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

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.

          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

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

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.

    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

Thanks and Dedication

www.youtube.com/watch?v=aAz7AZan-eg

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