Sleepless Nights, Slightly Better Days

So, I have this new thing where I can’t sleep at night. Yeah, it’s great. I’m just a university student. Why would I need sleep? I’m awake till 2 in the morning and then wake up for an hour and then get like, another hour or two of sleep. This has been the trend for the last week or so. It is really starting to get to me and I am feeling the effects of the lack of sleep. Ugh. I just want a good nights sleep!

What better to do when there’s nothing else to do than blog? I feel like I need to be blogging a lot more. It’s a way to get my thoughts and feelings out and it is so incredibly therapeutic.

Big news first: I am going to be featured in Chatelaine magazine! If you’re Canadian, you’ll have heard of it. If you’re not Canadian, Chatelaine is a women’s magazine that is published in both English and French and is a nationwide magazine. They are featuring my story about living life with Moebius syndrome. I am super excited to see the article! I had a photo shoot this morning for the magazine, and it was amazing. I felt like a famous model. My best friend, who is a hairstylist, came to do my hair for the photos and it looked fantastic. I am so excited to see the photos and the article when it is published!

Another cool thing that is happening is that I got a message on Facebook a few months ago from a girl in the journalism program at the college that I went to. She had heard about my story and wanted to know if she could do a documentary about Moebius and how it affects me for one of her courses. I obviously said yes! What a fantastic opportunity and great tool to raise awareness! i’ve met with her a few times now and she is such a lovely person to not only work with but to just hang out with. I love people that don’t judge me or treat me different upon first meeting me, and she didn’t. So, on Sunday, we went out to where I board my pony Snapple so she could film some video footage for the documentary. It was such a fun day. I got to spend it with my pony and two amazing friends. I am really lucky to have the people in my life that I do. I don’t know where I would be without my lovely friends who have never given up on me and support me no matter what. When I think that I can’t go on, they are there to tell me that I can and for that I am grateful.

I know I mentioned this in my last post, but I am continuing to see a psychiatrist at the university. Honestly, two years ago, I would not have been able to admit that to anyone nor would I even probably be seeing him. There is still a stigma connected to mental health and while I can say that I don’t understand why, that also makes me a hypocrite. Even saying the word psychiatrist is taboo to most people, myself included. A lot of people don’t want to admit it. I don’t fully understand why it is such a taboo topic but mental health is so incredibly important, we need to bring it to the forefront. People need to know that there is NO shame in seeking help. I couldn’t do that for the longest time because of the stigma that continues to surround mental health but I finally did. I could not be happier with that decision. I am not going to lie, I have seen some pretty shitty psychiatrists. Maybe they weren’t actually shitty but I just did not get along with them and I find that chemistry is so important with therapists, psychiatrists included. If you don’t get along with someone or don’t like their vibe, you’re not going to feel comfortable talking to them. I am so incredibly lucky that the psychiatrist at the university is freaking amazing. So personable, relatable and laid back, which is honestly what I need if I am going to spill my deepest, darkest secrets to someone. I never feel judged by him, ever, even though I feel completely nuts when I tell him some of the stuff that I tell him. It’s such a relief to have someone to tell these things to, because some of the things I have said to him, I have never told anyone else. Why? Because of the stigma. I felt crazy, and honestly still do at times. I am in a constant battle with myself, day in and day out. Literally. It’s like my brain is against me. This is why I participated in the Canadian Mental Health Association’s #NowImStronger campaign, which is meant to bring mental health to the forefront of everyone’s minds and to let people know that there is no shame in talking about it. Mental health is just as, if not more, important than physical health and it is time to start openly discussing it. Everyone needs to know that if they need to seek help, there is absolutely no shame in that. I can’t stress that enough. It might take a few tries, but you will eventually find a therapist that you will connect with and who will help you immensely. I don’t know where I would be without the support of my psychiatrist and I hope he knows what a fabulously amazing person he is. I feel like I’m gushing a bit here but for real, he has changed my life and my outlook on life. I still struggle daily but just the fact that I know he’s there and knows what’s going on is a huge relief for me. How do you thank someone for giving you your life back? I feel like this is what he has done for me, despite some of the struggles that I continue to have. I’m so grateful to have someone like him in my life, i honestly can’t stress that enough. My point here is that if you need help, please seek it. Don’t ever be ashamed.

That’s what’s been going on lately. Just university stuff, and my awareness campaign for Moebius which continues with the article that will be in Chatelaine! I could not be more happy or excited.

To my friends and everyone who has supported me along the way, thank you. I would not be here without you. I would not be the person that I am. I’m proud to be on this mission to raise awareness of Moebius and that will never change.

Find your passion, have goals and never lose sight of who you are and who you can be.

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!

First Impressions.

I’ve been asked to do a blog about a couple of different topics. The first one that I am going to do is this one on first impressions and having Moebius. As we all know, first impressions are what people remember about a person. It’s always important to give a good first impression whether it’s a job interview, first date, etc. You make sure you look presentable, you may rehearse what you’re going to say, you might have everything planned out. Well, having Moebius, I think a good first impression is even more key and not only that but for those of us who live with Moebius, it is a lot harder to give a good first impression. Many may not agree but I’ll tell you why I say this. For people who don’t have a physical difference like Moebius, all you have to do is be polite, dress well, say the right things and that would normally make for a good first impression. For those of us with Moebius though, even though we have dressed well, been polite, etc those same people may look at us and wonder what was wrong with us, if we have mental issues and things like that. We are usually judged solely on how we look on the outside before even opening our mouths. And then when we do open our mouths to say something, for those of us who have speech issues, I think many people are taken aback by our speech when we first meet them. Maybe they can’t understand what we’re trying to say, or maybe they are wondering if we have mental incapacities. I know as soon as someone thinks this about me. They talk really slow and like they are talking to a 5 year old. Being judged on appearance and speech is not only difficult but it makes it hard to give that wonderful first impression that we all strive for when meeting someone for the first time. I can’t speak for others but for me, job interviews or anything where I to interact with someone for the first time is the hardest part. Meeting someone for the very first time is always the toughest part because they may not be aware that there are any differences until they meet you and they may be taken aback.

I think that it is human nature to wonder about people who look different on the outside. I’m not saying that I blame people for wondering if I am mentally disabled or whatever but this is the very reason why I write this blog. I feel (and hope) that by getting my story out there, by getting our story out there (those of us with Moebius or any other physical difference) we will change the world’s mind about us. My hope is that in the very near future, we won’t feel like we are ostracized. People won’t wonder if we are mentally disabled when they meet us. They will know that we are just as or more capable than everyone else on this Earth and we all want the same things: To be successful, to be loved and above all to contribute something to this world. And that is what I hope this blog is doing.