Our time on this earth.

A relative of someone that my dad knows was recently diagnosed with cancer and given three weeks to live. 3 weeks. When my dad told me this, it stopped me in my tracks. Even though I don’t know this person I kept thinking about them and how I cannot even fathom what it would feel like to be given that news. 3 weeks left on this earth. I can’t get over it. It got me to thinking, as most things do. It reminds me of Tim McGraw’s song with lyrics that go like this “this might really be the real end? How’s it hit you when you get that kind of news?” What would you do if you got that news? 3 weeks to live.

The thing is, no one knows when their time on this earth will be up, but we live like we will live forever. We think we have so much time ahead of us but that’s clearly not the case. We just don’t know how much time we have left but we tend to take our lives for granted and I am not going to lie and say that I don’t sometimes. We should take a moment every day and be thankful to have that day. Quoting another song here, this one is by Paul Brandt (Canadian country singer) “We’re not promised tomorrow. Like vapour these days here are fading away”. The song is called Live Now. We should all be living in the moment, in the present day because tomorrow is not a guarantee for anyone, ever. 

It also got me to thinking about living with Moebius. I have let it hold me back in the past from doing some of the things that I wanted out of life.. But I have realized that life is too short for that. It’s too short to have insecurities and weaknesses that get in our way of really living. If you need help to get through things, ask for help. It’s okay to seek help from therapy, psychologists, friends, anything or anyone that will help you live the best life that you can, the life that you want.

So, if you were given a limited time to live what would you do? Would you quit your job and travel to places that you’ve always wanted to see? Would you spend it with the ones you love? Would you regret not living the life that you wanted? You would have to live the years that you thought you had left in three weeks. It boggles my mind to think about because I never really have before. There’s so much that I want to accomplish in my life. I truly believe that we are all living the lives that we are for a reason. We are all here for a reason. It’s not just by chance that we are here. I really believe, like I have said before, that my purpose for living and my reason for being on this earth living with a rare syndrome is to change the way people with disabilities are perceived and to raise awareness of not only Moebius Syndrome but all other disabilities and physical differences. I want to spread tolerance and acceptance. We all have a purpose. Look deep inside yourself and you will find yours.People my age, we are the next generation and we have the power to change the world for the better. It’s like the saying “be the change you want to see in the world”. If there’s something that you see, an injustice or something wrong with the world that you are living in, you have the power to change it. It sounds like a cliche but I really believe that we all have the power to change the world and make it such a better place. There’s so much wrong with the world that we live in today but I have faith that in the years to come, we will make it better. We have to. I think that instead of living like we have 40, 50, 60 years left in our lives, we should live every day like it could be our last. Love who you love, see the places that you want to see, don’t be so constrained by money, change someone’s life for the better, read the books that you want to read, take naps when you want to nap, don’t let your job rule your life. Just live. I need to start doing the same. There is just so much to accomplish in life and we don’t know how much time we have to accomplish these things. I want to be able to look back on life and say wow, I am really happy. I’m proud of the things that I did and people were changed for the better. We all have purpose and we all have meaning. Live your life. And start living now!


It’s Time.

This post isn’t so much about Moebius but it is about self image and getting healthy.

I am guilty of stopping at Tim Hortons almost every day after work and getting an Iced Capp and a muffin or donut or some other unhealthy snack. I am also guilty of buying way too much candy, pop and junk food. It’s time to change and get healthy. What spurred this is very recent. Like, 2 hours ago recent. I was outside and was taking a few pictures. When I saw the pictures it hit me. I’m not healthy and I am not a healthy size. I’m not saying that I am super obese or anything but just not happy with my body. I know all the magazines now are saying “all women have curves” and “love yourself” and all that but that advice is misleading. Yes, you should love yourself no matter how you look but you have to realize when you’re not at a healthy weight. It is not how you look, it is about being healthy. I am about 5′ 3″ and about 165 pounds probably.. Maybe a bit more. That’s not good. I know that I’ll never be stick thin (although I was when I was younger) but there are definitely pounds to be lost.

So, my new regimen is going to be this:

1) No more stopping for fast food after work. Limit to once a week at most.

2) No more buying anything unhealthy such as candy, cookies, pop, chips, etc

3) Exercise. Even if it’s going for a short walk somewhere. I lift heavy boxes at work all day.. I’m seriously building muscle just doing that.

4) Eat healthy! Buy healthy food and snacks. Spinach, chicken, salads, whole grain food, etc.

So now I am looking for suggestions, blog readers! If you are reading this please comment and suggest one healthy food that you like to snack on or even some healthy meals! I really need some ideas!

It’s time for change to go along with all the other changes that are soon to be taking place in my life. It really is time to get healthy and I am throwing myself into it this time. It’s not about how you look, it’s about health. Being overweight is not healthy.. It’s hard on your organs, mostly your heart and it can cause onset of diseases. I’m taking this chance to change how I eat and live. It’s not a short term diet, it’s a lifestyle change! It’s never too late to start living well!

