Plague Years

by Ross A. Slotten, MD

  Now as we bumped along an unpaved road in the Okavango Delta, I tried to dismiss the sadness that overwhelmed me. Neal and I would never grow old together, I thought, sharing our experiences, searching for insights into the mysteries of human existence through another’s eyes. He would forever remain for me the young Neal, frozen as in the photograph that still sits on my bookshelf, a talisman of my past. Decades later his husky voice sometimes intrudes in my mind, in the tone of a philosopher of our young adulthood. The words might remain unclear, but the tone, the spirit, the warmth behind them still resonate. I’d love to mine those tangles of neurons and synapses where so much forgotten remains embedded, if only to return to consciousness the pleasures of our precious friendship.

  I couldn’t shake the image of the bold red bird and Gavin’s superstitious connection of it to Neal. Death was everywhere and unavoidable in Africa—vultures picking clean the stinking carcass of a zebra; the eerie cackles of hyenas as they surrounded, took down, and ripped apart an old cape buffalo; lions roaring over a kill. And then there was the fact that AIDS had started in a remote village in the western part of the continent decades earlier before spreading locally, crossing the oceans, and sweeping around the world, decimating vulnerable populations, gay and straight.

  With those morbid thoughts in mind, in December 1991, shortly after I returned to Chicago and the frontlines of a war, I was inspired to write in my journal:

  I witness the death struggle very day. Unable to intervene, I watch the beast stalk its victims and feel the pain as it sinks its teeth into its thrashing target, as if I were the target myself. The malevolent hunter haunts me. I fear its footsteps in the night and listen for any signs that it’s pursuing me, as if it were outside my tent, calculating how best to reach me, penetrating the thin membrane that separates me from it, finally dragging me out screaming from the feeble defense of sheets and blankets covering my naked body. This is the fascination we have with the great hunters, like the lion, leopard, and cheetah. We identify with both predator and prey, for we can assume both roles. Though in many ways superior, we’re not invulnerable. Sometimes our enemies are invisible to the unaided eye, but as malevolent; or they come disguised in our own persona. We become our own stalkers: predator and prey within the same body, a projection of our fears upon ourselves.

  : 9 :

  Unstoppable Wildfire (1991–92)

  One morning, my Botswanan adventure a receding memory, I received a phone call midway through my exercise routine. I grumbled with annoyance, thinking that I’d had another admission to the hospital; but it was my junior partner C., who in a somber voice let me know that my twenty-three-year-old patient Henry had died an hour earlier. I’d not yet worked up a good sweat and wasn’t audibly out of breath—C. wouldn’t have known that I’d been exercising. Although I feigned surprise, I couldn’t feign sorrow. Another death from AIDS—by now so commonplace for me that a week without a death was an anomaly. One of the commissioners at the Chicago Board of Health, in a backhanded compliment, informed me in 1992 that no one had signed more death certificates in Chicago than I had. That grim statistic sank into some dark hole of my consciousness during the day, surfacing at the most vulnerable moment, in the middle of the night, when sleeplessness unknitted the tightly woven sleeve of care.

  I stuffed the news of Henry’s death down another dark hole, thanked C., hung up, and returned to the rowing machine. During my tedious routine I always tuned the radio to the local classical music station. The phone call had interrupted one of my favorite pieces of music, a Schubert impromptu. I had half-listened to the dexterous pianist during the conversation, which seemed endless but lasted only thirty seconds. To the beat of the spirited music I now rowed harder, hoping to push up my heart rate, no longer thinking about the patient, his lover, family, or my distraught partner.

  How is it that I can be so unmoved? I reflected in a journal entry that evening. [Henry’s] death was routine, as commonplace as another fire or a street murder or a theft. I shouldn’t say I didn’t react. It took an effort not to react. I felt a certain pressure against my emotions; the pressure was light. It didn’t take much to keep the lid on.

