Living with Moebius and everything that goes along with it.

So, today one of my friends asked me ‘How did you get through having to have so many surgeries?” Well, that made me think. This blog might really be terrible as it is my second blog of the day and everyone might be sick of hearing my thoughts now. Too bad, people. You give me a platform and I can go on and on. But I would love for you to finish reading this, however long it may turn out to be. This whole blog was supposed to be about having Moebius but as you know, sometimes I go on tirades about other things.

Back to the original question, though. I think I got through them because the first surgeries that I remember were when I was 5 and 6 years old. I had the “smile surgery” at the SickKids hospital in Toronto. I had to go back twice to have both sides done seperately. For anyone who doesn’t know what smile surgery is, it’s when (in short, short terms) they take muscle from your thigh and implant it into your cheek so that you have the ability to smile. Being that I have Moebius, the nerves in my face are paralyzed so obviously, I didn’t have the ability to smile. My smile now still doesn’t look like a “normal” smile but at least it’s a semi- smile. And it’s the only expression that my face has, sooooo.. I appreciate it. No I can’t grimace, furrow my forehead in thought, wrinkle my nose, purse my lips, or show expression when I laugh or cry. Does this make me less of a human? Well maybe to some and maybe I thought that way back in the day (okay.. not so long ago) but now I don’t care what others think. At least I try not to. What people with no adversity in the form of physical differences don’t realize is what it feels like to be stared at. I mean, it’s not a passing glance in every case. Sometimes, walking in a store or in the mall, people noticeably turn their heads and stare while they walk. To be honest, it doesn’t really bother me anymore. It used to, for sure. But now I just say (well I won’t say exactly what I say to myself on here) screw it. Why bother giving them the time? If people are too ignorant to have a filter on what they say or do then I don’t really care. The only people whose thoughts I care about are the people close to me. I want to be a good person for them and to make them proud so why should I care about people who don’t know me? I get through the surgeries because it’s just part of my life. There’s no use in trying to change it because I won’t. I just have to deal with them and get through them. And it gets easier after a while.

I’m getting way off topic here. Back to your scheduled Moebius blog.

So along with not having facial expression at all, I also don’t really blink. You now what that means.. don’t challenge me to a staring contests. My friends know that it’s a futile effort. You won’t win.

I’m going to address the one part of having Moebius that still makes me uncomfortable. I’m not going to go on and on about it because i don’t enjoy speaking about it or bringing it up. My speech. This is a sore spot, so to speak, for me. Yes, I admit that I am hard to understand sometimes. Especially to people that do not know me. When I had to call my doctors office a couple weeks ago to confirm my new surgery date, I sat with my phone in hand for literally an hour trying to get up the courage to call. I tried to get both of my parents to call for me. They wouldn’t release information to them so I had to do it. I did, and it went fine. Good, actually. But this isn’t a new thing for me. I try not to have to call places, or people that I don’t know. I turn to email, where I know that my words will be understood. Talking to new people is absolutely my weakness. I can’t do it. I don’t know what it is. The fear of the awkward silence, I suppose. I think that my Moebius friends will understand. If you’ve never dealt with it, i don’t know if you’ll completely understand the feeling that not being understood brings. It’s terrible. But I mean, I just have to get over this, I know. And I’m trying, really I am. One of the worst things is when people speak slowly and louder and use simple words when talking to me. The look on their face tells me that they think that i have mental disabilities. Having Moebius, this is one of the things that I just know now. I can tell when people think this about me. No one, if you haven’t personally had to experience it, knows what it’s like. It’s humiliating, it’s sad, it lowers your self esteem even though you KNOW that they’re wrong about you. I wish i could be outgoing and talk to everyone but I can’t. That’s me. That’s Moebius. That’s what people have to understand. This is why I want to raise awareness about Moebius Syndrome, so that people do not have these misconceptions about us. I want things to be better for the future generations with Moebius than it was for me.

To be honest. when I was in high school I think i gave up a little. I was intent on the fact that I would never get a job anyway or amount to anything so why bother? Why bother going to class when I’m never going to be able to get hired to work with people. I mean, it may be true that it’ll be harder to get employed but i don’t have this attitude anymore. I fully am planning on going to University and getting my Journalism degree. Oh yes, surprise! That is what I decided on doing. I love writing and expressing my views, as people may very well know by now. And I’d rather do that by print rather than by verbally speaking. I’ve talked to my friends and gotten their opinions and the opinions of others and they all say go with journalism. They comment on my writing and say that it is so good, so I’ll take their word for it and go for my journalism degree. I think that only good can come out of it, so I am going for it. I’m applying for school for the fall.

So, in conclusion. Moebius Syndrome is what i have. Yes, that is true. But I won’t let it define me. I have obstacles to overcome still, I always have. But I am going to overcome them. I am going to go on in life as if I don’t have Moebius. If people are uncomfortable with it, well though cookies. I can’t worry about what other people think of me anymore. At least, not the people who don’t matter. The people who do matter are my friends, my family and my horse.

To all the younger kids with Moebius (this part is for my Moebius family) I would tell them this. Live your life with Moebius just as anyone else would live theirs. Learn from my insecurities and don’t let them get you down in your life. Don’t go through what I did, it’s no fun. Life is just too fragile to waste on thoughts like the ones I had. We really can do anything that we set our minds to and don’t let anyone tell you differently. Moebius may make you look different but what fun is it to look like everyone else? And most importantly, you’re no different on the inside than anyone else and you are just as worthy. Don’t give up and always, always follow your dreams.

To learn more about Moebius Syndrome there are a few different websites. I would love to pass them along so that everyone can be educated on Moebius, in hopes of creating a more tolerant world. For everyone. Don’t judge people on what they look like or how they talk. This doesn’t go for only us with Moebius, it goes for absolutely anyone. Everone is worthy of respect.

These are the Moebius websites that i want to pass along.

Thank you to everyone who read this monstrous blog. I really do appreciate your time. There’ll probably be more Moebius blogs because I know that I haven’t said everything about Moebius. I have almost 22 years worth of experiences with Moebius!

“Our past does not define our future”.


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