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.
A little while ago, I idly clicked on my son Dean’s Facebook page and found the stunning post below. As I told him a bit later, my heart was still pounding. And it still is.
On the surface, this is an account by Dean of his attempted suicide about four years ago. (Our family had lost Kevin, Dean’s younger brother, to suicide in 2005 after his three-year struggle with schizophrenia deepening in to schizoaffective disorder.)
This at least is the surface account—which Dean has never talked about until this morning. On a more profound level, it is an extremely rare glimpse into the soul of a schizophrenia sufferer, written with blazing clarity and candor. In NO ONE CARES ABOUT CRAZY PEOPLE, I narrate that terrible day from Honoree’s and my point of view, as we realize that we have lost phone contact with him, then learn from police that his truck had been found beside Lake George, some thirty miles to the west of us, and then sit helplessly for hours, trying to absorb the possibility that we had lost our remaining cherished son.
I am inexpressibly proud of Dean for giving us this. He was a promising young writer until misfortunes in his life began to multiply, culminating in a psychotic break a few years after Kevin’s death. This essay tells me that Dean is working hard and fearlessly to regain and re-master his gifts. To which I say, Godspeed, my good son.
But the significance of the essay goes well beyond my fatherly pride for Dean. It should be read by anyone who believes that mental-illness victims have lost their humanity; that they no longer are capable of insight or of reaching out to the “normal” world.
And it should be read by sufferers themselves. One of your brothers has held out a lamp to illuminate the richness that remains in you.
“Three years and several months ago: i texted my buddy and boss as my gps led me to the wrong spot. “I’m lost.”
I saw a truck that looked like mine parked beside a trail. I parked there and started walking down the trail. Snakes got startled, several of them, slithering away as i walked past them as though they were frightened by me. As i walked i felt the tedium of daily life weighing on my shoulders.
I came here knowing there was danger only to face it and meet my fate. As the steps drew on and i felt tired bugs started swarming around my head. I had a vision in that moment of me several thousand years ago drunk and staggering and lonely. Death sounded like comfort.
I turned around and walked back as a crossed a small wooden bridge i saw trash in the water and my Eyes started to tear up as it crossed my mind that we are trashing this gift God gave to us. Then a low flying plane flew directly over head as if God was telling me you made your appointment i see you and all is well.
Then i got back in my truck and drove to Lake George. My eyes scanned my surroundings at a red light and they settled on a “no right on red” sign. I gunned the throttle and turned right on red. I pulled into the parking lot, left my wallet and my phone in the truck.
I got out walked to the beach took off my shirt socks and shoes and got in the water. It was July. There were other people in the water. It felt good. I walked out a little ways till i was waist deep and took a plunge. Suddenly i felt this wonderful energy running through my arms and chest as i held my knees to my chest. I was going to turn into a school of fish and swim off into open freedom. It was like i could breathe under water.
But before i took my first breath an off duty new York state trooper pulled me out of the water. My arms opened up wide like i was on the cross myself staring up at the sun as he dragged me out of the water and put me on my back on the beach. I wondered if God could see me. Then i looked down at the water and saw a boat, the Minne Ha Ha. It was as though some competing force was telling me the world is mine haha. Then a helicopter swooped over head. It was like a movie.
The first thing i said to him was, “it’s in the eyes.” His eyes were hazel. Then all these competing arguments about the origins of the world and God flashed before my eyes. My heart beat rapidly in panic. I saw Ireland with its eyes never closing even as europe fell asleep during a card game. This gave me hope that it wasn’t all as bad as it seemed. Then before even a second elapsed I was put on a stretcher and put in an ambulance with two emts with blue eyes and i panicked again.
“All i want to do is rest in peace,” i said to them. “Oh we hear you,” the man said to me. He flicked the lights above me on and off several times. Then they took me to the hospital and i heard birds chirping and saw lights flashing when i blinked my eyes.
Eventually they put me in the psych Ward and i got pissed that i was getting locked up again. 5 guys and i were standing around in a circle. I said “nobody here has any authority.” Then they bowed their heads. They bowed their heads as if the authority was spiritual. Then they all laid hands on me and put me on my bed and shot two needles in my butt. And i said “those shots better kill me.” The medics head jerked as i said this as he plunged the medication home.
Later as i reflected on it i thought to myself, “they pulled me out of the water.” Baptism, evolution, pirates. “They pulled me out of water.” I was baptised into my true spirituality by an off duty new York state trooper. It also symbolizes our journey out of the ocean and onto land. And if i had walked the plank it’s like they threw me a rope to pull me back on board.
And if he hadn’t pulled me out i might have breathed and i might be dead. I don’t even know his name, but i want to thank him.”
