Elyn Saks feels right at home on the University of Southern California campus. There is something about the leafy-green trees and ivy-covered walls, the slate-roofed buildings, and the perpetual warmth of the California climate that has put her at ease almost from the start. But even here in this academic cloister, where her office is cluttered with her legal research, where she holds an endowed professorship of law, and where she has earned the admiration of her peers, the same old voices keep drifting in. She hears them two or three times a day, bearing messages that she would rather keep at bay.
You are bad. You are evil. You have killed thousands of people with your thoughts.
She has been receiving these messages for much of her life, certainly since her days at Vanderbilt, where she graduated first in her class but sometimes alarmed her friends and fellow students with behavior that seemed far more than peculiar. She didn’t yet know, when she was still an undergraduate, that she was falling into the grip of schizophrenia, and that her “journey through madness,” as she would later put it, would be unbearably painful and long.
There was the night at Vanderbilt, for example, a frigid winter evening when the ground outside was covered with snow. Saks was talking with a visitor in her dorm, when suddenly and without any warning, she grabbed a blanket and rushed outside. She ran manically across the lawn, spreading her arms and pretending to fly.
“No one can get me!” she shouted in a frenzy. “I’m flying! I’ve escaped!”
Later she said it was all just a joke, just a moment of silliness that had swept her away. But the episodes grew worse over time, particularly after she left Vanderbilt in 1977 and entered the master’s program at Oxford University. She had won a Marshall Scholarship to study in England, but something was unsettling about the move, and soon she found that she was losing her grip. She began handing in papers that were masses of gibberish, and muttering to herself as she walked through the town: I am a bad person; I deserve to suffer. People are talking about me. Look at them; they’re staring at me.
She soon wound up in a mental hospital, and many years later she wrote down her memories of those times: “In my fog of isolation and silence, I began to feel I was receiving commands to do things—such as walk all by myself through the old abandoned tunnels that lay underneath the hospital. The origin of the commands was unclear. In my mind, they were issued by some sort of beings. Not real people with names or faces, but shapeless, powerful beings that controlled me with thoughts. … Walk through the tunnels and repent. Now lie down and don’t move. You must be still. You are evil.”
All of that was nearly 30 years ago, and in the time since then Saks has pulled herself from the cold and terrifying depths of her illness to build a distinguished career as a scholar. She is happily married and surrounded by friends, and a visitor to her office at the University of Southern California will encounter little evidence of the agony she’s endured. But she recently decided to write it all down, to create a memoir of her own psychosis, believing that it might give hope to other people. Her powerful book The Center Cannot Hold was published by Hyperion in the summer of 2007, and within a few weeks the praise was pouring in.
Publisher’s Weekly called the book “engrossing.” The Washington Post praised Saks’ “lucidity and intelligence.” Time magazine selected her story as one of the 10 best books of 2007. But at least as important in Saks’ own mind was the warm response of her colleagues and friends. She had felt she was skating where the ice was thin, where the people she knew might easily be repelled, and where the university that had nurtured her career might find her revelations embarrassing. But none of that happened. Instead, people praised her honesty and courage, and marveled at the simple power of her story. And her memoir does have a strength all its own—a journey of suffering and a road to recovery that will probably never quite come to an end; a passage through a schizophrenic nightmare that is far more common than many people know.
But hers, in the end, is a story of hope—of “a brilliant mind,” as Time magazine put it, that with love and therapy and the right kind of medicine finally, painfully learned to heal itself. There was a time, however, when it was hard to believe that such a triumph could occur.
The worst of it came when she entered law school.
After four years of study, she had received her master’s degree from Oxford and decided to take on the challenges of Yale. Her illness, at best, was still unresolved. She had already spent months in a mental hospital, and then in intensive psychoanalysis. But in between her bouts of psychosis, she managed to do well enough in her studies to be accepted at the law school of her choice, which turned out to be Yale. She arrived in New Haven accustomed to academic success, but knowing also that changes in her life often triggered major problems—a powerful feeling of dislocation that would degenerate into a break with reality.
Sure enough, within two weeks of her arrival at Yale, as she walked among the great gothic buildings with their stained-glass windows and drafty hallways, she began having thoughts that were not her own, and began seeing people who were not really there. One of them was a bearded man with a knife who was ready to kill her. On an autumn weekend in 1982, with her symptoms getting worse, she made her way to the student health center, babbling wildly to anyone who would listen. There’s the killing fields. Heads exploding. I didn’t do anything wrong. They just said ‘quake, fake, lake.’ I used to ski. Are you trying to kill me? The doctors tried to reassure her, but she pulled away and crawled under a desk, moaning softly as she rocked back and forth. They’re killing me. They’re killing me. I’ve got to try. Die. Lie. Cry.
