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    A Foot Soldier in the Battle Against HIV/AIDS

    By Joanie Juster–

    It seems I have a reputation for volunteering. But it wasn’t always that way.

    Sure, I volunteered in high school and college—mostly for events and fundraisers. I didn’t yet know how to engage in causes or political movements. Then when I moved to San Francisco in 1978, I was absorbed in building a life, a marriage, and a career in theatre and cabaret.

    AIDS changed everything.

    It started with rumors and whispers of people getting sick. Then news articles about a deadly new disease. Friends, co-workers, and people in the neighborhood started disappearing. Every night of the week another bar, another theatre, another cabaret hosted benefits to raise money to help people with AIDS. I contributed money when I could, but still I didn’t get involved.

    I was no stranger to death. As the youngest child of older parents, I grew up going to funerals of grandparents, and endless elderly relatives. But this dark cloud that was hanging over San Francisco was something new, and terrifying. These were my young peers who were suffering and dying. What could I do? It was all so overwhelming, so deadly, so heartbreakingly sad.

    In 1987, AIDS Walk San Francisco was created, as well as the AIDS Memorial Quilt. Both intrigued me, but that year I was taking care of my dying mother, and I could only watch from the sidelines.

    Then a tsunami of loss hit me. My mother died in early 1988, followed in short order by my favorite aunt, a beloved uncle, my dear friends David and DW, and more and more friends, co-workers, and neighbors. San Francisco was drowning in grief, and so was I.  

    I sank into deep depression, paralyzed by grief. My friend Sharon, a Shanti volunteer, saw that I needed a lifeline, so she helped me become a Shanti client. I was assigned to an emotional support volunteer, a former nun named Margaret. She listened without judging, and after a few weeks, gave me the best advice of my life: Her suggestion to get past my grief? Help others. 

    An opportunity soon arose. My friend Carol invited me to join her for AIDS Walk 1988. It was a solemn affair—about 1200 of us quietly walking and crying through dense fog in Golden Gate Park. I drew comfort from being among so many others who shared the same profound sense of loss. We supported each other. And I was inspired by its grassroots nature: individually we might not have much money, but collectively, we could make a difference, raising vitally needed funds for AIDS organizations throughout the Bay Area. I was hooked.

    Then I heard that the Quilt was returning to D.C. in October 1988. I decided to make a panel for my first close friend who had died, David Percival. I turned in David’s panel at midnight on the deadline for submitting panels for the D.C. display. When I saw the Quilt workshop piled high with FedEx boxes bearing panels people had made for their loved ones, I knew I couldn’t just hand the Quilt volunteers more work, and then leave. I had to stay and help.

    And so, I stayed to help that night. And the next night. And the next. Thanks to the generosity of friends, I accompanied the Quilt to D.C. that October, and have been part of it ever since.

    AIDS changed my life. I found a direction, a purpose, a home, a family. Since those first experiences in 1988, I have continued to be involved with both AIDS Walk and the Quilt. And then AIDS Emergency Fund, the National AIDS Memorial Grove, PRC, and more. In 1990, in an effort to return the favor, I became a Shanti volunteer, providing one-on-one practical support to people living with AIDS. This was before the life-saving drug cocktails were invented; every one of my clients died.

    For over three decades I have supported AIDS organizations, and friends and family with HIV/AIDS, by organizing fundraisers, cleaning houses, sewing Quilt panels, marching and protesting against government inaction, writing press releases, coordinating readers at Quilt displays, recruiting volunteers, fighting stigma, being an ally. I have provided emotional triage to countless grieving parents, friends, and lovers at Quilt displays, giving them a shoulder to cry on and a safe place to share their pain. These days, much of my work is focused on providing support to long-term survivors of HIV/AIDS, and to making sure that our stories are not forgotten.

    I have always said that I am just a foot soldier in these epic battles. I don’t create or lead organizations; I’m rarely in front of the cameras or the microphone, and I tend to work at the grassroots level. My contributions to these efforts are modest; so many others have done so much more. If anything makes my story unique, it may simply be that once I started, I didn’t know how to stop.

    HIV and AIDS are not over. There is still work to be done. So, I’ll just keep working.

    Joanie Juster is a long-time community volunteer, activist, and ally.

    Published on July 14, 2022