In case you’ve been kidding yourself that public care for the mentally ill is snugly enfolded in the bosom of America’s state government systems, and monitored by informed, crackerjack news organizations, take a look at the peculiar string of factoids stumbling forth from Oregon.
The factoids originate in a verifiable event. On Dec. 1, Governor Kate Brown announced her plan to close down the Junction City Mental Health Hospital, which opened with great fanfare just 18 months ago; boasts a 174-patient capacity, and offers employment to 422 people in a community that needs every job it can get.
That, as Dan Rather used to say, is what we think we know at the moment. Beyond this base, information remains sketchy, motivations murky, the announced rationale questionable, and the future of the facility’s patients up in the air, where the futures of such unfortunate human beings generally reside.
The governor herself—a Democrat, by the way, and thought of as generally progressive—has attributed the necessity to, brace yourselves, a tight state budget. Tight budgets are virtually always given as the reason for tapping into funds and facilities for mental health care, which in turn are virtually always the first areas to be tapped in a budget pinch.
But is Oregon really suffering a budget pinch?
Governor Brown pointed to a “projected” $1.7 billion revenue shortfall set against expenses for 2017-19. She intends to narrow this gap partly by raising taxes on cigarettes, liquor, and hospitals (a grouping that one does not often encounter). Yet a “Revenue Outlook” released by Oregon.Gov begins by reporting that “Oregon’s general fund outlook remains stable” https://www.oregon.gov/das/OEA/Documents/revenue.pdf and that revenues “are expected to total $19,526 million in the 2017-19 biennium, an increase of 8.4% percent from the prior period,” although $40 million below the September forecast.
So, again, to paraphrase Donald Trump—“Pinch?—or no pinch?”
Even if the Governor is drawing upon more reliable comparisons than are readily available to an outsider, it seems peculiar, bordering on bizarre, that she would choose the Junction City Mental Health Hospital as a first-round sacrifice.
Junction City opened to great applause and greater hope in March 2015, its features harkening back to the exalted “Moral Treatment” designs of the 19th century. (The cost was either $180 million or $84 million, depending on which Oregon press account you read, a testament to the quality of press scrutiny. As of this writing, no major outlet has done an in-depth examination of the proposed closing or the political dynamics behind it. My own calls and emails to Oregon reporters are as yet unanswered.)
Its rehabilitative amenities include a library, spiritual center, hair salon, fitness rooms, classrooms, a gym, and outdoor quads. Patients can go on outings (after a review process, learn social skills and money management, acquire cooking skills and learn how to call for help.
And in case those humane offerings might strike some taxpayers as a little—oh—cushy for people who are, well, you know; consider this: the alternative to clinical rehabilitation is, typically, jail or prison. These systems, dumping-grounds for an obscene number of afflicted people, add up to a far greater drain on public revenues than does rehabilitation. Oh, and by the way, they tend to be unspeakably barbaric. To the sane and insane alike.
In early May 2015, less than two months after Junction City opened, a public-interest group called Disability Rights Organization (https://droregon.org/bhu/) released a report that found “Oregon prisoners with severe mental illness are routinely tasered, pepper-sprayed, isolated, and denied access to adequate mental health care.” (“Isolated,” by the way, means “placed in solitary confinement,” the single most devastating assault prison guards can levy on a mental-illness sufferer.”)
As I write in NO ONE CARES ABOUT CRAZY PEOPLE, this list of sanctioned atrocities has changed hardly at all from the horrors of Bedlam Asylum more than 700 years ago, save for the technology.
I will continue to monitor the developments surrounding Junction City in the coming days, and the bedrock reasons behind the governor’s decision. Meanwhile, the links below offer a fuller discussion of some of the points I have raised.
Parents, siblings and friends are rejoicing over Wednesday’s passage in the House, by a 392-26 vote, of the seminal 21st Century Cures Act, a $6.3 billion bill to overhaul mental health care in America. The bill is expected to quickly pass the Senate and secure President Obama’s signature, transforming it into law.
Despite the euphoria and likely full passage, even its advocates acknowledge that the 21st Century Cures Act faces strong opposition from several influential sectors. The reliably progressive Senator Elizabeth Warren (D-MA) has criticized it for failing to constrain the “Big Pharma,” the notoriously profiteering multinational pharmaceutical industry, from profligate pricing and lax testing standards for protecting the safety of customers. On the other side of the spectrum, the conservative group Heritage Action for America,which has denounced the “gimmicky nature of the pay fors” in the Act—“the newly creating funding mechanism designed to bypass spending caps, or the overall level of spending.”
CongressmanMurphy pinpointed his satisfaction with the House vote while agreeing that it is far from a cure-all for serious mental illness in America: “We didn’t get everything we needed, but we needed everything we got.” The Congressman, who is a Navy veteran and a practicing psychologist, went to work on his Crisis Act in 2012, following the massacre of schoolchildren in Newton, Connecticut, by the 20-year-old Adam Lanza, who had murdered his mother before the shooting spree and who killed himself afterward.
