Clouds Followed His Every Move

 

Clouds Followed His Every Move     

All around him, there are spies. Some of them are detached observers, like glass surfaces and still pools; others, such as coats in store windows, are prejudiced witnesses, lynchers at heart; others, again (running water, storms), are hysterical to the point of insanity, have a distorted opinion of him, and grotesquely misinterpret his actions.     Nabokov,Symbols and Signs

In 1980 my brother moved from Vermont to live with us in St. Paul after a falling out with co-workers. David believed they were drug dealers and plotting to harm him. Six weeks later he was on the street under hot summer skies. I put him there. He was twenty four years old. He could have become one of the lost chronic homeless, like Sam, my friend's brother, who sank into the muck of life on the street and disappeared. 

David’s childhood was hard. He was born with developmental troubles. He may have been hit by a flu virus during gestation. No-one will ever know. Our parents took him to a special school in the next town over where he got extra help and also worked with speech therapists so he could speak better. 

Mom said: “He knows what to say but the muscles in his mouth don’t work right.” His eyes were shaped a little differently from the rest of ours. He was clumsy and progressed slowly in school.

Boyhood memories, like rapidly dispersing streaks of cirrus. Fishing on the Otter Creek; seldom caught a thing. We both were soaked the time he slipped down the bank and I pulled him out. Running in the woods. Sledding down the closed street. Led Zeppelin. Raking leaves. Banging on an old piano bought with money from hawking cans of fish worms on the roadside. Selling greeting cards door to door. Walking to the library. A drive to see cousins in Jacksonville. The Who. Mowing lawns. Freaking out Scout-mates at summer camp with a hypnotic trance, wandering, eyes closed and arms outstretched. Shoveling snow. Halloweens, always skipping the old Yakonovich witch’s house. Following the Red Sox and the Raiders. Building stick forts and damming the stream in the woods. Black Sabbath. Hoeing tomatoes, beans, cukes, squash, corn and pumpkins.The clothing our mother made and remade. Watching the smoke of a forest fire on East Mountain. Visiting Grandma on the dairy farm in Cabot. The Doors. Collecting empty soda bottles for 2 cent deposits; trading for Coke and potato chips. Sunday school and church weekly. Two or three black and white TV channels. Sent to bed at 8 p.m.. Soccer. Six kids, all closely supervised. 

I was mean to him. “Hurry up, retard!” “Come on, you retard, spit it out!”  More mean insults like that.

I left for college when David was in junior high. He eventually graduated from high school. With the assistance of State vocational specialists he got a job cutting meat in Norwich University’s kitchen. He did very well there for a few years, eventually working without a job coach. He lived at home and bought a yellow VW bug to drive the fifteen miles to work. He emulated mother’s depression-era frugality and saved most of his earnings. Working also earned him a deserved degree of respectability.

But David became absolutely terrified of going to work; the fear was genuine, but no-one knew if the threat was real. Talking with David, Karen, and my parents, we agreed that he should come to live with us, find a job and establish himself here. The Twin Cities were safe and had a much bigger job market. St. Paul was a place where David could restart and succeed. Aunt Elizabeth and Uncle Herschel were here and Karen’s sisters Lu-Anne and Nancy had also recently moved to Minnesota. He flew here on his own, his first trip by air.

Karen and I lived in a rented house. It was small but we had an extra bedroom. David was glad to be with us, relieved to be far from the cleaver-wielding pot-smokers. We never told the landlord that he had moved in.Tenants risk fast eviction if they invite a needy brother or a friend between jobs, or a buddy just out of treatment to move in with them, even just temporarily. 

Karen and I went to work five or six days a week at St. Paul Fire and Marine and at Legal Aid.. 

David began his job hunt at once. In 1980 the daily newspapers carried page after page of classified job ads. Dozens in the food service field. He called. He knocked on doors. He called again. He knocked on more doors. There was no job. 

David commented, not with great agitation, just remarked, that he’d seen a helicopter watching him from the sky. In Vermont, copters were rare, but not here with news, police and medical flights. So I assured him that they were likely just medical flights and he didn’t have to worry. Weird though. When you grow up with your brother who is different, you can see such wild things as just an extension of his life of challenges. You can rationalize that such suspicions stretched the bounds of reality just a little. After all, 30-something guys on a college campus probably were using drugs and might threaten an agitated co-worker who won’t shut up about the pot smoke. 

David continued his job hunt. 

