Plague Years
Plague Years
A Doctor’s Journey through the AIDS Crisis
Ross A. Slotten, MD
The University of Chicago Press
Chicago and London
The University of Chicago Press, Chicago 60637
The University of Chicago Press, Ltd., London
© 2020 by The University of Chicago
All rights reserved. No part of this book may be used or reproduced in any manner whatsoever without written permission, except in the case of brief quotations in critical articles and reviews. For more information, contact the University of Chicago Press, 1427 E. 60th St., Chicago, IL 60637.
Published 2020
Printed in the United States of America
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ISBN-13: 978-0-226-71876-7 (cloth)
ISBN-13: 978-0-226-71893-4 (e-book)
DOI: https://doi.org/10.7208/chicago/9780226718934.001.0001
Library of Congress Cataloging-in-Publication Data
Names: Slotten, Ross A., author.
Title: Plague years : a doctor’s journey through the AIDS crisis / Ross A. Slotten.
Description: Chicago : University of Chicago Press, 2020.
Identifiers: LCCN 2020004971 | ISBN 9780226718767 (cloth) | ISBN 9780226718934 (ebook)
Subjects: LCSH: AIDS (Disease)—Illinois—Chicago. | AIDS (Disease)
Classification: LCC RA643.84.I3 S568 2020 | DDC 362.19697/9200977311—dc23
LC record available at https://lccn.loc.gov/2020004971
♾ This paper meets the requirements of ANSI/NISO Z39.48–1992 (Permanence of Paper).
To those we lost to the AIDS crisis and to those who survived it
It is a wondrous tale that I have to tell: if I weren’t one of many people who saw it with their own eyes, I would scarcely have dared to believe it, let alone write it down, even if I had heard it from a completely trustworthy person . . .
— Giovanni Boccaccio, The Decameron
Contents
Prologue
1 No End in Sight (1992)
2 First Cairn (1984)
3 Out of the Closet and into the Fire (Before 1983)
4 Art’s Final Illness (1985)
5 The Period at the End of the Sentence (1985)
6 Known Knowns (1985)
7 The Saga of Stan S. (1986–88)
8 The Predator and Prey Within (1991)
9 Unstoppable Wildfire (1991–92)
10 Dead Men Walking (1992)
11 AIDS in Namibia (1992–93)
12 AIDS in Berlin (1993)
13 Turning Point (1996–2004)
14 Transitions (2007–14)
Epilogue (2016 and Beyond)
Acknowledgments
Prologue
I was there at the beginning of the AIDS epidemic, and I’m still here. I came of age as a doctor and as a gay man during that monumental public health crisis, and thirty-five years later I continue to treat people with or at risk of HIV.
This book is a record of my journey. I kept journals and notes from the first, chronicling the stories of those who died and the few who’ve survived to the present. Those notes help remind me how and why AIDS ravaged a generation, its impact as catastrophic as that of war and genocide. They also chronicle my own story. My story isn’t over yet, and neither is that of AIDS. If we think that it is, we’re practically inviting it to run rampant once more.
If my narrative ended in 1995, it would add little to the story of the AIDS epidemic. During the bleakest years, from 1981 until the late 1990s, AIDS sparked a creative outburst in the artistic community, whose members were disproportionately annihilated by the disease and were outraged at the indifference of politicians and policymakers. That output began on the margins but came to include influential mainstream plays, memoirs, films, art installations, two Broadway musicals, and even a symphony. A few straight doctors also reported on their experiences, most notably Abraham Verghese in his classic account My Own Country. Once effective treatments became available and the death toll plummeted, a sense of urgency among those afflicted and those who cared for them seemed to dissipate.
