Was something like this happening to me? Was my egalitarianism nothing but a cover-up for a deeply rooted prejudice? Was my outward proletarianism, my disdain for what I saw as the avarice of modern medicine, my compassion for gay men and for the underdog in general, merely a posture? If so, this posture was costly: It was responsible for the increasing sense of isolation I felt from my community, even from my own wife. By taking up the cause of AIDS, I had become tainted, the associations of this word had tarnished me, I often felt as “guilty” as the kind of people I cared for. Perhaps this was why I was so drawn to the Johnsons, the “innocents”: they were an affirmation of my self-worth, of my innocence.
A hundred yards from the house, the skies opened up. I was soaked. Once inside, I stripped off my wet clothes. The ink in my pocket diary was smudging in places. I peeked into Steven’s room, studied his face in sleep and wondered if he was dreaming of fireflies. And in our bedroom, baby Jacob lay next to his mother, both having fallen asleep after a breast-feed, milk still on his lips and hanging off his chin.
Rajani awoke. She came out of the bed and offered to fix me something to eat. I put on my pajamas and joined her in the kitchen. We sat across from each other and I told her the story of the Johnsons. It was a gripping story, one she could obviously relate to. A husband infected “innocently” who then infects his wife. I was describing our very own nightmare. But she had little to say. I had been taught professional detachment; she, like many doctors’ spouses, had mastered it.
“You know,” Rajani began, “Mrs. D________ spoke to me the other day.” (This was the wife of a doctor friend of ours, a pulmonary physician.) “She says that every time her husband gets a consult with your name on it, he dreads it because he might have to do a bronchoscopy on an AIDS patient.”
“Really? But it doesn’t stop him from doing it. He comes right away and does a beautiful job,” I said.
“Still, he is scared,” Rajani said.
“We are all scared. But we have to do it.”
“I wish this disease was gone, that you were not so close to it. It’s kind of become who you are and what you do.”
“I wish it was gone too.”
“But it’s not going to,” she said. “Is it?”
16
BY THE NEXT MORNING Will Johnson felt no better. A mouthful of water caused the abrupt onset of searing, lingering pain behind his breastbone. He had a temperature of 102 degrees Fahrenheit and had received one dose of amphotericin and three doses of acyclovir: the former for Candida and the latter for herpes.
The gastroenterologist, one of several in town, was a very competent individual, an excellent diagnostician. But even as I discussed the case over the phone with her, I could tell she did not relish this consultation. Nevertheless, she went down Will’s esophagus with her endoscope and saw several discrete ulcers at the lower end. They did not appear characteristic of either herpes or Candida, nor of cytomegalovirus (CMV), another cause of esophageal ulceration. She took biopsies.
That evening when I went to see the Johnsons, I asked Will how the day had gone.
“It was very strange, Abraham. The procedure was all right. But I could tell the doctor was uncomfortable. On the one hand, she felt sorry for me, felt inclined to be nice to me. On the other hand, she seemed kind of grumpy with me, a little short, as if at one level this AIDS was my fault, my doing, even though she knows the facts. I could see her emotions going back and forth, back and forth. I must say, I haven’t experienced anything like that from the nurses or anyone else in this hospital thus far.”
After the procedure, the gastroenterologist did not come by to see the Johnsons again. I called her on the phone to let her know how Will was doing, to discuss Will’s continuing symptoms. She made recommendations, but she never came by, a fact that was not lost on the Johnsons. The gastroenterologist was knowledgeable about the latest reports on esophageal disease in AIDS, her advice was helpful. But whatever assistance she gave to the Johnsons and to me was negated by her failure to visit again. From then on I tried to direct most of my consultations to other gastroenterologists in town. They seemed to have no qualms about dealing with HIV-infected persons and they provided excellent care.
