Plague Years

by Ross A. Slotten, MD

  The next patient I visited was a man named Robert, who suffered from an AIDS-related brain infection known as PML (progressive multifocal leukoencephalopathy). Like Troy’s, his head was twisted to the left, which was only a coincidence, for the young men suffered from different brain diseases. Each time I stopped in his room during rounds, he recognized me, even when I thought he couldn’t see me; it was as if he had a sixth sense. At the sight or sound of me, or anyone, he reared up stiff as a rocking horse, head arcing forward, knees bowed toward his face. Despite the devastating brain infection, he had complete control over his mental faculties. Before his illness, Robert had performed in the chorus of a major opera company. Now dozens of get-well cards from fellow artists and friends cluttered the room; cards had been taped to the curtains that divided his space from that of another AIDS patient. Vases of flowers had transformed the dreary windowsill into a miniature greenhouse. A note on the dresser beside his bed begged the staff not to remove a ribbon pinned to his gown (it was a symbol from his church), but I’d not seen it in days. A copy of Opera News lay unopened on a chair.

  A once corpulent black man, Robert had withered nearly into a skeleton. When I first met him, he had been something of a bon vivant. He loved to tell stories, and it was a pleasure listening to his rich baritone voice—he all but trilled at the ends of sentences. He told me once about a rehearsal of an opera, Der Rosenkavalier, by the German composer Richard Strauss. As he sang, he had flung out his arms, inadvertently striking one of the leading sopranos, who had a notorious reputation for confrontation and ill-temper, in the face. The conductor stopped the orchestra, and several painful seconds passed as everyone on stage froze in horror. Mortified and expecting to be fired on the spot, Robert apologized profusely; but, unhurt, the soprano waved him off with a smile, and the rehearsal continued. Trill!

  Now, although he didn’t have a fever, Robert’s brow was beaded with sweat. As he drooled, an unpleasant odor wafted from his mouth, like the acrid smell of old blood. Unable to control the movements of his arms and legs, he couldn’t hold a cup or plastic urinal. A Foley catheter had been inserted into his penis to prevent him from soiling himself. The skin of his thighs, calves, and feet, taut with fluid, looked like shiny shellacked table legs. He asked me for a glass of water. In fact, he ritualistically asked every visitor for water. Refusing a straw, he drank at a glacial pace. I could hear him swallow in loud gulps, but the water level in the glass barely changed. Water fell onto his chest in droplets, which I mopped up with a washcloth. After drinking, he mumbled “Thank you,” then asked me, in a tremulous tone that was a mere echo of the magisterial voice of his more robust days, when he’d be able to walk again like the AIDS patients he observed walking up and down the halls.

  “Robert, you won’t walk,” I said. “If it were pneumocystis or CMV we could treat it and you’d get better, but there is no treatment for your problem. I’m afraid this is the best things will be. I know it’s horrible.”

  The words sounded cruel to me, but I couldn’t lie to him, for nothing would reverse the progress of his disease. Robert paused for the longest time, pondering my statement. When gauging someone’s thoughts, we depend on facial expressions and body language for clues to inner feelings, but Robert’s PML had destroyed those physical cues. I guessed that he was bewildered or shocked, as if I’d told him about his illness for the first time. After an excruciating silence, he asked me when he could go home. I had to tell him that he couldn’t go home without around-the-clock care, which was beyond his means. Although he had a large group of friends, no one could make that kind of commitment, I said. And his mother, a sweet but frail woman in Louisville, Kentucky, was overwhelmed by her son’s medical condition. After spending a week in Chicago at his bedside, she had returned home for a few days but planned to take a leave of absence from work to help care for him. But even with the assistance of home hospice, I couldn’t imagine her lifting him or carrying him to the bathroom or helping him into a wheelchair every day for weeks or months. Like Troy, he would most likely remain in the hospital until his death.

