Here is a link to the audio version of this blog, if you would rather listen: https://www.youtube.com/watch?v=8HQvagoXbQg
As of late, I've found myself embroiled in a war and have become a mediator of sorts between two factions. And the thing is, these two sides used to be friends and worked well and quite efficiently together. They were put together as a team long ago, (forty-nine years to be exact), and were always friends. I don't know when precisely the breakdown in communication happened, although I suspect that little things happened right from day one, but over the last several years it seems to be intensifying. I have sat down with both sides and had serious talks, and you wouldn't believe the accusations, name-calling, and general mud-slinging that goes on, (I won't repeat it as this article is rated family-friendly).
But, before I go any further, I will identify for you the two parties being referred to here in case you haven't seen it coming. On one side is my brain, which is very slowly, and with great difficulty and frustration, coming to terms with the limitations of, and continues to put unrealistic expectations on, the second party. The second party being, of course, every other part of my body.
One of the problems I am facing right now is that the brain is responding to situations instantly and sending signals that it expects to be obeyed without pause, time for reflection, or regard to reason. For example, I'm sitting and relaxing in a recliner or at the dinner table with family, and someone knocks on our back door. The brain quickly responds and sends out a priority message to the leg muscles, who themselves were on a lunch break, to go and check it out. The leg muscles respond the best they can, but there is usually a lot of jerking, bouncing, crashing, and sometimes pain involved. The brain then complains through an internal memo that it did its job and was embarrassed by the poor performance of everyone else involved. You would think that the brain would have a full understanding by now but some reflexes are hard to overcome, and I am in constant negotiations to get these two to work together again and find a middle ground.
But, before you get the impression that it is all the brain's fault, let me say that the other players in this conflict are just as culpable. Once in a while, various muscle groups will act like they have a mind of their own, (yes, I know this is not an accurate statement, but for the sake of this example I'm going to ask you to go with it). Even though there are urgent danger signals being sent out from the brain, (that sound like a squadron of British police cars), warning the legs to not go there, attempt that, or to lift that, these things tend to continue to happen anyway, usually in a proportionately, devastatingly ugly way. The gloating by the said brain that goes on afterward is not helpful.
Sometimes after one of these incidences the brain will go into a form of incredibly mature pouting because it was not listened to and will refuse to help when a request is sent by another member of the body. Let's say I'm engaged in one of those high-stakes games of Twister, (read the blog, titled Oh, The Games We Play), and the legs are so tied up that they need some help. A request is sent from the leg muscles to the brain, but all that is sent back is the complete lyrics to Gimme Three Steps by Lynyrd Skynyrd. Knowing this may be fun and a useful thing to know if I am engaged in a little karaoke, but which is not at all helpful when in the midst of a heated game of Twister.
It can be very tiring, and things can get a little immature with all the pouting and non-cooperation going on. The other muscles can be just as bad, and when they pout, they usually do something that has the brain kicking, screaming, and digging divots in the floor as it is drug into the dark and it desperately tries to maintain it's grip on a situation that is quickly spiraling out of control.
I'm happy to report, however, that the two sides are learning to work together and every day I get them closer to a resolution. The occurrence of unreasonable demands and random bouts of pouting are becoming fewer. Little skirmishes do occasionally still pop up at the most inopportune times, ( when is it EVER, really?), but it is a bit more of a manageable situation. There will always be issues, like the wild twitching of the arms and legs, or the unprovoked leg cramps in the middle of the night. Sigh, thanks to Ataxia it will always be something. The bright side? I am beginning to see movement from both parties towards mutual understanding and peace.
To My Readers-
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Thank you all, my friends! Jason
Tuesday, December 31, 2013
Wednesday, December 11, 2013
Oh....The Games We Play.
Here is a link to the audio version of this blog, if you would prefer to listen: https://www.youtube.com/watch?v=ziWK_VoUsmY
Ever since I can remember, I've loved to play games. I still do. There have been many memorable times with family and friends. Lately, though the old favorites, like Battleship, and Operation, are coming a little too close to reality for my taste. Take Battleship for example. I spent hours with my brothers and friends playing this game, taking turns sinking each other's battleship or the slippery little PT Cruiser, (I think that was the name of the small boat with two holes). In my current life, it feels as if I'm playing a giant game with reality. However, instead of my ships taking a beating, it's me, as if every time a number is called out I lose another physical ability. "A-seven...crap, there goes my clear speech," "B-seventeen...there goes the writing," "F-twelve...well, I didn't want to walk on flat ground without falling, anyway"!
