This is audio version:https://www.youtube.com/watch?v=wSl-HRk2jIA
My Ataxia has officially been around now for almost 14 years, and for good or bad....(I phrased it this way because it really doesn't make any sense to say for bad or bad. Of course, I could have said for bad or worse......and I actually like that, so let's begin again shall we?)
My Ataxia has officially been around now for almost 14 years, and for bad or worse, he (my SCA is masculine) is always trying to be helpful....... if your definition of "helpful" would be, "let's see how bad we can mess this up!"
Let's take a closer look at some of the ways that my SCA-man-boy would consider himself to be helpful:
- 1. He is an excellent assistant in the kitchen.
I need to back up, though, to be entirely accurate. Because working in the kitchen environment has always had its little difficulties and all that the official diagnosis of Ataxia did was to enhance those obstacles. In all actuality, I no longer was even working as a Chef when the news was delivered to me that I was now the proud owner of a Neurological Disease, in 2003. All of my cuts, abrasions, and burns had occurred a long time before then (in all of their numerous glory). There were too many to mention them all, but I will tell you about what was probably the worst one, which occurred time-wise, not very long before SCA's official arrival.
I had quit the kitchen as a profession, and instead had taken a job at a local wood shop, making cabinet doors. I had also taken a part-time job at a local bakery, and after frying a significant amount of donuts and other pastries one day, I was going to clean the deep-fat fryer before moving on to other tasks. I had just turned off the 375-degree fryer and was beginning to drain it when I saw that the drain was becoming plugged with sediment. I grabbed the long wire that was used to poke open the drain whenever this would happen and proceeded to...well, poke around. That's when I lost my grip on the wire, and the back of my hand was immersed in the hot liquid.
As quickly as I pulled my hand out of the fryer (it couldn't have been in contact with the hot oil for more than a fraction of a second) the oil had already done its damage. Water and steam are one thing, but oil keeps burning because it soaks into the skin and is not easily removed. I was lucky and got away with only 2nd-degree burns, but the healing process was quite painful.
Oh sure, there are plenty more stories, and I could share them all...but like I said, I won't. Because this is about today.....and today my SCA insists that his ways around the kitchen are vastly superior. No matter the size of the job, apparently, his impression of me, and his current assessment of my skills in the kitchen is that I sorely lack in any talent and that I desperately need his expertise.
After a prolonged food-preparation session in the kitchen, a quick visual inspection makes it unclear as to whether I had been preparing a meal, teaching a seminar on earthquake preparedness, or practicing my fingerpainting skills in anticipation for enrolling in a class at the local Community College.
.......enough said.
When I referred just now to SCA as being great at parties and crowded events, of course, you realize that I was being slightly sarcastic, right? What I meant by the phrase, "great at," is in actuality, "I wish that I could have just left him at home." But you know that I can't, for an obvious reason that I won't insult your intelligence by mentioning....but there is another reason to consider that you may, or may not of, already discovered.
It is because I could never trust my Ataxia to be alone....in my house....unsupervised.....ever.....under any circumstance. If I could, and ever did leave him home alone, I would first need to possess three separate homeowners insurance policies to cover the mess left in his wake. There would be differing dimensions of holes in the walls from where he fell, huge stains on the carpet from where he dropped stuff, blood everywhere from his various injuries, and broken windows from when he got angry and threw things. And that would be the tame stuff.... I'm not even going to mention some of the more severe things for fear of censorship.
I have now established that everywhere I go, I am considered an invited plus-one because Ataxia is always accompanying me. So, after I have happily (grudgingly) introduced him to everyone in the room, I try my best to distance myself from him, as people whisper to each other and wonder who invited that guy, and why is he even here?
If that all wasn't already bad enough, somehow, it seems that now I have even become his designated driver. No matter where I hide...be it, under a table....in a bathroom stall....in a coat closet....or anywhere else.....I am invariably always seeming to be the one stuck taking him home. Apparently, my Ataxia is a firm proponent of the saying, "goin' home with the one that brung ya." It's like I have won the worst door prize in the history of door prizes, and I am stuck taking my "prize" home. He's not even garage sale worthy.
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.
I have also been recently thinking of purchasing one of those colorful ice cream trucks. The ones that drive around the neighborhood and play upbeat children's songs in an attempt to attract kids and sell them frozen treats. I'd be like," Sorry kids; I'm out of ice cream, but I have this life-size doll that you could have for free....."
Dressing-up my Ataxia like an ice cream truck in order to give him away is probably an idea that admittedly wouldn't work...and actually, it's an entirely crazy idea. I'm just so tired of Ataxia's help. Yeah....it's an utterly ludicrous thought, and at this point....I'm 90% sure that I wouldn't try something like this.
Ataxia in this area, for me, has begun to take on the feeling of a struggling romance. I say that because often it seems like Ataxia is trying to keep the mystery alive. Every night when I go to bed is a question as to whether I will make it straight through the night, or wake sometime in the middle of the night, move to my recliner, and sit in silence wishing that I could sleep.
Oh sure, there are plenty more stories, and I could share them all...but like I said, I won't. Because this is about today.....and today my SCA insists that his ways around the kitchen are vastly superior. No matter the size of the job, apparently, his impression of me, and his current assessment of my skills in the kitchen is that I sorely lack in any talent and that I desperately need his expertise.
After a prolonged food-preparation session in the kitchen, a quick visual inspection makes it unclear as to whether I had been preparing a meal, teaching a seminar on earthquake preparedness, or practicing my fingerpainting skills in anticipation for enrolling in a class at the local Community College.
.......enough said.
- 2. He is great at parties, and/or other crowded social events.
