After that first year, I never developed another venereal disease. When he discovered a cluster of anal warts, I wasn’t too concerned because they could have predated me in his life. I accompanied him several times to the office of a surgeon, one of the few at the time who treated venereal warts in gay men. The topical treatment was painful and curtailed our sexual activity, which had already dwindled, although not entirely for altruistic reasons. Art traveled a lot, or so he said. Sometimes he would be gone for weeks at a time, or he canceled a planned weekend together at the last minute because he had to go out of town or spend time with his daughters. As a trade-off for less sex, he mollified me with expressions of deep affection, which allowed him to carry on a carefully choreographed deception that took me years to discover. I believe he enjoyed spending time with me—perhaps he even loved me—but his compulsion for sex with multiple partners created a conflict that he didn’t know how to resolve.
My love for Art was both hidden from the world and obsessive. Early in our relationship I was devoted to him. It was the reverse of poor Albertine in Proust’s In Search of Lost Time, whom the jealous narrator holds as a near prisoner in order to keep her away from other potential lovers. In my case, I was my own captor. In theory, a captive can escape a captor, but I couldn’t escape myself. What a life! I later thought. As the years passed, I spent many evenings sitting by the telephone waiting for his call, and canceling plans with other friends at the last minute when he did finally phone. I even failed to attend the wedding of one of my medical school friends because I worried about what Art might be doing in my absence. I lied to my parents about why I couldn’t come to their home for dinner on a Saturday night. My excuses were lame and unconvincing. They were worse than the truth, because I was dishonest; but the truth seemed worse to me than any excuse I could drum up.
Although I socialized with my classmates before and after lectures, during labs, and later on our clinical rotations, at night I escaped to a different world. I still found time to study, and during my clerkships, when medical students spent four weeks on each of the primary care services like internal medicine, psychiatry, pediatrics, obstetrics-gynecology, and general surgery, I never missed a day or night of call. But I made no room in my life for anyone except Art, which meant lonely nights when he wasn’t around. I experienced great emotional extremes: elation when we were together, profound sadness and frustration when we were apart. At the same time, shame ruled me: shame for betraying my friends and family, shame for being gay, shame for my dependence on someone who would never fully commit himself to me, each manifestation of shame playing off the others.
Not my family, my friends, or the marvels of the city but Art bound me to Chicago. If you’d asked me in 1977 where I’d be after medical school, I’d have declared Northern California, where I longed to stroll along rugged seascapes or hike majestic mountains or bike through rolling foothills burnished a velvety brown in the autumn sun. But because of his daughters Art couldn’t leave Chicago, and despite the impossibility of ever feeling fulfilled in this relationship, I was too attached to him to consider moving somewhere else. It was an old story, a timeless story, even a cliché, and the central subject of many novels, films, operas, Broadway musicals, and contemporary love songs. The only difference was that for me, trapped by shame and fear of the world’s wrath—some of it genuine, some of it imaginary—my love for another man was still a love that dared not speak its name.
: 4 :
Art’s Final Illness (1985)
Over the span of our relationship, from September 1978 to April 1983, Art often complained about his health. Sometimes it was a sore throat or stiff neck. He’d open his mouth for me to peer in or ask me to put a hand to his forehead to check for a fever. In the early days I found this endearing, and it was a good opportunity to practice on a live patient. Most of the time he had nothing more than a cold; an ordinary muscle spasm caused the stiff neck. He was self-conscious about his fingers and toes, which were gnarled with arthritis, a result of manual labor as a child on his grandparents’ farm in the Northwest. Nothing could be done about those deformities. His bowel problems often amused me because I knew they weren’t due to anything serious. Wincing with pain from an abdominal cramp, he’d dash to the bathroom and then emerge to report—perhaps because I was training to be a doctor; otherwise why would I care—that he’d only expelled gas. Once, after drinking too much sangria in Spain, he lost control of his bowels before reaching our hotel. So typical, I thought, without daring to laugh because to him, shit streaming down his pant leg, it was no laughing matter. Except for that embarrassing incident, I attributed his various maladies and complaints to stress, anxiety, or neurosis.
