Rituals and Regimens 2001
Life after Diagnosis
It has been three years, although it seems much longer, that I've been taking Highly Active Anti-retroviral Therapy (HAART). It wasn't that long ago that I pondered the thought of life after diagnosis, and the reality of popping pills to sustain myself for the rest of my life. In order to get through that period, I had to build myself up mentally before beginning what would become a daily ritual.
I have the honor of calling myself a "long-term survivor" in my own personal war with HIV. In my case, my identity as a seronegative same-gender-loving man of African decent was cut short at the age of twenty-four. I received a seropositive diagnosis by phone in 1989. In person, I was told to get my affairs in order; that I could either get into a clinical trial or start taking a new drug, AZT, to prolong my life.
My life shattered at the news -- shattered as well was my denial about who was most at risk for infection. Since 1990, it is documented that the proportion of AIDS cases occurring in people of African decent surpassed cases among Whites. It took some time to pull myself together, but I did so with the help of brothas who were standing on the frontlines, waging war against HIV. A good part of the foundation I have as a warrior comes from Brothers United in Support (BUS), a program of Test Positive Aware Network here in Chicago, as well as from reading journals like Positively Aware. Flashing back, at that time I couldn't imagine seeing thirty. Now I'm looking forward to thirty-six.
It was in the seventh year of my HIV-positive diagnosis that another physician, after reviewing the results of a blood draw, informed me that I should consider HAART. I however decided to wait and see how my labs would turn out with the next draw. Over the course of a year I researched anti-retroviral therapies, and went power shopping for a holistic approach in preparation for what I felt was to come.
When the physician and I spoke again, my undetectable viral load without meds had skyrocketed and CD4 count had dropped significantly. We discussed treatment options and formulated a plan for my therapeutic armamentarium. It consisted of a HAART regimen of Viramune (nevirapine), Zerit (d4t) and Videx (ddI). Even with all of the research that I prepared myself with, due to fear, the pills sat on my dresser for a month before I decided to take them. They were the first thing I saw every morning.
Overcoming the fear of making the meds a part of my daily rituals was ultimately my greatest challenge. Popping pills would be a constant daily reminder that I was living with HIV. When I did take them, it was with breakfast. I got a large glass of water and began what was to become a daily ritual. I took the Videx, supposedly as having a wonderful citrus flavor, which must be taken on an empty stomach or at least two hours after eating. It tasted more like chalk to me. The food made me feel full, but the meds made me feel empty.
The first few weeks were like a nightmare turned into reality. I felt nauseated, especially after taking Videx. And my thought was that the meds were much too expensive to throw up and have to retake. This led to my not having much of an appetite and forcing myself to eat.
The most degrading aspect of this ritual was the diarrhea. Walking down the street, thinking you've got gas, defecating on yourself and being a long way from home. In my case, the humiliation was intensified because I had to take public transportation home after the incident. I cursed the damn meds that were supposed to help me in this battle and prolong my life. I also cursed the cruel creature at the root of the problem -- my ignorance of so many years ago about HIV/AIDS.
After what felt like an eternity, I made it home. I peeled out of my clothes and cried during my two showers. I called my brothas from BUS for advice and much needed support. I was informed that my body needed to adjust to the meds, and that the symptoms I was experiencing were the casualties of war; that they were probably related to Videx and would or should pass. [Editor's Note: The new formulation, Videx EC, eliminates the diarrhea problem.]
By the third week of taking meds I couldn't take the side effects any longer. I phoned my physician. We had an emergency appointment to talk about new treatment options. I was cautioned that once beginning anti-retroviral therapy it must be strictly adhered to, otherwise it could possibly lead to HIV mutating and developing resistant strains. The good thing is that I have always made a point of having open communication with my physicians and chose to be proactive about my healthcare as I battle HIV. I received a new prescription for Epivir (3TC) to replace Videx. By the end of the week, I started coming back to focus. My appetite returned and the other side effects dissipated.
I still follow my rituals with my regimen, adhering to the daily dosing regimen until there is a cure for HIV/AIDS and we're still nowhere near a cure. After living with HIV for the past 11 years I seem to be managing very well for now, and haven't had to change my regimen. However, there is always an amount of anxiety that I experience after bloodwork to determine my CD4 count and viral load. Every three months my mind fixates on what the magic number will be this time. There are still times that I dread going to my medicine cabinet for my evening dose or packing my meds for the next day.
More so, I cringe when I hear that people think HIV/AIDS is over, or worse that it's a "manageable disease." The miseducation of our youth, the exploitative anti-HIV drug ads, and an absence of accurate media coverage of HIV/AIDS reinforces this way of thinking. Yes, HIV positive people are living longer lives, and the progression to AIDS has slowed. However, the reality is that the rates of new infection are growing celestially, especially among people of color. And yes, people are still dying from AIDS (3 brothas from BUS, including founding member Michael J. and 7 TPAN members were lost in 2000).
People are living longer because of biomedical research of HIV and anti-retroviral therapy that has advanced tremendously since the dark eighties (1980s). What I have learned about my daily rituals with my regimens is that you need to be prepared and focused. You've got to be a fighter in order to survive. You owe it to yourself to do some research and actively participate with your physician in your healthcare management. If there's a safe space where you can talk to other long-term survivors who practice daily rituals with regimens, treat yourself to their stories. Some of those warriors have many battle scars and helpful tales of survival. There is life after diagnosis. It's a battle, but isn't any life a battle to some degree?
Sanford Gaylord is a member of Chicago's premiere lesbigaytrans performance group A RealRead, and a columnist for BLACKlines.
This article was provided by Test Positive Aware Network. It is a part of the publication Positively Aware. Visit TPAN's website to find out more about their activities, publications and services.