@notWWJDjswgc: To be of Use: Remembering Boston's AIDS Care Project, Main Clinic

This is the second in a series of posts over the next few weeks @notWWJD that will 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. This post remembers some of those lessons from ACP’s main clinic, circa 1996.

 

140 Clarendon Street

Our main clinic was like Christmas. Something about the cast of the light and the camaraderie among our clients. The Hancock Tower put us in almost permanent shadow except for certain hours at the start of the day when the sun slung in low along Clarendon Street to stream through our windows, but otherwise incandescents on rheostats were needed to banish the darkness every so many beds, the room seeming to bask in the glow of an invisible fireplace as a consequence. 

Ambient music masked ambient sounds—snippets of symptoms, questions to clients: personal, bodily functions. 

Twelve massage tables, six to a side in a single space. 

There were no secrets here. 

The clinic started with this set-up out of necessity, before the private donors, the state contracts, the federal funds, every clinician a volunteer, an hour here, a treatment there; but now it remained this way because the clients preferred it. We had a few private rooms, and rice paper screens for those who wanted visual privacy without losing the sound of others about them; but mostly those rooms were used as overflow, empty except when every table in our central space was occupied. Everyone wanted to be together, to remind each other, to be reminded, that they were still there. The Hancock Tower may have cast its shadow, but AIDS did not cast a pall over ACP; rather, we were a celebration of the life that remained, as warm and bright a glow as any incandescent against the darkness, the hearth that was felt, unspoken and unseen.

There were three four-hour shifts a day, nine to nine, during the busier of which we hummed like a MASH unit, two clinicians and a couple of interns to take weights, vitals, histories, updates. Start a treatment at one table, move to another, set the pins, check the first while you swing back to pick up a third, once he was started remove the pins from the first, do a second phase of treatment, nod to the intern to bring a fourth to the table in the corner and check on the second patient because you needed more time with the first, memorize everything that was said, everything you were doing, every point that was placed, write it all down in the right charts at the end of the round, thick charts identified by code on well-worn tabs, no names. 

Before I was married there was a stretch when I had a housemate who was an emergency room physician in Milton, Massachusetts, on the border of Dorchester during the height of the crack epidemic. ACP didn’t compare to that—it was pretty cozy by comparison, actually, the hours, the pace we kept. An emergency room is not what I meant when I said we hummed like a MASH unit. We hummed like a MASH unit because we weren’t separated by status and rooms, we weren’t cut off one from another by curtains and hallways bathed in bright light. We hummed like a MASH unit the same way we were Christmas: every patient, every practitioner fighting for a common cause in a common room. Some of our clients had only just been diagnosed as HIV positive with few signs and symptoms, still going to work every day with their secret: bankers, lawyers, professors, painters, musicians, retail, restaurants, real estate. Others struggled to step up to the table, only the arms of a friend, the help of an intern making them ambulatory; they qualified for home visits, but they shunned that like the private room: they needed—wanted, craved—the company, their compatriots in the cause, even if only silently sleeping on the next table over, literally pinned down. 

We were a MASH unit because we were where people came in from the war; we were Christmas because no matter when, how or why you arrived, everyone said that it’s good to see you: I’m glad you are here.

As a practitioner, as someone simultaneously on the periphery and immersed in their struggle, the soldiers’ battle, it’s hard to see that courage, that hope, and not feel ashamed, to not want to set your petty cares and concerns—your petty Self—aside and say: use me.

Use me.

Not my knowledge, not my industry, not the skills and attributes I have carefully cultivated through years of training, nor the talents for which I can claim no such credit: use me.

There was a client who came to us after an opportunistic infection: not damage from AIDS itself, but another virus to which we are all exposed, usually without incident, but which among the immune deficient it is able to find a weak enough host upon which to prey. This opportunistic infection had stolen some degree of his sight, irretrievable by operation, uncorrectable by glasses, which caused such blurs and shadows that every morning revealed a new dawn of frustration, the mounting hours a mounting headache, migraines by mid-afternoon, dizziness as daylight failed, nausea by nightfall. He nearly wished medicine had not arrested the infection, had not robbed him of the comparative blessing of being blind altogether. He almost wished this, but not quite. 

His doctor, out of a similar uneasy mix of gratitude, frustration and hope had referred this client to us, uncertain what, if anything we could do. When the client—I’ll call him J—arrived at ACP, his acupuncturist had been honest: she was uncertain as well, confident treatment could mitigate the headaches, quell the dizziness, the nausea, but not restore the optic nerve that infection had ravaged, not restore his sight, the source of his problems. And she was right; a course of treatments later, acupuncture could stop one of his massive headaches dead in its tracks, could prevent them from escalating into a migraine for days at a time. He could walk without fear of falling, eat without fear of throwing up—again, for days at a time—but eventually the symptoms returned because his vision was unchanged, as expected.  Consequently J was referred to me to add herbal medicine into his course of treatment.

