
As a person living with ALS there are days I simply don’t want to ALS. It’s silly I know, but let me explain.
I don’t want to sit in my wheelchair all day, I want to get up and walk. I don’t want my family to help me with every aspect of my new existence, I want to do it myself. I don’t feel like taking a slew of medications, that have minimal effect on my condition. I want to eat without fear of choking, or without chewing the inside of my cheeks.
Today I don’t feel like putting my catheter on, but I have to. You see, if I don’t I will simply piss myself, that would be inconsiderate to my family. I don’t want to but I will, for them and for my dignity.
Today I don’t want my muscles to twitch incessantly, or to yawn in a way that makes my whole body tense up. But it will happen allot. I also don’t want to nap because chewing is exhausting, yes chewing.
I just don’t want to ALS today. So I close my eyes and dream all the above. You have to understand this, only in our dreams do we not ALS.
So I close my eyes and dream…
Juan Reyes
TJO