On knowing and loving a person with AIDS. Coping with aids.

On Knowing and Loving a Person with AIDS

by Diane Hughes

One of my fondest memories of Pete occurred at the art show of a local science fiction convention which we had run together. I was cruising the aisles while Pete sat up front at the desk. His lover and my husband were keeping him company. A rather macho BNF walked in with his usual entourage. BNF is short for "Big Name Fan" and yes, indeed, there are people who derive considerable ego gratification from notoriety in science fiction fandom. Strange but true.

Out of the corner of my eye, I noticed that Mr. BNF's usual swagger had hesitated briefly, and that my usually reserved husband was doubled over laughing. It seems that as Mr. BNF had sauntered past, Pete, in a penetrating stage whisper, said, "That son of a bitch took me to bed when I was 19 and introduced me the next morning to his wife."

I first met Pete at a bookstore. It was our first commonality, mutual voracious bookaholism. Pete was obviously and delightfully gay. I distinctly remember the T-shirt which said "I'm not gay, but my boyfriend is." He was also an engineer with a Master's degree from Ga. Tech, and he worked in a research division of a major oil company.

A year later, I bumped into him again at the same bookstore. When I asked about his obvious poor spirits, he told me he had been officially diagnosed as having ARC (AIDS related complex). He was annoyed.

ARC was a diagnosis used to describe individuals whose T cell count had dropped below a certain level. T cells are involved in the body's immune system. I have been told that ARC is no longer considered a diagnostically useful concept. When Pete was diagnosed, it was an excuse to start treatment with AZT.

How to describe Pete as a friend? Well, he spent hours helping me with computer problems when I was barely computer literate. Once when I was complaining that my brain was tired from reading weighty dissertation material, he brought me a stack of Jackie Collins novels.

He was kind, thoughtful, funny, and mischievous. He also read about twenty books a week and offered free critiques, so he was useful too. Pete worked hard and played hard, but he certainly wasn't foolish. He didn't drink or use drugs or skimp on sleep. He simply refused to compromise his enjoyment and productivity in life because his body had been invaded by a deadly virus. There were simply too many books to read, wonderful meals to eat, and interesting conversations to have.

He was astonishingly lacking in bitterness. He did explain to me that he had contracted the virus during a sexual experience long before anyone had ever heard of AIDS. He had certainly practiced safe sex since the discovery of the virus. He never complained about how abysmally unfair it was that he innocently was infected while engaged in an act of love. And I doubt Pete ever had sex with a person he didn't love, although I will admit he gave his love with enormous generosity.

Pete lost about forty pounds in the spring. The weight loss didn't slow him down much, but it was accompanied by endless, annoying colds and coughs and skin rashes that took weeks to heal. He sounded tired whenever we talked, and our friendship was soon restricted to frequent phone calls. There were times when he sounded unhappy, but he blamed his blues on problems at work.

The first hospitalization was in the summer of that year. It had something to do with blood clots. He would never explain exactly what the physical problems were. It was as if he wanted to spare me and himself the sordid details. But I know there were blood clots, and endless bouts of herpes all over his body, and shingles. One time I told him that it sounded like he was being plagued with constant clouds of stinging gnats. He laughed.

The second stay in the hospital was in the fall. He went blind and was unable to work or read. He was unable to leave his bed without assistance, and he rarely left his bed except to visit his doctors. He had nurses eight hours a day. His parents handled the night shift.

I realize now that he tried to push me away. I'm such a stubborn, tactless soul that I ignored his efforts to spare me. It was only later when I talked to others of his many friends that I realized how many allowed him to succeed. All I knew at the time was that he kept our conversations brief. I thought he tired easily and for awhile I wondered if it would be best to back away and leave him be.

One day Pete's nurse told me how glad she was that I kept calling. She said, "His face lights up when I say you're on the phone." I started to call every day. Once or twice a week, I bundled myself and my intrepid two year old, Michael, into the car and trekked out to the suburbs to visit Pete. Sometimes I took my husband who loved him as much as I did.

Sometimes I took a baby sitter to play with Michael while I visited with Pete. Michael soon learned the expressway exit and would joyfully exclaim, "Go see Pete. Go see Pete!"

And he was a sight to see. Twisted, skeletally thin, and always in pain. Yet always gracious and gallant and patient and aware. He was always delighted to interact with Michael and he made every effort to maintain his sense of humor. I asked once if "George," a mutual friend, had visited. He told me wryly that George was "in denial." End of comment. George never came.

Fall gave way to winter. Christmas came and went. We made Pete audio tapes to occupy his time. He refused to allow anyone to read to him. He said it never sounded right.

The doctors said he could see again if he opened his eyes. He said the light hurt too much. The doctors said he could have maybe six more months if he'd try to eat and exercise. His nurses scolded him. His parents pleaded.

He told me he wanted to die. He was tired and he didn't want to fight anymore. I told him it was okay with me if he wanted to go. He and I shared a long and thoughtful goodbye with many appreciations and regrets.

He convinced his nurses and his parents that he was ready to go. He said his goodbyes. The virus was in his brain, and when next I saw him, he was only barely there, drifting in and out of hallucinations.

The day before he died, I called. His primary nurse talked to me half laughing and half crying. She told me he thought he was pregnant and would soon be giving birth. He was very happy. He died that night in the early spring. He was 32 years old.

It has been a year now. I have still not erased his name from my address book. I see it and I hurry past. My child called out "Go see Pete!" when we passed his exit for a while. We aren't out that way any more so I don't know if he really remembers Pete. I do, and I always will.

If you were moved by this narrative, we invite to read "I am not Resigned" by Terry Simerly, a therapist specializing in work with men with HIV. ("In my decade of such work, I have met many heroes.") This article is found in The Best of Pilgrimage; please click on our "How to Order" button.