Mark Feldman had the world on a string.
He was young, gregarious and smart. As director of admissions at New College, his career was on the ascent. As a co-director of publicity for Congregation Sha’ar Zahav, a largely gay and lesbian San Francisco synagogue, he was an emerging leader in the local Jewish and gay communities.
So synagogue colleagues were dumbstruck when Feldman announced at a board meeting he had come down with the “gay disease.”
The year was 1983. The term AIDS had not yet become widely known. And no one then fully understood what had descended so lethally on the gay community. But Feldman knew he was facing a grave illness, and when he succumbed a short time later at age 31, he became the first Sha’ar Zahav congregant to die of AIDS.
Sadly, he was not the last. The names of nearly 80 other congregants felled by the virus adorn the synagogue’s memorial wall today.
This week, Sha’ar Zahav members — and the world — mark the 25th anniversary since the first reference to a strange fatal illness affecting mostly gay men came out in the Centers for Disease Control and Prevention’s Morbidity and Mortality weekly report.
Since that report, more than 22 million people have died of HIV/AIDS worldwide. Millions remain infected, and though new drug therapies can control the disease, there is little hope for a cure anytime soon.
Though scientists isolated a form of human immunodeficiency virus in 1959, it wasn’t until 1978 that doctors began to notice gay men in Sweden had come down with a strange collection of symptoms — from virulent pneumonias to rare forms of cancer — that would ultimately prove to be markers of HIV infection. By 1980, reported deaths in the United States reached 31. Two years later, the figure was 853. By 1983, the annual death toll had climbed to 2,304.
At first, because no one understood the disease, fear was a driving factor. Some San Francisco bus drivers wore masks on their routes. When a local TV station interviewed AIDS patient Bobbi Campbell, he was placed in a soundproof room so the crew wouldn’t have to touch him.
With its large gay population, San Francisco quickly became the eye of the HIV/AIDS hurricane. Within the local Jewish community, Sha’ar Zahav took the brunt of the impact.
“It was like living through a war,” remembers longtime congregant Sharyn Saslafsky. “Our world went upside down and inside out. So many of our friends died young.”
“I remember the devastation of hearing the names on the Kaddish list of young people,” says Rabbi Eric Weiss, a Sha’ar Zahav member and executive director of the Bay Area Jewish Healing Center (the Institute on Aging). “During the service, everyone stands, links arms and sings ‘Hinei Mah Tov.’ I remember the utter sadness when there were people we couldn’t put our arms around anymore.”
In the early years of the AIDS epidemic, long before the advent of the drug AZT, protease inhibitors and other treatments, Sha’ar Zahav found ways to cope. “We came together as a community and as a synagogue,” adds Saslafsky. “We had nothing to lead us through this, but we knew we had to do something.”
Rabbi Allen Bennett served as Sha’ar Zahav’s spiritual leader during the first years of the AIDS epidemic. Today he is the rabbi of Alameda’s Temple Israel, but he remembers the emergency-room atmosphere of those early days, especially regarding his pastoral duties.
“You were on call 24/7,” he says. “There was no easing up. Every day there were more casualties and, as things progressed, more fatalities. Until things started to taper off, I and an awful lot of my friends were losing, on average, a friend or acquaintance once a week for probably five years.”
Former Sha’ar Zahav Rabbi Yoel Kahn joined the congregation in 1985, his first post after ordination. But nothing in rabbinical school prepared him for the devastation he encountered upon arrival. “The model we work with is that things are timely. But one dimension [of the AIDS crisis] was the untimeliness of it, cutting down people in their prime, as well as the sheer magnitude of it,” he says.
At High Holy Days, he found himself unable to utter out loud the U’netaneh Tokef prayer, which reads in part, “On Yom Kippur it is sealed … who shall live and who shall die … who by earthquake and who by plague.”
“It was emotionally and spiritually draining,” remembers Kahn of those years. “But the value and holiness of gay relationships was so affirmed for me by the faithfulness in care-giving I saw.”
The congregation mobilized on two tracks: in-house and communitywide. For ailing congregants, the “Phooey on AIDS” fund was established, which provided financial assistance for those in need. One member organized a drive to get cushions installed on sanctuary pews because the hard wood caused discomfort for ailing AIDS patients.
“We were the essence of bikur cholim [visiting the sick],” says Saslafsky, “being there for each other for food, for support, for community. We started a woman’s blood drive because it became clear that gay men could not give blood.”
Women, including the women of Sha’ar Zahav, did play pivotal care-giving roles in those days, with the synagogue’s bikur cholim committee chair Batia Kalis one of the most active volunteers.
As the magnitude of the AIDS crisis became clear, Sha’ar Zahav members strived to reach out beyond the borders of their own community. For years, the monthly “Kaiser Brunch” brought lox, bagels, fresh orange juice and simple human companionship to the AIDS floor at Kaiser Permanente Hospital in San Francisco. They even took along a string quartet most months.
“There were so many people that were alone,” says Sha’ar Zahav member Alan Berenstein, one of the founders of the Kaiser Brunch. “Families and friends especially distanced themselves from people with AIDS. But we had community. We had our congregation. For me [the brunch] was something I had to do. It was something more than just writing a check to some agency.”
The brunch tradition lasted for several years, until the standard of AIDS treatment shifted from hospital to home care.
When it came to HIV/AIDS, “we were the address for the Jewish community,” says Kahn, “so both rabbis and others affected would call us for help. Unaffiliated Jews with AIDS would sometimes show up at our door, and we got a lot of calls from hospitals.”
