Long-term survivors defy the odds

Posted on 08 Jun 2006 at 8:04pm
By By Lisa Less – Associated Press

A patient and a physician recall the hard fought battle against AIDS during epidemic’s early days

In those days, a diagnosis was a death sentence. No one knew how you got it, this mysterious ailment that savaged the human body with almost medieval cruelty.

Baffled doctors threw everything they had at skin cancers, brain infections, intestinal parasites and other horrific manifestations. Nothing worked.
Twenty-five years after federal health officials first recognized the disease that would become known as Acquired Immune Deficiency Syndrome, AIDS no longer is synonymous with terminal illness. But like other wars, the early years of the AIDS epidemic produced survivors, people whose lives bear the contours of having crossed so malignant an enemy. Lonnie Payne and Lisa Capaldini are two of them.

Lonnie Payne moved from Chicago to San Francisco with his lover, Joel Swandby, in 1981, when the city was “the gay Mecca of the United States.” Payne and Swandby reveled in the freedom of living in a place where men could love other men with abandon.

Although Payne remembers hearing about a strange illness that surfaced in the gay community that year, it took time before “the rumor started getting longer” and reality set in. Once-beautiful men walked the predominantly gay Castro District like living skeletons, their sunken cheeks bearing the telltale lesions of Kaposi’s sarcoma.

Not long after HIV tests became available, Payne, Swandby, Payne’s twin brother, Lawrence, and the brother’s partner, Timothy Bollinger, decided to get tested together, “as a family.”

“In those days, there was this fear of being identified, so I remember not even using our real names.” All four men tested positive.

“In ’86, that was a death sentence. We didn’t know how long we had to live,” he said.

“On one level we were like, “‘OK, we have this bug. We are going to do the right things and stay healthy.’ On the other hand, there was this fatalistic effect happening, where it was like, “‘If I’m going to die, why should I worry about following some regimen?’”

The signs surfaced soon enough. Infection after infection broke through the men’s weakened immune systems, and the drugs they were taking had debilitating side effects. Those years are a blur for Payne, who was taking care of Joel while coping with his own illness.

In 1994, Lawrence Payne died, followed by Bollinger in 1995. Swandby succumbed in 1996.

“It’s hard to think back through that darkness for me at times,” Payne said. “I never thought I would be in a world without my twin brother Everything I knew that was comfort was eroding.”

For reasons that remain a mystery, Lonnie Payne stayed strong long enough to benefit from a new class of drugs that hit the market around the time Swandby died. He thinks he’d be dead, too, were it not for the protease inhibitors that ushered in the era of so-called “cocktails.”

“They were horrible and they were nasty. The side effects were everything you have ever heard the diarrhea, the neuropathy,” Payne said. “But for me, the reality is that they were working, and it changed my outlook on life.

“I started with an attitude of, “‘I will try to see if I can make these drugs work because I’m really not ready to check out yet. There’s a reason why I’m alive and the other guys aren’t, and I just need to find out what it is.”

Another decade has passed. To look at Payne, one would never know how sick he was. He retired in 1996 from his marketing job with a telephone company and volunteers as a director for two AIDS organizations. He is 53 years old when he never expected to see 40.

“I love the fact that we consider ourselves long-term survivors of AIDS and not people living with HIV and AIDS,” he said. “Because we are survivors whatever has come up we have navigated through it, sometimes with great success and sometimes with just passable success.”

In her solo medical practice in the Castro District, Lisa Capaldini sees a lot of HIV patients. She once treated Lonnie Payne’s late brother and partner.

Some suffer from a sense of spiritual ennui she calls the “Lazarus Phenomenon,” after the figure whom Jesus brought back from the dead in the biblical story. Well enough to know their limitations but too sick to work full-time, they are the epidemic’s walking wounded, Capaldini said.

“They are a little bit lost souls,” she said. “They may have sold a business or never finished school because they didn’t think they would be around. Now what they are dealing with is, “‘I may live another 20 or 30 years. What does surviving this mean?”‘

Capaldini first encountered HIV on a medical school fellowship in 1981. Her first AIDS patient was an intravenous drug user who was going blind from the disease. She remembers her tears of impotence when she sent him home to die.

San Francisco General was one of the first hospitals to have a dedicated AIDS ward, and as a lesbian herself, she gravitated to the epidemic that was hitting gay men. Even as a new doctor, she became a nationally recognized expert in treating an illness with which no one was experienced.

These days, the type of care she provides is different. A decade ago, her waiting room was full of people getting ready to die.”I have more patients with HIV in my practice than I ever have, but I am spending less time with them than I ever have,” she said. The challenge today is not to get complacent about HIV, she said. Patients must adhere closely to their drug regimens to avoid developing an immunity. That can be difficult.

While Capaldini thinks the early years of the epidemic helped “humanize” gay men in America, HIV still carries a stigma, especially for heterosexual women.
“If you are a woman and you have HIV in 2006, you are either a slut or a druggy. People want to know how you got it,” she said. “Having HIV remains a stigmatizing thing. It’s not ever going to be a chronic condition like emphysema or diabetes.”

June 5 was the 25th anniversary of the publication of the first article about the mysterious ailment that would become known as AIDS. Dallas Voice plans special coverage of 25 years of AIDS in two consecutive issues beginning June 30.

This article appeared in the Dallas Voice print edition, June 09, 2006.

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