By Susan Levine, The Washington Post
Washington, Monday, January 21, 2008 — For nearly a quarter-century they have come to the first floor of Children's Hospital: teenagers infected through circumstances, always tragic, or through choices, admittedly bad ones. More than 30 new cases in 2007 alone, as the epidemic that is HIV and AIDS extended its reach through a second generation of adolescents.
Fears of ostracism have kept them largely silent elsewhere. As patients, however, they've been urged to talk. Not just about their pasts, but about living and dying and coping with the possibilities of both.
Encouragement was all they needed.
"Before I told anyone, I felt like I was in a box," one teen says. "I couldn't sleep. I was like, 'Who can I tell?'"
"I went to school and no one wanted to learn anything," a girl recounts. "It was, 'She's got AIDS, don't touch her.'"
"I believe that I am going to live a long life," another allows. "I believe I have a purpose, and the purpose is to help youth do something."
These are the voices that psychologist Maureen Lyon and physician Lawrence D'Angelo have woven into "Teenagers, HIV, and AIDS," perhaps the first text on the subject to place young people, in prose and even poetry, alongside the experts. It is a true collaboration, one that gets and gives plain-talk advice.
Most of all, says Adam Tenner, executive director of the local advocacy group Metro TeenAIDS, it is a book that helps "bear witness."
"Too many young people are frightened to talk about their own HIV, or the HIV of their friends," Tenner says. "One of our biggest obstacles to healing our communities is getting rid of the stigma."
Lyon and D'Angelo explained their rationale in the book's dedication, a tribute to the more than 400 HIV-positive patients for whom they and others on the Children's staff have cared.
"They have served as teachers to us all," the longtime clinicians wrote.
With new infections occurring with increasing frequency among 13- to 19-year-olds, thousands of adolescents across the country are receiving diagnoses every year. The shattering results must be followed by compassion and very tailored conversation, according to the book, for every aspect of HIV can be different in these cases, from the virus' progress in the body to the services available to a suffering teenager.
"Managing a life-threatening and socially stigmatized illness is emotionally difficult and challenging for adults," one of the contributing authors noted. "It is even more difficult for adolescents, who are more vulnerable and less prepared to deal with a health crisis of this magnitude, much less deal with it alone."
The book addresses the host of medical, treatment, disclosure and support issues. Beyond teens, it's aimed at health-care providers, who often don't listen well to adolescents; at school leaders, who in many systems still provide minimal education on sexually transmitted diseases; and, of course, at parents. Both Lyon and D'Angelo have comforted teens who've been kicked out of their homes after telling their families.
The hospital became a major nexus for HIV and AIDS care. Its Burgess Clinic, with around 160 cases, is one of the largest such programs nationally.
The arc of the disease is reflected in Children's current patients. Three-fifths were born to infected mothers, a proportion that is waning because of the availability of medications to block any viral transmission during and after delivery. The remainder, both male and female, put themselves at risk through sexual behavior. And the makeup of that group is shifting: Girls have gotten smarter, and safer, whereas HIV among gay males is rising dramatically.
"There's a whole new cohort that has to be educated," Lyon acknowledged.
For Carl, a slim college sophomore from the Maryland suburbs, it's too late. Like many adolescents who are positive, he never thought it would happen to him. Carl wasn't that knowledgeable about the virus, but he knew that his sexual hookups could be dangerous. He put off an HIV test for a couple of years. His ignorance kept his fears at bay. Then he got sick during his senior year of high school and no longer could avoid them. He was 17.
He was at Children's when the doctor gave him and his mother the news. It was Jan. 13, 2006 -- Friday the 13th, he said with a small laugh, "what a horrible day to find out." What made it worse: "My mom was just as ignorant on the subject as I was. So when we got home, it was a circus. … She made me eat off of paper plates, eat from paper products." For several months, she ordered him to bleach the tub after he bathed. His clothes were washed separately from his siblings'.
It took Carl more than a year to come to terms with his status: "I used to have pity parties for myself. You know, that was the hardest part. I would have a weekly pity party, where I would go and I would sob and it would be sob, play the blame game, feel sorry for myself."
Finally, he asked himself, "'Am I gonna let HIV define who I am as a person?' And I said to myself, 'No, no, I'm not.'"
He's been helped by generally good health and the support of a sibling and a few close friends.
"I've really become one with who I am," Carl said. "I've embraced being HIV-positive."
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