The biopsies of the ulcers in the esophagus were not revealing. In later years there would emerge a body of knowledge about these mysterious ulcers: they are aphthous ulcers—canker sores—except that they are much bigger and much more severe than the usual canker sores seen in the mouth. Some of them respond to steroids. But at the time when I was taking care of Will, such knowledge did not exist. I treated Will Johnson with antacids and with viscous Xylocaine, a local anesthetic to ease the pain. I decided to continue the antifungal and antiherpetic medications for a full ten-day course.
THAT AFTERNOON I went over to the University Clinic at lunchtime to meet B.J. Hilton’s father and to check my mail.
B.J. worked as a manager at a well-known restaurant near the mall. He was, according to Carol, the handsomest man the front-office staff at our clinic had ever seen. She told me that at his first visit, they were all swooning over him. He wore his blond hair in a ponytail; he had the long limbs and muscular physique of a ballet dancer. Had you seen him on the street, you might have wondered if God was fair in blessing one person with all these attributes. He came to me when he found out he was HIV positive. He was asymptomatic with a CD4 count near a thousand.
B.J. told me on his first visit that there was no possible way he could tell anyone but his mother about his infection. His father and his brothers would never understand.
Imagine my surprise, then, when his father called and asked to see me. I telephoned B.J. at once at the restaurant where he worked. He said he had just had a wonderful heart-to-heart with his father and that I should feel free to talk to him.
B.J.’s father was a large balding man who showed up in a safari shirt and slacks. If B.J. possessed a ballet dancer’s body, his father was more in the linebacker mode, a linebacker who had gone to fat. He told me how sad he was at the news that his son had HIV. And yet, he was glad that his son had come out and told him. He said, “For the first time in ten years, I hugged my son and told him how much I loved him. I would not want him to get sick without knowing that.” He reached for a handkerchief and dabbed the corners of his eyes.
I told him as much about HIV infection as I thought he could digest; I told him what B.J. could expect in years to come. He seemed reluctant to leave. I asked him if this was the first he knew his son was gay.
“No, I suppose I’ve known for some time now. One time he got in trouble with the law. I had to go bail him out. It had to do with something in the bathroom at J.C. Penney.” At this point his face hardened and he looked at me and said, “All I can tell you is it was something disgusting. Just plain disgusting.”
I could imagine what it might have been and how painful it was for the father to picture it.
“Plain disgusting. I mean, I more or less knew then but I just turned away from him. Well, even before that, growing up, he was always . . . different. And maybe I was hard on him, tried to get him to do the things his brothers were doing, but it never worked. He had his own friends, his own interests—still does.”
He stared away now and was silent before he looked back at me, the tears pouring down his cheeks, the hankie quite ineffective. “Isn’t it a shame for it to take a disease like this for me to be close to my boy again? The little baby boy that I carried and loved—he was the youngest—somehow got away from me. Now we’re back loving again, but he’s going to die, isn’t he? That’s the bottom line, isn’t it?”
I hedged. But yes, it was the bottom line. Every study at that time, during the seventh year of the epidemic, suggested that most infected patients gradually declined.
Mr. Hilton finally left my office. I found myself thinking about him and B.J. all day, trying to picture them both twenty years ago. I could identify with B.J. and his father, identify with them as a son and as the father of two
little boys. I knew exactly what Mr. Hilton meant when he talked about the little baby boy that he carried in his arms who had grown up and gotten away from him. It was happening to me: Even as I cradled Jacob in my arms, Steven, who it seemed only yesterday had been an infant, was now a little boy, exploring the world around our house. My time with my sons was filled with this sense of urgency—that I could not waste a moment and that it was crucial to record it all on film, in case the memory failed. It was difficult to picture my little cherubs one day reaching their teens, one day developing the secondary sexual characteristics that presaged their becoming men: the voice breaking, the appearance of pubic hair, the phallus enlarging. I remembered a moment in my childhood, when I was about eleven: I was secretly reading Lolita in my room—I was a voracious reader. Suddenly, over the edge of the book, I became aware of a foot: it was an adult foot, a large foot with well-formed nails. The big toe was dominant and had character, the other toes looked like they knew what they were doing. There was a deep plantar arch and the tendons on the forefoot stood out like cables under the skin. It dawned on me that this was my foot. Though I was going through other shocking and exciting changes—helped in no small measure by the book I was reading—it was the sight of that foot that let me know, as surely as anything before or since, that manhood had arrived. It was for this reason that Jacob’s baby feet were the part of his body I adored the most: those rocker-bottom-shaped plantar pads and the way the toes looked like little buds were the essence of what made him a baby. Already Steven’s feet had formed an arch and his toes had begun to resemble his mother’s.
