Wham, Kablam, And Kerslam!

here is a link to the audio version, in case you would rather listen to this blog:https://youtu.be/hnQw71fHidU

Life with Ataxia, for me, can often seem to be a life lived in the middle of an anything-goes, let's-pick-on-the-little-guy, free-for-all, target practice....just like the ones that I experienced during my childhood. It was not uncommon to find myself being bombarded by pine-cones, water balloons, rocks, little green apples, handfuls of berries, dirt clods, dried cow pies, rubber bands, dirty underwear, golf balls, or shoes. A time when any one of these items, a combination of these, or any other fly-worthy object, would approach my innocent self at a high velocity (for I had done NOTHING to provoke this kind of response). I would just be walking along, COMPLETELY minding my own business, not bothering anyone, when suddenly wham! Something would fly out of the blue and dramatically collide with my person, often in a very painful way. Usually I would know better than to return fire because the outcome of trying to retaliate would only cause the rain of terror to increase in speed, volume, and accuracy. I spent a lot of time in my childhood playing Bob-n-Weave. It was not a game I found to be enjoyable. I even had a pitchfork thrown at me once, (read Once, I Was A Child, blog number 31, for the whole story).

I compare my life with Ataxia like to a game of Bob-n-Weave because there are times when I can see myself, placed right back in my younger days, with foreign objects flying at me from every which-way, seemingly from out of the blue. Only, now the items are not things from my childhood, like dodge-balls, or dirt-clods. These were objects that were thrown at me by someone else. Never once were my injuries from air-born foreign objects self-inflicted, nor do I remember ever being tempted for them to be. And even though I may not be tempted now.....no, let me rephrase that, I am definitely not tempted in any way, but my body apparently has different ideas. 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). Anyway, because the legs do this, the feet will be left on their own to move, and since they can't pull themselves up by their own bootstraps, they are left to inch along the ground. The point being that, kerslam! I find myself shuffling, lurching, and finally falling.

Sometimes the current game of Ataxian Bob-n-weave reminds me of a time in College when a few friends and I found ourselves in a faculty member's garage. Don't worry, there was nothing nefarious going on. One of the guys that I was hanging out with that day was dating a girl whose parents lived in the house that we were messing around in. We actually spent a lot of time there, eating their food, and watching their television. They were like second parents to me and didn't mind us hanging out there at all. Fact was they encouraged us, as was evidenced by their frequent question of,  "Why do you guys always want to come here?". See what I mean? They wanted us there. So anyway, back to the story, one day a few of us found ourselves in their garage. One guy finds a loaded air rifle, pumps it ten or eleven times, and fires it at a metal shelf. At this point, you need to know that the kid that shot the gun was currently a 4.0 student and at College on a scholarship. Well, the rest of us quickly went into the universal Bob-n-weave stance, because the speeding BB had now ricocheted off the metal cabinet and was bouncing around, and none of us wanted to get hit, (apparently they all knew the game of Bob-n Weave too...they must have played as kids, also). We were in a single car garage so there really wasn't many places to hide. After the initial shock wore off, (two to three seconds), we laughed, decided it was fun, and did it again. It was either this, or do some homework, so....

I say that my present condition reminds me of that stupid kid back in that single car garage. It reminds me because.....well.....because that WAS me, and because not only do I still do a version of the Ol' Bob-n-weave, but I can now empathize with the BB that was spit out of the barrel of that gun, only to smack into a hard-metal shelf, and then to spend the rest of it's short travels bouncing, and pinging off other surfaces. The BB that never got to be a part of the decision making process concerning it's movements, (I would tell people that I have B-B-Ataxia, but then it would sound like I am stuttering). Whenever I stumble, and can't seem to stop the forward motion because there seems to be an unseen force of air pushing me, I see my old friend from College days, as he gleefully and methodically pumps that air rifle.

Another story from my childhood that reminds me of my current situation happened when I was somewhere around the age of four or five, and my two older brothers would have been eight and nine. I don't really remember where we were going to go as a family, but Mom had dressed us three boys in matching sailor's suits. She had gone to great lengths to clean us all up and dress us in the white outfits. All she asked of my brothers and I was that we stay clean while she finished getting ready, and we waited for my Dad to get home. So we promptly headed innocently outside to play, where an argument quickly ensued between my brothers. Things quickly escalated to the oldest brother throwing dried, (and some not so dried) , cow-pies at the other brother, who was returning throw-for-throw with dirt-clods. I somehow ended up on the brother's side who was getting hit with cow-dung, and even though I had a wood pole to stand behind for protection, managed to get hit numerous times. We were a complete mess by the time the fight was over. My brothers then decided, that since I was the youngest and couldn't resist their combined force of will, that I should be the one to calmly explain what happened to our Mom. I do remember walking into the house, seeing the look of sheer, unbridled delight in my Mom's face, and saying, "Bob and Jon did it."Beyond that I truly don't recall anymore details. Major trauma at that point may have something to do with this. I just can't imagine that my Dad was very pleased when he came home and Mom told him what his three darling little boys' latest adventure had brought about.

