The things that change you.

Today I am debating whether to post a link to the news articles that I have been interviewed for. I feel that it would add something to my blog, a realness and personality. Not only that but it would be a good way to educate more on what Moebius is and really how it affects us that have it. You could see what I mean about facial paralysis and see what that looks like. In those ways it would be a good addition. 

But then, I have this anxiety about posting information about myself on the internet and more specifically, pictures. I’m sure I talked about it in an earlier blog about how someone on my Facebook friends list in 2009 took pictures from my personal page and used them to make a defaming page about me on another social media site. That completely changed my life and how I use the internet. My Facebook is now very private and only a close few people that I trust have access to my pictures. I have been called paranoid because I asked a friend to take a picture that she took of me off of Twitter or Instagram. I don’t like having my picture taken by friends and having it posted on the internet because what happened in 2009 really scarred me. And maybe I am paranoid but I can’t shake that feeling of what if it happens again and what if this time someone posts personal information about me or something like that. For a long time I was so paranoid about people on cell phones when I was out. I always thought they were taking my picture to use in a bad way. Group of friends laughing? I assumed it was about me. So you see, these things that happen in our lives, no matter how small they may seem to others can really affect lives. The ’09 incident affected mine and still does today, obviously. 

So, advice would be great. What should I do? I feel like in my quest to raise awareness of Moebius Syndrome, these videos would be very educational. But I have personal reservations about posting them and I just do not know what I should do. 

There’s always light after darkness.

So this post is kind of unrelated to Moebius Syndrome. However, this blog is supposed to be about what’s going on in my life also so I just wanted to post how I’m feeling tonight. 

I’m talking to one of my best friends right now. She’s been through a lot. She’s been through more than most people, and some really tough stuff. I won’t go into detail because it’s not my place but she’s definitely been through a lot. She is so happy right now with some great news. I’m so happy for her! Everything good that’s happening right now dude, you totally deserve it. After the darkness that you’ve been through there’s a light now. I could not be happier. You are one of my best friends ever and just know that. I want you to know that everything good that happens now, you totally deserve it! I know you said that it was hard to get used to things being so good after they were so bad but you don’t deserve the shit that you went through .. you deserve to be happy! 

My friends are so important to me. I honestly do not know where I’d be without them. They’ve helped me through so much recently and they are always there for me. I’m so grateful for them. 

I know I’ve talked about this in other blog posts but I just can’t shake the feeling. So my friend and I were out tonight and there was a super hot waiter guy.. All the hot guys work at restaurants I guess. Anyway, he’s tall and totally gorgeous. Turns out that we actually knew him in high school which is kind of weird but whatever, he’s hot. I can’t shake the feeling of not being adequate. Because of having Moebius and looking and sounding different I know that no guy would ever be interested in me when he could have his pick of any girl. Like, I don’t even talk to guys. Sad but true. Just trying to be honest here. I know that people say oh, it’s whats inside that counts, you’ll eventually find someone, etc but the truth is that there are serious differences with me. Besides, most of the good guys are taken. I’m so angry. Why do I have this difference? Not only that.. why do I let it hold me back? I’ve said before that I don’t let it hold me back from most things and that’s I think partly true. When it comes to guy front, I just want to be able to talk to guys and somehow, someday find someone to be with. Will this ever happen though? I just don’t know. I just really do not know. 

That’s about all that’s happening right now. Getting ready to go to school in the fall and really wanting to go on a vacation somewhere before that.

Oh, we might be making a video on Moebius Syndrome sometime soon. Let me know if there is anything you’d like to know and I will try and get it in the video! As always, let me know what you think of my blog! 

Another late night blog entry.

It seems like I blog 78% of the time at night. It’s currently 12:55 AM. Maybe my best thoughts come to me at night or maybe I’m just so tired that I THINK what I am saying sounds good and comprehensible. Either way, I felt like blogging. 

