Voices in the Band

Front matter

yO 1 CEs ITS es E Aa N D

SUSAN: C BALL

A VOLUME IN THE SERIES

Introduction

3. 1992: No Easy Answers and Little to Offer 4. 1994: Too Many Drugs, No Medication 5, 1994: Being Mindful of the Subtext 6. 1994: Weekend on Call

Contents vill

Contents

16. 1999: Despite Our Best Intentions

17. 1999: Coping with a Different Paradigm 18. 2000: Going Home

Epilogue

Acknowledgments could say that I began writing this book when I started my job at the Center for Special Studies—or maybe even before that, when I was writing about some of the patients I cared for while I was a resident or a medical student. I began consciously writing a book about ten years ago with the encouragement of my boss, Jon Jacobs. I wrote on and off, plugging away at times and leaving it in a drawer at others. Ultimately it was my partner, Shari, who, on seeing the advertisement for the Narrative Medicine Program at Columbia University in the New Yorker magazine, excitedly showed it to me and said, “You should do this, Suze; then you can finish your book.” And she was right. I had great teachers at the Narrative Medicine Program. Maura Siegel, Craig Irvine, Sayantani Das Gupta, Nellie Herman, Marsha Hurst, and Pat Stanley offered inspiration in this important field, and I thank them all. Rita Charon shepherded the program into being, and her support for the book has been enthusiastic and unflagging. I am indebted to her as an advisor, a colleague, and a friend. My superb writing teacher, Lynne Sharon Schwartz, spent countless hours reading and rereading, coaxing stronger sentences and intelligible phrasing from my passive-voice-prone pen. I am so grateful for her patient, meticulous help.

I hope it is clear in the story how much I admire Jon Jacobs. Jon has stood by me as a friend and mentor for more than twenty years. From the very start he has kept our focus on one essential ideal: to do what is best for the patient.

X ACKNOWLEDGMENTS

I hope this book conveys how we tried, always, to do that. Sam Merrick has also been a tremendous colleague, a dedicated, smart, compassionate physician with whom it has been a real honor to practice medicine. Jon’s and Sam’s support have been invaluable. All my colleagues at CSS have contributed to this book over the years, in ways great and small. I have been very fortunate to work among such an elite and committed group of professionals.

I cannot overstate my gratitude to my family. Writing a book while working as a full-time clinician meant a lot of early mornings or late nights alone with the computer with the door closed. My sons, Jules and Paris, got older; my partner did a lot of needlepoint and ordered take-out more than she would have liked. Through it all, Shari’s unstinting belief in me, her patience, encouragement, and endless efforts to read and critique were phenomenal and wonderful, and I cannot possibly thank her enough.

Jamie Zimmerman and her daughters, Zoe and Charlotte, should not go unmentioned. Even when I couldn't find anything good to report they urged me to keep going, and they believed in me. I also thank Jim, Margo, Sarah, ML, Ray, and Joni for their support. Emily Wheeler provided wise comments and advice, and our long friendship helped me enormously. My dear friend Elizabeth Kelly continues to be a source of inspiration with her dedication and commitment to her important, sometimes lonely work in Cincinnati.

I owe a debt to Randy Shilts’s, “And the Band Played On,” a book of heartbreaking integrity, which opened so many eyes and from whose title mine has borrowed.

Id like to thank my editors and the talented, wonderful people at Cornell University Press. They have been welcoming and kind, thoughtful and perceptive. I enormously appreciate their belief in me and their support for the book.

Last I thank the hundreds of patients who contributed to the writing of this book. I hope some day we will cure AIDS and the time described in these pages will be just a shiver in history. But the patients will always be remembered.

Author's Note his is a work of narrative nonfiction. The events and people are real and

the conversations took place. Memory, however, is the medium through which all of these words passed on their way to the written page. There are events, and then there is our memory of those events, and thereafter there is the memory of the memory. As a result, it’s unlikely that any conversation or comment is documented verbatim and I do not pretend otherwise. I tried hard to be true to my sense of the moment, my appreciation for others’ thoughts and feelings, and my respect for the individuals around me.

