A Penetrating Review From a Dear Old Friend

Mike Miner and I were inseparable buddies in our last year in the School of Journalism at the University of Missouri. In those lamb-white days of spring 1963 that meandered innocently toward the world-shattering assassination of the following fall, we rollicked through the kind of friendship that has mostly gone missing in the present world of dread and suspicion and the bristling arsenals of hip.

We played some college pranks. One of them I think involved a football in a classroom; I can’t remember much more than that. We covered sports together for the J-school daily newspaper, we got permission to resurrect the campus humor magazine, Show Me (recently banned for, horrors, profanity). We saved our quarters and pooled them to treat ourselves once a month to a $1.50 pizza in town. We went to the movies and entertained grateful patrons around us by shouting wisecracks at the screen. We showed our Brando-esque wildness (“What are you rebelling against?” “Whadday got?”) in other ways: by sliding saltshakers across restaurant table surfaces, hoping they would hover on the very edge, until one didn’t and the waitress rushed at us.

You know. Wild stuff like that.

And we talked and talked. About the “future.” About what we would “be.” And we wrote and wrote. Newspaper articles, jokes for the humor mag, stuff.

We kept the friendship together after graduation. Mike went into the Navy and I wangled a magazine assignment to Hawaii that coincided with his ship docking at Honolulu, and we did that town. (Saw the John Wayne/Patricia Neal navy movie “In Harm’s Way” together; walked out of the movie theater verklempt, although we’d never heard of that word then. Drowned ourselves in chocolate milkshakes.) Then I went back to Chicago and Mike went off to the South China Sea.

He made it through. After his tour was over, we newspapered together in St. Louis and then Chicago. Toured Ireland and London, and my easy, delightful companionship tested the limits of Mike’s capacity to long-suffer.

And then. . .you know. . .time is the longest distance between two places. . .I headed to New York; Mike stayed in Chicago.

I always believed that Michael was destined to be the major writer between us. He knew theater, and knocked out several good plays and wonderful poems. His wit was sly and dry, and his literary gifts even then were enormous. He was better than I ever was. Still is.

And lo and behold, he did become the major writer. At a weekly paper called The Reader, he has built a name for himself as an institution of superb, intrepid reporting and a writing style that could keep company with Ben Hecht, Mike Royko, all those Windy City giants. Whereas I was kind of a nomad, Mike committed himself to a place, and mined it deeply for story. Some other pretty good writers have done that. Faulkner.

We kept in touch a little. Facebook made it easier when it came along. Still, it was sporadic.

In July 2005 the “future” arrived for me. Right between the eyes. My younger son Kevin, deep in schizoaffective disorder, hanged himself in the family basement.

A decade later I got it together enough to write my book about mental illness: NO ONE CARES ABOUT CRAZY PEOPLE.

And then, this week, my old friend Mike showed up again. In the form of the review that you will find below.

You talk about verklempt. You talk about friendship.

Thanks, Mike. Game of saltshakers sometime?

In No One Cares About Crazy People a father addresses his sons’ mental illness

COURTESY RON POWERS
Ron Powers’s sons Dean, left, and Kevin, right, pictured here as children, both later suffered from schizophrenia.

As you read No One Cares About Crazy People you might think it’s two books or you might think it’s one. There’s the book author Ron Powers tells us that he set out to write—a critical history of societal responses to mental illness—and there’s the personal story that compelled him to write this book—the raising of two sons who became schizophrenic, one of whom killed himself. An agent told Powers that to write one he must write the other. And so he has.

For a time beginning in college and continuing to the Sun-Times—where he won a Pulitzer Prize for TV criticism in the early 70s—Powers and I were close and had the forward-looking conversations young men have. Never—I repeatedly thought as I turned the pages of Crazy People—did anything cross our imaginations close to what lay in wait.

Crazy People is his response to that rendezvous. It draws on the wit and anger I remember, on research compelled by circumstance, and on paternal devotion then untapped in either of us. Powers has collaborated before—with Ted Kennedy on Kennedy’s memoir, and with James Bradley on Flags of Our Fathers. In Crazy People, Powers, the reporter and stylish writer, collaborates with himself, the father with a story.

The social history of mental illness, no reader will be surprised to learn, is doleful.

“The world of mental illness,” Powers writes, is everywhere; it hides in plain sight. “Its camouflage . . . little more than the human instinct to reject engagement with the pitiable, the fearsome, the unspeakable.”

