Living With HIV Since He Was Four Years Old

At the age of 18, Josh is more aging out of than aging into adolescence, but he continues to face issues that are characteristic of both these transitions.

Josh was born during the early days of the epidemic, in August of 1981. A hemophiliac, he experienced a brain bleed at the age of a year and a half and was given a blood transfusion. He was 4 years old when he tested HIV-positive.

His parents told Josh about his HIV status when he was 6. He already knew about his hemophilia and the limits that condition imposed on his life. He wasn't sick from the HIV, and it didn't seem that important to him then.

Josh didn't take any HIV medications those first few years. There weren't all that many drugs available then, especially for a child, and his mother did not want to dose her son with a lot of toxic substances. In addition, his stepfather (Josh's parents had divorced when he was 3) was a holistic practitioner who treated Josh with herbs, supplements, and vitamins.

Then, in 1990, at the age of 9, Josh became very sick. He was bedridden for three months, and his parents took another look at HIV meds. Josh started taking AZT.

That summer, he was accepted into a research program at the National Institutes of Health. He spent ten days at NIH on his first visit and wound up taking AZT, ddI, and 3TC for the next two and a half years. His T-cells went up.

But his weight didn't. He stopped growing and stayed at 80 pounds for two years. Finally, to the displeasure of the doctors at the NIH (although they let him stay in the program), Josh's parents took him off the toxic medications and his stepfather resumed treating him.

Since then Josh has been on and off any number of HIV meds, including protease inhibitors and IL-2. Currently his viral load is undetectable and his T-cells are in the 600s.

But the medical saga tells only part of the story. While all this was going on, while the double whammy of hemophilia and HIV has been dictating the shape of Josh's life, he has been trying to negotiate the journey from childhood through the preteen years and adolescence to young manhood.

When Josh speaks about his life with HIV and hemophilia, it is without self-pity. Indeed, he faces these ongoing challenges with grace and courage, even optimism. But it hasn't been, and isn't, easy.

Josh describes his early years as lonely. His HIV status was a secret from everyone except his family and his schools until he was 12 years old. Nevertheless, he doesn't feel he was treated fairly. One private school refused to admit him because of his health problems, and he was over-protected in public school. At least in part because of his hemophilia he wasn't allowed to play sports. He says today that he had trouble relating to people, that he needed attention but had only one close friend.

Things started to change -- not always for the better -- when Josh was 12. He had wanted to make his HIV status public, but his mother had resisted. Finally, in the face of a rumor, she capitulated, and the people around Josh learned that he had the virus. The revelation cost Josh his best friend, whose father broke up their relationship when he learned Josh's status.

But Josh had gone public, and gradually he became very public indeed. He appeared on The Phil Donahue Show and became a public speaker going around to schools talking about HIV. This resulted in something of a social breakthrough for Josh, who was soon to enter high school. Among those who heard him speak were about fifty students from the high school he would attend. When he got there, these students treated him like a younger brother. For the first time Josh had a social life, with invitations to birthday parties and movies, kids to say hello to in the hall.

These friends have graduated now, but Josh continues to work as an AIDS educator among people his age. He recounts with pride how a young man in a recent audience told him that he was going to think twice about having unprotected sex, and he says that the positive attention he is receiving is "wonderful."

And then there's the issue of being responsible for his own health. Like most teenagers, Josh at times has rebelled against the rules that he has been expected to live by. In his case, he began to feel that he didn't want to take his medications anymore, that the responsibility was too great. Nevertheless, he says today that he never skipped a dose on purpose, that his parents' message that it was the medications that kept him healthy had been imprinted too firmly on his brain to let him do that.

Today, as he turns 18, Josh is faced with even greater responsibilities. He has stayed in the NIH program, and his next visit will be the first time he is not accompanied by his parents. Because of his health problems, Josh is somewhat behind in school, and is just entering his senior year of high school. He is planning to go to college, when he may live away from his parents for the first time.

And he will be leaving behind some valued supports. For several years he has attended special summer camps, including Paul Newman's renowned Hole-in-the-Wall and Camp Heartland, but as a young adult he will no longer be eligible. Even the NIH program, although centered around the fact of his HIV, has been an enjoyable part of Josh's life, offering beautiful accommodations, an opportunity to meet people from all over, and unlimited use of their WATS line to stay in touch and share strategies for living. But the NIH program is for young people age 13 through age 19, and soon Josh will lose this constant in his life.

But meanwhile, this August Josh joins other HIV-positive teenagers on a trip to Idaho . . . to go whitewater rafting on the Salmon River.

Back to the August 1999 Issue of Body Positive Magazine