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A Hopeful Voice - A powerful, first-person account describes one man's three-decade struggle with and eventual recovery from schizophrenia
Schizophrenia Update, January 2003
The Day the Voices Stopped; A Memoir of Madness and Hope (Review)
BYLINE: ANNIBALI, JOSEPH
If you want to journey inside a mind tormented by schizophrenia, read The Day the Voices Stopped. As William Styron did for severe depression in Darkness Visible, and Kay Redfield Jamison did for manic depression in An Unquiet Mind, coauthors Ken Steele and Claire Berman have written a firsthand account of Steele's three-decade struggle with chronic schizophrenia and his remarkable recovery when a new medication stopped the hallucinatory voices. After his condition improved dramatically, Steele devoted himself to improving the plight of the severely mentally ill, becoming a nationally recognized advocate. He intended that this story of courage and recovery would give hope to those who suffer from similar illnesses. Although this is a remarkable book, I believe that it is overly optimistic about the current prospects for recovery from severe mental illnesses such as his.
Ken Steele, an apparently normal boy in a blue-collar family in Connecticut, was fourteen when his auditory hallucinations started, without warning. He began to hear insistent, taunting voices, commanding him to kill himself: "Hang yourself," they told him. "The world will be better off. You're no good, no good at all." Through nearly 250 pages Steele assaults the reader relentlessly with descriptions of the voices that commanded and taunted him. Together with other descriptions of his suffering, the impact is at times mind numbing. Not until near the end of the book (and his life), when new medication finally helped him, is Steele given more than a moment's respite.
The Day the Voices Stopped straightforwardly presents his deteriorating world and descent into psychosis. At first he began to have difficulty differentiating what was happening outside himself from what was happening within. For example, at times he perceived his voices as coming from the television. During his mother's pregnancy he believed that his unborn brother was speaking to him directly from her womb. He became isolated from friends and family.
Eventually, in response to the continued self-destructive demands of the voices, he attempted suicide for the first of many times. Denying the illness, Steele's father refused to allow his son to be hospitalized. Steele's condition continued to deteriorate. Though he was unusually bright and loved reading, he dropped out of school. Tension with his father increased. Needing to get away but still very ill, at age seventeen Steele left home for New York City, never having visited there before and without a job. It's rather obvious that he was trying to escape his family, who could neither understand nor help him.
New York City is no escape
Not surprisingly, soon after arriving in New York, he met a helpful stranger who turned out to be a homosexual predator and pimp. Steele was exploited sexually and began working as a hustler. When the voices commanded him to commit suicide by jumping off a tall building, he was apprehended by the police and sent to the first of many state hospitals. There are numerous heartrending reports of the well-intended but often horrendous treatment in these facilities. On page after page Steele describes months of seclusion, restraint, and horrible medication side effects. In one hospital, he was attacked by other patients, bound, gagged, and raped by several men. His injuries in this attack were so severe that he needed major surgery.
Many readers will react with sorrow and despair to the descriptions of Steele's illness, his apparent inability to get good, consistent, helpful mental health care, and the reports of frank neglect and even abuse at the hands of those who were supposed to be his caretakers. He often felt alone and abandoned, at times living as a street person. His parents never visited him in the hospital. He became more and more depressed, went in and out of various hospitals, suffered severe side effects from antipsychotic medications, and wandered from city to city, all across the United States. The pattern he reports in each location was similar: When his psychosis flared up, he would be hospitalized against his will. He would be forced to take medication that was ineffective, which would be followed by severe side effects, and he might be assaulted by staff, patients, or the police. Often he returned to the streets, living as a homeless person, working now and then as a prostitute. Depression and suicide were companions as dependable as his ever-present voices.
Steele states that living on the street often was preferable to being treated in deplorable state facilities. He comments that some staff members were dedicated to keeping patients hospitalized indefinitely as a means of retaining their jobs. He also reports that the hospital staff encouraged ethnic tension, often leading to violence.
Eventually, Steele found that alcohol muffled his voices, but he drank excessively and became addicted to alcohol. His overall health deteriorated. Heavy smoking took a toll on his lungs; he developed severe asthma and required treatment with steroids. While improving his breathing, the steroids caused his weight to balloon to more than four hundred pounds. The obesity precipitated severe sleep apnea. Eventually, Steele's psychiatric disability was joined by a physical incapacitation. He could hardly move around.
