Sorry, But Some Things Are No Longer Optional.

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

    There are two small dogs who live at my house.

    In short, what this means is that during the day, I am the only one at home, and thus am the only one to provide walks and potty breaks for them. This, in turn, means that I wear slip-on shoes all day.

    Why? Because I have both inside shoes, and I have outside shoes. The inside shoes are so that I protect my feet when stumbling around the house, and the outside shoes are so that I can walk wherever I need, without the worry of tracking dirt and such into the house. If I didn't wear slip-on shoes, then my day would be completely tied up with the tying of my shoes.

    I would be spending six to seven hours each day just on my shoes alone, and two of those hours would be consumed by the rest stops and/or naps that have become necessary for the rebuilding of my strength after successfully conquering one shoe, and before starting on the other foot. Melissa would come home after a long and stressful day at work, ask me how my day was and what I did, and I would respond with, "well, I got my shoes tied", like it was some kind of major accomplishment.

    Seriously though, sometimes I wonder if splitting an atom, or bringing together matter and anti-matter would be easier and less time consuming. Alas, the days of the thirty second shoe-tie are a thing of the past and I only wear shoes with laces when I know that I will be wearing them all day.

I am pointing off into the distance to indicate that the days of the multiple-shoe-tying sessions have disappeared somewhere over the horizon.... 

   I  really don't want to brag, but it only took me thirteen years to discover that I can't just jump up out of my seat and rush somewhere when any old thought or mood strikes me. Those days are also long gone, and now I need to stand up slowly, while holding on to something, (something other than myself, because that just wouldn't be of any help), and just stand...frozen until I am confident enough to step forward, being sure that my legs will stand-up in their duty to support me.

    Most people would learn this lesson about themselves after one, or maybe two, bad experiences. But I am not like most people. I think that what it was, in all honesty, was that I have been running an experiment over the last thirteen years regarding my instant, on-demand balance. I am now ready to make a formal statement of my finding, which is.... that I don't have instant, on-demand balance. Took thirteen years, but I just wanted to be sure.

    Another thing that is no longer an option for me is, well....now that I have voluntarily given up my driver's license, I can no longer be a getaway-car driver. Oh, I suppose I could be, but it wouldn't be legal, and I wouldn't want to be caught fleeing a major crime scene without the proper documentation. Seems to me like a person would never really be able to bounce back, or fully recover from something like that. I mean, that sort of thing could go in my permanent record and could haunt me for the rest of my life.

    The only driving that I do these days is on video games.

Notice that I am turning the wheel to the right and the steering wheel on the t.v. is still straight? Yeah...I need to work on my video-driving skills.

Nope....not to the left either.....I'll keep working on it,

    Another daily chore in my life that looks different now, one in which, again there is no option to go back to, is brushing my teeth. To be fair though, not all of the credit for the predicament that I currently find myself in can be blamed on my neurological disease. There is another factor at work here.

    About a month ago Melissa decided that I should grow out my beard, and because I am no longer a spring-chicken, my usual red beard is half grey. This is only a problem when I have engaged in the previously mentioned brushing of the teeth. Because of my Ataxia, there is a lack of total control over the toothbrush, and it has subsequently been allowed to wander outside of the mouth, spreading tooth paste evenly around my chin, and cheeks.

    When my beard was kept short, this could be easily spotted because there wasn't very much grey, and as such the toothpaste was quickly identified and rinsed away. However, now that a lot of grey has come in, I can never be quite confident as to whether I am walking around with just an old-guy silver beard, or looking like I just really enjoy my toothpaste. The only way that I can know for sure that the grey coloring is my beard, and not paste, is to immerse my head in a sink full of water to completely wash my face, but then I feel like I should put a few apples in the sink so that I could at least do a little bobbing at the same time and make it a fun game for myself.

    The days of trying to do anything quietly around the house are, also,  all but gone. I don't know when the phrase, "it was so quiet that you could hear a pin drop", was first used in conversation, or who was the one to say it. What I do know for sure though was that they were not talking about me, because if they were the saying would be, "it sounded like a bowling ball that was being violently tossed about in a glass store".

    Oh well.....these days I find life to be much easier if I just drop the pretense of even trying to be silent. I am no longer surprised at dropping things four, or twenty times.... I am surprised if I don't. If this happens more than once a day I start looking for the thermometer and seriously think about calling my doctor.

    Well, friends, we are moving into the Holiday Season, and from my house to yours, we wish you a blessed time. It is hard for me to believe that 2015 is drawing to a close. Time seems to be moving ever swifter, and as I walk through life with Spinocerebellar Ataxia, I do so with the confidence and assurance that we walk this road together. Cheers, my friends.....take care and stay safe.

Rearranging What Is Changing.

  here is a link to the audio version, in case you :would rather listen to this blog: https://youtu.be/Bcd4tJK5iDU

    Unless you are referring to the kind of change that you will receive if you use, say, a one hundred dollar bill to buy a pack of gum, then the prospect of change can be an unpleasant experience.

    I don't know much, but one thing I do know, is that over the years I haven't always done the best job with being able to immediately handle the changes that have come barging rather rudely into my life.  I usually land somewhere in the middle of a sliding scale comprised of kicking-and screaming on one end, and a epic temper tantrum on the other.

    But whether I like it or not, change is a constant, always weaving it's way through my life. This is especially true with the presence of a degenerative neurological disease. However, given enough time, I will usually become reconciled with the forward-moving changes, and arrive at a place of acceptance, peace, and adaption to the newness that the these will bring to my life.

    Over the past two years that I have written this blog, I have done so with a light heart. I have exposed, and shared with all of you, the areas in my life that I have struggled with, been frustrated over, and found strength in and through, while at the same time, trying to show the humor that I see in it all. Not one word that I wrote in any of the past blogs was untrue, and yet.....it doesn't mean that there are not moments that arise in my life that I don't struggle with.

    My writing has been born out of a desire to be an encouragement to others, to lead by example, and to give support to everyone who lives every second, of every moment, of every day with a form of this neurological disease, which causes the condition known as Ataxia. To this end, I share the following:

    My life has been on a amplified course of change ever since the diagnosis of Spinocerebellar Ataxia in 2003, and I am again facing another change in my life. But, even though it is very frustrating, I have already determined that it will not get the best of me. I have arrived at the place where time, and my body have come together. My body, as I see it, is committing an act of treason, but again, I have become reconciled to the next stage of change, and this has led me to the inevitable conclusion that I need to give up my driving.

