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Karen Lynn Vidra, The Texas Tornado

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Not All Prisons Have Bars. ...: Living With MD (My Story) (Part One)
By Karen Lynn Vidra, The Texas Tornado
Sunday, May 08, 2011

Rated "PG" by the Author.

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A man living with a form of muscular dystrophy shares his story.

Image of agitated storm clouds (c) 2011, by Karla Dorman.

You know you've gotten a raw deal outta life when you can no longer hug your family or have to depend on them for just about every little thing because you no longer can do for yourself.

You know you've gotten a raw deal outta life when your family has to have the emergency contact numbers with them at all times while they step out just in case "something should happen".

You know you've gotten a raw deal when your wheelchair (electric, by the way) conks out right in the middle of a busy street while attempting to cross (okay, roll across) it, and horns are blaring and people are shouting angrily.

Welcome to my world.  A world of wheelchairs, indwelling catheters (since I can no longer get up to pee on my own), having to be spoonfed, or bathed/dressed/undressed ike I was an infant instead of a man in his early twenties.  This has been my fate for the past ten years, and at times it can get very embarrassing!

I have Duchenne's muscular dystrophy.  I was officially diagnosed with it when I was ten; before then, I started losing one skill after another until I became totally dpendent on a wheelchair and until my muscles got weaker and weaker.  I can't even raise a hand to wipe my nose when it runs or brush my hair out of my eyes.  Someone's gotta do that for me.  I am totally dpendent on other people for just about anything.

 I guess that is why I have developed such a big mouth because it's about the only thing I have left going for me.

While the MDA has done strides in helping people like "us" (people with neuromuscular diseases; there are now forty two or forty three of those bad boys, and people out there are suffering needlessly as a result), I get frustrated with them 'cause a true cure hasn't really been found as of yet, and they've been at it before I was even born.  I highly doubt I will see a cure in my lifetime.

My biggest dream right now is to get out of my wheelchair and walk.  That has been my wish ever since I got bad enough to depend on crutches (and then, ultimately, a wheelchair).

I hate the way people give me pitying looks whenever they see me or stand in my way when I am trying to go somewhere.  It's like they are purposely trying to impede my progress, and it really annoys the fuck out of me!

You want pity?  I'll show you pity when I buzz over your toes with my goddamn wheelchair!  I'll gladly put you in my shoes, even if for one hour or a DAY, even!  Then you will see what I have to endure, day in and day out!

Well, today's the day we honor our mothhers, so papi and me (and my sisters) are gonna take mami out for lunch and then go to the park, where I can sit and think.  That's part of my problem: sometimes I think too much; no wonder I'm so pissed off a lot of the time, especially when people treat me like I don't have a brain in my head!!   

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Reviewed by Mark Lichterman 5/10/2011
Very sad story but I certainly can understand this poor man's anger and frustration. As always, Karen, a great human interest story.
Your friend in Southern California; Mark
Reviewed by Michelle Kidwell Power In The Pen 5/8/2011
Karen the frustration is understandable and all to real, no matter what form of Muscular Dystrophy you have
In Christs Love
Reviewed by Karla Dorman, The StormSpinner 5/8/2011
I can feel this man's frustration ... well done, Karen.

(((HUGS))) and love, Karla.
Reviewed by Paul Berube 5/8/2011
Well written story, Karen.
Reviewed by J Howard 5/8/2011
you have seem to have your sense of humor still...your knowledge, wisdom and wit...can not be stolen away...good for you. thanks for sharing-

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