Farewell, dear friend

Kimball July 2012

An old friend of mine died last week, a man I hadn’t seen in 25 years until we reconnected briefly two summers ago.

Our lives went in different directions after a tumultuous relationship in my early twenties, though I’ve thought of him many times through the years.  I didn’t anticipate how deeply I’d feel this loss, as I knew he was ill, had known for weeks, in fact, that he was dying.

I was living in the city when I met him, sharing a tiny apartment above a travel agency with a sorority sister from college.  Our place had four cramped rooms, little natural light and virtually no closet space.  But at the corner of Clark Street and Belden Avenue, we were in the heart of Lincoln Park, and that’s what mattered when we were 23.

It didn’t take us long to discover Neo, the new wave, post-punk dance club just a block north on Clark, accessed through a graffiti-covered alley, a scarred metal door, and a bouncer with a couple of safety pins through his lip.

It fast became our go-to venue, close enough that we could run up the street during freezing Chicago winters without coats to worry about losing once we’d made it inside.  The music thrummed, pulsing and frenetic, driving the dancers who pitched and surged across the sunken dance floor.  The eight-foot aquarium behind the bar cast an undulating glow on the eclectic mix of habitués, patrons of the club “serving Chicago’s underground since 1979.”  We were thrilled to be a part of it.

A fight erupted one Friday night on the sidewalk in front of the club, between a guy I’d been talking to and another man, both drunk and throwing ill-timed punches as I stood by uselessly, shrieking at them to stop.

Kimball appeared from the alley then, a Neo regular I recognized from the club but had never met or spoken to.  A large man, massive, really, he moved with surprising, graceful fluidity, breaking up the flailing tussle without so much as raising his voice.  He picked a leather jacket up from the ground where it had been thrown, and gently handed it to my acquaintance, who took off down the sidewalk in humiliated rage.

I took off with Kimball.  We were together for two and a half years.

We couldn’t have been more different, he a self-described “fat Jewish kid from Skokie” with barely a high school education and no family of consequence, a Tai Chi master who wore the full-length robe of his discipline wherever he went.  He worked, at times, as a bouncer, but was often unemployed.  That didn’t matter, though: he was an artist, a painter who conjured mystical tableaus reminiscent of Salvador Dali or Hieronymous Bosch; a reader of Kafka and Ayn Rand and Mad magazine.  He was a storyteller who captivated, a listener whose attention made you believe you were the only person alive who mattered.

Everywhere we went somebody knew him, or wanted to, or pretended to.  He had a mystique, a charisma which attracted men and women alike.  Everyone wanted a piece of Kimball, had a story to tell of his exploits, his outrageousness, his larger-than-life personhood.

And I was his girlfriend, a diminutive blond from the North Shore with an expensive liberal arts degree, a new white Mustang and a 9-to-5 job at a dental association.  Insecure but hiding it, I was often called beautiful but never believed it, a girl of “privilege” desperate to claim my own place, to escape the repressive shadow of a stunning, accomplished mother who had and did it all.

Kimball offered that escape.  I didn’t realize then or care that I was simply trading one shadow for another.

It was doomed, of course.  The bond we’d fashioned from our incongruous lives was not destined to withstand the differences which drew us so compellingly to one another.  I don’t think either of us ever truly considered relinquishing enough of ourselves to accommodate the other’s expectations, our unformed yet firmly ingrained perceptions of what our real lives would be.  When it ended, undramatically, I felt more relief than sorrow.  But I never forgot him.  He was part of me, for a time, back then when I was young.

I recall one summer afternoon, near the end, when Kimball and I waited out a sudden, violent thunderstorm, huddled together inside my car as the rain pounded the roof and sluiced across the windshield, blurring the world beyond, sheltering us, for a few sacred moments, from all that waited on the other side.  Elvis Costello was crooning mournfully on the radio, and I remember the sense of melancholy I felt then, the certainty of impending loss.  Kimball held my hand and sang softly out of tune:  Alison, I know this world is killing you.  Oh, Alison, my aim is true.