My life with Moebius: Then and now.

The idea for this blog post topic stemmed from something that I posted in a Moebius group on Facebook. I posted a picture from the MSF conference 2012 of all the adults with Moebius. My post was about what I would tell the future generations and even our generation of people with Moebius to encourage them and help guide them through this life and to help them not make the same mistakes that I have made. For the purpose of bringing my blog readers up to speed on what I posted, I will repost it here: 

“If I could talk to future generations of people with Moebius I would say this: Never give up on your dreams. Having Moebius will not stop you from living your life to the fullest. You will achieve your dreams and you will be in a light in this world. You will change the world for the better. Never stop believing in yourself. 
I felt discouraged for years about having Moebius and thinking that I would never amount to anything in life. Now I have big dreams and goals and I know that I can’t let anything stop me from achieving them and I don’t want future generations (or even today’s Moebius kids and adults) to waste a second of their lives. I wasted too much of mine already!”

So, I’d say I have had three stages in my life with Moebius.

1) Ignorance,

2) Living in a shell, and now

3) Acceptance. 

The first 14-15 years of my life were spent pretending that I didn’t have something that made me different from others. I tried to ignore it and pretend that Moebius Syndrome did not exist. It was made clear to me through teasing, name calling, etc at school that it did indeed exist. These weren’t extreme cases, they were just rude remarks made in passing. It wasn’t relentless bullying which I credit mostly with living in a small town and growing up with these kids. There were some that would make fun of anyone for anything and I guess that I was just one of their targets sometimes. It was okay though because I always had friends who would be there. 

The next stage was living in a shell when I could no longer pretend that Moebius was not a part of me. Actually, another stage of this life with Moebius was discovery. This happened in 2010 when I attended my first Moebius Syndrome Conference. With it being such a rare syndrome, I had never in my life met anyone with Moebius and to be honest, I didn’t know others with it existed. I had never been part of the Moebius world. So when I attended the Conference in 2010 it was a complete life changer. I got involved with the Moebius community and met some of the most amazing people. The most amazing, inspiring people who I am just so honoured and privileged to know and be able to call my friends. I am now a part of Moebius groups on Facebook, Moebius websites and I have taken on the responsibility, along with some of my friends to dedicate at least a part of my life to raising awareness of Moebius. This is one of my goals in life. I believe that if we have something that makes us different, it is up to us to educate people on it in order to create a better future for the future generations of people living with this difference. We need research into new treatments, causes and just general public knowledge so that people who may look different do not get stares, comments, etc from people who are uneducated on what these physical differences are. I feel that people who don’t know me see me and think that I have real mental disabilities because of the way that I look. I would like to think that that’s not the case. I am trying to debunk these misconceptions about people with Moebius. This is one of my main goals for this life. 

Anyway, back to the living in a shell stage of my life. There was a rather significant thing that happened in May of 2009 that changed my world. To some it may not sound like a big deal but to me it was. It changed completely how I think. It’s a long story but in essence, someone on my Facebook friends list stole pictures that I had personally posted and make a rather defaming profile about me on another social networking site. If that happened to me today, I’d be going to the police but at that time I didn’t do anything. The effects were long lasting and still exist today actually. For about 2 years after it initially happened, I was paranoid that every person that I sae in public with cell phones were taking pictures of me to use against me. I deactivated my Facebook account because I didn’t trust anyone. I deleted a whole bunch of pictures and now my lists on Facebook are super strict. I only allow those who I am close with or trust really well to see my pictures. i actually have two lists of people who I set to be allowed to see most of the stuff that I post. People post way too much on the internet. Posting pictures of yourself and information about yourself on public websites isn’t smart in my opinion only because I know what can happen. So for about two years, I lived in a shell. It was hard to go out in public. Now I think I have recovered mostly and am into the third stage which is acceptance. What I mean by that is that I am in a place where I can say that yes, I do have something that makes me look and sound different from others. But it doesn’t define me, and it will never define me. It won’t hold me back anymore. I can’t be afraid to talk to people that I don’t know and I can’t be afraid of what people will think. I am still learning how to start conversations with people and get engaged but I have faith that this will come in time. Everything in life will work out for the best, the way it is supposed to. I’ve got a job, I’m going to school in the fall, I’ll be living with a roommate. I’ll be changing and growing. Moebius will be a part of me obviously, as it always will be but I must learn how to live in harmony with it and remember that it does not define me. I have to tell myself that I am capable of as much as anyone else, and that what I want to achieve in life can be achieved. It may take a bit more work for me than it would for some but hey, I am used to that! 

So looking back on my 22 years, I would like to let the younger generation of people with Moebius know that it does not have to define how you live your life. Go for your dreams. You will not fail because of this physical difference. It will only make your life better by making you a more understanding, patient and more tolerant person. Trust me. Don’t make the same mistakes that I did. Don’t waste a part of your life. Live your life, live your dreams because you are more than capable. I just cannot stress this enough.

Live your life, chase your dreams, look ahead to the future and all that you can accomplish.