Maggie Russell

moebius syndromeMoebius Syndrome was something I knew very little about until the age of the Internet. Being able to connect with people from all over the U.S. and throughout the world has been tremendously enlightening. There was a time, however, that I felt alone… I was about seven, after coming home particularly upset because of some bullying at school, my mother explained what little she knew about Moebius. I remember sitting on the stairs with her and listening to her explanation. It wasn’t too detailed, she just said that half of my face was paralyzed. I was certainly different, but I didn’t have much to connect with.

At some time in childhood, the nerves on the non-paralyzed side of face grew to a point that they were able to compensate for the lack of movement on the paralyzed side. I think it’s evident that I have paralysis but it’s not glaringly obvious. I often feel as if I exist in this strange in-between where Moebius is concerned, half of my face works perfectly fine and the other half works well enough. I can’t whistle, big deal. And my face is asymmetrical, especially when I talk, big deal. (Sarcasm here). But in spite of these seemingly insignificant things, there’s an outdated pressure in this world, an expectation that women should be whatever they want but it’s best if they’re also pretty. There have been so many instances in my life where I have felt anything but pretty, I cannot count. I’m convinced that the overarching lesson here is self acceptance, and I’m really working on it.

Because of Moebius, my expressions are limited. In school, I was told that I had to work extra hard to prove my intelligence. Before finding other people with Moebius, I thought that perhaps I was simply destined to not be that smart or not be that talented. The Moebius community has proven me wrong and it has challenged me to aspire to more. Through online connections, I’ve learned that Moebius has absolutely nothing to do with what is within. We are a talented, intelligent, kind, and lovely bunch and seeing this has encouraged me to promote my own special gifts. I love how different each and every one of us is. I myself work full time as a portrait artist. I’ve come to believe that portraiture is a conduit for the emotions I cannot fully express with my eyes and mouth. It’s been a life saving gift and I hope to have the privilege of earning a living with it until I’m old and gray.