Write about your strongest memory of heart-pounding, belly-twisting nervousness: what caused the adrenaline? Was it justified? How did you respond?
This is what it feels like to stand along the edge of a cliff. That was the thought that ran through my head when a conference room full of adults with medical degrees turned to look at me, waiting for my answer. It has been decided after two weeks of evaluation that I was indeed a candidate for an experimental surgery which, if everything went well could make it possible for me to do things I wasn’t able to before. However the doctors couldn’t say exactly how much of a difference it would make other than saying that in their professional opinion the potential benefits outweighed the risks. Because it was surgery on the spinal cord itself there was the risk that I might end up worse off than I was now, though the doctors couldn’t define what “worse” might entail anymore than they could “better”. The surgery was never performed on anyone older than 14 so if it was going to be done and had to be this year. The doctors looked to my parents and my parents, reasoning that I would have to deal with the consequences good or bad, long after they were dead, looked at me.
I sat. I thought. I deliberately imagined the worst possible scenario I can think of, could I live without my voice and my hearing if things went badly? I imagined being trapped inside my own head and felt my gut twist into a Gordian Knot and my toes literally curl in my sneakers. I silently admitted to myself that if that were to happen I would probably see a mental health professional in order to cope, at least at first. refuse to even contemplate seriously any idea of what a best case scenario might be because even if the operation were successful chances are it would fall short of my hopes and I didn’t want to be disappointed. They were still looking at me. Nothing ventured nothing gained right? With a mental shout of “cannonball!” I jumped, and heard myself say “let’s do it.” The rest is history.
As I stated in the previous post I am disabled. I’m old enough and cognizant enough to be a fairly autonomous adult, at least that’s what I work on people acknowledging, it’s a difficult concept for some of my family to grasp though.Since I am older now and she has survived raising my mom has become something of an impromptu mentor for people with school-age disabled children. Recently she befriended a woman who has an elementary school age little girl with cerebral palsy which is significantly more severe than mine. I do not know how old she is chronologically yet because I haven’t met her but she has the approximate mental level of a five year old. The special education teachers at her school (a school which I too had the misfortune to attend) has made very few if any attempts to teach her to even recognize her alphabet, a task which her mother believes is well within her capabilities. It bothers me that somebody who is supposed to be an “educational professional” thinks that just because a child is nonverbal as this woman’s child is means that they are incapable of learning even the rudiments of communication. I had thought that the first thing they taught special education teachers in college was to leave preconceived ideas of how people learn at the door. If it isn’t it should be.
I am not sure why but I feel like I spend most of my life waiting for things to happen. I’m not talking about just the relatively large things then everybody waits for, like moving out, or getting a job. I have to wait for even the smallest things to be done. I can’t decide when I get up on a daily basis. Because I have cerebral palsy I have a personal care attendant that comes to the house during the week. This is not saying that the schedule is totally inflexible, it’s not, but it is nowhere near choosing to hit the snooze button and rolling over. I don’t think I would mind waiting for the bigger stuff in life if I didn’t have to wait for the tiny details as well. I fully expect that by the time everything is said and done I will have driven everyone I know thoroughly insane.If you know me I apologize in advance for myself. It you don’t, just this once be thankful realized that not everyone reads this blog knows much about me beyond what I choose to write here. I have recently discovered a nifty program that WordPress has begun supporting which looks up related pictures and articles based on the text of the entry. Therefore, for anybody interested, I leave you with an article on cerebral palsy found through Wikipedia. Just in case you’re wondering, the picture was captured with the search engine as well, it’s not anyone I know personally.