  The third patient I rounded on was Steve, who’d suffered during the last few months from intractable diarrhea, advancing Kaposi’s sarcoma, CMV retinitis, and neuropathy—one devastating AIDS-related problem after another. His lover Sean confided to me that at home he exploded in fits of rage, which upset Sean and their roommate Heather. On a previous admission he’d groaned all night, his nurse Rita had reported, but he told me that he was “all right.” I knew he wasn’t. Should he give up or go on? he asked at every visit. He wanted to do both but couldn’t decide. Before becoming ill, he had worked as an artistic director at an advertising firm. He had been a handsome, tall, lanky white man. Now a beaklike nose jutted out from a gaunt face. His eyes sank into their sockets, and when he slept they remained half open like those of a corpse. Patches of hair were all that remained of his once luxuriant mane. When healthy, he had been self-conscious about his psoriasis, which spared his face but erupted in red scaly plaques on his torso, extremities, and penis. As he became more immune suppressed, his psoriasis had all but disappeared, for reasons I couldn’t explain. What replaced the psoriasis was far worse. He had the papery tan skin of a mummy. In fact, his whole lower body was mummified. Kaposi’s sarcoma had turned his legs into purple-brown carapaces and bloated his feet like those of a dead body floating in a river.

  Sean had brought him to the hospital initially because of a severe headache, but after a thorough workup I couldn’t identify a specific cause, and never would. One day he became confused and began mumbling. Restless, he grasped and picked at the sheets like someone with a severe obsessive-compulsive disorder. When I’d spoken to Sean earlier in the week, before Steve’s final hospitalization, he said he wanted it “straight” and used a tough-guy tone inflected with a Boston accent—many of us gay men in those days went to great lengths to appear more masculine, or butch, in the eyes of a disapproving world. When I gave it to him straight, he cried. He knew that Steve’s condition was hopeless, but he couldn’t let Steve go. That morning he stood at the bedside gripping the guardrails and sagging in despair. He followed me out of the room to ask more questions, beyond Steve’s earshot. Hugging him as he sobbed into my coat, I fought off my own tears, unable to imagine how I would react if my own boyfriend verged on death. In normal circumstances we’d be elderly, our sorrow no less painful but mitigated by the knowledge that we’d lived long lives and our time had come. We were all too young to be dealing with such monumental issues.

  I marvel how people can hold on to the thinnest thread of hope when the only outcome, death, is obvious, I reflected in my journal that night. My partner of nine years, Gavin, had already fallen asleep in the bedroom of our townhouse, but sleep eluded me. I sat in bed by the lamplight and scribbled down whatever thoughts came to mind without attempting to interpret what I’d experienced that day.

  It’s as if a person is clinging to a cliff. You clutch both hands but one hand slips away. As you tighten the grip on the other, it too slips away. In desperation you grab a piece of clothing, but that piece rips off. The person falls screaming and all you’re left with is a fragment of cloth. And still you believe the person is somehow alive. All three of the patients are cloth fragments, I think. You can’t classify them as living. They breathe; they sweat; they urinate; they shit—the only evidence of life. Otherwise, they’re in the land of the dead. They reek of death—from the skin, from the breath, from the rectum, from the interstices of their human shell. The stink of AIDS, which stinks like no other disease I know. Each death from a particular disease has its own stink. AIDS patients rot from the inside out, though they often rot from the outside in. When they breathe, the rot pours out, like the smell of waste from a sewer. Their bodies are sewers. Death for them is rarely peaceful or beautiful. It’s a relief!

  But whose relief was I referring to? The patients’, the families’ and friends’, or my own? I felt so weary, in some ways as helples
s as all three of these men. I was a caregiver who shepherded his patients from the land of the living to the land of the dead, like the boatman Charon, ferryman to Hades—not the role I’d envisioned as an enthusiastic, idealistic twenty-seven-year-old man with the newly minted initials MD after my name when I graduated from medical school in June 1981. As an intern, unlike as a medical student, I was in charge of my patients, which I had found exhilarating. In consultation with each patient’s private physician and my supervising senior resident, I had learned how to manage all sorts of patient problems, modeling my bedside manner on that of doctors I admired, while noting and striving to avoid the bad traits in those I didn’t. Most of those patients went home, better off than when they were admitted, inflating my ego and my sense of self-worth. Now more than a decade had passed since the first cases of AIDS had been identified in the United States. In June 1981, a few weeks before I began my internship in family practice at St. Joe’s, the Center for Disease Control in Atlanta had published the first report of a strange lethal infection among a cohort of gay men in Los Angeles. I had no clue then that the disease would soon kill friends, former lovers, colleagues, and patients; devastate tens of millions of people and their families worldwide; and consume my entire professional life and more than half my chronological one.

