THANKS FOR ALL YOUR SUPPORT!

Announcement

With this message, I will be ceasing new entries on this blog related to my book, NO ONE CARES ABOUT CRAZY PEOPLE. I will leave the blog online for an indefinite period so that I might be of help for those of you looking for connections with others in the sub-universe of mental illness.

I thank the many people who have viewed and responded to my entries over these months. You have been thoughtful, brave, and generous with your responses and ideas regarding mental illness–your own, and those of people whom you love. And your kindhearted reactions to the music, photographs, and stories of and about my sons Dean and Kevin have warmed Honoree and me immeasurably. I hope that my essays and reportage about the scourge of mental illness has brought solace and encouragement.

I suggest that those of you seeking support and a safe place to share your stories will consider the private Facebook site Circle of Comfort and Assistance. Membership requires a sponsor, but I will be happy to consider sponsoring any of you who write to request it. I would like to thank my team of editors and publicists at Hachette, the publisher of NO ONE CARES ABOUT CRAZY PEOPLE, for believing in my book and committing themselves full-out to its success.

Speaking of books, I highly recommend that you seek out and purchase Dj Jaffe’s powerful, informative new work, INSANE CONSEQUENCES: HOW THE MENTAL HEALTH INDUSTRY FAILS THE MENTALLY ILL. It is a treasury of informed advocacy journalism and practical guidance for those whose lives have been disrupted by the afflictions I’ve been writing about.

I thank my blog administrator Beth Jones for her unfailingly prompt and professional work. And I thank my literary agent, Jim “Agent Jim” Hornfischer, for doing whatever it is that agents do. Seriously, Jim, you are a writer’s dream of an agent and a close friend. Without your encouragement and guidance, my book would never have happened.

NEW CBS WEB SERIES ON MENTAL HEALTHCARE

The crisis in mental health care is rapidly becoming a featured topic of mainstream journalism.

CBS News has commendably chosen to spotlight this subject as the launch-point of its new experiment in long(er)-form video journalism, making use of its online digital resources. To quote from the network’s announcement: 

CBS Evening News Uncharted: State of Mind” is a new five-part digital series airing in May with new episodes released every Wednesday. The series will examine the state of mental health care in America in conjunction with Mental Health Awareness Month. More than 43 million Americans suffer from mental illness.”

The first episode aired last night, and I repost it here. I was among the contributors, along with Congressman Tim Murphy, former Congressman Patrick Kennedy, and Dr. Glenda Wrenn, the psychiatrist and the director of behavioral health for the Satcher Health Leadership Institute.

Rep. Tim Murphy
Former Rep. Patrick Kennedy
Dr. Glenda Wrenn

 

 

 

 

Not surprisingly, the most compelling figure in this episode is an embattled mother: Rocky Schwartz, whose two sons are afflicted with chronic mental illness.  (The National Alliance on Mental Illness has estimated that 60 percent of Americans suffering from mental illness don’t receive the care they need.)

Rocky Schwartz

Battles with un-cooperative health insurance companies have cost Ms. Schwartz and her husband more than $300,000, draining their retirement, college savings, home equity loans, and other personal savings.

Roman Feeser

 

The series was assembled by a young production team headed by the gifted and determined associate producer Roman Feeser. I am honored to have been a part of the first and some of the succeeding installments in this bellwether experiment in immersive journalism.

http://www.cbsnews.com/news/mental-health-where-are-we-uncharted-state-of-mind-episode-1/

Voices From the Sub-Universe

Today I introduce a new, occasional feature to my blog. Please see below:

Ron Powers

Voices from the Mental Illness Sub-Nation

Near the beginning of my recently published book about mental illness, “No One Cares About Crazy People,” I write: Too many of the mentally ill in our country live under conditions of atrocity.

I grew convinced of this over the three years of my research into schizophrenia and its related brain afflictions that include schizoaffective disorder and extreme bipolarity. My examples in the book cover the spectrum of atrocity: mis-diagnoses (often “drug overdose”) by doctors; judges who order young victims into jail instead of treatment centers; beatings, deprivation of medications, and the torture of solitary confinement behind bars; death on the streets from bullets fired by untrained police; the daily fog and helplessness of the untreated insane.

