This article by Natasha Tracy in Huffington Post spells it out, folks: the menace that every parent and caretaker of a mentally ill victim has dreaded since Donald Trump (and Paul Ryan and others before him) gained power in national Republican politics. Our helpless, blameless charges are being pushed to the edge of a precipice.
So much of the money needed to combat serious mental illness and safeguard its victims is enfolded into the Affordable Care Act. Its repeal–perhaps not likely, but eminently possible–would be tantamount to a brutal eviction notice slapped on the millions of people who now live in some degree of humane circumstances thanks to mental hospitals, community care centers and other forms of supervision and medication. Back into the streets. Back into the mercies of predators. Back into deepening psychosis unchecked by medications and counseling. Back into their centuries-long prospects of incomprehension and early death.
It is clear that Donald Trump has not paid a seconds’ worth of attention to the realities of serious mental illness, and this fact increases the likelihood of a reign of terror upon these victims. In this, he is hardly alone among politicians. Recall that only a few weeks ago, Chris Christie was blithely opining that solitary confinement was just fine with him as a means of punishment–or emergency shelter. (The consensus among psychiatrists is that solitary confinement, even for brief periods, is the most catastrophic of all remedies in the criminal-justice system; it not only degrades the mental stability of “normal” prisoners, but drives those in psychosis deeper into irrecoverable madness.
I urge you to sign every petition, join every march, telephone every congressperson, take part in any coalition that has a voice in preserving Affordable Care. The alternative is a new Bedlam.
Of all the music Dean and Kevin wrote and recorded together, this ballad is far and away my favorite. It is a quietly transfixing anthem of wayward drift and redemption. Dean composed it not long after his recovery from an addiction to alcohol that had taken hold of him after a terrifying car accident when he was 16, with him at the wheel. The boys recorded it at Dean’s apartment in Fort Collins, Colorado, where he’d invited his brother, by then afflicted with schizophrenia, to spend several months with him. Dean sings lead; Kev sings harmony and contributes the majestic solo midway through, which I describe below.
FROM CHAPTER 15 OF NO ONE CARES ABOUT CRAZY PEOPLE, “. . .something unexplainable. . .”
Dean’s self-willed recovery—reprieve is probably the better word—held benefits for his younger brother. Kevin was able to make it through his spring semester [at the Berklee School of Music] without another setback. Dean invited him to spend the summer in Fort Collins, passing up the chance to return to his beloved Front Range for road-building work. He had rented an apartment on the first floor of a modest brown wood-frame house in a residential neighborhood not far from the university campus. Kevin gratefully accepted, bringing with him his Martin and amp, and the prescription drugs that were now a part of his daily obligations.
The two of them had a fine old time, the best time of their lives together. They played coffeehouses and bars around Fort Collins and along the winding mountain roads above the city. Sometimes Kevin set aside his guitar and backed Dean up on a borrowed drum-set, playing as though it were the only instrument he had ever touched. Dean wrote a new flurry of ballads, including the two best pieces of his life, and the brothers captured them all on the TEAC recorder that Dean had used for his earlier songs. When Honoree and I arrived for a mid-summer visit, the two were as eager to let us hear them as Kevin had been to play the Booby pieces for me in the Burlington airport two years earlier. They tugged us into Kevin’s room almost before we had set our bags down, and flipped on the TEAC.
We listened first to “Annie Don’t Wake the Day,” Dean’s madcap romp about a night on the town with a frolicsome, laughing girl who skips and dances through the revels, sits in briefly with a bar band, then whirls on, “back out on the street with the bright lights shinin’ away.” Dean sings lead vocals and alternates with Kevin in a jubilant guitar bridge, two solos apiece, the brothers driving hard, a pair of young tigers bursting loose from their cages.
“It’s been a long, crazy night, but don’t wake the day!”
That was for starters. The anthem that followed, the cathedral of notes and lyrics that meditate on loss and journey and hope, on redemption-through-letting-go, stopped our breathing and cupped us in its guileless majesty.
