Ataxia Part Two

Here is a link to the audio  version of this blog, if you would prefer to listen: www.youtube.com/watch?v=R_gbxDHsIi0

    Another example of the early tendency towards a life of constant upheaval was my unwavering attraction between anything harder than the surface of my eye and my eye. The one physical ability that has proved the test of time is my talent for poking myself. Like a two-year-old who is always putting things in his mouth and/or inserting objects into the outlets, I am doing things that were never intended for my eyes. The only difference is that the young child does these things out of a sense of exploration or curiosity. I already know what my middle knuckle feels like when I use my eye to stop it as it travels at warp speed. I don’t need to explore the possibilities, thank-you. Everything from poking my reading glasses in my eyes while putting them on, to doing a quick stabbing probe of one of my eyes when shampooing my hair, to doing a grazing stab with the fingers whenever I try to brush my bangs, itch my nose, cheek, forehead, or scratch my leg. I even gave myself a paper cut on my eye when reading a newspaper and flipping the page. My eyes have been blistered, had multiple contusions, and I have on several occasions had to use antibiotic creams and eye bandages. It is a wonder I can still see and a testimony to the resiliency of my eyes.

    The following is a piece that I wrote a few months ago, and it was published in the edition of the National Ataxia Foundation fall magazine. Some of you have already read this, and I apologize. However, I have people reading this who have not, and since I have obtained permission from the author to reprint it……I give you:

Tripped up by Ataxia

     I find one of the best ways to combat this dreaded marauder known as Ataxia, (in all its various forms), is to point out life’s little challenges and laugh at them. It’s either that or cry, and I find it very hard to have a positive attitude or to be of help to another if I’m crying. Besides crying would be an admission of defeat and I won’t accept that. And so with that in mind, I would like to present the top 5 little things that are a constant source of frustration and angst for me.

#1.  When putting a twist cap back on a bottle, I would like to be able to hold on to it and not drop it on the floor five or six times. And once I've managed to wrestle the thing on...be able to twist it straight after the first attempt...instead of making it crooked and having to re-twist it several more times.

#2.  When bending over to recover the cap, as mentioned above, it would be nice not to fall forward…banging my head into various pieces of furniture and kitchen appliances…all of which seem to have sharpened their edges when they saw my head approaching.

#3.  When putting a twist tie back on the loaf of bread, or another bag, it would be very helpful not to feel like I am wearing ski gloves…..or to feel like I need a degree in structural engineering to manipulate a two-inch piece of paper-covered wire.

#4   When inserting a key into a lock I would be exceedingly happy if I could do so without the necessary two to three minutes of poking and prodding. This action results in scratches that all my locks and doors can testify to…..and even when I force the key into the hole, it doesn’t always slide in smoothly because I’m applying some new kind of pressure to an angle that would take a substantial math equation to explain.

And #5.  I would really, really like to able to brush my teeth without also running the toothbrush over my chin, cheeks, nose, forehead, and hair.
Link to audio version of this blog: https://www.youtube.com/watch?v=R_gbxDHsIi0

Ataxia Part One

Here is a link to the audio  version of this blog, if you would prefer to listen: www.youtube.com/watch?v=gMkV-cmoEYo

    When I was diagnosed with Ataxia at thirty-eight an old half-burned-out light bulb flickered and sputtered...and then the bulb came fully on. Why? Because this explained so much, my whole childhood raced glaringly through my mind’s eye, and I took a long walk (or stumbling shuffle) down memory lane. Actually, in my case, it’s not so much a memory lane as it is a pitted, one-lane dirt path. I remembered with a sense of awe and wonder all the cuts, burns, stitches, and blood. And that was before I turned two.  I was also late in accomplishing, well everything. While my friends were gleefully riding their bikes at age six or seven I was running alongside whooping and trying to convey that, yes, I am doing this by choice and having a blast. I didn’t have the sense of adventure, not to mention the balance, to learn to not fall over on a bike while at the same time coordinating my feet on the pedals until, well, actually I’m still working on it. Not really. It was by the tender yet mature age of eleven.

    There were a lot of examples of a pre-ataxia childhood but let’s jump ahead and talk about the teen years where I attempt to learn how to drive. This presented a problem for me. It wasn’t so much the feet. That part worked just fine, and I quickly picked up on how to smoothly accelerate and brake, if for you the definition of quickly is a year. The most significant obstacle was steering, I didn’t get it. I thought you had to guide the car like they did on bad TV shows, you know the ones where the scene is inside the vehicle and the person driving is jerking the wheel back and forth like their flying through a dense asteroid field? Yep, that was me. You could have replaced my windshield with a giant video screen and the game Asteroids, and I probably would have done a whole lot better. I’m not sure how my driving instructor stayed sane the summer when I was sixteen, but the guy should have gotten hazard pay and probably a Knighthood out of the deal. Eventually, just like riding a bike, it all came together for me, and at the age of twenty-one, I got my license.  

This is a link to the audio version of this blog: https://www.youtube.com/watch?v=gMkV-cmoEYo