Moebius Voices

Q. How are you affected by Moebius Syndrome?

A. I have the classic bilaterial facial paralysis, so I have to rely on Snapchat filters to do all my funny faces for me, and both of my arms end at the elbow. I have a nub on my left arm, which is essentially just a little “button” of skin and fat that looks kind of like a tiny cinnamon bun, and on the right I have what people who know me call “Elephant,” which is essentially two fingers that developed as one, with knuckles and a double-nail. It sounds weirder than it is when you see it.

Q. When were you diagnosed? What were your parents told?

A. I think I was diagnosed about a month after I was born—that’s how long I was at Johns Hopkins in Baltimore, MD. We were very lucky that the nurses there knew how to help me eat and had cared for other children with disabilities. It was the early ‘80s, and sometimes I think it was remarkable that I got a diagnosis at all. Doctors of course said many of the thing's doctors seem to say to new parents of children with disabilities; “she won’t do this and that,” “we don’t know if she’ll talk,” the whole doom and gloom spiel. But my parents didn’t accept that, and they kept pushing for me to live as normally as possible.

Q. What was childhood like for you as a child with a facial difference?

A. Life was of course not easy, but I was very lucky that my family loved me and didn’t treat me differently, and we had a solid group of people around us that loved us all. Elementary school was fun, but all the money in the world couldn’t persuade me to go back to middle school. It’s so tough being so different in your early teens, and luckily, with therapy and a lot of grace from the people around me, I made it through. I made some friends in eighth grade who were very kind to me, and I made friends in high school who I’m still friends with today.

Q. How did you navigate adolescence and young adulthood?

A.I feel like I actually didn’t ‘navigate’ things very well in my teens. I didn’t know how to talk about my feelings, and I spent a lot of time feeling embarrassed about myself. I didn’t do as well as I could have in school. My parents encouraged me to stand up in front of the kids in my classes and talk about my disability. Even though at the time I really didn’t like doing that, I realize now that it was the best way to let them get to know me. As I got into high school and found ways to get into things I enjoyed, like graphic arts and dance, I connected with people with common interests and got to prove to myself and others that I was more than my weird outer shell. I made some amazing friends when I first started college and grew and changed a bit more. Although that initial attempt wasn’t successful and I didn’t end up finishing college and entering the working world until I was 28, I kept learning; I went to recording engineering school, stayed connected with my local community college, tried living on my own for the first time, and worked at the local mall for many years. Some attempts were a success, some not, but I’m so grateful for my family and friends—without them, I wouldn’t have survived the transition at all.

Q. What is lifelike now for you as an adult?

A. I pay my bills and file my taxes on time. That’s what it’s all about, right?

Adulthood is staggeringly complex, and I wouldn’t trade it for anything. I live in an apartment in Washington, DC, I have a job that has the potential to be fascinating on a good day and where I know I make a measurable impact, and I’ve had opportunities to travel and meet wonderful people. I never could have imagined my life today when I was 13. heck, I couldn’t even have imagined it when I was 25!

I do struggle with the way I look here and there, but for the most part, I’m happy with the inner and outer me. Every so often I’ll walk by a group of people laughing that I’ve never met in my life and remember the feeling of being laughed at by people on the street or kids at school. People I meet when out and about in the world can very occasionally make assumptions or be unkind. But the joy of getting older (and further away from childhood trauma, in my opinion) is that you can judge yourself by your own successes and choose each day how you’ll react when the way you’re treated makes you unhappy. I’m not on my game each and every day, but joy and curiosity keep me going when things get tough.

Q. What is it like for you being connected with the Moebius community?

A. I didn’t meet anyone with Moebius until I was about 20 when my mom and I attended our first Moebius conference. It’s an ironic twist of emotion to feel overwhelmed when surrounded by people that look just like you! I didn’t appreciate it fully at the time, but that was life changing. I made a few friends that year and continued going to conferences and meetups on and off for the next thirteen years. My friendships grew, and it’s such a joy to see my mom connecting with parents of children with Moebius.

Us Moebius people have to look for new ways to do a lot of things that people without Moebius don’t have to think about, and it’s so cool to be able to just send another Moebian a message and ask for advice, or to be able to say “Gosh, isn’t being alive hard sometimes?” and have them completely understand what you mean. Our community is strong, and we take care of each other.

Q. How do you celebrate MSAD?

A. I love wearing my purple shirt on 1/24! Although I don’t usually do anything too big, I do usually make a Facebook post and love looking through all of my fellow Moebius friends’ posts and events. I’m dedicated to making this coming MSAD a bigger affair!

Q. What are your hopes for Moebius awareness in the future?

A. I hope that in the future, people will embrace the idea that genetic variation is super cool and not something to be afraid of. Everything with a brain can do something useful, and it’s up to all of humanity to decide that people who are “different” can and should be expected to achieve at the same rate as people who aren’t.

Q. What would you say to parents of a child who has just been diagnosed with Moebius?

A. I’d probably say, “Don’t panic!” and give them my mom’s phone number! LOL

I think a lot about how hard my parents must have advocated for me to be included in things, and how they must have struggled to help me figure out how to operate independently. They probably felt completely lost sometimes, and they didn’t really have the benefit of the Moebius community we have now. But they got connected with occupational and speech therapists when I was very young that helped me learn to do so much on my own. They found the resources and the people that saw beyond only the challenges ahead. They believed I would be able to have a good life, and because they believed, I got the help and love I needed to make it. It feels like so much of life is simply about deciding to believe in the things you care about.

You and your child can do this--find your people and believe in the power of what you can do together!