Rather than illness we’d see witchcraft; rather than humans in need we’d see menace, and we’d feel a duty not to assuage agony but to hide it from sight. The places where the mad were hidden gripped the public imagination for their gothic mystery. Powers tells the centuries-long history of the London madhouse known as Bedlam; in Saint Louis, as he surely remembers from his years there, an institution for the mentally ill was known to one and all simply as “Arsenal Street.”

You kept your distance from Arsenal Street.

Mental illness can hide in plain sight because we don’t like to think about it. But take your own inventory as I take mine. Two members of my book group have grown schizophrenic children. One daughter’s closest childhood friend is schizophrenic; another daughter’s grade school Spanish teacher lost her husband when he was stabbed to death during a psychotic breakdown by their schizophrenic son.

Powers and his wife, Honoree Fleming, raised sons Dean and Kevin in Vermont, where Powers wrote and Honoree, a professor, taught biochemistry and did research. Both sons were bright and creative, and Kevin was a guitar prodigy. The instructors his parents found for him soon threw up their hands—they had no more to teach him. But he was not yet 21 when he hanged himself in the basement of his family’s home.

Do madness and creativity go hand in hand? Powers devotes a chapter to this ageless question, to which there are correlations to be cited but no clear answer. Asked by a teacher in grade school to identify human needs, Kevin wrote, “I need music.” He inhabited, his father tells us, an “inaccessible” inner world of music, though the yield of that world can still be sampled today, as in a concert at Interlochen and an album the two brothers recorded together.

Powers places emphasis on the power of stress to trigger psychosis, and much less emphasis on the role of genetics, though years earlier his own younger brother had killed himself. Creativity and stress were palpable presences in the young lives of Dean and Kevin, and it’s those lives that preoccupy their father.

One Friday night toward the end of Dean’s junior year of high school, he took a curve too fast and his car slammed into a tree. The understanding around town was that Dean had been drunk, though he wasn’t. The girl next to him suffered injuries she was years recovering from, and her parents crusaded to see Dean thrown in prison. The high school principal banned Dean’s picture from the yearbook. Awaiting sentencing, prison a clear possibility, Dean wrote, in an essay, “my life is like a river and I am being swept away helplessly.”

And in Crazy People his father writes, “These were the days and months and events, I am convinced, that launched my eldest son into his rendezvous with schizophrenia.”

But today, Powers reports, Dean’s last psychotic episode a few years behind him, “he seems in possession of himself, aware of his limitations, and ready to live on his own in the wider world.”

Powers also introduces readers to a word I’d never heard or read before: anosognosia, or, “the false conviction within a person that nothing is wrong with his mind.” Powers calls it a “cruel joke.”

I’ve always supposed the joke is that when the meds work they make the patient feel so clear-headed he decides he doesn’t need them any longer. So he hides his meds, as Kevin did, or flushes them down the drain. Then he reverts. Confronted, he lies. But Powers says changing a patient’s ways isn’t as simple as screaming sense at him or waiting for him to learn from experience. He says anosognosia is actually a physiological condition disrupting the brain’s ability to recognize the condition it’s in; it shows up in 50 percent of schizophrenia cases and 40 percent of bipolar cases.

As his book concludes, Powers puts anosognosia to use as a symbol of obliviousness and denial—our own. He has seen what the mentally ill ask of the world—which is simply a place in it.

“The mentally ill people in our lives, as they strive to build healthy, well-supported, and rewarding lives for themselves, can show us all how to reconnect with the most primal of human urges, the urge to be of use,” Powers writes. “To put it another way: the mentally ill in our society are awaiting their chance to heal us, if we can only manage to escape our own anosognosia and admit that we need their help.”

Does putting the shoe on the other foot this way seem a sentimental stretch? I would say yes—if Powers were writing only about a set of issues he wanted to wrap up in a fancy ribbon. But the project’s too personal for that. He’s told us stories about the mentally ill burned at stakes, chained in dungeons, flogged and lobotomized, and treated to à la mode theories that they’d do just fine if turned out onto the streets, that they aren’t really ill at all because crazy people are the only sane ones. This is the history of society’s predisposition not to give a damn about Dean and Kevin!

And Powers won’t have it. They speak and we must listen. They are his sons.

