Beginning in a few days, I will be posting, on this blog, some audio and, later, video tracks of my late son Kevin in performance. These will showcase his more mature work–if “mature” is the right word to describe a gifted young musician who, in the fog of schizophrenia, took his life a week before his 21st birthday in 2005. I’ve published a few pieces before this, but they feature Kev mostly as an early adolescent, sometimes in duets with his older brother Dean–who also was struck by schizophrenia, but who is stabilized at age 35.
I have mixed feelings about offering up these audios and videos. From a personal standpoint, it is still difficult for my wife Honoree and me to hear Kevin’s music sixteen years after he left us. Until this past weekend, I had not been able to bring myself to look at the videos–recorded mostly at the Interlochen Academy for the Arts, where he spent his prep years–since his death. Last week I finally braced myself, dug the cassettes out of storage, and brought them to a technician in nearby Rutland for transfer to the MP4 format, which enables editing and sending the material to my blog administrator. On Saturday, notified that the transfer was ready for viewing, I returned to the studio. I made myself stand beside the technician and watch the monitor screen as it shifted from blue to footage of the Interlochen jazz ensemble, with a T-shirted Kevin pumping out one of his glorious solos. I held it together. At this writing, Honoree has not viewed the tapes, but she has signaled her determination to do so.
The second reason for my mixed feelings is related to the first. This blog is followed by many parents who have lost children of their own to the awful scourge of schizophrenia. It doesn’t take much imagination to understand that many of these good, bereaved people will experience the pain of recovered memory as they watch. For this, I am genuinely sorry.
Yet my reason for posting these sounds and images of Kevin has nothing to do with indulging my own sorrow, nor of activating anyone else’s. It certainly has nothing to do with promoting Kevin as somehow more deserving of attention than the countless other young victims of brain disorders. Quite the opposite: my goal is to celebrate the tremendous joyful life-force that was Kevin–and, by extension, the equally precious, and unique life-forces within all his brothers and sisters who have been taken or diminished by serious mental illness.
Every parent or other surviving relative of a mental-illness casualty harbors rich memories of a child in the full exuberance of his or her life–a time of hopes and dreams unlimited, until the unthinkable occurred.
Kevin was nothing if not generous and humble–he was “notorious” for giving up his own solo time to fellow musicians who yearned for a little spotlight. He would have held these young people in his big-handed embrace. He would have insisted, correctly, that each one of their lives was as precious and filled with potential as his own. He would have insisted on consecrating his music to all the beautiful young souls who seldom if ever enjoyed the pleasure of a “solo,” yet enriched the earth around them, each in his or her own way.
So, please: if you can, enjoy Kevin’s music in the same celebratory spirit that he played it: the spirit of life, and laughter, and friendship, and of giving up a solo to a friend every now and then.
This is one of my favorite photographs of Dean. I took it during our visit to Italy in 2008, three years after Kevin’s death. Honoree had dreamed of a family visit to Italy for years, and we finally made it–but not in time for our younger son to enjoy the splendors of the country with us. Dean was 27 then, still devastated by the loss of his brother–perhaps more than we realized–but still resilient, even as the “prodromal” phase of his own affliction with schizophrenia was advancing. I made this photo through the window of a cafe beside a harbor on Capri, where Honoree and I were having a light lunch. Dean, who was still capable of joy and discovery, had decided to take his notebook and pen outside, where he positioned himself on the rocks by the water, in the sunshine, and channeled his inspiration into his journal.
Dean was then two years from his own psychotic break, triggered by romantic loss, but really the inevitable result of several years of accumulating stress, including his beloved brother’s suicide. As of today, Dean is still fighting gallantly to regain the equilibrium he maintained on that sunlit vacation. He lives in the warm embrace of our household in Vermont. My account of his saga–described in NO ONE CARES ABOUT CRAZY PEOPLE–is a testament to all the unknown battles being waged by victims of this horrible scourge who still can muster the mental resources, and the deep wells of character, to carry on their daily struggle for a meaningful life.
