Author Archives: pfannkuchea

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”

I regret the depressing inexorability of a diary in blog entries documenting the progress of an incurable disease. I have thought seriously about shutting it down and having it deleted, or at least relegating it to an even more private space. That was difficult for technical reasons. But now I feel that though I amContinue reading “ALS Diary (part twenty-three): A Favorable Turn of Events”