    Not just my driving but I also need to turn in my license. I will be honest, that as I write this, I just can't think of any jokes. I am doing better with this than just a few days ago, when I arrived at this decision, but it is still new enough that I am not seeing any humor in it. Well...accept for the fact that everyone else on the road can now give a collective sigh of relief. I mean, for crying out loud, I taught all my kids to drive, and that was...what, just last week! Okay, okay...the first one was eight years ago, and the last one was almost four years ago...but dang it, it feels like last it was just week!

    Anyway, I just wanted to be honest, to let you see the changes in my life, and to assure you all that these things may temporarily knock me down, but that I will yet rise again and continue to fight. That no matter what changes come into my life, that I will continue to rearrange and adjust. I also would like to encourage you, friends, that on this life journey we would face the changes together, and that you would continue to laugh, love, and struggle well, right along with me.

Change can be stunningly beautiful!

Something may come along that will try to block my path.....but I will just smile, peek around it, and move on.

Dining Out Ataxian-Style

  here is a link to the audio version, in case you :would rather listen to this blog: www.youtube.com/watch?v=NzF4HLqnqec

    Have you ever heard someone use the expression, "it's right there, on the tip of my tongue"? I think most people have heard or used that phrase before, but if you haven't it is just a simple way to convey that you either have a thought that you can't quite formulate, or that you are having a hard time coming up with the correct words to describe or explain something.

    This kind of situation happens to me quite a bit, and often it feels as if someone is dangling a thought or phrase, the exact one that I am currently looking for, just out of my reach as if I were a circus animal and they wanted me to sit up and beg for an audience. But, what usually happens, is that the minute I stop trying so hard to pull the thought into my grasp, it will simply appear before me. All I have to do now is reach out and take it, although with an SCA, I will have to grasp at the thought a few times before I am actually able to rap my mind's clumsy and wooden fingers around it, and obtain a firm hold.

    However, grasp it I finally do, and experience has shown me that once I have maintained a solid grip on a thought, I then need to clutch it in a stranglehold, and write it down as quickly as I can. Sometimes it feels as if I only have minutes before the thought will squirm itself out of my embrace, spring off the tip of my tongue where I originally found it, and slip off into the night never to be heard from, or seen again. Recently, however, I have been able to throttle a few thoughts about my personal experiences with dining-out into submission, and would like to share them with you.

    When it comes to eating a meal in a restaurant, be it fine dining, casual, or fast-food, I have been pondering on the importance of the proper attire. I knew that there had to be a connection between the choice of color, and style, of clothing worn to eat out, and that of the restaurant that becomes the selected place to dine. But the thought kept eluding me, I knew it was there, but it continued to dangle and swing seductively just beyond my grasp.

    Until, that is, the most recent time that I found myself having a meal in a restaurant. After looking at the carnage that I had left on the table, and the food that I had spilled on myself by the end of the meal, the thought finally edged close enough for me to grab. It finally dawned on me that I should be ordering my meal based completely, and solely on, the color of my clothing.

    An example of this kind of system would be, to only order, say, the Guacamole Burger when I am wearing a green shirt. This way I can walk out of the establishment with my head held high, and not resembling someone who has just spent a month engaged in a high-intensity food fight. Of course, I could just always wear neutral colored clothing when eating out but this would mean that I would have to stick to water, and spilling this in my lap may lead others to land on undesirable conclusions once I stand up to try to exit the building.

    Portion sizes, when this is an option, I have discovered to also be an important part, or consideration, when ordering a meal in a restaurant. If I am hungry, which just so happens to continue to occur quite regularly, then I find that I need to order enough so that food can be evenly distributed onto the table, floor, my clothing, and yet still provide enough to actually eat.

    Besides obvious reasons, like age, I wouldn't order a kid's meal if I was actually planning on getting anything to eat, (I do however wish that they would include a cool toy with the larger orders....this seems like a discrimination to me, but that's a subject for a later time). Sometimes I've wondered if it wouldn't simply be a whole lot easier to order an empty plate, sit in the booth for twenty minutes, tip the waiter, and go home. Or maybe one of Willy Wonka's sticks of gum that offer a full coarse meal.

    A close connection to the choice of the portion size, is the utensil selected. I will always choose the chopstick, as long as the chopstick is rounded at the end and can be used with one hand as a scoop, and.....well, pretty much resembles a spoon in every way. So, by this definition of the chopstick, I guess you could say that I always choose the spoon when given the option.

    I do this for several reasons, one of which is because the spoon permits me to carry a larger payload to my mouth, allowing at the same time for a certain percentage of food to fall off on it's journey. Also because the fork has sharp prongs that become potential W.O.M.D's, or, Weapons Of My Destruction with each bite that I attempt to take.

    I have also been known to fling fork fulls of food onto the floor, while attempting to cut it into mouth size portions. I apply so much pressure to cutting, that when the fork severs the piece that I am cutting, my hand doesn't stop and I launch the food into space. This would be a neat trick if it was intentional, like when someone throws food up in the air, and then catches it in their mouth. I could actually do this, if the object was to not catch the food in my mouth, but rather to hit myself in the eye, forehead, or throat.

    When this cutting-and-flinging occurs at home my dogs are the only ones who benefit. This phenomenon also manifests itself when I try to scoop ice cream, only this is known as the scoop-and-toss. It's kind of the Ataxia version of a game I played as a kid with little square beanbags called Toss Across.

    Eating is just one more of the areas that has been affected by the presence of Spinocerebellar Ataxia. But one in which, like everything else about this disease in my life, can be dealt with through a little creativity, imagination, humor, and a will not to give in or give up.

The Rabble-Rouser Who Would Be King.

here is a link to the audio version, in case you :would rather listen to this blog: www.youtube.com/watch?v=LoC31lYkTEg

    No one is quite sure where he came from, least of all me, but arrive he did. I have always suspected that before Ataxia came to live with me, that it's first thirty-eight years were spent on a remote island where only the crudest of men live, and the observance of societal norms or manners were non existent.

