Dying of AIDS

A Human Tragedy Plays Out in Slow Motion

He'll never hike the Royal Inca Road.

Seeing the tiled roofs of Cuzco at the head of the road that snakes along the roof of the world to the ancient city of Macchu Picchu is one of the dreams he's had to turn loose. Just one of so many.

"I've lost most of my whole generation. I've lost most of my friends, and now, Danny. How much more am I supposed to lose? I'm just tired of it. I'm tired of having it, tired of treating it, tired of dealing with it. Tired of never beating it, not one time. I don't even remember life before AIDS," says David McNabb as he opens his scrapbook and turns to the photograph of a handsome man with a rakish smile.

"This was the first person to die of AIDS in Knoxville," he says, looking at the picture of Rell Lovejoy, a New Yorker who moved down to Sevier County in the early ’80s to escape the mysterious "gay plague."

In 1985, nobody dreamed the disease could have an incubation period of 8 to 10 years, so Lovejoy couldn't know that the virus was growing inside him when he fled the city for the shelter of the remote and lovely green mountains of East Tennessee.

Next, David remembers Grey Heinsohn, the son of a prominent Sevier County family. "He was the first person I knew with AIDS, the first person I ever visited. He was the first of the Knoxville 'A-list' gay men here to have AIDS. I remember his funeral. His brother was standing there greeting people at the church door, and he looked exactly like Grey, strong and healthy again. It seems like so long ago.

"AIDS didn't penetrate our consciousness here until ’84 or ’85. I can remember saying to a friend in Atlanta, ‘I am so tired of reading all this shit about AIDS. Can't they write about anything else?’

"I remember people talking about it, but I thought it was confined to people who used a lot of drugs and had a ‘busy’ lifestyle.

"When I heard it was a virus and it was sexually transmitted, I turned to Danny and said, ‘We're all going to die.’ By gay standards, I was practically a monk, and that didn't protect me …"

He keeps turning pages and comes to Lynn Hampton, a good-looking young architect from Spring City who'd contracted the virus in Atlanta and come home to die. Lynn was a gentle spirit and one of the first persons with AIDS (PWAs) David nursed. He died just before Christmas, 1989, and was the first friend whose death David attended.

"He was one of the sweetest human beings I've ever known in my life. It was an enormous privilege to care for him," David says. "And he required a lot of care. He had meningitis and must have had seven IV pumps going by the end. The night he died, his parents had already left, and I called his mother to come back to the hospital. I cleaned him up, picked up the room. After a while, he woke up and saw me sitting there crying. He asked me what was wrong.

"I told him, ‘The doctor says you're not doing too well.’ He motioned for me to come over and sit on the bed, and he put his arms around me and said, ‘There's nothing to be afraid of.’

"Later, when his mother arrived—he was her treasure—I told her, ‘Sometime tonight he's going to ask you for permission to die.’ Along about 2:30, he said, ‘Mom, I can't do this anymore,’ and she said, ‘It's all right honey, you don't have to.’"

David lingers over the page with the newspaper story about Dick Kirkendol, the generous neighborhood pharmacist and former Fountain City Man of the Year whose memorial service in January 1990 brought together AIDS activists and mainstream Fountain Citians in one of the biggest crowds ever to flood Gentry-Griffey Funeral Home.

Further back, there's the 1991 obituary of Dorothy Skeen, a young woman from Jefferson County who moved to Florida and got a job at Disney World. She met an Australian man and fell in love, married, and was transfused with HIV-tainted blood when her husband beat her so badly that she was hospitalized with a ruptured kidney.

"She was so beautiful and so bright," David says. "It just ate her alive."

He moves on to the pages marking the time in 1991 when he lost three friends in the space of two weeks. One was Fred Horowitz, who came to Tennessee with Rell Lovejoy and became Knoxville's best known person with AIDS. He was a founder of AIDS Response Knoxville and spent a great deal of time talking to high school students about AIDS prevention. Fred put up a ferocious fight, and became a close friend to Danny and David, living with them during the last years of his life. They cared for him in the bedroom across the hall from the room where Danny now spends his days.

"For Jews, it's important to remember. That's why I keep this stuff around," says David, a convert to Judaism, as he closes the book and puts it on a shelf.

"It's a trick of the psyche, I guess. We transform the grief of loss into the pleasure of memory."

