The Great Pretender
Page 1
Copyright
Copyright © 2019 by Susannah Cahalan, LLC
Cover by Phil Pascuzzo. Cover photographs by Getty Images; photograph of Dr. David Rosenhan by Duane Howell/Getty Images. Cover copyright © 2019 by Hachette Book Group, Inc.
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Library of Congress Cataloging-in-Publication Data
Names: Cahalan, Susannah, author.
Title: The great pretender : the undercover mission that changed our understanding of madness / Susannah Cahalan.
Description: First edition. | New York : Grand Central Publishing, 2019. | Includes bibliographical references.
Identifiers: LCCN 2019017569| ISBN 9781538715284 (hardcover) | ISBN 9781549175299 (audio download) | ISBN 9781549175282 (audio book) | ISBN 9781538715260 (ebook)
Subjects: | MESH: Rosenhan, David L. | Mental Disorders—diagnosis | Mental Disorders—drug therapy | Mental Health Services | Attitude of Health Personnel | Research Design | Psychiatry | United States
Classification: LCC RC454.4 | NLM WM 141 | DDC 616.89—dc23
LC record available at https://lccn.loc.gov/2019017569
ISBNs: 978-1-5387-1528-4 (hardcover), 978-1-5387-1526-0 (ebook)
E3-20190912-JV-NF-ORI
CONTENTS
Cover
Title Page
Copyright
Dedication
Epigraph
Preface
PART ONE
1 Mirror Image
2 Nellie Bly
3 The Seat of Madness
4 On Being Sane in Insane Places
5 A Riddle Wrapped in a Mystery Inside an Enigma
PART TWO
6 The Essence of David
7 “Go Slowly, and Perhaps Not at All”
8 “I Might Not Be Unmasked”
9 Committed
10 Nine Days Inside a Madhouse
PART THREE
11 Getting In
12 … And Only the Insane Knew Who Was Sane
13 W. Underwood
14 Crazy Eights
15 Ward 11
16 Soul on Ice
17 Rosemary Kennedy
PART FOUR
18 The Truth Seeker
19 “All Other Questions Follow from That”
20 Criterionating
21 The SCID
PART FIVE
22 The Footnote
23 “It’s All in Your Mind”
24 Shadow Mental Health Care System
25 The Hammer
26 An Epidemic
27 Moons of Jupiter
Epilogue
Acknowledgments
Discover More
About the Author
Also by Susannah Cahalan
Reading Group Guide
Permissions
Notes
For the ones who need to believe
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“You’d have to be crazy to get yourself committed to a mental hospital.”
—The Shock Corridor, 1963
PREFACE
The story that follows is true. It is also not true.
This is patient #5213’s first hospitalization. His name is David Lurie. He is a thirty-nine-year-old advertising copywriter, married with two children, and he hears voices.
The psychiatrist opens the intake interview with some orienting questions: What is your name? Where are you? What is the date? Who is the president?
He answers all four questions correctly: David Lurie, Haverford State Hospital, February 6, 1969, Richard Nixon.
Then the psychiatrist asks about the voices.
The patient tells him that they say, “It’s empty. Nothing inside. It’s hollow. It makes an empty noise.”
“Do you recognize the voices?” the psychiatrist asks.
“No.”
“Are they male or female voices?”
“They are always male.”
“And do you hear them now?”
“No.”
“Do you think they are real?”
“No, I’m sure they’re not. But I can’t stop them.”
The discussion moves on to life beyond the voices. The doctor and patient speak about Lurie’s latent feelings of paranoia, of dissatisfaction, of feeling somehow less than his peers. They discuss his childhood as a son of two devout Orthodox Jews and his once intense relationship with his mother that had cooled over time; they speak about his marital issues and his struggle to temper rages that are sometimes directed at his children. The interview continues on in this manner for thirty minutes, at which time the psychiatrist has gathered nearly two pages of notes.
The psychiatrist admits him with the diagnosis of schizophrenia, schizoaffective type.
But there’s a problem. David Lurie doesn’t hear voices. He’s not an advertising copywriter, and his last name isn’t Lurie. In fact, David Lurie doesn’t exist.
The woman’s name doesn’t matter. Just picture anyone you know and love. She’s in her mid-twenties when her world begins to crumble. She can’t concentrate at work, stops sleeping, grows uneasy in crowds, and then retreats to her apartment, where she sees and hears things that aren’t there—disembodied voices that make her paranoid, frightened, and angry. She paces around her apartment until she feels as if she might burst open. So she leaves her house and wanders around the crowded city streets trying to avoid the burning stares of the passersby.