I took a deep breath and dictated a note in B.J.’s chart recording this visit, documenting that B. J. had given me permission to chat freely with his father.
I checked my mail: a sweet card from Mrs. T, signed with only her initials, and with Personal marked on the envelope. Thank you so much for the way you dealt with my situation. Both the lice and the louse are gone.
HABIT BEING SO strong with me, I peered into the envelope and even shook it out over the sink.
EVER SINCE their arrival two nights before, Bess Johnson had spent all her time in the hospital with her husband. His swallowing and his pain were maybe better, certainly no worse. We waited for the pathology department to be done with the more exotic stains and cultures we had ordered on the biopsies, though I knew they were going to be un revealing. Meanwhile, I put a venous catheter under Will’s collarbone, into his subclavian vein and on into the superior vena cava. Through this we were feeding him hyperalimentation fluid; the bottle looked as if it held milkshake. It contained all his nutritional requirements in a readily assimilable form. We were bypassing his gut and trying to put some weight back on him. I had talked to the Johnsons about the need for me to examine Bess and establish what, if anything, the virus was doing in her body. She protested, but Will and I insisted, and I made an appointment for her in my Wednesday afternoon clinic.
I had one patient scheduled before Mrs. Johnson. This was the first male patient for whom Carol suggested I needed a chaperon. “Absurd!” I said, until I marched in and saw who it was.
It was none other than Raleigh, the young man who had been at the Connection when Olivia and I screened the video. He had sat next to Trevor, a black male of about the same age, and the two of them had carried on like schoolgirls. My eyes went to Raleigh’s wrist, looking for the vivid purple scar that I had seen there. But the shirt he wore today had ruffled Victorian cuffs that hid his wrists. When, after our appearance at the Connection, a cluster of men had come to my office for testing, Raleigh had been conspicuous by his absence.
“Remember me?” he asked, giving me an impish smile.
“I certainly do,” I said, shaking his hand.
“I was already HIV-positive when you came to the Connection. But I didn’t want to say anything.”
In the setting of the exam room, in the absence of Trevor, Raleigh was a little subdued, a little more serious. But it still appeared to be an effort for him. If he could not be the clown—I think Carol’s presence had something to do with that—he settled for a parody of a southern belle. He was missing only a parasol and a bonnet. If he wanted to pass through the world and our clinic unobtrusively, not draw attention and persecution, he was not dressed for the part. In the fluorescent light of the clinic, he appeared thirteen, not twenty-one as the chart stated. Since I last saw him, he had shaved the sides of his scalp, giving him the appearance of a plucked chicken. The hair on the crown of his head was cut close and dyed blond. He wore clear nail polish, a musky perfume, a silver brooch on his collar and tight jeans that appeared to have shrunk onto him and fused with his pelvis. He carried an alligator-skin clutch bag with a side pocket from which his cigarette case and lighter protruded. He had covered his acne with a thick layer of foundation that gave his face the look of a minstrel.
During the course of our interview, Raleigh adopted several different demeanors, as if he was trying each one out for size: For a while he was seductive and determined to titter his way through his visit; then suddenly he would regress to the child, tempting the motherly instincts in Carol.
