My friends get it, even if others don’t.

I just had to write a 600 word news article for my news research class. The article was on observations and we had to write about something that we have observed. While there was a barrage of things that I could have potentially written about, I chose to write on my favourite topic: Disabilities. Well, to be more specific, my topic was how the public perceives those with physical disabilities. You may not realize if you don’t have a disability, but coming from someone who does, there are many misconceptions and prejudice out there. We get stares, double takes, laughs, etc etc on an almost daily basis. So much so, that it doesn’t even really bother or faze me anymore. I actually have become numb to it and I don’t tend to notice. Obviously some encounters are worse than others, or more memorable.

A short anecdote here that just crossed my mind, I was at Shoppers Drug Mart (equivalent of CVS and Walgreens in the States) with my mom. She had to go pick something up somewhere else I think she I said I’d just wait there and shop a bit. Well, I was just browsing the aisles and was walking toward the pharmacy. I noticed a group of about 5 or so kids (probably teenagers) sitting in the pharmacy area waiting for something presumably. I noticed one stand up and look my way then he sat down. Then they ALL stood up, looked my way and laughed. And if you think I’m being paranoid and they were laughing at something else, well.. I was looking at hair brushes or something like that and I noticed two of the same kids following me. As soon as I turned and glared at them they ran back to their buddies and I heard them all laughing. I am not telling this story because I was hurt or sad. Quite  the opposite actually, I really felt like punching their faces in. I tell this story because this is what people with disabilities deal with. These are the stories that we are too embarrassed to tell. Mine was not an isolated event. I know it has happened to others because it has happened to me multiple times. I interviewed my best friend for my news article that I just wrote and this is in part what she had to say. I hope it is okay that I share this because it really meant a lot to me.

“When I was in High School, I noticed a girl who lived on the same street as me. We would frequently take the same bus, walk mere yards away from eachother, but because she looked different, I didn’t know how to approach her. A few years later, we ended up in the same English class. At first I didn’t know what to say, or how to approach her. I quickly learned though that, yet again, how society perceives disabilities had greatly affected what I thought. It turned out it wasn’t a mental disability, just physical. Just like my friend who had be constrained to a wheel chair. But because I didn’t know, I was ignorant and assumed. That girl is now my best friend. She has opened my eyes to disabilities of all types. People say things about people, how they look, speak, and think. But just because someone isn’t the same as me, or anyone else, doesn’t mean they don’t feel and think in their own way. Some of these people are so much more human because they have been looked at differently. Because they have experienced life in a way that the majority of the world could never even understand.” I know this to be true because we’ve talked about it, the girl that she was afraid to approach was me. And yeah, now she’s my best friend. I have to wonder though, how often this happens. How often are people afraid to approach or talk to me? Does it happen at college? I’m not going to lie, college isn’t as fun as people said it should be.. I wasn’t going to share that because I am a little ashamed of it (in society, being popular is key, I guess) but I promised to use integrity when I started this blog and I promised not to leave things out. This really is to raise awareness of everything that having a disability entails. Yes, I talk to people in my classes, they talk to me, noticed my new tattoo, asked about that, etc etc. In terms of having people to hang out with outside of class, not so much. My roommate and I are becoming pretty good friends I think so that is good.

Anyway, my Mac is about to die and my charger is back in res so I better get back and plug it in. I just wanted to say how completely grateful I am for my friends and the people in my life that totally overlook the whole Moebius Syndrome deal.

Please remember, if you see someone with a disability, don’t be afraid to approach them and say hi. I am sure they would appreciate it. Just as any “normal” person would.

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Just had a total epiphany.

I was just sitting at my computer, looking at an assignment that I have to do for one of my classes, and I had a total lightbulb moment. It totally just dawned on me, and maybe I knew it before but now I am blogging about it. I know I have blogged about how people perceive those of us who look different but this totally relates to my tattoo experience the other day. Like I said in my tattoo post, my tattoo artist guy was super nice, made sure I knew what he was doing, when he was starting the tattoo, etc. Annnd he may have been super hot too. BUT that’s beside the point and we’re getting off topic (but he was).

I know I kind of touched on this in my blog post yesterday but I feel the need to revisit it. I mentioned that I didn’t say much to this guy who was doing my tattoo, even though obviously I could have. I said yesterday that it was for the fear of him not understanding me, and that is partly true as it is with every new person I encounter. But now, there’s a new element to add to this saga. It was his perception of me that I think I was partly afraid of, or what I assumed his perception of me was. That perception may have been that I am mentally challenged (as some people assume) or that I wasn’t the type of person that he usually worked on. I’m not saying that he had either of these perceptions. He could have been completely indifferent, I don’t know. But what I do know is that that’s one of the reasons that I didn’t converse with him much. That and the whole speech dealio.

