I’m just going to preface this blog post by saying that I do consider myself to be a strong person most of time time. Emotionally strong, not physically strong. Although, I can carry like 5 bags of groceries at a time but that’s basically because I’m too lazy to make more than one trip. Anyway, I don’t let my emotions get the best of me most times. And I don’t usually reach out to people to let them know that I am having problems. Today was not one of my finest days. I was supposed to go to a concert tonight with one of my best friends. She won tickets a few days ago and we were all excited and such. What I am about to say, I haven’t told anyone except her, so I can’t believe that I am blogging about it to the whole of the Internet. However, when I made this blog I vowed to be honest and document everything that goes along with having Moebius Syndrome so I feel compelled to get this out there in hopes that people will understand what it’s like to have to go through these things. Also, it just happens to be Rare Disease Day so we are trying to raise awareness of rare diseases such as Moebius Syndrome and the struggles that those of us living with rare diseases go through. So my friend and I were supposed to go to this concert tonight. Most people would be like oh that sounds so fun, I’d be so excited, etc. Well, I was kind of excited and I did want to go. However, having Moebius, I have really sensitive hearing. My family and I used to go to fireworks and I would absolutely lose my mind because it was so loud for me and I can’t handle loud noises. It’s hard for me because I love concerts and rock bands but the intensely loud music is too much for me to handle. It’s not just concerts though, it’s anything loud. It’s fireworks, it’s when cars accelerate obnoxiously loud, even when babies are crying loudly. I just can’t handle loud noises. So anyway, I’ve been having anxiety about this concert for the past day or so because I really want to go but I know that I can’t handle loud music very well. When I go to Nickelback concerts, I spend half the concert covering my ears. How lame does that make me sound? Extremely. Can’t help it though, it just comes along with having Moebius. The hardest part is not even having these issues. The hardest part is telling people. I hate telling people about my weaknesses or about things that I can’t do. It’s embarrassing for me and I want people to think that I’m fine, that nothing ever bothers me. Unfortunately it’s not always that way. I do have problems doing some things (like calling people on the phone, for instance. I know for a fact that is a direct result of having Moebius. And as absurd as it may be, I can’t help it nor can I get over it) but I can never tell people. I don’t want people to know these things. I keep them to myself because it’s embarrassing and I don’t want to draw more attention to myself and to the fact that I have Moebius. Moebius is something that makes me so different so I feel the need to pretend that I am just the same as everyone else and don’t have things that make me different. When people see me, I know what they think for the most part. They think that I am mentally incapable of doing things or they feel sorry for me. I know because people have actually said that to my face before. Sad but true. The way that people act around people like me is sad. It’s why I am on a mission to raise awareness of disabilities so that people will know that we are just as capable as they are. Yes there are things that make us different but mostly we are the same in that we want the sane things as others. We want to succeed, to live our dreams, to love and be loved. I know that we all have a mission on this Earth and I KNOW that mine is to raise awareness of disabilities and to be an advocate. You really don’t know what it’s like to live with something like Moebius Syndrome until you have. I can tell you all about my struggles and the issues that I have but I know in my heart that no one will ever truly get it, other than my Moebius friends. I am not in any way trying to make it sound like I have the hardest struggles. No, not at all. I know that there are people who have much, much harder times on their hands. I’m also not trying to complain, not in any way. My aim here is to raise awareness of what we go through on a daily basis. I also want people to know that just because we do have these struggles, it doesn’t make us any less of people. It doesn’t mean that we are incapable of living life to the fullest. It just means that we have different triumphs and tribulations than others.
Anyway, I am on a mission to raise awareness of all of this that goes with having a disability and also to raise awareness of disabilities themselves. I think that by doing this, the world will slowly begin to become a more tolerant place.
Live the life that you dream!
Today was Pink Day. A day where everyone in the country (hopefully) wore some pink in some way. I wore my pink North Face hoodie AND a pink belt. The belt was a coincidence, really. I just actually thought of that. We’ll pretend it was intentional. The pink hoodie really was intentional though. I want to let everyone know how against bullying I am and how much damage it can do. I have a rare neurological condition (which, if you read my blog you’ll probably know since that’s what this blog is about) and it has caused me to look different than others. I have facial paralysis. My eyes could not move at all when I was younger. Thanks to many, many surgeries I can now move my eyes side to side. My speech is different and hard to understand at times. This caused me to be bullied in school. It was really tough. The worst incident though, was in 2009. Someone on my Facebook friends list took pictures that I had posted and made a fake profile on another social media site. They posted some really derogatory, defaming things. The worst part though, was the comments that other people left. Horrible, horrible comments that really shook me up. Thank goodness for friends, though. Some of my friends reported the page and after a lot of reports, it was taken down. The damage was already done though. That one incident totally changed me. I deactivated my Facebook account for months. I feared everywhere I went that people were taking my picture to use in a defaming way, I sat on that social media site daily, checking the new accounts that were made to make sure that there wasn’t another one made of me. It was an incredibly awful time in my life. I was so stressed, I didn’t even want to leave my house, ever.
The bottom line here is that bullying needs to stop. Now. It’s not okay to make fun of other people, ever. It’s not okay to make someone’s life a living hell. It is NOT okay to make people feel like taking their life is the only way out. It’s not okay. Some people think that bullying is just something that kids do, that it’s not a big deal. Well, it IS a big deal. It has made many people take their own lives. It has made people live in anxiety, misery and sadness for much too long. It needs to end NOW. There are many things that you can do to help stop bullying. Lobby your government for anti-bullying laws. If you see someone being bullied, step in or tell someone. If you’re being bullied right now there is help out there! Talk to a parent or teacher. Go to www.kidshelpphone.ca or call for help. Please know that it will get better.
