I just remember being very naïve, you know, and people would tell me to do something, and I would do it. I didn’t know any better. The good news is is that they told me– this is when AZT was the only treatment. And they put me on AZT and I just took it, because they told me to. You know, I’m a good girl; that’s what good girls do.
And luckily, because I’m more the size of a man than a petite, small woman, I think the dosing was more appropriate for me. And so I didn’t get sick the way that a lot of my friends, or other people I knew – especially small, very slight women – were getting sick as dogs. Then it was like, “I’m not taking AZT! I’m– considering it poison.” And then it turned out three years later people were dead. So…
But I just took it, because they told me to. I didn’t have any really reaction to it… and I’m still taking it, along with other things. It’s almost now, I don’t know, what is that? 26 years or something? 27 years later. But I’ve been very compliant with drugs, and I’ve been very healthy.
I remember lots of times speaking at groups and people would come up to me afterward and say, “Oh my god, I didn’t know that we could get it.” You know, or, “I didn’t know that women, white women could get it.” Or, “I didn’t know that someone like me could get it.”
That was just kinda like, you assumed that you would make your way in the world, and you would go forward and it wasn’t, you know . . . I didn’t assume I was gonna have a life of poverty or, you know, that kind of thing. So, um, yeah, my situation is very different than lots and lots and lots of people. . .
I think the best thing about growing older, either, probably with or without HIV, is having a sense of perspective? And I feel like, because I’ve gone through those horrible, horrible days of HIV, and my experience was so good compared to other people’s – I’ve never been sick, I’ve been very compliant on my drugs, I’ve never had bad reactions, I mean just . . . It’s the complete opposite of almost everybody I know. I feel like I’ve– it’s been, it’s been very hard emotionally, but it’s been sort of easy physically, I guess is the way to put it.
I think I live with a little shame. Because I feel like, even though it’s not rational – you know, it was back in the late ‘80s, like a whole ‘nother lifetime ago – I feel like I shoulda known. You know? I shoulda somehow known how to protect myself. I mean, I’m smart. I was educated. You know, I come from socioeconomically, you know a, a, good place. I just I shoulda known. But I don’t wanna be mad at myself either.
It’s taken a lot of years. I mean, coming from what they said, “You know you have six months to live,” to almost 30 years of living with this disease and it’s such a different world now, you know? And, and I’m, I’m really, really, really glad that I’m still here, um, which is wonderful. But it’s just kind of bizarre on some level too, you know. It just doesn’t . . . none of it makes sense, you know?