These and some other areas—arenas—pretty much covered it, I was convinced. The spectrum of atrocity suffered by the mentally ill in America.

I was wrong.

I had limited my investigations to the barbarities visited on the “crazy people” themselves. Only after the book’s publication in March did a companion realm swim into focus for me: the realm of ordinary people whose lot is to care for the afflicted. These include mothers, fathers, siblings and friends of the helplessly impaired thousands whom our social bureaucracies have neglected and rejected and crushed. In many ways, these family members are damaged and abject as the loved ones they seek in vain to rescue.

No one cares, to coin a phrase, about those who care about crazy people.

This realm rushed at me in emails to my Facebook page and to the blog I created that related to the book. It swelled up within certain websites that I, as a writer about mental illness, was invited to join. These sites are closed off to anyone but relatives of madpeople; an enforced set of agreements keeps their conversations private unless they grant specific permission.

The writers on these sites are almost exclusively mothers—a fact that in itself merits contemplation. Mostly middle-class, they span several income, educational and racial categories. They are seldom “natural” writers, yet no one could mistake what they have to say. They write with the rare pitch of truth-telling passion that James Agee memorably described as “the cruel radiance of what is.”

What they have in common is a collective story more urgent, more morally devastating, more viscerally real, than be expressed by the modes by which outsiders receive information about mental healthcare: statistics and news items and policy statements and political press releases, delivered in detached, passionless prose.

Today, this blog commences an occasional compilation of these mothers’ voices (and those of other relatives as they are available). I have obtained permission from each source quoted, and have withheld identities, although some gave permission for that as well.

My hope here is twofold. One is that the reader will feel the same emotions as I have: shock and indignation that such chaos and neglect exist in America’s mental health-care systems, causing such a vast archipelago of misery and terror. The other is that these voices will encourage others to throw off fears of stigma and shame and begin hurling their own voices, their own testimonies, into the world. Only by putting human faces and voices upon the statistical morass of this ongoing atrocity can we hope to begin decisive, lasting reform.

 

We will begin with an example of the commonplace indifference and buck-passing at the community level that makes a mockery of the very phrase “mental healthcare system.”

 

“I have only enough strength this morning for a few lines. [My daughter] was discharged in 2011 with no psychiatric follow up appt. We scrambled to find someone, but before we could, she was readmitted to a second hospitalization. She had to drop out of school for a second time. She was too far behind. The [caregiver] had put her on a drug that literally made her bang her head on the wall. Then she was hospitalized another two weeks, and upon discharge the social worker made no referrals or linkages for her in the community, and would not respond to my inquiry about her diagnosis. I asked and her response was, ‘What does that matter?’

“She came home with us, and for the next two months, it was awful. In February, she was psychotic again, and ran out of the emergency room when I tried to get an evaluation. She was noncompliant with meds, and thought she was pregnant. She spent two weeks in one hospital and I threw a fit about her being sent home to us again because I had a 14-year-old at home to protect. She had become physically aggressive as well. They sent her to a state hospital after my totally pissing them off, and she stayed there for two months.

“My biggest frustration is no linkages, no follow-up, no support, etc. We were treated like nosy people wanting to meddle in our child’s life but, she was sent home to me to deal with every time. And, each and every time, I felt more inadequate to help her and to protect my other child. [Her sister] was terrorized and slept with her bedroom door locked. She also became angry with me, her mom, for not being able to protect her from her sister.”

 

 

Sometimes the afflicted family member is not a child, but a parent. Whether or not that parent has consented to treatment—and often they have not—the strain suffered by the spouse and children can be overwhelming. This eloquently written post offers an example:

 

“I must say that helping my kids to navigate their life in relation to their Daddy’s serious mental illness is serious emotional work. Tonight I held my 10 year old ‘Baby’ girl as she opened up and told me that sometimes she just starts feeling sad and then ALL of her sadness comes over her at once. I held her as she sobbed and sobbed. ‘Why can’t we have a normal family?’ ‘Why can’t we live in our own house where I could have my own room?’ ‘Why did my Daddy have to get sick?’ ‘Will it ever be okay?’ ‘Why can’t the doctors just fix this?”

