And So We Prepared to Die
AIDS @ 25: Personal Reflections on the Epidemic
I was young then, with a toddler and a preschooler at home. It was 1991. The virus was a final legacy of a marriage already ended. I knew television studios and White House travels -- not AIDS clinics, or how to find the right doctor, or whether there were other women like me.
"The AIDS community" that had grown up was predominantly a community of gay men learning to convert condos into hospices. There had been a spurt of AZT-inspired hope in the '80s, but the hope fizzled; AZT helped but it didn't heal. The infected were, we knew, fighting a losing battle, bailing a sinking ship, holding back a viral tidal wave that would eventually take our lives. And so we prepared to die.
I started journals for my sons so, when I was gone and they could read, they would know I had loved them. I wrote and rewrote wills, worried deeply about guardianships, sought answers no one had. I took on dying as I had learned to take on everything: It was a project. I accepted it, organized it and planned for it. I decided to speak out, as publicly as possible, because I only had a few months or years.
The dying assumed that the "AIDS crisis" would mount, that voices demanding support and care would become louder and more persuasive, that ignorance and stigma would be replaced by reasoned, compassionate policies. If science were to defeat the virus, it would come too late for us. Our job was to speak truth to power, quickly, and prepare to die.
I am not so suicidal as to wish that ARTs (antiretroviral therapies, "the cocktail") had never come along. But the truth is, I was no more prepared in 1996 for the prospect of a long life than I had been in 1991 for the promise of a short one.
What I've learned since ARTs have prolonged our lives is that cultural change is hard. Africa is still poor, Asia still in denial, America has gone to another war. Satellites and the Internet have taught us to think globally during this decade, but millions of dusty orphans wandering the Sub-Saharan move us to no more than a sigh. Headlines have moved on. Celebrities have taken up more glitzy causes. Communities of color, of women, of immigrants lack the resources (knowledge, power, money) the gay community had; these neighborhoods host dying very quietly. Those who cannot access ARTs will die; those of us who have access live in daily guilt for the very act of living.
Had we known we would live, we might have organized a better struggle for justice. We might have looked for gifted youth to become advocates, to collar Senators and protest Presidents. We might have filed lawsuits demanding justice and found journalists who would not let the story die behind the obituaries. But we didn't know.
We worked on dying, never expecting that Iraq would take billions and the bird flu would grab the headlines, while orphans and AIDS slipped quietly out of our sight.
Mary Fisher was a television producer and an assistant to the President of the United States (George Bush) before she gained international recognition as a leading speaker, author and chronicler of the global AIDS epidemic.
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