Bullying needs to end. It’s never okay.
It’s Rare Disease Day tomorrow, also. Trying to raise awareness of Moebius Syndrome and all other rare diseases for education and to help prevent bullying.
Spread love. Spread the message!
On Monday night, my dad and I went to see The Tenors’ concert. I have been trying to explain it to friends when they ask how it was. It’s hard to put into words. There are not enough words to describe it. I was absolutely blown away. I was moved to tears at a few points. It was one of the most incredible experiences of my life. I have never seen such pure, natural talent. It is unparalleled with these 4 guys. They are just incredibly talented. A talent like no other. They sang almost every song from their new album, including Forever Young which is my absolute favourite. When they were explaining the song’s meaning before they started singing it, it moved me to tears. And then they sang a song called Fare Thee Well Love. They dedicated it to a young girl who lost her battle with cancer not too long ago. That song didn’t move me to just tears, I was like, full out sobbing. It was absolutely beautiful. I can not express enough how amazingly incredibly gorgeous their voices are. Like I said, a talent that is not matched by most artists out there today. I’ve never been so impressed. That concert was definitely a highlight of my year, no doubt. They stories they told, the songs they sang, the talent that they have that is just so pure.. They are definitely worthy of every music award under the sun. They’re also really funny! Just such an entertaining concert. If you have the chance to see them when they come do a concert near where you live, please go. Please go and see them. I can’t say enough how amazing they are.
After the concert, I got to meet them. I was so, so nervous. I’ve been a huge fan of theirs for a long time and to see them standing in front of me was un-freaking-real. I literally almost broke down but I didn’t want to look like a weirdo so I tried to keep it together. They are just as amazing off stage as they are on. They are gracious and such sweet guys. I had a very short conversation with them, told them my favourite song and then I got a picture with them. Truth be told, I really wanted to stand beside Clifton because he’s my favourite. He’s gorgeous. Oh man, I feel terrible if they ever read this.. I was standing in the middle between Fraser and Victor and please don’t get me wrong, you guys are gorgeous too. You all are. Anywho, I then got to hug them all and that was the highlight of my life. Seriously. I wish that I had more time to chat with them. What they didn’t know is that I have this rare neurological condition called Moebius Syndrome (which is what my blog is supposed to be about) and it makes me super self conscious when meeting new people. They were so engaging and so nice, they made me feel comfortable but I still didn’t say much. I wish I had the chance to tell them what an incredible inspiration their music has been for me. Their songs are full of encouragement and grace. Especially Hallelujah, Forever Young and my favourite song on their older CD which is I Only Know How To Love. And Amazing Grace off of their new CD. I wish I could have asked them what they thought about me and if I could make it in this life. Mostly, I wish I could have talked to them about writing. My passion is writing, it’s why I started this blog. They’re obviously artists and they write songs. I would love to talk to them about writing and art in general. I know they would have some great suggestions for me, how to pursue my dreams of writing.
Anyway, in case I haven’t stated clearly enough.. the concert was incredible. What I would give to be able to see them again. If you can go see one of their concerts, please do. You will be amazed and inspired. And sometimes moved to tears.
So inspired! Music is a powerful thing.
As I sit here eating my Fruit Loops, I thought it would be a great time to blog. I get these weird urges to blog and that seems to be the only time I log onto to blog now. I haven’t written here for like, a month. Lots has happened, I think.
I’m sure that I mentioned it in an earlier post but seeing as I can’t remember, I will state it again. I got my driver’s license! Woo! Freedom is here. Honestly, when you can’t drive and have to rely on people to get you anywhere, it is not fun. I still am not overly confident driving so I do still rely on people to get me places and I know that I really shouldn’t. I know that, as with anything, you have to step outside your comfort zone because that is the only way that you will grow as a person. Anyway, I am working on it.
Also applied for post secondary. Yay! I’m not expecting much to come out of it but at least it’s a start. I’m trying to come up with other scenarios for if I don’t get accepted this year. I’m thinking of working for 6 months or so and then travelling a bit. I really would love to find a job for the summer that is outdoors, actually doing something productive.
Also, my surgery is coming up soon to get my gallbladder out. Finally! This is seriously something that I would not wish upon anyone. If you’ve never had gallbladder pain, I am not kidding, please consider yourself one of the lucky ones. Surgery is next month so while I am not looking forward to the actual surgery, I am exited to not have to deal with this pain. I’ve had people tell me that you can’t eat certain things after you get it out and then other people have told me that you can eat whatever you did before you had it out. Well, I’m conflicted. Someone please clear this up for me. I imagine it different depending upon the person.
Also, I feel that I have been able to talk on the phone easier in the past few weeks. Just got off the phone with my doctors office to reschedule an appointment and it went fine. For any of you who have not read my other blogs, you may think that this statement is totally random. Calling people on the phone is, I’m going to say, a phobia of mine. It’s hard to call people and have an awkward silence of not being understood. For those of you who have never read my blog and don’t know that I have Moebius Syndrome, I’m not going to divulge into it but here’s a link if you want to learn more.. http://www.moebiussyndrome.com
Anywho, that’s about all that’s going on in my life! Cross your fingers for me that I get accepted into the Journalism program and that I find somewhere to live if I do!