MSAD 2013

What is MSAD? Why, it’s Moebius Syndrome Awareness Day of course! It will be the 3rd annual and it is on January 24th, 2013. Well, providing that the world does not in fact end on December 21st, as is predicted. We still feel the need to be prepared for MSAD for some strange reason. Last year a few of my friends passed out Moebius brochures that I made. The aim of that was to be able to raise awareness in people that otherwise probably would never have heard of it. I also did a news story and a story in a local newspaper about Moebius. I feel great that it was able to get to a wide range of people. The more awareness, the better I say.

Still thinking of ideas on what to do for this years MSAD. Well, technically next year I guess.

I am working on something but if anyone has any other ideas please do let me know!

 

Again here are some websites where you can learn more about Moebius. Thanks!

www.moebiussyndrome.com

www.manyfacesofmoebiussyndrome.com

Spreading awareness to create a better, more tolerant world.

 

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Some thoughts for tonight.

Well, I just want to say that I love blogging. Love it. It’s so great just to be able to write and say what’s on my mind and also educate people on a cause that is near and dear to my heart and that is raising awareness of Moebius.

I love my friends. I love that I have gotten a lot closer with three of the best friends anyone could ever have over the past few months. It’s great. I know I mention them in like, every blog and everyone is probably so tired of hearing this. I’m thankful for them, that’s all. I hope they know how much they mean to me and how I couldn’t picture my life without them now. Even though we haven’t known each other for that long I feel like we have been friends forever. I know they’ll be lifelong friends. All of my friends are amazing and I’m so, so lucky to be surrounded by such great people.

I’m also lucky that I have people that I can talk to about anything. I have different people who all see things differently and who give different advice in different ways but they’re all valued opinions and I appreciate everything so much. You can’t always figure things out by yourself.

Whaaat else? Hmm. Not a heck of a lot tonight. Just feeling happy I guess. Glad for my friends. Happy for my friend who just moved into a beautiful new house. It’s ironic because my iTunes is on shuffle and just as I am typing this a song called Thankful started to play. That describes me to a T right now.

Life has it’s challenges. I know this. Having something as rare as Moebius has its challenges. I’m just trying to get through it as best as I can. Right now it’s going well. Yes, I’m still waiting for this medical stuff to be cleared up but I know that it will eventually and I’m just trying to keep positive about it. Oh and a Nickelback song just started playing. Feeling good tonight.

On that note, I am going to sign off of here for tonight.

Thanks to everyone who is in my life right now. I value all my friends and family more than you know.

People are much too lax about what they post on the internet.

This post may make some people think I’m a paranoid freak. They may be offended. I’m sorry if that’s the case. I’m not a paranoid freak, I think it’s called being smart. Also, if you do it I’m not telling you not to. This blog, as with all my blogs, are my views only. You may not agree but I’m not asking you to. Just read what I have to say and if you agree with it, great. If not, that’s fine too. In the end, everyone is responsible only for their actions and what they do. 

So, I deleted my Instagram account tonight. I was going through the pictures and I though “what is the point of this?” It’s just people posting random pictures. Pictures of everything. For what purpose? Do they like the attention of someone liking or commenting on their pictures? I’m not trying to sound like a condescending jerk here, I’m literally curious. Yes, I had an account. Yes, I posted pictures. No, I do not see the point of it. I would never post a picture of myself on a public forum like that. 

Which brings me to the next part of my blog. I don’t understand why people post pictures of themselves on the internet. You know that people can copy and save pictures right? People can do anything with that information. They can make fake profiles of you. Identity theft? Your picture is on the internet forever as soon as you click post. 

