@notWWJDjswgc: A Breeze from the East: Remembering Boston’s AIDS Care Project, The Home Visit Program – Part 2

This is the last in a series of posts that over the past few weeks @notWWJD have testified 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; and the fourth began this two-part exploration of the remnant of ACP that will remain: ACP’s home visit program, as I remember it in the mid 1990s.

 

A Breeze from the East

I remember it as clearly as others recall where they were when Kennedy was shot, when the space shuttle exploded, or the twin towers came down. It was oddly overcast, but without so much as a sense of rain, a warm breeze more May than October sweeping down Huntington Avenue past the Pizzeria Uno, catching the neighboring door of the YMCA residences, propped open to enjoy this deceptive cadence of Indian summer. The breeze at my back pushed me inside to reception, where they would call up to my first client for the afternoon, after which I would ping pong back and forth down the hall, treating each Section 8 apartment—a single room and a bath, kitchenette in the corner—like a private treatment room. Three, four, five clients going at once, checking in with one of the social workers on staff to see if there was anything I should be aware of before I started, checking out to let them know the same before I left.

The news that day greeted me before I ever made it upstairs, a couple of the residence’s more ambulatory clients who came to the main clinic gathered around reception, talking excitedly of rumors that were spreading at client advisory board meetings, along telephone wires, a nascent internet, words as surreptitious as that strange wind that also seemed to signal something was coming: something new, unexpected.

A new class of medicines that actually worked was being expedited for release; almost anyone would be able to get onto a clinical trial. I had heard—they had spoken—such rumors before, but this time the wind made it real; not because I knew it, but because I could feel it, blowing in around me. Nature had provided her emphasis, the odd weather a mental thunderclap, the overcast not an oncoming storm, but clouds departing; this unseasonably warm breeze was blowing the worst of our weather away—heavy cloud, but no rain.

A few years before Dr. David Ho had made public his then still controversial assertion that the human immunodeficiency virus was what caused AIDS, outlining the mechanism by which that fragile protein played hide and seek inside the body’s immune system, replicating and reinventing itself, exhausting its hosts, undermining their survival in order to promote its own. Around the same time an infectious disease specialist from China who also conducted pharmaceutical research on ancient herbal remedies spoke at my school when he came to town for an AIDS research symposium at Harvard Med.  He did not think Chinese herbal medicine had an answer for AIDS in the sense of a specific herb or remedy, but he was adamant about what it had to offer in terms of strategy: just as Chinese herbs are prescribed as a formula—think of how the salt, garlic and coriander in combination treated the tofu in J’s imaginative exercise (from our second post)—this physician and pharmaceutical researcher argued that HIV’s fickle nature would force ‘Western’ allopathic medicine to adopt a similar strategy, prescribing a formula of pharmaceuticals to address different aspects of the virus, a combination of drugs—a cocktail.

Three years later, that was what the wind carried: a few patients with nothing left to lose had seemingly been snatched back from death’s open door by the prescription of just such a cocktail, some drugs within which we had been familiar for as long as a decade, but which had not been commonly used in combination, and never with this new ingredient now on everyone’s lips: protease inhibitors. One class of the older drugs in the cocktail attacked HIV directly in the bloodstream, but HIV was good at hiding behind borders those drugs had difficulty crossing—in lymph nodes, bone marrow, brain tissue—sneaking through battle fields where those drugs were at a distinct disadvantage. The cocktail’s other class of older medicines tried to prevent HIV from infecting the immune cells whose mechanisms it then hijacked to reproduce itself, as HIV is unable to reproduce on its own; however, HIV in hiding had shown a startling ability to mutate. These subtle adaptations didn’t decrease its virulence, but did enable the virus to get around this second set of pharmaceutical roadblocks, eventually using even the toehold of just a few infected immune cells to spew out so many copies of itself that the mutations finally proved overwhelming—both for the drugs and for the person taking them. 

But this new ingredient in the cocktail didn’t care about HIV; it neither attacked the virus directly in the bloodstream nor tried to keep it from infecting the body’s immune cells: protease inhibitors instead prevented—inhibited—those normal mechanisms of the body that HIV hijacked for its own propagation. Protease inhibitors neither killed HIV nor cured the patient: they just worked with the other two classes of drugs to keep the amount of the virus—the viral load—sufficiently low, sufficiently pinned down, so that the patient’s own immune system didn’t get overwhelmed and could consequently handle on its own both HIV and the horde of opportunistic infections that would otherwise have jumped at the chance to kick a man while he’s down. It was like HIV was the boxer Muhammad Ali—who used to just dance around the ring and sustain punishing blows from more powerful fighters for round after round, hiding in the corner, bouncing off the ropes, until his opponent was finally so fatigued Ali could come inside on him and deliver a devastating knockout punch—and this new cocktail of treatment (our salt, garlic, and coriander, so to speak) suddenly stepped in to hold Mr. Ali still. 