“I want to know too.

“She voiced the little girl version of the questions that claw at my own heart and mind. The grief and loss come at us in waves. Tonight we sat and cried together. Her tears streaming down my chest and mine in her hair. . .”

 

 

 

The mother below and her son are casualties of grotesque, yet pervasive laws that place the “civil rights” interests of a person in psychosis above the right of a doctor or psychiatrist to order antipsychotic medication and/or involuntary commitment to a center for treatment. In most states, such a patient may be treated against his will only if he “demonstrates a danger to himself or others.” Given that virtually the only way to “demonstrate” such a danger is to enact it, this misbegotten law often has the effect of pushing psychotic young people into criminality.

 

“When my grandson was 11, we begged for help to keep him safe and out of trouble. Several psychiatrists later and many tears and meds for him, we were told: wait till he gets in trouble with the law. Then he will get help. His school told us the same thing. No one understood that what they were telling us was our fear!! We didn’t want this sweet soul of a kid getting into trouble with the police! We were not that kind of family, he was not that kind of kid! We were not going to let that happen! We would fight, pray, restrict him, take him to every doctor we could find. . .

“When mental illness takes hold of our kids we have no control. Mental illness wins over and over again. He is now 20 and hanging with some more worldly friends, friends whose families must have said and fought for the very same things. We must fight and tell the world how our kids didn’t have a chance. They did not pray for mental illness any more than one would pray for cancer. We need to fight for hospital beds in which to keep our kids safe. Our kids need to be able to have safe places to live, affordable meds, support and understanding of their illness. God hear my prayer!!!”

 

 

 

From this message, and others, it is clear that not even psychiatric doctors can be automatically trusted to have the competence and temperament necessary to help their patients.

 

“A bad day at the doctors. Our city had to basically shut down [its psychiatric care center] because of diverted funds, but after waiting a year, my loved one got an appointment, which was today. In the past year, we had seen a private psychiatrist who didn’t [ participate in my state’s Medicaid program], but would prescribe anti-anxiety meds to help [forestall involuntary confinement]. But she would no longer see him.

“The appointment started off badly as this new doctor called for security before my son even went into the office—possibly because of [troubling] paperwork he had filled out or because of his unusual look. In any case, the security thing set him off more than usual and the doctor made him leave and he is not allowed to return. I listened to the usual four-letter tirade all the way home, my son saying he would never go to another doctor again and don’t ever ask him to. He got out of the car before I came to a full stop at the house. I am so not looking forward to what will happen tonight. De-escalation armor on.”

 

 

 

And then there is the judicial system. As with psychiatrists and doctors, judges are commonly assumed (by outsiders and families of the afflicted alike) to be specifically educated in the neuroscience of chronic mental illness. They are assumed to recognize their moral duty to proceed with exceptional care and knowledge in adjudicating the fate of the most helpless people on earth. Doctors and jailers, of course, are bound by the same expectations.

 

A special test of that duty is their understanding—or lack of it—of the fact that the single most destructive action against a mentally ill inmate (in fact, against any inmate) solitary confinement, which quickly trigger and/or deepen psychosis.

 

Judging by the content of this mother’s message, her schizophrenic son has been failed by everyone in this chain. Both he and his mother have paid the price.

 

“My son’s court case is tomorrow. What’s tragic is the fact I begged for help since November 1. I faxed over a Do Not Release letter stating he was a serious harm to himself and me. Now, my son has spent three months in jail and has been allowed to deny all medications. My son suffers from anosognosia [a clinical term meaning “lack of insight into one’s mental illness”]. So, tomorrow, he learns the painful truth that his competency evaluation came back not competent to proceed.

“My son believes he aced [his mental competency test] and is coming home to me. But the doctor found him incompetent. No shocker there! If they had only listened to me back on November 1, he wouldn’t have had to spend three months and counting in jail! Plus, I wouldn’t have been severely beaten and cornered in my own bathroom [by him] for a second time. Now, my severely delusional child has been off all medication for a month. Talk about starting from ground zero!

