My Own Country

  Despite the smell of the roast beef, I detected with alarm the faint and familiar scent of AIDS that I had smelled in Cameron Tolliver’s room, a smell that I will always be able to identify, a smell that still fills me with dread.

  Norman told me in a flat voice that he had had his bronchoscopy an hour ago. He had been kept “NPO”—nothing by mouth—in preparation for the bronchoscopy. Now he was asked to wait another hour until the anesthetic in the back of his throat wore off so that food would not go into his lungs when he tried to swallow. He was not hungry anyway, he said.

  I asked him how the bronchoscopy had gone and he said, “All right, I guess.”

  Claire, his wife, sat next to his bed. I found myself studying her whenever I could, curious about this woman who knowingly married a man infected with HIV, a man who likely would die of his infection well short of the ten years he had promised her. I had never been able to engage her in conversation or draw her out. She had many opportunities to step out of the room and to quiz me about Norman’s condition, but she had never done so, content, it seemed, to get all her information from Norman. For all I knew, even now she was counting on eight more years.

  “You sounded really down on the phone this morning,” I said. “I thought I would come and see you before I went home.”

  Norman looked at me and nodded. “Thanks for coming. Last night, after you left . . . was the lowest point,” he said.

  “You know you are entitled to be a little down,” I said. “It would be superhuman to always—”

  “—I want to be remembered for having had dignity. For courage. Sometimes it is so tough . . .”

  “You will be remembered for those things—”

  “No, you don’t understand. All my life, that’s all I’ve had, that’s the currency I built up: courage and dignity with this difficult disease—diseases. That’s what made me different. Other kids had blazing speed, or the height for basketball, or looks, or wealth or . . . But what I had was these mental qualities—useless to other people but critical to me. It was my thing.”

  Here he trailed off and I was about to say something when he continued: “And last night, for the first time since I was a little boy, I wondered whether I could keep it up, whether this disease would make me lose it all?”

  I could not hold Norman’s gaze. He was looking at me as if I was supposed to reply. As if, despite all his experience with medical people, for once he expected a pearl of wisdom to come from my mouth, something more than a platitude, something that would tangibly ease his mental anguish. I was distressed by what he had said. I had drawn strength from his courage and his dignity, had counted on them. Now it was almost as if he was asking me to lead the dance, and I feared I did not know how.

  I spied an envelope tucked under the telephone on the night table. He had written on the back of it: three telephone numbers, all with a strange area code. Above the three numbers it was written: “Dad, California.”

  He saw me look at the phone numbers. “Every time I speak to my father I wonder, will this be the last time I speak to him? Is there something I must say now or will there be another chance? For so many years he and I have talked matter-of-factly, as if hemophilia or AIDS is just one of those things that we had to negotiate—all of us. But now I find I want to hear something different from him. I want to say something different to him, like ‘Daddy, take care of me, don’t let this happen to me. I’m just a little boy and I want you to take care of me . . .’ something I never really said when I was a little boy.”

  I found these words heart-wrenching. I looked to Claire: her face was expressionless and she was looking at the floor.

  I felt so out of place and awkward hovering beside Norman’s bed, standing tall next to him, occupying this spot reserved for the doctor. If I could have sat down I would have, just as I used to sit on Will Johnson’s bed. But Norman might have been uncomfortable with that. Claire was in the only chair on the other side of the bed. As a reflex, I reached for my stethoscope. I pushed the stethoscope back in my pocket, remembering that was not what I was here for.

  I think Norman felt for my awkwardness. His glance expressed pity for me, sympathy for my wretched state, benign as it was.

  There was nothing more to say.

  I reached out to shake his hand to say goodbye.

  As my hand touched his, I found myself sliding my palm around so that our hands were in a “soul shake,” our thumbs hooked together. I covered both our clasped hands now with my left hand. I wasn’t sure why I did this, except I wanted to convey to him how much I felt for his situation, how much he moved me, how I could not fathom how one man could bear all this suffering, how I kept thinking he was me and I him. And it was tearing me up even if he still had some strength.

