FIRST PERSON: “Eventually, You’re Going To Have To Go On Living Your Life.”

The morning after I got my HIV test results I got arrested at an ACT UP demonstration.

It wasn’t a spontaneous decision: I’d been planning to get arrested for months. It was a big demonstration at City Hall on the one-year anniversary of ACT UP—I’d joined an affinity group and was all excited about my first ACT UP arrest. But it was rough: The cops were total homophobic assholes—they screamed at us the whole time, “You’re gonna die of AIDS, you goddamn faggot cocksuckers!” and shit like that. And they roughed us up pretty good.  But I’m glad I went through with it.

The night before, after I got my diagnosis, I suddenly wasn’t so sure about getting arrested. I called a friend in my affinity group for advice. He was very droll and very wise. He said, ‘Lee, it doesn’t really matter if you get arrested tomorrow or not. But eventually, you’re going to have to go on living your life.’

At the time of my diagnosis, in 1989, I had read somewhere that the average length of time between diagnosis and death was nine months. I don’t know if that was true—there was a lot of conflicting information back then,—but it stuck in my mind. Nine months is, of course, the length of a human gestation period.  I thought, ‘I’m gonna do everything I can to stay healthy and buy myself another nine months.’  And I keep giving birth to myself.  It’s always surprising.

The biggest negative [that being HIV+] has had was on my relationship: I’d been in a relationship for eight years. It was a good, solid relationship but my HIV status shifted the dynamic. It was subtle at first, but the distance between us kept growing, and eventually, I ended it. We’re still close—he’s my dearest friend and the truth is, we’re better friends than we were lovers. But it took a while to get there.

Ultimately, my diagnosis was a catalyst for a positive change. But it sure felt negative at the time.”


Lee Raines, 57, marketing director
New York, NY
Diagnosed: 3/27/89

Image via Steven Rosen