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Adventures in Audioland

ron powersBack in the Friendly Confines (credit to Ernie Banks) of Castleton after completing work on the audiobook version of NO ONE CARES ABOUT CRAZY PEOPLE. The project was accomplished at a beautiful, hilltop, state-of-the-art recording sound studio, Guilford Sound, in the woodsy Green Mountains of Southern Vermont. http://guilfordsound.com/ The owner is the innovative former rock drummer Dave Snyder.

ron powersFar from an easy job (imagine filibustering a bill for four and a half days, or being Chris Matthews), yet worth the throat-tearing effort on a number of levels.

The process put me back in touch with the book in a far more concentrated, analytical way even than the process of writing it, which was strung out over more than two years.

Also, it amounted to a good prep (I hope) for any interviews that might come my way.

Finally—a bit of inside baseball here—no more foolproof method exists for detecting flaws in one’s work than reading it aloud. And yes, dammit, I came across some passages that cried out for further attention–including matters of repetition, which is one of my bad habits. Including matters of repetition, which is one of my bad habits. Ha-ha! a little writerly humor there!!
The process is highly physical. Reading aloud involves the entire body, even when one is sitting down. (I was often distracted by the vigorous circling motions of my own right hand as I read; and my creaking chair caused an unseemly number of re-takes.) The strain of it makes you aware of certain muscles in the throat that you seldom use to the point of stress. You become aware in part because, late in each day, you find that you cannot count on these flabby muscles to form the sounds you expect them to; they’re tired of it. Your mouth might be forming an “O,” but what comes out is a measly little “eeeee.” So you pause to go back and do it again, hoping to get there before the producer blares in your headphones, for about the eight hundred nineteenth time, “COULD YOU GO BACK AND DO THAT AGAIN?!”

A sip of water helps, but the price of sippage is seepage. Audible seepage. You must sit still for several seconds while the sip makes its way through your digestive system, every drip and gurgle of the journey dutifully recorded by the CIA surveillance-grade mic in front of your face, put there to ensure that no sound gets lost in the telephone-sized booth in which you are being held without bail.

You realize—horrors!—that the process does not stop when the workday ends. When at last you are ensconced in a booth in a local diner, reading the newspaper while spooning up the chili con carne, you come to a Twilight-Zone kind of realization: as you silently read the words on the page, you can hear yourself narrating them through your mind’s ear, in the same annoying singsong voice you have been spewing forth all day, as you involuntarily calibrate which syllables just ahead need theatrical stressing.

And here you thought showbiz was pretty.

What I liked best about the experience was the collaboration: with the very cool young sound engineer Matt Hall across the window in the Vermont studio (see photograph), and with an amazing blithe spirit and gifted producer named Bob Walter, who directed everything through our earphones from his own studio in Los Angeles. Bob immersed himself fully in the nuances of the book, and coaxed me gently into more fitting intonations at several points. The three of us were Very Professional and Serious in the early going, until we (inevitably) stumbled upon the realization that we were all born world-class wiseasses; at which point every “COULD YOU GO BACK AND—” break in the narration was filled by an interlude of wacky voices, improvised shtick, name-dropping and outrageous insults. Our antics kept the inevitable tension at a minimum and made the hard work go easier.

All of this in the service of an audiobook that I hope will convey my full measure of love for my beautiful sons, Dean and the late Kevin, and my passion for illuminating the great human tragedy of schizophrenia, the affliction that took over their lives yet did not manage to extinguish their soaring human spirits.

The audiobook is in post-production as I write. Plans are to integrate excerpts from the boys’ guitar performances as they coincide with elements of the narration.

THE RIVER EAST OF HOME

Of all the music Dean and Kevin wrote and recorded together, this ballad is far and away my favorite. It is a quietly transfixing anthem of wayward drift and redemption. Dean composed it not long after his recovery from an addiction to alcohol that had taken hold of him after a terrifying car accident when he was 16, with him at the wheel. The boys recorded it at Dean’s apartment in Fort Collins, Colorado, where he’d invited his brother, by then afflicted with schizophrenia, to spend several months with him. Dean sings lead; Kev sings harmony and contributes the majestic solo midway through, which I describe below.

 

FROM CHAPTER 15 OF NO ONE CARES ABOUT CRAZY PEOPLE, “. . .something unexplainable. . .”

Dean’s self-willed recovery—reprieve is probably the better word—held benefits for his younger brother. Kevin was able to make it through his spring semester [at the Berklee School of Music] without another setback.  Dean invited him to spend the summer in Fort Collins, passing up the chance to return to his beloved Front Range for road-building work. He had rented an apartment on the first floor of a modest brown wood-frame house in a residential neighborhood not far from the university campus. Kevin gratefully accepted, bringing with him his Martin and amp, and the prescription drugs that were now a part of his daily obligations.

