In the glorious taste of the first tomato of summer I feel a freedom unlike any since my friends started dying.
Do you remember what it was like to feel healthy? Do you recall having an expectation of growing old with your friends?
I know I once had these feelings, but I don’t remember them anymore. I want to.
In the past year, I’ve spent an increasing amount of time in Pennsylvania, where my partner, Xavier Morales, and I have a home and some land. I’ve found that a rural area—not Manhattanites’ usual slice of “country” in the Hamptons or Fire Island, but a truly rural community (we live at the end of an unmarked dirt road)—has brought me a sense of peacefulness that I treasure. More important, it has helped me inch back toward feeling healthy and envisioning a future, despite the ups and downs of my disease.
Over the course of the AIDS epidemic, my memories have become so burdened with loss, regret and a corrosive sadness that they almost have crowded out the joy and expectation I once felt about the future, the vitality I used to take for granted and the freshness of love. The honesty and simplicity of rural life—in contrast to the often-artificial push-and-shove of politics, media and fast-paced city life—has nourished my soul. While not relieving the epidemic’s emotional weight, it has helped lighten it.
Fighting AIDS involves more than preventing the spread of a virus and finding new treatments. It is also about keeping a firm grasp on the pleasures in living day to day that our own ill health or that of our friends can steal from us. This isn’t easy, especially for those whose health is failing or for those who wrestle with debilitating side effects.
The challenge is to retrieve the joy despite the disease. I’m trying to do that. To find joy in the present. To imagine a future. Survival isn’t enough; I want something more.
I can’t erase my experience of the epidemic, nor would I want to. But sometimes, when the trout are biting, or when I’m feeding my chickens and geese, or when I’m reveling in the glorious taste of the first tomato of the summer, I get a fleeting moment of freedom unlike any I’ve felt since my friends started dying. That freedom is about defining my life outside of this disease, reborn from the pain of the past and the fear of the future.
I never thought I would live this long. In 1985, when I was first diagnosed, I assumed I wouldn’t see the age of 30. In the years since, I’ve seen my friends, culture and community decimated as if a bomb had exploded in our midst.
The Vietnam War was, as I grew up, a Walter Cronkite–narrated abstraction on the evening news that evoked in me both disgust and fear. I was an eager protester, participating in the November 15 moratoriums and May Day marches and wearing a black armband, made by my friend Lindy Lindberg’s mom, to Lincoln Elementary School in Iowa City. I was terrified of reaching draft age and relieved when my Selective Service number came up a relatively high 205. I felt like I had narrowly missed a bullet.
I hadn’t. Instead I got drafted by a virus into a very different war. One that suffered for not having a Walter Cronkite to rub America’s nose in the body count every evening, in the face of its own destruction, its own loss.
War analogies are tired, I know. But they’re undeniably apt when the subject is AIDS. The other day I saw someone with whom I’ve shared a mutual dislike for 20 years. Seeing him alive was a surprise; more surprising was how much we had to talk about. As survivors—veterans, if you will—what we now have in common far outweighs our long-held differences.
I still fight for my survival every day, a fact brought home by scores of pills and the never-ending parade of new and ever-more-bizarre side effects. But for the time being, my battle plan is to spend more time walking in the woods with my dogs, Willy and Olive, listening to Piaf on the stereo while Xavier’s rice and beans cook on the stove, and cherishing the friends, love and time I have right now. In this moment.