That awkward silence

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It has to be one of the worst things about having Moebius syndrome; when you’re talking to someone and experience the dreaded awkward silence, the one where you know that the person has not understood what you just said.

I am currently sitting at Starbucks on the university campus, and my intention was to do homework but then this happened so I decided to blog instead. Hashtag priorities.

It’s not a huge deal. I walked up to the cashier/barista, ordered my standard grande non-fat iced white mocha and then it happened. The awkward silence. And then the standard, “I’m sorry, what was that?” So I repeated it, heat rising in my body, knowing that he hadn’t understood and worrying, like I always do, what if he doesn’t understand the next time I say it? He then got closer, “oh an iced mocha?” Close enough. Then, as he’s writing on the cup, I say, that’s a white mocha, right? And he got it.

This time, it wasn’t so bad. He was nice about it and got my order after a couple of tries, and then when I was paying he apologized, which most people don’t do.

I think those with Moebius (and others with speech issues) might be the only ones who truly understand what it is like to not be understood and to endure that awkward silence. It doesn’t sound like a huge deal, I know, but it can be humiliating.

This is actually ironic, but I was going through my Facebook wall this morning and came across a post I made in like, March of 2015. I basically laid out a question to my friends with Moebius and asked if scientists found a way to repair our cranial nerves, for all intents and purposes curing Moebius syndrome, would they want that? Would they take the treatment, even if it was experimental?

Back then, I said I wouldn’t. I’ve never known a life without Moebius, I never have known what it’s like to communicate without barriers. I like who I am, I like the person that I am because of Moebius so I wouldn’t change it. After instances like what just happened at Starbucks, I find myself rethinking that statement. Yes, I believe that Moebius has made me a better, more tolerant and inclusive person but it sure does make life difficult sometimes. If I could make life just a little easier, would I? I don’t know the answer, I guess I will have to wait until the time comes. The facial paralysis isn’t an issue, I can live with it but it would be nice to have clear speech and not worry about being understood. I don’t think it’s something that the average person can fully sympathize with because it’s one of those things that you could never know what it’s like until you have to deal with it.

I’m not ashamed of having Moebius, not in the least but again, it does make life pretty difficult sometimes. I think I have learned to adjust the best way that I know how and I am sure I will continue to learn over my lifetime.

I am curious to know what others think. If you could change/improve your disability, would you?

Let me know via the comments!

Things we can’t control

I find it ironic that yesterday was Moebius syndrome awareness day, and I’m up at 2:45 AM blogging about embarrassing things that happen when you have Moebius.

I woke up about half an hour ago after having yet another night terror. I’ve had them my whole life, as long as I can remember. It’s like a nightmare but worse. I don’t just scream in my sleep, I also am actually screaming out loud. I’ve woken my family up more times than I can count over the past 25 years because of it. Now that I’m living in residence at university, it’s embarrassing when it happens here! I wake up and know I’ve been screaming audibly (loudly) and immediately start to panic and wonder who heard, and what people around me are thinking. Embarrassing. I can’t control it and I hate when it happens. 

I know that I shouldn’t care what people think and normally I don’t, but this is an exception. 

Moebius syndrome awareness is important because of situations like this. If people understand why these kinds of things happen to me, they will (hopefully) be more tolerant and accepting.

I’m super embarrassed right now and can’t help but wonder who heard what happened and what they are thinking. Having Moebius isn’t a curse, it’s actually somewhat of a blessing to me (see my past blog) but the manifestations of Moebius are sometimes hard to deal with. 

But I deal with them, and every adversity I face makes me more resilient.

There are just some things that I can’t control so I have to let them go. 

Moebius Syndrome Awareness Day 2016!

Hey everyone! So, today, January 24 is Moebius Syndrome Awareness Day! I have been campaigning for a few weeks now, trying to rally news stations and such to cover the day to raise awareness and it ended up to be … Continue reading