Plague Years

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Plague Years Page 22

by Ross A. Slotten, MD


  Barhopping wasn’t an option for me. I knew too many people in the Chicago gay community as patients. On the few occasions that I’d gone to Sidetrack, Hydrate, Big Chick’s, or Roscoe’s with out-of-town friends, the patients I encountered were friendly but guarded. Those on the prowl retreated like lions caught in the act of stalking prey. Others sought medical advice, not certain what else to do or say. In such situations I became self-conscious because I too had to maintain my dignity. Cruising or getting smashed—not things I would usually do—was out of the question. For the same reason—and the fact that I’m slow at embracing new technology—internet hookup sites like Grindr and Scruff or their equivalents at the time didn’t interest me.

  I turned to the more anodyne websites like Match.com. To my dismay, a good number of matches there also turned out to be my patients. They weren’t looking for me specifically or I them, but the site matched us, which I guess isn’t surprising. The men I didn’t know whom I contacted disappointed me. My salvation was Match.Tom: in 2009, two years after Gavin left, Tom introduced me to Ted, who sat with him on the board of a charitable organization. Although Ted had been a patient of Tom’s for a decade, I’d never seen or spoken to him. Socially our worlds overlapped, but somehow our paths had never crossed. At first I didn’t want to be introduced to him, since he is fourteen years younger than I. “Oh, he’s an old soul,” Tom said. “Don’t worry about the age difference.”

  I was wary. But after another Match.com failure—an awkward dinner with a man who looked like an elderly President Nixon and had far less personality—I called Ted and suggested meeting for coffee. If we didn’t hit it off, I thought, I could easily escape. Ted insisted on dinner. Reluctantly I reserved a table at a restaurant in a sleek new hotel not far from the long-ago location of Alfie’s, where Art and I’d first hooked up. The neighborhood had become gentrified and fashionable, couples pushing baby carriages and women in mink and heels having replaced men in leather chaps or tight-tight jeans.

  When I arrived, I surprised a colleague, an infectious disease specialist and another pioneer in the fight against AIDS, who was having a drink with a woman who wasn’t his wife. He shifted uncomfortably as we exchanged a few pleasantries. I went to the bar and stared at my cellphone, trying to lower my anxiety level with a glass of wine. Ted had called me to apologize for being late—traffic was heavier than he’d anticipated. He soon walked in at a rapid clip, and we went into the dining room.

  Physically, Ted was my type—shorter than I, shaved balding head with a neatly trimmed salt-and-pepper beard, sparkling green eyes, and a warm smile that lit up a handsome face. He wore a sport jacket over a loosely buttoned white shirt with dark chest hairs poking out and spoke in a pleasing tenor voice (he’d studied opera in college). It was a conversation of Wagnerian proportions, lasting six hours, until the weary staff kindly chased us out. A few days later, when a restaurant server we both knew clapped her hands in approval after asking us if we were dating, I realized that I could fall in love again. From that day forward we were inseparable. The news prompted my mother to note that I’d “robbed the nest” and wonder, “What’s with you and Irish men?”

  By this time my relationship with my mother had shifted from evasiveness to full disclosure. We’d grown closer after my father’s death in 2002 at the age of seventy-seven. His death had come unexpectedly, from complications of diverticulitis. Up to that point he’d been in excellent health. Shortly before my father’s hospitalization my mother underwent hip replacement, a procedure she’d put off for months despite great pain and difficulty walking. It had been at my father’s urging that she finally agreed to have surgery. She bled profusely afterward and was confined to bed for weeks. While she was in the hospital recuperating, he’d spent every day and evening at her bedside. Now she could barely be with him during the greatest crisis of their fifty-two-year marriage. It was heartbreaking when with both hands clutching her cane as she stood at the foot of his hospital bed gazing at his unresponsive body, she whispered a tender farewell.

