Image: Tanya Torres
Like that of any freshman, Tanya Torres' bedroom is filled with posters of teenage idols, dolls and animal figurines.
By
Special to msnbc.com
updated 11/4/2003 2:53:41 PM ET 2003-11-04T19:53:41

Being a teenager is notoriously difficult. Fierce social and psychological pressures impel adolescents to fit in, to break free from parents, to navigate through temptations like sex and alcohol. For teens with HIV, the journey can be even more complicated. They face the challenge of preparing for an adulthood they were never expected to reach. In our special series, MSNBC offers an in-depth look at four teens living with HIV.

Tanya picked up the microphone, jabbed at the record button with her finger and launched into the first installment of an audiocassette diary of her teenage life. In the background her favorite pop band, N’SYNC, thumped away on a boom box.

“Hello?” Tanya said uncertainly into the tape. “My name is Tanya Torres. I’m 15 years old and I go to high school at New Symrna Beach High. I’m a freshman and I’m HIV-positive. I got it from a blood transfusion when I was born, and since then my life has been just a little bit different than others.”

Different, indeed.

Tanya was gravely sick from the day of her birth. But doctors didn’t diagnose her HIV disease until she was five. All they knew was that the little Edgewater, Fla. girl got sick a lot.

“She was in the hospital almost monthly,” says Tanya’s mother, Brenda. “They told me when she was a newborn that she would never leave the hospital. She left the hospital when she was 3 weeks old. When you find out you have AIDS, they tell you not to expect to make it two [more] years. And she passed that. And then the experts told me should wouldn’t make it to 10. And now she is 15.”

“And a half,” Tanya adds, instructively.

“And a half,” Brenda replies. “Oh, pardon me.”

Little was known about the AIDS epidemic when Tanya was born in the early 1980s. There was no definitive test for HIV, so thousands were walking around unknowingly infected. Moreover, doctors didn’t know that it could take years for HIV infection to develop into the fatal disease, AIDS.

Meanwhile, thousands of HIV-infected couples gave birth, often passing the illness to the baby. Other children were infected through transfusions with tainted blood products.

At first, doctors expected youngsters with HIV to die in childhood. Most did. More than 13,000 Americans under age 24 have died since the AIDS epidemic struck in the early 1980s, according to government statistics.

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But then anti-viral drugs like AZT and protease inhibitors were introduced, helping thousands of youngsters to stay alive. Now, it’s estimated that there are more than 10,000 Americans under 19 living with HIV or AIDS.

Virtually all children who get HIV today are born to mothers who are also HIV-positive. But before doctors started testing donated blood for HIV — a precaution begun in 1985 that is widely credited with making the blood supply generally safe — Tanya received a tainted transfusion during childbirth. She spent years taking experimental anti-AIDS medications, and was part of a leading HIV study at the National Cancer Institute in Bethesda, Md. Lately, her health has been stable enough that she’s off the anti-viral drugs.

Rolling through school
Tanya makes no effort to hide her HIV from schoolmates. But HIV makes teenage life — a period fraught with alienation, risky behavior and, sometimes, suicidal thoughts — much more trying.

On most days, Tanya holds court over her tight circle of friends at a lunch table in the high school cafeteria. They gossip about grades, school romances, television shows. Tanya prods her entrée with a fork and declares it a UFO — an Unidentified Food Object.

“Mostly the same people sit with the same people,” Tanya explains. On the social hierarchy, her crowd is neither venerated nor reviled. “We’re not the populars and we’re not the dweebs, so we’re in the middle.”

image: tanya on her bed
Tanya lies down on her bed while a home health-care nurse checks on her IV port.
Tanya has a ready, mischievous smile, dark eyes and thick, chestnut brown hair. She’s shorter and less physically developed than many girls her age: HIV slowed her growth. Tanya also has a chronic — sometimes painful — disease in her legs from taking an experimental anti-AIDS drug when she was younger. Much of the time she rolls through the school hallways in a wheelchair. In the self-conscious teenage world, a wheelchair is unwelcome social cargo.

“It scares boys off,” Tanya complains.

One recent afternoon, Tanya and her best friend, Abby, lounged around the house listening to music and plotting ways to get Tanya a date. Tanya lives with her mom in a small Florida town near Daytona Beach. Abby’s mission for the past several months has been to set Tanya up with a guy.

Tanya nudges Abby to call a boy she likes named Chris, to see if he’ll go out. Sadly, Chris is grounded until Wednesday. No phone calls allowed.

“Does he have a crush on me?” Tanya asks Abby hopefully, though her tone of voice suggests she knows the answer.

“No,” Abby replies.

“Figures. Why would he? Nobody has a crush on Tanya. She’s the AIDS-infected girl. Which isn’t true anyway, it’s HIV. But that’s okay…”

So far, Abby’s recruiting mission is a complete flop. The problem is, boys that Abby tries to snag for Tanya invite Abby out instead. Meanwhile, Tanya says she’s always being asked if you can get HIV from kissing. Scientifically, the odds are miniscule. And from Brenda’s point of view, kissing would be more dangerous to her daughter than to the boy, because of Tanya’s poor immune system.

“She gets a boyfriend and he’s got some kind of infection, even a bad cold, she’s gonna get it, if she’s kissing him. That’s gonna happen. She catches everything,” Brenda says.

Tanya interrupts: “And? I have to grow up eventually.”

Growing up positive 
Young children with HIV tend to be most upset by the medical aspects of their disease, such as going to the doctor all the time or having to take a lot of nasty-tasting medicines. Adolescents obsess over the social price they pay, according to psychologist Lori Wiener of the National Cancer Institute.

“For many of the kids, the fear of being rejected is so much stronger than the fear of dying from the disease,” Wiener says. “Many of the children have gotten involved in very high-risk activities. They felt that if I’m going to die of something, I’d rather die of something unrelated to HIV or AIDS so that nobody will ever find out what I have.”

Some teenagers, Wiener says, suffer from a kind of survivor guilt, because they’ve seen friends or family members die of AIDS-related illnesses. “One very eloquent young lady said to me: ‘I feel like I’m on a train, and everyone is getting off the train. They’re all off and I’m the last one on. And I don’t know when it’s going to be my turn.’”

Many health care workers now regard HIV as a chronic illness, rather than a terminal disease. But there is still no cure, and an early death is still the likely outcome.

As the mother of a girl infected with HIV, Brenda Torres never thought she would have the pleasure of maternal anxieties about teenage issues like dating and kissing. But Tanya’s years of taking anti-AIDS medications have paid off. Brenda is guardedly optimistic about Tanya’s future.

Relaxing with Tanya in their living room recently, Brenda said, “When she was five, it was ‘Let’s go pick out the casket, and what colors do we want, and where do we want her buried?’ Now it’s: ‘Where does she want to go to college? What does she want to be? Will she ever be able to have children? Will that ever happen? And is she going to be able to find a husband?’ That’s the kind of thing Tanya thinks about now.”

But with a mix of hopelessness and humor, Tanya laments the prospects for getting asked out. “There’s nobody! Nobody, nobody, nobody, that I know,” she whines. “Anybody I know I would not go out with because I know them! I’ve known them for years!”

Brenda replied in a soothing, mother’s voice: “You got a long life ahead of you kid. What’s the hurry?”

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.

© 2013 MSNBC Interactive.  Reprints

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