So I guess today is an anniversary of sorts for me.
13 years ago I had a stroke.
I saw old posts from people on facebook, I never saw the posts before.
It’s nice to know a few people cared. I’m guessing more people cared than I realized.
I had a pretty massive stroke 13 years ago. It was the kind of stroke that kills 99% of the people who have a similar stroke in the first 90 days. I’m going on 14 years now, just past the 13 year mark. So for better or worse I’m still moving around.
That said my diagnosis is/was “Locked-in-syndrome”. Most people with the same diagnosis as me are only able to move their eyes and blink. I have a lot more ability than that. I use an electric wheelchair, but I can do things that most people with my diagnosis could never do.
I lived for months in the hospital and I couldn’t move myself, I had to have my diaper changed and I had a catheter. Not my idea of a good time. I had no idea what had happened. I thought some kind of technology had been invented to keep me in my bed. Everyone thought I would never move again by myself. I still remember the day I was able to move my fingers by myself. I wanted to show the physical therapist and occupational therapist. At the same time. So I went to my appointment and after they put me back in my chair before leaving, I moved a couple fingers on a hand. The one lady’s eyes got really big. I don’t remember much more than that at the moment.
Over the next few months I was able to begin doing lots of things on my own. Using the bathroom, using my wheelchair by myself, using a walker, feeding myself.
One thing that I didn’t really understand is how much effort is required to chew your own food. Mechanically processed is much easier. And tastes the same.
Eventually a Doctor at the VA hospital felt I needed to go somewhere else. They called it a “skilled nursing facility”, most everyone called it a nursing home.
In some ways I hated that place. One of many reasons, it smelled like crap. Literally. They would change the diapers of other people “warehoused” there and the stink was awful. But one thing I did learn how to do myself there was get on and off the toilet by myself. And that was not something they spent time teaching me. I figured it out by myself. My wife at the time said it was the best place that was recommended.
Eventually I was recruited to go to another facility. Awesome. I got a private room and bathroom. They helped me take a bath everyday. And I was there until I said I would not go to any other facility. They asked me what should they do with me. My wife at the time didn’t want me at the house. But she sent me divorce papers while I was there. So I said put me on the street. I think that might have shamed people into working with me.
So in a small nutshell that is my life for the first year after my stroke. What a rollercoaster.
It’s been quite a ride since then.
