Part one: On Being Overtaken by a Rare Incurable Disease – April 5, 2023
Within the interval of a year I went from a vigorous and strong 74-year-old to the stricken and failing sufferer of the rare disease of amyotrophic lateral sclerosis, ALS, also known as Lou Gehrig’s disease. My benchmarks were solo journeys I undertook, first in May, 2021, to rescue my son in Hawaii, then in August to Paris, where I was isolated by the French pandemic restrictions when not working with my research partner Didier, then back again in November-December to continue with my research project, and finally in April-May of 2022 to resume my collaboration (and find some excellent French friends, who are now represented in this blog). During the first three journeys, I was remarkably fit for my age. During the fourth trip, the onset was unmistakable. My lower legs began to get numb and I exhibited what’s called “foot drop”: my unresponsive toes curled downward so that it became very difficult to put my socks on. It’s harder than I could have imagined to guide my limp snagging feet through the leg holes of my underwear.
I mentioned my condition during that jaunt to Hawaii, because at the time, my son was the one who was suffering from a neuropathy that made walking as difficult for him, forty-five years younger, as it is for me now. It’s as if I had traded conditions with him. Between my stays in Montmartre, where I climbed the same stone stairs and sloping streets on each stay, my initial strength and slow decline were all the more noticeable. At first I consoled myself with a notion from the film Blade Runner: the candle that burns brighter only burns half as long. But it seems that I am basically a defective candle.
I console myself that my son is back to normal, and above all that the genetic test indicates that my susceptibility to ALS is not hereditary. My son’s neuropathy evidently resulted from diet. Mine has some other non-genetic cause which amounts to bad luck. It’s a mysterious disease. Its progression is like some stealthy creature in a sealed compartment, unknowable except by the indirect evidence of my gradual loss of feeling and diminished control over my limbs. The progress of ALS in my case is not painful. There are spreading fasciculations, the spasms and twitches that signal the failure of my motor nerves. It’s like the cold, numb sensation of a leg or arm that has “gone to sleep.” My feet feel as if I had stood too long in deep snow. The upward spread can be resisted with physical exercise, by working out, swimming, physical therapy, and balance practice; but resistance never recaptures lost ground or holds any ground permanently. You can resist but the other side wins. Sometimes I think that resistance only tightens the grip of ALS on my failing body. But I think resisting is preferable to acquiescing. If nothing else, it preserves your human dignity. To maintain my strength, I go regularly to the YMCA. I walk the track, use the exercise machines, stretch my hamstrings, and press weight with my legs. I swim laps in the pool. In the water, I can almost feel as if my body were unimpaired. After the lap swim, I walk against the current in the therapeutic pool. I sit on a submerged ledge and admire the restored color of my otherwise purplish toes. Finally, I bask in the sauna, absorbing the warmth that envelops my whole body. After these workouts, I sleep especially soundly. I never have nightmares. Fortitude and nonchalance are two words for the same mental disposition in my case.
That’s of course much easier to say when you’re 76 and not twenty years younger and in the prime of your life. Nevertheless, I imagine that my attitude could be recommended to anyone in the clutch of this inexorable and invisible disease. Despair could only make things worse. At least it entails very little acute pain.
Part two: Surprises and Disappointments – April 11, 2023
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.
Part three: Reading the signs of ALS; reading myself into Riker’s Guest Lecture – April 14, 2023
Five days ago on the way to the supermarket I felt a disturbing quiver in my lower lip, then a slight numbness comparable to the sensation when the dentist swabs something on your gum before giving you a shot to deaden your mouth. The next few days it was more like the contractions from the shot.
Before retirement I measured time in external involvements, semesters of teaching or the completion of research projects; after my cancer and retirement, I measured it in terms of my convalescence and the travels I undertook on my own. My wife had lost her nerve for travel during my treatment. After the onset of these symptoms a year and a half ago, before I learned six weeks ago that I have ALS, I lived from one doctor’s appointment or medical examination or treatment to the next, always clinging to the margin of doubt, always hoping for improvement or at least certainty. Now that I have a diagnosis (“90% certain”), I instead focus on the symptoms to try to fit them into the parameters, of which it seems only one is predictable: ALS ends in death.
First my feet and lower legs got cold, then my hands and forearms. I learned to cope, to concentrate on balance, to grip objects with both hands, to strategize my movements, whether into the kitchen or upstairs or outside. Recently, I began to monitor, with renewed anxiety, the sensations in my mouth. If the disease is already inside my oral cavity, won’t it imperil my speech and my ability to swallow and eat normally? How soon would that become obtrusive and obvious to others? I’ve been counting on going back to Paris for a month from April 27 to May 27, to finish my collaboration on a critical edition of Paracelsus’s cosmological writings and see my friends. Since my mobility is limited, I’m counting on them to visit me in the Montmartre apartment where I stay. My former student and friend Andrew (Pfannkuche) will sleep in my living room and help me with footwork. I’ll help him in the evening with his M.A. thesis in history for the University of Luxembourg. Seated comfortably, rising with one hand steadying me on a table, nothing seems to be wrong with me; but that will change if my mouth and tongue get numb and limit my speech. Seated I can do many things. My voice sounds the way it always sounded. I worry now every time someone asks me to repeat myself. Is my speech already “slurred”?
Old Mark who lost his wife recently told me that she was in hospice for a year after a worsening of her condition which they both regarded as terminal. Interestingly, he told me and his children that he had done all his real grieving at the beginning of the hospice year. I know that Mark tended to her needs day and night to the point of exhaustion. When the end finally came, he was through with mourning and ready to begin a new chapter. Similarly for me with the fear of death: I went through my stage of fearing and facing death seven years ago when I began my exhausting cancer treatment. I had consulted doctors in three clinics before opting for a treatment that involved a month of chemo in September and 14 weeks of chemo and radiation therapy from October 2015 through the end of January 2016. I was in the hospital when the Cubs won the World Series and Trump won the election.
Recovering in the spring, I had an insatiable craving for books. I began learning Russian and French in order to test whether I had been affected by chemo brain and in order to travel after one last year of teaching and my retirement at 71. I swore off writing scholarly books and articles, except for the ones already in the works, and vowed to make Montaigne my model. I would record my post-cancer state of mind and thoughts while traveling. When I decided to travel alone across Siberia, friends here and Russians in St.Petersburg warned me of the dangers. After rooming with death, I wasn’t afraid of anything. I self-published my Russian journey as Night Train to Kaliningrad, Night Flight to Vladivostok. A year later, I gathered and edited my explorations of my native region in Egyptian Darkness and the Diaspora of Light. That project came to a halt with the pandemic. I then volunteered to transport the weak, the aged, and the poor to their medical appointments. Despite the restrictions I managed to meet with students in parks and train stations. Our conversations gave rise to Normal Thoughts. A Socialist Blog.
At some point, my only travel will be via books—audiobooks that I can have turned on for me when I become physically incapable of holding a book and turning its pages. I have accumulated a list of novels and poetry that should speak to my imprisoned consciousness. Stream of consciousness seemed appropriate, so I tagged Ulysses, which I started in high school but never finished. I’m hoping it will be read by Irish voices. The episode in War and Peace where Tolstoy’s Prince Andrei is wounded and immobilized on the field of Austerlitz suggests the possibility of mystical reflection while weakened and paralyzed. More recently, I found in Martin Riker’s novel Guest Lecture a model for mental activity during the terminal stage of ALS. The novel works because Abigail, the invited guest lecturer, faces both the public challenge of an impromptu lecture and at the same time the abyss of her career and home and the humiliation of failure. It’s a kind of professional death in which, as if before the gates of annihilation, she must first acquit herself decently and justify her prior existence. What will I say for myself, think to myself, at the gates of annihilation?
Georg Lukacs, the long-neglected theorist of Realism whose critique of Modernism shows a deeper understanding of literature in its relation to the world than many a postmodern critic—Lukacs observed that the material of modern life is too disordered, too compartmentalized, to serve the purposes of high narrative. The modernist as realist therefore invents an exceptional situation that permits an objective investment and the subject’s reflection on it that could not occur in everyday life. Hans Castorp visits his cousin in an Alpine sanatorium and remains in the rarified gathering of the Magic Mountain for seven years, until the tensions and paradoxes of pre-1914 Europe have been intimated and animated. Franz Kafka lets his thoughtless strivers face a mysterious arrest or a strange summons. Their vain struggle to make sense of their world exposes its enigmas and absurdities. Riker’s Guest Lecturer is in their tradition. Her vain summons to a job she was not meant to keep and her academic judges’ inexorable verdict against her—these are framing elements that craft the stage on which meaning can be refined out of the hectic unreflective disordered stuff of modern academic life. The framing of her tale gives it its meaning. Will I see some light before the curtain falls and the theater of my life goes dark?
