From this point, a person can look down and back. All the braided paths – so far below – are worn like ribbons in the stone and clay. The man or woman stands at a peak, buffeted by colder winds than either has ever known. Eyelashes blink themselves free of ice, then blink again. No matter that it is spring – or summer – or whenever else they find themselves up here. This chill is no respecter of time or season.
ALS – At Life’s Summit.
If anybody were to think ahead and idly imagine the worst among physical afflictions that burden humanity, surely this one would top the mountain. It is pitiless; its grip is implacable. It holds its chosen men and women firm on the pinnacle, with nowhere left to go but down.
Yet the view remains remarkable. The air is clean and the noises of earth diminish, with their currents of anger, despair, grief and hatred. Up here, it’s between the individual and his or her own will. The body fails but the mind endures. Hands that no longer possess the strength to write a single syllable are replaced by a power of another kind – the power that moves even this mountain; even this weight. Muscles have nothing to do with such a force. If it comes from any identifiable source, that source is the soul itself.
And it doesn’t make any difference whether he once threw the fastest pitch in the league or told a thousand pilots they were cleared for takeoff; whether she sketched a whirling sky or played a Bach partita that wakened God Himself. Whether they stood in front of elementary-school classes or stitched the seams in baseballs. It’s all irrelevant to the man or woman poised on the apex, confronting a destiny that will avalanche every former thing down the slopes and into the past.
The first to go might be the legs with their capacity to walk upright, toe-tap to a fiddler, wander along a beach as the foam fills in each footprint. Or it could be the formation of words, the easy flow of language like a waterfall, clear and coherent. The brain knows what it wants to speak; the throat or tongue or lips refuse to acknowledge its wishes. A man’s roar of laughter is muted; a woman’s cheerful giggle falls silent. A glass of wine turns to an instrument of strangulation. A satisfying meal becomes merely the memory of that meal, distilled into something the body will accept. A steak morsel, a lobster fragment, a strawberry slice, are held in the mouth like promises that can no longer be kept – tasted, then taken away. They are but ghosts from a feast remembered.
Yes, the world shrinks and constricts. It allows small room for resistance. This disease shows few mercies to those whom it seeks to partner. There are no bargains. The odds tilt sideways until every card is in the hands of the enemy, and its opponent’s hands can hold nothing at all. Not even empty air.
Yet the man remains; the woman holds on. They discover new ways to communicate, plan, and dream. They don’t abandon themselves, nor do they expect the rest of us to give up on them. We can’t always control what changes us, or deflect its momentum, not even a little. They already know this. We stand before them in awe, wondering whether we could face their fate and remain unbroken by it – brilliant and brave and somehow ageless. Printed immortal on the firmament, like the tracery of a comet that has passed but not entirely vanished.
For they are resolute, even when there are no voices left. As we watch, they quietly rise and shake the stars.
My husband, David, diagnosed with ALS in 2014 …