As told to Josh Sparber
Photo by bob stockfield
Baltimore, 10.03.02
Cover Girl, POZ, 12.98

When I first decided to be public in 1995, my idea was to network with other women. Then came the National Association on HIV Over 50, where I was board co-chair and then national coordinator. But seven years had gone by, and I only have so much energy. So last May I left to start a new program, HIV Wisdom for Older Women ( Right now, it’s still me going out and speaking, but I envision so much more. I just think if I could network with older women and we could talk about how we deal with disclosure and deal with our families, we will learn so much from each other.

older women do bring a different set of issues. For the most part, we’re past menopause, so we have to worry about the interactions of any drugs we might be taking, like hormone replacement therapy, with our antiretrovirals. And we’re supposed to be the matriarchal nurturer who takes care of the family, but if we’re sick with HIV, how can we fulfill our role as caretaker? I certainly know of many older women who have HIV and haven’t told anyone in their family. Often, we have to deal with this alone. The perception is “Well, what’s an older lady doing out there having sex or using drugs?”
For those who think that older women are asexual, well, it isn’t true. Older women enjoy sex just as younger women do, perhaps not as often, but there have been studies done, such as one by the National Council on Aging, where 1,300 men and women over the age of 60 said that their sex lives were more emotionally satisfying now than when they were in their 40s. Also, I might remind any younger person who thinks that sex stops at a certain age: You know, if sex is fun—and don’t we all agree it is fun?—and very pleasurable, then why stop having fun or experiencing pleasure just because you have reached a certain age?

My viral load has been undetectable since 1996 and I’m no longer on a protease inhibitor. I don’t want to knock them—they helped save my life. But, gosh, the side effects of my current combo—Viramune and Combivir—are fewer and I feel so much better. My lipodystrophy is less obvious. My midsection is not quite as swollen, but there are other reasons that older people gain weight through their middles. You know, as you get older, you tend to get shorter and wider. It’s just that nagging question whenever anything happens if it is HIV or simply the fact of my age.

So far, I’ve been getting incredible encouragement and support, but it’s always a battle to get the issue out in front. I certainly see a difference between when I started talking about the issue and now—there’s more interest, but it’s still such a small amount. I just received a letter today from an older woman in Uganda thanking me and saying that she’d like to start something like this there.

I don’t date. I was very wounded at the time of my divorce, and then I became infected with HIV by someone I thought I knew well and trusted. I had to sit back and think about what kind of a relationship or life I wanted. And right now that doesn’t include dating. This isn’t to say that someday, somebody won’t come along, but I’m not out looking. My son Stephen, and his wife, Mirjana, are my best support—always there if I ever need them. They’re fun too. I’m having Christmas with them— they understand the work I’m doing, and may even be proud of it.