Plague Years

by Ross A. Slotten, MD

  Our apartment in Old Town was on a tree-lined cul-de-sac, a mile east of my office and two miles south of St. Joe’s. Most of the buildings were three- or four-story brick structures with imaginative facades artfully refashioned in the 1950s. The building we lived in had an arching entrance, bay windows, stained glass, friezes, niches with statues, and zigzagging passageways. Once a series of artists’ studios, it was an oddly harmonious melding of art deco elements with those of a medieval Tuscan village. In front, a hodgepodge of inlaid granite and ceramic tiles—not a cement sidewalk—buckled from the serpentine roots growing underneath. It was a magical place on a magical street in an otherwise drab neighborhood. On this night, however, my apartment seemed more like a prison than an oasis.

  As I came in, Gavin was already preparing dinner, and I could hear the clinking of utensils and pots. The nooklike kitchen had a serviceable oven, ancient refrigerator, cracked porcelain sink, and crooked, rotting cabinets, the only features that tainted the charm of the apartment. Although I felt nervous and my heart raced with anxiety, I hugged and kissed Gavin without any visible trace of distress. But I didn’t bother with the usual end-of-the-day banter. Instead I blurted it out: Art had AIDS.

  Gavin extricated himself from my embrace. “Who is this Arthur Sims, and why has he entered my life?” he said, glaring at me as if I were a dangerous stranger.

  He paced the apartment, barking short responses to my questions and comments, tossing aside my attempts to console him, which made me feel alone and ashamed, for I needed consolation too. He was so distraught that I feared he’d pack his bags. I apologized repeatedly and struggled to soften the blow, but when you think you’ve accidentally poisoned the person you love, apologies are useless.

  We eventually picked at our dinner in silence, the sharp sounds of cutlery and dishes on the tile piercing the air like shards of glass penetrating skin. My stomach churned like an acid-spewing caldron. When I looked up from my plate, Gavin turned away, staring at nothing and frowning. I gathered the dishes, glasses, and utensils and cleaned up the kitchen. We passed a sleepless night on opposite sides of the bed; even sedatives proved worthless. I would have swallowed the whole bottle to erase the horrors of that day, but I wasn’t suicidal.

  I remembered my first AIDS scare in November 1983, when I had a fever to 104, bone-breaking aches, and teeth-chattering chills that lasted two days. My white blood cell count was very low, like that of someone with an immune deficiency disorder. But then I broke out with a rash that covered me from head to toe—chicken pox! Or the time when I had pains in my fingers, wrists, shoulders, knees, and hips that I attributed to the toxic fumes Art and I had sprayed to get rid of the cockroaches in his apartment. That turned out to be an unusual manifestation of hepatitis B—I never became jaundiced or had dark urine. The hepatitis virus and the antibodies my immune system generated against it combined into microscopic crystals in my joints—serum sickness was the medical term. I’d had pneumonia also, back in late May 1981 just before beginning my internship. On graduation day I was so ill that the ceremony was a haze. Although I believed wholeheartedly in the precepts of the Hippocratic Oath, I had no recollection of taking it. Thank God I didn’t see the CDC’s report about a new disease in five homosexual men in Los Angeles until I’d fully recovered. Although I bounced back from all those relatively benign problems, that didn’t mean I wasn’t a medical time bomb.

  The next morning, dragging ourselves to shower and shave, Gavin and I barely spoke to each other. Of course Art was in a worse predicament than either of us. Later that morning, Tom told me that one of the medical residents had informed Art of his diagnosis without consulting us or any other attending physician.

  “You have cryptosporidium,” she said to Art. “But don’t worry, you will be OK.”

  Art, horrified, knew that wasn’t true.