But then more severe illnesses afflicted him. In 1980 he wound up in the hospital on intravenous antibiotics after a pimple he squeezed in his mustache became infected. Within twenty-four hours the lower part of his face and upper lip ballooned. I sat next to his bed, held his hand, and watched bad TV with him, assuring him that he’d soon be better. In 1981 he developed necrotizing gingivitis, a nasty, foul-smelling gum infection that required antibiotics and multiple painful procedures to debride the inflamed tissues. In early 1983 he broke out in shingles. A thick band of blisters, pustules, and scabs extended from his right lower back around to his lower abdomen, into his groin, and down his right leg. For weeks he writhed in agony and lived on narcotic pain relievers.
Facial cellulitis, gingivitis, or shingles can afflict anyone during his lifetime. Individually, each disease usually has no clinical significance, as we say. Collectively, however, they pointed to something abnormal with Art’s immune system. I didn’t think of it that way then; I just thought he was suffering from bad luck.
But that was in 1983, when we were still a couple, albeit a fraught and doomed one. When he came into the office in mid-June 1985, I became alarmed. In only one month he’d lost twenty pounds. His pants were pulled up and secured above his waist, in the manner of someone twice his age. He might have looked buffoonish, but there wasn’t anything funny about his appearance. It was clear to me that he was deathly ill, although it wasn’t clear to me that he knew it. Tom put him in the hospital for a full evaluation.
That day, recalling all those illnesses, and the sexually transmitted diseases I’d contracted from him, brought my life to a sudden halt. My heart raced, sweat streamed down the side of my face and stained my armpits, and I wanted to vomit. My general health was excellent, but everyone with AIDS felt well until a cough evolved into a life-threatening pneumonia, hazy vision progressed to irreversible blindness, or loose stools transformed into a cholera-like dysentery. I didn’t know for sure that Art had AIDS. He could have had some sort of cancer. But given his age of forty-five, there were few other diseases that could explain his debilitated condition.
I had first read about AIDS in July or August 1981 in the library of St. Joe’s, not long after starting my internship. I often hung out there when I had nothing to do or while I waited for notification of another admission. Among the journals there was an unfamiliar one about the size of Reader’s Digest called The Morbidity and Mortality Weekly Report, or MMWR, published by the Centers for Disease Control in Atlanta. I picked up the June 5 issue because of an article, “Dengue Type 4 Infections in U.S. Travelers to the Caribbean.” Sometimes I fantasized about traipsing through Central Africa or some other exotic locale, as a medical sleuth tracking down tropical or subtropical diseases with unusual names like leishmaniasis and dranunculiasis.
In my habitual scrubs and a long blue lab coat, I headed to a table and opened the journal, my stethoscope and other instruments clattering in my pockets as I sat down. I was stunned by the lead article, which described five previously healthy homosexual men in Los Angeles who’d been diagnosed with pneumocystis pneumonia (PCP) between October 1980 and May 1981. Eventually four of the five young men had died—which was remarkable since at that time only premature or malnourished infants with underdeveloped immune systems or older
children and adults on chemotherapy developed life-threatening infections from PCP. They had some sort of unidentified disease—one with no name yet.
I read more issues of MMWR. In the July 3 issue the CDC described an “outbreak” of Kaposi’s sarcoma (KS) in gay men in New York City as well as California, but KS was a type of cancer arising from the lining of blood vessels, not an infection, or so we thought at the time. Were these diseases something I as a gay man in Chicago was supposed to worry about? As a young doctor, would I ever see a case?
I vaguely recalled having read about PCP in a textbook during medical school, but I had paid little attention to it. I knew something of KS, which I’d encountered in the dermatology clinic at the VA hospital in an elderly man who had purplish nodules on his lower legs. I was lucky to see one, the dermatology resident told me; she’d seen only one other case. It was an indolent disease with no treatment; the man would probably die of something else.