Sha’ar Zahav founding member and former temple president Daniel Chesir served on the AIDS advisory board of Jewish Family and Children’s Services in the 1980s. He is proud of what Sha’ar Zahav did to respond to the AIDS crisis, but is quick to point out that his congregation wasn’t the only one active in AIDS outreach.
“The Chicken Soupers [of San Francisco’s Congregation Beth Sholom] delivered chicken soup and Jewish soul food to patients who were clients of JFCS,” he says. “It was a Jewish version of Meals on Wheels.”
Groups like ACT-UP and the San Francisco AIDS Foundation eventually galvanized the region and the nation in terms of AIDS awareness. But locally, Bay Area activists remember JFCS as one of the more heroic organizations. Today Avi Rose is the executive director of JFCS in the East Bay, but in 1985 he was in charge of the AIDS project for JFCS in San Francisco.
“It was at a time when a lot of people were sick, infected and frightened,” he recalls. “There were some treatment options, but most people were not living very long. We were really the first Jewish community to take this on full time in terms of delivering direct services to Jews with AIDS, doing education and prevention work, and mobilizing the Jewish community.”
One of the steps Rose took was to put a human face on HIV/AIDS. “I brought Jewish people with AIDS to most of the synagogues,” he remembers, “and that had the biggest impact. Having it personalized, having someone people could identify with, made people more sensitive.”
Some national leaders in the Jewish community took action, among them the Reform movement’s Union of American Hebrew Congregations. The UAHC had its own AIDS committee coordinating with congregations nationwide, including Sha’ar Zahav. At a 1989 biennial in New Orleans, a painting of a tallit symbolizing the Jewish commitment to fighting AIDS was unveiled. A poster of the artwork was later sent to Reform congregations around the country.
The precise number of Sha’ar Zahav congregants claimed by AIDS is understandably hard to tally. At the height of the crisis, many men and some women joined the synagogue only weeks or months before their deaths. Some who died were partners of members, but who received the same caring treatment, both in life and in death.
Those who mobilized to help AIDS patients remember the crushing chronic sadness, as well as a strong will to persevere. “There’s a certain amount of energy and adrenalin that kept propelling you forward,” recalls Rose. “I was surrounded by it. We had a strong sense of mission.”
Adds Weiss, “I held my best friend’s hand when he died, and by the time I hit 40 I had outlived most of my friends. But out of this experience, I became part of the first cadre of gay and lesbian hospice volunteers.”
Sha’ar Zahav’s current rabbi, Camille Shira Angel, arrived at the congregation in 2000, after the AIDS crisis in San Francisco had receded somewhat. But the specter of the disaster remains to this day.
“Our community has been profoundly transformed,” she says. “Not a day goes by that our members don’t feel the loss. But I’m thinking about the 11th commandment: to maintain hope and believe in miracles. For Jews, hope is an obligation.”
Angel instituted a Yizkor service for the congregation’s AIDS dead, and at the annual congregational meeting, time is set aside to remember them. “We have a responsibility to keep alive the men and women who were lost,” she says. “We tell their stories and say Kaddish for them.”
Yet even in the wake of such tragedy, life goes on, and nowhere more so than at Congregation Sha’ar Zahav. The special monthly healing service, which was so integral to congregational life during the height of the epidemic, has now been phased out.
Indeed, Sha’ar Zahav has lost no member to AIDS in several years. “I don’t know anyone who is dying of AIDS,” says Chesir. “They’re on antiviral drugs, and they’re surviving. It’s not something we even think about in terms of synagogue activity.”
And after a period where so many died, who would have predicted that so many would be born?
“There were two things we couldn’t foresee when we founded Sha’ar Zahav,” adds Chesir. “One was horrible, and one was wonderful. The horrible thing was AIDS. The wonderful thing was that we’d have children. We have more than 150 children now.” Angel officiates at eight to 10 brit milahs and baby-naming ceremonies each year.
HIV/AIDS remains a planetary pandemic. Last year, more than 40 million people were infected worldwide, only a fraction of which have access to lifesaving drugs. And despite advances in medicine and AIDS education, the Global Health Council reports that only one in 10 persons infected with HIV worldwide even knows of their HIV status.
“It is one of the worst-kept secrets in the medical world that 30 percent of sub-Saharan Africa will die of AIDS in the next 20 years,” notes Bennett.
Even in the United States, where affluent and insured HIV patients have access to top-quality treatment, there are many — the poor, the uninsured, the indigent, the drug addicted — for whom an HIV diagnosis is a virtual death sentence. Half a million have already died in this country, and 40,000 are newly infected every year.
At least in the Bay Area, where AIDS once laid waste to a generation, the worst appears to be over. And even some good came of the experience. Says Weiss of the gay community response to AIDS, “It galvanized GLBT activism on the level of public policy and government funding, and provided a model that has been duplicated by others throughout the world. Ribbons and walks are part of the model the GLBT community created.”
Yet the memory of what happened at Sha’ar Zahav, across the Bay Area and around the country during that dark time will never be erased. “Whenever I am at Sha’ar Zahav, I always stand for the Yizkor of people I buried,” says Kahn, who is now an associate director at the Jewish Community Center of San Francisco. “It’s my responsibility to say Kaddish.”
And as Angel walks the halls of her synagogue, she cannot help but pause at that long line of memorial plaques and boards, one of which includes the name of Mark Feldman.
“To be in a sacred space, surrounded by the spirits of those who once dwelled amongst us,” she says, “there is a commitment to thrive as out, gay, proud, integrated Jews. That’s their legacy to us.”