Top 10 Books of the Year

The Best Books of 2017

People magazine just named No One Cares About Crazy People one of The Best Books of 2017.

Click here to order a copy today.

 

My Interview With Molly O’Brien

While in Providence to give a talk to the powerful advocacy group,  the Mental Health Association of Rhode Island I stopped in for an interview with Molly O’Brien, a young and talented host for the innovative public-affairs webcast GoLocalProv. Here is the clip:

Read the full story here: http://www.golocalprov.com/live/pulitzer-prize-winning-journalist-powers-on-mental-health-in-america

The (Continuing) Education of a White Writer Regarding Black Americans and Mental Illness

This post is for two of the best women I know, the New York actor and activist Madeline McCray and her close friend Terrie M. Williams, the author of BLACK PAIN: IT JUST LOOKS LIKE WE’RE NOT HURTING.  

Terrie Williams and Madeline McCray

Madeline and Terrie, you tried to put me wise to the special challenges of African-Americans who suffer from mental illness. You reached out to me as I began research on NO ONE CARES ABOUT CRAZY PEOPLE.

You provided me with sources. You tried to educate me. I promised you that I would look deeply into this topic in my book. But in the end, I did not look deeply enough.

Recognition of this truth arrived, appropriately enough, on Mental Health Day, October 10. It arrived in the form of a young woman in Cleveland, an African-American service-staff employee at the Intercontinental Hotel. It arrived just minutes after I’d finished addressing an exemplary civic group on—well, on the topic of education. Education about mental illness. How important this kind of education is.

(from left) David E. Weiss, board chairman; Honoree Fleming; Ron Powers; Elizabeth Newman, president and CEO at The Centers for Families and Children Benefit Luncheon 2017.

It took a three-minute conversation with this soft-spoken young woman to make me realize that my own education has been incomplete.

This is a rich irony—or a well-deserved comeuppance, depending on your point of view. I wrote NO ONE CARES essentially as an effort at education. After schizophrenia invaded my family and attacked both my sons, triggering the suicide of one of them, my wife and I realized that we’d become citizens of a “sub-nation”: the largely opaque nation of the afflicted and their families. Years later, when I recovered my willpower, I decided to write the book as an attempt to widen public understanding (and my own) about the nature and the reach of serious mental illness. That, and to illuminate the gross deficiencies in the American systems of mental health-care, criminal justice, and political willpower in addressing the problem.

As I’d hoped, writing the book educated me—but incompletely, as I now understand.

It is not as though the book ignores the particular ordeal of mentally ill black Americans. At least the public symptoms of that ordeal. It covers the epidemic of fatal shootings, by police, of unarmed and psychotic black men on the street. It portrays the overcrowding of the nation’s jails by juveniles, mostly black, who have been charged with crimes but not yet tried; and the violence visited on them by wardens and guards.

All of this is important. Yet in merely evoking these familiar abuses, I failed to cross an elusive border: the border that defines the daily realities of a sub-nation within a sub-nation. The lives of African-Americans struggling with mental illness amounts to unknown territory—unknown, at least, to most white Americans, of which I am one.

Ron Powers – keynote speaker at The Centers for Families and Children Annual Benefit Luncheon

I was ushered across that border in Cleveland on Mental Health Day.

My guide, the young service staff member, approached me just minutes after I had finished speaking at the annual luncheon of the Centers for Families and Children at the Intercontinental. (I am withholding her name. It’s a sad possibility that in these hair-trigger times, her employment could be jeopardized by the very fact that she spoke up to me about a racially charged public issue.)

Woodlawn Avenue, East Cleveland

The Centers deserves a moment of illumination here. It is a sterling civic institution. A nonprofit with an annual budget of $55 million, it reaches out to the poor, the hungry, the under-educated, the sick, and the troubled—some twenty-five thousand clients—in a city striving to overcome chronic post-industrial poverty entrenched racial tensions. The racial stress is burned into the city’s history along lines of segregation in its housing patterns: most of its black and poor population is concentrated in the near East Side, and most of its white population farther west. Cleveland’s incidents of fatal police gunplay in recent years, highlighted by the shooting of the 12-year-old Tamir Rice in 2014, have deepened black Cleveland’s distrust, bordering on paranoia, toward the mostly white police department.

David E. Weiss

Amidst these overwhelming challenges of poverty and racial unease, the Centers for Families and Children persists as a national model of enlightened civic service and hope. Its board chairman, the lawyer and businessman David E. Weiss, ranks among the most socially engaged civic leaders in the country. Its new director, Elizabeth Newman, has re-ignited its six hundred volunteers with her own passionate sense of mission: to help people find job opportunities and early-education conduits for their children, provide food for hungry families, dispatch pharmacists to households to help manage nutrition and medications, find treatment for substance abuse, and summon emergency services in crisis situations.