  We were indignant at her impertinence and insensitivity. “I don’t think she has any idea what the presence of cryptosporidium means,” Tom said. It was clear that she meant no harm. Later we would educate her about the nature of opportunistic infections and their relationship to AIDS. But it wasn’t her place to present a diagnosis of such gravity to a patient—even though residents are often the people called on to make life-and-death decisions in the hospital, such as “running a code” during a cardiac arrest. While we attending physicians poke our heads into a room for a few minutes and then disappear into an office, usually off site, the interns and residents remain in the hospital all day and frequently all night, dealing with scores of patients with all sorts of problems. Most residents are self-confident—which they need to be to win the trust of patients—but they can also be arrogant, lacking humility and sensitivity because they’ve rarely confronted their own failings. If a case goes badly, it’s not their responsibility but that of the primary care physician or surgeon. They behave like know-it-all teenagers. Not that many years earlier I’d been like that too.

  My indignation at what had happened temporarily shoved aside other emotions, but I suffered the next night and more, tossing and turning, torn by fear, anger, and resignation. I couldn’t embrace Gavin, because he wrestled with the same feelings. For several days, touching him would have been like touching a cactus. But the needles gradually dropped off, and we became affectionate again. He forgave me, acknowledging that I wasn’t at fault. We were both gay, both at risk for HIV/AIDS, and neither of us had intended to harm the other.

  A few mornings after Art’s diagnosis, I mustered the courage to visit him again, not as a doctor but as a friend, worried about how he was coping with his diagnosis. I was surprised to see his boyfriend, Max, in a chair at the bedside, crying. I didn’t expect anyone else to be in his room at that early hour. Attached to an IV dripping at a furious rate and with a commode positioned strategically nearby, Art was despondent, staring at the floor and ignoring my greeting. He hadn’t really believed that he had “the Big One.”

  Max wanted to talk. I quietly beckoned him to follow me. I guided him down the hallway, beyond Art’s earshot. It was a typical morning on the ward. Most of the interns and residents were at morning report, yet the ward bustled with activity. Maria, one of the custodians, mopped the floor while another dried and buffed it to spotlessness. She wore a mask and gloves as she carried a plastic bag full of garbage out of a patient’s room. Two nurses slowly pushed carts down the hall, dispensing medications. Hairnetted kitchen workers extracted breakfast trays from a large metal cabinet, the food made less appetizing as its aromas blended with the faint stink of the ward. Several attending physicians like me were also making rounds. No one paid attention to Max and me as we stood in the hallway, almost within kissing distance.

  “Is he going to die?” Max asked.

  It took me a few moments to respond. I hadn’t come to Art’s room as a doctor, because I wasn’t Art’s doctor. I was his ex-lover, still roiled by conflicting feelings. But Max’s unexpected presence caught me off guard, and his question jarred me back into that professional role. I stiffened my stance and switched mentally to doctor mode to answer him in the most compassionate—and emotionally distant—way that I could.

  “Well, I don’t know anyone who has survived,” I said, “but I would never say anything’s impossible.”

  “How much longer does he have?”

  “I don’t know. No one can say.”

  “Isn’t there some medicine you can give to make him better?”

  “We can treat some of the problems, but we can’t cure the basic problem. There’s no known cure for the problem with his immune system.”

  He wiped tears from his eyes.

  “He thinks the world of you, Ross,” Max said with such genuine sincerity that I was deeply moved. It occurred to me that I was no longer jealous of him, and I felt a pang of remorse for having once resented him. He was a loving, kindhearted person. If he feared for his own life, he didn’t show it; he was concerned only with Art’s health.

  “Take good care of him,” he
said. “Please let him be able to go home.”

  I assured him that we would try our best, and I promised to relay the request to Tom.

  Two weeks later, on July 4, I was awakened from an early-afternoon nap by a call from the hospital. The nurse told me that Art had had several episodes of “V tach,” a potentially fatal rhythm disturbance of the heart, but had responded to firm thumps on his chest and a medication that restored his heart rate to normal. He was also on a drug to sustain his blood pressure. Relieved that he was still alive, I was perplexed by the call.

  “Why are you calling me?” I asked. “Hadn’t Dr. K. seen the patient?”

  “No,” the nurse said. “Your answering service said that you were the one on call.”

  That was true. When we opened our practice a year earlier, Tom and I had decided to alternate being on call by week. From Monday to Friday we rounded on our individual hospitalized patients. After the office closed for the day or on weekends and holidays, the one of us on call managed all our patients, making rounds and fielding emergencies. It was an arrangement that we felt increased the sense of personalized service, to distinguish our practice from others.

