Ben

Ben's picture

Positive since 1992

I am one of three kids in my family and the oldest of three boys. I grew up in Harrison, NY, in Westchester County. I went to school at Harrison High and then on to Boston College. I loved being in Boston so, after I graduated, I stayed there for a number of years. I then moved back to NY where I have been for 35 years in the town of Poughkeepsie, in Dutchess County.

I found out that I had AIDS back in ‘93. I started feeling like I had the flu and also had three spots: one on my shoulder and two on my chest. My job had me traveling and I was working long hours at the time. I finally went to see my doctor who told me I should consider having an AIDS test done. He told me the results of my test would be back in two weeks. I went back to his office two weeks later. When I went to check in, I noticed something funny--all three of the nurses would not look at me at all when I was talking to them. When it was my turn to see the doctor, one of the nurses brought me back to his office. I noticed she was crying and then she gave me a hug. I had a feeling something was up with me. When the doctor walked in he said there is no easy way to tell me this, but that my test came back HIV positive. Once he told me that, I did not even hear anything else he had said, I just felt the tears running down my face. Once I composed myself, my doctor said he wanted me to see another doctor who knows about HIV, since I was the first case he ever had. When I left his office, I must have cried most of the way home. I kept on thinking, “How am I going to tell my partner?” Just thinking about how he will handle it: will he break up with me or will he throw me out? And then there was family--what they would say and do to me. I am so lucky I have the partner I have. All he said to me is, “We will get through this.” And my family said the same thing. The first thing we had to do was get my partner tested. When his results came back, he was HIV negative, which took a lot off my mind--knowing that he was not infected. The next thing was to see the specialist who handles HIV for my county. The doctor took one look at me and said that he wanted me in the hospital right away. They ran a lot of blood tests, one of which was a CD4 count. When I came back, the doctor said I had the lowest CD4 that he had seen: my CD4 count was 4.

The obstacle that I came up against was, one, my lack of knowledge of HIV. The second was how and whom do I tell that I have AIDS. It was still only 1993 and there was a lot of hate, so I had to think hard about it. But I decided to be open about my status. It's funny when I do tell someone, especially when it comes to friends. People who I thought would stick with me walked away and were never to be seen again. But the ones who I thought would leave turned out to be very supportive to me.

When the doctor told me my CD4 count was only 4, he also said to me that if I hadn’t gotten tested when I did, I would have been dead. The meds that I was on were crazy. Remember, it's 1993 and the cocktails of drugs were not out until later. So I was on high dose of AZT that made me sick, but I stuck with it. When the cocktail of drugs came out, even they made me sick. It took, I'd say, six months to tolerate them; but thank God for them. Slowly, but surely, my CD4 count started to come up again. I stayed with that doctor for about 15 years and then I changed doctors. The reason for the change was that I wanted to be with a gay doctor. I just wanted someone one who made me feel comfortable, because I am also gay. He has now been my doctor for the past seven years and I have been very happy.

I have been active in advocating for persons living with HIV/AIDS for the past 20 years. As a person living with HIV/AIDS, I have used my own personal experience to help others overcome the challenges of living with HIV/AIDS. Through my work as a peer adherence educator, a public speaker, and my recent project, UPWORDS Voices, I have also increased community awareness around HIV/AIDS and provided education and support to other people infected and affected by the virus. I have spoken with teens at local high schools and facilitated young, HIV positive MSM groups as the past chair of the Dutchess County HIV Health Services Planning Council. After four years of perseverance, I have seen my vision of a web-based "living quilt" become a reality. UPWORDS Voices (www.UPWORDSvoices.org) is a virtual quilt telling the stories of individuals infected and affected by HIV/AIDS. It provides information and resources, but more importantly, it instills hope--hope for support and acceptance, a cure, an end to stigma through connections to others and accurate information. What started out as a Hudson Valley project has quickly spread to include people from several states across the nation, and, more recently, South America, Canada and Australia. I have worked endless hours to unite, empower, educate and celebrate people living with HIV/AIDS.

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