I suspect that some people in the 1917 Clinic waiting room the day the EMTs wheeled in our cadaver patient still remember the moment. They recall looking away in an effort to show respect or offer the dying some dignity, or feeling a panic that tore at their soul. Most could not help but look past the taut arms of the stretcher-bearers and into the patient’s gaunt face.
A first glance is mere curiosity—what stops us when we drive past a car accident. Then comes some engagement: Do I know him? Is he breathing? Within seconds comes recognition and understanding. We know where we are, what we’re seeing, what it means. In the faces of the suffering, those who already had tested positive see a reflection of themselves and their future. For those infected with the virus, caring for infected loved ones was once described as “looking-glass love.” They saw what was ahead for them in every fever, every open sore, every form of torment. Most of them loved well enough to continue providing care despite their own illness.
For clinicians fighting the disease, the faces we saw became our reason to press on. Every face came with a name, and every name came with a story of love and courage, pain and staggering loss.
There is a power in dying that deeply affects most of us who care for patients with end-stage illness. To see them and hear them and hold them is to know: There’s no time to waste. There are no second tries. There is only the best shot we can take, however long the odds. When it doesn’t work, there’s frustration and anger, sometimes guilt or self-blame, almost always a searing grief—and grief morphs into the energy that drives us back into the search.
Before we opened the doors of the 1917 Clinic to a flood of HIV-infected people, I had experienced healthcare and AIDS mostly as two separate interests or communities, two different worlds. Healthcare was about science and specialization, clinical precision and discovery in spotless labs and certified wards. AIDS was about the streets, gritty and tough, about patients who presented in our waiting rooms so late in their illness that most of what we had to offer was sympathy and a bit of palliative support. Our outreach staff came back with reports from apartments where sick friends cared for even sicker friends, where they’d noticed a mortuary phone number scribbled on a sticky note.
For me, AIDS was also my introduction to vast numbers of gay men, many of whom had become dead to their families when they explained (“came out”) their sexual orientation. Now they were dying again.
I was a straight, married, Jewish doctor in a mostly Christian, socially conservative state, in a country whose president knowingly went years refusing to publicly speak the name of the disease that was killing my patients. Even through the rosy glow of my optimism and with funding still arriving from our research grants, I was seeing more and more what didn’t work in American healthcare. I was struggling to ensure care for my patients, many of them social and religious outcasts who viewed the medical establishment with skepticism because the gay community historically—and many of my new patients personally—had encountered layers of refusal built on stigma and shame when seeking medical care.
As the virus spread, the government’s faltering willingness to recognize the epidemic bred new suspicions in the gay community. Rumors and ignorance took the place of science and medicine. Suspicions easily gave rise to fear, and fear bred anger—anger that their lives were being cut short (most were in their twenties and thirties), anger that their doctors seemed powerless, anger that the nation didn’t seem to care. They heard the whispers—“They’re getting what they deserve”—and the sermons about God’s justice being delivered through the plague.
In a sense, I was drawn to the crisis precisely because it was a crisis. I wanted to fix it. I wanted to do what wasn’t being done. Each morning I rallied my team, most of whom had no more experience in such chaos than I. Each day that we could keep patients alive was such a cause for celebration that we turned that quest into a clinic mantra: “Birthdays are our business.” And each night, I would slump into my office chair or trudge toward home wondering, What the hell am I doing here? In the ungodly confusion of this crisis, what role can I play? Slowly, I was coming to realize that I was neither Sherlock Holmes nor Superman.
At best, I hoped to alter my patients’ place on a sort of spectrum of mortality. In the early years of the epidemic, we only imagined that there was a bright end of the spectrum where patients would survive AIDS altogether. In the meantime, we fought like mad cats to keep patients in the middle range of the spectrum, where they were responding to treatment and enjoying months or years of health before the disease overtook them. The reality was that we spent a lot of time at the dark end of the spectrum where patients died swift, hard deaths following slow, brutalizing sickness.
I entered medicine to be a healer, but in the early days at the 1917 Clinic, it sounded hollow to call myself that. I was trained to cure, but I had no cure for AIDS. I was trained to fix, but I couldn’t fix these patients. I was grasping for whatever I could do for them, their parents, their spouses and lovers. It was not in my makeup to quit: “Finish what you start,” my dad always commanded. You keep pushing, you figure something out, you find some magical solution—or else you get beaten.
So I stayed, and some remarkable, tireless, committed colleagues stayed with me. On difficult days, we did get beaten; on even more days, we felt beaten. But we didn’t quit. We joined our patients’ support teams, if they had one. Their lovers (who often were already our patients too) became our friends; their mothers became our colleagues. While maintaining our role as a clinic and not just a hospice, we also embraced the goal of assuring our patients comfort and dignity through their lives and at their deaths. At some ill-defined but obvious point, we reached a fork in the road where I became less a doctor and more a rabbi, when the clinic staff and I stopped pushing the medical and switched to the spiritual. Instead of trying to get someone well, we would just try to ease their way, whatever that meant and whatever it took.
Ed had lived in San Francisco in the early 1980s and worked as a waiter and part-time chef. What he could do with food was magic.