  In 1984 I opened a practice with Tom K., who’d completed his training in family medicine at St. Joe’s three years before I did. Our office was in a nondescript building called Seton Medical Center on the north side of Chicago, on the margins of two historic neighborhoods: Old Town, once the haunt of artists, writers, intellectuals, and other eccentrics; and Cabrini Green, one of the most notorious housing projects in the nation, overrun by gangs but also home to hardworking people who had trouble finding affordable housing because of their race and low income. The Daughters of Charity had bought a vacant garbage-filled lot spanning more than half a block from the city for a low price because it was their laudable mission to build medical clinics in underserved areas.

  Seton’s location was a boon to Tom and me because we both had obligations to the National Health Service Corps, which had funded our medical education. That scholarship, established in the early 1970s, encouraged newly trained doctors to pursue a career in primary care instead of one of the more lucrative specialties like ophthalmology, radiology, or anesthesia. Healthcare planners feared a shortage of family physicians and internists. The scholarship spared us from the mountain of debt many young doctors faced. And I earned some extra money from side jobs (drawing blood from patients admitted to Lakeside VA at Northwestern, where I had attended medical school; performing histories and physicals on patients scheduled for routine surgery; moonlighting in the emergency department at St. Joe’s), and this allowed me to indulge one of my passions, international travel. That provoked my father to jest that I spent four years in medical school and one year touring the world.

  Ordinarily the National Health Service Corps would have assigned Tom and me to positions in the Indian Health Service or rural America, which were in desperate need of primary care doctors because they were remote and poverty-stricken. Only some sort of draft would bring doctors to them, for few of us volunteered to go there. But Ronald Reagan, whom we otherwise despised for his public homophobia and failure to address the AIDS crisis before it spiraled out of control, created the so-called private practice option that allowed young doctors like us more freedom of choice. As long as we practiced in an underserved area and agreed to see patients who were uninsured or on Medicaid, we could remain in Chicago. At first our practice attracted people from the two neighborhoods, but we went one step further: our office soon became a refuge for people marginalized for reasons other than race, mainly men who had nowhere else to go or who had been kicked out of the previous doctors’ practices because they were gay, had AIDS, or were at risk of AIDS.

  By 1984 Tom had made a name for himself in the Chicago gay community through his volunteer work at Howard Brown Memorial Clinic, which treated gay men near the heart of Boys’ Town. With his encouragement, I’d been volunteering there too. Tom was a big man with a big personality, his cherubic face framed by perfectly coiffed chestnut hair and a neatly trimmed beard. His patients adored him, and he had a wide circle of friends. With his charm and ease in a variety of social settings, in another life he could have been a successful politician. Raised in a conservative Dutch Reformed household in suburban Detroit, he was far less reticent about being gay than I, whose parents were liberal secular Jews in suburban Chicago. Although his mother and father had come to terms with his sexual orientation after years of confusion and anguish, others in his extended family continued to sneer at what they viewed as a sinful life; a great-aunt had sent him a greeting card consigning him to hell. For me the journey to full acceptance would take many years, long after I became a respected AIDS specialist.

  In the beginning Tom and I weren’t the only AIDS doctors in town. There were a handful of others, like the two Davids at Illinois Masonic Hospital, Bernie B. at Rush, Tom C. at Northwestern, Michael B. at Weiss Hospital, and a few others who didn’t survive the early days of the epidemic. As gay men, we felt that it was our duty to serve the gay community, which bore the brunt—and continues to bear the brunt—of the AIDS crisis, not only in Chicago but elsewhere in the United States, for two-thirds of people with HIV in this part of the world were and are gay men. Although Chicago is a segregated city—a white North Side and black South Side—AIDS in the 1980s was not a North Side–South Side issue. In the close-knit gay community, patients of all ethnicities and races from every neighborhood found sympathetic, dedicated gay doctors to care for them. Although we also treated small numbers of heterosexual patients who’d acquired HIV through intravenous drug use or blood transfusions, as well as women who’d contracted HIV from a bisexual partner, their numbers paled in comparison to the number of HIV-infected gay men. We didn’t turn away those who weren’t gay, but most HIV-infected heterosexual men and women knew nothing about our office and wound up elsewhere, like Cook County Hospital, where our good friends Ron S. and Renslow S. had set up a clinic and the city’s first AIDS unit.

