Positive since 1988
I am currently in therapy for HIV-related non-Hodgkins lymphoma (NHL). Unfortunately I am on my third chemotherapy treatment in nine months. At this point, I have less than a forty percent chance of surviving, although medical percentages are always soft numbers. It is still harsh news to absorb.
Once again I find myself in the same situation as I was in 1989. After one year of being HIV positive, I tested positive for Kaposi’s sarcoma, then an AIDS-defining illness.
Today, Kaposi’s sarcoma usually improves when someone is on HIV meds. But when it doesn’t, as in my case, a round of chemotherapy may be needed. If I had been given chemo when the lesions showed up on my lungs a few years ago I might not now have NHL. The lesions in my lungs have disappeared with chemo but the NHL has not.
On one hand, I am thinking about surviving and making plans for recovery from this illness that has left me jobless, cash poor and very frail. (Thank God for Social Security Disability, Medicare and state health insurance.) On the other hand, I am considering stopping treatment and waiting for the NHL to take over and letting death come within the year.
I often tell my friends, family and doctors that in 1989 I just asked the universe to let me see my two twin girls grow up. They are now beautiful, young women and I am a grandfather. I have had 20 years that other friends and family who died of AIDS did not get.
I am so grateful for those 20 years. I have contributed as a dance instructor over the years and every day I get emails from previous students who tell me how important I was to them. My family is the light of my life. I truly have a legacy and that is very sustaining now.
I have also led writing groups and written short scripts about surviving AIDS. We often talk about survivor’s guilt but what about survivor’s pride? What about those of us who after years of struggling with AIDS have had the other shoe drop (so to speak) and are again faced with death?
What three adjectives best describe you?
Funny, stubborn, intelligent
What is your greatest achievement?
What is your greatest regret?
Not wearing condoms
What keeps you up at night?
Pain and worrying about details of life
If you could change one thing about living with HIV, what would it be?
What is the best advice you ever received?
Lips together teeth apart
What person in the HIV/AIDS community do you most admire?
A friend who has beat all odds and contributes everyday helping others
What drives you to do what you do?
A desire to make meaning
What is your motto?
Just do what you can do
If you had to evacuate your house immediately, what is the one thing you would grab on the way out?
My teddy bear along with my pets
If you could be any animal, what would you be?
A very loved and cared-for dog
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