So the Ice Bucket Challenge continues and I’m forced to explore my negative feelings about it. I seem to be almost alone, as evidenced by numerous articles. The one that really forced me to think about my stance was written by a family currently living with ALS. I thought, “If they don’t find it insulting, why do I?”
So during my morning run I turned off the music and let my thoughts flow. This post is the word vomit that came from those thoughts.
My mother’s ALS journey began with a fall down our basement stairs that resulted in a life changing head injury. It was February 1, 1983. She was 49. I was 16. She was never the same. My life was never the same. I didn’t have a mother anymore. A stranger came home from the hospital. A stranger in my mother’s body. Of course, my normal teen angst did nothing to help matters. Mom made progress after a year of PT. Got somewhat better, and then began having other problems.
In December of 1987 the doctors diagnosed ALS. Was the fall the first symptom of the ALS? Or did the trauma of the fall bring on the ALS? We’ll never know, though I suspect the former. She died on March 1, 1989, two days after my 23rd birthday. She was 55. I did not cry. It was a relief.
This is the most I’ve ever talked about that part of my life. My feelings were quickly sealed away in my subconscious never to be explored again. I like to think of it as a box stuffed away in a far corner of my brain. At 48, I’ve spent more than half my life like this. The box was thoroughly and completely buried. Until now. That box has been dragged out in the open.
All of the sudden ALS is in my face every day. Many times a day. People are talking about it and laughing. Every time I see one of those videos it’s like another little dent in that box of feelings. I don’t want to open that box – God knows what I might find.
So, no. I don’t like the Ice Bucket Challenge. But not because it’s trivializing ALS. (I’m still not entirely sure that it’s not.) I don’t like it because it’s taking me places I don’t want to go. But that’s my problem, so dump away. And keep the money flowing in to your local ALS chapter.