On the first weekend after Labor Day, the sky is clear and the winds carry that unmistakable taste of autumn—a tang of tannins and a hint of plant matter, somehow pleasant yet foreshadowing winter’s icy cold. More than just a cooling breeze, these winds are open the windows winds, rattle the shades against the frames and sills winds, rustling rearranging paper long accustomed to an undisturbed piled existence winds. They are lifting and twirling, cooling and clearing winds, and while they reorder the physical space in which I live, today they also reshuffle my psychic space so I now need some kind of grounding weight to keep me in place, to hold me centered here and not blow into darkened dwellings. The loss experience defined by ALS is an autumn wind chained to the feeling and thinking and desiring and doing that defines the person I still want to be, yet symbolizing a dis ease power to strip all coping away, leaving naked experience shuddering and jerking like chimes wildly dancing in zephyred abandon so that vulnerability and chaos emerge in the autumn to winter smells—tannins and plant and crunch and sun.
Occasionally, I dream of biking these head winds, more a dream of the feeling of wind, gusts against my face, whipping my hair, pushing against me as I ride, its resistance torking the bike frame and gearing dusty grit that stings my shins and bounces off my eye shields into the crank and chain and derailleur. Pre-ALS, when I rode to and from work, home was against the stiff west winds that whistle into the Twin Cities with nothing but the prairies between their somewhere in the Dakotas life source and the urban cosmos that finally trips and funnels them into so many swirls of channeled currents, playfully strong. I used to think of this as a trial to be accomplished, and there were many evenings I found myself lowering my head, pushing hard to push through, the wind resisting my efforts, though eventually allowing me passage. How I wish I had seen the wind for what it was—a statement of health and empowerment and strength, rather than another impediment to an easy ride. How I wish I felt that empowering resistance again.
What I didn’t know!
Sometimes in the middle of the night as I rouse from first slumber—lusciously mid-conscious between sleep and wakefulness, thinking I have been riding against these winds, believing for just a moment that ALS is the stuff of dreams—Ev rides on my rear wheel, drafting off me. I experience the joy of blocking for her as we careen our way home. Such vulnerable moments, for when realization dawns, the head wind ride retreats into the recognition of fading memory of activities still present in my dreams but utterly gone from the physical being that I have become. As if to punctuate the loss, my legs are now even heavier, my arms and hands weaker, my ability to adjust and turn in bed lessened and my joints and bones aching from sleep’s position held too long. I hear silent weeping in my mind, and I realize I am crying for what cannot be again. Sometimes, Ev hears it too, and she pulls the covers back over me, adjusts my pillow and kicks the cats off the bed, pats my arm and falls back to sleep only a little disturbed. Such is the stasis and peace out of dreamy regrets.
In waking, I draft on Ev while she positions herself between the headwinds of life and me.
This week, in the face of what would have been a mere challenge in my old normal life, the winds of ALS stripped away all pretense that I still own such capacity. I have known this truth almost since the day of my diagnosis, but as the human I am, I often need to be reminded of the fact. I spent years constructing all kinds of facades, persona, roles projected as needed for the task at hand. It was almost like being an oversized, organic iPad. Does today call for quiet confidence? Whip out the app and take over the room. Is it time to project suitable irritation at bureaucratic stupidity? There’s an app for that too. “Applied Pretense”–what one reviewer calls, “the app you really cannot live without,” is available in the App Store with an average five star reviewer rating. But ALS, like the autumn wind, blows all this technique, techné into the dustbins of failed humanity. If you approach your life thinking there is a suitable screen that will take care of it, ALS becomes the vortex that dashes that screen into smithereens, drilling you down to the essence of your being and voiding any such cover you might have thought you owned.
The purity of a life imposed upon by ALS makes the apps approach to success irrelevant. It exposes the gold of life experience like a refining fire consuming the dross we work so hard to project. If unrelenting stress is bad for human beings, then ALS makes conscious the reason why. For me stress has become the purely physical phenomenon it is—body shivers with increased muscle fasciculation, narrowed eyesight into tunnels of diffuse yet centered light and darkness pressing in and around. And once through the initial angst, I am exhausted beyond all physical belief to where I can only lean back and try to sleep enough of it off to bestir myself only a little bit. Stress is cumulative, but only with dis ease have I truly known its accumulation. And with ALS, coping mechanisms such as a nice swim or run, or yoga pose to clean it out is impossible. Like the wind, ALS rearranges the environs, sweeping clean any pretensions of control over the stresses of day-to-day living.
In “The Windhover,” Gerard Manley Hopkins speaks the power I know in these blasts and gusts:
As a skate’s heel sweeps smooth on a bowbend: the hurl and gliding
Rebuffed the big wind. My heart in hiding
Stirred for a bird, — the achieve of, the mastery of the thing!
Brute beauty and valour and act, oh, air, pride, plume, here
Buckle! AND the fire that breaks from thee then, a billion
Times told lovelier, more dangerous, O my chevalier!
Big winds blow through life, and I so wish I could be the skate’s hurl and gliding that rebuff the squalls and gales of their concentrated air. I have tried to keep my heart in the open, stirred by “the achieve of, the mastery of the thing.” But life experience now has such intensity, that to experience it in such purified state overloads any capacity for control I might believe I have. My ability to project the iPad app screen of applied pretense wanes, leading to a new space of taking in only what I can receive, a little at a time. Autumn moves to Shakespearean winter—“Blow, blow thou winter wind, thou art not so unkind as man’s ingratitude…”
And I must learn to be more thankful for the blows to come.