It has been awhile since I’ve written about anything in my recent life experiences. First off, if you are reading this thank you . It is just a culmination of my experiences in the world since I received my terminal diagnosis. I recently lost my arm and hand movements, I’ve earned the title quadriplegic.
I have been dreading this moment since my initial diagnosis. Told myself I would not want to live like that. Can you imagine, paralyzed and unable to talk, hell no I’m not going through that shit. This was the polarizing moment where I had to make a decision. And I didn’t make a decision, but I pointed mentally towards i will just let the disease take its course.
As time went on I began getting my affairs in order and working a lot to keep my mind busy. I saw the movies Gleason and Augie, and I saw that it was not all doom and gloom, these guys are living. I said to myself I can do that, but then I learned that insurance doesn’t cover caregiving and I would be paying six figures a year to have the required care. Holy shit, just another huge burden.
Today I am living with ALS. Yeah it’s fucking hard, I have some horrible experiences that pushed me to the edge. But here I am, and I am happy with my life.