Fred had short dark brown hair and a beard, wire-rim glasses, and despite a jocular manner was very intense, very focused on his surroundings and on everything that was transpiring. He wore a red T-shirt under his bomber jacket.
Otis was blond, slim, his hair cut close to his skull and with an even stubble of a beard. He was soft-spoken and laid-back; he had a pronounced Tennessee drawl and was content to let Fred speak for him.
Fred and Otis, though anxious about their visit, seemed much more self-confident than the Abingdon couple. They reminded me in dress and appearance of gay men I had encountered in the AIDS clinics in Boston: a clonish, Tweedledum and Tweedledee sameness, a sense that they belonged to a gay community, that they subscribed to a defined gay aesthetic—at once together, at once defiant.
Once Fred began to speak, I was almost oblivious to Otis. Fred’s speech tended to rumble within his throat and bubbled out as if under pressure. He spoke in long sentences with a suppressed chuckle or a Harrumph! preceding something ironic or cynical he was about to say, the punctuation between phrases consisting of ums or ahs or a guttural sound in his throat. Even as you talked, he made grunts of agreement. He sounded like one of my former physiology professors:
“Both of us had the antibody test, uh, antibody for the HIV, just the other week, and the results, unfortunately, harrumph! were positive both on the ELISA, and, uhm, positive again, harrumph! on the confirmatory western blot, and so we, uh decided to seek help and, harrumph! here we are,” etc., etc.
He pulled out two slips of paper from the health department from a manila folder he was carrying.
In that instant, the number of HIV cases in Johnson City, counting Gordon, and Ed and Bobby, had just increased to five. Seven, if you counted the two who had died before I started my practice.
“I guess there is something that we have to tell you, or perhaps you already know from the chart,” said Fred, “but neither of us is insured, covered in any manner, whatsoever.”
I said it made no difference to me.
I took Fred’s chart first and began to take his history; inevitably, I wound up taking both their histories together.
Fred was born in Morristown, Tennessee. He had gone away to college in Florida, worked for his master’s at Madison in Wisconsin. Eventually he joined his uncle’s accounting business in 1983. Fred’s speech reflected this education. He used high-powered words, punned frequently and had a wry sense of humor. Fred and Otis had met in Tennessee after they both returned home. They had been living together for one year.
I asked Fred why he came back. “I realized teaching college wasn’t for me. I had thought it was. That was what I had done all the years of postgraduate work for. And when I started to teach, it was a disappointment. It was clearly not what I wanted to do. I started to help my uncle out while I decided on what next. And I couldn’t think of a better place to live than Morristown. No traffic jams. The store clerks are actually polite. I just slipped into the accounting business.”
Otis was born in Rogersville, Tennessee. After his teen years, he had left the area and traveled extensively. He was trained as a cook and most recently had lived in the Castro District of San Francisco where he worked for five years before returning to Tennessee. Otis’s return, in contrast to Fred’s, had the same arbitrary quality of his departure. But he came back from California in 1986, because “I guess I was tired of it, I don’t know.”
And tiredness was what Otis had been feeling for some time now. Eight months before he had had a severe attack of shingles. It had left him with a scar on his chest and pain that continued to the present time.
Fred, on the other hand, felt quite normal.
Fred made it a point to tell me that he did not think that Otis had necessarily infected him. Fred had had “high-risk sex” (his term, not mine) prior to that with several people who he knew had come down with AIDS. He seemed more concerned about Otis than about himself. Fred was extremely well informed about AIDS.
I went through Otis’s “past history” (two episodes of rectal gonorrhea, heavy use of “poppers” in the past, herpes of the penis and anus, and most recently the shingles), and his “social history” (moderate alcohol consumption, not infrequent pot use—“whenever I can get any”—and no intravenous drug use).
When I asked Otis about whether he often had anal receptive intercourse, Fred piped up from behind me: “Uh, not often enough!”