And to co-ordinate intervention and help in the crises of the mentally ill. Elizabeth Newman explained this cornerstone service to me in detail:

Elizabeth Newman

“The Centers is equipped to support people with serious mental illness, this skill set actually sets us apart in the community. We routinely assist people living with schizophrenia. We have psychiatrists on staff, in addition to relationships with the local/regional hospital systems and emergency rooms. In terms of onset of psychosis, we are outpatient providers but work in partnership with inpatient providers, so it really depends on the level of severity.  Another agency in town runs the mobile crisis unit, but we receive referrals and connections to clients directly from that unit.”

Which brings me (in my round-about way) to the topic of this blog.

Ron Powers

As mentioned, I had completed my remarks and was standing amidst the departing luncheon attendees when she emerged from the mix of people. She wore the brown uniform of the hotel’s service corps, and her manner was hesitant; yet it was clear that she had something she wanted to say.

What she said was, “Thank you for speaking about schizophrenia.”

I sensed the urgency behind this polite comment and asked her: “Is there a history in your family?”

She hesitated for a moment, as if trying to decide whether she could trust me with an answer, and then:

“My mother. And my brother.”

There is no way to prepare for a response like this, no matter how much you expect it, no matter how often it comes. One rule of thumb is to avoid “condolences.”

I asked her the only questions that seem fitting, and necessary:

“Are they getting treatment? Are they on medications?”

She smiled just a little before answering; and the smile should have told me everything I needed to know. But she spelled it out anyway.

“Black folks don’t like to get treatment. Black folks see it as a white man’s disease.”

While I was digesting this, she added: “Black men don’t like to talk about mental illness. They see it as a sign of weakness.”

And then, as if recognizing the need to explain the obvious to a blockhead (accurate, I suppose, in this instance): “So, no. They aren’t getting any treatment.”

And there it was: a key to the inner realities of a sub-sub-nation. The culturally learned set of attitudes that makes it all the harder for doctors and psychiatrists to intervene in the mental-illness crises of African-Americans. African-American men in particular, who routinely suffer violations of their self-respect, their safety, their very humanity, at the hands (and guns) of those who view them as inherently alien, dangerous, unworthy of inclusion in society.

Which, when you think about it, is exactly the same way that many people view the mentally ill in general.

 

I left the Intercontinental Hotel in Cleveland as the educated educator. I thought of my friends Madeline McCray and Terrie Williams, and about the exasperation they must have felt at my failure to cross that border. Felt silently, without rebuke, in the way many African-Americans experience the myopia of their white friends.

Back home, I sought to verify the viewpoint of the young service-worker at the Intercontinental in Cleveland. Below are some samples of what I came up with. There are more, many more, as a Google search of “African Americans mental illness” will show.

–That African Americans are 20 percent more likely to experience serious mental health problems than the general population, owing in part to the exceptional stress they experience just living their lives. The problems include major depression, attention deficit hyperactivity disorder, recourse to suicide, and post-traumatic stress disorder (this last because African Americans are especially likely to be victims of violent crime).

–That many black Americans misunderstand what a mental health condition is and don’t talk about it. Many thus believe that a mental health condition is a personal weakness punishment from God.

–That stigma—which knows no color lines—triggers especial reluctance among African Americans to discuss mental health issues and seek treatment.

–That a pervasive deficit of information—education—causes many African Americans to have trouble recognizing the symptoms of mental illness and to underestimating its dangers. Some may think of depression as “the blues” “or something to snap out of.”

(The above examples are taken from https://www.nami.org/Find-Support/Diverse-Communities/African-Americans)

–That black Americans’ distrust of doctors has some factual justification: Blacks are “over-diagnosed with schizophrenia, frequently misunderstood by their psychiatrists, and largely disenfranchised,” in the opinion of William B. Lawson, the distinguished African-American professor and chair of psychiatry at the Howard University College of Medicine. (https://www.medscape.com/viewarticle/768391#vp_2)

 

A Closing Thought

This has been far from an easy blog entry for me to write. No one likes to own up to failures of understanding, especially in the fraught arena of of racial relations. As with NO ONE CARES ABOUT CRAZY PEOPLE itself, I at first resisted writing it at all. Then I decided I had to write it because it was the truth. I hope that it is read with an understanding that writers are often fallible—just like ordinary people.

________

The full recording of the interview with Elizabeth Newman and Ron Powers is available here: http://www.ideastream.org/programs/sound-of-ideas/finding-the-cure-for-aids-book-no-one-cares-about-crazy-people.