Her family’s worry grows. They take her in but she runs away from them, convinced they are part of some elaborate conspiracy to destroy her. They take her to a hospital, where she grows increasingly disconnected from reality. She is restrained and sedated by the weary staff. She begins to have “fits”—her arms flailing and her body shaking, leaving the doctors dumbstruck, without answers. They increase her doses of antipsychotic medications. Medical test after medical test reveals nothing. She grows more psychotic and violent. Days turn into weeks. Then she deflates like a pricked balloon, suddenly flattened. She loses her ability to read, to write, and eventually she stops talking, spending hours blankly staring at a television screen. Sometimes she grows agitated and her legs dance in crooked spasms. The hospital decides that it can no longer handle her, marking her medical records with the words TRANSFER TO PSYCH.
The doctor writes in her chart. Diagnosis: schizophrenia.
The woman, unlike David Lurie, does exist. I’ve seen her in the eyes of an eight-year-old boy, an eighty-six-year-old woman, and a teenager. She also exists inside of me, in the da
rkest corners of my psyche, as a mirror image of what so easily could have happened to me at age twenty-four, had I not been spared the final move to the psychiatric ward by the ingenuity and lucky guess of a thoughtful, creative doctor who pinpointed a physical symptom—inflammation in my brain—and rescued me from misdiagnosis. Were it not for that twist of fortune, I would likely be lost inside our broken mental health system or, worse, a casualty of it—all on account of a treatable autoimmune disease masquerading as schizophrenia.
The imaginary “David Lurie,” I would learn, was the original “pseudopatient,” the first of eight sane, healthy men and women who, almost fifty years ago, voluntarily committed themselves to psychiatric institutions to test firsthand if doctors and staff could distinguish sanity from insanity. They were part of a famously groundbreaking scientific study that, in 1973, would upend the field of psychiatry and fundamentally change the national conversation around mental health. That study, published as “On Being Sane in Insane Places,” drastically reshaped psychiatry, and in doing so sparked a debate about not only the proper treatment of the mentally ill but also how we define and deploy the loaded term mental illness.
For very different reasons, and in very different ways, “David Lurie” and I held parallel roles. We were ambassadors between the world of the sane and the world of the mentally ill, a bridge to help others understand the divide: what was real, and what was not.
Or so I thought.
In the words of medical historian Edward Shorter, “The history of psychiatry is a minefield.” Reader: Beware of shrapnel.
PART ONE
Much Madness is divinest Sense
To a discerning Eye
Much Sense—the starkest Madness
’Tis the Majority
In this, as all, prevail
Assent—and you are sane
Demur—you’re straightway dangerous
And handled with a Chain
—Emily Dickinson
1
MIRROR IMAGE
Psychiatry, as a distinct branch of medicine, has come far in its short life span. The field has rejected the shameful practices of the recent past—the lobotomies, forced sterilizations, human warehousing. Today’s psychiatrists boast a varied arsenal of effective drugs and have largely dropped the unscientific trappings of psychoanalytic psychobabble, the “schizophrenogenic” or “refrigerator” mothers of yesteryear who had been blamed for triggering insanity in their offspring. Two decades into the twenty-first century, psychiatry now recognizes that serious mental illnesses are legitimate brain disorders.
Despite all these advancements, however, the field lags behind the rest of medicine. Most of our major innovations—better drugs, improved therapies—were in play around the time we first walked on the moon. Though the American Psychiatric Association reassures us that psychiatrists are uniquely qualified to “assess both the mental and physical aspects of psychological problems,” they are, like all of medicine, limited by the tools at hand. There are not, as of this writing, any consistent objective measures that can render a definitive psychiatric diagnosis—no blood tests to diagnose depression or brain scans to confirm schizophrenia. Psychiatrists instead rely on observed symptoms combined with patient histories and interviews with family and friends to make a diagnosis. Their organ of study is the “mind,” the seat of personality, identity, and selfhood, so it should not be surprising that the study of it is more impenetrable than understanding, say, the biology of skin cancer or the mechanics of heart disease.
“Psychiatry has a tough job. In order to get the answers we need, the truth about what’s really going on, we need to understand our most complex organ, the brain,” said psychiatrist Dr. Michael Meade. “To understand how this physical organ gives rise to the phenomenon of consciousness, of emotion, of motivation, all the complex functions we humans see as possibly distinguishing us from other animals.”
Diseases like the one that set my brain “on fire” in 2009 are called the great pretenders because they bridge medical worlds: Their symptoms mimic the behaviors of psychiatric illnesses like schizophrenia or bipolar disorder, but these symptoms have known physical causes, such as autoimmune reactions, infections, or some other detectable dysfunction in the body. Doctors use terms like organic and somatic to describe diseases like mine, whereas psychiatric illnesses are considered inorganic, psychological, or functional. The whole system is based on this distinction, on categorizing illness as one or the other, and it dictates how we treat patients up and down the scale.
