@notWWJDjswgc: A Remnant Remains: Remembering Boston’s AIDS Care Project, The Home Visit Program - Part 1

This is the fourth in a series of posts @notWWJD that testify to the legacy of the Boston public health clinic Pathways to Wellness. Offering free and low-cost acupuncture and herbal medicine on a sliding scale that made certain no one was turned away for inability to pay, Pathways to Wellness began in 1989 as the AIDS Care Project (ACP). Twenty-five years later a series of unfortunate circumstances forced the clinic to close, but as Boston’s South End News proclaimed in an October 2014 headline, “Despite Closing its Doors, Pathways Continues to Heal.” This is possible in part because the original AIDS Care Project will likely live on in Diaspora as a series of hospital satellite clinics and home visit programs after Pathways’ bricks and mortar are gone. It’s an important legacy to preserve: in 1998 the AIDS Action Committee of Massachusetts recognized ACP’s work by bestowing on it the Committee’s only award voted on by the members of the HIV/AIDS community themselves. As I testified in the first post of this series concerning my own time at ACP from 1993-1999, no place—and no community—taught me more of what it means to get out of your own way so God can use you. The second post remembered ACP’s main clinic; the third moved on to the Diaspora of ACP’s hospital satellite clinics, a few of which may survive Pathways’ closing. This post recalls lessons learned from the remnant that will remain, ACP’s home visit program, as I remember it in the mid 1990s.

******

Home visits were like a virtual reality rendition of taking the pulse, walking with my whole body into a patient’s life-stream, laid open and vulnerable, not necessarily because that’s what they wanted, but out of medical necessity. None of these people were opening up their home as they would have wanted it revealed, not showing off their life at its best, but as it was, their houses, their apartments a reflection of themselves, a home in midstream, caught in a cross-current, a life in eddy: what they once were, the accommodations illness had required and those they had refused to make swirling together, one chasing the other, poised over the waterfall of an uncertain future. Both of us wished I didn’t need to be there, not now, not like this, but there I was. I tried to enter softly. You cannot impose yourself on a house, you cannot inflict yourself on a pulse; you have to let your Self go, hand your Self to your host—just as they are—and say: use me.

******

The West Indian woman, husband gone, children taken, who still cooks to feed an army; every afternoon I arrive to pots boiling, a spicy steam from the stove.  The rich aroma of something that smells too good to be only rice and beans spills down the stairwell to greet me, slipping out the front door into Roxbury’s abandoned spaces.

******

A graffitied entranceway in Mattapan—tiles tagged, condoms, hypodermics kicked to the corner—but I open an apartment door on the third floor and step into an oasis: shiny hardwood floors, freshly painted walls so green I can feel the heat of the Caribbean, my eyes taking on a new sense, the ability to actually taste the tropics, to drink it in. Everything is immaculate, even the bedroom I was told to go to on my own once I arrived, every door open, unlocked, leading me to the man in the inner room with the curtains closed, shrouded in half-light, too ill to stand. An aged feline comes in during the treatment and sneaks into my bag on the floor, pulling out a packet of detox-tea to play with; catnip calms cravings, but even this sachet’s small amount restores this cat to a kitten. 

I consider leaving a note, a caution about kitty litter and toxoplasmosis, but this house is beyond such warnings: I won’t be visiting for long, the pulse already slipping away, passing out of the body and onto the bed to find some other rest. 

A week or two later one of my hospital patients passes away the night before a scheduled visit and so I’m able to come early through the grit of the hall into the green apartment, surreal like a movie set. While I am there the anonymous wife who had called the main clinic requesting my services comes home during her lunch hour to check on her husband, my patient. 

She’s startled to find that I am there early. 

I recognize her: a receptionist at one of the hospitals I visit. 

A few months later he is gone and she is there at the main clinic to start her own treatments. 