You’re probably reading this and wondering why I wasted 10 minutes of your life with this endless, pointless, rambling tangent that I just went on. I do apologize but I had to blog about this.

So, I’m looking for advice, suggestions, comments, etc etc as always! How do I shake this? How do I totally overlook whatever perception that I think someone has of me and act totally normal around them? I’ve never been one to be able to strike up a conversation but I would love to be able to change that!

What if I’m on the wrong path?

I will start this blog by saying that I hope that I don’t sound like a hypocrite here. I know how I preach about people with Moebius being able to do anything they want and being just as able, maybe more so than “normal” people. I am in no way wavering from that whatsoever. That is still my firm belief and I will not stop saying it. It is true and everyone with Moebius has to believe it.

This is just a personal dilemma for me and while it does stem from having Moebius, I think it is my self- confidence that is lacking here. I am wrestling with wondering if I am in the wrong program at school. I love journalism. The writing part of journalism. I hate the having to interview complete strangers, and I just don’t have the confidence to do it. For two of my classes we have to write news articles and obviously with writing news stories you have to interview people. That is one of the things that we are marked on.

I just like, physically can not bring myself to walk up to a random person and be like “hey can I interview you?”. Yes, it is the Moebius that causes speech to be hard to understand and yes that is why it is hard for me to interview people. But, having said that I know people with Moebius who are teachers, or who work in call centres. Conversing with people can be done, and they prove it on a daily basis. It’s my self confidence that is absolutely shattered.

I guess I didn’t really think about this before I got into this program. I just knew that I loved to write and that is why I chose it. I don’t want to do the newspaper reporter thing, that’s not my career path at all. I definitely feel like I should have done more research on the program before jumping blindly into it.

Please don’t think that I am complaining, although I know it sounds like I am. I like the program, the teachers and the people in my classes. I don’t have a quarrel with any of these things. It’s just the interviewing bit that is really setting me back. I have a paper due on Monday for my news research class. Obviously the biggest part of news research is interviewing people, For this paper it can basically be written on anything but we have to have at least one face to face interview along with two other interviews which can be phone, Facebook, etc. I am inclined to interview one of my friends or even my roommate but I feel like that defeats the purpose. The purpose is to get us used to interviewing people, is it not?

If you have read my blog from the beginning or even for the last few months, you’ll know that I have a thing about talking to people that I don’t know. Mostly on the phone is my issue, face to face is actually easier for me to do. However in this case, just walking up to a random person and being like “can I ask you a few questions?” and having them give me that blank look that I am all too familiar with is not how this is going to work. What can I do though? Make up interviews and names? I don’t think so. I sent all of my teachers an email and explained the Moebius and explained my trepidations with talking to people at the beginning of the school year. The thing is, I don’t want special treatment. I don’t want to email them every time I have to interview someone for a paper and be like “I can’t do it. I know the rest of the class has to but I can’t.” So I don’t know what to do. And you may say just do it. Just go up to someone and interview them, it’s not that hard. For me it is though. It’s a sensitive subject, really.

Like I said, I really don’t know what to do. How do I improve the situation? Do I email my instructors and tell them that I am struggling, yet again? I really don’t know.

And as far as that goes, as you all know from my blog post yesterday, I finally got my tattoo. I am so happy with it and happy that I got it. The tattoo artist guy was awesome and really nice. My friend came with me so that made it easier but I had that thing again where I didn’t say much to him for the fear that he wouldn’t understand. In case you can’t tell, this happens a lot. I want to be able to chat easily with people and have conversations about the weather and stupid things like that. I’m so freaking self conscious of the way that I talk, it’s impossible. Like, what do I do? Seriously. I have another tattoo appointment booked in two weeks and also a consult for another tattoo that I have a half idea for. Obviously I have to talk to the guy. What do I do? How do I ever get over this unrelenting fear of talking to people? Advice? Comments? Please do let me know!

As always, please feel free to comment and give me your thoughts, ideas, advice, whatever you want to say!

First Tattoo!

Hey all!

So, today was the big day. I got my first ink! I was super freaking scared (and my friend can attest to this) but it ended up being fine. The tattoo artist guy was really nice and so that made the whole process easier. The pain wasn’t too bad although I can’t imagine sitting for a whole sleeve or something like that. Anyway, this is the finished product:

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It’s on my right upper arm and says “This above all, to thine own self be true”.  For any Shakespeare fans out there, you’ll know it’s a quote from Hamlet.

