Used to it.

I know that I have blogged about this before so I won’t go blog crazy here but I noticed something today. I went to apply at a few places for a job for the summer. I need a job but am not getting any callbacks so I am getting a little desperate.

Anywho, after I went to take my resume in, I went to the Starbucks nearby. I contemplated what I was going to order and decided to go for the green tea frappuchino. I said it three times and the guy still wasn’t getting it. He went to the screen thing to try and figure out what I was asking for. He then went to get someone else. I said it a couple more times and she finally got it. Obviously no one made a big deal of it or anything, but I noticed a change in myself. I think if this had been a year ago, I would have been humiliated and focused on the ordeal for days to come. I wasn’t that phased by it. I got my drink, got in my car and drove home. I didn’t actually think about it again until now, sitting here writing this blog. I mean, it’s a bit embarrassing to have someone completely not understand what you are trying to say but I guess I have gotten used to it. This has happened more times than I could ever count so I think I kind of expect that people won’t understand me now. Normally that’s not the case but today it was.

The message here is perseverance. Don’t get flustered if someone doesn’t understand, and don’t change what you are trying to say or order. Keep repeating and write it down if necessary. It might make you feel self conscious to do that but hey, who cares what others think. I have learned to stop caring what people around me say or think and start living for myself, pushing for what I want or need. I mean this in the sense of having Moebius and what other people think pertaining to that. Obviously we need to care about others and take their needs and thoughts into consideration, unless they are negative. As people with an obvious physical difference, we do not need that added stress in our lives.

To those with Moebius or other differences, never let others negate or destroy your self worth. Hold your heads up high because you are beautiful and have just as much right to walk on this earth amongst everyone else. We are not the only ones who struggle with self worth and we will not be the last. Keep your self worth close at heart and don’t let others destroy it!

Also, a mention for the people of Alberta. It has been exactly one year today since the southern Alberta flood in 2013. I remember that day well, as I too was impacted by the floods and was evacuated via combine. The resilience and compassion of this province is outstanding. We made it through. There is a lot of work still to be done but we made it through. Continue to support your neighbours if they are in need. Proud to be from this amazing province.



One of the definitions for the word oblivion is as follows,

the state of being completely forgotten or unknown

The state of being unknown. This is what I fear.

One of my best friends and I saw The Fault In Our Stars tonight. It is one of my all time favourite books. One of the things that Augustus Waters fears is oblivion; being completely unknown to the world.

Why do I fear this? While I am not dying of cancer like Augustus, I feel like I am living in a state of oblivion. No one in the world apart from my friends, family, teachers and fellow students know who I am. They don’t know my name. Not that I believe that being famous is everything, nor is that what I want. In terms of people knowing my name, in a way, I do want this. Why do I want this? I want it because I want people to know my quest; I want people to know that I am trying to raise awareness of Moebius syndrome. I want the word Moebius in the news, on TV, in magazines and newspapers. I want the world to know what this is and why it is important to know what it is. Why, you ask, is it so important? It is incredibly important because when the word Moebius syndrome is commonplace in society, those that have Moebius will not suffer. They will not suffer from looks or stares or points. They will not be asked uncomfortable questions as “why do you look like that? Is there something wrong with you?” I have been asked that, in those exact words. Does it hurt? It used to. I have gotten used to these kinds of questions and comments. It has happened more times than I care to recount.

Raising awareness and getting the words Moebius syndrome out to the masses will, I hope, relinquish all of the negative actions towards those with Moebius or with any physical difference.

I feel oblivion because I have now applied for dozens of jobs for the summer. I have not heard back from any. I even took my resume in somewhere and talked to someone who said they were doing interviews at the time. I never heard anything back. Is it because I have Moebius and I look and sound different? I can’t say for certain but I imagine it does play a role. I need a job. Will no one take a chance on me? It angers me that employers would negate all of the positives that I could bring to a company solely based on the fact of how I look or sound. Am I not good enough? I’m asking for a chance.

One more reason that I feel oblivion. And it’s a lame one, I do admit. I am so completely enamoured by someone who I will not name. My close friends know who I mean, as I can’t stop talking about him. I feel oblivion because he doesn’t know who I am. I have met him a few times but I can say nearly for certain that I do not cross his mind. As with every guy I have ever had a thing for, I don’t even bother pursuing it. How in the world could they ever be interested in someone like me? Someone who looks and sounds different than anyone, who is not at all attractive. When they could have any girl they want, why would they want me? I know that this is a shitty way to look at things, but when I started this blog, I swore that I would tell things exactly how I see them as this is a blog about Moebius syndrome and all of its facets. This is all exactly as I feel right now. I’m not saying that these feelings are right or wrong, but they’re the feelings that are eminent right now.

I fear living in oblivion, I fear that I won’t leave an imprint on this world. I am striving to make a difference, it is all I have ever wanted to do in this life.

I vow to work hard and get my voice to be heard. One day there will be no stigma attached to having Moebius syndrome or any other disability or physical difference. In the words of the brilliant Maya Angelou-

“But still, I’ll rise”