Monday, August 18, 2014

The Real Challenge

Just putting this out there.... ALS is without a doubt one of the crappiest diagnoses out there. Not to minimize anybody else's experience, just making an observation. In working in neurology, I met several ALS patients and  their selfless caregivers. This shit sucks. Hard. 

Imagine Han Solo stuck in the carbonite --  his thoughts, emotions, anxieties all still perfectly functioning but nothing else. Even if he could force a scream nobody would hear it. That's everyday for the thousands of people living with AND dying from this under acknowledged, under funded disease.  Every. Single. Day. 

I didn't get the "ice bucket challenge" at first. It seemed like a chance to look good on Facebook and avoid donating money which felt weird to me. But then I realized it's not just about the money. My kid asked "what the heck IS ALS anyway?" And I told her. Now I get it. 

Don't get me wrong. The money is important. So so important. Nothing can change without money. Research. Treatment. Cure. Support. All of this depends on money. And the ice bucket challenge HAS raised money. Lots of it. Which is good. 

But what the ice bucket challenge has really raised is awareness.  It has opened a dialogue. Sure the videos are fun. And funny. But the real challenge here has been getting people to make themselves mildly uncomfortable just long enough to think about how lucky they are. To get people to get it. We can shake off that ice water, wrap up in a towel, post it on Facebook and feel all proud  for being so compassionate and generous.  People with ALS can't. And no Princess Leia is going to be able to change that. 

So I'd like to add to the challenge. Don't forget.  Don't forget what it's about. Don't forget why it matters. You may have taken on the challenge because someone "nominated" you or "called you out" and if that's what it took that's great.  But now you know. Now you know how it feels to have your nerves jolted and ignited.  You know how it feels to be Han Solo, if just for a few seconds.  You know how it feels to be "frozen."  Don't let it go. 

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