    Or maybe it grew up with a pathologically, psychologically, seriously-whacked out dictator. Or maybe it was a little of both. I don't even know what name "it" went by, before "it" came to live with me. I will probably never really know, but wherever the truth may lie doesn't really matter anymore. The "it" that I have been forced to live with, and am referring too now, has come to be known as SCA.

     However, lately I have come to refer to "it" as a "him". This is because in my last blog, giving him  his own persona is how I associated with my handicap. It struck me the other day that even the most vile of criminals and villains have names, and so it only seemed appropriate for my personal Neurological-thorn to have one too. And once that was decided, I really took the task seriously. I pondered, I paced, I meditated, I wanted a name that would perfectly sum up his persona in one simple phrase.

    I enumerated, struggled mentally, and reached for a perfect name...and then, three seconds later I landed on the name Brutus the Crippler, or The Crip for short. He really hates when I call him that, but it seemed fitting. The guy's an animal, a brute with absolutely no compassion.

    Of course, I would have rather given him a name that is meek and gentle, like Brian the Compassionate, or, Burt the Humble. I would even have settled for a feminine companion, like Grace, or, Faith. Seems to me that having an SCA with female characteristics might at least gain me a fraction of a chance that there would be an apology issued, as she joyfully, and without abandon pushed me down the stairs. As is the case right now, my only companion during the long and bumpy flight down is remorseless laughter.

    I also have a very strong feeling that The Crip didn't just happen upon me by chance. I think that he studied me before his actual physical arrival, and he strongly believed that I would be susceptible to his destructive ways. But this is where I believe that I can turn the tables on him.

     Because I don't think that Brutus was counting on the fact that I would, in turn, study him and discover that he has a predictable pattern. For example, what I have found to be the case is that the faster I try to do something, the harder that task will then become, and suddenly I will find myself engaged in a physical loop were I just keep quickly going through the same small motion.

    Everything from putting a key in a hole, to tying my shoes, to quickly sliding my feet into slippers so that I can go outside. I just keep missing the mark, and the more I try, and the more frustrated I get, the worse my overall attitude and outlook becomes. Brutus knows this, and his objective is to get me so worked-up and tired of trying that I will give up completely.

    He wants me to stay in the frenzied loop. But instead I choose to break the cycle, and his will, by stopping, taking a deep breath, refocusing, and trying again. Refocusing does not necessarily mean that my muscles will cooperate any better, and I may still have a difficult time, but I have let The Crip know that he is not the one in charge. He may want to be, and sometimes it may appear like he is getting closer to being the one who calls all the shots, but he is not.

    Ataxia comes at us in many different forms, with many different personalities. Some are big brutes, like my guy, and some are a little more subtle. Their goal, however, is a unified one; to make life miserable and to make us want to give up by throwing in the towel and wanting to quit.

    And to do that, every one of them (Ataxias) does the predictable by going after us physically. But I am here to remind you that in order for it to touch the Spirit....to take away your ability to love, your ability to show compassion, and to allow the feeling of joy to spread from you and to others...it first needs your permission. Ataxia does not respect you, nor does it need your ascent to take away the physical. However, it does need your permission to steal, redefine and reshape who you really are.

And I, for one, am not going to be giving the Rabble-Rouser Brutus permission, and my deep desire for you, my friends, is that you will not be giving yours permission either!

Hey, I just wanted to pop in and say, "Hi".

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.

Well, That Certainly Would Be Helpful.

here is a link to the audio version, in case you :would rather listen to this blog: https://youtu.be/WCZn-m9paqo

It has become very inspiring for me to know, by either talking with some of you, or by reading your posts on numerous Facebook sites, that a lot of you are able to maintain such a positive, and healthy outlook on your life. Despite the challenges that a Neurological disease can bring, many of you refuse to let it dampen who you really are. This motivates me, and serves as a constant source of encouragement for me. If I could have one wish come true it would be that I might be able to visit with each of you, and share with you what you do for me on a daily basis. To all of you who seem to, like me, find yourself constantly quarreling with your body because of a physical condition or disease, I would like to say thank-you for all of your support, friendship, and encouragement. I dedicate this blog to you, and trust that, since there are too many to name, that you will know who you are. Unfortunately though, this kind of positive outlook, and spirit, does not pertain to everyone. Some of the people that I have come into contact with seem to be in a place where they refuse to see anything in a positive light, as if their happiness can only be found within a constant shroud of misery and negativity. My heart goes out to people like this, because they are missing out on so much. I have learned in the past, and continue to remind myself in the present, that I have accepted my SCA, and that nothing will be changed, or gained, by a constant refusal to allow myself to be happy despite life's difficulties.

With that being said, however, there are a few tiny things that would make life a little more pleasant. I hesitate to even mention them, because they are so small. And really, they are such minute things that I can't imagine that they would be a bother to anyone. I will go ahead and mention them, though, and you will see how small and trivial they are......

Just a little bit......

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. The title of Cursive is just sitting there! Up on the shelf, no longer being used, and gathering dust so why can't we reassign it to the area of speech. That way I could be bilingual, as Ataxia already seems to come equipped with this ability. I always wanted to speak another language, but I was never really gifted at learning in this area, that and the fact that I was lazy, never wanted to study, and because pointing and grunting were already universally understood. But I'm sure that you know what I mean, some people just seem to be naturals at learning, and picking up a second, third, or fourth language appears to be effortless. There was a day when I wanted to be one of these people, and in my quest to be multi-lingual and a international man of the world, I signed up for German my sophomore year of College. The class was at eight o'clock in the morning, and I'm not sure what possessed me to do this, because I struggled to speak understandable English that early. Anyway, I don't see that adding another speech pattern to the list of recognized world languages to be a big deal. 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.

I was thinking that a Hobbit-style dwelling might make for a nice one-level home.....until I realized that this would involve bending down and crawling.....I'll leave that for the kids.

