Here is another look into the frantic “sub-universe” of families whose lives have been deformed by the presence of mental illness. It is a story of what can happen to a patriotic veteran who returns home to find himself overwhelmed not only by psychotic tendencies, but also by the bumbling ineptitude and bureaucratic rigidity of hospitals–in particular, in this case, a Veterans Administration medical center in Ohio. The story is told by Kevin Landis’s devoted wife Nikki.
“I’m in that terrible place where I’m watching him fall apart, completely lost and separated from reality, and nobody seems to believe me.”
This is Nikki Landis speaking. Nikki Landis is a 37-year-old wife and mother of 16-year-old twins and three younger children. In her Facebook postings and in her communications with me, she comes across as a blithe spirit: bright, vital, endearing, fond of travel and books, an embracer of life, and devoted to her family.
“I’m married to the most amazing, intelligent, strong, caring man in the world,” she has told me.
And yet her marriage has pulled Nikki Landis into a grotesque and broken realm: a parallel universe that that entraps people at random and imprisons them in a morass of nightmarish cruelty and suffering, and muffles the sound of their voices when they try to call for help. It is a universe mostly invisible to the mass of “normal” people who brush against it every day, and yet one that diminishes the “normal” as well, in insidious ways they seldom notice or suspect.
It is the parallel universe of the mentally ill, and, too often, of the loving relatives who try to help them.
“Why does nobody listen?” Nikki Landis asks. “Why does everybody insist, ‘It will be OK’?”
Nikki’s husband Kevin, who’s 39, is in the grip of psychotic behavior. He has suffered psychotic episodes for the past ten years. None of the support or treatment systems designed to help people such as Kevin seem able to do anything for him. In Nikki’s view, no one cares.
“I don’t understand why it is so difficult after 10 years of this for people to understand that I’m not being dramatic or exaggerating. But these same people will question, two weeks from now, why I didn’t do more. Why I didn’t react differently. Why I didn’t say the right thing that could have stopped all of this.
“Even the doctors act oblivious. ‘Why didn’t you tell us he was doing this or that?’ they will say. And I do. I tell them, and nobody hears the words coming out of my mouth. Then somehow everyone finds a way to blame me.”
Adding to Nikki’s burdens is the fact that her twins suffer from autism.
Kevin was Nikki’s high-school crush in Germantown, Ohio (pop. 5547), but Kevin, two years ahead of her, didn’t notice. He joined the a police department after he graduated. Nikki went off to college. A day after the terrorist attacks on the World Trade Center in 2001, Kevin showed up at the town recruitment center to enlist in the Army. After basic training, he was deployed to Kuwait as a machine gunner in February 2003 with the elite 101st Army Airborne Division, the “Screaming Eagles.” A month later he was in Iraq.
Near the city of Al Hillah in Babylon Province, Kevin’s company was ambushed. Enemy soldiers were firing at him from 30 feet away. “He can still feel the bullets zinging past his head,” Nikki told me. “A grenade rolled right past him.”
Somehow Kevin escaped injury—combat injury Other enemies were attacking him more subtly. Iraq is a sub-tropical region, and, like many combat troops in Iraq, he was issued a weekly dose of Mefloquine, a drug in tablet form that acts to prevent malaria transmitted by mosquito bites. Mefloquine can trigger side effects in some users, such as depression, severe anxiety, and psychotic symptoms associated with schizophrenia.
After his three-year tour was up, Kevin returned to Germantown, where he and Nikki began dating in 2006. Kevin resumed his career as a policeman in another department. The two were married a year later. They started their family. Along the way, Kevin began behaving erratically. Sometimes his words and behavior terrified the children, and his wife as well. The assumption at first was that the young veteran was suffering from post-traumatic stress disorder.
Kevin has never been violent toward Nikki or the children. But his paranoia induced him to scream terrible things at his wife. “I’m the bad guy,” Nikki told me. “He shouts at me all of the things he wanted to scream at his parents thirty years ago. He mixes me up with his mom in his mind. He has left the house to live in his car more than a hundred times in the past ten years. Right now he is living at his parents’ house because I can’t do this anymore. I can’t watch.”
