By Jeffrey Moualim
We were going to a special place that held time in suspense the National AIDS Memorial Grove to honor those who had fallen to a disease I had once feared as an insidious enemy. There were times even hearing or discussing Acquired Immune Deficiency Syndrome gave me an uneasiness that could still darken my mood with trepidation. I had lost my second cousin Edmund Ezra to HIV/AIDS in the 1980’s. A kind soul who in his waning days I could not face fearing I might be next. Now deep in my thoughts as we drove to the Grove, I hoped this would in some cosmic way show Edmund he was not forgotten.
My life that day felt like I was beginning to complete a circumference, a journey that started for myself so many years before and now was making a full circle toward acceptance and closure. Acceptance that my struggle was not unique, my demons were not singling me out, and that my path was not walked alone. Closure, in my realization that my fears and my “idols of the mind” were my manifestations and did not have to be my reality.
I was born with Hemophilia in 1955; I did suffer early on from joint bleeds and painful episodes. That after 10 years my community saw a shining light in the development of Factor VIII and Factor IX concentrate in the late 1960’s only to see that light dim into despair and darkness with the onset of HIV/AIDS and Hepatitis C entering our blood product supply just ten years later. The product we relied on to prevent or halt internal bleeding was now a high stake game of Russian roulette. Parents with children with Hemophilia were forced into making life and death decisions and teenagers and young men like me were cognizant that with every injection of factor the very real possibility of being infected was much more than a talking point at a medical conference. We were at ground zero, a battle we did not ask for, a war that caused casualties seemingly every day.
As HIV/AIDS progressed through the Hemophilia community leaving the flower of my generation in ruin our resolve constantly tested. With each and every gathering people who we had grown up with now missing from failing health and/or death took its toll. Our nascent post traumatic syndrome that began with Hemophilia and the long hours of being treated in Emergency rooms and weeks in hospitals now exponentially grew into a three headed monster, Hemophilia, HIV/AIDS and Hepatitis C. And in our darkest hours those who we had put our trust in, the blood banks, the pharmaceutical companies that manufactured factor and even the doctors who had taken the Hippocratic oath “first do no harm” had failed us on an epic scale.
My thoughts drifting, sifting through my own history as my wife and I navigated our way to the Grove that morning. My blessings immeasurable to be alive, to be married to the love of my life, and to have escaped what many of my peers could not, thanks to a miraculous liver transplant at UCLA in 2005. Our car now parked at the Grove today a new chapter to be written.
Every third Saturday of the month from March-Oct the National AIDS Memorial AIDS grove is a beehive of activity. John Cunningham executive director of the Memorial is the maestro and while juggling an already busy schedule proceeded to direct my wife and I where we needed to go. Our first stop was the Circle of Friends, where loved ones can be memorialized in stone and in our hearts. It was this circle that we would revisit later that morning for the remembrance of those lost that cemented an idea I had to come to see. The LGBT Community and the Hemophilia community are concentric circles. They both share the same center, the same core if you will AIDS. Their bond once broken (but not irreparably) by the ignorance and prejudice that tried assigning blame on Gay Men for the tragedy in the Hemophilia community carried sadness above and beyond the initial pandemic. A medical disaster that devastated these two communities should not and will not in the future divide two groups who have far more in common than maybe once realized.
Our tour continued and the words that John said that once inside the grove the city of San Francisco, the noise and distraction fades literally into the wood work of the trees and beauty of this place resonated with me for the balance of the day. My wife Sue was quickly volunteered for gardening and she joined an enthusiastic group of young and old in making sure that the Grove looks its best. I continued with John learning more about the history of the Grove and seeing the boulder dedicated to Ryan White a young man of great courage who because of a blood product he had taken as a person with Hemophilia succumbed to AIDS 25 years ago this past April. Through the morning and early afternoon Sue and I were touched by the camaraderie and spirituality shown by the board members of the National AIDS Memorial Grove and all of the participants who came that day, a true celebration of life. We did not feel like strangers or out of place, in truth we felt we had come home and shared our mutual experiences with those who could truly understand.
When lunch ends (and it was delicious) we all make our way back to where we started our visit at the Circle of Friends. Introductions of visitors are made, announcement of coming events are made known and then with the ringing of a Tibetan bell a moment of silence is observed. We are encouraged to speak the name of someone not with us today. I spoke the name Edmund and hoped he could hear what I could not say to him almost 30 years ago.
When we drove away from the Grove we knew we would be back to visit again. To share the serenity and comfort this oasis brings to those who perished and those of us who have survived.
Concentric Circles had reached out and touched one another. The importance of a shared history of tragedy and triumph to be preserved for generations to come. And the beginning of a dialogue, a cautionary tale of two communities who faced devastation and came out the other side with their dignity intact to be told side by side. That inclusion will help prevent the mistakes of the past from recurring and to leave this world a better place than how we found it.