Taking her wrist I gently tell her how to avoid toxoplasmosis, and it’s understood I’m referring to her husband’s cat—the aging feline she had opened the door to find playing with teabags as if it had found a new lease on life—but in the open space behind the rice paper screen and the electric buzz of our main clinic's hectic hallowed halls we do not mention her husband.  We don’t need to: I can feel him—and the loss of him, and all that he left behind—still inside her, riding the wave of her pulse, carried in the beat of her heart.

******

A four floor nineteenth-century brownstone across from the Cambridge Courthouse, French windows overlooking a backyard garden completely closed off from the street, a vintage bicycle propped up on the balustrade like a bear on hind legs.

A man propped up in his bed, square in the center of what was once a dining room, all other furniture pushed to the sides, scattered antiques making what was once meticulous look like inventory, Lilliputians fleeing from the fallen Gulliver, stranded in his travels, bicycle-bear abandoned, pinned by pains in his legs that preceded diagnosis, the quickness with which he was crippled causing him to consent to a drawing of blood, a test that traded one suspicion for a host of uncertainties: a lover both left and lingering, a physical presence that wandered like a ghost floors to which the man in the bed could no longer aspire—an absence accented by a creak on the stairs, a closing door in the distance that punctuates my visit. 

A man propped up in his bed despite a viral load as low as his basement and a T-cell count that remained top floor, both numbers less reassuring than a matter of mystery. 

Low viral load, high T-count: why then the severity of symptoms? His neuropathy could not have been caused nor even aggravated, as they so often are, by anti-HIV drugs he had never taken, but which his new doctor, the one that came with his diagnosis, had now newly prescribed—foreign sounding pharmaceutical names he had never heard of, before known only as a euphemism uttered by less fortunate friends: the cocktail. 

I set aside my notes, sat beside him, took his wrist, closed my eyes, everything silent but the whoosh of blood around me, swirling, neither forward nor back, his pulse slapping my fingers in place where they stood: a house literally frozen in fear.

Day by day, week by week, month by month we made our way out of a New England fall into New England winter, and finally the thaw when blood began to flow, the pulse to pulse, the sound of music: every visit this client asked me to bring a new recording to play during his next treatment, something he hadn’t heard before, a favorite I was willing to share. I’d make tapes I could leave behind if he liked them: Rachmaninoff’s Vespers, Ravel’s rare string quartet, another by Debussy, Frederica von Stade singing Chants D’Auvergne.  Beautiful music, divine, turning the cassette over as he did the same, second side, burning moxa a meditation down the length of his spine as songs—some introduced to me by other patients, in other homes—connected him to a community unseen, the sympathy of strangers, an assembly awaiting his debut in steps that measured his progress: from the bed to the chair, then the door, finally to the bathroom, his bedpan abandoned. The week he was able to straddle his stationary bike was a milestone, its weights and counters a new means by which to measure how far we had come and the distance that remained to our goal; when he greeted me with the news that he had taken the stairs down to the garden I looked outside to see if his bear was out of hibernation, back on all fours: there it was, the bicycle on the balustrade cocked, confident on its kickstand, ready to go, pulse pounding at the door, flowers in bloom.

******

Another brownstone, a basement apartment in Boston’s South End, furniture pressed, piled and stacked, forcing me to find my way like a rat in a maze as the mounting pressure of a life compressed threatened to push the building apart at its foundations, a formerly successful young man bitter with bile the central mass holding it together. The core of this black hole, he was the centripetal push to the furniture’s centrifugal pull, the waning gravity of his wasted frame asleep on a chaise wedged under and against the keys of an upright piano. 

Beyond any Medicaid definition of ambulatory, this client was literally and figuratively homebound. 

