There are times during the early morning when I feel good. I get up, do some stretches and exercises, grab a can of cold juice, and bask in the cool morning air.
Thank you, Friedrich.
I feel good.
That’s when I am absolutely certain I can beat the end of December life expectancy from my neurologist’s ALS assessment score.
I feel good.
I want to go do something.
Then I move. It’s only a few dozen feet to get to the bathroom, bedroom, or home office and back to my leather throne in the living room. That movement is excruciatingly difficult and leaves me completely out of breath, gasping for air, and reaching for the ventilator mask.
That’s when I am absolutely certain I will not make it to the end of the week.
ALS sucks the life out of a body. It weakens muscles, stiffens muscles, makes muscles not work on command. That means simple physical tasks become difficult. I cannot pick up rice with chop sticks or shave with my right hand or floss my teeth or get out of bed without assistance.
Slowly but surely the rest of my body is following the route taken by my breathing. It is dying.
Today marks the beginning of the Second 100 Days; this time the goal is to make it to the end of December, not the first of December (the first 100 Days). If I can make it to January 2021 then I exceed all expectations.
Anything beyond that is living on borrowed time.