My 38-Year Journey Living with HIV
Mark Grantham,
February 2023
I remember it like it was yesterday, but it was June 1984—38 years ago. It was the day I received my HIV diagnosis. My name is Mark Grantham and I had just started graduate school at the University of South Florida’s (USF) Tampa campus. I saw fliers on the light poles and trees of the campus, asking for gay men to come to the Medical Center so I did. USF was, and is, a very active medical research school. When I went for my results, I was ushered into a room with 25 or more medical individuals. I turned to the nurse, and said, “I guess I have it, otherwise these people wouldn’t be here.”
The name HIV (Human Immunodeficiency Virus) hadn’t yet been given to this strange disease. The lead doctor of the research study informed me that I carried an antibody. I had been “exposed” to the virus to use his words. I was a young man, only 23 years old. I believed that I had a long life ahead of me. However, he let it be known that he wasn’t sure how long I had to live, probably less than three years. I was gob smacked. I truly didn’t know what to do with my remaining years. I walked across campus, went to the Registrar’s Office and dropped out of school, immediately. Then, I drove across the Howard Frankland Bridge into Saint Petersburg and quit my job as a buyer for a major department store. Now what? My life spiraled downwards. I was out of control and my drinking was, too. Slowly, I started to realize that my life wasn’t ending as quickly as I’d imagined. Apparently, I still had some years left on this planet. So, I did some serious soul-searching, looking for my “calling”—the fire in my belly. It was during this time of reflection that I discovered that education was my calling. I took a few classroom management courses, interviewed with some schools and voila. I became an English and history teacher.
This was before the advent of pharmaceuticals. So, I started to lose weight. Fortunately, I listened to my doctor, stopped drinking and persevered. I can say that quitting drinking helped my journey, significantly. As various HIV drugs became available, I took all of them it seemed. I figured if I was going to die, as I had been told, what the heck. I took AZT but it was a short-lived regimen for me. I saw what it was doing to my late spouse and many others. I told the doctor that I would wait for something else and there were many experiences.
As far as drugs and pills were concerned, I had the worst time with the liquid Norvir. There was a sterility issue with the Norvir capsules at one time. So, I made my own capsules with gelatin capsules, liquid Norvir and an eye-dropper. Then, pharmacies around me had a shipping issue with the gelatin capsules. Again, I got creative. I resorted to making chocolate milkshakes with the liquid Norvir added into it. I cannot lie. The liquid Norvir tasted like gasoline. Yet, I persevered. I knew it was working because I began gaining weight.
These issues helped me to find my voice as an advocate and activist. I began to get involved with ACT- UP, working as a case manager when there were none. I was able to be a buddy with a few others that were living with HIV. Being a buddy meant that I took them to various appointments, did their shopping, sat with them and basically let them know that they mattered.
I also protested on many occasions. I was in the middle of a DIE-IN in the rotunda of the nation’s capital in Washington. I was a part of the protest with ACT-UP at the Food and Drug Administration (FDA). participated in various events, knowing that I could be fired. It was illegal to be a teacher in the Pinellas County School System if you were gay or HIV positive. I like to think that these actions assisted me along my path of activism.
I also spent four years in the Middle East. I was in Syria, teaching at a private English Medium school. I was in Homs and Damascus. I never applied for residency, for this would have required me to submit to a blood test. I knew that when the blood test showed that I was HIV+, I would have been escorted out of the country. Instead of residency, I had my visa renewed every six months. The dangerous part was getting my medicine, I had to go to Lebanon, the next country from me. I would pick up my meds, hide them in the recesses of the car and drive back to Syria, hoping that the border guards wouldn’t discover
them.
Fast forward to 2009, I had to return the United States to get my visa renewed stateside. It was during this time that I was diagnosed with a brain tumor and toxoplasmosis. I had two T-cells. I named them
Adam and Eve. With the partnership between my I.D. doctor, my oncologist and my neuro-surgeon, I was finally cleared of the tumor, my T-cells rose, and I no longer looked like “death warmed over.” In 2014, I moved from the beaches of Saint Petersburg, Fla. to the mountains of Tennessee. I had fallen in love and the whole long-distance relationship thing wasn’t going to cut it for us. I fell in love with Butch Ferney. He was very active in HIV-related issues and events in Tennessee. Unfortunately, in 2015, he passed away because his pancreas burst. He left behind a legacy of HIV in Tennessee activism, a son, and now three granddaughters. I continue my HIV advocacy and activism for him, his son, his three granddaughters and for myself.
Things are very tough in Tennessee as far as HIV prevention is concerned. I actively advocate for PLWHIV in Tennessee, as a result. As Elaine Stritch sang in Follies, “I’m Still Here!” I will continue the journey of HIV advocacy and activism until I can no longer.