And, in Nikki’s view at least, the agencies of therapy and restoration have refused—or have been ill-equipped—to help Kevin, or her.
In April 2016, after years of resisting treatment, Kevin agreed to be examined at the Lindner Center of Hope, a leading private treatment center in Ohio. There, he was diagnosed with bipolar disorder—one of the “family” of brain diseases that include schizophrenia and schizoaffective disorder.
The doctors prescribed Depakote, a sodium-based medication used to treat seizures and bipolarity, and the couple returned home. The Depakote worked well for a while, then began losing its efficacy. By October, Nikki said, her husband was out of control. He had been ramping up to a big dysphoric mania, and the second week of October he blew. He raged like I’d never seen. He was sweating so badly that he looked like he had just stepped out of the shower fully dressed. He was raging and panting and very scary. I knew he was suicidal.”
By now, Kevin was off the police department and out of work. The Landises, fearful that their medical plan would not cover inpatient stays (they later learned that it would) turned to the federal agency created precisely to protect and restore combat veterans such as Kevin Landis: young patriots who would not hesitate to risk their lives when their country was under attack. This was the Veterans Administration—specifically its medical center in Dayton, Ohio.
The couple had avoided the VA because they had heard the horror stories that reached scandal proportions just a few years ago: waiting periods so lengthy that some patients died before they could receive treatment (the average backlog at one point reached 115 days); falsified documents; negligent care. But now they felt they had no choice. At least Nikki did. She called upon a desperate tactic to persuade her husband. “I told him if he didn’t go to the hospital, I would have to divorce him. I’d said this before, but this time it worked.”
It turned out that the stories they’d heard about the VA were a little on the rosy side.
“The Veterans Administration has been nothing short of evil in helping him,” Nikki says. “worse than I can describe. I have a hard time talking about it still.”
Kevin Landis entered the VA hospital on a Friday night in late October and remained there for eighteen days. During that time, Nikki said, psychiatric doctors refused to allow Kevin to discuss his combat experiences in Iraq. Given that most combat veterans have to be coaxed and cajoled to break their silence about what happened to them—a necessary “first step” on the road to recovery—this doctor-enforced gag imposed on Kevin seems to defy reason.
As for his diagnosis of bipolar disorder from the private hospital, it cut no ice with the VA, Nikki told me. “The VA has a policy that they don’t accept outside diagnosis.”
(My online check of Nikki’s assertion led me to an NBC News story filed on May 22, 2012. It detailed the frustrations of a veteran of the Afghanistan war named Daniel Hibbard, and contained this passage: “Hibbard, who lives in Louisville, Ky., has been twice diagnosed at Veterans Affairs facilities with post-traumatic stress disorder since 2010. But something unexpected happened last month: Hibbard received a letter reversing his PTSD diagnosis. His new diagnosis, which was assigned without an in-person examination or assessment, is personality disorder.”)
(“‘It makes me feel like I’m being called a fraud, a fake,’ Hibbard said of the diagnosis. ‘You might as well go ahead and burn my record and say I was never in the military.’”)
On the following Tuesday morning, Nikki received shocking news. “The doctor met with him for about ten minutes. He was in a paranoid state and told her that I had been researching bipolarity for years, and had a shelf full of bipolar books so that I could convince doctors he was bipolar and drug him up to control him and ruin his career.”
Kevin swore to his wife that he didn’t say this. “But to be honest, he very well may have.” Whatever the case, “she ‘undiagnosed’ him. She then spent days defending her actions, refusing to look at his chart from his outpatient doctor, and accusing me of terrible things.”
Nikki sensed that something was not right. “A nurse told me that this doctor went out of her way to make sure patients were labeled ‘malingerers’ so that they couldn’t get VA benefits. This doctor started saying he didn’t have PTSD or bipolar; he had a ‘personality disorder.’ On his chart she wrote that she believed both of his parents had personality disorders (she never met either one), and that I had a personality disorder as well.
