What is Moebius Syndrome? A refresher.

I know that I must have done a post like this before but by now it’s buried by my myriad of blog posts. I also have a page about what Moebius is (at the top of the page) but I know that not everyone goes to the different pages.

Sooo here is a refresher course of what Moebius in my ongoing quest to raise awareness about it. Moebius Syndrome is the malformation or underdevelopment of the cranial nerves. These nerves control a lot of things including facial movement hence why people with Moebius have facial paralysis. There’s a lot of different things that can go along with having Moebius such as speech impairments, hearing impairments, deformed limbs, vision problems, dental issues,  eating troubles sometimes due in part to a paralyzed tongue (which I have) and some kids with Moebius are also on the autism spectrum. Now these are only [b]some[/b] of the physical effects of Moebius Syndrome. There are also mental/psychological effects too. Social anxiety due to looking/sounding different, depression (Obviously people without Moebius suffer from depression as well but it can be prevalent solely due to having Moebius), feeling inadequate or feeling like your life will not amount to much if anything (I know this firsthand because I felt it all through high school). There are a lot of things that go along with having Moebius. I haven’t covered all things that affect people with Moebius I know but these are the most prominent and common. For me, Moebius affects my speech and like everyone else with it, I have facial paralysis which means I have no expression and actually can not move my face at all. I had what is called “Smile Surgery” in order to be able to form some semblance of a smile. It’s not the same as a “normal” smile but it’ll do I guess. I will never forget picture day in elementary school. I used to dread being asked to “show some teeth!” because I couldn’t. I could barely just smile. Another thing about Moebius, we don’t really blink. A lot of people have to use eye drops to keep their eyes lubricated because of this but my eyes seem to be fine without it. I’ve had so many surgeries on my eyes and the muscles. I had to have laser eye surgery three times because the correction needed was so great. Our muscles are not the same as “average’ people so I have had to have eye muscle surgery to help my eyes work better together. They were completely frozen in place when I was younger. They couldn’t move side to side or vertically. The surgeries seem to have helped but my left eye still drifts out despite having yet another surgery to fix that. A co-worker asked me the other day what eye I see out of better and where she should stand so that I could see her. Okay, I can see you wherever you stand. It’s just it looks like I’m looking two different places. I hate it. I’ve made an appointment with my Ophthalmologist to see what further we can do about it. I’ve already had surgery twice to try and correct it so I am not sure what more he is going to be able to do. Hopefully something. Probably the biggest thing that is affected for me and what is most noticeable is my speech. It’s not as clear as I wish it was. I’ve let it hold me back from a lot of things as I know I have outlined in my previous blogs. It’s hard to let it not hold me back, however much I wish it didn’t. I feel like I am getting better in dealing with it but it’s very difficult sometimes. The thing is, some of my Moebius friends are teachers, working for their cities or towns, talking on the phone in their jobs, working with the public and they are doing just fine. I think that our prior circumstances affect our future a lot of times so I know that I must have had some pretty big issues with my speech in the past and those issues are catching up to me and making me even more conscious about it. I know I told the story of someone calling for my mom on the phone when I was like 10. She was out somewhere and I tried to explain this and the lady abruptly said “I can’t understand you”. That is only one example of the multitude of things that have gone on in my life. 

I’m tired of feeling held back. I want to empower not only myself but others with Moebius. I don’t want kids with Moebius to grow up to feel the way that I felt. I don’t want them to feel like they won’t amount to anything because let me tell you it is not a nice feeling. I started this blog in an effort to help raise awareness of this rare syndrome but I feel like I need to do better so that I can raise awareness on a global scale. I am actually looking to become involved with an organization that I love so much that shows the beauty of being different and it at the same time raises awareness of different conditions. More information about that when it all gets sorted out. I’m emailing back and forth with someone about it so I hope that it comes to fruition! We all have a chance to make the world a better place for everyone and I completely feel like my calling is to raise awareness of disabilities. I’m not going to let my experiences in life be for nothing if I can use them to help future generations and our generation that are living with Moebius. 

If you haven’t already please sign the guestbook!! I so want feedback on my blog and what people think of it, if I am getting awareness out there or not. If you have any suggestions, questions or advice please let me know! 

Thanks for reading yet another blog from me and letting me into your lives in my quest to raise awareness of Moebius Syndrome! 

My little Snapple.

There’s no better pet than a horse. Sure they’re too big to live in a house but they are the gentlest souls. They let you hug their neck and cry into their manes. They have the kindest eyes and the biggest hearts. I love my pony.

Relating this post to Moebius.. I’ve had Snapple for about 10 years. When I was in school and I felt alone or excluded or ridiculed, I always had her to come home to. I would take her on walks around our yard or brush her for hours. She let me talk to her. She didn’t respond obviously but I know she listened.

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It’s time for change, but change is often difficult.

I haven’t blogged for a while, I know. My last entry was a pathetic excuse for a blog. There’s not a lot of new things going on but I have had some thoughts. I find that one of the best ways to sort out my thoughts is by blogging. And I often get some pretty good advice from my dear blog readers!