I relate this story to my Ataxia, in much the same way as I do the story of the Air Rifle. Things get thrown at me, and even though I may be an innocent bystander, Ataxia is always there to inflict it's force of will on me. BUT like I have said before, AND will say again...Ataxia does not dictate who I am, what I think, touch or dampen my Spirit. These are just snapshots of memories from a past that made me who I am today. I will never hand my disability the victory. I will never surrender. Ataxia may win a few battles, but will never win the war. Be strong, my friends.

No, Really....I Meant To Do That

here is a link to the audio version, in case you would rather listen to this blog:www.youtube.com/watch?v=eLtspvylujc

I can remember quite vividly that there was a time when I did exactly what I meant to do. I know what you may be thinking at this point, but really, I am not making this up. I would make a decision to execute a certain task and actually get it done, most of the time it would even be done correctly. Now, stay with me here, because I know this next statement may seem to be stretching it just a little bit, BUT there were even times when I even acted without the need for any pre-meditation, or forethought, I guess you could say on pure reflex, or instinct. 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 a 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 from 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.

BUT, these are just a few of the struggles, or challenges, that are known by most of us who are currently living within the reality of Ataxia, or another form of physical handicap. Examples, or the memories from the past that can quickly spiral down into negativity, if we allow ourselves to dwell on them. However, if you know me or read my blogs, you know that I try not to go negative.....and I really really try to stay away from any "spiraling" these days, emotionally OR physically! In fact the word spiraling reminds me of tossing around a football, which in turn reminds me of younger days spent playing football. I would either play one-on-one with my big brother, (but really for me this game was closer in resemblance to a game that should be called Cream-ball) ,with neighborhood kids at the summer picnics,( again, also known as Cream-ball, as all the older and bigger kids from the neighborhood always seemed to whined up on the same team and all the younger and weaker kids would make up the opposing team), or I'd play a game with friends at sleepovers and birthday parties. Now days the only spiraling I do is on a team of one as I fall into my easy chair, (which, sadly, at times can also be called Cream-ball).

I don't know who this guy was....Melissa was trying to get a picture of the little Windmill and he just wandered right in!

Now that I have been struggling with my SCA for several years, it occurs to me that, what "I mean to do", is currently my new " Of course I meant to do that". That it is no longer about those things that I used to do without thinking, back before my body pulled a Benedict Arnold and betrayed me. I now try to think of everyday occurrences as being things which I really had meant to do to begin with. I meant to waddle like a duck and bang my shin into the furniture. I meant to poke myself in the eye when I shampooed my hair. I meant to do a human impression of a pinball when I walked through the crowded store, and I certainly MEANT to slur my words and appear as if I am under the influence.

So, okay, I am not being completely serious. I mean, come on, who enjoys being referred to as having the waddle of a duck? Alright, alright, I'll be serious. I know how frustrating it can be, how hurtful it is to be misunderstood. Let's face it friends, most of the time the general public does not know or even begin to have a understanding of what it is like to be betrayed by your own body in this way. I had never heard of Ataxia before my diagnosis. We really need to change this, and I am reminding myself here just as much as any of you when I say that we need to stop allowing the past to depress us and live in the new normal. Everyday brings some kind of new challenge into my life, and it can be a struggle for me to not wish for the past. When life wasn't the constant avoidance of a life-altering injury or huge pain in the..... But it is a choice that I make. I choose the positive instead of the negative. I am a much happier person because I made that choice, and invite you to join me.

Plus, you have to admit," I meant to do that", is a great way to approach every day struggles and frustrations. I find that if I set out right from the beginning, and mean to drop a lid 4 or 5 times before actually getting it to go back on a bottle, than I feel better knowing that I've successfully accomplished another goal that I've set fr myself in my daily routine! Go ahead...try it.....dive right in, my friends.

A Multi-tasking Of One

here is a link to the audio version, in case you would rather listen to this blog: www.youtube.com/watch?v=kRvwPiqCBXc

I.... am....amazed.... I truly am. I am now, and have always been, perpetually astounded by women. More specifically I am continually awed, and impressed by my wife's ability to multi-task. WHERE she gets it from I will never know but she can run productive circles around me. A good example of this would be the blog that I am currently writing.  It really IS all that I can handle right now, and as I write my mind is focused on this one thing, and on this one thing only. I cannot be thinking about other things right now. But if Melissa was writing this blog? She would probably, more than likely, also be paying the bills, watching a favorite TV show, and washing the dogs, all at the same time. I am lucky if I can walk and form a cohesive thought simultaneously. Most of the time my idea of multi-tasking is to put a sock on each foot. Although, technically I guess, that couldn't really be defined as multi-tasking, since I usually do this one sock at a time. Come to think about it, it would seem that I have always been doing it this way, but sometimes the pressure of trying to decide which sock to pull on first is simply too much...IT FREAKS ME OUT!

