Plague Years

by Ross A. Slotten, MD

  The day after admission I had been compelled to place him in respiratory isolation because a sputum sample showed “red snappers,” tuberculosis bacteria, which stain red when tested. Although he probably had a recurrence of MAC, an organism in the same family as tuberculosis but not communicable and, in people with normal immune systems, usually harmless, we presumed old-fashioned TB until proven otherwise. To protect ourselves, we wore tight-fitting masks with pores small enough to prevent penetration by infectious spores. Not only are such masks tight, but they are also malodorous from the smell of one’s own trapped breath. Talking through one of these masks is like talking through a tube, which makes one’s voice sound hollow and muffled.

  Now I had to give Justin bad news through that hot, tight mask: He didn’t have tuberculosis. MAC had returned, indicating that his previous treatments for it had failed and that he was likely to die from his infection. I didn’t tell him that he’d die from it; I didn’t have to, because he knew what the failure of treatment meant. As I spoke, he stared at me in horror and disbelief. Not wanting to hear what I had to say, he fidgeted, coughed, groaned, and backed away from me as if I’d lunged at him with a knife; but he was in bed and had nowhere to go. I tried to grab one of his hands as he folded himself into a ball by the headboard and sobbed. Without that physical connection, no words could console him: I couldn’t look him directly in the eye as I spoke, and everything I said seemed pointless. He was too overwhelmed with grief and fear to hear me anyway.

  Tall and skinny with peachy skin, a ponytail, a scruffy goatee, and blue eyes, Justin at first had put me off, reminding me of a hippie from the 1960s. In my mind hippies were difficult to deal with because they rejected the status quo and preferred alternatives to everything, including modern medicine. Although to a certain extent that was true for Justin, we’d developed a good rapport. Like Bill, he was at heart a gentle soul, and I overlooked what I viewed as his eccentricities. But when a doctor has to deliver bad news, a wall drops down and a friend can become an enemy. I felt like a spy whose identity had been exposed, an agent of the AIDS virus, a messenger of death. At the height of the AIDS crisis I’d been typecast in the role of a grim reaper gripping a stethoscope instead of a scythe. Perhaps an actor would have relished the part, but I hated it.

  As I tried to speak, Justin hyperventilated and grasped at his oxygen mask as if it were a lifeline. An outpouring of heat from the vents (the building’s heating system dated back to the 1960s) had turned the room into a sauna, and sweat poured from his brow and stained his gown. I was sweating too. He squirmed at every word, and I wanted to flee. I felt awkward, as I’d erred in my approach to him. I’d come to his room to discuss end-of-life issues, but end-of-life issues were the last thing he wanted to talk about. Having just dealt with Bill’s death, I lacked the energy to press further.

  Since there was nothing more for me to say and no way to console him, I left in frustration and sadness, mentally throwing up my hands at the hopelessness of it all. In the charting area I made uncomfortable telephone calls to one of Justin’s friends and his mother. It was time for them to come to Chicago, I advised, before Justin “passed away.” I avoided giving them a timeline—no one dies on a predictable schedule—but he couldn’t survive much longer, especially since I’d run out of medications to prescribe for him.

  That night Gavin and I opened a bottle of wine before dinner to help us unwind, which had become a nearly daily ritual. In the winter we’d sit on the white leather couch and armchair in the living room in front of a crackling fire, curtains drawn and Monty begging us to play with him or, when that didn’t work, curling up beside us as we talked. In the summer we headed to the second-floor deck that overlooked a shade garden packed with rhododendrons, holly, and hostas and bounded by the garage, whose ivy-carpeted wall seemed to ripple in the breeze. Surrounding us were the back porches of other homes and apartments and the black ropes of telephone and electrical wires, an uninspiring urban landscape. We discussed our work, competing for the worst case or worst experience of the day. Gavin had his share of AIDS cases, but AIDS wasn’t the only disease that destroyed the lives of our patients. No one ever won these depressing contests. And alcohol did little to improve our moods. Our preferred addiction was travel, and we often longed to be anywhere but in Chicago. But like any addiction, that form of escape never fully satisfied.

