Regarding "telling the world," in my previous entry, Breast Health Awareness, continued--I really did do that. I told the world. I was in the irresponsible cover story of Newsweek in the middle of the nineties, entitled, "The End of AIDS?" To see a picture of the cover of that issue, see NIH. I'm not kidding.
If you wanted to know who I am, you could figure it out that way. I used it as ID once before. I was not allowed on a plane at JFK, (several years pre-9/11), when I had lost my ID the week the issue came out. When my excuses with the airport security guard failed, I ran to the nearest airport concessions stand and bought a copy of the magazine. I ran back to the guard with the issue opened to the first page of the article with my white girl picture subtitled with my name and HIV diagnosis date. The guard had no idea what to do with all that information and let me board my flight.
In my long phone interview with Newsweek, in the middle of the nineties, I said over and over again different ways that the advent of protease inhibitors was not the end of AIDS. A lot of people, at least here--San Francisco, knew that well already. The interviewer kept asking me the same questions different ways, like he wanted to catch me saying something that sounded like I was saying I was healed, when I could hardly take those meds side-effect-wise. (Interleukin was the trick for me, later, not protease inhibitors.)
I didn't look sick then, but that didn't mean I was any better,--yet. They sent a local Newsweek photographer to take my picture at a board/dinner/cocktail meeting. You can't always take a picture of disease. We didn't all have wasting and Kaposi Sarcoma lesions.
I said to the phone interviewer that the new treatment options were hopeful, but that their results were different for different people, and difficult--to impossible for some of us to take, and that not everyone had, or would have access to them. And that to suggest the end of AIDS--(albeit with a question mark, and the small text title qualification: "Not Yet, But New Drugs Offer Hope")--would jeopardize prevention efforts, and funding for the supportive services that access, adherence, and good results depend on.
But that wasn't Newsweek's story. So they put me, first picture in the article, looking well, (and young and white and female), with my name and longterm-survivor date of diagnosis--which had nothing to to with the new drugs offering hope--without using a word I said. As evidence of what wasn't true.
I told the world a lie, smiling, mute.
But I am, for all kinds of reasons, one of the ones still here, still with AIDS, to say what I want, for whatever it's worth, to try to make up for it now.