Saturday, August 23, 2014

“Not Rare Enough”

So I did the Ice Bucket Challenge. I dumped ice water over myself to raise awareness for ALS. The video is below, just to prove I did. Kinda silly, I suppose.

I could have just sent money to an ALS related charity or skipped the whole thing. It’s like being volunteered to make cookies for the bake sale. You didn’t say you would so you don’t have to.

But my sister, my son and I were nominated by my brother. I am doing the challenge. My sister donated and will give an additonal donation for each niece and nephew who participates. For us, it’s personal. 

My son never actually got to meet my dad, though they are much alike in looks and personality. My father had died four years before Jordan was born – died of ALS.

I remember that Dad’s doctor at Lahey Clinic in Burlington said that ALS was the diagnosis he most dreaded giving. There is no cure and no effective treatment for the disease, just a few ways to make patients more comfortable and perhaps add a few weeks to their life spans.

ALS is a degenerative motor neuron disease. My father had the “bulbar onset” meaning the first symptoms affected his speech and breathing. He died two years after diagnosis, in 1995. People with symptoms beginning in the arms or legs usually live a little longer. With ALS, muscles can not strengthen. The nerves connected to them stop working. People lose the ability to walk, eat, speak and breathe. The intellect remains intact.

My father was a generous, hard-working and helpful man who loved his family. He enjoyed making people laugh. His jokes were famous in our circle of friends.

Shortly after his diagnosis, a man at church asked what my father had. My father said that it was Lou Gehrig’s disease (ALS). “That’s rare isn’t it?” asked the man. “Not rare enough,” quipped my dad. And it still isn't. It won't be until no one gets it all. Nineteen years after my father’s death, ALS remains incurable and largely untreatable.

Humor remained a part of my father’s life to the end. When he could no longer speak, his favorite gesture – used even on his final night – was the thumbs up sign. It showed his good attitude and lack of fear. Later, a group of us would walk in the ALS walk, under the name “Team Thumbs Up.”

I still my miss dad and wish my son could have known him.

So that’s why I dumped water on my head. And here’s the video to prove it: 

(I did nominate three people, but you have to know me personally to find out who they are, for the sake of their privacy.)

Have you done the ALS Ice Bucket Challenge?


No comments:

Post a Comment