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.
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