August 22, 2014

#ALSIceBucketChallenge COMPLETE

ALS sucks. I never really knew how much until last year, when I saw a play (33 Variations at Threshold Theatre here in Charleston) that depicted a brilliant woman's struggle with - and ultimately loss to - the insidiousness of this disease.

The Ice Bucket Challenge has been going on a few weeks now and I was consistently resisting dumping ice water on my head because really - in this day and age, and in times of civil and international chaos, what could be more stupid than dumping ice water on my head?

So we gave to an ALS charity after Charles and I were nominated for the challenge, but I had no intention of actually getting wet.

Then I saw this video, created by 26-year-old man who will ultimately die of ALS without drastic changes in ALS research and treatments. It broke my heart because, as I watched him care for his mother - dying from the disease - I wondered who will take care of him when his disease advances? Who will fill his feeding tube and change his oxygen tank? He could die alone, all because we haven't found a cure...


Still...why get wet, right?

Well, in the video, this young man mentioned that every time he sees another Ice Bucket Challenge video, it lifts his spirits. It gives him hope. It lets him know we care.

And then I noticed a friend of mine whose father died several years ago from ALS. She's sharing all the videos made by her friends and family. Her brother's been diagnosed with ALS, too. She needs all the support she can get.

We gave, sure. But what was I doing to help lift my friend's spirits?


I got wet.

And since Zoe wanted in on the "fun," did she. And yes, I took the opportunity to explain what ALS is, what it does, and why we need to fight for the cure.


Here is me, getting wet in the #ALSIceBucketChallenge.
(Don't mind Zoe's fingers in the frame. What can I say? She's an amateur filmmaker!)

And here is Zoe, getting wet in the #ALSIceBucketChallenge.

If, by adding our voices to the fight, we have helped anyone at all, then we've done our part. I hope we have.

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