Teens Living with AIDS: Three People's Stories

HIV-Positive Teens Tell Their Stories

"It won't give you X-ray vision, but it will make you a hero tonight," proclaims the subway ad showing a picture of a rubber. Then there's the continuing subway saga of the Spanish characters who are having sex; the mousey one who wants to go slow versus her friend, the stereotypical hot mama dressed for speed.

So why are 85 percent of sexually active teens not using condoms? They ride the subways, don't they? They learn about AIDS in school, right? It's the same old problem; no one wants to talk about teens having sex. The students I interviewed were receiving AIDS education in health class, but said that being told the statistics of AIDS cases has no meaning. They need to see teens with AIDS, hear their stories, to realize, 'Hey, that could be me.'

That's why a group like YouthWave exists. Members of YouthWave are HIV-positive young adults. They tour the country, visiting schools and telling their stories. Their presentation is so effective that students are racing out the door to get tested by the end. They have to run faster than their teachers, who are even more scared they might be HIV-positive.

Stan's Story

Ann's Story

Missy's Story

For More Information

YouthWave and various branches of the Association of People With Aids have speakers available to educate at schools. Or you can contact an AIDS agency in your community and ask if they have a speakers' program.

You can contact YouthWave in California at (415) 647-9283 or write to: YouthWave,
3450 Sacramento Street, Suite 351
San Francisco, CA 94118.

Missy is a speaker for the National Association of People With Aids, headquartered in Washington, D.C. For speakers, contact:
Keith Pollanen at (202) 898-0414 or write to
1413 K Street NW
Washington, D.C. 20005

CDC National Hotline: 1-800-342-aids

San Francisco Aids Foundation: 1-800-367-2437

Mellisa: (in photo right) is a 21 year old board member, omens AIDS Network. Eleven months ago Mellisa learned she had HIV. She's since become a national spokesperson for young people with HIV.

The ARRIVE organization in Manhattan can be contacted at 151 W.26th Street, New York, NY 10013 or by calling (212) 243-3434.

CREDITS: Couple photos by Daniel Hayes Uppendahl (daniel@kspace.com) "Mellisa" Photographed by Annie Leibovitz for San Fransico Aids Foundation

STAN

Stan was the baby-faced one in the group, the youngest at 19 years old. In August of 1989, he spent his summer days like many other 13-year-olds, with the fluttered stomach that comes from first love and knowing you're about to start high school.

Late that summer, red spots started appearing on his skin and he was tired all the time, as if he had mono. A few weeks later, he started high school feeling healthy. He went for a routine physical that winter so he could join the swim team.

That's when he learned he was HIV-positive.

"At first we thought there must have been a mistake, the test must have been switched," Stan said. "So I took another test and that one was positive, too. I told the woman I'd been dating, who was much older, and within 24 hours she was gone. I never heard from her again.

"I started getting really angry that at 14, I had this life-threatening disease. I had dreams about going to college, making money. But how could I plan for college when I didn't know if I was going to live another year?"

Stan didn't want his life to change. He wanted to worry about the same things his friends worried about, like girls and sports. He was scared to tell people he had the HIV virus because it was a conservative community and he'd heard about people being beat up in other towns. When he told his friends the news, most of them didn't even believe him. He eventually found understanding by joining a support group for HIV-positive teens.

"Joining that support group was the best thing I could have done," the 19-year-old said. "The next best thing I did was to leave school during my junior year. It was holding me back."

He earned the equivalent of a high school degree and began taking courses at a nearby college. He also journeyed to other countries -- something he'd always wanted to do. This summer Stan will travel to Greece and the Middle East.

"I'm planning on living through this thing," he said. "A couple of years ago I had this five-minute flash into the future. I saw myself at 35, thinking, 'Look at all that has happened. Back when you were 16, you thought you were going to die.'

"Lately, I've been thinking about the deeper meaning of this virus," Stan said. "I've been thinking about the fear it brings out, how people are afraid of anyone who's different. This disease has taught me that we're all human beings. What religion you are, what color skin you have is really irrelevant when it comes to the big picture.

"And just because I'm HIV-positive, who am I to think my problems are any worse than anybody else's? I could live in this space being angry or I could say, 'What can this teach me? How can I turn this around?' Not that there aren't days I'm angry - but I turn that anger into fuel to live."

ANN

Like Stan, twenty-one-year-old Ann of Manhattan contracted the HIV virus through her first sexual experience two years ago, when she was engaged to be married. She wanted a career and was attending college while working at a daycare center. She and her fiance felt ready to have a baby.

She strikes me as an articulate, strong-willed young woman -- a survivor. Like the other young adults interviewed, she has managed to pull something positive from her experience.

"I couldn't get pregnant and I went for tests to find out why. That's when I learned I was HIV-positive," Ann related. "When I told my fiance that night, he accused me of lying. He left, saying he was going to the store for cigarettes. By the time the sun was coming up, I realized he wasn't coming back."

The HIV test results and her fiance's desertion pushed Ann into a depression so deep she spent four months cocooning in bed. She had a serious case of what she calls "the recently-diagnosed flu."

"I would get up to shower and go to the bathroom," Ann said. "I'd go out just to get food and go to the doctor." She was fired from her job. It took three months before the lights and phone were cut when Ann couldn't pay her bills. After four months of not paying rent, a housing authority came to evict Ann from her apartment.