I admire Dean and his late brother more than anyone I have ever known or known about–including heroes of politics, war, literature, or any other field of endeavor. I know that many thousands of young men and women struggle as ardently as my sons, in anonymity, away from public recognition and perhaps scorned and feared by the strangers who encounter them. My book, besides being a journey of inquiry into the long history of mental illness, is meant to be an affirmation of Dean’s and Kevin and their brave brothers and sisters
I never glanced into the journal entries that Dean created in the exhilaration of that sunlit day on Capri. He didn’t volunteer to show us what he’d written, and Honoree and I respected his boundaries, and did not ask.
But I know that the words Dean set down are irradiated with his loving ardency and eloquence. Maybe someday I will look.
A day or so ago I was rummaging through some old photo files, and up popped Tela.
She was Kevin’s cat: a small, white, delicate creature whom he named after a song by Phish, the Vermont band whom he worshipped. Kevin and Tela had a special bond, but everyone in the family loved her. I could count on her padding into my upstairs study at night when I was reading. She’d jump weightlessly onto my lap, and I would scratch her ears, which she loved.
But Kev was her main man. The two of them were reflections of one another in their gentleness and charm. After Kevin died, we found a home for her. We hear that she is doing very well.
The news started coming out of Ft. Lauderdale around mid-afternoon on Friday, as I was preparing a different blog entirely:
I imagine that all of us who happened to see the first news-breaks instantly pared the possibilities to two: Terrorist shooter. Or psychotic shooter. Those of us who weren’t tied up in actual useful work stopped what we were doing and started clicking around the news sites on the Internet. At least five dead, several more wounded. The shooting occurred in the airport baggage claim area.
The airport baggage claim area?!
The updates trickled in. We learned that the shooter had been “taken into custody.” (A rare outcome: normally—as it were—the shooter “ends the spree by taking his own life,” or else is “brought down by a policeman’s bullet.” These industrialized phrases have become as familiar to us as our own names.) Yet in this case, a twist: not so much “taken into custody” as gone limp on the terminal floor, face down, waiting to be hauled upright and carted away.
Probably not a terrorist, then. Yet we waited for further facts and factoids to appear and be confirmed, as we have been trained to do. As many of have been trained to do. Some of us.
Waited, until we decided it was safe to—what?
On the TV screen behind the computer, the factoids crept in their steady pace: “’He just started shooting people.’” “Suspect clad in Star Wars T-shirt.” “Mass chaos.” The regulation sheriff, his regulation civilized dark necktie knotted in place, stepped to the regulation microphone and spoke of “this cowardly, heinous act.”
Somewhat later we learned that “officials” had identified the “suspect” as “26-year-old Esteban Santiago.” And that 26-year-old Esteban Santiago was a “troubled Army veteran.” He had served a tour in Iraq.
Another update revealed to us that after 26-year-old Esteban Santiago’s flight had landed at Ft. Lauderdale, he had simply withdrawn his weapon, a semiautomatic handgun, from his claimed luggage begun killing and maiming people standing near him. (He had discreetly withdrawn the weapon in the men’s restroom.) We learned—or we were reminded, in the case of those of us who had managed to squeeze it out of our memories for the sake of restful nights—the explanation for the baggage claim area as the site of the shootings: under current aviation security rules, passengers may carry loaded guns in their luggage as long as they declare the fact to “authorities.”
We learned that 26-year-old Esteban Santiago had dutifully made that declaration, so there should have been no problem.
We did not learn that an armed Good Guy With a Gun stepped up to shoot this Bad Guy With a Gun. Perhaps this did not happen.
We learned that in states that boast “open-carry” and “concealed-carry” permission laws, states such as Florida, people may enter “unsecured” sections of airports with their open or concealed “carries,” fully equipped to draw and shoot.