Part four: Another Day, Another Doctor – April 19, 2023
Zallek will be my last one, so it’s good that we got on well. He reserved two hours for me in order to gauge my reflexes and responsiveness. If he sees a fair number of ALS patients, I can imagine that he has to blunt the force of the diagnosis and perhaps struggle with disbelief and the reactions of those who blame the messenger for the bad news. Since he seems to genuinely care, it may be a burden. If so, he may have been relieved that I was cheerful, uncomplaining, ready with my questions, but not demanding that he know or do more than humanly possible. For me, it meant a lot that he didn’t sugar coat things when I talked about an “exit strategy” and about how I didn’t want to burden my family. My cancer had nearly destroyed them. I know better than to expect the impossible from them this time around. I let him know that his colleague Dr. Herman Dick is my medical power of attorney who knows my wishes and is aware of my personal situation.
Dr. Zallek is the most agreeable neurologist I’ve seen in my year of consultations and EMGs, the most agreeable, that is, since Herman whom I consulted first and who launched me on my path of treatment and examination. After Herman was Dr. Mo, whom I only consulted once. He was also no sugar coater. He maintains a clinic in his native East Africa and I had the feeling that, coming from a place that has to ration medical resources, he balked at prescribing the exorbitantly expensive IVIG infusions without any indication that I was treatable. He would have been right. After Mo, I saw Dr. Kelly of the University of Chicago at Orland Park. He was a humorless electrician who, losing no time on pleasantries, took out his toolbox and began delivering the unpleasant shocks of the EMG. Next came a nerve biopsy by Dr. Horowitz of the U. of Chicago, followed by an EMG administered by two rather thorough doctors whose Hispanic surnames escape me. My bad joke about them was that they must have learned their procedure in a CIA torture school in Panama. They didn’t soften their shocks with gentle gestures or kind words, but that’s ok. I would have been thankful for the rudest manner if paired with an effective treatment. Then I saw Dr. Rezania of the University of Chicago neuromuscular clinic. I saw him twice. The first time he told me summarily that he was not at all ready to diagnose me with ALS. The second time he just as summarily reversed himself. He didn’t draw it out or make a long face. “You’re an educated man, you know what that means.” Yes, thanks, I did know very well what it meant.
Again, I must repeat that there is no point blaming the bluntness or brusque manner of the messenger when in fact it’s only about the message. No sensible person pretends otherwise. Give me the rudest manner if only it’s accompanied by effectiveness. But since in fact there is no effective treatment or cure for what I have, I did appreciate the sympathetic attitude of Zallek. My rejection of any artificial prolongation of life and my frank question about an exit strategy elicited an honest response on how and under what conditions oxygen might be administered on a temporary basis without violating the terms. I am the one who sets the terms, he assured me. I set the terms. Older patients typically stop eating to signal that they’ve had enough.
A correction: when I was listing my kind and responsive friends, how could I forget to mention those first responders Tony Crubaugh, Tedy Nikolova who gave me the cherished martinitzy, Jim Pancrazio, my excellent chef, and now Chris Breu, who is sharing painful but vital information with me. A reserve cadre of friends!
Part five: Thoughts on Remaining Human – May 1, 2023
On my way to the Credit Union this morning I happened to hear something on my car radio that I found moving. During the Second World War, while the Wehrmacht was inflicting its frightful siege on Leningrad, Shostakovich composed his symphony in honor of the suffering city. When the symphony was finished, the defending Soviet forces set up loudspeakers and broadcast the performance toward the German siege lines. One of the German soldiers later recalled the effect: “It began to dawn upon us that we would never conquer this city. The besieged were motivated by something more powerful than terror and starvation: their will to remain human.”
We know now what a cauldron of horrors the besieged city was. Even the celebratory account of Harrison Salisbury’s 900 Days mentions the innocent Soviet victims who fell prey to the NKVD. Fuller accounts supplement the official narrative of a truly heroic resistance by reporting the depredations that included cannibalism and brutality. One can see why historians might balk at ennobling history. But one can also see how a humanely sensitive German soldier in the siege army might have registered the cumulative effect of Soviet resistance and factored it against all that the Wehrmacht had inflicted on the Soviet people. One can imagine this hypothetical thoughtful soldier peering out of the trenches at the outer districts of that city of culture and art and listening to the taut strains of Shostakovich’s modern masterwork. One can imagine the soldier mulling over in his mind the questions, who is more resolute, who really deserves the propagandistic verdict of the subhuman Untermensch? I can imagine the whole complex equation reduced in the soldier’s mind to the formula of a “will to remain human.” Perhaps the soldier was also struggling to remain human. Perhaps we all do that in the face of death, the ultimate dehumanizer.
I’m not going to try to track down the source of the anecdote. I prefer to accept it as a proposition regarding a certain kind of humanism, one ignored by Sarah Bakewell in her new survey of the history of that concept: Humanly Possible. I mean the neglected humanism of the finest socialist thinkers and authors, of Eugene Debs, Bertolt Brecht, or Victor Serge. Social humanism is when the individual acts as part of a collective, the besieged city or the oppressed class. It is humanism by and for the people, humanism of a sterner stuff. For only the conscious collective makes such volition possible and there is no more proper object of its action than the collective whole of life that surpasses the life and death of the individual. Social humanism would encompass all previous Renaissance or modern humanists, secular or spiritual. It would render explicit what was only implicit in an individually or religiously articulated value system: that the force of each realizes the force of all life, of all human beings. It does so without transcendence. Social humanism was voiced by Eugene Debs: “While there is a lower class I am in it. While there is a criminal class I am of it. While there is a soul in prison I am not free.”
If I had to choose a designation for the broad front of opposition needed to advance against the forces destroying the earth and endangering all life and humanity, it would be social humanism. It would reject the post- and transhumanist fantasies and affirm the social as against the me-first specialism of capitalist-consumerist society and its individualistic or nationalistic variants. Since adherence to social humanism would be expressed in mindful socializing, it would confer on its adherents confirmation by alleviating the worst pangs of meaningless isolation, thereby creating a more humane society within our soulless system. Its ethos of solidarity should take aim at misinformation and false consciousness sustaining the system in which we now live. Determining what this means in practice could and should give rise to the open-ended debate that energizes any broad movement. Authority would accrue to those most imaginative, courageous, consistent, and effective in challenging our destructive system, our personal and national wars of all against all.
Addendum: In listing my friends, I forgot the utterly kind and reliable Sarah, so reliable that I seem to have taken her for granted. Tomorrow: my last trip, to Paris and back.
Part six: A Long Saturday and into Sunday Three Days Before Paris – May 2, 2023
First Felix came over for a long morning conversation about politics, the allure of Adorno, his Ph.D thesis, and his new gig at a Catholic Benedictine College near Naperville. At 1:00 pm I went to the conversational luncheon of the volunteer tutoring program I’ve been involved with, hoping to get some leads or some assistance finding household help in the summer. After this, I picked up Erik and his friend Ben, whom he knows from his French class, and brought them over to our house for a long conversation on politics, literature, and travel. Both are very bright and open-minded young guys, Ben though only a freshman is both self-possessed and eager to absorb suggestions, ideas, names, and recommended film or book titles. Midway through the conversation, Alan joined us, bringing beer and pizza and chicken livers. Alan can wax professorial, more given to lecturing than exchanging views and arguing. I sent them all on their way before eight and tried to relax. My intention is to invite guests, friends old and new, who might feel comfortable stopping by when I’m no longer able to get out. It seems that every day my wife and son become kinder and gentler, more understanding toward me. They don’t ask but they sense what is happening. At first, my affliction threatened their confidence in stability. Now they can see that I’m increasingly helpless but doing my best. I don’t intend to turn into a high-maintenance basket case burdening them forever. I’ve ruminated my way to one possible exit strategy, the only one that makes sense, neither suicide nor a deliberate unplugging of a machine. It’s what the old and infirm have always instinctively done. It of course requires determination.
