He Spreads His Message of Prevention
February 2, 2012
by John Long
Don Carrel thinks he became infected with HIV as early as 1981. He traces that date to a partner who later died of AIDS. He lived with the virus for years without knowing, back in a time when so many knew so little about the disease. It was only when he was hospitalized with pneumocystis pneumonia in 1995 that the reality became life-threatening.
“I didn’t really have any illnesses, not even a cold, for the first 14 years I was infected,” he said. “Finally, in 1995, I started to suffer some severe fatigue and within about four to five months, I was in the hospital with pneumocystis pneumonia. By the time I got out of the hospital, I had a CD4 count of zero and I weighed about 119 pounds.
That harrowing episode led Carrel to write a book about his personal story of fighting HIV.
“When I was in the hospital, I literally had a dream where I was told, ‘You’re not going to die, because you’re going to go out and teach high school students what they need to know about HIV.’ Hence, the name of the book is My Dream to Trample AIDS.”
Carrel published the book in November 2011 through Dog Ear Publishing. It’s 254 pages and a great read and story for adults as well as young people. In fact, the subtitle is What Everyone of Any Age Should Know About HIV/AIDS.
“I wrote it for all ages,” he said. “Most of my volunteer work has been with high school and college students and church groups. One of the groups with the fastest increases in new infection rates in the U.S. is the retirement communities, so it’s a disease that is still affecting people of all ages.”
Carrel said he was angry when he first got the diagnosis, as many others are. He had lost many of his friends to AIDS. After the doctors made the diagnosis, they told him to go home and get his affairs in order because they didn’t think he’d be alive in two years.
“To be honest, I was pretty much ready to die at that point. I was just basically kind of ready. I’m thoroughly convinced that this dream did not come across as a request or suggestion. It came across as ‘This is going to happen,’ and it did.”
“I’m amazed sometimes I’m still here,” Carrel said. “This is like my 30th year of being positive, and to be honest, my health is tremendous. My CD4 count is over 500, my viral load is undetectable, my cholesterol and blood pressure numbers I would compare to anyone in [their"> 20s, and I’m doing amazingly well.”
He said that public speaking terrified him initially, but it was something he felt he needed to do in order to educate young people about the disease and what they could do to prevent it. In his book he writes:
“Often, those involved in sexual education, including parents, discuss the subject in general terms and fail to give specific information about what can be done to prevent unwanted pregnancies and STD infections. In this chapter, you’ll find I’ve included explicit details and some content that may shock you. In an effort to help others avoid HIV/AIDS, and other consequences that might result from risky behavior, I would rather provide too much detail than not enough.”
Carrel follows that passage with a quote from a young person who responded to his speaking engagement: “Dear Don… Now every time I hear the words HIV, AIDS or sex I will think of you and what you have taught me. I’m so glad you talked about sex because I had questions but I would never ask my parents because we don’t talk about sex at my house. Luckily, you came and answered them.
This is not the only testimonial from a student. In another chapter, Carrel includes personal stories from many of his students of their situations with a relative who was gay or was fighting the battle against HIV/AIDS as well. The letters from the students are intensely personal and demonstrate the effectiveness of the message Carrel was giving to them.
In the book, Carrel doesn’t spare himself from the discussion. He gets very personal with stories of his own health, side-effects of medication and what it’s like to live with a disease that can also be quite expensive to treat. In describing the side-effects, he writes: “Do these side effects impact the quality of everyday life? I can assure you they do. I’ve been taking HIV medications continuously since I swallowed my first two capsules of AZT in 1998, and I’ve been coping with unpleasant side effects of those medications ever since.”
Carrel said, “The book has a lot of description on medication, a lot of discussion on side-effects, a lot of discussion on costs. You know I get a little disturbed, because especially in the younger gay community, there’s kind of an uptick in infection rates. If you wind the clock back 20 years ago, people saw a lot of sick people walking around on the streets, so I think people were much more careful. Today you don’t see sick people walking around the streets because they’re on treatments. They look better. I know a lot of people have the attitude that it’s not a big deal — if I get HIV, I’ll just take a pill.”
Carrel writes about the high costs of medication and how even with pills, there are the added costs of health insurance and prescription drugs, even with good insurance.
“I’ve been hospitalized one time because I almost died of AIDS and three times because I almost died from some medication-related issue,” he said.
Carrel has lived with his partner, Chris Curry, for 15 years. They live in Mission, Kan., with their two beloved dogs. Carrel said that after losing his own insurance, he was able to get coverage under Curry’s domestic partner insurance, which fortuitously happened when he needed it most.
“Part of my book has kind of a spiritual message, too,” Carrel said. “I mean, the whole concept of the dream is kind of … a calling. I can go back and look at my life and say that just about the time it looked like I was going to be in deep trouble, either my medication wasn’t working or I wasn’t going to be able to pay for it, or something happened — just about the time I was out of options — something came along that intervened and took care of me. So I do kind of feel like there is someone looking out for me and doesn’t think I’m finished.”
Carrel was married and had two sons before his divorce and his experience of coming out as a gay man. He was born in Kansas City, graduated from Shawnee Mission North, went to Kansas State University, and lived in Manhattan, Kan., for 22 years. He moved back to Kansas City in 1991.
Many people involved with AIDS Walk know Carrel because of his huge teams of high school students who have walked in the event.
“Actually, for three years, I had a team of teenagers called ‘Don’s Team Trample AIDS.’ I recruited them in high schools and I worked to put them in T-shirts. And I think it could have been the largest AIDS Walk team ever created because we had something like 1,500 people for about three years. We haven’t done that for a number of years because to be perfectly honest, it just got to be emotionally and physically too much. I still encourage high school kids to walk in the walk. I still actively raise money for the walk. I raised probably $5,000 a year on my own for the walk each year, and I actively support the walk.”
Carrel’s “Don’s Teens Trample AIDS” has raised more than $100,000 in previous AIDS Walks, and he was given the Ribbon of Hope award in 2005 from the AIDS Service Foundation. This year he plans to sell books at the event and give a portion of the proceeds to AIDS Walk.
Carrel describes his book as not for 5-year-olds, but “anyone old enough to think about having sex should read the book.”
“I turned 60 in June, and that’s another reason why I wrote this book,” he said. “I am talking to high school students and it kind of amazes me that I still have an uncanny ability to connect with a group of 15- and 16-year-olds, which is surprising enough just because of my age. But part of it is because I am incredibly honest when I talk to them. Or maybe it’s because I tell so many embarrassing things about myself,” he said with a laugh.
My Dream to Trample AIDS is available in hardback for $29.95, paperback for $17.95 and as an iBook or eBook for $9.99 through www.TrampleAIDS.com or www.amazon.com. Carrel said he would also sell paperbacks for $15 to anyone who emails him at email@example.com. He will also have a table where he will sell books at the April 28 AIDS Walk. More information is available on his Facebook page “Trample AIDS.”