Friday, October 16, 2015

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.

Sunday, October 4, 2015

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".