“I googled ‘VA’ and ‘personality disorder’ and learned that there had been several VA scandals in which doctors were told to diagnose mentally ill veterans with personality disorders. If the VA says you have a personality disorder, it disqualifies you from VA benefits for mental health. When I brought this up to her, she accused me of being paranoid. And she wrote in his chart that he was doing all of this for money, and that his police pension would be big. In fact, Kevin just got approved for his police pension on Wednesday and it puts us below the poverty line.”
“In the end,” said Nikki of the doctor, “she sent him home on Effexor, which is one of the worst possible drugs for bipolar. It took four months and two more hospitalizations to detox him from the Effexor.
“It’s so hard for me to think about that time, how he was treated, the phone calls I got when he was crying, him not even knowing where he was or how long he’d been there. And the doctor treating both of us the way she did. It was exhausting and emotional, and just devastating. My kids saw me crying, my kids missed their dad, and my 8-year-old son said, “Mom, I’ll never be in the Army because they make the men fight and then don’t take care of them.”
Nikki Landis’s love and support for her troubled husband has never wavered. She does not deviate from her insistence that she is married to the most amazing, intelligent, strong, caring man in the world.
“But sometimes that man goes away. His body is there, but his ability to laugh, to be kind, to care—it’s gone. His ability to know who I am—it’s gone.
“His own kids don’t recognize him, and say things like, ‘Why is dad laughing so much when nothing is funny?’ Or, ‘Why does Dad think bad things about you?’ Or, ‘Dad doesn’t look like my dad.’ It’s heartbreaking. Literally, you feel the pain physically inside and it doesn’t go away.
“He hates me right now. It’s not the first time, but it never gets easier. And sometimes I hate him too. I hate the sick him, the illness that convinces him that I am hurting him or out to get him. I hate the part of him that can’t fight back.
“I’m pretty sure we are headed for another hospitalization but our insurance runs out in 20 days. I don’t know what I will do then. I’ve applied for Medicaid and we haven’t heard a word.
“It’s very lonely. I’m only 37. I loved to travel and explore and LIVE! I’m a fly-by-night, wild child, creative type, earthy sort of person. Kevin was the down to earth responsible one. I’m not cut out for this, but I’m doing the best I can. Most of all I miss my husband. My kids miss their dad.”
In January of this year, thanks to a generous extension of Kevin’s insurance coverage by a former police chief, the couple was able to return to the private hospital for a new diagnosis.
The psychiatric doctors found that Kevin was now suffering from schizoaffective disorder—the worst known variant of schizophrenia, combining this disease’s symptoms with the added ingredient of paranoia.
At this writing, the Landises are awaiting a hearing with the state agency that handles his disability pension. It has been postponed a time or two. Meanwhile, Kevin is on meds. Some sorts of meds.
On April 23, Nikki emailed me:
“He woke up today just fine. Completely the old Kevin. I won’t hold my breath, but I pray it lasts a few days. I cling to these brief respites.”
Today I introduce a new, occasional feature to my blog. Please see below:
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 theuniverse 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.”
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.
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.
Beginning in a few days, I will be posting, on this blog, some audio and, later, video tracks of my late son Kevin in performance. These will showcase his more mature work–if “mature” is the right word to describe a gifted young musician who, in the fog of schizophrenia, took his life a week before his 21st birthday in 2005. I’ve published a few pieces before this, but they feature Kev mostly as an early adolescent, sometimes in duets with his older brother Dean–who also was struck by schizophrenia, but who is stabilized at age 35.
I have mixed feelings about offering up these audios and videos. From a personal standpoint, it is still difficult for my wife Honoree and me to hear Kevin’s music sixteen years after he left us. Until this past weekend, I had not been able to bring myself to look at the videos–recorded mostly at the Interlochen Academy for the Arts, where he spent his prep years–since his death. Last week I finally braced myself, dug the cassettes out of storage, and brought them to a technician in nearby Rutland for transfer to the MP4 format, which enables editing and sending the material to my blog administrator. On Saturday, notified that the transfer was ready for viewing, I returned to the studio. I made myself stand beside the technician and watch the monitor screen as it shifted from blue to footage of the Interlochen jazz ensemble, with a T-shirted Kevin pumping out one of his glorious solos. I held it together. At this writing, Honoree has not viewed the tapes, but she has signaled her determination to do so.
