The Last Laugh.... Based On True Story-The Foreword

the link to the audio version:www.youtube.com/watch?v=MyYFcZfx3T0&t=37s

About a year ago, over the period of several months, I wrote a foreword, seventeen chapters, and a conclusion. My reason for doing this was to one day publish a book. My whole family was involved, with Melissa providing the artistic work for all the chapter headers. The children (who are now young adults) and Melissa also wrote little introductions at the beginning of each chapter....providing their feelings and views of my life as I have dealt with Ataxia over the last fourteen years.

As I said, my aspirations were on the publication of a book. Over time it has become evident that it would fit better into my current life circumstances to simply post each concurrent chapter on my blog. One of my purposes in writing the book was to get it into the hands of all of you who regularly read my blogs. Over the three-plus years that I have been sharing my thoughts with you all I have been encouraged by several people that I should write a book.

So, that's what I did....and I can think of no better way to get that project to you, my friends than to share it through my blog. So the plan, starting with this foreword, is to post a new chapter every Monday. I hope you enjoy reading it as much as I did in writing it.

Foreword

  Life, for me, began just a little over fifty-two years ago at my conception. The first nine months were a time that was marked by several changes (a few too many to mention) and personal growth. Even though it was a very sheltered kind of life for those first nine months, a lot of fascinating things and adventures happened to me during this period…… but these are stories for another day.

  However, once I was born, that's when I began to accumulate some very intriguing life experiences. I don't remember much….okay, I don't remember anything, but I've heard stories, and they sounded very absorbing. A full-blown, firsthand account of my childhood doesn't begin to come into focus in my mind's eye until I'm the age of twenty-one. I'm joking, of course….I have small flashes of memories starting at the age of four or five when I was awarded my first set of eyeglasses, (really, there was fanfare and everything), which stayed with me until they were gone, somewhere around the age of eighteen.

  I will never forget the love/hate relationship that I had with my glasses. For the better part of my childhood and adolescence, I felt naked whenever my glasses were not resting snugly in position on my face because I had a lazy eye that would only stay straight when it was being encouraged to do so by the prescription lenses.

  I was very cautious about being seen without them, as I always felt that if someone were to look straight into my face for more than a half a second, that they might start to wonder if I was the product of inbreeding. Once the muscles around the eye began, themselves, to go to the gym to workout and build their own muscles up, they were gradually able to start to do their job again.....which was to work towards the goal of keeping things straight.

  After a time, during which the varying strengths of the lenses were gradually reduced as the muscles were growing in strength, the glasses were no longer needed. I guess I should clarify and admit that I had, for the most part, stopped wearing my glasses whenever possible several years before this. I mean, it was the eighties, and glasses just were not cool, and they were cramping my style, (or at least they would have if I had had the forethought to get a style).

  Besides, they used to fog up something terrible whenever I came inside from the cold, rain, or the mere hint of outside air. My mother at the time (and still my mom) however, remained convinced that this was a rather significant mistake, and that I would someday remember all the special times that I had had with my glasses. She liked to remind me that I had formed a friendship and a bond with the spectacles. One day I would come to miss this connection, and this would cause me to come crawling back. I have to admit that a small part of mom's prediction did come true, too….as I discovered around the age of thirty that I actually did begin to miss being referred to as four-eyes by my peers. It was such a special feeling.

  However, that's enough about the glasses. The current writing is supposed to be a book about my experiences, and views concerning the time in my life that I spend with the existence and very real presence of Spinocerebellar Ataxia, or SCA for short. You may be a skeptic, and as you read these words are doubting the very existence of SCA. Let me assure you right now that SCA is real….oh yes, my friends, it is all too real.

In the following few chapters, I will endeavor to spell out for you exactly how Ataxia has affected my current life.

This is me pretending to be a tree...... can you tell where I stop and the tree keeps going? 

