There, Following The Flinch, Go I.

 here is a link to the audio version, in case you would rather listen to this blog: www.youtube.com/watch?v=0S8R1Yrp3xc

   Before I begin writing on the subject of this next blog, I would like to expand on, or add something onto the previous blog. I introduced the idea of the Upright-Bug, and a few differences between the Unique, or handicapped, and everyone else who is affected by the bug.

     In my writing it appeared as if everyone is one or the other. I continue to hold this as true, but what is also true is that within the larger group of infected lies a sub-group that lives in both worlds. I call them the Passionately-Reformed. They are the ones who choose to walk daily beside someone who is handicapped, despite what challenges that living, and working in the world of the infected may bring.

     We are unique, and we are strong, but let's face it, we all need the loving support of the Passionately-Reformed. They help us in so, so many ways. This group does not receive nearly enough credit, and over the years I have encountered many, some who have made smaller gestures throughout the day that have reached into my world, and have helped me, like a coworker. Some who have been with me, laughed with me, cried with me, and walked beside me since the beginning of my journey, like my loving wife, family, and friends.

     I wish to express my sincere gratitude for the love, caring, and support given so freely by this special group of people, and if you are one of the unique, I would strongly encourage you to thank the Passionately-Reformed that have touched your life.

    Well, over the last several years that I have stumbled, fumbled, and bumbled my way through life, with Ataxia along for the ride, I have discovered the truth that everyone who has a received a diagnosis of Spinocerebellar Ataxia have a common physical affliction, but that over the course of time, will begin to develop and manifest their own unique twists, or physical quirks. Where the diagnosis begins, and the main connection in all of us who have this form of handicap, lies in a degenerating Cerebellum, which will always lead to a marked lack of coordination.

    We will all begin a struggle at this point to simply do the physical things that used to come so easy to us, and that were taken for granted. The difficulties of walking, eating, and speech are pretty much universal. However, there are some physical traits that are either shared by a few others, or that are individually unique.

    For example, I am a flincher. I flinch. I have always been a little "jumpy", but just like the addition of salt will enhance the flavor of food, Ataxia came along and "salted" my flinchiness. I don't think flinchiness is a proper word, but whether it is or not that is exactly what my Ataxia did for me, thank-you very much.

    Or like a wine that is added to an already fine meal to bring out the, yes...well, I'm sure you get the idea. The tendency that I have to jump, startle, and/or flinch has now been shifted into a higher gear by the very real presence of SCA in my life, and has become a potential source of injury as I more often than not typically break a simple rule learned from childhood by going right ahead and leaping before I look. Either that, or my reluctance to remain calm leads me to a mounting sense of frustration, as was the case just the other day.

    I had been using a spray bottle of disinfectant around the house, and was putting it away. But before returning it, I decided to fill it so that it would be ready the next time that I needed to use it. I then bent down to place the now full bottle in the cabinet under the kitchen sink, were I had several mouse traps cocked, locked, and ready to spring. Do you see it coming? Because I saw it coming, but when I touched one of those spring-loaded landmines with the bottle, and it shot up into the air, I....well, I flinched anyway, successfully jerking back in what can only be described as fluently-erratic, and threw the spray bottle towards the refrigerator.

    And even though I had twisted the spray nozzle back on the bottle firmly, it still popped right off, (because, you know, why wouldn't it?), gleefully spewing forth it's contents, sharing all with my newly waxed floor while merrily rolling around, completely unconcerned and free. I had a few things to say in that moment, and didn't feel any restraints in expressing myself, but when all the clean-up was done, I was able to look back on the incident and have a good chuckle at myself.

    I am not now, or ever was, a good dancer. I can admit this. I never had a friend brag to someone else about my mad dance-floor skills or try to talk me into entering any serious dance competitions, just simply because I would be a shoe in (get it) or because it would be a crime to not let people experience my brilliance and liquid movements on the dance floor.

    The fact of the matter is, that I have always found dancing to be extremely awkward, and as a kid I tried my best to avoid any situations that might call for the need to dance. But growing up I did have that one friend who loved to scare me because he knew I was a flincher, and that within the brief and fleeting moments of my startled flight, that I would invent some new body contortions and dance moves that would rival anything seen on Saturday Night Fever.

    And really, all that I can say right now about dancing is that Ataxia has taken an already awkward situation and enhanced it. This was done by a methodical extension of the repertoire of moves that already existed in my flinching bag of tricks. Forget about Saturday Night Fever, I could write and star in a movie called Twenty Four-Seven Fever. I could also change Staying Alive, a song from that movie, to Staying Animated.

    One of the things that has developed over the years, and that has really helped me to keep my handicap in perspective, is that I have begun to see my Ataxia as a separate person. This is the main reasoning behind the overall main title of this blog. My Ataxia is always there, and I see it as a constant journey, with Ataxia coming along for the ride.

