My family needs to take things one step at a time in order to avoid a crippling anxiety. This leaves all planning and preparations to me. My strategy now is to make advance preparations for the summer. I’ll spend most of May in Paris where I still have work to finish and friends to visit. I’m bracing for the possibility that after Paris my needs may be different and a lot more complicated. I hope to extend my network of contacts to find someone to work here ten hours a week, someone who could come from ten until noon to do minor chores, prepare my lunch, and keep me company.
Six months ago I saw things differently. I knew that something ominous was happening in my body. I could follow its progress as my nerves began to fade away like the lights of a town shutting down. I didn’t know yet for sure what was happening. The three neurologists I consulted warned that ALS was a possibility, but it could still be something else. I always keep up my optimism by bracing myself for the worst, and then finding out that it usually isn’t so bad after all. Bracing myself six months ago meant setting things up so I could sleep downstairs if necessary, installing a grip to grab onto getting into and out of the shower, obtaining a bar stool for the kitchen, a cane for walking, and a handicap sticker for my car. I undertook repairs on the back patio and front porch. They were starting to rot and deteriorate. This was in the interest of my family when I would be gone, but they thought I was just being a busybody and kept their distance. I don’t think they ever asked me about my condition. Was it as if talking about it could turn a momentary limp into the clinical prognosis that I was dying? When I did tell my wife, she made well-intentioned comments that were cruel: my diet was at fault. My son is now more receptive when I ask him to drive me to Chicago, and my wife is glad to do little things like making my bed or bringing in my morning newspaper. I know their limits and will respect them. There are some who would say that I should ask more of them. But what I want from them, I want as an act of love, and demanding love by definition means that you won’t get it. On balance, the debt of happiness I owe my family is too great and too private to record here.
A bit more disappointing was the non-reaction of some of my former colleagues of the department I retired from five years ago. I can safely say that I was well liked among most of my colleagues, but the pandemic seems to have pushed people even deeper into a widespread pattern of self-isolation, encouraged and made possible by the social media. The exceptions were Laura, my former Russian teacher during the pandemic, with whom I have formed a deep platonic friendship, and my former student and comrade in the Democratic Socialists of America (DSA), who has become almost like a son to me. I also became friends with a couple that I met in Paris, Pierrette and Serge. They are five years younger than me but products of the same literary and political culture that shaped me. As my generation gets older, it gets harder to find like-minded spirits. Other exceptions are my friends and swimming companions: Herman, a retired neurologist, an old friend, who is now my medical power of attorney; Mark with whom I’ve been swimming for a couple of years now, including when his wife died; Alan whom I visited often when he had cancer or was sick; and of course Jim, my closest friend and colleague who moved to Michigan but stays in touch. I could mention Felix and Barry. There is Mike in St. Catherine’s, Ontario, Kathrin in Heidelberg, Didier and Matti in Paris; Urs in Winterthur, Switzerland, as well as Elke and Laura E., and of course Julie and Alex. No one has been more reliably supportive than Franz and Dan. I’m actually pretty lucky with my closest friends, but like everyone else, they are either busy, or they live far away, or both.
I could be bitter about the reticence of my other friends and former colleagues, most of whom have stayed away and a couple of whom had already decided to shun me for other reasons. But bitterness is self-deception. To put things into perspective, it’s enough just to take a look around, followed by a serious glance in the mirror. This is the world we live in now. I can’t be the only one who notices how much we have all withdrawn into our private spheres. Or maybe I actually notice it more than others because I’m not on Facebook, Twitter, or Snapchat. The glance in the mirror reminds me that it’s not only them. I have also kept my distance from colleagues or acquaintances who had cancer or, in one case, whose wife actually died of ALS. What a stupid mistake that was. So you could call it karma. I don’t want to be bitter, because that’s dishonest and self-destructive.
We worry that we won’t say the right thing to someone who is dying, but probably they don’t expect it. The dying are lonely like everyone else. The brilliant and unsentimental Barbara Ehrenreich wrote a book about all the sentimentality and kitsch that surrounds the typical response to cancer patients and survivors, the pink ribbons and teddy bears—or the billboard advertising slogan for a hospital in our town: “Cancer is tough. We’re tougher.” How pathetic and dishonest is that. But I would advise caution before overgeneralizing Ehrenreich’s point. There is a sincere language of kindness that the educated and well-off avoid because it seems mawkish and meaningless. People have been aware of this inadequacy of the language of consolation for a long time. In one of Turgenev’s best stories, the narrator remarks that the rankest of clichés sometimes pay tribute to the sincerest of feelings. There is a language of kindness which is spoken more fluently by the unfortunate. I noticed this as a cancer patient in the University of Chicago Medical Center seven years ago. A large contingent of patients were well-off white people drawn to the treatment center because of its reputation for excellence. Another contingent consisted of poor Black people from the nearby South Chicago neighborhoods. I had more satisfying, more consoling exchanges with those in the second group.
As a teenager, I read a lot of serious literature before going off to college. Unsurprisingly, it had a deeper impact than the books I read later as a student or researcher. Two of my readings made for an existential contrast: Plato’s Apology with its account of the principled death of Socrates and the Gospel of Matthew (or any of the biblical accounts of the crucifixion and resurrection of Jesus). The Gospels are drenched in guilt and atonement, good versus evil, mortal terror and desperate hope. That’s what some of us surely need. The Apology on the other hand is about truth versus falsehood, humane dialogue, calm courage, and serene reflection. Socrates rejects any sort of philosophical or political opportunism. He maintains his equanimity and good cheer and even consoles the regretful jailer who brings him the hemlock: “My good man, you must do your duty to the polis!” I was more impressed by Socrates than by Jesus. Incredibly cool, Socrates should be bitter but he isn’t. For him, it’s about truth. I don’t blame God or anyone for my “unjust” fate. I don’t blame myself. I’ve lived long enough. I like the verses of Louis Aragon that Pierrette sent me. They resonate with my mood.
Quand faudra fermer le livre Ce sera sans regretter rien. J’ai vu tant de gens mal vivre Et tant de gens mourir bien. [When it comes time to close the book It’ll be without any regrets. I’ve seen so many who lived badly And so many others who died well.]
When it’s time to close my book, I would like to have been good enough in both columns.
Signed,
Andrew (Weeks)
Normal Thoughts 