Some researchers in 1996 were so enthusiastic about the new therapies that they broached the possibility of a cure. “The next 3–8 months of study data may well answer the question of whether HIV can actually be eradicated in an infected person,” Dr. Martin Markowitz of the Aaron Diamond AIDS Research Center in New York said. Time magazine named one prominent scientist, Dr. David Ho, its “Man of the Year” for his groundbreaking work in the treatment of HIV, which many people thought would lead the way to that cure.
In Ho’s studies of patients treated shortly after they first became infected, the virus couldn’t be located in the usual places like the lymph nodes, spinal fluid, gastrointestinal tract, semen, or solid organs. But when he stopped HAART after two or three years of therapy—the amount of time he estimated was required for eliminating HIV, based on HIV’s life cycle—the virus suddenly reared its ugly head like a wild beast teased out of the deepest recesses of its lair, to everyone’s dismay. It was then that we realized that HIV lay dormant somewhere, hibernating like a bear waiting for the spring thaw. If the winter lasted long enough, the bear might die, but it was later theorized that it could take seventy years or more for the body to rid itself of every last viral particle. Current medications and medications in the pipeline were able to control HIV infection for an indefinite period, perhaps a lifetime, but not eradicate it.
Despite that disappointing discovery, the success of HAART surpassed all expectations because many of us had thought the therapies wouldn’t work for more than a couple of years. AZT had failed after a few months. Why wouldn’t a three-drug regimen also eventually fail? We were so used to failure and false hope that we disbelieved the evidence around us. The virus remained suppressed and the destruction of the immune system halted as long as the person stuck to his regimen. Like any revolution, none of this happened overnight. The true turning point in the history of the AIDS epidemic in the United States would span another decade, when survival rates far exceeded death rates from AIDS as more people gained access to treatment and an array of medications became available to treat those resistant to earlier therapies.
You’d think that such an achievement would have led to a Nobel Prize in Medicine. But the Nobel Prize is awarded to individuals for their seminal discoveries in various scientific fields and economics or for their work for the advancement of world peace, not to large for-profit corporations like Big Pharma, which often bought promising drugs developed elsewhere and marketed them as their own. Yet what the combined efforts of ongoing research and the pharmaceutical industry had achieved in the treatment of HIV/AIDS was nothing short of astounding. From a universally fatal disease, HIV/AIDS gradually transformed into a chronic one like diabetes. HAART was nearly everything we’d hoped for—and for those of us who had lived through the worst of the AIDS crisis, it was almost beyond belief.
: 14 :
Transitions (2007–14)
On June 7, 2014, I got married, six days after the state of Illinois legalized same-sex marriage. We headed to Daley Plaza with two other couples and descended to a charmless room where an affable clerk, who didn’t bat an eye at six men in suits holding hands, issued our marriage certificates. The setting was hardly romantic, more like visiting a polling place or the Department of Motor Vehicles to renew your driver’s license, but for us it was a landmark moment.
In the 1980s the idea of same-sex marriage seemed preposterous to me. I couldn’t imagine two men exchanging vows while friends and family cheered them on. What changed my mind was the argument that marriage equality is a human rights issue: same-sex couples deserve to be treated with as much dignity and respect as heterosexual couples. Before passage of the law, you might not have had the right to sit by the side of your ill or dying spouse in a hospital or share in decisions about care; if you died, greedy or insensitive relatives could evict your partner from the home you shared together but to which he might not be legally entitled. The law in Illinois had passed by the slenderest of margins because a lawmaker left an intensive care unit where her son lay gravely ill to cast the decisive vote. It would have insulted her courageous act not to get married.