On Sunday, I read the NYT opinion pieces and NYT magazine. One piece was about the contributor’s autism diagnosis and about how this, and all other pseudo identities, confer authority and identity. I’ve been thinking and commenting about this for a long time. I’ve always seen it as the nearer side of an historical watershed in which opponents of the system went from actively seeking change to claiming and trading on victim status, what I used to call, cruelly, ‘the whineocracy.’ Another article in the magazine section was about Twitter as a “vibe-detection machine.” The article convinced me that the social media are so pervasive and overpowering in their ability to shape all social communication, that resistance looks more and more futile. Totalitarianism is not quite the proper word for it. The social media act more like a vast tar baby into which we are lured by our impulses of resentment and vanity. Struggling against it only gets us in deeper. Resistance would be up against the nuclear menace of A.I. with its vast new potential to unleash an “arsenal of mass destruction” of bots and deepfakes.
What is the defense against this onslaught of digital falsehood? During the early modern religious conflicts of the 1500s and 1600s, the “real presence of God” was a tenet that distinguished the spirits and commanded allegiance unto death. Now I can imagine that a human “real presence” beyond all mediation and representation might become the new criterion for any truth worth dying for. How that would function in reality I do not know. Images come to mind of the dissidents who conducted their conversations in parks or open spaces to avoid the bugged and wired surveillance of the state, images of stalwarts who sacrificed themselves for friends and family. How could such a cloistered resistance ever gain momentum? It would have to assume the shadowy presence of Mazzini’s secretive Young Italy, stealing its way toward its own Risorgimento. And clandestine societies are vulnerable to spies and provocateurs. Yet revolutionary movements have succeeded, despite those traps and obstacles, because their ideas were so powerful that even their opponents inadvertently advanced their cause.
Actually, the analogy with the Lutheran doctrine of the real presence of the trinitarian deity is not so far-fetched. The Hegelian strain of Marxism has always recognized that theology had embodied the ordinates of social theory and politics. The medieval hierarchies were embodied equally in theology and society. The sixteenth-century’s revolutionary challenge to medieval hierarchy likewise advanced on two fronts: every lay believer held authority based on a reading of scripture (though of course not all readings could be valid if authority was to be based on truth). Real presence centered and anchored the individual and the real community of the faithful. Where it went wrong was mainly in expecting scripture to yield a single conclusive truth. Instead it yielded as many competing interpretations as society knew competing class interests. This notwithstanding, faith in the truth of a “real presence” moved mountains and inspired communities. Real presence shifted the source of meaning and the object of faith from distant exalted instances to the here and now, to a real presence of us. Who can say whether such a shift is still conceivable now. Could real groups congregate, debate, resolve, and network to effect real change? I don’t know. What I do know is that many are starved for the real community and deeper significance it might embody. I know because I am one of them and can see it in others who are starved for human presence but stifle their hunger with sawdust from the social media buzz. Real human presence: the hand on the shoulder, the intimate tone that cannot be faked.
Part seven: Arriving in Paris and Acclimatization – May 2, 2023
On Thursday morning, Didier met me at the airport and we got to work as soon as we arrived in the rue Tholozé (after we had eaten at a deli across from my apartment). We worked all afternoon. In the late afternoon, Pancake (Andrew (Pfannkuche)) arrived from Luxembourg. On Friday, we kept to the same routine. When we walked down our sloping street to shop in the rue Lepic, I nearly collapsed after mastering the upward slope and the narrow curving steps leading up to my door. Once, I even sank to my knees and had to crawl across the threshold into the kitchen. It’s shocking to realize that in the year since my previous stay in Paris, I have become a near invalid. But I should be grateful that I can walk at all, and I am in fact delighted to be here.
By Saturday, I’ve caught up on my sleep. With Pancake I’ve walked as far as the Place des Abbesses and in the opposite direction as far as the rue Caulaincourt. It’s good to return to what were my haunts off and on for two years. The higher end of my street is the passageway up to the Moulin Galette and then over to Sacré Coeur, an easy five minute walk which is now as unattainable as Mount Everest. I’ll have to let Paris come to me. As soon as the weather clears, I can watch it from my window.
The Café qui parle where we ate dinner filled up inside with what looked like a theater class, nice-looking young people in their early twenties of both sexes. Their table rapidly expanded across the full interior. They all had a certain flair. One was dressed and trimmed as a Charlie Chaplin duplicate. The din made conversation impossible, but it was an agreeable din nonetheless. The Café qui parle is a nice but not at all flashy corner café on the corner with rue Caulaincourt, the lower end of which is less touristy and less busy than what it soon becomes after a few blocks. I’m not in the least put off by the commotion of young people all around me. It’s the life that will go on. Pancake is enthusiastic and I share his pleasure being here. I’ll watch my step. I don’t want to leave with a broken limb.
I was reminded of a walk down the Nevsky Prospekt several years ago after drinking a little too much at a lunch date with the Buryat uncle of my Russian tutor. I felt dissolved in the crowd, the individual specimens of which struck me as quintessentially Russian. Finally, after taking refuge in a tiny park in the shadow of a regally enthroned Ivan Turgenev, I was shocked out of my reverie by the terrifying approach of a man whose face had been destroyed, whether by cancer or some disfiguring accident. The sight had reminded me of my deceased older brother, an alcoholic. I feel guilty for having turned my back on him to let him die alone. Paris has a back alley of memory into other back alleys of memory with side alleys of dream and precipices of death.
At times like this, I can imagine identifying with the cinematic fiction of multiple worlds. It’s as if you could fit into another realm of your life and leave the others behind. If only you could leave your illness and sorrow behind. People have always been tempted by the idea of doing this, even to the point of starting alternate identities with alternate families. But I would only want to merge my own into one.
Late Sunday morning, Pancake’s friend and classmate Hippolyte stopped by. He had been visiting his mother in a Brussels hospital and had decided to spend the rest of the long May Day weekend first in Paris and then back in Luxembourg. Pancake had rendezvoused with him Saturday night and invited him to stop by at our apartment. He is an exceptionally pleasant and articulate young guy with the enviably European attitude in matters of national belonging, a lightly worn adherence to his country combined with a well-informed interest in other countries. His English is excellent so that I didn’t take advantage of the opportunity to speak French with him. I learned more about Luxembourg in a half hour than I had known before. Not surprisingly he affirmed that connections are as important there as in the Austria of my experience. He traces his family to an earlier wave of Italian immigration prior to the later Portuguese influx. I invited him to stop by again when in Paris and he extended the same invitation to me for Luxembourg. I wish I could take him up on it.
Part eight: An Early May Morning in Paris – May 4, 2023
It’s a crisp May morning two days after May Day. I slept well and we undertook a small expedition into the rue Caulaincourt for groceries and a sidewalk cafe. The Café qui parle wasn’t open yet, so I sat on a bus stop bench while Pancake took our shopping list to Franprix, and I watched the high tech operation of hoisting furniture up through the front window of a fourth-floor apartment. The air had that mixture of night freshness and matinal exhaust fumes so typical of metropolitan streets everywhere, though of course the mix is always unique. I don’t dream often, but just before waking up, I dreamed of giant bats flying out of a box in the room where I sleep at home. They were the size of rabbits and flew out of the box in big clumps. One clump thudded into my back as I fled from the bedroom into the hallway.
In the afternoon, my old friends began to arrive. First Didier for our regular workday, then Matti whose youthful intelligence and honesty are always refreshing, and then Urs who had arrived from Switzerland for a three-day working visit. We ate on the sidewalk of Tentazioni across the street, had coffee and desert in my apartment and went on working, each on his own in my living room. Matti left first, then Didier. Urs, always warm-hearted and now concerned about my health, stayed for a modest Abendbrot with Pancake and myself. It was exhilarating but perhaps a little too exhausting. I didn’t sleep well, which is perhaps a belated effect of a time change. That would make sense if what they say is true: that it takes one day for each hour of time-zone change, meaning that I need until Thursday. After a bad night, it’s now Thursday and I hope to sleep better tonight. Over breakfast Pancake and I talked about the social phenomenon of cutting off former friends either silently or by means of a kind of resignation letter terminating a friendship. We’re convinced that it’s a symptom of whatever ails our sick society. What is nonetheless impervious to this social plague is in this case the comradeship and the bonds created by collaboration and shared interests. I really came to Paris to experience that, and yesterday I basked in it.