Additional coverage of the Luncheon in The Plain Dealer, the daily newspaper for Cleveland: http://www.cleveland.com/healthfit/index.ssf/2017/10/putting_a_renewed_focus_on_men.html

Solitary Confinement: Cries for Help and Voices of Despair from Victims’ Mothers

This blog has lately been focusing on solitary confinement of jail and prison inmates as an intolerable practice in our criminal-justice system. Solitary confinement is inhumane, unproductive as a “corrections” technique, and psychologically destructive. It must be abolished.

My mission is to encourage others who feel this way to petition their congressmen and women to initiate repeal—and to identify and support the several organizations who are already working toward this.

 

I recognize the odds against my voice making a difference. It is all too easy for anyone who’s not personally connected to a victim of “the hole” to utter tsk-tsk noises at a safe removal from Ground Zero. Neither of my schizophrenic sons was ever arrested and threatened with this living entombment. My wife and I have never had to watch helplessly as either of our boys disappeared into one of the jails around the country where this barbaric practice continues unchecked; where the mostly-young and often mentally ill inmates undergo tortures of the damned, and their mothers1 The reader will note that I write, “mothers.” The almost complete absence of fathers from this discussion or from any conversation on their offsprings’ mental illness is a phenomenon that needs further examination. And Pete Early, I am NOT looking at you! agonize while pleading in vain for justice, or at least mercy.

 

Therefore:

 

In this blog, we are going to eliminate the tsk-tsking middleman—me—and hear from a sampling of mothers at Ground Zero whom I know through correspondence. The rawness of their outrage and grief has given them a truth-telling eloquence that far surpasses anything I’ve written or will write. They speak for thousands upon thousands of similarly violated families who cannot or will not seek to make their stories public.  

 

I have edited their emails to me only lightly, for compression and clarity. I have included the identities of two mothers, who have given me their permission. One is Jennifer Tirkot of Coral Gables, Florida. The other is Kimberlee Cooper West, of Fruitport, Michigan.

 

We will begin with some brief entries from a blog kept over several years on a private site by Jennifer Tirkot. Ms. Tirkot’s epic struggle with the state’s corrections system on behalf of her brain-disordered son John far exceed the damage he has endured during several stretches of solitary. I am planning to devote a future blog to her nearly unthinkable plight. Pete Early has also written about Ms. Tirkot: http://www.peteearley.com/2017/02/06/mother-repeatedly-tries-to-get-her-psychotic-son-help-instead-he-beats-her-and-is-arrested-twice/

 

Entry No. 1: I wrote my son’s story to have him taken out of solitary confinement and transferred to the state psychiatric hospital. This is his 2nd incarceration in 2 years for having a brain disorder. The last time he was incarcerated for hitting a police officer and EMT worker. They were Baker Acting him for his psychosis when he hit them. They transferred him to jail and locked him away in solitary confinement for 10 months. I had no choice but to share my story with the world. Pete Earley is publishing it. My son spent last Christmas and this Christmas in solitary confinement for having a brain disorder.  That’s what we do now.  We lock them in solitary confinement in jails/prisons and refuse to medicate them. 

Entry No. 2: I would like to sue the State of Florida for over wait times for competency restoration. My son suffers from schizophrenia, schizoaffective disorder, personality disorder, bipolar, depression, and anxiety. He’s been in jail for over 7 months without medication.

Entry No. 3: He’s severely depressed and they are not treating his depression. Plus, his hands are all scared and his knuckles are red. I asked him what happened to his hands and he said he’s been hitting his cell wall to punish himself for hitting the patient. After 72 days in solitary confinement, he developed Bell’s Palsy, where the left side of his face became paralyzed. He refused medication for it because he said God was punishing him for hitting the patient. The left side of his face is now paralyzed. He’s been without medication to treat his schizophrenia, schizoaffective disorder, personality disorder, bipolar, depression, and anxiety for over 7 months. I’ve been told by Elaine, head of DCF Forensic Hospitals, they can hold him incompetent without medication up to five years.

Entry No. 4 (dated July 21 of this year): Today is my son’s birthday…he’s in solitary confinement for having a brain disorder and the State of Florida didn’t take my “Do Not Release” letter seriously sent to Brevard County Circles of Care psychiatric care unit. I can never imagine crying anymore..but…I cry in my sleep, I cry when I wake up, and when I think I can’t cry anymore…I can’t stop crying…Happy Birthday to my loving son…

 

 

This mother, whose tragedy I mention in NO ONE CARES ABOUT CRAZY PEOPLE, posted briefly, and searingly, on a private site:

October 22, 2014 Josh died alone in a jail cell. My 39-year-old son killed himself today. Josh hung himself in a solitary confinement cell in a prison south of St. Louis, Missouri. He died alone, afraid, and powerless. Josh needed help. Instead, he got punishment. Like all mothers, I had dreams for my children — dreams that didn’t include mental illness or prison.