  My mother’s emotional dependence on my father had been greater than I’d imagined and exposed a vulnerability I’d not seen before. In reaction to his death, her weight dropped to 80 pounds from 95, and at 4 feet 10 inches she’d lost her dynamism and appeared frail. A gust of wind could have thrown her to the ground, breaking the hip that she’d already broken twice. Her grief lasted a year and a half. After that her voice regained its familiar strength, although she never regained the weight. That vulnerability evoked an instinctive desire to protect her—but she needed no protection and never asked for it.

  When I had announced with embarrassment that Gavin and I’d broken up, her posture changed and attention sharpened, much as mine does when a patient reports a symptom that indicates something more serious than a cold or stomach bug. She wasn’t surprised, she said, noting that it had been “a good run.” It was Mother’s Day 2008, and I’d taken her to brunch at an elegant restaurant in Winnetka, a bastion of white heterosexuality. It’s not clear to me why I chose that moment to tell her, several months after the fact. Perhaps it was the glass of wine that relaxed me or the charming, homey atmosphere (white tablecloths, subdued natural lighting, profusion of spring floral arrangements, and friendly staff)—or the weariness of a fugitive sick of hiding.

  “I never understood why you two were together,” she said without missing a beat, indicating that she’d wondered about the nature of my relationship with Gavin for a long time. But seeing my puzzled expression, she added, “But then I never know why any two people are together.” She named other unlikely couples in our extended family.

  When Ted and I celebrated our civil union in 2011, my mother attended happily. She got along well with Ted’s mother, chatting at length with her about who-knows-what, later confiding, “I really like your mother-in-law.” She displayed signs of support in smaller ways too, like refusing to eat at Chick-fil-A because of its chief operating officer’s antigay remarks and opposition to LGBTQ rights, and sending a birthday card to Ted with an “Equality Forever” stamp on the envelope. She became a true friend. But she always had been a true friend, a fact that had taken decades for me to admit. In the interval I’d expended a lot of energy limiting her to the outskirts of my life, in part because it took me forever not to feel ashamed about being gay.

  I reflected on the good relationship I had with my mother during my childhood, before the difficulties of adolescence and beyond. One of my earliest pleasurable memories dates to the age of five, when she turned me into a butterfly for Halloween at my request. She’d sewn wings onto a bodysuit and created a small hat or headband with antennae on it like those on a TV set of that era. Kneeling, she made adjustments holding the pins in her teeth, like the daughter of a tailor that she was or the wardrobe designer that she aspired to but would never be. It was a weird costume for a little boy, but everyone in the neighborhood knew me as the kid with the butterfly net who chased every butterfly he caught sight of. She also helped me with art projects, because I shared a talent for painting and drawing with her, and endured hours of tedious piano practice when I played the same sonata repeatedly until I got it right, even when it drove my three brothers crazy. It was not her idea for me to play the piano. It was something I asked to do, and she gave me her full support. As a child, I did my utmost not to disappoint her. And for the most part I didn’t. But it had been that fear of disappointment that prevented me from having a more fulfilling relationship with her from adolescence onward.

  Dealing with my mother’s death wasn’t as difficult as I expected, not because I’d accompanied so many patients on their death marches but because my mother was remarkably brave, clear-headed, and unsentimental about her mortality. During the last six months of her life, she battled a rare form of leukemia. I called to check on her every day, sometimes two or three times. I’d awaken in the middle of the night drenched in sweat, worried about her health. But it turned out that I was more worried than she was. After a
bout of severe vertigo that provoked a fall and laceration of her scalp, she joked as I drove her to the hospital, “You prepare for the worst, and when the worst happens you don’t know what to do.” I think that was true. In fact, the only reason she had told me about the vertigo was that I called her the following morning. It wasn’t the first thing she mentioned in our conversation either. She didn’t want to bother me, she said when I asked why she hadn’t called me after the fall. There were times when she phoned about something trivial, as when she accidentally brought home an orange she forgot to pay for from the grocery store. She didn’t want anyone to think that she was shoplifting. But when she had a dangerous fall, not a peep. When offered chemotherapy, she told her doctor with the utmost sincerity not to waste it on her but to give it to young people who needed it more.

