Survivor’s Syndrome : AIDS Takes Toll on Ones Left Behind

Three years ago, after he had watched his five best friends die of AIDS, interior designer David Ramey fled his native San Francisco to begin a new life across the bay in Walnut Creek.

“I moved to the suburbs and became a hermit,” said Ramey, who still cannot drive across the San Francisco-Oakland Bay Bridge without twinges of pain.

For Ramey, as for many other gay men whose closest friends and acquaintances have been blinded, disfigured, demented and killed by AIDS, the anguish he feels at the loss of loved ones has been augmented by paradoxical feelings of guilt that he has escaped the epidemic. Ramey has been determined to be free of the human immunodeficiency virus that causes AIDS. If he avoids high-risk behavior, Ramey can be expected to evade the disease.

‘Secondary Epidemic’

But he is part of what Dr. John L. Martin of Columbia University’s School of Public Health in New York calls “a secondary epidemic of AIDS-related bereavement.” He suffers from what psychiatrists and psychologists call survivor’s syndrome.

Experts say the most common symptoms of survivor’s syndrome include guilt--caused by a person’s unconscious sense that his survival was purchased at the cost of another’s--as well as depression and “psychic numbing.” Some sufferers report nightmares, sleep disturbances and intrusive thoughts. Others lie or fudge about their good fortune to show solidarity with sick and infected friends.

“As antibody-negative gay men, we have our own sets of fears,” said Andy Rose, a San Francisco social worker. These include fears “about losing our friends, about being caretakers over and over again, about whether we have the strength for it.”

“Whenever I go to a funeral, I think, ‘There but for the grace of God go I,’ ” said Brian Hurst, 33, a writer in North Hollywood.

Larry Kramer, a playwright and AIDS activist, summarized the feeling in a Gay Pride Day speech two years ago in Boston: “Don’t you ask yourself quite often the big question: ‘Why am I still alive? At some point I did something the others did. How have I escaped?’ ”

Kramer was exhorting his listeners to political action. But politics--from the civil disobedience of street activists to the quiet lobbying of such pinstriped organizations as the Human Rights Campaign Fund--is just one of the coping mechanisms for those who view themselves as survivors.

Some--notably artists, writers and journalists--bear witness. Others devote themselves to the sick and the dying, or work through their grief by making panels for the Names Project AIDS Memorial Quilt. Some affirm life, pairing up with lovers, having children and raising families.

In San Francisco, Ramey has joined a newly formed support group for HIV-negative gay men, who work through the guilt and the grief, the hope and the despair that have invaded their lives.

Survivor’s syndrome is not limited to gay men who have tested negative. Health care workers, lesbians, gay men who do not know their antibody status, gay men who have tested positive, and even people who have survived several years after an AIDS diagnosis, often must grapple with similar issues.

Still, AIDS experts and mental health professionals say survivor’s syndrome is etched most sharply in the psyches of gay men who have learned that they are free of the virus. Unlike many who test positive, they do not see themselves as ticking time bombs. By and large, these men are practicing safe sex, and most know that they will remain uninfected.

“Grieving issues appear to be more sustained among HIV-negative gay men than among positives,” said John Acevedo, a psychologist who works with the AIDS Health Project in San Francisco.

“There isn’t a force pushing negatives to say: ‘This is the reality of my life. Now, how do I want to spend the rest of my life?’ Their grief seems open-ended. I don’t see the focus on quality of life that I see in my HIV-positive patients.”

Many Withdraw

Acevedo said that many of the HIV-negative patients he counsels have withdrawn socially or sexually. “In their attempt to avoid more pain, and in some cases to avoid infection, they isolate. They shut down completely,” he said.

For such people, “the subconscious mind’s irrational sense of guilt is telling them that they do not deserve to enjoy life when others around them suffer and die,” said Dr. James Titchener, an authority on survivor’s syndrome at the University of Cincinnati.

They suffer a sense of isolation, even though they remain in the majority. The U.S. Centers for Disease Control estimates that, nationwide, only 20% to 25% of exclusively homosexual men are infected with the virus. The figure is higher in the hard-hit cities of Los Angeles, New York and especially San Francisco, where estimates range up to 50%.

Dr. Robert Jay Lifton, a leading authority on survivor experiences who wrote the National Book Award-winning “Death in Life: Survivors of Hiroshima,” says, “The parallels between gay men who have escaped AIDS and survivors of Hiroshima and the Holocaust are striking.”

One 61-year-old Auschwitz survivor in San Francisco said he was recently treated for depression by a psychiatrist because AIDS had “brought up many of the issues from the camp.” The man, who is gay and has tested negative for HIV, said the episode was triggered by seeing gaunt and hollow-eyed AIDS patients.

“In the camp, we used to call it ‘the look,’ ” he said.

Still, survivor’s syndrome can also lead to “very constructive adaptations,” Titchener said.

Lifton agreed, citing “Jewish concentration camp survivors who struggled to create the state of Israel, or Hiroshima survivors who started the peace movement.”

Consider Robert Bray, who quit a $50,000-a-year job at IBM in Washington to become director of communications for the Human Rights Campaign Fund, a political action committee that is battling AIDS and fighting discrimination against gays.

