Walking Wounded : AIDS has robbed them of friends and lovers. They survive, but many want to die.

The young San Francisco man was certain he had AIDS.

He was obsessed by the thought and showed several symptoms, including dizziness and night sweats.

Because he lived in a city with one of the nation’s highest HIV infection rates, his physician, Dr. Larry Waites, took the man’s complaints seriously. But a battery of tests, including an HIV antibody test, all came back negative.

The young man was unconvinced. He traveled from doctor to doctor, undergoing more tests and becoming increasingly anxious and agitated. Despite all the medical proof to the contrary, he continued to be overwhelmed by the specter of a prolonged, agonizing death. One night, he overdosed on sleeping pills.

His suicide was an extreme example of a peculiar form of hypochondria. But as anyone who’s ever worked on an AIDS hot line will tell you, it was not unique.

One of the neglected consequences of the acquired immune deficiency syndrome epidemic is the ever-widening circle of men and women who are negative, but whose lives have been emotionally ruptured by the successive deaths of friends and loved ones from the disease. Waites calls them “the walking wounded.”

As they cope with the grief and guilt generated by multiple losses to AIDS, many have experienced chronic bouts of hypochondria, clinical depression, anxiety, insomnia, patterns of self-destructive behavior and anhedonia, an inability to derive a sense of pleasure from life. Despite these problems and the existence of support groups to cope with them, the walking wounded are largely ignored.

According to Dr. Mark Katz, an HIV specialist and a member of the Los Angeles County AIDS Commission, there is a significant other, friend or family member for each of the estimated 40,000 HIV cases in Los Angeles to date.

“Everyone is personally affected somehow,” he says. “And the people who are negative must handle feelings of vulnerability as they watch friends die.”

Consider the case of David Silver, the human resource director at Checkers Hotel in Los Angeles. He has yet to fully come to terms with the loss of both his lover and his best friend over a two-year period. He battles frequent crying jags, anxiety attacks and anti-social behavior.

“I isolate,” Silver says, noting that he goes directly home after work and refuses to pick up the phone when it rings or even listen to his messages. “I played them once and I learned that a friend had died. I don’t want to know what’s going on.”

These complex feelings have been compared to the guilt experienced by survivors of the Holocaust, to the post-traumatic stress disorder that affects those who endure natural cataclysms like earthquakes and tornadoes and to the battle fatigue syndrome experienced by soldiers.

The difference with AIDS is that the epidemic continues unabated, leaving no respite to complete the normal grieving process. “It’s like suffering post-traumatic stress but without the post,” says Los Angeles therapist Dan Alonzo.

“Grief can be a finite phenomenon. But how do you accommodate two losses at once or, after 12 years of the epidemic, the loss of an entire peer group? It’s psychologically impossible. You shut down. You numb out or become addicted to alcohol, drugs or sex.”

Simon Pastucha, a 31-year-old Los Angeles city planner, has lost his longtime companion and several close friends to AIDS. He suffers from a general lethargy, comparing it to “an open wound that’s so deep you can’t express it and people can’t comprehend it. But then how do you explain a complete loss of hope?”

Unlike most men and women his age, he has lost sight of any long-term goals. Progress for Pastucha is making it out the door in the morning. “I don’t have a five-year plan or a two-year plan. I take it month by month. I just try to do a good job.”

But as he struggles to cope with the grief and sorrow, he sees the path ahead strewn with more losses. “Three to five years from now, people who are very important to me are going to be gone,” Pastucha says with an air of almost defeated certainty.

Because of the magnitude of the AIDS crisis, little attention has been directed toward these problems. Funding and energies directed at the gravely ill are already stretched to the limit.

“Significant others are neglected,” says psychotherapist Sandra Jacoby-Klein. “Their needs are not considered important. And if you’re saying their feelings don’t count, that can be even more stressful.”

Often the walking wounded don’t believe they have a right to their feelings. They drift into Waites’ office with ailments, real or imagined, and apologize for taking up his time because they know what a heavy AIDS caseload he carries.

“You feel like the child of a Holocaust survivor,” says filmmaker Steve Levitt. “I mean, how do you turn to a lover who’s dying and say, ‘I’m depressed because my boss is giving me (grief) at work’?”

Those who have been spared take little solace in that fact. Roy Cameron, a physical trainer in San Francisco, wasn’t relieved when he tested HIV negative.

“I didn’t feel blessed or lucky,” he says. “All I felt was sadness for those who are not here.”

The problem also affects health and social services providers. Thom Mosley, a program coordinator for AIDS Project Los Angeles, lives with AIDS 24 hours a day. When he tested negative, he says, “I was ashamed. I thought, how can I empathize with my work now?”

