So if you’re out there barely hanging on;

Yes, the title of this blog post is a Nickelback reference. I was just listening to Lullaby so maybe that’s why I’m so sappy currently. Also, I just really love Nickelback 💕

Hi, everyone!

Wow, it’s been so long since I last blogged. I can’t believe it. I’ve been super busy with work and school and just haven’t had a spare moment to sit down and write a blog post.

I’m one course away from my communications degree! It’s been a long road, almost 5 years of post secondary, but in that time, I have gotten my journalism diploma (with honours) and have almost reached my goal of my communications degree.

I’m writing this blog post not only for myself but also for anyone else who is struggling with the same things that I am.

The idea for this post came from when I was swiping my way through Tinder. I’m somewhat ashamed to admit that I actually use Tinder but hey, it’s 2018.

So anywho, I swiped right on very few men. Maybe like 5 or 6 and I think only 1 was a match. And they must have unmatched me right away because the little red notification dot at the top right disappeared a few moments after matching.

I don’t know why I use Tinder, to be honest. It’s a bit degrading and I just don’t thing it’s a highly reputable place to meet men. But I digress.

For those of you who have never read my blog before, I have a rare neurological condition called Moebius Syndrome. It causes me to have facial paralysis, along with a speech impediment.

Dating apps are generally not kind to who of us who look different. These apps are so superficial and generally based on how good looking you are. They’re pretty demoralizing because people are so shallow. I guess I’m bitter.. does my bitterness show through? Haha.

Anyway, swiping through Tinder and I just thought, as I do many times a week, will I ever find someone who can look past the Moebius? Someone who won’t judge solely based on appearance? Time and my life experiences have told me no, but I keep opening these apps hoping to be proven wrong. I mean, being single is good because I can do whatever I want whenever I want and have no one to answer to but I guess having a partner would be nice. Someone to travel and see the world with. Someone to watch sunsets with. Someone to just be with, someone to love. Someone to do little things with, like go to movies or for dinner. My friends are the best ever, but there comes a time in life where you find yourself wanting more. I feel like most men judge women based on appearance alone and it grinds my gears. Is there someone out there who will love/want me for me, who I am and what I stand for? I have big dreams and ambitions and I want someone who will help me chase them.

Another disappointment as of late has been job hunting. I’ve had 5-6 interviews and they haven’t ended that well. Interviews are a means to an end, and that end is obviously getting a job but that hasn’t happened for me yet.

I guarantee that employers are at least somewhat put off by how I look or sound. I can’t delude myself into thinking that they don’t notice my lack of facial expression, my drifting eye or my speech. I know they do. I want them to see more, though. I want them to see my passion, my ambitions and my goals. I want them to see what I, as a person, could bring to a communications team. It makes me emotional writing this because I am so angry that prejudice is still such a huge issue in our society. Okay, yes, I look a little different and sound slightly different. Yes, and I also got myself through college and university. I can write, and I know that because people tell me on the daily. They tell me that I have so much to contribute but I’m not able to because Moebius puts people off, I guess.

Just because I (or ANYONE) look different doesn’t mean that I have a mental disability. God. THAT is the prejudice that needs to go. People assume that about me all the time and it seriously makes me angry. I’m trying not to swear right now.. that’s how angry I am when I think about the prejudice that I and so many other people have faced. Educate yourselves, please. Don’t assume that because someone looks different, they must have a mental disability. That is just the worst.

Job interviews haven’t gone super well. I’m internally worried that I’ll never make it in this communications field after so many years of putting my heart and soul into post-secondary. I’m internally worried that I’ll never find someone who can look past my outward differences. I’m internally worried about having to move out in the new few months. I’m internally worried about finishing this course on time. I’m internally worried about my current job. I’m internally worried about my pony who continues to decline health-wise.

I’m internally worried about a lot of things, and very stressed out, as I know a lot of people are. Having a physical difference adds a whole other element that most people do not understand and probably never will, unless they have experienced adversity physically as well.

However, as I listen to the lyrics of Lullaby, I hear the lyrics,

“There’s no need to blow the candle out,

Cuz you’re not done, you’re far too young,

and the best is yet to come”

And I know that:

A) I am not the only one struggling right now and

B) the best is yet to come. There are so many opportunities on the horizon that I haven’t even acknowledged and I have got to keep reaching for them. It would be so easy to sit back and give up, but then what’s the point of life? You’ve got to make the most of the life that you were given and giving up hasn’t crossed my mind. I’m still putting myself out there because I know there’s a difference to be made in this world and I was given this life to make those changes. Society needs to change their views on differences and disabilities. I know that I have the life experiences to propel that change. I have to do it because I have to make my life count. What good are all these negative experiences if I don’t use them to change society for the better? There’s many things out there for me to do and even if I have to do them alone, I’m still going to do them. Because I have to make my life count for something more than just existing.

