New ideas.

So tonight, I was talking to someone younger than me who also has Moebius.

He had sent me a friend request, and I totally forgot about it until tonight and his mom asked if I would be willing to add him so he could talk to me about having Moebius and such. I, of course, am willing to talk to anyone with Moebius and give them advice and tell them my life experiences in hopes of being able to help them.

I definitely love the feeling of being able to help those younger than me navigate through some of the challenges that they have, because I had the same challenges growing up.

So this actually gave me an idea. I was thinking of maybe doing some kind of social work. Not a psychologist or anything like that but someone who talks to those with disabilities to help them through the challenges that they are facing. My speech does create a barrier sometimes, and this is an issue but I think I can still find a way to communicate. People with disabilities go through things that “average” people just can’t completely understand. I have gone through these things, I have experienced things that no one else I know has. If I can use these experiences to help people, then they would be worth it. I want help people navigate through their lives with disabilities and I really am hoping to make this happen. I just can’t let things, like my speech, hold me back.

If anyone has any ideas on how I could help, please feel free to comment here. Maybe I could set up an online thing where people with disabilities can go to ask questions, etc. I know that some sites like that exist but the difference is that I think having a disability myself, I definitely have insight that people without disabilities don’t have.


How to raise more awareness?

So, by now most of you probably know that I believe that it is my mission in life to raise awareness of Moebius syndrome. In case this is the first blog of mine that you’re reading, (welcome!) Moebius syndrome is an extremely rare neurological condition. No one knows for sure how many people it affect, but it is thought to have a prevalence of about 1 in 500, 000- 1, 000, 000. Moebius is an underdevelopment or malformation of some of the 12 cranial nerves and causes facial paralysis, limb abnormalities, speech problems, feeding problems, etc. What people sometimes don’t understand is that Moebius doesn’t affect intelligence. Just because we look or sound different doesn’t mean that we have any cognitive issues.

My mission is to raise awareness of Moebius so that people don’t have misconceptions about us. I want people to know that we are just like every other person, we just look a little different or sound a little different. I’ve had so many negative encounters over the past 23 years, I don’t want future generations to have to go through that. That is why I want to raise awareness right now.

i have been sharing my blog on Facebook and Tweeting at anyone who will listen but there has to be a better way to get the word out there. I want to go national and global with this, that would be my goal. I know that it will be difficult but I am willing to put in the time and effort. Whatever it takes, I will do it if it means getting information out there about Moebius and educating people.

Please let me know your thoughts and ideas on better ways to raise awareness. Any comments will be so greatly appreciated! Please, I am desperate for ideas!!

Thank you! Just trying to take what I know and make the world a better, more tolerant place!

Job hunting and Moebius

I am officially done my first year of college! It seems so surreal. It does not feel like it has been 8 months! It was an amazing year of growing, changing and overcoming obstacles. I met so many amazingly great people and did things that I didn’t know I could do.

Now that I am done school for the summer, it is onto the job hunt. I know that everyone has trouble in some form or fashion while job hunting but I think those of us with Moebius have an added obstacle. That obstacle is having a noticeable difference, whether it is how we look (facial paralysis) or how we sound (speech problems due to malformed tongues, etc).

I have been searching for something within the journalism field but those kinds of jobs are hard to find especially for a student with no official accreditation. I have now moved on to searching for jobs unrelated to journalism. Anything will do for the summer. I would totally take an administrative or secretary job but these require talking on the phone, talking to clients, etc. I can be hard to understand because of having Moebius so I feel that those kinds of jobs would not work for me. Even for retail type jobs, one of the job requirements that is always present is “excellent communication skills”. I can talk and converse with people but I can’t deny that I can be hard to understand, especially to people that don’t know me. I feel like this is a problem that all of us with Moebius face. Please correct me if I am wrong, as I don’t want to put words in anyones mouths.

It is a very difficult situation. I have to find a job for the summer. My family is pressuring me to do so and I need to make some money before school starts again in September. I know that a lot of people don’t understand how difficult this is for me, so I ask you to do this: Imagine for a moment that you have a physical different. You look different than other “normal” people. This causes people to stare sometimes and ask awkward questions. You cannot blink or show facial expression. You can’t even smile. Your speech is difficult to understand and this, combined with your physical difference makes people wonder sometimes if you have mental impairments also. This is my reality, everyone. It really is. This is my reality and this is the reality of others that have Moebius syndrome.

This is why I feel so strongly about raising awareness of Moebius. I think it is so important to make people see that even though we may look or sound different, we are just as cognitively capable as everyone else, if not more so. I know that I say this in every blog post but raising awareness is my life goal. This is one of the reasons that I am in a journalism program. The written word is the best way to raise awareness, I believe.

I’m not going to combine two blog posts so, stay tuned! There will be another post coming either later today or tomorrow.

I want to leave a legacy in this world and I want that to be improving the lives of others with Moebius. My hopes are that future generations will not have to experience the hardships that I have.