Wednesday, December 2, 2009

Thriving Thursday

Defective: Adj; Meaning: Imperfect form

"In Neurofibromatosis, a genetic defect causes these neural crest cells to develop abnormally. This results in numerous tumors and malformations of the nerves, bones, and skin." The Medical Dictionary

I know about Neurofibromatosis. I know how the Medical books define it. But when I hear the word "defective" or "disease", I cringe. I don't label myself as defective! "Defective" is something you take back to the store for a refund!
I refuse to wear that title over my head!
Having Neurofibromatosis is challenging enough, wearing a defective sign around our neck is not something most of us should have to do...certainly not me. Next thing you know, you'll be walking down the street, and some Southern guy with a flannel shirt will come up to you and say "You're defective - Here's Your Sign!"
I for one, have no intention being talked down to, felt sorry for, or defined by a 'Defect'. Call it a mutation (after all, my kids think I'm a super-hero). An alternative genetic alignment. But not a defect.

1 comment:

  1. marlsunshine@twitter.comDecember 5, 2009 at 1:20 PM

    wow,kristi I feel the same way. I just went for pre-op for a spinal cord stimulator. I loved the trial. no meds needed! anyway girl, I was asked if I got hit by a car, truck, what happened to my back,and the oh my god u poor thing. I hate it all and I am a survivor,hero,and not defective. but when you go to pre-op testing you'd think when people see someone like us they'd know,but they always do the same stuff.pretty bad when the community you think has your back kicks you in it. my poor boyfriend who has been amazing to me,got to see a side of me I rarely show.not being in control is hard for me. especially when you get a bunch of people you think will at least have been taught the skill of if you don't know don't assume.NOT ! anyway didn't know about your husband and his champions of choice. I'm right ? hope so.I wish you and your family a very happy holiday.especially your amazing kids.by the way hope you don't mind my saying you have a wonderful husband.

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