It seems to me that one of the first thoughts to enter my mind upon receiving the diagnosis of Spinocerebellar Ataxia was that I was all alone. The Doctor told me that SCA was a rare Neurological disease, and his words left me feeling much like a man on a long-forgotten desert island.
But, on the contrary, what I have actually discovered, since that first day is that, "Hey! There are other people here on this island that are just like me". That, although it is true that SCA is a rare disease, there ARE other people who have been, and are currently walking in the direction that I was headed, and who knew first-hand and truly understood what I was feeling right at the current moment. Even if some of the physical manifestations are not exactly the same, they could still relate to me.
This led me to a place of reassurance, and helped me to openly share my life, and my struggles, the frustrations, victories, and yes, even the humor that weaves through it all and binds it all together. It has been thirteen years since my diagnosis and I am still, at this moment, standing within this knowledge.
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| It may not appear this way, but I am standing in knowledge...... |
My reactions could, by any definition, be classified as extreme. Even when I am given ample warning that an event is coming, when that event DOES actually happen, I find that I still jump and/or flinch like I have just been probed by a one thousand volt cattle-prod.
Sometimes I will be sitting in the passenger seat of our car with the window down, and will have my arm propped up and resting on the window sill. I will be told that the window is going to be rolled up, at which moment I have a world of time, (or at least several minutes) , to remove my arm in a normal, organized, and safe manner. But I jerk violently almost every time. I pretty much have the same kind of reaction whenever I have my arm resting on the console between the two front car seats, and Melissa will need me to remove it so that she can access one of the items that lies inside this compartment. She usually introduces the topic, of me needing to move my arm, in a very calm, and soothing way by saying something like, "now, you don't need to get excited, but....". My usual response to this zero-pressure, non-time limit request is to jerk my arm away, as if it were being poked and prodded with a meat fork.
The bathroom is another area in which I find that my life has become one that is, more often than not, explained with the liberal usage of several large exclamation marks. I really don't mean to slam the toilet seat open, or drop the lid in a violent flurry, but it always seems to happen this way. I find that, through the combined efforts of losing my grip, and not being able to correctly establish distances, that I am in a constant state of either dropping something, or slamming closed cupboards, drawers, and the toilet lid.
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 shower curtain was being closed, then I would most definitely be the one to make it happen! Luckily for me a plastic 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.
Then, there is always the dreaded waste can in the kitchen, with the lid on top that is pedal activated. I mean it's a very nice feature, and also quite sanitary to have the garbage constantly covered, but the foot lever that springs the lid into action is a whole inch off the ground. This fractional distance may sound like an insignificant distance, and a floor-to-pedal ratio to be one of somewhat little consequence, but for me the foot pedal may just as well go ahead and live up to it's name, and be a foot off the ground, instead of just an inch..... because when it comes to lifting my feet up and on to the pedal? Well....at this point, trial-and-error has shown me that there really isn't a whole lot of difference between the measurement of a foot and an inch.
I also often find that as part of trying to engage the foot lever, I will first have to brace myself by holding onto the counter, and then back the can up against the wall of the kitchen island so that it won't slide around when I step on it. This maneuver is done much in the same way as any respectable loan shark would do it, as he shoves you up against a wall to get your attention.
Sometimes he will even bunch the front of your shirt up into his fists as he pushes you backwards, and I would also use this additional tactic if the trash can was wearing an overcoat and had lapels.
Sometimes, when I have failed to properly secure the garbage can and it tries to escape, by shooting out from under my first several attempts to depress the pedal, I chase it around the kitchen and end up feeling like there is now no need for any further exercise that day. I feel as if I need to get into a rigorous training program just to prepare myself mentally, and physically, to use the trash can.
I am currently fifty-one, and I have had a sweet tooth, and a " my-eyes-are-bigger-than-my-stomach" problem, for oh.....I'd say, approximately fifty-one years, give or take a day or two. The problem right now, as I see it, is that there is a limit to how big my eyes can grow, but currently, my stomach is undergoing a phenomenon that resembles urban-expansion.
I guess that I can always buy larger sizes of clothing but, really, there is a limitation as to how big I can have glasses become before they cross-over into the realm of being referred to as a face-mask. Anyway, that's the problem before me. What I think the cause to be of this current....uhmmm.....overload is a different story, because I blame it squarely on my Ataxia! No, really.....please stop your snickering, and just hear me out. Because of the Ataxia, I no longer work full-time, nor am I as active as I once was, and the same amount of food-intake is not necessary.
My life has begun to take on the appearance of an old gas carburetor engine. Do you remember what would happen if you fed them to much gas when attempting to start the car? You would just keep pumping on that gas pedal, until the car would finally sputter, stutter, flood, and die. The car would then need to rest for a few minutes, regain it's composer, and the attempt could then once again be renewed. That's me...I just keep pumping the food in, until I sputter, stutter, and flood. I rest a few minutes between meals, and then try it all over again!
Like most people though, that face limited activity and function, my body requires less fuel, and so I need to respond and train myself to eat less. Although, I have to say, this would be a lot easier if my SCA would do something positive for once, by helping me to contract some kind of eye-food related obstruction, maybe some form of ma-cuisine-cular degeneration.
These days, I have a very serious love/hate relationship with shoes. For example, I love my walking shoes because they are light, sturdy, and they have the added benefit of staying on my feet. This is a huge benefit that I will get back to in a minute. What do I hate about my walking shoes? The fact that I have to tie them.