First, it should be said—as I told J when he came to one of the private treatment rooms in which I held herbal consults—that these were not the teas and tinctures you mix and match in the natural foods section of the grocery store or pull off the shelves next to the vitamins at the pharmacy. To prescribe these herbs required a license from Massachusetts’ Board of Medicine. Drawn from the Chinese Materia Medica, Formula and Strategies, the prescription I would write was derived from generations of physicians’ careful practice over thousands of years, practice that had delineated therapeutic dosages from dangerous toxicity. Many modern pharmaceuticals had their origins in these remedies, even potent—and potentially lethal—chemotherapy agents such as Taxol. These herbal formulae were not for casual experimentation or homemade recreation, they were medicine, just not in a form stripped down and synthesized into a single compound encapsulated and coated in sugar: they took effort for the patient to prepare and they took effort for the patient to swallow—they did not taste good.  But despite the seriousness with which such herbs needed to be taken, even if J took his prescription seriously, I had serious doubts about their efficacy in his particular case.

“I think what I can do for you is complement the acupuncture so you don’t have to come in for a treatment every couple days to keep the migraines, the nausea, the dizziness and vomiting at bay.  However, although I can weave into that formula some herbs that are beneficial for the eyes, I haven’t seen much in the literature that suggests they can correct vision problems caused by this kind of damage to the optic nerve. It’s up to you; you may need acupuncture less, but you’re going to be trading lying down to a relaxing treatment a few times a week for cooking smelly herbs to drink three times a day.”

J looked at me across a well-worn, donated desk, maybe even a remnant from when the YWCA building in which we were situated had been used for public school classrooms; the floors in the hall, the trim around the doorways seemed to have been cut from the same block of wood, stained in the same century, these private rooms not painted over in the pastels of the central space, all powder blue and desert rose.

“How does it work?” J asked.  I told him how if you walked into a drugstore, about a third of the medicines you would find there stemmed from herbal sources, and gave him a list of names, over the counter and prescription, from aspirin (willow bark) to Premarin (horse urine—people are always surprised to learn that not all ‘herbal’ remedies are derived from plants) to Sudafed (the ephedra plant) and the aforementioned Taxol (the Chinese Yew Tree). The state had certified my skill, and I was full of knowledge, full of myself, maybe more so in this case to compensate for my lack of certainty. “Western” medicine was stronger, but with stronger came more side effects; what we did at ACP didn’t replace any of what that form of treatment had to offer, but it was important to choose the right tool at the right time.  If it was a matter of re-balancing the body, so to speak, to make it a less conducive environment for certain pathologies, we were appropriate—you didn’t go after a fly in your house with a howitzer—but if certain pathologies had already taken hold, Western medicine’s heavier guns may be more appropriate: in any event, you wouldn’t call us first, or alone. HIV was actually a rather weak virus, just recalcitrant; someone could live with it for years, even a decade, having it spread throughout their system and never suffer a single symptom—try that with the flu—but it just won’t go away. It keeps re-inventing itself, persistently recovering, reproducing, wearing you down until other, more aggressive ailments can come in and take down your house, like what attacked the optic nerve of the man before me.  He was lucky, kind of: the howitzer had saved his sight—in these cases it didn’t always do so—but it was a sight impaired: J couldn’t read, couldn’t drive, could no longer go to his job in construction. He had sight, but not enough to function like a sighted person, just enough to make him nauseated, to enable him to avoid obstacles when dizziness knocked him down, just enough to give him migraines that made him shut off the lights and sit in the darkness anyway. The howitzers had been unable to address that, and I knew restoration was more than a matter of re-balancing.

“What do you mean, re-balancing?” J asked.

“Hold out your hand,” I answered, and he did so, large and calloused. Even the skin looked hard, the color of earth.

“Imagine,” I said, pretending to lift something up from the side of my chair, “that I put into your hand a lump of raw tofu.”

I watched as this big man recoiled at just the thought, as if I had actually handed him something of substance rather than a handful of air.

“It’s not appealing that way, is it?”

J was still holding his hand in front of him, over the scratched surface of the desk, looking at his upturned palm and curled fingers with disgust, his blurred vision perhaps enabling him to more accurately frame in his mind the picture I was drawing for him.

“That’s why we cook it,” I continued.

“You may cook it,” he told me.  “I’m Mexican; I don’t eat tofu.”

I laughed.

“May be, but my wife is Indonesian, and she loves tofu.  But before she cooks it, she marinates it in spices—herbs. Squeeze the tofu. Let it run through your fingers: how does it feel?”

Still making a face, J clenched and unclenched his fist a couple of times, the look on his face making it clear his mind’s eye was actively seeing, assessing the imagined lump in his hand.

“It’s like cold, and wet.  Damp.”