I would also find it immensely helpful if my SCA would put just a little more effort into working with me. I mean, really, how hard could this be? It seems like such a small request to me. It's already there, re-shaping my Cerebellum and adding a bunch of weird side effects. It seems to me that it would be a small thing if it could throw in a helpful symptom once in awhile. It would be rather nice when I am explaining my SCA's conditions to people to be able to throw in a positive side effect. I could say something like, "along with poor balance and motor skills, my disease includes a ravenous-appetite that defies all logic, which also comes coupled with the inability to gain weight, or any other adverse side effects to food consumption, and this borders on nothing short of euphoric." I think that it would be a little bit of a boost to Ataxia's reputation as a bully if it would just allow itself to be presented as an Ala Carte Disease. If we could pick and choose from a menu of physical affects that were, say, put in a more positive light. Again, back to the weight-gain, (because it is a big issue for me...get it?). I have struggled all my life, or at least for the last fifty-odd years, with gaining a few extra pounds while at the same time having a sweet tooth. If I could have seen on a menu the ability to eat with some difficulty but never gain weight I would have ordered it. Probably even would have ordered it well-done, I don't know... maybe medium-rare.  I would like to refer to this system not as a disability-menu, but instead as a thisability-menu. Because all side effects would come with a positive ability.

I guess it is all just in how you look at it. I am always on the lookout for small things, the seemingly insignificant common items that will help me see my world in a different light,  or a different way.

This Or That, Either Way I Benefit.

here is a link to the audio version, in case you :would rather listen to this blog: www.youtube.com/watch?v=jXnzSwoAe9k

Before this blog begins I would like to point out that I have added a new feature to my blog page. On the right side, at the top, is a link to translate my writing into another language. I don't know how necessary this is, but thought it was a really nice feature to offer to my readers.  Sorry, it will not improve my writing or make it funnier.....

And now.....

When our kids were little, Melissa and I lived on a eighty-acre Christmas tree farm that is located about fifteen miles from where I currently live. At this residence we had three or four rose bushes planted in front of our deck. Interspersed through out these were miniature wild roses that I had discovered growing in a field beside our home. I dug up some shoots off the main root system, leaving this main system intact, and transplanted these off-shoots to my yard were they did very well. They bloomed with a very pretty, nickle-sized red flower. The native rose bushes were the common variety and put out baseball-size yellow and red blooms. All this beautiful growth was separate from, and in-spite of, any effort on my part. Why do I mention this? Has this blog now become a writing about gardening? Believe me, you DO not want to take any kind of gardening advice from me. I can't even get Moss to grow successfully. Now, at this point, you might be tempted to say something like, "Jason, you must be exaggerating, how hard could it be to grow Moss?" I wish I were only making this up, but no, I'm not...and sadly, it's a true story. A very true story. Melissa and I thought that a nice alternative to grass in our backyard might be some decorative Moss. So, we proceeded to go to a highly respected garden store and purchased three healthy Moss plants. We brought them home, planted them, and gave them plenty of water. And then? Yep, they died. All three of them. They didn't even APPEAR to have put any effort into living. I mean if they just would have given us something....new shoots, would have stayed at least half green...something! No, they just unceremoniously died. Pretty sad when you can't even grow Moss on purpose, especially when you turn around and see robust, and thriving forms of it growing elsewhere in the yard, all of which are native. I guess, in my case, the Moss didn't want to be enslaved by civilization, but instead wanted to retain it's wild, and care-free lifestyle. Anyway, I got off subject. I said all that so that I can tell you the next part of the rose story, because that was the part that I really wanted to tell you about. So, what happened next was that the wild rose, and the domesticated rose co-mingled and made a hybrid rose like I had never seen before or that I have not seen since. I'm almost positive that the introduction of the new species of rose, that I had inadvertently grown, would have made a rather large splash in the world of Botany. If only I would have taken the time, but I didn't, and those roses are gone now. To this day I think of that hybrid rose from years ago and wish I wouldn't have let that opportunity slip by me so easily. And that is exactly why I will not let this next situation slip by me without mentioning it.

Before my very eyes there is an outside form of Ataxia that is co-mingling with my current Spinocerebellar Ataxia, and is forming a unique variety. The only problem that I am facing right now is that I have two different names for this current phenomenon, and a vastly different definition to go along with each individual name. I will, however,proceed to spell them out for you and let you be the ones to decide. The first new breed of Ataxia is what I refer to as Sympathy-Ataxia. This form of Ataxia works in much the same way as the sympathy pains that I had for my wife each time that she was pregnant with our three children. I distinctly remember that with our first child, I was working at a Retirement Center as the Lead Cook/Assistant Manager. Melissa was about eight and a half months pregnant, and I was on one of my breaks at work. I accidentally spilled my cup of water, to which I immediately shouted, "My water just broke!" I then began to experience stomach cramps. I also remember having weird cravings for obscure food combinations, although that one couldn't technically be described as sympathy pains, as Melissa never really had any of these off-the-wall food cravings. That, and because our youngest child is eighteen, about to enter College, and my weird food cravings are still with me.

I don't know whether or not it is sympathy towards my Ataxia or not, but I have begun to take notice of the fact that my wife and daughters are beginning to exhibit signs of having trouble. They have started to drop things, and spill food and drink on themselves while eating. At first I was tempted to think that they were doing this as a way of showing me what I look like when I eat. This was funny to me, and I was going to reply that I appreciated the humor, but I was aware of what I looked like. Then, as the frequency of these things kept happening to them, I realized that they were not just clowning around, but that all the fumble-age, drop-age, and spill-age were real. This could be chalked up to sympathy, or it could be explained by the second name, a condition that I have come to refer to as Osmosis Ataxia.

Through the years that Melissa and I have been married, we have absorbed some of each other's traits, habits, and sense of humor, humor that is defined as having trace amounts of observation, irony, a sense of the physical prat fall, added to a large amount of quick-witted sarcasm. We also quite often know what the other is thinking, or what the other will say in a wide range of situations. Melissa has got me pegged a little better in this department. Although, I have to say that I have made it easier for her by repeating the same stupid quips, jokes, and comments over the years. Repeating myself is more than likely a product of my faulty short-term memory. I can't really recall, but I think I may have recently written a blog about that. You should definitely feel free to go back and re-read the blog to check and see if I am remembering correctly. So, back to osmosis, is this what is happening? Does my SCA have an element of life-by-example? Does Ataxia have an affect like secondhand cigarette smoke? Traits that can be adsorbed by others'? I still am not sure which definition is the correct one, sympathy or osmosis. Which one do you think is more likely?

