Tag Archives: ALS Diary

Now it’s becoming clear to me that my friends and acquaintances can be divided into two distinct groups. There are those who are on familiar terms with death. They talk about my condition with matter-of-fact sympathy but without much ceremony. And there are those who shy away from me because the looming Grim Reaper makesContinue reading “ALS Diary (part thirty-six): The Invisible Brother- and Sisterhood of the Initiates of Death”

On Saturday I had lunch with a friend named Tony (she is close to Jim and Nancy) and with another lady my age or a little younger from the same circle. The Indian buffet is a place that I once loved to patronize on Saturdays midday. Now the spices have gotten too potent for myContinue reading “ALS Diary (part thirty-five): A Secret Brotherhood”

Last night, I happened to read a promising, but in the end rather disappointing, New Yorker article on “transference in the classroom” (essentially this is about the student or teacher seeking from the other the love or approval missing in family or conjugal relationships). The effect of stale Freudian concepts addressed to current pedagogical issuesContinue reading “ALS Diary (part thirty-four): The Palliative Power of Love”

So far, I haven’t signed up for an ALS support group or tried to persuade anyone in my family to go to one, but my friend Laura has been spending time with her father who is about my age and has terminal leukemia. It helps to hear from her about getting along with her fatherContinue reading “ALS Diary (part thirty-three): Comparative Notes on the Terminally Ill and their Families”

Recently, I read an article about Constance Garnett, the prodigious turn-of-the-century British translator of the great 19th-century Russian authors. I remember her steady English voice so clearly. It accompanied my adolescent and young adult reading. It resounded in contrast to the extremes of the translated Russians. It was like hearing a staid clinician recount theContinue reading “ALS Diary (part thirty-two): Countercultural Continuity”

Following the downward progression of an ALS patient is truly about as exciting as watching paint dry. Yesterday, I had a conversation related to relationships within my family that for once I am going to withhold. Actually, it’s wrong to say “for once.” I’ve always held back and also often intimated family problems. Still, theContinue reading “ALS Diary (part twenty-eight): the Body Declines, the Soul Hits Bottom, & Brother Lear”

Four years ago, I decided to spend time in the poor southern region of Illinois (“Little Egypt”) where I am from. It was a bit like exploring the ruins of an abandoned civilization. I saw small towns that had once been rich from mining or river commerce. Once sizable towns had been reduced to modest,Continue reading “ALS Diary (part twenty-seven): Reflections of Where I come from, Rachel Cochran’s ‘The Gulf’”

From a New Yorker article about terminal ALS patient advocates demanding drugs that the FDA has not yet adequately tested, and the hatred faced by critics and dissenting ALS patients: The skeptical [ALS] patient told me that he thinks about this all the time. “There are maybe twenty-five thousand of us now,” he said. “ButContinue reading “ALS Diary (part twenty-six): Living Badly, Dying Badly”

I’m behind in my planning. I can see the phase fast approaching when I will no longer be able to make it to the bathroom or use the toilet on my own. In my vague expectations, I had imagined that I would first reach the phase where I could no longer swallow or breathe unaided.Continue reading “ALS Diary (part twenty-five): Father’s Day”

Any reader of this blog must get tired of reading the same report of my worsening condition. I can understand that. My balance has gotten worse since I am home. My hands and forearms are subject to unpleasant cramps. My lap swimming has come up against my shrinking endurance. By the end of the secondContinue reading “ALS Diary (part twenty-four): Settling Into a Routine”