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
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.
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