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December 11, 2012

25 Stories: Just keep playing

When Ben was diagnosed with HIV in 1999, he was on the brink of death. By the time he went to the hospital for a cold that had gotten out of control, he was down to a mere 120 pounds and didn’t want to acknowledge the reality of what was going on. “I was there for six weeks and almost died,” Ben says. “I had the whole thing. I had pneumocystis pneumonia. I had Kaposi’s sarcoma. It was a long road to get better.”

Slowly—very slowly—he did get better. “It took me a really long time to become undetectable, like years,” he says. But for Ben, it was like playing a game where he just kept working toward his goal. “Just keep playing, keep playing, keep playing,” Ben’s doctor would tell him. Today? “I’m very healthy. It’s learning how to deal with it, learning how to know that you have it, but not live because of it. You live in spite of it,” he explains. 

Ben credits his personal will to live—and many, many medications—with the fact that he’s alive today. “I’ve seen so many people, so many good friends, who have passed away. They get it and they die. They give up. You don’t have to give up. I don’t ever give up on anything, and maybe that’s something that’s helped me.”

Then, a few years ago, Ben began to stay consistently undetectable. “It was like, guess what, we won. That was an amazing moment,” he says. “It’s so cool that I get to live with it. It’s not beating me, and it’s not going to as far as I know. I won’t let it. I do everything I can do so it won’t.”   

Ben admits it isn’t always easy. Some days, insurance and medications and phone calls and appointments are just too much, and the temptation to give up and be done is almost too much to bear. And then he remembers how far he’s come. “You can get through it, and you can get there, because I have, and I have nobody,” he says. “There was one point when I didn’t think I would be 48 years old, because back when I first heard about it, people were living for six months.”

He also feels hopeful about how far the disease has come in terms of treatment, medications, and supportive organizations like The Damien Center. “I have a really good life, and that’s amazing to me,” Ben says. “It’s really amazing to me that I’ve gotten to see so much of it happen. I want to see it end, and I really believe that I’m going to. I really believe that in my heart and in my soul.”