I don’t know where to begin, middle, or end with this. I write for hours every day about all sorts of things — the Kardashians, diversity in the entertainment industry, Drake’s seemingly endless rap beefs — and yet, every last word I write about living with a facial paralysis called Moebius Syndrome, I struggle with. I’m having a hard time writing and that’s a pretty divisive change for me. I have no problem talking and writing about myself on the usual. In fact, I ADORE it (can’t be helped, I’m a Leo). Writing is how I communicate best.
But there’s a reason why writing has been the way I express myself. And that reason, friends, has to do with a failure to communicate with the tool most humans use. That reason is why the anxiety in my brain surges with a Greek chorus of “you’re not worth it you’re not worth it you’re not worth it.” But I digress. I’ve adapted to explain what I’m thinking and feeling by way of the written word. I strive to make others laugh — which is always my greatest goal. To fit in.
I was born with a rare congenital facial paralysis called Moebius Syndrome, which according to rarediseases.org, affects about 1 case per 50,000 live births in the United States. Whenever I dabble in stand-up, I say in my set,
You don’t need to know the science goobbledigook and neither do I. It doesn’t really matter that much to me. Basically, I can’t close my eyes all the way (even when I sleep), can’t move my lips to show my teeth (ever), and the left side of my face is mostly immobile. For me, the most depressing inability is that my eyebrows don’t move — I still have dreams at night where I’m looking in a mirror, just raising my eyebrows over, arching left and then right, and over again. I also have a quite frustrating tradition of dribbling water out of my mouth and choking on water. Eating meals in public is a struggle that usually ends with a lot of crumbs and, at the very least, a liquid mustache of some sort.
Sometimes, I think of this face as a mask that’s hiding what I’m actually thinking and feeling. My face has never really been able to express what’s happening on the inside, so I’ve always felt like I don’t really live in it. My body feels like it belongs to me, but sometimes I look at my cheeks and eyes in the mirror, and I don’t recognize them as mine. As you can imagine, being unable to express this complex sentiment through writing and also being unable to explain it through my own face is some kind of horror.
When I was still dwelling on the writing of this essay, I kept beginning by “boo-hooing” about the not-small amount of bullying I’ve received in light of my paralysis.
Yet, when I attended the 2013 Moebius Syndrome Conference in Philadelphia, many of my fellow Moebians couldn’t even tell I was a part of the gang. People with the disability are marked by unblinking eyes, wide open mouths, blank faces. There’s also other disorders associated with Moebius like Poland syndrome, which is characterized by webbing of the fingers, absence or underdevelopment of the fingers or hands, and underdevelopment of the chest muscles and breast. Meanwhile, Autism is linked to the disorder as well.
I have a lack of symmetry going on and some confusing facial expressions but, overall, nobody can tell I’m any “different” until I open my mouth. I’m one of the lucky ones. I feel guilty about that. And like my voice doesn’t deserve to be heard because of it.
Part of the reason I “pass” is because, when I was four and had just recently gotten a diagnosis, my grandmother stumbled upon some literature about some important work being done at the Hospital for Sick Children of Toronto by Dr. Ronald Zuker. Zuker was working on a “smile surgery” in which he would take a muscle from the thigh and slip it into the part of the face that needed a boost. For me at that young age, the surgery didn’t matter and all I was really concerned about was taking a trip to not-even-that-close-to-Toronto Niagra Falls — though my teddy bear, who ended up getting soaked in the Horseshoe, was not impressed.
I remember feeling so disappointed, and then feeling guilty for feeling disappointed, when Dr. Zuker told me at the follow-up that what I had was what I was stuck with. Even at a young age, I knew that I was given a great opportunity and should be grateful, but I was too distraught about not having a smile like everybody else.
I’ve got a mischievous little side grin. I pass. But I wanted to do more than pass. I wanted to completely fit in.
