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Uncle Ray

Fact: most of us live selfishly, lazily, stupidly. We destroy our bodies and our relationships. We complain about petty shit and refuse to make any difference in the world, much less ourselves, because it’s just too much work.

My uncle, my hero, is hardly any exception to that rule.

He drinks like a pirate and smokes like a gangster. But I don’t blame him. Put yourself in his size 11.5 shoes:

Since 2010, he has lost his dad, his wife asked for a divorce, he was laid off from his job, his daughter was diagnosed with Type 1 diabetes and he himself was diagnosed with ALS— and in turn, predicted to have less than 6 months to live.

What’s he got to lose, right? Well, everything.

He’ll never see his daughter, age 13 and blossoming, grow into a woman. He’ll never get to marry his beautiful and daring fiance, whom he met and fell in love with right before his diagnosis. He’ll never get to ride his Harley Davidson in another rally, decked out in a leather vest and his beloved blue John Lennon glasses.

Before long, no more late night poker nights with his hilarious brother, or brunches with his feisty mother.

Soon, he’ll have to rely on a wheelchair for mobility (he’s already using crutches for short distances and a walker for longer ones); he’ll eventually lose connectivity with his arms, bladder and the rest of his body. His mind will be the last to go.

That’s what I find most terrifying. I mean, can you imagine? Being completely “there,” but not being able to do a damn thing, not something as simple as lifting a finger or wiggling a toe, not being able to communicate in any way except maybe with your eyes with your loved ones? Fucking unfathomable.

I visited Colorado this past week, and I was completely blown away by his attitude. This man has every reason to be destitute, every reason to be sour and curse life/god/what have you, but he was doing everything but. He’s tying up lose ends, securing a stable financial future for both his ex and his daughter and his fiancé. He daily reminds friends and family about how much be loves and appreicates them. And he’s still living each and every day as fully and independently as his failing body will allow.

He’s already giving away his most treasured possessions. To me, he gave his John Lennon glasses and gold necklace, bespeckled with a St. Christopher pendant and a good luck Italian charm. “That’s worth a lot,” someone told me, estimating the gold carets— but to me, it’s priceless.

Uncle Ray…I love and admire you more than I can possibly express. Distance has made it hard for us to be as close as I’d have liked, but you taught me how useless and trivial it is to regret what can’t be helped. Whenever I feel like giving up, I’ll clutch your necklace and remember a man that knew better.

(Above: Uncle Bob and Uncle Ray, fraternal twins and trouble makers forever more.)

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