The effect on him and other AIDS care providers, Mosley says, is akin to what is experienced by plane crash survivors. They think frequently of suicide or self-harm and often try to suppress their feelings with alcohol and drugs. It’s behavior that, as they teach on a daily basis, can lead to patterns of unsafe sex.

“People in health care can be the worst,” says Mosley. “We don’t practice what we preach. We need to investigate that dark side. But thus far we haven’t had the mechanism to do it.”

A pattern of unsafe sex among survivors may have less to do with fatalism than with feelings of institutional powerlessness, according to Peter Nardi, a sociologist at Pitzer College in Claremont. “Just as concentration camp survivors were scarred by surviving that powerful an institution,” he says, “these people feel they have no control over the medical community and other political and social institutions.”

Families would seem to provide a built-in social support system for many of those with HIV-related illnesses. But that’s not always the case.

“When someone in your family gets AIDS, the whole family gets AIDS,” says Susan Albershardt, whose brother, John, recently died. “The strain is intense. There’s great anger and confusion.”

Albershardt, who works at a major film studio, put her professional and personal life on hold when she began to care for her brother. “Recently I was in line for a promotion,” she says, “but I had to turn it down because I couldn’t handle the overtime.”

She has lost touch with friends and no longer dates, adding: “I would feel guilty putting myself out there and trying to meet someone and be happy.” Taking care of her brother consumed her, and she’s had no time to focus on the toll it’s taken on her.

“I don’t feel depressed right now, but looking back, I’ve shown all the classic symptoms,” she said shortly before her brother died. “I don’t hang out with friends or call them, because I have nothing good to talk about. I cry at the weirdest times.”

The walking wounded are not only ignored; they are sometimes shunned.

“We are the witnesses, like the Holocaust survivors, and no one wants to hear us,” says Levitt, who recently made a short film about the subject called “Deaf Heaven.” “You don’t bring up AIDS at a dinner party.”

Journalist Meredith Brody did exactly that and was stunned by the response. At a recent cocktail party in New York, she spoke with a woman who appeared to be a typical red ribbon wearer. Brody mentioned that she was battling bouts of depression because of the loss of six of her closest friends in a two-year period. The woman responded tartly: “Then you picked the wrong friends, didn’t you?”

Although the wholesale loss of peers has devastated the gay community, even there HIV negative men and women receive little counsel and often encounter open hostility.

“They are rejected by those who are HIV positive,” says therapist Ron Crane, “and they in turn reject (HIV positives) for fear of contracting HIV. There is no real dialogue.”

Because they don’t carry the virus, their problems are dismissed--as if there were no room for two distinct sets of issues. Says Nardi: “If they (HIV negatives) try to voice their own concerns, they’re considered whiners.”

Those who are HIV negative even feel out of place in organizations like ACT Up, which help focus the struggle and identify the demands of people with AIDS. Yet they shoulder many of the same burdens, including anti-gay discrimination and AIDS discrimination. Although AIDS has generated compassion for the afflicted, it has also created a stigma that anyone who is gay or an IV drug user is infected.

Even though people may not carry the HIV virus, they are not immune to contracting it, according to Paul Cosey, a facilitator at the AIDS Health Project in San Francisco.

“No one questions the millions poured into safe-sex education,” he says. “And yet, who is most at risk? The HIV-negative person. They’re suffering from more than survivor guilt. They also have survivor fear that if they’re negative and are going to remain that way, how are they going to plan the next 40 or 50 years of their lives?”

Therapists who treat HIV-negative men and women stress the need for more support groups that specifically address their problems. Yet the few groups that exist have produced mixed results.

Alonzo, for example, encountered resistance in the gay community about starting such an organization, saying “it’s not politically correct.” He succeeded in attracting only the most egregious hypochondriacs, who spent all their time comparing symptoms.

In San Francisco, the AIDS Health Project has created a few Negatives Being Positive support groups, modeled on the Positives Being Positive groups. The meetings identified “a shocking degree of isolation,” says Cosey. People who attend are “scared of AIDS, scared to make friends with someone who’ll get sick. Or frightened that they’re really infected and are just waiting for it to show up.”

Last winter, when negative support groups planned a social get-together, a firestorm erupted after the gay press labeled it “viral apartheid.” Cosey insists that the gatherings were not designed to be exclusionary, adding that HIV-positive groups had been convening socially for some time already.

Despite the controversy, there are signs of growing awareness. Earlier this year, San Francisco earmarked $100,000 to study the creation of a support program that would help HIV-negative men improve the quality of their lives as a deterrent against unsafe sex.

Sociologist Nardi says it’s important for HIV-negative men and women to be empowered and legitimized, for they are the ones who will continue to minister to the sick and dying. Moreover, the torch will be passed to them in the continuing battle against AIDS indifference and discrimination.

“Safe-sex education is not enough,” says Dr. Katz. “We must encourage them to feel grief and pain and to find things to rejoice about.”