Post by marti on Jan 19, 2018 9:49:10 GMT -8
...In high school since my return, and I assume in college, it seems a matter of knowing how much to 'roll back' my old personally, which was one of exuberance and excellence. A matter of degree. How much? Maybe others who have gone before can help.
For example, I have always been an athletic and academic very high achiever. Advanced placement and such. The athletic part is history, but the academic and social aspects, or more accurately at this point, inclinations, remain.
I am in an advanced literature class. One recent assignment was to memorize and recite, with appropriate feeling, a long poem. Characteristically, I picked a hard one. (Poe's The Bells).
The method was to go up to the front of the room and recite.
My turn came and the teacher said, "Marti, you can stay where you are."
I didn't think much, and semi-automatically said that I'd go to the front like everyone else.
In reflection, I now realize that I was being self-centered. I assumed the teacher was trying to save me hassle. But now I think the teacher may have also trying to save the class from the spectacle that followed.
I wheeled up. Each eye on me. Then turned around, locked the wheels, and began.
My spasms began, too. Spasms seem to be a part of this experience, and mine seem uncontrollable by medication; violent, totally unpredictable, and disturbing to others more than me. Usually in class they are hidden under the desk. And I am in back of the room.
So here I am trying to be serious and my right legs starts pumping up and down. Not a little shake, but UP and DOWN.
The other leg contorts into a grotesque position.
I try, for the thousandth time, to hold the leg still but, for the thousandth time, this doesn't work.
I finished the recitation and wheeled back, but I could tell that my classmates were profoundly affected.
I've explained the spasms, of course, but it seems that just the idea of out-of-control numb legs moving at random on their own is unnerving.
So what's the lesson here?
Should I have stayed in the back of the room rather than display my ruined body so prominently? Should I not have tried to participate at all,? or done so privately.?
I was acting AS IF I were not disabled and disfigured, rather than accepting it.
The coming of spring presents many more situations. Social courtesy and the ADA guarantee that I cannot be excluded but what is the wisdom of, for instance, going to a prom and sitting in a wheelchair against a wall, legs spasming, as others dance?
What good is that? Being a pity date?
This weekend is the annual ice skating party. Last year, I was in the hospital, the year before, I was a popular star skater. I've been invited by friends.
Until the recitation debacle, I was going to go. But now, question how appropriate it is and if I can withstand the pain. The pain is remarkable. If it were just a sprain it would be different, but this is forever. And ever. And ever. I am finding it very hard to get used to that thought.