I’m now a full week into my Paris sojourn. I’m very pleased that my wife sends me little messages about the way she styles her outfit each day to echo the colors of some painting by Kandinsky or Monet. She also sends me the poems she writes and distributes to her poetry-loving local friends. I appreciate her readiness to share her life with me again. There is no acknowledgement or question about my condition. That’s just as well.
Part nine: Friday and Saturday in Paris – May 7, 2023
Again, I got up relatively early, before seven today, and the three of us, Urs, Didier, and I, worked through much of the day, pausing at one o’clock for a carry out lunch of bakery pizza. This has the advantage that it gives me a full-day of effective activity and hearty companionship with a minimum of movement. By 3:30, I am tired and lie down in the adjoining bedroom for a rest. In the evening, the four of us with Matti go to BiBiche for dinner to see Urs off. He leaves tomorrow and he and I both know we’ll never see one another again. I’m hoping for as little drama as possible.
So now we’ve had our dinner and parted ways. I’ll see Didier on Monday, Matti toward the end of my stay, and Urs—my cordial, loyal, kind, and honest-to-the-core friend Urs—perhaps never again. We both know it in saying goodbye. I need support for every walk to and from my apartment so Urs is resolved to give me that support now. We say a simple goodbye back in my apartment.
It’s night time. During the evening, it rains off and on. From my window, I can see how the paving stones gleam. As always, the nearby streets are full of tourists and locals looking for a good time. I help Pancake edit his thesis and now I’m off to bed. Since I’m not mobile, I have to imagine this city of countless cafes and restaurants, irregular streets and lopsided courtyards. Most of my images are borrowed from art and literature, but I also think of the fall dusk parades on the rue des Abbesses.
Saturday early morning. I sleep well and am exercising on my bed before breakfast. Saturday mid morning: we edit Pancake’s thesis, go for lunch at the Café qui parle, have coffee at a sidewalk café, and buy fruit at one of those colorful fruit stands that grace every other street in Paris. Back in the apartment, we finish editing the conclusion of his thesis. I am surprised to realize how similar our views of history are. For as long as I’ve known Pancake, I’ve been berating a proclivity for what I call “reenactment politics” in him and the members of our circle of DSA members and sympathizers. I am always accusing them of an unhistorical outlook, as if by calling themselves socialists they could somehow board a time machine and disembark in an October 1917 Petrograd. Now I can see that the passion of the historian, the passion for truth, is stronger than any sort of historical play acting.
His thesis is focused, well-documented, and convincing, good work in my opinion.
In the evening I want to see a new Norwegian satirical film called Sick of Myself. It’s about young people perpetually online and absorbed in the narcissism that this engenders. When the guy begins to achieve online fame, his girlfriend Singe is envious and eager to catch up. She envies the attention lavished on victims. When she happens to see a warning of a medication that can cause a hideous rash, she procures and takes great quantities of it until the hideous rash appears. The movie poster shows her bandaged like a mummy in a hospital gown, a cigarette in one hand and her cell phone in the other, enraptured by her success. This strikes me as the perfect satire of our sick digital society (which is perhaps a magnified version of my involuntary condition). Self-mutilation strikes me, and obviously many others, as intrinsically comical. But the film’s satirical distortion is a magnification of a simple fact: In the digital world, self-aggrandizement is ultimately the same as self-obliteration.
Unfortunately, the oldest continually operating cinema in the world, Studio 28, only a block away, does not offer Sick of Myself among its multiplex selections. Too bad. Maybe back home.
We watch a couple of episodes of Little Britain, a comedy series that could not possibly have been made or tolerated in the US. I hadn’t watched it for years but I still find its illicit black humor quite funny. Pancake wisely goes for a walk by himself and I take a shower and head for bed.
I need to find a way to get more targeted exercise. Physically, I miss my YMCA routine. I miss the gym workouts, walking the track, lap swimming, walking against the current, and finally relaxing in the sauna. I have nothing comparable here and I can feel the difference.
Part ten: My Second Week in Paris – May 9, 2023
From Sunday to Monday, I slept better and then felt better getting up, but by 4 pm I am more or less exhausted. We’ve worked well today and I am confident I can finish the project I came here to do. After a modest dinner, Pancake and I walk to the Place des Abbesses, buy ice cream, watch people pass by, and, since it looks like rain, beat a path back to the apartment. It’s a gray evening, but like every evening, it’s loud with the voices of revelers and tourists in the street outside. Taking my hearing aids out I’m left with a distant muffled roar.
Perhaps because my sleep cycle has been shifted, I now dream often just before waking up. I retain my dream in my waking state. Sometimes the dreams have a disturbing or frightening content, but I do not experience fear or alarm in my dreams. In my most recent dream, I found myself mounted on a bicycle at the confluence of several wide multi-lane thoroughfares which seemed to lead toward the divergent localities of my past. I was aware that a bicycle was not suitable for my powers or for the journeys that lay before me, but it didn’t seem to matter much. I had all the time in the world and would arrive in any case. In other dreams, I am pursued by assailants or giant bats, but I am not really alarmed or terrified. I also find that in my dreams the neighborhood around my apartment is beginning to fade into the terrains of my past life. They all consist of human places which are at root the same because human beings are the same. The past: isn’t it just the endless doors I didn’t enter?
What is unfortunately changing is my physical condition. I notice now that typing is becoming more difficult. I’m constantly hitting wrong keys. Walking is more of an ordeal. In my imagination, I like to think that if only I were back home in the YMCA, everything would click and I would leave refreshed and strengthened. When I grip things now, I get painful cramps in my forearms. Even a short walk exhausts me and leaves me bathed in sweat. My legs feel on the verge of giving way with every step.
Part eleven: An Intermittently Rainy Day in Paris & the Fisher King – May 11, 2023
On Tuesday night, I went to sleep a little earlier and slept soundly throughout the night. To anyone with ALS or undergoing treatment for cancer like me seven years ago, I would strongly urge that they always aim for a good night’s sleep. It’s therapeutic, good for the mind and for the body. Loss of sleep is the way those maladies make us their ally in our own destruction. You can defeat them, or at least resist them for as long as possible, by refusing to obsess about them. If our bodies are an open city, our minds can still be an invincible citadel. Concentrate your resistance on holding the fort of the mind. That might mean living in the present, escaping into the past, or floating in the imaginary. We train ourselves to avoid doing this because we are accustomed to living and working our way into the future. With only a cliff in front of us, why not float or backpedal as much as possible? The closer the end, the more reason to dream. Let dreams and death work out heir affinity.
In the morning, I worked as usual. In the afternoon, Pierrette paid us a visit. Pierrette is a delightful amateur who sings and recites poetry with irresistible enthusiasm and in a voice that is captivating the way a hearty home-made meal is more appealing than the professional production of the finest chef. Pancake repaired to the cafe which I refer to as his “clean, well-lighted place,” though I’m not sure if he mumbles the nihilistic prayer of Hemingway’s character in that story. We mostly talked about the photos she took of her most recent trip to Iceland, a landscape this child of the Mediterranean adores, or of her native Gruissan, or her other travels. She did ask me about my condition and responded with a matter-of-fact sympathy to my report. We decided that on Saturday we would all meet again with Serge and Pancake for a walk through the rue Caulaincourt. I was gratified that she recited, at a seemingly random point in the conversation, the verses of Aragon that I liked so much, “Quand faudra fermer le livre / Ce sera sans regretter rien. / J’ai vu tant de gens mal vivre / Et tant de gens mourir bien.” On Sunday, we will see them again when Kathrin visits from Heidelberg.
I’m thinking about Wolfram von Eschenbach’s Parzival. It’s an archetypal German Bildungsroman: The fatherless youth grows up overprotected and uncouth, and nonetheless becomes an aspirant for the knighthood of the Holy Grail. (My version of the grail would be the cultural and literary tradition which is as imperiled as the oppositional culture of books and reading.) The raw youth arrives at the court where he would be destined to become the anointed successor, where the mysterious Fisher King lies suffering from a painful affliction. In the night, everything changes and Parzival is ejected to wander again in desolation and uncertainty. His mistake: he failed to ask the suffering king the simple question, “What’s ailing you, father?”
Part twelve: Memory as an Escape back to Reality, Dammtor Station – May 12, 2023
Now that I’ve realized that nothing is more important than not obsessing about my condition, and that one of the best palliative medications is memory, I’m indulging mine and finding that it’s more than ready to do its part. Pancake is a willing audience with his experiences that resonate with mine.
