Wake Up Call

29 mornings ago, I woke up a new woman.  Refreshed.  Energetic.  Clear-headed.  Awake.  

And I made it past 10 AM without needing a nap. 

Me and naps.  We go together like peanut butter and jelly.  Napping was just something I always did – as soon as I was done classes or work, I’d go home and fall asleep in a bean bag chair, a recliner, a couch, a futon, a bed, or a papasan that was probably a stupid purchase but that I had to have.  It kinda became a joke actually, how much I napped, especially on the weekends when I would nap at mid-morning, mid-afternoon, and early evening.    

I thought I was just lazy.  Which was weird because I didn’t feel like I was lazy.

At least I could function.

I never seemed to have much get up and go.  And when I got up and went, it wasn’t for long and it usually ended up with me napping on the couch.

At every doctor’s appointment that I’ve had since college, they would ask how I was feeling.  And I would say – great, except that I always feel tired.  Blood tests indicated that I was perfectly healthy. In college, my doctor told me that it was normal to be tired – I was carrying a full course load and working almost full-time.  After college, it was because I worked third shift.  When I started back to grad school it was because once again I was working and going to school.  When grad school was over, it was because I worked a lot.  Then it was because I got a new job and I was learning the ropes. 

It just seemed like it was just supposed to be this way.  This was just who I was.  But I watched friends and colleagues who worked the same amount I did, some who were juggling kids and jobs and 102 other obligations and who didn’t seem to need a nap when they got home from grocery shopping.

Bt at least I could function. 

Last summer, at my mom's urging, I went for a sleep study to find out if I had sleep apnea.  Sleep apnea is apparently a common problem for people with my syndrome on account of our small airways but I don’t follow the message boards like my mom does so what did I know?  So, I went on two nights and had my sleep observed which was all sorts of fun, I can assure you.  Afterwards, I was diagnosed with a mild case of sleep apnea – 7 apnea episodes or something. 

That’s so mild, I scoffed; seriously, why bother?  Then a lady at work told me that they were diagnosing everyone with sleep apnea these days.  And that’s all I needed to hear because I like my medical conditions to be unique.  1 in 50,000 unique, you know. 

Besides, I was functioning. 

Things started to change a few months ago.  It was harder to get out of bed.  It was harder to make it through the day.  It was harder to do much of anything.  Weekends turned into more naps than being awake.  I couldn’t even stay away to watch 48 Hours Mystery on Saturday nights.  I started to have headaches a lot.   I felt like I was walking around in a fog most of the time.

Quite frankly, I felt like I couldn’t get my shit together. 

I started to try to eat better.  Take walks at lunch time.  Try vitamins (again).  Go to sleep at the same time every night.  But nothing seemed to be working.  If anything, my need to nap seemed to be increasing.   

Then one Sunday, I woke up and didn’t want to get out of bed at all.  What was the point?  I’d just be napping in an hour anyway. 

I have a friend who has said about me that I don’t do anything until I’m ready.  And when I’m ready, I’m ready.  After that Sunday, I knew I was ready to make a change. 

I called the sleep doctor who renewed my never-filled prescription and 30 days ago, I brought home a CPAP machine to use when I sleep.  I asked the technician if I should use the CPAP when I nap – not just at night.  He told me that I wouldn’t be napping once I started CPAP therapy.  I rolled my eyes skeptically and then yawned.   

The first night, I only used the machine for three hours - not much but the results were astounding.  When I woke up, it was like I had slept for days.  My head was clear and I had energy to spare.  The spring that had been missing from my step was back and more springier than ever.  Everything seemed brighter, crisper in a way.  And I was famished.  I ate so much those first two days! 

It's been 29 nights and I've been feeling better every day. 

Those naps?  They are few and far between. 

Now, I’m not only functioning - I’m wide awake. 

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.

Night

I ate Oreos at 10:45, a late bedtime snack.  Now, it’s a little after midnight and I can’t fall asleep. 

I tossed and I turned and I kicked off my comforter and I flopped from my side to my stomach and back again and all the while I was thinking.  Thinking about all the things that I’m able to push away during the day.  Because when it’s light out, things don’t seem so….dark.   

My thoughts are always darkest at night…well, if I’m awake late enough. 