Trapped behind and beneath the contents of a house stuffed into a studio, his pulse was about to implode under the immeasurable weight of dreams in dissipation. The day he died I watched his parents put it all out on the street, not wanting to keep even so much as a snapshot, not a trace of his memory. Theirs was the story that came back unexpected, unbidden at a required group therapy, grief counseling for AIDS workers, my only abusive patient the one I most grieved, colleagues taken aback, shocked into silence at seeing me unable to speak, unable to stop from shaking at the utter loss of him, as if he had never been born.

******

“Eight o’clock at night I could be broke, one phone call and twelve hours later I got four hundred thousand dollars in my pocket on a flight to Amsterdam. That’s the way I used to be,” H told me, angular even in his bathrobe, stepping gingerly about his kitchen as if the linoleum were shattered glass, his feet not carpeted in fleece lined slippers, each toe separately swaddled in lamb’s wool.

Everything about him was incongruous; I had never driven out to Wellesley on a home visit, half expected a mansion, had no idea the wealthy college town had cinderblock construction by the highway overpass on its outskirts, my new client waving as I parked my car on the gravel, his figure the only animation along a row of storm doors straight out of the rural south, or some northern mill town.

“I was an asshole,” he informed me: Irish mob, didn’t listen, started smuggling smack, sampled the product, and now the phone didn’t ring anymore, and none of his old friends—contacts, he told me, they couldn’t be friends if they couldn’t take the time to ring—took his calls.  “Like I got the plague or something. Fuck, I do have the plague. Or something.”

The first two visits, he didn’t let me treat him, just wanted to talk.

“My legs already feel like pins and needles, now my doctor sends you to stick me full of pins and needles?”

What he needed was salt water: nothing had more curative powers than salt water, he said; his mother taught him that. Just wade in the water she had always told him whenever he had a cold; just wade in the water right there off the shore in Southie—South Boston—where he grew up. If he had only listened to her about other things. His brother had listened; they were a regular Billy and Whitey Bulger, the two of them: one a saint, the other beyond redemption.

He was all right, his brother; only one who still came to see him. Him and an ex-wife with his kid—they weren’t infected, thank God. He hated his kid coming to this hellhole to see him. But his kid was good—she was good—didn’t show on her face that her old man looked like shit and lived in a hellhole. She had respect. Respect was important. Did I know that the baker in town always gave him fourteen rolls for a dozen? Not even thirteen, like a baker’s dozen, but fourteen, out of respect. Still. Even now that he couldn’t get out, he could get the baker to deliver—had I ever heard of a baker who delivered? Okay, it was not the baker, but his son who brought the stuff round—still, fourteen rolls. That was respect.

My third visit, instead of the Lazy-Boy in the living room I found H flinging himself about the kitchen, trying to keep the weight off his feet as he stood, pressing down on the table, keeping himself aloft over countertops, the edge of the stove, hanging off the open door of the fridge. He didn’t want help: Sit, he ordered. Have some respect. He had been baking—he loved to bake. He offered me some banana bread—it was good. Better than good, it was excellent. Fresh. Still warm. He watched me in wonder as I ate.

“What?” I asked.

“You’re eating it,” he answered.

“I like banana bread.”

“I like banana bread,” he mocked me.

“What?” I asked again.

“So now you’ve eaten in the death house.”

“Excuse me?”

“You’ve eaten in the death house. Nobody eats in the death house. I’ve got this fuckin’ disease and now even my wife and kid won’t eat my cooking—they used to love it when I baked, but now they look like they’re afraid to even sit or something. So much for visits fucking cheering me up.”

He smiled, but looked like he might do the opposite.

“You want another piece?”

“How about after the treatment?” I asked him.

“Yeah, how about it.  It’s about time I tried those pins and needles.”

******

M told me that before he became too sick, before the dementia took too much of his mind, he would commit suicide by parking overnight in Southie, South Boston, sleeping in his car by the water’s edge: he said the Irish would kill a queer, cross-dressing nigger quicker than strychnine. On paper both the imputed act and the belief that it would actually come to pass appear equally offensive, but in M’s mouth it had a sense of humor, spoken without a trace of malice, his southern lilt making its imagined horror a matter of fact, as if he were thankful he could still count on something—even a random act of bigoted violence—now that his body, even his own mind had betrayed him: he described this manner of demise as if he were grateful that it remained an option. Part of the humor was that the irony of his statement was not lost on him: the prejudice he displayed in depicting the prejudice he perceived.