So today (technically yesterday) was St. Patricks Day. Overall a very eventless day. Then I went drinking (okay, 1 drink) with one of my best friends. It’s always a good time when we get together. I swear, I laugh more with her than with almost anyone else. I love my friends. And I’m not drunk, I promise. I did chug the last half of my drink though. I think that I sound semi- intelligent and not drunk-ish in this post. I was feeling super good when I got home, I even cleaned my room a bit. Now though, I’m feeling.. well, I don’t really know what I’m feeling. Kind of depressed. Maybe it’s the alcohol, seeing as it is a depressant. Well, I think depressed is too strong of a word. Just a little glum (thanks thesaurus) and blah. I can’t really put my finger on what it is or why I feel this way. I just got super unmotivated to finish this blog. 

Let’s explore why I may be feeling this way. Well in the morning I have to call the head office of my work to ask why I didn’t receive a T4 for my taxes. I’ve blogged about this many times. Calling people on the phone is extremely hard for me. Having Moebius, my speech is sometimes hard to understand and when I call people I dread that awkward silence which, I’ve come to learn, means that they’re trying to process what you have said. I don’t know if other people with Moebius have this issue but it’s a huge one for me. I will literally stare at the phone for half an hour, stalling. Is this weird? Seriously, is it? How do I overcome it? I can’t have people make my phone calls forever. I know that I just need to do it but I can’t. And this is going to sound really stupid but I’ve been dreading having to do it all weekend. Literally all weekend. I’m just going to have to make the call though and hopefully it goes smoothly. 

Another reason may be the whole relationship thing again. People keep telling me that I will find someone who loves me for me, who won’t care about the outer differences (the Moebius), etc. I don’t know why but I just don’t see it happening, ever. We were talking about my friends’ boyfriend when we went for drinks and I must admit, I want that. I want someone to share my life with, someone who is there, someone to cuddle with. I actually cannot believe that I used the word cuddle. Oh my. Anyway, whatever. I do want that. I just fear that it won’t happen for me. 

Then I just got to thinking.. If I could change one thing about myself and take away the Moebius and everything that goes along with it, would I? That’s a very difficult question. it would definitely make life easier. Definitely, there’s no question that it would. But then I think, this is who I am, who I was meant to be. It has shaped me into the person that I am and weirdly enough I think I would be lost without it. If I was “normal” I think I would be lost in a way. And I like the person that I am because of having Moebius. I really do. I don’t mean to sound pompous or arrogant or boastful but I really feel like it has made me a better person. I’ve been through things that no one else has (other than my Moebius friends probably), it’s definitely given me a thicker skin and it has definitely, no doubt in my mind made me a more tolerant person. I don’t judge people, I don’t complain about the little insignificant things in life because I know that there are bigger things. In particular, I’ve seen this commercial about a woman who won’t go out because she has a cold sore. Really? Really?? How freaking pathetic can you be. And how vain. Get over it. There’s people with scars, burns, disfigurements and you’re concered with a cold sore. Sorry for this rant. It makes me angry because I wish that all I had to worry about was a cold sore. Sorry lady but I think people notice facial paralysis more than they do a cold sore. Do people gawk and double take at you because you have that cold sore? I think not. Do people notice it? Probably not. Don’t flatter yourself. Okay. I’m done with that rant. I’m angry now. Moving on. 

People may not understand where I am coming from with that previous rant. If you haven’t ever had a disability, something that makes you so different from others, you can’t possibly understand what it is like. Everything that I do is more difficult than it is for others. Something as simple as talking to people. People really take for granted being able to speak to people and being understood the first time that they say something. And not only that but not being judged. People assume that I have a mental incapacity because of the way that I look on the outside. I know what it is like to be judged so I never stare at people or comment on someone who is a little different. Who we are is shaped by who we’ve been. Having Moebius has shaped me in multiple ways and I do feel that I have experienced things that others don’t. Does that make me better than others? Absolutely not, that’s not what I’m getting at. I’m just saying that I know what it is to struggle. I know a lot of people do but I’ve struggled in different ways than most. So back to the original question.. Would I take away the Moebius if I could? It’s a very, very hard question. It really is. I struggle with the answer. I know that it sounds crazy but I feel like I am Moebius.. it’s who I am. It doesn’t define me but it makes me who I am. So I’m going to say no, I wouldn’t. It makes life that much harder but “without struggle, there is no progress”. True enough.