The forward of my book... The Last Laugh, Based On A True Story...has now been translated into Portuguese.... Thanks to the work of Isabel Alfaiate! Cerca de um ano atrás, durante o período de vários meses, eu escrevi um prefácio, dezassete capítulos e uma conclusão. A minha razão para isso foi a de um dia publicar um livro. Toda a minha família esteve envolvida, com a Melissa oferecendo o trabalho artístico para todos os títulos de capítulo. As crianças (que são agora jovens adultos) e Melissa também escreveram umas pequenas introduções no início de cada capítulo....dando as suas impressões e pontos de vista da minha vida como eu tenho lidado com Ataxia nos últimos catorze anos. Como eu disse, minhas aspirações eram na publicação de um livro. Ao longo do tempo, tornou-se evidente que seria melhor na minha actual situação de vida simplesmente postar cada capítulo no meu blogue. Um dos meus propósitos ao escrever o livro foi para pô-lo nas mãos de todos vós, que lêem os meus blogues. Durante os três anos em que tenho partilhado os meus pensamentos com todos vós, tenho sido encorajado por várias pessoas, que deveria escrever um livro. Então, foi o que fiz....e que não há melhor maneira de conseguir que o projecto vos chegasse, meus amigos, compartilhando-o através do meu blogue. Então, o plano, começando por esta introdução, é de postar um novo capítulo cada segunda-feira. Espero que vocês gostem tanto de o ler como eu do escrever. Prefácio A vida, para mim, começou há pouco mais de cinquenta e dois anos, quando fui concebido. Os nove primeiros meses foram um período de tempo que foi marcado por várias mudanças (muitas para mencionar) e de crescimento pessoal. Apesar dos primeiros nove meses ter sido muito protegidos durante esse período vivenciei um monte de coisas fascinantes e aventuras ....... mas essas histórias são para outro dia. Porem, depois de nascer, comecei a acumular algumas vivencias muito interessantes. Não me lembro muito bem.... está bem, não me lembro de nada, mas já ouvi algumas histórias, e estas soaram muito absorventes. Um relato completo, em primeira mão da minha infância não começou a entrar em foco, na minha mente até aos meus vinte e um anos. Estou a brincar, está claro....Eu tenho pequenas flashes de memórias, a partir dos quatro ou cinco anos, quando eu recebi os meus primeiros óculos, (houve fanfarra e tudo), experiencia que guardei até que eu me livrei deles por volta dos dezoito anos de idade. Eu nunca vou esquecer a relação de amor/ódio que eu tinha com meus óculos. Durante a maior parte da minha infância e adolescência, eu sentia-me nu sempre que meus óculos não estavam descansando confortavelmente no seu ligar sobre o meu nariz, porque eu tinha um olho preguiçoso que apenas permanecia alinhado quando estava sendo encorajado a fazê-lo pelas lentes de prescrição. Eu tinha muito cuidado de não ser visto sem eles, eu sempre senti que, se alguém olhasse directamente para o meu rosto durante mais de meio segundo, poderiam pensar que eu era o resultado de pais com parentesco entre si. Depois dos músculos em redor do olho iniciarem, por si, irem ao ginásio para treinarem e construir os seus próprios músculos, gradualmente conseguiram funcionar novamente..... que era trabalhar compara o objectivo de manter as coisas em ordem. Depois de algum tempo, durante o qual as intensidades variadas de lentes foram gradualmente reduzidas, ao mesmo tempo que os músculos foram melhorando em termos de força, até que os óculos não foram mais necessários. Eu devo esclarecer e admitir que eu tinha, durante a maior parte do tempo, vários anos antes, deixado de usar meus óculos, sempre que possível. Devo dizer, que estávamos na década de oitenta, e simplesmente usar óculos não era moda, e eles não iam com o meu estilo, (ou pelo menos, se eu tivesse pensado nosso, teriam que ter um estilo). Além disso, eles tornavam-se baços sempre que eu vinha do frio, da chuva, para dentro de casa, ou a mera sugestão de ar exterior. Minha mãe na altura (e ainda a minha mãe) estava convencida de que isto era apenas um erro significativo, e que um dia eu me iria se lembrar de todos os bons momentos que eu tive com meus óculos. Ela gostava de me lembrar que eu tinha formado uma amizade e uma ligação com os óculos. Um dia sentiria a falta desta ligação, e isso poderia causar-me rastejar de volta. Eu tenho que admitir que uma pequena parte da previsão da minha mãe tornou-se realidade, muito....como descobri por volta dos trinta anos, tive saudades de ser chamado os quatro-olhos pelos meus colegas. Era um sentimento especial. Porém chega de falar sobre os óculos. O actual texto supostamente será um livro sobre minhas experiências e pontos de vista referente à altura da minha vida em que eu passo a viver com a existência e a presença muito real de Ataxia Spinocerebelosa, ou SCA. Você pode ser um céptico, e enquanto você lê estas palavras está a duvidar da própria existência de SCA. Eu asseguro-lhe agora que a SCA é real....ah, sim, meus amigos, tudo é muito real. Nos próximos capítulos, esforçar-me-ei para lhe explicar exactamente como Ataxia tem afectado a minha vida actual.Cerca de um ano atrás, durante o período de vários meses, eu escrevi um prefácio, dezassete capítulos e uma conclusão. A minha razão para isso foi a de um dia publicar um livro. Toda a minha família esteve envolvida, com a Melissa oferecendo o trabalho artístico para todos os títulos de capítulo. As crianças (que são agora jovens adultos) e Melissa também escreveram umas pequenas introduções no início de cada capítulo....dando as suas impressões e pontos de vista da minha vida como eu tenho lidado com Ataxia nos últimos catorze anos. Como eu disse, minhas aspirações eram na publicação de um livro. Ao longo do tempo, tornou-se evidente que seria melhor na minha actual situação de vida simplesmente postar cada capítulo no meu blogue. Um dos meus propósitos ao escrever o livro foi para pô-lo nas mãos de todos vós, que lêem os meus blogues. Durante os três anos em que tenho partilhado os meus pensamentos com todos vós, tenho sido encorajado por várias pessoas, que deveria escrever um livro. Então, foi o que fiz....e que não há melhor maneira de conseguir que o projecto vos chegasse, meus amigos, compartilhando-o através do meu blogue. Então, o plano, começando por esta introdução, é de postar um novo capítulo cada segunda-feira. Espero que vocês gostem tanto de o ler como eu do escrever. Prefácio A vida, para mim, começou há pouco mais de cinquenta e dois anos, quando fui concebido. Os nove primeiros meses foram um período de tempo que foi marcado por várias mudanças (muitas para mencionar) e de crescimento pessoal. Apesar dos primeiros nove meses ter sido muito protegidos durante esse período vivenciei um monte de coisas fascinantes e aventuras ....... mas essas histórias são para outro dia. Porem, depois de nascer, comecei a acumular algumas vivencias muito interessantes. Não me lembro muito bem.... está bem, não me lembro de nada, mas já ouvi algumas histórias, e estas soaram muito absorventes. Um relato completo, em primeira mão da minha infância não começou a entrar em foco, na minha mente até aos meus vinte e um anos. Estou a brincar, está claro....Eu tenho pequenas flashes de memórias, a partir dos quatro ou cinco anos, quando eu recebi os meus primeiros óculos, (houve fanfarra e tudo), experiencia que guardei até que eu me livrei deles por volta dos dezoito anos de idade. Eu nunca vou esquecer a relação de amor/ódio que eu tinha com meus óculos. Durante a maior parte da minha infância e adolescência, eu sentia-me nu sempre que meus óculos não estavam descansando confortavelmente no seu ligar sobre o meu nariz, porque eu tinha um olho preguiçoso que apenas permanecia alinhado quando estava sendo encorajado a fazê-lo pelas lentes de prescrição. Eu tinha muito cuidado de não ser visto sem eles, eu sempre senti que, se alguém olhasse directamente para o meu rosto durante mais de meio segundo, poderiam pensar que eu era o resultado de pais com parentesco entre si. Depois dos músculos em redor do olho iniciarem, por si, irem ao ginásio para treinarem e construir os seus próprios músculos, gradualmente conseguiram funcionar novamente..... que era trabalhar compara o objectivo de manter as coisas em ordem. Depois de algum tempo, durante o qual as intensidades variadas de lentes foram gradualmente reduzidas, ao mesmo tempo que os músculos foram melhorando em termos de força, até que os óculos não foram mais necessários. Eu devo esclarecer e admitir que eu tinha, durante a maior parte do tempo, vários anos antes, deixado de usar meus óculos, sempre que possível. Devo dizer, que estávamos na década de oitenta, e simplesmente usar óculos não era moda, e eles não iam com o meu estilo, (ou pelo menos, se eu tivesse pensado nosso, teriam que ter um estilo). Além disso, eles tornavam-se baços sempre que eu vinha do frio, da chuva, para dentro de casa, ou a mera sugestão de ar exterior. Minha mãe na altura (e ainda a minha mãe) estava convencida de que isto era apenas um erro significativo, e que um dia eu me iria se lembrar de todos os bons momentos que eu tive com meus óculos. Ela gostava de me lembrar que eu tinha formado uma amizade e uma ligação com os óculos. Um dia sentiria a falta desta ligação, e isso poderia causar-me rastejar de volta. Eu tenho que admitir que uma pequena parte da previsão da minha mãe tornou-se realidade, muito....como descobri por volta dos trinta anos, tive saudades de ser chamado os quatro-olhos pelos meus colegas. Era um sentimento especial. Porém chega de falar sobre os óculos. O actual texto supostamente será um livro sobre minhas experiências e pontos de vista referente à altura da minha vida em que eu passo a viver com a existência e a presença muito real de Ataxia Spinocerebelosa, ou SCA. Você pode ser um céptico, e enquanto você lê estas palavras está a duvidar da própria existência de SCA. Eu asseguro-lhe agora que a SCA é real....ah, sim, meus amigos, tudo é muito real. Nos próximos capítulos, esforçar-me-ei para lhe explicar exactamente como Ataxia tem afectado a minha vida actual.