  My callousness reminded me of a vignette Tom had once related to me. One of his patients with advanced AIDS had bled into his brain and was on life support in the ICU. Without surgical evacuation of the blood clot, he would die. Uncertain what to do—continue aggressive treatment despite a hopeless prognosis or shift to comfort measures and allow him to die peacefully—Tom called the closest person to this patient, his mother, for guidance. She was about to leave her house to go to the golf course. “Can you call me later, after the game?” she asked.

  I was no less indifferent than that woman, I thought. In medicine, emotion is the enemy of clinical judgment. My mentors had taught me, perhaps too well, to suppress those emotions during the critical decision-making process. That emotional flatness extended to my immediate response to another death. But suppression didn’t equal extinction. According to the Third Law of Motion, every action results in an equal and opposite reaction. Suppressed emotions have to go somewhere. Instead of sinking into a paralyzing depression over the tragic deaths of all these young men, I sublimated my despair in different ways, not all of which were healthy or conscious, deliberative or rational.

  Rushing out of the house early one morning, I forgot my sandwich, which I remembered halfway to the hospital. I didn’t have time to turn back or return home later to pick it up. I felt frustrated with myself. Gritting my teeth in anger, I cursed my stupidity. All sorts of negative judgments about my character assailed me. As I went through a list of my deficiencies, a jolt of rage electrified me, and with one hand gripping the steering wheel I slapped myself hard on the face with the other. It wasn’t like in the movies when someone smacks a person in the grips of hysteria. My slap was a punishment for a litany of transgressions, imaginary or real—a doctor who failed his patients; son who deceived his parents; gay man who bemoaned his homosexuality: in short, someone who disappointed everyone because of his flaws. I was startled, as if an unexpected assailant had assaulted me. I almost cried, not from pain but from pent-up emotion, but I fought back the tears and chastised myself for such an impulsive gesture.

  The heat of the sting subsided, and the fiery red handprint on my left cheek faded into a blush. I glanced in the rearview mirror and wondered if I’d been observed. No one crashed their car or honked at me; passersby hurried to work without pause; I’d not caused any perturbation in the universe. I calmed down, the rage passed, I felt embarrassed and foolish. And then the sensible response came to me: I’ll eat something else, like fruit, from the hospital cafeteria.

  What is it all about? I asked myself later when recording the incident in my journal. Why such lack of self-control? I can’t even tell the psychiatrist about this—it’s too shameful. How I treat myself.

  I’d started seeing a psychiatrist in 1989 at the insistence of Gavin, who worried about my constant state of anxiety. At the time I served on the board of Howard Brown, which was in the midst of a financial crisis brought about by AIDS: the number of new STI cases had plummeted, and the clinic’s primary revenue stream slowed to a trickle. Its future as a viable institution was uncertain. Members of the board, who realized that the clinic had to branch out in order to survive, took over management of day-to-day operations after the executive director resigned. No one wanted this pillar of the Chicago gay community to fail in the face of an existential threat. But to keep the clinic afloat required hours of extra time on top of our full-time jobs. Moreover, I found it impossible to dedicate time to other organizations, critically important as they were, like ACT-UP (AIDS Coalition to Unleash Power), Open Hand, which provided meals for homebound HIV patients, or Test Positive Aware Network (TPAN), a local grassroots AIDS outreach organization. I couldn’t be a doctor caring for hundreds of HIV-infected patients and an activist protesting in the streets or lobbying politicians. Of course I had great respect
for these organizations, which galvanized the gay community around issues of social justice and the need for access to potentially life-saving treatments. A good number of the leaders and participants were my patients. Still, I had to choose my battles. Treating patients was my greatest strength.

  Not long afterward, the stress brought on by the conflict between my desire to please or not disappoint others and my personal, more selfish needs precipitated an episode of atrial fibrillation, an abnormal rhythm disturbance of the heart, which sent me to St. Joe’s as a patient. My receptionist cried when she heard that I was in the emergency room. But I hadn’t had a heart attack, and I was discharged a few hours later after medication restored the rhythm to normal.