Also I’m thinking about doing a short video on Moebius for Youtube and such. I don’t want to be just talking and being boring. What’s something creative that I can do to raise awareness of what Moebius is? Or should I just speak about it? Ooooh maybe a slideshow presentation kind of thing? Whatever ideas you may have PLEASE send them my way!! I would love to hear them. Thanks! 

Alrighty, that’s all my ranting for tonight. As always please comment and let me know what you think of this or any of my posts, or if you have any questions! 

The Power of Music (Longest blog ever)

Music is a powerful thing. It can move you, see you through darkness and touch your soul. It communicates better than anything and can spread messages to all corners of the Earth. Music knows no boundaries. It can change lives and inspire generations. This blog post is going to be about posting lyrics that have touched my life and the lives of my friends. And as always, if you have any to add please do feel free to comment!

Having Moebius, I, like others sometimes felt isolated from others. We sometimes felt that we couldn’t express in words what we were feeling. Well, for me, music has always been an outlet. It has helped me through the darkest times with messages of perseverance, strength and most of all, hope. It helped me realize that things will always get better and that there is always light at the end of every tunnel. Here are some lyrics from songs that helped see me through some dark times in life. There are some older songs and songs from today that I can’t stop listening to.

You Are Not Alone by Michael Jackson. This song was on the 1996 Grammy Nominees CD that we had. I remember listening to this song day in and day out. I was like 6 or 7 years old so it meant something different to me than it was maybe supposed to. To me it meant that I was never alone and that there was always someone there, no matter who it was. My favourite lyrics are from the chorus of the song.

“But you are not alone
I am here with you
Though we’re far apart
You’re always in my heart
But you are not alone”

High school was definitely the hardest in terms of school years. Bullying wasn’t a factor really for me, which I am grateful for. There was some laughing and stuff that I endured but I know that others have it a lot worse sometimes. What’s just as bad as bullying though, is isolation. I really didn’t have many friends until grade 12. I am so incredibly embarrassed to type what I am about to but when I created this blog, I vowed to be transparent and honest in an effort to raise awareness of what people with Moebius and other disabilities sometimes have to go through in hopes that it will help others. Anyway, in grades 10 and 11 I regularly ate lunch in the bathroom, in the biggest stall. I basically hung out in the bathroom because you can only wander the halls so much. That 40 minute lunch period felt like an eternity. To kill time, I’d go talk to my teachers. How lame is that? Most days though I would be in the library doing homework or pretending that I was doing homework. Sometimes though, the library was closed for some kind of meeting and sometimes all the computers were in use. There was rows of computers so I never understood how they could all be in use but alas sometimes they were. There were a lot of times when I just didn’t go to class. I’d sleep in in the morning and somehow justify how it was okay to miss my morning classes. And then I’d just say screw it to the rest of the day because I already missed 2 classes.. what’s one more? Looking back now I wish that I had applied myself more in high school. I think a lot of people have that regret but getting into university is very hard when you don’t have to marks or classes that you know that you could have. It’s hard to move forward in life without them.

Anyway, back to songs. These are some songs that got me through high school.

Run to Me by Paul Brandt. When listening to this song I fantasized about having someone to run to but it also gave me hope that one day there would be someone.

“When it’s midnight on a winding road
And you don’t know where you are or where to go
Through the rain, call my name,
And I will run to you. ”  These are my favourite lyrics in that song.

Bring It All Back- S Club 7

This song is so 90s but in 2007 I went to summer camp. In the morning before breakfast we always had to do a dance to this song. I continued to listen to it throughout high school. It’s just a feel good song. “You are your own destiny”.

“Don’t you know it’s true what they say
Things are sent to try you
But your time’s coming around
So don’t you stop tryin’

Don’t stop, never give up
Hold your head high and reach the top
Let the world see what you have got
Bring it all back to you
Dream of falling in love
Anything you’ve been thinking of
When the world seems to get too tough
Bring it all back to you

Na na na na..

