ALS Diary (part twenty-four): Settling Into a Routine

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 second or third lap, I’m no longer able to propel myself forward in the water. Exhausted, I find myself treading water before I reach the end of the pool. At home, I can still heave myself upright, but maintaining myself has become extremely challenging. Even going from sofa to kitchen, I now prefer to use a walker. My voice and mind are not yet noticeably affected. Nothing could be worse for me than losing my mind.

Looking back over my previous entries, I recognize plenty of whistling in the dark. In the first entry, I congratulated myself on my fortitude which I equated with nonchalance. That’s not incorrect, but I suspect that it’s probably true for almost anyone. Even the most nervous sufferer would sooner or later surrender to what I call anxiety fatigue and transition into some state of nonchalance. Most of us can’t maintain a condition of tense anxiousness in perpetuity. The mind of even a condemned man presumably sooner or later wanders. My mind is wandering now. I’m hoping as always that a good night’s sleep might restore my strength—at least a little.

And it did. This morning I felt better without being stronger or more balanced. Lusya arrived with her daughter and I showed her how to make potato pancakes the way I like them. Half of the time we spoke Russian, her preference. Christina was charged with mopping the back patio. She was very shy and unsure of herself but they both did a good job. That’s a relief since I will soon be unable to cook for myself. By the end of the year, my arms and legs may well be incapacitated.

I’m much happier hiring someone I know and care for than accepting the mediation of a for-profit agency. Others instinctively prefer the latter. The same way many people think that if they purchase a bottle of water, drinking it is safer than anything out of a tap. Commodification extends some sort of inherent blessing or certification of approval in our minds. We grouse about capitalism, the way medieval peasants groused about the Church. In the end, we want its blessings.

Signed,

Andrew (Weeks)

Published by pfannkuchea

A graduate student at the University of Luxembourg, I study the French Third Republic and liberalism more generally.

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