By Joanie Juster–
It seems that I have the reputation of being a volunteer. But it has not always been so.
Sure, I volunteered in high school and college, mostly for events and fundraisers. I didn’t yet know how to get involved in political causes or movements. Then, when I moved to San Francisco in 1978, I was absorbed in building a life, a marriage, and a career in theater and cabaret.
AIDS changed everything.
It started with rumors and whispers of people getting sick. Then articles about a deadly new disease. Friends, colleagues and people from the neighborhood began to disappear. Every night of the week, another bar, another theatre, another cabaret organized performances to raise funds to help people with AIDS. I donated money when I could, but I still haven’t participated.
I was no stranger to death. As the youngest child of older parents, I grew up going to the funerals of grandparents and countless elderly relatives. But this dark cloud hanging over San Francisco was something new and terrifying. It was my young comrades who were suffering and dying. “What could I do?” It was all so overwhelming, so deadly, so sad and heartbreaking.
In 1987, AIDS Walk San Francisco was established, along with the AIDS Memorial Quilt. Both intrigued me, but that year I was caring for my dying mother and could only watch from the sidelines.
Then a tsunami of loss hit me. My mother passed away in early 1988, followed soon after by my favorite aunt, a beloved uncle, my dear friends David and DW, and more and more friends, colleagues and neighbors. San Francisco was drowning in grief, and so was I.
I sank into a 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 to me without judging, and after a few weeks, gave me the best advice of my life: Her suggestion for overcoming my grief? Help others.
An opportunity soon presented itself. My friend Carol invited me to join her for the 1988 AIDS Walk. It was a solemn affair – about 1200 of us walked quietly and cried in the thick fog of Golden Gate Park. I was comforted to be among so many others who shared the same deep sense of loss. We supported each other. And I was inspired by its grassroots nature: individually we might not have a lot of money, but collectively we could make a difference, raising much-needed funds for AIDS service organizations across the Bay Area. I was hooked.
Then I heard the Quilt was coming back to DC in October 1988. I decided to do a panel for my first deceased close friend, David Percival. I returned David’s panel at midnight on the panel submission deadline for the DC display. When I saw the Quilt Shop full of FedEx boxes carrying signs people had made for their loved ones, I knew I couldn’t give 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 DC in October and have been a part of it ever since.
AIDS changed my life. I found direction, purpose, home, family. Since those early experiences in 1988, I have continued to be involved with both AIDS Walk and the Quilt. And then the AIDS Emergency Fund, the National AIDS Memorial Grove, PRC, and more. In 1990, in an effort to reciprocate, I became a Shanti volunteer, providing one-on-one practical support to people living with AIDS. This was before life-saving drug cocktails were invented; every one of my clients died.
For more than three decades, I have supported AIDS service organizations, as well as friends and family members living with HIV/AIDS, by organizing fundraisers, cleaning houses, sewing quilt boards, marching and protesting government inaction, writing press releases, coordinating readers at quilt shows, recruiting volunteers, fighting stigma, being an ally. I have provided emotional triage to countless grieving parents, friends and lovers at Quilt shows, giving them a shoulder to cry on and a safe place to share their pain. These days, a big part of my job is to provide support to long-time survivors of HIV/AIDS and to ensure that our stories are not forgotten.
I always said I was just a foot soldier in those epic battles. I do not create or lead organizations; I’m rarely in front of the cameras or the microphone, and I tend to work in the field. My contributions to these efforts are modest; so many others have done so much more. If anything makes my story unique, maybe it’s just that once I started, I couldn’t stop.
HIV and AIDS are not over. There is still work to do. So I will continue to work.
Joanie Juster is a long-time community volunteer, activist and ally.
Posted on July 14, 2022