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-
I have a feature on the right side of my blog that will allow you to enter your email if you would like to receive weekly notifications when I post a new blog. Just enter your address in the box that says submit and then follow the short steps given. An email will be sent to you to confirm your activation. Confirm the email and you are signed up.
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
Wednesday, November 27, 2013
Perceptions, Excuses, And Pie
Here is a link to the audio version of this blog, if you would prefer to listen: www.youtube.com/watch?v=W1XD4LJNnCU
It was right there. It's always been right there, in front of me for over ten years, hanging like a massive cluster of grapes, and it's finally dawned on me. I have got a perfect, entirely foolproof excuse. Want to know what it is? Of course, you do, but I will come back to that in a minute. First, I would like to talk about perceptions. The thing about the progression of my condition is that it is very slow. Even though it is impossible for me to do certain things...and my balance has been severely compromised, I look somewhat normal, (I say somewhat normal because if I didn't I'm sure someone would rise up and cry, " slander and unusual cruelty against the word normal, and, your Honor, that is a gross misrepresentation")! Looking somewhat normal is a profoundly negative thing when it comes to being near someone who could apparently use a hand, and wonders why you are just standing there. Clearly, this is a reflection of the kind of parents you had as a child, it seriously calls into question your mental competence as a parent, and probably casts a dark shadow over your future grand-parenting skills as well.
In the early days, (last week), this really bothered me. I'd find myself stammering all sorts of excuses for the imagined rudeness. I think once I even mumbled something about my doctor as I stood by and watched whatever it was that was being done that I couldn't do at the moment. Which brings me back around to laying out for you the great excuse I have stumbled upon,(I would say, "run into," but I can't run anymore). The idea is incredibly simple. Just start every sentence with, " My Neurologist said.....", or, "My Neurologist recommends.....", or, "My Neurologist thinks...Who's going to question your Doctor? They're the expert, right? They went to medical school for years and have the proper experience, right? "Yeah Stan, my Neurologist said that I shouldn't lift that, but instead take a nap." "My Neurologist recommends that I continue doing as much exercise as I feel I can without taxing myself or putting myself at risk for injury." "My Neurologist thinks I'm gonna need a bigger piece of pie," (scoop of ice cream, a slice of cake, whatever works at the moment is fine).
Speaking of dessert, we are again heading into the Holiday Season. I'm hoping you will all be surrounded by family and friends. I'm hoping that you will all take the time to count your blessings, and enjoy the warmth and love around you.
I am going to take this time off but will be back to share more after the New Year. Until then, I wish you a Happy Thanksgiving, a Merry Christmas, and a Happy New Year!
And I'm hoping that if you're coming to my house, that you don't forget the dessert, "My Neurologist said........".
Merry Christmas from the Wolfer Family...............
Here is a link to the audio version of this blog: https://www.youtube.com/watch?v=W1XD4LJNnCU
It was right there. It's always been right there, in front of me for over ten years, hanging like a massive cluster of grapes, and it's finally dawned on me. I have got a perfect, entirely foolproof excuse. Want to know what it is? Of course, you do, but I will come back to that in a minute. First, I would like to talk about perceptions. The thing about the progression of my condition is that it is very slow. Even though it is impossible for me to do certain things...and my balance has been severely compromised, I look somewhat normal, (I say somewhat normal because if I didn't I'm sure someone would rise up and cry, " slander and unusual cruelty against the word normal, and, your Honor, that is a gross misrepresentation")! Looking somewhat normal is a profoundly negative thing when it comes to being near someone who could apparently use a hand, and wonders why you are just standing there. Clearly, this is a reflection of the kind of parents you had as a child, it seriously calls into question your mental competence as a parent, and probably casts a dark shadow over your future grand-parenting skills as well.
In the early days, (last week), this really bothered me. I'd find myself stammering all sorts of excuses for the imagined rudeness. I think once I even mumbled something about my doctor as I stood by and watched whatever it was that was being done that I couldn't do at the moment. Which brings me back around to laying out for you the great excuse I have stumbled upon,(I would say, "run into," but I can't run anymore). The idea is incredibly simple. Just start every sentence with, " My Neurologist said.....", or, "My Neurologist recommends.....", or, "My Neurologist thinks...Who's going to question your Doctor? They're the expert, right? They went to medical school for years and have the proper experience, right? "Yeah Stan, my Neurologist said that I shouldn't lift that, but instead take a nap." "My Neurologist recommends that I continue doing as much exercise as I feel I can without taxing myself or putting myself at risk for injury." "My Neurologist thinks I'm gonna need a bigger piece of pie," (scoop of ice cream, a slice of cake, whatever works at the moment is fine).