On Otis’s “Review of Systems”—a checklist of questions that cover every organ and function of the body—it was clear that Otis had been having some night sweats, some weight loss and a lot of fatigue. He had occasional bouts of diarrhea that mysteriously came and went. I had Otis undress and when I examined him I found diffuse enlargement of his lymph nodes and little else.
While I was doing Otis’s rectal exam, Otis looked over to Fred and said, “I wonder if he’ll still respect me in the morning?” It was only about the third complete sentence he had uttered in all his time in the room.
This was the second time in a month that I had examined a couple together in one room. In years to come, I did this often—always with gay couples, never with a heterosexual couple. Now, while Otis dressed, Fred undressed.
In contrast to Otis, Fred seemed quite well. I could find no lymph node enlargement. During his rectal exam he hummed “Moon River,” while Otis rolled his eyes in mock exasperation.
I was curious about their looks. If Ed and Bobby had aspired to the clean, scrubbed choirboy looks—or, in Ed’s case, as close to it as a diesel mechanic can come—then Fred and Otis seemed to be deliberately cultivating a rougher appearance with the short hair, the stubby beards, the jeans and leather jacket. Even the slight unwashed odor seemed deliberate—they were not unclean but they were not attempting to douse the man scent with antiperspirants or eau de toilette. As yet, I did not know them well enough to ask them about this.
I did ask them what they thought about the Connection. Fred laughed and Otis smiled.
“It’s tacky,” said Fred. “Really campy.”
“Campy?”
“You know: lots of drag queens and ‘shows’ and all that. The more theatrical and dramatic elements. Not my cup of tea.”
“What is your cup of tea?”
He laughed. “There’s a leather place in Asheville that would qualify.”
This made sense to me. Fred and Otis’s clothes were a dressed-down version of the extreme leather look. They were not wearing chaps, or handcuffs, or chains, or nipple rings, but I could see where these accessories would fit well. In later years, when I first saw Robert Mapplethorpe’s photos, they reminded me of Fred and Otis and the earthy scent I associated with them.
Fred and Otis left with follow-up appointments for a week from then, at which point all the blood tests and the chest x-rays I ordered would be back. The apprehension and tension they must have experienced while waiting for the HIV test to come back was now behind them.
Ahead of them lay a difficult road.
AFTER EACH PATIENT I examined, I would dictate my findings to be typed up later and put in the patient’s clinic chart. The transcriptionist, when she saw me in the hallway, would nervously scurry away. My patients’ stories, the descriptions of how they came to be infected, the details of their lives in which I took delight, were scandalizing her! “Campy,” “queen,” “fisting,” “rimming,” and “water sports” were not in the medical dictionary that sat next to her keyboard.
There was a reason for a lot of my questions: for example, there was thought to be a correlation between amyl nitrite or “popper” use and Kaposi’s sarcoma (KS). There was also a correlation between KS and anal practices: some people argued that KS behaved as if it was a sexually transmitted disease. Not only was it common among gay men, within that group it was most common among those who engaged in oral-anal sex and anal receptive intercourse with greater frequency. To know how promiscuous they had been was not a matter of prurient interest on my part: it gave me some sense for
their exposure to syphilis, Herpes simplex, cytomegalovirus—all infections that could linger in the body and flare up when the immune system was suppressed.