All the patients in these pages exist, but their names have been changed and identifiers are scrambled. People who know the clinic or have worked there will no doubt recognize some characters, but I tried to make each patient a composite of patients. I asked for and obtained permission from patients to include aspects of their stories in this book.

The names of all of my colleagues except my own and that of Dr. Jon Jacobs have been changed.

I should also say that there is a great deal that this book does not cover. Writing about ten years of HIV involved omitting much more than including. For example, I mention but in no way do justice to the activism of that period of time, and the dramatic influence of that activism on drug development and government involvement. I do not discuss the global impact of this epidemic, or how it continues to rage and decimate families and communities xii AUTHOR'S NOTE around the world, particularly in sub-Saharan Africa. I don’t discuss Ronald Reagan and the sad cost of his bigotry, or the heroism of Larry Kramer, whom many reviled but who spoke the truth very early on. Or the amazing story of Ryan White, whose legacy continues to keep thousands of HIV-infected patients safe, so long after the young man died. This book is the story of one place and one time and the people who came and went in those moments.

What is the course of the life Of mortal men on the earth?— Most men eddy about

Here and there—eat and drink, Chatter and love and hate, Gather and squander, are raised Aloft, are hurl’d in the dust, Striving blindly, achieving Nothing; and, then they die— Perish; and no one asks

Who or what they have been, More than he asks what waves In the moonlit solitudes mild Of the midmost Ocean, have swell’d,

Foam’d for a moment, and gone.

Introduction am an AIDS doctor. I originally did my residency training in internal med-

icine, and in 1992 I started working for Dr. Jon Jacobs at the Center for Special Studies, the AIDS care center in New York City. At that time the idea of an HIV specialist was in its infancy. While we knew what caused AIDS, how it spread, and how to avoid getting it, we didn’t know how to treat it or how to prevent our patients’ seemingly inevitable progression toward death. The stigma that surrounded AIDS patients from the very beginning of the epidemic in the early 1980s continued to be harsh and isolating: mention AIDS and people imagined promiscuous homosexuals and heroin addicts, all of them skinny and covered with purple spots. They remembered those early photos of diaper-clad, emaciated men with scraggly beards looking fearfully into the face of the priest or nun leaning over their hospital bed. People looked askance at me: What was it like to work in that kind of environment with those kinds of people?

My patients are “those kinds of people.” They are an array and a combination of brave, depraved, strong, entitled, admirable, self-centered, amazing, strange, funny, daring, gifted, exasperating, wonderful, and sad. And more. At my clinic most of the patients are indigent and few have had an education beyond high school, if that. Many are gay men and many of the patients use or have used drugs. They all have HIV, and in the early days far too many of them died. Every day they brought us the stories of their lives. We listened to them and we took care of them as best we could. My patients have the kinds of voices that are rarely heard, coming as they do from a hip-wiggling drag queen or a drug-using Hispanic man who lives in a shelter, or from a welfare-dependent single mother of four who lives in her subsidized two-bedroom sixth-floor walk-up out in a remote part of the city that I will likely never see. My colleagues and I heard the stories; and in caring for our patients we created more stories, with all the small victories, the horrible deaths, the humor, and the sadness. We worked hard to be good doctors and our patients helped us become better ones as we took our tumultuous journey together.

I wanted to write a book about my patients and my colleagues and how we made it through the roller-coaster last decade of the twentieth century, how we moved from helplessly watching our patients die to being able to offer them a treatment course and a fairly normal life expectancy. In that time we saw some patients literally return from death’s door. This kind of dramatic success has not been seen in any other field of medicine, except perhaps following the introduction of penicillin many years ago. I wanted to try to answer the question “What was it like?” What was it like to care for patients with AIDS, a disease that didn’t even exist when I was in college? How did we deal with dying patients for whom we had a diagnosis but no treatment? How did we care for patients that many in society rejected, patients that many even within the field of medicine rejected? What happened in those years, when the prognosis for a patient with HIV went from nearly hopeless to very hopeful?