They sent her off to another mental hospital, where she lay for 30 hours on one of the beds, her arms and legs bound by restraints and a net tied over the rest of her body. She found that she couldn’t move at all, and no matter how desperately she begged for relief— “Please,” she cried, “it’s not necessary”—the doctors assured her that this was really best.
A quarter century later she remembers that medieval moment as clearly as if it had just happened to her, and her anger still ripples through the pages of her memoir: “As frightened as I was, I was equally angry, and frantic to find a way to show defiance—not an easy task when you’re in four-point restraints and pinned under a tuna net. I was bound … but not gagged! So I inhaled as deeply as I could, and started belting out some beloved Beethoven. Not, for obvious reasons, Ode to Joy, but Beethoven’s Fifth Symphony. BA-BA-BA BA! BA-BA-BA BA! Look, there, see how he created such power out of those four simple notes! It echoed nicely down the halls, so I did it again.”
Her brother, Warren Saks, came to visit her a few days later, and he was stunned to see how awful she looked—gaunt and wild-eyed with her hair all askew, and so thin it was startling. She had always been tall, nearly 5-foot-10, and sometimes under-weight, but nothing pre-pared him for the pain in her face. “It was frightening,” he remembered. “It was really clear how sick she was.”
For a younger brother who had always loved and admired his sister, who was astonished by her brilliance and moved by the warmth she showed to other people, it was nearly too painful to see her this way. And yet even then, he couldn’t really grasp the depths of her agony or the fundamental gloom of her official prognosis: “Grave,” one doctor wrote at the time. “Chronic paranoid schizophrenia with acute exacerbation.”
For much of the medical community in the 1980s, such a diagnosis was more like a death sentence or, more precisely, the prediction of a life without any hope. Her condition was one that didn’t have a cure, a chemical malfunction afflicting her brain that would sever her ties to the rational world, in a sense to the world of physical reality, where most of the human population lived. She might well spend her life under lock and key, and whenever her symptoms spiraled out of control—when she began to talk about killing or tried to run away—there would be no choice but to tie her down, fill her full of drugs, and wait for the terrible moment to pass.
Such was the view of her doctors at Yale.
The fact that Saks has defied those predictions is a testament in part to her stubbornness and will. But it was a facet of her character often played out in double-edged ways—in a refusal at first to believe she was sick, which sometimes made her resistant to treatment, even as it kept her from ever giving up. She was determined, for example, during her slides into madness, not to let go of her academic work, her studies of philosophy and the law, and later her teaching, writing and research. She had grown up in Miami in a strong Jewish family, among people who managed to build meaningful lives, and it seldom occurred to her not to do the same.
It was true periodically that the agony of her illness would sweep her away, that the voices and thoughts taking hold of her mind would become so powerful and so terrifying that she was reduced to desperation and despair. But when the antipsychotic drugs did their job, turning down the volume to give her some relief, she would find a part of herself still intact—still determined to find fulfillment in her work, and still tied to her family and her circle of friends.
And yet, for Saks, the issue of her medication was a problem. It was clear to her doctors that she simply had to have it, for that was the nature of schizophrenia itself: a chemical imbalance affecting her brain. But Saks saw pharmacology as a crutch—a view that may have been a throwback to the anti-drug messages she had listened to in high school. In those days of chemical experimentation, when she and her peers were getting into trouble, Elyn accepted the mantra of drug counselors that a person had to have the strength to stay clean. It was a matter of will more than anything else. And later in her life, when schizophrenic notions invaded her brain, her greatest fear was not that she was ill, but that she didn’t have the strength to repel them.
“I truly believed,” she would write in her memoir, “that everyone had the same scrambled thoughts that I did, as well as the occasional breaks from reality and the sense that some unseen force was compelling them to destructive behavior. The difference was, others were simply more adept than I at masking the craziness and presenting a healthy, competent front to the world.”
And others, of course, managed to do it without the help of medication.
Eventually, however, after years of suffering, her resistance wore down. Again and again, whatever her doctors’ choice of drugs, she would try to wean herself from their prescriptions. And again and again she would fall apart. But finally in California, she was introduced to clozapine, a drug developed in part through the studies of Dr. Herbert Meltzer of Vanderbilt, and it has worked well for her—for the most part, keeping her psychotic symptoms at bay.
