I was diagnosed with HIV while a freshman at college. After an honorable discharge from military service, I joined an HIV support group and started to take AZT when my CD4 cell count started to drop. I took my medication without missing a dose. I went in for a blood transfusion after my red blood cell count dropped. My doctor asked why I waited so long to seek help. I thought it might be my stubbornness.
Back then, I was taking ddI and AZT. I had pneumocystis pneumonia (PCP), thrush and skin ulcers and at one point I lost a couple of toenails. I was about 110 pounds and had constant diarrhea. Then I started taking Invirase and Norvir, both in liquid form for a drug trial. A viral load test had just come out, and my HIV doctor told me to remember my viral load number. He said it was very important. Mine was high, and I was very sick.
I drove to the drug trial and parked my car. It took me about 45 minutes to walk from my car to the appointment. My CD4 cell number was a single digit. After I began taking Invirase and Norvir, my viral load became undetectable.
At my last appointment for the drug trial, it took me only five minutes to walk to the appointment. I stopped to recall the spots where not long before I had rested to make the journey and recalled how different each step felt. All those long hours spent sick in the hospital with swollen glands and other opportunistic infections had left me thinking my time in this life was short and my future was bleak.
Since then, I got a windfall of money and paid off some old debts and took the rest and purchased a home. I thought the place looked like a nice place to die. That was more than 20 years ago.
I haven’t accomplished much in the last two decades. The house was run-down when I moved in, but I didn’t care because I was not expecting to live there long. I have been surprised by every year that has passed.
I’m having difficulties watching TV or reading. My mind wanders to my vast memories and all the people I have met. My shrink and therapist have changed my meds, so I am not as annoying to others. Even though being annoying is one thing I am very good at.
What three words best describe you?
Argumentative, protagonist, antisocial.
What is your greatest achievement?
What is your greatest regret?
That we live in a society so full of judgment and contempt for anyone who does not live by the “rules” or by the way they think life should be lived.
What keeps you up at night?
That the other shoe will drop, and this respite from the death I feared will return.
If you could change one thing about living with HIV, what would it be?
That there never was a thing called HIV.
What is the best advice you ever received?
Play the hand you are dealt.
What person(s) in the HIV community do you most admire?
Long-term survivors like myself who lived before effective HIV medications.
What drives you to do what you do?
The hope that tomorrow will be better than today.
What is your motto?
“Try, try, try, do or die.”
If you had to evacuate your house immediately, what is the one thing you would grab on the way out?
If you could be any animal, what would you be? And why?
A bird, to fly away from earthly problems.