Whodunit: The Misadventures Of My Mutant Ninja Protein

Too often, I find myself apologetic over hurdles that come with Dystonia: I’m sorry it’s difficult to understand me…I can’t walk across the park…I need more time to finish this form. Worse are the silent apologies I make to myself. Why do I perpetually raise excuses for my condition as if responsibility for this annoying hoopla falls squarely on my shoulders? I possess greater control over my runaway temper than my speech or my stride. Dystonia arrived as an intruder on my doorstep, robbing me of some of my dearest possessions: clear speech, even gait, smooth handwriting, contraction-free enjoyment of life.

16542915_sThe perpetrators of this medical crime lurk deep inside my brain committing all kinds of chemical mischief. I’ve participated in a bunch of “line-ups” – ironically, I’m the one who’s scrutinized – but while a culprit surfaces in a blood test, the actus reus can’t be captured in a pretty picture and my “head shots” are dead-end streets. We know Mr. DYT1, my uninvited houseguest, orchestrates a mutant ninja protein – Torsin A – who’s ostensibly a key player in a conspiracy of neurological proportion involving a perplexing hoist of my brain with a modus operandi stumping even the most seasoned investigators. To complicate matters, a host of suspect genes orchestrating their own villainous behaviors are implicated in different forms of Dystonia.

On the bright side, I function as my own “neighborhood patrol,” doing my best to combat an ongoing bodily offense. I undertake every effort to keep the crime labs busy, proffering skin and blood samples, funky PET scans, functional MRIs…accompanied by eyewitness accounts of the damage inflicted on my landscape. Meanwhile, I remain a walking crime scene apologizing for acts I can’t explain. Perhaps my amends are best bestowed on the objects of my temper…

18 responses to “Whodunit: The Misadventures Of My Mutant Ninja Protein

  1. Pamela, your report reads like a criminal novel. One has started to read. Then one gets away no more from the report. One must simply read on.
    I believe, I have found the murderer: DYT1

    Pam, I am glad over and over again to read your refreshing reports on your life with dystonia.
    If it was not so sad, one could mean, you write a science fiction novel.

  2. I can see that. “He’s got some strange head positions, walks a little weird , isn’t working , or driving”
    But!! pretend you don’t notice. Or he will take your head off”
    Pam, What do you think ?

  3. Fantastic Article Pamela, love your writing style.

  4. Never apologize for what is beyond your control. That makes absolutely no sense. Having dystonia does not nor should it ever define a person’s character. You are special in more ways than one and for those reasons alone you have nothing to be sorry for.

    • Ed, What a wonderful friend I’ve found in you. I can’t even find the words to tell me how much your support and concern means to me and the innumerable ways you’ve enriched my life. I take heart in every. Ounce of good sense you I still in me. You are truly the best. -Pam-

  5. Very good description of the obstacles created by unexplainable disease.

    • Hey Angela, Always so nice to hear from you. I think everyone would agree Dystonia is one big medical mystery but hopefully research will lead to continued promising discoveries. Meanwhile, we live with the beast! -Pamela-

  6. Reblogged this on redzhis and commented:
    This is the inexplicable scenario that some of us are privileged to face, guess what – being different is the most difficult thing to be.

  7. Pam, you’re truly exceptional. We are victors not victims, regardless of how stumped the experts clearly are.

  8. I agree with Ed 100 percent. There would never be a reason to apologize. We have never meet but I think your a wonder person with great ideas. Your true friends will always understand.

  9. Pam you like me have been waiting for a cure most of our lives. Mines now halfway over. I think in my earlier days with dystonia I apologized, but not anymore. If I’m carrying something hot I just warn others out of my way. Me and my body are what we are. When I speak please listen carefully because normally as a rule I will not repeat myself. If you didn’t understand me the first time chances are you damn sure won’t understand me the second time either.

    • Donna, How I love your no-nonsense attitude about Dystonia. I’ll take a page from your book! Who knows, maybe we will receive a cure in our lifetime – we can always dream. As for our lives being halfway over, doesn’t that also mean they’ve only halfway begun? Have a great week. -Pam-

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