“What he will experience tomorrow will be criminal. He will learn he’s incompetent, while wearing shackles and handcuffs. I fucking hate our system!!! He doesn’t understand his illness. His rights will be taken away. He will suffer from the phases of grief even though it is he who is lost to us. He will be left in a jail cell awaiting placement in the state hospital, which could take one to three months because the waiting list is so long.

“I begged with my son to call Disability Rights to represent him but he said he didn’t have a disability even though he’s received Disability for 5 years! What’s even more fucked up is that Disability Rights said they could only talk to my seriously delusional child. That is why he had to call! What a joke! I know so many parents who have lost their children with a serious mental illness in jail. So, please pray and send out positive messages into the universe that he makes it through, and finally receives the help he deserves!

 

This mother’s son was a small and thin 17-year-old, when local police arrested him for trespassing. The mother writes that, in a psychotic state, he had wandered into a neighbor’s house and fell asleep on a couch. The neighbors called police, and who, instead of taking him to a care facility, put him in jail. The mother has repeatedly called for compassion and treatment for him; so far, her calls have been ignored.

 

“Today is another day. It’s so hard to move forward with my life. We are stuck in this insane limbo. My son called today [from jail], and says mommy, ‘the inmates that hand out the trays they took most of the food off my tray. The guards were standing there. They said I have to pay a debt. They say I have to pay them if I want to eat. Put money in [X]’s commissary Account so I can eat.’ Over the past month, our son was in solitary confinement for almost two weeks. They stopped his antipsychotics cold for four days. He has psychosis, and is hearing voices. After the assault [by inmates] two weeks ago, he has a concussion.

“He’s been denied an MRI, or an emergency-room visit, despite my pleas. His vision is blurry, headaches, and nausea. He is emotional from the head injury. They will not wake him for his morning antidepressants. Now tonight he has informed us they are trying to extort money by starving him. So he was crying again tonight. We hope next month he sees the forensic psychiatrist.

“[The jailers] extort money for visits, commissary, basic necessities, phone calls, fees, per-day jail incarceration fees, fines, restitution, medicines, doctor fees, etc. Our son was charged as an adult at 17. The boy who dances like Michael Jackson, and plays 5 instruments. He hears voices. He has auditory hallucinations, and Asperger’s. Fifteen times, I tried to hospitalize him. Instead He went to jail where he spent weeks at a time in solitary confinement. He was beat up, his vision is still affected. He still had not had an mri.,. Tonight he sits in jail at just 18. He is not a hardened criminal. He’s a good, sweet kid, he wouldn’t hurt a fly. Every day I pray he will come out of this alive. My heart is shattered!

 

 

Here is another example of solitary confinement used as a blunt instrument—to effectively punish the victim of a jail beating.

 

“I just got off the phone with my son. He was beaten up two weeks ago [by inmates], and the jail’s answer was to put him in lockdown [solitary confinement] for 23 hours a day by himself. I had him agreeing to meds but they gave him the wrong meds and now he won’t trust them. He has been in the county jail for six months, and finally saw a judge for the first time last week. Now they need six weeks’ revaluation. Meanwhile, they keep him alone in lock up. He can call me on his hour out. He just called screaming and crying to get him out. I can only tell him he needs to hang in there and we are doing the best we can. But he’s slipping more. And nobody in the courts seems to care. My heart is breaking. His birthday is Wednesday. I am a single parent, and he’s my youngest.” 

 

And here is another example of the foolish inadequacy of “danger to himself or others.” Given that virtually the only way to “demonstrate” such a danger is to enact it, the law generally does more harm than good.

 

“The doctor told me, “‘Wait, N—, he’s not bad enough yet, he hasn’t committed a crime!’ [And then he said], ‘Your son is an adult. He has the right to be crazy if he chooses.’ 

My son has slipped through the cracks in every instance. There’s no consideration for families living with an untreated psychotic person except when it’s too late. We live in fear of our own son.”

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.

Remembering Kevin on his birthday. Dean wrote and sings lead on this luminous ballad, "The River East of Home," my favorite among all the work they did together. Kev sings harmony and comes in with a towering solo about halfway through.Be sure to push the sound button up.

Posted by Ron Powers on Thursday, July 21, 2016

 

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