Seemingly overnight, our whole practice at ACP changed. Patients who were once referred to us for palliative care—to be accompanied, to be comforted in the process of dying, our role simply to diminish pain, to restore dignity—we were now receiving with a new mandate: diminish side effects, restore resilience so these clients could stay on the drugs that would save their life. 

The drug companies were reporting fail rates from the cocktail’s clinical trials of between ten to twenty percent, but the national Center for Disease Control in Atlanta’s studies suggested the real number was double that, maybe even pushing fifty percent, because the CDC included in their count of clients whose viral load wasn’t controlled by the cocktail all those individuals who couldn’t or wouldn’t stay on their medication. Over the years the cocktail’s drug delivery system would improve, dosages decrease, but in those early days of hope the amount of medicine patients were taking was huge, particularly of the protease-inhibitors, which inhibited the body’s ability to break down and build up new copies not only of unwanted proteins like HIV, but beneficial proteins as well, proteins the body needed to function properly. Depending on a patient’s underlying constitution when they started taking their cocktail, they could experience extreme fatigue, crippling migraines, medication induced diabetes, muscle wasting accompanied by an unexpected distribution of fatty deposits, and, most concerning, severe gastrointestinal distress: explosive diarrhea—which went beyond discomfort and embarrassment to render people housebound, dehydrated and malnourished—not to mention vomiting that threatened to thwart the medication altogether simply because the patient couldn’t keep it down, making it difficult to maintain a therapeutic level in the bloodstream. 

The consequences were dire: even a few missed doses could be enough of a respite to allow HIV, our Muhammad Ali, to come roaring back, not only refreshed, but possibly mutated into a new strain that would no longer respond to the other two classes of drugs in the cocktail—for this patient, or for any other patients who might contract that strain in the future.

That’s where we came in. Again, ACP had nothing heroic to offer: we didn’t have the minds, manpower or facilities of Dr. Ho’s lab; we didn’t have lifesaving medicine’s to dispense; we could not cure AIDS nor significantly slow its seemingly inevitable progression. We merely made its progress less painful, a little less prone to opportunistic infection, but painfully prone to opportunistic infections all the same. We came to a crisis with relatively little in hand but a willingness to say: use me. However, whether you believe or not, for God, that is enough; and for patients—even their doctors—who were unfortunately accustomed to a public willing to turn the other way, unable to see the suffering, to enter into the chaos of others, it is more: it is Hope.

The National Institutes of Health had done studies that showed Oriental Medicine—acupuncture and herbs—to be an effective tool to manage the side effects suffered by cancer patients undergoing chemotherapy, and perhaps even a preferred strategy because they were found to neither interfere with the effectiveness of chemo nor cause side effects of their own when properly prescribed. And what was the cocktail but a form of chemo—chemical—therapy? Similar to chemo, the cocktail worked by disrupting the body’s natural functions on a microscopic, molecular level, but in ways that also had unfortunate unintended consequences on the macro level: side effects that patients knew all to well—side effects that patients not only had to suffer through, but that put the very success of their treatment in jeopardy.

Therefore, rather than a drop in our number of patients, protease inhibitors brought a sudden influx: people who had been healthy but for a nagging fear came into infectious disease units for testing, confirming both their suspicion that they were HIV positive and their hope that they would be prime candidates for these new lifesaving drugs; addicts who had been self-medicating their way to what they believed certain death suddenly saw an option for life, checking into rehab to get clean in the hope that they too could become eligible for this new kind of cocktail; others already under care but who had never considered or given credence to ACP’s ‘complementary’ medicine were willing to try anything in order to stay on their medications, or to stop the side effects those medications had triggered in order to try taking them again. 

Whether from doctor referral, the counsel of a case worker, a social worker’s suggestion, or, most commonly, simple word of mouth, these new clients came to our door, all walks of Boston life brought together by a bond of blood, all differences diffused. 

Then there were those who had been with us from the beginning, the long-term survivors even modern medicine could not explain: maybe for some the cocktail’s advent was like a phone call from the governor five minutes to midnight, but for a few that hour had already passed and yet still they were with us, hanging on in hope of resurrection.

 

***

E’s T-cell count—the number of “generals” in the body’s immune system “army”—was in the single digits; the bottom range of normal is eight hundred.  Various opportunistic infections gather on the horizon when one’s generals fall below six hundred: Kaposi’s Sarcoma, which had rendered C’s legs like tree trunks (in our prior post), could breach one’s defenses when fewer than four hundred T-cells remained; a diagnosis of full-blown AIDS came after one had battled two, often death defying, opportunistic infections with an aftermath of only two hundred generals left standing—or less.