  My mother died suddenly, one month shy of her eighty-sixth birthday, in November 2013. One afternoon she’d lunched with a relative. The following day she developed pneumonia but refused my offer to take her to the hospital or prescribe antibiotics. The next day she didn’t answer the phone despite multiple calls. I knew what this meant and asked Mary, my business manager, to cancel my patients that day. It was a dreadful moment when I unlocked the front door of her house and found her dog Chip, a Maltese the size of a large rabbit, waiting for me in the foyer, tail wagging with uncertainty. She wasn’t in the rocking chair or on the couch in the living room, where I’d left her the day before. NPR didn’t blast from the radio in the kitchen. The house was eerily silent, the habitat of ghosts, the only sounds my breathing, Chip’s panting, and the soft thud of my shoes as I trudged up the carpeted stairs to her bedroom, fearing and knowing what I’d find.

  Somehow she had made it up those stairs. It was a peaceful, if surreal, scene. Dressed in her nightgown, she was lying half in bed, half out. Her left index finger supported her chin, and her eyes stared into space. She appeared frozen in time, lost in thought, her face pallid and her lips blue-violet. I phoned Ted, who came within the hour, at which point I broke down. My youngest brother arrived a bit later and had to be coaxed into the bedroom. I phoned my two other brothers in Georgia and Florida, who were shocked and struggled to understand my awkward descriptions of the cause.

  I’ve often thought about how differently my mother’s death was handled from that of many of my patients. In the 1980s and 1990s, the partners of my AIDS patients who died at home endured interrogations by a detective, although when the presumptive cause of death was revealed, the detective and paramedics backed off and the coroner badgered me not to demand an autopsy. To the investigator it wouldn’t have mattered if the partner had murdered his lover: fear of the disease—or a moral judgment passed on the deceased—trumped all other considerations. On several occasions I didn’t give in and refused to sign the death certificate without a definitive diagnosis, especially for a person who was HIV positive and not yet diagnosed with end-stage AIDS, at which time death would have been expected.

  I also realized that any number of funeral homes would have accepted my mother’s body. More than two decades earlier, funeral homes had been quite wary if the dead person was a single man of a certain age residing in a certain zip code in a certain city. In the late 1980s one funeral director threatened to have my license revoked because I’d failed to inform him beforehand that the person he just embalmed had been an AIDS patient. Had he known, he said, he would have refused the body—a remark that infuriated me. It was, after all, the era of universal precautions, when healthcare workers (morticians included) were expected to adhere to strict guidelines on how to deal with the body fluids of anyone, dead or alive, HIV positive or negative. In deference to the family’s request, I’d listed lymphoma as the primary cause of death but omitted AIDS as a secondary cause on the death certificate, which at the time could have become part of the public record. Although I was guilty of omission, I’d assumed that the family had made the director aware of the diagnosis when he accepted the body, but they had not. Nothing I said assuaged him. Fortunately for me, we were on the telephone—otherwise he might have punched me. His complaint to the Department of Professional Regulation triggered a brief inquiry, and for a year I was monitored before the case was dropped. It had been just a minor nuisance.

  My parents’ decision to forgo funeral services was a relief to me, and my brothers didn’t disagree. Having witnessed so many deaths professionally, I dreaded funerals. I understand their necessity, and for those with religious convictions they offer comfort at a time of great sorrow. Some of the services I attended moved me to tears not because I derived any solace from the pastor or rabbi but because I just felt sad for the loss. On such occasions I wished I shared the congregants’ faith in God or belief that there is a higher purpose for our existence. But death on an unimaginable scale, sometimes from disease and sometimes in the name of some religious or political ideology—the apparent hallmark of the twentieth century—had wrung any vestige of piety from my soul.

  Over the years death has obsessed me, and increasingly as I grow older and continue to ponder the purposelessness of life. We come, make our brief mark on the world, and vanish—that’s a cliché but a simple truth. So many lives lost to AIDS, I thought, a surfeit of grief that almost negated my ability to experience grief at all. When someone dear to me dies or I contemplate my own mortality, I often think of the wry yet profound (and depressing) observation in the Portuguese novel The Year of the Death of Ricardo Reis. After one dies, a poet tells the novel’s protagonist, there is a period when one can roam the earth and put things in order. “The usual period is nine months, the same length of time we spend in our mother’s womb,” the poet says. “I believe it is a question of symmetry. Before we are born no one can see us, yet they think about us every day; after we are dead they cannot see us any longer and every day they go on forgetting us a little more and, apart from exceptional cases, it takes nine months to achieve total oblivion.”

