by Ron Powers
Copyright
Copyright © 2017 by Ron Powers
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Library of Congress Cataloging-in-Publication Data
Names: Powers, Ron, author.
Title: No one cares about crazy people : the chaos and heartbreak of mental health in America / Ron Powers.
Description: New York : Hachette Books, [2017] | Includes bibliographical references and index.
Identifiers: LCCN 2016046019| ISBN 9780316341172 (hardback) | ISBN 9781478940906 (audio download) | ISBN 9780316341103 (ebook)
Subjects: | MESH: Schizophrenia—history | Mental Health Services—history | Mental Health Services—legislation & jurisprudence | Mentally Ill Persons | United States | Personal Narratives
Classification: LCC RC514 | NLM WM 203 | DDC 362.2/6—dc23 LC record available at https://lccn.loc.gov/2016046019
ISBNs: 978-0-316-34117-2 (hardcover), 978-0-316-34110-3 (ebook)
E3-20170315-JV-PC
Contents
Cover
Title Page
Copyright
Dedication
Epigraph
Preface
1. Membrane
2. What Is Schizophrenia?
3. Regulars
4. Bedlam, Before and Beyond
5. Eugenics: Weeding Out the Mad
6. “A More Normal World”
7. “When They Were Young”
8. Madness and Genius
9. “If Only, If Only, If Only…”
10. Chaos and Heartbreak
11. The Great Unraveler
12. Surcease
13. Debacle
14. “Hey Fam—”
15. Antipsychotics
16. “Something Unexplainable”
17. “We Have Done Pitifully Little About Mental Illnesses”
18. “Primoshadino”
19. Red Sox 17, Yankees 1
20. Insanity and Icarus
21. Someone Cares About Crazy People
Epilogue
Acknowledgments
About the Author
Notes
Newsletters
In Kevin’s Memory
For Dean
For Honoree
For all those struggling with chronic mental illness
For all those who are dedicated to healing its victims
For all those who are dedicated to finding a cure
I have come to present the strong claims of suffering humanity. I come to place before the Legislature of Massachusetts the condition of the miserable, the desolate, the outcast. I come as the advocate of the helpless, forgotten, insane men and women… confined in cages, closets, cellars, stalls, pens! Chained, naked, beaten with rods, and lashed into obedience… I beg, I implore you [to] put away the spirit of selfishness and self-seeking. Lay off the armor of local strife and political ambition. Forget, I beg you, the earthly and perishable, the thought without mercy… Gentlemen, I commit you to a sacred cause!
—Dorothea Dix to the Massachusetts state legislature, December 18431
No one cares about crazy people.
—Kelly M. Rindfleisch, deputy chief of staff to then Milwaukee County executive Scott Walker, September 1, 2010
Preface
This is the book I promised myself I would never write. And promised my wife as well. I have kept that promise for a decade—since our younger son, Kevin, hanged himself in our basement, a week before his twenty-first birthday in July 2005, after struggling for three years with schizophrenia. The promise was easy to keep in the first five years after Kevin’s death, if only because I could not bring myself to think about such a project and the revisiting that it would make necessary. I wasn’t able to think about much of anything at all, except that I dreaded each new season of “greening up,” as it is called here in Vermont. (“It’s a tragically beautiful summer,” my wife, Honoree, managed to observe not long after that terrible July had passed.)
Over the second five years, the infernal process of “healing”—adaptation, really—had begun its unwelcome sterilizing work. And then the malady struck our family again. Symptoms of schizophrenia surfaced in our elder and surviving son, Dean. My wife and I witnessed the psychotic break on a Christmas morning that sent him knocking on doors through the neighborhood, announcing that he was the Messiah, until a police officer restrained him and took him to a nearby medical center.
Dean stubbornly surmounted the disease’s worst effects and is functioning well as of this writing. Still, this second of two unthinkable blows to our family added to a list of reasons why I felt that I should really just leave the subject alone.
At the top of the list was privacy. My sons, even as robust and outgoing children, shared a powerful ethic of discretion, which they inherited from their mother. None of these three was what you would call a hearts-on-sleeves person. It wasn’t a matter of secretiveness. Some things were just nobody else’s business, that was all. When Kevin, our younger son, was away with his guitar at a music academy in Michigan, he emailed us a photograph of himself and his date for the spring dance. Kevin was wearing a white dinner jacket, his first. I was moved to use the photo as the basis of a commentary I wrote for the Vermont public radio station:
The image of a white dinner jacket, especially one worn by a 15-year-old son nine hundred miles from home on a spring night at the prom with a very young woman on his arm—this image takes on a new and unexpected luster: a sweetness and fragility so unbearable that you lie there in your bed wishing the damned alarm would go off and restore you to the necessary cynicism of daylight.