  My handshake took him a little by surprise and he looked carefully at my face again and said, “Thank you, Abraham.”

  Tears rushed into my eyes and I had to turn away. But not before he noticed. I could not control myself. I left saying goodbye over my shoulder, not even looking at Claire, because the tears were welling out onto my cheeks now.

  When I opened the door, there was Felix, my partner, his back to me, studying the chart. He looked over his shoulder and was startled to see me. He was about to say something but caught sight of my eyes. I could not offer a word. I patted Fil’s back and slid past him. I walked down the hall hoping that nobody would see me, swiping ineffectually at my eyes.

  In my car I felt ashamed for crying. What kind of message did it convey when you broke down in front of your patient? Certainly not a message of hope. I prayed he did not misinterpret my crying as a sign that the end was very near. The end could be still very far away. But not eight years away.

  On my way back to the VA I kept thinking about Norman’s two “things”: dignity and courage. The only two gifts he ever had, the two things he could control, the two things that he wanted most to be remembered by.

  I decided not to go home. I parked near the gazebo, waited for my emotions to settle down.

  I needed time before putting my armor back on again, resuming the role of husband, father and family man. I could not bring these feelings home.

  Later, when I entered the house, I wondered if my clothes smelled of AIDS. Was this the scent my sons associated with their father? I showered quickly but I could not put the day behind me. All evening I paced, restless, filled with a nameless anxiety. In bed, I pretended to sleep, but could not. I stayed very still, but I knew that something coming from me, some visceral emanation—fear, terror—was keeping Rajani awake too. I felt her there, waiting, silent in the dark.

  22

  “IF YOU HAD TOLD me a year ago that my two best friends in this world would be Bobby Keller and Jacko, I would have told you you didn’t know B from bull’s foot.”

  We were sitting on the cinder-block steps outside Vickie’s trailer. Vickie was smoking and I was puffing away too on one of her cigarettes. It had become a ritual every time I visited her; she loved the idea of seducing her doctor into a forbidden cigarette. Vickie had called to tell me she had something that Cameron Tolliver, the patient Sue McCoy operated on, had entrusted her to give to me. I had brought Vickie some prescriptions and had looked in on Clyde, who was sleeping, the TV blaring away as usual. I saw some ominous signs: a gauntness had crept in, there was not much flesh in the bare leg that showed under the sheet, his skin had taken on a darker, nut-brown hue.

  It was the fall of 1988 and the wildflowers around Vickie’s trailer were putting on a show. The Vickie McCray standing next to me was different from the one I first knew. She was a veteran of support groups and a busy volunteer at TAP. There was a fine stubble of hair peeking out from under her bandanna. I teased her that I was the one pulling my hair out now. Vickie’s best friends were Bobby Keller—the most outrageously campy and funny gay male in Johnson City—and Jacko, a relatively new patient to my clinic. “If you ask me, what brought us all together was when Cameron Tolliver got sick. Cameron was one
of those I liked right away in support group. Between you and me, he was the only one there who acted halfway normal the first time I went. He’d hardly talk, just listen. And when he said something, it warn’t no smartaleck thing like Bobby Keller, say. You could trust it. Kind of like the quiet wife of a jawing preacher, know what I mean? After he had that gallbladder surgery at the hospital, why, he just kept going downhill. And all of us started to go round his place to help him. I mean there wasn’t one person in support group that didn’t go to see him and help out.

  “His mind was clear right to the end. But he had that diarrhea so bad. Not many people could be around it; they’d come and ‘How-are-you?’ and ‘Can-I-do-anything-for-you?’ and light out of there faster than greased lightning. But Bobby, Jacko and I, somehow we just couldn’t leave. We got in there, put on them gloves and changed his diaper, washed him up. But as soon as you did it, there he’d go again. It was terrible: like some faucet being turned on. You know he warn’t eating nothing so it was like he was just shitting out his flesh, if you pardon my French. I hope to God that Clyde—or me—never have to go through that. Bobby Keller says he’d just as soon someone take a gun and put him out of his misery if he ever gets that bad. Is that going to happen to all of us? To Clyde? To me?”