Don’t you know it’s true what they say
Things happen for a reason
But your time’s coming around
So don’t you stop tryin'”

I could literally list dozens and dozens of songs here because music was my outlet, and still is. I love music and definitely love all kinds.

Today things are obviously very different than they were in high school. My best friends today are actually the girls that I met in my grade 12 English class. I’m so lucky to have them in my life. I am a big believer of things happening for a reason. Well on my timetable on the first day of grade 12 I had a different teacher and classroom then I ended up having. I went to that classroom, sat down and thought it was weird because I didn’t recognize anyone. It wasn’t until my grade 11 social teacher walked it that I discovered that I was in the wrong class. With a “I already took this class!” I dashed out of that room and began the mission to find out where my english class was. Well I found it with the help of one of my other teachers. That English class was awkward at first, my first group was lame and never spoke to me but then I was put in a group with my future best friends and it quickly became my favourite class. I’ll never forget, on the last day of English we were laughing so hard at something and our teacher turned to us and said “you guys are really starting to piss me off”. Highlight of English, I swear. That class changed my life. I finally had friends to hang out with at lunch, after school, had people to talk to in the hall, etc. Anyway, like I said today things are different. I have friends, dreams and goals for the future. I’m going to college in the fall and living in residence. I’m doing things that I never thought I would do. Things are finally falling into place. The songs that get me through the days now are some of the following. Again, I can’t post them all. Just my favourites.

Forever Young and Amazing Grace by The Tenors. These songs are beautiful and the Tenors are the most talented 4 guys I have ever heard, ever. I had the pleasure and honour of seeing them in concert last month and I also got to meet them which was beyond amazing. They deserve every bit of success that they are having because they are incredible.

Forever Young, I could not choose my favourite verse so I’m posting the whole song. Feel special, Tenors because I am not doing this with any other song!

“May God bless and keep you always
May your wishes all come true
May you always do for others
Let others do for you
May you build a ladder to the sky
Climb on every rung
May you stay..
Forever young

May you grow up to be righteous
May you grow up to be true
May you always know the truth and see the light surrounding you
May you always be courageous
Stand upright and be strong
May you stay..
Forever young

Forever young
Forever young
May you stay Forever..

May your hands always be busy
May your feet always be swift
May you have a strong foundation when the winds of changes shift
May you heart always be joyful, may your song always be sung
And may you stay forever young

Forever young
Forever young
May you stay Forever Young

And may you stay
May God bless and keep you always
May your wishes all come true
May you stay
Forever young”

Amazing Grace

“When we’ve been here ten thousand years…
bright shining as the sun.
We’ve no less days to sing God’s praise…
then when we’ve first begun.

“Amazing Grace, how sweet the sound,
That saved a wretch like me….
I once was lost but now am found,
Was blind, but now, I see.

and Grace will lead us home.”

Taking a big jump in genres now but I have to list a Nickelback song. They’ve been my go to band for years. Still love them. My favourite Nickelback song that has blog-appropriate lyrics is Lullaby. Beautiful song.

“Please let me take you
Out of the darkness and into the light
‘Cause I have faith in you
That you’re gonna make it through another night
Stop thinking about the easy way out
There’s no need to go and blow the candle out
Because you’re not done
You’re far too young
And the best is yet to come

So just give it one more try to a lullaby
And turn this up on the radio
If you can hear me now
I’m reaching out
To let you know that you’re not alone
And if you can’t tell, I’m scared as hell
‘Cause I can’t get you on the telephone
So just close your eyes
Oh, honey here comes a lullaby
Your very own lullaby”

Another song, it’s an older one, that I love and is so inspirational is When The Sand Runs Out by Rascal Flatts. It’s about changing your life and really living every day to the fullest.

“‘m gonna stop lookin’ back and start movin’ on
And learn how to face my fears
Love with all of my heart, make my mark
I wanna leave something here

Go out on a ledge, with out any net
That’s what I’m gonna be about
Yeah I wanna be runnin’
When the sand runs out

‘Cause people do it everyday
Promise themselves they’re gonna change
I’ve been there, but I’m changin’ from the inside out”

Another Rascal Flatts song that I love (okay, I love them all) is called Here’s To You. It’s a song dedicated to their fans.. I think. It always made me feel a connection with them and like I, along with all their fans, was special to them. It really is such a connecting song.

