Why Am I Still Here? (Summer 2004)
Living with AIDS over 50 ... I had to sit and think on that a while to bring it into focus. I am a "Long-Term Survivor," having been HIV-positive almost half my life. Is HIV/AIDS still a major concern for me now that I'm over 50? One thing I like about writing a "personal perspective" is that you're thinking about only your own situation. So let me begin.
I truly did not expect to be around this long. To give you an idea of how long I've been living with AIDS, I remember my first HIV prescription: 100 mg of AZT, two pills five times a day. How far we've come now that HAART has been instrumental in saving so many lives.
I used to be consumed with the thought of dying from some AIDS-related illness, and having seen so many die over the years affects how I feel now. I knew that I had hepatitis C back when they called it non-A/non-B hepatitis, but I never bothered with it or with treatment when it became available, since I figured I'd die of AIDS first. But as the years piled up, my thoughts started to change: "Hey, maybe I'm not going to die and should start looking forward to some kind of future." So when I turned 50, I went on treatment to try to clear the Hep C virus or at least get some improvement in my liver function.
I continue to take meds for HIV, but other problems manifest themselves as I age -- things like hypertension, high cholesterol, and depression (which was the hardest thing to deal with). Conversations with my doctor are now only partly related to HIV -- they're more about checking my prostate and getting the colon cancer tests that are recommended for men over 50. Thankfully, on those fronts, so far, so good. But they've become another set of issues to deal with.
I also found that as more time passed I started to lose interest in sex. I had to address whether it was due to the fog of depression or all the medications I was taking. Oh, yeah! It was solved with Viagra, but there I go again -- another pill to take. Still, it was one of the best improvements in my quality of life.
Even people that I've known for years are not the same anymore. As time goes by, I've found it has become easier for me to talk about living with the virus, but I've noticed that some of my HIV-negative friends cop an attitude when I try to make sure they have correct information about the virus. On the other hand, some of my positive friends (depending on how they were doing) have been there to support me.
So I decided to reestablish my relationship with my family. We had been estranged for many years due more to my lifestyle than any actual problems with family members. Now I wish I had repaired the relationship earlier. You see, when I reconnected with them, the first thing I brought to their attention was that I was living with AIDS. That prompted three other family members to acknowledge that they were positive but living in denial. I bring this up because I had been volunteering and getting trained in AIDS education since 1988. I was reaching out to help reduce fear and offer a beacon of hope to others living with the virus -- everywhere but at home.
As I continue to age, the fire to educate and advocate for others and myself is still there. The only difference is that now I pay more attention to myself, doing whatever I can to manage or lessen the impact of aging. I lost about 30 pounds, which helped lower my blood pressure and means one less medication to take. I exercise at least three days a week and talk more to nutritionists about how to prepare healthy meals. I still volunteer, cooking in drop-in centers for the homeless, and educate. However, it's more about Hep C than HIV/AIDS now.
I am looking forward to having a more productive life, being able to deal with the other concerns that come with aging. Though at times I wonder -- why am I still here after 24 years with HIV while so many family members and friends have died?
Sometimes I feel like not waking up the next morning. That's when I reach out to old and new friends so they can remind me that it's only a feeling and shall soon pass. I finally feel comfortable enough to develop a regular relationship and deal with whatever comes along. So here's to 52 years and looking forward to 52 more.
Paul Muller, 52, is a member of ACRIA's Community Advisory Board and a hepatitis C peer educator with the Harm Reduction Coalition.