  While technically I was on call this day, Tom had agreed to always manage Art’s medical care after he was hospitalized, removing me from a potentially awkward situation. But Tom had forgotten our agreement. And now he wasn’t home. I hadn’t bothered to go to the hospital that day because I had no hospitalized patients—this was still in the early days of the AIDS crisis in Chicago.

  I quickly showered and shaved, muttering with annoyance, calling Tom names that I would never have dared say to his face. Because I didn’t have a car and considered it a waste of money to take a taxi, I walked. Ordinarily I walked everywhere, even on the most frigid winter days, and usually enjoyed it. My path to the hospital led me down our magical street and through Lincoln Park, past the zoo, conservatory, lagoon, and other scenic landmarks. Today was hot and humid, though, and I arrived at St. Joe’s thirty minutes later irritable and soaked in sweat—but that might have been anxiety as much as humidity. I didn’t know what I’d find or how I’d react when I saw Art.

  I headed to the doctor’s locker room and rinsed off my face with cold water, but my cheeks and forehead were still flushed and my hair was wet and disheveled. Once I cooled down and composed myself, I donned my gray coat, checked my pockets for their instruments, and rode the elevator alone to the fifth-floor intensive care unit. As soon as I entered, the nurses pounced on me with questions about Art’s code status. Was he or was he not a “no code”? Art had signed a living will, which indicated that he didn’t want extraordinary life support measures in the event of a cardiac arrest, but now he’d apparently changed his mind. I waved them off with annoyance but then calmly told them that I needed time to assess the situation. Inside I was furious that this decision had fallen into my lap.

  I sat down at the nurse’s station and browsed through Art’s chart, attempting to piece together the events of the preceding two weeks. In that interval, Tom and I had barely discussed Art’s case. A few days after my last visit, Art had developed a fever and shortness of breath. Tom consulted Dr. R., our pulmonary specialist, who whisked Art to the operating room and probed his bronchial tubes to obtain tissue samples. Those revealed two infections, PCP and a fungus called histoplasmosis. Alone, each of these infections would have indicated AIDS. Now Art had three opportunistic infections, two of which were difficult to treat, the other untreatable. It was crystal clear to me at that moment: his death from one or all three of these organisms was inevitable.

  A floor nurse indicated in her July 3 notes that she’d discovered Art blue, pulseless, and unresponsive and called a code. The code team of several residents arrived quickly and was able to revive him with a flood of IV fluids and the application of an oxygen mask to his nose and mouth. There was no need to intubate him and place him on a ventilator or give him cardiac stimulants. He was transferred to the ICU.

  Some time later the nurse who’d ordered the code admitted to me with shame and embarrassment that she’d been too afraid to give Art mouth-to-mouth resuscitation. She only pressed on his chest until the arrival of the code team. I told her not to feel guilty. I’m not sure how I would have reacted in a similar situation, performing the most distasteful part of CPR on a patient who was terminally ill with a dangerous and potentially contagious disease.

  “It’s unfortunate you arrived so soon,” I said. “Nature should have been allowed to take its course.”

  The nurse nodded in agreement. But it was a moot point. Even if Art had been discovered lifeless hours later, when successful resuscitation was no longer possible, it’s likely that the code team, abandoning common sense but claiming to honor the patient’s wishes, would have gone further and intubated him, shocked him, and plied him with medications to restart his heart until Tom or I ordered them to cease.

  For the rest of the day and night, Art remained in a “wakeful coma,” eyes roving senselessly, arms and legs flailing aimlessly, unable to be roused or follow simple instructions such as raising his left hand or wriggling his right toes. Unexpectedly, he awakened the next morning and appeared to be behaving normally, although the nurses remarked that his short-term memory seemed impaired.

  I approached his room with trepidation. He was a living ghost, stirring up a miasma of conflicting memories. Even in my darkest hours when I hated him, I never wished him dead. Ignoring a nearby cart loaded with protective gowns, masks, and gloves, I pushed open the door. The protection was unnecessary because I wasn’t going to perform any procedures that would have exposed me to his body fluids. Moreover, if he’d already infected me with the AIDS virus, such protection wouldn’t have mattered.