“They got three in the front and four in the back of a civic
Camped out all night on the sidewalk just to get tickets
With their hands on the fence in the back by the buses and the limousines
Just to get a glance at a drummer or singer yeah anything
And they come from miles around
For that moment when the lights go out
And they scream

It’s the girls in the front row singin’
It’s the boys with the wheels that bring them
Its lighters in the air and you guys up there
You’re the heart and soul and the reason we do what we do
Here’s to you”

A lot of friends sent me some songs that inspired them but I think that this blog post is too long already. Sorry guys, I promise to incorporate your song choices in a future blog post!

Thanks so much for reading this massive post if you made it to the end! Again, I reiterate, music is the strongest form of communication and has the power to change lives and lead you through darkness.

The Future..

Let me start this blog post off with a quote.

“The future belongs to those who believe in the beauty of their dreams”. Love this quote and I stole it off of a piece of art that my sister has hanging above her desk. I wish I could say that I was intellectual and philosophical and came up with it myself but alas, I did not.

So as most of you probably know by my previous blog post, I got accepted to college for the fall of this year. Come September, I will again be a student. So I now want to divulge into why I am only a tad excited and not like, full scale excited.

I know that everyone goes through this. All students going off to school for the first time experience it in some way. I think it’s worse for me having Moebius. I don’t usually say that having Moebius makes me problems worse than others because usually it doesn’t. I think the apprehension is worse though. Like, what are people going to think of me? How are group projects going to go? Will I be accepted? I really do not want to have roommates because I don’t want to be that weird person who they talk about all the time and who they are mad that they got stuck with. I know that the college experience is all about meeting new friends and such but I’ve never been good at that.

a24410e3d32a81bcc4023a7dca36cac1

But then I look at this (it’s from Pinterest. If you saw my boards, you’d think I was a philosopher) and know that it’s true. I try to remember this saying at all times because it is so true. We never will grow if we do not step outside of our comfort zone. Things may be hard at first but they always work out in the end. That I am sure of.

The future has just gotten a lot more real. Surgery is over, I have to go back to work and school starts in the fall. I am starting a new chapter in my life and as scary s it may be, change needs to happen.

2513c673452446b57ed99a9150d4fb62

This is one of my favourite quotes.

Not 100% sure of the point of this post..

Day 3 post surgery. This is not going to be the most intellectual blog post ever written. I’ve already written and deleted like 5 sentences. I’ve lost the past two days, as I’ve been hopped up on painkillers. Strong ones. I still feel a bit out of sorts. 

Anyway, sitting here watching Full House and trying to tighten my grasp on reality after being knocked out for the past two days. Also, I have no idea how this thought popped into my mind but I remembered that the Iditarod dog sled race had started so I’m sitting here tracking that. I really can’t even put a coherent sentence together right now. Well, I guess I can but not one that is of any entertainment value. I’ll probably look back on this blog post in a few weeks and wondering what I was thinking when I posted it but the truth is, my brain is a bit fuzzy still. I’m sure that there are things that I wanted to talk about in this blog when I started to write it but I just don’t know anymore. Hoping that within the next few days I will be totally back to feeling normal and off these pain meds. The pain in my stomach from the incisions is going away slowly so hopefully it will be completely gone soon. I don’t know where this fits in to this blog post but I got an email this morning from the Nickelback fan club that they’re launching a “The Hits” tour in Europe. Okay so, A) they just wrapped up a tour in Europe, B) They don’t have a new CD out or anything C) Why aren’t they coming to Canada? I want to see them again. Even as an avid Nickelback fan I admit that a “the hits” tour is a little weak but I’d take it if they were to come here. Of course, I’d need some backstage passes. Everyone knows that meeting Chad Kroeger is on my bucket list. I even made it official and put it on my profile info on Twitter. 