Regardless of which one it is though, there is a large benefit that has come to my life because of my current Neurological situation. Hand-holding. Lot's of hand-holding, and other physical contact. This realization came to me the other day when my youngest daughter, my wife, and myself took a trip for the day to the beach. All day long, Melissa was there to hold my hand and safely guide me. And whenever she wasn't, my daughter was, who did not hesitate to hold my hand and help me down a small staircase, or step of a curb without the face-plant finishing move. There were a few times when we were on a narrow path and had to proceed in a single file. Melissa would be in front, reaching back and taking my hand, and Jessica would be behind me, reaching forward to steady me. I was very thankful, and it reminded me again that I cannot possibly do this alone.

I urge you to reach out. To let someone take your hand and guide you. Let someone show you the way to safety.....

.......then they can be assimilated through sympathy or osmosis!:-)

It may look like I am leaning on the tractor for support....but I wanted it to appear this way, and in reality I am keeping the tractor from toppling over! This used to be my summer job, and I don't want to brag....but yeah, I was pretty good.

Uh, Yeah....I'm Gonna Need You To Repeat That.

here is a link to the audio version, in case you :would rather listen to this blog: www.youtube.com/watch?v=9KQ1vIMzPDA

Over the course of history, man's intrinsic gift to effectively listen has come to be known by several different definitions. Some have come to label the ability to hear as, "selective-hearing". Others' have defined it as, "having too much wax in your ears". Both of these highly technical definitions work in my case, but I would also like to add a third possibility, what I have come to refer to as, "slurred-hearing".  As of this current writing, my speech has not been greatly affected. But how would you really know if that's true, since your reading my words and not listening to them? You will just have to trust me and take my word-for-it, or in this case, my write-for-it. By slurred-hearing, I mean that one of the current affects of my SCA that has developed over the last several years is my inability to hear myself correctly. More specifically, my body's lack of ability to hear internal mandates clearly. Random shuffling of the feet is often caused because of this occasional slurring. A constant string of orders to the legs to pick up the feet during the engagement of walking will in general be heard correctly, until suddenly, when the legs' hearing process will become slurred, and they will hear something along the lines of, "Okay, listen up! Because as of this moment we are going ice skating people, so start skimming the ground like you mean it." Sometimes the best way to keep them out of trouble is to just find a nice bench and give them some time off for behavior, (sometimes it's good, sometimes it's bad).

All three of the former definitions can be assigned to me, but not every one of those definitions can be accurately applied to every member of my body. Do I really think that my legs might have wax in their ears? No, probably not, BUT I do think that they, besides their slurred-hearing, have also exhibited from time to time some very selective hearing. I clearly will give them a direct order that has come straight out of headquarters, and they will ignore it. Of course, they think that I don't notice, and that they are getting away with this, as they whistle and attempt to nonchalantly walk away. But the headquarters have eyes and are always watching. Except at night that is, when the office closes and everyone goes home for six or seven hours. But, again, because they were selectively-listening, and didn't hear the end of the day call, occasionally the legs will attempt a breakout during these quiet times by making a sudden and violent move, I guess towards what they perceive to be freedom. This usually sets off a painful proximity alarm and wakes everyone in the system up. Searchlights snap on and begin crisscrossing the ground like there has been a seriously massive breach in the containment system and all escaped members need to be found, and found quickly. The headquarters instantly becomes a flourish of confused activity, as everyone involved is trying to shake the cobwebs out of their own headquarters, and to resolve the crises as quickly as possible so that the main office can be closed again. No matter how quickly this may happen, though, the damage has already been done, and although the lights at the main office have been turned off again, and everyone has returned to their homes, all does not return to the peaceful quiet of before. There will usually be a mouse, a random thought, or a situation that is currently happening at the executive level, that will choose this time to begin running and bouncing around, successfully keeping the headquarters abuzz with activity. All because of that darn selective hearing.

My legs may not have wax in their ears, but my ears apparently get wax in THEIR ears now and again. I don't know how else I can explain why my hands don't always seem to respond well to my ceaselessly-positive self-talk. This would seem to be the explanation, as the only middle-man between the sound coming out of my mouth, and my hands, are the ears where the sound enters back into the system, and then travels to the intended appendages. The wax in my ears will effectively stop the forward progression of any verbal commands. However, sometimes this backfires, sometimes the commands are internally stored there until a successful un-blockage can be accomplished, usually by way of the Q-tip. The saved message will then surge quickly through the system, causing the hands to fly up in what appears to be a sudden random and completely unprovoked manner. If this happens to you, as it does to me, all I can say is that the observation of this phenomenon by others, and their interpretation of this event, will greatly depend on the location that you are in when this whole thing goes down. Of course, it does seem odd to me that anyone would choose to clean their ears anywhere other than the bathroom, but hey, I am not here to judge, and you just go right ahead and clean where you gotta clean!

I am standing for your right to free clean, er...I mean free speech.

So, at this point I have established that the act of "hearing" myself is more or less a hit-and-miss proposition, a process that I am still working on. Now I would like to move on to a related topic, one that for me has come to be known as,"what?' For most people, this would be more commonly known as active-listening.  I try, I really do try, but between the faulty short-term memory that I admitted having in my last blog, the selective-hearing, earwax, and the slurring when I hear, I don't stand a chance! That doesn't mean that I don't keep trying though! This means that not only do I have to hear what I am trying to tell myself, but I have to act on that information. I have learned this the hard way and want my experience to save you from potentially making the same mistake. If I approach uneven ground, then a voice of reason tells me that I should not attempt to walk there. If I don't immediately stop, but hesitate to act, and say, "what?", then I am probably already taking a step ahead. This usually never ends well, and this could have been avoided by actively listening to myself.  Do you see what I mean? Were you even listening? What?