Personal story time. If you think I’m being weird or that nothing like that will ever happen to you.. Well, here’s a reality check. In March of 2009 some ass (excuse the language. I could call them much, much worse) took pictures from my personal Facebook account and make a fake profile on another social media site. I’m not going into detail about what the profile said or anything. I’ll just say this: They were not very nice things, Not only were they not very nice, they were defamatory. The page got deleted after some of my friends reported it many times. It totally, 360 degree changed me and how I operate on the internet. My Facebook privacy settings are very strict. I had two lists of people who I trust who can see most of what I post. Pictures, most statuses, everything is restricted. Not my entire friends list can see what I post. I never post pictures of myself on other sites, ever. I ask people not to post pictures of me as well. I mean, you can call it whatever you want. You can call it paranoid. I really do not care. I call it being smart about who you distribute this information to. And until something like what happened to me happens to you, you won’t understand the hell that you go through after something like that. 

Just at least think about what I have said before you post things on the internet next time. Think about the consequences because once you post something, you can delete it but it will probably never be completely gone. 

A Favourite Quote.

Susana did a presentation at the 2010 Moebius Syndrome Conference about her life with Moebius. On one of her slides, there was this quote about those of us with Moebius.

“We are example of daily struggle. We are seekers of light”.

Love that. Which leads me to another favourite quote. This one from Professor Dumbledore of Harry Potter.

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

Alway find the light.

Living with Moebius and everything that goes along with it.

So, today one of my friends asked me ‘How did you get through having to have so many surgeries?” Well, that made me think. This blog might really be terrible as it is my second blog of the day and everyone might be sick of hearing my thoughts now. Too bad, people. You give me a platform and I can go on and on. But I would love for you to finish reading this, however long it may turn out to be. This whole blog was supposed to be about having Moebius but as you know, sometimes I go on tirades about other things.

Back to the original question, though. I think I got through them because the first surgeries that I remember were when I was 5 and 6 years old. I had the “smile surgery” at the SickKids hospital in Toronto. I had to go back twice to have both sides done seperately. For anyone who doesn’t know what smile surgery is, it’s when (in short, short terms) they take muscle from your thigh and implant it into your cheek so that you have the ability to smile. Being that I have Moebius, the nerves in my face are paralyzed so obviously, I didn’t have the ability to smile. My smile now still doesn’t look like a “normal” smile but at least it’s a semi- smile. And it’s the only expression that my face has, sooooo.. I appreciate it. No I can’t grimace, furrow my forehead in thought, wrinkle my nose, purse my lips, or show expression when I laugh or cry. Does this make me less of a human? Well maybe to some and maybe I thought that way back in the day (okay.. not so long ago) but now I don’t care what others think. At least I try not to. What people with no adversity in the form of physical differences don’t realize is what it feels like to be stared at. I mean, it’s not a passing glance in every case. Sometimes, walking in a store or in the mall, people noticeably turn their heads and stare while they walk. To be honest, it doesn’t really bother me anymore. It used to, for sure. But now I just say (well I won’t say exactly what I say to myself on here) screw it. Why bother giving them the time? If people are too ignorant to have a filter on what they say or do then I don’t really care. The only people whose thoughts I care about are the people close to me. I want to be a good person for them and to make them proud so why should I care about people who don’t know me? I get through the surgeries because it’s just part of my life. There’s no use in trying to change it because I won’t. I just have to deal with them and get through them. And it gets easier after a while.

I’m getting way off topic here. Back to your scheduled Moebius blog.

So along with not having facial expression at all, I also don’t really blink. You now what that means.. don’t challenge me to a staring contests. My friends know that it’s a futile effort. You won’t win.