  In truth I could never escape, because my mind traveled with me, and in that mind were images of the dead and dying I struggled to suppress or forget. In my darkest moments, my body felt like a prison. Like the boy wounded by a gunshot who had slunk along the fence that one autumn day, I longed to be whisked off to a place of safety, free of stress and anxiety. But for me that place didn’t exist.

  : 11 :

  AIDS in Namibia (1992–93)

  In the fall of 1992 I decided to examine HIV in a foreign country, a project that would combine my work treating AIDS patients and my passion for international travel. Only a year earlier, in Botswana, I’d dismissed such a project, preferring to be a tourist rather than a physician engaged in clinical research. But now I wanted to look beyond my narrow world.

  Despite the horrors that often engulfed me, I found AIDS strangely fascinating. AIDS had replaced syphilis as the so-called Great Imitator. With its potential to affect every organ in the body, just like syphilis, it mimicked other medical problems like heart failure, leukemia, stroke, Alzheimer’s disease, or multiple sclerosis. No two patients with the disease were alike, which made HIV both intellectually stimulating and emotionally challenging. When the enthusiasm of my interns and residents flagged under the burden of so many sick young men, I reminded them our work permitted them to learn about the management of all sorts of common health problems, which they could apply to their own patients after completing their training. In those settings the only difference was that HIV wouldn’t be the underlying cause of, say, kidney failure, for example. In both scenarios the patient needed dialysis. It was a hard sell.

  The impetus for this shift in my focus was a master’s program in public health that I enrolled in at the University of Illinois at Chicago. That was in September 1992, at the height of the AIDS crisis, a crazy idea. I already worked fifty to sixty hours per week, not counting calls at night or weekend hospital rounds, but I yearned for a more substantive diversion than a two-week holiday. The addition of C. to our practice in 1991 gave me greater flexibility in scheduling my patients and two weekends off a month. Somehow, I thought, I’d find time to squeeze in classes, take exams, and write papers, while caring for patients and maintaining an active social life.

  Public health had interested me since medical school. Some of the greatest advances in medicine had occurred not in the laboratory or operating room but on a larger stage. Edward Jenner’s smallpox vaccine and Jonas Salk’s polio vaccine eventually halted two of humanity’s most devastating epidemics; John Snow, the father of modern epidemiology, the study of the impact of diseases on human populations, traced the source of a cholera outbreak in London to a contaminated water pump and pointed the way toward the establishment of a clean and safe water supply. And the introduction of oral rehydration therapy markedly reduced death rates from diarrhea in infants and children in resource-poor countries. In tandem with advances in medicine—the invention of anesthesia, the elaboration of the germ theory as the basis for infectious diseases, and the discovery of penicillin, to name a few—public health measures had improved the quality of human life and doubled life expectancy in resource-rich countries like the US, Europe, Japan, Australia, and New Zealand from forty years at the turn of the nineteenth century to eighty at the end of the twentieth. AIDS threatened to upend that hard-earned progress.

  It might seem odd that I sought to alleviate my stress by returning to the classroom, but I’ve always been a nerd. I can spend hours roaming through bookstores and libraries, skimming works of fiction and nonfiction that pique my interest, entranced by prose and images that transport me to a differ
ent world. Books and intellectual discourse, even on subjects related to my daily work, would be the perfect antidote for my stratospheric stress levels, I hoped, since psychotherapy hadn’t done much good and vacations provided only a temporary remedy.