At about the same time, we learned—this time from a “senior law enforcement official” quoted in the New York Times—that 26-year-old Esteban Santiago had entered an FBI office in Anchorage, Alaska several weeks ago and made “disturbing remarks” that prompted “officials” to “urge him to seek mental health care. One “official” disclosed that “Mr. Santiago, appearing ‘agitated and incoherent,’ said “that his mind was being controlled by a U.S. intelligence agency,”
A brother of the shooter reported that he had hallucinated, and had reported hearing voices. The brother remarked that Santiago had been discharged from the National Guard after being demoted for “unsatisfactory service” and had asked for psychological help, “but received little assistance.” The brother asked, “How is it possible that the federal government knows, they hospitalize him for four days, and then give him his weapon back?”
No one seemed to have an answer.
The updates carried on into the evening; the facts and the factoids crept along, and the “officials” popped up and disgorged their industrialized sound-bites, and disappeared. Some of the “officials” were “senior.” All of them dazzled with their acute inductive reasoning. An FBI agent disclosed to the press, “Indications are that he came here to carry out this horrific attack.”
This same expert continued, presumably with a straight face: “We have not identified any triggers that would have caused this attack.”
Our topmost elected “officials” and officials-manque were on the case. Florida governor Rick Scott hurried to Ft. Lauderdale—to the executive airport—where he wondered how this thing could have happened in such a state as his Florida. The governor sternly warned that “the citizens of Florida will not tolerate senseless acts of evil.” Someone asked the governor whether this meant perhaps that the citizens would demand, and the government would provide, a rollback on the law permitting guns in airports.
The question affronted Scott’s sensibilities. How inappropriate! How insensitive to sully this moment of grieving with politics!
The New York Times later reported: “The shooting came as Florida lawmakers were preparing to consider legislation that would relax [emphasis mine] prohibitions on firearms. State laws allow for the purchase of rifles, handguns and shotguns without a permit, though a license is required to carry a concealed weapon in the state.”
The governor, perhaps seeking to further quell anxiety, reported that he had been in close touch with custodians of higher authority:
“I have reached out to President-elect Trump, and spoken to him and to Vice President-elect (Mike) Pence multiple times to keep them informed, and they told me whatever resources that we need from the federal government, they would do everything in their power to make that happen.”
By Saturday afternoon (as I write this) the nonsense had curdled, as it always does by the second or third day of such stories. Curdled into stale righteous partisan argument over where to place “the blame”: Terrorism? Psychosis? Guns? Traumatized veterans?
All potential for redemptive action had dissipated, once again. The usual “official” posturing and the nonspeak of the usual “authorities” laid bare, as they always do, a few precious revelations of unintended truth. We ache to know “the truth” of what touched off the Ft. Lauderdale airport shooting, as we ache for the truth every time something like this happens. Terrorism? Psychosis? Our citizen arsenal of three hundred million guns? Which of these stands out as the first cause, the prime mover, of the ongoing nightmare that rides on our sleep?
I have come to believe that even to ask this question is tantamount to burying the answer. Each component in this triad has its body of impassioned accusers, and each body of accusers tends to dismiss the other two as trivial or false.
I believe that these “discrete” elements of our national humanitarian crisis are not discrete at all; they are mutually reinforcing elements of a diseased whole, and they cry out to be addressed—healed—holistically. And with reason, rather than partisan defiance.
No one need take me aside and explain quietly what an absurd pipe-dream this sounds like; what a useless appeal to “kumbya” mush. But I don’t intend altruism here; I intend to promote survival, as individuals and as a society.
We can begin collectively to address terrorism, untreated mental illness, and the obscene availability of demonic firearms.
Or we can reconcile ourselves to a baleful updating of John Donne’s holistic call: “Never send to know for whom the ‘official’ pretends to mourn. He pretends to mourn for thee.”
