Miami Herald (MH) - Sunday, September 8, 1991
Elinor Burkett; Herald Staff Writer

It's not that anything elaborate is afoot. It's just that Miss Manners gives no guidance on etiquette for celebrating survival of a fatal illness.

His friends are worried about the guest list and menu.

Pruitt has AIDS -- and a different concern: "Will it tempt fate?"

Pruitt is not, by nature, superstitious. He's a lawyer. A rational man. But when you've defied the odds, you learn a healthy respect for the inexplicable.

Pruitt's survival is inexplicable. His doctors can't tell him why he has lived three times longer than most AIDS patients diagnosed in 1986. The Centers for Disease Control can't even tell him precisely how much company he has.

But Pruitt is not alone.

Hundreds of Americans have lived with AIDS -- full-blown, medically defined AIDS -- for three, five, even nine years. Ten percent of the AIDS patients diagnosed in the first years of the epidemic survived to their third anniversary. Three percent, including Pruitt, have survived to their fifth.

Each survivor has his own explanation.

David Blum, a Coral Gables man who turned the five-year corner in July: "the message of Jesus Christ."

Michael Callen of Los Angeles, at nine years since diagnosis the nation's most vocal long-term survivor of AIDS: "luck, Classic Coke and the love of a good man."

Jim Pruitt: "I'm alive because Kevin broke open the piggy bank and emptied it all out for me." Kevin Chan, a businessman, has been Pruitt's companion for 12 years. "I'm alive because I have someone to come home to, to sleep with."

The nation's AIDS researchers have pieced together a picture of long-term survivors:

* 119 of America's first AIDS patients -- the 4,073 reported diagnosed between 1978 and 1983 -- survived at least until 1987. In 1990, 103 were still alive, according to the Centers for Disease Control.

* Long-term survivors are most likely to be white, gay or bisexual men in their 30s, according to a University of California study. Patients in their 30s have lived longest -- averaging more than 15 months -- while patients older than 50 survive an average of only 10 months. Patients infected through needle-sharing or blood transfusion succumb more rapidly than those infected sexually. Male patients live longer than female ones, probably because women are less likely to be diagnosed early.

* The probability of dying of AIDS is highest in the first three months after diagnosis. Once you have survived for two years, the probability of death decreases steadily, as if one's body adapts itself to the disease.

Overall, survival times are increasing, probably because of better medical management of AIDS and the development of new drugs to prevent and cure the diseases associated with it. In Florida, median survival increased from 9.7 months for patients diagnosed in 1985 to 14.6 months for those diagnosed in 1988.

But the numbers say little about why some survive and others don't. Some researchers suggest survivors might have a milder strain of the virus or that they were infected only once rather than multiple times. Others believe prior health problems or genetic factors hold the key. Psychologists talk about positive attitudes, assertiveness, even old-fashioned good luck.

"There's some reason why these people have survived," says Dr. Ann Hardy, coordinator of the CDC study on the nation's longest survivors, But she admits that, a decade into the AIDS epidemic, no one yet knows what the reason is. "The answer's there. It's just a matter of finding it."

Jim Pruitt first learned he was different in 1983. New York's Mount Sinai Hospital was studying a group of gay men with mysterious ailments. Dr. Frederick Siegal pulled out a graph that charted their progress. "That's you," Siegal told him, pointing to one of dozens of dots arrayed across a page divided by a dark line. Above the line were patients with relatively healthy immune systems; below it, those with virtually destroyed ones.

Pruitt's dot was below the line. "You are the only one below the line who does not have AIDS," Siegal said.

Pruitt was not pleased. "I was furious. I felt fine."

That night he joked to his friends: " 'He says I'm going to die. Look at me. I'm fine. He's crazy.' "

In October 1986, Pruitt stopped laughing. He and longtime companion Kevin Chan had just moved to Florida to escape the stress of the city, the stress of watching their friends die. Pruitt noticed a spot on his palate. His doctor did a biopsy.

"Kaposi's sarcoma," the physician told him. Pruitt knew what that meant: AIDS.

He drew up a living will and a power of attorney. He joined a support group. He began screaming at University of Miami doctors for some kind of drug. He spent most of his time cuddled up on the couch next to Kevin.

"I did everything you can do," says Pruitt, now 39. He hasn't stopped doing that for five years.

He took AZT, the only drug approved to fight the human immunodeficiency virus. He eats well -- "an advantage of living with Kevin, who loves to cook." They live in an elegant and comfortable home filled with easy comfort and marble details.

He spends four hours a month with an IV in his arm to build up his blood. He inhales pentamadine for one hour a week to fight off pneumonia. He has his blood drawn every two weeks. He visits his doctor at least once a month.

"I've played the cards dealt me pretty well," he says. "I've been aggressive with the disease, in getting information and seeking therapies. It gives me a feeling of control and security. That may be an illusion, but it's an illusion it's good to have."