But AIDS hasn’t disappeared. There is no cure or effective vaccine, so there’s no end in sight to one of the worst plagues of modern times. To date, more than seventy-five million people throughout the world have contracted the infection, and thirty-five million have died. Those numbers continue to rise, though no longer at a logarithmic rate. Everyone infected with HIV will carry that virus to their grave, even if what kills them is a heart attack, a stroke, or cancer. But if they stop their lifesaving regimens, known as HAART—highly active antiretroviral therapy—then AIDS will kill them first. Imagine the psychological, physical, and financial burdens a twenty-one-year-old man infected with HIV must shoulder for the next sixty years if no cure is discovered! It takes tremendous discipline and willpower to adhere to a daily therapy you cannot miss. Even though we can now control HIV infection, no one wants it any more than they want to lose their limbs, eyesight, or hearing.
This story marks my progress as a doctor who first confronted a challenge for which nothing could have prepared me and who then unexpectedly became an expert. But more important, it marks stages in our understanding of HIV, beginning before anyone had described AIDS, for the conditions that abetted the spread of the disease were present in the decades before its onset. Epidemics happen for a reason. HIV couldn’t have gained a foothold and swept across the world, sparing few places, without the ease of international travel; increased sexual promiscuity brought on by the sexual revolution of the 1960s and 1970s; the rapid spread of other sexually transmitted diseases like gonorrhea, chlamydia, syphilis, herpes, human papilloma virus. and hepatitis A, B, and to a lesser degree C; the failure of political leaders to authorize adequate funding to confront the epidemic in its earliest phases; and the disruption of traditional life in many societies by colonialism and civil wars.
The story I tell here is primarily a Chicago story, for New York, San Francisco, and Los Angeles weren’t the only cities whose gay communities were decimated by AIDS. We suffered too, even if the media overlooked us. Because I’m a gay man who treats mainly gay patients, I don’t address the epidemic’s victims who injected intravenous drugs or were infected through contaminated blood products, or women and children, because those stories are beyond my personal experiences. Those stories are eminently worthy of being told, but the ones I’ve chosen to tell center on my gay friends and patients. Names and identifying facts have been changed in many instances to protect privacy and maintain confidentiality.
For those who lived through the worst period of the epidemic, this book could bring back memories of an era that we all hope will never be repeated. For those who didn’t experience that terrible time, or who’ve forgotten how terrible it was, let my chapters serve as a warning to the complacent and the ignorant: untreated HIV is as ruthless as any terrorist and as destructive as a nuclear bomb. Humans have never conquered any sexually transmitted disease and are unlikely to do so unless they stop having sex. Perhaps HIV will someday become a historical footnote if the infection can be cured or a preventive vaccine is developed, but it won’t vanish, just as other sexually transmitted diseases defy eradication despite the earnest efforts of public health officials and medical practitioners. HIV will remain a part of the human landscape for a long time to come.
It’s been a privilege for me to travel on this journey with my patients, some of whom have managed to stick with me for more than three decades as the management of their health has evolved and improved dramatically. I hope our collective and separate journeys through a kind of holocaust are worth remembering on their own, and for the lessons they mi
ght yet teach.
: 1 :
No End in Sight (1992)
To the casual visitor, the west wing of the eleventh floor of St. Joseph Hospital didn’t look like a vision of hell. The elevator opened into the solarium, a glass-encased semicircular space with a panoramic view of Lincoln Park and Lake Michigan. In the distance sailboats plied the waters beyond a steady stream of traffic on Lake Shore Drive; in the foreground there were joggers on tree-shaded paths. Northward, fashionable high-rises lined the park; to the south rose the iconic skyscrapers of downtown Chicago. What wasn’t visible, to the west, was Boys’ Town, the city’s gayest neighborhood, a jumble of bars, restaurants, sex shops, and inexpensive apartments—the epicenter of the AIDS epidemic in Chicago. It was September 1992, and the city brimmed with life, in stark contrast to 11 West—our AIDS unit—where death reigned.