This rainy Friday in May reminds me of a perpetually rainy Hamburg where I arrived—clueless—on a Friday in early September 1967. Since it was at the Dammtor station that I arrived at the university and where I frequently came and went, the neat little remnant of the prewar city stands out in my memory. I recall exiting to face, utterly bewildered, the battle lines of police and protesting students. It seemed to me that such battles were weekly occurrences, that every week or so some sensational report or rallying cry galvanized the milling crowds and transformed them from a neutral mass into a polarized and politicized force. There was the death of Che Guevara in Bolivia, the escalations of the Vietnam War; the assassinations of Martin Luther King and Bobby Kennedy, and, closer to us, the unfolding sensational events that exploded in that smaller Federal Republic of Germany like bombs in a fortified chamber. There was the scandalous opening ceremony of the university where leftist students—dressed formally in suits and ties—held up a banner ridiculing the medieval attire and retrograde mentality of the officers of the university (“Unter den Talaren, der Muff von Tausend Jahren“). German favors pithy rhyming sayings, and this banner was a gut punch that declared that beneath the ridiculous formal headgear of the strutting professors moldered the sordid residue of a millennium, or of the Thousand-Year Reich! One of the ridiculed professors stepped out of line to scream at the protesters, “You all belong in the concentration camp!” A bit of research confirmed that he had experience putting people in concentration camps. The university erupted in a fury that flared up again throughout the academic year 1967-68. Since parallel uprisings and stirrings were happening almost everywhere, it became the fabled year ’68, a year that acquired the same epochal ring as 1848.
Historians might want to argue that no such juncture exists; that 1968 had been years in the making; that it differed from country to country; and that it blended into the years that followed. All well and good. But I still have to defend the notion of an epochal turning point with the shorthand of “68.” At a certain point, the “movement” that had been gaining momentum with such antecedents as the previous year’s Pentagon March and the anti-Shah demonstrations in West Berlin acquired a critical mass. Previously quiet centers such as the relatively sedate Paris exploded in watershed eruptions in that year. Large numbers of previously apolitical or conventional young people experienced a change of heart. My recollection is that in Hamburg every student I knew was excited by the change and partisan to the charismatic standard bearer of the Left, Rudi Dutschke. After all, hardly a member of that generation had grown up outside the shadow of authority figures who had conformed to or served under the Nazi regime. The lesson we absorbed was that conformism and blind obedience to authority were evils condemned by history.
This was the antiauthoritarian phase of the extended 1960s. That phase had to take place for several reasons. First of all, no one left to his or her own devices could transition from one system of beliefs to another without a transitional phase where everything is in doubt and the world is up for grabs. Second, more than in our time of disparate media outlets, the events of 1968 were dropped on the population like bombshells, not filtered and funneled via our cell phones. I remember the hue and cry in front of the auditorium when someone shouted out the death of Che. I remember the German woman staring over my shoulder and gasping when I waited for my train at Dammtor station with the murder of MLK headlining my newspaper. I remember the outcry of my fellow dorm residents in the television room when it was confirmed by handwriting experts that German president Heinrich Lübke had indeed built concentration camp barracks during the Third Reich. Of course, even then the news was mediated, but mediation is a matter of degrees. By comparison, we were hit by those bombshells harder and more precipitously than anything today. Today we all take in our news on a private basis. I doubt if those instantaneously galvanized crowds are possible now. Someone needs to study this. It’s rain-swept now in Montmartre, the way it always seemed to be raining at Dammtor station.
Part thirteen: A Splendid Day with Friends and Memories – May 14, 2023
It’s a beautiful mild and sunny Saturday. Serge and Pierrette came for lunch, bringing an unlabeled bottle of red wine from her home in Gruissan. It had the taste of simple friendship and hospitality that I associate with Narbonne, which is next door to Gruissan. When I first found out where she is from I called her Nausicaa, and her Occitan home was for me the generous land of the Phaeacians which shelters Odysseus on his homeward journey. This association goes back to a simple encounter, meaningful only to me, during my three-day journey hitchhiking from Paris to Barcelona in July 1968 in order to study Spanish at the Intituto Eurolingua language school. To steal a march on the other hitchhikers, I traveled in a suit and tie with my things in a suitcase, so that I looked like a stranded bourgeois. It worked. After two days I was trudging, suitcase in hand, through the poorer outskirts of Narbonne. By then, my white shirt was bedraggled and dirty and I was sweating in the heat and dust. Two old men at an outdoor café motioned me over to their table in the shade of a tree. They poured me a glass of red wine and asked me what I was doing there. One was a veteran who had fought for the Spanish Republic. He spoke Spanish and told me about himself and his friend. I explained where I was coming from and heading. They didn’t have any ulterior motive to invite me to their table under the chestnut tree. It was pure hospitality. They could see that I was tired and thirsty and a stranger. I never forgot the gratuitous kindness of these two old guys. They weren’t rich, more on the plebeian side. I’ll always remember their friendly and bemused manner.
In Barcelona, I was quartered by the school in an apartment in las Ramblas that belonged to an older Spanish lady. Luckily, another student was quartered in the same apartment, a student half-French, half German-Jewish, who two months earlier had taken part in the French May-June events. He had been expelled from the Sorbonne or from France altogether, I can’t remember which. He knew a lot and thought politically at a sophisticated level. Speaking German and sometimes Spanish, we spent a month talking politics and history while playing the pin ball machines in the back alley dives. Franco’s Guardia Civil still patrolled the streets. More than anyone else, I owe my political education to him. On August 21, we listened to the radio news in the old Spanish lady’s apartment as the Soviet Union invaded Czechoslovakia and crushed Alexander Dubcek’s “Socialism with a human face.” I had spent Easter week in Prague with a West German student group. For us students, Czechoslovakia opened up a freer spectrum of political options than the Cold War polarization allowed. The envisioned freedom of 1968 was suddenly narrower.
Is there a poet or alchemist who can distill and balance all the sweetness and bitterness I have in me?
Part fourteen: Memories of Comradeship, a Night of Desolation – May 16, 2023
Last night, the balance tipped from sweetness to bitterness and I had a bad night. There are rules I have to follow.
My only way out is into the past. So speak, memory! Pancake has begun to remind me of my erstwhile close friend and comrade in the antiwar movement, Gregg Gauger. Same long hair. Same physical enthusiasm when speaking of the quirks and oddities of politics. How important it was and is to have a comrade you can rely on and work with. Gregg took pleasure in the layout and production of our antiwar publication. I was the content guy in charge of writing and editing articles. We both collaborated in distributing the paper at the gates of Chanute Air Force Base on Fridays and in meeting dissident airmen on Saturday nights. I hung out at one of the cafeteria tables frequented by leftist students in the Illini Union. Later, we repaired to the Wagon Wheel, a slender dark space of a bar where the outcasts gravitated: radical students, gays and lesbians, hippies, bohemians, and assorted weirdos and misfits. There was always something to rage against or ridicule. The Left was freer and had a better sense of humor. The countless Verboten! signs hadn’t yet constricted our mental landscape. For anyone interested, I wrote a blog entry with illustrations from the paper about “Remembering the G.I.-Student Antiwar Movement.”
There are other moments that glow in my memory such as my arrival in West Berlin in September 1972. It had been four years since I first studied in Hamburg. During that time, I had finished my BA and MA degrees, taken part in the antiwar movement, spent the better part of a year working (and reading) as a dormitory night clerk, traveled widely in Mexico, and worked in a truck trailer factory to save up for another year of study in Germany, this time in West Berlin. Arriving there at Tempelhof Airport in September 1972, I was like a cowboy at the end of a trail drive. I’ve never felt freer.
The airport bus left me at Bahnhof Zoo. Vis-à-vis, I spotted an antiwar demonstration and joined. With impressive discipline, well-adorned banners, and thundering chants, we marched to the Amerika Haus, listened to political speeches, raised our fists, sang the Internationale, and then dispersed. I walked a few blocks up the Hardenbergstrasse to the Technische Universität (TUB), and found my way in, since I was hungry, to the student Mensa. Unaware of the proper procedure, I found myself at the cashier’s without the requisite token. She suggested that I ask the student behind me if he had an extra. The student (whose name I learned was Gerd Martens) did have one. We introduced ourselves and sat down to eat together. Eventually, I would visit him and, after a couple of months, move into a spare bedroom in his WG or communal apartment. Because of Gerd and the other German students in the WG, I experienced one of the happiest and most fulfilling years of my life.