    I have written before that my Ataxia is like that annoying person who is always wanting to tag along, always bumming free rides off me and never paying for gas. When I get up at night, I try to do so as quietly as possible so I don't disturb anyone else or wake up the enemy (Ataxia). Just once I would like to walk to my recliner or the bathroom at night without Ataxia tagging along. But it really doesn't matter how silent I am, (or think I am), Because the second I even open my eyes, there he is, staring at me like he has been watching me sleep, just waiting for me to wake up, and is now ready for anything. "What are you doing? Where are you going? I better come with you....." Ugggggghh, I can't make him stop! GPS units have nothing on Ataxia, he is the ultimate stalker.

    But, I said that thinking of my Ataxia as a separate person helps me, and here's why. One of the reasons is because thinking this way gives me someone else to point the finger at, someone else to blame. This works in a very similar way as when one blames a household pet. As in,"I didn't knock that plant over and spill all that potting soil on the rug", or, "don't look at me, I have no idea how that glass of water got spilled", or,"what? I don't smell anything". See how that works? It's always that guy named Ataxia's fault.

    The second reason is this....because I know that a day is coming when I will truly be free. Ataxia will get up, expecting the same old routine, and I won't be there. He will wander around, looking all over, but it won't do him any good. I can just imagine Ataxia coming back to my house, after having been out searching all day, to check and see if I have finally shown up and being told that, "he does not live here anymore, and sorry, but no he did not leave a forwarding address."

But until that day, I will continue to go where my flinching leads.

I Would Imagine That It's The Way You Look At It.

    here is a link to the audio version, in case you :would rather listen to this blog: http://youtu.be/W1SnjbA2NQk

    When I was a kid I spent a lot of time in a world of imagination. In my mind's eye, the imagined path was so real that I would have to alter my course so as to avoid a potential hazard. As in the case of when I would fly a futuristic spacecraft and have to dodge large asteroids (arms outstretched, while running, and making impressively realistic rocket-ship sounds).

     Or at other times, I would find myself safely standing upon of a large rock outcrop in a cave that I had been currently exploring. I would climb, crawl, and shuffle my way into a big underground room, only to discover that between myself and the next passage that I needed to explore lay a massive, (at least ten foot-wide), pool of molten lava.

     But this was no ordinary blazing-hot puddle of liquid fire that would mean a sudden, and painfully scorching death. No, this particular lava pool was also teeming and swirling with girl germs, and the only chance that I had, as a fearless four-year-old explorer, to gain safe access to the other side was to jump from one rock plateau to another. Although I was faced with the fiery liquid, and now this new bio-hazard, I never lost heart. I knew what challenge awaited me, and I knew what needed to be done.

     Never once did I question the seemingly simple things, like why three-thousand degree molten rock would melt everything else that it touched, but not seem to have any significant impact on other rocks. All I knew was that I could leap from one of those big rocks to the other and they would keep me safe.

     Of course, the rocks that I was leaping on were our living room furniture, and the important role of molten lava was being played by the living room floor, which was covered by a very 1970's-style orange shag rug. The orange colored carpet was a nice touch that really helped to sell the illusion in my mind, and to this day I have to wonder if the main factor behind my parent's decision to buy a carpet that resembled a bed of blazing fury, was just to aid me in my imagination-world. Probably not, but somehow it really helped to sell the fantasy.

     I don't really play this game much anymore, ( and of course I am using the term "really" very loosely) ,but if and when I do, it's a Ataxia-modified version, in which as such, I don't so much as leap from rock to rock anymore, but rather kind of just stand in one place with my walker and scream for help.

The carpet is brown now, so I have to pretend it's some kind of toxic-sludge/quicksand type of thing.

    Through the growing up years my imagination served me well, and helped me to end the boredom while engaging in the chores that were assigned to me by my parents. Raking the leaves in the fall, or the grass in the summer, became instead a call to gather in, and bring together all the leaves or blades of grass that where scattered throughout the kingdom of the front yard, or the distant villages of the sides and backyard.

     These gatherings would all come together in a centralized place to form several piles, or as I liked to think of them, several large armies. I would then walk from pile to pile with a transport vehicle, (wheelbarrow), and hall them all off to one big pile, (training camp). I was also called on to perform household chores, and sometimes when I would vacuum the house for my mom, I would imagine that there were little people living in the carpet, and that they were trying not to get entrapped by the large suction storm that had suddenly, and without warning, descended upon them.

    School was also a very fertile place for my imagination. I remember thinking, while I studied a world map in grade school, that if I would place my finger on my exact location, a rather large, and somewhat pudgy finger would descend out of the clouds to squish me. I also loved to read when I was growing up, but I would very often find that it was hard for me to read my school books.

    To get through them, and learn the things that I needed to know, occasionally I would fancy myself to be a secret agent. As such, I was in desperate need of finding a very important hidden code that was dispersed throughout a chapter that was my assigned reading for the week, and I would actually have to read all of the pages word-for-word to find what the secret was. If it turned out that I just so happened to absorb the other information that was in the chapter, while in pursuit of a code that would save all of mankind and make me a hero, I would consider this to be a perk of the job, one that could only serve to make me a more well-rounded agent.