Even better, he believes, is having a focus for his energy, his talent -- and his anger.

"When I was first diagnosed I had just moved to Florida and I simply didn't know what to do with my life. What's the point? How do I start a career? Apply for a job? Do I take the Florida Bar? . . . I was at a loss."

Then he began designing new programs -- and writing grant applications to fund them -- for community-based AIDS groups. "Now I feel like I see clearly who I am and how to use skills I've had for a long time.

"Can this keep me alive? I don't want to jinx a good thing. . . . I'm hugely optimistic. It may be naive. I don't believe very strongly I will survive this. . . . But I hope for miracles. I don't believe that is as far-fetched as winning the lottery."

Jon Cullipher, who has survived AIDS for six years, rejects optimism.

He is selling off the family china.

Jon, Gregg and Ed needed place settings for 32 in the old days when their life in Miami was still a party. But Ed died on July 24. Now there simply aren't that many friends left for the two remaining partners to invite over. Now Cullipher is lucky to have the energy to go out to Howard Johnson's for dinner.

Cullipher, 34, never counts the months or years he has survived. "I prefer not to think about it," he says quietly. "Survivor guilt."

Survivor guilt grows at the funerals of men and women whose months and years never added up to one's own. It persists with the nagging question: Why me?

"I remember when I first recognized it as survivor guilt," says Cullipher. "I told my mom that all my friends she had met when she visited me here were dead. That's when it hit me.

"I know I haven't done anything to feel guilty about, that each of us survives to our time. But I've lost almost 500 friends and I'm still alive."

One of Cullipher's companions, Ed, was diagnosed in 1984. The following summer, Cullipher landed in the hospital. His doctor found his lungs coated with candida. The simple yeast infection had already become a buzzword in the gay community. Candida meant AIDS.

In those days, Jon, Gregg and Ed were just starting out.

"I had a good job, Ed was in a stable position and Gregg had just bought a house," he says. "We were preparing for our futures, for careers that would bloom when we hit our 40s.

"Suddenly, we had to adjust our vision and goals to the short-run. We couldn't start making plans for our 40s."

Cullipher retired from his job as an accountant for a bank in March 1989. Now he works as a volunteer with the AIDS program of Hospice and speaks to community groups -- when he feels up to it. He used to dance for hours; now he has to be careful that his daytime activities don't wear him out.

Cullipher takes his medication faithfully, pulling his pills out of the Samsonite briefcase that has always held the important stuff in his life. But he has rejected the monastic regimens that so many of his friends followed. He still smokes Salem Lights. He still has an occasional cocktail.

"I haven't seen people survive any longer for not smoking or drinking or eating sugar," he says. "I know my time is limited, but having a little fun is important."

So is having a reason for going on. Until last July, someone had to take care of Ed, who was dying of melanoma. Someone had to feed him, get him to the doctor, take him on that Windjammer cruise to the Caribbean he'd always dreamed of. Someone had to make sure he felt loved.

"Now I have to refocus, to find a new purpose," Cullipher says wearily.

David Blum is a missionary of hope.

Blum's family still isn't sure how to react to the 32-year-old's survival. They prepared themselves for the worst in July 1986, when Blum called home to tell his mother he had AIDS. They began grieving in 1987, when his doctor told the young New York City executive he'd be dead by Christmas. They started to mourn that winter, when Blum fell into a coma.

"Every time they see me, they treat me as if it were the last time," he says with his customary laugh.

"My family thinks this -- my life -- is a freakish situation."

Blum had been on the fast track all his life. A freshman at Cornell before his 17th birthday, he went right from college to the career ladder at General Electric.

"I wanted success as fast as I could get it," he recalls. "Material things were important to me: a BMW, the best apartment in Manhattan, the best home on Fire Island, the best clothes and a limousine to take me to fancy lunches."

These days Blum lives in Coral Gables and drives a brown Cadillac. When he can drive, that is. Now, instead of helping to run corporate America, he spends his days trying to make sense out of insurance regulations, trying to find a way to make the balloon payment on his house, trying to cram another White Castle hamburger into his shrunken stomach.

Blum nearly died again in July and is now trying to recuperate from a long hospital stay and near-lethal doses of radiation.

"Surviving AIDS is a full-time job," he says, seated at a table stacked with the notes and papers that are his life. Blum jokes impishly about his ailments and appetite. "This is my job now."

For Blum, success now means waking up in the morning without so much pain in his feet that he needs assistance. Success is tolerating long regimes of toxic drugs. Success is surviving until November, when his sister will give birth.

Blum credits his success to a new well of strength he discovered when he came out of the coma expected to bring his death. Never a religious man, he found a spiritual dimension in his life. He rejected the notion of luck. He turned to God and Jesus Christ.

