Thanks, But I’ll Take the Sticks and Stones

This is my first post in a series inspired by Craniofacial Awareness Month.  We’ll see how long it lasts... 

Remember that old nursery rhyme chanty thing when we were little?  Sticks and stones may break my bones but words will never hurt me.  I always thought the guy who came up with that little ditty must’ve had a heck of a lotta self-esteem.  That; or he lived in a bubble.  But unless we’re channeling John Travolta circa 1976, nobody’s living inside a protective bubble.  The world’s out there and we’ve gotta take it on – even the sticks, the stones, and the words that are hurled our way.

Last week was an auspicious week for a couple of friends and colleagues.  They were sending their daughters off to kindergarten!  Starting school is such a huge step and as I listened to and read their stories, I couldn’t help but think back to when I started elementary school.  I think that was when I first realized that other people – people totally outside of my safe family bubble – saw me as being different from all the rest of the kids on the playground.   

It wasn’t like I was completely unaware that I looked a little different.  My mom has told me that when I was four years old, I looked in the mirror, and asked her why I had a boo-boo on my eye.  So, obviously I was aware of appearances – mine and everyone else’s.  Starting school made me acutely aware of something else – looking different wasn’t exactly good and unless you were Punky Brewster, looking different wasn’t something to be celebrated.  Nope, in the mid-1980s in the hallways of a suburban elementary school, looking different made me an easy target. 

And nobody’s an easier target than the girl at the water fountain.

Now, don’t get all scared.  This isn’t a sticks and stones story.

I wasn’t any old girl at the water fountain.  I was a Fourth Grade Safety, complete with an orange belt, authorized by Glenside Elementary to protect the water fountain in the main hallway during school dismissal.  It was definitely the cushy spot in the rotation; a spot that I had lusted after ever since I saw my big brother standing guard when he was a Fourth Grade Safety.  I loved it.  Except every day that I was on duty in front of that water fountain, a second grader would come by and call me Monster Face.  Sticks and stones?  I would’ve preferred them. 

Something that I loved, something that I had wanted to do ever since I was in the first grade became the thing that I dreaded most in the world.  When I saw his class coming down the hallway, the knot in my stomach would grow bigger and bigger, as he got closer, I would duck my head, and silently pray that he didn’t say it, not that day.  Usually, my prayers went unanswered. 

Words will never hurt me.  Words hurt me most of all.

I wish I could say I stood up for myself.  I wish I could say I held my head up high and soldiered on.  I wish I could say that…but I can’t.  Ducking my head – hiding – became the norm.  In fourth grade, sixth grade, high school…all the way up to college.  I worked very hard to create my own little bubble where I was safe and nobody could hurt me.  I did a pretty good job for a while.

But bubbles burst.  And I’m not in fourth grade anymore.  I’m taking on the world.  Even second graders.  Especially second graders.

Seriously, We Have Our Own Month?

The other night my Facebook real-life friend Tom posted the following status update:

September is Craniofacial Awareness Month…those with differences come in many packages but the one thing all have in common is that there is a living, breathing, feeling person behind those big named syndromes and disorders.  Each should be acknowledged for their own individual talents, as well as their challenges.  Keep in mind beyond the face is a heart; the person you are ignoring, staring, gawking or pointing at is someone’s much loved child…Consider instead, a smile and a wave. 

Tom has Treacher Collins Syndrome (TCS) like me but like me his awesomeness extends beyond that.  I left a smart-ass comment for him wondering where our presents were.  I had no idea there was a whole month dedicated to people with craniofacial differences.  What’s next?  A commemorative stamp?  Probably not – did anyone see the New York Times article about the Post Office?  Am I timely or what?  Or maybe just psychic? 

I’m getting off topic.  Which is so typical of me.  And so typical of this blog.  Guess what?  My original intent when I started blogging was to write about living with a craniofacial difference.  This blog’s original name was “Forward Facing” and boy, was I going to be the voice for all disenfranchised people who had a craniofacial syndrome!  I was going to start a revolution!  (I’m big into starting revolutions)  Having TCS was the central, most important thing in my life; it defined me; it was who I was; it was my story. 

Guess what?  Nobody’s disenfranchised!  And revolutions are hard to get off the ground.  And, oh yeah, it’s not my story.  As I’ve written here over the past nine months, I realized that I’m not the person who I always thought I was – Denise with Treacher Collins Syndrome.  Nope, I’m just crazy Denise who isn’t as afraid of change as I once was, who is a winning Toastmaster, who loves chocolate milkshakes but stands firm in my dislike of tacos, and who keeps getting speeding tickets because speed cameras are the tools of the Devil.

But in honor of Craniofacial Awareness Month – and because this blog is the best therapy there is – I’ve decided that I’m going to write a few specific posts about living with TCS.  Then again, I’ll probably go off topic this month because, well, that’s just who I am.    

But promise me one thing.  If ever we run into each other, I hope you’ll smile and wave.