Speaking of slurred speech, I think that one of the options of the voice assistant on a smartphone or GPS device should be that of someone with Ataxia, driving directions might be a problem, but then again, you might just get to see some new scenery.
Then, there was Operation. Under the best of circumstances, the poor cartoon guy on the operating table was in big trouble as long as I was the one wielding the tweezers. It was a sure thing that I would always touch the sides and be rewarded by that loud, obnoxious buzz. Today, I hear that "buzz" continually as I bounce off the walls, furniture, and trip over small animals. I bet if I were wearing a big red light on my nose it would constantly be blinking (by the way, bouncing off everything also reminds me of Pinball, which is a game that I also used to play).
There were other games my friends, and I liked to play. For instance, there was a game we often played called Risk. It was a blend of strategy with the unknown of the role of the dice. Not everyone liked Risk, and one game could last for hours or days (if you used to watch Seinfeld, Kramer and, Newman play a game of this in an episode). The thing about Risk was that it was a variation on the same theme of a lot of other strategy games. And just like thinking through moves in the competition, I start every day with a plan. But just like the strategies in the game are subject to the luck of the dice, so are my ideas.
Not that I role dice every morning to see what my day will be like, but I sometimes wonder if when they do another MRI of my head, they won't see the shadow of a pair of dice? " Yeah Doc, I knew they were there, the role determines what kind of day I'll have. Triple sixes is good, everything else....not so much." My brain also establishes things the same way as that little round cage in Bingo that disperses the old wooden balls with numbers on them. And in much the same way as Battleship, someone yells out a number, but instead of the triumphant shouts of, "Bingo!", one can usually hear me groan in pain or grumble in frustration.
And then, of course, sometimes I feel like I'm immersed in a game of Twister. But not the version you innocently played as a kid, oh no, this is the high-stakes speed round on the professional circuit. It is also being judged by former champions, so, you'll hear things like," You're right Jim, he did completely rotate his hips at a perfect right angle, but from the look of anguish on his face I don't think it was intentional." Or, "our camera clearly shows that his hand was violently shaking and, even though he was aiming for the green circle, fell just outside the blue circle, resulting in a yellow flag being thrown and an infraction on the mat." And the other judge would say something like, " Yeah, you really hate to see that Bob, and it makes you wonder if some people should just not play this game." I agree with this judge, by the way, and have been trying to quit the game for what seems to be years now.
Or there are also times I feel like I'm in a big game of Mousetrap. I know it's not always true but it seems like I'm moving through a well thought out obstacle course, and I'm just waiting for that half-circular, plastic cage to fall. One of my favorites games growing up was Rock Em' Sock Em' Robots. Two robots were in a little square ring facing each other and were controlled outside the ring by two joysticks with a depressible button on top. The robot could only jab and if you got a good shot in you were rewarded by a "zip" sound as the other robot's head shot straight up. One robot was blue, and one robot was red. I am the blue robot, life is the red robot, and Ataxia is the happy little child pushing the buttons. Whenever I don't hear the Battleship or Bingo numbers being shouted out, or the Twister judges and the helpful commentary, or the "buzzing" of a botched operation, I hear the "zipping" as Ataxia lands another lucky, (or unlucky), punch.
I know these are all just games, but as I play, I can't help but think and draw similarities to my life. And, no, it doesn't stop me from asking, "Do YOU wanna play a game with me"?
Ever since I can remember, I've loved to play games. I still do. There have been many memorable times with family and friends. Lately, though the old favorites, like Battleship, and Operation, are coming a little too close to reality for my taste. Take Battleship for example. I spent hours with my brothers and friends playing this game, taking turns sinking each other's battleship or the slippery little PT Cruiser, (I think that was the name of the small boat with two holes). In my current life, it feels as if I'm playing a giant game with reality. However, instead of my ships taking a beating, it's me, as if every time a number is called out I lose another physical ability. "A-seven...crap, there goes my clear speech," "B-seventeen...there goes the writing," "F-twelve...well, I didn't want to walk on flat ground without falling, anyway"!