  Epilogue (2016 and Beyond)

  In late May 2016, a twenty-four-year-old man named Allen made an appointment to see me for what he thought was an ulcer. When I entered the exam room, I knew at once that he suffered from something more serious. Ringlets of blond hair looped over a bony forehead like branches of trees over a receding shore. The fluorescent light glinted off his brow, cheekbones, and nose and cast his hollowed orbits in shadow. His clothes hung loosely on a thin frame. A wave of dread passed through me, bringing back memories of the old days when young men like Allen sat pensively in my waiting room or languished in the beds of 11 West, now long repurposed.

  It had been almost a decade since I’d cared for someone with advanced HIV infection, and I hadn’t lost a patient to AIDS since 2004. Once a master of the art of HIV medicine in the era before HAART, I’d almost forgotten how to treat opportunistic infections. Now I would need the internet to guide me. In 2016 most of my patients with HIV were vigorous and healthy, their virus kept in check by powerful medications. The others were afflicted with maladies that had nothing to do with HIV, such as diabetes, heart disease, or an enlarged prostate. Colds were colds and flus were flus, a purple splotch a bruise and not KS. If I saw a yeast infection on the back of someone’s throat, it was due to a steroid inhaler to control asthma and not a deficient immune system. If a patient complained of a bad headache, its cause was muscle tension or a migraine, not a weird fungal infection inflaming the meninges, the delicate membrane covering the brain, or a brain swollen by a tumor. I thought of that aphorism from medical school: when you hear hoofbeats, think horses, not zebras: common diagnoses first, oddities last in your differential diagnosis of symptoms. Instead of five to ten per month, perhaps two or three of my patients might die each year, and that would be from diseases that usually kill people, like cancer or coronary artery disease. In thirty years I’d come full circle: except for the fact that the majority of my patients were gay men, I now had a typical primary care practice.

  Without voicing a concern—Allen was new to my practice and I
didn’t want to scare him—I introduced myself and shook his cool hand, then settled onto my stool, opened my laptop, and began to record his story. My fingers were poised over the keyboard, ready to document his words verbatim. I thanked my seventh-grade typing teacher for giving me skills I never knew I’d need fifty years later. With pointed questions I tried to keep Allen on track, because people ramble when talking about their symptoms, giving you information they think is important while you try not to interrupt too often to get the information you need to make a diagnosis. After breaking up with his boyfriend three months earlier, Allen said, he became depressed, stopped eating, and lost ten pounds. But four weeks later he was back in Boys’ Town in search of new conquests, the old lover forgotten. Six weeks or so after the breakup, he contracted “food poisoning.” His stomach felt on fire and he had severe diarrhea; that lasted just a day, but he had never fully recovered. Since that episode he’d lost more weight, felt bloated, and continued to have bouts of loose, watery bowel movements. A few hours after downing three shots of whiskey one Saturday night in a gay bar, he vomited multiple times. That’s when he decided it was time to see a doctor. Friends referred him to me.

  Before getting sick, Allen had felt as well as any twenty-four-year-old young man should and weighed 160 pounds. Now he weighed only 139. The last doctor he’d seen was his pediatrician before he left home for college at the age of eighteen. An HIV test performed earlier in the year at Steamworks, a gay bathhouse, had been negative, he said. He’d never contracted any sexually transmitted infections, and he denied topping or bottoming anyone recently, which would have put him at risk for HIV. I doubted his story about safe sexual practices but said nothing. Unless you’ve known them for a long time, people fudge the truth about their sexual activity. There’s a great deal of denial about what really happened in the backroom of a bar or in the dark recesses of the bedroom. Often drugs or alcohol clouds memories.

 

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