So, to anyone out there who is barely hanging on, please know that I’m here for you. I probably have been where you’ve been and I know what a struggle life can be, especially if you’ve got any kind of difference. I get it, I’ve been there.

But the best really is yet to come and there is SO much out there for all of us. We are so much more than what we look like, sound like or what people perceive us to be. We are so much more. We have so much to offer. My dream is to live in New York City and be super involved in the communications field there because to me, NYC is the journalism capital of the world. Also, I’m so in love with that city.

To my Moebius friends, I’ve definitely been where you have been or maybe where you are right now. It’s a daily struggle and I 100% get it. No one has inspired me more than the Moebius community. You guys are my family and I would not be who I am without you all. Good lord, we have so much to offer this world because we know what this world needs. It needs more compassion, tolerance and acceptance and I know that we all can teach that.

Don’t ever give up, keep fighting and know that there are people that will always be there for you.

To my amazing friends, family and support system.. you guys are the ultimate blessing and I’m so incredibly grateful to have my Global friends/mentors, my work friends, my family and my long time friends. Everyone in my life plays such an amazing role.

Let’s get out there and change the world. We all have that power. Harness it and embrace it, and the world will be better. Do good, always.

💕

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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.

Night terrors and college.

Hey everyone.

I realize that I have not blogged for a couple months. I’ve been really busy with school and such. It is now finals week, and things are even crazier.

It is currently 6:42 A.M. and I am wide awake, and had to blog about this.

Night terrors (vivid dreams, vivid nightmares and screaming in your sleep) are, from what I hear, very common amongst those with Moebius syndrome.

I don’t always know when I’ve been screaming in my sleep, but sometimes I wake up and I can recall the dream and that I had been. Well, on this particular morning, I know that I had been screaming in my sleep. I woke up just knowing. And then, I buried my head in my pillow in embarrassment.

You see, the thing is that I live in residence at college. Now I’m thinking, what if others heard? What were they thinking? Were they thinking that someone was getting killed? Like, my mom used to say that the screams were blood-curdling. I don’t know what to do, honestly. It’s such a feeling of shame and embarrassment.

Not that it matters what other people think, but I don’t want to worry people.

Maybe I’m over-reacting but I’m just wondering what people are thinking right now.

Night terrors really suck, and clearly, in my 23 years I have not gotten them under control.

Anyway, just another thing that comes along with haiving Moebius syndrome. I know that people without Moebius have night terrors too, but it’s more common among those with Moebius. I don’t know why, maybe it has something to do with one of the cranial nerves. I always attribute it to the face that I go into really deep sleeps, as in, no one can wake me up for anything.

It’s not a good thing when living in a dorm with paper-thin walls though. It’s embarrassing. And not that anyone should care what others think, but it is still embarrassing.

Courage

Everyone has courage, whether they have a disability or not.

For those with disabilities, however, it can sometimes take more courage to do things that would be simpler for those without a disability.

For instance, interviewing is extremely difficult for me to do. I know that most of my classmates don’t look forward to going up to and interviewing complete strangers either, but for me there is an added challenge. I’m not minimizing the unpleasantness of interviewing strangers for anyone, but I’m saying that I dread it for different reasons than my classmates.

Having Moebius, it affects my speech and makes me hard to understand sometimes. I also have a tendency to talk fast and ramble, especially when I am nervous. This makes it even harder for me to walk up to complete strangers and ask them questions. It’s a inner battle that I have yet to win. I don’t know that I ever completely will.

I’m a journalism major at technical college, so obviously interviewing is a huge part of the program. I probably should have considered this before I applied but I didn’t. My first year of journalism included some interviewing but not extensive and I could usually BS my way through it and interview friends and such.

This year, though, is heavy on interviewing. We have to do it for mostly every class, as we are required to have direct quotes for our stories and email interviews won’t cut it, nor will interviews with my friends.

This makes my life very stressful. My teachers don’t fully understand what a challenge it is, although I know that they really do try. They’ve been nothing short of amazing. I can’t say enough about how amazing and supportive my teachers are. They’re always there to talk to, or for support when I let the stress get the best of me. They’re the freaking best. I honestly do not see myself having come as far as I have without their awesomeness and support.

