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.
For example:
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.
this, I getting back to who I was and NO ONE can stop me (the competitive, I have "some" control, athlete/scholar). I took advantage of my body and opportunities that most people did not -- I lived in every moment (something I knew was not going to last). As a PhD. after SCI, I managed but I had NO IDEA I would never not have pain, spasms, or no sleep). What I found most difficult, was trying to explain to people, I AM NO LONGER who I USED to be. I am in a lot ways, but, not the same. Why? Because everything was possible before and now that is no longer the case. I went to online boards and asked questions. One question I did a poll on, was "Could you explain SCI to your old self with the knowledge you now have?" Everyone said no. Which made me think, if we can't EVEN explain it to our old selves, how can we expect ANYONE who is not to really understand? The point is you can't. Can we move on (no pun) absolutely but NOW armed with NEW knowledge and limitations. If you look at this from game theory, different hand, how do play with this hand well? That is what you will learn -- and I recommend taking the first 3 years and not even think about it. Be kind to yourself. Mourn yourself. Mourn your friendships lost (because that is a reality). People like to be optimistic or cut off -- they are doing their best as well. But if it affects your ability to navigate your new life -- time to move on. I have seen 3 friends since HS since and all 3 rejected me -- still friends with one. one had back pain and was on opiods and she comes from a rich family so I said, go check out the tools at the MAYO pain center because the pain is only going to get worse -- then she stole my pain meds haha and told me I had to leave by tomorrow (it was December and my next MAYO was March) -- against plans, and flights were expensive so an ex-neighbor took me in, in Hawaii. another friend planned a girl's outnight dancing the day after I arrived -- she had no idea I had megoplastic anemia, was at altitude sickness on top), and you think you're being pretty specific about "my legs don't work -- it's SCI). No, they don't understand. And are pissed at you for being "sick." Then went to see eclipse in WY last year with friend who works in at a uranologist office, said she understood but when I got there -- she had no idea I was as bad as I was. People do NOT UNDERSTAND it takes you serious time to recover from what they consider basic. She is still pissed at me -- like I know what the 