We called conditions like PCP and KS “zebras” because of their rarity. There’s an adage in medicine: “When you hear hoofbeats, think of horses, not zebras.” Once in medical school, a lecturer led off by flashing a slide of a herd of zebras on the African plains. If someone has a headache, he said, the most likely cause is a muscle spasm, not a brain tumor. An otherwise healthy patient with a cough, fever, shortness of breath, and an abnormal chest x-ray probably has pneumonia caused by a common organism, easily treated with an antibiotic. In our differential diagnosis, as we called the list of possible causes of an ailment, we should rule out common problems first before wasting time and money looking for something obscure. We couldn’t know then that the obscure would become common, turning the aphorism on its head.
Soon other strange infections in previously healthy gay men were noted. Three men died of complications from herpes simplex. In most people, herpes is an annoying cluster of blisters and scabs on the lips, penis, anus, or vulva that heal without any treatment; but in these three men, herpes went wild, invading internal organs and the brain. Cytomegalovirus (CMV) blinded two other men. Baffled and worried that these cases were just the tip of an iceberg, the CDC established a task force to search for cases elsewhere in the country and conduct laboratory investigations to unearth a cause. By the end of the year, the CDC had documented seventy-three cases of KS in men under the age of fifty, an unheard-of number. Before 1979 public health officials hadn’t noticed an uptick in cases of KS in the cancer registry, and KS continued to occur in its usual demographic population, men of Ashkenazi Jewish or Mediterranean heritage older than sixty years of age. Beginning in 1981, the number climbed exponentially.
For obvious reasons, the disease piqued my interest. Whenever an article popped up describing more cases or speculating on a possible cause, I filed it away, but at first there wasn’t much published in the medical literature. The New York Times, San Francisco Chronicle, and other coastal papers followed the story, but elsewhere the disease wasn’t on the radar. Then, in December 1981, the Lancet, a respected British medical journal, published a two-page article titled “Immunocompromised Homosexuals.” With its juxtaposition of two negative words, the title struck me as judgmental. It was bad enough to be a homosexual in 1981. Now a pejorative adjective made the noun seem worse than ever. As I read the article, I underlined critical points as if I were preparing for an examination—or my potential obituary. “The case fatality rate . . . has been an alarming 40 %,” the authors wrote. “As well as their sexual preference, almost all of the patients have had in common . . . evidence of infection with CMV. . . . Some other factors, acting alone or together with CMV, must be responsible for the depression of . . . immunity.” Another Lancet article in February 1982 suggested a connection between the regular use of amyl or butyl nitrite, commonly known as “poppers,” an inhaled stimulant that enhances sexual arousal, and the development of opportunistic infections. In some circles the disease came to be known as GRID: gay-related-immune-deficiency disorder.
One of those circles was Howard Brown, where we volunteer doctors spoke to each other tersely between patients about this potential threat to our community. It was easy to dismiss the reports as curiosities, limited mainly to New York and California. Typical epidemics, like influenza, cholera, or the plague, sweep quickly through populations. Other infectious diseases, like meningitis in soldiers’ barracks or college dormitories, wreak havoc on a small number of people before burning out. Would this disease become a true epidemic, or would it burn out? We had no idea. In Chicago we weren’t freaked out yet, just wary.
It wasn’t long before GRID appeared in other US cities. I saw my first case in the fall of 1982, during a rotation in the intensive care unit. The unfortunate patient was a young gay man with PCP, the second case identified in Illinois. His primary physician was Tom. By the time he came to the ICU, he was on a ventilator, his lungs so congested that he couldn’t oxygenate his blood and needed artificial assistance to stay alive. His body was riddled with KS, purplish tumors of various shapes and sizes appearing on his face, trunk, and arms. Some looked like bruises, as if he’d been beaten up. I was as horrified as I was fascinated not only by the ugly eruptions on his body but also because everything we tried to do to save him failed.