M’s perception, always unique, became more so as his AIDS related dementia progressed, his speech somehow a series of insightful non-sequiturs, not less-focused so much as other-focused, as if the psychic gauze shrouding his physical world helped him decipher a Braille of the spirit the rest of us failed to notice. After he went into the hospital I didn’t keep a regular time with my visits—I fit hospital treatments in whenever they fell most efficiently amidst the connect the dots of my other home visits—but somehow M always sensed when I had entered the ward; long before I came into view, way down at the opposite end of the hall the bedridden M would start singing from inside his room, cueing the nurses at their station to look up and say hello as I passed, walking the gangway to M’s loud falsetto punching out in staccato rhythm what he had christened the theme song for acupuncture and acupuncturist alike: I-BE-LIEVE-IN-MIR-A-CLES! HERE-YOU-COME! YOU-SEX-Y-THING! YOU-SEX-Y-THING-YOU!

“I just want to go home and see the red clay of Georgia before I die,” he used to tell me. “It’s not that I don’t want to die, it’s just that I don’t want to die here.”

He told me stories sad and wonderful—of community, of a community shunned, of being shunned by a shunned community—all of it home.

“Kind of like Northern Exposure,” he told me, referring to a TV show that was popular at the time. I told him the show was a favorite of mine as well. It’s premise was that a Jewish New York doctor is sent to sweat out his med school loans in service to Cicely, Alaska, population nine hundred twenty-two. That fewer than a thousand souls includes: an ex-con of a local radio-DJ with a degree in divinity from answering an ad in the back of Rolling Stone, whose eclectic tastes and oddly acquired erudition supplied the town and the show with simultaneous soundtrack and narration; a Reaganite retired astronaut and Marine Semper Fi whose money it was that shanghaied the doctor into becoming the show’s fish out of water along this ‘Alaskan Riviera’; the tundra’s first female bush pilot who is the doctor’s literal femme fatale—all her boyfriends die in an exponentially bizarre series of accidents; an orphaned Native American who wants nothing more than to be the next Woody Allen or Martin Scorsese, both of whom are his active pen-pals; a more than May-December romance above the local watering hole that is anything but cliché; and a host of other eclectic, iconoclastic characters who remain somehow always at odds and yet always agreeable. It may not have been what M’s community was, but it was what he wished it had been, what he wished it could be, and what he wished he could go home to, all the pain faded from the stories he told me about the incidents that had sent him into his Northern Exile, beauty all that remained: the red clay of Georgia.

“Can we change the time?” he asked me, speaking of his next scheduled appointment.

I didn’t think much of his request. This was before M went into the hospital, when I was still seeing him in his home. Doctor’s visits, a patient’s desire for company after the home health aide had gone, a need for help with nausea after a particular dose of medication—there are a million reasons for even the homebound to ask for a change in schedule. We made the accommodation and two days later I came at the new time, set the pins, went to step out of the room and let M rest for twenty minutes before coming back to treat his other side.

“Pass me the remote?” he asked, and turned on the set, channel already chosen, afternoon reruns on cable TV.

“Watch this with me?” he said, smiling, as a commercial cut to Northern Exposure’s theme song. And so we watched as if neither of us had a black doctor’s bag, neither of us had a body full of pins, as if all the characters were real and could come through the door at any moment; we watched as if neither of us was homebound, and when it was over we would step outside into the New England winter and see the red clay of Georgia.

******

I had another client, a former prostitute, whose dementia also led her back to childhood—led her back to even speaking like a child, with a child’s tone, a child’s diction, a child’s subjects and syntax—and who would watch nothing but movies with vampires and cry.