Its title was—is—will always be—“The River East of Home.” Dean wrote it and sang lead; Kevin, harmony. A bridge in the midst of the verses brings up Kevin’s guitar in a cascade of notes that seem to fall from a high place and gather for a moment in a pool before overflowing and dropping again, until they find resolution in the flowing melody at the base.
The opening image is of a figure on horseback, forging along a western mountain path until horse and rider fetch up “at some forgotten fountain.” The rider tries to push his filly on through. “But though it wasn’t wide/She buckled and she balked/She couldn’t see the other side.” The rider tells us of his years of roving between the wilds and mountains. Sometimes he’s on an Arizona highway, right down that center line. Sometimes, crossing water, he falls, and stays down “until I’m good and ready. When I can’t fight the current no more/You’ll find me in the eddy.”
But always, the chorus tells us, the rider is searching. Just as Yeats’s wanderer searches for the silver apples of the moon, the golden apples of the sun, the rider is on a quest for the elusive River East of Home. It sounds as though his quest will be eternal. But then, “One chipped and faded chapel shines up out of the valley.” The rider ventures through the doorway, because a voice, long forgotten, calls him. “I said my life’s been driftin.’ He said that there’s an answer. And if I just believe, this slender reed becomes an anchor.
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.
Earlier this week I posted a call for caretakers of the mentally ill–usually parents, siblings and offspring–to throw off their habitual cloak of invisibility and silence, and launch a crusade against public cluelessness and apathy; in particular, public policymakers. The link below, focusing on my home state of Vermont, shows just one example of legislative inertia: the ongoing crisis of too few beds for too many patients in psychotic states:
And here is one searing response to my call for speaking out:
“I wonder what I would do if Tom should decide he can no longer bear this burden. If I should find him gone one morning. Would I lay down beside him, hug his lifeless body in my arms, and go to meet him? Or would I give my life to him? Tom’s voices threaten to kill him and his family. From his letters for help, which are heartbreaking, he says “they are certainly adding other types of frequencies that are causing extreme agitation, sometimes depression, anxiety, stress; voices described as scary or haunting or terrorizing; more death threats against me and my family and they won’t quit. I have driven as far as the coast and cannot get this off of me. The police just come and put me in the hospital. I don’t know how to be more clear to them and they aren’t listening at all”. What if, in the dark of night, in his madness, he did not see the mother he loves but a horrifying delusional apparition there to harm him and his family; perhaps the act of killing me would finally get him the help he needs, a chance to quiet the voices and terrifying paranoia, and find some peace.
“I have only been afraid of Tom once, his delusions of people coming to harm him, and me not understanding. I never know the right thing to do or say. His brain is screaming at him, voices only he can hear, shouting down any shred of reason that may be left. His despair and fear so great I am afraid he will lash out at anything, anybody nearby, not knowing what he is doing in his insanity. Any suggestions of getting help are met with incredulous sighs and anger. Why don’t I listen, why don’t I understand, I am the one that needs a doctor, I am the one that is in denial. I hide the knives that night.
“We leave Tom alone now. He doesn’t talk anyways, he doesn’t hear us, or if he does he responds with something unrelated and unintelligible. I buy health food and leave it around, hoping he will get some nutrition in him He isolates in his room, sometimes for weeks at a time, not bathing, sitting so long his feet and legs swell up so bad he can barely walk, drinking coffee. He is going mad in the room I had remodeled for him, to keep him safe for as long as I could. I pray he will go into a coma and I can now call and say come get him and help him, he is a danger to himself.
“I go to do the dishes, but they are already done. I don’t remember doing them. I lose track of time, I wait. The wolf at the door will surely come bursting thru any day now; it is almost six months of no meds. One afternoon Tom comes to me, puts his arms around me and says ‘I love you mom.’ I’m still a light in his mind, I’m still there.
