Bedlam: An Intimate Journey Into America's Mental Health Crisis

by Kenneth Paul Rosenberg

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Author: Kenneth Paul Rosenberg

Publisher: Avery

Hardcover:
ISBN 10: 0525541314
ISBN 13: 978-0525541318

A psychiatrist and award-winning documentarian sheds light on the mental-health-care crisis in the United States.

When Dr. Kenneth Rosenberg trained as a psychiatrist in the late 1980s, the state mental hospitals, which had reached peak occupancy in the 1950s, were being closed at an alarming rate, with many patients having nowhere to go. There has never been a more important time for this conversation, as one in five adults--40 million Americans--experiences mental illness each year. Today, the largest mental institution in the United States is the Los Angeles County Jail, and the last refuge for many of the 20,000 mentally ill people living on the streets of Los Angeles is L.A. County Hospital. There, Dr. Rosenberg begins his chronicle of what it means to be mentally ill in America today, integrating his own moving story of how the system failed his sister, Merle, who had schizophrenia. As he says, "I have come to see that my family's tragedy, my family's shame, is America's great secret."

Dr. Rosenberg gives readers an inside look at the historical, political, and economic forces that have resulted in the greatest social crisis of the twenty-first century. The culmination of a seven-year inquiry, Bedlam is not only a rallying cry for change, but also a guidebook for how we move forward with care and compassion, with resources that have never before been compiled, including legal advice, practical solutions for parents and loved ones, help finding community support, and information on therapeutic options.

Review

*A BookAuthority Best New Mental Health Book*

“Bedlam captures the nuance and tragedy of America’s current mental illness crisis better than any book I know. The seriously mentally ill individuals who become homeless and incarcerated are not merely numbers but come alive in Dr. Rosenberg’s telling.”—E. Fuller Torrey, MD, author of Surviving Schizophrenia and American Psychosis

“The definitive book on serious mental illness and how we treat it-and more often fail to treat it-today. A source of comfort, as well as of up-to-date information, for people with mental illness and those who care about them, and a call to action for the nation.”—Peter D. Kramer, Emeritus Professor of Psychiatry and Human Behavior at Brown University and author of Listening to Prozac and Ordinarily Well

“Brutal and beautiful. Finally, a book that explains serious mental illness to the public and deciphers the madness of America’s mental health care delivery system. One of the most important books of the year.”—Linda Rosenberg, President and CEO, National Council for Behavioral Health

“Bedlam moves in gentle and revelatory proximity to people striving to survive one of America's worst public policy mistakes. Dr. Ken Rosenberg's gifts as a reporter and bold storyteller are a godsend to the 1 in 5 American families grappling with serious mental illness.”—Sally Jo Fifer, President and CEO, Independent Television Service (ITVS)

“Bedlam blazes new ground in that it shows all the multifaceted problems faced by the seriously mentally ill using their own words and experiences. It then brilliantly interweaves their narratives with savvy policy prescriptions.”—DJ Jaffe, Author of Insane Consequences and Executive Director Mental Illness Policy Org.

“Bedlam strips bare America’s mental health care system and serves as a much-needed roadmap. Read it if you or someone you love needs help. Read it if you care about the one-in-five Americans with mental problems. Read it and advocate for reforms.”—Pete Earley, author of Crazy: A Father’s Search Through America’s Mental Health Madness

“Bedlam not only captivates us as outside observers to this inner world, but also tugs at the rawest of human emotions.”—Travis Parker, M.S., L.I.M.H.P., C.P.C., Program Area Director at Policy Research, Inc.

“The United States has become the worst place in the world to have a severe mental illness. Ken Rosenberg describes this American nightmare with the stark vividness of painful first-hand experience--as brother, as psychiatrist, and as visionary documentary film maker who explains how we got into this barbaric mess and suggests common sense, cost-effective ways to regain our societal sanity.”—Allen Frances, MD, Professor & Chair Emeritus, Duke Department of Psychiatry, Chair DSM-IV Task Force, and Author of Saving Normal

“This utterly absorbing book fixes our attention on what we can do to enable people with serious mental illness to have what we all want: namely a life of relationships, work, contribution and dignity.”—Lloyd I Sederer, MD, (Former) Executive Deputy Commissioner for Mental Hygiene Services in New York City

“Rosenberg has given us the most compelling and important look into what has gone wrong and why, with some ideas on what can make it better. Bedlam is a must read for anyone who cares about humanity, justice and fairness.”—Norman Ornstein, Resident Scholar, American Enterprise Institute and Vice President, Matthew Harris Ornstein Memorial Foundation

“Bedlam is a masterful, moving wake-up call for all of us. It is a must read that illuminates and offers practical solutions. It has my highest recommendation.”—Xavier F. Amador, PhD, author of I’m Not Sick, I Don t Need Help!