I’m going to address the one part of having Moebius that still makes me uncomfortable. I’m not going to go on and on about it because i don’t enjoy speaking about it or bringing it up. My speech. This is a sore spot, so to speak, for me. Yes, I admit that I am hard to understand sometimes. Especially to people that do not know me. When I had to call my doctors office a couple weeks ago to confirm my new surgery date, I sat with my phone in hand for literally an hour trying to get up the courage to call. I tried to get both of my parents to call for me. They wouldn’t release information to them so I had to do it. I did, and it went fine. Good, actually. But this isn’t a new thing for me. I try not to have to call places, or people that I don’t know. I turn to email, where I know that my words will be understood. Talking to new people is absolutely my weakness. I can’t do it. I don’t know what it is. The fear of the awkward silence, I suppose. I think that my Moebius friends will understand. If you’ve never dealt with it, i don’t know if you’ll completely understand the feeling that not being understood brings. It’s terrible. But I mean, I just have to get over this, I know. And I’m trying, really I am. One of the worst things is when people speak slowly and louder and use simple words when talking to me. The look on their face tells me that they think that i have mental disabilities. Having Moebius, this is one of the things that I just know now. I can tell when people think this about me. No one, if you haven’t personally had to experience it, knows what it’s like. It’s humiliating, it’s sad, it lowers your self esteem even though you KNOW that they’re wrong about you. I wish i could be outgoing and talk to everyone but I can’t. That’s me. That’s Moebius. That’s what people have to understand. This is why I want to raise awareness about Moebius Syndrome, so that people do not have these misconceptions about us. I want things to be better for the future generations with Moebius than it was for me.

To be honest. when I was in high school I think i gave up a little. I was intent on the fact that I would never get a job anyway or amount to anything so why bother? Why bother going to class when I’m never going to be able to get hired to work with people. I mean, it may be true that it’ll be harder to get employed but i don’t have this attitude anymore. I fully am planning on going to University and getting my Journalism degree. Oh yes, surprise! That is what I decided on doing. I love writing and expressing my views, as people may very well know by now. And I’d rather do that by print rather than by verbally speaking. I’ve talked to my friends and gotten their opinions and the opinions of others and they all say go with journalism. They comment on my writing and say that it is so good, so I’ll take their word for it and go for my journalism degree. I think that only good can come out of it, so I am going for it. I’m applying for school for the fall.

So, in conclusion. Moebius Syndrome is what i have. Yes, that is true. But I won’t let it define me. I have obstacles to overcome still, I always have. But I am going to overcome them. I am going to go on in life as if I don’t have Moebius. If people are uncomfortable with it, well though cookies. I can’t worry about what other people think of me anymore. At least, not the people who don’t matter. The people who do matter are my friends, my family and my horse.

To all the younger kids with Moebius (this part is for my Moebius family) I would tell them this. Live your life with Moebius just as anyone else would live theirs. Learn from my insecurities and don’t let them get you down in your life. Don’t go through what I did, it’s no fun. Life is just too fragile to waste on thoughts like the ones I had. We really can do anything that we set our minds to and don’t let anyone tell you differently. Moebius may make you look different but what fun is it to look like everyone else? And most importantly, you’re no different on the inside than anyone else and you are just as worthy. Don’t give up and always, always follow your dreams.

To learn more about Moebius Syndrome there are a few different websites. I would love to pass them along so that everyone can be educated on Moebius, in hopes of creating a more tolerant world. For everyone. Don’t judge people on what they look like or how they talk. This doesn’t go for only us with Moebius, it goes for absolutely anyone. Everone is worthy of respect.

These are the Moebius websites that i want to pass along.

http://www.moebiussyndrome.com

http://www.manyfacesofmoebiussyndrome.com

Thank you to everyone who read this monstrous blog. I really do appreciate your time. There’ll probably be more Moebius blogs because I know that I haven’t said everything about Moebius. I have almost 22 years worth of experiences with Moebius!

“Our past does not define our future”.

Things Change. Life in unpredictable.

I was going to blog yesterday about the exhausting day that I had and what happened but I literally fell asleep at about 9 PM. 

So I didn’t end up having the gallbladder removal surgery that I’ve been preparing for for weeks. It had to be postponed. I’ve told the story to so many people so I am going to condense it. I got to the hospital, was admitted, got to day surgery and was changed into a gown and ready to go to the OR. The porter had even come to take me there. The nurse was on the phone with the OR at this point because my blood pressure was high. She told the porter that things were on hold with me so the OR was calling for the next patient and that the anasthesiologist was coming up to talk to me. We waited about half an hour. She finally arrived and told me that the surgery was just too risky with a BP like that. Her suggestion was to see my doctor and perhaps a specialist and get on medication, then rebook the surgery. I absolutely was in shock. No one expects this to happen when they go in to have a surgery and it has never happened to me out of all my surgeries. Now my life is a little on hold until I figure what the next steps are. The thing is, and I knew this before, that life is so unpredictable. I really believe that everything happens for a reason. I’m not sure what the reason is at this point but I’m sure that it will become clear one day. I’m hoping that the pain will stay dormant and at bay until I do end up having the surgery which may well be into the new year. It sucks, but after all these years I have realized that you have to take each day as it comes and not worry about the future, but live for today. I’m trying not to stress about when the surgery will be, what doctors I’m going to have to see, what effects the medication will have on my body, etc etc but just trying to take what each day throws at me. Of course you have to plan for the future but you don’t have to focus on it. Take the negatives, but focus on the positives. 

