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In the Eye of the Storm: One Doctor's 30-Year Journey Through the AIDS Crisis

January/February 2017

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As my shoes clicked on that glistening surface, the pungent odors of sanitizer, shit, and urine -- a smell unique to hospitals and nursing homes -- wafted unpleasantly into my nose. And from some of the rooms emanated sounds of suffering: groans, cries in varying intensities, hacking coughs, or vomiting. If I heard laughter I suspected dementia or an inappropriate response to illness, for there was little to laugh about on 11 West. Rounding on terminally ill patients filled me with overwhelming sadness and wasn't something I looked forward to, for my performance didn't matter to those too sick to care; and to those in an earlier stage of their disease, I feared I might stumble over or forget my lines. They hung on every word and gesture, as if what I said or how I said it held the key to their salvation or pointed the way to their demise. It was a pressure almost too much for me to bear.

The first room I entered that morning was that of my patient Tony, only twenty-eight years old. Although he identified himself as African-American, he was light-skinned and sallow, his hair shaved down to the scalp. A nice looking man with a pleasant personality, he'd become my patient not long after testing positive for HIV. In such circumstances, when a person grapples with a life-threatening disease, he and the doctor either bond, or don't, as on a first date. We bonded, in part because we shared one important trait: we were both gay. This mutual knowledge shattered the barrier that often arises between doctor and patient. Although I didn't share details of my personal life with him, we spoke the same language and could understand each other on a human level, which increased his trust in me, and my comfort with him. One week earlier I'd sat on the side of his bed holding his hand as we talked about how he'd get out of the hospital and resume a normal life for a while. I'd been treating him with intravenous antibiotics for an intractable sinus infection, but each day I watched him descend deeper into a depression as he spent more time in bed, clutching the left side of his head in pain.

It wasn't long before his depression began to grate on me. Why didn't he want to go home, I wondered? On the day he was supposed to be discharged, I asked him to stand up after examining him in bed and finding nothing obviously wrong. Not believing that he was as ill as he claimed to be, I wanted proof that he was incapable of managing on his own. Bracing himself on the handrails as he rose from the bed, he took a few steps forward and staggered, which startled me. With my hands on his shoulders to stabilize him, I guided him gently back to bed, as it finally dawned on me that he wasn't exaggerating his symptoms, but suffering from something more serious than sinusitis or depression. And he was. The next day, he had a seizure and lost consciousness. A CAT scan of his brain showed multiple tumors; diffuse disease of the white matter; and swelling of the brain -- images suggesting that his death was imminent. I'd not suspected the diagnosis, so convinced was I that something more benign caused his headaches and fatigue. But miraculously he improved after I prescribed high doses of steroids, which alleviated pressure on the part of the brainstem that controlled his vital functions.

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On this particular September morning, several days after the seizure, I found Tony alert but debilitated by severe neurological deficits. Invariably, his room was dark except for a television that blasted inanities. Passing the bathroom, I glimpsed him in the flickering artificial light lying on his back with his neck twisted to the left ("looking at the brain lesions," as the consulting neurologist explained his awkward posture) like someone who'd had a stroke. His lower lip protruded outward and he breathed through his mouth, but both lips were scaly and cracked from an inability to moisten them. His face glistened with oil, and he smelled of urine and sweat, despite the nurses' best efforts to keep him clean. How much had changed in so short a time, I thought! A once vibrant young man seemed to have aged fifty years. A fleeting feeling of pity passed through me as I approached the bedside, but as a doctor, one learns to suppress emotions, for unbridled emotions can cloud clinical judgment and lead to faulty decisions. A sick person wants to see strength in his doctor, not weakness, although too much suppression makes the doctor seem cold and uncaring. Finding the right balance between compassion and aloofness was something I struggled with each time I confronted a dying patient, or any patient for that matter.

Pulling up a chair, I sat down beside the head of the bed and called Tony's name. "Hello," he responded in a garbled voice, unable to turn his head toward me. The muscles on the right side of his neck appeared deceptively muscular, because of the strain on the left. With his neck bent in such a vulnerable way, he reminded me of a sacrificial lamb waiting to be slaughtered. An impairment of his eye muscles prevented him from looking at me directly. And even if he could look, each eye roved separately, without coordination. Although he squeezed my fingers in his left hand when I asked, indicating higher cognitive function, he couldn't move the rest of his arm. I asked myself if this was the best he'd ever be. Probably, I concluded. What a nightmare! I should never have tried to treat him, I lamented. It would have been best to let him die, rather than to leave him here in the hospital to languish in such a dependent state for the remaining days or weeks of his life. Of course, I didn't tell him this because it was my job to give some degree of hope even in the most hopeless situations. Yet given the severity of his disability, it wasn't possible to have a meaningful conversation with him. All I could do was pat him on the shoulder, grope for a few reassuring, if meaningless words, and move on.

The two other patients I rounded on that morning were faring no better than Tony, and both were destined to die in the near future. One had a partner who cried when I gave him that cruel prognosis. He wasn't ready to let his lover go. I hugged him as he sobbed into my coat, while I fought off my tears, unable to imagine how I would react if my own partner were on the verge of death. In normal circumstances, we'd be elderly, our sorrow no less painful but mitigated by the knowledge that we'd lived a long life and our times had come. But 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 Kevin had already fallen asleep in the bedroom of our home, 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. They 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 from 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 helpless as Tony on the day I penned those observations. 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 -- hardly the role I'd envisioned as an enthusiastic, idealistic twenty-seven-year old man with the newly minted initials "M.D." after his name when he graduated from medical school in June 1981. And now more than ten years had passed since the first cases of AIDS had been identified in the United States. I'd been immersed in AIDS since its initial recognition, when I began my internship in July in Family Medicine at St. Joseph Hospital. Two weeks earlier, in late June 1981, the Center for Disease Control in Atlanta, Georgia, published the first report of a strange, lethal infection among a cohort of gay men in Los Angeles. I read the report in the hospital library wondering what it meant. As a gay man, was this something I was supposed to worry about? As a young doctor, would I ever see a case? I had no clue 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 half my chronological one.

After opening a practice with my partner Tom in 1984, we became one of a small group of openly gay, regional experts dealing with this horrific disease. By 1992, when I made the entries about those three AIDS patients, I had the dubious distinction of having signed more death certificates in the city of Chicago -- and probably in 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 barely entered my mind that morning when I finished my rounds, recorded my observations and recommendations in my patients' charts, and returned to the bank of elevators without any acknowledgment of the beautiful urban landscape outside the windows. Lost in thought about my upcoming day, I descended to the first floor, stored my grey coat in a locker in the doctors' lounge, exited the hospital for the garage, slipped into my car, and headed to my office, Hell's waiting room.

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This article was provided by Positively Aware. Visit Positively Aware's website to find out more about the publication.
 
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