutionalization was ruinous, but near-universal deinstitutionalization is equally bad. The schizophrenia researcher Nancy Andreasen points out that state hospitals were “small communities unto themselves, where patients lived together as a family and were given a chance to be productively employed by the hospital farm, kitchen, or laundry.” One of the new system’s fallacies is its ambition to order. “The patients I see don’t fit readily into most existing programs, and programs they might fit in simply don’t exist,” Johnson wrote. “Bureaucrats who drew up programs often have never seen a patient, much less treated one.” A vacuum of empathy exists in any system that returns people who don’t know how to be in a community to communities that may not be prepared to handle them. The lack of support and erratic access to medication often result in rapid deterioration, but family members who attempt to arrest that are frustrated by the courts. The elderly father of one schizophrenic said, “The authorities say it is their choice and their right to live like stray animals. Why is rapid suicide illegal and gradual suicide a right?”

  • • •

  When Madeline Grammont’s brother William began to act erratically, their father refused to acknowledge what was going on. William had earned a perfect score on his math SATs and had been admitted to Harvard as a sophomore. By the end of his junior year he had to leave. “My father was mortified,” Madeline said. William went up to his family’s country place in New Hampshire. “He was subsisting on raw garlic and had knives sitting everywhere,” Madeline said. “He was sleeping on the floor. My father found a small house for him in the woods, away from the summer community, so no one would see him. In fact, my father saw him only three times in thirty years.” Once a week, William walked down to the town general store, usually clothed in just a towel, talking to himself; local teenagers would taunt him. His father maintained that he was just a touch eccentric, but his sister worried, and as their domineering father grew feeble in old age, she went up to see William. “Mice and rat turds everywhere, mayonnaise jars opened and rotting,” she said. “Broken dishes everywhere. His bedroom was truly disgusting. He looked at me curiously, but he had lost his language. He made little squeaking sounds, and that was it.”

  So Madeline took over the case. She sought legal guardianship, obtained a diagnosis of schizophrenia, and brought him to a residential care center. There he began using rudimentary speech again. “I brought him flowers once—some
lilies—and he leaned over and smelled them,” she said. “I brought them every single time thereafter and I still do. I take him out every two or three weeks. He can’t initiate conversation and he talks very little, but he seems increasingly able to understand. He basically saw his first treatment at age fifty-two. That kind of denial, the way my father was—it ate him alive, and now he’s just a hollow wreck. A whole life slipped away, that didn’t have to.”

  • • •

  The brain is composed of grey matter, made of cell bodies; white matter, the axons that connect the cell bodies and create synapses; and ventricles, fluid-containing spaces that allow for circulation of the cerebrospinal fluid. When you lose brain tissue, you have bigger ventricles, and a cardinal feature of schizophrenia is enlargement of the lateral ventricles. While autism is characterized by an overabundance of synaptic connectivity, schizophrenia is marked by a dearth of it. People with schizophrenia also have fewer dendritic spines, which form synapses, and fewer interneurons, a type of brain cell that regulates mental activity. The positive symptoms of schizophrenia appear to be tied to abnormalities in the temporal lobe, where auditory and emotional perception are located. The negative symptoms appear to be tied to damage to the frontal and prefrontal lobes, where cognition and attention are based.

  Genetic vulnerability to schizophrenia is subject to precipitating traumas, including variations in the uterine environment. Obstetrical, labor, and delivery complications are bad for a developing fetal brain, and schizophrenia patients are more likely to have a history of them. Maternal infections such as rubella and influenza during pregnancy also increase risk; the high rate of winter births of people who develop schizophrenia is probably linked to increased second-trimester maternal viral infections. Stressful events during pregnancy have been correlated with schizophrenia; the rate is higher, for example, for children of women who lived through a military invasion while carrying, or whose spouses died during their pregnancies. Famine in Holland during World War II led to a dramatic increase in the incidence of schizophrenia twenty years later. Scientists have proposed that prenatal stress results in the release of hormones that disturb fetal neurodevelopment; stress can activate the mother’s dopamine system, and that may dysregulate the fetus’s.