creative center.

Mechanical Me

Sandy Boyle 06/18/2018

All I want is one friggin Puffs tissue! I gently reach for one, you know because they’re so delicate…I’m DENIED!  I gently try again…no go.  Third strike you’re out?  I don’t think so.  Forget you MS!  I grab a handful and WILL retrieve the one I want from the bundle- I WIN!  When I have a bad day due to stress, lack of sleep, or being overheated, it seems the more gentle I am in functioning throughout the house, the more apt I am to be hurt or fail in the attempted  process.

In my attempts to do the minutia of the day, like gently picking this up or gently opening up that UPS nuclear wrapped package with my medicine in it- it fails and denies me.  When I have days like that, I benefit from “man handling” everything.  As a result, I am rewarded with that which I seek.

Similarly, there are days where my walking is way off balance but I have things I need to do around the house.  One of the ways I counter my MS imperfections is by concentrating on only the thing I need to function.  If I know I’m having a bad day and I have to Do this or do that such as, simply walk efficiently, I can’t have a lackadaisical mentality about it.  I think of myself as machinery, like a drill that needs to punch that hole.  Pretty sure the drill is not thinking about oh it’s hot in here I need to turn the AC up before I mechanically twist my drill bit and cut into this metal.  No no, it’s functioning deliberately and mechanically.

I have to mechanically visualize the legs and their movement, the feet and their placement, the forward trajectory and it’s intended destination and by golly, it works.  I’ll warn you – it does tire you out when you concentrate so specifically about a simple function, but sometimes you have to do what you have to do to get-er-done.  At those times, I am only thinking about the nerve endings dealing with the tasks.   All my concentration goes to that one function, that one muscle group, and I treat it very mechanically both in visualizing the action and executing the task.  I’ve become an extremely capable robot executing the task of walking.

I tire easily but the machine doesn’t in the task at hand until it’s completion. Somebody sent me a video once on YouTube that showed this young girl running a race around the track with other girls. She was in her 20s I think and she was winning. Towards the end of the race her coach stood at the finish line and she collapsed in his arms.  She starts screaming, “please help me, I’m hot…My Legs, My Legs…Where’d they go?”.  The video was called “Catching Kayla” and shockingly, she has MS!

I did not understand what I was looking at? It really took me a while to understand that she was not able to walk most times, that she did something to get her body to execute the task of running.  What a remarkable video that began an internal look at everything I had succumbed to, everything I said I can’t do this and I can’t do that.  It was the seed to this growing plant that is teaching me that I CAN. For me, being mechanically minded, I started turning the “I can’ts” into commands to my body of “You Will”… like Kayla did on that track.  This is the part I confessed that when I compartmentalize each task into it’s mechanical function, it can be tiring, much like Kayla collapsing at the finish line.

So you have to make a choice, if you are more comfortable allowing each demise with MS, or if you’re Stubborn like I am and refuse to bow-out of the fight.  It’s a personal decision. I was deeply moved and intrigued by what Kayla did on that track but denied her many many times in her life.  Figuring that out became the legend to my map. They’ll be times I’m too tired to figure this out, but it’s on my to-do list if I’m denied a function.

For me, compartmentalizing each function and concentrating on the muscles, the intended movement, the brain’s nerve schematic, and the task at hand works. I keep reading about advancement after advancement in the understanding of MS.  Just yesterday,  I learned through the NMSS about how we’re all in this together.  The email connected to a video by a woman who has an extremely similar MS path to mine-Palmer Kippola.  Like watching catching Kayla and how it became a legend to my Can-Do map, so to has this video impacted me, especially the bit about the gut. I always feel swollen in my gut.  Ms. Kippola has seven steps in this video and there was something like the 5R Gut something or other that I intend to attempt… Challenge accepted!  The alternative is, that I just always have a swollen gut and live with it.  But that’s not me. I have my fingers crossed, if it doesn’t work, I’m sure I won’t implode. Perhaps more sit-ups are in order and/or less chocolate?



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