Like so many other residents of the neighborhood called the Castro, he was diagnosed with the gay plague and suffered illnesses that became known as AIDS’s calling cards: Kaposi’s sarcoma, then pneumocystis pneumonia. Ed became my patient at the 1917 Clinic in spring 1988 after moving back to Alabama to be closer to his family.
Ed was a bearded, lean guy whose eyes brimmed with intelligence and humor. He claimed that years of frustrated idealism had left him a cynic, but I could see he still held on to his idealism as intensely as he held on to life itself. His dry wit was endearing, and the food he created was seductive.
Ed was one of the first patients in Birmingham to take azidothymidine (AZT), on which so many hopes were pinned in those years. The drug was initially developed at the National Cancer Institute (NCI) in 1964 as an anticancer agent. At that time—only sixteen years after the discovery of DNA—researchers hoped that by mimicking the normal building blocks of DNA (nucleosides), the drugs would confuse the replication process and hinder cancer cell growth.
Like most of the “nucleoside inhibitors” developed as anticancer agents in the 1960s and 1970s, AZT didn’t work so well against cancer and was put on the shelf. When HIV was discovered as the cause of AIDS, researchers at Burroughs Wellcome (BW), working in concert with Sam Broder and his colleagues at the NCI, determined that AZT was one of several nucleoside drugs that had activity against HIV. The first Phase II study conducted by BW showed that the drug dramatically reduced mortality from AIDS over six to twelve months compared to a placebo. In 1987, the drug was the first to be approved in the United States for use against AIDS.
Within the early-epidemic national AIDS community, led mostly by gay artists and activists, original expectations for AZT were unrealistically high. Words like “solution” yielded to words like “cure.” It was the first and therefore the best hope at the time, and hope—desperation?—soared beyond the bounds of either science or common sense.
In those days, AZT had to be taken every four hours around the clock. Side effects were common, the result of the drug inhibiting replication of normal cells as well as the virus. Ed experienced most of them: nausea, profound anemia, fatigue, and neuropathy (pain, burning, tingling, and numbness, especially in the hands and feet). And yet he still managed to work as a chef and server at A Social Affair, a Birmingham caterer that I often hired to provide food for department events. The consummate “foodie,” Ed delighted in sharing his culinary specialties and expertise. He even managed to teach a kitchen amateur like me a few things, such as when to cook with olive oil instead of the butter I had favored since my undergraduate days in New Orleans.
Ed loved life even more than he loved food, and he was determined to sample both for as long as possible. Even when a medication made him violently ill, he kept taking it; like most patients at that time, he kept telling himself he could stand it until a better treatment came along. In Ed’s mind, a better drug—or even “the cure”—was always just around the corner. He kept that sunny outlook even as his white blood cell count tumbled lower and lower, a complication of AZT treatment. With no white blood cells, he would have no ability to fight even a common cold, let alone more serious ailments.
Things seemed hopeful heading into the holidays at the end of 1990. We’d kept Ed alive for another season of office parties where the star of the catered tables was his signature bruschetta topped with sun-dried tomatoes and cream cheese. Christmas Day found my family and me in Atlanta for the bris of my eight-day-old nephew, Alec. Conducting a Jewish ritual circumcision on Christmas played right into my warped sense of humor—and so, in my best Santa Claus voice, I greeted all the relatives with a hearty “Merry Bris-mas! Merry Bris-mas!”
Somewhere midcelebration, a call came from Birmingham. A tearful hospital colleague told me that Ed had just died. He’d been found by a fast-moving bloodstream infection that his compromised immune system couldn’t fight off. One moment I was laughing at my Bris-mas joke; the next, I was yanked off the mountaintop.
Without explanation to anyone, I went out for a walk to compose myself. When I returned to the family gathering—surrounded by generations of loved ones, from baby Alec to his grandparents and great-uncles—I could not get my mind off Ed. How many Christmases and christenings and bar mitzvahs, birthdays and weddings and anniversaries, had AIDS stolen from him and his loved ones by taking him so soon? How many Eds were already in our system, and how many more were waiting, too frightened to come for testing and discover that they were HIV-positive?
Beneath these questions loomed a larger one that I resolutely pushed from my mind. If it dared rise to my consciousness, I’d slap it away again. This time, it came up full throttle: How many more losses like this could I handle?
Susan Wilder certainly didn’t need to work at the 1917 Clinic. She “came from means,” as my parents’ generation would say: Her husband was a successful businessman, and they lived in an old-money hamlet south of Birmingham. Susan’s four children were in high school and college when she decided she wanted to do more than volunteer work. So she went back to school and got her degree in social work, for which her quick mind and big heart were ideally suited.
The first social worker hired at the 1917 Clinic, Susan was a child of the sixties who continued to live out that generation’s rhetoric about service to humanity. She wore her shoulder-length, dark hair loose around her still-girlish face. With her upbeat, can-do attitude, Susan was one of the most positive people with whom I ever worked.