Pulitzer Prize-winning journalist Powers (Mark Twain: A Life, 2005, etc.) presents two searing sagas: an indictment of mental health care in the United States and the story of his two schizophrenic sons. Having previously published notable books in the realms of biography, media criticism, small-town ethnography, investigative journalism, and memoir, the author once again demonstrates his versatility. The unforgettable title of his latest book derives from a callous comment made by a politician in 2010. As Powers demonstrates through in-depth reporting and his own personal experience, even when those in positions of authority sincerely believe in the importance of helping those who are mentally ill, meaningful care tends to receive short shrift at budget time. The author never wanted to write a book about mental health because of the nightmares that would arise discussing highly personal matters. However, he decided that the urgency for improved mental health policy and funding in this country compelled him to forge ahead with a manuscript. By the time of his decision, nearly a decade had passed since his younger son, Kevin, had hanged himself in the basement of the family home a week prior to his 21st birthday. Then, as Powers and his wife continued in the grief and healing process, their only remaining child, Dean, began to show signs of schizophrenia. A psychotic break on a Christmas morning melted away the author’s resolve to refrain from writing this book—and readers are the beneficiaries. Powers intends for the book to comfort families dealing with severe mental illness, to shock general readers with examples of atrocities befalling the mentally ill, to show that “crazy people” are rarely dangerous to anybody but themselves, and to push for significant reform. “I hope you do not ‘enjoy’ this book,” he writes in the preface. “I hope you are wounded by it; wounded as I have been writing it. Wounded to act, to intervene.” This hybrid narrative, enhanced by the author’s considerable skills as a literary stylist, succeeds on every level.
People tend to believe that writers write to make money. There’s actually something to that, given the givens. But dollars are not the only motive. Not all writers are obsessed with chasing the Golden Fleece of the Best Seller—not after building up the scar tissue of a few published-but-obscure books, anyway.
It has been my experience that writers who survive their shattered early dreams and press on are writers who care about the craft of writing. These writers write mainly to be understood.
This is why the endorsement of NO ONE CARES ABOUT CRAZY PEOPLE, written by Susannah Cahalan and posted below, means something special to me.
Ms. Cahalan is the author of the 2012 New York Times bestselling memoir BRAIN ON FIRE: MY MONTH OF MADNESS. I have never met Ms. Cahalan, so I can’t say for certain whether or not she set out to write a best-selling book. My instincts tell me that this was a secondary consideration at best. My instincts tell me that she wrote this book for the reason most writers write good books. She wrote it because it was a book that she could not not write. She wrote it to be understood.
Susannah Cahalan was a young rising star of New York journalism and an avatar of the Fabulous life when at age 24 she was blindsided by a hideous brain affliction—triggered by a mysterious pathogen—that inflamed her brain, drove her to grotesque behavior, and threatened to obliterate her very identity. She was saved, and restored, through the intervention of an acutely observant physician after nearly everyone else had decided that she was a hopeless schizophrenic. In a sustained act of will nearly as arduous as the attack on her brain, she traced the narrative of her temporary madness by interrogating her own damaged memory and those of her relatives and friends. The result is a raw, eloquent, unsparing narrative of personal witness that now stands as a beacon for those who don’t understand the forces that can ravage our fragile brains, but who want to understand. Susannah Cahalan wanted to understand, and then to be understood.
I’m going on here a bit because I want to make it clear how much I value Ms. Cahalan’s notice, on two levels: first, as one “citizen” of the mental-illness sub-nation reaching out to another, and second, as a writer reaching out to a writer. We writing creatures are a lot less secure in our self-evaluations than you might expect by looking at our, uh, deathless prose. We spend a lot of time wondering whether we are making an imprint on the world, or even making sense.
Susannah Cahalan, you understand, and you deserve to be understood. Thank you.
SUSANNAH CAHALAN’S NOTICE:
“No One Cares About Crazy People” is a woefully necessary kick in the teeth to society’s understanding and treatment of mental illness. Reading Ron Powers is always an event — you can expect expert research and rich reporting in an engrossing style — but what makes this book soar is the passion of Powers’ conviction based off his own intimate experiences with schizophrenia. I put this book down days ago and I’m still reeling. It’s the rare book that breaks your life into a before and an after.