Speaking of dessert, we are again heading into the Holiday Season. I'm hoping you will all be surrounded by family and friends. I'm hoping that you will all take the time to count your blessings, and enjoy the warmth and love around you.
I am going to take this time off but will be back to share more after the New Year. Until then, I wish you a Happy Thanksgiving, a Merry Christmas, and a Happy New Year!
And I'm hoping that if you're coming to my house, that you don't forget the dessert, "My Neurologist said........".
Merry Christmas from the Wolfer Family...............
Sunday, November 17, 2013
Night Trips
Here is a link to the audio version of this blog, if you would prefer to listen: www.youtube.com/watch?v=ONy7xNeIjCU
Several months ago I wrote a short paragraph and posted it on Facebook. I then had some success having an article published in the NFA magazine, Generations. I decided at that point, then, to re-work the little paragraph I had posted, name it, “Night Trips To The Bathroom,” and submit it to NAF. They accepted it but at this point don’t know if it will actually make it into the winter issue. So I decided to re-work it again, and I would like to present it for you to read. If you do get the NAF publication, you may or may not see a version of the following.
Several months ago I wrote a short paragraph and posted it on Facebook. I then had some success having an article published in the NFA magazine, Generations. I decided at that point, then, to re-work the little paragraph I had posted, name it, “Night Trips To The Bathroom,” and submit it to NAF. They accepted it but at this point don’t know if it will actually make it into the winter issue. So I decided to re-work it again, and I would like to present it for you to read. If you do get the NAF publication, you may or may not see a version of the following.
Night Trips To The Bathroom
Being woken up at night, no matter how you slice it, is annoying. The real presence of Ataxia takes this a step or leap beyond annoying to the realm of mission impossible. There have been a few nights when, upon waking, I’m sure I’ve seen the fuse burning as it races across my bedroom floor, the first sign that there’s potential trouble ahead. So, I lay there for a second or thirty trying to prepare myself mentally for the road ahead. At this point, I would like to mention the fact that my brain quite often fibs to the rest of my body by telling it that this can and will be easily done. This “lie” is often said by my brain and usually ends in tears, sometimes even mine. After spending the time needed to mentally prepare, I now move to the second phase, or what would be more accurately referred to as, the second problem. Now I have to switch from a purely mental exercise to a physical reality. And, so, I swing my legs to the edge of the bed, sit up, and try to focus on the task ahead while my bladder yells at me with increasing levels of volume. I launch myself off the bed only to discover that my leg muscles are not feeling very cooperative and I lurch around like a newborn calf, ( I refer you back to my last article and point out the part in which I try to hurry). The level of volume from the bladder has now increased to a pitch even the neighbors can hear,( while out for a walk they will stop me and inquire if I made it in time….embarrassing, but at least I know they care). Meanwhile, my eyes are seeing all the potential hazards, (albeit, dark shapes), and also being reminded by the helpful part of the brain of the endless possibilities for injury. My toes are feeling completely vulnerable, being subject to the lurching and shuffling of the legs, that and the fact that they know all too well what can happen and the very real chance of pain. They would like to suggest little hard hats if possible, or even steel toed slippers would be nice. Once I have actually made it, I am very tempted just to lie down on our fuzzy bath mat instead of facing a return journey. I bounce off so many walls and furniture it feels like I’m in a massive spanking machine. When I do get back to bed, (or wherever I end up), I am very thankful that this will more-than-likely be limited to one trip for tonight, and I am very apprehensive about the days when multiple trips are necessary.
This is a link to the audio version of this blog: https://www.youtube.com/watch?v=ONy7xNeIjCU
This is a link to the audio version of this blog: https://www.youtube.com/watch?v=ONy7xNeIjCU
Saturday, November 9, 2013
Limited Options, Challenges, and Serious Obstacles
Here is a link to the audio version of this blog, if you would prefer to listen: www.youtube.com/watch?v=jRRCXqP8z-M
The presence of a Neurological disease in my life has certainly brought some challenges, but let’s be clear, they're not all bad. For example, running with scissors is no longer an option. Mother always told you not to, and now it’s no longer possible. Change a ceiling light? Participate in a barn raising? Run with the bulls in Pamplona Spain? Sorry, wish I could.