The Two-Pronged Security Breach

the link to the audio version: www.youtube.com/watch?v=7hHg7BvMBPs&t=9s

There is a little known, but highly vicious viral attack going around, and in two-thousand and three, my personal life was hacked by this Ataxia Worm. The beauty of this kind of attack (I know, I know...using the word beauty to describe any facet of Ataxia is difficult at best...and as I write this I have a little bile rising in my throat) is that it is able to do its destruction right out in plain sight! It doesn’t have to hide and slink it's way around in the shadows...but, Ataxia gets away with worming itself into seemingly secure systems because no one has yet figured out how to stop it.

How is it getting in, you ask? Is there a backdoor that allows Ataxia to infect a host? No, the problem one hundred percent of the time is that the attack comes in the form of a neurological phishing scheme. This is just the beginning of the problem, though. A technician (Neurologist) has to figure out how the worm gained access in the first place. Secondly, they have to try and figure out which part of the system was vulnerable and responded once the worm was in. As soon as it gets accepted into the system, it expands itself throughout...and begins to cause havoc. Not long after the Ataxia worm has been identified, the infected system will start to lag and perform sluggishly.

This system-wide infection is only the first stage of the attack, though. Ataxia, it would seem, is not content with just scrambling the inner workings of the host...oh, no! I said it was a two-pronged attack because Ataxia also goes after your identity...trying to tarnish your good name, reputation and trash your well-established credit. Ataxia is a viral worm AND an identity thief....and since Ataxia uses a two-pronged mode of attack, I will be from this point forward referring to the viral bug of Ataxia as the scourge.  