Speaking of slurred speech, I think that one of the options of the voice assistant on a smartphone or GPS device should be that of someone with Ataxia, driving directions might be a problem, but then again, you might just get to see some new scenery.
Then, there was Operation. Under the best of circumstances, the poor cartoon guy on the operating table was in big trouble as long as I was the one wielding the tweezers. It was a sure thing that I would always touch the sides and be rewarded by that loud, obnoxious buzz. Today, I hear that "buzz" continually as I bounce off the walls, furniture, and trip over small animals. I bet if I were wearing a big red light on my nose it would constantly be blinking (by the way, bouncing off everything also reminds me of Pinball, which is a game that I also used to play).
There were other games my friends, and I liked to play. For instance, there was a game we often played called Risk. It was a blend of strategy with the unknown of the role of the dice. Not everyone liked Risk, and one game could last for hours or days (if you used to watch Seinfeld, Kramer and, Newman play a game of this in an episode). The thing about Risk was that it was a variation on the same theme of a lot of other strategy games. And just like thinking through moves in the competition, I start every day with a plan. But just like the strategies in the game are subject to the luck of the dice, so are my ideas.
Not that I role dice every morning to see what my day will be like, but I sometimes wonder if when they do another MRI of my head, they won't see the shadow of a pair of dice? " Yeah Doc, I knew they were there, the role determines what kind of day I'll have. Triple sixes is good, everything else....not so much." My brain also establishes things the same way as that little round cage in Bingo that disperses the old wooden balls with numbers on them. And in much the same way as Battleship, someone yells out a number, but instead of the triumphant shouts of, "Bingo!", one can usually hear me groan in pain or grumble in frustration.
And then, of course, sometimes I feel like I'm immersed in a game of Twister. But not the version you innocently played as a kid, oh no, this is the high-stakes speed round on the professional circuit. It is also being judged by former champions, so, you'll hear things like," You're right Jim, he did completely rotate his hips at a perfect right angle, but from the look of anguish on his face I don't think it was intentional." Or, "our camera clearly shows that his hand was violently shaking and, even though he was aiming for the green circle, fell just outside the blue circle, resulting in a yellow flag being thrown and an infraction on the mat." And the other judge would say something like, " Yeah, you really hate to see that Bob, and it makes you wonder if some people should just not play this game." I agree with this judge, by the way, and have been trying to quit the game for what seems to be years now.
Or there are also times I feel like I'm in a big game of Mousetrap. I know it's not always true but it seems like I'm moving through a well thought out obstacle course, and I'm just waiting for that half-circular, plastic cage to fall. One of my favorites games growing up was Rock Em' Sock Em' Robots. Two robots were in a little square ring facing each other and were controlled outside the ring by two joysticks with a depressible button on top. The robot could only jab and if you got a good shot in you were rewarded by a "zip" sound as the other robot's head shot straight up. One robot was blue, and one robot was red. I am the blue robot, life is the red robot, and Ataxia is the happy little child pushing the buttons. Whenever I don't hear the Battleship or Bingo numbers being shouted out, or the Twister judges and the helpful commentary, or the "buzzing" of a botched operation, I hear the "zipping" as Ataxia lands another lucky, (or unlucky), punch.
I know these are all just games, but as I play, I can't help but think and draw similarities to my life. And, no, it doesn't stop me from asking, "Do YOU wanna play a game with me"?
Monday, December 9, 2013
Lighter Side....Or More Fruitcake Anyone?
Here is a link to the audio version of this blog, if you would prefer to listen: www.youtube.com/watch?v=zZiPP_28jew
By now you know that I try not to focus on the negative, (which I might add is a broad category), and look at or focus on the positive. I am not always successful in this, but I feel that any day outside of myself is a good day. By that, I mean taking the time to help others instead of dwelling on my problems. It means always looking at what I can still do, not what I can’t, and doing it. It means making myself available to be an encouragement to someone who is having a harder time than myself at the moment. It means to simply listen to someone to show them that they still matter. My friends, I joke about Ataxia, and probably always will, okay, I definitely will. But, life does not stop because I have this. No matter what your struggle or situation is, I urge you, dear friends, to continue. You are a living testimony. Of what is your choice.