I have devoted a couple of chapters to Congress’s history of ineptitude and indifference to mental illness in NO ONE CARES ABOUT CRAZY PEOPLE. In Chapter 13, “Debacle,” I examine the lingering social damage wrought by deinstitutionalization, the early-60s experiment in mass removal of patients from the nation’s flawed and overcrowded mental asylums without following through on guarantees that they would be cared for in a vast network of community-based centers operating without government oversight.
And finally, lest anyone imagine that the surviving mental and psychiatric hospitals have solved their problems, I offer the following short list of recent atrocities suffered by mental-hospital patients (all women, interestingly). I will add that my book takes its title from a string of horrific abuses, including at least one patient death by starvation (another woman, for whatever that may mean), that occurred at Milwaukee County Hospital in the years around 2010.
So: let us justly celebrate the House action on Wednesday in advancing the 21st Century Cures Act. But at the same time, let us not forget that much remains to be done—on the Act itself, and in our still-chaotic world of mental health care.
I just answered a post by dear friend from college and early-career days. He grew up in Sudbury, Ontario. He’s feeling a little down, like a lot of us, over the election, and expressed a wish to return to his hometown.
I don’t know that I managed to cheer him up, but his message reminded me of a passage from NO ONE CARES ABOUT CRAZY PEOPLE. It involves a night spent in Sudbury as I drove Kevin, then 14, from Vermont across Canada and then south through Michigan to commence his studies at the Interlochen Music Academy. I’m reposting it below. If not exactly a cheerer-upper, it at least is a reminder of moments of beauty that appear from nowhere, conjured by the fingers of a gifted child and his guitar. This was before Kevin’s fatal onset of schizo-affective disorder:
“That September, I drove Kevin the nine hundred miles to Interlochen. It was a memorable ride.
“We chose a route that took us north to Montreal, then westward on Highway 17 for six hundred miles, skirting Ottawa and then the vast and pristine Algonquin Provincial Park, its primitive interior saturated with lakes and moose. We ate hamburgers at a log-built restaurant and gift shop somewhere along the route, and it became our traditional stopping-place on future trips. Traditions were important to both boys, but especially Kevin. We stopped for the night in a motel in Sudbury, Ontario. At Sault Ste. Marie, we turned south into Michigan along Interstate 75. We crossed the Straits of Mackinac, linking Lakes Michigan and Huron, on the majestic suspended arc of the Mackinac Bridge that stretched five miles.
“Kevin was upbeat during the long drive, but he admitted to me that he was worried about meeting new people at the arts academy. For one thing, he said, he didn’t know any good jokes. I told him that jokes could be over-rated, and the best way to make new friends was to ask them a lot of questions about themselves. This went for girls too, I added. Girls especially.
“In our motel room in Sudbury, Ontario, I was unpacking toiletries from my suitcase. Kevin was sitting behind me on one of the twin beds. I heard acoustic guitar notes, and turned around.
“The lamplight brought out the gold in Kevin’s hair, and he was in his usual playing position, bent forward a little, head down, the sole of one messy sneaker planted on the arch of the other.
“The piece was short, but lyric, and haunting, like a medieval ballad, and as it went on I stopped unpacking and sat down on the bed beside Kevin and listened. When he had finished, and when quotidian sounds—traffic horns, voices in the hall, TV sounds in other rooms—had resumed their noise, I asked Kevin where he’d learned it and how long it had taken him to memorize it. He shrugged and said that he’d made it up as he went along. He was just doing some finger exercises.
“Some weeks later, walking with him around the Interlochen campus during a visit, I brought it up again. I asked my son if he could reconstruct that piece from memory. He gave an absent shake of his head; his attention, at that moment, was on a pretty girl riding a bicycle in and out of the sunlight. A temporary, beautiful, golden thing had passed through that motel room in Ontario that evening, and then vanished, a presence to be experienced only once, and briefly, and then never again.”
A new advance notice for NO ONE CARES ABOUT CRAZY PEOPLE (due March 21) has arrived–from Dr. E. Fuller Torrey, one of the true statesmen and -women of mental health-care reform. I’m humbled to receive it:
“Ron Powers and his wife never expected to visit the exotic lands of schizophrenia until their two sons became affected. A gifted professional writer, Powers takes the reader along on his explorations as he tries to understand why it happened and what to do. What he finds is ‘the most dreaded of all human mental disorders.’ Very readable and highly recommended.”
E. Fuller Torrey, MD
Author, Surviving Schizophrenia
Click here to read more advance notices for No One Cares About Crazy People.