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. 

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One thought on “My life with Moebius: Then and now.

  1. Hi Kelsey,
    As someone who also grew up with Moebius (I’m 24 now!) I can identify with much of your experiences and aspirations. This is a great blog. Keep writing, dreaming & enjoying life!

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