Recovery on Risperidone
Ultimately, Steele came under the care of a good therapist, who referred him for a psychiatric consultation. The psychiatrist placed Steele on Risperidone, one of a new generation of antipsychotic medications. His voices ceased for the first time, after more than three decades as unwanted residents of his psyche.
Steele's descriptions of the challenges he faced as he recovered are poignant. Initially, he was confused as he struggled to make sense of the voices' disappearance. He lamented their loss, wished for their return, even felt abandoned. At other times, he worried that the voices were tricking him, lying in wait to catch him off guard. He felt bombarded by the everyday noises that they previously had masked.
After the voices stopped, Steele was aware that people saw him as a grown man but that he felt like a child. Ordinary tasks, such as organizing his kitchen, were great challenges. Steele writes with authority about the pernicious effects of chronic dependency on the mentally ill: "Things that most people pick up through life experience have to be taught to those of us whose primary residence, for years, has been our inner world. When we reenter 'the real world,' it's like stepping into foreign territory." The freedom feels threatening: "During the first few months of being well, many people who have suffered from hallucinations quickly get unwell. System addiction is often the cause. It needs to be recognized so that it can be addressed and combated."
Work as an activist
An important part of Steele's life story is his long-standing interest in and involvement with community activities to benefit the mentally ill. Even before his recovery, he was appointed to and served on panels and advisory committees in Hawaii and San Francisco. In New York City he started a voter empowerment project for the mentally ill population. Once he recovered on the Risperidone, as Steele writes, "I vowed that I would use my own voice, in whatever ways I could, to make life better for myself and others who struggle, each day, to survive schizophrenia, and other devastating diseases of the mind. I would listen to, and learn from, the voices of other mentally ill people and their families. Working together, we could make a difference. And we would be heard."
Steele took over as editor of a mental health newsletter and renamed it New York City Voices: A Consumer Journal for Mental Health. "My hope was that voices could now become a positive noun--one that clarifies distortion instead of the other way around," he writes. The newsletter has informed readers about political and legislative issues, such as parity legislation. Additionally, it has printed individual stories about recovery and empowerment. Writes Steele: "I strongly believe that recovery and empowerment are possible for everyone with a mental illness, which is why it is important for us to reach out to one another with information and strategies for coping in the world of the 'normals.' "
In response to many requests for assistance that were pouring into New York City Voices, Steele started an information and referral service. He began to speak about mental illness and recovery before lay and professional groups and started a recovery support group that met in his home, noting that the group filled his own need for support as well as the needs of others. He spoke around the country, spreading the message that "recovery from mental illness is possible and that people suffering from mental illness need to be understood and assisted, not feared and avoided." The New York Times ran a front-page story about him in early 1999. With his therapist, he appeared in a Voice of America broadcast that brought in requests for information from all around the world.
Steele fought stigmatization and injustice in the treatment of the mentally ill. He writes: "There are now far more mentally ill people in the nation's jails than in state hospitals--people arrested for shoplifting, intoxication, fare-beating, living on the streets. More than 300,000 mentally ill people are in our jails and prisons, five times as many as are being treated in our state hospitals. Many would never have been incarcerated if there had been adequate community caring ... and care."
A vision of the future
He ends the book with this quote: "I have a vision that goes like this: In a new century, mentally ill people will have the science, the organized voting strength, and the means to leave our ghettos of isolation behind us. We will finally join with the mainstream community, where we'll be able to live as independent individuals and not as a group of people who are known and feared by the names of our illness."
Unfortunately, Steele's vision will be difficult to attain. He is correct in claiming that society views those who are mentally ill and homeless as a "throwaway population." Society seems unwilling to devote adequate financial resources toward caring for the severely mentally ill. Fairfax County, Virginia, where I live and practice, tops many lists as being the wealthiest county in the United States. Yet, I know firsthand from my work in mental health centers here that funding is inadequate, waiting lists can be long, and patients are often forced into group treatment because groups are cheaper than individual care.
Also, not every patient responds as positively as Steele did to the newer antipsychotic medications. Just recently, we have been learning that these medications may have serious side effects that previously were not well known. Many of these newer drugs are quite expensive and may not be covered by managed care. The patients who need them the most--those chronically disabled by psychiatric illness--are the very ones who are not working and lack the resources to pay for these drugs. Our society cannot legally force treatment on most severely ill people unless they are imminent dangers to themselves or others. Sadly, their illnesses often distort their thinking, making them run away from treatment. Many "street people" are severe mentally ill and refuse treatment for their illnesses.
