What We Can Learn From Ayala Ravek
By Debra Nelson-Hogan
There is nothing ordinary about Ayala ("Aya") Ravek or her website (www.nopainzone.com). The 13-year-old from the Ottawa area designed the site after being frustrated by the lack of information about CRPS and children. As a result, she has communicated with hundreds of children and adults alike from around the world.
Aya, who lives in Nepean, Ottawa, Canada, on the advice of her psychiatrist, Dr. Arlette Lefebvre, who thought it would give Aya a forum to express her feelings and frustrations about her chronic pain and, at the same time, communicate with others about CRPS. The colorful homepage directs the visitor to sections describing the impact CRPS has had on her life, medical treatments, photos and links to other information sites. Her parents, Pamela and Oded, helped her build the website and continue to answer many of the letters and emails that have come in since the site was launched in spring 1999.
The site has had hundreds of responses from people aged nine to 66, she says, and from all over the world. This open communication has helped Aya feel less isolated about having CRPS and has greatly increased communication among young people who have CRPS in the Ottawa area and beyond. What Aya called "an invisible disease" is becoming more visible, largely because of her efforts. Moreover, she was nominated for a Young Achievement Award through a Toronto philanthropist, Ed Mirvish, and for a Young Achievement Award sponsored by Scotiabank in Toronto through the Toronto Star Newspaper, called Women on The Move. She also was nominated for a Junior Citizen of the Year Award through Nepean This Week newspaper. This past Thanksgiving, Aya was interviewed by CBC Radio for a program called Ordinary Kids Doing Extraordinary Things, and the script of that interview is on her web site.
Aya's early experience with CRPS is typical: she was diagnosed with CRPS eight months after she was injured playing floor hockey and after going through the MRIs, bone scans and other diagnostic tests that failed to reveal CRPS. Of course, she was told it was all in her head. She says, "I used to wish that I had a broken leg or something so people could see was I hurt. One of the problems with CRPS is that it is an invisible disorder, so people don't believe you're in pain."
She is blunt about her initial experience with CRPS in a private school atmosphere, describing the faculty as uninterested and inflexible and some of her fellow classmates as downright brutal. "I felt teased and tormented. Like an outcast." A different school delivered more understanding faculty and administration willing to accommodate her CRPS. Right now, "I'm exempt from gym class and doing some other activities," she says but is otherwise typically engaged in school activities' and excelling at many.
Her mother, Pamela adds "She auditioned for, and was accepted to, this region's only arts specialty High School, Canterbury, to begin this fall; it was a great coup, as they only accept 200 kids out of over 600 who apply." She will be in the Vocal Music program, which is an additional 2 hours a day of the specialty, in addition to the regular academic classes.
What does she tell her friends about CRPS? "That I'm in pain from my neck to my toes, and then let them know that if they want more information they can find it on my website," she explains. Right now her pain level is down to 6 (out of 10) and she isn't using crutches or a wheelchair. Although at one time she was taking 21 pills a day, she is doing what she can to stay off traditional medications, whenever possible. Aya turns to alternative methods of handling her pain, relying on guided imagery and Rakian massage.
We can learn many things from Aya and her website about dealing with chronic pain. As her mom says, "Our Aya is a marvelous girl and a great inspiration to us—and others."
2003
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