About the Author

Kenneth Paul Rosenberg, MD is a distinguished fellow of the American Psychiatric Association with a private practice in Manhattan, and clinical associate professor of psychiatry at the New York-Presbyterian / Weill Cornell Medical Center. Dr. Rosenberg is also a Peabody Award-winning filmmaker.

Excerpt. © Reprinted by permission. All rights reserved.

Chapter 1

How It All Began

It had been two weeks since I'd spoken to Merle, and I was afraid. For months, I'd been calling my sister every few days, cajoling, threatening, using every carrot and stick I could to convince her to move to a facility that could care for her and where she might make friends for the first time in decades. Finally, she'd stopped answering the phone. Now fifty-five years old, she had been living on her own for the first time since my mother had died two years earlier.

On December 27, 2005, after fourteen days of silence, I rode the Metro North train home from work in my Manhattan office, focused on the task ahead. As an addiction psychiatrist, I had spent the day treating people with depression, anxiety, and drug and alcohol problems. Over the years, I had received many notes of thanks from patients for saving their lives from their various addictions. But it had been years since I treated someone for schizophrenia.

I lived a comfortable life, commuting between my Upper East Side office and a bedroom community in Scarsdale. The loving and stable home I'd created with my wife and our two children offered a complete departure from my chaotic childhood in Philadelphia. Now the chaos was creeping back in. Despite all my psychiatric training and practice, I was at a loss for what to do about my sister. As the only other surviving member of our family, I was the last person left to care for her. Cancer had taken my father first, and later my eldest sister, Gail. Finally, my mother's passing left me in charge.

I had been determined to find a reasonable plan for Merle's well-being and had made arrangements with a convalescent home that could offer her a life free from the years of hoarding that had turned the house where we grew up into a hovel. But the longer my calls went unanswered, the clearer it became that I would have to betray my mother's dying wish that I never, ever call the police on my sister.

I walked the mile from the train station to my home and dialed Merle yet again, picturing the beige telephone that sat on the island separating the kitchen from the living room, where as a child, I'd often watched TV while we ate dinner. I pictured the black phone that sat on the night table next to my parents' bed-the big bed, the comfortable bed, the bed on which I'd jumped and played, the only bed near a TV, in the room with a bright view of the street-the room where Merle had recovered after her accident, the room where we'd had one of our worst fights, the room where she now slept.

I knew that even if I could get the police to take Merle to a hospital, it would be nearly impossible to keep her there for long. I was well acquainted with the commitment laws, which dictate that you can't involuntarily hospitalize someone unless they declare themselves to be immediately suicidal or homicidal to an impartial evaluating psychiatrist. One of the few exceptions in some states is when a doctor swears that a patient is so incapacitated that they can't feed themselves-not even at a shelter or by scavenging through garbage cans the way the estimated 194,000 unsheltered homeless and the 552,000 total homeless people do every day in America. Otherwise, it's illegal to admit someone to a locked facility for more than a few days of observation. I had heard there were ways to petition the court so that a relative could assume control, but that would require supportive paperwork, a court hearing, and a judge's determination. Pursuing that course was certain to incur Merle's wrath, but I was running out of options.

It was not unusual for Merle to avoid me. In the two years since my mother's death, I had often called the emergency operator, who would report that the phone was off the hook. "Call the police?" they would suggest. No police, I thought. My sister would call me when she was ready. But this time was different; the phone was on the receiver.

In a last-ditch effort to avoid the unavoidable, I reached out to Gail's widower, my brother-in-law Bob, who lived nearby, to ask him to knock on the door. No answer. Mail was piled on the doorstep. It was time to make the call.

¥¥¥

As Gail told it, Merle was an irascible child. Gail was six years old when Merle was born and recalled my parents struggling to manage the baby, trying in vain to get her to lie down in her crib. I was born six years later, and for as long as I can remember, Merle was prone to erupting at any moment, lashing out at my mother or at Gail, if she happened to be home (once she moved out to attend Temple University in downtown Philly, that wasn't often). I had always been in awe of Gail-my cool, blond sister who had breezed in and out of our house between boyfriends and adventures-but we didn't really connect until years later, as Merle's condition declined and we joined forces against our parents' denial.