I started to realize the virtue of completely fitting in around age 7 while spending part of my summer at a Society of Friends day camp. The irony is not lost on me that this camp — located in a school founded by people who wanted so hard to spread love and equality — was my first instance of real bullying. I remember sitting under the slide of the play set (where the cool girls hung out) and bragging about my “Moebius symptom” to another little girl. I thought it was cool. It set me apart. But she immediately turned all the other girls on me, worried I was contagious. I took the whole thing to mean I should never tell anyone ever again, never be open about it.
Which I wasn’t. For the most part. Once, I was convinced to write an essay and read about the whole thing for an elementary school talent show. I’m sure it went well, but all I can think about when I remember it is how I ended the whole thing with a question like the elementary school essay writer I was, “After all, Jesus Christ is different and where would we be without him?” Catholic elementary school Jordana wasn’t quite woke just yet, but she did know how to perform a mean public speaking engagement. Post-Catholic elementary school Jordana could take a lesson from her younger self in writing about Moebius Syndrome without dry-heaving.
But other than that, except for a few choice friends, boyfriends, and people who have just called me out altogether, I’ve kept my Moebius Syndrome under wraps. And now I’m writing this, defying the religion of denial practiced by seven-year-old, 13-year-old, 19-year-old Jordana. Like all disbandment of an ideology, this one comes with a little bloodshed. But like, metaphorically, and not really blood, just a few tears and one or two harsh words directed at anyone who tried to give me advice. Maybe I should end this essay with a question, too. People love questions.
It’s hard to be yourself.
It helps to remember that everybody’s got some strange body thing going on. Many of my friends have eczema, my baby niece had a crooked ear, an ex-boyfriend had dramatic scarring on his neck from a childhood surgery that saved his life. He rolled over one night and asked me, “Isn’t it kind of funny that we’re like, bionic humans?” It was a healthy reminder that there isn’t anything wrong with me, but there is something right with me. I am a model of modern surgery. I am just your average girl like any other who has to get braces or put a weird cream on her feet at night.
I’m not at peace with myself. I am not sure I ever will be. There’s always going to be a part of me (that’s right, the ”you’re not worth it” cheerleader, you’re getting it!) that thinks “you could have actually gotten into acting if your face wasn’t jacked” or “you would be good enough for that boy who won’t date you if he didn’t see you as a disabled person.” But like every other human with a personal characteristic they don’t like, I’ve got to keep on. It’s pretty much my only option.
I look forward to the day when I’m a free-thinking, sassy older lady with Moebius Syndrome — picture a Lily Tomlin and Maggie Smith hybrid. I’m hopeful that by then I’ll stop caring so much about what other people think of my little difference. On a related note, by that point, I plan to take the mask metaphor literally and actually start wearing one that only covers the mobile side of my face as some sort of statement. I’m hopeful that, by that time, I’ll be an eccentric and famous writer, so if I wear a mask it will be considered standard behavior. People will say, “Oh that’s just Jordana, she’s making a statement about something or other. She’s the Virginia Woolf of our time so she’s allowed a few eccentricities.”
But alas, I’m not there yet and I barely even know how to write an essay about Moebius Syndrome, let alone straight-up rock a mask in defiance. So, like my first attempt at coming clean at the St. Andrew talent show with a personal essay, and because I’m still torn on the whole beginning/middle/end part of this thing, I’m going to end this piece with another essay-writing cliché.
This time, I’ll leave you with a modified quote from our dear ole pal Willy Shakespeare in a little play called Twelfth Night,
Being weird, an outsider, someone who doesn’t fit in is something I was born into — but it was also thrust upon me. It is my birthright.
Though it’s tough for me to write about it, this has been great practice, and I plan to use my writing to sing that birthright from the mountaintops — after I can finally stop hyperventilating in the bathroom. We are all lovable weirdos. And we all deserve recognition and love for being lovable weirdos. I’ll use my birthright ’til the day I die to make sure all the lovable weirdos with all the quirks understand that their wants and needs are valid. Even mine.