There are, unfortunately, numerous ways in which the scourge manifests itself once it gets past the Cerebellum Firewall, and it takes on many different forms. Although, as of this date there exists no way in which my infected system can be completely cleansed of every trace of the scourge, luckily, there are steps that I can take to help ensure and maintain a positive outlook and to help things run a little smoother.

#1. A Sense Of Humor….I find to be an invaluable first line of defense. Laughter is something that I can control...not Ataxia, but me. My attitude is that I will keep poking fun at the scourge, and when he has had enough, he knows where the door is. I’m hoping that he will get fed up and leave. This wouldn’t hurt my feelings.

#2. A Proper And Realistic Understanding Of Who I Am….in a lot of ways, I am the same person that I was before the scourge found me. Sure, I’m older, wiser, and just a wee bit more mature….but my basic personality is the same. I still have the same emotions….I still like the same foods, have the same desires, have the same capacities to show love, compassion, and to extend friendship. The bottom-left here is that the scourge will change all of us physically, but it also will go after and try to change us at the very core of who we are. It didn’t need my permission to infect me physically….but in every other area, it does need my consent. Sorry...but I’m not giving it.

#3 Actively Giving And Seeking Support….I believe that we were not created to isolate ourselves but to share ourselves with others...and dealing with the scourge certainly falls within this belief. I didn’t move in any significant way towards a positive life lived in the midst of Ataxia until I sought out other people whose struggles were like mine. There is a strength that comes from sharing our frustrations and victories with others, and hearing theirs. We can learn about ourselves, and see truths about dealing with our personal Ataxia that we may have never seen before….and probably wouldn’t have come to on our own. I embrace the support as being a necessary part of who I am.

#4 Being Honest With Myself And Others About Every Part Of Me….One of the lessons that I learned along time ago is that denying the existence of my Ataxia was not helpful. Doing so was not reducing the problem, but only magnifying it. I discovered that I needed to give myself permission to be me….in the area of the scourge. This may sound obvious to some people…..because really, who else was I going to be? But, if you are dealing with the scourge like I am...or any other personal thorn that’s wormed its way into your system….then hopefully, you’ve come to understand like I have that we don’t get to pick and choose what baggage in life that we have to drag around with us. These things want to weigh us down and hopefully, stop us from making any more forward progress. I found that the best way to combat the scourge that introduced itself into my life was to deny it the power to stop me or shape my outlook on life. (By the way, a thought just occurred to me that if the scourge is really baggage….then I am going to check it the next time I fly anywhere...and then hope that for once the airline loses my luggage)!

Anyway, those few examples are some of the ways, that for me, work to help keep the scourge at bay. I would really like to hear from others about those things that you find helpful….so please leave a comment

...And Yet, Another Winter's Battle In The Cold War

    Here is the link to the audio version of my latest blog: https://youtu.be/APWPCRe3FSI

     With Ataxia, there exists nothing that will knock me off my feet quicker than an ill-timed wrenching cough.....which is better know as the dreaded kamikaze-cough. The diabolical little enemy will swoop in silently, in an attempt to try and catch me totally unaware. If I am not able to reach out and grasp something solid to anchor myself to in about a nano-second, then all is lost. The surprise coughing raid was a success, and as the coughing spree flees the battlefield and the latest devastation that it has reeked upon me, I am left crumpled on the ground in a burning heap. Sometimes, during a severe cold, the ruthless little enemy will circle around and hit me again with another round of racking coughs before I have even had time to assess the damage done from the first wave. Talk about taking advantage of a situation and hitting a man when he is already down...

     The common cold doesn't just limit itself to only one weapon, though. It will also use the sneeze, often with excessive frequency, trying to knock me down and keep me off my feet. Although another favored attack in the cold war, the sneeze-maneuver is considered to be slightly less efficient in the realm of sneak attacks because it will pre-announce its impending arrival. Often the warning will be only half a second, but almost always, this advance notice will provide me with just enough time to batten down the hatches. Of course, the sneeze makes up for the slight shortfall in sneakiness, with its sheer ferocity, and the multiple attacks of its delivery.

     Being rather unstable on my feet anyway (thanks, Ataxia)... what I would find to be helpful in these situations would be a backpack that held a heavy metal anchor...one that could be instantly released onto the ground via a door on the bottom of the pack. The weight would be attached to a thick steel chain (the chain would also be very rusty...therefore making it more realistic). This system might actually serve a dual purpose...the extra bulk may help my balance, and it would also allow me to "drop anchor" at any time, thereby stabilizing myself, and significantly reducing the damage done by coughing or sneezing attacks.

     As if being constantly vigilant for sneak attacks by coughing, and frequent sneezing wasn't enough, the cold war comes with some other goodies....like the ever popular nasal congestion. The endless need to blow my nose is bad enough, but the continual necessity to be seated, or to hold on to something first, is really putting a limit on what I can do. It has been said before that some people find it challenging to walk and chew gum at the same time. Well...I am hard pressed to be able to blow my nose and walk at the same time! Between waves of coughing, sneezing, and frequent nose blowing.....I spend most of my time in my recliner.