By 2014 same-sex marriage was largely a formality, the consummation of decades of struggle. The real excitement had come on June 1, 2011, when civil unions for the first time legitimized our relationships in Illinois. In front of television cameras and the national press, we joined sixty other prominent members of the gay community in Millennium Park, the de facto heart of the city, for a grand celebration. It was a glorious day under a blue sky, and the flowers, grass and trees glistened with dew. With Tom and three friends as witnesses, we exchanged vows, kissed, and shed tears, as a lesbian judge we knew sanctified our union. Chicago mayor Rahm Emanuel and Illinois governor Patrick Quinn gave rousing speeches before a jubilant crowd. A handful of people behind a protective fence heckled the proceedings, predicting the end of the world, but everyone ignored them. Some even took selfies with them to commemorate our victory.
At the end of May 2014, only a few days before our marriage, I’d turned sixty years old. For more than thirty years I’d been dealing with HIV/AIDS. So much had changed, and not only in how we managed HIV infection. Although 1984 had looked nothing like George Orwell’s dystopia, 2014 looked nothing like 1984, at least in terms of American society’s perceptions of the LGBT community. Even the term LGBT (or later LGBTQ) had no resonance in 1984. At that time we belonged to the caste of untouchables. Thirty years later more than half the country supported same-sex marriage. It’s not a stretch to claim that without AIDS, same-sex marriage might not have come to pass as soon as it did. By bringing so many well-known, talented, and influential people out of the closet, AIDS paradoxically humanized gays and lesbians. AIDS didn’t accomplish this feat alone, but it was an instrumental factor, especially after it ceased to threaten mainstream America and was transformed by the miracle of modern medicine into a chronic and manageable infection.
But I didn’t marry Gavin. In 2007 Gavin had split with me after nearly a quarter of a century. The rupture caught me off guard. There’d been no lengthy battles or secret affairs, just the usual disagreements between two people who live together for a long time. One morning as I was drying off in our water-streaked translucent shower stall like a naked specimen in a museum diorama devoid of props, Gavin made a pronouncement that, like my decision to join Tom in medical practice in 1984, altered the trajectory of my life. He sat on the ledge of the bathtub in a pose that reminded me of August Rodin’s famous sculpture The Thinker. Our bathroom was capacious, half the size of our bedroom—my mother joked that she could live in it—and glowed in morning light that filtered through a wall of glass block and a large skylight. Moving both hands decisively to his knees, but looking at the marble floor, he announced that he was having dinner with a mutual friend that night. Ordinarily the announcement wouldn’t have been a big deal, but the tone of his voice suggested something more ominous.
“Am I invited?” I asked.
“No,” he said.
“No? That’s really rude,” I replied.
After a pause during which several emotions flashed across his face in that soft, diffuse light—sadness, anger, and finally defiance—he said, “I’ve rented an apartment.”
“An apartment?”
“Yes, an apartment. I’ve leased it for a year and I’m moving out.”
The friend he was having dinner with had helped him find it. It was several miles north on the lakefront, not far from his office, in a building that was as ornate as ours was contemporary.
“You should know I’ve been unhappy for fifteen years,” he said.
“Fifteen years?” I said.
I felt my lip twitch upward and eyes squint with incomprehension and confusion. Who is this person? I wondered. I stared at him in bewilderment, as if he were a doppelgänger who’d commandeered the body and mind of the man I’d slept beside nearly every night and shared nearly every day of my adult life.
“Wow, that wasn
’t my experience,” I said in a near whisper. “Overall, I’ve been happy.”
Suddenly I grasped that my happiness had been a joyride for one and Gavin’s companionship an illusion. I was overcome by an odd sensation, like flying through clouds and seeing nothing but a billowy void while searching for some recognizable object to latch on to and orient me. Although it seemed that I was moving, nothing on my body moved except the water that dripped down my face, arms, torso, and legs. How could two people have completely different experiences of a relationship? I asked myself. The answer, which Gavin didn’t provide, was too painful for me to contemplate. Instinctively I wrapped a towel around my waist to protect something I never thought needed protection, my soul—or however one characterizes one’s persona—as manifested by my naked body. Standing before him in the glass box, I felt ashamed, even ridiculous, in my awkward vulnerability, as if we’d just met and I was being judged, and not favorably.
