Life and Death and HIV on Long Island: Lycia Davis
I grew up on Long Island and I spent most of my life there. When I was diagnosed with HIV in 1992 I didn't feel sick, but I was prescribed AZT. I was extremely nervous about taking it because there was such a negative stigma associated with HIV on Long Island. The information from AIDS organizations in New York City had not made its way out there. Many people still believed that HIV was a punishment for specific groups of people, like drug users and prostitutes. I had always heard horror stories about people dying from AIDS, and I personally knew at least 30 people who had passed away.
To my knowledge there are very few organizations or medical programs that provide services to people with HIV on Long Island. For example, one of the HIV programs that I attended was on the "infectious diseases" floor of a hospital. It was inevitable that when you stepped into the elevator in that hospital and pressed the button for the "infectious diseases" floor that someone would assume that you are going to that floor to receive HIV treatment. Not everyone in that elevator would know that the HIV programs were housed on that floor, but it was something I worried about. I also remember seeing people from my neighborhood in the waiting room at the hospital which caused me to worry if they would disclose my status without my consent.
Many of the organizations that served people with HIV did not offer much privacy, or the name of the agency made it clear what type of services they provided. Because it was not as easy for me to feel safe and somewhat anonymous at these organizations, I stopped going.
My husband kept trying to convince me that I wasn't positive, and that AZT was killing people faster than HIV, so I might as well stop taking it. I couldn't help believing what he said -- I was in a state of denial myself and I was using drugs. I stopped taking the AZT. At that time because I was healthy I thought I could just take my chances without meds instead of enduring the side effects of AZT. I also thought, in a twisted way, that if I didn't take my meds then I wouldn't have to admit that I was positive.
Even though my husband had convinced me that I wasn't positive, deep in my heart I knew that I was. I was just so scared of what that would mean for me. I remember sitting in the waiting room at the hospital waiting to see my doctor and noticing how so many of the other people in the waiting room had discolored skin. I couldn't help but think that I would begin to look like that after taking AZT.
In 1996, after a number of years without taking AZT, I developed a severe case of pneumonia. I needed thoracic surgery to repair my collapsed lung. I was in a great amount of pain and at death's door. After I made it out of surgery my doctor suggested that I have an HIV test. In the back of my head I already knew that I was positive, but I hoped that maybe my first diagnosis was a mistake.
So I traveled to Hempstead to get an HIV test for the second time, and I tested positive. At this point I finally admitted to myself that I had HIV. Soon after that -- after I found out that my CD4 count was 77 and my viral load was 55,000 -- my doctor prescribed Combivir. My CD4 count began to go up, even though one of my meds, Norvir, was horrific. It was only available in a liquid form in 1997, and the only way I could stomach the awful taste was for my son to force-feed it to me with a spoonful of chocolate Nutella.
At the time I was working in the health care field, but I continued to use drugs to get high. Then my husband became violent toward me. It was extremely difficult for me to feel stable while trying to keep a strict medication regimen, working full time, taking care of my son and a mentally ill father, and avoiding my abusive husband.
In 2000 my doctor put me on Sustiva and Truvada. This regimen was much easier for me, as it cut me down to one dose a day, which was a welcome relief. I also stopped using drugs in 2000 and have been clean ever since. Then in 2005 I began taking Atripla, and I haven't had any severe side effects with Atripla. Later that year, I came across a flier for a positive relationships support group and started attending. I met so many people who were living long, fulfilling lives even though they were positive. I didn't experience anything like this before and it gave me hope that there was life after HIV. I had finally come to terms with my status through the guidance I received from other HIV+ people that participated in these programs. The friends that I made gave me the extra support I needed to leave my abusive husband.
After I left him in 2006 and moved to Brooklyn I became a client at several agencies in the city and continued attending support groups for people living with HIV. While I was living on Long Island I only heard about people dying from HIV. Once I moved into New York City, I met so many people who were living long, fulfilling lives even though they were positive. The agencies that I began receiving services from provided me with endless support, along with new friends and peers to help guide me through life with the virus.
My son has been a guardian angel throughout my struggle in coming to terms with being positive. He found out that I had the virus when he came across some medical papers of mine, and has been at my side ever since. When I was in the hospital with pneumonia he took it upon himself to research what types of treatments were available for me, and he was only 17 at the time. He has been such a strong advocate for me over the years, and continues to support me on my journey to wellness.
Not only have I been able to take advantage of services by several organizations in the city, but I was given the opportunity to represent GMHC at the annual National Conference on African-Americans and AIDS. I attended several workshops and collected materials to bring back to the groups that I attend. I am thankful to be on my way out of a place of denial and on my way to a bright future that provides me with opportunities to empower myself while living with HIV.
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Lycia Davis was diagnosed with HIV in 1992.