One of the positives in my life right now is that I’ve become a lot closer with 3 of the best friends that I’ve ever had and that anyone could have. They’re willing to go above and beyond and do whatever they can to help, give advice, or just talk to about everything. We have the best times when we’re together. I laugh more than I ever do. I know that I’ll be friends with them for life, no matter where our lives take us. One of these girls is going through health trouble and could potentially be facing a not very good diagnosis in the weeks to come. She won’t necessarily be getting the bad news, it could be anything but I still am worried. This is why I don’t understand how people complain about the mundane things. Like ugh, I have to work today or I have to get up early or I have to walk the dog or it’s cold outside. I mean, I make these comments in passing sometimes too but it annoys me even when I do it. Don’t complain about those meaningless things. This has been bothering me for the last few months. I have seen my grandparents’ failing health, one of my best friends is going through health trouble not for the first time, I’ve been going through this whole gallbladder thing. So many things happen in life that are so much bigger than these insignificant things. And like I said in my last blog, there are people who would do anything to get out of their hospital bed, or whatever perilous situation that they are and have your life.. Even if it just consists of going to work. My grandparents say “just be thankful that you are healthy enough to get up and go to work” because they can’t. If you complain about these small things, be grateful that that’s all you have to complain about and try not taking life for granted. Alright, I’m getting off of my soapbox now because these words are coming through my fingers in anger. I know what it’s like to have hardships, I’ve seen many hardships over the past months with my family and with my friends. This life is only what you make it and it’s only as good as you make it. There’s no time for complaining because life is too short to be that unhappy. 

I was talking to my friend about this earlier today. I was saying that I hope my blog posts don’t make me look self centred or like I am coming from a place where I think I am better than everyone. I really have no intention of being like that. No intentions of that. I am coming from a place of having realized in the past few months what life really looks like and the hardships that come along with it. I don’t think I have a bad life, not at all. People have it much, much worse than I can even imagine. I want, though, for people to evaluate the things that they complain about and see if they are really important in the grand scheme of things. Next time you go to complain, ask yourself if in 12 hours you will still be griping about it. Ask yourself if the situation is really bad enough to complain about. And finally, if it is, do something to change it. Like I said, life is way too short and too fragile to live unhappily. Of course, there are situations where this does not apply. There are situations that are way too complicated. I’m talking about the small things like having to get up early for work. Everyone does it. My sister, for example, sometimes works 14 hour shifts. I don’t hear her complain. She just does it because it’s her job. Complaining about the long line at the grocery store? Is it really the worst thing ever? When you are out of the store and onto your next task, will that line really matter?

Alright. I’m done. I just want people to be aware of these things. Don’t be unhappy. Life is fragile and short and we all have to live the best lives with the things that we are dealt. I’ve seen multitudes of hardships but I am trying to make the best of it. No, things are never easy but we all just need to learn to put things in perspective. 

No matter what life throws at you, always remember that you can look at it in a positive or negative light. Positive is always better. 

Today (technically) is the day.

So the day is finally here. The day that I say adios to my gallbladder. The thing that has been causing me the worst pain ever for a few years now. The day is here. It’s 1:30 AM (I’m noticing a trend.. all of my blogging is done at this time in the morning. Huh. Inspiring) and I have to be at the hospital by 8AM so that I means I have to be up in about 5 hours. After being up at 430 this morning to make my flight that had been cancelled the previous night. It’s been a long freaking day. And even longer ones to come, I know.