Earlier this week I posted a call for caretakers of the mentally ill–usually parents, siblings and offspring–to throw off their habitual cloak of invisibility and silence, and launch a crusade against public cluelessness and apathy; in particular, public policymakers. The link below, focusing on my home state of Vermont, shows just one example of legislative inertia: the ongoing crisis of too few beds for too many patients in psychotic states:
And here is one searing response to my call for speaking out:
“I wonder what I would do if Tom should decide he can no longer bear this burden. If I should find him gone one morning. Would I lay down beside him, hug his lifeless body in my arms, and go to meet him? Or would I give my life to him? Tom’s voices threaten to kill him and his family. From his letters for help, which are heartbreaking, he says “they are certainly adding other types of frequencies that are causing extreme agitation, sometimes depression, anxiety, stress; voices described as scary or haunting or terrorizing; more death threats against me and my family and they won’t quit. I have driven as far as the coast and cannot get this off of me. The police just come and put me in the hospital. I don’t know how to be more clear to them and they aren’t listening at all”. What if, in the dark of night, in his madness, he did not see the mother he loves but a horrifying delusional apparition there to harm him and his family; perhaps the act of killing me would finally get him the help he needs, a chance to quiet the voices and terrifying paranoia, and find some peace.
“I have only been afraid of Tom once, his delusions of people coming to harm him, and me not understanding. I never know the right thing to do or say. His brain is screaming at him, voices only he can hear, shouting down any shred of reason that may be left. His despair and fear so great I am afraid he will lash out at anything, anybody nearby, not knowing what he is doing in his insanity. Any suggestions of getting help are met with incredulous sighs and anger. Why don’t I listen, why don’t I understand, I am the one that needs a doctor, I am the one that is in denial. I hide the knives that night.
“We leave Tom alone now. He doesn’t talk anyways, he doesn’t hear us, or if he does he responds with something unrelated and unintelligible. I buy health food and leave it around, hoping he will get some nutrition in him He isolates in his room, sometimes for weeks at a time, not bathing, sitting so long his feet and legs swell up so bad he can barely walk, drinking coffee. He is going mad in the room I had remodeled for him, to keep him safe for as long as I could. I pray he will go into a coma and I can now call and say come get him and help him, he is a danger to himself.
“I go to do the dishes, but they are already done. I don’t remember doing them. I lose track of time, I wait. The wolf at the door will surely come bursting thru any day now; it is almost six months of no meds. One afternoon Tom comes to me, puts his arms around me and says ‘I love you mom.’ I’m still a light in his mind, I’m still there.
“The months go by. I ask myself how much worse can it get, but I already know, much worse. My nightmares turn into terrifying faces coming out of the dark.”
My upcoming book’s title, NO ONE CARES ABOUT CRAZY PEOPLE, is intended as ironic: it is taken from a notorious, subpoenaed email written in 2010 by an administrative aide to Scott Walker. The aide was trying to shield the then-Milwaukee County Executive from accountability for a mental-hospital scandal that was unfolding at the time.
In the few weeks that I have been publishing this blog, I’ve found myself thinking about an alternative title, one that lacks irony and only somewhat overstates the truth.
That title would be: NO ONE KNOWS ABOUT CRAZY PEOPLE.
For centuries, society has hired, or elected, custodians to see to it that the mentally tormented are kept out of sight and out of—well, out of mind. Those who take for granted their place in the “normal” world prefer to sidestep the colossal moral challenge—the primal fear—triggered by walking, talking evidence that people very much like them can go insane. (“There, but for the grace of jails. . .”) Thus, the mentally ill continue to struggle for their humanity under a cloak of social invisibility, and silence.
None of this is to suggest that people in the throes of psychosis should be left to roam the streets. Hospital treatment and supervision are imperative during such episodes. The problem is this: despite the growing consensus among research psychiatrists that a patient’s integration into a sympathetic community can dramatically reduce the symptoms of brain disorder, progress toward this goal remains slow: impeded by the cloak of invisibility and silence.
