“And how do you spell that?”

I know I said I was going to do a Q&A blog next but a new-ish topic came up today. I guess that it’s not a totally new topic as I have blogged about it before but it happened again today. I went to Starbucks, ordered my usual (non fat iced white mocha with no whip) and the guy asked what name he could put on the cup. I said my name, there was that awkward moment of silence and then the “and how do you spell that?. He tried to make the situation less tense by saying “I always forget the 3 before the y, that’s why I asked” but I knew the real reason. He didn’t understand what I had said. It’s not his fault and he was not awkward about it and tried to diffuse the situation but I just am tired of this happening. Like, I kind of dread them asking what name to write on the cup because it’s so awkward when they don’t understand. I know it is such a silly thing to get upset over but I am just tired of it. I don’t know what I can do to change it, as it is my tongue that is partially paralyzed and I don’t really think there is much to do for that. When I am somewhere and they need my address, I normally pul out my drivers license so that the awkwardness is avoided, they can just see it and I don’t have to see this. I am sure that I am not the only one with Moebius who goes through this, I just don’t know how to deal with it. It doesn’t bother me half as much as it used to but it still does a bit.

Moving on, my college orientation is tomorrow. I am kind of excited but also nervous. Probably more nervous than excited. I think I make more of a big deal of my looks and speech than I should. Maybe it doesn’t really matter to others, maybe people don’t really even care. I just feel like all eyes are always on me and people are wondering “wow, what’s wrong with that girl?”. It shouldn’t matter. I should just go, learn and find out everything about my new school. College is the next chapter of my life and I want it to be as great as it can be. I’m just nervous about what others think, as I always am. How do I shake this off? How do I go to this orientation, meet my professors and fellow students? I just want to be able to talk normally to them and become involved in the college community but I feel like I am going to be held back by my speech mostly.

“If you don’t like something change it; if you can’t change it, change the way you think about it.”  ~Mary Engelbreit

This is a great quote. I know that I can’t change how I speak or the things that make me different, but I can change how I deal with it. I need to essentially forget that I have any differences. I need to go to this orientation tomorrow and not feel shy because of these things. I need to talk freely to my professors and fellow students. I am excited to start this new chapter of my life. I think everyone is nervous, obviously including me but I can get through it. My thought process tomorrow will be this: Yes, I have differences from others but everyone is different. I will put this behind me, I will talk to people like I am the same as them. I will meet my professors and be strong and courageous. There are a lot of other people with Moebius who have gone through this and continue to go through this and I will make the best of it. Failure is not an option.

So again, I will end this blog post by asking for your opinions, advice, thoughts, questions, whatever! Please, please feel free to comment. I am still looking for questions for my Q&A blog too. If you have any questions about Moebius, living with a rare condition, etc please do comment and ask!

“Damaged people are dangerous.  They know they can survive.”  ~Josephine Hart. Not saying we are damaged, but damn, we can survive anything!

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Better way to raise awareness?

Most of the readers who visit my blog on a regular basis know that the aim of my blog is primarily to raise awareness of the rare neurological condition that I have, called Moebius Syndrome. Some of my posts may not relate directly to it but I try very hard to make sure that most of them do. It’s important for me to be totally transparent and document things that I may be embarrassed by (relating to Moebius) because that’s part of raising awareness, showing the struggles that we with Moebius face on a daily basis. 

So, having said that, I share this blog on Facebook and Twitter maybe a little too much. I tweet at anyone who will listen and I fear that it may be annoying to some of my followers. Although, as I am typing this, Lance Bass just RT’d me so that’s pretty awesome. 

So my question to you, dear blog readers, is this: What is the best way to raise awareness of Moebius and where is the best place to share this blog so that people can read more about it? Please, if you are reading this, I would really love some feedback! 

In case you’re new to my blog or as a refresher to those of you who aren’t, here are some links where you can find more information about Moebius Syndrome. I really encourage everyone to visit them and learn more! 

http://www.moebiussyndrome.com

http://www.manyfacesofmoebiussyndrome.com

And if you want to follow me on Twitter, I am @CanadianDuck007

Thank you all so much!