  Hearing the news, one of my AIDS patients burst into tears because he thought I was leaving Chicago to work for the World Health Organization in Geneva. I wondered how this rumor got started. Before the advent of social media, gossip spread around the Chicago gay community in the old-fashioned way, by word of mouth. I suppose it was a logical assumption because many of my patients were aware of my penchant for travel. To this patient, a thirty-five-year-old man from Finland, it wasn’t farfetched for someone to uproot himself and relocate to a strange land several thousand miles from his birthplace. My grandparents had done that, in what is now Ukraine, escaping with their families from murderous Cossack bands that hunted them like animals because they were Jews. Many gay men from other parts of the world had made a similar exodus, immigrating to the United States because it offered the hope of acceptance and freedom from persecution. Touched by this unexpected outpouring of emotion, I hugged my patient and told him what I was really doing.

  But I couldn’t promise him I would still be practicing in a few years. I had an additional reason for getting another degree: job security, a funny thing for a doctor to worry about. The fee-for-service model of medical care was coming to an end, because it encouraged too much unnecessary testing or too many procedures, rewarding quantity rather than quality. Up until the early 1980s, hospitals and doctors experienced little regulation. A patient suffering a heart attack might spend weeks on a coronary care unit, and the government (in the case of Medicare) or private insurers footed the bill. Moreover, rapid advances in technology had pushed healthcare costs upward. The costs far outpaced inflation. Something had to be done, and doctors and hospitals were perceived as part of the problem, not the solution. The potential changes sent doctors, including me, who were not used to having their judgment questioned, into a tizzy. Denial of payment for a service or permission to order an MRI, both deemed unnecessary by an unseen reviewer; prior authorization requests for an expensive medication; piles of paperwork; long waiting times to appeal the denials until you just gave up—these were some of the frustrations we were subjected to. I imagined two curves, revenue and expenses, converging over time and eroding my personal income. I hoped the extra credential of an MPH would give me more job options in a changing medical world. Perhaps I could work for the WHO, if I got sick of it all or was driven out of private medical practice.

  In the classroom I enjoyed interacting with healthy men and women whose experiences and aspirations differed from my own. It was, metaphorically, like going to a spa in the mountains, if one ignored the Brutalist architecture. Students came from all over the world to attend this program. One young man I developed a bit of a crush on had spent time in Mali on a project to eradicate the guinea worm, a grotesque scourge in West Africa. (A year or more after a person drinks water contaminated by a flea that carries guinea worm larvae, hideous adult worms emerge from blisters on their limbs, causing intense burning pain and sometimes death.) Everyone I met was eager to use what they learned in the program to improve public health in their respective states or countries. I was surprised that the competitive spirit I’d known in college returned in full force. I wouldn’t settle for anything less than an A, although it made little difference what grades I got.

  Studying the AIDS epidemic as a public health problem, not just a medical condition, became one of my prime objectives during the next two years. At every opportunity I wrote a paper on some aspect of the crisis—AIDS and the law, AIDS in the workplace, and the global dimensions of the AIDS epidemic, among other topics. The academic spirit energized me and gave new meaning to my work as a doctor.

  One day in my International Health class we watched a short film called Land without Bread, a 1932 documentary by Luis Buñuel that focused on an economically depressed village in Spain. Neglected by the Catholic Church and the Spanish monarchy, people there suffered from malnutrition, poor sanitation, and diseases like goiter due to lack of iodine in their diets and anemia due to iron deficiency, and they died of snakebites, infected wounds, dehydration and dysentery. With dramatic improvements in public health, these problems vanished in two generations. How I wished that we could have solved the AIDS epidemic with equally effective tools!

  Before class that morning I’d rounded on five very sick men: Carl, who’d spent most of the last year in the hospital with one difficult medical problem after another; Adam, with a new case of PCP, who’d given up alcohol and cut down his work hours as bargaining chips in his losing battle; Jordan, who’d survived two bouts of PCP and in the previous few days miraculously returned to life after his kidneys had nearly shut down as a result of a dangerous bacterial infection; Alvin, a former body builder admitted for weight loss and fevers, who’d refused AZT and adamantly opposed any measures to prolong his life; and Lane, a polite and dignified man who was dying from multiple opportunistic infections but still retained a sense of humor, replying with a weak smile when asked how he felt, “Like two eggs and a slice of ham.”

