Monday, February 16, 2015

Clowning Around In The Circus That Is Ataxia

here is a link to the audio version, in case you would rather listen to this blog: www.youtube.com/watch?v=yGLx-MAbStE

This whole Ataxia-thing is like the performance of a major balancing act, which is completely the opposite of what will typically come to mind when one hears the term balancing act. Most of us think of the thrilling execution of a circus feat, done inside a large circular canvas tent. The act that involves an acrobat walking across a taunt rope that is suspended between two platforms, and is somewhere between fifteen feet and a mile off the ground. They usually have a long, weighted pole that helps them stay balanced while they inch along, trying not to stumble and fall. But, if they do happen to lose their balance, they know that there is a large safety net stretched several feet above the ground that will catch them long before they would make an unsuccessful re-entry into the earth's atmosphere and splash down. The balancing pole that I use is really more commonly known as a walking stick, and the slender rope that I am balancing on is.....well, it's pretty much the entire surface of the flat ground. And, unfortunately, there is no safety net that can be set up and stretched lower than this. It leaves me feeling as if I am perched and left to balance right on the edge.




Maybe, instead of using a walking stick, I should be using a long weighted pole. I don't see a problem with this, and I would think that for the most part, people would be agreeable to the idea of me walking around with a fifteen foot pole jutting out on either side. I imagine that once they saw and understood that I was doing this for balance that they would start clapping and break into wild cheering. Someone in the crowd might even start roasting peanuts, making cotton candy, and popping popcorn. There would probably also be several people in the audience, as it now has come to be known, who would be holding their breath, thinking that my next shaky step could very easily be the one that sends me hurtling down several feet to a bone-jarring crash. I suppose it is a good thing that I never aspired to run off with the circus as a kid, although I probably could have had a lucrative career as Clumsy The Clown, where everything I try ends up in an epic comedic disaster.

So, if it is not a high wire act that I am talking about, then what is the balancing act that I am referring to? It is the balancing chord that needed to be struck between sitting and standing, between activity and rest. I need to move my muscles frequently, and remain active enough so that my body does not begin to freeze up on me, making the abilities I still have lessen. Too much activity, however, and I become tired and more vulnerable to injury. It is a constant battle that is fought daily, and I have had to learn to listen harder to my body and pay closer attention to my limitations. In a lot of ways, the balancing act in and of itself has become a balancing act.  It reminds me in a very similar way to the effect you get when one mirror is reflecting another and it appears as if there are an infinite number of windows, all showing the exact same reality. I am not trying to over-complicate things, but the reason I say this is because, just as multiple reflections of the same object seems to suggest a certain amount of redundancy, so does the need to balance my balancing act. You could also say that, in many ways, the tightrope that I venture out onto daily, as I strive to safely move from one platform to another, is the narrow space that exists between activity and injury.

Another act that I perform on a daily basis, but which is nowhere near good enough to execute before a paying audience or in any capacity under the Circus Big Top, is juggling. Most of the time when I decide to start a project or a chore around the house I am juggling as to just exactly what type of mess that it will turn out to be. Instead of three rubber balls,or bowling pins, I juggle whether or not it will turn out to be just a mess, a rather large mess, or a Federally-declared disaster sight. At this point the juggling starts to bare a close resemblance to gambling. Jambling, if you will. Apparently I have just made up a new word, and look forward to being able to use it in everyday conversation. "What are you going to do today?' "Oh, probably not much, just got a little jambling to do."

And then, there always seems to be that one circus performer who always manages to insert their head into the mouth of a lion. The thing is, that whenever I have witnessed this seemingly brave show of confidence, the one doing the sticking in-of-the-head-thing doesn't actually look that assured. The lion of course doesn't look like this is a bad idea, I mean, really, how much easier could feeding time get?  But no matter what kind of brave front the human performer in this act tries to put on, you can still see the lack of confidence in their eyes. This must be the same lack of assurance that I have in my eyes when I approach stairs that I have to go down, tight places, or uneven walking spaces, because after my family asks me if I am okay in a particular situation, and I reply that I am, they will reach out and lay a steadying hand on me anyway. I suppose they have witnessed too many times when I will say I'm fine, and then stumble or fall. I am very thankful for those who hold my hand and support me, and would like to dedicate this blog to my warm and loving wife, and immediate family members who have helped me along this journey. Thank-you, I know it hasn't been easy, and I know there have been several frustrations over the last thirteen years. I just wish that somehow  I could keep my head out of the proverbial lion's mouth.








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