Tony Judt lets us into the struggles of his daily routine. His summary of his condition:
In effect, ALS constitutes progressive imprisonment without parole. First you lose the use of a digit or two; then a limb; then and almost inevitably, all four. The muscles of the torso decline into near torpor, a practical problem from the digestive point of view but also life-threatening, in that breathing becomes at first difficult and eventually impossible without external assistance in the form of a tube-and-pump apparatus. In the more extreme variants of the disease, associated with dysfunction of the upper motor neurons (the rest of the body is driven by the so-called lower motor neurons), swallowing, speaking, and even controlling the jaw and head become impossible. I do not (yet) suffer from this aspect of the disease, or else I could not dictate this text.
By my present stage of decline, I am thus effectively quadriplegic. With extraordinary effort I can move my right hand a little and can adduct my left arm some six inches across my chest. My legs, although they will lock when upright long enough to allow a nurse to transfer me from one chair to another, cannot bear my weight and only one of them has any autonomous movement left in it. Thus when legs or arms are set in a given position, there they remain until someone moves them for me. The same is true of my torso, with the result that backache from inertia and pressure is a chronic irritation. Having no use of my arms, I cannot scratch an itch, adjust my spectacles, remove food particles from my teeth, or anything else that—as a moment’s reflection will confirm—we all do dozens of times a day. To say the least, I am utterly and completely dependent upon the kindness of strangers (and anyone else).
Read the whole essay. It is, in turns, beautiful, heart-wrenching, frustrating, alienating, incomprehensible, and inspiring. Stories like Judt’s, more than anything, are why I study and believe many of the tenets of transhumanism. Wellness – vibrant, youthful, dynamic, perpetual – is the goal, enhancement is secondary.
[H/T Tyler Cowen]
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No one endorses the ideas or concepts explored here, not even me.
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