I came home one day. David was gone, the door was locked and the house was filling with clouds of smoke. On the glowing electric stove, the Bakelite handle was burning off our tea kettle. 

When he returned, I set my hands upon my hips, and in my judgmental big brother tone, demanded: “What the hell were you thinking?” 

Of course he had no answer but downcast eyes and: “Sorry.”

Karen and I were set to leave to visit her sister in Tucson in a few days. The near catastrophe angered and scared us.

“David, you have to stay someplace else while we are gone. You’ve got the money.”

David wasn’t mad, he didn’t argue; maybe his frame of mind was just stunned. Stunned by living in a city, by the frustration of the failed job search, by the sight of the charred and discolored kettle, stunned by the thought of being on his own for the first time in his life, his future in a fog. He did not object. He did not ask for help. He found the still-affordable Midway Motel on Snelling Avenue near the Fairgrounds. We flew to Tucson for a week. 

We returned and I called the motel switchboard. He had checked out days ago. They had no idea where he went. The next day I received a call from the University of Minnesota Hospital where David had been for a few days. Between David and the staff I learned that he’d felt terribly sick and he’d wandered in and out of ERs before the U admitted him. In sum: Assess for congenital multiple sclerosis and/or cerebral palsy. 

And schizophrenia.

I still feel the hand-slap to my forehead. Of course. The helicopters. The drug dealers. The strange affect. The burned tea kettle. Schizophrenia. No job offers. Schizophrenia. The terror. Of course.

Cold still drowns my heart as I remember how I made David homeless. It wrenches my spirit to think of him alone in the motel room - I abandoned my brother. My sense that I am a moral person still shrinks when I hear the word “retard” and imagine him trying to expl;ain himself at the E.R..  And now, only four decades later, has it dawned on me: what a brave and strong and in his own way, tolerant,brother.

Paranoia. We rapidly agreed, David included, that he should go back to Vermont. Our parents were in their late 50s and early 60s and still in the big family home they’d bought in 1968. Dad, recently fired for crossing the governor’s business pals, was an independent consulting forester and church leader. Mom was a substitute high school teacher, volunteer at the Historical Society and the time keeper for the high school soccer team. They had a home, time, commitment, connections and resources. There were two of them. And they were his parents. It's what parents do. Usually.  When parents can. So David took his second airplane trip back east.

Illogical. David lived at home in Barre, in a group home, a supervised-living apartment in Montpelier, in a foster home with former state hospital staff. Each new home was arranged by social services and checked out by Mom and Dad. He had one stay at Waterbury State hospital. David raved and moved with great physical agitation behind depressing locked doors there when I visited. I’ve seen such utter madness twice: my brother and a prisoner-client after a balloon of smuggled angel dust burst in his stomach. 

Incommunicative. Montpelier, where he lived in apartments for several years, is a very small city and his neighbors ignored or accepted his peculiarities.They didn’t object to his wanderings, his suspicious eyes, his self-interrogations, his misaligned buttons and loose shirt tails and the endless refills of coffee consumed on the Ben & Jerry’s patio. The police and merchants all knew him. If he were an inarticulate, peculiar, disheveled and weird-acting Black man, would he have found such tolerance? 

David had a home at Brownway, a small assisted living home at the edge of Enosburg Falls where he lived for two decades. His room looked out over the Missisquoi River valley towards the foothills of Jay Peak. He may have glanced out his window from time to time but I think he never appreciated the beauty of Vermont falls, winters, springs or summers that passed over him, month after month, year after year.

David moved back to Vermont when the State was trying to end mass institutionalization. Vermont had a small population and people working to establish an imperfect but robust community care system. His Legal Aid lawyer, Jack, was the leading advocate for freedom and protection for people with mental illness. Mom and Dad joined the National Alliance on Mental Illness (NAMI’s slogan: “You Are Not Alone”), and became leading advocates for protection and freedom for David and others with mental illness. 

I think about what David got and what he missed early in his experience of mental illness.  David did not see people in Vermont holding “Help - God Bless” cardboard signs on street corners, getting enough money to feed their demons but never enough to improve their lives. He did not find homeless encampments filled with the “free” ill and the “free” addicted, where he could have sheltered without expectations, obligations or protection. There were no kind people with lake cabins and  empty backyards campaigning to preserve encampments in other people’s neighborhoods. There was no fentanyl. What he got was a combination of family and community commitment to individual care and control that he could not provide for himself.

