Fortunately the nurses, residents, and other ICU personnel were too busy caring for other patients to eavesdrop on our conversation. When I realized that I’d preserved my privacy and dignity, I ceased blushing and my bristling scalp relaxed. I felt guilty for not being able to reciprocate Art’s feelings. A poor actor, I couldn’t even dissemble.
“I care for you,” I said in a voice that sounded cold and flat.
“Please be my friend,” he pleaded. “You’ll always be my friend, won’t you?”
“Yes, yes, of course,” I said.
I extricated myself from his grasp and examined him briefly, retreating into my physician shell, a far more comfortable space at that moment.
“How much longer do I have?” he asked again. “Weeks, days, months?”
Again I evaded the question. I told him not to think about that now and to rest. I patted him on the shoulder and left. Max had appeared at the threshold. Before closing the door, I turned around and saw Art wave to him. His expression was cheerful again, the feelings of anguish having vanished. I wondered if he realized that he was not at home. I also wondered if the words he’d spoken to me had any meaning in the context of an impaired memory.
Had I behaved more clinically and not been so self-absorbed, I would have performed a mental status examination, which tests a person’s orientation to time and place, his memory, his ability to concentrate, and his judgment. I could have assessed the degree of Art’s cognitive impairment and proved that he did or didn’t suffer from dementia. But such an interrogation seemed pointless. His answers didn’t matter and wouldn’t have altered the outcome.
I wrote a short note and told the nurses that I would clarify his code status. When Max emerged from the room I took him into an empty conference room. We sat side by side. I was the doctor, he the patient’s beloved; yet I could easily have been in his situation, in the same hospital, in the same conference room, but with Tom as the doctor, because there was no other doctor who cared for AIDS patients at St. Joe’s in 1985. A montage of awkward and painful images briefly passed through my mind—I could imagine the nurses and secretaries snickering behind my back, their eyes and mouths twitching with scorn. It seemed impossible to me to have expected sympathy or shared grief. With a firm blink, I squashed these thoughts.
“I think you realize that Art’s situation is hopeless,” I said.
“Yes, I know.”
“He stopped breathing yesterday and was brought back to life, but he’s not quite the same person. His intellect is unchanged, he seems like Art, but there’s been a significant change in his memory. As you can see, he’s actually blissful and in no emotional pain. He forgets as soon as you’ve stopped talking to him.”
Despondent, Max stared at his feet. I wanted to put a comforting arm around his shoulder but hesitated. I looked around the room instead. It smelled of cigarettes. On a nearby table beside the ashtray filled with butts were open charts and loose paper notes. Someone had forgotten to remove an x-ray from the view box on the wall, but the image was difficult to make out because the light had been turned off. Through the window of the door I watched people move about soundlessly, as if in a silent movie.
“I’m so sorry to bring this up, but one of the problems we’re having is that Art’s code status is unclear,” I said. “The nurses and doctors need to know how far to go. Do we put him on a machine to help him breathe if he stops breathing, or restart his heart if it stops again, or do we let him go? Right now things are halfway and we can’t deal with life and death halfway.”
“I don’t know what to do,” Max said tearfully. “Maybe I’m being selfish, but I think we should let him die. But he told me today that he wants to live, that he wants everything done. What do you think we should do?”
“It’s really not my place to make that decision, Max,” I said. “Unfortunately, it’s up to you as his power of attorney.”
He shook his head with indecision and started to cry. “I don’t know, I don’t know,” he said.
“Maybe it’s best if we make him full code,” I finally said. “Art changed his mind and we should respect his wishes. If he weren’t conscious, it might be different. But he’s awake and still full of life. We’ll do everything in our power to keep him alive.”
“OK,” he said.
“Why don’t you stay here until you’re ready to see him again. I need to speak to the nurses,” I said as I squeezed one of his hands.