The reason behind this tattoo is that basically, having Moebius can make us feel like we can’t do what we want in life. Sometimes we feel because of our differences, we won’t get our dream job or we won’t find someone that will love us despite our differences. This is to remind me every day and to remind all of us to stay true to ourselves and go after what we really want in life.

And I may or may not have another tattoo booked for November 8th. Ooops.

Remember, always be true to yourself.

On a completely disconnected note, I met someone that works at the college that I go to who reads my blogs! It’s a small world! So honoured to meet you and thanks for reading 🙂

My best friends.

 

One of my best friends and I did a photo shoot yesterday for my photography course. We took a bunch of pictures but these are a few of my favourites. I don’t know where I’d be without my best friend or my pony. They both mean the world to me and are always there when I need them! And one day, she’ll magically make Chad Kroeger appear. This is my thought process, people. It’s my goal in life to meet him because I freaking love him so don’t even judge me.

 

Anywho, thanks for helping me with this, Sam and thanks for being the best friend ever!

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Why we strive to raise awareness.

Hey blog friends.

I am going to preface this by throwing a warning out there that this may be one long post. I will try to make it short and as non- redundant as possible though.

So, I had a job interview last week at the college that I am attending. Now, I’m not going to lump us all together but I think for those of us with Moebius any kind of interview, especially for a job is stressful. I’m not going to speculate what others may feel but speaking personally it is awkward. I feel like they’re wondering what is wrong with me, etc. On my resume I have that I have been on the news and developed a brochure on Moebius so that breaks the ice somewhat. At this particular interview, I actually felt a little more relaxed because the people that were interviewing me were super nice. They nodded when I spoke so I felt like they were understanding what I was saying. I know it sounds weird but we rely on seeing other people’s cues to gauge whether they know what we are saying or not. I’ve learned how to do this over the span of my 22 years. Then, my blog came up and the lady interviewing me said that she had never heard of Moebius before she started reading my blog. This didn’t faze me at all; most everyone I meet for the first time have not heard of Moebius. Even a lot of doctors have never heard of it, much less seen someone with it. So when she said she hadn’t heard of it, it didn’t really bother me. I actually didn’t even think twice about it, I just said “no worries, that’s a common reaction” like I always do.

But now I’m thinking: what if we could change that? What if we could live in a world where Moebius Syndrome was in the spotlight as much as cancer? Not trying to take the light away from cancer and I am definitely not comparing the two but everyone knows someone affected by cancer. That’s not a good thing at all, but people know what it is. I hope people know what I mean here, that might have been a really bad analogy. I just lost my grandpa to cancer so I know what a bastard of a disease it is and how much we need a cure. I could do an entire blog post on how much I hate cancer. It infuriates me.

Back to the point, though. What I am saying is that we need so much more light shed on Moebius. I want a world where we didn’t get weird stares or comments from doctors or nurses like “so what exactly is wrong with you? What causes you to talk that way?” I really do try to strive for that in my every day life. I am doing everything I can to raise awareness but there has to be more that I can do. There has to be things that I can do that will reach people on a much larger scale. I am at a wall though and I don’t know what more to do or where to turn for help in doing this. What I am doing now is not enough, not to me. I know I am reaching people through my blog and educating that way but I want to reach so many more people. I want everyone to know what Moebius Syndrome is, but mostly I want them to know that we are no different from anyone else, we just look and sound a little different. This is the most important point to me. I know that the majority of people I meet think that I am mentally disabled because of how I look or sound. This is hardly the case, not only for me but for all of my friends with Moebius. There are very intelligent Moebians out there. One of my good friends with Moebius is even a professor! I feel like people tend to write us off a lot of the time as not being as able as “normal” people. I am tired of this. I am not doing this just to benefit myself, not at all. I want to do this to benefit everyone with Moebius but especially the next generation of Moebians. I don’t want them to have to deal with the things that I have dealt with or see the things that I have seen. Its my life’s top ambition to create a worldwide campaign to raise some much needed awareness. I want all doctors to have information and education so that they don’t have to ask patients awkward questions, like essentially “what is wrong with you?”. There HAS to be a way to do this. I will need some help but I will make it happen. I just want a better life for everyone. I know that life is what you make of it but a little awareness can go a long way.

I am posing this question: What are some surefire ways to raise awareness on a large scale? i’ve been interviewed on some local news stations and had an interview in a small local paper. But there has to be more that I can do. I am just out of ideas and I KNOW that you blog readers have some amazing ideas so please please do comment and let me know!

I am on a mission in this life to raise awareness and I won’t top fighting for it!

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I think it’s just my pride.