E had been fighting AIDS—not just HIV, the virus that caused it, but full-blown AIDS—for as long as I knew him; therefore at least four years, twice as long as he should have.  He had never been my specific patient, but now, just as that dark October sky had blown in hope on its oddly warm autumn wind that smelled like a summer storm—an unseasonal harbinger of a spring still six months, a daunting winter, away—I received a call from his regular acupuncturist at the main clinic, the MASH unit, our constant Christmas: E had been in the hospital. 

PCP—pneumocystis carinii pneumonia—for the fourth time. 

Few survived it twice: fevers of one hundred and five, body depleted of fluids, lungs literally evaporating, tissues clogged with the dry, desiccated remains of one’s mucous membranes. 

E was home.  Could I visit him? The doctors were watching, waiting. If he survived the winter, if he grew stronger, if his six remaining generals could rally, they would bring in reinforcements—the rumor of the protease inhibitors confirmed—but right now he was in no condition, his body too weak to handle such a taxing drug regimen; E was barely with us, but even that was hopeful: he shouldn’t have been with us at all.

I parked my car on a tree-lined street bracketed by brownstone buildings, underlined by brick sidewalks, plywood in place of glass at the address next door to my destination, a contractor’s sign announcing the sounds of construction within, hard-hatted foot traffic; I had lived just a couple blocks from here years ago, before the city brought down the old elevated orange line, a neighborhood once in the shadows now undergoing gentrification. Once up the steps I pushed through two sets of double doors, a nineteenth century airlock against the elements, entering a short hall, stairs on the right, the door to the second floor of E’s first floor apartment on my immediate left, the first floor half below street level in the front, opening straight to the ground in the back. 

I knocked and waited: E’s eighty-some-odd year old mother would take a while, I was told, but would be expecting me, had been informed of who I was—important as she didn’t speak any English, and I no Spanish. Also as I was forewarned, I heard the sound of paws on hardwood floors—four pairs of them—before the door began to unlock: two panting, purple-tongued chau-chaus. A beautiful breed, but loyalty to their owner, a protectiveness of home, renders them suspicious of strangers: early in our relationship my wife had received a nasty bite from a chau when she had gone to visit a cousin. I guess the cousin hadn’t been thinking, and had held the door open for my wife as they came back from the airport, the first person through the entrance a stranger with her hands full, both my wife and the not so well trained animal on the other side—not accustomed to visitors—taken by surprise. I wondered how E’s chaus were handling his illness, and how E’s eighty-some-odd year old mother could handle his chaus.

The last lock clicked, the door cracked as if breaking a seal, and a wizened woman smiled generously as she ineffectually waved at the dogs to get out of my way. She spoke to them softly in Spanish; absent those phrases I could have as easily believed she was from Eastern Europe, E’s complexion by contrast coming more from his late Filipino father than the woman before me. His mother’s citizenship was a class of its own, to which belonged those people around the world who had experienced both world wars that book-ended the Depression, the demise of colonialism, a cold war that in their case proved more realpolitik than propaganda, prompting their personal participation in the late twentieth century’s global migration of vast populations: wherever they came from, wherever they arrived, they shared more with each other than with anyone else, a people less of a place than of a time—a common generation, citizens of shared circumstances.

And now, through her son, she was experiencing AIDS.

She didn’t have to bring me far to reach E’s bedside: since home from the hospital he had been on the couch closest the door, too weak to make it downstairs to his bedroom, to stand in the shower, sponge baths where he sat in the parlor. We didn’t speak much, limited lung function leaving his voice barely a whisper, like the breeze rustling the leaves, dryly sweeping the sidewalk outside. I listened to his pulse with my fingertips: deep, thin, slow, empty in the third position, missed beats at erratic intervals in long cycles, like a North African drummer—a series of eight, fifteen, back to nine, and only then would it repeat: eight and a skip, fifteen and a skip, nine and a skip, eight, fifteen, nine. It took time to confirm, patience or you would miss it, a long listen. The dogs stood, watching, like an ancient Chinese imperial guard—the statues at Xi’an—the room decorated in dark wood, Asian antiques, mahogany and teak, walls covered with frames, some fill with images of a man I barely recognized as the patient before me, sunk into his makeshift bed-come-treatment table: a leather sofa swaddled in blankets.

I ran my fingers along his skin in search of the proper points in which to place the pins: the pulse, the tongue telling me the prescription, the skeleton—distinct on E’s emaciated frame—providing a roadmap, the musculature bringing me close to an exact address, but once in the right neighborhood, listening with my fingers to find precisely where I should go, where the energy wasn’t right—a discrepancy in temperature the size of a pinpoint, a dampness or dryness or difference in texture along the skin, a slight divot that should not have been—pressing to feel layer by layer, closing my eyes, listening with touch to the dermis, the fascia, the muscles, the bone, feeling all the way down through the surface to what is hidden, what is happening underneath.