Each workday, Susan drove to the clinic from her tidy suburb to help AIDS patients manage their decidedly untidy lives. She counseled the twenty-something Caribbean man with a student visa who was facing the prospect of returning home with HIV and without vital medications. For the sixty-something farmer who got the virus from a blood transfusion and was extremely hard of hearing, Susan would shout out medical information, including explicit safe-sex guidance that made others giggle or blush. When a fifty-something construction worker and former IV drug user was dying, Susan somehow got him into perhaps the only local nursing home that would take a patient with AIDS, and then helped train the staff there that gave him end-of-life care. (In thanks, the man bequeathed Susan his prized possession, the Bible he’d been given in his twelve-step recovery program.)
Early in 1989, a thirty-year-old woman named “Jamie” came to the 1917 Clinic with needle-tracked arms, a relentless pneumocystis pneumonia cough, and a new baby girl. Susan instantly took to Jamie and, to this day, when she talks about Jamie, her voice takes on a motherly tenderness.
As Susan tells the story, “Jamie had lived a very tough life. She was intelligent and wellspoken, and she told me she had come from a fairly well-to-do family in New York City. She rebelled and ran away from home, and she was on the streets at about age thirteen or fourteen. Her parents disowned her and she never saw them again. She panhandled and got into prostitution and drugs. She hooked up with this guy and got pregnant, decided to have the baby, and the two of them moved south and wound up in Birmingham. After Jamie had the baby and she and her daughter were diagnosed with HIV, the baby ended up in the hospital in intensive care and the guy disappeared.
“Jamie was so proud of the baby. She was trying to make changes in her life; she would show up for her clinic appointments, so appreciative of anything we did for her. It was devastating to her that the baby was sick. Jamie couldn’t stand going to the hospital and seeing the baby suffering with all the tubes and wires attached to her. She hated going by herself, so I’d go with her.
“The baby didn’t live very long. When she died, Jamie was devastated. There was no money to bury her, but I called around, and a lovely local funeral home donated a service. They set out chairs and put on recorded music, and there was a tiny white casket. The only people there besides Jamie were Dr. Saag, our clinic nurse coordinator, and me. It was heart-wrenching, but Jamie was so thankful.
“With the baby gone, Jamie stopped taking her medicine. She stopped coming to the clinic regularly, and then she just disappeared. About a year later, I got a call from a doctor at a New York City hospital. Jamie had had my card, with the clinic’s phone number, in her pocket when she collapsed on the street. She later died in the hospital, and the doctor was calling to ask me if there were any family members who could bury her. I couldn’t help because she never even told me her family name. So she was buried in a pauper’s grave.
“Jamie had tried to do the right thing,” Susan concluded, “but she was just so lost. The drugs kept getting in her way.”
Burnout runs rampant among AIDS medicine professionals, which Susan knew both from professional training and personal experience. To help her 1917 Clinic colleagues fight that, she used to invite us to her lovely home for pool parties, croquet matches, food and drink, and sing-alongs.
Susan had been a clinic mainstay for nearly six years when, one day in 1994, her husband, Geoff, died of a heart attack while jogging. Someone had to step in and run the family business; Susan did, even though it meant leaving the clinic.
The only reason I could abide the worst times—watching helplessly as patients died and loved ones grieved—was because I worked with colleagues who were beyond imagination. The people who’ve worked in the 1917 Clinic, Susan among them, are angels in this world. And through the decades in this work, I’ve seen that every clinic, in every community, is filled with angels like Susan and our team. They are living proof of something we all want to believe: that when horrific events occur, good people do good things simply for goodness’ sake. What lies beyond magic is, I think, miracle.
Through decades of losing patients, I’ve grieved with their spouses, lovers, siblings, children—but I have felt the most profound pain for their parents. I’m sure my pain relates in some ways to the fact that I’m a parent myself. If I imagine what it would mean for Amy or me to hold Harry or Andy or Julie as they took a last breath, I am beyond distraught—it’s agony even as imagination. As my kids would say, “I can’t even go there.”
Looking into the faces of the dying patients’ parents—especially the mothers—is what tears me up the most. They’re losing a son or daughter and, as if that were not horrible enough, they’re losing them to a horrendous, stigmatized disease. For parents still in denial about a sexual orientation or lifestyle that may have opened the door to the virus, standing at their child’s deathbed represents proof positive of truths they long avoided. The suffering is incomparable, but so is the love.
When parents are racked by the pain of losing their child, I encourage our staff to be there for them, to offer support and strength. If we can stay composed while they are in agony, that can be helpful. But when we who’ve tried to sustain that life watch it finally flicker out, we also grieve. When the parents weep, there is no sin in weeping with them. A collective, sobbing hug may be what enables us all to go on.
I remember nothing about “Kevin’s” father except that he never came along for Kevin’s clinic visits. But I have clear memories of his mother, “Margaret,” who brought Kevin in when he was so limp and depleted he could barely stand. Though he was only in his late twenties, months of wasting and fevers had left Kevin looking much older to me. But by the way Margaret gazed at him, it was clear she still saw the slight, sweet southern boy she had always known.
It being autumn and us living in Alabama, I made some idle comment on the seasonal preoccupation, Crimson Tide football. Kevin perked up appreciably. He was a huge ’Bama fan, his mother said; though he never had been able to spare the money to attend a game in person, he never missed a game on TV.
