ALS Diary (part forty-six): Why Does Letting Go Get Such a Bad Press?

After a lunch conversation with Terri in which, inevitably, the topics of illness, pain, and death came up, I read a thoughtful and moving New Yorker article by Peggy Orenstein in which she recollected her father’s old age dementia. The New York Times had an article recently about Dutch communities for elderly sufferers of dementia. I believe that these may be humane and progressive developments that should be lauded. Whether they are the priority on an overcrowded planet is another question. It’s a problem: the fact that even addressing the question of priorities is discouraged by what we call “the sanctity of human life.” We know that the value of life depends on whose life. It’s piously hypocritical to pretend otherwise. If doctors and nurses can only be marshaled in short supply, should a Dutch dementia village take precedence over, say, a medically ill-served poor nation? The liberal mind set responds by insisting that it wants both equally. Fine. But if serving both would take time, which comes first? The infants in the poor country or the elderly in the rich country? Even if this pairing does not—and probably should not—enter into our practical decisions about the one or the other (since such comparisons would be opportunistically abused), even if the equation has no place in our political decisions, the question itself is still real and worth pondering in the abstract. What discourages our doing this is above all the sacred cow that we call “the sanctity of life.” The unspoken priority we favor regarding life will influence other personal and political decisions.

I remember inciting the anger of a friend only a few years younger than me when I commented that in contrast to the Spanish flu epidemic of 1918-20, Covid at least targeted the old rather than the young. My mother, born in 1908, barely survived the earlier pandemic. The majority of the early Covid victims were people in my senior age category. Now of course, there can be no choice between age groups, yet my attitude led me and another passerby to run unmasked to the aid of an unmasked older woman who collapsed on the street. This experience in turn led me to volunteer for a service of driving older, poor, and infirm people to their medical appointments or shopping trips, and it encouraged me to meet in parks with students who were separated by the quarantine from their professors (see blog entry “Notes on the Plague Year”). I wasn’t insouciant about getting Covid. I was relieved when my volunteer service coordinator smuggled me into the first round of vaccinations. When my student friends got too careless about socializing, I told them that our planned trip was off.

Nevertheless, it seemed obvious that the danger to me had to be weighed against the needs of others young and old. My main criticism of Fauci’s quarantine was that it failed to mobilize citizens to take part in efforts for the general well being. A lot needed to be done. Children needed to be tutored. The isolated, especially the elderly, suffered terribly and could have benefited from danger-free phone calls. Some people were braver and more dedicated than me, others less. But in any case, “the sanctity of life”—of the aged in particular—must have entered into many personal and political calculations in various ways. I would insist that I wasn’t wrong to favor the educational needs of those young students over my personal safety. The quarantine administration merely asked people to look out for Number One. The quarantine’s opponents—no matter how naïvely and dangerously!—clung to the view that we are social creatures. People can do the wrong thing for the right reason.

Every decision about life and death has to lie in the purview of the individual who may be motivated by complex and contradictory reasons. I would only insist that the “sanctity of human life” need not be granted the preponderance that tends to be assigned to it now. When we talk about these matters, if we talk about them at all, it’s in the context of assisted suicide, which is framed as an individual “right,” unrelated to social responsibility. However, there is a tortuous gray zone between the sufferer of unbearable pain who only wishes to end suffering and the irrational suicide who doesn’t grasp or respect the “sanctity of life.” As an ALS patient, I’m not in unbearable pain. Aside from numbness and twitching, I’m in no pain at all. Nor am I in despair. As my muscles become less responsive and my body freezes up, I can probably still do what I do now much of the time: lie on the sofa, enjoy books (by switching to the audio versions), and take pleasure in the changes of seasons and the stirrings of my loved ones. But I also know their limits. My cancer seven years ago nearly destroyed my family. End-stage ALS would be far worse. Ivan Ilych suffers inwardly from the perceived indifference and falsehood of his colleagues and family. He is bound to life by his shallow conviction that he has been a good man. Inner relief only comes in sparing others the collateral damage of his fatal illness. It means seeing himself in others and feeling sorry for the suffering he is causing them. It’s his last opportunity to turn his life around. His life ends when he takes complete responsibility for the others. The sanctity of life means for him life beyond individual self-seeking.

The false absolute of the sanctity of life can be recognized even more clearly by considering the ancient Greeks and Romans. Judging by their culture, art, and literature, they loved life as much as or more than we modern people. One measure of their commitment to this world was their greater readiness to end their life for a principle, for truth or honor. They lived and died intensely.

Signed,

Andrew (Weeks)

Published by pfannkuchea

A graduate student at the University of Luxembourg, I study the French Third Republic and liberalism more generally.

Leave a comment