Over the years, arguments between Merle and my mother grew louder and became physical. As a small child, I would scream at the top of my lungs, briefly producing a cease-fire. That strategy worked, until it didn't. Then only my dad could make them stop. When Merle's rage escalated, my mother would telephone my father over and over, summoning him home from work, pleading for help. Sometimes she would pull me to the phone to corroborate that Merle was "impossible" and he had to come. My father was a tough guy from South Philly, never one to back down from a fight. Merle taunted him to no end.

When Merle's teenage fury morphed into adult psychosis, her illness became our family's Watergate, a scandal to cover up at any cost. To my working-class Jewish parents, any mental illness was a shanda, Yiddish for "disgrace." They had come of age before the discovery of the new antipsychotic drugs in 1950, and their expectations were likely colored by what they had heard about the so-called snake-pit hospitals of their generation, a reputation dating back to the very first lunatic asylum, Bedlam.

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A word now synonymous with disorder and mayhem, Bedlam was the colloquial name of England's Bethlem Hospital, which was founded as a priory in 1247 and has cared for "lunatics" from 1377 to the present day. In A Foreign View of England (1902), CŽsar de Saussure described conditions at the hospital like this:

You find yourself in a long and wide gallery, on either side of which are a large number of little cells where lunatics of every description are shut up, and you can get a sight of these poor creatures, little windows being let into the doors. Many inoffensive madmen walk in the big gallery. On the second floor is a corridor and cells like those on the first floor, and this is the part reserved for dangerous maniacs, most of them being chained and terrible to behold.

Bethlem, the nearby village, had been a quiet backwater until the 1630s, when it became a bustling center. Close as it was to "the first Elizabethan theaters and other sources of entertainment," Bedlam, the hospital, evolved into a sightseeing destination where the public was welcome to ogle the patients-for a fee. In the seventeenth and eighteenth centuries, explain the authors of The History of Bethlem, "casual visitors contributed quite substantial sums to the income of the Hospital and its staff."

According to Roy Porter, a historian whom I've admired since med school and author of Mind-Forg'd Manacles: A History of Madness in England from the Restoration to the Regency, this open-door policy may have fed the hospital's ill repute:

Spectators thronged to see unaccommodated man. And largely because Bethlem housed the only collection of mad-people in the nation, it achieved a sort of concentrated notoriety; it became an epitome of all that people fantasized about madness itself. All this conspired to give Bethlem its lasting dubious reputation. At best conveying gloomy horoscope, it symbolized the revenue of natural man-Chaos come again.

What "most discredits Bethlem," according to Porter, was "its lasting practical therapeutic apathy" whereby those charged with patient care advanced neither research about insanity nor its treatment. Indeed, not until the seventeenth century did the hospital even retain medical professionals, and once it did, the "curative" approaches reflected the misinformation and barbarism of the age.

Here in the United States, the treatment approaches were not much better. In colonial times, madness was considered symptomatic of a spiritual or moral failing and was thought to stem from both natural and supernatural causes, including demonic possession. These illnesses were cause for scorn, punishment, or both. If they didn't end up in almshouses or jails, most people with mental diseases were cared for by family members. The few treatments available included bloodletting and purging (aka evacuating the bowels of) those afflicted.

The first "organized effort to care for the mentally ill" in America, according to the U.S. National Library of Medicine, was made by Philadelphia Quakers in 1752 when they set up a cluster of basement rooms equipped with shackles that could accommodate a small number of patients in Pennsylvania Hospital. Within two years, in response to increased demand, they expanded to a freestanding ward next door. The facility, which moved to a new location and changed its name, was among America's first mental institutions, setting the stage for a new phase in treatment: institutional care.

