Stan had barely talked to me about his childhood and family, and what little he revealed was disparaging. Born in Chicago, somewhere on the southwest side in a predominantly Polish neighborhood, he once said that he was proud of his background because he came from nothing and pulled himself up by the bootstraps to become successful; but he was also ashamed because his parents were ignorant, uneducated, and incapable of understanding him. When I met his mother and sisters—his father had died years earlier—they indeed seemed less sophisticated and not as well educated as he. Both sisters were overweight and dressed without any concern for style. His mother was a demurer, diminutive figure. Whereas Stan had cultivated a refined midwestern accent, they spoke with a Chicago twang. But there was a clear physical resemblance—the shape of the head, the curve of the nose, the wary laugh. And they were pleasant to deal with and grateful for my care and support of Stan. The diagnosis of AIDS didn’t seem to faze them.
What happened in childhood to cause Stan to harbor such ill will toward his family remained a mystery to me. Growing up gay in an immigrant community in the 1950s, where neighbors, teachers, parish priests, and even your parents made it clear that homosexuality was a sin or worse, must have been unbearable to him. Moreover, he was bright and ambitious, with aspirations that may have clashed with his parents’ expectations. Somehow he wound up at Colorado State, or “Ski University,” as he called it—a strange choice for a lower-middle-class student, though not for one who dreamed of a more glamorous world. Whatever the reasons for his deep-seated animosity, I felt sorry for his family because Stan had excluded them from his life. He also excluded them from his will.
Stan had finally come to terms with the inevitability of his death from AIDS and revised his will during the brief period after the PCP but before the CMV. Desiring some sort of legacy, he asked my advice about what to do with his investments, which were substantial. His lawyer and I sat with him at his kitchen table one evening developing a plan. On the wall behind him was a colorful elongated painting by a Haitian artist that portrayed a funeral procession, which was more festive than funereal. But it was hardly a festive moment. I wanted to grab his hands in sympathy, but he wasn’t the touchy-feely sort. Once he made up his mind about something, he was all business. He left no room for sentiment.
Knowing that Stan was adamant about not leaving anything to his mother or sisters, I suggested that we try to fill a gap in the care of those infected with HIV by creating a unit somewhere for the terminally ill who had nowhere else to go in the final stages of their illness. Stan liked the idea and left me in charge of a sizable amount of money to make it a reality. Working with Horizon Hospice, one of the first hospice organizations in the United States, I initially hoped to establish a freestanding facility. But because of the high cost and uncertainty of such a venture, the board and I decided instead to find space at Chicago House, which housed homeless HIV-positive people, at the time mainly gay men. The unit was named after Stan, and for several years it provided compassionate end-of-life care in a homelike environment.
The last twenty-four hours of Stan’s life were agonizing. His family, Gavin, our dermatologist friend Ed, and I were all present for the deathwatch, sitting around the bed in the private room I’d arranged for him. Each time he appeared to stop breathing, we let out a collective gasp of relief. But then he’d breathe again. This type of breathing appears painful but it’s not, because by that time all higher cognitive functions have shut down; only the basic functions of life persist. Yet it is still awful to watch, even for me. Time expands into an eternity. As the clock crept toward midnight and then beyond, Stan’s breathing became shallower and less labored. Toward the end, his mouth opened and closed but almost no air entered or exited his body; this is known as the “O sign.” He finally died in the middle of the night, his tongue protruding slightly from the side of his motionless mouth—the “Q sign”—as our eyes burned with tears and exhaustion.
Pointlessly I went through the motions of examining him. I checked for a pulse, made sure his pupils didn’t react to light, and listened with my stethoscope for the faintest of heartbeats. I had to look like I was doing something important, but it was an illusion, a secular substitute for a sacred ritual once performed by a priest or other religious figure. Stan lay lifeless, glazed eyes staring vacantly into space, skin still moist from sweat, lips drawn apart, and teeth coated in dried saliva and other matter. I rearranged the covers, drawing them over his ashen arms and chest.