Tying my shoes is truly a paradox, because on one hand I can make the fit very snug so that they won't come off, but on the other hand tying my shoes is timely and cumbersome. I like the quick convenience of slipping into some of the other styles of shoes that I own, and being able to move on to my next agenda item without hunkering in for a long string-tying process. But tying my shoes is good therapy for me, so you see why it's a mix of emotions to choose between the two shoe styles.
The slip-ons, though convenient, present a whole different problem all their own. Because they are not as tight on my feet, and have a tendency to come off at the worst times, (which really, could literally be ANYTIME), and will cause me to stumble and lose my balance. This has happened to me numerous times, and now you see my dilemma, and why I have a love/hate relationship with my shoes.
I am currently thinking that the best solution for this is to have a complete shoe tattooed onto each foot. I have very sensitive feet, though, so I would have to come up with a way to add some kind of barrier to the bottoms of my feet so that the whole walking thing would work. I wonder if tattooing a shoe sole with the rest of the foot/shoe tattoo would work........?
These examples are just a few more of the everyday systematic affects of my Spinocerebellar Ataxia. I would love to hear from you, my friends, if you find that you can relate to any of them. Please leave me a comment.
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 shower curtain was being closed, then I would most definitely be the one to make it happen! Luckily for me a plastic 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.
Then, there is always the dreaded waste can in the kitchen, with the lid on top that is pedal activated. I mean it's a very nice feature, and also quite sanitary to have the garbage constantly covered, but the foot lever that springs the lid into action is a whole inch off the ground. This fractional distance may sound like an insignificant distance, and a floor-to-pedal ratio to be one of somewhat little consequence, but for me the foot pedal may just as well go ahead and live up to it's name, and be a foot off the ground, instead of just an inch..... because when it comes to lifting my feet up and on to the pedal? Well....at this point, trial-and-error has shown me that there really isn't a whole lot of difference between the measurement of a foot and an inch.
I also often find that as part of trying to engage the foot lever, I will first have to brace myself by holding onto the counter, and then back the can up against the wall of the kitchen island so that it won't slide around when I step on it. This maneuver is done much in the same way as any respectable loan shark would do it, as he shoves you up against a wall to get your attention.
Sometimes he will even bunch the front of your shirt up into his fists as he pushes you backwards, and I would also use this additional tactic if the trash can was wearing an overcoat and had lapels.
Sometimes, when I have failed to properly secure the garbage can and it tries to escape, by shooting out from under my first several attempts to depress the pedal, I chase it around the kitchen and end up feeling like there is now no need for any further exercise that day. I feel as if I need to get into a rigorous training program just to prepare myself mentally, and physically, to use the trash can.
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| Employing the "loan-shark" technique |
I am currently fifty-one, and I have had a sweet tooth, and a " my-eyes-are-bigger-than-my-stomach" problem, for oh.....I'd say, approximately fifty-one years, give or take a day or two. The problem right now, as I see it, is that there is a limit to how big my eyes can grow, but currently, my stomach is undergoing a phenomenon that resembles urban-expansion.
I guess that I can always buy larger sizes of clothing but, really, there is a limitation as to how big I can have glasses become before they cross-over into the realm of being referred to as a face-mask. Anyway, that's the problem before me. What I think the cause to be of this current....uhmmm.....overload is a different story, because I blame it squarely on my Ataxia! No, really.....please stop your snickering, and just hear me out. Because of the Ataxia, I no longer work full-time, nor am I as active as I once was, and the same amount of food-intake is not necessary.
My life has begun to take on the appearance of an old gas carburetor engine. Do you remember what would happen if you fed them to much gas when attempting to start the car? You would just keep pumping on that gas pedal, until the car would finally sputter, stutter, flood, and die. The car would then need to rest for a few minutes, regain it's composer, and the attempt could then once again be renewed. That's me...I just keep pumping the food in, until I sputter, stutter, and flood. I rest a few minutes between meals, and then try it all over again!
Like most people though, that face limited activity and function, my body requires less fuel, and so I need to respond and train myself to eat less. Although, I have to say, this would be a lot easier if my SCA would do something positive for once, by helping me to contract some kind of eye-food related obstruction, maybe some form of ma-cuisine-cular degeneration.
These days, I have a very serious love/hate relationship with shoes. For example, I love my walking shoes because they are light, sturdy, and they have the added benefit of staying on my feet. This is a huge benefit that I will get back to in a minute. What do I hate about my walking shoes? The fact that I have to tie them.
Tying my shoes is truly a paradox, because on one hand I can make the fit very snug so that they won't come off, but on the other hand tying my shoes is timely and cumbersome. I like the quick convenience of slipping into some of the other styles of shoes that I own, and being able to move on to my next agenda item without hunkering in for a long string-tying process. But tying my shoes is good therapy for me, so you see why it's a mix of emotions to choose between the two shoe styles.
The slip-ons, though convenient, present a whole different problem all their own. Because they are not as tight on my feet, and have a tendency to come off at the worst times, (which really, could literally be ANYTIME), and will cause me to stumble and lose my balance. This has happened to me numerous times, and now you see my dilemma, and why I have a love/hate relationship with my shoes.
I am currently thinking that the best solution for this is to have a complete shoe tattooed onto each foot. I have very sensitive feet, though, so I would have to come up with a way to add some kind of barrier to the bottoms of my feet so that the whole walking thing would work. I wonder if tattooing a shoe sole with the rest of the foot/shoe tattoo would work........?
These examples are just a few more of the everyday systematic affects of my Spinocerebellar Ataxia. I would love to hear from you, my friends, if you find that you can relate to any of them. Please leave me a comment.
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| I am literally just going to sit right here, as I await your comments...... |