Through it all, she also has relied on psychoanalysis, which she says is not typical of schizophrenic patients. Many psychiatrists, Saks explains, believe her particular form of mental illness is basically “a random firing of neurons,” producing jumbled thoughts that are beyond the reach of any kind of rationality. And indeed, when Saks began seeing an analyst in Oxford, the first few sessions were downright scary. As she remembered it later, despite the fact that she had never been violent, she carried a box cutter inside her purse, as well as a kitchen knife with a serrated blade, and warned the analyst that she had better watch her step.
“You are an evil monster,” Saks hissed, “perhaps the devil. I won’t let you kill me. You are evil, a witch. I’ll fight.”
But the analyst was calm, and session after session, day after day, she pushed Saks to confront her most frightening thoughts. For Saks the effect was strangely reassuring, a gradual discovery that she had found a safe place to deal with her illness. Thoughts that she had simply tried to repress were now being dissected and robbed of their power—and her analyst, always firm and professional, never seemed to be repelled.
Even today, with her life going well, she sees an analyst five mornings a week, sometimes sorting through psychotic thoughts, other times talking about ordinary things, the routine ups and downs of her life.
“I’m a lifer,” she says of her therapy. “I’m just too scared to get out of it.”
And so it appears that after a long and difficult journey—from Vanderbilt to Oxford and then to Yale, from a teaching job at a Connecticut law school, and finally to the University of Southern California—Saks has found the tools she needs to survive: a blend of medication and psychoanalysis. But there have been other ingredients in her healing also, things as ordinary as they are indispensable. One of those is a strong circle of friends, people like Scott Altman, a law school colleague, who works in an office just down the hall.
Altman met Saks in 1989, just after her arrival at USC, and he found her fascinating from the start. She was tall and very bright, with a long, angular face that seemed to break easily into a smile. He says he had no inkling of her mental illness, though in retrospect there were a few things that might have made him wonder. Saks seemed extraordinarily shy and delivered her lectures in class sitting down, as if she didn’t want to call attention to herself. But she was brilliant in her course on mental health and the law, and in all her discussions with her students and peers, Altman was struck by what he later called “her careful, thoughtful intellectual contributions.”
He knew that she worked exceptionally hard. Between 1989 and 2002, before she started writing her personal memoir, she published three scholarly books and contributed chapters to at least three more, all the while writing more than 30 different articles for legal, psychiatric and medical journals. For all of that she was rewarded by the University of Southern California with a special appointment as Orrin B. Evans Professor of Law and Psychiatry and the Behavioral Sciences. But to her friends in California, the most impressive thing about Saks is something from a more everyday realm: her simple ability to be a friend.
“Elyn makes many friends,” explains Altman, “and usually keeps track of them forever. She is very funny and laughs easily at other people’s jokes. But in difficult times, when people around us go through deaths, divorce or cancer, Elyn is almost always the most aggressive about reaching out. She visits people in the hospital or whatever, and never shies away from those circumstances.”
For all of those reasons, Altman and others took it in stride when they encountered one of Elyn’s psychotic breaks. They were becoming less frequent by the time she arrived in Southern California, but then one day in 1999 she learned in the course of a routine physical that she had breast cancer. The irony of it was, the diagnosis came as she was getting engaged. She had met Will Vinet, a law librarian at the university and a man of optimism and talent, who wore his hair in a ponytail and loved to play music, cook gourmet dinners, and build fine furniture with his own hands. Elyn had made many friends through the years, but after meeting Will she realized she had never been in love. And now at the pinnacle of her own good fortune, she was suddenly confronted with the possibility of death. When she heard the diagnosis, something snapped inside her, and she began to babble once again in a free association of schizophrenic thoughts.
Fleeces and geeses and astronomical proportions with people growing tumors. It’s a growth industry.
As it happened, a friend was in the doctor’s waiting room, a Los Angeles psychiatrist named Esther Fine. She took Elyn into her arms and told her gently, “Oh, honey, it’s going to be all right. You’re in good hands.”
The psychosis passed more quickly this time, and after surgery and radiation, the cancer also has remained in remission. Elyn married Will, who remains a stabilizing force in her life, which is, she says, richer and better than it has ever been. But she also knows, probably better than most, that things can always blow at any seam.
