An old friend of mine has been stricken with ALS/Lou Gehrig’s disease, in some ways the most devastating medical diagnosis a human being can receive. There is little to no pain in ALS, so at least that takes it out of the realm of suffering common to rheumatoid arthritis, bone cancer and other diabolical conditions specializing in pain delivery to undeserving innocents.
But in its eventual robbery of nearly all human muscular activity save for blinking the eyes and perhaps an occasional partial smile or frown from a minutely functioning facial muscle or two, ALS has no parallel in its reduction of human physical function to levels not seen even in newborns and embryos.
Almost making it worse is that there is zero loss of cognition, so there is no escaping the full gravity of one’s plight.
And last week, we found out that playwright and sometime actor Sam Shepard died of the same wretched disease, a development that rocked me back on my heels, given who Shepard was and what he stood for and dove into in this life.
That in turn brought forth intense memories of seeing two people, a woman in her early ‘50s and man in his late 30s, to their deaths from ALS when I served as a Hospice volunteer years ago.
Both of them made the decision to stop food and fluid intake when they had simply had enough of the life that the fates were forcing them to endure. It was a kind of last and only stand that was still available to them after the disease had taken away nearly every other facet of their independence and will. I considered it a unique and raw privilege to be with them in their final months and hours.
According to a lovely piece written by his ex-paramour, the rocker Patti Smith, for The New Yorker magazine, Shepard had worked doggedly to complete a last project, some final words to drop into the void, before his departure. So too my friend Doug, an ex-rocker himself who has been crafting a sort of last testament via his music, seeing the ever multiplying human population as unsupportable by our groaning, exploited earth and endeavoring to recruit no less than Bill Gates to drop his anti-hunger program in favor of wading post-haste into the far more critical matter of population control.
Though we all labor under a death sentence from the first moment of our birth, a definitive diagnosis that at least roughly sketches the limits of our days tends to quicken the pulse if we would deign to leave some imprint of our time spent here.
Still, the abject cruelty of this disease points an accusing finger at an apparently unmoved God. Sam Shepard falling to ALS smacks of particular malevolence.
Sam, a man’s man, and a woman’s man, too, I am pretty certain, all that lanky and fluid physicality, laconic, reserved, brow-furrowed with concern for serious things, creative things, mysteries he knew could not be resolved though that would hardly deter him from probing them.
I came across him first in “Days of Heaven,” an early Terrence Malick masterpiece of few words, stark raving beautiful pictures, and Shakespearean pathos. He was gorgeous and alluring in it, says this confirmed hetero who, if he did have more than a few gay bones on the spectrum of sexual preference in his body, would have been no doubt motivated to sidle them up next to Sam.
And then his play, “Buried Child,” full of madness and horrible secrets and stunted lives. I remember walking out of the theater far from having a clear sense of what I had just witnessed, but moved down to my marrow in any case, knowing it had been profound.
That this man, a portrait of physical virility, intellectual and emotional acumen, would one day be struck down by ALS, about as unvirile of a condition as it is possible to experience while still breathing in this life, not even able to let out a decent bellow cursing his fate…the thought just trails off, as helpless to bring it to conclusion and make sense of as Sam and Diane and Mark and now Doug were helpless ever to walk again, once those nerve pathways went to ruin.
I have written previously about Job, another set-upon character whom the Christian God toyed with in an unparalleled throw-down to assure him of that old truism probably every parent has trotted out in far less trying circumstances than are faced by those with ALS: “No one ever said life is fair.”
If they did, they were lying. Sam Shepard and my other ALS-stricken friends are far from the only ones who have been visited with that truth in the devastating way they endured it. But let’s just call them Exhibits A, B, C and D, and wish peace upon their souls, and upon their loved ones who will survive them.
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