He comes back to me now in snatches of memory, his broad face thrown back in laughter, his farcical antics with my roommate’s cat, his confidence, worn like armor, disguising his own scars, the detritus of a broken childhood.

And with him comes a yearning for those impetuous, unencumbered days when I was young, and still believed in limitless possibility, before I grew up and adulthood fully claimed me.  Those days when my parents were still alive, the home base I could run to; before I understood the mercurial nature of happiness, when inconsolable loss was as yet unimaginable, when I was still insulated by the arrogant gullibility of youth.

We saw each other two years ago at a reunion of Neo’s old guard, a gathering of regulars from back in the day I surprised myself by attending on a hot summer night in July.  We told each other we hadn’t changed, which in his case was true.  He was still robust, despite the disease which was slowly, inexorably taking him.

He reminded me of our attendance one Sunday morning at the church of my childhood, which I recall as a sort of last-ditch effort to find some spiritual middle ground on which we could build a future.  My mother was horrified, embarrassed by her daughter’s choice of boyfriends, and bringing him to church, no less.  Although he’d left his Tai Chi robe at home, Kimball’s blue hair was probably too much for her to publicly bear.

But Kimball was intrigued by the service, following the liturgy so familiar to me but utterly foreign to him.  He was touched by the unanticipated sincerity of those bourgeois suburbanites who welcomed him, and asked him to come back.

He told me that was the beginning, the spark that eventually brought him to God, and to a community which embraced him, and became his family.  I smile at the irony, he donning the comforting veil of faith as I suffered the loss of it, when my prayers for my son went unanswered, when I doubted so bitterly the belief I’d never had reason, before, to question.  I’m comforted now, knowing he had a doctrine meaningful to him, which, in a small way, I helped him find.

He was larger than life, larger than my life could hold.  Yet my memories of him evoke a simpler, less complicated time, an unguarded time.  We experienced that together, before the world crashed in, before I learned what I was capable of, what I could hold, when I needed to.

Farewell, dear friend.

Farewell.

Totally Unacceptable

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A few weeks back my son had a follow-up appointment with the new psychiatrist he visited in May to consider medication changes that may help curb his erratic behavior.

I participated by phone this time, unable to attend the appointment near my son’s residence in Wisconsin.  I was anxious to hear the doctor’s opinion on the slight improvement Daniel’s shown in the bolting, aggression and beverage-stealing that so dramatically impact his life right now.

His group home director was a few minutes late in calling to patch me into the appointment, and I was beginning to worry that I had the time wrong when the phone rang in my hand.

“We had a little disturbance,” Steve informed me, his usual cool slightly ruffled.  “But all is fine now.”  Apparently, Daniel had demonstrated first-hand one of the behaviors we are trying to control, grabbing the McDonald’s coffee cup from atop the doctor’s desk the moment he entered his office.  It took a few minutes to restore order before Steve called me and the appointment got underway.

The doctor indicated cautious optimism that medication may help reduce Daniel’s impulsivity, and we agreed to wait another month to see how things progressed.

“I can’t guarantee anything, of course,” he went on, echoing the prognosis given by countless other doctors, therapists and behaviorists over the years.  “This may be a behavior he always exhibits.  We’ll just have to wait and see.”

What else is new? I wanted to ask, but instead thanked him, joking that at least he got to witness one of the very behaviors for which we were consulting him.  He didn’t reply, merely repeating that Steve should set up another appointment for six weeks hence.

I got the full scoop the next day.

“What really went down with the doctor’s coffee?” I asked Steve eagerly, reaching him by phone the following afternoon.

“Well, he wasn’t what you’d call pleased,” Steve replied.  Daniel had lunged straight for the doctor’s cup, wheeled around and began gulping, the coffee splashing across desk, chair and rug in the process.

Steve couldn’t help chuckling as he described the psychiatrist’s outrage that a patient under his care for stealing beverages had had the temerity to steal his own, despite Steve’s warning that the coffee, in full view on the desk, was at risk.

“These doctors need to see what it’s really like sometimes,” Steve opined, rather gleefully.  “It’s good for them to get a taste of the problems they’re treating.”