So what is mental illness? The question of how to separate sanity from insanity, of how to even define mental illness, rises above semantics, and above deciding what kind of specialist will care for you or your loved one during a time of intense need. The ability to accurately answer this question shapes everything—from how we medicate, treat, insure, and hospitalize to how we police and whom we choose to imprison. When doctors diagnosed me with an organic illness (as in physical, in the body, real) as opposed to a psychiatric one (in the mind, and therefore somehow less real), it meant that I’d receive lifesaving treatment instead of being cordoned off from the rest of medicine. This separation would have delayed or even derailed my medical team’s efforts to solve the mystery in my brain and would have likely led to my disablement or death. The stakes couldn’t be higher, yet, as psychiatrist Anthony David told me, “the lay public would be horrified to realize how flawed and arbitrary a lot of medical diagnosis is.”
Indeed, this “flawed and arbitrary” diagnostic system has life-altering ramifications for the one in five adults living in the United States who will experience symptoms of mental illness this year. It even more urgently affects the 4 percent of Americans who contend with serious mental illness,1 a segment of the population whose lives are often shortened by ten to twenty years. Despite all of our medical progress—of which I’m a direct recipient—the sickest among us are getting sicker.
Even if you are one of the lucky few who have never questioned the firing of their synapses, this limitation touches you, too. It shapes how you label your suffering, how you square your eccentricities against the group, how you understand your very self. Psychiatrists, after all, were first known as alienists—a choice term that conveys a sense not only of the doctors’ outsider status from the rest of medicine and patients’ alienation from themselves, but also of being the other. “Insanity haunts the human imagination. It fascinates and frightens all at once. Few are immune to its terrors,” wrote sociologist Andrew Scull in his book Madness in Civilization. “It challenges our sense of the very limits of what it is to be human.” It’s undeniable: There is something profoundly upsetting about a person who does not share our reality, even though science shows us that the mental maps we each create of our own worlds are wholly unique. Our brains interpret our surroundings in highly specific ways—your blue may not be my blue. Yet what we fear is the unpredictability of a mentally ill “other.” This fear emerges from the sneaking realization that, no matter how sane, healthy, or normal we may believe we are, our reality could be distorted, too.
Before I turned twenty-four, all I’d really known of madness was from reading a stolen copy of Go Ask Alice in elementary school, or hearing about my stepfather’s brother who was diagnosed with schizophrenia, or averting my eyes as I passed a homeless person pawing at imaginary enemies. The closest I got to looking it in the eyes was when, as a tabloid reporter, I’d interviewed in prison a notorious sociopath, whose sharp wit made for great copy. Mental illness was cinematic: the genius mathematician John Nash, played by Russell Crowe in A Beautiful Mind, drawing equations on chalkboards, or a sexy borderline à la Angelina Jolie in Girl, Interrupted. It seemed almost aspirational, some kind of tortured but sophisticated private club.
And then my illness struck, the autoimmune encephalitis that would devastate me, briefly robbing me of my sanity and changing my life. Sharp fragments of that time stay with me a decade later, slivers from my own memories, my famil
y’s stories, or my medical records: the early depression and flu-like symptoms, the psychosis, the inability to walk or talk, the spinal taps, the brain surgery. I remember vividly the imaginary bedbugs, which I believed had taken my apartment hostage; falling apart in the New York Post newsroom; nearly jumping out the window of my father’s third-floor apartment; the nurses I was convinced were really undercover reporters come to spy on me; the floating eyes that terrified me in the bathroom; the belief that I could age people with my mind. I remember, too, the smug, dispassionate psychiatrist who had treated me in the hospital, calling me an “interesting case” and dosing me with what we would later learn were unnecessary amounts of antipsychotic medications. This was around the time that the medical team began to give up on my case, and the words TRANSFER TO PSYCH started to creep into my medical records.
My family, like many families before them, fought against the tyranny of the mental illness label. My parents were resolute: I was acting crazy, sure, but I was not crazy. There was a difference. I may have seemed violent, paranoid, and delusional, but I was sick. It wasn’t me. Something had descended upon me in the same way that the flu or cancer or bad luck does. But when the doctors couldn’t immediately find a physical cause, nothing concrete to pinpoint and treat like an infection or tumor, their lens shifted. They moved to a possible diagnosis of bipolar disorder, and then to schizoaffective disorder as my psychosis intensified. Given my symptoms, the psychiatrists’ diagnoses made sense. I was hallucinating; I was psychotic; I experienced a cognitive decline. No other tests could explain the sudden change. They saw a bipolar patient. They saw a schizoaffective person. They were wrong. But in nearly any other case, they would have been “right.”
Psychiatry is not the lone discipline to wander in such diagnostic haziness. The odds are high that in your lifetime, you will one day suffer from a disease whose causes and treatments are still unknown, or you will face a meaningful medical error that could delay proper treatment, hurt you, or contribute to the cause of your death. The list of illnesses without known cause and cure is long—from Alzheimer’s disease to cardiac syndrome X to sudden infant death syndrome. It has been estimated that a third of people who see their general practitioners will suffer from symptoms that have no known cause or are deemed “medically unexplained.” We don’t really know how everyday drugs like Tylenol work, nor do we really know what exactly happens in the brain during anesthesia, even though 250 million people go under every year.