Tuesday 19 August 2014

Ice Bucket Challenge

So, in response to a challenge, I dumped a bucket of cold water on my head.  I also donated $100 to ALS Canada  (   http://www.als.ca/   ) .  It’s kind of a fad right now… Everyone from Lady Gaga to Sesame Street’s Cookie Monster has posted videos of the downpours.

In the past couple of weeks, $15,000,000 has been raised in the U.S and in the past 4 days, over $130,000 has be raised in Canada with over 3,000 new registered donors.  

There are also several folk who disdain this new “fad”.   Celebrity Comedian Ricky Gervais wryly tweeted “Dear Celebrities, OK now that’s enough. Please stop pouring lovely fresh water over your heads” – Africa.    He’s got a point…  And yet, I think it’s a good campaign.

I have been minister/companion to  a small handful of people  as they struggled with ALS.  I have been there for the last breath of two and presided over funerals for another 4.  ALS, or Lou Gehrig’s disease sucks. It is a progressive neuromuscular disease that kills nerve cells and leaves victims paralyzed.   Rarely have I felt so impotent, as when I have watch once lively and vibrant people disappear into the living prison of a body that no longer responding to their commands.  I have seen the wit and intelligence behind their eyes and wished that I could somehow reach inside and let them free… but only death has been able to do that.   
So, for me, the bucket challenge has been a small way for me to actively share my grief and do a small bit of good.  The money donated/raised matters a great deal – but for me, it was also a brief memorial to lovely people who slipped away from my grasp.

I believe that part of the genesis of the “Ice Bucket Challenge” was to share with others a brief fleeting moment of what those with ALS experience… for a few seconds as the ice and water cascaded down my body, I felt a paralyzing numbness that is a unique feeling for me, but a ubiquitous experience for those with ALS.  If we seize on this moment, we can talk with each other about the experience and perhaps find a small window that leads to greater understanding of what our love ones are experiencing as the disease takes hold.   The conversation and engagement matter…  If the shocking cold were to only make people go to the website and discover that between 2 and 3 Canadians die every day as a result of ALS; if it would inspire people to go deeper into the website and discover the ways that they can support research and patients… then, it just may be worth all that water.

For now, I’m content that the ALS society of Canada is very happy with the response to the Ice Bucket Challenge; I’m content to have talked to 5 different people about ALS in the past two days;  I’m content that several of the youth in my community have been inspired  (it was one of them that challenged me)… and I’m content that so many people are recognizing the ALS society as an organization worthy of financial and volunteer support.


Or maybe, I’m just all wet….   

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