Mystified, I asked if he’d considered couples counseling. No, but he’d made up his mind after several sessions with his own therapist. I immediately hated his therapist and the friend who colluded with him. I accused him of having an affair with the friend at the encouragement of the therapist, but he shook his head vehemently in denial. He got up without looking at me, refused further discussion, and walked out of the bathroom. I listened to the receding footsteps, click-click-click, on the wood floor in the hallway, then the galloping taps as he descended three flights of stairs and the faint whoosh of a shutting door. That was that—twenty-four years vaporized in five minutes.
A month passed before he moved out, and those were days full of awkwardness. Neither of us knew how to behave toward the other. What conversation passed between us centered on the banalities of life and steered clear of the obvious topic. He might have left sooner had he not suffered a heart attack. The decision to leave me had been more stressful than he let on or I imagined. It struck as he was traveling to visit his sister in southern Illinois. While pausing at a rest stop he developed crushing chest pain, shortness of breath, and drenching sweats and felt nauseated and faint. Frightened, he called me and described his symptoms. Even though I was mad as hell at him, the heart attack shocked me. I urged him to go the hospital immediately, but he decided to go to his sister’s home instead. For two days he languished in bed, too weak to move. After returning to Chicago, he spent a week in the coronary care unit at St. Joe’s. Every evening I sat at his bedside as if we were still partners before his discharge to our house, where I hovered over him and hoped that somehow he’d change his mind about leaving me. Three weeks later, after an argument about the future of our relationship, he told me that he felt that he was under my thumb. I didn’t understand what he meant; he didn’t explain. In anger I replied, “The thumb is lifted. You’re free. Now go to your apartment.”
A period of darkness followed. Not only did I grieve the loss of Gavin’s love, but I also missed his camaraderie. As physicians in the same field, we frequently discussed interesting or difficult cases in our kitchen or bedroom as if attending an informal morning report or Grand Rounds, or vented our frustrations with cranky patients and skanky HMOs. Both our families had embraced us as a couple, and we shared most of our friends. We’d also spent more than twenty years exploring the world together, traveling to six continents and places as remote as Timbuktu and the Komodo Islands—although a late remark that he’d sworn off Third World countries and regions colder than seventy degrees should have alerted me to a deep dissatisfaction. Six months before the breakup, he had exploded in uncharacteristic rage when I chided him for forgetting to book time off for a weekend in the Southwest. The outburst took me aback because he’d never behaved that way toward me before. Three months later, on a trip with eight friends to the south of France to celebrate his fiftieth birthday, he sat as far as possible from me at the communal dining table, rode in a separate car on excursions, and hardly spoke to me. Although we slept in the same bed, he came to bed late, avoided my touch, and turned his back toward me. It was a display of contempt that puzzled me and deeply hurt my feelings. I didn’t raise the issue at the time, and I didn’t confront him when we returned to Chicago. I wished it away, not recognizing his behavior as another warning sign of profound discontent. How ironic that as doctors we could bring up some of the most difficult subjects imaginable with our patients yet avoid far less monumental ones with each other. The ones that counted in our personal lives were the ones we shrank from for fear of conflict. We both hated conflict.
As I reflected on our relationship, it became clear that tiny seismic disturbances over twenty-four years had created cracks that I never noticed, and the building one day crumbled under the force of its own weight. I wondered when things had begun to fall apart. If it was fifteen years back, as Gavin said, that was 1992, the height of the AIDS epidemic, but also the year one of his brothers died at the age of thirty-eight of lung cancer. Gavin had suffered a number of other losses in the intervening years: Bob, a fellow family practice resident, of AIDS; his closest friend from medical school, C.R., of encephalitis in 2000; his father’s wife and then his father; his mother; his oldest sister. These deaths were earth-shattering for him, though as people do, he seemed to recover from each after a suitable period of mourning. I wonder if he had perceived me as distant at those times. I’d like not to think so, but, once again, it wasn’t something we discussed. As late as November 2006, when we traveled to Italy with his sister and her husband, he seemed to enjoy my company. We made plans for the future. Never for a moment did I think our relationship wouldn’t last a lifetime.