Kevin’s chart showed that almost every form of treatment had been thrown at him and still he was failing, his blue eyes sunken and his face starkly pale against his dark hair. I remember thinking: What do we have to lose? Maybe he has adrenal insufficiency. Let’s try a course of steroids; it might work. I gave Margaret a prescription for him and asked them to come back in a week.
A week later, it was as if we had flipped a switch. Kevin was like a new man, striding into my office unassisted and wrapping me in a big hug. “I can’t believe this; it’s like you gave me my life back!” he crowed.
While he was regarding me as a miracle worker, I knew that the steroid booster effect would last only so long, a few months at best. I figured, while he was feeling so good, I’d show him the real deal on miracles. I knew he was pining to attend a Crimson Tide game, and I knew people who knew people. So we arranged two tickets for Kevin and Margaret in seats just behind the Alabama bench with a great view of the sidelines action as well as the game. On a glorious November day, surrounded by more than 70,000 other rabid fans, Kevin watched the Tide roll to a 37–14 victory. He showed up to his next visit still elated and brought me a souvenir, a Crimson Tide baseball cap.
After a few stable weeks, Kevin’s health took a nosedive. I had no bullets left in the gun, nothing more to try. When they came back to the clinic for what I expected would be the last time, Margaret felt it too. She let go of Kevin’s hand long enough to rise and give me a long, wordless hug.
Kevin faded in and out, and was spared knowing that his team lost to Miami in the Sugar Bowl on New Year’s Day. But through it all, Margaret was steadily at his bedside, and somehow I’m sure that was what Kevin knew.
I still have Kevin’s crimson hat hanging in a place of honor in my office.
Every day, it seemed, another UAB colleague learned of an acquaintance, friend, or relative who had been diagnosed HIV-positive. But for one of us, the epidemic hit particularly close to home.
In 1989, Jim Raper’s partner, Steve, came down with pneumonia. Before Jim and Steve became a couple, Steve had been with a partner who later died of complications from AIDS. “So we kind of knew what was happening,” even before Steve tested positive for the virus in 1989, Jim says now.
Jim took a position as a night shift nursing department administrator so he could have days with Steve and continue his doctoral studies in nursing service administration (the man is indefatigable). Steve was enrolled in clinical trials right away, but “there really wasn’t much medicine at that point,” as Jim recalls. “There was AZT, which Steve took. And he took what was then an experimental drug, didanosine or DDI, which had to be chewed, two tablets twice a day, and they tasted absolutely horrific. But Steve used to say he’d eat shit on a Ritz cracker if he thought it would keep him alive.”
As an “AIDS doc,” I was a walking pharmacy. If this didn’t work with a patient, maybe that would. They’d be on a promising protocol for a week, everything would collapse, and I’d be ready with a new option, a small adjustment, a big change—until I was out of options, and they were out of luck. Needless to say, I developed a special bond with patients who were enrolled in the drug trials. Life was a drug train, and we rode it together.
As an extra safeguard for their privacy, many of these patients entered trials under code names. We had a “Peter Pan” who was hardly a small child in tights. We had a “Roy Rogers” with neither hat nor horse. And we had a “Pearly James”—quite a name, especially for a man—who never will be forgotten at the clinic.
Pearly’s case was typical of the roller-coaster rides endured as we sought drug combinations that had efficacy against the virus without poisonous side effects for the patient. He was enrolled in a clinical trial to compare results from monotherapy, a single AIDS medication, to those from dual therapy, a two-drug regimen. When his CD4 count dipped below 500, crossing the border from healthy to unhealthy, we started him on DDI. Six months later, the protocol dictated that we add AZT—to which Pearly was totally intolerant. His red blood cell count rapidly plunged so low that we wanted to give him a blood transfusion, which he refused even though many days he was so weak that he could barely walk a few yards without rest.
Hoping for the best, we stopped the AZT and substituted a drug in the same class, stavudine. Pearly’s health rebounded; his CD4 count rose to the 700s and stayed there.
Amid all the dying and all the failure that it represented, amid all the struggle to keep team morale high and desperation low, I can’t tell you how badly we all needed Pearly James.
Even sitting on a clinic examination table in a drab medical gown, Michael had presence. While I put him through the paces of a routine physical exam, he sat up perfectly straight, as if his spine and head were suspended from a string somewhere in the ceiling. When I had him follow my finger with his eyes and my hand swept to the left and to the right, his eyes moved but his body stayed perfectly still, as if frozen in a pose. Thanks to years of ballet training, Michael was the most graceful, physically poetic individual I’d ever met.
In New York City, Michael had danced with such prestigious troupes as the Joffrey Ballet and the National Ballet Company. By late 1987, progressive fatigue and shortness of breath forced Michael off the stage. He and his partner, Evan, moved to Birmingham, aiming to teach dance. Evan took up teaching, but Michael’s shortness of breath got worse until he wound up in the emergency room with a diagnosis of pneumocystis pneumonia. He was started on anti-pneumocystis therapy and breathing treatments, but his condition worsened. He was transferred to the intensive care unit and put on a mechanical ventilator.