His reverie is interrupted by the doorbell. It's the nurse from Ft. Sanders Hospice here to help with the heavy lifting. David goes with her to the master bedroom where Danny lies dying.

DAVID MADE A DOWN-PAYMENT ON TWO PLOTS in the New Jewish Cemetery this June. He is a slight, youthful 40-year-old who doesn't look his age. If you didn't know better, you'd probably think picking out cemetery plots was an oddly morbid preoccupation for a day when he could have been out water-skiing.

"It was a real fun day," he says ironically, disappearing into his living room and returning to the kitchen table a second later with two official-looking certificates of reservation issued by Heska Amuna Synagogue.

He says it wasn't easy deciding where he and Danny should be buried.

"I tried to ask Danny, and he was no help. He said, ‘What does it matter to me? I'll be dead …’ I finally decided that we should be buried here. This is our home, this is where we have lived our lives together.… Danny hasn't talked to me about dying. He's talked to other people about it and I think I know why—he knows it is a conversation that will greatly upset me.

"Not many people these days are cemetery goers. I am. But if I had my druthers, I'd be cremated, but that's forbidden under Jewish law," he says. "In Jewish tradition, you're supposed to visit the grave twice a year—at Rosh Hashanah and on the anniversary of the death.

"This way, people in our congregation will look at the headstone and remember us …"

There's a brief, tersely-worded obituary in the drawer with the cemetery reservations:

Goodman, Daniel Joseph, 44. Passed away peacefully at home, following a long struggle with AIDS, on ------, 1994. Graduate of Indiana University and the University of Tennessee College of Law. Practiced law in Knoxville from 1978-1988. Was executive director of AIDS Response Knoxville, 1990. Survived by longtime companion David McNabb....

Attached to the obit is a long list of names and phone numbers marked "People to call." Mary Linda Schwartzbart, a friend and a fellow member of the Heska Amuna congregation, will preside over the week of mourning known as shiva. All that's left is to fill in the date.

He's bought himself a measure of peace by planning ahead, but David has no illusions that his thoroughness will soften the pain awaiting him.

"You can't run around in a circle and scream," he says. "And you can't grieve in advance. The heart can't break until it's broken. There have been times when I have to will myself back to the present by saying it's not now; you can't do that until after; it's not time yet …"

For now, he is listening for the tinkle of the bell Danny keeps at his bedside. For now, his life is trying to find something Danny can eat, changing soiled diapers. The high point of the day is when the hospice nurse comes, the low point is the sixth time he has to change Danny's bedclothes in a single day.

"Danny is dying, but we are dying, too …"

DAVID MCNABB AND DAN GOODMAN ARE LAWYERS, community activists and life partners of 17 years. They retired from the practice of law in 1988, not long after they learned they were both HIV-positive.

David is a backsliding Republican who was one of Ronald Reagan's 1980 Knox County campaign managers. Danny, 44, has been active in community theater and was for 18 months the unpaid executive director of AIDS Response Knoxville. Earlier this year, he received an award from the National Association for People With AIDS "for demonstrating outstanding courage and strength in facing the challenges of living fully with AIDS."

In 1988, David was a member of the AIDS Advisory Committee of the state Department of Health and Environment. He was the only member who was HIV-positive. He has recently been awarded a National Outstanding Caregiver Award by Mary Fisher's Family AIDS Network for his work in caring for people who have died from AIDS. (Mary Fisher was a featured speaker at the 1992 Republican National Convention.) He figures he's had a hand in taking care of around 20 people—counting Danny.

DANNY

He is a wraith, thin as a sliver and so pale he is almost luminous. Huge dark eyes are sunk deep in his skull. He appears to be detaching himself from the world of the living and spends much of his waking time staring off at something only he can see. He is sometimes alert, but often not, and he drifts from serenity to peevishness with disconcerting speed. His short term memory is shot, and he warns friends, "You can't trust a thing I say."

He's not in much pain, but he has chronic diarrhea and hiccups and hasn't eaten a meal in more than a year. He exists on the liquid supplement Ensure, popsicles, and thin slices of watermelon that David carefully seeds for him. He has been essentially bedridden for some 18 months, and has lost more than 100 pounds. He says he's not sure what keeps him going.

"Stubbornness, I guess. I just can't understand how I'm surviving. I must be spiritual if I can draw it out of the air.

"But the real answer is David."