Few people have better understood the human spoilage guaranteed by this cloaking than the great pioneering reformer Dorothea Dix, whom I quote in the epigraph to NO ONE CARES ABOUT CRAZY PEOPLE. In remarks to the Massachusetts legislature prepared in December 1842, following her tour of mental asylums in the state, the small and sickly crusader declared:
“I have come to present to you the strong claims of suffering humanity. I come as the advocate of the helpless, forgotten, insane men and women held in cages, closets, cellars, stalls, pens; chained, naked, beaten with rods, and lashed into obedience. . .”
Time has brought improvement to the plight of insanity victims caught in psychosis—the untreated, the undiagnosed, the wrongfully incarcerated, those who refuse to confront their illness and aggressively repel efforts at help.
Time has not brought enough improvement. Not early enough improvement.
The cloaked suffering of the mad thrives, and it thrives. NO ONE CARES is laced with accounts of insane jail and prison inmates, many of them unindicted, who took their lives in their cells or in solitary confinement (I hope against hope that you might read this, Governor Chris Christie of New Jersey, and reverse your support for this gruesome form of soul-murder), and who thus died beyond the range of public attention, save for a few readers of transient news accounts.
Thus, “No One Cares” is fed by “No One Knows.” The two collide, and collude.
Thus far in this essay I have focused on the “invisibility” aspect of “No One Knows.” Of equal destructive importance, I believe, is the silence. The self-imposed silence that mutes the voices of those most entitled—and, I think, obliged—to break the silence.
I speak of the close friends and relatives, parents especially, of the afflicted. These people are qualified not by professional training or certification, but by a precarious vantage-point that no one else can share who are uniquely qualified by direct observation with psychosis.
And yet here is one of the most desolate truths about “No One Knows”: it is far too often a by-product of silence. Self-imposed silence. Silence maintained by those closest to the victims of mental illness who are in active psychotic states. This usually means their relatives. Typically, “relatives” means parents. And “parents” often includes the sub-category of single mothers, women who for one reason or another have been left to care for their volatile children—often male children, as a statistical fact. (Men typically develop schizophrenia between ages 15 and 24; women, between 25 and 34.)
Left to care, and left to scream in silence as police and community social-service agencies designed to help them often fail during episodes of crisis—or in pre-crisis. Police remain under-trained in this area, or not trained at all. In too many cases, the desk-man either shrugs off the frantic phone call or the squad arrives only to make matters worse. Paramedics and social workers feel hamstrung by coils of legal restrictions created to protect the civil rights of people in psychosis who “reason” that they don’t need help. (People in psychosis are, by definition, people deprived of reason.)
And so the family caretakers scream in silence—while their deracinated children scream aloud their suicide threats or violent threats against others, often including the caretakers, as the untreated psychosis deepens. and the cop on the phone explains (in essence) that the screamer cannot be detained unless he or she “constitutes a threat to others,” and that the uttered threat is not enough; the psychotic victim must actually carry out the threat, which, of course, in theory, law enforcement exists to prevent.
The caretakers scream in silence. And their urgent silent screams go unheard by the world around them. And the cloak remains in its suffocating place.
The reasons for self-imposed silence aren’t hard to track down. They’re rooted in human nature. The fear of embarrassment—stigma—is a fundamental one. To appeal publicly for help for a struggling insane relative is to acknowledge that one has an insane relative. Most people live their lives outside the community’s spotlight. To step into its glow for any reason can be terrifying. The imagined shame and ostracism such an admission might bring on is a powerfully, and sometimes fatally inhibiting burden.
Anxiety over the future of the victim is another. What if everybody knows she is schizophrenic? She will never get a job! She will never have friends! She will never marry!