It is a December morning in Southern California, and Saks is working alone in her office. As always, there are the stray and random schizophrenic thoughts—You are evil. You have killed many people. But she has learned over time to take them in stride, to treat them merely as the symptoms of an illness, no longer as crippling as they were in the past. She is focused instead on her legal and psychiatric scholarship, surrounded everywhere by mountains of paper. She has embarked on a study of high-functioning people with schizophrenia, searching empirically for the keys to their success, and she wants to study ways to help mentally ill people seek treatment.
There are also issues of mental health and the law—the use of physical restraints in hospitals, the right of patients to refuse medication—and all of these studies add a feeling of structure and purpose to her life. Most weeks, in fact, she works every day, chipping away at her projects, but taking frequent breaks to call her friends on the phone. She talks every day to Stephen Behnke, with whom she wrote her first book, and to her LA friends like Janet Smith and Esther Fine. And of course there is Will.
“My true love,” she calls him. “He gives my life a meaning that I never thought possible.”
But there is also the haunting reality of her illness, a reality, she knows, that will never go away. “I feel sad,” she admits. “So many years of so much pain.” And yet she believes her story offers hope, and she is now happy to have shared it with other people. There is a sturdy consolation in that—for her, another source of meaning and strength, still another reason to keep pushing on.
Elyn Saks delivered a talk as part of the Chancellor’s Lecture Series at Vanderbilt on March 20. See a podcast of her lecture at www.vanderbilt.edu/news/lectures.
© 2013 Vanderbilt University
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Dr. Herbert Meltzer understands as well as anybody the terrible, crippling power of schizophrenia. The Vanderbilt professor of psychiatry and pharmacology, a prize-winning researcher in the field of schizophrenia, says it afflicts about 1 percent of the U.S. population. Of those who suffer from its effects, only about 15 percent “are able to work at all.” Those who function as well as Elyn Saks, people who have built for themselves a highly successful and deeply satisfying life, represent “probably less than 1 percent,” he says.
Schizophrenia, Meltzer explains, is a brain disease marked by delusions and hallucinations that come and go and, in many cases, by a more enduring impairment of memory, cognition and motivation. The delusional symptoms are the most dramatic, but the easiest to treat. For the most part—despite some occasional problems with memory—Saks’ illness has consisted primarily of her periodic breaks with reality. As terrifying as these episodes can be, she has found herself able to function in between.
Her episodes have grown shorter and less severe as she has aged, partly because that’s the nature of her illness, but also because of the drug clozapine, on which Meltzer has done extensive research. Meltzer, who has an undergraduate degree from Cornell, an M.A. from Harvard, and an M.D. from Yale, came to Vanderbilt in 1996. He had been studying clozapine since the 1980s, and in 1989 his work led the Food and Drug Administration to approve its use in the United States.
As he continued to study the drug, Meltzer proposed a new theory about how it works—“its mechanism of action.” The theory, he says, “was valid enough to lead to the new generation of clozapine-like antipsychotic drugs, such as risperidone and olanzapine, which are now the most widely used drugs in the treatment of schizophrenia.” In 1993 he reported research results that showed clozapine was the first antipsychotic drug to improve some of the cognitive impairment in schizophrenia. Additionally, he reported, clozapine could reduce the risk for suicide attempts and completed suicide among people with schizophrenia by about 85 percent. Suicide claims the lives of about 5 percent of all people with schizophrenia.
The downside of the drug has been its potential to damage white blood cells, which can be fatal, so it requires careful monitoring.
But Meltzer is pushing ahead with his studies.
“Our basic research,” he explains, “is leading to an understanding of why clozapine improves cognition and the classical antipsychotic drugs do not. About 5 percent of patients with schizophrenia use clozapine. It is not more widely used because of its side effects. It is, however, the most widely used antipsychotic drug in China.” Meltzer’s new research is leading to the possibility of achieving the benefits of clozapine with other drugs, or using lower doses of clozapine and augmenting its key pharmacologic feature with another drug he has helped to develop, pimavanserin.
As the case of Elyn Saks demonstrates, Meltzer’s research offers an ongoing hope in the treatment of this debilitating illness.
Elyn Saks (left) with her brothers and cousins during a family beach vacation.
At her 1977 Vanderbilt graduation, with philosophy professors Donald Sherburne (left) and John Lachs (right) and their wives, Elizabeth Sherburne and Shirley Lachs.
Elyn with her parents.