David cares for him day and night, bathing him, feeding him, changing his bedclothes and his diapers. David says people tell him they couldn't do what he is doing. That, he says, amazes him.

"All I can say to that is they must never have been in love."

Not so long ago, you might have seen Dan Goodman roaring around town on his motorcycle. He was a big, dark-haired guy who weighed 220 pounds. He graduated from UT law school in 1978 and struck out on his own, building a thriving solo practice. He was a talented litigator who did a good deal of criminal work and had success in labor law, as well.

In 1985, he won the Knoxville Community Theater's Best Actor award for playing Henry Drummond in a production of Inherit the Wind, a play about the Scopes Trial. Drummond was the character based on famed lawyer Clarence Darrow, a passionate defender of human rights.

Danny and David met in 1976, when they were law students. They were both transplants from Indiana—Danny from Indianapolis, David from a tiny town called Carthage. Danny was recently divorced, David was a second-year student who was looking for a place to live. He rented a room from Danny, and they soon found themselves drawn to each other. They have been together ever since, and David says they have never felt the need to hide.

"Everybody in the courthouse knew about us," David says. "We never made any secret of our relationship."

Danny retired in 1988 after a debilitating bout with phlebitis. Although he hadn't been tested for HIV at that point, David had already tested positive, so the two of them assumed that Danny was infected too. It proved to be a devastatingly good guess.

He has survived three bouts with Pneumocystis carinii, a deadly pneumonia that creeps into the lungs of those with severely compromised immune systems, "eats" lung tissue, fills the lungs with pus and smothers the host. It is a leading cause of death among people with AIDS.

Danny's vision is being affected by cytomegalovirus (CMV), severe cases of which can destroy the retina and cause blindness within 48 hours. The treatment for CMV involves intravenous doses of gancyclovir, a drug so toxic that Danny would probably not survive it.

He's not taking any of the drugs used to treat AIDS, because he and David have no faith in them, particularly not AZT, which was once considered the "gold standard" of AIDS drugs but left Danny severely anemic.

"It's a totally worthless drug. I wouldn't even want to catalog what AZT did to me, and I don't know anybody it's helped," Danny says.

Externally, at least, he's been spared the disfiguring lesions of Kaposi's sarcoma (KS), a skin cancer previously found in elderly men of Mediterranean origin. It has been discovered that most gay men who die of AIDS have internal KS lesions.

He scoffs at the notion that progress is being made in AIDS research.

"Progress? That's the biggest lie of all. People are just totally disheartened. And it's not a question of money, and it's not a question devoting talent to the problem. It's a question of knowing where the heck to go.

"My theory has been to keep on going, take a treatment and hope it works. Now, nothing works, and I feel very limited, intellectually and physically."

He lights a cigarette and turns up the volume on his TV, signaling that he's tired of the chatter around him. He tunes his guests out and goes back to staring into mid-space.

Stephanie Hall, the director of the Knox County Health Department, says Danny is correct in his assessment of AIDS research.

"Five years ago, I would say to patients, 'You need to do everything you can to get control of this disease, because we may come up with a cure sometime down the road. You can't give up …' I can't say that anymore."

She also shares his opinion of AZT. "With AZT, we thought we had this miracle drug, and then we discover it's not … We are at least a generation or two away from an effective vaccine."

Mark Miller, who is in charge of AIDS education for the Knox County Health Department, says this county has seen a 207 percent increase in reported HIV cases over the past three years. Although part of that is because of an expansion in the definition of HIV, even after adjustment there has been a 144 percent increase in Knox County AIDS cases in the past year.

Statewide, the largest increase in new HIV cases, 12 percent, has been among heterosexuals.

“The biggest increases nationally are in young people from 20 to 24 years old,” Miller says. "And the greatest proportion of those cases are among women. The risk is attributed to heterosexual transmission. We don’t have the data for Knox County yet, but the pattern will show up.”

AIDS Response Knoxville executive director Dawn Nickoloff reports that agency currently has a case load of 324 clients, which exceeds the 267 officially reported by the Health Department since 1982, or the 204 since 1992.

DAVID

He is a seeker. There's a book about Buddhism on the couch, and if you're interested, he can talk to you about the ships of the Imperial Russian Navy or the New Deal or Hebrew traditions in the Bible or the original intent of the Founding Fathers or the state of public education today. His friend Julia Tucker says that if she ever goes on Jeopardy, David will be her partner of choice, because he knows so much stuff.

