I was challenged to complete the Ice Bucket Challenge to
raise awareness and money for ALS. As a student of sociology, I had been
watching the challenge gain momentum on Facebook and had pondered the reasons
why we, as a society, seem to need personal attention (a/k/a posting a video of
ourselves doing something silly) before we will donate to a cause. Some folks
took my ponderings to mean that I was against raising awareness for ALS, which
I could take another look through a sociology lens to evaluate. I won’t do that
here.
The fact about my relationship to ALS is that it has been my
worst fear since January 2, 2002. I’ll get back to that date in a moment, but I
have had an awareness of what ALS is and does for a very long time. It is my
worst fear because I cannot imagine being “here” in mind but unable to express
love for my family because my body won’t cooperate. It seems to me like it
would be the worst thing that could happen to me – since 2002.
Before ALS, I had a different, deep fear. When I was an
introverted old soul making my way through my 5th grade year, I read
a book by Erma Bombeck entitled “I want to grow up, I want to grow hair, I want
to go to Boise.” In it, she told stories about children who were battling
cancer. As a fifth grader, I somehow wasn’t worried at all about having cancer
myself, but I did develop a deep fear of having a child with cancer sometime in
my adult future.
Even in college, I studied Biology with a focus on cancer
and micro-biology. Always in the back of my head was that remembrance of the
fear that I had. My senior year of college, I had my youngest son during the
week before fall finals and I returned to school that next week to take my
exams. I didn’t know then that I would learn more about pediatric cancer than I
ever wanted to know in just over a year.
January 2, 2002, was the day that I learned my son, who had just celebrated his first birthday, had
alveolar rhabdomyosarcoma (RMS). RMS is a rare form of cancer, and the alveolar
subtype is one of the most aggressive. Through a year of surgery, chemotherapy,
and radiation therapy, my son fought the battle with this disease and won.
Today, he is 13 years old and, although he continues to have surgeries to
correct skeletal issues as a result of the radiation, he is very healthy and I
am thankful for each day that I get to be his mom.
The outcome is not always that good for the families whose
lives are forever changed when a doctor tells them their child has cancer.
Cancer is the leading cause of disease-related death among children ages 0 to
19, even though it is rare enough that (aside from leukemia) drug companies do
not see it as being an area of strong need for research. In the United States
alone, 37 children are diagnosed with cancer every day. That is 37 families
whose lives are forever changed. Of those 37, 9 of them will die.
My reason for writing this is to issue a new challenge.
Because we all found it incredibly easy to open our wallets and be silly for a
good cause, I believe we can continue to do that on a regular basis. My
challenge to you is to find a cause each month that you will open your mind and
your wallet to. Whether that is a continual donation to ALS, a new donation
each month, or whatever you decide to do, don’t let the ice bucket challenge be
something you did just for a Facebook video opportunity.
Open your minds. Open your wallets. Change lives ALL year,
not just for a challenge, but for good.
September is Childhood Cancer Awareness Month. My donation
this month will be to St. Baldrick’s Foundation, which I have found to be an
organization who puts a very high percentage of the money it raises directly
into childhood cancer research.
