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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Thanks Drew – I really appreciate this post – being good friends with Doug (aka Sledge) as well, and an appreciator of the work of Sam Shepard… the reflections on the incomprehensibility of being struck down by a disease like ALS strike home, being with Doug recently, it is inspiring to me how he has kept his dignity, wry humor, and commitment to wringing every last drop out of life… I would like to think I would be able to muster this level of courage and presence of mind if faced with such an immense end of life challenge. And, in spite of all that ALS has wrought, Doug is focusing his last artistic statement on our human condition writ large, with a plea for sanity/reason in terms of the underlying factors influencing the fouling of our planet – population control… Readers of this blog may want to check out Doug’s play on the topic, The Big Undo – go to YouTube and check out:
Thanks again Andrew.
Thanks, Kevin. It seems we have to engage in a constant balancing act between appreciating our mortality and the radical contingency of life, facts that compel us to eat, drink & make merry, cuz tomorrow we may die, and on the other hand, assuming we are going to live halfway till forever (or at least till, oh, 90), so we had better plan accordingly and maybe hold off on giving it all up for the moment’s glory. Drop me a note when you’ve figured out how to thread that needle, my friend!
I am not all that familiar with Sam Shepard’s work. But I am familiar with the effects of disease. It seems that one of the difficult aspects of human suffering versus the suffering of animals, is our darned intellectual and conscious superiority. In the first place it makes us conscious of our own demise, while animals seemingly know instinctively when live can no longer be live it’s time to lay down and die. But humans have this deep inherent belief that we can overcome anything. Our Christian theology of an omnipotent God seems to underlie this mistaken idea that a superior God will somehow intervene, and like in the case of Job of the Bible, step in at the last moment and restore us. Frankly, I like John Caputo’s idea of an Unconditional who does not rule, promise, or even intervene in our earthly affairs. This view of God suggests that the Unconditional is so deep that HSI (He, She, It, alt name for God) doesn’t exist, but rather insists that we exist until we no longer can. At least Caputo doesn’t try to give us false hope in a high up above God who has the power to save us from our human condition.
It was interesting to read how Sam Shepard pushed to complete his projects almost to the end. I didn’t know him well enough to comment on his attitude toward life as he became more and more disabled and feeble. But over my forty years as a minister, chaplain, and program director for dysfunctional people I have noticed that as people become overwhelmed with earthly pain, disability, and suffering they seem to become more conscious of that the task is simply doing what’s at hand. Years ago when I worked with Hospital Chaplaincy services, I noticed that people who were suffering seemed to become more empathetic and caring for others. Often I would observe a dying person trying to comfort his or her visitors, even chaplains. I thought how odd that the weaker the body, the stronger their spirit of concern for others became. I wondered, what’s going on here?
There seems to be something profound going on with the dying, generally speaking. It’s like the more people are forced to let go of earth strength, hope, and even faith in an all powerful God, the more human they become. I am not suggesting that there is something enviable about suffering. But it does seem like the more we have to let go of impossible hopes and beliefs that God will rescue us from our suffering the more this “letting go” brings us closer to the spiritual essence of being human. Paul gets close to this view when he tells the church in Corinth, that the less God replied to his prayers to take away the thorn in his side the stronger he became in God’s grace. Maybe this wasn’t what Paul wanted, but he seemed to find something even more beneficial, which was the grace to accept his life as it was. Possibly Paul could see that there were things in life that are worse than death. Could it be that the acceptance of life is better than false hopes, or faith?
I’m not sure I particularly like believing in an Unconditional, but I am pretty sure that my suffering has made me more human.
Robert, thank you, as always, for this thoughtful (and thought-provoking) response essay. Many riches here, but I’ll just take up a point or two in the time I have. (I’m preaching at my church in a couple of hours!)
I left Christianity a very long time ago now, went through all the usual stages of disaffection and disengagement from what seemed to be unrelenting historical atrocities committed even by its assumed better lights. (Those atrocities continue today in many forms and places, including the absolutely inexplicable and indefensible alignment of evangelical Christianity with the profoundly unchristian, uncharitable current occupant of the Oval Office, about which I will say no more here.)
But key aspects of Christian symbology that continue to resonate with me include the suffering Christ, and the descent of an abstract and supposedly omnipotent sky God into human, mortal, suffering-and-dying form. No more omnipotence on that cross, just suffering, humbled humanity, crying out in anguish, “Why hast thou forsaken me?”
It is a question for the ages, and in my view, it is decidedly NOT answered by resurrection and happy times again three days later, but instead by more of what you describe: the ultimate acceptance of our fate as mortal creatures, and the tenderness and compassion that seem only to bloom and multiply in both the dying and in those who are with the dying as they pass on.
It doesn’t always happen with all people, but something wonderful, profound and inspiring can take take place in that letting go by the dying, all earthly cares subsiding and passing into the mists of time. Truly, they become more “free” in the way you describe, all the matters big and small that have necessarily occupied their lives becoming just so much testimony to a life well-lived but no longer bound by duty, responsibility, or suffering.
So it is true that at some beautiful point, it is more their loved ones who are suffering and need consolation from the dying person, because they have to go on without this loved one in their midst, and they will continue to suffer as all people do in this earthly realm while the dying person has drifted off to the eternal spheres, “free at last, free at last, thank God almighty, free at last.”
As I age, I’m getting occasional peeks at that future freedom, though it’s more often when I’m in a cantankerous and self-pitying mood and I exclaim,”Oh, God, some day I won’t have to worry about any of this crap, ever again!”
And I’ve seen it often enough in the dying, once they turn a corner and let it all go—the resistance, the regret, the fear and angst—so I’ve got a sense of how that must feel, and the curious liberation it entails. I’m not in any hurry for that point to get here, to be sure, but I’m less afraid of it, I think, than I used to be. It feels less alien to me, and in that sense, it also informs the living that I am doing, which does seem, contrary to much popular sentiment venerating youth culture, to be increasingly more rich, at least internally, with each passing year. Thank you again for the great generosity of sharing your thoughts.