* My usual disclaimer is in full effect here
folks! I don’t mean to offend anyone, so
stop reading here if you think you’ll be offended. I know many of you have very valid reasons
for not getting on board with this particular fundraising venture. These are simply my thoughts as someone who
watched her Dad succumb to an incurable disease.
We’ve all seen it by now; friends, relatives,
neighbors, and even celebrities dousing themselves in ice water, all in the
name of ALS. The premise is simple. Someone challenges you via social media to
dump a bucket of ice water on yourself and make a small donation, or chicken
out and pay $100. You are given the time
limit of 24 hours. It’s funny, but it’s
more than that. It’s important. How can dumping a bucket of ice water be
important? Let me ask you, how many of
you have heard of ALS before this? Sure,
you’ve heard of it as Lou Gehrig’s disease, but almost never ALS. And maybe you don’t think that’s such a big
deal? Well believe me, as someone who
has had to explain what it was that my father had, and getting more blank
stares than I care to count, having a name is powerful. My Dad didn’t die from ALS, but from
Huntington’s Disease. Like ALS it is a
neurological disease with no cure. Like
ALS it is underfunded, and with the exception of a story line on Grey’s Anatomy
or House, it goes virtually unnoticed. Unless
you witness someone you love go through it.
When you are watching someone go through an illness
that most people cannot relate to, you feel alone. You feel as if you are on a solitary island,
with a leaky raft and one oar. The
solitude becomes almost suffocating.
When you find someone who knows what you are talking about, you feel as
if you can breathe a bit easier. For the
thousands afflicted with this horrible disease, they are not as alone any
more. They still have to wake up every day
and struggle through life with this disease, but they know they are not
alone. They know people are out there,
and they know people are fighting…even if it is one ice bucket at a time.
I know for some of you, the challenges are
annoying. They clog your feed, they call
you out publicly. Some are afraid that
people aren’t really donating money, and they are playing light of a serious
situation. Incurable diseases are
serious; the pain, the loss of skills you once had, the change in
lifestyle. Having people dump ice water
on themselves is silly. But sometimes we
need a little silly to get through these times where we feel alone.
And let’s not forget the $22 million dollars that
has been raised. Michael Hilztik of the
LA Times has wondered if the money should be spent on worthier causes. Apparently, in his opinion, a cause is only worthy
if it reaches a large population of people.
I don’t understand this way of thinking.
“Don’t donate to that cause-not a lot of people are affected by it.” In my opinion, it is the rare diseases that
need this type of high profile fundraising.
Think of it, most of us donate our time and money to causes that affect
someone we know. We walk the track
because cancer never sleeps, we save lids to save lives, why not dump ice to raise
funds for ALS? And besides the money,
let’s talk about the conversation that has started; a conversation about a
disease that many people wouldn’t be talking about if they hadn’t been
challenged online. In fact, in my house
we told our son that we were donating money after we made our video, and the money
would help people who are sick. Teach
them young that giving is fun, and it will become a way of life.
So calm down everyone. (And Hilztik gain some perspective!) If you don’t like the ice bucket challenge,
don’t participate in it. But don’t bring
down other people for doing something virtually harmless that will ultimately
help others. There are not that many
feel good stories out there…people doing whatever small part they can to help
others is something to smile at, not get up in arms.
