But, This Is What I Said....

    As I’ve said before, I prefer to think of my Neurological Disease, regarding how it has affected my life, in positive ways rather than negative. For example, through NO effort on my part, I am now bilingual. What I have referred to in the past as, "Cursive-Speech," may not be a dialect that is currently recognized the world over as an official language. Nor is it one that is tied to any particular ethnic group. However, the fact remains that with each passing day, I am becoming more and more fluent.

I was thinking the other day about all of the different ways, and the inventions over the last 3 and a half years that I have written about in the blog known as, My Life- A Journey, With Ataxia Along For The Ride. With this in mind, I thought that I would go back to those previous writings and pull a few quotes out for your enjoyment, along with a few prior pictures as well. This will in some ways be like the greatest hits...but in no way will it include everything, just a few of my favorites...beginning with the above reference to an Ataxia dialect....
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.....Could slurred speech please be recognized as a second language? Maybe it could be called Cursive-Speech, you know, since Cursive's brief association with that whole writing stint appears to be done now. No one even uses it anymore....and the ancient art of Cursive writing is just sitting there...up on the shelf! It is only gathering dust...so why can't we reassign it to the area of speech and make it usefull again? That way I could be bilingual, as Ataxia already seems to come equipped with this ability.....Unless I hear that there are any objections, (and I can't hear anyone speaking up right now), then I am going to go ahead and refer to slurring as Cursive-speech. It just sounds more sophisticated than slurring, which is something you do when you're drunk. I'm not.

.....When I was diagnosed with Ataxia at 38, the old half-burned-out light bulb that is my memories, flickered and sputtered...and then came fully on. Why? Because this explained so much, my whole childhood raced glaringly through my mind’s eye, and I took a long walk,( or stumbling shuffle ), down memory lane.

.....Another example of the new tendency towards a life of constant upheaval was my unwavering attraction between anything harder than the surface of my eye and my eye. The one physical ability that has proved the test of time is my talent for poking myself. Like a 2-year-old who is always putting things in his mouth and/or inserting objects into the outlets, I am constantly prodding, poking and inserting things that were never intended to go into my eyes. The only difference is that the young child does these things out of a sense of exploration or curiosity. I already know what my middle knuckle feels like when I use my eye to stop it as it travels at warp speed. I don’t need to explore the possibilities, thank-you.

....Crowds are another serious obstacle for me. I use the word "serious" because most things are one or the other, a challenge or an obstacle. Crowds are both, an extreme overachiever

....  So, what’s the bottom line, you ask? The bottom line is that I don’t recall ever ASKING for my life to go this way. What’s it like? It’s a lot like answering your front door to find the Publisher’s Clearing House Prize Team. Through streamers, confetti, and general fanfare, they declare in a very enthusiastic shout that it is your lucky day, your ship has finally come in. You, of course, are a little excited, but at the same time, a bit nervous as well and wondering if this is indeed happening. You are then informed that, although your ship has indeed arrived, it is a patched up rubber raft.

.....One of the problems I am facing right now is that the brain is responding to situations instantly and sending signals that it expects to be obeyed without pause, time for reflection, or regard to reason. 

.....I used to enjoy being able to sneak into the kitchen and get a snack without alerting everyone in the house or the next door neighbors. In and out without a trace, and I could enjoy that second or eighth cookie without tripping the alarm. Now I bang into everything, drop most stuff multiple times, and generally cause such a calamity that it would have been quieter to shout, "I'm going to be a pig and have a second bowl of ice cream"!

.....Ataxia showed up in my life like a loud, obnoxious party crasher. It barged its way in, interrupting the peaceful proceedings, appearing to be already half drunk like it was just gracing my festivities after having previously been at a different event.

.....Through the vision of fantasy I approach a problem as confidently as James Bond, but through the haze of reality I fumble and flap around like PeeWee Herman.

.....I am seriously thinking of opening up a restaurant that I would name Che'SpaZtic's. The theme would be, Where friends are always welcome, and the food is always flying!

.....I'm thinking of opening my own gym, after the highly successful restaurant that I wrote about in a previous blog, Che'SpaZtics, is up and running of course. There I would teach a form of Martial Arts that I will call Attack-Cia Karate. I would practice this form out in public, and I can imagine that the comments may be heard as something like this, "Daddy, look at that funny man, it appears as if he's having a seizure as he walks down the sidewalk." "No son I heard about this, I think he's practicing a new form of handicapped Karate."

.....Sometimes, not all the time, but sometimes my Ataxia can feel like an annoying acquaintance who is constantly bumming something off me. If I go anywhere, it is always there to ask if I would mind giving it a ride? " Hey can you swing me by....?, or,"Would you mind....? Honestly, I feel like shouting, " YES I WOULD MIND, WOULD YOU PLEASE,  PLEASE FOR THE LOVE OF ALL THAT'S DEAR, JUST FOR ONCE, LEAVE ME ALONE"!?

.....It seems to me that if one of these fast food chains wanted to really make a great happy meal that they should include a new Cerebellum with each order instead of a toy. At least make it an option!

.....Going in to see a Neurologist is, in a lot of ways, like taking your car to the mechanics. You can't just give the mechanic your car key and say, "The car won't go." They need specifics, something along the lines of, "I'm starting to backfire and stutter....uh, I mean the car's exhaust is starting to backfire and stutter when I creep along or go slower than 5 miles an hour....

.....There are a few things in my life, I have come to realize, that are incredibly consistent. One of which is the invitations to do bodily harm that I receive from gravity.  I keep trying my best to ignore its hospitality, but it never seems to be discouraged, relentlessly sending out invites every day.