Everyone went about under the big tent of oppositional politics. But it wasn’t the politics that made the year memorable. After that first march, I realized that the same demonstration would be repeated every week with minor variations. I came to see this as a German trait. If at first you don’t succeed, just keep flogging it over and over. It was the people I met and the time we spent in the atmosphere of our Wohngemeinschaft that made my year in Berlin unforgettable. I’m what you might call an introvert, but the most significant junctures in my life all turned upon the people I met. The most important took place at the end of the summer of 1987 in Elfie Monsberger’s apartment in the Ottakring district of Vienna. Elfie and Veronika had been swimming at a nude beach on the Danube. Elfie had gotten hold of a package of choice meats from a Schlachtfest in Kärnten. This turned out to be a feast to begin the best years of my life. How easily I could have missed out on it! Nothing else counts as much. Nothing but that we met in those last days of summer in 1987. Every few days we declared to be the last good weather of the fall and took advantage of it. I drove from Baden around the Wiener Gürtel to the Währingerstrasse so we could spend the evening in some pleasant Heuriger. I’m still hoping for that last evening together.
Part fifteen: Walking Is Getting Harder; Solitude and Memories of my Children – May 18, 2023
Pancake is back in Luxembourg to defend his M.A. thesis. I don’t mind a bit of solitude but my mobility outside the apartment is limited. I don’t fancy the prospect of a broken hip or leg. I’m noticing that it’s harder to maintain my balance or climb the curving narrow staircase that leads up to my second-floor apartment. There is something unexpected about how ALS spreads, which might explain the “lateral” in amyotrophic lateral sclerosis. It’s been a year since my feet got numb, and the numbness is slowly intensifying, but instead of rendering my feet totally useless, it’s spreading laterally to my arms and now to my mouth. Is it only in my imagination that I’m having difficulty articulating clearly? It seems to spread first laterally before boring down to the nerves that operate the voluntary muscles of my lungs, where ALS is said to deliver its coup de grâce. I have difficulty walking like a feeble old man, but I do walk.
When my children were newborn, I was painfully aware of the fragility of life. I have the same feeling now. The freshly kindled flame of life that was flickering up in them is a dying ember in me now. It’s actually comforting to imagine myself united with them in a natural process that encompasses us all. When I think of the love I felt for my children when their presence in my life was new and contingent, it’s evident that that love always harbored a mystical awe for our miraculous continuity and unity. As they got older, I was awed by their courage: my brave daughter bracing herself as we were bussed at night from the dark harbor of a Greek island to the winding streets of its high village where we would negotiate for keys to the house we had rented. Everything was strange, but to her acceptable. Or my son: finding his way on a journey on which only his ideals offered guidance, determined to go on, even when he seemed utterly lost. Unfortunately, what children need from a father isn’t mystical awe but positive involvement in their lives. By ceding that to my wife—a wonderful but assertive mother who took charge of every adventure—I lost my opportunity to develop the mutually rewarding relationship with my children that I enjoy with other young people their age. Nothing could be sadder.
But what is this that I’m seeing? In my mind’s eye is a little girl who could be my daughter, struggling with her mother up a muddy slope, dodging thugs and wild beasts in the Darien Gap on their way through a thousand dangers and nightmares to a hostile closed border. I’m imagining a little boy who could be my son, clinging to a flimsy raft, lost on the high seas between North Africa and Europe. Once you get an image like that in your mind, it stays like a thorn in your flesh. Don’t imagine that we live in a world apart from the enemies of life. Not looking won’t vouchsafe our innocence or our safety.
Part sixteen: A Conversation and an Exhausting Walk to the Montmartre Cemetery and Back; Thoughts about Compassion – May 21, 2023
On Wednesday, Pancake is still in Luxembourg. Serge and Pierrette come for lunch bringing everything with them. I am impressed and pleased by the simplicity of their typical meal, an unvarnished puréed cod dish, baguette, cheese eaten with bread and with simple leaves of lettuce unsalted and fresh strawberries unsweetened. We talk for quite a while in French. I ask about Serge’s family and about Pierrette’s philosophy and experience teaching. I ask them about French schools and am disappointed when they reply that they are abîmé. I was hoping to hang on to my admiration. After our long lunch conversation, we decide to go for a walk to the nearby Montmartre cemetery where many of the cultural greats are buried. It’s far for me, but I want to do it. When we make it back to the front door of the house, I collapse upon entering the hallway. Serge pulls me up but I sink again on the stairway and have to climb backwards on my rear. At the top, I still can’t stand and have to enter the apartment on my knees. I make a joke about imitating the pilgrims of Sacré Coeur and I assure Serge and Pierrette that I’m in no pain and that the walk did me good. Which is true. I slept well after the exercise.
Before I go to sleep, Pancake arrives back from Luxembourg and tells me about his thesis defense. It went well enough, though his thesis supervisor wrote a cutting remark that ruined his satisfaction, but added no criticism or information. As always, we talk about the failures of the Left and what it might take for a real socialist opposition. I’m in favor of abolishing all taboos and defying cancel culture which I believe exists, though Pancake thinks it’s exaggerated. I’m convinced that any organization that calls itself socialist should proclaim and actively pursue goals of deprivatizing the financial sector, insurance companies, medical care, Silicon Valley, including the social media, and the pharmaceutical industry. The argument in favor of these deprivatizations is practical. Banks that are “too big to fail” and thus need bailouts can’t be left in private hands. Pharmaceutical research and the internet are founded upon social achievements that justify and call for public control. The same rationale can be applied to all industry, but the insurance companies are the most egregious example of a sector that absorbs vast resources without any value added. The idea that their competition lowers costs or stimulates progress is absurd. Socialism has to provide meaningful employment for all. Collaborative work is what stitches the social fabric together. Most people want to work for that reason. Not all of this was said in our most recent conversation: we’ve been having these conversations for a long time.
So what is to be done?
Before the advent of socialism, the collective work of the socialist lies in advancing the cause. All this should override the “grievance particularism” of what passes for today’s left opposition, which is little more than jockeying for every group’s fair share of what I call the shit pie. It’s that and our triumphalist war on words. Recently, I argued with respect to my experience of 1968 that, before the social media, crowds were mobilized and people politicized by the simultaneous or near simultaneous reception of news, speeches, or mass appeals. This is attested to by reports and photos of speakers addressing avid crowds. It’s hard to imagine the history of the oppositional Left without such scenes. It’s hard to imagine such events happening today. Why not? Because of the massive atomizing effect of the social media which generate endless quarrels and cancellations among the leftists themselves, but rarely contribute to a movement. The George Floyd protests were a possible exception. Could the Pinkertons and Cossacks have done more to derail and splinter the opposition than Twitter today? No one on the Left loved Cossacks or police agents, but few leftists are willing to give up Twitter’s ersatz politics. Few are ready to forego Twitter. The twenty-first-century phenomenon of news and commentary as humor draws upon and feeds into the Twitterization of political life by reducing it to memes and clever sound bites, to a surrogate struggle and opposition. As far as I can tell, Twitter doesn’t even contribute much to serious debate or persuasion. I will admit that my knowledge is second-hand and limited.
Pancake and I argue further on the subject. He reminds me of an open letter he and I wrote criticizing the Attention Deficit Disorder of a DSA that always jumps to the “next big thing,” forgetting about its previous priorities, such as the Medicare4All campaign. Upon reflection, I agree that steadfast goals are needed, but I argue that DSA should always admit and highlight authentically socialist objectives.
One thing is certain: the conditions and tenor of opposition do change. Between my stay in Hamburg in 1968 and West Berlin in 1972-73, the German left was transformed. The former time was the rapidly spreading antiauthoritarian phase in which minds were changing and masses mobilizing. The latter in the 1970s was partisanly organized and doctrinaire in Germany, and specific (feminist, gay, etc.) and reformist in the US. Anyone who doubts the rapidity of change in revolutionary movements should compare 1788 to 1792 or 1847 to 1851, periods of comparable duration but worlds apart. Moreover, it cannot be the case that political evolution is invariably negative. The status quo is far too wretched, the gap between productivity and distribution, material wealth and cultural poverty too great and fast growing, the ecological threat too grim. Socialists should spotlight the untenability of the status quo.