But I digress, and over the years I have heard that women are just naturally better than men at handling multiple tasks concurrently. I don't know anything about that and I really don't want to stir up another war of the sexes because of something I might say in this blog. All I can tell you is that in my life and throughout personal experiences, Melissa is way better at handling multiple situations than am I.

I would love to be able to tell you that it is because of my neurological condition. I would love to blame the disease of Ataxia. But the truth is that I can't, because I have NEVER been good at trying to do more than one thing at a time. If I do, my usual G-rated demeanor is quickly transformed into a scenario that is R-rated because of excessive violence and language. I become very frustrated and enraged at myself. Which usually only serves to make things a whole lot worse because the harder I try, and the louder I become in my own slightly-altered version of positive self-talk, the bigger the mess becomes. No, I cannot in all honesty blame Ataxia as the root of the problem. However, I CAN say that my Ataxia amplifies the problem. My inability to do more than one thing at a time has been turned up to eleven, (if you saw the movie, This Is Spinal Tap, then you will understand that reference).

And so, you may be asking yourself right about now just exactly how I was able to make it through all my past employment, say, as a chef, without this skill? Well I am happy that you have chosen to ask such an astute question, and I would be more than happy to provide you with a very sensible, and insightful answer. And here it is..... I faked it, that's how. Now I know that you could argue that faking something while at the same time engaging in another activity is, in itself, a form of multi-tasking. First of all, I would like to thank you for your unwavering support, and albeit somewhat misguided, belief in me. And second of all....uh, well....actually that's it, there really is no second of all, I just thought that it saying that there was might add more legitimacy to the first, and only point. Kind of a cheap trick, I know, but I hope you don't mind.

Since I have already broached the subject of my past history of employment, namely the years that I spent in the kitchen, allow me to tell you a little bit about this. I learned to cook at a very young age when I started helping my mom in the kitchen. I always enjoyed being there, and it began to look as if I had a instinct, and a knack for it, so it seemed like a natural conclusion to head in the direction of making food a career. In 1986 I went to a Culinary Institute and then spent the next several years working in that profession. That is, until I came to the realization that I enjoyed cooking more as a hobby, making specialty and artistic meals for family and friends. Over the past few years that I have been dealing with the presence of Ataxia in my life, the delicate and fine art of cooking has begun to take on more of the appearance of a novice attempt at abstract art. The art form where someone is praised for haphazardly flinging paint onto a large canvas in some kind of seemingly weird chaotic statement. I think that really, the best way to describe my current process in the kitchen is to simply re-post a previous blog that I wrote on this subject.... And so here it is.... 

                             Care To Super-Size That Mess?


I've always, always made a rather large mess. Even before I was diagnosed with Spinocerebellar Ataxia, especially when it came to being in the kitchen. In 1986 I attended a Culinary Institute in Portland, Oregon and could spill, slop, and/or drop any food that I was preparing with the best of them. But post-diagnosis? Well, that puts me in a whole another class my friends, (think Edward Scissorhands meets the Swedish chef from the Muppets). To me, good tasting food has become synonymous with the need to do some serious clean-up. I have just accepted that things are going to get, um....interesting. Anyway, it seems like the harder I try to keep things tidy and the counters clean the worse it gets. So why fight it? I think I'll just go with it, and so......

I am seriously thinking of opening up a restaurant that I would name Che'SpaZtic's. The theme would be, "A place where friends are always welcome, and the food is always flying". Everything would be made and cooked in a big glass-encased room that would serve as the kitchen, and be in a central location that will be surrounded by the dining room so that everyone would have, and enjoy, a view of their food being lovingly hand tossed. This would serve a dual purpose. Watching food being prepared, and thrown around, by the cook staff would be an educational experience, but would also provide the night's entertainment. So, Che'SpaZtic's would, in every way possible, be like going to a dinner theater, and there would of course be a cover charge as such. All drinks would be personally shaken simply by default, not stirred, and the water glasses would be double the size of the normal water glass that you would receive at a regular sit down restaurant. That way, by the time the waitperson arrives at your table, and half the water has sloshed out while they walked, you will still receive a nice amount of ice water. There will not be a dress code, however since I will be there, the use of rubber clothing or bibs would be strongly encouraged and available for rent from a kiosk in the front foyer. And, of course, there would be a theme night. The most popular of which I predict would be food-fight night, although I can't figure out how to make that night any more distinguishable from the other nights at Che'SpaZtics.

The only question remaining that I have, is.....now that you know the hazards and potential perils of being around me.....would you spend an evening at that restaurant? Leave me a comment, I'd like to hear your thoughts.