“See, I was abused as a child,” was the sentence Raleigh began with. It was as if he felt his affect and his sexual preference needed some explanation. I didn’t doubt that Raleigh could have been abused as a child. But from what other patients told me, often they were the ones who as children had sought out sex with adults. Yes, it was abuse, because of their age; and the role of the adult was unforgivable. But very often there was no coercion, no threats. They had slipped into a precocious ritual that did generate guilt but gave them lots of pleasure.
Raleigh continued, “I smoked cigarettes and pot from the age of eight; my parents thought it was cute to get me high. I used uppers and downers from the age of ten and I have been an alcoholic since I was twelve.” There was a practiced quality to this recitation of his. Carol was shocked, on the verge of tears. For some reason, I resisted his tale. I was not willing to be sympathetic because I felt he was trying to draw sympathy out of me.
I asked about his sexual history. “Men were having sex with me from the time I could first remember being on earth.” The self-pity had slipped out of his voice and a note of pride had crept in. He was about to give us numbers but then—perhaps because of Carol—thought the better of it. “I grew to like sex with men. I grew to not like myself for having sex with men, but I liked the sex all right. I got into trouble a lot when I was young because I didn’t know how to stop.”
The story he told us was of myriad sexual encounters with men, many of which had the same reckless and abusive quality as his drug use. It was clear that he posed a risk of exposure and embarrassment to these men; his dress and manner were not conducive to a long-term clandestine relationship. One such episode with a married man had resulted in the wife calling the police, the married man going to jail and Raleigh being sent to a residential psychiatric facility. It was the first of many hospital admissions for maladjustment, for drug abuse, for depression. Twice he had slashed his wrists. He had run away to Atlanta numerous times—the city had a mysterious hold on him—but had never been able to sustain himself there. “I tried to work as a hustler outside one of the gay porn movie theaters in Atlanta. I figured, if men wanted to do it with me, I might as well get paid for it. And I wanted so much to stay on in Atlanta.”
“So what happened?”
“Believe it or not, I had a hard time!”
“Why?”
“Well, the typical hustler is more macho, I guess. And I am what I am,” Raleigh said, extending his arms and thrusting his chest out, as though displaying his couture. “And what the men who pick up hustlers are looking for is someone who looks straight. And I just couldn’t make it. I would get picked up in bars and get thrown out the next morning like garbage. I wanted a long-term relationship, but I could never get it.”
I asked Raleigh about the suicide attempts.
“Well, the first time I did
it to spite the man I was with. I wasn’t serious. And the next time was after I had visited the Connection. I was having the time of my life, everyone was talking to me, joshing with me. And then as the bar was closing, I was alone. I was pretty drunk, but I heard this one guy say behind my back, ‘What a queen! I wonder what he dresses up like during the day.’ ” Here Raleigh again made his I-am-what-I-am gesture. “He was talking about me as if I wasn’t a real person, as if this was not me. I just lost it, I went home and tried to end it.”
Raleigh now lived in a tenuous relationship with his grandmother; his mother had rejected him well before the HIV problem arose. His father had disappeared.
My exam (with Carol in attendance) was largely unremarkable. When he took off his shirt and pants, I was amazed at how narrow his shoulders and hips were. As if his growth had been stunted in childhood. His CD4 count (which had been done before he came to see me) was over 400.
I recited my litany of dos and don’ts for Raleigh, but he had by now let go of his serious side and had climbed back into his shell and put the mask of the jester back on. He had briefly let us in, but now he slammed the door. I could imagine that a psychologist working with him would be constantly struggling to get him to be serious. Raleigh let a giggle burst forth when I mentioned easing up on smoking. The serious expression on my face and on Carol’s only made us seem more comical to him.
“Well, Raleigh, in that case try to ease up on the smoking, try to ease up on the drinking. You are doing really well from the point of view of HIV infection.”
Raleigh smiled sweetly at me, but said nothing.
“Come back and see me in the office in four months and I’ll check you over again. . . .”
To what end? Clearly not to do anything as much as to confirm that nothing was a-doing in him. This impotence with AIDS was getting to me.
On to the next room.