Tom Swift is a minister here in Asheville who contacted ALS when he was in his early 50’s. He now lives in a nursing home because his condition deteriorated to the point that he needed more help. It really is a horrible disease. It has affected his body so he can no longer speak or use his muscles. He writes a column for our local paper about living with ALS. I visited him several times a few years ago and he is an amazing man. Although our situations are very different and he is going to die from his disease, I learned much about how to survive as traumatic brain injury survivor from him.
I invite you to read his latest column: http://www.citizen-times.com/article/20110703/OPINION04/307030011/If-you-don-t-mind-think-ll-go-crazy-now?odyssey=modnewswelltextOpinions. It was published this past Sunday and I really could relate to it. He describes an incident when he was trying to communicate to several heath care professionals that he needed his BiPaP mask, which he wears at night to help him breath, adjusted. They kept asking him questions but they were misunderstanding his nodding motions. It really was quite comical and I hope you’ll read his article.
It got me thinking about how traumatic brain injury survivors are often misunderstood. I think I was more senstive to it in the very beginning and I often took it personaly and got angry inside. Now I’m used to it and I just accept it as a fact of life. This is one reason it is so important to talk with other survivors because they really understand all the challenges.
Just this past week I had an experience that happens all the time. You would think I would be used to it by now but this type of experience always make me angry although not like it used to. Now it’s mostly just an annoynance. I had a meeting that I’ve had for about a year in the same place. I lost my directions and I swallowed my pride and called a couple folks for directions. Even with the directions I still missed the right street and had to turn around and come back! When I got to the meeting, I had to remind myself that no one knew that I got confused on route and I tried to simply forget about it and concentrate on the meeting.
What sort of challenges do you have and do they make you angry? Did your injury happen in the past few years or are you like me, a more long term survivor? See the above right for commenting instruction or contact me directly at firstname.lastname@example.org