At 7:00 a.m., when I arrived for hospital rounds, the solarium was usually empty; but occasionally a patient sat staring at the scenic vista, his back to me and his body connected to an intravenous line that snaked from a plastic bag atop a metal pole and disappeared into an arm I could not see; or a patient’s lover or family waited for me or one of the other doctors who took care of AIDS patients, seeking an update on their loved one’s condition or to ask questions we often couldn’t answer. These uncomfortable encounters foreshadowed my visits to the sick and dying patients on the ward. Despite the picturesque urban vista, I could never deceive myself: eleven years into the AIDS epidemic, 11 West was not the place of hope we had conceived of but one of darkness and despair.
Seen from above, St. Joseph Hospital was the shape of an enormous cross, thirteen stories tall. It was a Catholic institution administered by the Daughters of Charity, an order that once commanded the largest nonprofit fleet of hospitals in the United States. The Daughters soft-pedaled their religion. There were, of course, the requisite crucifixes in strategic places, and in the main lobby there was a larger-than-life color photograph of the current pope in full regalia. But everyone was welcome regardless of religious belief (or nonbelief), race, gender, or sexual orientation. During those times when I felt frustrated by our failure to discover lifesaving treatments; bristled at the bigotry of evangelists like Jerry Falwell and Pat Robertson, who railed against those infected with HIV as sinners deserving their horrible fate; or struggled with internal demons—guilt about my own good health or rage at my impotence—I sometimes forgot that St. Joe’s, as we called it, was a refuge of tolerance and support. But if it hadn’t been, it would have been impossible to practice there.
I’d exited the elevators on the eleventh floor so many times during the four years since we’d established 11 West that I rarely bothered to look out the floor-to-ceiling windows. On most days I was in a rush, like most doctors. Pushed and pulled in many directions, I had a lot to accomplish in the two to three hours I could dedicate to rounds. 11 West lay straight ahead, its gleaming linoleum floors forming an elongated truncated triangle. When the doors to the patient rooms were open, they emanated rectangular splashes of light. It reminded me of a runway or stage, but the drama didn’t occur in the hallways. It was on the sidelines, in each room, where awful things unfolded.
I stopped at the nurses’ station first, gossiping for a few minutes with the unit secretary, Flo or Mary P., and the nurses, like the two Carols, Rita, or Roger, who’d dedicated their professional lives to caring for the patients—mostly gay men of all races and ethnicities from every part of the city and suburbs—who were admitted to, discharged from, readmitted to, or died on the unit. Then I extracted my charts from a carousel and sat down at the long desk, the binders spread out before me like a giant hand of cards. For the next few minutes I caught up on the previous day and night’s events, reviewing the notes of the nurses, interns, residents, and consultants, mulling over lab results, and gathering my thoughts about my patients’ diagnoses and prognoses.
Doctors are often referred to as healers, or as practitioners of the healing arts. I thought of the two cardiovascular surgeons on staff, who performed lifesaving procedures like cardiac bypass surgery; or my orthopedic friends, who fixed hips and repaired other fractures that in a distant era would have left their patients permanently crippled or deformed. But on 11 West I wasn’t healing anyone. I was ministering to my patients, as doctors did in the pre-antibiotic era, doling out bad news, holding a hand in sympathy, or expressing my condolences in the face of an incurable fatal disease. I felt more like a failure than a success, even though HIV-infected gay men from far and wide sought me out because of my expertise and reputation.
As I made my way to the patients’ rooms, my shoes clicking on that glistening surface, the pungent odors of sanitizer, shit, and urine—a noxious smell combination unique to hospitals and nursing homes—wafted into my nose. From some of the rooms came sounds of suffering: groans, cries of varying intensities, hacking coughs, vomiting. If I heard laughter, I suspected dementia or an inappropriate response to illness, for there was little to laugh about on 11 West. Rounding on terminally ill patients filled me with intense sadness and wasn’t something I looked forward to. My patients hung on to every one of my words and gestures, for what I said or how I said it held the key to their salvation or pointed the way to their demise. It was a pressure almost too much for me to bear.