Anyone who’s had that experience—a machine breathing for you but never quite relieving the feeling that you’re gasping for air—knows that one day on a ventilator can feel like a week. Ventilators are a way to keep someone alive, but barely. Michael was, in fact, on the ventilator for nearly six weeks. Most of that time he was totally paralyzed by Pavulon, the drug we administered to keep muscle contractions from interfering with the ventilation.
After Michael rebounded and we got him off the ventilator, we discussed the experience. The man who had flown onstage, who had soared above the symphony and heard thunderous ovations, admitted that it had been difficult to be totally aware of what was going on around him yet unable to move, with a tube down his throat and the perpetual sensation of breathlessness. I asked him how he got through six weeks of this normally intolerable process. His response floored me.
Michael had asked the nurses to tell him every morning when it was 5:30 a.m., the time his day would have begun in his New York City apartment. As soon as the nurses gave the word, Michael began imagining himself performing his old morning routine. He visualized it all in timed detail: He’d slowly get up, then do stretches, then go to the dance studio—and there, rehearse every step of every dance routine he ever had performed. In that hospital bed he was prone and intubated, but in his mind, he was performing intricate, athletic choreography for hours at a time. As the ventilator pumped out twenty breaths per minute, Michael used its cadence as his metronome. He would “dance” a certain number of steps per breath for an andante number, then twice that many for an allegro piece. While the medical team was tending to his body, Michael was sustaining his spirit.
We became dear friends, Michael and I. As most patients did, he responded very well to AZT initially. His p24 antigen—the crude marker we used then to gauge the amount of virus in the bloodstream—fell to undetectable levels. Michael regained enough strength to dance again for his own pleasure, though not professionally. When he developed anemia (another common AZT side effect), we tried a new drug called erythropoietin, a naturally occurring blood hormone that stimulates the production of red blood cells in the bone marrow. He did well with it and required fewer blood transfusions to keep his blood count in a reasonable range.
One day in fall 1991, when he had been my patient for about four years, Michael came to the clinic with abdominal pain and fever. His CD4 count, which the AZT initially kept fairly high, had dropped into the teens. I feared that the cause was mycobacterium avium complex (MAC), an opportunistic infection common among people with profound immune deficiency from HIV. We admitted Michael to the hospital for a workup; his mother, Peggy, with whom I also had become close, traveled from their native Louisiana to be with him and Evan.
By Michael’s third day in the hospital, his abdominal pain was severe. I suggested a procedure that might help us diagnose and relieve it. But Michael had decided, with his partner’s and his mother’s blessing: no procedure. No more was to be done.
I ordered extra morphine to ease Michael’s pain and sat at his bedside for the last time. How utterly cruel, I thought: After he willed himself to live for all those weeks on the ventilator, now he’s going to die, and we won’t even know the cause. I apologized to Michael for that—and without hesitation, he said that if it would help us treat others in the future, he’d gladly give permission for us to do an autopsy. He said it without emotion; I cannot even remember it that way.
Michael’s death was peaceful. The following day, the autopsy showed the cause of his pain was an intestine so riddled with MAC infection that it had telescoped in on itself and become obstructed. We did not know this possibility before; Michael’s autopsy equipped us to quickly recognize and manage it in future cases.
To the last, Michael made the most of his artistic calling. In life, he had delighted audiences with that exquisitely honed dancer’s body. In death, he gave us what was left of it for the benefit of others.
I met Carol Ann Linn in 1987 when I was an ID fellow at UAB and she was a nurse working for the American Red Cross. We put together a week-long crash course for police and other first responders, “AIDS 101,” to bring them up to speed on everything from the needs of HIV/AIDS patients to the safety of the US blood supply. The thirty-something mother of two sons, Carol had a sweet temper and a gentle Alabama accent, and people took to her immediately. While I went on to run the 1917 Clinic, Carol moved among nursing jobs, including at UAB.
In 1994, when I needed a nurse to fill a temporary position, Carol got the assignment and joined the ranks of our staff heroes. To this day, Carol plays down her role: “Because I was coming off several years as a psychiatric nurse, the 1917 Clinic patients knew more than I did about HIV treatment. It was their life, they ate and slept and breathed it, so if I didn’t know something, they were more than happy to fill me in. They were just eager for any healthcare provider that was willing to work with them; I had never been in a setting where the patients so valued the staff.”
I’ll say what Carol is too modest to say. The patients also valued her for the same reasons I did, and still do: She is a generous, caring person and a gifted, conscientious nurse. When her temporary assignment was nearly done, I asked if she would come to work at the clinic long term, and she turned me down. Sweet but steely, she noted that our clinic staffers worked ridiculous hours “and you don’t even pay well.” I came up with a pay increase, and that helped her explain her decision to others. But more than anything, Carol joined the clinic—and is still there, nearly two decades later—because she cares so much about the patients.
On Carol’s desk sits a picture of a movie-star-handsome young man in a tuxedo. That’s Andy, one of the first patients Carol worked with at the clinic. He was about ten years older than Carol’s own firstborn, and it’s literally true that Carol and Andy became as close as family. You can hear it in the way she tells his story in her soft drawl:
“Andy was the kindest person you’d ever meet. Everyone in the clinic, including other patients, loved him; he was a social butterfly. Several years before I met him in 1995, Andy and his partner, ‘Boyd,’ decided they wanted to have a child. So they found a surrogate, Boyd donated the sperm, and they had a son, ‘Ned.’