“The months go by. I ask myself how much worse can it get, but I already know, much worse. My nightmares turn into terrifying faces coming out of the dark.”
Yesterday he vetoed a bill that would have limited the use of solitary confinement. (As one of the most demonstrably mind-destroying forms of punishment available, it should be banned altogether, everywhere.) Now he is restricting funds for the most abject members of society, the seriously mentally ill. This points not only to Christie’s particular brand of heartlessness, but also to the destructive myopia of too many public officials about the hellscape inhabited by “crazy people.”
A little while ago, I idly clicked on my son Dean’s Facebook page and found the stunning post below. As I told him a bit later, my heart was still pounding. And it still is.
On the surface, this is an account by Dean of his attempted suicide about four years ago. (Our family had lost Kevin, Dean’s younger brother, to suicide in 2005 after his three-year struggle with schizophrenia deepening in to schizoaffective disorder.)
This at least is the surface account—which Dean has never talked about until this morning. On a more profound level, it is an extremely rare glimpse into the soul of a schizophrenia sufferer, written with blazing clarity and candor. In NO ONE CARES ABOUT CRAZY PEOPLE, I narrate that terrible day from Honoree’s and my point of view, as we realize that we have lost phone contact with him, then learn from police that his truck had been found beside Lake George, some thirty miles to the west of us, and then sit helplessly for hours, trying to absorb the possibility that we had lost our remaining cherished son.
I am inexpressibly proud of Dean for giving us this. He was a promising young writer until misfortunes in his life began to multiply, culminating in a psychotic break a few years after Kevin’s death. This essay tells me that Dean is working hard and fearlessly to regain and re-master his gifts. To which I say, Godspeed, my good son.
But the significance of the essay goes well beyond my fatherly pride for Dean. It should be read by anyone who believes that mental-illness victims have lost their humanity; that they no longer are capable of insight or of reaching out to the “normal” world.
And it should be read by sufferers themselves. One of your brothers has held out a lamp to illuminate the richness that remains in you.
“Three years and several months ago: i texted my buddy and boss as my gps led me to the wrong spot. “I’m lost.”
I saw a truck that looked like mine parked beside a trail. I parked there and started walking down the trail. Snakes got startled, several of them, slithering away as i walked past them as though they were frightened by me. As i walked i felt the tedium of daily life weighing on my shoulders.
I came here knowing there was danger only to face it and meet my fate. As the steps drew on and i felt tired bugs started swarming around my head. I had a vision in that moment of me several thousand years ago drunk and staggering and lonely. Death sounded like comfort.
I turned around and walked back as a crossed a small wooden bridge i saw trash in the water and my Eyes started to tear up as it crossed my mind that we are trashing this gift God gave to us. Then a low flying plane flew directly over head as if God was telling me you made your appointment i see you and all is well.
Then i got back in my truck and drove to Lake George. My eyes scanned my surroundings at a red light and they settled on a “no right on red” sign. I gunned the throttle and turned right on red. I pulled into the parking lot, left my wallet and my phone in the truck.
I got out walked to the beach took off my shirt socks and shoes and got in the water. It was July. There were other people in the water. It felt good. I walked out a little ways till i was waist deep and took a plunge. Suddenly i felt this wonderful energy running through my arms and chest as i held my knees to my chest. I was going to turn into a school of fish and swim off into open freedom. It was like i could breathe under water.
But before i took my first breath an off duty new York state trooper pulled me out of the water. My arms opened up wide like i was on the cross myself staring up at the sun as he dragged me out of the water and put me on my back on the beach. I wondered if God could see me. Then i looked down at the water and saw a boat, the Minne Ha Ha. It was as though some competing force was telling me the world is mine haha. Then a helicopter swooped over head. It was like a movie.
The first thing i said to him was, “it’s in the eyes.” His eyes were hazel. Then all these competing arguments about the origins of the world and God flashed before my eyes. My heart beat rapidly in panic. I saw Ireland with its eyes never closing even as europe fell asleep during a card game. This gave me hope that it wasn’t all as bad as it seemed. Then before even a second elapsed I was put on a stretcher and put in an ambulance with two emts with blue eyes and i panicked again.