  I lied and shook my head. The way the virus could attack the bowels was remarkable. In Africa, wasting and diarrhea are such discrete and common manifestations of the disease that AIDS is referred to there as “slim disease.” But even in North America, diarrhea is a common problem. And for some unfortunates like Cameron Tolliver, their entire fight with HIV is dominated by diarrhea. Cameron’s gallbladder problem had occurred on a backdrop of diarrhea that barely ceased. Why some patients suffered so with diarrhea was quite mysterious.

  Cameron’s gift for me was two small polished stones, about the size of walnuts—“lucky” stones, he told Vickie they were. One was a shiny mahogany and the other a variegated green and brown stone with what looked like a third stone embedded in it. They were the kind of stones you might see in a shop that sells crystals and incense sticks. They were beautiful. I rubbed them together between my fingers, hearing them click together like marbles. They made me think of Mrs. Paez and her genuine pearls.

  How I wished Cameron had been able to give them to me himself. I wished that Cameron could have explained to me the significance of the stones. If he had an interest in stones and crystals, I had never known about it. In our encounters in the hospital, he had allowed me to dictate the pace and the nature of our interaction. His illness had dominated everything. So much of who he had been as a person I was now left to imagine. That was the way things worked. I knew everything about them—and nothing.

  “He had something for each one of us, little gifts like that,” Vickie said. “And the best part is he was living in this one room of his friend’s house. The friend was hardly ever there, and the only reason Cameron stayed was cause he had been looking after his friend’s old mother. She was in a wheelchair and real weak, and it came to a point where he was weaker than she was. The visiting nurses used to come and take care of the old lady, and Cameron would ask us to wheel her in so he could see her and make sure she was all right. Bobby Keller has been going over there about every other day checking on the old lady ’cause he knows Cameron up in heaven is still worrying about her. Bobby says he thinks it’s not long before she’s going to have to be in a nursing home.”

  Bobby Keller, the clown, whom Vickie had been so suspicious of when she first saw him in support group wearing his leather outfit, had revealed his sweet caring side to Vickie. And running with him nowadays, his buddy, was a new support group member, Jacko. Vickie said that Bobby and Jacko would come over to Vickie’s trailer, help her clean house, go shopping for her, baby-sit Clyde while Vickie ran some errands.

  Jacko was not a native of east Tennessee. He had lived in Sacramento until he was diagnosed with Kaposi’s sarcoma (KS). I had assumed Jacko was his pet name, but I learned from Vickie much later that it was an abbreviation for Jackie O, a reference to his getup at a Halloween party some years ago, a nickname that he then adopted. He had a sister who lived in east Tennessee, and she took him in when he lost his job and his lover died. She was married with grown children; her husband was employed by ETSU. She freed up a bedroom for him and took care of his medical expenses until he finally qualified for Medicaid.

  Although I had seen KS frequently in Boston, Jacko had the most florid KS of any of my patients in Tennessee. When he first walked into my clinic, it was difficult to see beyond the KS and discern the young man underneath. A fleshy, violaceous KS lesion hung down from his right eyebrow, almost covering his eye; more lesions were peppered over his face. When he opened his mouth, his palate was covered with a dark purple patch of KS and there were more KS lesions on his cheeks. One unusual KS lesion had grown out from the space between two teeth and hung down like a tiny parachute.

  Jacko showed me the birth and evolution of a KS lesion. One day he came to my office with a little puffiness under his left eye and a yellow blemish with well-circumscribed borders under the eyelid. I would have sworn that he had been punched and that this was a four-day-old bruise that was going through its color changes. Jacko informed me otherwise: it was a new KS lesion “being born.” He could recognize an even earlier stage, well before anything was visible externally, when he would feel a little tingling in that area. The next time I saw him, the original yellow bruise had turned purple and swelled up, becoming a perfect match to all the other lesions on his body.