Short-Offering Buffet

here is a link to the audio version, in case you would rather listen to this blog:
www.youtube.com/watch?v=4NwwIS9r6fk


Besides possibly being a really cool name for a band, Short-Offering Buffet is just another way to say leftover night. This is a direct reference to a past blog, number 43, which was titled Leftovers, No Matter How They're Reheated. It is time again to clean out my fridge, and offer to you the bits and pieces that have been gathering dust in my mind. Hopefully you will find something here that you will like (but if not we always have frozen pizza available).

1. Losing My, Uh....?Dealing With A loss Of My, Uh...?Oh, You Get The Point!

At a tender, and yet slightly riddled and marbled with fat, age of fifty I am now mature enough to admit that I have never had what most people would refer to as a impressively-commanding handle on short term memory. Oh sure, I can easily remember all the lyrics to songs and the band members that played, and sang  those popular hits when I was just a kid. But ask me what I had for dinner last night? Uhhhhhh..... give me a minute.... Oh shoot,I should know this one.... (five minutes later, and after consulting with wife)..... Oh yeah, now I remember! And then she reminds me that I was the one who made the dinner.  See what I mean? Not very impressive. But this pales in comparison to the short term memory that my body seems to have lately. I was thinking about this in the shower this morning when my legs started to wobble the moment my eyes were closed so that I could rinse my hair out. And I distinctly remember thinking,  " Really guys? Really? We just went through this exact routine yesterday!" (Side note: You may be tempted to be impressed by my power of recall and memory of the events in the shower, but remember, they happened merely minutes before I wrote this. In fact, I thought of this whole memory idea while taking a shower, and basically had to write it down as soon as I was dry, lest I forget. I'm serious, don't laugh, if I would have waited until I was completely done, I would have probably remembered that I had been thinking about SOMETHING a few moments ago. Then I would have convinced myself that I had been thinking about possible flooring options for our house. Hey, I've done it before). Anyway, my point is that lately my body is seeming to have lapses in recall. My fingers will, on one day, remember how to tie a shoe or to grip a fork. But the next day? It feels a lot like it is the first time all over again. The seventies hit, "Feels Like The First Time", by Foreigner could become my new Ataxian theme song.

2. It All Comes A'Tumblin Down.

If I could have gotten a head's up, or even received a clue, when I was three or four that one day I would have Ataxia, I could have begun laying the ground work for a spectacular pay-off later. Just imagine with me for a moment, I could have talked my father into letting me use his five acres of land. Every week I could have set up ten thousand Dominoes, in anticipation for the day that I would stumble into them and set a world record. I mean, ten thousand a week? Until I was thirty-eight? That's....uh, let's see... there are forty-eight weeks in a year, sixteen tablespoons in a cup...uh....well, it's a lot, and I would have been a champion Domino-type person, (or whatever you call a person whose major achievement was setting up Dominoes all his life). Of course, had I actually done this, I would have needed a clean-up crew to pick up all the fallen tiles. I set it all up pre-ataxia and can't be expected to do all the clean up post-ataxia, as I can't really bend over and pick up small things without doing a nose dive, or packing a suitcase in anticipation of an extended trip. Besides, I did the hard part by stumbling into the stack and getting the ball rolling, or Dominoes toppling, as it were. But, as close to reality as that little musing is... it didn't happen. It could have, but....it didn't. However, in the present I DO think of Dominoes every time I reach into a cupboard, attempt to put something away, or reach into the refrigerator. I am not making this up when I say that sometimes, what should have taken me seconds, now takes me minutes because of all the things that tumble out of the cupboard or that fall off of the counter when I reach for something else. When our kids were small, Melissa and I had built up a rather large collection of plastic cups, because plastic is very kid friendly, as opposed to glass. We still have some of those cups, and I am glad that we do, because I've discovered that these are also Ataxia-friendly. Just think of what would happen if Dominoes were glass. They would literally be one-use toys. Thanks to the spectacular invention that plastic cups are, the Domino-style action continues.

3. And Speaking Of Perspective.....

One of my goals throughout the day is to have the appearance of control, (by the way, I believe that the perspective we may have of ourselves to be a natural part of the goals that we set for ourselves, and this current writing is meant to be a direct extension of my last blog, concerning goals). When out in public, and it appears as if I am intoxicated, I would rather people imagine that there may be another reason for my unsteady gait, rather than one of alcohol. Something simple, say, like that I am really only practicing at being publicly intoxicated because I landed a part in the local theater as the town drunk and I really want to nail it. Although, that seems to be rather specific, and I can't imagine where they would have gotten that idea in the first place. There's got to be an obvious answer, like maybe I told them, or something simple like that. I don't really recall, I have bad short-term memory, remember? Maybe you don't, I don't know, but the point is that the perspective you have of yourself cannot be based on other people's preconceived notions. I am not referring to family, friends, and loved ones who can speak positively into our lives. We need to be an encouragement for each other, and speak truth into each others' lives. The support of others' can be very helpful, and in a lot of ways, make all the difference. What I am saying is that the perspectives, or the false conclusions that people jump to that do not know or understand the handicap that affects us, are usually NOT helpful. These can hurt, or cause frustration and anger, which is what typically happens.  Our perspective needs to be based on who we are, and our daily goals need to reflect this. It is like I stated in my former blog, that I believe we need to accept our limitations, give ourselves permission to be who we are within our disability, and to set realistic goals for ourselves that are based on an accurate perspective of who we are. Having a positive perspective, rather than a negative one, is possible within this disease.

Ataxia, just like other handicaps or circumstances in life, is a matter of perspective.

4. Peeking  Through The Willows.

Now that I have shared with you my thoughts on goals, and perspective, I would like to move on to a subject that I call Peeking Through The Willows. As a person who found himself suddenly staring into the reality of a diagnosis of Spinocerebellar Ataxia, like many of you, I felt alone and now somewhat separated. But also like many of you, I discovered after a time that this was not a true perspective. The truth was that there was a support group that I could join. There were thousands of people world-wide that I could reach out to through social media, and connect with. They were from all walks of life, at different places and stages as they dealt with their handicap, and they brought much needed understanding, friendship, and support into my life. They began to teach me by the examples in their own lives what it was to live moment-by-moment with a handicap. Why do I call this Peeking Through The Willows? It is because I strongly believe that, as we peek into other peoples' lives, we can find the strength within our own handicap to maintain a positive perspective of who we are, and to set correct and helpful goals for ourselves.

