AIDS at 30: Fire Islanders Remember Those Lost

On a rainy Saturday afternoon earlier this month, Susan and Ruth Freedner pulled out playbills from various Arts Project of Cherry Grove shows and Congregation B'Nai Olam's Book of Remembrance. The Cherry Grove women began to point out to this reporter the names of dozens of friends and other local residents who succumbed to AIDS.

"It was like one moment they were here, the next moment they weren't," said Susan Freedner. "It was very, very hard."

The Centers for Disease Control reported the first cases of what became known as AIDS on June 5, 1981. The New York Times reported on July 3, 1981, that 41 gay men in New York City and San Francisco had developed Kaposi's sarcoma, a rare and usually fatal form of cancer.

The AIDS epidemic struck both the Pines and the Grove early and disproportionately hard. Randy Schultz chronicled the epidemic's devastating impact on the beach and elsewhere in his 1987 book "And the Band Played On: People, Politics and the AIDS Epidemic." Ron Martin, former president of the Fire Island Pines Property Owners Association, was among the Fire Islanders who recalled the epidemic's devastating impact on the beach in a series of recent interviews with The News.

"So much of the character of the Pines as an emerging gay community during the 1970s came to a halt in the early part of the next decade as more and more residents died from a mysterious disease that in the beginning was difficult to diagnose," he said. "So many of our residents during that sad decade were consumed by the need to care for the sick and dying and we became almost numb from the number of funerals and memorial services we attended or helped plan."

Martin, who has summered in the Pines since 1971, noted 10 friends who had one time lived with him lost their battle to AIDS. Pines resident Scott Bromley started to keep a date book that began on Jan. 1. "I started to write the name of someone who had died of AIDS and within two or three years it was 30 in January, 30 in February, 30 in March-that's a lot of people," he told The News. "I was flabbergasted."

On the other side of the Carrington Tract, the epidemic's toll became equally as grim.

Panzi lost seven members of her Grove household to AIDS-many of their ashes were scattered in Strawberry Hill's backyard. "Being very involved in many gay community events on and off the island, the number of friends and colleagues that died was staggering," she said. "It was very traumatic from the time people were diagnosed, but [also] to their death or their survival."

Panzi said the Grove was in "complete denial" of AIDS in the early years of the epidemic, but a few unsung heroes had already emerged by 1982. Mary Kapsalis, who was known as Mary the Barber, would care for those men who became sick. She walked their dogs, changed their bed sheets, did their shopping or even trimmed their beards. Amelia Migliaccio also brought these men food from her Grove restaurant.

"These guys were living out here," recalled Ruth Freedner, noting many of them lost their jobs and had no other place to go once they started to get sick.

Larry Kramer was among those who collected money for what was then-called the Gay Cancer Fund in the Pines and the Grove in the summer of 1981. He was among the six men who founded Gay Men's Health Crisis a few months later, although Kramer later left the organization and founded ACT-UP (or AIDS Coalition to Unleash Power).

John Whyte created From the Pines With Love, which produced events that contributed to God's Love We Deliver, an organization that delivers meals to people with HIV/AIDS and later to those other serious illnesses. Bailey House and Miracle House also have their roots on the beach. "We would [seek out] every little thing we could to find out more," noted Susan Freedner, stressing people were desperate for any information that could help them better understand the virus that was devastating their communities. "Every single aspect had to be addressed."

"It Was Frightening"

A sense of resignation had set in by 1990.

"It was frightening," said Bromley. "I've been living with it for so long, I just pushed it away. It was just not pleasant. It was very difficult. You were going to a memorial every other day. It was just rotten, just not good."

AIDS had already devastated the Grove when Phil Stoehr began to rent in the hamlet in 1987. This scene was a far cry from the one he found when he first came out to Fire Island on weekends in the mid-1970s-Stoehr noted tea dance at the Ice Palace was packed every afternoon. "That was before AIDS completely changed the picture of being gay in New York City," he said as he discussed how the epidemic had changed everything in less than a decade. "Every week you heard somebody else was ill or somebody else had died."

Three months after his first partner suddenly passed away from a cerebral hemorrhage on the beach, Stoehr tested positive for AIDS. He had lost 15 pounds in the two weeks after his partner's sudden death and developed a sinus infection of which he could not get rid. Stoehr began a regimen of the anti-retroviral AZT.

"In many ways, I was lucky that I started treatment early on," he noted, describing the anemia, lethargy and other serious side effects the drug had. "It was basically taking poison. It was devastating to your body. For the first time in my life, I felt sick."

Out of Sadness Comes Hope

Amid the sadness of the 1980s and 1990s, there were some bright spots that afforded Grove and Pines residents a temporary respite to the epidemic.

The Invasion became the one day of the year where people could "let loose." Panzi rejected criticism over her decision to continue the annual spectacle at a time when so many Fire Islanders had succumbed to the virus. Others suggested that the Invasion should have become a fundraiser for GMHC.

"It's just a day we can go out and hug each other, go have a drink and go dancing," said Panzi, noting some Invasion participants scattered their friends' and lovers' ashes from the top of the ferry. "When the Invasion was happening, people with HIV and AIDS were still wearing dresses and partying. It was a celebration of life."

Both the Freedners and Martin pointed out the fight against AIDS sparked a newfound sense of community among gay and lesbian Fire Islanders who took it upon themselves to take care of their own.

"We developed a new sense of charity that endures today," said Martin, noting GMHC's Morning Party, the Pines Party, the Fire Island Dance Festival and other events that have raised millions of dollars for HIV/AIDS service organizations and other charities. Martin was co-chair of GMHC's Board of Directors from 2003 to 2005. Susan Freedner added the creation of the Concerned Women of the Grove is another manifestation of this spirit.

"We knew as a community we could cohesively do what one person couldn't do," she said.

Words of Wisdom

As Fire Islanders mark the 30th anniversary of the first reported cases of what became known as AIDS, they also reflected upon the last three decades.

"For me, I still have a sense I can't believe I'm alive today," said Panzi, noting she still has a sense of survivors' guilt and anger towards the Reagan administration's failure to adequately respond to AIDS. "I'm just happy to be here and I'm happy Phil's [Stoehr] here and other people who survived. If the government had acted a little sooner, some of them would still be here. They didn't have to die."

News columnist Bruce-Michael Gelbert's partner Jo passed away from AIDS in Jan. 1993. He himself tested positive in late 1992. Gelbert, who is Mr. Fire Island Leather 2001, wears a red ribbon on his vest. "I am surviving and thriving being positive," he said, noting things have improved for people with HIV/AIDS because of improved anti-retroviral drugs and less stigma against those who continue to live with the virus.

Stoehr expressed a similar gratitude. "I'm not sure what Cherry Grove is going to be like in the future, but I intend to be here to see how it works out," he said.

Younger gay Fire Islanders also acknowledged the somber milestone.

Danny Logan, 25, who performs at the Ice Palace and at other venues in New York City as Dallas Dubois, has lived with HIV for the last couple of years. He appeared in a February episode of ABC's "What Would You Do?" that focused on HIV/AIDS-based discrimination. Logan told The News that one of the actors who appeared in the segment with him refused to shake his hand after he learned his status.

"I felt I was isolated-like we were back in 1983," he said, noting he could see the Manhattan skyline from the New Jersey diner at which the segment was shot.

Logan said he feels it is important for those who live with HIV/AIDS to come out about their status because it further breaks down barriers for people with the virus.

After a brief pause, he pointed out the sound of rustling leaves between the Grove and the Pines reminds him of the "amazing spirits that were left behind."