“Somehow, AIDS passed over me,” said Bray, 32, who tested negative for the virus. “I feel compelled to use my professional skills to make it easier for those who will die, and to prevent others from getting sick.”

Kim Schmidling, an office manager for an engineering firm in San Francisco, tested negative for the virus in 1987 around the time that three close friends were dying. One of the friends had been abandoned by his family, and Schmidling sat by his friend’s bedside for weeks as he died.

“Just as he was leaving, I made a promise to him, to myself and to God to do anything I could to end this epidemic,” Schmidling recalled. When he learned a few months later that the National Institutes of Health in Bethesda, Md., needed uninfected gay volunteers to inject with an experimental AIDS vaccine, he signed up.

For the past year, Schmidling has used up all his vacation time flying to and from Bethesda, sometimes once a week, for injections and blood work. In addition, he spends his weekends volunteering as a cook at a local hospice.

Other gay survivors are driven to confront society with the magnitude of the catastrophe that has befallen their community. “There is nothing else important to write about,” said Kramer in his new book, “Reports From the Holocaust: the Making of an AIDS Activist.”

In the book’s main essay, Kramer cited a passage from the work of Auschwitz survivor Primo Levi: “The need to tell our story to ‘the rest,’ to make ‘the rest’ participate in it, has taken on for us . . . the character of an immediate violent impulse, to the point of competing with other elementary needs.”

Feel Need to Work

San Francisco historian Alan Berube, who is HIV-negative, has also become more politically active as a result of the epidemic. Still, he said, “for me to believe that ‘God spared me’ for a reason, or a mission, would be the height of egotism. It would suggest that those who were not spared were somehow less worthy.”

For whatever reason, many who test negative say they feel a special responsibility to speed an end to the epidemic. “You go through a period where all you want to do is work, all you want to do is have an impact,” said Mark Cloutier, who abandoned a promising career at the Transamerica insurance company to become a legislative aide specializing in AIDS issues for Rep. Barbara Boxer (D-San Francisco).

Cloutier, who has tested negative but has lost a former lover and many close friends to AIDS, has scaled back his 12-hour-a-day work schedule, “but I still feel guilty when I miss a community meeting or a fund-raiser.”

Such devotion to the job is common. “Whenever I feel like I’m burning out,” said Bray of the Human Rights Campaign Fund, “all I have to do is open up the Bay Area Reporter.” The gay newspaper’s obituary pages are filled with pictures of men who have died and advertisements for funeral parlors and crematories.

Mental health professionals say the intense sense of solidarity among gay men--whether infected or free of the virus--is a result of their common experience as outsiders. “After growing up ‘different,’ gay people take great joy in becoming part of a group,” said Dr. Stephen Morin of San Francisco.

“Now this bond of closeness that we share is being ruptured by the pernicious nature of this epidemic, which is dividing us in the cruelest way imaginable,” Morin added.

Perhaps that is why many gay men who test negative are “relieved, but it is a relief tinged with sadness,” said Jackie Brookman of the AIDS Health Project in San Francisco, who has personally delivered HIV antibody test results to 3,000 people.

“Sometimes they cry. They feel they aren’t any different from their friends who are dying,” she added.

To celebrate his antibody-negative status would be unseemly, said historian Berube, whose lover of four years, a British-born biochemist, died last year. “It would be like rich people celebrating around the homeless,” Berube said.

Indeed, many gay men interviewed for this article said they lie about their negative test results, especially around friends who are sick or have tested positive. One Los Angeles lawyer who had previously revealed his HIV-negative status recalls an attempt to console a friend who had just been diagnosed with AIDS. “He cut me off very bitterly and said I couldn’t possibly understand what he was going through,” he said.

Until recently, the emotional needs of HIV-negative gay men received little attention from mental health professionals. “The diseased person is always so much more compelling,” noted Dr. Thomas J. Coates, co-director of UC-San Francisco’s Center for AIDS Prevention Studies.

That appears to be changing. In recent months, the AIDS Health Project in San Francisco has launched four peer support groups, each made up of up to a dozen HIV-negative gay men.

The first such group was organized last year by Ronald D. Moskowitz, a retired newspaper reporter for the San Francisco Chronicle. In seeking help, said Moskowitz, 55, group members were fighting a common tendency among those who test negative: “the feeling that their problems are minuscule compared to those infected.”

For many, the groups provide a setting to talk openly about the practical problems that come with testing negative. “It isn’t easy talking about being negative to other gay men you meet, since they may have tested positive and consider your remarks as bragging or elitist,” Moskowitz said.

Some people also worry about becoming infected despite stringent adherence to safe-sex guidelines, or even celibacy. Others cannot accept the fact that they have tested negative.

“It is hard to get it through my head that I am not infected,” said Tom Bowers, whose lover of nine years, a doctor, died of AIDS last year. “Every time I have a sneeze, or a sniffle, or wake up sweating under the comforter, I think to myself: This is it.”

And for some gay men and lesbians, surviving the epidemic has led to the ultimate affirmation of life: having children.

Cedric Yap, 32, a mortgage banker in San Francisco, and his gay lover took the test largely to determine whether one or the other could safely father a child. “Testing negative strengthened our resolve,” Yap said.

TAINTED SYRINGES--Ten more Soviet children have gotten AIDS virus, apparently from hospital syringes. Page 5