"AIDS has enriched my life," he says. "It's taught me a lot about living. I don't want it to teach me about dying."

These days Blum grapples with the responsibility of continued survival.

"Today I heard about a 12-year-old born with HIV who just died," he says, sobbing softly. "I can't imagine spending my whole life living with HIV. Yet there are children being born all over the world with the virus and there's no cure.

"What can I do? What should I do?

"Hope. People need hope. I'm not sure, but I think that's the message I am meant to send. I want to be a symbol of hope."

Michael Callen still remembers the precise moment he rejected what he calls "the propaganda of hopelessness that surrounds AIDS."

A 6-year-old asked Callen's lover whether Callen was dead yet.

"I realized that the one essential fact about AIDS, so simple even a 6-year-old could grasp it, is that everyone who gets the disease dies.

"I did a quick reality check. I'd had AIDS for five years, but so far as I could tell, I wasn't dead."

That was four years ago. Callen is still alive and on tour with his singing group, a gay male a capella ensemble called the Flirtations.

Callen, 36, is the nation's most prominent long-term survivor. He has spent years looking for others like himself, searching for a pattern to help the tens of thousands of newly diagnosed.

His quest turned into a book: Surviving AIDS (Harper Collins, 1990). But it provided him with few answers -- despite dozens of interviews with survivors, all of whom had lived at least three years from diagnoses.

The survivors he met were male and female, black, white and Hispanic. Some were gay, some are straight. A few were even intravenous drug users. Some, like Blum, were deeply religious; others hated God. Many, like Callen, believed AZT is poison; others took the drug. A few had become vegetarians. Others, like Callen, were addicted to sugar.

Callen's refusal to buy the notion that he is a walking time bomb has made him a hero among the nation's AIDS patients. His book has sold almost 13,000 copies and is due out in paperback in November. He has traveled from Malibu to Munich delivering his lecture against despair. He shows up on Good Morning America and Geraldo. This year he was the grand marshal of New York City's Gay Pride Day parade. He receives hundreds of phone calls from all over the world begging for help, for advice, for a share of his miracle.

But he is not a popular man.

"People need myths and I have become a myth. But a lot of people are uncomfortable with my survival. They like the idea of someone beating the disease, but they have a hard time dealing with the reality.

"The lovers of men who have died look at me as if to say: 'Why him and not you? Why are you with me instead of him?"'

Callen recently left AIDS activism for an intensive self-designed course in grieving.

"I have never grieved and now I believe that the grief and sadness are so intense that I've got to be incredibly careful to let the steam blow off at a natural rate."

Callen began by making a list of everyone he has ever known who has died of AIDS. "The list is at 116 now, but every time you think it's complete, you hear a song on the radio and another name pops up."

Soon, he plans to go back through the names to remember the good times, to imagine who his friends might have become, had they lived.

"The ultimate goal is for me to grieve for myself. I've had a strange strategy of survival: to live as if I don't have AIDS while being one of the most public people with AIDS in the country. That's too much of a paradox.

"I have to grieve for my lost years."

This is a season of anniversaries for Jim Pruitt.

Ten years ago, a stranger knocked on the door of his Fire Island summer house sounding the first alarm about a new gay cancer. One year ago his friend Gregory died. Five years ago, he was told he had AIDS.

While his friends fuss over his anniversary party, Pruitt recites his litany of loss.

First it was Howard, who passed away in February 1980 from what seemed some bizarre African cancer.

Then came Anthony -- crazy Anthony -- who nobody took seriously in the summer of 1981 when he began complaining about nausea and lymph nodes.

That winter, it hit Robin's lover Bob, who came down with chronic diarrhea. Next came Charles, with a tumor under his chin. He was dead before summer 1983.

Then Paul and Daniel and Roman.

"Michael was diagnosed with KS a year after we began law school. He got asthma. He got pneumonia. Then he died. Boom, boom, boom. I was astonished.

"It's like this: Why me? Gregory, Donald and I all went to law school together. We lived together in the Village. Donald is gone. Gregory is gone. Gary is gone. That's just from law school.

"Federico moved to Miami the same day we did. He went to school to get an MBA, graduated and started working. He's gone, too.

"There's so much guilt from all this megaloss. I feel very weird about still being here.

"I feel like an icon of a dying tribe."

ANDREW INNERARITY/Miami Herald Staff

MYSTERY: Lawyer Jim Pruitt credits companion Kevin Chan, but doctors don't know why Pruitt outlived most patients diagnosed in 1986.

PRODUCTIVE: Jon Cullipher, retired bank accountant who now volunteers for an AIDS program, has survived with AIDS for six years.

CAPTION: PHOTO lawyer Jim Pruitt with Kevin Chan, Jon Cullipher (AIDS); photo: David Blum, Michael Callen (AIDS)
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