While in Durban at the International AIDS Conference this past summer. I stopped at a booth in the Global Village. A series of stunning black and white images caught my eye. The booth was the work of The Graying of AIDS http://www.grayingofaids.org/ the photos by Katja Heinemann the Project Co-Director (above) and a visual journalist. Later I sat down with the project’s Naomi Schegloff for an hour-long interview.
I came back later and my portrait, seen here, was part of the exhibit..
Wonder what the project’s focus is? “The Graying of AIDS combines portraits and oral histories of both long-term survivors and older adults who contracted HIV later in life with HIV/AIDS information to increase awareness, sensitivity, and collaboration among caregiving professionals”.
Here is an excerpt from my interview that appeared on World AIDS Day this year"
HIV is the kind of thing you can’t really understand until you experience it, because remember, in those days we’re talking about, it was a death sentence. And since then, we’ve had to go through this period where, after treatment, suddenly it wasn’t a death sentence. That’s a – I use the expression “mind-fuck,” for want of a better word. It is! It’s a crazy, crazy thing to negotiate.
Looking back, you wonder why you were so lucky. It really was just luck. It’s just a matter of timing. If I had been diagnosed, say, in 1990 or 1991, my story would be very different, because treatment would probably come too late. I was diagnosed in ’93. Treatment came in 1996. I was in the clinical trial of something called Saquinavir? Just when I was starting to go downhill, along comes this lifesaving drug. Plus, you’re just coming out of a situation when your friends are dying and you know this is what’s gonna happen to you. So, I mean, that’s a crazy situation to negotiate.
I think we’re now in an era where the focus has gone off long-term survivors a bit. Some of us, including me, kind of feel a bit left out in the response to HIV. We’re seldom mentioned, you know, in the plenaries… or anywhere, really. Some of us are not doing very well. Some of us are dying because we’ve run out of options through treatment. Plus you’re getting older and older, so there’s a feeling, I think, that we’re neglected. There’s things happening to our body, and people aren’t really paying much attention to us. I hear that through social media a lot. There’s a sort of long-term survivor activism now, and some people are saying, “Hey, wait a minute.” We started the community-based response. There’s issues of, of… of respect, I guess? You know, we don’t ask for respect, but we feel we should probably get it. Yeah. And we notice if we’re getting respect. We notice if we’re getting acknowledged.
I made a conscious decision to move out of a stressful urban environment, downtown Toronto, and move to rural Ontario. It’s very quiet, and the birds are singing, and seemed kind of mentally healthy. Plus, some very practical things, like using public transport, you’re exposed to germs and stuff. So, I went for it. I went for rural living. I got a dog. Moved to a farm. And it worked. I just felt better about myself.
Although our health may be in decline and our minds may be in decline and our memory may be in decline – memory is a big one, I should mention that! – um, in many ways, we are operating at full force. We are realizing all the things we’ve experienced in our 70 years are sort of coming to fruition. We’re able to use all we’ve learned. We know what works for us and what doesn’t. So that is potentially, rather than a sort of fading thing, it can be a very rich experience, being old. And even the mortality thing – if I can figure that out, and maybe even be sort of comfortable with dying, which some people are – I mean, I’ve got the whole package going, you know? I’ve got this one piece which is, you know, a mess. But the rest of the stuff, I’ve kind of got pretty well together.
This portrait and interview excerpt previously appeared at The Graying of AIDS, here.