And then there is the soul-crushing factor of futility. America, especially rural and suburban America, remains dotted—clotted—with service agencies, police departments, and courts that remain either stubbornly self-anesthetized to the gothic realities of psychosis, or else are paralyzed by the fear that any action they take might violate some law or statute or other restriction, real or imagined, that would make them civilly liable or criminally accountable for carrying out a good-faith intervention. Thus, far too many desperate mothers and fathers have called police, hospitals, lawyers—anybody—for help, against a background of menacing threats and the pounding upon a locked door, only to be told: “There is nothing we can do.”
This is surreal. This is grotesque. This is beyond the imagination of anyone in the “normal” world; only those who have endured it can appreciate the resulting dread that soaks the heart and blots out hope.
Schizophrenia has struck at both my children; once, fatally. I understand the heartbreak, the dread, the galactic frustration of my fellow survivors and sufferers who must watch their loved ones slip into a state that the world would prefer not to hear about, nor try to heal. I understand the powerful protective wish to remain silent.
And yet, in my core, I cannot accept the silence. I cannot accept it because silence is the lifeblood of “no one knows,” which in turn is the lifeblood of “no one cares.”
In my core, I want to confront all the silent sufferers—“confront” is the only word—and shout at them to shout their stories from the rooftops: to badger the newspapers and radio and television stations in their communities to pay attention to their stories, and amplify them, urgently and accurately, and damn the risks of stigma and anxiety and imagined futility. I want my fellow sufferers to raise a collective voice all across the nationwide archipelago of the mentally ill. I want an impassioned, fearless grass-roots movement to rise up and intersect with the hopeful, but top-down breakthrough of the recently enacted 21st Century Cures Act.
I want the “invisible” mothers and fathers and caretakers of our most helpless citizens to take up the banner of Dorthea Dix, and affront the conscience of emergency responders, police, doctors, judges, and the largely oblivious and benumbed legislators across the country. I want to see a great and vital conversation burst into public awareness: a conversation that until now has been conducted under the cloak: in furtive telephone calls, emails, hushed conversations, and within the several “confidential” websites where members may speak candidly under strict rules of confidentiality.
All these conversation forms are cathartic. None is enough.
I grant that my career choices have annealed me to public exposure and its consequences. My training and experience, now spanning five decades, has been in journalism, which has in turn led me to nonfiction narratives. Over this time I have learned gradually to overcome my own severe native reticence, and to place truth-telling (as I understand it) above all other considerations. I have grown comfortable with violating my own privacy. NO ONE CARES ABOUT CRAZY PEOPLE, if it is nothing else, is a testament to this.
I respect—I ache for—my good, grieving, terrified sisters and brothers who cannot yet imagine shouting their stories from the rooftops, seizing the world by its lapels and screaming, “YOU’VE GOT TO PAY ATTENTION!” I wish I could deliver them from their agony. I cannot. The hard truth (as I understand it) is that they must do it themselves, until their individual voices meld into one continuing thunderous voice. We must throw off the cloak. No one will do it for us.
Families and caretakers of severe mental-illness victims are still jubilant, and justly so, a day after President Obama signed the 21st Century Cures Act into law. The $6.3 billion health care bill marked a historic triumph for America’s most helpless and marginalized sub-population and for Congressman Tim Murphy (R-PA), a statesman of mental-healthcare reform. Murphy, a Naval officer and a practicing psychologist, fought valiantly for four years for acceptance of his Helping Families in Mental Crisis Act, which is enfolded into the new law.
Murphy’s several allies in his crusade have amounted to a “Dream Team” of warriors for mental-health reform. Foremost among them have been E. Fuller Torrey, the prolific author and brilliant pioneering critic of our country’s responses to its mentally ill citizens, and Dj Jaffe, the “ultimate insider” activist and author of the forthcoming book, “Insane Consequences” (Prometheus Books, April 11, 2017) for which Fuller Torrey has written the Foreword.
The new law (whose provisions have been widely reported) has spread joy and hope throughout the “nation” of stricken families, to a degree probably unimaginable to outsiders. I can attest that their messages have amounted to a collective folk-poem of gratitude.