  Tom and I might never have become AIDS specialists had St. Joe’s employed a full-time infectious disease expert in the critical years between 1984 and 1986. The absence of such a specialist forced us to learn how to diagnose and treat the ailing men who streamed into our practice as best we could. By 1986 St. Joe’s had hired Roberta L., an infectious disease specialist who became a dear friend and fellow combatant in this hideous war, but by that time we’d embraced our role as pioneers in a new field of medicine and no longer needed to refer patients to a specialist. In 1992, as I wrote those entries in my journal, I had the dubious distinction of having signed more death certificates in the city of Chicago—and by inference the entire state of Illinois—than any other physician. How many deaths had I witnessed; how many more could I withstand before breaking down?

  I had no answers to such questions. In fact, such questions eluded my mind that morning in September as I finished my rounds, recorded my observations and recommendations in my patients’ charts, and returned to the elevators without acknowledging the beautiful urban landscape outside the windows. Lost in thought, I descended to the first floor, stored my gray coat in a locker in the doctors’ lounge, chatted with colleagues, exited the hospital for the garage, slipped into my car, and headed to my office. But once in the car, with a few moments alone, the enormity of what I’d confronted tormented me.

  How close we always are, I think, to death, I wrote that day, recording what I felt as I drove through neighborhoods where people went about their business seemingly untouched by the AIDS epidemic. They hadn’t the slightest inkling of what my patients and I were experiencing—they lived in a different world from mine, oblivious to the humanitarian catastrophe at their doorsteps. I live life as if the precipice is continually on one side of me. One step and I’m over and done with. Often I have that same sensation you have w
hen you are on top of a mountain, looking over the edge. An invisible force presses against you, to keep you from falling. A momentary vertigo as you fathom the abyss. That thrill of being so close to death. Yes, a thrill, which is the obverse of fear. Your breath stops mid-way. What keeps me from throwing myself off? I wonder. All these feelings are encapsulated in the moment when I ponder death and I think of my patients dying. That force against my chest, that abrupt halting of the breath.

  Sometimes I wondered what kept me from throwing myself off the precipice, either literally or figuratively. Perhaps it was my idealistic sense of duty and refusal to abandon my community during its darkest hour; or the adrenaline rush I experienced from being at the forefront of a new field of medicine, which exaggerated my importance in my own eyes and the eyes of my patients and colleagues; or the instinctive drive for self-preservation, which prevented me from having a nervous breakdown or, worse, committing suicide; or simply inertia, because maintaining the status quo, terrible as it was, seemed less frightening to me than change, such as pursuing a different career in medicine. Questioning motives sows doubt; doubt leads to indecision; and indecision to inaction, the worst possible response to a crisis, especially for a doctor. So I simply did not question my motives.

  Others might have turned to a pastor or rabbi to address such quandaries, but religion was a foreign language I never learned. Synagogues, mosques, and churches didn’t (and still don’t) inspire feelings of reverence in me, although I respect those for whom they do. When seated in a pew or temple chair, I feel like a trespasser or tourist. Although my parents identified as Jews, they didn’t practice any sort of religion; they described themselves as agnostics. My mother skipped Hebrew school classes and intercepted letters to her parents reporting her truancy until an older sister ratted on her. After his bar mitzvah, my father stopped going to synagogue. My mother eventually explained to me that she didn’t feel comfortable compelling us to do something she didn’t do or, as in my father’s case, did reluctantly. As a result I grew up an atheist whose moral compass was defined not by religious dogma but my parents’ moral code, which essentially adhered to the Golden Rule but without an angry God to reinforce it.