Thursday, August 21, 2014

Why We Should Stop Complaining About the ALS Challenge (I’m Looking at you Michael Hiltzik!)

* 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.

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