The advances of medicine in the last twenty years or so have introduced ever more sophisticated technology, persistent clamoring for cost control, streamlined algorithms for patient care, and a lopsided two-tiered system divided between the rich and the poor. My experiences caring for patients with HIV brought me up against some of the best and worst aspects of medicine as I tried to care for patients who often were born into bad circumstances or made bad choices or were burdened with mental illness, domestic violence, or lack of family or education.

This is a book about HIV and AIDS and an important period in the history of the epidemic, but there is more to it, as I found in its writing. The care and treatment of patients with AIDS has changed, but the disease itself has not, nor have those who suffer from it, though they have shifted further out on the margins of our society. I want to tell people about these patients and how I cared for some of them during that time at our large academic medical

Introduction 3 center in New York City. Those years and experiences changed me as well, as I made the transition from trying to help patients as they died to trying to help them live long, healthy lives.

My colleagues and I struggled to care for the poorest of the poor and the sickest of the sick, and this book follows the stories of several of those patients. But as the smothering blanket of mortal illness gradually lifted from our patients, we could see a deeper story emerging. We could recognize the tremendous value of our multidisciplinary approach and how each and every patient helped us along the way. We learned as doctors, as a team, and as people; each of us vulnerable, each of us trying to do the best we could.

In the end, it is the patients who are at the heart of this story.

I am an AIDS doctor. For more than twenty years I have taken care of many patients and I am happy to say that Stewart and Olive are doing well.

I took care of Etta. And I wish that she had taken her medication.

Chapter One fter all of these years, I still remember that egg, a half-eaten hard-boiled

egg held delicately in his dark, slender fingers. The egg had a bite taken out of it and he was looking at the egg with a perplexed expression, as if he wasn’t quite sure what he held. The whites of his large eyes shone brightly. His eyelashes were long and dusty looking. I stood next to his bed and leaned in a bit to look at him with my face on his level. He smiled at me, showing partially eroded gums and a lot of egg in and around his teeth. I wanted him to put the egg down. I didn’t want to see him take another bite of it. Please, I found myself thinking, please don’t take another bite.

The several vases in Mac’s hospital room held flowers that were long dead. Milk and juice cartons cluttered every surface. Crumbs and items from his breakfast tray, including what appeared to be most of the shell and peelings from the egg, covered the pale blue blanket on his bed. A navy baseball cap with a stiff brim sat sideways on his head. One of Mac’s friends had decorated the hat with plastic eyes and pink glitter.

I smiled back at him and said, “Hello, Mac, how are you today?”

Mac blinked slowly and I tried to avoid looking at those teeth. His long lashes rested on his cheeks. “Hello, doc.”

“Can I sit down?”

He nodded yes and I sat at the end of his bed. I could see where his very skinny legs raised the blankets and I made sure not to sit on them. “How is your breakfast going there?”

“Oh, it’s all right, I guess.”

I watched as he slowly put his egg down on the tray. I was thinking, leave-it-there-leave-it-there-leave-it-there. He delicately picked up an empty packet of sugar and turned it over.

“How is your appetite?”

“All right, I guess.”

We were silent for a minute or so. Mac tried to pour the empty packet of sugar into what I was certain was a cold cup of coffee. Several open packets of sugar had already been emptied onto the tray.

“Are you getting out of bed?”

He smiled again and watched the sugar packet in his fingers. “Not today. Not yet.”

Silence. Mac moved slowly. It was like watching a movie frame by frame. I heard a nurse calling to someone out in the hallway. Mac turned the sugar packet again in his fingers. I sat up straighter to ease my back but I didn’t look away from Mac’s face. I wanted him to see that I was focused only on him.

“Mac, if the nurses come and help you, will you get out of bed and sit in a chair today?”

“I might.”

“Do you want to?”

He turned the sugar packet a couple of times without looking up.

“T might.”