Well my friends, I truly hope that there was something presented here that you found palatable. I am sending all of you thoughts of strength, and pray that you have a great day!

A Goal To Reach My Daily Goals.

here is a link to the audio version, in case you would rather listen to this blog:https://youtu.be/lAD_BeV_4Gc
In my constant, and unwavering negotiations with Ataxia, I find that if I set a list of daily goals for myself that these are what help me get through the day successfully. Of course it would make it much more effortless to reach my daily goals, and believe me I am sorely tempted, to just simply not have any. This way I would always be victorious, and never have to worry about letting myself down. Another word for this type of goal-setting would be lazy. I do, however, find that I have those days when doing as little as possible because of fatigue, or because the risk of injury to myself if I push it is a fraction higher than my usual plateau. Even though I try to limit these times, during these days I still have to eat, breathe, and try to walk on the razor's edge to the bathroom, so the elements of risk and the possibilities of injury are always present. And so with this in mind, I continue to set short-range goals that take me in small but safe steps, (fingers crossed) , through the day. I will share them with you in the event that, you know, if someone out there IS struggling with the concept of setting goals for themselves, that the ones I have set for myself might serve as an inspiration.

Nothing helps me to attain a better nights sleep, nor that infuses a sense of well-being, and accomplishment when I lay my weary body down at night, like the feeling of knowing that I have managed to reach all the goals that I have set for myself that day. In fact just the act of laying down is the realization of one of those goals. It is the last, and the most important, goal of the day. If I cannot achieve any other goal during the day, just having a nightly reunion with my bed is enough. But I continue to strive, and to do my best, to achieve the positive agenda that I have set for myself.

I start the day off, in a very similar fashion I suspect that most of you do, by waking up. Right away I start my day off on a positive note, as I have already accomplished the first goal that I have set for myself. Although, there are some variables in the attaining of this goal, as I never know for sure what state I'll wake up in. I don't mean State with a capital S, (I am not a member of a traveling circus, nor am I some kind of vagabond), but I mean state with a small s, or relating to my waking physical condition. I guess to simplify this particular goal, and so as to not base it on a wide range of fluctuations, the accomplishment of the goal of waking up should rather be based on the simple fact of whether or not I'm still breathing.

So, up to the current date, I have successfully nailed the first goal by simply opening my eyes, and from there I move on to the second goal...coffee. It really is as easy as that. It is a simple thing, but one that I can not over-stress the importance of. I stumble out to the kitchen and either I or Melissa will fill our large travel mugs. This goal is actually two-part, with the first part being completed the night before, and which plays a integral part in the successful achievement of the second part, which is the setting of the automatic timer on the coffee pot. This insures that the coffee will be ready and waiting. We use the buddy-system here to try and minimize the potential for true disaster. In the morning we also trade off filling our cups, as we both have a need to enjoy as much coffee as we can get into our systems' without actually drowning ourselves. Once this second goal is achieved I then advance to the third goal, which I just previously touched on. The triumphant avoidance of an accidental drowning by highly-caffeinated hot water. This is a very important goal to me and I seek to fulfill it while being engaged in the midst of goal number four. My easy chair. Oh yes, my easy chair, or as I will refer to it here, the horizontal-slumber mate. I spend a lot of time in the reclined position, studying the back of my eyelids as if I am trying to find some ancient writing or the charcoal pictures of a buffalo hunt etched there. I haven't found any yet, but I promise you my friends that I will not rest (did you SEE that one coming?) until I do. At this point in the morning, however, I do not avail myself of the horizontal-slumber mate's reclining charms, rather the highly seductive sprawled-back position serves as a precursor to a successful re-entry into bed at the end of the day.

About six months ago a lady from one of the support groups that I lead called me. She was very overwhelmed and distressed to the point of tears. She was looking around her house and seeing all the household chores that in the past had come so easy for her, but that were now a struggle. She compared what she used to be able to do and accomplish during the day with the reality of what she is currently able to do, and the thought was very frustrating and depressing. On top of this, her body was now reacting to the stress by shutting down. Most of us can relate to these feelings from time to time, as many of us have found ourselves in that dark spot. I know I have, which is the first thing that I told her. I also told her that it is a place that I have not allowed myself to stay in, and I strongly urged her also, to not allow herself to dwell there for very long.

How does this relate to the setting of daily goals? Because the friend that I just mentioned was not only comparing the past to the present, but was looking at her day as one large task, and because she was allowing herself to do so, was feeling completely overwhelmed, and was left to wonder how she would get it all done with a body that was becoming ever-increasingly uncooperative. I told her to pick just one or two things that needed to be done, and if that is all she could do, she needed to be okay with stopping there and resting. She needed to stop focusing on what she didn't get done, but on what she DID get accomplished, and to just let the other things go until tomorrow when she could go at them again with a fresh start. I told her that what I have found to be true in my own life is that a positive daily attitude starts when I am able to give myself permission to be me. Note here, that I did not say Ataxia is an excuse to take life easy, but I believe that we have to give ourselves permission to be who we are. I told her that it is a day-by-day situation as we learn to work with, and around our Ataxia. WE do have a handicap, and because of this fact, the everyday tasks, and things of life that come easy for others', and that used to come easier for us, are now a challenge. So, we have to set realistic goals for ourselves and stick to them. We have to be okay with taking smaller steps. You may not like it, but I very strongly believe that you will not be happy until you give yourself permission to understand your limitations, to engage them head-on, and to find ways to work with them, around those them, and despite them.

She knew these things, and just simply needed someone to shine a light into her pit of gloom, to reach a hand down, and to help her climb out. We all need this at times in this life, and is why support is so important, my friends. Because in those moments we need to know that we are not alone in our struggle.

Beyond my morning coffee lies a day that I could completely fill up with a seemingly endless list of chores, tasks, and responsibilities. I have made it one of my daily goals to just simply do a few things everyday, and I find that by the end of the week I have been able to accomplish just about everything. Everyone of us is different in how we may choose to handle our situation, but with MY daily Ataxian shadow, seeing and handling household chores in small chunks is a goal-system that works well for me. AND...it makes the reunion with my bed every night that much sweeter.