But I was also interested in the patients’ stories for their own sake. I was fascinated by the voyage that had brought them to my clinic door. The anecdotes they told me lingered in my mind and became the way I identified them. Most of these stories I kept in my head. Some I recorded in a journal that I kept faithfully and that became very important to me as time went on. Occasionally, I would hear a story so outrageous that I would dictate it to be included in the chart for the sake of posterity. Here is one that I dictated and saved a copy of (this part of the dictation came under social history—after chief complaint, history of present illness, family history, past history):
“. . . on Mardi Gras, the patient states he walked down Bourbon Street in New Orleans at about nine in the morning, just as people were coming out onto the terraces. He was returning from an all-night tryst. Patient states it was common once the parade started for people on the terraces to yell ‘Take it off,’ or ‘Show us your titties,’ and to throw down bead necklaces to any woman who did. But it was too early for any of that yet. When the patient reached the gay end of Bourbon Street, the terraces were filling up with gay men who were readying their champagne brunches. Someone saw the patient’s lone figure walk down the street and yelled, ‘Show us your dick, show us your dick!’ Others on other balconies took up the chant. The patient states that he proceeded to take off his pants and T-shirt, fold them neatly and then lay naked, spread-eagled on his back in the middle of the street. And pretty soon, according to the patient, ‘you could no longer see me because I was all covered with bead necklaces raining down from the balcony.’ ”
7
VICKIE MCCRAY was a large woman whose usual attire was blue jeans and an oversize man’s shirt. Though she might have appeared benign in a hospital corridor, her appearance would have been unmistakably threatening if one encountered her in a dark alley. Thick forearms swung loosely alongside her hips. You could picture those forearms holding two babies and a sack of groceries. Or you could picture them locked around your head in a full nelson.
The first year I knew her, she always wore a red polka-dotted bandanna wrapped tight over her scalp and low over her forehead. As a result, the skin over her eyebrows was bunched up, and her blue eyes appeared deeply recessed in her skull. Her eyes were her prettiest feature.
When I saw Vickie, she was bringing her husband, Clyde, back to the University Family Practice Center for the fourth time in six weeks, and she had completely run out of patience. After lifting all 180 pounds of Clyde out of the car and setting him in one of the wheelchairs at the entrance to the center, she wheeled Clyde in past the startled receptionist. Clyde was a dark, handsome man with thick bushy hair and a bristling mustache.
“Now look, you all,” she said to the doctors gathered outside the exam rooms. “Just look at him! Would depression or nerves do this to a grown man? Would it make him lose weight? Would it make him stop talking and become like a baby? Would it make him hiccup like this for weeks? You all are going to put him in the hospital. You will find out what’s wrong with him, and there ain’t two ways about it!”
Clyde sat passively in the wheelchair, looking on with little understanding. When a hiccup broke to the surface and rippled across his face, he winked at the doctors.
In the hospital, the family practice doctors ran every test in the book. A specialist was called in for each organ that showed any trace of being dysfunctional.
The CAT scan of Clyde’s head showed his brain had shriveled and atrophied in a way that one would have expected to see in a seventy-year-old with Alzheimer’s disease. The picture was distinctly abnormal for a thirty-five-year-old truck driver who had been well six weeks prior to the test. Dr. W, an astute neurologist, ordered the HIV test on Clyde’s blood—more for completion, I suspect, than with any real belief that this was AIDS. And when this came back positive during the second week of Clyde’s hospitalization, I was called in.
The doctors told Vickie that Clyde’s HIV test indicated he had AIDS, and moreover, she should be tested.
After hearing the devastating news, Vickie left the hospital and drove out to their trailer. She called up Clyde’s sisters and his mother and let them know. Then she went to her bedroom and loaded the gun Clyde kept in his closet. She had in mind that she would go to the hospital and kill Clyde—not out of anger, but only to put him out of his misery. She had seen him reduced mentally and physically to a shell of his former self, and now she had been told that it was only going to go downhill from that point. After she was done killing Clyde, she planned to pick up the kids—her four-year-old son and twelve-year-old daughter—go back to the trailer, shoot the kids and finally turn the gun on herself. This seemed like the most logical option given the impossible events that they would all have to face if they went on living.
She was fumbling with the gun, stuffing bullets into it, when the box fell off the bed and scattered bullets all over the floor. It was while Vickie was on her knees, picking up the bullets, that she had a vision of her children holding hands, standing by the bedrail and saying to her, “Mom, we have a right to live as well. What did we do to deserve this?”
At this point, Vickie dropped the gun and fell onto the bed and wept. This is how Clyde Junior and Danielle found her when they returned from school.
WHEN I WENT TO CLYDE’S room, I found Vickie there with him. I had read through the chart and had understood the medical elements of the case. But the story of this couple was not in there.