The first room I entered that morning was that of Troy, a twenty-eight-year-old HIV-infected gay black man, his skin sallow and his head shaved. One week earlier I’d sat on the side of his bed holding his hand as we talked about how he’d get out of the hospital and resume a normal life for a while. I’d been treating him with intravenous antibiotics for a miserable sinus infection, its severity due to his HIV infection, but each day he descended deeper into a depression as he spent more time in bed clutching the left side of his head in pain. On the intended day of discharge, he refused to go home because he still felt terrible, he said, but I couldn’t understand why. One week should have been enough time to make inroads against a severe sinus infection, I thought.
Troy had few telltale signs of AIDS—no thrush (a white coating in the mouth and throat caused by a yeast infection); no enlarged lymph nodes; and no purplish lesions of Kaposi’s sarcoma, a type of AIDS cancer. His CD4 count, a marker for the state of his immune system, was low but not profoundly low. The absence of such signs had made me too complacent about his health. After examining him and finding nothing wrong, I asked him to stand up. Since his admission, I’d not watched him walk or move about his room; this turned out to have been a serious oversight. Bracing himself on the handrails, he rose from the bed, took a few steps forward, and staggered, which startled me. Laying my hands on his shoulders, I kept him from falling to the ground as it dawned on me that he was suffering from something more serious than sinusitis and depression. And he was. The next day he had a seizure and lost consciousness. A CAT scan of his brain showed multiple tumors, diffuse disease of the white matter, and swelling of the brain, images suggesting that his death was imminent. I’d not suspected the grave diagnosis—brain lymphoma—so convinced was I that something more benign was causing his headaches and fatigue (an x-ray of his sinuses had indeed shown sinusitis). Miraculously, he improved after I prescribed high doses of steroids, which alleviated pressure on the part of the brainstem that controlled his vital functions. But that was temporary.
Several days after the seizure I found Troy alert but debilitated by severe neurological deficits. His room was dark except for a television blasting inanities. In the flickering artificial light he lay on his back with his neck twisted awkwardly to the left (“looking at the brain lesions,” as the consulting neurologist, Dr. L., explained) like someone who’d had a stroke. His lower lip protruded, and he breathed through his mouth, but both lips were scaly and cracked. His face glistened with oily secretions from the pores, and he smelled of urine and sweat despite the nurses’ best efforts to keep him clean. How much had changed in so short a time, I thought. A vibrant young man seemed to have aged fifty years
in the space of two weeks. Pity gripped me as I approached the bedside, but as a doctor I had learned to suppress emotions, for they can cloud clinical judgment and lead to faulty decisions. A sick person wants to see strength in his doctor, not weakness, although too much suppression makes the doctor seem cold and uncaring. Each time I confronted a dying patient, or any patient for that matter, I struggled to find the right balance between compassion and aloofness; this struggle took place scores of times every day. The internal conflict manifests itself in my journals, where “one” and “you” often replaces the more personal “I.” Unconsciously I gave myself permission to detach from my true feelings and excuse myself from taking responsibility for painful decisions and actions. I know this now, after decades of reflection.
Pulling up a chair, I sat down beside the head of the bed, took Troy’s hand, and called his name.
“Hello,” Troy responded in a garbled voice, unable to turn his head toward me.
The muscles on the right side of his neck seemed to bulge because of the strain on the left. With his neck bent in such a vulnerable way, he reminded me of a sacrificial lamb waiting to be slaughtered. An impairment of his eye muscles made each eye rove separately and prevented him from looking at me directly. Although when I asked him to he squeezed my fingers with his left hand, indicating higher cognitive function, he couldn’t move the rest of his arm. I asked myself if this was the best he’d ever be and concluded it probably was. What a nightmare! I should never have tried to treat him, I lamented inside. It would have been best to let him die rather than keep him in the hospital to languish in such a dependent state for the remaining days or weeks of his life. I didn’t tell him this because it was my job to give some degree of hope even in the most hopeless situations. Yet given the severity of his disability, it wasn’t possible to have a meaningful conversation with him. All I could do was pat him on the shoulder, grope for a few reassuring if meaningless words, and move on. And so I did.
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