By now you know that I try not to focus on the negative, (which I might add is a broad category), and look at or focus on the positive. I am not always successful in this, but I feel that any day outside of myself is a good day. By that, I mean taking the time to help others instead of dwelling on my problems. It means always looking at what I can still do, not what I can’t, and doing it. It means making myself available to be an encouragement to someone who is having a harder time than myself at the moment. It means to simply listen to someone to show them that they still matter. My friends, I joke about Ataxia, and probably always will, okay, I definitely will. But, life does not stop because I have this. No matter what your struggle or situation is, I urge you, dear friends, to continue. You are a living testimony. Of what is your choice.
And so I will continue………….
One of the most significant ironies in life is the reality that the things I struggled with or against as a child...either because of a lack of the necessary skills needed, was too busy in the sandbox, or trying to learn to ride a bike...are things that I should be able to do as an adult, but can’t. An example of this would be Dominoes. I was, as a child, never able to set up more than one in a row. Now? I don’t necessarily have a burning desire to play with Dominoes, but I should be able to reach into a cupboard or grab something off a shelf without setting off a chain reaction. I mean, seriously, EVERYTHING starts to go over as if I had just spent days setting it up and now I’m going for the world record. Trees even begin to fall; people start screaming, it's mad panic……okay, okay, that’s a stretch, (nobody screams).
The dogs in my house are an excellent example of the current situation I find myself in. The best way to describe this is to tell you about the other night. My wife had made popcorn for us to snack on while we were relaxing in the evening. As is usually the case my wife and I were side-by-side on the couch, and also as per usual, the two dogs were climbing on me. After having dropped a few kernels of corn, my wife turned to me with a grin, and said, “You, my friend, are the weakest link.” It’s very true; it is one of the first things a new dog learns in our house as if they are thinking to themselves, “If I hang around the wobbly guy long enough, good things are gonna happen”! When I have food, I’m their best friend. And the thing is, I don't mind being the weakest link. Somebody's got to do it, right? And it has taken a lot of pressure off meal times once I accepted that, yes, I would continue to spill.( The dogs have me covered)! The sad thing is I can't take them with me into restaurants. (There should be a handicap status, I mean, they would stay under the table and vacuum the floor, think of the time savings for the staff!)
I have never had a tolerable relationship with fruitcake, and by, "tolerable relationship," I mean of course that I don't like it. To me, the recipe goes something like this: take all the struggles, obstacles, pain and sorrows of life, mix all of these with a healthy dose of Ataxia and.....snap, crackle, pop.... fruitcake! I've been told that you can wrap it in a rum-soaked cheesecloth and age it. No, sorry, just give me a glass of rum and some skittles, and I'll be just fine, (no cheesecloth needed). If the medical community suddenly declared one day that my Ataxia could be slowly reversed by consuming 3 ounces of fruitcake daily....well, let's just say things might get interesting and leave it at that, the less said, the better.
I have never had a tolerable relationship with fruitcake, and by, "tolerable relationship," I mean of course that I don't like it. To me, the recipe goes something like this: take all the struggles, obstacles, pain and sorrows of life, mix all of these with a healthy dose of Ataxia and.....snap, crackle, pop.... fruitcake! I've been told that you can wrap it in a rum-soaked cheesecloth and age it. No, sorry, just give me a glass of rum and some skittles, and I'll be just fine, (no cheesecloth needed). If the medical community suddenly declared one day that my Ataxia could be slowly reversed by consuming 3 ounces of fruitcake daily....well, let's just say things might get interesting and leave it at that, the less said, the better.
One of the reasons I joke around so much about my condition is not because I'm unaware of how serious it is, but because it helps me accept the present and not mourn for those things in the past that could have been but never were. Not only do I try to focus on those things in the present which are positive, but I also try not to concentrate on the past, (too much). It’s difficult, but I really do try to smile at memories of the past as compared to the present. And so, I would like to share two pictures. The first one is myself and my beautiful wife as we expect our first child, and the second is myself with my three kids not too long before my diagnoses.
I can live in a state of mourning for what became impossible and the things that I missed, or I can count my blessings and live by faith in the present. You Know what I choose. My question is,"what do you choose"?
Here is a link to the audio version of this blog: https://www.youtube.com/watch?v=zZiPP_28jew
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