The two of them had a fine old time, the best time of their lives together. They played coffeehouses and bars around Fort Collins and along the winding mountain roads above the city. Sometimes Kevin set aside his guitar and backed Dean up on a borrowed drum-set, playing as though it were the only instrument he had ever touched. Dean wrote a new flurry of ballads, including the two best pieces of his life, and the brothers captured them all on the TEAC recorder that Dean had used for his earlier songs. When Honoree and I arrived for a mid-summer visit, the two were as eager to let us hear them as Kevin had been to play the Booby pieces for me in the Burlington airport two years earlier. They tugged us into Kevin’s room almost before we had set our bags down, and flipped on the TEAC.

We listened first to “Annie Don’t Wake the Day,” Dean’s madcap romp about a night on the town with a frolicsome, laughing girl who skips and dances through the revels, sits in briefly with a bar band, then whirls on, “back out on the street with the bright lights shinin’ away.” Dean sings lead vocals and alternates with Kevin in a jubilant guitar bridge, two solos apiece, the brothers driving hard, a pair of young tigers bursting loose from their cages.

“It’s been a long, crazy night, but don’t wake the day!”

That was for starters. The anthem that followed, the cathedral of notes and lyrics that meditate on loss and journey and hope, on redemption-through-letting-go, stopped our breathing and cupped us in its guileless majesty.

Its title was—is—will always be—“The River East of Home.” Dean wrote it and sang lead; Kevin, harmony. A bridge in the midst of the verses brings up Kevin’s guitar in a cascade of notes that seem to fall from a high place and gather for a moment in a pool before overflowing and dropping again, until they find resolution in the flowing melody at the base.

The opening image is of a figure on horseback, forging along a western mountain path until horse and rider fetch up “at some forgotten fountain.” The rider tries to push his filly on through. “But though it wasn’t wide/She buckled and she balked/She couldn’t see the other side.” The rider tells us of his years of roving between the wilds and mountains. Sometimes he’s on an Arizona highway, right down that center line. Sometimes, crossing water, he falls, and stays down “until I’m good and ready. When I can’t fight the current no more/You’ll find me in the eddy.”

 

But always, the chorus tells us, the rider is searching. Just as Yeats’s wanderer searches for the silver apples of the moon, the golden apples of the sun, the rider is on a quest for the elusive River East of Home. It sounds as though his quest will be eternal. But then, “One chipped and faded chapel shines up out of the valley.” The rider ventures through the doorway, because a voice, long forgotten, calls him. “I said my life’s been driftin.’ He said that there’s an answer. And if I just believe, this slender reed becomes an anchor.

“I let the river go.”

TO MY FRIENDS WHO FOLLOW THIS BLOG

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.

kevin-powers-guitar
Kevin’s hands

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.

Starred Review for NO ONE CARES ABOUT CRAZY PEOPLE

From Kirkus Reviews

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.

 

A GIFT OF WRITERLY UNDERSTANDING—THANKS, MS. CAHALAN!

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.

Photo Credit: By Pam Margolis [CC BY 3.0 (http://creativecommons.org/licenses/by/3.0)], via Wikimedia Commons
Photo Credit: By Pam Margolis [CC BY 3.0 (http://creativecommons.org/licenses/by/3.0)], via Wikimedia Commons
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.

A MOTHER SPEAKS

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:

https://vtdigger.org/2016/12/19/involuntary-psychiatric-hospitalizations-record-high/

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.”

Mary Welch

SPEAK OUT!

Scott Walker By Michael Vadon (Own work) [CC BY-SA 4.0 (http://creativecommons.org/licenses/by-sa/4.0)], via Wikimedia Commons
Scott Walker By Michael Vadon (Own work) [CC BY-SA 4.0 (http://creativecommons.org/licenses/by-sa/4.0)], via Wikimedia Commons
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.

the screamThat 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.

Dorothea Dix
Dorothea Dix

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.

More on this subject later in the week.

Governor Christie Strikes Again!

By Michael Vadon (Own work) [CC BY-SA 4.0 (http://creativecommons.org/licenses/by-sa/4.0)], via Wikimedia Commons
Yesterday he vetoed a bill that would have limited the use of solitary confinement. (As one of the most demonstrably mind-destroying forms of punishment available, it should be banned altogether, everywhere.) Now he is restricting funds for the most abject members of society, the seriously mentally ill. This points not only to Christie’s particular brand of heartlessness, but also to the destructive myopia of too many public officials about the hellscape inhabited by “crazy people.”

