So I read today that Moebius affects 2 to 20 per million births. That is rare. You know, I actually think it is kind of cool to be able to say that I have something so rare. You have to find the positives and not dwell on the negatives. Moebius is so rare that a lot of doctors even have not heard of it. I find myself educating people on it pretty frequently. They always find it interesting.
I think that standing alone with Moebius (or any other rare condition) is difficult. You may think that you are the only one who has to go through the struggles. I am extremely blessed to have a whole extended Moebius family. I may only see them once every two years but I am so fortunate to be able to communicate with everyone on a daily basis. It makes my life so much better and I know that I am not alone, and more importantly, I have people that I can go to that go through the very same struggles that I do. I have people who understand what I go through. What more could I ask for?
They’re my family and I am so grateful for them. Love you guys!
I was just looking back at pictures from this past weekend. The 10th Moebius Syndrome Conference. Well, to say the least, I miss you all. I feel like we are just this big family, a community of people who come together for a common cause. Something that ties us all together. Something that we all relate to. Before Denver 2010 , I had not met anyone with Moebius. I wasn’t really involved with the Moebius community. I was trying to go through life pretending that Moebius didn’t exist. I remember being embarrassed when I joined the first Moebius group on Facebook. I felt like it was a stigma, something taboo. I never talked about it and felt awkward even saying the name of what I have. It’s sad really. Anyway, you guys are the reason that I am sitting here typing this today. You’re the reason why I am OK with myself. You’re the reason that I am able to talk about it, why I want to spread awareness. The way I used to think was not OK, and I don’t want anyone to ever feel like that. Moebius doesn’t define me, but yet, it’s who I am. Embrace it and try to raise awareness because that is the most important thing. Anyway, back to the conference.
Those 3 days were the best days that I have had in a long time. It was so amazing to meet all of you that I have met through our groups on Facebook, and to see all of you that I met in 2010. It’s like I go there, and I am in the presence of all of you and I feel more comfortable than I ever do just in a normal setting. I feel like we have common threads that hold all of us together. We’re all very different people but we have a very concrete thing that brings us back to the same place. Conferences are just the light at the end of a 2 year tunnel, if that makes any sense.
The sessions were great, seeing all of you was amazing. And going to the 2 conferences that I have been to is not something that I would change for anything. You guys are my family and there’s nowhere else that I’d rather be than to be with all of you. It’s a family gathering and I wouldn’t miss it for the world.
This post isn’t directly related to having Moebius. I am taking Driver’s Ed at the moment. It’s hard. I feel totally uncomfortable, like I’m doing things wrong and I kind of feel that I won’t ever get my license. People are telling me “Oh, practice and you’ll get better” and that’s probably true but I don’t feel like that will help. I dread driving. I really do. I either go to slow, don’t keep my speed constant, turn into the wrong lane, etc. It’s overwhelming. I know that with practice it must get easier.. I hope. Hopefully it gets better because that’s what I need.
People are right.. It does help to write things and get them off your chest!
Having Moebius is hard. So much so that I sat staring at the phone for a good 10 minutes before dialling the number that I needed to call. I know the feeling of that awkward silence on the other end of the line, the one where you know that the person has not understood what you said. This time though, it went fine. It went well. She got what I was asking, put me through to someone else and then the next person got it as well.
So, 10 minutes of stalling and putting it off for a 3 minutes phone call that actually went OK. This time.
I know it may sound trivial to some but it’s a real issue for us with Moebius. Or maybe just me.
Another post to come later.
Well, I decided to start a blog. I think I started one before but it kind of fizzled out. So here’s my brand spanking new blog. What will I blog about? Things, stuff, life. A lot goes on in my life.
I am 21, Canadian and I have a rare neurological condition called Moebius Syndrome. This blog will be a resource for me to try to raise awareness of Moebius. You see, a lot of people, even doctors have not heard of it. I strive in life to raise awareness of this and other disabilities.
Anyway! Welcome to my blog if you are reading this. It’ll be fun!
Welcome to WordPress.com! This is your very first post. Click the Edit link to modify or delete it, or start a new post. If you like, use this post to tell readers why you started this blog and what you plan to do with it.