"But before I moved out, an agency sent a case manager over and she was a really positive influence on me," Ann said. The case manager encouraged Ann to attend classes run by ARRIVE (Aids Risk Reduction IV drug use and Ex-offenders). ARRIVE helps those with HIV find jobs and deal with the disease.

"But the people in my group were all older," she said. "I started to feel like the only HIV-positive 20-year-old around."

So she founded her own group under the ARRIVE umbrella called the Young Adults Group for HIV positive heterosexuals between the ages of 16 and 21.

"Everybody's dealing with it from the prevention angle and I wanted to deal with it from, 'Okay, I'm 16 and HIV-positive, where do I go from here?' We talk about our lives, or future, jobs and going back to school. And we do things together. I no longer went to movies and dancing with my HIV-negative friends because they wanted to go clubs and pick up guys. In our Young Adult Group, we have sleepovers and go ice-skating and stuff," Ann said.

She is dating now, something she didn't do before she met her former fiance. Whether she tells the person she's dating of her HIV status depends on two things: How will he deal with news? And are they going to be sexual partners?

"If we're going to be sexually active, I tell the person. I believe they should be able to make educated, informed choices," Ann explained. "I never have unprotected sex. I take care of my condoms like they were my children. They're kept in a basket by my bed and I even dust them."

Being HIV-positive has made her a stronger person, meaning she doesn't need a relationship to feel complete. "I'm more stable emotionally to carry on a relationship. I used to look for another person to make me whole," she said. "Now I'm whole myself. You can't look for someone to complete the puzzle for you, you have to complete it yourself.

"Although this is the worst possible thing that could happen to anybody, it's not the end of life. You can still lead a productive life in between doctor visits," she laughed. "I think about all I've accomplished in the past year; I got a promotion at work, I'm dating and will be going back to school. It's made me want to do a lot more, made me stronger, made me achieve more and be more focused. It's been a major self-esteem booster, which is odd. It's also made me care more about myself and younger people."

"I don't know how long I'll live. I don't see myself rocking on the porch with my 90-year-old husband and grandkids running around calling me Nana, but I do see myself 10 years from now," Ann said. "I see myself happily married at 35, going to the mall with my girlfriends, talking about the latest Denzel movie.

Ann calls herself a realist and says she has no illusions that a cure for AIDS will be found.

"The only way I see AIDS stopping is if people protect themselves. There's so much doctors don't know. It's like chess - nobody's a king, no one's a queen, you're just a pawn."

MISSY

Thirteen-year-old Missy Milne of California contracted the HIV virus from a blood transfusion she had as a baby. Her parents knew she was HIV-positive since Missy was five but waited to tell their daughter.

Missy is soft-spoken and seems naive about the full ramifications of being HIV-positive. Or else she has fully accepted her condition and refuses to let it control and alter her life. She seems to view her bimonthly doctor visits and medication as merely an interruption in the routine of her typical 13-year-old life of video games and dating.

"My parents told me when I was nine. We didn't want to tell my friends right away," Missy explained. "We wanted to educate them first because if we didn't, we thought I'd get teased."

"For four and a half years we were very silent," Missy's mother Joan said. "We lived in a dual world. We were afraid that when we went public, the car tires would be slashed, the doors would be spray-painted. But we haven't had one negative incident."

Missy's friends "treated her the same as always" and her (former) boyfriend had "no problem" with the disease either. "Sometimes when I think about boyfriends, I want the virus to go away," Missy said. "Because when you're older, some boys might not want to get involved with you because you can't ever have sex without using a condom. "

For Missy, what's good about having the virus is that she gets to meet famous people. She's spoken to John Stamos on the phone and once met Hillary Clinton. She worries about dying "only sometimes, at night." Sometimes she gets mad at God for giving her the disease. But the hardest thing has been watching her friends die.

"Missy said to me, 'Mom, how come all my friends are getting sick and dying and I'm not?' " Joan recalled. "She said, 'I feel like I'm on a train and each one of my friends is a car and I'm the last one.' "

Missy and Stan shoulder the pain of telling their stories to strangers in the hopes of saving at least one person. Stan knows that the message in health class isn't hitting home, because he was a teen who thought of AIDS as something that only affected older, gay people. Meanwhile, AIDS continues to be the sixth leading cause of death among 15-to-24 year-olds and the number of teen AIDS cases doubles every 14 months. According to Dr. Karen Hein, an expert on adolescent AIDS and HIV, teenagers are the next wave of the epidemic. "Many kids find out they are HIV-positive through pregnancy," Dale Orlando, former director of the Fenway Health Center in Boston, has been quoted as saying. "Parents aren't educating their children about the risk because they still view it as a disease of somebody's else's kids. It isn't."

"Nobody wants the schools taking charge of their kids' sexual life," Orlando said, "and that is the way condom distribution is perceived. Everybody sees it as licensing kids to have sex. What they don't seem to understand is that kids are having sex. And now they're dying from it."

Ann advises female teens to buy their own condoms and learn how to put them on a guy.

"And be sure of yourself," she warns. "Just because he says he loves you doesn't mean he's going to be there when you're in the hospital. Find out if this is really what you want. Young people believe they're invincible. But the only person who can save you from this disease is yourself."

"I realize that abstinence is not everyone's choice," Stan says. "But if you're going to have sex, learn about safe sex and practice it all the time - not just some of the time."

next: Introduction to HIV