     For someone who already slurs his words (I find it continually challenging to portray my deep sense of overwhelming debt to Ataxia)...I find the cold to bring with it a further impediment to clear and precise speech. Because of the congestion, my cursive speech will now have noticeably more of a dramatic flair to all the loops, swirls, and overall general flow (refer to the last blog for a definition of cursive speech).

     The cold will soon have run its course though, and I will once again be free from the germ warfare of the cold war for a while....that is, until next winter's campaign.

And Then I Went On To Say....

   After posting my last blog, which was a compilation of some previous quotes and pictures from previous writings, I decided to do a follow up. This blog contains more samples of things that I wrote in previous blogs, and again, I am including some pictures that I had used in some of those past writings. Hope you enjoy......

                                    ....................................................................................  

   There have been times when I will get the sudden impression that I can run, or at least jog slowly. I used to be a runner, it shouldn't be too hard, my leg muscles should remember this and know what to do, right? Uh, yeah, they're like, "What's this thing called.....running? Nope, sorry, don't believe we've ever heard of it before or ever had the pleasure."

     I suppose it is a good thing that I never aspired to run off with the circus as a kid, although I probably could have had a lucrative career as Clumsy The Clown, where everything I try ends up in an epic comedic disaster.

     For example, is it so crazy to want to simply get out of bed at three a.m. to check the plumbing in the bathroom without the drama of shaky legs, and feeling like I am trying to stay on my feet in a ninety-mile an hour cross wind? 

     Apparently, there is a smaller office behind the main mind's office that is a control room of sorts. The way it was explained to me is that the job of this little office is to translate orders from the main office, and then to send them out as mandates to the other departments. The problem that has developed is that the person in charge of the little office and ensuring that it runs smoothly has become unstable and highly unreliable. He calls in sick half the time, and when he does show up....well, he's not all there if you know what I mean. The lights are on but nobody's home. And I can't fire him. Believe me, I've looked into it but he 's got some kind of iron-clad contract. I don't know, it all seems like internal politics to me. 

    I never received any external summons, but thirteen years ago at the age of thirty-eight, I did accept delivery of an internal call to a version of Mission Impossible, named Ataxia Impossible. Actually, I didn't so much as accept the delivery as I had it thrust upon me, and over these last few years, it has been like watching a movie.   

     Cords are another thing that I have issues with.  If they are not jumping up off the floor to try and trip me as I am walking by, or stepping over them, they are forever wrapping themselves around my ankles. I really don't understand their problem because I treat them nicely. I never harshly yank them out of the wall sockets or use them for a quick pick-up game of jump rope. 

     The Venetian Stairs.- Stairways everywhere, in every part of the world, would be required to be fitted to have this capability. The idea would be that every stairway would have a rod at the top and one at the bottom that could be accessed by a handicapped person and twisted so that the stairs would fold flat, like window shades, and become a ramp. Not a bad idea, huh? There should be an official watch group set up to go around and identify all the public hazards that are caused by stairs. Maybe I should form a group, named, Be Aware, Don't Forget Ataxians Living Life, or B.A.D. F.A.L.L. for short.

     I know now that food packaging which claims to be, "easy-seal", is lying.  It is most definitely not truth in advertising.... at least for me it isn't.  I will waste somewhere between two minutes and a entire month just trying to get the two sides of the bag to line up and....interlock, mesh, grab a hold of each other and form a bond....to do something, ANYTHING that will resemble that the two so-called self-sealing sides are working together as a team!

.....a-not-so-distant time when I could walk straight without appearing as if I were trying out for a position on the latest dance-related reality show or to be an extra in an earthquake disaster movie. A time when I could chew and swallow without the need to update my Life Insurance Policy beforehand, when I could descend stairs or step off a curb without the need to first anchor a repelling rope, prior to my descent down the four or five-inch sheer cement wall. And, yes, even a time when I could mix myself a simple tuna spread for lunch without first having the need to rent a small cement mixer to contain the mess made by mixing a 4 ounce can of fish with mayonnaise. There were so many simple things that I did in my life that I never had to think about, or that I ever needed to stop and contemplate beforehand.


     I might be sleeping peacefully, when out of nowhere, wham! A kamikaze leg cramp will decide that it is zero hour, and time to strike. I might be drinking my morning coffee, and suddenly, just like that, kablam! My throat decides to close up shop, puts up the sign that reads, "Be Back In Ten Minutes", and goes on a break. I know my throat doesn't smoke, so maybe it went to take a coffee break? Wouldn't THAT be ironic? Or, I might be walking on flat ground, when my legs will just decide that they have had enough of my feet, always having to lift them up. "We're tired of always being the ones to carry their weight, why can't they take care of themselves for a while?" (By the way, this really is how my legs talk, I heard them once....it was the same day I heard my money say goodbye.)

     I start the day off, in a very similar fashion I suspect that most of you do, by waking up. Right away I start my day off on a positive note, as I have already accomplished the first goal that I have set for myself. 

.....in the present, I DO think of Dominoes every time I reach into a cupboard, attempt to put something away or reach into the refrigerator. I am not making this up when I say that sometimes, what should have taken me seconds, now takes me minutes because of all the things that tumble out of the cupboard or that fall off of the counter when I reach for something else.