Although the nineteenth century brought about few advancements in the scientific understanding of psychiatric disorders, profound changes in public perception shaped different priorities for care. Spearheading this transformation was Dorothea Dix, who, from 1843 on, campaigned on behalf of the "helpless, forgotten, insane, and idiotic men and women; of beings, sunk to a condition from which the most unconcerned would start with real horror." Perhaps the best-known early advocate for "moral treatment," Dix argued that instead of locking people away in almshouses or jails, small, "rightly organized Hospitals, adapted to the special care of the peculiar malady of the Insane," could "re-educate" ill individuals. Offering occupational therapy, religious exercises, amusements, and games could promote healing. Dix petitioned state legislatures, on moral grounds, to commit funds toward institutions that would offer attentive, individualized care. This led virtually every state to establish one or more public hospitals, launching a century-long practice of state responsibility for the care and treatment of people with mental illness.

In keeping with the values of the times, some private mental hospitals adopted programs of exercise and recreation that included concerts and dances called "lunatic balls." (In the late nineteenth century, a state hospital in Middletown, New York, even established a men's baseball team, with each player wearing a uniform emblazoned with the name "Asylum." In 1856, Pennsylvania Hospital founded the independent Pennsylvania Hospital for the Insane, which promoted "moral treatment" rooted in the belief that mental illness could be cured by respectful care in a wholesome environment.

In contrast to the earlier warehouses that locked patients in filthy, crowded wards, often in chains, it set a new standard of care with spacious, airy quarters where residents had private rooms and spent time outdoors, attended lectures, and visited the hospital library. Pennsylvania Hospital was also where my sister received care after she suffered her first psychotic break at age twenty, and it provided me with my first glimpse of psychiatric treatment.

¥¥¥

Merle had a quick and creative mind and laughed at the silliest of jokes. With her wide smile, my sister was, it seemed to me, as personable and funny as our favorite television star, Carol Burnett. Sometimes she would entertain me by performing one-woman comedy skits fashioned after Burnett's show in the doorway of my bedroom. Merle always belted out a song as her grand finale. My favorite was her rendition of "Sonny" and, like a fan at a concert, I'd call out for it and she'd oblige. "More, More!," I called out as Merle took a bow. If I were lucky, she might tell a one-liner or sing another tune. I was Merle's adoring audience.

To me, Merle was also as pretty as could be. But she always worried that boys weren't interested in her. At age nineteen, she met her first boyfriend, another freshman at a small college nearby in New Jersey. A year later, they were married. The wedding was a rushed affair, held on the heels of Gail's wedding-the following year, at the same synagogue, with the same caterer.

Marriage seemed to offer progress toward the future she dreamed of: becoming a wife, a mother, and a schoolteacher. But within a year, their newlywed arguments grew hostile and Merle and her husband split up. Their marriage was annulled, and with that my sister's first, and only, romantic relationship was erased as if it had never happened.

Merle returned home bereft, hysterical. It's impossible to say whether the breakup was precipitated by early symptoms of mental illness or if her grief triggered a rapid decline. There's a dynamic flux between factors-that is, mental illness doesn't just happen in a vacuum. There's a progression of illness, exacerbated by life's stresses, during which the smoldering brain erupts into an all-out, five-alarm fire.

My sister's challenges with relationships and her generalized anxieties were signs that a bigger problem might be looming. Psychological treatment and judicious use of medications for at-risk behaviors might have prevented worse problems down the road. But that's not what happened. Hoping to make a fresh start, Merle went off to a different college. By the end of the fall semester in her second year, she was failing out of school. She was entering what I now know to be the prodromal phase of psychosis, which included magical thinking, poor judgment, bad anxiety, mood shifts, self-imposed isolation, and strange behavior that was inconsistent with her earlier life. Psychiatrists will tell you that minimizing stress and avoiding substances of abuse, which is particularly challenging for many college students, is essential during this prodrome period. But it was hard for Merle-and us-to reduce stress while everyone was busy minimizing the disaster that was brewing. The following year, it became unavoidable.

I was fourteen when my sister transformed into someone unrecognizable. Once, a new college friend telephoned to say that he was worried that she was out of touch with reality. My parents dismissed him as a jilted lover, but Gail knew better-even before Merle's condition deteriorated to the worst we'd ever seen.

Months later, Merle was visiting Gail at her downtown apartment. The two stayed up talking long after Gail's husband, Bob, who had to get up early for work, went to bed. At around two in the morning, Gail shook him awake in a panic. "Get up," Gail urged. "You gotta come out here and listen to this." Merle was hallucinating and paranoid. She didn't recognize them. Bob and Gail did their best to calm her down and everyone went to sleep. But by morning, Merle had disappeared.

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Bedlam: An Intimate Journey Into America's Mental Health Crisis