I went into the hospital last week with absolutely unbearable pain (on a scale of 1-10 it was a 50). Turns out I have gallstones, and will be getting my gallbladder removed in the next month or so.
Anyway, I had the nicest ER doctor ever. He talked to me for a while and he was just super nice. He was pretty soft spoken. He talked to me for a while and then went to talk to my dad about what they were going to do. He talked to him for about 10-20 minutes. He came back and we were talking and he goes “I think I’ve heard of Moebius Syndrome but I’ve never seen anyone with it. You must be very special”. Then he went on and was like “I know that sometimes you must wish you weren’t though. I know you’ve had a lot of surgeries and inconveniences but don’t be afraid to speak up and tell us if the pain still remains”. I don’t know if I’ve ever had a doctor that was like that. He was amazing. I was actually really impressed.
But I don’t actually think of myself as special. Different.. maybe. But I’m no more special than anyone else, I don’t think. Special would mean that I’m somehow better than others. I don’t see that. I know that I have this rare neurological condition so maybe I’m diverse. That’s the word. But all of this doesn’t matter a huge amount.. I just want to spread awareness of Moebius so that we eventually won’t have to explain it to doctors. They’ll just know. And then, maybe, we won’t be seen as special or different.
My main goal for this blog is first and foremost to raise awareness of a rare neurological condition. That’s the most important thing to me. If we, as the Moebius Syndrome community, can get the word out there about what it is, we can educate people. This is important so that there will be no need to stare, point, or snicker at someone who looks different. They will be able to say, oh that person has Moebius. There won’t be any questions or concerns about our intellect level. I just want the awareness out there. I want to do something to change how the world sees us. I want to raise awareness.
Also, I want to stay connected with my Moebius family and I feel like a blog is a good place to start.
Last but not least (and it’s kind of the same as my first point) I want my friends without Moebius to be able to know about the struggles and such that we face. I want them to be part of my world and know what this is all about.
This is why I am doing this blog. I hope to gain more readers so I can spread the awareness of Moebius. Please help me in my quest by sharing this blog with your friends! I promise to try and keep it interesting!
Sometimes it really is the smallest things in life that matter. For the past 4 days, I had been in the worst pain ever. I was taking one of the strongest painkillers out there, which can’t be good for my body. I still had the pain this morning but then this afternoon, I was watching T.V lying down and the pain just stopped. I can’t tell you what the relief was like. On a scale of 1-10 the pain was a 12. I always thought it was so cliche when people said that but I’ve never known it to be more true. Hopefully going back to work tomorrow, and I’m actually looking forward to it because of one simple reason: I can. Hopefully the pain stays away but I know eventually, my gallbladder will have to come out. It sucks but that is reality. And, as I went into work today to talk to my boss about probably being back tomorrow, one of my coworkers asked how I was, my boss said she hoped I was better, and one of my friends (also coworker) was having her lunch as I was leaving so I talked to her for a minute and she was glad that I was able to come back. I’m very happy that I work with such great people. It makes me want to go back to work.
I feel like having Moebius maybe prepared me for this 4 days of hell. I mean, I’ve been through many surgeries, a lot of pain both physical and mental. It has certainly prepared me for the surgery that I know looms ahead somewhere in the future.
As Dumbledore said in Harry Potter “Happiness can be found even in the darkest of times, when one only remembers to turn on the light.” This is how life goes. Finding joy in the little things. Such as being relatively pain free.
If you’ve stumbled upon my blog randomly and have no idea what Moebius Syndrome is, here is some info. Basically, it’s a rare nerurological condition that causes the cranial nerves to be underdeveloped or malformed causing facial paralysis among many other things.
The main MSF website is
Knowledge is power!
So, I read a post in our Moebius group on Facebook about a teenager with Moebius worried that she won’t ever find someone to marry, someone who loves her for her. Well, I thought this is an interesting topic because I have been there. Been. There. And still kind of am. I mean, I’ve thought about this an astronomical number of times throughout my young adult years. I still do, actually. Right now I guess I just kind of picture my life and being single because I have the same thoughts. Will I find a guy who can look past the Moebius, the speech issue, the expressionless face? I know that many Moebians are in committed relationships, married, etc. I feel like maybe it will happen and it will certainly only happen when the time is right. Maybe I have a negative attitude but I have kind of just accepted being on my own. Do I want to get married, maybe have kids? Of course I do. But will I find someone? I hope.
BUT in saying this, don’t exemplify me. It doesn’t have to be my future or yours. We just need to change our mindset. Real life is hugely different from high school. Adults are, for the most part, understanding and more mature. Mostly they don’t really care about whats on your outside. If you really get to know someone, that’s when real relationships are formed. And don’t go looking for love because more often than not it will come when you’re least expecting it. There is someone out there who won’t care about what makes us different. They’ll just like you for you. You’ll get along, you’ll make jokes, you’ll laugh together. I really hope that everything in life works out for each and every one of my Moebius family because goodness knows that we deserve it!