When our parents aged and were no longer able to oversee David’s life and care, our brother Jon and his family, Deb, Briana and Skyler, took over. Jon drove 80 miles to see David every couple weeks. I visited every 12 to 24 months.

David received a full range of mental health, vocational, medical, legal and social services. Early on, he tried working a data entry job but his illness derailed that effort. Because he had worked in the college kitchen, he got a small bump above the minimum Social Security benefits ($314 per month in 1984, $914 now). A guardianship order gave the family responsibility to decide where he lived and the power to handle the little money allowed for his personal needs. Vermont tax payers kept him supervised, housed, treated and safe. Was it half a million dollars? A million? Even my right-leaning brothers appreciate that public spending. 

One time he was given a new antipsychotic drug and he regained his lucidity!

My mother was so excited: “He can actually talk to us without all that crazy stuff!” 

Two days without that crazy stuff!  But the drug killed his white blood cells, threatening death by infection and it had to be stopped. The old medications that barely kept him from the worst, most active psychosis did terrible things to his mental and physical health. Tardive dyskinesia (involuntary body movements). Weight gain. Lethargy. Inattention.The death of motivation. 

Our worst scare came when David tried to escape to Canada. On foot. He was found and brought back after two days. He had an obsession with guns, but never acted on it.

Confusion. The madness grew much worse. David’s judgment, understanding, ability to relate to others, his capacity to communicate, his grasp on the real, went up in smoke like a kettle left on a hot stove. David’s ability or interest in reading or drawing or doing much of anything declined. He stopped listening to music and watching DVDs. I never saw him interact with another resident. He hardly ever seemed happy. 

David sat with me for a cup of coffee in the Brownway lunchroom, his face mixing fear, resentment and distrust, his eyes flicking up for a second from the linoleum to look in my eyes. He often said in a strained, barely intelligible voice: “Go away, don’t want to talk to you!” Sometimes, he’d relax a bit and tolerate my visits for thirty minutes and look at photos of my kids. I am glad that they came with me for a few visits.  My daughter became a better lawyer and my son a better beat cop for having directly experienced his illness.

It became much harder to understand him as both his mouth muscles and his mind no longer “worked right.” What I could understand was usually extremely irrational. For a decade or more, he refused to leave the facility for a family visit or a walk around the grounds. Not for an ice cream cone, just two minutes away by car. For years he never left except by ambulance - falls, bowels kinked and obstructed and other troubles. 

In his forty two years with an unmoored mind David never had one encounter with the criminal law system. He was never violent. He never got involved with drugs or alcohol.  Never saw him with a cigarette. He wasn’t very pleasant but he did not mistreat the women who cared for him at Brownway.

Our parents were strict with their children and remained strict with David. He was so very ill but he somehow conformed to a standard of good behavior. I think his upbringing and some consciousness of expectations helped keep him away from drugs and alcohol and other troubles. An Italian study says authoritative (not authoritarian) parents give their children the best base to survive severe and persistent mental illness. 

Not long ago Brownway staff said his needs were getting beyond their strictly licensed capacity for care. Moving would traumatize David. Keeping him would endanger their operations. A new doctor was found to give him closer attention and an increase in his medications. His condition worsened. Staff said they could only care for him with extra help and that he might qualify for hospice care under a state program for people with disabilities. 

We thought that this was a rational and convenient move - but, we also said to each other, “David isn’t dying.” They got approval to bring in a part-time nurse for added help.

A judge’s approval is required for hospice services and for a DNR order for a person under guardianship. Two Zoom hearings and testimony from four siblings, a guardian and the facility’s nurse ended with the judge’s approval of our requests and praise for exemplary family support. David could not participate.The praise rang a little false to me as our best efforts were not always there, the results of our good intentions were never enough.  The order was what we all reluctantly desired. 

And the nurse testified: “We’ve seen patients in David’s condition live from three to six months.” 

David died four months later. A culmination of sadness and the end of extreme suffering.

In a final act of sober responsibility, Jon, David’s guardian, spoke to the medical examiner and asked her to put “complications of cerebral palsy” on the death certificate rather than cite a recent fall. That was true and also, a death by fall investigation would yield no benefit and divert Brownway resources from care needed to keep stable the other women and men who also had found their final home. 