.....there is a large benefit that has come into my life because of my current Neurological situation. Hand-holding. Lot's of hand-holding, and other forms of physical contact. 

     I would also find it immensely helpful if my SCA would put just a little more effort into working with me. I mean, really, how hard could this be? It seems like such a small request to me. It's already there, re-shaping my Cerebellum and adding a bunch of weird side effects. It seems to me that it would be a small thing if it could throw in a helpful symptom once in awhile.

    The panic would first take a firm grip on my young mind when I heard from the adult authority in my classroom that the test would require the use of a number two pencil. This statement was said with such surety, and in a commanding voice, that I was utterly convinced that if I had anything but the required number two, say even a pencil that was a two-point-one, that I would fail in every aspect of life from this point on.

    Lately I have begun to envision that there is a highly contagious, and rampant neurological disease spreading around the globe that has been tagged as the Upright-Bug. Symptoms manifested by the infected are perfect balance, clear speech, and the ability to eat without spilling or choking. There are several different manifestations, and groups, that are resistant to the virus, and these people have come to be known as handicapped, or uniquely gifted.

    Just once I would like to walk to my recliner or the bathroom at night without Ataxia tagging along. But it really doesn't matter how silent I am, (or think I am), Because the second I even open my eyes, there he is, staring at me like he has been watching me sleep, just waiting for me to wake up, and is now ready for anything. "What are you doing? Where are you going? I better come with you....." Ugggggghh, I can't make him stop! GPS units have nothing on Ataxia, he is the ultimate stalker.  

    However, lately, I have come to refer to "it" as a "him". This is because in my last blog, giving him his own persona is how I associated with my handicap. It struck me the other day that even the vilest of criminals and villains have names, and so it only seemed appropriate for my personal Neurological-thorn to have one too. And once that was decided, I really took the task seriously. I pondered, I paced, I meditated, I wanted a name that would perfectly sum up his persona in one simple phrase. I enumerated, struggled mentally, and reached for a perfect name...and then, three seconds later I landed on the name Brutus the Crippler or The Crip for short. He really hates when I call him that, but it seemed fitting. The guy's an animal, a brute with absolutely no compassion.

    An example of this kind of system would be, to only order, say, the Guacamole Burger when I am wearing a green shirt. This way I can walk out of the establishment with my head held high, and not resemble someone who has just spent a month engaged in a high-intensity food fight. 

   I don't know much, but one thing I do know is that over the years I haven't always done the best job with being able to immediately handle the changes that have come barging rather rudely into my life.  I usually land somewhere in the middle of a sliding scale comprised of kicking-and-screaming on one end, and an epic temper tantrum on the other.  

    I really don't want to brag, but it only took me thirteen years to discover that I can't just jump up out of my seat and rush somewhere when any old thought or mood strikes me. Those days are also long gone, and now I need to stand up slowly, while holding on to something, (something other than myself, because that just wouldn't be of any help), and just stand...frozen until I am confident enough to step forward, being sure that my legs will stand-up in their duty to support me.

    I am finding that there seems to be a connection between my diagnosis of SCA and my struggled attempts to find any kind of synchronized rhythms or patterns. The mere act of bringing my two hands together more than twice in a coordinated clap is proving to be a real challenge. Often it appears more to be the swatting away of imaginary spider webs.

....at a party, I wouldn't introduce the obvious elephant in the room as,"a close and personal friend of mine". He showed up at my door one day, (Ataxia), thirteen years ago.....just like that, not even a phone call, a text, a letter, a fax, a tweet, or even a smoke signal first to announce his impending arrival, and decided that he liked it so much here that he has no plans to ever leave my side......lucky me".

    I even use more effort than necessary when sliding the shower curtain closed. If it was possible to make a loud crashing sound when a plastic shower curtain was being closed, then I would most definitely be the one to make it happen! Luckily for me, my shower curtain doesn't shatter like glass, or we might be having a different conversation right now, probably something along the lines of being more.....uh, medical in nature, if you follow me.

    I have considered before trying to sell him at a yard sale....but even with a drastically reduced price (in which I don't come close to breaking even but actually losing money), I'd still wind up being stuck with him for the remainder of this life. Even a good ol'fashioned unsuspecting buyer wouldn't be able to see themselves owning an SCA.

    Do you think that if I requested The Police's Don't Stand So Close To Me, that Ataxia would get the idea that I need some personal space?

    I walk around my house all day feeling like I am trapped within a giant Pinball venue, and all that is missing is the large scoreboard that tallies the growing score, with the sound of the constant beeps and whistles.

    Either one type of day will be dominate and be the only one to show...like dropping EVERYTHING, constantly stumbling, and continually walking into objects. Or the other reality will present itself...where I fall, stumble, and walk into stuff only HALF the time...which is also known as a good day.

    While laying on my back in the driveway, having just finished a grand fall backward, I realized that I don't know my neighbors very well. They seem to be good people, but at that moment I realized they are not anything like the good people at State Farm....who, by the way, were not there. ( Take a second, it will come to you.) 

But, This Is What I Said....

    As I’ve said before, I prefer to think of my Neurological Disease, regarding how it has affected my life, in positive ways rather than negative. For example, through NO effort on my part, I am now bilingual. What I have referred to in the past as, "Cursive-Speech," may not be a dialect that is currently recognized the world over as an official language. Nor is it one that is tied to any particular ethnic group. However, the fact remains that with each passing day, I am becoming more and more fluent.

I was thinking the other day about all of the different ways, and the inventions over the last 3 and a half years that I have written about in the blog known as, My Life- A Journey, With Ataxia Along For The Ride. With this in mind, I thought that I would go back to those previous writings and pull a few quotes out for your enjoyment, along with a few prior pictures as well. This will in some ways be like the greatest hits...but in no way will it include everything, just a few of my favorites...beginning with the above reference to an Ataxia dialect....
.....................................................


.....Could slurred speech please be recognized as a second language? Maybe it could be called Cursive-Speech, you know, since Cursive's brief association with that whole writing stint appears to be done now. No one even uses it anymore....and the ancient art of Cursive writing is just sitting there...up on the shelf! It is only gathering dust...so why can't we reassign it to the area of speech and make it usefull again? That way I could be bilingual, as Ataxia already seems to come equipped with this ability.....Unless I hear that there are any objections, (and I can't hear anyone speaking up right now), then I am going to go ahead and refer to slurring as Cursive-speech. It just sounds more sophisticated than slurring, which is something you do when you're drunk. I'm not.

.....When I was diagnosed with Ataxia at 38, the old half-burned-out light bulb that is my memories, flickered and sputtered...and then 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.

.....Another example of the new 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 2-year-old who is always putting things in his mouth and/or inserting objects into the outlets, I am constantly prodding, poking and inserting things that were never intended to go into 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.

....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

....  So, what’s the bottom line, you ask? The bottom line is that I don’t recall ever ASKING for my life to go this way. What’s it like? It’s a lot like answering your front door to find the Publisher’s Clearing House Prize Team. Through streamers, confetti, and general fanfare, they declare in a very enthusiastic shout that it is your lucky day, your ship has finally come in. You, of course, are a little excited, but at the same time, a bit nervous as well and wondering if this is indeed happening. You are then informed that, although your ship has indeed arrived, it is a patched up rubber raft.

.....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. 

.....I used to enjoy being able to sneak into the kitchen and get a snack without alerting everyone in the house or the next door neighbors. In and out without a trace, and I could enjoy that second or eighth cookie without tripping the alarm. Now I bang into everything, drop most stuff multiple times, and generally cause such a calamity that it would have been quieter to shout, "I'm going to be a pig and have a second bowl of ice cream"!

.....Ataxia showed up in my life like a loud, obnoxious party crasher. It barged its way in, interrupting the peaceful proceedings, appearing to be already half drunk like it was just gracing my festivities after having previously been at a different event.

.....Through the vision of fantasy I approach a problem as confidently as James Bond, but through the haze of reality I fumble and flap around like PeeWee Herman.

.....I am seriously thinking of opening up a restaurant that I would name Che'SpaZtic's. The theme would be, Where friends are always welcome, and the food is always flying!

.....I'm thinking of opening my own gym, after the highly successful restaurant that I wrote about in a previous blog, Che'SpaZtics, is up and running of course. There I would teach a form of Martial Arts that I will call Attack-Cia Karate. I would practice this form out in public, and I can imagine that the comments may be heard as something like this, "Daddy, look at that funny man, it appears as if he's having a seizure as he walks down the sidewalk." "No son I heard about this, I think he's practicing a new form of handicapped Karate."

.....Sometimes, not all the time, but sometimes my Ataxia can feel like an annoying acquaintance who is constantly bumming something off me. If I go anywhere, it is always there to ask if I would mind giving it a ride? " Hey can you swing me by....?, or,"Would you mind....? Honestly, I feel like shouting, " YES I WOULD MIND, WOULD YOU PLEASE,  PLEASE FOR THE LOVE OF ALL THAT'S DEAR, JUST FOR ONCE, LEAVE ME ALONE"!?

.....It seems to me that if one of these fast food chains wanted to really make a great happy meal that they should include a new Cerebellum with each order instead of a toy. At least make it an option!

.....Going in to see a Neurologist is, in a lot of ways, like taking your car to the mechanics. You can't just give the mechanic your car key and say, "The car won't go." They need specifics, something along the lines of, "I'm starting to backfire and stutter....uh, I mean the car's exhaust is starting to backfire and stutter when I creep along or go slower than 5 miles an hour....

.....There are a few things in my life, I have come to realize, that are incredibly consistent. One of which is the invitations to do bodily harm that I receive from gravity.  I keep trying my best to ignore its hospitality, but it never seems to be discouraged, relentlessly sending out invites every day.

.....At least, as of the current date, I haven't located any little portholes, like behind my ear, that I can stick a bent paper clip into and have my balance put back to factory specifications. Nor have I yet to discover any combination of movements or body manipulations, like sticking out my tongue while squeezing my nose, that will enable me to speak clearly.

.....Writing has become an issue, but I don't believe that it is my fault. I think my penmanship is perfect and that I am a victim of a systematic plot to make me look incompetent. I believe that all pens and pencils have small identification sensors in them that allow them to know exactly who has picked them up and is trying to use them. They then have the power, through internal programming, to write illegibly. I mean, how else would you explain the fact that my brain is telling my hand, in exact detail, what to write or draw and it just can't seem to do it.

