Tag Archives: ALS Diary

After a lunch conversation with Terri in which, inevitably, the topics of illness, pain, and death came up, I read a thoughtful and moving New Yorker article by Peggy Orenstein in which she recollected her father’s old age dementia. The New York Times had an article recently about Dutch communities for elderly sufferers of dementia.Continue reading “ALS Diary (part forty-six): Why Does Letting Go Get Such a Bad Press?”

It’s absurd to talk about normalizing death since nothing could be more normal as it is. Nonetheless, we all naturally fear it. Aside from its horrific variants wrought by violence or disease, death means a foreclosure of all human possibility. No other living creature, we are told, knows that it will face this foreclosure. ItContinue reading “ALS Diary (part forty-five): Normalizing Death and Dying”

Nietzsche’s poetry, which we too often try to unlock with the code of his labyrinthine philosophy, is accessible to existential empathy. He was a loner whose body was signaling its imminent demise but whose spirit could still rouse itself to flights of incandescent illumination. I’ve known that condition since my student days. I know whatContinue reading “ALS Diary (part forty-four): Nietzsche and the Lyric Poetry of Death, “Die Sonne sinkt””

Several of Nietzsche’s most beautiful poems can be read as contemplations of death. As such they can be both unsettlingly strange and grotesquely funny (not unlike the Mexican artist Jose Posada’s crazy strutting and partying skeletons, though Nietzsche is deeper and more layered). For someone facing off with our cartoonish Grim Reaper, this sort ofContinue reading “ALS Diary (part forty-three): Nietzsche’s Cartoonish Contemplation of Death”

It’s been almost five months since I was diagnosed with ALS and more than a year and a half since I began noticing my symptoms. Two years ago, neither I nor anyone observing me noticed the plodding gait that I would soon exhibit. Since then my walking, my strength and balance, have gotten steadily worseContinue reading “ALS Diary (part forty-two): Looking Backward, Forward, and Summing Up; The Death of Ivan Ilych”

Frank Bascombe’s ALS-afflicted 47-year-old son Paul in Be Mine is not autistic, but in his relationship with his father he is tactlessly out of synch, tone-deaf, and entitled. His father rents a camper mid-winter and takes him, caviling and complaining, to see the World’s Only Corn Palace and the stone presidents of Mount Rushmore. UponContinue reading “ALS Diary (part forty-one): How the Novel Ends and What it Makes me Think About”

After finishing Fritz Zorn’s Mars, I’ve started another book in the same vein: Richard Ford’s Be Mine. It’s not cancer-themed like Mars, but specifically ALS-themed, narrated by a father whose 47-year-old son Paul is dying of a faster-acting variant of what I have. That’s what motivated me to mention it to my wife who boughtContinue reading “ALS Diary (part forty): More Literature of the Moribund – Bascombe, Zorn, Ivan Ilych, Everyman”

I’m grateful that my wife went with me to my neurological appointment in Peoria. I’m grateful that she not only took part in the conversation with Dr. Zallek but even stayed with me (I asked her if she preferred to go outside) when I brought up the matter of what I call my “exit strategy”.Continue reading “ALS Diary (part thirty-nine): Plain Words about an Exit Strategy”

It’s an old genre, the tale of the blasé protagonist who only faces ultimate reality in a confrontation with death. First of all, there are the many iterations of the late medieval, early modern Everyman-plays. Tolstoy’s The Death of Ivan Ilych shares the lightening simplicity of those dramatic treatments. But I want to consider aContinue reading “ALS Diary (part thirty-eight): Narratives of Death and Revelation”

Last night, I took part in a webinar on palliative medicine designed for ALS patients. I learned some things that my doctors hadn’t mentioned (such as that ALS can affect cognitive functions).  One possible ALS symptom has the effect that the patient cries when something is funny and laughs when something is sad. By theContinue reading “ALS Diary (part thirty-seven): An ALS Webinar on Palliative Medicine”