When I referred just now to SCA as being great at parties and crowded events, of course, you realize that I was being slightly sarcastic, right? What I meant by the phrase, "great at," is in actuality, "I wish that I could have just left him at home." But you know that I can't, for an obvious reason that I won't insult your intelligence by mentioning....but there is another reason to consider that you may, or may not of, already discovered.
It is because I could never trust my Ataxia to be alone....in my house....unsupervised.....ever.....under any circumstance. If I could, and ever did leave him home alone, I would first need to possess three separate homeowners insurance policies to cover the mess left in his wake. There would be differing dimensions of holes in the walls from where he fell, huge stains on the carpet from where he dropped stuff, blood everywhere from his various injuries, and broken windows from when he got angry and threw things. And that would be the tame stuff.... I'm not even going to mention some of the more severe things for fear of censorship.
I have now established that everywhere I go, I am considered an invited plus-one because Ataxia is always accompanying me. So, after I have happily (grudgingly) introduced him to everyone in the room, I try my best to distance myself from him, as people whisper to each other and wonder who invited that guy, and why is he even here?
If that all wasn't already bad enough, somehow, it seems that now I have even become his designated driver. No matter where I hide...be it, under a table....in a bathroom stall....in a coat closet....or anywhere else.....I am invariably always seeming to be the one stuck taking him home. Apparently, my Ataxia is a firm proponent of the saying, "goin' home with the one that brung ya." It's like I have won the worst door prize in the history of door prizes, and I am stuck taking my "prize" home. He's not even garage sale worthy.
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.
I have also been recently thinking of purchasing one of those colorful ice cream trucks. The ones that drive around the neighborhood and play upbeat children's songs in an attempt to attract kids and sell them frozen treats. I'd be like," Sorry kids; I'm out of ice cream, but I have this life-size doll that you could have for free....."
Dressing-up my Ataxia like an ice cream truck in order to give him away is probably an idea that admittedly wouldn't work...and actually, it's an entirely crazy idea. I'm just so tired of Ataxia's help. Yeah....it's an utterly ludicrous thought, and at this point....I'm 90% sure that I wouldn't try something like this.
- 3. He also assists me in acquiring a good night's sleep.
To be honest, though..... I've never really had a clear understanding of what the connection is between my SCA and the ability for me to remain asleep. I have no problem going to sleep.....it's just staying there that's the difficulty. I suppose it could be that he simply gets bored waiting for me to wake up....and after a few hours, he wants to play again. Assessing the situation (as only Ataxia can do it), he arrives at the conclusion that I have now had ample time to rest (approximately 2-3 hours).
Occasionally, he will wake me up via a horrendous leg cramp, or by a pressing need to inspect the bathroom plumbing (I suspect that there has been a partnership struck with the bladder). At others times he will jolt me out of a peaceful slumber by plugging in the extension cord that runs an electrical current directly to my muscles....causing them to either tightly seize-up in a cramp, or twitch and buck violently.
In the light of these things, it makes perfect sense as to why my sleep is affected by Ataxia. However, the vast majority of the time I simply wake up, for no apparent reason, other than to journey into the bathroom just to make sure that....uh, all is as it should be. Then I spend anywhere from the next hour to 3 or 4 hours wondering where sleep went to in such a hurry, and when it might be traveling back my way.
I may not have a complete understanding as to the nature of the relationship between the random lack of sleep, and my Ataxia. But there are two reasons that lead me to believe that there might just be a connection between the two, after all. The first one is because of the testimonies of others. It appears that the state of insomnia is experienced on a large scale. If I am up in the middle of the night and decide to play one of the social word games, the friends that I play, quite often are also enduring a sleepless night..... invariably playing at the same time that I am.
The second and the most telling reason is that Ataxia never appears to be surprised when I wake up. He never seems to be groggy, or half asleep...but is always ready to assist me like he's been awake for quite some time...maybe he never even went to sleep at all. You would think that there might be a moment, like in the middle of the night or first thing in the morning, when I could catch him before he wakes up. A moment which would allow me to talk, walk, and see straight....as in, the exact opposite of how people usually act when they first get up. Stumbling around until they've had a chance to rub the sleep out of their eyes, run through their morning routine, and fully wake up.
You would think this is the way it would work....but Ataxia always comes across as being prepared beforehand, and for any occasion. He is right there....by my side whatever the hour may be. Instantly willing and able to help me make some noise as I try and make my way around the bedroom as silently as possible, trek into the restroom (again, someone needs to do nightly inspections), and then when I move to my final resting place...the easy chair.
I would love for this to be the end of the story, but there seem to be countless ways in which Ataxia is more than happy to assist me. What I would really like at this point, is if you all would leave me a comment and let me know some of the ways in which your particular handicap tries to help you!
The second and the most telling reason is that Ataxia never appears to be surprised when I wake up. He never seems to be groggy, or half asleep...but is always ready to assist me like he's been awake for quite some time...maybe he never even went to sleep at all. You would think that there might be a moment, like in the middle of the night or first thing in the morning, when I could catch him before he wakes up. A moment which would allow me to talk, walk, and see straight....as in, the exact opposite of how people usually act when they first get up. Stumbling around until they've had a chance to rub the sleep out of their eyes, run through their morning routine, and fully wake up.
You would think this is the way it would work....but Ataxia always comes across as being prepared beforehand, and for any occasion. He is right there....by my side whatever the hour may be. Instantly willing and able to help me make some noise as I try and make my way around the bedroom as silently as possible, trek into the restroom (again, someone needs to do nightly inspections), and then when I move to my final resting place...the easy chair.
I would love for this to be the end of the story, but there seem to be countless ways in which Ataxia is more than happy to assist me. What I would really like at this point, is if you all would leave me a comment and let me know some of the ways in which your particular handicap tries to help you!
