HENRY NICOLS WAS BORN WITH HEMOPHILIA. Over the course of his life, the 17-year-old high school senior and Life Scout from Cooperstown, N.Y., has had over 300 bleeding episodes requiring transfusions. It was from one of those transfusions that Henry caught AIDS.
When he found out, he bore the news stoically. “I was 13, and I didn’t really know that much about AIDS,” says Henry, who has completed the requirements for scouting’s highest rank, Eagle Scout. “I had lived with hemophilia, which is a life-threatening condition, so in a way another disease didn’t really faze me. Besides, I felt fine.”
Then, last December, his father Hank, 41, decided to have a heart-to-heart talk with Henry. He took him to an empty field next to their clapboard house and there, sitting together on some rocks. Hank told his boy about the doctors’ estimate that he probably only had a few years to live. Henry said, “That sucks,” and he started to cry.
Within weeks, though, he began searching for something more positive to grasp hold of. He decided to go public with the fact he had AIDS. In fact, he hoped to use the disease as the final requirement for achieving the rank of Eagle Scout. Talking openly about his illness as his project for the Eagle badge, he concluded, could be the best therapy for both himself and the community.
“As an Eagle Scout I have to be a leader. I can’t be fearful of how the world might react to my having AIDS,” he says. “It was time I got it off my chest and did good with it.” Initially his parents were doubtful. “My first inclination was to talk him out of it,” says Hank, director of environmental services at Bassett Hospital in Cooperstown. “But when I discussed it with my wife, Joan, we decided that this was how Henry wanted to deal with his illness and so we should respect his wishes.”
Until then, Henry’s HIV had always been a closely held secret. When he was first diagnosed at age 12 (his hemophilia had made him a prime candidate for testing), his parents held off telling him anything. “There was no treatment then for AIDS,” says Hank. A year later, when there were drugs available, the Nicolses told Henry and his sisters, Jennifer, 22, and Diana, 20, but the family agreed to keep the boy’s illness to themselves, if only as a matter of privacy. They even kept the news from Henry’s grandparents, aunts and uncles. “Henry wanted to be treated like a normal person, not a sick person,” says Hank. “And Joan and I were afraid that the same thing that happened to Ryan White [who was temporarily barred from attending school in Kokomo, Ind.] would happen to us. I didn’t know what to expect from the people in town.”
In confronting AIDS, Henry tried to maintain as normal a life as possible. As a youngster, his hemophilia had prevented him from taking part in football, basketball or baseball. Still, he came from a long line of active, outdoor types. His grandparents are scoutmasters, as are his mother and father. He became an expert backpacker, climbing Mt. Marcy, at 5,300 feet the highest mountain in New York State, when he was 8 years old. Now, under this new medical threat, he threw himself even more energetically into scouting, often traveling on camping trips around the country. “Scouting is very important to me,” says Henry. “It’s taught me a lot of things that have made a difference in my life, like helping people.” A year ago he look up low-contact karate and has since earned a green belt. “Karate is a good way for me to channel my energy,” he says. “It’s great physical exercise, which I need, and it’s good discipline, which helps my psyche.” As his mother puts it, “We just try to enjoy every day with Henry, as long as he is around.”
But last November the family suffered its most serious setback. Henry came down with an opportunistic infection in his esophagus. It was only a minor ailment, but its implications were enormous. Under federal guidelines, it meant that Henry was now diagnosed as having full-fledged AIDS and was given two years to live. “For years we clung to the hope that maybe, just maybe, Henry would remain HIV positive but asymptomatic,” says Joan, 41, who works as a lab technician at Bassett Hospital. “Then reality changed overnight.” Overall, Henry has reacted to his predicament with remarkable courage. “Like anyone else who has to face the possibility of death, he gets scared and angry at times,” says his father.
Once he decided to speak about his illness, Henry’s first step was to tell his friends. On March 7 he went individually to eight of his closest buddies from school and the scouts and explained everything. The next day he and his family held a press conference in Cooperstown. “I felt like a huge load had been removed from my back,” says Henry. “For years I had lived with this secret and the fear of how terribly people could react.”
Happily, the response was anything but terrible. The local school board offered to help in publicizing his illness, and his friends suddenly seemed even closer. “At first we were shocked to hear it. A lot of us cried,” says Chris Van Cour, 18, Henry’s best friend. “But then we realized we’ve got to be strong for him.” The Nicols family felt a wave of relief. “I can’t say we were shocked by the positive response,” says Hank, “but we were pleasantly surprised by the unanimous support.”
So far Henry has given his presentation on AIDS 30 times at high schools and colleges across New York State. The hour-long program is a mixture of statistics about the disease, warnings about the need to practice safe sex and moving reflections on his own case. “AIDS victims aren’t dangerous,” he tells his audience in a clear, confident voice. “Ignorance is. No one should have to suffer from AIDS or the ignorance of friends, family and the community. My Eagle project is not necessarily about AIDS. It’s about compassion, understanding and love.”
Henry often delivers his presentation with the help of his sister Jennifer, who is taking a year off from George Washington University to spend time with her brother. In recognition of his efforts, Henry is scheduled to receive his Eagle badge on July 28.
To conserve his strength, Henry tries to limit his speeches to one a week. He tires easily and naps everyday; he recently came down with pneumonia, from which he is now recovering. His bedroom at home is like any typical teenager’s—the walls are covered with science-fiction and horror-movie posters, the floor strewn with dirty socks and scruffy blue jeans. Only the neat rows of medicine and vitamin bottles give any clue to his condition. Having been accepted at the State University of New York at Albany, Henry is thinking about deferring enrollment for a year so he can travel around the country delivering his AIDS presentation. All in all, his determination to see his project through has been a great morale booster. “To tell you the truth, I don’t lose sleep over AIDS anymore,” he says. “If anything, I lose sleep over not getting my homework done. There are worse fears than the fear of dying, you know.”
KHOI NGUYEN in Cooperstown