Wham, Kablam, And Kerslam!

here is a link to the audio version, in case you would rather listen to this blog:https://youtu.be/hnQw71fHidU

Life with Ataxia, for me, can often seem to be a life lived in the middle of an anything-goes, let's-pick-on-the-little-guy, free-for-all, target practice....just like the ones that I experienced during my childhood. It was not uncommon to find myself being bombarded by pine-cones, water balloons, rocks, little green apples, handfuls of berries, dirt clods, dried cow pies, rubber bands, dirty underwear, golf balls, or shoes. A time when any one of these items, a combination of these, or any other fly-worthy object, would approach my innocent self at a high velocity (for I had done NOTHING to provoke this kind of response). I would just be walking along, COMPLETELY minding my own business, not bothering anyone, when suddenly wham! Something would fly out of the blue and dramatically collide with my person, often in a very painful way. Usually I would know better than to return fire because the outcome of trying to retaliate would only cause the rain of terror to increase in speed, volume, and accuracy. I spent a lot of time in my childhood playing Bob-n-Weave. It was not a game I found to be enjoyable. I even had a pitchfork thrown at me once, (read Once, I Was A Child, blog number 31, for the whole story).

I compare my life with Ataxia like to a game of Bob-n-Weave because there are times when I can see myself, placed right back in my younger days, with foreign objects flying at me from every which-way, seemingly from out of the blue. Only, now the items are not things from my childhood, like dodge-balls, or dirt-clods. These were objects that were thrown at me by someone else. Never once were my injuries from air-born foreign objects self-inflicted, nor do I remember ever being tempted for them to be. And even though I may not be tempted now.....no, let me rephrase that, I am definitely not tempted in any way, but my body apparently has different ideas. I might be sleeping peacefully, when out of nowhere, wham! A kamikaze leg cramp will decide that it is zero hour, and time to strike. I might be drinking my morning coffee, and suddenly, just like that, kablam! My throat decides to close up shop, puts up the sign that reads, "Be Back In Ten Minutes", and goes on a break. I know my throat doesn't smoke, so maybe it went to take a coffee break? Wouldn't THAT be ironic. Or, I might be walking on flat ground, when my legs will just decide that they have had enough of my feet, always having to lift them up. "We're tired of always being the ones to carry their weight, why can't they take care of themselves for a while?" (By the way, this really is how my legs talk, I heard them once....it was the same day I heard my money say goodbye). Anyway, because the legs do this, the feet will be left on their own to move, and since they can't pull themselves up by their own bootstraps, they are left to inch along the ground. The point being that, kerslam! I find myself shuffling, lurching, and finally falling.

Sometimes the current game of Ataxian Bob-n-weave reminds me of a time in College when a few friends and I found ourselves in a faculty member's garage. Don't worry, there was nothing nefarious going on. One of the guys that I was hanging out with that day was dating a girl whose parents lived in the house that we were messing around in. We actually spent a lot of time there, eating their food, and watching their television. They were like second parents to me and didn't mind us hanging out there at all. Fact was they encouraged us, as was evidenced by their frequent question of,  "Why do you guys always want to come here?". See what I mean? They wanted us there. So anyway, back to the story, one day a few of us found ourselves in their garage. One guy finds a loaded air rifle, pumps it ten or eleven times, and fires it at a metal shelf. At this point, you need to know that the kid that shot the gun was currently a 4.0 student and at College on a scholarship. Well, the rest of us quickly went into the universal Bob-n-weave stance, because the speeding BB had now ricocheted off the metal cabinet and was bouncing around, and none of us wanted to get hit, (apparently they all knew the game of Bob-n Weave too...they must have played as kids, also). We were in a single car garage so there really wasn't many places to hide. After the initial shock wore off, (two to three seconds), we laughed, decided it was fun, and did it again. It was either this, or do some homework, so....

I say that my present condition reminds me of that stupid kid back in that single car garage. It reminds me because.....well.....because that WAS me, and because not only do I still do a version of the Ol' Bob-n-weave, but I can now empathize with the BB that was spit out of the barrel of that gun, only to smack into a hard-metal shelf, and then to spend the rest of it's short travels bouncing, and pinging off other surfaces. The BB that never got to be a part of the decision making process concerning it's movements, (I would tell people that I have B-B-Ataxia, but then it would sound like I am stuttering). Whenever I stumble, and can't seem to stop the forward motion because there seems to be an unseen force of air pushing me, I see my old friend from College days, as he gleefully and methodically pumps that air rifle.

Another story from my childhood that reminds me of my current situation happened when I was somewhere around the age of four or five, and my two older brothers would have been eight and nine. I don't really remember where we were going to go as a family, but Mom had dressed us three boys in matching sailor's suits. She had gone to great lengths to clean us all up and dress us in the white outfits. All she asked of my brothers and I was that we stay clean while she finished getting ready, and we waited for my Dad to get home. So we promptly headed innocently outside to play, where an argument quickly ensued between my brothers. Things quickly escalated to the oldest brother throwing dried, (and some not so dried) , cow-pies at the other brother, who was returning throw-for-throw with dirt-clods. I somehow ended up on the brother's side who was getting hit with cow-dung, and even though I had a wood pole to stand behind for protection, managed to get hit numerous times. We were a complete mess by the time the fight was over. My brothers then decided, that since I was the youngest and couldn't resist their combined force of will, that I should be the one to calmly explain what happened to our Mom. I do remember walking into the house, seeing the look of sheer, unbridled delight in my Mom's face, and saying, "Bob and Jon did it."Beyond that I truly don't recall anymore details. Major trauma at that point may have something to do with this. I just can't imagine that my Dad was very pleased when he came home and Mom told him what his three darling little boys' latest adventure had brought about.

I relate this story to my Ataxia, in much the same way as I do the story of the Air Rifle. Things get thrown at me, and even though I may be an innocent bystander, Ataxia is always there to inflict it's force of will on me. BUT like I have said before, AND will say again...Ataxia does not dictate who I am, what I think, touch or dampen my Spirit. These are just snapshots of memories from a past that made me who I am today. I will never hand my disability the victory. I will never surrender. Ataxia may win a few battles, but will never win the war. Be strong, my friends.