Jul 19, 2010

What is your cage doing to you?


The person who posted this to the Motor Neuron Disease boards followed the link with this quote:

"It doesn't only affect us."

I am generally a very "social model" of disability kind of person, but sometimes it fails us. It fails us when we can't do things a different way anymore, when we simply can't do them at all. What the poster was referring to ultimately is being "locked in”, the point that all connection to the outside world ends.

90% of locked in people experience brain death in short order. I am working with a man a little older than me at a local nursing home, and he has been in that state for 4 years. He isn't quite locked in by medical standards, but lack of any kind of occupational therapy has denied him the use of his remaining movement - some level of blinking and a right finger twitch, a small ability to move his head to the right. He is still in there, and I am in awe of his mental stamina. He makes his high effort, small head movement when a pretty lady walks by or one teases him that she has lost weight. He opens his eye widely when dad asks him if he wants to try our newest contraption. We are making progress, and we may have real yes\no\maybe communication this very week! It is a great mystery, what he wants, what he likes, what kind of person he has become. I look forward to really meeting him.

I know that having my communication limited has changed how I think, not just how I express my thought. I think of things to say that didn't come to mind before, things pre-structured to get a positive response with few words. Conversely, I have inner monologues that are new to my thought life, unfiltered for sharing with others. They are the thoughts of a solitary person, even though I live in a bustling house. That is what my cage is doing to me.


The Wheel Deal said...

Sharing those inner monologues can truly help others. I'm learning that lesson myself by writing my own blog. It's scary at first to put those deeply personal thoughts out there for the world to read, but I'm confident God gives us those thoughts to share. Thanks for sharing your thoughts Emily :)

Pink Doberman said...

While I am quite able bodied comparatively. I found your post to be quite interesting. I used to be extremely verbal. Always on the phone always talking to people etc. I now, still enjoy talking but it has become harder to process my thoughts out of my mouth. I find they flow much easier through my finger tips.

It isn't that I have difficulty with speech, I just have no one to speak with any more as I am by myself most of the time.

Your post has helped me make sense of this. I think I need to focus on some more verbal conversations so I don't "loose" my abilities.

Thanks so much for sharing!!! You are so right! Everything about a person needs to be worked on to keep yourself in the best shape you can be in.