So there’s been some changes in my life over the past few months. I know I’ve blogged about them before, but now they’re getting closer. I’m back at work now after being off for my gallbladder issue for a few months. It’s not as bad as I thought it would be. The job is not what I aspire to do for the rest of my life but it’s okay for now. I’m not working full time which also helps. I just keep telling myself that it’s money in the bank. That’s my mantra while at work. It somewhat helps me get through the day. I guess it helps when you like the people that you work with which I do. They’re really nice people.

Another change that is getting closer is college. That will be a huge change. Maybe the biggest change that I have ever experienced. I haven’t really thought about it because it’s a few months away but time is flying by as it usually does. I want to be excited but I think I am more apprehensive than anything. It will be a really different thing for me. Living with someone new, going to classes with new people, waking up in a bed that’s not my own in a place that isn’t my own. Being surrounded by strangers. It’s going to be an intense change but I’m hoping that it will be a good change. I’m hoping that I will make a lot of new friends and have a lot of fun but also have success in my classes and get good grades like the geek that I am. I have to do well in school because if I don’t I know I will feel like a complete failure. My sisters both graduated their programs with top grades. The future is so unclear to me. Will I be able to get a job in the journalism field? Will having Moebius hold me back either consciously or subconsciously? Or will I not get any chances at all because of it? I wish I knew these answers. But alas, I don’t. So I know that I need to take life one day at a time and not worry too much about the future because worrying will not change anything. Things will work out as they’re supposed to, this I am sure of.

One more thing that I need to change in very short order is something that I know I have blogged about before but I am putting it out there again in an effort to help people further understand what we with Moebius deal with daily. I need to become more outgoing. How do I possibly do that, though? I’ve never been outgoing, ever. Having Moebius obviously I look a bit different but that’s not what holds me back. It’s the speech thing. My speech isn’t totally clear because half of my tongue is paralysed. This is definitely what stops me from being outgoing. I don’t really socialize with people that I don’t know unless they initiate the conversation. I can’t just walk up to people and start chatting to them. I think more than anything it is the fear of not being understand and that moment of awkward silence when you know that someone has not understood what you said that I have experienced one too many times in my life. It’s awful. It just makes you want to run and run until you are on opposite sides of the earth from that person. Other people with Moebius that I keep in contact with, it doesn’t seem to bother as much as I. Some of my Moebius friends are in very social jobs such as teaching and working for their city. They talk for a living. I couldn’t even imagine doing that. I try to avoid having to talk to people at work. I try to avoid answering the phone. It’s something that needs to change. A friend mentioned cognitive behavioural therapy. I’m very interested in trying it. Anything that has the potential to help, I am all for. Does anyone have any experiences with doing this? Please let me know! I would love to know what it’s like and if it has helped you. Right now, anything that might help me, I am willing to try. Indulge me for a second here. There is construction going on at our house right now as I have mentioned in earlier blogs. One of the guys who has worked here a lot I have gotten to know and I chat with him when he’s here working. He’s gorgeous but I know he’s married so obviously he’s off limits. The guy that works with him though, I don’t know if he has a girlfriend or not. He’s definitely not married. He’s oddly attractive and I seriously just want to be able to chat to him and become friends-ish or whatever. Can’t do it. I actually have not spoken to him really at all. I’ll walk by him and it’s super awkward. It’s awkward for me at least. I know people will say just strike up a conversation, ask how his day’s going or whatever. They don’t get it. I like, physically can’t do it. I can’t. I don’t know how to explain it other than that but I can not work up the courage to do it. And not even just for him but for anyone. It’s so awkward because I want to say something but I just can’t seem to be able to do it. This will get me nowhere in life, I know that much. But how do I change my ways? Maybe cognitive behavioural therapy would help? At this point I am really willing to try anything so if you’ve got any ideas please comment and let me know. Please, please do!

Well I think that’s it for tonight. I have to go to bed because I work really early in the morning. Oh joy.

Love!

Time flies.

Wow, I realize it has been weeks since my last blog! There’s not a ton new in my life but I thought I’d bring everyone up to date!

I have started work again. I can’t remember if I went into detail about how much I was dreading it but it’s not so bad after all. It’s not full time, just 28 hours a week. It’s not too bad. The job definitely won’t be a career but it is something for now until I start school in the fall.

There’s a lot of construction going on at my house right now so it’s not really that fun. Dry walling is being done right now and the house was a freaking mess. Good thing that two of the construction guys came today and cleaned up!

I was in California for a week before I started work again. Man, it was so nice to relax in the sun. We went to Disneyland for a day and that was an amazing day. I love Disney. The weather is finally warming up here.. Not California weather but it’s getting nicer.

Not much in the way of Moebius news. Just the same ol’ same ol’. I don’t like talking to customers at work because I feel like they won’t understand what I am saying. Mostly is has gone okay but there are a few times I have just gotten the blank stare that I’m so used to. The thing is, instead of feeling so held back I now feel like I can accomplish a lot more if I want to. If I want a job, I can go for it. I used to assume that I’d never get a job, I’d never go anywhere in life but I am starting to see that that’s not true. I’ve been driving to work also and it’s such a sense of accomplishment and independence knowing that I can get to work on my own without relying on someone to drive me.

Anyway, that’s about it for now. I will try to blog more often!

Know in your heart all is possible! That’s on of my favourite affirmations.