But I FEEL Like I can…
As my level of disability has increased over the time that I have had Multiple Sclerosis, one fact has become increasingly annoying to me. I have physical disabilities but in my mind, I still “feel” like I can do things that I cannot.
Before I was diagnosed with MS I was a regular bowler. I used to go every Monday night with a bunch of friends from work and at first, I thought it would just be a good way to get out and have fun but soon I became really competitive and I wanted to get better so I would, at least, be one of the best players in the group (I think I am just competitive by nature). Anyways, I fine tuned my technique and became a decent player; I bowled with a curve and everything (instead of the ball going in a straight line down the center of the lane you add a spin so it goes off to the side and right before it goes into the gutter in curves and hits the inside of the center pin). At the time, I didn’t think too much of it but in retrospect the amount of balance and coordination needed to simply bowl sort of amazes me. See, now I could not even lift the ball up and swing it behind me without falling due to my balance. My aim is so poor that there is a good chance that I will miss if I try to throw a crumbled up piece of paper into a trashcan just a few feet away. I could no longer take the 3-5 large steps right before releasing the ball because of my spasticity. So many of my symptoms just destroy any chance of being able to bowl again but what annoys me the most is that I still feel like I should be able to bowl. I can still imagine exactly how I need to hold the ball, how my fingers need to roll off the very edge of the finger holes just right to put a perfect spin on it, the footing, exactly how far to swing my arm back, the right speed, everything, every muscle movement in every limb, it’s all muscle memory but if I try to physically do the things my brain is telling my body to do? I can’t…
I can say the same about so many things; running, walking up the stairs without holding onto the railing for dear life, writing with a pen and paper, swimming, riding a motorcycle, playing piano, jumping, climbing huge rocks while hiking, and so many other little things. Little but unbelievably frustrating when you realize you just can not do them anymore! I imagine it’s equally frustrating to a cat when they cannot get that little red dot (laser pen).
“My paw is on it but I can’t feel it, nothing I do will put an end to that strange little bug, I swat, swat, swat but can not smash it. Why???”
And the thing is, it’s not that I have not accepted the many changes in my life. I know I can’t do certain things anymore and I have long ago come to terms with that. I am specifically talking about the frustration that comes from knowing how to manipulate your fingers EXACTLY to do something but then when you tell your hand to try, it doesn’t do anything even close to what you are telling it to do. The precise directions are there in your head but your body can’t follow them. If I were to grossly over exaggerate it I would say it’s like a limb being paralyzed; you tell it to move but nothing happens. You are staring at it but it just lies there, limp; it’s like your brain is sending a message to your limb but it never makes it there, just a couple feet away!
“Maybe if I think really hard the message will force its way there?”
But it does not. Now we all know why not, I know that “the message” is literally unable to make it from point A to point B, I am just trying to paint a picture of the frustration. It’s like you are yelling and screaming at the top of your lungs in your head but no one can hear you and nothing you do will make it any louder.
“I know what I want. I know how to do this. I have done it a million times.”
But now it’s like all of a sudden something that has always just worked stops working. Something you have always been able to do, you can no longer do. It drives me insane sometimes. I understand what is going on neurologically, I know, I don’t want you to think I don’t. I can’t stress that enough, this is not me wondering why something isn’t working; the question “why” is more rhetorical here. I am just saying that even though I may know exactly what part of the brain, which nerve or what muscle is damaged, I still from time to time can’t get over the fact that “something is just not working” anymore. Something that all your life has worked without question, something you have never even given the smallest inkling of thought about, like moving your foot; since birth it has always just worked but now it has randomly just stopped working.