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.

💕

🇨🇦

A heartfelt reminder to my friends with and without Moebius.

I’m 24 years old and I am finishing my second year of college in a couple months. I also just found out that I got accepted to university in the fall.

Did I ever think that I would get this far? Absolutely not.

As many of you know, I have a rare neurological condition called Moebius syndrome. It causes facial paralysis, speech problems and has many other manifestations.

When I was in high school, I did the bare minimum to pass my classes. I skipped a lot of classes, and whole days of school. I was a terrible student. The reason for this was that I never thought that I would amount to anything and I didn’t think that there was anything out there for me. Because of Moebius, I never thought I could be anyone or do anything meaningful with my life. I really saw no future for myself.

Then, after a few years out of high school, I got my first job. Yes, my first job. It was not a fun job, but it was a confidence booster if nothing else. I thought to myself, wow, I can do this and I did get a job when I never thought that I would be able to.

I then found out that I had been accepted to SAIT into the journalism program. My first day at SAIT was when my life changed forever. I saw it change before my eyes. I had no one at SAIT. I knew not one soul on my first day of classes. I hadn’t even met my roommate yet. I was completely on my own and that had never happened to me before.

Fast forward to a year and a half later and I have to say that SAIT has been the best thing that has happened to me, ever. It has been the best change that I could have made in my life. It wasn’t an overnight success, that’s for sure. It took weeks and months to get to a point where I could say wow, I am really happy here. But that’s where I am right now. I’ve never been happier, more optimistic about the future.

SAIT’s been nothing but good. From my amazing, supportive teachers who have never been anything but the best, to the friends that I have made here along the way. Not only are the people in my life here amazing, but I really love what I’m doing. Some things like interviewing are still hard for me but, as one of my teachers even said to me a few days ago, I have grown as a person so much in the last year and a half. Now I have university and that chapter of my life to look forward to.

My point is this, and I can’t stress it enough: Never let having Moebius (or anything) hold you back. I know that a lot of my Moebius friends absolutely don’t and are pursuing their dreams, passions and goals as I am now. My message is for those of you who were where I have been in the past. Never doubt your potential and never, never doubt that there is something is this world for you because there absolutely is. Whatever your dreams and passions are, follow them! Don’t waste years of your life like I did. Don’t spend your life in fear, sadness or despair. You have one life to live and whatever it throws at you, always make the best of it. I’m not trying to sound like a preacher here but if I can use my life experiences to help even one other person see their self-worth, then that is what I want to do. I’ve learned that if you follow your passion and find a group of supporters, you can always live a full and accomplished life. Having Moebius doesn’t bar you from having a life. It might make things a little more difficult sometimes but without struggle there is no progress. Never feel like less because Moebius syndrome is not who you are, it’s what you have. You are so much more than that.

This is all true even if you don’t have Moebius but something else is holding you back. My message is to find something that you are passionate about and pursue it! For me, it is journalism and raising awareness of disabilities. Everyone deserves to know that they matter and that they are so capable of being great and doing great things in this world.

 

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.

Used to it.

I know that I have blogged about this before so I won’t go blog crazy here but I noticed something today. I went to apply at a few places for a job for the summer. I need a job but am not getting any callbacks so I am getting a little desperate.

Anywho, after I went to take my resume in, I went to the Starbucks nearby. I contemplated what I was going to order and decided to go for the green tea frappuchino. I said it three times and the guy still wasn’t getting it. He went to the screen thing to try and figure out what I was asking for. He then went to get someone else. I said it a couple more times and she finally got it. Obviously no one made a big deal of it or anything, but I noticed a change in myself. I think if this had been a year ago, I would have been humiliated and focused on the ordeal for days to come. I wasn’t that phased by it. I got my drink, got in my car and drove home. I didn’t actually think about it again until now, sitting here writing this blog. I mean, it’s a bit embarrassing to have someone completely not understand what you are trying to say but I guess I have gotten used to it. This has happened more times than I could ever count so I think I kind of expect that people won’t understand me now. Normally that’s not the case but today it was.

The message here is perseverance. Don’t get flustered if someone doesn’t understand, and don’t change what you are trying to say or order. Keep repeating and write it down if necessary. It might make you feel self conscious to do that but hey, who cares what others think. I have learned to stop caring what people around me say or think and start living for myself, pushing for what I want or need. I mean this in the sense of having Moebius and what other people think pertaining to that. Obviously we need to care about others and take their needs and thoughts into consideration, unless they are negative. As people with an obvious physical difference, we do not need that added stress in our lives.

To those with Moebius or other differences, never let others negate or destroy your self worth. Hold your heads up high because you are beautiful and have just as much right to walk on this earth amongst everyone else. We are not the only ones who struggle with self worth and we will not be the last. Keep your self worth close at heart and don’t let others destroy it!

Also, a mention for the people of Alberta. It has been exactly one year today since the southern Alberta flood in 2013. I remember that day well, as I too was impacted by the floods and was evacuated via combine. The resilience and compassion of this province is outstanding. We made it through. There is a lot of work still to be done but we made it through. Continue to support your neighbours if they are in need. Proud to be from this amazing province.

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.

23.

It is officially December 14th, my birthday. 

Time to make year 23 the best one yet

All decisions have consequences and I am quite aware of this.

My family, mainly my sisters, have made it very clear to me today that they don’t approve of my recent tattoo spree.