I thought I was doing so well – I was making peace with the way I "look".  Yes, I look different but everyone’s different and that’s okay.  But I told you once that I still thought about it every once in a while.  More surgery.  A cheekbone here, a cheekbone there.  (Well, not just anywhere, of course; they should go where cheekbones generally go.)      

There was a trigger, naturally.  Because there always is when I start thinking like this.  What was it?  Okay, don’t laugh…but it was my race photograph (the official one they posted on the website for everyone to see, if you think I'm going to link to it, you're crazy!)  I look quite horrible…as I’m sure the other 396 runners do.  In addition to my dreadful running sprinting form, my face is all weirdly distorted – maybe it was from the sprinting, maybe it wasn’t.        

So, there I was a lot after midnight, sitting in front of my mirror dissecting my face.  Okay, really, my profile which I hate.  And to the person whom I just told that I was fine with it…well, I guess I’m not as well-adjusted as I thought I was.  I can wear a dress to work but putting my hair up in a clip is still a little too daring scary for me. 

All these thoughts are racing through my head keeping me awake when I should really be asleep because I have to get up in a few hours.

Clearly, I still have a few issues to work through.

And clearly, I need to stop eating Oreos at 10:45 at night. 

O, Say it Ain’t So!

Yesterday marked the end of The Oprah Winfrey Show after 25 years.  Turns out, I ended up missing it which was kind of a bummer.  I know, I know, I should have a DVR.  It’s okay because I saw that the final episode is going to be replayed, I’ve seen a bunch of clips, and I just watched a Farewell to Oprah tribute on my local news so I’m good.  But, wow, it’s over. 

Was there life before Oprah?  Yeah, yeah, Phil Donahue.  I seem to remember Merv Griffin and afternoon Wheel of Fortune too.  And after school specials.  Whatever happened to after school specials?  But it was so long ago…I mean, Oprah occupied the four o’clock slot on Channel 6 (the home of the very best news station in the world, Action News!) since I was seven years old! 

I was a latch-key kid so my afternoon routine went a little something like this – got home from school, called my mom at work, watched the last half-hour of General Hospital, and then watched The Oprah Winfrey Show.  I’ve always been a fan of Oprah but sometimes I found her a little annoying.  Actually, I didn’t watch the show too much from the late 90s to the mid 2000s.  So, I missed the Book Club and the Angel Network and the Car Give Away.  I started watching again a few years ago, mainly because I have a crush on Dr. Oz.

I had a secret dream to be on Oprah.  When you’ve got a facial abnormality and feel like a misfit, where do you want to go to share your story?  Oprah, of course!  You’d share your story and everyone would see it and hear it and then they would stop staring or teasing because it was on Oprah and if it was on Oprah, people just seemed to understand and accept.  And yeah, maybe I hoped I’d get a book deal out of it.  Then I grew up. 

I never got to be on Oprah and I never got to be in her studio audience.  But a few years ago, my friend Lidia and I went on a trip to visit friends in Chicago.  Lidia, like me, has TCS.  She was the first person I ever met who looked just like me.  For many years, she was the only person I knew of who looked like me.  When you know there’s one other person out in the world who’s like you, who understands, it feels a little less lonely some days.  I’m pretty sure she had Oprah dreams too (well, actually she got to be on The Tyra Banks Show and Tyra was going to be the next Oprah!)

There were two things I wanted to see when I was in Chicago – Oprah’s studio and the American Girl store.  Look, I’ve had an American Girl doll since I was nine years old – I was hitting up that place.  I don’t care that I was approaching 30.  After perusing that Mecca of Girlness and buying Samantha some new dresses - she’s worn the same dress since I was nine, it was time for a change of clothes; our hosts drove us to the other side of the city and we got to see Oprah’s studio!!

Lidia and I jumped out of the van and had our pictures taken by the sign – pictures that I would’ve posted but I can’t find L  Then Lidia, who is much more outgoing than me, talked to an older gentleman standing by the garage and she asked if he knew Oprah.  When he told us that he saw her everyday and helped her out of the car, or something like that, we were like, WOW!!  We met someone who KNOWS Oprah!  That’s like two degrees of separation between me and Oprah!

Oprah had a huge impact on our culture over the past 25 years.  People have learned so much  by watching her show and, I think, maybe the world is a little kinder because of her influence.

There was life before Oprah and there will be life after Oprah.

Just make sure that life is “your best life.”