We all stood near the bed in stunned silence for a few minutes. I expressed condolences to Stan’s mother and sisters, my words sticking in my throat, and then hugged each of them. Ed looked at the floor and shook his head, clicking his tongue against the roof of his mouth in distress and disbelief. Gavin wiped tears on the back of a sleeve.
I didn’t cry—I usually don’t in such circumstances. It’s not that I didn’t feel sad; I felt terribly sad that Stan—my friend, my patient, and my mentor—was dead. But crying isn’t my go-to emotion when crying is the expected response, especially in public. It makes me feel like a cold person, but I’m not. I can cry. I cry during an emotionally charged movie or while reading a good novel with characters an author has magically made me care about—but only when I’m enshrouded in darkness or alone, unwitnessed. In the final moments of La Boheme, Rudolfo’s piercing note of despair at the realization that Mimi has died never fails to bring me to tears, no matter how many times I swear that I won’t get choked up. The clashing, atonal crush of horns—an orchestral evocation of a final exhalation—gives way to a haunting melody in a minor key as the tenor sobs out the name of his beloved. Those notes and her name burrow into my unconscious and dredge up what otherwise I can’t seem to summon to the surface at the appropriate moments in the real world.
Stan’s death was senseless, wrong, and unfair, just like all deaths at a premature age, whatever the cause. If I learned anything from that experience, it was that when you faced the reality of your own imminent death, you could go down kicking, screaming, and raging at the world or as stoically and quietly as Sydney Carton on his way to the guillotine in A Tale of Two Cities. It doesn’t matter. The end is the same.
: 8 :
The Predator and Prey Within (1991)
On Thanksgiving morning 1991 Gavin and I, flanked by armed scouts, trudged through the African bush with four others, all very hung over from too much wine. The moans of an unseen lion jarred us to attention and made us forget our pounding eyes and heads. For a moment I wondered who was the weakest of us in our group, the most likely to be attacked after the guards scrambled up a tree to save themselves. Crowding together, we tiptoed on the path, snapping the dried grass and slapping the muddy earth with our boots, a dead giveaway to the beast in the bush. But the lion didn’t give a shit about us, and we soon became aware of our bodies again, sweating in the searing heat, having foolishly forgotten to bring water. A fetid hippo pool dotted with menacing periscope eyes beckoned us. No one dared, of course.
In the evening Jeannie, a stout, jovial elderly British émigré who with her husband managed a camp on our ten-day tour of Botswana, prepared a kind of Thanksgiving feast for us. With no turkeys available, she roasted a duck and cooked a pie of squash and sugar. How odd and wonderful it was to celebrate Thanksgiving. I had so much to be thankful for—most importantly, just being alive. Only a week earlier I’d been in Chicago grappling with conflicting emotions of relief and remorse as I waited to board the plane. I was like a soldier longing for his furlough while feeling guilty for abandoning his comrades in the midst of a war. And it was a war by this time, against an enemy as invisible and implacable as that lurking lion. My comrades weren’t other doctors but my patients. For them this Thanksgiving wasn’t a day of thanks for life but one more waystation on an inexorable march toward their death.
On the morning of my departure for Africa, I had bolted out of bed at 6:00 a.m. as usual and rounded one last time on my patients on the AIDS unit. I could have ta
ken the entire day off, but I felt duty-bound. Their plights haunted me. I couldn’t shake them from my thoughts, no matter how excited I was about traveling to the Okavango Delta. Although I had full confidence in Tom and our new associate C., I felt responsible for my patients.
By 1991, 11 West at St. Joe’s had been in operation for three years. As the AIDS crisis escalated, our wards began to overflow with the sick and dying. Before 11 West, no HIV-positive patient at St. Joe’s was allowed to share a room with an HIV-negative one, although you can’t catch the typical infections afflicting a person with AIDS by sharing a room, except tuberculosis. (Non-AIDS patients often posed the greater health risk to AIDS patients’ suppressed immune systems.) You also can’t catch AIDS from a toilet seat or touching faucets and sinks. In that era, while you wouldn’t have heard a peep from patients if they shared a room with a serial killer, if they shared a room with an AIDS patient it would have been a public relations disaster for the hospital.