“All i want to do is rest in peace,” i said to them. “Oh we hear you,” the man said to me. He flicked the lights above me on and off several times. Then they took me to the hospital and i heard birds chirping and saw lights flashing when i blinked my eyes.
Eventually they put me in the psych Ward and i got pissed that i was getting locked up again. 5 guys and i were standing around in a circle. I said “nobody here has any authority.” Then they bowed their heads. They bowed their heads as if the authority was spiritual. Then they all laid hands on me and put me on my bed and shot two needles in my butt. And i said “those shots better kill me.” The medics head jerked as i said this as he plunged the medication home.
Later as i reflected on it i thought to myself, “they pulled me out of the water.” Baptism, evolution, pirates. “They pulled me out of water.” I was baptised into my true spirituality by an off duty new York state trooper. It also symbolizes our journey out of the ocean and onto land. And if i had walked the plank it’s like they threw me a rope to pull me back on board.
And if he hadn’t pulled me out i might have breathed and i might be dead. I don’t even know his name, but i want to thank him.”
In case you’ve been kidding yourself that public care for the mentally ill is snugly enfolded in the bosom of America’s state government systems, and monitored by informed, crackerjack news organizations, take a look at the peculiar string of factoids stumbling forth from Oregon.
The factoids originate in a verifiable event. On Dec. 1, Governor Kate Brown announced her plan to close down the Junction City Mental Health Hospital, which opened with great fanfare just 18 months ago; boasts a 174-patient capacity, and offers employment to 422 people in a community that needs every job it can get.
That, as Dan Rather used to say, is what we think we know at the moment. Beyond this base, information remains sketchy, motivations murky, the announced rationale questionable, and the future of the facility’s patients up in the air, where the futures of such unfortunate human beings generally reside.
The governor herself—a Democrat, by the way, and thought of as generally progressive—has attributed the necessity to, brace yourselves, a tight state budget. Tight budgets are virtually always given as the reason for tapping into funds and facilities for mental health care, which in turn are virtually always the first areas to be tapped in a budget pinch.
But is Oregon really suffering a budget pinch?
Governor Brown pointed to a “projected” $1.7 billion revenue shortfall set against expenses for 2017-19. She intends to narrow this gap partly by raising taxes on cigarettes, liquor, and hospitals (a grouping that one does not often encounter). Yet a “Revenue Outlook” released by Oregon.Gov begins by reporting that “Oregon’s general fund outlook remains stable” https://www.oregon.gov/das/OEA/Documents/revenue.pdf and that revenues “are expected to total $19,526 million in the 2017-19 biennium, an increase of 8.4% percent from the prior period,” although $40 million below the September forecast.
So, again, to paraphrase Donald Trump—“Pinch?—or no pinch?”
Even if the Governor is drawing upon more reliable comparisons than are readily available to an outsider, it seems peculiar, bordering on bizarre, that she would choose the Junction City Mental Health Hospital as a first-round sacrifice.
Junction City opened to great applause and greater hope in March 2015, its features harkening back to the exalted “Moral Treatment” designs of the 19th century. (The cost was either $180 million or $84 million, depending on which Oregon press account you read, a testament to the quality of press scrutiny. As of this writing, no major outlet has done an in-depth examination of the proposed closing or the political dynamics behind it. My own calls and emails to Oregon reporters are as yet unanswered.)
Its rehabilitative amenities include a library, spiritual center, hair salon, fitness rooms, classrooms, a gym, and outdoor quads. Patients can go on outings (after a review process, learn social skills and money management, acquire cooking skills and learn how to call for help.
