Archive for Tuesday, January 10, 2012
Shawnee native shares battle with AIDS in new book
When it occurred to him — through a dream that tests the limits of explanation — that he’d leave his deathbed and share his story with students, Don Carrel became angry.
P.O.’ed, in his words, or at least some variation of the phrase.
“This is going to occur,” he remembered hearing a forceful voice say in the dream. It all occurred about 15 years ago when full-blown AIDS reduced Carrel — who grew up in Shawnee and graduated from Shawnee Mission North High School — to 119 pounds and near death.
But he would not die, the dream told him. And he didn’t, additional help coming from advancements in AIDS treatment.
Looking back, Carrel said he met the unconscious directive with frustration for two reasons. For one, the thought of traveling to schools throughout Johnson and Wyandotte Counties was a tall task for someone whose energy was nil. Secondly, Carrel said he had long harbored a massive fear of public speaking.
Still he took his story on the road shortly thereafter. He’d first visit individual classes, speaking back-to-back-to-back, draining an already-limited supply of energy. He moved on to entire schools, speaking to 1,500 students at a time. Throughout all this, he tallied the number of students he figured he’d talked to, until finally losing count at 100,000 years ago.
Now, in an effort to expand the reach of his message, Carrel published a book, “My Dream to Trample AIDS.” The book, published through Dog Ear Publishing, is available online at amazon.com and barnsandnoble.com and locally at Shawnee Books and Toys, 7311 Quivira Road.
Part of “My Dream To Trample AIDS” is Carrel sharing personal stories about how the disease affected him and his family. It’s also a trove of statistics and prevention awareness. And it is peppered with letters he received through the years from students.
Like his speaking engagements, Carrel’s book is blunt in its presentation and assessments.
What’s in the book’s pages is a lot of what comes out when speaking with Carrel or sitting in an auditorium listening to one of his presentations. You hear about his frustrations about the state of HIV awareness in the United States.
Carrel talks about statistics. He talks about how HIV infections are down worldwide but up between in the United States. He talks about how African-Americans and Hispanics face the greatest risk in the United States. He talks about areas where poverty is concentrated being hotbeds for risk.
He talks about the blessing and curse that are modern HIV drugs. The blessing is his everyday life being made possible. The drawback being that it is easier for others to forget the disease’s presence.
Today, fewer people are on television or walking the streets appearing skeletal — the face of AIDS often looks like anyone else. Carrel said that while AIDS treatment advancements have reduced the disease’s death rate, its rate of infection remains as high as it was 15 years ago, increasing the pool of United States residents with AIDS.
Carrel figures he was infected in 1981 — the same year the first AIDS cases in the United States were reported, according to the national Centers for Disease Control and Prevention.
He said a test in 1986 revealed he had the disease. In retelling the story, Carrel says that his doctor walked in the room and told him to “get your affairs in order.”
“You will be sick in one year and dead in two,” he remembers hearing.
Carrel said of the 1.2 million people the CDC estimates to be HIV positive, more than 300,000 don’t know they are infected. It often takes between eight and 12 years before someone infected with the disease to start noticing symptoms. This, Carrel said, further highlights the importance that all get tested.
Carrel was compelled to get tested, like many often are, through a phone conversation. Someone with whom he once had a sexual relationship called him to report being HIV positive.
Life with AIDS doesn’t have to end early anymore. But, Carrel said, the vast majority of people with the disease die in poverty and about a third die homeless because of the price of treatment. Carrel said his pharmacy bill neared $50,000 last year. He shudders to think of not having health insurance, something oftentimes contingent upon one’s ability to work.
One of the first stories Carrel shares, from 1996, is that of a high school graduate who joins the Marines and discovers he is HIV positive. No one thinks they can catch the disease, Carrel said. No one thinks it can happen here.
But when the man called the people he was sexually involved with and after they were tested, a quick tally found five other teens in Johnson County HIV positive.
The idea for his book came about 12 years ago, Carrel said, with him finally finding the time to sit down and write it about 18 months ago. It started in his basement in Mission, where he pored over the thousands of letters he saved through the years. Since the book’s publication, Carrel has connected with people seeking to increase AIDS awareness and prevention on Twitter. He said the day his book became available, someone from New Zealand placed an order.
The book marks another chapter in Carrel’s stand against the disease. In addition to his speaking engagements, Carrel’s AIDS Walk Kansas City team, Don’s Teens Trample AIDS, has raised more than $100,000. In 2005, Carrel received the Ribbon of Hope award presented by the AIDS Service Foundation of Greater Kansas City.
He still takes phone calls from schools to make appearances. After all, he’s still not totally satisfied with the amount of education on the disease available out there.
Whether students are choosing abstinence, Carrel said, the time to teach is when they’re in school and thinking about it all.
At some point, he said, they’re going to cross that threshold.
“I’m not any good to kids if I’m not honest,” he said.





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