In the earliest days of the epidemic, the hospital staff feared people with AIDS as much as the general public did and fabricated any excuse not to treat them. One surgeon I worked with sent a patient with an inflamed pancreas to x-ray every day to get a picture of his abdomen because he was afraid to touch this patient’s body. A gastroenterologist begged me not to refer any more AIDS patients to him for a colonoscopy because he had two young children to raise and didn’t want to put himself at risk of infection. A thoracic surgeon, the chief of surgery at St. Joe’s, left me in a quandary one night when he refused to operate on a patient who suffered from purulent pericarditis, where pus fills and constricts the lining around the heart like a vise. If the pressure was not relieved, my patient would die. “Ask one of the younger guys,” the surgeon said before abruptly hanging up. With an anxious eye on the heart monitor, I ripped through the hospital directory in a frantic search for a surgeon who wouldn’t blow me off. I found one and to this day I remain indebted to him.
Ordinarily I don’t hold a grudge. But I couldn’t forgive those other physicians for abandoning me and my patients in the hours of our greatest need. For years I avoided them at staff meetings, refused to greet them in the hallway or doctors’ lounge, and never referred a patient to them again.
Because of so much antipathy toward AIDS patients, it made sense to create a safe haven for them. HIV-infected people required a dedicated and compassionate team of healthcare providers—doctors, nurses, nurse’s aides, and social workers—to manage a complex array of medical and psychosocial problems. In their final days, weeks, or months, they needed compassion, not rejection. St. Joe’s wasn’t the only hospital in the city with an AIDS unit, but we followed closely on the heels of Cook County and Illinois Masonic Hospitals.
Setting up the unit had taken months of hard work, including overcoming prejudice against gay men at St. Joe’s, which, paradoxically, because of its proximity to Boys’ Town, seemed to have a larger-than-usual number of gay and lesbian staff members—administrators, nurses, file clerks, technicians, doctors, and priests. In 1988 Tom and I lobbied the nuns to establish the unit, appealing to their commitment to the marginalized and underserved. After they agreed to the concept, we attended interminable round tables with administrators who, though well meaning, relished turning molehills into mountains. Each meeting ended without a decisive plan, pushing the opening date of the unit further into the future. Trained to make decisions based on experience, knowledge, and even instinct because a patient’s life often hangs in the balance, doctors are an impatient bunch, and I was no exception. After each of these futile meetings I wanted to scream. In my opinion, we could have accomplished in one meeting what hadn’t yet been accomplished in five.
While we waited, we courted patients and philanthropists from the gay community to donate money for renovating the rooms and creating a homey lounge with refrigerator, television, bookshelves, couches, and chairs. We set aside another room for hospice care, one large enough to accommodate lovers and families, who could spend the night comfortably on a convertible sofa bed or recliner. To our delight, we had no trouble raising money. Our patients and their families were remarkably generous. In gratitude, we made sure that plaques honoring them adorned the walls of 11 West.
In anticipation of final approval, we assembled a group of healthcare workers, mainly nurses, social workers, and nurses’ aides who already worked in the hospital, whose sole job would be to care for AIDS patients. And then one day 11 West opened, not to any fanfare but suddenly, as if by the flip of a switch. The CEO, who was tired of hearing us complain about the delays, made it happen. Patients were moved, personnel shifted; and—voilà!—a wing of the hospital became the AIDS unit. It wasn’t the wing we wanted—we preferred 11 North, with some rooms that had scenic views of Lake Michigan and Lincoln Park—but it would have been ridiculous to complain. We were grateful that we were given an entire wing, which could hold up to twenty patients at a time. When the remodeling was completed a few months later, 11 West, with its gleaming linoleum floors and tastefully decorated rooms, welcomed our AIDS patients with open arms. I felt proud. I was to spend the next fifteen years there, often heartbroken, occasionally inspired.