So, lots of people today have asked me if I’m nervous. Well to a point yes, I am. I hate getting put to sleep. I hate that feeling of falling and voices fading all around you. It’s like you’re falling into some abyss and you can hear people talking but they seem to get farther and farther away. And then suddenly you’re waking up. You feel extremely groggy and very disoriented. I hate the waking up and coming out of anasthesia. It’s a horrible feeling. I was thinking about all the surgeries that I have had throughout my 21 years and the number is about 14 or 15. They’re all repairing what has been affected by Moebius. I had a club foot repaired when I was a baby, I had the smile surgery when I was like 5 and 6 (they did it in two parts, and I had to go to Toronto to the SickKids hospital each time. Now I can somewhat smile.. something that most people take for granted. That and being able to show expression), I’ve had multiple eye surgeries. My eyes used to not move literally at all. This is due to the Moebius. I’ve had dental surgeries. I have a condition that causes the enamel to be unusually soft. They attribute this to Moebius. In all, I’ve had about 14 surgeries. I’m not complaining, really. Just stating a fact. There’s no use complaining about the things that you cannot change, it’s a futile, uphill battle. Accept things the way they come and just live life the best way that you can to enjoy every moment. As bad as this life can be sometimes, there is always light. There is always a way to find the light. I want to live this life because there are lots of people who are not as fortunate as we are. Think of that when you’re complaining about having to go to work, or about the traffic or about something stupid that someone did. There are so many people laying in hospital beds, wishing and willing to give anything to have your life. Think about this the next time you are about the honk your horn at the person in front of you that you perceive as driving too slow. We all need to just slow down the pace of life and enjoy it for all that it is worth. There’s so much beauty in this world. We just have to find it.

Anyway, I’d better get to sleep. I don’t know if I will though. I am dreading the next 12 or so hours. I hate anasthesia.

I hope everyone has a great day and remember, even in the darkest times, there is always light.

–Kelsey

PS. I have the best friends ever. They bought so much awesome food for us today and we had the best little get together. We talked, ate and just had lots of fun. It was just what I needed. I love you ladies! I owe you coffee!!

Lots of thoughts. It’ll probably turn into a rant.

I have to preface this by informing you all that I am in a lot of pain right now. Gallbladder pain is the worst pain imaginable. Trust me.

First thought is that I really don’t agree with the proposed pipeline that they are planning to build across Alberta and B.C to the west coast. Yes, it would be good for the economy. That’s all it would be good for. Not good for the land, the environment, the animals or the people who live in it’s path. What if it bursts and send oil into these sensitive ecosystems? The animals that would be displaced or killed would be devastating. Innocent, helpless animals covered in oil. It would be a heart breaking scenario. The pursuit of the almighty dollar sure can have devastating effects. I don’t agree with the pipeline proposal at all. And i come from an Albertan family. My dad worked in the oil industry. I’m not going to sit back and just agree with this because my family has different views. They support the pipeline, as most other people do because of the economic benefit. I hate to tell people that an oil spill would be damaging to the economy too. Money is not everything and I’m sick of people putting dollar signs on everything and focusing on the economics of things and not preserving the earth and all the inhabitants instead of doing only things that benefit humans. That’s the end of my rant on that.