It is very difficult for me to do though, and I can’t diminish that fact. Not only do I worry that the interviewee won’t understand me but I also worry about what they are thinking about me. Do they think that I have mental incapacities as well? I think sometimes that is the case, and as much as I shouldn’t care about what others think, I do.

Today, I had my first big interview of the year. I interviewed an artistic director of a dance company that is “mixed ability” which means that both people with disabilities and without disabilities dance there. It is really an amazing thing, and I am going to go to a class next week and take pictures and such for the feature story that I am writing on the company. I was absolutely dreading this interview, I was so nervous. I met with one of my teachers before I left for the interview and I think some of what he said resonated with me and helped me get through it. He said that basically, it will take courage to go out and interview. He knew that I had that courage. He also said that there was no way that I couldn’t be a strong person, after everything that I have gone through in life. He told me that he knew I could do the interview, and get through this program but not without a bit of work.

I decided the other day that I’m going to do the best that I can with what I have. I am going to get through this program with flying colours and the best marks possible. Will it be a challenge? It absolutely will. The thing is, I have the most supportive teachers ever and the best classmates so I really believe that I can do it.

So, in conclusion, to all of you with Moebius or ANY disability please know that you can absolutely do anything that you set your mind to and you can achieve your dreams. I am not trying to be preachy here, but you really can. You really can do anything and please let me be the example. This program has thrown me out of my comfort zone many times but I feel that I have overcome a lot and made it through, so far. And I intend to finish out the program doing the best that I possibly can. You may have to do things differently than others, but as I am discovering, that is okay. I typed out the questions that I was going to ask at the interview today and gave the person that I was interviewing a copy, so that he could read them. Honestly, it worked great and even though I don’t love having to do this, I will from now on because it works. It will get me through interviews with ease.

Be okay with that! Be okay with who you are. Really and truly, that is the biggest advice that I have, to be okay with who you are. Love who you are. It will take you so far in life.

The importance of a support system.

Hi everyone!

I am trying to blog on a regular basis but with school starting again, it’s difficult to find the time.

So, I have been back to school for about two and a half-ish weeks now. For those that don’t know, I am in my second year of the journalism program. It’s a two year program so this is basically the home stretch.

So far, classes are going well. I love my online journalism class, as we have to create an online publication and mine is based on raising awareness of disabilities in the city. It is going to be really fun and hopefully really rewarding as well. My other classes are News Writing and Editing, Visual Journalism (video) and Journalism Projects (writing and editing stories for the student journalism newspaper). They are all going pretty well and I am excited for this year.

Our classes are great in the fact that I have the same people in my class for every class. The thing that kind of sucks is that all of the sections were mixed up this year. Thankfully, our class this year is made up of almost everyone from my section last year and that is super great! I love everyone in my classes that I knew from last year, they’re some of the best people ever.

When you’re in college, having a support system is crucial. This is especially true if you have a condition that brings challenges that other students don’t have. It will make life very difficult if you don’t have this support. I feel like I have found that support system in my friends from my classes and most importantly, from my teachers. My teachers, who will take time out of their busy schedules to listen to my concerns, struggles or challenges are the best people ever. Their knowledge is profound, as they have actually been in the journalism field for years and their willingness to go out of their way to help with anything is outstanding. I am so, so lucky to have such amazing people that I know are always there to support me. It is going to make this year so much easier having their support. I don’t know if they read my blog but if any of you are reading this, I just want to say thank you so much for everything that you have done and continue to do to help me through this program. I know that I have challenges that other students don’t, and your support is just truly amazing.

My journalism classmates are the best. They are also super supportive of me, which I appreciate so much. I just can’t say how outstanding everyone here is, from my journalism friends to my teachers. The support that they give me is something that I do not take for granted and it makes my classes so much better. I am doing a video project for my visual journalism class which entails interviewing a few of my classmates and asking them two questions about if their perception of those with disabilities has changed now that they know me. Some of the answers that they gave almost brought a tear to my eye, they were that sweet. You guys are some of the kindest souls on the planet and I could not ask for better classmates or friends, so thank you!! ❤

And to my best friends who are outside of school, I also am so lucky to have you guys in my life and have people that know me possibly better than I know myself.

Moebius syndrome Conference 2014. Amazing, amazing.