Yet now that the law is safely on the books, we must temper our euphoria with active vigilance. As one of my correspondents put it this morning, “We must all be watchdogs.”
The Achilles Heel in the new law—widely debated during its route to passage—is its easing of restraints on the pharmaceutical industry’s strong impulses toward excessive production and marketing of lucrative psychotropic and antipsychotic drugs.
I will defer a detailed analysis of this weakness to the masterful essay below, written by Adam Gaffney for this morning’s New Republic:
But I will underscore Gaffney’s piece with an excerpt from NO ONE CARES ABOUT CRAZY PEOPLE–one that provides a context for the need to press forward from the Cures Act toward new legislative oversight of Big Pharma:
“That the rising flow of riches in the pharmaceutical industry might bring trouble in its wake—trouble in the form of litigation—apparently did not trouble the giddy pharma-entrepreneurs of the Reagan years and beyond. (And as the years went on and litigation spread and court settlements and fines seemed to add zero after zero to their totals, it grew clear that the entrepreneurs didn’t really care. Their sales figures were adding even more zeros.) The international catastrophe of thalidomide should have been recognized for the dreadful omen that it was, but for some reason this did not happen. The German-made drug, introduced in Europe in 1957 as a completely safe antidote to morning sickness and soon a global phenomenon, caused multiple thousands of birth defects in children of women who trustingly bought it—such as flipper-like arms and the absence of toes, legs, and ears. Roughly half the cases were fatal. Some of the litigation continues today. (Thalidomide was never approved for sale in the United States, yet the makers sent samples to American doctors, who passed them along to their unsuspecting patients, with the inevitable results.)
“The first serious American-made hint of bad consequences arrived with clozapine, whose makers flirted with legal reprisal before voluntarily withdrawing their new atypical drug. But it was the debut of another “atypical” drug, Risperdal (risperidone), that introduced Big Pharma to Big Lawsuit.
“Risperdal went on the market in 1994, a product of Janssen, itself a subsidiary of the pharma giant Johnson & Johnson, the largest marketer of medications in the world. The drug was sold as a treatment for bipolar disorder and schizophrenia. Its makers assured the public of its safety based on three internal trials before submitting it to the FDA for review. Somehow, the trials failed to demonstrate that the drug could result in fever, muscle stiffening, irregular heartbeat, trembling, fainting—and the dangerous disorder tardive dyskinesia.
“These complaints caught the attention of consumer protection agencies in thirty-six states between 1993 and 2004. The state’s full catalog of complaints would have made a Gilded Age railroad baron recommend prayer and penitence. They included allegations that J&J payed kickbacks to the charmingly named Omnicare Inc., the largest nursing home pharmacy in America, to prescribe Risperdal to the generally clueless seniors—many of them suffering from dementia. (Risperdal’s packaging includes a “black box” warning with this language: “Elderly patients with dementia-related psychosis treated with antipsychotic drugs are at an increased risk of death.” Risperdal of course is an antipsychotic. Caveat emptor.) The kickbacks included money, offers of paid vacations for doctors’ trips, and “lucrative consulting agreements” to prescribe Risperdal to more patients. Johnson & Johnson decided to contest these charges and lost. Omnicare, for its part, agreed to pay $98 million to resolve claims that it accepted this booty and thus violated the False Claims Act.
“J&J later reached separate settlements with Texas in 2012 and Montana in 2014 for $158 million and $5.9 million, respectively. Settlements with other states added up to $181 million.
“The dollar amounts of these state trial costs and settlements might lead a reasonable observer to conclude that they taught Big Pharma a lesson it would not soon forget. The reasonable observer is invited to read on, preferably while seated or holding on to a firm object. Not long after the turn of this century, settlements and verdicts against drug companies began to roll out from federal court trials on a monetary scale that obliterated the state-level penalties and threatened to obliterate the very notion of “scale” itself.”