Part seventeen: What is the Role of Compassion in Oppositional Politics? – May 21, 2023
There are rules of courtesy that have nothing to do with the use of tableware: anyone who happens to hold a position of dominance (for whatever reason) should see to it that the (for whatever reason) disadvantaged get their turn. Do that, and do it even for the homely self-conscious kid on the sidelines. Show the overweight awkward passenger the same courtesy you would afford to Madame La Bourgeoise. Simply by putting yourself in the shoes of the other, you will gain respect from those around you. I’m sorry to say that it’s only since I’m an old man that I’ve spontaneously helped other, less capable, old people. When I was younger, they were too remote. Would they be offended by a form of condescension? I couldn’t put myself in their shoes and just hurried on if they didn’t signal their neediness.
This brings me to a subject I announced but failed to develop in my last blog: the role of compassion in politics. I’ve devoted some thought to this in writing about the philosopher Arthur Schopenhauer who believed that compassion is the only source of ethical behavior; and that compassion verges on a mystical awareness that you and the wretched beggar; you and the wounded animal; you and all living beings are essentially one, the embodiments of a single force of life. I won’t attempt here to recapitulate the cogent and fascinating metaphysics that justifies his view. He proposes an amusing hypothetical paradigm: Imagine two men, both madly in love with a woman, both losing out to a rival, both contemplating murdering the rival, yet both dissuaded by some principle of constraint. Let’s say the first guy is a Kantian who says to himself, “I couldn’t mandate that my action of murder should be elevated to a universal principle of action,” or let’s say that he’s religious (“I remembered the Ten Commandments: Thou shalt not kill”); or let’s say he was motivated by whatever impersonal code of conduct. And let’s say that the second guy just thinks, “I looked at him and just couldn’t stand to make him suffer! He’s after all no different from me.” Now Schopenhauer asks us: Which of the two is more moral in his outlook? Schopenhauer expects us to decide against the cold-hearted Kantian pedant and against the rigid Bible thumper and in favor of the man of compassion. Those former codes of conduct stood in an arbitrary relation to one’s actions. Fellow feeling, however, is in essence always the same. It can be contextualized in various ways, ranging from worker solidarity and soldiers’ comradeship to church fellowship and Christian agape, but all these contexts have a more identifiable core; they have more in common than the Kantian ethnic shares with, say, party solidarity.
I would tend to agree with Schopenhauer. There are evidently people with a congenital inability to recognize or empathize with the suffering of others who are capable of becoming ice-cold murderers. Yet there is a limit to the moral sway of compassion. It requires psychological proximity to its object. Don’t ask me to feel anything for primordial humanoids who lived millennia in the past. Don’t expect me to empathize with beings who appear utterly remote. Conversely, the person I see and hear and know has a strong purchase on my compassion. The weakness of a compassion-based morality is that it is often most intense for those closest to us but weak for those of another tribe, nation, or species. This is well known. On the other hand, abstract or universal codes of conduct only have purchase on my sensitivity and behavior if I have some inclination to embrace them. The individual who is incapable of grasping Kant and does not take the Decalogue seriously may still empathize with human suffering. I think that both principles have to play their roles. Denouncing either as “liberal” is incredibly shallow.
Compassion as the source of principled behavior is vital now because there are few other arguments against xenophobia. The masses who seek to cross our borders to escape starvation and violence have no rights other than those granted to them by the rich countries and lawful property owners who turn them away. Rightly or not, refugees are de facto and de jure subject to the laws and political will of nation states. It’s not likely that the national borders that sustain property rights will be abolished any time soon. But for the above mentioned reasons, compassion is hardly an adequate response to mass migrations of people. It’s necessary to consider the deeper causes and extended consequences of the global changes. People have to realize that the consequences are inescapable for us all. The answer might be that we will have to feel compassion for ourselves.
Greg Afinogenov’s review of Christopher Ely’s Russian Populism and Kropotkin’s Mutual Aid offers a fine brief account of the radical Russian intelligentsia and its alienation from the common people for which it struggled and fought actively, intellectually, and organizationally. From my pre-college youth to my recent travel across the Russian Federation and in my native Southern Illinois, I have always seen the Russian radicals as counterparts of my generation. We were equally engaged for and at the same time alienated from the people. I became interested in Kropotkin after reading an article about disaster studies that referred me to his Mutual Aid and to Solnit’s argument that the coming ecological disasters might revive the altruistic and cooperative popular reactions to earlier disasters. It’s possible but it’s like betting on our future blindness giving us a keener sense of hearing. Suffering can lead to compassion and cooperation, but perhaps too little, too late, or not at all.
Part eighteen: My condition is Worsening; the Home stretch – May 26, 2023
Recently I could tell that my condition was getting worse. It was harder to maintain my balance, harder to get up the stairs, harder to go to sleep at night. However, my part of our project is as good as done, and Didier had only ten pages to go. In five days, I’ll be in the hands of Air France and then in those of my daughter and wife and then home. Before I leave, I will see Kathrin from Heidelberg, Matti and Lucy, Jean-Marc Mandosio, and Pierrette and Serge. I plan to invite all my friends to lunch on Friday. As usual, I don’t want any drama. I want everyone to have fun to remember the day by.
Writing an ALS Diary seemed like a good idea at first. Formulating our experience gives us a sense of control over it. Unfortunately, writing about ALS means thinking about it more than necessary. I’m having difficulty finding the right tone as well. I’m not witty enough to make good jokes about death. Nor do I want to force my conversation partners or readers to perform their regrets. In order to give satisfaction to my sense of finality—without making my fate more important than it is—I find myself concentrating on the fate of the planet and of humankind. I wish from the bottom of my heart that I had made my opposition to falsehood and greed the prime concern of my life. If I couldn’t make the good cause my first concern, I would like to make it my last, futility notwithstanding. I prefer to think about the state of the world instead of pondering my condition.
Then there is Pierrette. She is astonishing. She and my wife have such fertile imaginations, can be so full of love and kindness. Pierrette can talk about French politics more sensibly than almost anyone I know, but her real gifts are her singing, writing, and acting talents. In photographs, she shows her age, but, experienced live, she is so completely alive that the years disappear. Her eyes flash, she gestures dramatically, her voice is that of a singer and actress. She falls into roles and breaks into song. She embodies for me provincial French womanhood at its liveliest and most charming, more natural than the Parisians I’ve met, more open in her enjoyment of her simple way of living than we in America. She is for me what my wife is for the Austrians. An amateur is a person who acts, sings, and writes out of love. They are both impassioned amateurs. My impression is that the clichés we summon in thinking about the sexually free-wheeling French don’t apply to Pierrette. She married young and has been faithful to her loved ones for all the years of her marriage. I believe her when she tells me there were no mid-life crises for the Azais-Blanc.
After Pierrette left, I found a message from my wife asking if I was flying home this Saturday and telling me that Hannah, who had promised to pick me up, would be in Texas visiting a friend. As it turns out, Veronika will pick me up. I’m looking forward to that no less.
Part nineteen: Wrapping it up; Last Thoughts in Paris – May 26, 2023
I began writing the last blog entry the day before yesterday, continued writing the rest of it yesterday, had visitors all day today (delightful but exhausting) and will be packing and saying goodbye tomorrow at lunch, and then on my way home the day after tomorrow. When nothing happens, I don’t know what to write. When a lot happens I don’t have time to write. Should I write that I often now, between other activities, think about the end of my life? I’m surprisingly calm about that. Perhaps it will be painful. Would it be any less so, if I obsessed about it? Everything in its time, and this is evidently mine. We’ve trained ourselves to imagine every change of life as something we accomplish. Dying is not an achievement (except in the sense that I can spare myself and my family further ordeals). I will want and need the support of my family and friends. If anything, death should seal our equality with all life. It’s a way of being one with all living (and therefore dying) creatures. To regard dying at my age as a singular injustice is to extract oneself from the community of life, a kind of inner death, une mort dans l’âme.
Today, Friday, I woke up too early but then went back to sleep and dreamed that my wife was once again baby-sitting small children who unsurprisingly had not grown any bigger in the meantime. Here was tiny Lukas, cute as an Hispanic teddy bear and laughing at her antics. But what was this? He was signaling that he needed my attention just as much. After cleaning up a mess I had made on the floor, I picked him up in my arms and felt his loving embrace. He hadn’t forgotten me or stopped loving me.