So, this past weekend (July 18-20) I attended my third Moebius syndrome Conference. I would have to say that it was probably the best one yet. It was in Bethesda, Maryland which isn’t too far from Washington D.C. We did a couple tours of D.C, and it is an amazing city.

A quick rundown of some of the events:

Our flights to Washington were not smooth. We missed our connection in Toronto because of the incompetence of Air Canada. We were then stuck in Toronto for 6 hours, as our next flight was also delayed. It was a nightmare but we finally made it to the conference hotel at about 1 A.M.

On Friday morning, we went to the hotel restaurant for a buffet breakfast. It was actually really good. I could not wait to get to the conference area so that I could see my Moebius family, as I call them. When I walked into the conference vicinity, I immediately had people coming up to me and saying “hi Kelsey!” I immediately felt at home. I registered, said hi to more people and then went to see the keynote speaker and the opening of the conference.

The keynote speaker was a man from England named James Partridge. When he was young, he had been in a car fire and had severe burns to his face. He went through a ton of reconstructive surgery after that. As someone with a facial difference, he saw the prejudice and stigmatism attached, so he started a foundation called Changing Faces. Based in the UK, it is a support group for those with facial differences. Please check it out- https://www.changingfaces.org.uk/Home. It is really an amazing organization and I am hoping to be able to become involved with it somehow.

After the session was done, I went to say hi to Rick Guidotti. I met Rick at the last conference in 2012 and he is one of the most amazing, beautiful people that I have ever met. He used to be a fashion photographer who photographed for Elle, GQ, Vogue, etc etc. He worked in Milan and Paris and all of those beautiful people. One day, he ran into someone with Albinism. He was so intrigued that he went to medical textbooks to get more information. The images that he saw were so sad and sensationalized that he knew that there was something he could do. He started Positive Exposure which is an organization that brings awareness to genetic/physical differences. He goes around the world to different conferences photographing those with differences and he brings education to schools, medical experts, researchers, etc. Rick is honestly who I aspire to be. He is incredible. I ran into him so many times over the weekend and he always had a hug for me. He photographed me, and some of my friends wit Moebius and he just has that ability to make you feel beautiful. I cannot say enough about how much of a gorgeous person he is, and I beg all of you reading this to PLEASE check out his work and what he does with Positive Exposure. www.positiveexposure.org. Rick, you’re amazing and you’re changing the world for the better.

I attended sessions on various subjects that apply to people with Moebius syndrome. I went to a Just for Adults with Moebius session, where we talked about things that we go through. The thing about these conferences is that I feel at home. I feel safe, I feel like I can just be myself. It’s kind of like, a bubble. We’re all together, away from the feelings of the outside world. I didn’t feel like everyone was staring at me, I didn’t feel like everyone was wondering what was wrong with me. I was in a place with people who know exactly what I go through. They know. As much as I love my friends and family in the “real world”, they don’t fully understand the burdens that come with living with a rare condition. How could they possibly? I know that they try and don’t get me wrong, I know that they sympathize and empathize. I know that they care, but people with Moebius can relate to absolutely everything. It is an amazing feeling. When I was at the sessions, listening to people talk about their challenges and struggles, I just found myself nodding my head in agreement. We’re such a close knit family and community and I am blessed to know such beautiful, outstanding, inspiring people.

To my Moebius family, you are everything to me. You mean more than you know, I love and miss you more than words can possibly say. The past 5 days were the best ones that I have had in a long, long time. I miss you all dearly. Am I the only one struggling to come to terms with being back in the real world? It’s really hard. You are all beautiful people. Never forget that. I hope that this weekend meant as much to you all as it did to me. Just because we’re apart now though doesn’t mean you’re alone. You’re never alone. We’re a family and we’ll always be there for each other.

So now it is back to real life, back to reality. One thing was reaffirmed for me this weekend though. A fire has been lit inside me to really throw myself into figuring out a way to raise awareness of Moebius. Rick and James really inspired me. I want to be like them, I want to create something that will help change the world. As Rick said, “Change how you see, See how you change.”

Moebius family, you’re always in my heart and on my mind.

New ideas.

So tonight, I was talking to someone younger than me who also has Moebius.

He had sent me a friend request, and I totally forgot about it until tonight and his mom asked if I would be willing to add him so he could talk to me about having Moebius and such. I, of course, am willing to talk to anyone with Moebius and give them advice and tell them my life experiences in hopes of being able to help them.

I definitely love the feeling of being able to help those younger than me navigate through some of the challenges that they have, because I had the same challenges growing up.