The charge nurse and the nurse taking care of Art that day anxiously asked me what to do if Art arrested. They were standing behind a curved desk that resembled the helm of a ship, from which all the rooms in the unit could be surveyed. A secretary listened closely to our conversation, reserving judgment at least until I was no longer present. I had a direct view of the door out of the ICU and desperately wanted to make a dash for it. Instead I told them that Art was a full code. If his blood pressure fell to dangerously low levels, give him medication to raise it to safe levels; if he stopped breathing, intubate him and put him on a ventilator; and if his heart stopped, shock him and give him whatever it took to get it going again. These were Art’s new wishes, and Max wasn’t prepared to go against them. If we didn’t do everything we could potentially be sued, I said, even though Art would eventually die no matter what we did. The nurses reluctantly agreed that this was the best course.
As I was about to exit the ICU, I noticed a girl with blond hair standing alone at the back of the unit. At first I didn’t recognize her, but then I realized that she was Art’s oldest daughter, Karen. More than two years had passed since I’d last seen her. Now fourteen years old, she was blossoming into an attractive young woman. Waving tentatively, she gazed at me in helplessness. I had no idea how much she knew about her father’s illness, and just the thought of explaining it to her in a manner that an adolescent could understand exhausted me. I gave her a hug, not from familiarity but in consolation. She told me that her sister and mother were parking the car and would arrive any minute. I made excuses to leave. I didn’t want to confront Art’s ex-wife.
Although I’d never met Alice, I’d caught glimpses of her through the windshield when Art and I would drive to the suburbs on weekends to pick up his daughters. As we motored up Alice would barely look at me, her pain evident from her avoidance of eye contact. It had been awkward for me too. I didn’t end their marriage, but at that time I was her successor, a realization I deflected by looking the other way as if I were a mere passenger, not a lover. And now, as Art’s life was ending, all sorts of uncomfortable and unwelcome feelings had returned. I was in no secure emotional state to deal with them.
I had no idea what Alice thought of me, or even if she would recognize me, and I didn’t want to find out now. Oddly, as an ex I was in the same position as she, but that was something neither of us might have been able to acknowledge or discuss. I felt sorry for Art’s daughters, who soon wouldn’t have a father. Whatever Art’s deficiencies as a friend, husband, or lover, he was a conscientious, loving parent who never missed a child support payment and remained devoted to Karen and Molly long after his divorce. I left them behind with relief.
: 5 :
The Period at the End of the Sentence (1985)
Despite the unique personal and professional challenges Art’s illness posed for me, Gavin and I didn’t cancel our July Fourth party at our apartment. There were eight of us, including Tom. All but one of the guests were doctors. They arrived one by one. Ron, an internist at Cook County Hospital, arrived first, followed by Stan, who’d given up medicine to open a flower shop; Alex, an investment banker Gavin and I’d met on a trip to Key West; Ed, a dermatologist; and Bob, a third-year family medicine resident at St. Joe’s, like Gavin. Bob fawned over Ed’s leather boots and made everyone laugh when he dropped down on all fours onto the cold ceramic floor of the foyer and pretended to lick them. Leather drove him mad with desire, he proclaimed with sincerity.
We retreated to the overstuffed couches in the living room, t
alking over one another and laughing. From that vantage point we had a view of the surrounding units in the apartment complex, whose weathered brickwork reminded me of the architecture of San Gimignano, an enchanting, well-preserved medieval hill town a short bus ride from Florence.
Taking Tom aside, I whispered what had happened at the hospital. Expressing remorse, he said that he’d totally forgotten our agreement about Art. I wasn’t sure I believed him. At first I said nothing to the others and tried to forget the traumatic events. Gavin served drinks and appetizers, and all was merry until the phone rang.
Everyone stopped talking. I faced a bookshelf, speaking softly into the receiver as if to the books, my back to our guests. It was a nurse from the ICU who informed me that Art had died. At that moment my mind went blank. I thanked her, asked no more questions, and hung up. Although I wasn’t surprised, I hadn’t expected his death to come so soon.
From my expression Tom guessed the meaning of the call, which forced me to talk about my experiences. My brief synopsis of Art’s illness elicited murmurs of sadness from the group, especially when I let them know that he’d once been my lover. Gavin and I embraced, more from relief that the ordeal was over than from sorrow.