And then, some decisions are made for you. Things like, “we would love to have you take thirty to forty-five seconds and fill out this short novel, and could you please write legibly in the tiny spaces provided?", or, “we need to update our medical records and would appreciate if you could write down your complete medical history starting with your first breath.” Uh, no, that’s not happening. I have had nurses, my kids, my wife, and small children who happened to be around fill out personal forms for me, (sure, the later was in crayon, but it got done, so I didn't care).
And then some things are plain old obstacles. An excellent example of this would be the hand dryer in a public restroom. You would think that the eight years spent dancing on a chorus line in Vegas would come in handy here, but the makers of this contraption apparently thought through all the angles and possible scenarios. So I accept my fate and wave my hand back and forth like I’m a deranged conductor before an errant orchestra and after a lengthy musical, am rewarded with the glorious sound of a towel being dispensed. It’s then that I realize that they seriously expect me to dry my hands with a six square-inch, one-ply piece of rice paper. I’m thinking that I could possibly need six or twenty-five more and that it would have been easier to just not use the restroom.
Crowds are another serious obstacle for me. I use the word ''serious'' because most things are one or the other, a challenge or an obstacle. Crowds are both, an extreme overachiever. Put me in a situation or tight quarters with more than one person, and I turn into the person at the party that is so obnoxious and clumsy that EVERYONE is soon uncomfortable, (you know it's time to leave when they begin to put away their breakables and hide their valuable antiques). Sigh….that’s Ataxia. An ever-present stench that’s not really a present. In actuality, it’s a lot like stepping into something that smells atrocious, and that follows you everywhere like buzzards in a desert.
I’ll say one thing, life is never dull, there are always limited options, challenges, and serious obstacles. It’s all how you look at it. Me? I choose to laugh when crying is not an option……….However, I need you to be very clear on something, ATAXIA IS NOT FUNNY, and it has never been, nor will it ever be, my intention to give that impression. I choose to point out and poke fun at those things in my life that have happened BECAUSE of, or that have come OUT OF Ataxia.
I have met some incredibly inspiring and wonderful people, and it warms my heart to know you all and to have the privilege to call you all my friends. Ataxia is a dreaded condition but I choose to laugh, and I invite you all, my dear friends, to laugh with me.
This is a link to the audio version of this blog: https://www.youtube.com/watch?v=jRRCXqP8z-M
And then, some decisions are made for you. Things like, “we would love to have you take thirty to forty-five seconds and fill out this short novel, and could you please write legibly in the tiny spaces provided?", or, “we need to update our medical records and would appreciate if you could write down your complete medical history starting with your first breath.” Uh, no, that’s not happening. I have had nurses, my kids, my wife, and small children who happened to be around fill out personal forms for me, (sure, the later was in crayon, but it got done, so I didn't care).
And then some things are plain old obstacles. An excellent example of this would be the hand dryer in a public restroom. You would think that the eight years spent dancing on a chorus line in Vegas would come in handy here, but the makers of this contraption apparently thought through all the angles and possible scenarios. So I accept my fate and wave my hand back and forth like I’m a deranged conductor before an errant orchestra and after a lengthy musical, am rewarded with the glorious sound of a towel being dispensed. It’s then that I realize that they seriously expect me to dry my hands with a six square-inch, one-ply piece of rice paper. I’m thinking that I could possibly need six or twenty-five more and that it would have been easier to just not use the restroom.
Crowds are another serious obstacle for me. I use the word ''serious'' because most things are one or the other, a challenge or an obstacle. Crowds are both, an extreme overachiever. Put me in a situation or tight quarters with more than one person, and I turn into the person at the party that is so obnoxious and clumsy that EVERYONE is soon uncomfortable, (you know it's time to leave when they begin to put away their breakables and hide their valuable antiques). Sigh….that’s Ataxia. An ever-present stench that’s not really a present. In actuality, it’s a lot like stepping into something that smells atrocious, and that follows you everywhere like buzzards in a desert.