  KS was intriguing. This once-rare tumor had become epidemic in the era of AIDS. With AIDS, it was almost exclusively seen among gay men: it was extremely rare among intravenous drug users or hemophiliacs. Despite being a cancer, it behaved almost like an infection associated with fecal-oral transmission, much like amebiasis in gay men. Initial KS lesions, as with Jacko’s, were often in the mouth or on the nose, as if to confirm this method of spread. The penis was another common site for a KS lesion.

  Even though KS was disfiguring, if the patient was fortunate it remained largely a cosmetic problem. I generally did not make any attempt to treat KS unless I was forced to. Patients usually succumbed to other problems unrelated to KS.

  Occasionally, the KS could suddenly erupt, with new lesions blossoming all over the body. This had happened to Jacko. The tumor formed one big confluent patch on his legs. It obstructed the lymphatic drainage of the right leg, causing the leg to swell and take on the appearance of a tree trunk whose bark was oozing. I began Jacko on chemotherapy for this reason. The once-a-week chemotherapy was mild in its side effects—no hair loss or severe bone-marrow suppression—but it did make Jacko’s leg shrink gradually in circumference. It had very little effect on the size of the KS lesions elsewhere in the body.

  While I was trying to find a dentist to see him and remove the broccoli-shaped KS lesion that hung down between his teeth, Jacko took matters into his own hands: he tied a loop of dental floss around the base of the tiny tumor and pulled the noose tight. The lesion lost its blood supply and dropped off.

  Jacko had missed several clinic visits with me. I felt slight hostility from him. He was very close to Bobby Keller, and I wondered if Bobby had told him the story of how I put his lover, Ed, on a ventilator against Bobby’s wishes. Bobby was friendly to me, but that incident always seemed to stand between us, something I had been forgiven for but that neither of us could forget. Jacko’s hostility was directed not just at me but at all medical personnel. It was a barrier that neither Carol nor I had been able to penetrate.

  I asked Vickie now how Jacko was doing; I told her how difficult it had been for us to get to know him. How he had missed several rounds of chemotherapy and had not answered our calls or our reminder postcards.

  “He’s not doing that well, if you ask me. That KS is all over the place. He uses Avon foundation to cover it on his face. But it’s not much use. Remember that last real warm weekend we had? Well, I invited him a
nd Bobby over for a cookout. He asked me if I didn’t mind if he wore short sleeves and shorts—he usually never goes anywhere except in long sleeves. I said I didn’t mind at all, I wanted for him to feel comfortable. And when he came, I never realized how many of the KS things he had. I mean it’s all over his skin, as if he’s been spray-painted with it. And his left leg is still swollen. But that toe that used to hurt him real bad don’t bother him no more. You know why?”

  I shook my head. I remembered that one of the toes on his right foot was completely purple with KS.

  “He said the other day, when he pulled off his sneaker, the toe just came off. Evidently it was just about dead. Said he picked it up and threw it in the garbage.”

  Vickie shuddered as she said this. I wondered if Jacko had gone the dental floss route on his toe.

  “Now, I been around these gay men quite a bit,” Vickie said. “But I think Jacko is the only one that is like real guilty about being homosexual. It still bothers him in support group that when we get done, everybody gets up and hugs everybody else. Of course Clyde, when he used to go, just marches out whenever he pleases. And old Ethan Nidiffer don’t stay for no hugging. He just chugs on out of there; he hates it that people smoke in there cause it bothers his lungs. Jacko stays, but he doesn’t care for all the hugs, though he’ll do it anyway. He says he wished he’d never been born homosexual. That it is a cross he has to bear. He was always a loner according to his sister, someone who more or less tried to disappear into the background, if you know what I mean? And now, bless his heart, he can’t disappear into the background even if he wants to.”

  I asked how she was coping with Clyde.

  “Here we are talking about other people and meanwhile I’ve got me one here that’s just about to drive me crazy! Clyde is slipping. There ain’t two ways about it. Did you know we been to the Grand Ole Opry? And the Knoxville Zoo since I talked to you last?”