I felt a flicker of worry. The day, my work, the rounds, the notes and meetings and phone calls, it all waited out there for me, tapping its foot. I didn’t want to feel impatient and I didn’t want Mac to feel that I was impatient. But we needed to move forward. I needed Mac to answer my questions and I needed to have him hear the words; even when I knew that he could no longer organize his thoughts the way he once had, the way a healthy man at his age should.

“Mac, I spoke to your sister Laverne and also to Briana. You remember Briana, your social worker? She spoke to Laverne as well. We were talking about whether you can go home or not.”

Mac continued to work silently at the empty sugar packet in his slender fingers.

“Mac, Laverne cannot care for you at her house. You know that, right?”

“I don’t want to go to her house.”

“Well, Mac, we can’t let you go back to your house. We can’t let you go back there to live.”

Mac didn’t say anything. I waited.

Finally, after putting down the empty sugar packet he said, “I would like to go back there, to my own house.”

I didn’t answer him right away. “I know,” I said, nodding. “I know that’s what you want. I know that’s where you'd like to be. But, Mac, for now youre just not strong enough to go there. We can’t let you go there on your own. And Laverne can’t look after you enough.” I put my hand on the blanket and felt his skinny leg.

“You have been talking about me,” he said.

“Yes, I know, we have been.” I nodded again as I spoke.

He was looking at his tray and his hand absently strayed up to brush away a piece of egg that clung to his lip. He didn’t look up.

I felt suddenly tired. It seemed clear that I was talking for me and that Mac was lost. He didn’t understand. He was being polite and saying words that would fit into the mold of our conversation. I looked at him and felt this little tug somewhere, maybe in my shoulder, maybe in my hand, to reach out to this man who no longer commanded himself, who couldn’t say anything more complicated or articulate than that he wanted to go home. Still, I had to keep going. “We talked together, Briana and I, and we talked to Laverne. And now I am talking to you to see how you are.”

He swiped again at the bit of egg on his lip. “I want to go home.”

“T know.”

He picked up a spoon and held it carefully.

“We just—we just can’t let you go back to your house, Mac. You wouldn’t be safe there on your own. You can’t get out of bed. You need a lot of care.”

“Yeah.” Mac put his spoon into the Styrofoam coffee cup and started stirring. He did seem to be listening. He blinked a few times. His eyelashes were so long.

I kept going, wanting to be done. “Mac, our thought is—and what we are going to try to do is—to get you to a place where you can get some good nursing care. I hope that if you rest a bit and get a little of your strength back, then maybe, well, let’s just see if you can get a little stronger.”

He looked up at me and blinked. He gave me a slow smile that lit up his face entirely, like someone cranking up the dimmer switch in a previously shadow-filled room. Despite the lingering presence of some egg, I could see there the sweet sexiness and charm that he surely once flaunted. I looked at that smile and sensed myself holding my breath. I smiled back at him.

Mac was thirty-three years old. Less than three months ago he had been working as a fashion assistant somewhere near Thirty-fourth Street and in the evenings whooping it up downtown with a pile of friends. I had just told this thirty-three-year-old man that he needed to go to a nursing home. He smiled at me and as I smiled back I thought, oh damn, this really stinks.

“Mac,” I said, “were going to talk some more about this. Have a little more breakfast, OK? Pll see you later.” I saw that he’d looked back down at his tray and his fingers strayed toward the egg as I left his room. I shook my head and looked at the polished gray linoleum floor. What was happening? How had this happened?

But there it was: 1992 at one of the most prestigious medical centers in the city of New York, even in the whole country. The AIDS epidemic was roaring through the big cities in the Northeast, clustering in Miami and Atlanta, and ravaging the gay populations of San Francisco and Los Angeles. I was seeing Mac on rounds on one of the first days at my job as an attending physician on the HIV service at one of the New York—-very—big—deal hospitals, an Ivy League—incredibly—smart medical center. I had joined the staff of the Center for Special Studies, the young HIV/AIDS clinic, and ’'d assumed the care of 130 patients, ten of whom were in the hospital. There were three full-time and three part-time physicians caring for five hundred HIV-infected patients at our clinic. No one wanted to come to a clinic with HIV or AIDS in its name. No one wanted to be associated with such an awful diagnosis; the Center was thus named to protect our patients. People who had tested positive for the virus came to our clinic that had started as a one-room outpatient site three years prior. The Center itself had opened in 1991 after a beautiful renovation of the entire top floor of the hospital. We shared the space with the group doing clinical research on some of the various HIV medications that were in development.