One of Kevin’s buddies back in Middlebury, where we lived, heard the commentary and ratted me out. Kevin let me know that he was wise to what I’d done, in terms that you would have thought were being used against somebody who’d stolen his black Martin electric.
So privacy was my top consideration, and I suppose it should have sufficed. But there were other reasons, strong ones.
The moral blemish of exploitation, for example. Even when “exploitation” is not the intended motive in a book such as this, it can seem the unintended consequence. My sons were and remain sacred to me. They are not for sale.
And, really, end of the day, who the hell wants to read about schizophrenia anyway?
Not me.
And that was the way things stood for the second five years. That is the way I thought things would stand for the duration. I was just not interested.
But to paraphrase
Tolstoy: “You may not be interested in schizophrenia, but schizophrenia is interested in you.” It turns out, schizophrenia was particularly interested in the Powers family, and no amount of disinterest on my part was going to change that. So I began, tentatively, to explore the malady.
Schizophrenia is a chronic and incurable disease of the brain. It is rooted (or so neuroscientists presently believe; nothing about it is yet a matter of settled truth) partly in genetic mutation and partly in external, or “environmental,” experiences. It is the most dreaded of all the human mental illnesses, afflicting slightly more than one in one hundred people. Its name—a bit misleading, as we shall see—is a vernacular near synonym for its closely allied affliction, schizo-affective disorder. The latter disease is rarer, striking about 0.3 percent of the population; but worse: it incorporates severe mood swings as well as the loss of touch with reality wrought by schizophrenia. Some specialists believe there is no hard distinction between the two maladies.
Schizophrenia is a scourge, but it’s only one of the many mental illnesses that sprawl across many categories, lengths of duration, and degrees of severity. The World Health Organization estimates that one-fourth of the globe’s people will experience some kind of mental illness in their lifetimes. Two-thirds of these either do not recognize that they are ill or simply refuse treatment. Studies by the National Institute of Mental Health show that among Americans age eighteen or older, more than sixty-two million (26 percent of the population) require (but are not always given) counseling and medical treatment.
But even among the many devastating diagnoses of mental illness, schizophrenia stands unique in its capacity to wreck the rational processes of the mind. It is to mental health as cancer is to physical health: a predator without peer and impervious to cure.
My final resolve to refrain from writing this book came unraveled on the night of January 30, 2014.
In the late afternoon of that day, Honoree and I drove northward from our home in Castleton to the Vermont state capitol in Montpelier. We’d been invited to testify at a public hearing convened by the Senate Committee on Health and Welfare. The hearing was called to air out arguments on either side of a bitter, seemingly intractable clash of ideologies: whether or not mentally ill patients should be detained against their will (an “involuntary” intervention) in times of acute need and sickness, especially given the delays in treatment caused by the shortages of hospital beds and treatment facilities. It sounds benign in the abstract, but in practice an “intervention” generally means retaining such a person in the emergency room until a psychiatric bed becomes available, and medicating the patient with psychotropic drugs. Neurological research supports the view that early intervention is necessary to prevent the psychosis from deepening—but when that intervention is involuntary, a whole new array of issues (both legal and ethical) arises.
In Vermont as in some other states, “involuntary” patients can be placed in emergency rooms but cannot receive medication for their affliction without a court order authorizing a doctor to proceed. Some Vermont patients have waited in their psychoses as long as two or even three months for the case to work its way through the courts.
At first glance, speedy “involuntary treatment” might seem the least objectionable of measures, given that people in psychosis are virtually never capable of making rational decisions. And yet opponents of the process, whose ranks are reinforced by schizophrenia victims, bring passionate counterarguments to the debate. Among the most formidable is that “involuntary treatment” is by definition a violation of one’s civil liberties.
Another motivation for opponents of involuntary care lies in their distrust of the medications themselves. It is undeniable that as they have evolved since the 1950s, antipsychotic drugs, experimental by their very nature, have at times further damaged patients rather than stabilized them; that even the effective ones can produce damaging side effects; and that widely despised “Big Pharma,” the multibillion-dollar pharmaceutical industry, has made it lucrative for doctors and psychiatrists to prescribe medications as a preemptive cure-all for mental illness at the expense of scrupulous individual care and regardless of how well or ill the patient, or even whether the meds work.
The hearing at Montpelier that cold winter night in 2014 showcased both sides of this disagreement. Honoree and I testified in alliance with those advocating for shorter waits for “involuntary treatment.” Like many families visited by schizophrenia, we did not base our position in ideology. We thought about, understood, and respected the motivating principles on both sides.