He was an anonymous patient, like so many who wound up in the ICU who couldn’t speak because of a tube shoved into their lungs and whose lives were snuffed out before we even knew their names. I knew nothing about his life, loves, or work, which would have transformed him from a helpless object in a hospital bed into a three-dimensional human being. There was no one at his bedside or sitting anxiously in the waiting area, no boyfriend, parent, or sibling to fill in the blanks of his life, to help us understand how this might have happened. I couldn’t feel his fear because, thankfully, he was heavily sedated. And of course I had no idea that he was a harbinger of terrible things to come.
Because we didn’t know how he’d acquired this disease, we donned caps, gowns, gloves, and booties and covered our mouths with surgical masks and eyes with goggles. Dr. B., the thoracic surgeon who’d opened the patient’s chest to obtain a lung biopsy, which ultimately provided us with enough tissue to make the PCP diagnosis, tore off the protective armor and proclaimed in a stentorian voice that the patient wasn’t contagious. Because we trusted him, we cast off our masks too. It was like removing a helmet in space and finding that you could breathe.
I saw a different form of the disease in my clinic in late 1982. On the recommendation of the staff of Howard Brown, which would become a significant referral source for my growing practice, a young man came in with enlarged lymph nodes. Knots were visible in the back of his neck. I felt rubbery lumps under his armpits and in his groin. He had no other symptoms and looked perfectly healthy. Most people who developed generalized lymphadenopathy, as he had, eventually sickened with full-blown AIDS, but we didn’t know that yet.
By this time the disease was popping up in populations besides gay men. What connected these cases mystified everyone, including my friends at Howard Brown and me. We debated possible links—genetic, environmental, or infectious. The threat was both vague and palpable because we didn’t know who among us was truly at risk, though people in four distinct and seemingly unrelated groups—the four Hs: homosexuals, heroin addicts, Haitians, and hemophiliacs—were getting sick and dying. There was a colossal storm out there, but we couldn’t figure out when or where it would strike.
As a result, we had no idea how to counsel our patients or protect ourselves. No one wanted to admit that AIDS was transmitted through sex. The closest example of a disease that was both sexually transmitted and blood-borne was hepatitis B. A good number of men did show up at Howard Brown with yellow eyes and ghastly yellow skin. They complained of nausea, urine as dark as Earl Grey tea, and shit the color of clay. I could assure most of them that they’d be fine. In fact, more than two-thirds of gay men in that era tested positive for exposure to hepatitis B. I was one of them, thanks to Art. Before the Red Cross began screening
blood donations for it, you could acquire hepatitis B through a blood transfusion. Although 10 percent of people with hepatitis B developed chronic infections, only a fraction of those progressed to cirrhosis of the liver or liver cancer. Otherwise it was rarely fatal. No one wanted it, but hepatitis B didn’t terrify us. And it didn’t change our sexual behavior.
But as new cases of AIDS were reported nationwide, public health officials urged gay men everywhere to start using condoms, even when having oral sex. Epidemiologists surmised that AIDS was some sort of infectious disease, definitely blood borne and possibly carried in other bodily fluids. To many men, using a condom for a blowjob seemed unappetizing and unromantic. Some officials went further and advocated that gay men abstain from all forms of sex until further notice, a recommendation that provoked an outcry in the gay community. After struggling so hard to gain acceptance, gay men were being told to give up what they’d been fighting for, the freedom to love whom they desired. Hadn’t many straight people ignored religious dictates to abstain from sex until after marriage?
I wish that I’d been the Paul Revere of the Chicago gay community. I wasn’t. Despite the surge in cases reported nationwide, there were still fewer than two thousand at the end of 1982 and only a handful of them were in Illinois, a number that didn’t impress me. Lacking a firm grounding in the mathematics of epidemics, I wasn’t as alarmed as I should have been, especially since it hadn’t been absolutely proved that the cause was infectious. The virus that caused it wasn’t identified for more than another year. And at this time Art and I were still together, and we were still, infrequently, having sex. Like many other young gay men, I remained in a state of denial about my risk.
Plague Years Page 5
