ALS sucks

It’s ALS Awareness Month.

So here is some awareness.

Ben is 40 years old and he cannot walk, bathe, or dress himself. More often than not one of us has to feed him at night. He is losing his voice and one day it will be replaced with an electronic version of himself. Just in the past week, the doctors have ordered a voice computer for when he can’t talk, a lift for when he can’t stand, and a feeding tube for when he can’t eat. He’s fallen twice in the past week and had to get 12 stitches in his forehead thanks to his weakened muscles. 

I have had more conversations start with Bub saying “I remember Dad before” because, of the two of them, he has the harder time reconciling this version of his dad with the one from when he was little. And still LG will occasionally make a drawing or tell me a story of what it would be like if her dad wasn’t sick anymore. 

It’s hard 90% of the time, so much so that the 10% that seems okay feels like a lie. And it will continue to get worse until one day the worst thing will happen.

That is ALS. And ALS sucks.