“Oh, man!  What did the doctor say?” I asked, my mortification at Daniel’s poor behavior vying shamefully with relief that I wasn’t present for the fall-out.

“Well, he jumped up, and sort of yelled, ‘This is totally unacceptable!  This is totally unacceptable!’”  Steve described how he’d immediately intervened, retrieving the cup, now empty, while his aide went in search of paper towels to wipe up the spills, which, mercifully, had avoided the doctor’s open laptop.

“I mean, I warned him,” Steve continued.  “He knew the drink obsession is one of Dan’s main issues, so it shouldn’t have come as a great surprise.”

“Oh, for God’s sake,” I replied, my initial embarrassment on Daniel’s behalf turning swiftly to anger.  “‘Totally unacceptable’?  Does he think we’re brining Daniel for treatment just for kicks?  That’s like a pediatrician being pissed when a kid cries while getting a vaccination.  What an idiot!”

Steve agreed, while acknowledging that he’s had good results with this doctor in the past, that his “desk-side” manner didn’t necessarily match his competence as a psychiatrist.

“Doesn’t bother me a bit,” Steve went on.  “It doesn’t hurt for him to come down from his ivory tower now and then and see what his patients are really dealing with.”

But it bothered me a bit.  Quite a bit, actually.  I couldn’t get the doctor’s choice of words out of my head.

“Totally unacceptable.”

Oh, really?  You’re coming a little late to the party, doc.

Because I know from “totally unacceptable.”

“Totally unacceptable” is the dismal care my state provides its most vulnerable citizens, making it necessary for my son to live an hour and a half away from the people who love him.

“Totally unacceptable” is that Daniel’s autism is so pervasive he needs 24-hour care, his every action monitored and guided by caregivers.

“Totally unacceptable” is his struggle just to make his needs known, his frustration at our inability to understand him compounded daily for 22 years.

“Totally unacceptable” is his not being able to hang with his father’s 10-year-old twins, coaching his little bother’s baseball team, or rooting for his sister’s cheerleading squad; “totally unacceptable” is his absence when his big sister received her Master’s degree in June.

“Totally unacceptable” is his zero chance of getting married, raising children or finding fulfillment in a career of his choosing, living in a restricted, sheltered environment rather than pursuing life independently, making his own decisions, earning his own victories and learning to heal his heartbreaks.

“Totally unacceptable” is that my son’s quality of life is dictated by a disorder bestowed through no fault of his own, that his greatest joy these days is being allowed to select his own soda from a gas station mini mart when I visit him on the weekend.

“Totally unacceptable” is the fact that despite my profound love for him, I cannot make him well, cannot erase the effects of autism which have cost him in every way imaginable.

“Totally unacceptable” is that my young, handsome, loving son needs a psychiatrist at all, that this disorder will make him forever dependent on others, including doctors whose years of schooling don’t mean they have a clue about the reality of their patients’ lives.

So are we clear, doctor?  I’ve got the “totally unacceptable” thing covered.

Well.

Okay, then.

The other day I was reading a quote to my husband, attributed to a nationally known motivational speaker.  I scoffed at his simplistic approach to “acceptance”:  “Change the changeable, accept the unchangeable, and remove yourself from the unacceptable.”

“Another fool,” I remarked scornfully.  “‘Remove yourself’?  There are some unacceptables that you can’t just remove yourself from.”

“Well,” my husband gently countered, “he probably means that that is what we have to strive for.  We have to try to let go, to not let those things keep hurting us.”

As occasionally happens, my husband was right.  Of course he was.  But I still have a ways to go in this regard.  Incidents like this doctor’s priggish reaction set me back even after years of struggle coming to terms with Daniel’s disability, to accept that which, to me, is unacceptable.

We’ll keep trying to find whatever may help Daniel control his behavior, and live his fullest life possible.  And I’ll keep trying to reconcile the disparity at war in my own head:  that while I find the circumstances of Daniel’s life unacceptable, I accept him unconditionally.  I can’t imagine my life without him.

Maybe I’ll participate by phone again, though, next time my son has an appointment with his psychiatrist.

Face to face, I might do something unacceptable.