  Art was pleased to see me and waved. I raised a hand in response but felt a momentary shock at his appearance. In only two weeks he’d become skeletally thin. No one had bothered to shave him in the three weeks since his admission to the hospital, and his cheeks were covered in a heavy overgrowth of black hair flecked with gray. A large encrusted sore festered on the left side of his lips. His skin had a gray death tinge. But his eyes, the final glimmer of life in a body ready for the grave, were a clarion blue and warm.

  Looking past the tangle of IV tubes, bags full of futile treatments, and electrical cords, I noted on the cardiac monitor Art’s rapid heart rate but stable blood pressure. A ventilator squatted ominously by the side of the bed, prepared for a full arrest. Outside his window was a view of the park and lake in full summer splendor. When I turned to him and asked if he remembered the preceding day’s events, he seemed bewildered. I explained that he’d stopped breathing but was successfully resuscitated. His eyes widened and his mouth dropped open, as if only now he grasped his mortality and the inevitability of his death.

  “I almost died?” he asked weakly.

  “Yes,” I said, “but I wouldn’t expect you to remember those things. It’s normal to forget that.”

  I asked him if he knew what was wrong with him. Puzzled, he squinted as if trying to dredge up a distant memory. Then he nodded his head as if he’d found the memory, but I realized that he hadn’t.

  “You have AIDS,” I reminded him as gently as possible.

  His face grew long, and he recoiled with horror.

  “I have AIDS?”

  “Yes,” I affirmed.

  “What are my chances of surviving?” he asked after a short silence.

  “You’re unlikely to be cured,” I said.

  “How long do I have to live?”

  “That’s something that only God knows,” I said. “We can only guess.”

  Tears streamed down his face and he began to tremble. I squirmed with discomfort. This wasn’t a conversation I’d planned to have with him. When I left my apartment an hour before, I’d hoped that he was in a coma so that I could zip in and out of the ICU.

  “I don’t want to die,” he said with a sudden burst of emotion.

  “I don’t want you
to die either,” I said, my teeth clenching, my heart twisting, and a suppressed sob constricting my throat.

  The next question was awkward, but I needed an answer. “Do you remember drawing up a living will?”

  “Living will?”

  He had no idea why I was asking the question. He’d forgotten all about a living will. The lack of oxygen had erased certain bits of knowledge and memories from his brain.

  “Do you want to be revived and placed on a ventilator if your heart stops beating or you stop breathing?”

  “Yes,” he replied with such vehemence that I made no effort to dissuade him.

  As we spoke, I bent over and rested my elbows on the guardrail, holding his hand. His fingers were bony and cold, unlike the flesh I’d touched and held years earlier. The situation seemed unreal to me. I tried to repress the memories and pretend he was just another patient, but that wasn’t possible. Then he reached out and patted me on the head. My hair bristled underneath his palm.

  “You’re such a good person and I’m such a bad person,” he said. “I love you and have always loved you.”

  This confession caught me by surprise. I felt myself blush. I’d once longed to hear those words from him, especially on those lonely nights when a simple phone call would have calmed my nerves and wiped away my insecurity. How much suffering they would have prevented! He spoke them only now, in the last stretch of his life, when it was too late. If we’d still been lovers perhaps I would have burst into tears, but my immediate reaction was to wonder whether anyone had witnessed this scene.

  Tom and Gavin were the only members of the hospital staff that knew about my relationship with Art. And beyond the other gay and lesbian staff, no one at St. Joe’s knew about my relationship with Gavin. To be an effective physician, I believed, I needed to command respect, not serve as fodder for gossip. St. Joe’s, no different from any institution, was like a small town where privacy barely exists and everyone knows everyone else’s business. If you weren’t careful you’d wind up on a metaphorical tabloid, the most intimate aspects of your life revealed to the world. A person with a thicker skin and more audacity might have told everyone to fuck off. I still cared.