I’ll say one thing, life is never dull, there are always limited options, challenges, and serious obstacles. It’s all how you look at it. Me? I choose to laugh when crying is not an option……….However, I need you to be very clear on something, ATAXIA IS NOT FUNNY, and it has never been, nor will it ever be, my intention to give that impression. I choose to point out and poke fun at those things in my life that have happened BECAUSE of, or that have come OUT OF Ataxia.
This is a link to the audio version of this blog: https://www.youtube.com/watch?v=jRRCXqP8z-M
Wednesday, November 6, 2013
Early Gifts
Here is a link to the audio version of this blog, if you would prefer to listen: www.youtube.com/watch?v=KI7-5g0fSmo
I have often wondered if being identified as having a gift at an early age means that you have been doing nothing but essentially re-gifting, all of the years that followed? The reason I’ve asked myself this is because I was told as a child that I had a gift for making others laugh. It came naturally to me, and I loved it. One of my greatest memories was while in Mrs. McDonald’s third-grade class. I performed little impromptu pantomimes in front of the class that followed the same underlying theme every week. The idea is that an old man is slowly falling asleep and jerking every few seconds to keep himself awake while at the same time gradually sliding off the chair. Upon landing on the floor in a full-blown state of slumber, the old man would explode in a flurry of confusion and exasperation. This little skit never failed to entertain and would weekly bring the house down, (and by a house I mean twenty-five sweaty third graders and a desperate teacher in a small classroom). I think that particular memory stays with me because it was prophetic. You see, this has become a reality. I am now that old man and the chair has become my world.
I have often wondered if being identified as having a gift at an early age means that you have been doing nothing but essentially re-gifting, all of the years that followed? The reason I’ve asked myself this is because I was told as a child that I had a gift for making others laugh. It came naturally to me, and I loved it. One of my greatest memories was while in Mrs. McDonald’s third-grade class. I performed little impromptu pantomimes in front of the class that followed the same underlying theme every week. The idea is that an old man is slowly falling asleep and jerking every few seconds to keep himself awake while at the same time gradually sliding off the chair. Upon landing on the floor in a full-blown state of slumber, the old man would explode in a flurry of confusion and exasperation. This little skit never failed to entertain and would weekly bring the house down, (and by a house I mean twenty-five sweaty third graders and a desperate teacher in a small classroom). I think that particular memory stays with me because it was prophetic. You see, this has become a reality. I am now that old man and the chair has become my world.
My friends use always to tell me I was funny and somebody would inevitably always write something to that effect in my yearbook. Now, most people with siblings have that one who makes it his or her mission to make sure you remain…..shall we say, humble. My brother would zero in on that comment and tell me to say something funny. I would respond with the very poignant, “uh….uh…..” to which he would respond, “ you are NOT funny.” But I would always get the last laugh because my dad had provided my two older brothers and me with boxing gloves, which were always available when we wished to express our love and support for one another. When this particular brother would talk me into boxing with him, as he quite often did, the only way I could survive would be just to start laughing. This would cause him to laugh, and I then had free reign to punch away. Try it for yourself sometime, it worked wonders for me. In fact, as an awkward kid, it was my only play. The same brother would always sweet talk me into playing football with him, which always ended the same. I’d get royally creamed, and then we’d watch a good game on television a week later, get all ramped up, I’d forget the last blaze of glory, and the cycle would repeat. He would also talk me into playing catch during baseball season with promises that he would not throw hard this time, and I always bought it, and like a person who just spent one-thousand dollars on a useless piece of modern art, would always regret it. Another example of my total sports domination before I wrap this whole thing up. Like most adolescent boys, I went out for little league. I spent the season in right field and striking out. Except for one time. One time I had bugged the coach enough that he let me try to pitch in a game. This may sound like an exaggeration, but it isn’t. I wound-up, and…….threw the ball over the backstop, which was probably 10 to 15 feet high.
My older two brothers and myself (my youngest brother is not pictured).
I mention all this not only because it’s fun for me to remember such a wonderful childhood but also to emphasize that my early life was somehow marked by pre-Ataxia. No, it is not a proven fact, but it is an unyielding impression or theory even. I do not mean to overstate this belief, so I am going to move on from the pre-Ataxia life and in later writings talk about life’s realities in the present. I’ve told enough true tales from my past…..okay, one more, and that’s it. I was in the sixth grade and attending a roller skating party. I fancied myself to be a very suave little man and was carrying a glass container of a cheap, but highly potent, cologne in my front shirt pocket. Having an incredible sense of balance, that I have previously established I had, I quickly and deftly laced up my skates, stood up, and promptly fell forward into the short wall surrounding the rink, shattering the bottle in my pocket and drenching me in a cologne-induced funk. Skating was never quite as fun after that.