So this actually gave me an idea. I was thinking of maybe doing some kind of social work. Not a psychologist or anything like that but someone who talks to those with disabilities to help them through the challenges that they are facing. My speech does create a barrier sometimes, and this is an issue but I think I can still find a way to communicate. People with disabilities go through things that “average” people just can’t completely understand. I have gone through these things, I have experienced things that no one else I know has. If I can use these experiences to help people, then they would be worth it. I want help people navigate through their lives with disabilities and I really am hoping to make this happen. I just can’t let things, like my speech, hold me back.

If anyone has any ideas on how I could help, please feel free to comment here. Maybe I could set up an online thing where people with disabilities can go to ask questions, etc. I know that some sites like that exist but the difference is that I think having a disability myself, I definitely have insight that people without disabilities don’t have.

How to raise more awareness?

So, by now most of you probably know that I believe that it is my mission in life to raise awareness of Moebius syndrome. In case this is the first blog of mine that you’re reading, (welcome!) Moebius syndrome is an extremely rare neurological condition. No one knows for sure how many people it affect, but it is thought to have a prevalence of about 1 in 500, 000- 1, 000, 000. Moebius is an underdevelopment or malformation of some of the 12 cranial nerves and causes facial paralysis, limb abnormalities, speech problems, feeding problems, etc. What people sometimes don’t understand is that Moebius doesn’t affect intelligence. Just because we look or sound different doesn’t mean that we have any cognitive issues.

My mission is to raise awareness of Moebius so that people don’t have misconceptions about us. I want people to know that we are just like every other person, we just look a little different or sound a little different. I’ve had so many negative encounters over the past 23 years, I don’t want future generations to have to go through that. That is why I want to raise awareness right now.

i have been sharing my blog on Facebook and Tweeting at anyone who will listen but there has to be a better way to get the word out there. I want to go national and global with this, that would be my goal. I know that it will be difficult but I am willing to put in the time and effort. Whatever it takes, I will do it if it means getting information out there about Moebius and educating people.

Please let me know your thoughts and ideas on better ways to raise awareness. Any comments will be so greatly appreciated! Please, I am desperate for ideas!!

Thank you! Just trying to take what I know and make the world a better, more tolerant place!

Job hunting and Moebius

I am officially done my first year of college! It seems so surreal. It does not feel like it has been 8 months! It was an amazing year of growing, changing and overcoming obstacles. I met so many amazingly great people and did things that I didn’t know I could do.

Now that I am done school for the summer, it is onto the job hunt. I know that everyone has trouble in some form or fashion while job hunting but I think those of us with Moebius have an added obstacle. That obstacle is having a noticeable difference, whether it is how we look (facial paralysis) or how we sound (speech problems due to malformed tongues, etc).

I have been searching for something within the journalism field but those kinds of jobs are hard to find especially for a student with no official accreditation. I have now moved on to searching for jobs unrelated to journalism. Anything will do for the summer. I would totally take an administrative or secretary job but these require talking on the phone, talking to clients, etc. I can be hard to understand because of having Moebius so I feel that those kinds of jobs would not work for me. Even for retail type jobs, one of the job requirements that is always present is “excellent communication skills”. I can talk and converse with people but I can’t deny that I can be hard to understand, especially to people that don’t know me. I feel like this is a problem that all of us with Moebius face. Please correct me if I am wrong, as I don’t want to put words in anyones mouths.

It is a very difficult situation. I have to find a job for the summer. My family is pressuring me to do so and I need to make some money before school starts again in September. I know that a lot of people don’t understand how difficult this is for me, so I ask you to do this: Imagine for a moment that you have a physical different. You look different than other “normal” people. This causes people to stare sometimes and ask awkward questions. You cannot blink or show facial expression. You can’t even smile. Your speech is difficult to understand and this, combined with your physical difference makes people wonder sometimes if you have mental impairments also. This is my reality, everyone. It really is. This is my reality and this is the reality of others that have Moebius syndrome.

This is why I feel so strongly about raising awareness of Moebius. I think it is so important to make people see that even though we may look or sound different, we are just as cognitively capable as everyone else, if not more so. I know that I say this in every blog post but raising awareness is my life goal. This is one of the reasons that I am in a journalism program. The written word is the best way to raise awareness, I believe.

I’m not going to combine two blog posts so, stay tuned! There will be another post coming either later today or tomorrow.

I want to leave a legacy in this world and I want that to be improving the lives of others with Moebius. My hopes are that future generations will not have to experience the hardships that I have.

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!