Ellie Vs. Her Face

This is going to be a hard one to write. But here we go.

I was born with a jaw deformity. When I was an infant, it wasn’t obvious, mainly because I didn’t have teeth and I had a tiny, chubby face, as babies often do, so I didn’t exactly have a jaw line. Then when I was four, I was sitting in the rocking chair in my grandparent’s living room, talking to someone I can’t exactly remember, and suddenly, I stopped talking. But my mouth stayed open. My jaw had locked, and I couldn’t shut it. That I do remember because I was terrified. I was taken to (I think) a dentist who was able to help me, but warned my family that I would have more dental issues, because something with my jaw was very, very wrong (This is starting to sound a lot like the beginning of Frozen).

When I was about seven, I went into orthodontic treatment. My teeth were all crowded and crooked, and there was very clearly a problem with my jaw. Only my very back teeth touched; two on the top touched two on the bottom. The rest were separated by a massive gap big enough to stick my tongue through it and still have room. I also formed a habit of constantly stretch my jaw every few minutes, otherwise it felt like it was tensing up. It’s much like cracking your knuckles, but cracking your face instead. My siblings told me not to do it because I was embarrassing, and not to smile in pictures because it looked awful. They also started to regularly say I looked like a fish every time I would have to stretch, but as much as I tried, I could not help it. The best I could do was cover my mouth when I did stretch my jaw to pretend I was yawning. But as I got older, I started covering my mouth every time I smiled and laughed, too.

During my orthodontic experience I had all sorts of contraptions that looked like medieval torture devices. I had two in particular I remember more than the rest: One was a retainer permanently put in my upper jaw, meant to stretch it out. Every night my mother had to take a tiny key, put it in the little slot in the center of the contraption, and turn it. I cried and I screamed and it was a nightmare. Another permanent retainer I had was a standard plastic one like many of the ones I have seen other people use, but mine was different due to the three wire spikes at the edge of it, meant to train my tongue to stay back. The spikes would cut into my tongue and make it bleed and sting. Like I said – medieval torture devices. And you thought I was exaggerating!

I dealt with numerous procedures, braces, and other types of treatment until I was 14, when the orthodontist said that the roof of my mouth had collapsed inward and that there was nothing else they could do. So, they called it quits, and so did I. I resolved to be doomed forever and deal with my speech impediment, my constant pain in my jaw, head, and shoulders, my breathing problems, and my struggle to eat and talk on a daily basis. I decided that I was just made wrong, and that I’d have to live with it.

Fast forward to me at 21, when my dentist suggested I have orthognathic surgery to try to fix the deformity. I was excited to think that I might have a chance to become “normal”. Saying I had low self-esteem would be beyond an understatement. Between constantly being made fun of by both my family and people at school, and even bullying myself about it, I generally feel like a science experiment gone wrong. So, I began the journey to find a surgeon. I went to 12 different surgeons, all who were shocked upon seeing how bad my deformity was, and told me they didn’t have either the expertise or time to deal with me. My favorite was one orthodontist, who I went to see on a rainy day. He sat me in a chair, talked to me, and when I opened my mouth, he called his entire clinic to come stare at me like a carnival act. In front of them all, he said happily, “Does your jaw effect your self esteem? Oh, who am I kidding, of course it does.” After his team were done poking me and ogling me, he said frankly, “I honestly wouldn’t have the time to deal with you.” He was the eleventh one I saw. I left his office, feeling like I had just been put through a wood chipper, and I sat in the rain and I called my best friend and I cried…and cried and cried and cried.

Finally, I was sent to UCSF. The orthodontists and surgeons were incredibly kind and understanding. They took me through the whole process of what it would be like to have the surgery. I’d have teeth pulled, braces for a year or two, then surgery which consisted of breaking my jaw and then wiring it shut, then more braces. It was daunting, and didn’t exactly sound like fun, but it felt like a chance at not only looking better, but having less chronic pain. I was getting excited. But that was stupid to do, because there was the problem of all my other health issues and the fact that I’m already in pain every single day with my jaw and neck. They also were unsure of how it would work considering my deformity was one of the worst they’ve seen. So, after months of me waiting, UCSF had a panel of doctors, surgeons, and orthodontists gather together to review my case and some others. A month later, in January, I was called back to UCSF because they had made a final decision.

That decision was not to do anything. And I was mad, and probably cried more.

They decided against not only surgery, but didn’t even want to give me braces for several reasons. One being that I would not be able to handle the increase of pain the entire process would take because of the pain I was already in, and also the fact that while they were sure they could close the gap and fix my facial deformity, the pain would not change, or could even get worse. They also were worried that since my Celiac Disease weakened my bones, my bones wouldn’t be able to handle manipulation and especially being broken and put back together. They said they were sorry, but that the best thing to do was, you guessed it, my least favorite phrase- find a pain management therapist and learn to LIVE WITH IT. *Flips a table*

So now, I do in fact live with the pain and the struggling and the hating of my face. And it sort of sucks. I don’t even look like anyone in my family because of my jaw. I didn’t think I looked like anyone, period.

But then, last night happened.

And I will write about it tomorrow, because I am officially sleepy.

To be continued.

Oh, baby, when you cry,

Your face is momentary,

You hide your looks behind these scars.

In hybrid moments, give me a moment.

Hybrid Moments- The Misfits 

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5 thoughts on “Ellie Vs. Her Face

  1. Omg. I just stumbled across your post. Amazing. I was born with a severe cleft lip and palate and have been through a lot but I can not imagine having so many doctors turn you down. And the fact that your own family made fun of you is so awful. My heart really goes out to you. I haven’t read your other posts yet but I will be back!

    Like

    1. Hey Heather, thank you so much for your lovely comment, not to mention it is the very first one on this new blog of mine! One of the main reasons I started this was so that people like you and I can relate to one another and feel a little less isolated like we sometimes do. Even if we aren’t dealing with the exact same thing, we can still definitely relate on a level that not all people can. I am sorry you’ve been through a lot as well. I am sure your road hasn’t been an easy one. My heart goes to you as well, and thank you so much for following me!

      Like

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