Category Archives: ALS Diary

It’s a beautiful mild and sunny Saturday. Serge and Pierrette came for lunch, bringing an unlabeled bottle of red wine from her home in Gruissan. It had the taste of simple friendship and hospitality that I associate with Narbonne, which is next door to Gruissan. When I first found out where she is from IContinue reading “ALS Diary (part thirteen): A Splendid Day with Friends and Memories”

Now that I’ve realized that nothing is more important than not obsessing about my condition, and that one of the best palliative medications is memory, I’m indulging mine and finding that it’s more than ready to do its part. Pancake is a willing audience with his experiences that resonate with mine. This rainy Friday inContinue reading “ALS Diary (part twelve): Memory as an Escape back to Reality, Dammtor Station”

On Tuesday night, I went to sleep a little earlier and slept soundly throughout the night. To anyone with ALS or undergoing treatment for cancer like me seven years ago, I would strongly urge that they always aim for a good night’s sleep. It’s therapeutic, good for the mind and for the body. Loss ofContinue reading “ALS Diary (part eleven): An Intermittently Rainy Day in Paris & the Fisher King”

From Sunday to Monday, I slept better and then felt better getting up, but by 4 pm I am more or less exhausted. We’ve worked well today and I am confident I can finish the project I came here to do. After a modest dinner, Pancake and I walk to the Place des Abbesses, buyContinue reading “ALS Diary (part ten): My Second Week in Paris”

Again, I got up relatively early, before seven today, and the three of us, Urs, Didier, and I, worked through much of the day, pausing at one o’clock for a carry out lunch of bakery pizza. This has the advantage that it gives me a full-day of effective activity and hearty companionship with a minimumContinue reading “ALS Diary (part nine): Friday and Saturday in Paris”

It’s a crisp May morning two days after May Day. I slept well and we undertook a small expedition into the rue Caulaincourt for groceries and a sidewalk cafe. The Café qui parle wasn’t open yet, so I sat on a bus stop bench while Pancake took our shopping list to Franprix, and I watchedContinue reading “ALS Diary (part eight): An Early May Morning in Paris”

On Thursday morning, Didier met me at the airport and we got to work as soon as we arrived in the rue Tholozé (after we had eaten at a deli across from my apartment). We worked all afternoon. In the late afternoon, Pancake (Andrew (Pfannkuche)) arrived from Luxembourg. On Friday, we kept to the sameContinue reading “ALS Diary (part seven): Arriving in Paris and Acclimatization”

I forgot to post what I did and thought on the last weekend before leaving. First Felix came over for a long morning conversation about politics, the allure of Adorno, his Ph.D thesis, and his new gig at a Catholic Benedictine College near Naperville. At 1:00 pm I went to the conversational luncheon of theContinue reading “ALS Diary (part six): A Long Saturday and into Sunday Three Days Before Paris”

On my way to the Credit Union this morning I happened to hear something on my car radio that I found moving. During the Second World War, while the Wehrmacht was inflicting its frightful siege on Leningrad, Shostakovich composed his symphony in honor of the suffering city. When the symphony was finished, the defending SovietContinue reading “ALS Diary (part five): Thoughts on Remaining Human”

Zallek will be my last one, so it’s good that we got on well. He reserved two hours for me in order to gauge my reflexes and responsiveness. If he sees a fair number of ALS patients, I can imagine that he has to blunt the force of the diagnosis and perhaps struggle with disbeliefContinue reading “ALS Diary (part four): Another Day, Another Doctor”