Our inpatient floor operated twelve floors below the clinic. Before seeing Mac in his hospital room, I had seen five others so far that day. I’d seen Nilson of the perpetual scowl and John of the wondrously immaculate manicure. Both of them had Pneumocystis pneumonia. I'd seen Yolanda with raging herpes simplex and Hank who, while nearly falling asleep, was asking me for more morphine. Admitted for multiple complaints, Olive was undergoing tests but didn’t seem to have anything wrong at all.

All ten of my patients in the hospital had AIDS, and half of them were dying. In 1992 no one knew how to treat patients with AIDS. We’d made some progress recognizing and treating some of the opportunistic infections that we saw—infections that take advantage of a weakened immune system—but often the patients came into our offices and emergency rooms with problems we’d never encountered and had no idea how to treat: weird rashes or inexplicable shortness of breath; sudden inability to walk or rapid worsening of eyesight. Maybe some of this would become routine; we didn’t know. The epidemic was moving into its second decade and still our emergency rooms and hospitals held too many dying patients for whom we had no diagnosis other than AIDS.

Mac’s soft, doe-like gaze stayed with me as I sat down at the nursing station. The guy could barely feed himself. His thoughts and words seemed like those of a man in his nineties, not his thirties. He couldn’t get out of bed but he wanted to be in his own apartment. His thoughts were slow and disorganized, but essentially he wanted what it is so natural to want. Especially in times of stress or fear or anxiety, we all want a little corner of some place to have as our own, a quiet haven or sanctuary. No different from anyone else, Mac wanted his familiar walls around him, his familiar window and curtains and cat lying on the Oriental rug. But he couldn’t get up on his own. He couldn’t get himself a glass of water or take a shower. He couldn’t eat and he couldn't appreciate how totally helpless he was. So I talked to him about nursing homes. I talked to him about getting stronger. It felt dishonest to me. I smiled and looked into his face and did not tell him that it was completely unlikely to think that he would ever go home. I did not tell him that we had nothing further to offer him here at our big, important hospital.

His mental deterioration made him docile and quiet. He didn’t rage or scream. Perhaps this made the acceptance easier in some ways, for his family and for him. But the horror of his progressive decline was hard to take in. His illness had forced changes in his life that none of us would have imagined. He wore diapers. When the nurses helped him up to sit next to the bed he needed to have a sheet wrapped around him and tied to the back of the chair so that he would not fall out of it. He could no longer brush his teeth. He didn’t have pain. He could eat a little, when he was up to it, but a meal seemed to take hours and he left much more on the tray or the bed than he actually ingested. He had AIDS, that’s all we knew; no other specific infection or cancer or stroke or anything that we could pin our puffed-up medical opinions on. A scan of his head showed only a vast shrinking of the undulating matter of his brain, with big, dark blackness where there should have been functioning white matter. And for this we knew of no treatment. So we watched and the nurses watched and those who loved him watched helplessly as his condition worsened and the man they knew faded away.

At the nurses’ station my colleague Stan sat writing his progress notes. One of the people on his inpatient list was a twenty-six-year-old gay man named Edward, whose parents had come this morning from Florida because he was dying. His partner had died a year ago and now he was on the same path. Pd seen the parents earlier in the hall and they both looked fragile and dazed. Such a nice guy; quiet, friendly, unassuming, and in the last four months Edward had lost more and more weight and never received a diagnosis beyond advanced immune suppression. The nurses really liked him and could not have been more kind to the parents. Stan struggled with Edward’s approaching death as well. There were scans and blood cultures and specialist consultations, but Edward had AIDS and that was all we really could say.