Use me: once there it is no longer knowledge, skill only able to take you so far. You have to disappear: you are no longer, you are lost in the body before your own, and all that person may have been, all that that person may have done or have failed to do also being lost, also disappeared, existing only as the assemblage of flesh and bone, tendon and ligament, muscle and neuron, energy and entity that is in need. And that need is also your need, even the environment that surrounds you suddenly a single organism, breathing, balancing, becoming one, and you know: swiftly you pop the package, snap the spine of plastic freeing the sterile needle from its hollow tube and drop the pin into place, manipulating it down through the layers that moments before you had only blindly heard with your mind, but now see through a stainless steel extension of sight only slightly thicker than a human hair, barely a brush bristle, until you feel a pull from the other side, a tug from the inside: you have arrived. You are there.

The dogs laid down on the floor at the side of the couch, their fur warming my stockinged feet as I felt for the next point, prepared the next insertion.

Any physician—whether an acupuncturist or a surgeon—is lying if they don’t admit that a certain degree of success can be attributed to placebo; but we are equally in denial if we think the rest of our recoveries can be explained by textbook knowledge or technical execution: there is something else that stands between placebo and prescription. I had a professor once tell me that I could have made the right diagnosis, selected the right point, found its right anatomical position, placed the pin with the right technique, but if my intention was wrong, the treatment wouldn’t be as successful. By intention he meant something more than wanting the patient to be well; in fact, I don’t think he meant wanting anything at all: by intention he meant an emptying of self, of becoming one with your patient, of saying, “use me.”

Use me.

If anyone understood this, it was E’s chau-chaus; they demonstrated an understanding that often eludes knowledge. They were well trained dogs—not at all like that of the same species who had bit my wife years before—but E concurred that they still retained some of the same aloofness, never affectionate toward anyone except him and his mother, no matter how often a person came to visit. Yet here they were from the very beginning, twice a week, Mondays and Wednesdays, waiting for me at the door as if to usher me in: the first few weeks to that brown leather sofa that had become E’s world, and then to ever larger circles as the radius of E’s reach, the circumference of his being expanded: a guest bed on the same floor, finally his own bedroom off the back garden as his life garnered dimension, E able to descend the stairs. Those dogs followed us everywhere, not as protectors guarding their master, but as witness to whatever passed between us, as if they understood—not that this was a medical treatment, that I was a professional as proclaimed by degree or determined by license—but that healing was happening; I had to keep re-washing my hands as every time I stood still—to hold a point, even to pause with a burning stick of moxa—those otherwise aloof animals came over and gently licked my fingers, great purple tongues lolling out as if to join in, to make their own contribution, to have their own intentions known. E said it was uncanny; he had never seen them behave that way. 

Back at ACP’s offices in the main clinic, word was E’s doctors were having the same sympathetically enthusiastic response—by the time the crocuses were breaking up out of the earth, everyone was so impressed by E’s recovery they were willing to try him on HAART: Highly Active Anti-Retroviral Therapy, the cocktail containing that new class of drugs that had swept in on the wind the previous fall. Although these protease inhibitors weren’t without their challenges, by the time the Japanese maples and gingko trees in front of E’s brownstone were shedding their pollen, a festive yellow strewn across and working its way into the cracks and crevices of the red brick sidewalk like streamers after a street party, E’s condition no longer warranted home visits, and he was eager to get back to his community at the main clinic. A year later we were reminiscing at the changes life had wrought; E was now a regular fixture about Boston, back to working part-time, volunteering at various AIDS service organizations to help others in need, someone you ran into on the weekend, walking with friends, going out to the store, on his way home from the theatre, singing songs from Chicago while crossing the street.

“I keep meaning to tell you,” he said as we stood at the clinic’s front counter in reception, “for like six months after you stopped coming for home visits, Mandy and Jasmine still waited at the door for you.”

“Really?” I asked, surprised; I had heard such stories about dogs waiting for children gone off to college, or for owners who passed away out of the house at hospital or in an accident, somewhere unknown to and not understood by their beloved pets, but I had not heard of dogs pining for the presence of someone who wasn’t a member of their household.

“Yeah. Right at three o’clock, just like when you came. The first couple months they even whined—they’d cry when you weren’t there by three-fifteen.”

“I’m sorry,” I said. “That must have been annoying. They did that every day?”

“No, that’s what’s even more strange. Just Mondays and Wednesdays, the same days you used to visit—as if they knew the days of the week.”

Knew. Sensed. Not the days of the week, not even who I was, but who I was a part of, and when that part was missing. That intention: not to do something, or to be anything, except of use. And sometimes, despite all our knowledge, all our efforts, skill and training, that’s all we can offer, none of those other things enough, our intention all we’re left with: I cannot do this—use me.

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