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There have been times when I will get the sudden impression that I can run, or at least jog slowly. I used to be a runner, it shouldn't be too hard, my leg muscles should remember this and know what to do, right? Uh, yeah, they're like, "What's this thing called.....running? Nope, sorry, don't believe we've ever heard of it before or ever had the pleasure."
I suppose it is a good thing that I never aspired to run off with the circus as a kid, although I probably could have had a lucrative career as Clumsy The Clown, where everything I try ends up in an epic comedic disaster.
For example, is it so crazy to want to simply get out of bed at three a.m. to check the plumbing in the bathroom without the drama of shaky legs, and feeling like I am trying to stay on my feet in a ninety-mile an hour cross wind?
Apparently, there is a smaller office behind the main mind's office that is a control room of sorts. The way it was explained to me is that the job of this little office is to translate orders from the main office, and then to send them out as mandates to the other departments. The problem that has developed is that the person in charge of the little office and ensuring that it runs smoothly has become unstable and highly unreliable. He calls in sick half the time, and when he does show up....well, he's not all there if you know what I mean. The lights are on but nobody's home. And I can't fire him. Believe me, I've looked into it but he 's got some kind of iron-clad contract. I don't know, it all seems like internal politics to me.
I never received any external summons, but thirteen years ago at the age of thirty-eight, I did accept delivery of an internal call to a version of Mission Impossible, named Ataxia Impossible. Actually, I didn't so much as accept the delivery as I had it thrust upon me, and over these last few years, it has been like watching a movie.
Cords are another thing that I have issues with. If they are not jumping up off the floor to try and trip me as I am walking by, or stepping over them, they are forever wrapping themselves around my ankles. I really don't understand their problem because I treat them nicely. I never harshly yank them out of the wall sockets or use them for a quick pick-up game of jump rope.
The Venetian Stairs.- Stairways everywhere, in every part of the world, would be required to be fitted to have this capability. The idea would be that every stairway would have a rod at the top and one at the bottom that could be accessed by a handicapped person and twisted so that the stairs would fold flat, like window shades, and become a ramp. Not a bad idea, huh? There should be an official watch group set up to go around and identify all the public hazards that are caused by stairs. Maybe I should form a group, named, Be Aware, Don't Forget Ataxians Living Life, or B.A.D. F.A.L.L. for short.
I know now that food packaging which claims to be, "easy-seal", is lying. It is most definitely not truth in advertising.... at least for me it isn't. I will waste somewhere between two minutes and a entire month just trying to get the two sides of the bag to line up and....interlock, mesh, grab a hold of each other and form a bond....to do something, ANYTHING that will resemble that the two so-called self-sealing sides are working together as a team!
.....a-not-so-distant time when I could walk straight without appearing as if I were trying out for a position on the latest dance-related reality show or to be an extra in an earthquake disaster movie. A time when I could chew and swallow without the need to update my Life Insurance Policy beforehand, when I could descend stairs or step off a curb without the need to first anchor a repelling rope, prior to my descent down the four or five-inch sheer cement wall. And, yes, even a time when I could mix myself a simple tuna spread for lunch without first having the need to rent a small cement mixer to contain the mess made by mixing a 4 ounce can of fish with mayonnaise. There were so many simple things that I did in my life that I never had to think about, or that I ever needed to stop and contemplate beforehand.
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.)
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.
.....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.
.....there is a large benefit that has come into my life because of my current Neurological situation. Hand-holding. Lot's of hand-holding, and other forms of physical contact.
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.
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.
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.
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.
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 vilest 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.
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 resemble someone who has just spent a month engaged in a high-intensity food fight.
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 an epic temper tantrum on the other.
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.
I am finding that there seems to be a connection between my diagnosis of SCA and my struggled attempts to find any kind of synchronized rhythms or patterns. The mere act of bringing my two hands together more than twice in a coordinated clap is proving to be a real challenge. Often it appears more to be the swatting away of imaginary spider webs.
....at a party, I wouldn't introduce the obvious elephant in the room as,"a close and personal friend of mine". He showed up at my door one day, (Ataxia), thirteen years ago.....just like that, not even a phone call, a text, a letter, a fax, a tweet, or even a smoke signal first to announce his impending arrival, and decided that he liked it so much here that he has no plans to ever leave my side......lucky me".
I even use more effort than necessary when sliding the shower curtain closed. If it was possible to make a loud crashing sound when a plastic shower curtain was being closed, then I would most definitely be the one to make it happen! Luckily for me, my shower curtain doesn't shatter like glass, or we might be having a different conversation right now, probably something along the lines of being more.....uh, medical in nature, if you follow me.
I have considered before trying to sell him at a yard sale....but even with a drastically reduced price (in which I don't come close to breaking even but actually losing money), I'd still wind up being stuck with him for the remainder of this life. Even a good ol'fashioned unsuspecting buyer wouldn't be able to see themselves owning an SCA.
Do you think that if I requested The Police's Don't Stand So Close To Me, that Ataxia would get the idea that I need some personal space?
I walk around my house all day feeling like I am trapped within a giant Pinball venue, and all that is missing is the large scoreboard that tallies the growing score, with the sound of the constant beeps and whistles.
Either one type of day will be dominate and be the only one to show...like dropping EVERYTHING, constantly stumbling, and continually walking into objects. Or the other reality will present itself...where I fall, stumble, and walk into stuff only HALF the time...which is also known as a good day.
While laying on my back in the driveway, having just finished a grand fall backward, I realized that I don't know my neighbors very well. They seem to be good people, but at that moment I realized they are not anything like the good people at State Farm....who, by the way, were not there. ( Take a second, it will come to you.)
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