Have you ever been watching a gymnastics event, with all the springing, flipping, and balancing that is a part of the routine, and then thought to yourself, "I could do that"? Yeah, me neither.
But what I have thought of is that if some of those same gymnasts could look into MY world.....well, the word intimidation is a word that springs quickly to mind....as applied to the gymnasts, not me. I have already been blown away by my newly available abilities, brought to fruition by my Spinocerebellar Ataxia. I may not be able to flip, spring, and balance on a razor's edge anymore, (anymore is a deceptive description of days past because.....well, because I never could do these things), but here's what I can do:
1. The Grab Bar.
There is, on the back wall of my shower, a fifteen inch grab bar, and every morning it becomes the center point of my strong focal powers for...oh, roughly five to ten minutes. Now, I wouldn't necessarily call what I do a routine. I exercise with, and manipulate the bar, that's true. But what I do could be more accurately described as, "shower-survival".
I grab the bar to step into the shower, which in and of itself may not be a impressive show of acrobatic skill. Grabbing the balance-beam, (that's got a better sound to it, wouldn't you agree), when I close my eyes to apply soap to my face may not dazzle either, but the action really steps up to a different level during the hair-washing phase.
Unfortunately there are no judges watching, nor is there any film to document this, so you will just have to take my word it. In point-of-fact it's a first-hand account, and if I wasn't actually there I might not believe it.
First, after closing my eyes, and while lightly holding the balance beam in a death-like grip in order to avoid making a nonscheduled appearance onto the bathroom floor, I wet my hair. I then slowly reach behind my back, grab the beam with my right hand, and pull off a flawless one hundred and eighty degree turn, in a move that I have come to refer to as the Turtle Spin, because of the speed in which it is done.
Once the shampoo has been expertly squeezed into my hand, (a payoff that has finally been realized, after years of hard work and practice), I then grab the beam with my left hand, and the maneuver is reversed, pointing myself again forward and facing the water spray. I lather my hair, and finish the whole undertaking by closing my eyes, reaching out once again to clutch and strangle the beam in a one-handed grip of desperation, and rinse my hair.
2. The Synchronization Of Anything.....Anything At All.
I am finding that there seems to be a connection between my diagnosis of SCA and my struggled attempts to find any kind of synchronized rhythms, or patterns. The mere act of bringing my two hands together more than twice in a coordinated clap is proving to be a real challenge. Often it appears more to be the swatting away of imaginary spider webs.
All is not lost however because I can still beat out a pretty good rhythm, as I pound on my air-drums, upon any surface that is available at the time. Music has always played a large part in my life, and most of the time the infectiousness of the melodies will have me unconsciously taping my feet or drumming my hands in time right along with the song.
I can also use a walking stick, or cane, in sync with my steps. Oh sure, anybody can use a stick, cane, or crutch. The real question is, can they do it in perfect timing with their steps? Because I can, and I didn't have to practice first or anything. Even if most people COULD do this, I would still tell myself that it is pretty amazing. Hey, I don't mean to brag....I'm just saying. Really, what it's' like, is like having a second swimmer perform in a synchronized swimming event along side me.....the timing is impeccable.
3. At One With The Elements.
I am also able to flawlessly time the sun and be in the position to hide my features on demand from anyone...at any time. Some people call this ability a chance silhouette, or being in the right place at the right moment. But I call it raw talent. I mean, what else would you call it when someone is able to silhouette after their very first attempt? Natural skill, it can be nothing else.
Study the picture below. Can you tell if I'm wearing a hat and holding a stick? That's the power of suggestion, you think you see these things because I planted the idea of them in your mind. But those things are not there. Did I mention that I now also have incredible powers of persuasion?
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| my first attempt at silhouetting. |
4. Giving Shoe Strings The Slip.
More and more I find that I am relying on the slip-on shoe. It has become my go-to, my footwear of choice. I know what you are thinking, that I have abandoned the stringed shoe....that I have become prejudiced against anything with laces... because it has become just too hard to manipulate two shoestrings into a bow, (you have to imagine this sentence is delivered in a whiny, sarcastic voice).
Yes, it may be true that tying has become difficult, but I still make myself do it, and still own a pair of walking shoes that I wear occasionally. No, the reason I have begun wearing slip-ons more is for the sake, and convenience of saving time. And whenever I do, it becomes an act of body manipulation that is worthy of a game of Twister.
First of all, I can't just slip my feet in. For some reason the back of the shoe always folds over underneath my heel, and I can't just simply bend over and use my finger like a shoe horn to guide my foot into the shoe. Well, actually I could, if I put on a helmet or other kind of hard hat first because I would, guaranteed, fall forward every time.
So, what's to be done? I could sit down to put my shoes on, but that would just be silly. Can you imagine how crazy that would look if I were to sit down first, like a sane person might do in that kind of situation. I mean a guy could get a reputation doing something like that.
What happens next always reminds me of why I never played soccer, because to be good at the sport you need be able to pull off some fancy footwork, manipulating the soccer ball to do exactly what you want it to do, and go where you want it to go. I chase around my shoes for long seconds with my feet, until I am finally able to pin them in a corner or up against a wall and they no longer have any option but to let my feet in.
So anyway, all that is left to me is to remain standing and make the feet up come to me, because I have already established that I'm not going to them, if they want the privilege and convenience of wearing shoes then they can just come up to the top floor. However, this step in the whole process, (because I just had to slip in a pun), usually involves a trial and error period in which I try and jam my foot as far into the shoe as possible, and at the same time try and figure out which angle to keep my foot at as I raise it up to where I can reach it, while standing straight, so that it won't fall off. I referred to this period as trial and error because it invariably will take me three or four times to actually succeed in getting one shoe on.
And before you ask...no, I cannot apply the lessons learned from this current one-foot accomplishment to the other foot, thereby shortening the time needed for the second foot, because now I have one shoe on which causes a whole new equilibrium-planethingy, and the angle needed for the second foot is completely different. All I can do is reset the whole battlefield and run through the trail and error again. This is truly exhausting, but the funny thing is, that it still remains to be faster and easier than tying the laces on my pair of tennis shoes.
This has been an accurate account of some of the skills, and abilities that I have picked up since my diagnosis in 2003, with a few exaggerations, of course. I mean, what exactly is a equilibrium-planethingy anyway?
The point that I really wanted to make, however, is to encourage you all to think of the things that are still possible. The things that you can still do, or say from experience, that would be an encouragement to someone else. I also would encourage you to identify possible skills or abilities that have started to show themselves in your life AFTER your diagnosis.
Don't cut yourself short, each one of you has a unique perspective, and no matter what your stage is, or how long or short of a time you have dealt with your personal situation in life, I guarantee you that there is someone who can benefit from what you know. For example, I find encouragement from you all, in the varying forms of comments, support, and advice that you have given to me. You may not always be aware that you do, but as I observe lives lived bravely in opposition to the physical struggle that you all face, I am deeply encouraged. I dedicate this blog to all of you who have touched my life in one way or another.
