I officially began my infamous life with Spinocerebellar Ataxia just a little over thirteen years ago. It was back in 2003 when I first received the news, and a span of thirteen years may or may not seem as if it were a long time ago...... it all depends on how you look at it, I suppose. The point is that during the thirty-eight years leading up to the diagnosis, I had been blissfully and totally unaware of exactly just what Ataxia is, and what it would eventually look like in my life.
I wish that I could say I have picked up a huge stockpile of knowledge since that day. The truth is that there really isn't a lot, and my secret has become a reality wherein I have become pretty good at faking it. But not EVERYTHING has become smoke and mirrors. Oh no...not everything.
For example, I know now that not in every circumstance is muscle memory a good thing. The instant reflexes that I had possessed when I was younger, which had allowed me to snatch an item I had dropped out of the air before it hit the ground, are presently.... more often than not.... leading me to various injuries.
Self inflicted wounds, such as eye gouging, and stomach punching, just too name a few. I am sure you will be able to imagine the others, but if further explanation is needed, just picture something falling towards the ground and that is somewhere, in it's travel, between my waist and my knees. And now picture me haphazardly throwing my open or closed hand at a high velocity towards that object. Sometimes I catch it, and sometimes I don't. Enough said.
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!
Sometimes I seriously have to wonder if herding one hundred feral cats in a straight line while being engaged in a heated potato sack race would be easier. And no sooner do I think that I've got the bag to successfully seal, and have taken the first step towards the freezer to put it away.... when the bag will open right up and spill half the contents out onto the floor, like it was really designed in the first place to empty it's contents onto a dirty floor at the earliest time possible. Seriously, it's like the ten pound bag of chicken nuggets is full of little paratroopers that can't wait to make their first dive. I am NOT making this up, either, as this fun little scenario has happened to me twice, exactly as I've described it, within the last several days.
I also now know that attempting to follow the first instructions that my brain.... in all it's wisdom.... sends out doesn't always work out well for me. My brain is still stubbornly looking at all the normal tasks, and general problems that I encounter on a daily basis as obstacles that will be easily dealt with.
I am discovering that my mind is,deceitfully...still living in the past and giving me bad advice. Telling me that I don't need to think about everyday situations first, but just jump in and do them. That if I drop something, I should instantly bend over and retrieve it. That if I feel like breaking into a leisurely skip, jog, or interpretive dance, or possibly engage in a eating frenzy without chocking myself into a coma, that it will be okay and work out totally fine.... that I should just dive right in, and go for it. I have learned, through painstaking and extensive field testing, that this is VERY unreliable Intel.
I also know that the first paper towel that I try to pull out of the dispenser in a public restroom will ALWAYS rip, and that by the time I am done drying my hands that the bathroom floor will be covered with pieces and little shards of paper towel. From exhaustive trials, I know that nothing will be accomplished after one try, like tying my shoes, or getting the cap to go on the toothpaste, (I have been known to brush my teeth).
I know that closing my eyes and attempting to take more than one step forward in the shower to rinse my hair has the potential of becoming a life-altering event. I know that no matter how slow, or carefully I move, I will always spill water out of an open cup while walking. I know that laughter is the best way for me to strike back at my Ataxia, and I know that I don't plan to stop anytime soon.
Over all this, I know that Ataxia is adding a little bit of a warped element to my life.
Actually, now that I've really thought about it, I know more than I realized. I guess maybe I just needed to rediscover what I already knew!
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