.....At least, as of the current date, I haven't located any little portholes, like behind my ear, that I can stick a bent paper clip into and have my balance put back to factory specifications. Nor have I yet to discover any combination of movements or body manipulations, like sticking out my tongue while squeezing my nose, that will enable me to speak clearly.

.....Writing has become an issue, but I don't believe that it is my fault. I think my penmanship is perfect and that I am a victim of a systematic plot to make me look incompetent. I believe that all pens and pencils have small identification sensors in them that allow them to know exactly who has picked them up and is trying to use them. They then have the power, through internal programming, to write illegibly. I mean, how else would you explain the fact that my brain is telling my hand, in exact detail, what to write or draw and it just can't seem to do it.

.....One year later, although I still have cat-like reflexes, the rest of the story is that, sure, they continue to be cat-like....but it's a cat that has gotten into some fermented catnip, has already burned through eight of its nine lives, and is halfway through the last one.

.....I am, however, in endless competition with myself, and as such, wondered what it would be like to execute simple household chores while being timed. I could then strive to break my own record, while enthusiastic sports commentators would be delivering a blow by blow account of the frenzied action. And when I say, "frenzied action," think half-frozen molasses being poured through a pin hole.

.....Ever since the official diagnosis of my physical disability, I feel as if I have been engaged in a massive wrestling match. A contest where I face a huge opponent, and I am seriously and woefully ill-prepared, out-matched, and generally viewed as the underdog's underdog.


.....I'm really not sure how this keeps happening, but my working theory is that something, or somebody, is adding minute amounts of weight to my shoes every night. I have been noticing over the course of the last year or so that it is becoming more and more difficult to lift my feet when walking, and this causes a shuffling, which brings about a falling.

.....If at first, you don't succeed.....and if you have Ataxia you probably won't. At least that seems to be the case with me. In fact, I was, and have been thinking, that it would be nice if I could simply skip the first, second, third, and most likely the fourth attempt and go straight to the final act of accomplishment.

     Well, there you go.....just a few of the things that have been part of my writings over the last three to four years. There are much more...and who knows...I may submit another blog like this one. Let me know what you think.

That's What They Say, Anyway.

  Here is the audio version of this blog: www.youtube.com/watch?v=n02BNlJF-Qc   

     As I tripped and fell the other day, for perhaps what could be the thousandth time, I had a moment to reflect before I hit the ground. In that brief second, three things occurred to me. For one, I realized that I was, at this exact moment, currently engaged in what could very well be a spectacular anniversary of falling. The second thing to quickly present itself was that if this fall is indeed an anniversary fall, then maybe I should be celebrating the milestone in one way or another. My third reflection surrounded the notion that falling seems to be coming much more naturally for me, and now seems to obtain a certain graceful fluidity to it... while other people seem to really have to work at it. As I fell, I also began to have all of the catchy little advertising phrases, helpful limericks, and musical jingles that we hear, cycle through my mind.

     I am not the kind of man that feels comfortable wearing pink.... nor do I see myself bearing any resemblance to the Energizer Bunny. Maybe, I thought, if the bunny was wearing a Timex Watch...and this leads me to think about the familiar slogan.... where the little bunny would now be able to take a licking and yet continue to go on ticking. In my mind, this familiar little jingle was changed to a saying that would better fit my Ataxia. One that would instead go something like this, ".....takes a licking and keeps on bounce'n.....off walls.... floors.... the ground, etc... etc."

    While laying on my back in the driveway, having just finished a grand fall backward, I realized that I don't know my neighbors very well. They seem to be good people, but at that moment I realized they are not anything like the good people at State Farm....who, by the way, were not there. ( Take a second, it will come to you.) But, lest you think that I am only going to pick on the good neighborly people at State Farm, I should also mention that the good hands of Allstate were also not anywhere to be found. Of course, this could entirely be a reflection of the fact that I do not have a current policy with them. Nonetheless, the jingle that I have heard since infancy was not enough to keep me from striking my unattended target.

     My journey with Ataxia has also significantly reversed the order of how some things now progress throughout the day. An example of this kind of event lays within the saying which states that what goes up, must come down. For me, this statement has become, what goes down must once again get back up. I suppose, though, that one could argue the validity of this. Because in order for me to fall down I had to first stand up, which would prove the original statement as true. However, it can also be argued that in order for me to stand up I would first need to fall down....or else, what would I be standing up from? I'd already be standing, wouldn't I? It's a bit of the whole chicken and the egg thing. Best to not think about it too much, but just accept it on faith.

     While I am on the subject of the chicken and the egg, and which one came first...my days are filled with similar questions. Only I am plagued with questions like, which came first; the stumbling or the spill? The good intentions that I had, or the huge mess that I left in my wake? The misstep, or the Ataxia river dance? I suppose that the answers to these questions of mine don't really matter...as the prequel and the main event seem to always go together, and appear at times to even be interchangeable.

     I could keep going with making correlations between many more quaint little sayings and quips that we all know. Instead, I am going to leave you with my thoughts on just one more. The saying goes that all that begins well, ends well. Physically? For me? Uhhhh....no, this would NOT be the case. However, I do not think that this phrase is referring to the physical alone. Mostly, I believe that it is referring to an attitude....more specifically, my mental and spiritual outlook and state of being. Yes, I experience physical trials, disasters, and frustrations throughout my day...but I have learned that these things have absolutely no control over my will. My ability to love, laugh, enjoy loved ones, and to share myself with others is not, or will it ever be, tainted by Ataxia.

   Like the reflections on the river that I am standing next to, the outlook that we have, and the attitude of our heart, is a reflection of us. Ataxia is only a physical symptom...do not let it become a reflection of who you really are.