The second reason for my mixed feelings is related to the first. This blog is followed by many parents who have lost children of their own to the awful scourge of schizophrenia. It doesn’t take much imagination to understand that many of these good, bereaved people will experience the pain of recovered memory as they watch. For this, I am genuinely sorry.
Yet my reason for posting these sounds and images of Kevin has nothing to do with indulging my own sorrow, nor of activating anyone else’s. It certainly has nothing to do with promoting Kevin as somehow more deserving of attention than the countless other young victims of brain disorders. Quite the opposite: my goal is to celebrate the tremendous joyful life-force that was Kevin–and, by extension, the equally precious, and unique life-forces within all his brothers and sisters who have been taken or diminished by serious mental illness.
Every parent or other surviving relative of a mental-illness casualty harbors rich memories of a child in the full exuberance of his or her life–a time of hopes and dreams unlimited, until the unthinkable occurred.
Kevin was nothing if not generous and humble–he was “notorious” for giving up his own solo time to fellow musicians who yearned for a little spotlight. He would have held these young people in his big-handed embrace. He would have insisted, correctly, that each one of their lives was as precious and filled with potential as his own. He would have insisted on consecrating his music to all the beautiful young souls who seldom if ever enjoyed the pleasure of a “solo,” yet enriched the earth around them, each in his or her own way.
So, please: if you can, enjoy Kevin’s music in the same celebratory spirit that he played it: the spirit of life, and laughter, and friendship, and of giving up a solo to a friend every now and then.
This is one of my favorite photographs of Dean. I took it during our visit to Italy in 2008, three years after Kevin’s death. Honoree had dreamed of a family visit to Italy for years, and we finally made it–but not in time for our younger son to enjoy the splendors of the country with us. Dean was 27 then, still devastated by the loss of his brother–perhaps more than we realized–but still resilient, even as the “prodromal” phase of his own affliction with schizophrenia was advancing. I made this photo through the window of a cafe beside a harbor on Capri, where Honoree and I were having a light lunch. Dean, who was still capable of joy and discovery, had decided to take his notebook and pen outside, where he positioned himself on the rocks by the water, in the sunshine, and channeled his inspiration into his journal.
Dean was then two years from his own psychotic break, triggered by romantic loss, but really the inevitable result of several years of accumulating stress, including his beloved brother’s suicide. As of today, Dean is still fighting gallantly to regain the equilibrium he maintained on that sunlit vacation. He lives in the warm embrace of our household in Vermont. My account of his saga–described in NO ONE CARES ABOUT CRAZY PEOPLE–is a testament to all the unknown battles being waged by victims of this horrible scourge who still can muster the mental resources, and the deep wells of character, to carry on their daily struggle for a meaningful life.
I admire Dean and his late brother more than anyone I have ever known or known about–including heroes of politics, war, literature, or any other field of endeavor. I know that many thousands of young men and women struggle as ardently as my sons, in anonymity, away from public recognition and perhaps scorned and feared by the strangers who encounter them. My book, besides being a journey of inquiry into the long history of mental illness, is meant to be an affirmation of Dean’s and Kevin and their brave brothers and sisters
I never glanced into the journal entries that Dean created in the exhilaration of that sunlit day on Capri. He didn’t volunteer to show us what he’d written, and Honoree and I respected his boundaries, and did not ask.
But I know that the words Dean set down are irradiated with his loving ardency and eloquence. Maybe someday I will look.
A little while ago, I idly clicked on my son Dean’s Facebook page and found the stunning post below. As I told him a bit later, my heart was still pounding. And it still is.
On the surface, this is an account by Dean of his attempted suicide about four years ago. (Our family had lost Kevin, Dean’s younger brother, to suicide in 2005 after his three-year struggle with schizophrenia deepening in to schizoaffective disorder.)
