I decided to cut back on and cap my diary entries. The increasingly political material will go on another site. On this one, I will report tangible changes in my condition. I realized that the compulsion to keep an ALS Diary was pushing me to overdramatize what is in fact a completely boring decline. True, it did give me a sense of control, but it distorted my day-to-day experience.
Some benchmarks have been met. In December, I received the motorized wheelchair. It was high time. So far, I have avoided having to use it, but this will come soon enough. The night before last for the first time, I was unable to mount the staircase to the top. Last night I succeeded, but only because I constantly shifted weight to my slightly stronger left leg. I slept well enough both nights. I went to the Y today. Routine gets me through my exertions. It’s really always the same thing: I’m worse but still somewhat mobile. I’m always trying to maintain my weight despite my loss of appetite.
The most remarkable thing about my condition is probably my equanimity. I am not suffering the kind of despair or anxiety that is supposed to accompany pending death. Perhaps this is good news for my fellow sufferers. At least for me, ALS is not particularly painful. I am not bitter or depressed. Sometimes I think that this is because I got that behind me with cancer a few years ago. In my youth, I spent a year and a half at the age of eighteen and nineteen in a condition of accute anxiety in fear of death. It was shortly after my beloved (and very religious) grandmother passed away and I was also under stress at the university and as a half-time student worker. I had a first panic attack around Christmas time. I had to be hospitalized. After that, I would lie awake at night focused on the blood flow through my heart and imagining that it could stop at any instant. When you’re concentrating on stressful efforts, it’s possible to obsess that involuntary functions also depend on an effort of will which could fail in any moment. In addition, I’m certain that I felt guilty and vulnerable for abandoning the faith my gentle and loving grandmother had instilled in me. I remember getting up after sleepless hours and pacing the streets of the university town. Somehow I got through the months of debilitating anxiety.
After a year and a half, I was visiting older friends in the French Quarter of New Orleans. It was Easter and I had spent the previous night bar hopping with David Wiley, an older aspiring writer and alcoholic who loved to talk about literature with me. We were on the back steps in the little courtyard of the apartment house when an old Italian immigrant woman returning happily from Easter mass directed a cheerful but incomprehensible speech our way. She probably reminded me of my beloved grandma; but in any event, her warmth and joy were so contagious that she brought tears to my eyes. I left the city in a new state of tranquility and I never experienced the anxiety of dying again, though throughout life I have thought often about death. In the moments before the administration of anesthesia for my surgeries, I always reflected that I might not wake up. What I saw each time was the incredible beauty of the nurse’s eyes, that is, of human eyes, of communing and exchanging meaningful glances with a fellow human being. Approaching the end, I have my model for approaching death: Socrates. I am grateful to my wife, to my friends, and to the daily or almost daily attention of Laura in Urbana, Pierrette in France, and Pancake wherever he happens to be.
If my previous ALS Diary entries overdramatized my situation, I suspect now that that, too, was a useful preparation, a ladder I had to climb before pushing it away.
Signed,
Andrew (Weeks)
Normal Thoughts 