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 …
ALS definitely tops the heap of crappy cards you can be dealt in life. You have summed it up beautifully.
Thank you. It can be tough to find positives sometimes but I try. These cards have a few aces but they’re usually not in the hand. The trick is to get them before the pack gets shuffled again.
I am always inspired by your photography and your words! I love what you bring to the lives of others! Xo
Thank you, Connie! If I’ve brought you something of value, then I’m well pleased. 🙂
So beautifully written.
Thank you so much. Greetings from my little corner of Nova Scotia!
Brenda, we have never met. I follow your pictures and posts through our mutual Facebook friend Nancy Smith. I marvel at your ability to capture such wonderful images with your camera, but marvel even more at your ability to describe the ebb and flow around you in what appears at first glance to be prose, but reads much more like poetry. I understand that you were a teacher for a period of your life – your students were clearly blessed. Your students, family, friends and acquaintances must also blessed by your peaceful and positive outlook. In a word, the health situation in which you and your husband have recently found yourselves “sucks” yet somehow I sense that you will find a path through this darkness. My thoughts are with you at this time – perhaps our paths will cross sometime.
Thank you so much, Dave! I’m always happy when someone enjoys what I post on Facebook (or anywhere else). Yes, I taught at Yarmouth High for many years; I miss those days and am grateful to have had that opportunity. The students were my teachers, in truth. I try to remain filled with hope and to offer something positive when I can. I’ve learned much over the years, but still struggle with my own failings. I suppose that’s true for us all. If I’ve brought something bright or peaceful to someone else, I’m blessed too. Your words mean much to me on this early morning, full of mist and the awakening of birds. Thank you for the kind thoughts and yes, perhaps our paths will indeed cross. Nova Scotia is small and our interconnections run through most of the province. I keep discovering this more and more, the older I get.
This is a deeply moving testament to the endurance of the human spirit, and the profound testament a life makes, wherever it takes us. Brenda, your writing will aid those who suffer from this mystifying disease, and those who love them.
Joanne, thank you! I hope that what I’ve written will help to make others more aware of the disease and those who are confronting its challenges. I believe that in the end, our physical afflictions matter far less than the light and courage we carry within (even when those might not seem obvious to us). Still, the fight is difficult. Personally, I’m not so sure I would possess half the strength needed to cope with it, so I stand in awe of those who do. They are remarkable individuals.