“How’s Edward?” I asked Stan as I sat down next to him and pulled Mac’s chart from the rack.

“Dying. Morphine drip.” Stan didn’t look up from writing in the chart. There were three other charts in a pile next to him.

“How are his parents doing?”

“Mother’s a wreck, father doesn’t talk.” He lifted his head a bit and wiggled his pen in his fingers, still looking at the chart where he’d been writing. “They are so sweet, so... ,” he paused, “so nice. They asked me if he could get some ice cream with his lunch. The guy hasn’t eaten in probably five weeks. I said, sure, of course he can have ice cream.” He wasn’t looking at me as he spoke. He shook his head. He gave what Id call a half laugh. The half laugh over something so terrible it’s come around to being funny. But it’s not funny.

“How long has he been on the morphine drip?”

“Just since last night. But I don’t think he’s going to need it for very long.”

“Has he spoken?”

“Nah,” Stan said, now looking at me. “He can’t really talk at this point, he barely opens his eyes.”

“Oh brother.”

“Yeah.” He looked back down at his chart and started writing.

I sat next to Stan and looked at the chart in my hands. It had Mac’s identification label stuck on the spine. A maroon plastic chart with all the data of a man’s illness inside.

Suddenly there was a huge crash out in the hallway and the sound of breaking glass; a man yelling and a woman calling loudly for help. Everyone around me jumped up and looked toward the hallway. It seemed that all the people started yelling at once. The clerk grabbed the phone and, dialing furiously, called, “Where’s security? Where is security?”

Stan quickly moved into the hall and shouted, “Dennis, get back in your room!” As I followed Stan to the hall I heard him say, “Broke the fucking window.” He sounded surprised and he walked quickly toward the crash.

One of the nurses rushed toward us from down the hall and breathlessly said to the clerk, “Call security, and call Dr. Berry, stat. That Dennis, that guy, Jesus, he scared me. He threw his chair into the window. There’s all glass in the hall. Damn that guy, he is like some kind of wild man. Judy, do you have any Haldol in your drawer?” She was breathing hard and put her hand on her chest over her blue scrub shirt. Her dark red hair had been pinned up and now fell in locks around her face.

Down the hall, the guy, Dennis, stood talking to Stan, who was at least a foot taller. Dennis’s wrists trailed the long gauze restraints that had previously tied him to his bed. His hair and beard needed a trim. He wore two hospital gowns, one of them on backwards, and his feet were bare.

1?

“My fucking lunch!” He suddenly yelled up into Stan’s face.

“OK, Dennis, OK, your lunch is coming,” Stan said in a cajoling, friendly voice. “Dennis, just get back in your room now. Dennis, come on, buddy, there’s glass all over the floor.” He gently put his hand on the patient’s shoulder and walked him back into his room. Stan looked down the hall and saw me and raised his eyebrows. He gave an impressed nod of his head: the window really was broken.

I saw the cart with the lunch trays parked outside another patient’s room three doors away. Instead of waiting for his lunch to be delivered, Dennis had thrown his chair through the window of the door to his room. It’s always possible that they’d skipped him and not brought him lunch. Maybe he had a test scheduled and they hadn't brought him breakfast, either. Maybe, maybe. I imagined Dennis in a line at the Social Security office or at the office for Medicaid benefits. I remembered the time years ago when I went to the Social Security office myself because they'd confused my number with someone else’s. I stood in line for over two hours to get to the woman who finally helped me. How would Dennis do in a long, snaking line like that, seeing the people behind the glass, the ones who were supposed to be helping, as they talked and laughed among themselves and seemed to be doing any number of random things: copying papers, talking on the phone, writing on a pad of paper, and basically ignoring the line on the other side of the glass? Pd been grumpy and impatient after two hours and I now shook my head, smiling to myself, thinking about a guy like Dennis waiting in that line. I thought of flying chairs and broken glass. At the Social Security office all the chairs were fastened to the floor and the glass divider between the office workers and those in line was about a foot thick. Now I knew why.