Part twenty: Waiting for my Flight at CDG, in Flight, Home, and why this ALS Diary was so Problematic – May 29, 2023
Now, after the warmest and most helpful send off I could have asked for, I’m waiting for an hour at my CDG departure gate. The sky was a perfect blue on the way here and the air had a pleasantly cool freshness. I’m noticing my compulsion (which is a characteristic tendency of literature professors) to turn even the most ordinary and banal setting and occurrence into a bearer of symbolic meanings. I can imagine what Jean Cocteau might have made of it here, more than Jacques Tati could manage, more than Hollywood could even dream of. Symbolism and Surrealism opened up our sensitivities. An airport waiting corridor is a classic liminal space, a dreamy Bardo or a low-key Purgatory. Aha! I have boarded the plane. I’ll stop using my phone so I’ll have power when I need it upon arrival.
Arriving early at O’Hare, I get the assistance I need. The young woman who pushes my wheelchair is interested in languages. A native speaker of Arabic, she knows French and Spanish but apologizes for her English accent. After some confusion, I find Veronika and we are soon on our way out of the Chicago area. I’m hungry and thirsty, but finding a place to stop doesn’t work out. I’m pleased that the tone in which I’m received is friendly, but I’m disappointed that no one asks or wants to hear about my experiences in Paris. At 8, I go to bed and sleep 8 hours.
In the morning, I have coffee and read some of the old NY Times that have accumulated. I’m interested in the feature on therapy from last week’s Sunday NYT Magazine. This or that detail is interesting, but so far it hasn’t touched on what interests me most: the context and effect of commodifying human dialogue and our search for personal truth. The good effect of interacting with my wise and caring friends in Paris cannot be commodified, but that healing effect is what should be compared with the paid and commodified equivalent called therapy. My uncommodified human interactions were possible because I shared in causes common to myself and my friends. Those ends were larger than our purely personal issues. I’m sure that the same distinction applies to everyone or at least could apply. Aren’t there causes and issues that we all share in common?
Commodification is always directed toward the individual consumer. If we were directed toward the common good, the focus of value would veer toward socialism, or at least away from the atomized me-first society that’s at the root of so much of our suffering. Therapy in general assumes that the problems of commodification can be resolved within the realm of commodification. Why do we expect this to work? Because therapy, like every true commodity, costs money and is purchased by me, the individual consumer. Therapy knows who I am: a paying customer and a commodity in need of adjustment all in one. Criticizing therapy is as outrageous as expressing anticlerical sentiment in the olden days.
I’m coming to the conclusion that the idea of keeping this ALS Diary was much more problematic than I realized. If I’m honest, it’s a perpetual downer for me and any possible reader. What was I thinking? That there would be some luminous revelation in the face of death? In reality, you only think deeper by thinking harder and divesting yourself of the delusions of your unique ego, which may be fed by the self-importance of the journal intime mode.
These diary entries are really only for me. In the future, they should all go on the personal page section, not to the Socialist Blog. I don’t want to withhold my notes on the ALS process and the thoughts that accompany it, but I also don’t want to shove it in people’s faces.
Part twenty-one: At home again. I’ve lost ground – June 1, 2023
Yes, I have lost ground. I knew that I was losing ground in Paris and I expected to lose ground even before I left for Paris. I expected it to be worse in fact. Nonetheless, while in Paris I blamed my losses on the sloping uneven streets and on missing my exercise routine at the Y. I consoled myself that, seated before guests in my apartment, I was as good as ever. I could sit and chat for hours. I could navigate around my narrow kitchenette to make tea or open wine for my guests. Pas de problème.
Now, back at home, the contrast is stark. It’s all I can do to lurch between one external support, one wall or piece of furniture, to another. Since my calf muscles are almost inoperative, I list backwards. Like a bicycle, I stay upright better with a forward motion. But the bicycle of my body is disjointed. I lurch forward and slam my numb feet down one after another. Yesterday in the night, I managed to get out of bed to cross the hall to the bathroom. But in the morning, after what seemed like a restful sleep, I didn’t have the strength to hoist myself out of bed. When I finally managed, I lost control of my bladder on the way to the toilet and had to change my underwear and pants. I’ve never done that before. It was disquieting. My wife is showing great foresight and kindness. I’m very concerned that I not impose on her more than necessary. She needs her routine and her diversion.
Should I even write the following? I’ve known for a long time that my wife is becoming more stylish and more beautiful than ever before. Just now she was down wiping the dining room floor on all fours. She wore white panties under her loose night gown, and with her backside toward me I was reminded that she is one of the rare woman who almost get sexier with age. I’m in no condition to perform as a husband. I’m only grateful that she chose me and that we were happy in every way for so many years. I now realize an added benefit if I die sooner rather than later. She is eighteen years younger than me. It will be easier for her to find a younger man who can give her beauty its due. Is it perverse or degrading that I’m not bothered by jealousy. Why should I be? It’s in today’s generation of insecure, entitled males that masculinity is so easily threatened that they invented the bizarre and hideous term “cuck.” It betrays their own deep insecurities, like the “incels” who proudly advertise their entitled self-pity, repulsive to women and men alike.
I suspect that my weakness in my first week after Paris was due to a cold. It was easier this morning to get out of bed. I plan to go to the Y soon.
Part twenty-two: Kick-Starting my Social Life Back in the USA – June 5, 2023
For most of the week after flying back home, I’ve felt achy and weak. Naturally, I saw this as a portent of pain to come. And maybe it is. But at the moment, I rather think that it’s being under the weather. I’m hoping that tomorrow things will brighten up. Tomorrow I’ll meet Jim and Nancy for dinner.
It was good to have dinner with Jim and Nancy. They are good-hearted and sensible as always. They could call themselves Socialists, Social Democrats, or Christian Socialists. Historical socialism would have embraced them and been embraced by them. I suspect that there are many about whom this can be said. However, the reigning spirit on the Left is identitarian. It discourages those who might be ready to join on principle but don’t feel comfortable with an ideology of special differences. Identitarianism fits into the advanced capitalist system as one more articulation of our specialism. Everyone has to have a special subgroup, an identity, a way of “branding” themselves. To disrespect a group’s identify is tantamount to genocide. The term “dead-naming” says it all. The socialism of DSA is a malleable adornment, put on to give specialism a jaunty radical air. “Socialism” is a chic feather in the identity cap.
We also talked about the destructive net effect on our healthcare system incurred by our prioritization of keeping the individual alive at all costs. I know that massive statistics support me on this, but I gave as an example of this spirit the tone of the (otherwise quite laudable) ALS Association: Every story has to be a narrative of successes, of marching from victory to victory. Every mailing contains the sign off, “No White Flags!” Well, speak for yourselves, comrades in suffering! I know when and how to hoist my white flag. I’m not going to march under your banner of “Me at All Costs.” I know and you know that we—let me say it bluntly!—are losers. There are many invisible strata of losers in our society. I’d rather claim my place among them. And yes, they include those bewildered by or taunted for their gender identification. I’m with them the way an atheist can stand with persecuted Catholics and Jews without endorsing their theologies.
Just as Jim and I were discussing our old colleagues and Nancy was in the women’s room, I sensed a tall female presence to my left. I turned and tried to respond to a warm and surprised greeting. But who was this statuesque blond-haired woman with Oriental features? Her Russian “privet” gave her away: it was Lyudmila, my erstwhile Russian tutor from back before I traveled five years ago across the Russian Federation from Kaliningrad to Kamchatka. Lyudmila is a Siberian. Her mother is a Buryat, her father an Evenk, both professional dancers. I’m not familiar with the Evenks; but I have met and spoken with a fair number of Buryats including Lyudmila’s dydya or uncle in St. Petersburg. They are Russified Mongols and, in my experience, a very handsome and outgoing people. I didn’t recognize her because she has dyed her hair blond. It has a good effect. I noticed her high cheekbones and was flattered by the sincere affection in her voice. As usual when we meet, we made vague pledges to get in touch sometime.
But then on the way home, I had a brilliant idea. Laura, another of my Russian teachers, was planning to drive over from Urbana for a visit on Sunday. Both have an interest in meeting other Russian speakers. I would invite both and make a small soirée of it. Lyudmila has many contacts in the Slavic immigrant community. She has a teen-aged daughter whom I have met. Perhaps they could help me find the part-time help I will soon need.
Normal Thoughts 