  After two years of twice-monthly visits with Dr. D., I wasn’t really better off psychologically. For that I blame myself more than I blame him—he was sympathetic, kind, and insightful. I still hadn’t developed a level of trust that would have allowed me tell him about the slap. It would have been the perfect talking point, but I chickened out. I hadn’t reached rock bottom. Like an alcoholic who isn’t ready to give up drink, I wasn’t ready to let down my guard sufficiently to expose the shame that lay at the heart of my insecurities and fueled my anxiety. I’m a highly defended person, to use psychotherapeutic lingo. To tear down those thick, high walls protecting a vulnerable core would take decades.

  Perhaps I would have kept hacking away at it, but Dr. D. moved to California. His departure provided the perfect excuse to halt the laborious, painful, and often frustrating process of psychotherapy.

  Instead of exploring the deeper meaning behind my self-punishment with Dr. D., I dismissed the slap as something minor, like tripping on the sidewalk or slipping on the ice. No harm had come—I didn’t develop a black eye, break a jaw, or knock out a tooth. Besides, I had too much else on my mind that morning. The day was busy like most days: mortally ill people I couldn’t save, morning report with burned-out nurses, a trip to the office in congested traffic, phone messages requiring more than yes and no answers, frightened but not yet mortally ill patients in my waiting room and exam rooms. a return to the hospital to attend a depressing lecture, “AIDS and the Heart,” at noon. back to the office, more phone calls, packed afternoon schedule. For twelve hours I had no break, or brakes. Go, go, go, go, go. Like a locomotive hurtling down a track, I would halt only if derailed. It would take more than a slap to derail me, but what that would be I didn’t know and hoped never to find out.

  It’s a cold, blustery day in late December 1991, the wind bone-chilling, the skies gray. The tan from my trip to Botswana is fading. I enter the hospital, head for the doctor’s lounge, and punch my private code on the computer key board to generate my list of patients. Still bundled up in my down jacket, I go to my mailbox and sort through the mail, which includes lab results, notes from the emergency department, and other papers. Then I exchange my parka for my gray coat and take the elevator to the third-floor radiology department. One of the clerks thanks me for the white poinsettia I’d brought to her and her fellow clerks in gratitude for their excellent service. Usually reserved, she is loquacious and seems genuinely pleased. She talks about how she has to stop eating Christmas chocolates because she’s getting too fat. The plant with its ivory petals is on a cabinet, brightening the dreary file room with its array of folders containing x-rays. Cheerfully, she searches for an x-ray that appears to be missing. She’s so nice, I can’t be upset and spoil the moment with a tantrum. With a sigh, I leave and take the elevator to 11 West, where I peruse my patients’ charts at the nurses’ station, which is surprisingly quiet. Someone has decorated the unit with red stockings hanging from the ceiling. The hallway is snowing socks.

  Bob J. is the first person I visit. His curtain is drawn, separating him from his roommate. He is in a reclining chair, feet elevated, all smiles when he sees me. Seated in profile beside him fussing with his intravenous line is one of the nurses, whom he shoos away.

  “Get over here, I’m talking to you first,” he says to me.

  Bob has one of those expressive faces that make me want to laugh. Always upbeat, he puts me in good spirits. He has bright, dancing green eyes, black hair artificially curled, and ruddy, chubby cheeks. Although not handsome, he has a winning personality. A purplish KS lesion that once bubbled up on his upper lip has faded to a stain.

  “I look like Madonna,” he says, referring to the lesion on his pooched lip as if it were a birthmark. “I feel great. Send me home.”

  His dangerously low white blood count—the reason for his admission to the hospital—has improved with a new medication called Neupogen, a bone marrow stimulant that has revolutionized the treatment of many cancers. Chemotherapy suppresses the cells that fight off infections. Neupogen counteracts that effect and allows doctors to be more aggressive with cancer-fighting agents, thus increasing the chances for survival. Although in the case of AIDS, it is only delaying the inevitable.