The state legislature debated the bill through the spring, and in June the governor signed a version of it, containing several compromises, into law.
My purpose in bringing up this hearing and legislation is not to reargue its merits or demerits. My purpose is to describe the awakening the event triggered in me.
I discussed my reactions with Honoree as we walked out of the chamber and the capitol building to our car, and I discovered that hers were similar.
I had found myself moved—riveted—by the people who spoke against involuntary treatment. They sat in an uncomfortable line at the long polished desk in the committee chamber, clearing their throats and stealing glances at the suited and scarved and coiffed legislative committee members. They had come dressed in the Vermont uniform of workaday jeans and flannel shirts and denim skirts, many of the women with their hair uncombed and men with their beards untrimmed. Their voices sometimes quavered and their handwritten notes trembled in their grip. Yet they were there: the faces and souls of the mentally ill, emerging from their prevailing invisibility to declare themselves.
The sheer presence of them, their actualization in the room, had affected me in the gut, not because I hadn’t expected them, but because of the profound, elemental humanity of them. Full realization dawned on me only later: Like so many people, I had converted the mentally ill into abstractions. I had stopped seeing them. I’d looked away reflexively when I did see them. I had stopped thinking about them. I had stopped acknowledging their chimerical presence at the corners of my tight little sphere of “reality.”
How thunderously ironic.
I, who had witnessed mental illness in as intimate and convincing a form as is possible to witness it; I, who had wept, sat unmoving, endured years of dreams—including the most exquisitely, diabolically “sweet” dreams that an agitated human mind could concoct; a recurring dream of Kevin alive but refusing ever again to play his guitar*—I, of all people, was shocked to behold mentally ill people in corporeal form.
Shame on me.
Just three weeks after that hearing in Montpelier, I was stunned by the disclosure of a ghastly remark in a series of emails made public by subpoena. The emails had been written in 2010, principally by an administrative aide to Scott Walker, then the Milwaukee County executive, who was running for the governorship. The aide’s name was Kelly Rindfleisch. At the time, Milwaukee County Hospital was in the news for allegations of mismanagement of its mental health complex—allegations that included the death of a patient by starvation and sexual assaults on patients by other patients and by staff doctors, at least one of which resulted in a pregnancy. Earlier in the chain—on March 27—Walker, wary of the effect the scandal might have on his campaign, had written, “We need to continue to keep me out of the story as this is a process issue and not a policy matter.”1
Walker’s staff labored through the spring and summer to satisfy his wish. On September 2, Rindfleisch wrote, “Last week was a nightmare. A bad story every day on our looney bin. Doctors having sex with patients, patients getting knocked up. This has been coming for months and I’ve unofficially been dealing with it. So, it’s been crazy (pun intended).”
Later, in an attempt to reassure a colleague on Walker’s staff, Rindfleisch somehow found it in herself to write: “No one cares about crazy people.”2
I began to rethink my determination not to write this book. I realized that my ten years of
silence on the subject, silence that I had justified as insulation against an exercise in self-indulgence, was itself an exercise in self-indulgence. The schizophrenia sufferers in that hearing room had not been asking for pity, or for anyone to “feel the pain” of their victimhood. They were asking for understanding. They were insisting that their humanity, so indelibly on display in the room, be acknowledged. They were demanding that their points of view be heard as legitimate and considered alongside the viewpoints of the general population.
They were determined, it seemed to me, to speak up, and back, to the voices of indifference and denial: the voices of “No one cares about crazy people.”
That claim, of course, is an exaggeration. Not even the person who infamously typed it into an email could have believed it to be literally true. Many people care about the insane, even though their numbers in proportion to the total population are tiny. They include family members; neurosurgeons; consulting and research psychiatrists; psychiatric nurses; the clergy; members of organizations such as the National Alliance on Mental Illness and its ideological opposite, the Citizens Commission on Human Rights; and many thousands of social workers, unpaid hospital and care-center volunteers, and sympathetic law enforcement officers such as the young policeman who gently restrained Dean on that frantic Christmas morning in Castleton.
Good, conscientious, indispensable people, all of them. And woefully outnumbered.
In tackling the layered and complicated topic of mental illness, I am treading a path that has been traveled by hundreds of writers with far better credentials than I have: neuroscientists with expertise in schizophrenia’s evolving nosology; scholars who have retraced its long history and the long history of mankind’s attempts to understand and conquer it or, alternatively, to render it invisible by throwing those afflicted with it into dungeons where atrocities were the norm. (This particular remedy survives—thrives—in our time.)
My aim with this book is not to replace or argue with the existing vast inventory of important books on mental illness. Rather, I hope to reamplify a simple and self-evident and morally insupportable truth:
