Tuesday, July 23, 2019

Run-On Memories....

     The young man at-bat had quite soundly connected with the fastpitch, and I watched him seemingly fly around first base, on his way to second. Impressed, I remarked that he was a very swift and surefooted runner. If memory serves, (a statement that is becoming more and more of a vague certainty), I had never before experienced the level of velocity that I was witnessing.  I tried to imagine what it would be like to run as effortlessly as the athlete on the ball field. However, with a sudden jolt of finality, I realized that I could no longer remember what it feels like to run at all...effortlessly or otherwise.
   
     Yes...of course...I remember the act of actually running. Fleeing a scene, scurring in a blind panic from the wrath of older brothers, or chasing after a departing school bus in full-throated desperation. These are but a few of some very fine examples. Years ago, I also ran with a small group of other twenty-plus-year-olds as we trained and prepared ourselves to run in the annual Portland Marathon. We never did participate in the event, reaching twelve miles in our training and then, just as suddenly, losing interest. Why we didn't continue, I can't remember. Although I never did participate in a marathon, I continued with my daily runs. That, however, seems to be a lifetime ago...back before Ataxia put the brakes on.

     Speaking of putting the brakes on...I have several fond, and not-so-fond, memories of riding a two-wheeled bike when I was a kid. Fond memories included the days of attaching stiff playing cards or sports cards to the spokes of my purple banana-seated stingray bicycle. I loved doing this when I rode around because I felt supremely cool. Of course, I'm sure that everyone who observed me thought I was riding a huge, mean motorbike.

     I'd love to re-live those carefree biker days....by placing cards in the wheels of my walker. Alas, the wheels are solid....not an open design with spokes.  I can only suppose that they are made this way in an attempt to dissuade gangs of older people at retirement homes roaming the halls with cards in their wheels. Soon biker clubs might begin to make an appearance in the homes...as the sound of Harley's continuously ran up and down the passages.

     A few of the not-so-fond memories include accidentally squeezing the front brakes instead of the back brakes. Braking of this nature resulted in an instant rising of the back of the bike. Which, in turn, would transfer into a quick Superman-like dive over the handlebars. Another "non-fond" memory involved running headlong into immovable objects, such as a curb, or a wall. At this point, I suddenly would find myself being propelled forward off of my bike seat. With both feet still planted on the pedals...I would come down hard to perform a random spot-check of the strength and integrity of the bike frame. Although I never saw these spontaneous quality control checks to be enjoyable...knowing that I was mounted on a sturdy craft gave me the boost of confidence needed. After all, I would be taking my bike over the makeshift ramps that all the neighborhood kids had set up in our backyard. Structures of excellent build quality and construction that we had so carefully slapped together out of whatever odd-sized scraps of wood we could find lying around. There were possibly four to five summers when my vocabulary consisted of, " what's for dinner?...can I go?...and, " I think we could make a ramp outta that!"

     We were forever designing and building new ways to gain precious seconds of air time. Of course, the ramps that were made by the ten-to-fourteen-year-old professionals lacked any form of inspection for general safety. Neither were there checks for stable working conditions or the well-being of the kid going over the said ramp. Also unheard of was safety gear of any kind...for two distinct reasons. One was that any safety equipment only added unnecessary weight and drag that would slow a rider who wanted every bit of speed possible. EVERYTHING...from a helmet to extra padding in your clothes was off-limits. Everyone knew the risks...and clearly understood that they were running the possibility of a young death...severe pain...or worse of all, looking like a wimp to any neighborhood girl that happened by.




     The presence of a single square of two-ply bathroom tissue anywhere on your person was grounds for scrubbing the jump. If this happened, you might also discover that your, "backyard ramp- jumping/disregard for the sanctity of your own life," privileges were now under serious threat of being revoked. No one wanted to return to the halls of middle school with the shame of having just spent a jumperless summer because of a vagrant rule infraction.

     The second reason that safety equipment was not worn...was because it wasn't needed. Thinking that it possibly might be was unfathomable...end of the story.

     When the televised antics of motorcycle stuntman Evel Knievel came to the forefront of our notice...well, our style began to change. Suddenly we saw the possibilities of a second ramp...this second quality structure being for the triumphant landing. In the long run, it didn't quite work as envisioned...and for that, I'm glad. Had it been a success I'm sure that the next logical step would've been to line up a few derelict school buses between the ramps. At the very least, it would've been politely suggested that several friends and I lay down between the two ramps, while one of my older brothers flew over us on his bike.

     There was no scientific reasoning behind the placement of the second ramp or the distance from the first ramp, (known in pro circles as the launching-point), other than a non-committal shrug of the shoulders, and a muttered, "looks 'bout right." It was then kindly, and democratically, decided that one of my brothers should attempt the first jump. It was also determined that the two ramps should be moved to the far end of the gravel driveway...allowing for my brother to enter the jump zone at full velocity and not lose precious speed by the drag of the grass in the yard. The only drawback any of us could see was the possibility that attempting the jump on a gravel driveway could...just possibly... increase the pain index of an unsuccessful touchdown. Again, however, as none of us planned to crash, this notion was quickly set aside.

     Like the failed attempt at jumping the Grand Canyon by Evel Knievel in nineteen-seventy-four...my brother's jump ended our two-ramp dreams. As we watched him approach the launching-point...pedaling fiercely, with a grim determination on his face...we collectively held our breath. We watched him as he hit the first ramp...we watched as he shot into the air...and we watched as he came down short by several feet of the second ramp. The front of the bike came down first and plowed into the ramp...and as we watched my brother begin to unceremoniously roll in the driveway...I knew that two things were now showing themselves to be painfully obvious. First, our days of ramp jumping were drawing to a close...and secondly, our quickly disregarded theory about the effects of gravel in the event of a crash was uncannily accurate.

     To bring this back around to running...the ability to do so proved to be beneficial for me that day...as I went into a full-on panic mode and ran screaming for help. This story from my childhood returns me to my original point, which was...that I remember running...I just don't recall how actual running feels.

     How does this help...or relate to Ataxia. I was thinking about how easy it is for us that have lost abilities to become negatively focused on those losses. I find though that letting memories become a joyful thing in my life...instead of negative ones that serve to only accentuate the losses...helps me to face the present in a positive way. It is not always possible...or easy...but I try to see "lost abilities" as opportunities to share memories from days past. Besides...I find that I no longer desire to jump a purple-banana seated stingray bike in the driveway!

     Thank you for letting me share this one with you.

Monday, April 8, 2019

Forever Scarred....A Simple Update

     "Well, that's going to leave a mark!" And indeed, an MRI look-see at my Cerebellum in 2003 which confirmed the diagnosis....showing that Cerebellar Ataxia had left it's ugly mark then and continues leaving physical markers now...like pushpins in a map. For the first 14 years or so, I had an unknown form of SCA....but because I wanted a number like it seemed everyone else had, I decided to designate one and apply it to myself. For a while, I jokingly told others that I had SCA 24/7.

    Recent genetic testing has, however, upgraded me into a different category...a much more rare form labeled SCAR. Actually, my exact diagnosis is SCAR 8.....which to my understanding is a Recessive Autoimmune form of SCA. It has to do with the SYNE1 Gene.....which I still don't know if it is pronounced SIGN1 or SIN1, although the latter pronunciation would get my vote! Whatever the case, it would seem that all my earlier marks have now left me permanently SCARred.

     The recent change, or update to my diagnosis, will have no negative bearing on my forward movement...but I will steadfastly continue to point to the future!


Friday, March 8, 2019

A Question Of Dexterity.....

    The last official Blog that I had written and posted...titled, The Two-Pronged Security Breach....was almost 2 years ago. I then decided to take a break from writing and instead post each chapter of the book...The Last Laugh...which I had written over the previous summer. There are also printed copies of this book which come with some extra material. I have been asked on several occasions in the 2 years since I have stopped writing if I intend to continue the Blog...or to write another book...something along the line of, Ok I Was Mistaken, THIS Is The Last Laugh!

