For the thousands of American teenagers with HIV, life can be far more complicated than it is for the average adolescent. Those who got the disease through risky behavior — sex or intravenous drug use — are often living at the margins of society, with little support and limited prospects. Some are AIDS orphans, having already lost their parents to the disease. In part two of “The Positive Life,” a Chicago teen describes the toll of HIV on her family — and on her dreams.
In her family photo album, Tenisha* can see the all-consuming curse — and the few unexpected blessings — of a life with HIV.
There are the snapshots of her mother, Donna. The resemblance between mother and daughter is startling. But the pictures also show Donna emaciated and exhausted, before AIDS finally killed her at age 29. Donna used drugs; she got HIV from sharing contaminated needles. Donna passed the disease to her unborn child, Tenisha.
“She was doing drugs but she didn’t know she was pregnant until she went to the doctor,” Tenisha says. “If she knew she was pregnant [at the time], she wouldn’t have done drugs.”
Tenisha was seven when her mother died.
Tenisha is not alone. Youngsters born with HIV frequently grow up in unstable households, burdened by parental drug use or poverty. In some cases, children with HIV have lost their parents to the disease. The Pediatric Aids Foundation estimates that 30,000 American children are orphans to AIDS.
With the success of anti-AIDS drugs and with better treatment of HIV disease, a growing number of children, such as Tenisha, born HIV-positive are living to become teenagers and young adults.
Pictures from another family gathering remind Tenisha of the relatives who subtly avoided her when they found out that she, too, had HIV. One relative discouraged Tenisha from visiting her house. Another relative wouldn’t let Tenisha hold her baby.
“I was almost ready to cry,” Tenisha recalled, “but my sister told me not to cry, because they’re just ignorant. Now I don’t pay it no mind.”
A protective family
But others are supportive. The photo album also portrays a large and loving extended family. Tenisha’s grandmother, Esther, is raising her now, in a Chicago house packed with relatives. Her father lives in a public housing project across town.
Tenisha is tall and strong for a 13-year-old, with long limbs and wavy black hair that tumbles down her back. Her legs are covered with the nicks and bruises an active girl gets. For a person with HIV, her health is good. Tenisha’s never been stricken by a life-threatening infection.
As she grows older, Tenisha’s natural, teen-age impulse for rebellion is beginning to simmer. “Tenisha loves to get her way,” Esther says, chuckling. “Sometimes I think she can run me. And when I stop her doing something, she gets so upset. But then she knows she got to do what Mama say.”
Tenisha says some people call her a tomboy, because she gets along better with boys than girls her age, and likes to wear masculine-looking clothes. Esther fusses when Tenisha plays rough or carelessly.
“Sometimes I think my Grandma is just a little to protective of me,” Tenisha says. “I told her, ‘Hey Grandma, I’m big. I’m not your knee-cap size any more. I’m almost tall as you. I’ll be a teenager in a couple more weeks. And you’ll just have to get used to me out and playing and falling.’”
Esther grows especially concerned when her granddaughter bleeds.
“When I get a cut my grandmother gets gloves and bleach to clean up with,” Tenisha says. “And sometimes that does offend me. She acts like it’s so dangerous, like if she touch it it’s gonna kill her. I understand that the virus I have is dangerous and that she doesn’t want it. But I don’t like it.”
Experts on HIV say the families of children like Tenisha sometimes focus on making their lives as happy and unburdened as possible, assuming that the youngster will die before reaching adulthood. “Many of the parents never anticipated that their child would be living an independent life,” says Lori Wiener, a child psychologist and HIV specialist at the National Cancer Institute in Bethesda, Md. “As a result they didn’t place the same expectations on these children as they did on their healthy children. So these kids never really learned the skills that they need to make independent decisions.”
In other situations, children with HIV gain too much independence too quickly. Cathryn Samples, a pediatric AIDS specialist in Boston, knows youngsters with HIV who have either lost parents to the disease, or have had to care for parents who became debilitated, even demented, by AIDS. “Very few diseases hit the entire family the way HIV infection does,” Samples says.
Planning a realistic future
Aunt Bernice, Donna’s sister, is helping to raise Tenisha. Bernice does what she can to guide her niece through the turbulent transitions of teenage life. “One day she wants to be a little girl, the next day she wants to be a young lady,” Bernice says. “But she’s still a girl.”
Bernice urges Tenisha to work hard in school. Sitting with Tenisha in the living room, Bernice counsels her to prepare for the future, not for death. “We have to plan for you to grow up,” Bernice says. “For you to be able to be responsible and take care of yourself, the only way you’re gonna do that is to learn like all the other kids. I have to stand fast in the belief that you will grow up to be a young lady.”
Samples endorses such a view. “We have seen a huge change in the longevity of these kids, not for everybody but for many of them,” she says. “So I think it is realistic to really offer them a sense of hope in the future.”
Still, Tenisha knows there is no cure for HIV. Her ambitions are modest. “I hope I live a long time,” she says. “My goal is to finish high school. I want to get a job when I turn 16. I want my grandma to start a savings account for me. And I want to get a car.”
Last fall, Tenisha celebrated her 13th birthday. “I thank the Lord that I wake up every morning and can walk and talk and hear, and run and touch and play and feel just like everybody else.”
*Names in this story have been changed to protect the family’s privacy.
The Positive Life was produced by American RadioWorks, the national documentary unit of Minnesota Public Radio. The project was produced by Stephen Smith and Stephanie Curtis. Special thanks to Joe Richman of the American Diaries radio series.