Wednesday, August 14, 2013

That's What Makes You Beautiful

So just by chance, I got to watch this video on YOU TUBE about a woman who was talking about beauty.  Ha. Beauty. Something I struggle with every single day!  What does SHE know, I thought.

But then I listened.

And Listened...

This woman who was scarred after a burn accident as a child, hit the nail on the head.

My ENTIRE life, I have been stared at, made fun of, tortured and ridiculed.  All because I didn't fit in with other peoples idea of "perfect".

I was short (still am, go figure), chubby (working on that), wore glasses, had braces....And, had a disorder that while THEN it was so mild,, that doctors didn't even pick it up....But...made me different enough, that I would never EVER be considered "normal".

Mocked. Teased. Tortured.

My prayers back then were NOT for them to accept me and be my friend....They were for ME to change and be like them.  Wait.  WHAT?  Be like them?

Ignorant - Nasty - Judgmental?  

The woman in these You Tube videos described a pivotal moment in her life, when her perspective about what people thought about her changed.  I related with her and her story in such a huge way.

No....I am not scarred (on the outside anyway)  But I AM different.  Having Neurofibromatosis comes with visual confirmations that I am different.  I get judged and have comments thrown at me all the time.  I've had Mary Kay consultants tell me that they could help "cover that up"....Others ask me why I don't get the tumors removed.  Some...Just asked questions about what the bumps are...or if I'm contagious.

Nice huh?

I've let what others think of me, affect EVERYTHING I do. I'm getting better about this....But, as those with NF know...My tumors will only get worse.  The stares, questions, "helpful advice"....Will only get worse.

Feeling beautiful, is a tough one for me.

My husband tells me I am beautiful....I usually roll my eyes and shrug it off as being something he HAS to say....Because I SEE the reality when I look in the mirror.


Here's what I am learning....(not LEARNED....LEARNING!)

The saying that TRUE BEAUTY comes from the inside.....Guess what?  It's TRUE!

I know a LOT of visually beautiful people.  Their gorgeous - flawless bodies....Who are truly shallow, ignorant and flat out MEAN.  I also know visually beautiful people who are nice, just to be fair.

But, get this....I have been given so much more positive attention, for my attitude, and inspirational stories, than I ever have for my weird bumps, or chubby body.

Those that MATTER...See the beauty that is inside me!  I AM FEELING THAT BEAUTY TOO!

Thank you Kelly Falardeau, for your spirit, your attitude and for showing what TRUE BEAUTY IS!



  1. You can't blame people for being curious about what the tumors are. NF isn't exactly a "mainstream" disease, like autism or cerebral palsy, which is on the news every other day. People sometimes don't know how to ask questions in a tactful or gentle way,that is true, but you can't crucify them for just being curious. Lots of people have tumors and skin lesions removed every day, so what is the harm of someone asking if you have any plans to have them removed? If you were truly confident in yourself, you would be able to say without hesitation that they are part of you and you have no intent to have them removed. There is a line between being positive about your own appearance and being bitter and resentful of others who are "visually beautiful". You seem bitter and angry towards all those who are visually beautiful, and then seem surprised when they are not as shallow as you expect, saying that "just to be fair" some are nice. So you're painting all visually beautiful people with the same negative, "shallow" brush? Before you expect kindness and acceptance from others, you should reduce your bitterness and anger towards them. Treat as you wish to be treated.

    1. I appreciate your point of view. I DO need to have more confidence in myself...and I am a work in progress. But you can't really assign bitterness and anger to me, based on ONE blog post. I don't claim to be perfect...or have perfect points of view....This post was written from MY own experiences with people....I DO take offense when people tell to "cover it up"...or "Remove it"....It sends a msg that I need to improve my appearance -- so that I am more acceptable to look at.

    2. That is true. My statement is just that there is a difference between people asking questions, and making snarky comments. People may be asking genuine questions, like why you choose not to have tumors removed. Asking why is very different than saying you NEED to have them removed. It just comes across that you are absolutely unwilling to hear any questions or comments from any people, out of fear of what they will say. If you appear unapproachable, people will not ask questions and become educated on NF (Ex. it is not contagious, etc) and will instead become ignorant and, in turn, judgmental. It just appears to me that you are so fearful of people's questions and what they may be, that you seem angry that anyone would dare ask or make a statement, even though you say you want people to ask questions and become educated; or bitter that people have said things in the past. Just my two cents.

    3. Thank You....I drive a big van, with the word NEUROFIBROMATOSIS written in big bold letters on the back. I LOVE to help people learn about NF and do public speaking about this, whenever I get the chance...
      Am I bitter when people try to use THEIR magic wand to try to "fix me"...Sure I am.
      But , I am far from "unapproachable"....
      I can express frustration with ignorance...and its even okay for me to be angry....But my message in this blog post was just to express that I AM TRYING...Thanks for commenting.

  2. Ever notice how people who like to be accusatory and stir up trouble are always 'anonymous'?

  3. Kristi is ANYTHING but bitter or angry. She sets an example of positivity and strength. Maybe IT'S YOU with the bitterness and hostility? Maybe YOU should check yourself, before labeling a person you have no right labeling.