I prefaced my interview by telling both Vickie and Clyde that I was going to ask personal and touchy questions that were not meant to offend, only to leave no stone unturned. Vickie was standing next to the head of the bed, her hand protectively on Clyde’s shoulder. She regarded me with curiosity and suspicion: this foreign doctor, this “infection” specialist. I, in turn, was quite intimidated by her.
“Has he ever used intravenous drugs?” I asked. “No!” Vickie answered without even looking at Clyde for confirmation.
“Has he ever had sex with another man?”
“Hell, no!” said Vickie.
“Yes,” said Clyde from behind her.
“WHAT?”
“Yes,” Clyde said.
Vickie looked at Clyde, her jaw dropping, anger flashing in her eyes. “He don’t know what he’s saying! They’ve pumped him full of Thorazine. Don’t pay him no mind. It’s the Thorazine what does him that way.”
“I’ve had sex with men,” Clyde said again. “With Jewell, all the time.” He clammed up after that shocker, tuning both of us out in the manner of a peevish two-year-old. He began to play with the remote, clicking through the channels until Vickie snatched it from him, at which point he pulled the sheet over his head and lay still like a mummy.
As it turned out, Clyde was telling the truth. A spark of lucidity in a brain that was otherwise hopelessly muddled had brought out this unrepressed and unabashed admission. Clyde never had a blood transfusion, he had never used intravenous drugs, and, to our knowledge, never had a prolonged relationship with an HIV-infected woman. Clyde Odum McCray had contracted the AIDS virus in the same manner as almost every other nondrug-using male in North America.
Medically, then, Clyde’s bizarre symptoms—the mutism, the weight loss, the regression to second childhood—were no longer a puzzle: He had a positive antibody test for the AIDS virus, he had brain atrophy on his CAT scan, and on mental status testing he was showing a global deterioration of all his cognitive functions—this was classic AIDS dementia.
I decided not to pursue any more history. Vickie was too distraught. She was wild-eyed and mute; she relinquished her post near the head of the bed and now sat in the recliner, holding her head in her hands.
I gently pulled the sheet away from Clyde. He was petulant but allowed me to examine him. I did my own mini mental status exam, a crude version of what
the psychologists had already administered. Clyde was oriented to person—he knew who Vickie was, who he was—but not to place and time. I gave him the names of three objects in the room and told him I would ask him in a few minutes to repeat them to me. Then I asked him to subtract 7 from 100. He came out with 93. I asked him to subtract 7 from 93. He could go no further. I now asked him for the names of the three objects I had mentioned earlier. He recalled only one. Yet his remote memory for events like his birthday, the town where he was born, his father’s name, was intact. This is characteristic of many types of insult to the brain: recent memory is lost while remote memory is preserved; new stuff is lost before old.
I looked carefully for the lesions of Kaposi’s sarcoma but did not find any. Clyde seemed to be in good physical shape in terms of muscle mass and tone. His heart and lungs were quite normal. His coordination was poor and his reflexes extremely brisk when I tapped on his tendons with my reflex hammer.
I reported to Vickie that other than his confusion, Clyde was in good shape. I elected to return later and chat with both of them some more. I felt I needed to leave the room. I gave Vickie my card and told her to call me any time. When I left, Vickie had risen to stand next to Clyde, to quiz him, to explore further his revelation to us, but Clyde had the sheet pulled over his head.
I drove over to the University Practice Clinic—I had arranged to see Ed Maupin and Bobby Keller and give them the news about their tests.
They were waiting for me.
“Our test come back positive, didn’t it, Doc?” Ed asked me, as soon as I walked into the room. I nodded my head. He seemed resigned to this fact. Bobby Keller began to sob, his big shoulders shaking, his face taking on an expression that could have passed for laughter but for the tears that were spilling out of his eyes.
I told them how everything now rested on their CD4 count; if it was high they could count on doing well for years perhaps. And by then, God willing, we would have some sort of treatment to offer.
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