A dear family friend has just died of ALS.

He was a middle-aged, easy-going, quiet man whose body froze according to the definition and progression of Lou Gehrig’s disease.   I try to imagine inhabiting a body that will not cooperate or respond to my pleas for action and movement.  It feels like the deepest cut of betrayal as the body simply refuses to do as the sufferer asks.   The entrapment was gradual and crept up on our friend, slowly erasing his capacities.  It lurked, it tiptoed around the edges of his life, and finally broke into a full sprint, overtaking every system.  He had been the local painter, hired, respected and loved by many in our small town.  But he had to give up the ladders, the overhead reaches, the colors of the spectrum, the social connection offered to an introverted man.   In the end, he had no visible movement and yet his brain was humming along his usual interested and interesting pathways.  His final experiences were full of consciousness with no glimmer of independent motion.  Ironically, our dear friend, Will, couldn’t will his body to correspond to his commands or wishes.  As his speech faded away, he courageously, clearly and gracefully seemed to have known that the time had come to surrender.  And so, with the gift of presence and dignity, he did.

Yesterday morning, I stood in line at Home Depot waiting for my paint to be mixed. He popped into my head in a flash and I can’t help but notice the irony.   I didn’t know at that moment that he had died within the hour.  I seemed to be in the perfect place as he swooped in joy and freedom to express his goodbyes.  Recently, I found a well-used step ladder of his under my mother’s porch.  He had left it behind years ago when he worked alongside my sister, an intimate and dear friend, as they refreshed our family home.  I was given the thumbs up to take it home and have since enjoyed it, washing windows and continuing my own painting projects.  His old, forgotten, color splattered ladder provides the extra small step needed as I work and hope to enliven my own space.  I have often wondered, as I learn to be my own handy-man, if I would make him proud.  I will certainly now think of him and smile as the final coat of the vibrant Raspberry Blush is smoothed on my bathroom walls, bringing life and light to an ex-dingy, drab and dirty room.

For those of us whose bodies still move as we wish, we must say thank you.  Each time we reach for a refreshingly, soothing drink, we must say thank you.  Each time we are able to bathe and dress ourselves in any way we would like, we must say thank you.  Each time we express our love for another with a strong hug and tender kiss, we must say thank you.  Each time we eat a satisfying meal, enjoying the varied textures and flavors in our mouths, we must say thank you.  For those of us who can still get outdoors or to a health club to enjoy deep breathing and movement, we must say thank you.

I say THANK YOU for the thank you, my friend.

-Carol

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