    When asked this question, my response was always...."I don't think so because I believe I have said all I that want to say on the subject". I felt it was time to move on to other projects. What I have since discovered...is that for the very first time in my short 54 years I underestimated the situation (if you believe that then you and I will get along just fine). Instead, what I have discovered, to my delight...is that there is still plenty of fuel in the creative tank.

    I am still draggin' the unwanted guest Ataxia around for a ride...because, after all, it's my life, not his. So, I would love to present you with the next installment...a few thoughts I had, titled...A Question of Dexterity....hope you enjoy it.

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   The question of hand-orientation can be a difficult and perplexing concept to fully grasp. I have made the choice of which hand to use much easier for myself.....by creating a simple little rhyming jingle. I sing it whenever I am confused...and I will share it with you. Feel free to use the song whenever you may find it to be helpful. It goes like this...
                                                     Left hand....Right hand,
                                                            it really doesn't matter....
                                                            cuz neither one can.
                                                     Right hand...Left hand,
                                                            can't be hold'n nothin....
                                                            everything falls through...
                                                            may as well be clutchin' sand.

    I didn't put any musical notes with it...for the purpose of allowing the song to be sung in anyone's preferred musical style. Personally, I was going through kind of an adult contempo-fairytale phase when the limerick started dancing in my head. You should know though that you can put it to any kind of music you want. Do you like Icelandic speed metal? Country music, or Opera maybe?  Whatever fits your style...

    Growing up I was always strongly right-handed. In fact, my left side has always been noticeably weaker...both in strength, grip...and overall balance. One side was good(right), and one side was weak(left)....like I was some kind of ataxian-halfbreed. However, I always admired those who were ambidextrous...and was forever trying tasks with my left hand...simple things performed with my right hand, like brushing my teeth, throwing a rock, baseball or hand grenade, or writing my name. These attempts were all failures of course...and thus, I remained firmly right-handed.

    As with the general loss of balance, I never fully realized the privilege that it was to be "handed" at all...until, of course, the infamous day that it all waved goodbye. Ataxia has brought many things with it...being the equal opportunity personal and social action that it is...and I no longer have to think about which hand is the most reliable. The dream of ever becoming ambidextrous...easily switching routine tasks from right/left and back to right again...has now become a life of ataxia-dextrous. A world in which anything....at any time...whether in the right or left hand...can be bobbled and dropped. Sort of a frantic juggling, if you will. Ataxia also brings a new definition to being viewed as a person who takes a general "underhanded" approach to life.

    The general loss of dexterity may not be "hands-down" the worst byproduct of SCA...but neither does it deserve any clapping or applause. And while I'm on the subject of clapping...my attempts look more like the shewing away of 2 flies...like I am directing fly traffic...as if I'm telling the flies, "you go to the left and you go to the right". Really, all I need is some runway attendants' flashlights.

    I would never make a good criminal...I think this is largely due to the fact that I wouldn't be able to write a ransom note or leave any written taunts and little clues. I think that the loss of writing has been the hardest for me. Not to be able to take notes at a meeting...fill out and sign a simple restaurant check....or make a list of unreasonable criminal demands. Like...I want all Kale removed from grocery store produce departments...go, you have 30 minutes!  Speaking of life on the other side of the law...I've also said before that the other thing I couldn't do anymore is to serve as a getaway driver. I no longer possess a driver's license...and I wouldn't want to get caught fleeing a crime scene... without the legal permission to drive a car. I could get into some serious trouble. I might receive a ticket...or get sent to traffic school, and that wouldn't be very......wait for it.....handy!

    Ataxia has also given to me some amazing sleight of hand abilities....the gift to make little things suddenly disappear. People ask all the time how I do it...and I don't mind revealing the mechanics behind the illusion either. I always start off with..."see, the first thing you wanna do is get a Neurological disease or condition, either one will work for this trick....."