Read more about the bill here: N.J.’s mental illness public funding shift will neglect most vulnerable

Kevin and the Perfect Playboy Woman

Kevin Powers
Ron’s favorite photo of Kevin

In the late 1990s I contributed commentaries to Vermont Public Radio. I often drew upon Dean and Kevin for subject-matter. This piece, broadcast in 1997, is one of my favorites, and captures my younger son in all his instinctual goodness and decency.

Ron Powers/VPR Commentary

Kevin and the Perfect Playboy Woman

Promo:  This is Ron Powers.  What’s the best defense against sleazy junk mail?  Having a smart kid helps.  Stay tuned for a few minutes and I’ll tell you what I mean.

Announcer’s intro:  Researchers in Texas have discovered a new use for junk mail: it makes an excellent garden fertilizer.  Commentator Ron Powers is not surprised.

Commentary: I was scooping out the daily tonnage of junk mail with a backhoe the other day—when I spotted an envelope that was different from all the rest.  It was festooned with an oddly familiar logo; a pair of bunny-ears.  It was addressed to my son Kevin.  And then I spotted the legend stamped in the upper right-hand corner:

BULK RATE U.S. POSTAGE PAID BY PLAYBOY

Well, I opened it.  Call me a nuidge.  Inside were—guess what?–glossy photographs of young women with complicated hair, plunging décolletage and lip-gloss.  But here was the zinger: a personal message for my kid: because of his, quote, “proven good taste,” he was being invited to represent, quote, “The Sophisticated Male of the Nineties” and help Playboy Magazine construct—I quote again—“The Perfect Woman.”

“You read it right!” the copy burbled.  “From the many intelligent men in and around your state, we have selected YOU for our annual Perfect Woman Poll.”  The potential rewards included a vacation for two in the Bahamas; round-trip airline tickets to anywhere in North America and lots of cash.

The next page listed the questions that Kevin would have to answer.  The categories included “Vital Statistics” (the Perfect Woman’s measurements at bust, waist and hips); “Body Parts” (length and shape of legs, firmness of stomach, whether she should have an “innie” or an “outie”) and “Fashion Statements” (whether she should mostly wear bikinis, high heels, negligees, tattoos, handcuffs, or “nothing.”

Now, here’s what you have to understand about Kevin.  He still carries the cat to bed with him.  His passions include Monopoly, bagels with cream cheese, playing guitar and trying to make contact with Scottie Pippen of the Chicago Bulls.  Are we talking Sophisticated Male, or what?

How Playboy found Kevin was not hard to figure out.  A few months ago his older brother took part in a magazine subscription drive for the high school.  The family all chipped in.  Kevin’s choices were Snowboarding and Sports Illustrated.  This got his name into the computerized data system of subscription lists, which magazines buy and sell to one another.  Playboy was only a matter of time.

When Kevin got home from after-school ice skating, I asked him if he had ever thought what the Perfect Woman might be like.

He was still wearing an orange knit cap pulled down to his eyes, and his cheeks were scarlet from the cold.  He gave me his sidelong, you’re-tricking-me look.

“Like a grown-up?” he asked after a minute.  I nodded.  His blue eyes trailed upward in thought.

“Smart. . .” he said.  He thought again.

“Pretty. . .” he added.

“Who doesn’t smoke.

“A very nice attitude.

“Who skis or snowboards and likes to play sports.”  His gaze turned quizzical again.  “Why do you want to know?”

I told him he had received a brochure from Playboy Magazine asking for his ideas about the Perfect Woman.

“I did?” he asked.  “Where?”  and then: “Why did they write to me?”

I told him the letter mentioned his “proven good taste.”  Kevin tilted his head.  “How do I have good taste?” he asked. “What are you talking about?”

I decided to show him.  He was excited at first—the name “Playboy” was not unknown in the corridors of his school—but when I put the brochure in his hands, he looked at it for several minutes, and his mood changed.

“Those people probably smoke,” he said quietly.  He sifted through the enameled images of cleavage and fishnetting and pouty lips.

“It’s gross.”

And then, walking out the door of my study: “I don’t want to think about it.”

You know what?  The direct mail geniuses at Playboy Magazine got it right.  The kid does have proven good taste.  This is Ron Powers in Middlebury.

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