As a practicing psychiatrist, I believe that the book's description of Steele's illness is one-dimensional. By the authors' report he was diagnosed with schizophrenia, and I accept this diagnosis. Schizophrenia is not just about auditory hallucinations, however. There typically are accompanying signs of psychotic illness, such as difficulties with thinking, delusions, and so-called negative symptoms. Although these other symptoms are alluded to, an unsophisticated reader might be left with the impression that the essence of schizophrenia is auditory hallucinations. This is not necessarily true. And if I may be permitted a quibble, the title of the book, The Day the Voices Stopped, while catchy and evocative, is misleading. Most of the book is about the periods before and after the cessation of voices, not the "day" referred to in the title.
Also, for the sake of balance, I need to mention that Steele and Berman present a one-sided view of treatment in state hospitals. The authors may give the uninitiated reader the impression that all state mental- health institutions are snake pits, run by venal individuals who are unconcerned about the welfare of their patients. I will acknowledge that there are some less-than-stellar facilities in this country, but most are not as bad as the book may imply. Furthermore, Steele does not emphasize enough that severe psychotic states often lead to perceptual distortions and resulting behaviors that predispose these individuals to the kinds of bad experiences he reports. When an individual with such predispositions enters an overworked and understaffed legal or mental health system, the results can sometimes be tragic. If accurate, there is no justification for the abuse and neglect that he describes. Still, it is not just a bad mental health system but these illnesses themselves that contribute to unpleasant and unfortunate treatment experiences like Steele reports.
Additionally, the point of view presented lacks a sense of the emotional complexity and nuance that exists in human life. If we lack a complex view of the psychic functioning of humans--individually and in groups--we cannot understand why human conflict is so universal. It is typical of individuals, when they come together as groups and even societies, to regress, to view the world in simple black-and-white terms, as all good or bad. This is a primary cause of racism, religious intolerance, and discrimination in general. Those groups discriminated against, whom we exclude and extrude, typically are those "different" from the rest of us. To put it simply, we want to get rid of those who are different from us. We even need groups who are different from us, and the mentally ill easily fall into that category. This universal human tendency, which the book does not acknowledge, will be a fundamental impediment to attaining Steele's vision.
The need for care and support
Despite these drawbacks, I know of no other book that so intimately portrays the day-to-day, moment-to-moment, reality of someone who has been hallucinating for so many years. For this description we should be grateful to the authors. Also, Steele and Berman provide an equally compelling account of the nature of treatment in the state hospital system, where many patients like Steele end up. While my own professional experience suggests that their descriptions of deplorable institutional treatment are not universally applicable, the pictures they paint are ugly, and we need to look at the situation with our eyes wide open.
Further, Steele writes thoughtfully about the problems of dependency that eventually trap these chronically ill, severely disturbed, patients in a web of poor functional capacity from which there is no escape. Finally, he writes movingly about the role of social support in recovery. I recall during my own psychiatric training that an eminent senior psychiatrist said that the best thing we could do for many of our most severely disturbed patients was to send them to an Alcoholics Anonymous meeting, whether or not they were alcoholics. He thought that the social support people get in AA was more helpful and powerful than the drugs and other treatments we then had available.
Steele did accomplish much, but he died of cardiac failure on October 7, 2000, just prior to his fifty-second birthday. Sadly, his new voice, of determination, dedication, and self-possession, was silenced when he had much left to say. Steele was a man on a mission, a man with a prophecy of hope and recovery. We need prophets: they show us where to aim as individuals and as a society. I hope that he will not have been a lone voice crying in the wilderness. His book will give hope to those who suffer from serious mental illness.
Some individuals and their families who read this book will be disappointed because they cannot and will not recover to the extent that Steele did. The problems they (and we) face in combating these serious conditions are complex. In my professional experience, there are no easy answers. In the future, Steele's belief--that all who suffer from severe mental illness can recover as he did--may be borne out. In the meantime, the severely mentally ill will benefit through the social and political empowerment that he advocated. Moreover, we all will benefit from his reminder that when patients are under the care of professionals, the professionals really ought to care. In our fast-paced world of managed care and managed everything, caring is often lost.