Back in the 1990s I was facing death and writing of a possible future. I wrote the story from which the below excerpt was taken shortly after I was hospitalized for Pneumocystis pneumonia and my T-cell count was down to 22. At the time, my writing teacher thought it was" delusional." Just two years later, in the introduction to a collection of our group's writings, she described it as "perhaps visionary." Today I am an AIDS elder.
1994: The Song of the Unlikely Survivor
He is often astonished that he is living a vision he had in his 30s, almost 60 years ago.
He remembers how, back in '94, they celebrated the 50th anniversary of D-Day, and how he came to understand the passion of men like his father and uncles, and women like his mother, that heightened sense of idealism, camaraderie and courage in the face of death.
He wears the ribbons of another campaign. He was on the front lines of the plague known as AIDS, acquired immune deficiency syndrome, words that have a softness lacking in the acronym, even after so many years.
Then, he too was ill. But he recovered, and by a freak of heredity and innovation, he lived on.
2013: My Beautiful Life
Recently I attended a forum titled "Is This My Beautiful Life?" It focused on the veterans of the front lines of AIDS: activists and survivors. Like veterans of Vietnam and Iraq, many have not fully recovered.
I seem to have.
However, there's a deep grief that fills my heart. Like many others, I carry both the privilege and the burden of having lived through AIDS, from its mysterious and terrifying beginning into the dark days when the obituary pages of The New York Times were called "the gay man's sports pages," every day bringing the death of at least one more friend, colleague, acquaintance or love, wondering when it would be me. Then, in 1995 and '96, the HIV/AIDS paradigm shifted, and those of us lucky enough to live in developed Western countries began to experience the "Lazarus effect," rising from our sickbeds, some of us with damage, and others, like me, barely scarred.
AIDS is not over. Funding cuts on the federal, state and local levels in this country threaten access to medication and education for prevention. In poorer parts of the world, millions of people with HIV/AIDS are untreated, uncared for and dying. It's still a world war.
And the veterans from the '80s and early '90s can't do it anymore. They have been magnificent, changing the FDA and creating models for cancer activists and others to follow. Some of us still work on HIV/AIDS issues or in affected communities. Nevertheless, some of us are overwhelmed with health and aging issues, and some suffer from post-traumatic stress disorder as a result of years of loss and illness. Some have lost their core support system of friends. Others have not recovered economically from more than a decade of career interruption. We need to support the wounded warriors as we also train and energize the next generation of activists.
The good news is the reviving awareness that attention must be paid to HIV/AIDS. We still have resources in place from the battle days. For example, Friends in Deed, which came into existence 21 years ago to support the ill, the dying and their caregivers and mourners, still exists, offering ill and grieving New Yorkers free groups and crisis counseling, as does an updated version of the AIDS Mastery Workshop. And more will be needed.
I'm fortunate. I'm living my beautiful life. AIDS was a scourge, but it was also a teacher. I live as if this could be my last year on planet Earth, and now I also live as if I might reach the age of "the unlikely survivor" and die in my 80s or 90s. AIDS challenged and opened me. It doesn't have to kill me -- or my brothers and sisters.