A dozen girls pressed against the window of the small-town airport to catch a final glimpse of their new teen idol. As he glided across the tarmac toward his plane, he turned and raised his hand in a final wave. The pilot asked, “Are you a rock star or something?” “No,” the kid answered sheepishly. “I was in town to talk about living with HIV.”
At 14, my son had done something that most adults living with HIV will never do. He stood in front of hundreds of his peers—in this case, teen peers—and spoke about his life with HIV.
He’d practiced his speech for days before the event. But it had been years in the making. At 5, he knew that he had a virus and that its name was HIV. I had taken a lot of flak from friends and family for telling him at such a tender age. “Let him have a normal childhood,” and “don’t burden him with grief,” they all scolded. But I was certain that the revelation would instill confidence as he grew older, even though I couldn’t offer them any proof that I had made the right decision.
As his big day approached, I reflected on my own first public disclosure, at the Vancouver International AIDS Conference, in 1996. It was relatively uneventful: no eggs on my car or red paint on my hotel door. I was determined that my son’s declaration would be equally well received. “I want to do this, Mom,” he said. He’d emceed school events, so stage fright wasn’t an issue. “But I’m still a little afraid,” he allowed, “that kids at my school will find out.” Together we reviewed the facts: The gig was 500 miles north of our suburban Toronto home, in rural Ontario. It was unlikely anyone there would know anyone who knew him. If he didn’t use his own name or have his picture taken, he further reduced unwanted exposure. I also reminded him, “You can back out anytime, even at the very last second.”
Arriving at the venue, we were told that he would speak to two groups of 500 high schoolers. He took a deep breath and, having recently sprained his ankle in a freak accident, hobbled on crutches up to the stage. He looked out at the packed auditorium and said, “Hi, my name is ‘Sonny,’ and I am here to tell you that I have HIV, but I am just the same as you.” I felt the immense pride of a mother and the glowing admiration of a fellow activist. Tears welled in my eyes as he talked candidly about taking “nasty-tasting medicine” and how he used to ask for a “chocolate milk chaser” to get it down. “I wish I could tell my friends at home,” he said, “but I am afraid they wouldn’t want to hang out with me.”
When it came time for questions, dozens of hands popped up. I braced for the first question—which, to my relief, struck a big blow for normality: “Will you have to be on crutches for your whole life?” a youngster asked. “I hope not,” my son replied. “I wouldn’t be able to play football anymore.” Some kids, perhaps naive to the stigma people living with HIV may face, showed their support, with comments like “If you were my friend and you told me you had HIV I would still want to hang out with you.” (I wondered whether their parents would agree.) Others asked, “Did it hurt when you got HIV?” and “Will you have to take medicine forever?” He answered them with the eloquence of a seasoned speaker.
After nine years of wondering and waiting, I finally had the proof I needed: Sharing his status with him early had paid off. “How long have you known you have HIV?” the final questioner wondered. My son looked around, thought for a moment, and replied with a shrug, “All of my life.”
Let’s Hear It for the Boy
Shari Margolese watches her HIV-positive son become a prevention rock star.
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