 

I have written before of the nearly inhuman outrages, including solitary confinement, visited on Kimberlee Cooper West’s mentally ill adopted son Tyler, who still awaits trial on a minor charge after being incarcerated last February (!) Kimberlee has bravely encouraged me to tell Tyler’s story, with identification, and she has plunged into research regarding the lingering psychic damage of solitary confinement, which I will draw upon in a future blog.

 

Here is Kimberlee’s latest message to me:

 

Hello Ron. We as a society have to look at Solitary Confinement honestly. The studies have shown high recidivism rates. The psychological effects last a life time. Is that a healthy thing for society?  During solitary confinement, Ty called home dozens of times a day. He was screaming, crying, begging, for our help. He asked what is going on?  Please come pick him up. By this point he was further into his psychosis. He did not understand why he was there. He was suicidal, banging his head against the wall. No one intervened. He did not understand what was happening. There were times they forgot about him. Times he was not fed.

 

Four separate times our son was sent to solitary confinement. It was not because he was a bad kid. He has a serious mental disorder and is also autistic. The jail staff did not know what to do with him. He needed a hospital. They stopped all his antipsychotics cold turkey. This can lead to convulsions, And death. The medication insert warns “Do not stop medication abruptly.” Ty said “My insides and body are uncontrollably shaking.” He said “It feels like I have the flu. It feels like I’m dying. Mommy, I can’t breathe in here.” He has moderate COPD, from his reflux and dysphagia.

 

Why do they put people in solitary with breathing problems? Health problems are not considered. If they live or die, no one cares about inmates. The Jails are short on staff, so they forget about these people. They use their own formulary of a cheaper antipsychotic.  They waited many days before prescribing antipsychotics. CMH [Community Mental Health] decides when they are released. Social workers and case managers, are not doctors. CMH is not there weekends or holidays. This prolongs an inmate’s time in solitary. 

 

Muskegon County Jail has a doctor only on Fridays. They save money by not using doctors. Nurses take the place of doctors. So many inmates will confess to anything to end solitary confinement. Guilty or innocent, it does not matter. Research has shown that autistic people do not benefit from solitary confinement. Yet I know several who are in solitary. It can cause lifelong problems for the autistic. Our son has the maturity of a 12 year old. He has never hurt anyone. Now he has trauma to add to his list of disabilities. Jail staff do not consider these mitigating circumstances. There still are no laws on the books to protect our autistic and mentally ill kids. Ty has experienced delusions and has been in a fog.

 

Solitary accelerated our son’s mental illness. From there on we were on a downward spiral. . . Our independent forensic psychologist has described Ty as in acute turmoil, in a hypomanic state with major depression and diminished coping mechanisms. . . 

 

[The idea of solitary is] to “teach a lesson.” That I challenge. How does that work if someone has an adolescent brain, is mentally unstable or withdrawing from drugs? . . . If I locked my teenage son in his room and tased him I would go to jail. If it is not o.k. for me to do it, then why can they? . . .

 

We unconsciously assume that those thrown into solitary confinement are exclusively men. This letter, from the mother of an adopted daughter, attests otherwise:

 

[Our daughter] has been in solitary confinement several times in NYC and another urban area. One time, she was merely transferred and they automatically put her in solitary for 3 weeks. We got to visit her once for 1 hour. We drove 5 hours to get there. Most depressing visit I can recall. All metal, no touching, no hugging or human tenderness allowed.

When people do not “jump” as requested, they put you in solitary to “teach you a lesson,” as they have told her many times. You get 1 free hour per day, to shower, but that is it. No calls either. Just letters. That is the only form of communication. Another interesting fact is that many, many, many prisoners are adoptees. Many of them have mental health issues, but instead of dealing with that outside the system, thy are remanded to jail/prison. [Our daughter] spent over 2 years in federal prison and is now in a county jail, awaiting sentencing. She is hoping to get out in a month or so. But then she will serve 1.5-3 years on federal probation. If that gets violated, they frequently use it as a means to “throw you” back into prison.

The criminal “injustice” system is a travesty in its present state. I say, “tear it apart and start all over again,” building a system that treats those with medical and/or mental health issues as human beings first, and criminals last. Criminals are not born. They merely took a wrong turn. I do not believe they should be punished for life and/or altered immeasurably. Climbing out of the “hole” society has created for troubled souls is fraught with hazards, roadblocks, and generally impassable terrain.

 

I will be posting more parents’ testimonies regarding solitary confinement as time goes on. I welcome any repostings of this that readers care to make.

 

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.”