A few minutes later the phone rang again. The nurse apologized: Art was still alive! The doctors conducting the code had successfully resuscitated him, she said. Several of the guests gasped, and a pall descended on the festivities. We managed to carry on, but it was hard to enjoy ourselves. For the rest of the evening we were all Art, obsessed about our health. Such obsessions weren’t unfounded. Within a decade, three of the seven of us would die of AIDS. The eighth, Alex, was so perturbed that we never heard from him again.
After our guests left, I received another call from the ICU. Art had coded again, and after twenty minutes the residents were unable to generate a heartbeat. Looking to me for guidance, they waited for a signal to stop.
“Enough’s enough,” I said. “Let him go.”
I had no further contact with Max or with Art’s family, didn’t attend the funeral or memorial service in a distant suburb, and had no idea where he was buried. Had Art not reentered my life through his illness, I would have barely given him much thought. From an emotional standpoint I’d buried him long ago. Now I worried about what unwanted legacy he may have bequeathed to me, and what I might have bequeathed to Gavin.
I spent the next several months in various states of anxiety. Had I been infected, or had I managed somehow to avoid HIV? Art’s death and its ramifications were too painful to confront head on. During the day, when hospital rounds and office visits distracted me, I could forget; at night I was haunted by the specter of my mortality. I constantly checked myself for signs of a deteriorating immune system—I looked into my throat for thrush, inspected my skin for the purplish lumps or bruises of KS. Sometimes I had night sweats, but that was a sign of stress, not disease, because I never had a fever, felt ill, or lost weight.
In the fall Gavin and I went to New York to see Larry Kramer’s incendiary play The Normal Heart, a diatribe against a world that had failed to grasp the urgency of the AIDS epidemic before it spiraled out of control. As we sat waiting for the drama to begin, we scanned the whitewashed walls on which the names of the dead were emblazoned, a list that lengthened each day as the death toll skyrocketed. I didn’t want my name up there. I didn’t want to die of AIDS.
When the theater blackened at the end, it was impossible not to share Kramer’s rage, which I directed at Art, at President Reagan, who’d barely uttered a word about AIDS, and at myself. Kramer called people to action, blaming all of us for making “a million excuses” not to get involved. I wasn’t a firebrand; I couldn’t be an activist marching in the streets, smashing windows, overturning cars, or brandishing placards. I was a doctor, and if I survived that would be my mission, my contribution to the cause: to be an AIDS doctor. I already was, but the epidemic in Chicago was in its early stages, not yet on par with New York and San Francisco, and I’d seen only a few dozen cases. I still viewed myself as a family doc, not a true specialist.
Before I could throw myself wholeheartedly into the fray, I had to know if I carried the AIDS virus. Unable to order an HTLV-III/LAV antibody test through the laboratory with which we contracted because the test was not yet commercially available, I contacted the Red Cross in early October to see if I could send samples from my office for screening. The medical director agreed. The first sample I sent was from a patient who, like me, wanted to know if he’d been exposed to the virus and had no signs or symptoms of infection. I was the second person tested.
The medical director told me that it could take up to two weeks to get a result. That seemed like an agonizingly long time to wait. Each day I checked the mail for a letter from the Red Cross and felt dejected each time I heard nothing. After a week I was almost paralyzed with fear. Imagining the worst, I assumed that it took longer to report a positive test than a negative one, because a positive result had to be confirmed with a more complex screen called a Western Blot. In anticipation, numerous scenarios passed through my mind: the reaction of Gavin, my parents, and the people I worked with at St. Joe’s—all melodramatic fantasies and none based on fact. It was as if I had made myself Saint Sebastian, the martyr tied to a tree and riddled with arrows, or a religious outcast stoned to death for his transgressions. It was I who shot the arrows or cast the stones, not my imaginary assailants.
