Long-Term Survivors of HIV/AIDS Speak at Congregation Kol Ami

In observance of the 33rd annual World AIDS Day, on December 1 Congregation Kol Ami hosted six survivors of the disease, including Los Angeles City Councilman Mitch O’Farrell and West Hollywood City Councilman John D’Amico, who related the life-altering effects HIV/AIDS had on them. Their stories were dramatic, intensely personal, tragic and courageous. 

Echoing the early fears of many AIDS survivors back in the day, D’Amico believed his 1988 diagnosis doomed him. “Long before I joined the City Council, I had a history and a future that seemed to collapse into each other,” he said.

“I remember every single face [and] every single friend who was not so fortunate.” -Mitch O’Farrell

O’Farrell said that he came of age as a gay man at the beginning of the AIDS epidemic, in 1981. “Anyone who is my age knows what I am talking about when you can relate to the fact that that shaped who we are,” he said. “As we are lighting the Hanukkah candles, I remember every single face [and] every single friend who was not so fortunate.”

HIV.gov reports that 35 million people worldwide have died of HIV since 1981, and 36.7 million others are living with the disease. 

Keynote speaker Dr. Michael Gottlieb, an immunologist, was the first to identify AIDS as a new syndrome when he was a researcher at UCLA in June 1981. With remarkable precision, he described his first patients by names and traits. “If they walked through the door tonight,” he said, “I would embrace them.” 

Since his young patients had HIV before effective treatment was available, Gottlieb could not understand why they weren’t angry. “I would have been,” he said.

Congregation Kol Ami, founded by LGBTQ activist Rabbi Denise Eger, has been holding a monthly HIV support group for the entire 29 years of the synagogue’s life. “It should be of interest to the community that Jews with HIV who belong to other congregations have to come to Kol Ami for their Jewish support,” she said. 

Long-term survivor Michael Sugar, a retired production manager in the entertainment industry, also spoke at the event. He was diagnosed with HIV in 1985. “That was near the beginning of what became a pandemic,” he said. “It means people like me provided the most kind of information.” 

Sugar and others who tested HIV positive in the mid-’80s faced an imposing handicap. “For most illnesses or diseases, doctors look to the history of the disease and what has worked for different patients,” he said. “But for HIV, since there are no people who have been living with this for longer than 35 to 40 years, there is no lengthier history to look to.”

At the beginning, his doctor told him he had maybe two years to live. 

“You learn to live with what is on your plate,” he said. “You establish a certain balance. The balance gets rocky when you have something new thrown on the plate, so you establish a new way of moving forward with it. The hardest part for me was losing all of my friends. Living through something like [that was like the] Holocaust, or a war.”

Growing up in small-town Pennsylvania, as he puts it, Sugar realized at 12 years old that he was gay. One evening, he was in the living room with his parents watching a movie on television, “That Certain Summer.” 

“Gay characters were portrayed in a positive light,” he said, “and I recognized that is who I am.”

However, Sugar, who moved to Hollywood shortly after graduating from school, kept his sexual preference secret from his family for many years. He was 30 when he decided to reveal his true self at a Thanksgiving dinner.

“I had gone home to have this conversation with my family,” he said. “I told [my parents] I had a boyfriend, and he was family.” 

During dinner, the phone rang and his father answered. He called out, “Michael, it’s for you.” 

It was Sugar’s boyfriend. Nothing else was said until the next morning.

“When I came downstairs, my father casually said to me, ‘Was that your friend calling?’” Sugar said. “I said ‘yes.’ My father said, ‘He seemed very nice, very polite.’ There was a pause. Then he said, ‘Is he Jewish?’”

Sugar’s face still glowed recalling that moment all these years later. “I knew it was going to be okay, that it mattered to my father that my boyfriend was Jewish,” he said. “The answer was ‘Yes.’”

In 1996, six years after disclosing his secret, Sugar went to work as a volunteer at the AIDS Memorial Quilt in Washington, D.C. His 89-year-old father, a Holocaust survivor, drove 100 miles from Pennsylvania to meet his son there.

“I didn’t think he would be able to understand what this meant for me,” Sugar said. “But he did understand. He said something that day to me that probably was the wisest and most loving piece of advice I ever have received. [He] said, ‘Michael, you’re never going to get over this. You’re never going to get over all of this loss. But you’re going to have to learn to live with this so you can go on with your life.’”

Sugar called it “the most beautiful expression of love, support and wisdom.” 

This was the last time he would see his father.

“I have taken his advice to heart,” he said. “There have been times when I discover that grief is not far from the surface. Sometimes a random memory might scratch the surface. But I have managed to live a very, very full life.”