This is a link to the audio version of this blog: https://www.youtube.com/watch?v=KI7-5g0fSmo
This is a link to the audio version of this blog: https://www.youtube.com/watch?v=KI7-5g0fSmo
Sunday, November 3, 2013
Thanks and Dedication
www.youtube.com/watch?v=aAz7AZan-eg
A massive thank-you to you my readers for all the positive feedback, comments, and kind words. I started this blog as an experiment and as an outlet and therapy for myself. The response has been nothing short of heartwarming for me. I have heard stories of inspiration and testimonies of raising Ataxia awareness among friends, family, and loved ones. Let me assure you that this has become an enormous motivation for me to continue and I plan to. However, there is another source of encouragement for me, and truly my driving force. Her name is Melissa, and I have been blessed to have her by my side for 24+ years now. We have had some rough times, but they were always my fault,( Honey, if you’re reading this, that was for you). Without her, my condition would be a whole lot closer to being unbearable. From the moment I received the diagnosis to the present, she has been the source of my help and strength. Saying thank-you does not even begin to convey how I feel and I want to dedicate my writings to her. I love her, and I love you all and again say thank-you.
Thanks and dedication
Here is a link to the audio version of this blog, if you would prefer to listen
A massive thank-you to you my readers for all the positive feedback, comments, and kind words. I started this blog as an experiment and as an outlet and therapy for myself. The response has been nothing short of heartwarming for me. I have heard stories of inspiration and testimonies of raising Ataxia awareness among friends, family, and loved ones. Let me assure you that this has become an enormous motivation for me to continue and I plan to. However, there is another source of encouragement for me, and truly my driving force. Her name is Melissa, and I have been blessed to have her by my side for 24+ years now. We have had some rough times, but they were always my fault,( Honey, if you’re reading this, that was for you). Without her, my condition would be a whole lot closer to being unbearable. From the moment I received the diagnosis to the present, she has been the source of my help and strength. Saying thank-you does not even begin to convey how I feel and I want to dedicate my writings to her. I love her, and I love you all and again say thank-you.
So, with that being said, I would now like to present to you the next article in this blog that I call My Life……hope you enjoy….
Reflections On Reflexes
When I was younger, the one thing I could always count on was my cat-like reflexes (lately it would seem that the inner cat has gotten a little drunk). Okay, so they weren’t what some would call….okay, anybody would call "cat-like," but they were pretty good. I used to watch Gunslinger movies as a kid and think, "If I were a cowboy, I would’ve shown that so-called fastest gun a thing or two." I probably would have shown them and gotten a reputation and a cool name that everyone would know like, “the grease-co-kid, man-o-lighten, or……Jimmy the Weasel." But, let’s be honest, I probably couldn’t have stayed on a horse, much less ridden one, and walking from town-to-town would have been embarrassing. So, I guess it was all for the best anyway. But back to those reflexes. During the pre-ataxia days, I could catch falling objects without punching myself in the crotch, nose, or feet. I could be scared by a well-intentioned friend and jump without causing serious injury to myself or others. But alas, what used to be called “swift” and “sure” is now referred to as “jerks” and “spasms,” thanks to the magic of Ataxia. Sure, my inner cat has become unstable, and I jump, lurch, and dance at every sound above a normal talking voice. Even a little love pat from my wife causes me to hug the nearest wall like I’m on the filming set and trying out for a new Spiderman movie. Or there are the times I have been honked at by friends as I’m walking and they are driving past. I might have invented some new dance steps during those times. But, like everything else that most people take for granted, my lack of any form of coordinated reflexes is just another thing to which I am learning to adjust.
This is a link to the audio version: https://www.youtube.com/watch?v=aAz7AZan-eg
This is a link to the audio version: https://www.youtube.com/watch?v=aAz7AZan-eg
Wednesday, October 30, 2013
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.
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
Link to audio version of this blog: https://www.youtube.com/watch?v=R_gbxDHsIi0
Sunday, October 27, 2013
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.
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
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