Anyway, I’m going to wrap up this blog post because I’m starting to not make sense, even in my own head. Sooooo, look forward to more intelligent blog posts starting in the near future. 

Post-Surgery update.

While it hurts to lean over my laptop and type this, I thought I would write an update from surgery yesterday. My stomach, where the 4 incisions are is all taped and gauzed up. It hurts to move at all. Definitely didn’t think it would hurt this bad. It’s like the incisions are ripping when I move. I know they’re not but that is what it feels like. There’s a lot of blood too under the tape.. It’s really kind of gross to look at. The surgery itself went fine though and recovery at the hospital was fine. I think it’s partly because I was hopped up on Morphine. Now it has worn off obviously and hurts a ton more. However, they did give me some other painkillers to take home. I’ll have to take some later. When I did wake up in the recovery room yesterday, I thought I still had a breathing tube in because my throat felt so scratchy. Turns out that I didn’t, just had the oxygen thing in my nose. I was in the recovery room for like an hour and then back on the unit for another few hours then was released and got to come home. i basically laid in bed and watched movies for the rest of the day and night. It still hurts to move so I am sitting on my bed, watching Little Fockers, tweeting (follow me @CanadianDuck007) and blogging. I am hoping the pain from my stomach wounds will subside in the next day or so and then I get to start looking forward to the fact that I will never have another gallbladder attack again. That’s a pain that I will never forget. It’s awful. What I am worried about now is what I will and won’t be able to eat with a lack of a gallbladder. Will I be able to eat normally? Will my stomach be upset all the time? I’ve been eating a ton since yesterday (obviously low/no fat stuff like crackers and soup) but I am feeling fine. I was so hungry yesterday after getting home, I had to eat something so I stuffed my face with Wheat Thins. They’re my favourite crackers. Since then I’ve eaten soup, more crackers, Sugar Crisp, pudding and I’ve felt fine. Other than the pain from the incisions. Anyone who has had their gallbladder out, comment and let me know your experiences, what you eat now, etc. I’m just glad that surgery is over. 

Now that surgery is over, there are some things that I would like to focus on. Health is obviously one of them because I think I may have to change some eating habits now that I don’t have a gallbladder. Another thing that I want to really throw myself into is raising awareness of Moebius. I’ve been doing a bit of it through my blog and such but I feel like there’s even bigger and better ways to raise awareness. I’ve had a few people now tell me that I should write a book about my experiences, about Moebius and such so I am going to spend a bit of time looking into that. I don’t know about publishing or anything like that. If anyone has any suggestions on that front please let me know. I know that at some point I need to go back to work, so I will do so when I am feeling better. I also to want to plan a fundraiser for the Moebius Syndrome Conference next summer. I want to raise enough money to be able to send people that want to go but just can’t financially make it. It would also be a great opportunity to raise awareness. I’m looking for a new job too, something closer to the field that I actually want to be in which is journalism. The one other thing that I want to do is get the tattoos that I’ve been planning for the last year or so. On my left forearm I want to get the words Believe You Can. With Moebius, I’ve often felt held back so I would love to have these words to prove to me that I can do anything. On my right lower bicep, just above the bend in my elbow on the inside I want this quote from Hamlet “This above all, to thine own self be true”. I also want a small maple leaf somewhere as an ode to Canada and being a proud Canadian. 

Anyway, life has changed a bit in the past 2 days so I am just trying to adjust post- surgery. There’s definitely things now that I need/want to focus on so I hope that I can get lots done in the next few months. 

 

Surgery Day

Probably shouldn’t be doing this but I had to. Sitting in pre-op waiting to be taken for surgery. Freaking out.. I know what’s coming and I know the feeling of being put to sleep and waking up an it’s not fun. I’m losing my mind so I had to blog. Saying all of this kind of helps. Anyway I’ll probably get in trouble for being on my phone, seeing as there is a big sign that says all phones must be turned off.
Hope everyone has a great day. I hope all will go well.
I don usually ask for this but any thoughts, prayers, anything you want to send my way will help immensely!

Remember

Happiness can be found, even in the darkest of times, if one only remembers to turn on the light.

–Albus Dumbledore