One of the patients I had rounded on before departing for Africa was David. Before this latest hospitalization I’d seen him so often in my office for various problems that he seemed more like a friend to me than a patient. He now called me Ross instead of Dr. Slotten, a sign of affection as well as respect. This would be the last time I’d see him alive. Pausing at the room’s threshold in my gray coat, I scanned the clipboard on which his vital signs were recorded. His blood pressure had dropped to dangerously low levels, and in compensation his heart beat at a very high rate. Nearly every organ was failing: his kidneys had shut down so he produced no urine; his heart pumped ineffectually, compounding his inability to shed fluid that accumulated in his lungs, belly, and legs; and his bone marrow had stopped producing blood cells, essential for carrying oxygen and fighting off infections.
With a sigh I entered David’s room, which was silent except for his labored breathing and the hissing of oxygen. In response to my questions about pain and comfort, he grunted a few unintelligible words that were muffled by the plastic oxygen mask pressed against his nose, cheeks, and mouth. I leaned over his bed in a fruitless effort to understand him. Staring at his wasted arms, torso, and sweaty body, I recalled when he was robust and vibrant and the prospect of dying seemed remote. Now the moment we had dreaded for months approached. Struggling under the mask to catch his breath, he’d turned an indescribable shade of gray, a color between the pink of life and the blue of death. I squeezed his hand with affection but didn’t receive the usual response. Letting the limp, cool, and swollen fingers slip from my grasp, I stroked the stubble of his beard with the back of my hand. “Goodbye, David,” I said softly and left the room.
There were so many others like David in my practice now, though none at the time so close to death. Those men would still be here when I returned from Africa, but they’d already begun their journey down a path whose tracks were vanishing like footprints in wave-washed sand. Such sadness, such unbearable sadness, I thought. I kept hearing Kurtz’s words from Joseph Conrad’s The Heart of Darkness: “The horror, the horror!” Although those words were uttered in a different context, they still resonated for me as I left David’s bedside and the ward. The horror, the horror! I imagined my hands pressed against my skull like that Edvard Munch portrait of a woman screaming on a bridge. Like her, I wanted to run away from a living hell.
By 1991 I’d lost hundreds of patients from AIDS, and the number increased with each year. June 5 had marked the unofficial anniversary of the epidemic, ten years since the Centers for Disease Control published its report. Since then 180,000 AIDS cases had been reported in the United States; there were more than ten million cases worldwide. The statistics boggled my mind. AIDS was now the second leading cause of death in American men between the ages of twenty-five and forty-four, after ac
cidents. It was the leading cause of death in my own practice.
By a coincidence I didn’t consciously seek, I was heading to a continent ravaged by AIDS. Botswana was among the countries hardest hit by the epidemic, but I tried not to think about that. I wasn’t going there to study the impact of AIDS, at least not this time. I followed an urge to explore the world while escaping my present. I hoped that the hiatus would reenergize me, because I felt enervated, exhausted by my work caring for the sick and dying.
Yet I was conflicted. How frivolous of me, I thought, to leave on a holiday, brimming with excitement, when these men had no hope of seeing the next year. It was the kind of guilt that sprang not from any religious conviction but from my mother, who would reprimand me as a child for wasting food when there were millions starving in India or as a senior in college for throwing away money on a grand tour of Europe when I could be investing in real estate instead. I was supposed to be a penitent, flagellating himself at every thought of pleasure.
Despite the Jewish guilt—a concept my mother didn’t believe in—I could continue practicing medicine only if I interrupted my working life at strategic intervals when my spirit flagged. A cliché like “Life is short” became a mantra of survival. Delaying gratification until some imaginary retirement date seemed absurd to me, when so many men my age were dying decades before their time. I didn’t want to look back on my life with regret, cursing myself for putting off the dreams I could have pursued in my prime. Although I was HIV-negative, I behaved like someone who walked through the valley of the shadow of death, not fearless but fearful that the end was near, that the moments of good health were precious and shouldn’t be wasted.
Plague Years Page 12
