Russell

Moebius syndrome is an extremely rare disorder present at birth where the 6th and 7th cranial nerves have not developed properly. People with moebius are unable to form facial expressions or move their eyes from side to side. Some sufferers are also born with clubbed feet and/or hands. I was lucky in that I only suffer from the facial paralysis.


As most moebians are, I was teased a lot at school, but my parents did a great job of helping me build my self confidence and teaching me coping techniques. Randomly changing the subject was my favourite one. If people were being mean I would start talking about something unrelated like ‘have you ever wondered how many holes there are in that fence over there?’ This was great as it confused the sh*t out of them and they left me alone 🙂

I was lucky in that I was also born with a natural musical ability, so I was always involved in music-based activities at school so I had lots of things to do to keep busy and it gained me a lot of respect from my peers.

My school and sixth form years helped to give me a lot of self-confidence. I met a lot of very cool people, and was able to just ignore the sad individuals that insisted on being mean to me. I felt sorry for them actually, that they felt they had to make fun of people less fortunate than themselves to feel good. Their comments still hurt but I developed the ability to dismiss them as insignificant low-lifes.

I think my somewhat difficult childhood with Moebius has helped me to be a better person. I work hard at everything I do and get a great sense of satisfaction and pride of the things I have achieved.

I am really enjoying adult life at the moment. In recent years I have greatly expanded my social circle thanks to a brilliant community of like-minded people that accept me for who I am. So much so that I rarely think about my disability.

I still get the occasional comments from people in the street; ‘cheer up it might never happen’ etc. It does upset me sometimes that I will never be able to express my state of mind by smiling, something that is so natural to the rest of society. I do also struggle socially sometimes as I am slightly autistic and don’t find social interactions come as naturally as they seem to to everyone else.

So I am still not quite where I want to be in life but feel I am not far away. I have a great skillset and job, great friends and a great family. I have plenty of self confidence and drive, and I have recently got back into music again which has been fantastic and is helping to increase my confidence and meet lots more cool people.

Really looking forward to seeing what the next few years will bring 🙂

Russ

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