  Although these patients were well cared for, 11 West was in disarray. I did my best to avoid being swept into the drama, but that was impossible. Rod, the head nurse for the last four years and a former priest with whom I helped set up a free-standing facility for homeless AIDS patients called Bonaventure House, had quit and run away to California with a man twenty years younger. The nurse who replaced him, a lesbian, was fired because she was stealing narcotics to help cope with a recent breakup with a girlfriend. We also fired a nurse’s aide for arriving to work drunk. Another nurse was suspended for two days without pay because she drove home a known drug abuser who left against medical advice to meet his supplier. Her excuse was that she didn’t want him to get hurt, but that didn’t sit well. If she’d gotten into an accident with the patient, her supervisor pointed out, the hospital could have been sued. Sometimes AIDS attracted a motley assortment of caregivers who often demanded more attention and tender loving care than the patients they served. But others were rocks. Carol, a wonderful nurse who’d cared for our patients since the beginning of the epidemic and hung on despite the stress, once remarked to one of her dysfunctional fellow caregivers, whose departure seemed imminent, “I was here before you got here and I’ll be here long after you’re gone.”

  I admit that my own life during that time was also out of control. I’m trying to do too much—work, school, social gatherings, opera, I wrote in my journal in February 1993. I’m sleeping barely 5 hours a night, and the sleep has been fitful. Too much on my mind. Last Saturday I awoke early to do some homework; I had class 9:30–12:30; I rushed to the office to see ten patients, until 4 o’clock. We had guests for dinner. Gavin went out to a benefit/party and didn’t come home until 3. I had 6 hours to relax on Sunday, then we had a political dinner to go to. . . . On Monday I got to the hospital at 6:30 AM. I had nine patients to see; from 9–10 I attended AIDS rounds. My office schedule was packed. I had umpteen messages. I had class 5–7. I met Tom and C. for dinner at 8, went to sleep at 11, awoke at 5, made rounds, attended class at U of I, rushed back to the office foolishly by way of the expressway, which was bumper to bumper because of construction (I cursed, mumbled to myself, pounded the steering wheel, gnashed my teeth—wondered if anybody could see me and, if they could, wondered if they thought I was nuts), saw patients 1–6:30, picked up Gavin at home to go to the opera, saw a fabulous production of Das Rheingold (the Rhine maidens suspended by bungee cords, swimming, dancing in midair), went to sleep at 11, awoke at 5, rounds 6:30–9:00, office 9:00–11:00, drove down to U of I to meet with the instructor of my International Health class who had some slides and literature for me on schistosomiasis [a parasitic disease] for a presentation I offered to make at the end of March . . . ran an errand, got my hair cut, returned to U of I for class, returned home, walk
ed Monty and Fiona, played with them, puttered around till 8:30, met Gavin and two residents for dinner, went to bed at midnight, awoke at 5, dashed off to the hospital at 6:30 . . . and then I began to unravel.

  And yet I didn’t unravel. I kept going and pushing on even when my body clamored for rest. I’m not a quitter. “Winners never quit; quitters never win” was a high school gym aphorism that had stuck with me, despite my total lack of athletic ability. It popped into my mind whenever I felt like running away from an unpleasant task or project.

  The project I now decided to undertake was an exploration of the impact of the AIDS epidemic on Namibia, in part because of its obscurity to Western audiences. Few of my friends had heard of Namibia, a country half the size of Alaska with a population of just 1.5 million people, and no one I knew had been there. Moreover, little was known about the course of AIDS there. I planned to spend ten days in Namibia in late May 1993, then head to Berlin for the Ninth International Conference on AIDS to learn more about AIDS in southern Africa. There was nothing more for me to learn about AIDS in the West. I’d already filled a file cabinet with alphabetized folders full of articles from numerous journals related to every aspect of AIDS. I felt like a field biologist assembling a menagerie of moths, butterflies, and other insects before the advent of evolutionary theory. What does it all mean? I sometimes wondered.