“By the time of Ned’s fifth birthday, they wanted to have a swimming pool party for him. Andy had developed a Kaposi’s sarcoma (KS) lesion on his shin, but he was not going to let that stop him. He got a waterproof Batman tattoo and put it over the lesion so it wouldn’t interfere with his son’s party.
“Andy never complained. Even though he was doing everything we asked as far as HIV medications, the KS progressed, and soon it was rampant. There was some on his face, on his chest and back. From his waist down, it was just solid lesions. He ended up having his scrotum removed, having skin grafts on his penis, and he got lots of infections on his legs. As the KS progressed it robbed his skin and muscles of their blood supply, and the tissue died. At the clinic, when he walked in the door, people could smell the rotting flesh. At first, when they didn’t know he was hearing them, other patients would say, ‘What is that stench?!’ But after they realized, they did everything they could not to hurt his feelings. And when he would come in for me to do his chemotherapy infusion, we would spray a citrus cleaner on paper towels and use a desktop fan to blow that citrus smell out toward the waiting room in order to cut down on the odor, so he wouldn’t offend others.
“With all this progression of the KS came horrible, horrible pain. Andy developed such a high tolerance for the pain medications that we had to adjust them every month. I remember one night when Andy was in the hospital, Dr. Saag was not on service, and I was not on call but had left my pager on, just in case. Andy paged me saying he was in such unbearable pain that he wished he was dead, but the doctors at the hospital would not increase the dose. They didn’t know his case and what a high tolerance he had developed to the pain medications, and they were afraid that giving him more could kill him.
“I went in to the hospital and talked to the staff, but they said they could not prescribe more. So I paged Dr. Saag, who was at home with his family, and he said, ‘I’ll be right there.’ I went back to the clinic and got Andy’s medication records, and Dr. Saag was able to show the records to the hospital team and persuade them to increase the dose.
“After the medication was administered and Andy’s pain started to ease, he asked Dr. Saag to sit on one side of his bed and me to sit on the other. He wanted us to stay awhile and pray with him. He prayed that if it was God’s will, he would live through the night, but if not, he would not be in pain anymore.”
Andy survived that crisis, and a few more. Carol was relentless about finding ways to help him deal with the KS and the pain. When Ned had a baseball game, Carol would go to the ball field with Andy to help manage his wounds and dressings and wheelchair. When Andy attended the 1917 Clinic’s annual spiritual retreat at a national park an hour away from Birmingham, Carol went with him, “and while the other people were doing sports or crafts, we would do his IV medication,” she recalls, as if there were nothing extraordinary about that.
What Carol did find extraordinary was Andy’s ability to live so joyfully in spite of everything. “One night while we were at the retreat, he called home and asked Boyd if he could say goodnight to Ned, but Ned was already asleep. So he asked Boyd to hold the phone by Ned’s face so that Andy could just listen to him breathe. And when Andy got off the phone, his face was so full of love, and he said, ‘Carol, isn’t that the sweetest sound in the world, when your baby is sleeping soundly?’
“Andy was a good father, a good partner, a good son, and a good friend. And he was a good patient, no matter how the disease ravaged him.”
Andy died April 14, 1998, during a brutal season for the clinic: A lot of patients were developing resistance to the only drugs we had for them, and within a matter of a few weeks, fifteen or sixteen had died. “It was really hard on the staff,” Carol says now, “because it was the first time in years when we had had that many patients dying.”
Carol still talks by phone occasionally with Andy’s parents. When she calls, Carol says, Andy’s mother still cries with fresh grief “even though he’s been gone now for so many years.”
Carol still keeps Andy’s photo on her desk, she says, because “he was just a special guy, and he made me understand what’s important. For Andy, what was important was the here and now, and living your life to the fullest you could live it.”
Carol still kids me about something I said when I hired her. She was fretting that she hadn’t started an IV in a while, and I said, “Carol, I can teach a monkey how to start an IV—but what you have can’t be taught.” She can joke all she wants about the first half of that statement; I hope she knows the truth in the second half of it.
Carol stayed at the clinic even when a loved one accused her of having “a death wish” because she worked with AIDS patients. Carol stayed at the clinic even though, when other parents learned where she worked, many wouldn’t sit with her at their kids’ ballgames or let her sons sleep over. Carol has stayed at the clinic through the years as our caseload has changed from mostly well-educated, often well-off people who could champion their own needs to people with less knowledge and significantly fewer resources to bring to the fight.
“So many of our patients now have little or no support system,” she says, “but they can always talk to me. I don’t always know what we’ll be able to do. But I always say, ‘Tell me what you need.’”
“David” was striding through an East Coast airport wearing his airline pilot’s uniform on his way to captain a flight. Partway down the concourse, he could not catch his breath. After an examination revealed pneumocystis pneumonia (PCP), David retired from the airline. He moved home to Tuscaloosa to work as a private pilot and live with his mother, “Eva.”