This at least is the surface account—which Dean has never talked about until this morning. On a more profound level, it is an extremely rare glimpse into the soul of a schizophrenia sufferer, written with blazing clarity and candor. In NO ONE CARES ABOUT CRAZY PEOPLE, I narrate that terrible day from Honoree’s and my point of view, as we realize that we have lost phone contact with him, then learn from police that his truck had been found beside Lake George, some thirty miles to the west of us, and then sit helplessly for hours, trying to absorb the possibility that we had lost our remaining cherished son.
I am inexpressibly proud of Dean for giving us this. He was a promising young writer until misfortunes in his life began to multiply, culminating in a psychotic break a few years after Kevin’s death. This essay tells me that Dean is working hard and fearlessly to regain and re-master his gifts. To which I say, Godspeed, my good son.
But the significance of the essay goes well beyond my fatherly pride for Dean. It should be read by anyone who believes that mental-illness victims have lost their humanity; that they no longer are capable of insight or of reaching out to the “normal” world.
And it should be read by sufferers themselves. One of your brothers has held out a lamp to illuminate the richness that remains in you.
“Three years and several months ago: i texted my buddy and boss as my gps led me to the wrong spot. “I’m lost.”
I saw a truck that looked like mine parked beside a trail. I parked there and started walking down the trail. Snakes got startled, several of them, slithering away as i walked past them as though they were frightened by me. As i walked i felt the tedium of daily life weighing on my shoulders.
I came here knowing there was danger only to face it and meet my fate. As the steps drew on and i felt tired bugs started swarming around my head. I had a vision in that moment of me several thousand years ago drunk and staggering and lonely. Death sounded like comfort.
I turned around and walked back as a crossed a small wooden bridge i saw trash in the water and my Eyes started to tear up as it crossed my mind that we are trashing this gift God gave to us. Then a low flying plane flew directly over head as if God was telling me you made your appointment i see you and all is well.
Then i got back in my truck and drove to Lake George. My eyes scanned my surroundings at a red light and they settled on a “no right on red” sign. I gunned the throttle and turned right on red. I pulled into the parking lot, left my wallet and my phone in the truck.
I got out walked to the beach took off my shirt socks and shoes and got in the water. It was July. There were other people in the water. It felt good. I walked out a little ways till i was waist deep and took a plunge. Suddenly i felt this wonderful energy running through my arms and chest as i held my knees to my chest. I was going to turn into a school of fish and swim off into open freedom. It was like i could breathe under water.
But before i took my first breath an off duty new York state trooper pulled me out of the water. My arms opened up wide like i was on the cross myself staring up at the sun as he dragged me out of the water and put me on my back on the beach. I wondered if God could see me. Then i looked down at the water and saw a boat, the Minne Ha Ha. It was as though some competing force was telling me the world is mine haha. Then a helicopter swooped over head. It was like a movie.
The first thing i said to him was, “it’s in the eyes.” His eyes were hazel. Then all these competing arguments about the origins of the world and God flashed before my eyes. My heart beat rapidly in panic. I saw Ireland with its eyes never closing even as europe fell asleep during a card game. This gave me hope that it wasn’t all as bad as it seemed. Then before even a second elapsed I was put on a stretcher and put in an ambulance with two emts with blue eyes and i panicked again.
“All i want to do is rest in peace,” i said to them. “Oh we hear you,” the man said to me. He flicked the lights above me on and off several times. Then they took me to the hospital and i heard birds chirping and saw lights flashing when i blinked my eyes.
Eventually they put me in the psych Ward and i got pissed that i was getting locked up again. 5 guys and i were standing around in a circle. I said “nobody here has any authority.” Then they bowed their heads. They bowed their heads as if the authority was spiritual. Then they all laid hands on me and put me on my bed and shot two needles in my butt. And i said “those shots better kill me.” The medics head jerked as i said this as he plunged the medication home.
Later as i reflected on it i thought to myself, “they pulled me out of the water.” Baptism, evolution, pirates. “They pulled me out of water.” I was baptised into my true spirituality by an off duty new York state trooper. It also symbolizes our journey out of the ocean and onto land. And if i had walked the plank it’s like they threw me a rope to pull me back on board.
And if he hadn’t pulled me out i might have breathed and i might be dead. I don’t even know his name, but i want to thank him.”