People who make fun of disabilities and think it’s OK. I am sickened by it. Absolutely sickened. People who call other people retards. Seriously, get educated. Get a dictionary also. Maybe you don’t understand if you’ve never had a disability. Actually, if you’ve never had a disability you can’t possibly truly understand what it’s like. To get stared at, commented on, made to feel awkward.. It’s part of my life with a disability. I’ve kind of gotten used to it to be quite honest but does it get easier? Never. People liberally post pictures of themselves on Instagram and Twitter. Well not only do I think it’s stupid (identity theft? Stalkers? People who will steal your picture to use in another form without you knowing? And I’ve been called paranoid about this but I like to think of it as being internet smart) but I AM scared that someone will use my picture as something to make fun of. They’ll make a meme with some derogatory comment about disabilities. My friend (with Moebius) showed me a meme that some idiot made with a picture of a girl clearly with Moebius with a very demeaning and sick comment. We don’t know who the girl in the picture is so we can’t even let her know so she could try and trace who did it. We did report it though. In 2008 someone on my friends list on Facebook took 4 or 5 of my pictures and made a derogatory page pretending to be me on another social networking site. It messed me up. Only certain close friends can see my pictures now on Facebook, I don’t post my picture anywhere else on the internet, I’m paranoid about people in public settings taking my picture, etc etc. I’ve never really told anyone about this but people need to know the effect that bullying and this kind of thing has on people. People with disabilities are much more likely to be made fun of and some people don’t seem to get tihis. I just want to raise awareness of Moebius so that people will be educated and so they will know that people with Moebius are no less intelligent than them, and some Moebians are even more intelligent than the average person. The point of this rant? Don’t say stupid things about people who can not help looking or speaking the way they do. Grow up.

Last rant is that I hate gallbladder pain. It is the absolute worst pain ever. I have gallbladder removal surgery on Wednesday of next week. This will be probably my 16th or 17th surgery so I’m used to it but still get nervous every time.

That’s all for now. Thanks for reading!

Please be nice to everyone you come in contact with!

 

–Kelsey

I just feel like blogging.

Well, it’s 3:30 as I type this. I should be sleeping but alas, I am not. My gallbladder just felt the need to get angry at me. Not sure why.. All I hate was a bowl of Honey Nut Cheerios. So thanks for that, gallbladder. What you don’t know is that you are getting removed from my body next week so, congratulations on this parting gift. 

Still trying to iron out what I’m going to do for post secondary. I know I said I was planning on doing the disability studies thing but I don’t know where that will get me. The thing is, I’m not really sure where I want to go exactly. Will I ever figure it out? I really feel like the answer to that is no. I just feel like there are millions of career paths out there. How do I choose just one career for the rest of my life? I’m really still considering the disability studies diploma and then the degree. But then, I am still considering the Journalism route as well. My plan for that if I did my Journalism degree would be then to get my Masters because you can just go that much farther if you have a Masters. I know it’ll be hard work, as my sister just finished her Masters course and I saw what she had to go through. It was a ton of work. A ton of sleepless nights. I wish I would just get a sign as to what I should do. Help me, someone! I just can not decide. 

I was just reflecting on this today. It’s kind of a random thing, but I mean, you all know that I write random blog posts! Just whatever is on my mind at the time. Anyway, it’s really amazing that sometimes the most inspirational, amazing people come into your life when you least expect it. My mom and I went on a cruise to Alaska in August of this year. I have wanted to see Alaska for years. We finally decided upon the Alaska cruise. It was an amazing trip. The naturalist on board.. How do I describe him? I can’t really put it into words. Just to most amazing, inspirational, moving person that I have ever seen speak. The passion in his words, his knowledge, his genuine love of Alaska, the animals and the people was incredible. I am so lucky to have had the utmost privilege of meeting him and still being in contact with him over email and Facebook. We all need someone like that in our lives. Kind of like a mentor. I hope to be that knowledgeable one day and I hope that I can kind of be a mentor figure in someone’s life. It’s how we leave legacies on this Earth. I want to leave a legacy. I want to profoundly change at least one person’s life. I want to leave the Earth a little better than I found it. Sorry, that sounds so lame but that is my goal in life. I want to care for animals, I want to help endangered species, I want to help veterans who fight for our country, I want to inspire people. First and foremost, I want to spread awareness of Moebius Syndrome so that when I leave this Earth, I know that it is a more tolerant place for the future generations of people with Moebius and so they will not have to struggle like I have struggled. 

Well, I think that’s enough of me being preachy tonight/this morning. I am flying out to see my grandparents and my mom today so I guess I better post this and get off my computer. If I can’t sleep, I should probably finish packing. 

Let’s all do something today that will make the world a little better. 

❤ Kelsey