Something changed in the final year. What that was I could never truly know because Gavin became as inscrutable as Bartleby the Scrivener, adamantly refusing to discuss the reasons for the impending breakup. Every time I brought up the subject, he rose as if catapulted by a spring and threatened to leave the room. My mind spun; my jaw clenched; a weight compressed my chest. His reaction to my probing evoked a kaleidoscope of conflicting feelings. I could only speculate on his motives, but speculation is one-sided and one half of a reality.
I asked Tom not to tell anyone about the breakup, but like King Midas’s barber, who whispered into a hole inhabited by the mountain god Echo that Midas had an ass’s ears, Tom could never keep a secret. Within days, word of our split spread, and I lost control of my narrative. Friends and acquaintances plied me with questions and offered their sympathy. When one remarked, “We all held you both up as a model for the gay community,” I felt like a failure, for in my imagination I had held myself up as a model in a microcosm of humanity where relationships rarely lasted long and monogamy seemed the exception rather than the rule.
Thank goodness for my practice, I thought at the time. My patients’ illnesses and concerns provided welcome distractions from my own sorrows. I listened to them with greater sympathy and was less inclined to rush to judgment, even if their worries were disproportionate to their symptoms. Yet I found it ironic that after conversing with, examining, and counseling a score or more people each day, fielding dozens of phone calls, and answering an equal number of emails, I’d be overcome by loneliness each night in a house with too many rooms for one person. The telephone there was silent, and the only mail I received was an endless stream of solicitations for charitable contributions and unwanted magazines like American Cheerleader and Boy’s Life, courtesy of the American Academy of Family Physicians, which had sold my name to advertisers. My main solace was a blind and feeble geriatric dog, Fiona, who survived for nine months after the breakup. I had to pick her up to lie next to me in bed, a comforting presence but not a substitute for a lost love. While I grieved and remained immobilized, Gavin moved forward on a new journey from which I was barred.
A painful year passed before a handful of friends encouraged me to move on. For the first time since 1983, I faced two daunting issues: finding another partner and avoiding HIV. Although I’d been immersed in HIV medicine since the beginning of the epidemic, HIV had cea
sed to be a personal threat after discovering that Art, who’d died twenty-three years earlier, hadn’t infected me. Since that time Gavin had been my only sexual partner. The dilemmas confronting my HIV-negative single patients now became my dilemmas. If my patients reflected the gay community at large, 20 percent of gay men in Chicago had HIV/AIDS. Perhaps if a medication had been approved to prevent infection, I’d have been less concerned, but no such medication had yet been proved to be effective in 2008.
I knew you couldn’t get HIV from kissing and that condoms worked, but how would I really feel about an HIV-positive partner? The prospect made me wary, not because I worried about caring for a sick person—that’s the usual destiny of one of the partners in a long-term relationship—but because I didn’t want HIV. Over the years I’d witnessed a number of different story lines, from abject fear of HIV leading to a life of celibacy to a cavalier disregard of a partner’s HIV status. I fell into a gray zone somewhere in the middle but more toward the fear end of the spectrum than the cavalier. Science and irrationality warred within me, and it wasn’t clear which might dominate.
Although transmission of HIV from oral sexual contact was uncommon, it wasn’t impossible. Sometimes people bleed from the gums or harbor sores like herpes or syphilis, which increase the risk. I also knew that some people lie about their HIV status. Years passed before one of my patients admitted to his lover that he was infected with HIV, and this was only after his lover discovered through a life insurance examination that he himself was HIV positive. When confronted, my patient turned the tables. “You never asked me,” he said with a callousness that left both the lover and me momentarily speechless. Others are afraid to disclose their status because they fear that word might spread or that a potential sex partner will reject them. It’s hard enough developing intimate relationships; HIV makes it harder.
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