******

C used to give me a synopsis of all the sitcoms he had seen the night before—as well as that morning and afternoon in syndication—recounting as best he could all the best jokes, rejoinders and one-liners. He and his father were estranged, his mother deceased, most of his friends passed before him; there was a sister and one friend I saw visit him from time to time, a frail figure I recognized from one of our other clinics. 

I could no longer use many of acupuncture’s most effective points for draining the edema in his lower extremities, a rare form of cancer nonetheless common to the AIDS community having rendered the otherwise emaciated C’s legs as swollen as tree trunks, skin like bark, hard as wood, prone to infection due to poor circulation. I always tried to come late in the day when the fluid would rise in him like the tide, filling his lungs, C drowning on dry land, thirteen floors above sea level in an apartment looking down on the dome of the Christian Science Center. In a storm it was like gazing into a snow globe, a crystal ball into a different century, a different continent, a different disease. Inside, in this century, in this epidemic, I would treat what points were still available to aid C’s labored breathing, massaging his neck and shoulders that throbbed from never being able to lie down for fear of drowning. 

Never. 

We both knew C would only lie down when he was ready to let go, ready to stop struggling for breath; but for now he had a basket on his dining-room/living-room/bed-room/only-room’s only table that his frail friend had brought for him from the gift shop at the Museum of Fine Arts: still wrapped in plastic, a state of suspended animation, it contained a carpet of peat moss painted with seeds and spores and bulbs that he could roll out in his Victory Garden the following spring, the Museum gift shop’s promise to transform C’s spot in the Fenway into Giverny.

C’s life—including his newfound fascination with television comedies—had been devoted to finding a better place than the present.

C passed away long before Seinfeld’s final episode, the one where Jerry Seinfeld and fellow writer Larry David literally indicted their cast of characters for a decade of on-screen bad behavior: arrested for an act of “public meanness” when accidently abandoned in small town America, the sitcom’s central ensemble endure a trial that brings back bit characters whose memorable sufferings stemmed from these main characters’ delinquent doings—not evil acts, just shallow, insensitive and self-centered—scenarios that seemed funny when originally aired, but which in this final episode led to a litany of complaints from the witness stand that are almost painful to watch. Like many final episodes, this one also disappointed devoted fans, but in Seinfeld’s case there was something more; it made fans uncomfortable. The most popular program of the 1990’s, in the end it seemed to turn to its audience—to have turned on its audience—and asked: why did we find this funny?

Long before Seinfeld’s concluding statement, that’s what C asked me one afternoon as I massaged skin over bones, almost no muscle between, just taught cables under paper thin clothes soiled with sweat and whatever collected in the crevices of the wheelchair that was for all intensive purposes C’s primary residence, his permanent address. C had never owned a TV until he became so ill he could not call on any other companion, could not cull the energy to expend on any other pursuits, and he had hoped it would make him laugh, but now in an insight that presaged Seinfeld’s final episode he asked me: why is this funny? He still recounted the prior night’s plotlines, the afternoon’s best zingers, but now in his mouth they all seemed bitter: these people are just nasty to each other, he said. He wasn’t decrying violence on TV or gratuitous sex or any other commonly conceived immorality: he didn’t label anything he saw as evil, just shallow, insensitive, self-centered. He wasn’t judging, just describing; if anything, he sounded fearful. Perplexed. Confused. C asked me if there was something wrong with him, if there was something he wasn’t understanding. In his isolation these characters had become his community: why were they hurting each other? Why did he hear the laugh track when someone said or did something hurtful? Weren’t they supposed to be friends?

C looked up at me over his shoulder: the illness had made him an old man by his thirties, but like so many old men he looked like a baby. He was beautiful, his voice half a question as he proclaimed: if I had known life could end up like this, I would never have done anything nasty to any one, not so long as I live.

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