This too shall pass.

I’m just going to preface this blog post by saying that I do consider myself to be a strong person most of time time. Emotionally strong, not physically strong. Although, I can carry like 5 bags of groceries at a time but that’s basically because I’m too lazy to make more than one trip. Anyway, I don’t let my emotions get the best of me most times. And I don’t usually reach out to people to let them know that I am having problems. Today was not one of my finest days. I was supposed to go to a concert tonight with one of my best friends. She won tickets a few days ago and we were all excited and such. What I am about to say, I haven’t told anyone except her, so I can’t believe that I am blogging about it to the whole of the Internet. However, when I made this blog I vowed to be honest and document everything that goes along with having Moebius Syndrome so I feel compelled to get this out there in hopes that people will understand what it’s like to have to go through these things. Also, it just happens to be Rare Disease Day so we are trying to raise awareness of rare diseases such as Moebius Syndrome and the struggles that those of us living with rare diseases go through. So my friend and I were supposed to go to this concert tonight. Most people would be like oh that sounds so fun, I’d be so excited, etc. Well, I was kind of excited and I did want to go. However, having Moebius, I have really sensitive hearing. My family and I used to go to fireworks and I would absolutely lose my mind because it was so loud for me and I can’t handle loud noises. It’s hard for me because I love concerts and rock bands but the intensely loud music is too much for me to handle. It’s not just concerts though, it’s anything loud. It’s fireworks, it’s when cars accelerate obnoxiously loud, even when babies are crying loudly. I just can’t handle loud noises. So anyway, I’ve been having anxiety about this concert for the past day or so because I really want to go but I know that I can’t handle loud music very well. When I go to Nickelback concerts, I spend half the concert covering my ears. How lame does that make me sound? Extremely. Can’t help it though, it just comes along with having Moebius. The hardest part is not even having these issues. The hardest part is telling people. I hate telling people about my weaknesses or about things that I can’t do. It’s embarrassing for me and I want people to think that I’m fine, that nothing ever bothers me. Unfortunately it’s not always that way. I do have problems doing some things (like calling people on the phone, for instance. I know for a fact that is a direct result of having Moebius. And as absurd as it may be, I can’t help it nor can I get over it) but I can never tell people. I don’t want people to know these things. I keep them to myself because it’s embarrassing and I don’t want to draw more attention to myself and to the fact that I have Moebius. Moebius is something that makes me so different so I feel the need to pretend that I am just the same as everyone else and don’t have things that make me different. When people see me, I know what they think for the most part. They think that I am mentally incapable of doing things or they feel sorry for me. I know because people have actually said that to my face before. Sad but true. The way that people act around people like me is sad. It’s why I am on a mission to raise awareness of disabilities so that people will know that we are just as capable as they are. Yes there are things that make us different but mostly we are the same in that we want the sane things as others. We want to succeed, to live our dreams, to love and be loved. I know that we all have a mission on this Earth and I KNOW that mine is to raise awareness of disabilities and to be an advocate. You really don’t know what it’s like to live with something like Moebius Syndrome until you have. I can tell you all about my struggles and the issues that I have but I know in my heart that no one will ever truly get it, other than my Moebius friends. I am not in any way trying to make it sound like I have the hardest struggles. No, not at all. I know that there are people who have much, much harder times on their hands. I’m also not trying to complain, not in any way. My aim here is to raise awareness of what we go through on a daily basis. I also want people to know that just because we do have these struggles, it doesn’t make us any less of people. It doesn’t mean that we are incapable of living life to the fullest. It just means that we have different triumphs and tribulations than others.

Anyway, I am on a mission to raise awareness of all of this that goes with having a disability and also to raise awareness of disabilities themselves. I think that by doing this, the world will slowly begin to become a more tolerant place.

Live the life that you dream!


3 thoughts on “This too shall pass.

  1. Not that I’ve been to many rock concerts, I haven’t, but I totally get what you mean. I’ve never been fond of bars, pubs, clubs or movie theatres for the same reason. Sometimes, even coffee shops have their music too loud for me (you can imagine the looks I get when I ask them to turn it down!). However, I have found an awesome pair of ear defenders that allow me to hear without being traumatised by all the noise….actually two different kinds. Have you ever thought of using anything like that? Especially with your long hair, I don’t think anyone would even notice them on you. is one place to find them…I can’t find the other website for my other pair. You love your Nickelback. Wouldn’t it be great to rock out with your hands in the air instead of on your ears? lol.

    Love ya. Love your blog. It’s cool to be Rare.

  2. So for the concert thing: have you ever tried ear plugs or anything like that..Or something that will lessen the sound but still allow you to hear it.
    Loud noises use to bother me too, especially fireworks…Crying babies still bother me but I think that has to do more with the fact that they’re obnoxious rather than the actual loudness of it.

  3. i was going to suggest you get a kick ass pair of ear plugs as well. I know that there are kinds that filter out the highs with music (the particularly damaging frequencies), and i have YET to go to a concert without some kind of plugs in my ears, and i don’t have Moebius. i just want to protect my hearing, and the concerts SOUND BETTER with some of that filtered out.

    i love your blog!

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