David keeps a kosher kitchen and lights Sabbath candles next to Danny's bed every Friday evening. Before AIDS, he, too was a successful attorney, both in private practice and with the Department of the Interior. He relishes memories of the days when he helped Ronald Reagan's 1980 campaign and says that until the Religious Right started taking over the GOP, many gays were probably, deep in their hearts, born Republicans.

"I am sympathetic to some of the Christian Coalition's concerns. We all have a right to stand up and scream that kids can't read, but there's nothing about putting a Nativity scene on the lawn of the City-County Building that is going to make drug dealers stop selling crack.

"If every gay person would shut up and go back into the closet, how would it help America's children?"

He says religion is what sustains him, "because it gives me hope for life going on in the midst of this holocaust. And for the gay community, AIDS has been functionally equivalent to the Holocaust for Jews. It's been like a slow-motion holocaust, a slow-motion tragedy."

But his notion of faith has been altered by AIDS, he says.

"My faith in the God with the long white beard who does favors for people is shattered. When prayers don't get answered over and over and over again it changes your views. Anymore, I don't think God is responsible for things, good or bad."

He has no patience with those fundamentalists who say AIDS is God's curse on homosexuals.

"Gay people have to put up with that all the time," he says. "That God is always judging us and punishing us. I wonder if He was mad at those fundamentalists down in South Georgia when He sent the floods this summer?"

OUTWARDLY, HE IS CALM. Even when he says he sometimes feels that his heart is being torn from his body, his voice is measured and matter-of-fact. When he discusses the disease that has ripped through their lives, he mostly talks about adult diapers and sponge baths and trying to find something Danny will eat.

He is just as matter-of-fact about his own health.

"I can read the numbers," he says referring to his T-cell count. (T-lymphocyte cells quarterback the immune system and let it know when it must go on the defensive against disease and infection.) Healthy people have a T-cell count of 1,000 to 1,200. For years, David's T-cell count stood between 350 and 450. Now it has fallen to 190, and he is having night sweats and bouts with thrush. He has been relatively healthy since he tested positive for HIV in 1986, but he believes he is on the cusp of serious health problems.

"My immune system is deteriorating. AIDS is a series of plateaus. Once you get on a plateau, you never climb back up to where you were. Danny is like a clock winding down, and one day, he's going to stop. Other people do a dramatic power dive into the dirt. That would be my preference," David says. He is an introspective man, and he has given a good deal of thought to assisted suicide, a way out taken by some PWAs.

"I think, if I were Danny and I didn't have me to take care of me, I'd consider suicide," David says.

Tough as life is for them, they are more fortunate than most people with AIDS. They have enough money to live comfortably. "If we hadn't been smart and white and male and educated, we would have had about $1,000 a month to live on, and we wouldn't be living like this, I promise you," he says, glancing around at his comfortable surroundings.

They both qualify for Medicare (you must live two years after a diagnosis to qualify) and Social Security, and Danny has a substantial disability insurance policy. David reached a settlement with his insurance company that allowed him to sell his disability policy back for $125,000. There has been an investment boomlet in the sale of PWA life insurance policies. This macabre practice is being marketed as a win-win proposition: buyers get a no-fail investment; sellers get the means to smooth over financial rough spots.

But sick is sick and dead is dead. And comfortable surroundings can't stop what is happening to the person David loves most in the world.

Sometimes he slips out to the post office or the grocery store to run an errand, breathe the air, remind himself there's a world outside the house where Danny lies dying. He grabs his moment of freedom before the panic sets in and drags him back.

But when he gets home, Danny often doesn't know he's there.

"One of the things dying people do is retreat inside themselves," David says. "Their perspectives get narrower and narrower until it gets down to one point, and that's the doorway. Danny is looking for that doorway and one day he'll just walk through."

There has been a 144 percent increase in Knox County AIDS cases in the Knoxville area in the past year.

© 1994 MetroPulse. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

Related Stories

Comments » 0

Be the first to post a comment!

Share your thoughts

Comments are the sole responsibility of the person posting them. You agree not to post comments that are off topic, defamatory, obscene, abusive, threatening or an invasion of privacy. Violators may be banned. Click here for our full user agreement.

Comments can be shared on Facebook and Yahoo!. Add both options by connecting your profiles.