.....One year later, although I still have cat-like reflexes, the rest of the story is that, sure, they continue to be cat-like....but it's a cat that has gotten into some fermented catnip, has already burned through eight of its nine lives, and is halfway through the last one.

.....I am, however, in endless competition with myself, and as such, wondered what it would be like to execute simple household chores while being timed. I could then strive to break my own record, while enthusiastic sports commentators would be delivering a blow by blow account of the frenzied action. And when I say, "frenzied action," think half-frozen molasses being poured through a pin hole.

.....Ever since the official diagnosis of my physical disability, I feel as if I have been engaged in a massive wrestling match. A contest where I face a huge opponent, and I am seriously and woefully ill-prepared, out-matched, and generally viewed as the underdog's underdog.


.....I'm really not sure how this keeps happening, but my working theory is that something, or somebody, is adding minute amounts of weight to my shoes every night. I have been noticing over the course of the last year or so that it is becoming more and more difficult to lift my feet when walking, and this causes a shuffling, which brings about a falling.

.....If at first, you don't succeed.....and if you have Ataxia you probably won't. At least that seems to be the case with me. In fact, I was, and have been thinking, that it would be nice if I could simply skip the first, second, third, and most likely the fourth attempt and go straight to the final act of accomplishment.

     Well, there you go.....just a few of the things that have been part of my writings over the last three to four years. There are much more...and who knows...I may submit another blog like this one. Let me know what you think.

That's What They Say, Anyway.

  Here is the audio version of this blog: www.youtube.com/watch?v=n02BNlJF-Qc   

     As I tripped and fell the other day, for perhaps what could be the thousandth time, I had a moment to reflect before I hit the ground. In that brief second, three things occurred to me. For one, I realized that I was, at this exact moment, currently engaged in what could very well be a spectacular anniversary of falling. The second thing to quickly present itself was that if this fall is indeed an anniversary fall, then maybe I should be celebrating the milestone in one way or another. My third reflection surrounded the notion that falling seems to be coming much more naturally for me, and now seems to obtain a certain graceful fluidity to it... while other people seem to really have to work at it. As I fell, I also began to have all of the catchy little advertising phrases, helpful limericks, and musical jingles that we hear, cycle through my mind.

     I am not the kind of man that feels comfortable wearing pink.... nor do I see myself bearing any resemblance to the Energizer Bunny. Maybe, I thought, if the bunny was wearing a Timex Watch...and this leads me to think about the familiar slogan.... where the little bunny would now be able to take a licking and yet continue to go on ticking. In my mind, this familiar little jingle was changed to a saying that would better fit my Ataxia. One that would instead go something like this, ".....takes a licking and keeps on bounce'n.....off walls.... floors.... the ground, etc... etc."

    While laying on my back in the driveway, having just finished a grand fall backward, I realized that I don't know my neighbors very well. They seem to be good people, but at that moment I realized they are not anything like the good people at State Farm....who, by the way, were not there. ( Take a second, it will come to you.) But, lest you think that I am only going to pick on the good neighborly people at State Farm, I should also mention that the good hands of Allstate were also not anywhere to be found. Of course, this could entirely be a reflection of the fact that I do not have a current policy with them. Nonetheless, the jingle that I have heard since infancy was not enough to keep me from striking my unattended target.

     My journey with Ataxia has also significantly reversed the order of how some things now progress throughout the day. An example of this kind of event lays within the saying which states that what goes up, must come down. For me, this statement has become, what goes down must once again get back up. I suppose, though, that one could argue the validity of this. Because in order for me to fall down I had to first stand up, which would prove the original statement as true. However, it can also be argued that in order for me to stand up I would first need to fall down....or else, what would I be standing up from? I'd already be standing, wouldn't I? It's a bit of the whole chicken and the egg thing. Best to not think about it too much, but just accept it on faith.

     While I am on the subject of the chicken and the egg, and which one came first...my days are filled with similar questions. Only I am plagued with questions like, which came first; the stumbling or the spill? The good intentions that I had, or the huge mess that I left in my wake? The misstep, or the Ataxia river dance? I suppose that the answers to these questions of mine don't really matter...as the prequel and the main event seem to always go together, and appear at times to even be interchangeable.

     I could keep going with making correlations between many more quaint little sayings and quips that we all know. Instead, I am going to leave you with my thoughts on just one more. The saying goes that all that begins well, ends well. Physically? For me? Uhhhh....no, this would NOT be the case. However, I do not think that this phrase is referring to the physical alone. Mostly, I believe that it is referring to an attitude....more specifically, my mental and spiritual outlook and state of being. Yes, I experience physical trials, disasters, and frustrations throughout my day...but I have learned that these things have absolutely no control over my will. My ability to love, laugh, enjoy loved ones, and to share myself with others is not, or will it ever be, tainted by Ataxia.

   Like the reflections on the river that I am standing next to, the outlook that we have, and the attitude of our heart, is a reflection of us. Ataxia is only a physical symptom...do not let it become a reflection of who you really are.