I hoped for years that David had an interesting inner life, even if it was all imaginary, as his outward life was so constricted, socially, mentally, emotionally and physically. He did, over the years, tell us, when he could, stories about his adventures. His girlfriends, their babies, his travels, his new jobs and his need to escape to Canada. His oft-repeated favored phrase in those stories was an imaginative riff: “Quite right, quite right. Ha ha ha.” All insanity. For a while, he followed the TV news and found himself enmeshed in the troubles of the day. He confessed to conspiring to get the weapons that shot John Lennon and Ronald Reagan. As with the mad son Nabokov wrote about, David’s was a referential mania: “Everything is a cipher and of everything he is the theme.” 

But I think David’s was an increasingly dreary inner life that gave him no pleasure and allowed no escape. It was in no way interesting, as the story-teller's life might be.  His stories were mainly emergency bulletins of personal catastrophe  But still, even towards the end, perhaps, yes I think so, unless I grotesquely misinterpret him, there is evidence, in his fantastic stories of influence, in his imagined family, and even in his tenacious hold on his crowded room at Brownway, evidence that I choose to see as proof that David still kept somehow, deep buried, but still living, some clouded sense of being home.

-0-

Jay Wilkinson, November 2023

David, Jay, Jon at family home, Barre, Vt. - 1990?

David Walker Wilkinson, 1956-2022, at Brownway in 2007, photo by my daughter, Sara C. Wilkinson

Audience: Not sure about audience outside of family but I may submit to Ntl Alliance on Mental Illness, though they already “get it.” Brownway staff?  Maybe get it to those who favor abstract freedom for people with mental illness and other debilitating problems? People concerned with the problems of homeless people? David’s former lawyer?  Brownway staff? Op Ed?

Craft: This is adapted from a remembrance I wrote after David’s death. I have difficulty leaving advocacy and didactics behind when I write essays and originally ended with several speculations about why David avoided homelessness. I went back to braid those ideas into the text in less argumentative forms and also sought to make it more personal. I don’t spend a lot of time thinking through the emotional impacts of my life and I tend towards intellectualism in my prose, so those impacts are hard to get down on paper satisfactorily. I added the epigraph late and may try to work with that some more.

Q: The time frame is not always: this happened and this happened and that happened; does that confuse the reader?  I wonder if the informal style describing our boyhoods starting at the end of page 1 works, given the somewhat more formal style of the remainder.  I want a stronger ending. I realize the final sentence is very convoluted - it reflects my thinking.Better title? I had When David Was Homeless until riffing off Nabokov. Have you questions whose answers might make it more personal?  Thanks. 

Excerpt from Nabokov:  Symbols and Signs The New Yorker, May 15, 1948

He excludes real people from the conspiracy, because he considers himself to be so much more intelligent than other men. Phenomenal nature shadows him wherever he goes. Clouds in the staring sky transmit to each other, by means of slow signs, incredibly detailed information regarding him. His in-most thoughts are discussed at nightfall, in manual alphabet, by darkly gesticulating trees. Pebbles or stains or sun flecks form patterns representing, in some awful way, messages that he must intercept. All around him, there are spies. Some of them are detached observers, like glass surfaces and still pools; others, such as coats in store windows, are prejudiced witnesses, lynchers at heart; others, again (running water, storms), are hysterical to the point of insanity, have a distorted opinion of him, and grotesquely misinterpret his actions. Everything is a cipher and of everything he is the theme. He must be always on his guard and devote every minute and module of life to the decoding of the undulation of things. The very air he exhales is indexed and filed away. If only the interest he provokes were limited to his immediate surroundings, but, alas, it is not! With distance, the torrents of wild scandal increase in volume and volubility. The silhouettes of his blood corpuscles, magnified a million times, flit over vast plains; and still farther away, great mountains of unbearable solidity and height sum up, in terms of granite and groaning firs, the ultimate truth of his being.

My Brother Knows Nabokov

When with close listening

we draw meaning

from his disarticulation

his constricted life expands

and rolls along in curves and cuts 

as alluvial streams trace through

the silting out 

of memories and plans,

of Bond movies watched on VHS and DVD, 

the nightly news of ’76, his two flights west

and odd Alice Cooper lyrics. 

Broken twigs and latticed leaves tumble loose 

pressured by his certain reveries

of hard-edged, dark and unbounded efficacy. 

Today:  His guilty premonition 

of the Quebec oil train explosion, 

a smoldering conspiracy, 

just across the border.

This tragedy arises, not 

from a loss of meaning,

but in his raging 

floods of consequence.

Jay Wilkinson, 2009