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Bright Faces
Full of Hope
Young
Speakers Tell of Their Lives with HIV
by Euan Bear
Burlington/St. Johnsbury – "I'm Dillon!" shouts the 15-year-old that Bonnie Cleverly is about to introduce me to. He's short, like me, and every time someone mentions his name, he sings out, "I'm Dillon!" Conversations around the room halt and the adults and youth gathered in the Vermont CARES Burlington office smile before they resume talking.
Dillon Card is from Phoenix, Arizona, and he has HIV, although his viral load has been undetectable for the past four years. Dillon met Bonnie Cleverly, now a senior at St. Johnsbury Academy, at Camp Heartland, a camp in Willow River, Minnesota, just for kids and young adults whose lives have been affected by HIV and AIDS (www.campheartland.org).
According to the camp's website, half of all new HIV infections are occurring in young people under age 25. "The St. Johnsbury area sent eight kids to Camp Heartland," Bonnie says, some of whom are positive, and some who are not but have family members who are.
With bake sales, car washes, and grants, Bonnie raised $10,000 to bring Dillon and two other Heartland campers – Marlena, from St. Louis, and Ashely, from Detroit, plus a chaperone or two – to Vermont to talk to other students about how their lives have been affected by the virus. The team had a rigorous schedule of speaking engagements in Caledonia County over the next three days, including middle and high schools and Lyndon State College. The tour could be depressing, but instead, it’s a "Journey of Hope." It's also Bonnie's senior project, and it hits close to home.
Bonnie's mom and dad were both diagnosed in 1985. Her dad passed away in 1993. She and her brother are HIV-negative. Asked how her life has been affected by AIDS beyond losing her dad, she says, "It's hard to imagine life without AIDS. My mom has lost two jobs because of her HIV status." Her mom now works for Vermont CARES, where her sero-status is not a job issue.
A big part of the Journey of Hope team's message is prevention, and part of that is "safer sex." But it's not always easy to be explicit when students are addressing other students in a formal setting. "Sometimes schools don't wish you to say 'condom,'" Bonnie explains, "so we just talk about the four fluids and putting a barrier between, and if you have questions, talk to a teacher or your headmaster. It's really important to get people to understand that you can't get [AIDS] through casual contact."
The four fluids are breast milk, semen, blood, and vaginal fluid.
Another part of the message is "to put a face to AIDS, so you can see the person it's affecting," Bonnie explains.
Those faces are bright and shining at the Journey of Hope reception at Vermont Cares in mid-November.
50 Speeches: Dillon
"I'm Dillon!" rings out again as a CARES board member steps into the room. Dillon Card was two years old when his mother died from AIDS. "We were both really sick when I was born. When they bought my mom's burial grave, they were buying mine, too," he says.
He has been under treatment almost since birth. "The treatment made me really sick, and then there was AZT, and that made a difference." Dillon says he's made 50 speeches about his story after spending a lot of time researching HIV and prevention on his own, but he's not public about his sero-status at his own school.
"I want to help kids who are ignorant. They're just not very informed," he says seriously.
He has been a bit afraid about dating girls, worried about being rejected when he discloses having HIV. Likewise he has chosen not to try out for any sports because he's afraid he would face discrimination. "I would never put someone else at risk of harm," Dillon declares.
Dillon, who says Phoenix is too hot and that he loves it here in Vermont because it's cold (and wearing a sweatshirt from the big gift bag each of the travelers received), credits Camp Heartland with giving him the motivation and support to speak publicly. "I don't know if I'd be doing this without camp."
Bright Lives: Marlena
Marlena Carreras is 16, was born in New York, and lives in St. Louis. Her adoptive mom got AIDS through a blood transfusion during a hysterectomy. Her younger sister was born with HIV, but has sero-converted to negative status.
At first Marlena says that the most important impact of the disease on her life was the blessing of going to Camp Heartland. "Just being with all those other kids who live with it as part of their lives... they are bright lives."
Then Marlena says, "My parents never had just a cold, it was always something serious. I have to have the bright face in our family. I try not to think about death too much."
Asked about guys and dating, she says with dignity, "I am dating guys, and it's hard to tell them my parents have AIDS because of the stigma. I know what I'm doing, I get all the questions asked that I need to and answered as clear as I can."
Prevention: Ashely
Ashely Ware tells me, "I've got your heading for you: I'm black, I was born with HIV, and I'm a lesbian." She's also 17, a senior, and bound and determined to go to college somehow.
Her mother died of AIDS just two years ago. Her dad died in 1989.
"I was living with my grandparents until my grandmother discovered I like girls. That's the thing that got her to make my grandfather put me out. I'm being raised by the village now," specifically her best friend, also a lesbian, and her best friend's mom.
"I'm content with who I am. I've always known I had HIV, and now I'm okay with it. I can talk about it to anyone. The lady next to me on the plane asked me if I lived in Vermont," Ashely relates. She explained that she was visiting to do some public speaking about HIV. “"And I just told her my story. It's nothing."
Ashely has also been dating, although her relationship recently broke up. Prevention is also a large part of her message. "HIV is preventable – there's no reason to contract it," she declares flatly.
"I've never worried about my health. My mom always made sure I took my medicine. Everyone's going to die, but I don't think I'm going to die soon."
To many readers, it will seem as though these must have been heavy, depressing conversations, but that would be a misapprehension. The room was full of excited adolescent energy. The kids who had been to Camp Heartland burst out in a camp song during the reception, clapping and bouncing slightly on the couch, big smiles shining forth. These are the faces of the next generation dealing with HIV. They are bright faces, full of hope built out of self-knowledge, inner strength, and community support.