When the letter finally came ten days later, I let it sit on my desk for several minutes before tearing it open. My hands trembled as I extracted the two pages, the first with my patient’s results and the second with mine. I broke into a cold sweat, and my moist fingers stuck to the envelope. They were ordinary pieces of paper, as if typed by a secretary. They hardly looked like the results I received from our laboratory, printed out by computer on striped pages and torn from a printer. It was hard to focus at first because I wasn’t used to the format.
My patient’s test was positive. Mine was . . . negative. For a moment I forgot about my patient as an immense wave of relief passed over me, ending months of anguish. Had I tested positive, I would have been shattered. It would have been a life- and career-altering event. I don’t know if I would have found the strength to continue caring for my patients, especially my AIDS patients, knowing that we shared a common destiny, like inmates in a concentration camp watching their comrades perish in the gas chambers or hostages being hauled off one by one by their hooded captors. Not only had I been spared, but Gavin had also been spared. Had I been a man of faith, I would have thanked God for my good fortune. Instead I felt incredibly lucky. I showed the results to Tom, who hugged me with elation.
And then I realized that I had to confront my patient with terrible news. I wasn’t in the frame of mind to deal with that nightmare at that moment, but I couldn’t delay for long because I knew he was as anxious as I. Once I settled down, I called him.
From my earliest days as a physician, I’ve thought it best to be gently blunt when delivering bad news. Bad news is bad news, whether given in person or on the telephone, with no rules about how best to deliver it. If there’s voicemail (or answering machine, in the 1980s) I refuse to leave ambiguous, potentially alarming messages (“this is Dr. Slotten; please call me when you have a chance”). Either I hang up and try again later or I report the results truthfully. After the revelation I offer to see the patient as soon as possible, ideally that same day so that we can talk frankly about a treatment plan—in the early days of the AIDS crisis, there often wasn’t one—the prognosis, and the likely course of the disease. The conversation is at times a vain attempt to impose a structure on a process that doesn’t have one and can quickly spin out of control. Despite thousands of such conversations over the decades, I’ve never ceased to dread delivering news that will forever change a person’s life. Before picking up the telephone or entering the examination room, I’ve already imagined a scenario about the conversation based on what I think I know about the pat
ient’s character.
In this case, I didn’t record my patient’s reaction in my journal, and I don’t remember anything about what must have been an excruciating conversation. I have a vague image of a tall, attractive man of about thirty sitting quietly in the examination room as I groped for words that treaded the fine line between hope and despair. Perhaps I held his hand after giving him the news, as I do now. He must have taken the news in stride, since he made no lasting impression on me. I couldn’t predict his future. In 1985 we still didn’t know that HIV was an automatic death sentence.
For some reason I looked at the results of the two tests again a few days later, just as one might check a lottery ticket to confirm that he’d indeed won the jackpot. To my horror, I noticed that my patient and I had been assigned the same confidential code. The birth dates and other demographic information on the forms were correct, but that sliver of doubt sent me into a panic. The director of the Red Cross couldn’t completely satisfy me that there hadn’t been a mix-up. I sent off a second sample, but since Gavin and I were about to take a three-week trip to Australia, New Zealand, and Tahiti, I would have to wait until I returned to the States to get the result. I told myself that the error was clerical and nothing to worry about.
In Australia we stayed a couple of nights in St. Kilda, the Boys’ Town of Melbourne, a lively although rundown residential area on the beach, before heading by car to Sydney. Along the way we saw fairy penguins, koalas, and the occasional kangaroo and passed through Bible-thumping towns that reminded me of parts of the American South that I’d glimpsed on a whirlwind road trip when interviewing for medical schools in the fall of 1976. In Sydney we cruised around the scenic harbor; poked our heads inside the famous opera house, though it was the off-season; sunned ourselves on Bondi Beach; and spent two evenings on Oxford Street strolling in and out of gay bars, where the clientele differed little in dress and hairstyle from their counterparts in the US. We sat in a corner sipping beers as we listened to the same thumping disco music as in Chicago, not mingling with the crowd but enjoying the view.
Plague Years Page 8
