Friday, 22 August 2014

A New High Water Mark

I continue to be amazed at the response to the Ice Bucket Challenge for ALS. Once again today I have been contacted a media outlet, this time CKNW in Vancouver, looking to do an interview about the Ice Bucket Challenge and ALS. It is an amazing time for me, for all PALS; to see what is happening and how it is happening, this is something that could not have happened any other time in history. The convergence of social media trends, awareness, and interest in neurological diseases is making this a steam roller.

There are still those who are negative about the whole Ice Bucket Challenge. Yesterday the Archdiocese of Cincinnati asked Catholics, and especially Catholic schools, not to do the challenge because some ALS research uses stem cells. There are those who call the whole thing narcissistic, saying the challenge is all about ego and not about ALS.

I don't care what they say. Last night I was out with a group of friends at a social function. The total group was about 80 or 90 people and I knew perhaps 30 of them. The evening was supposed to be a fun time at Aussie Rules Duelling Pianos. My friend David, who organized this event, decided to make it a bit of an ALS fund raiser. He said if the group donated $250 to ALS he would do the Ice Bucket Challenge right there. Then I got in the act, saying if the group raised $500, I would do it too. The a couple of others volunteered and even a couple of the staff at Aussie Rules volunteered. We raised $750 just that night.

Afterwards I went over to the Cat 'n Fiddle, one of my local hangouts. While I was there one of the servers asked me how she could become involved, how she could do the Ice Bucket Challenge. You see, they all know I have ALS but most of them don't really know what it is. Now they are asking about it. The same happened at Aussie Rules, friends who vaguely knew I was sick and was now in a wheelchair started talking about ALS, about how they could help, about what they could do.

There is a tide in this. It will, as with all tides, wash away back into the sea one day, sooner than we would like in all probability. People will get tired of seeing challenges. Challenges will get sillier and sillier. Memes will show up and the Internet will slowly become bored with ALS. That is fine with me. This tide has created a new high water mark; people are more aware of ALS than ever before. It's the first step towards a cure, and that is all I can ask for.

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