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What We Can Learn from Aya 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 RSD 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 RSD. The colorful homepage directs the visitor
to sections describing the impact RSD 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 9 to 66, she says, and from all over the
world. This open communication has helped Aya feel less isolated
about having RSD and has greatly increased communication among
young people who have RSD 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; the script of that interview is on her web site.
Aya's early experience with RSD is typical: she was diagnosed
with RSD 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 RSD. 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 RSD is that it is
an invisible disorder, so people don't believe you're in pain."
She is blunt about her initial experience with RSD 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 RSD. 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 RSD? "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." |