  Down the hall from Bob is Manny, who is engrossed in a phone conversation. First I see his roommate, Alex, who is bundled up to his neck in blankets, his face with purple-splotched nose exposed. He has beautiful eyes framed by thick lashes and is the vision of a sick person, absent a thermometer in his mouth and water bottle on his head. A man of few words, he exudes depression, although he denies feeling depressed. Because he hardly speaks, he looks melancholic yet doesn’t seem to grasp the enormity of his situation, like a child during a bombing raid who plays with toys despite the all-encompassing danger. He tells me that he feels better, that he’s eating well. He still requires nutrition pumped through his veins to combat malabsorption from unrelenting diarrhea, which has diminished but not ended. His fevers have abated, and with luck he may be able to go home soon.

  I return to Manny, who has gotten off the phone. His situation is complicated by the fact that he’s married with children and has lived a secret gay life. For months I implored him to stop having sex with his wife, but to no avail. I agonized about what to do and sought counsel from Tom and Gavin, who were both as uncertain as I. I contemplated notifying the police or the Board of Health but worried about the potential breach in patient confidentiality. In anticipation of the fallout—breach of confidentiality or failure to notify a person at risk—I even considered contacting my malpractice carrier to warn of a potential lawsuit, either from Manny or from Manny’s wife, depending. I consulted an ethicist, but our conversations ended inconclusively. I’d never confronted such a moral dilemma before in my career and felt woefully inept in dealing with it. I rued my lack of training as a legal expert or philosopher.

  After Manny’s AIDS diagnosis, his wife tested positive for HIV. For weeks she sobbed uncontrollably, and nothing I said consoled her. Her situation is too painful for me to contemplate: a mother, the wife of a dying husband, and herself possibly dying. I wonder what will become of their children. This is a scenario from a country torn by war, not something commonly experienced in the United States except in the era of slavery.

  A few years earlier I’d taken care of a man named Orlando, a janitor in a Catholic church who died of AIDS in 1986, leaving behind a wife and two sons aged ten and twelve. Six months later his wife, who was HIV negative, died unexpectedly of a brain aneurysm. The only relatives lived in Colombia and Mexico. A deacon at the church, a close friend of Orlando, took custody of the boys. Amazingly, Orlando had had the foresight to obtain life insurance shortly before his AIDS diagnosis. Yet the adjudicator from the insurance company chose to deny the disbursement of money to the children on the grounds that Orlando had lied not about his HIV status but about smoking, which had nothing to do with his death. At his own expense, the deacon hired the best attorney he could find and got the decision overruled by a judge. A gay man himself with no experience as a parent, the deacon became de facto father and is successfully raising the boys into adulthood. I can only hope that an equally loving benefactor will be found for Manny’s soon-to-be-orphaned children.

  Manny is curled up towa
rd the wall of his room. I call to him and he rolls over, pulling himself into a sitting position as he elevates the head of the bed. His face has lost its boyish underlying fat, and the slack skin is wrinkled with worry. Accepting the certainty of his death and no longer angry or full of unrealistic expectations, he has withdrawn from the world. With furrowed brow, he looks out at some invisible landmark beyond fear.

  “Manny, we can’t send you home,” I say. “It seems that the hospice people won’t help at home unless you tell your kids your diagnosis. They’re at risk because they might come in contact with your body fluids. They’ll have to know why they need to be careful.”

  “I can’t,” he says.

  “I know, so you have to stay here. Your wife can’t care for you alone. I won’t send you home on morphine without support from nurses.”

  “Fine, I stay here then,” he says in his Greek accent.

  “You’ll have to leave the AIDS unit and go to the skilled unit, a kind of nursing home in the hospital,” I say. “They’re not as attentive down there because the nurses have more patients to attend to than on the AIDS unit.”

  “That’s OK,” he says. “Private room? Good.” He brings the phone to his lap. “I call my wife. She want to speak to you. I dunno what.”

  He presses down hard on each button like a neophyte using a typewriter for the first time. There’s frustration in his fingertips. He says something in Greek.