In the Eye of the Storm: One Doctor's 30-Year Journey Through the AIDS Crisis
A couple of years ago, I reread some journals I'd kept during the worst years of the AIDS epidemic. I hadn't looked at them in more than a decade and was surprised not only by their vividness but also by the rawness of their content. They brought back memories of a time I'd almost forgotten or, rather, repressed because of the intense sadness they evoked. As a doctor, I was taught to keep an emotional distance from my patients. Too much emotion clouds one's judgment. But how does one keep an emotional distance from men who were like me at the time, young and gay and who ought to have had more tomorrows than yesterdays?
It took me many years to look at those journals again. So much had changed in the interval. Having HIV was no longer a death sentence, at least in the United States. A universally fatal disease had become a chronic one. It was possible, and likely, that my HIV-infected patients could live a normal lifespan. What a medical miracle! Enough time had passed that I wondered if I could turn these journals into a book. But how could I create something original?
There have been many books on AIDS, most written before 1995 when the first life-saving and life-restoring medication regimens became available. As time passed and more people survived than died, the story of AIDS seemed to end there. Other diseases began to terrorize the public, like Ebola, SARS, and now Zika. Writing about AIDS is passé, some people think. But HIV hasn't vanished. Every year, 40,000 to 50,000 new cases of HIV infection occur in the U.S., the majority among gay men and now primarily in men of color. PrEP may dent the numbers, but until there is a vaccine or cure, HIV/AIDS is here to stay.
I decided to write a memoir, because my career has been defined by the AIDS epidemic. It has followed the arc of the epidemic, from the first recognition of the virus to the present era. That's what makes my book unique. In 1981, I was an intern in family practice at Saint Joseph Hospital in Chicago. Thirty-five years later, I'm still here treating people with HIV/AIDS. The challenges I confronted in the '80s, '90s, and early 2000s differ from the challenges I face today. At first, I tried to prevent my patients from unduly suffering because preventing death was impossible; then I helped them live a few years longer than expected with the hope that a successful treatment would save them. Later, that treatment arrived. Now, the challenge is to keep the vulnerable from getting infected and to be a cheerleader for those infected who might become complacent and less compliant with their medications.
Although it is unlikely, HIV can wipe out another generation again. All it takes is a failure of resolve, especially from politicians who might deny access to life-saving treatments, whether through the termination of programs that fund the AIDS Drug Assistance Program or by allowing health care premiums to become unaffordable. I'm not predicting that scenario, but the lives of many depend on the kindness of strangers. My book serves as a cautionary tale for those who've forgotten or are ignorant of the ravages of one of the worst epidemics in human history.
It is a wondrous tale that I have to tell: if I weren't one of many people who saw it with their own eyes, I would scarcely have dared to believe it, let alone write it down, even if I had heard it from a completely trustworthy person ...
-- Giovanni Boccaccio, The Decameron
Chapter 1: No End in Sight (1992)
To the casual visitor, the west wing of the 11th floor of St. Joseph Hospital didn't look like hell. The elevator let people off into the solarium, a light-filled semicircular space with a panoramic view of Lincoln Park and Lake Michigan. In the distance, facing east, a few sailboats plied the placid waters beyond the stream of traffic on Lake Shore Drive; in the foreground, runners jogged along the tree-shaded paths. Northward, fashionable high rises lined the park's perimeter; to the south, one glimpsed the iconic skyscrapers of downtown Chicago. And to the west, not visible from this vantage point, was Boystown, the city's gayest neighborhood, a jumble of bars, restaurants, sex shops, and cheap apartments -- the epicenter of the AIDS epidemic in Chicago. It was September 1992 and the city brimmed with life, in stark contrast to our AIDS Unit, where death reigned.
Occasionally a patient sat in a chair admiring the scenic vista or reflecting on his own mortality, his back in silhouette and body connected to an intravenous line that snaked from a plastic bag atop a metal pole and disappeared into an invisible arm. If the patient were someone I couldn't deal with at that early morning hour because of an intractable medical problem or difficult personality, I'd try to sneak by and speak to him later, when I had only minutes to spare before fleeing to my office two miles away. It was harder evading his family or lover, who waited anxiously for me to give them an update on their loved one's condition or to ask questions I often couldn't answer. These uncomfortable encounters foreshadowed my visits to the sick and dying patients in their rooms on the ward. Despite the cheerful urban vista 11 stories below, I was never deceived: 11 West, as we referred to our AIDS Unit, was a kind of inferno, with no one but I to guide me down to its deepest circles.
On several floors, including the 11th, three wings -- north, south, and west -- converged onto a solarium, a configuration that shaped St. Joseph Hospital into an enormous cross thirteen stories tall. It was a Catholic institution after all, administered by the Daughters of Charity, an order that once commanded the largest nonprofit fleet of hospitals in the United States. The Daughters soft-pedaled their religion. There were, of course, the requisite crucifixes in strategic places for all to see. But everyone was welcome, regardless of religious belief (or non-belief), race, gender, or sexual orientation. In my darkest moments, when I battled unsympathetic colleagues or struggled with internal demons, I sometimes forgot that St. Joe's was a refuge of tolerance. Otherwise, I could never have practiced there.
I'd exited the two elevators on the 11th floor so many times during the past four years since we'd established the AIDS unit that I rarely bothered to look out the floor-to-ceiling windows. I was usually in a hurry and took the view for granted. Pushed and pulled in many directions, I had a lot to accomplish in the two or three hours I could dedicate to hospital rounds. Whether one turned right or left from one of the two embankments, 11 West laid straight ahead, its gleaming linoleum floors forming an elongated, truncated triangle in perfect perspective. From the patient rooms emanated rectangular splashes of light, if all the doors happened to be open. It was like a runway or stage. But the drama rarely occurred in the hallways. It was on the sidelines, in each room, where a tragedy unfolded. Dreading this, I procrastinated at the nurse's station, gossiping with the unit secretaries, nurses, and other attending physicians, as if I were at a pre-performance party and not in the grim confines of a hospital. Then I got down to business and thumbed through the charts, catching up on the previous day and night's events, and reviewing the notes of the interns, residents, and consultants or searching for important lab and x-ray results.
With an impression of the patients' current conditions in mind, I took a deep breath and walked onto that stage, like an improvisational actor, uncertain of what my audience would demand of me. Dressed in my doctor costume -- a long gray frock with a pen and penlight clipped into a breast pocket; a stethoscope stuffed into one side pocket; and a prescription pad into the other -- I exuded the confidence of a seasoned performer, although I felt anything but self-confident. That lack of self-confidence stemmed not from inexperience or inability -- I'd been a licensed physician since 1981 and had treated people with AIDS for a decade -- but from the impossible expectations that patients placed on me, and that I placed on myself.
Doctors are often referred to as healers, or as practitioners of the healing arts. I thought of the two Dr. B.'s on our staff, cardiovascular surgeons, who performed life-saving procedures like cardiac bypass surgery to stave off heart attacks; or my orthopedic friends, who fixed hips and repaired other fractures that in a distant era would have left their patients crippled or deformed for the rest of their lives. But on the AIDS ward I wasn't healing anyone. I was ministering to my patients, as doctors once did in the pre-antibiotic era, doling out bad news, holding a hand in sympathy, or expressing my condolences in response to an incurable, fatal disease. Under such conditions I felt more like a failure than a success, even though HIV-infected gay men flocked to me from the city and suburbs or from neighboring states because of my expertise and reputation.
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.
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.