And in case those humane offerings might strike some taxpayers as a little—oh—cushy for people who are, well, you know; consider this: the alternative to clinical rehabilitation is, typically, jail or prison. These systems, dumping-grounds for an obscene number of afflicted people, add up to a far greater drain on public revenues than does rehabilitation. Oh, and by the way, they tend to be unspeakably barbaric. To the sane and insane alike.
In early May 2015, less than two months after Junction City opened, a public-interest group called Disability Rights Organization (https://droregon.org/bhu/) released a report that found “Oregon prisoners with severe mental illness are routinely tasered, pepper-sprayed, isolated, and denied access to adequate mental health care.” (“Isolated,” by the way, means “placed in solitary confinement,” the single most devastating assault prison guards can levy on a mental-illness sufferer.”)
As I write in NO ONE CARES ABOUT CRAZY PEOPLE, this list of sanctioned atrocities has changed hardly at all from the horrors of Bedlam Asylum more than 700 years ago, save for the technology.
I will continue to monitor the developments surrounding Junction City in the coming days, and the bedrock reasons behind the governor’s decision. Meanwhile, the links below offer a fuller discussion of some of the points I have raised.
I just answered a post by dear friend from college and early-career days. He grew up in Sudbury, Ontario. He’s feeling a little down, like a lot of us, over the election, and expressed a wish to return to his hometown.
I don’t know that I managed to cheer him up, but his message reminded me of a passage from NO ONE CARES ABOUT CRAZY PEOPLE. It involves a night spent in Sudbury as I drove Kevin, then 14, from Vermont across Canada and then south through Michigan to commence his studies at the Interlochen Music Academy. I’m reposting it below. If not exactly a cheerer-upper, it at least is a reminder of moments of beauty that appear from nowhere, conjured by the fingers of a gifted child and his guitar. This was before Kevin’s fatal onset of schizo-affective disorder:
“That September, I drove Kevin the nine hundred miles to Interlochen. It was a memorable ride.
“We chose a route that took us north to Montreal, then westward on Highway 17 for six hundred miles, skirting Ottawa and then the vast and pristine Algonquin Provincial Park, its primitive interior saturated with lakes and moose. We ate hamburgers at a log-built restaurant and gift shop somewhere along the route, and it became our traditional stopping-place on future trips. Traditions were important to both boys, but especially Kevin. We stopped for the night in a motel in Sudbury, Ontario. At Sault Ste. Marie, we turned south into Michigan along Interstate 75. We crossed the Straits of Mackinac, linking Lakes Michigan and Huron, on the majestic suspended arc of the Mackinac Bridge that stretched five miles.
“Kevin was upbeat during the long drive, but he admitted to me that he was worried about meeting new people at the arts academy. For one thing, he said, he didn’t know any good jokes. I told him that jokes could be over-rated, and the best way to make new friends was to ask them a lot of questions about themselves. This went for girls too, I added. Girls especially.
“In our motel room in Sudbury, Ontario, I was unpacking toiletries from my suitcase. Kevin was sitting behind me on one of the twin beds. I heard acoustic guitar notes, and turned around.
“The lamplight brought out the gold in Kevin’s hair, and he was in his usual playing position, bent forward a little, head down, the sole of one messy sneaker planted on the arch of the other.
“The piece was short, but lyric, and haunting, like a medieval ballad, and as it went on I stopped unpacking and sat down on the bed beside Kevin and listened. When he had finished, and when quotidian sounds—traffic horns, voices in the hall, TV sounds in other rooms—had resumed their noise, I asked Kevin where he’d learned it and how long it had taken him to memorize it. He shrugged and said that he’d made it up as he went along. He was just doing some finger exercises.
“Some weeks later, walking with him around the Interlochen campus during a visit, I brought it up again. I asked my son if he could reconstruct that piece from memory. He gave an absent shake of his head; his attention, at that moment, was on a pretty girl riding a bicycle in and out of the sunlight. A temporary, beautiful, golden thing had passed through that motel room in Ontario that evening, and then vanished, a presence to be experienced only once, and briefly, and then never again.”