Thursday, August 21, 2014

Enlightened by the ALS Ice Bucket Challenge

I lost my beautiful Mama to ALS just 10 months ago, and the current onslaught of Ice Bucket videos has been a roller coaster of emotions!

My first reaction was sadness, and the urge to resist everything that brought the dreadful ALS to the front of my mind.  My next emotion was skepticism, as I saw no correlation between wet squealing people and a cure for ALS.

But as the viral reaction became impossible to avoid, I suddenly had an epiphany….a lightbulb moment, if you will!  Or, perhaps an "ice bucket" moment to be accurate.  Let me explain….

Mom was a beautiful lady.  She handled the news with grace and dignity, and a strong, faithful inner peace.  But as the days wore on, she also became sad and withdrawn, almost exhibiting a kind of shame over her fate.   She shied away from outings as the awkward stares, the confusion when she spoke, the lack of understanding of ALS - all these things left her feeling uncomfortable and alone.  Speaking, eating, breathing…normal acts that now made her embarrassed and afraid.  She made me promise to keep both friends and relatives away as the disfiguring disease consumed her body.  Her pride was gone and her spirit was broken.  I tried my best to keep that promise.  Turning folks away was hard, but I had agreed, after she promised to attend one last family birthday party and say goodbye in her own way.  It was one of the hardest events I've ever attended, but in the end, it was a huge success.  Here is my wonderful family, celebrating the birth and life of my Mom.

Just 3 months after this outing, Mom left this earth.  Her disfigured face returned to it's beauty as we watched the peace return to her soul.  She left as gently as she had lived.  For that we are forever grateful!  We had great support from the ALS Foundation and Heartsway Hospice, as well as our multitude of friends and family.  Sadly, ALS changed my whole family forever and nothing will ever be the same…..

But back to my enlightenment.  It suddenly dawned on me that the major accomplishment of this crazy Ice Bucket Challenge is awareness.  People are learning about ALS!  They get it!  The donations are fantastic and bring lots of hope, but from my perspective, awareness is the greatest gift that can be given!  May no other victim ever suffer the shame and isolation my Mom endured.  May no other family struggle to explain the devastation ALS can bring.  We all know the words cancer, stroke, diabetes, heart disease.  Thank You ICE BUCKET CHALLENGE for teaching the world about ALS

If you'd like to donate to help ALS families cope with this challenging disease, click here.

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