I hope that you guys aren’t bored of my endless ramblings about living life with Moebius Syndrome and all of the challenges that it brings with it. I really do not want to bore anyone, my intent is to inform and to rant a bit. This blog is my outlet and I must say that I am so glad that I started blogging. It’s a great way to raise awareness while also getting to write as much as I need to about what’s happening. Writing is such a great, calming outlet.

So, onto tonights blog.

My sister made a blood donation appointment for tonight for her, my dad and me. Well it ended up that she was sick today so she couldn’t donate. My dad and I went anyway, as I have always wanted to donate blood. I think it’s an amazing thing to do and everyone should definitely do it. The need for blood is so immense. Anyway, I went through the registration fine, got my donor card, they pricked my finger to check hemoglobin levels and everything was fine. A nurse then took me back to an office to do the screening process to find out if you’re eligible. She asks my name, date of birth and phone number. She then looks at me and goes “so, what do you have that is causing your speech to be different?” or something to that effect. I was a little taken aback, not going to lie. I’m not really used to being asked about it. I explained about the Moebius, and she immediately told me that she didn’t think I’d be giving blood today but she would go through the process just in case. She asked me all the questions, took my blood pressure, pulse, etc. At the end of all this she said I wouldn’t be able to give blood but she would fill out a form to send to my doctor to see if I was eligible. I know that they have very stringent guidelines and i totally understand. Your blood is going to go into another person, possibly someone who is very sick so the blood has to be pristine. But I did not think that a neurological condition had anything to do with blood. LIke, you can’t catch Moebius Syndrome. Anyway, she is writing on the form and writes “difficult to understand her. Speech is..” She asked me how to describe my speech because it is difficult to understand. She then went on to say “Although, it’s not too bad. We are communicating fine. You just have to focus and listen very carefully”. She then decided to go with muffled. Fine, I get it. She wasn’t saying anything that was untrue and certainly she didn’t have to tiptoe around the elephant in the room. But everytime anyone brings it up it is awkward for me and I feel like less of a person somewhat. No one could really know what it is like until you’ve experienced it. This nurse was pretty nice, and it’s not like she said anything that was untrue but I felt judged and looked down on. I don’t know why. I know it was not her intent to make me feel that way at all , nor should I have felt that way but I did. I hate this. Arg.

I went on with my night. I sat with my dad in the refreshment area and ate a cupcake. You have to sit there for at least 15 minutes after giving blood. We then went to Starbucks like everything was fine. I came home and immediately started to blog because I felt the need to.

Dealing with Moebius is hard, and every day is different. Some are really good and some aren’t so great. Tonight wasn’t so great but it’s something we have to deal with. I feel a little down tonight, but I think it’s just my pride that is hurt.

Hopefully there are better days to come, there always are.

Happy Thanksgiving weekend to my fellow Canadians! Please do take a moment to reflect on all that you are thankful for. There is so much!

Some days are infinitely better than others.

So, it’s 2:30 AM and I just got home. I don’t stay out this late ever.. But I had the most amazing last 10 hours!

It started off by volunteering at an event called Light the Night which was for the Leukemia and Lymphoma Society of Canada. It was an amazing event. I was working behind the incentives table, giving people who had registered and raised money lanterns, shirts, hoodies, gloves, etc. There were three colours of lanterns; gold, white and red. Gold was for if you were walking in memory of someone who passed away from blood cancer, white was for survivors and red was for walking in support of someone with cancer. The most emotional time for me was when a mother came to get a blue shirt (for survivors) for her four year old daughter who has survived cancer. Four years old and she has beat cancer.. I mean, think of all she has been through in her short 4 years. It really hit me. And there were thousands of people there. The most popular colour lantern was red. There were far too many gold lanterns given out but also a lot of white ones for survivors. It was an incredible event and it really goes to show that everyone knows someone affected by cancer and I believe that we will see a cure in our lifetime. I can only hope so. Also, after I got my volunteer shirt and lanyard, I was walking towards where I was supposed to go and I felt a tap on my shoulder. A girl that I had worked with at the Underwear Affair two years ago saw me and came to say hi. Not going to lie, I didn’t remember who she was at first but then she mentioned the Underwear Affair and I knew. We hung out a bit after the event and she gave me a ride to where I was going. Such a nice girl, I was definitely glad to see her again!

So while I was working there, a friend texted me and said let’s go out. Come to this club because her sister’s friend’s band was playing. I made it to the club after going to the wrong place (oops) and it was AMAZING. The drummer who is a friend of my friends sister came and sat with us between sets and he was gorgeous. Everyone was dancing and having an awesome time. It was an amazing day and I am grateful for some pretty amazing people.

My ears are ringing and I think it’s time for bed.