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?
Signed,
Andrew (Weeks)
Normal Thoughts 