David was among the first patients at the 1917 Clinic. He became a friend and also served as my unofficial mentor and guide to the gay community, a population from which I drew many of my patients but about which I was largely ignorant. I knew that some of us were straight and some of us were gay, but it had never meant much to me. David changed that.
Because he knew I meant well, David patiently answered my questions, including some that I now realize may have seemed daft. I distinctly remember the moment when I hit him with that clueless-straight-guy classic: “So, David, when did you know you were gay?” He smiled knowingly, paused, and said, “Mike, I’ll answer your question, but first I want you to answer mine: When did you know you were straight?”
By answering in that way, David might have been gently mocking me—and I definitely felt my face redden. But mostly, he was trying to help me understand, honestly and viscerally. He followed up with this: “Let’s say you’re walking down a street and it’s just you, looking straight ahead. On the left side of the street is Christie Brinkley, on the right side of the street is Tom Selleck, and they’re both naked. Who will you look at?” We each knew the answers—ours, and each other’s—without saying a word.
“None of us gets taught this,” he said, looking at me kindly. “It’s who we are.”
I got it. And I so appreciated David’s ability to explain things, to serve as an interpreter among the various professional and cultural groups in which he and I both moved, that I recruited him for that role repeatedly. A former Navy fighter pilot, David was a natural in social settings, a handsome, compact man with a gregarious nature and a gift for public speaking.
As David continued to battle the PCP, hospitals in some of the hardest-hit cities—Los Angeles, San Francisco, New York—began offering patients a new therapy: inhaled pentamidine, an infection-fighting agent delivered via a costly nebulizer apparatus. David was a candidate for the therapy, as were a number of other patients at our clinic, which was then about a year old. But our shoestring operation didn’t have the money for the equipment to offer pentamidine. So when some patients who wanted the treatment threatened to march on the clinic to protest us not providing it, I was beside myself.
I vented my frustration to David: “What the f—? I don’t want news cameras covering protests outside this clinic, showing every bigot in the state where it is!” I could see how well this was going to go down in the dean’s office. Besides, I had self-righteousness on my side: “We set up this damned clinic for these patients when they were outcasts, and now they’re marching on me, on us? We are the last people on earth they should be marching on!”
Patiently, David talked me down. “You don’t understand, Mike; it’s not about you. They respect you. They like you. They like the clinic. But they’re terrified and desperate and dying, and they’ve got to do something. It’s the white coat they’re marching on. It’s the Establishment, which you represent, like it or not.”
When I first conceived of an AIDS clinic and did the math about the burgeoning epidemic, it was scary how many patients would need care. Knowing that the 1917 Clinic couldn’t serve them all, I devised training sessions for other providers called “What Every Physician Should Know about HIV.” The training was offered at gatherings of primary care physicians, medical association meetings, and hospital grand rounds. Basically it was me with a microphone, posing my questions and the audience’s questions to a patient with HIV—very often, David. Audiences were rapt as he described his background, including his hitch as a military fighter pilot, and his life since contracting the virus. He wasn’t shy about nosy questions or squeamish about clinical ones. He never lapsed into self-pity. Only occasionally would he tear up when speaking of friends whom AIDS had claimed; by then, many of the rest of us were too teary-eyed to notice.
I never will forget the end of one session when, before an audience of 500 physicians at the State Medical Association’s annual meeting in Montgomery, I asked David if he had any parting message. “We live in a very religious society,” he observed, “and most of the people in this part of the country believe strongly in Jesus Christ. If anybody was to ask me how to find Jesus, I would say, ‘You can find him at the University Hospital every day, on the sixth floor, providing care for the AIDS patients there. That’s where Jesus lives.’”
In fall 1989, when David was fighting a third episode of PCP, we got him into a study for a potent new drug. In his case, it was too potent; the drug killed off so many of the infectious microorganisms so fast that David’s lungs became inflamed and further compromised. As he struggled to breathe, we put him in the ICU with a mask to deliver more oxygen.
Nowadays, when we use that potent drug on PCP patients, we know to administer steroids in advance to protect the lungs against inflammation. In David’s day, we didn’t know that—that, and so much more.
David had made his wishes clear: “No more ventilators, Mike.” No putting him on a breathing machine when he became unable to breathe for himself—and we both knew that time might be near. Before departing for Louisville to spend Thanksgiving with family, I looked in on David and found him sitting up in bed in the ICU wearing a full oxygen mask that covered most of his face. Knowing he couldn’t speak through the mask, I said a few words and gave him a wave. David raised a gaunt arm and flashed me a thumbs-up sign. At that moment, I could see him in his flight suit, in his F-14 cockpit, in the clouds. On his last mission.
Two days later, the hospital telephoned me at my parents’ home. I knew it was news about David, so I took the call in the back of the house, where my relatives wouldn’t see me sobbing.
I suppose it’s a confession of some kind that, as a straight, happily married man, I want the world to hear me say I really loved David. Love is the only right term. He was a great guy. All these years later, when I think of him, I wonder “what if?” What if David, and others like him, could have held on for another five years? What if the triple-drug cocktail we call HAART (highly active antiretroviral therapy) had been developed sooner? What if my progress in the lab had been faster, or if I had worked harder or smarter?