Honestly, after years of caring what everyone thought of me and feeling like nothing I did was ever good enough, I think it is safe to say that I no longer care what anyone thinks.

I am almost 23 years old and I am quite capable of making decisions for myself. All actions and decisions have consequences and I am quite aware of this. I am tired of people thinking that their opinions should have an impact on me and that I should heed their advice. I will do what I want. The girl that works at the tattoo shop that I go to is covered in tattoos. She is super pretty and the tattoos don’t detract from that. As she said, there are worse things that I could do to myself.

Tattoos tell stories and I am telling mine. Will there be more? Absolutely.

That being said, I do take the advice that people (family, especially) give me to heart. I do think about it and I do consider it. Does this mean that I am obligated to do what people think I should do? I’m tired of avoiding doing things because of what people will think. I am the one who has to live with these tattoos for the rest of my life, this is the consequence to my action. It’s not a bad consequence to me, however. I am totally in love with the tattoos that I have, especially the one that I got yesterday. Will I regret them in 10, 20, 60 years? I don’t know. However, I am NOT going to live for the future because the future is never promised. Do things that you want to do, love who you want to love, get the tattoos that you want because you don’t know how long this life will last. Make it your best.

No regrets.

Interviews are just not my thing.

Obviously the world of journalism is about communication. It is about getting information from sources to put together a good story. You have to talk to people to find out details. You have to interview people to get quotes which are essential for any kind of news story. Yes, I understand that. I think that this is one thing that I largely overlooked when getting myself into this journalism program.

My problem is, I think, that I put too much emphasis on my speech issue. In my own mind, I can’t talk to anyone because no one will understand me. Whenever I talk to someone, no matter who it is, I always am thinking somewhere in my mind “they have no idea what I am saying”. This is why I avoid talking to strangers. I avoid social situations. This is sad but so true. No one knows, not my friends nor my family, how difficult it is. I don’t talk about it to anyone, ever. I find it awkward and embarrassing I guess. I don’t want to bring attention to the fact that I have a speech issue and I sure am not looking for a pity party. Life is not going so dashing at this point. I know that sounds super dramatic but it is true. Although I would never say that I hate my life, ever, I just know that some things have to change. The way that I see myself must change and I know that no one can do that but me.

Anywho, this week I am interviewing a friend(ish) that is a DJ at a local radio station. He’s super cool. I’ve only met him once but my friend is pretty good friends with him. I’m stressing out about it already. I am typing out the questions that I plan on asking and with every one that I write my mind set is “what if he doesn’t understand what I am saying?” What if it is super awkward? I don’t know why I put so much stock in how I speak. I really don’t get it. I have many friends in the Moebius community and none of them seem to have this issue, or at least I have never heard about it. Some of them work for the government, one is a professor and one worked for a call centre! These people are huge inspirations and they are examples of every day heroes in my eyes. They don’t let their differences hold them back. I am so, so lucky t know such amazing people. I think there have just been so many instances over my 22 years of not being understood thus leading to awkward situations that I just have started to let the fear rule me and my life.

I don’t know how to stop it and that, obviously is the problem. I looked in the mirror the other day and said to myself “you are not less of a person than anyone else. You are who you are and that’s good enough” but I don’t think it sank it. Actually I know that it didn’t as I am sitting here writing this.

So what do I do? I know that the only way to grow as a person is to get out of your comfort zone and I am trying to do that more often, but it is tough. All I can do right now is prepare for this interview and hope for the best.

Some day I will not be ruled by the things that make me unique.

Some days are infinitely better than others.

So, it’s 2:30 AM and I just got home. I don’t stay out this late ever.. But I had the most amazing last 10 hours!

It started off by volunteering at an event called Light the Night which was for the Leukemia and Lymphoma Society of Canada. It was an amazing event. I was working behind the incentives table, giving people who had registered and raised money lanterns, shirts, hoodies, gloves, etc. There were three colours of lanterns; gold, white and red. Gold was for if you were walking in memory of someone who passed away from blood cancer, white was for survivors and red was for walking in support of someone with cancer. The most emotional time for me was when a mother came to get a blue shirt (for survivors) for her four year old daughter who has survived cancer. Four years old and she has beat cancer.. I mean, think of all she has been through in her short 4 years. It really hit me. And there were thousands of people there. The most popular colour lantern was red. There were far too many gold lanterns given out but also a lot of white ones for survivors. It was an incredible event and it really goes to show that everyone knows someone affected by cancer and I believe that we will see a cure in our lifetime. I can only hope so. Also, after I got my volunteer shirt and lanyard, I was walking towards where I was supposed to go and I felt a tap on my shoulder. A girl that I had worked with at the Underwear Affair two years ago saw me and came to say hi. Not going to lie, I didn’t remember who she was at first but then she mentioned the Underwear Affair and I knew. We hung out a bit after the event and she gave me a ride to where I was going. Such a nice girl, I was definitely glad to see her again!

So while I was working there, a friend texted me and said let’s go out. Come to this club because her sister’s friend’s band was playing. I made it to the club after going to the wrong place (oops) and it was AMAZING. The drummer who is a friend of my friends sister came and sat with us between sets and he was gorgeous. Everyone was dancing and having an awesome time. It was an amazing day and I am grateful for some pretty amazing people.

My ears are ringing and I think it’s time for bed.

❤