Hey blog friends.
I am going to preface this by throwing a warning out there that this may be one long post. I will try to make it short and as non- redundant as possible though.
So, I had a job interview last week at the college that I am attending. Now, I’m not going to lump us all together but I think for those of us with Moebius any kind of interview, especially for a job is stressful. I’m not going to speculate what others may feel but speaking personally it is awkward. I feel like they’re wondering what is wrong with me, etc. On my resume I have that I have been on the news and developed a brochure on Moebius so that breaks the ice somewhat. At this particular interview, I actually felt a little more relaxed because the people that were interviewing me were super nice. They nodded when I spoke so I felt like they were understanding what I was saying. I know it sounds weird but we rely on seeing other people’s cues to gauge whether they know what we are saying or not. I’ve learned how to do this over the span of my 22 years. Then, my blog came up and the lady interviewing me said that she had never heard of Moebius before she started reading my blog. This didn’t faze me at all; most everyone I meet for the first time have not heard of Moebius. Even a lot of doctors have never heard of it, much less seen someone with it. So when she said she hadn’t heard of it, it didn’t really bother me. I actually didn’t even think twice about it, I just said “no worries, that’s a common reaction” like I always do.
But now I’m thinking: what if we could change that? What if we could live in a world where Moebius Syndrome was in the spotlight as much as cancer? Not trying to take the light away from cancer and I am definitely not comparing the two but everyone knows someone affected by cancer. That’s not a good thing at all, but people know what it is. I hope people know what I mean here, that might have been a really bad analogy. I just lost my grandpa to cancer so I know what a bastard of a disease it is and how much we need a cure. I could do an entire blog post on how much I hate cancer. It infuriates me.
Back to the point, though. What I am saying is that we need so much more light shed on Moebius. I want a world where we didn’t get weird stares or comments from doctors or nurses like “so what exactly is wrong with you? What causes you to talk that way?” I really do try to strive for that in my every day life. I am doing everything I can to raise awareness but there has to be more that I can do. There has to be things that I can do that will reach people on a much larger scale. I am at a wall though and I don’t know what more to do or where to turn for help in doing this. What I am doing now is not enough, not to me. I know I am reaching people through my blog and educating that way but I want to reach so many more people. I want everyone to know what Moebius Syndrome is, but mostly I want them to know that we are no different from anyone else, we just look and sound a little different. This is the most important point to me. I know that the majority of people I meet think that I am mentally disabled because of how I look or sound. This is hardly the case, not only for me but for all of my friends with Moebius. There are very intelligent Moebians out there. One of my good friends with Moebius is even a professor! I feel like people tend to write us off a lot of the time as not being as able as “normal” people. I am tired of this. I am not doing this just to benefit myself, not at all. I want to do this to benefit everyone with Moebius but especially the next generation of Moebians. I don’t want them to have to deal with the things that I have dealt with or see the things that I have seen. Its my life’s top ambition to create a worldwide campaign to raise some much needed awareness. I want all doctors to have information and education so that they don’t have to ask patients awkward questions, like essentially “what is wrong with you?”. There HAS to be a way to do this. I will need some help but I will make it happen. I just want a better life for everyone. I know that life is what you make of it but a little awareness can go a long way.
I am posing this question: What are some surefire ways to raise awareness on a large scale? i’ve been interviewed on some local news stations and had an interview in a small local paper. But there has to be more that I can do. I am just out of ideas and I KNOW that you blog readers have some amazing ideas so please please do comment and let me know!
I am on a mission in this life to raise awareness and I won’t top fighting for it!