Wednesday, May 22, 2013

An ALS moment...

Today I went to Starbucks after my massage and ran into a man who, less than a year ago, had given me an opportunity to feel hopeful and proud for overcoming a stumbling block.  (I wrote about our first encounter last September in the post Still talking, one way or another...).  I was happy to see him, but when I raised my hands to sign hello, I realized that I was at a loss…not for the words, but for the ability to express them in sign. 

My fingers and hands just do not move like they did a few months ago and, much like my speech, my ability to sign coherently is lost.  He told me not to worry, he can read lips and the sound of my speech won't matter.  Unfortunately, my mouth does not properly form words so lip reading doesn't work well either.

It seems like this new loss should not feel so disappointing because I only learned to sign such a short time ago, but it is really about the fact that I thought I had found a way to overcome my speech loss.  I thought I was so clever to just learn a new way of speaking, a way that not only allowed me to continue to communicate fluently, but it opened up my shrinking world to new friends...and I felt like I was beating ALS in a small way.

I remember fondly that moment in September, my moment, when I felt good about facing the challenge and finding a way to adapt.  Today, however, ALS had a moment when I came home and cried for the loss.  I suppose this was an important reminder for me that there are many levels to ALS Awareness.

The moment passed and the laughter returned which helped me to remember this:  it is ok to have the sad moments because they make all the others that much sweeter.

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