“Perfect,” I said.  “So it’s no wonder that in Indonesia the most common way to cook tofu is after marinating it in salt, garlic and coriander: salt dries the dampness, garlic warms the cold, and coriander kind of binds the flavor of the two together while cutting a little of the bitter, acrid taste that can come from the garlic. Chinese medicine is the same way: taking your pulse, looking at your tongue, palpating your abdomen, listening to all your signs and symptoms, we try to understand what imbalances in your body are giving rise to, or making your symptoms possible; some of the herbs in the formula will address certain imbalances, some of the herbs in the formula will address others, and some are there to function like the coriander—to bind everything together and lessen possible side effects certain herbs can create that we don’t want to happen.”

“And I’m the tofu?”

“And you’re the tofu.”

I thought I was clever, that my formulae were clever, but the weeks passed, and although the migraines, the dizziness and the nausea, once only mitigated, were now gone altogether, J’s vision stayed the same as according to the MD’s prognosis and my own suspicion. Still, J came: he came even though he had to pay for the herbs—unlike our consultations or his acupuncture treatments—which weren’t expensive, but he was out of work now and hadn’t had much extra income to begin with. J didn’t need this extra hit to his weekly budget, not to mention the hassle his wife had to endure of boiling the herbs, the smell permeating their apartment, decanting them and boiling again before J could pour a concoction the color of prune juice down his throat, trying not to let it touch his tongue, holding his nose because if you can’t smell you can’t taste. As the weeks turned into months I told J I could switch him to a more mild patent remedy to maintain his other symptoms, a patent that came in a pill and a lower price, the cost and cooking no longer necessary now that we knew the more potent, more specific prescription of raw herbs would not restore his sight—but still he came, still he asked for the strange brew, still he asked to see me every week to check his progress.

“J,” I told him one day as we stood up from the desk, making our way to the door, “I want to make absolutely certain that you understand that there’s a simpler means to maintain your progress, and that I’m not leading you into thinking we’re going to be able to get rid of the blurring, the shadows across your field of vision.”

“I know,” J answered, not surprised by my statement, smiling even, his disappointment since reconciled.

“Then why do you still make the appointments—why do you go through this every week?” I asked.

“I am Mexican,” J answered. “An immigrant. My English isn’t good. I have HIV. I don’t have a job. I don’t look disabled, but I can’t see enough to hit a nail with a hammer.  But every week I come here and you shake my hand. You shake my hand without any gloves, no lab coat. We sit in a room that doesn’t look like a doctor’s office and you listen to me. You call me sir. This is the only place people call me sir. Why wouldn’t I come? Where else would I rather be? My eyes may be the same, but every time I leave here I feel better.”

Not my knowledge, not my labor, not my skills—use me.

Despite how hectic a MASH may be with the electric hum of Christmas as capacitors keep lights lit low, there is a moment in the hush after the symptoms have been said, the week’s stories since the last treatment spoken. Even in the bustle, the constant exit and entry of the main clinic’s central space, accompanied as it is by the buzz of heat lamps, the thrum of air filters whisking away wisps of burning moxa, the medicinal mugwort that glows red, smoldering like incense, there is a moment for patient and practitioner alike when all this slows to a standstill, a barely beating tableau: seated on one side of the same table, hip to hip one hunches over the other, hearkens, listening, placing his palms carefully over the wrists of the other, the client’s hands resting atop his abdomen as he watches his caretaker’s eyes: closed, feeling, seeing by touch, three fingers on the radial pulse like the valves of a trumpet, pressing, raising, comparing one to the other, first finger to third, left wrist to right, the distinction of patient and practitioner for a moment vanished, lost in the pulse, that thin ribbon of life between them: is it fast or is it slow, sunken or superficial, hollow or hidden? Slippery, thin and thready, or wiry, tight and hard?  Broad and rolling or narrow and hesitant? Felt more strongly by the first finger or the third?  Is the second position fostering or feeding on the first, drawing or draining from the third; does it differ at different depths or keep constant? Is the left balanced with the right, in all positions or only some, which ones, in what way, why?

It does not matter when or how we came to be there, together at that table; how one came to carry HIV in that pulse, how one came to care; whether the one lying down will prove a long-term survivor, or the other who stands at his side will soon succumb to the host of ailments and accidents other than HIV that kill millions unaffected by AIDS every day, hundreds, maybe even thousands just in the space of time it will take to go home at the end of his shift. In that moment of mutual meditation it does not matter that there is a me and there is a you—there is only a me and you, meeting inside the one thing that does matter, the only thing we are trying to maintain, that we need to nurture: the pulse.

It’s good to see you.

It’s good to be seen.

We’re glad we are here.

Still here.

Use me.

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@notWWJDjswgc is 1 of 3 streams of tweets and blogs from Good Counsel. To learn more, follow me on Twitter or visit the "Read Me" page at goodcounsel.squarespace.com