Then, I swear, I actually hear David’s voice: “Mike, it’s not about you.”
Of course that’s right. It isn’t about caregivers torturing ourselves with “what if” questions. It’s about doing the best we can do for patients, whatever that is at the time. In David’s time, while we were doing the best we could do, he and hundreds of thousands of others died.
What’s most tortuous for me when I remember David is that, years after we lost him, the US healthcare system is so, so far from doing the best we can do for other patients. We are failing, knowingly failing, and we seem unable to stop the failure. Perhaps this, too, is not about me. But I take it personally, with the same intensity I feel when I say, slowly and deliberately and without reservations: I loved David.
“Jacob” was the first Jew I took care of who had HIV. We connected through that shared identity, that sense of being lonsman, the Yiddish term for a member of our tribe. Jacob was a gay man in his early thirties from a family of modest means. He had thinning reddish brown hair that flowed down below his collar, and he wore wire-rim glasses that gave him a kind of hippie-intellectual look. Jacob was energetic, fun to be around, and constantly in and out of medical peril for the nearly five years that I knew him.
Just weeks after he was found to be HIV-positive and diagnosed with PCP, Jacob was started on AZT. He developed profound anemia; eventually, we pulled him back from that brink with blood transfusions. He then developed mycobacterium avium complex, which ultimately spread throughout his body. For the last year of his life, we could not get his CD4 count above single digits. Through it all, Jacob’s loved ones were wonderfully supportive and engaged in his care. If I saw Jacob in the hospital, odds are I also would see one or more parents, siblings, rabbis, and friends from the local synagogue he attended.
One day late in another of Jacob’s lengthy hospital stays, I was making rounds trailed by a half dozen house staff and medical students. I asked them to wait at the door as I entered Jacob’s room. What I saw was a tableau an old master could have composed for a painting called The Death Watch. The light fell just so across the bed and the still, white-faced figure in it. The mother, father, brother, and sister-in-law hovered at the bedside, leaning in with grim, watchful faces; their rabbi stood in the background providing moral support.
I could not spare Jacob’s relatives this grief, and I did not want to intrude on it. But they motioned me to come nearer, so I did, as the students looked in from the doorway. I walked to the foot of the bed and stood with them in silence.
Knowing that the family was hanging on every spike and dip of the EKG monitor as if it could be Jacob’s last heartbeat, I reached over and disconnected the monitor. I had seen too many instances where, after a patient died, the heart still might tick a random beat that would make the family think the patient had come back to life. I didn’t want Jacob’s loved ones to experience that horror on top of what they were experiencing already.
I knew there were no words, but I could not help trying. “I’m so sorry,” I said, and my voice cracked. “I’m so sorry there was nothing more I could do.”
I imagine they said something, but I was beyond hearing. I hugged Jacob’s father, I hugged his mother, and I rested a trembling hand briefly on Jacob’s forehead. Then I walked out of his room and down the hall a few paces before I collapsed against a wall, fighting sobs. I raised a hand to the medical students, signaling them to give me a minute.
I didn’t feel embarrassed about them seeing me cry, but I didn’t want to go on with rounds until we discussed it. We found a small conference room, and as best I can remember, I told them something like this:
“What you just witnessed is what being a physician is all about. Nobody is going to teach you that you should let yourself feel like this. You’ll probably hear the opposite—that you should keep a ‘clinical distance’ and find ways to protect yourself from feeling. That it will cloud your judgment or make you seem weak or less professional.
“That’s bullshit. If you don’t let yourself feel this, you’re missing out on what really matters. You want to be a healer? This is the cost. This is the essence of what we do.”
When I talk about my patients who died, I don’t always choke up. But more often than not, I do.
When one of my patients dies, it’s failure, it’s loss, it’s injustice. It’s anger about the lost potential of a talented young person and frustration that I couldn’t do more—that my magical thinking didn’t turn into magical healing, that I couldn’t will this to come out differently. I am so invested in that patient’s survival that when he or she dies—and if it’s unprofessional to admit this, too bad—a part of me dies, too.
This feeling is not unique to me. I see it in almost every qualified HIV provider, the nurses, the social workers, the nurse practitioners, the doctors. When we provide care to someone, it’s a partnership, often a very urgent and heartfelt one. When we don’t succeed, we forfeit our partner. It is a cruel loss, especially when experienced over and over.
I know the passage of time is supposed to diminish grief, but for me it also compounds the loss. This isn’t the kind of loss you feel when a colleague is leaving or when you suffer a professional or political setback; I can cope with those. This is a sense of enormous, collective loss; the almost unfathomable loss of the potential of all these people whose lives ended so prematurely. What would they have done? What could they have been? How much might they have achieved for themselves and for others? The empty spaces where the rest of their lives should have been—this is, to me, the enduring tragedy of AIDS.
What motivates me not only to stay within the healthcare system but to seek its change is here. What drives me is the truth I heard myself say in the wake of Jacob’s death: This is the essence of what we do. Any system that puts profits ahead of lives has no right to use the term “healthcare.” That it would actually be less costly, regardless of the illness they face, to treat people early and well is a stinging irony. That we would tolerate such suffering, turn a blind eye to such dying, is obscene.