    How does a vivid imagination currently work in my life, as pertaining to my Ataxia? Wow, that is a very astute question, and I thank you so much for asking it. I will attempt to answer.

    Lately I have begun to envision that there is a highly contagious, and rampant neurological disease spreading around the globe that has been tagged as the Upright-Bug. Symptoms manifested by the infected are perfect balance, clear speech, and the ability to eat without spilling or choking. There are several different manifestations, and groups, that are resistant to the virus, and these people have come to be known as handicapped, or uniquely gifted.
 
   One of these groups, or communities, has a resistance that has come to be known as Spinocerebellar Ataxia. Very little is known about these peoples' highly impressive ability to fight off the Upright-Bug, accept for an MRI that is undergone by people within this group which is known to show a significantly smaller Cerebellum. But don't let that influence you, because these people also show a higher brain function and intelligence  (I couldn't help but throw that one in there).

    The general population that is affected by this devastating Upright-Bug have lately become jealous of the unique people, and in an attempt to selfishly identify with this group, a few of the affected have begun to park their cars in spaces that are clearly marked for the handicapped. Some of the affected have also discovered that it is possible to achieve a temporary handicapped lifestyle through the consumption of alcohol, but always seem to sink lower into a jealous despair when they sober-up and realize all over again that their handicap was only for a fleeting moment.

     In fact, in an effort to cheapen the purely handicapped lifestyle, and make themselves feel equal, the affected have begun to accuse those that are legitimately unique, and resistant to the devastating Upright-Bug, of drinking and only pretending to be unaffected on a permanent basis.

Here I am, enjoying another beautiful day that has been unspoiled by the Upright-Bug.

So, do you see....It's really just the way that you choose to look at it. Don't let yourself be defined by someone else's misinterpretation of your unique handicap. Don't imagine yourself as less-then, but envision greater things. And....at least we can say that we don't have the Upright-Bug.

A Number Two Pencil Is Not Required

here is a link to the audio version, in case you :would rather listen to this blog: https://youtu.be/bQ_FUZvrXgI

Now that another summer has flown by, and a new school year is upon us, I started to think about what was the worst part of my academic performance. I would have to say that the hardest, and most challenging part, revolved around taking tests. Any kind of test, no matter what the subject was. It didn't matter because I would experience a brain freeze that was equivalent to sucking down a thirty-two ounce slushie in  about fifteen seconds, (I don't know if that is actually possible, but if it were I would imagine that a person would have a major head-rush). The panic would first take a firm grip on my young mind when I heard from the adult authority in my classroom that the test would require the use of a number two pencil. This statement was said with such surety, and in a commanding voice, that I was utterly convinced that if I had anything but the required number two, say even a pencil that was a two-point-one, that I would fail in every aspect of life from this point on. Next came the challenge of putting my name on the paper before the test could begin, which felt to me to be some kind of pretest, like the people who had put this standardized test together were trying to first determine if I was intelligent enough to even take their test. I doubt very much that it would even have helped at this point if the multiple choice portion of the test had begun here because I still, more than likely, would have even gotten my name wrong. I would have panicked, attempted to swat away the black spots that were dancing before my eyes, and picked choice number E, which stated that A, B, C, and D were all correct. I would have been playing the odds, because what I had discovered was that usually when there was a choice that would combine several answers, that this choice would invariably seem to end up being the correct one. Unless of course it was a trick question, designed to make you think. These kind of questions were the worst, because then I would always find myself trying to work out if this particular teacher was crafty enough to do that sort of thing. Everything would be factored into the equation, from what kind of car they drove, who they hung out with while monitoring the lunch room, who they spoke with in the hall, and what they snacked on at their desk while we were supposed to be reading. I was a profiler long before the word was tossed around on every major cop show on television. Really ,though, the only legitimate chance that I would have had at this point to get my name correct would have been if this part of the pretest would have have been true or false. Well...at least I would have had a fifty-fifty shot.

And that is exactly what my Ataxia feels like much of the time. A true or false, black or white, fifty-fifty shot at getting it right. Like my Cerebellum is saying that it doesn't matter that I stayed up half the night reading The Finer Points Of Walking, or, Clear Speech For Dummies. That it will decide how things will work, and that the best I can do is guess, and hope that I am right. Or at the very least, that my body is grading on a curve. It feels that way much of the time, but it doesn't actually have TO BE that way. Life with a handicap does not have to feel like a physical true or false test, like there is only one way for you to accomplish a task. It does not have to become a multiple choice test. It doesn't have to become any kind of test, unless you want it to be. In my life with Ataxia Along For The Ride, I have discovered that it has become about continually striving to learn new and better ways to deal, struggle, and coupe within daily activities. I have learned that my life has become one in which I continually have to adapt. The questions, I find, are always the same; how will I get dressed, how will I eat, how will I get from this point to that point,ect, ect. But I find that the answers continually change and are never wrong, just every one of them becomes a different way to solve the same problem.

And the best part of this whole thing? A number two pencil is not required.