By Jenna Ottow
Sometimes, having a facial difference can be completely unnerving, frustrating, and tragically lonely. I don’t believe anyone who appears physically normal will never really know what this feels like or even understand just how alienating it is. One example of how this manifests itself in real time is by being what I call “almost famous.” In other words, everyone seems to recognize you, even when you do not recognize them.
Unfortunately, for you dear reader, this article isn't about the coming-of-age film from the early 2000’s that stars a young Kate Hudson, about the early days of Rolling Stone magazine. This is about living the life of a person born with a facial difference, of being recognized even when you do not want to, and to be, dare I say, Almost famous, when you least expect it or want it.
I can’t really do anything about this so-called fame because I was born with a facial difference, Apert syndrome. Apert syndrome is a craniofacial condition characterized by fused skull and skeletal bones, hands, and feet. People born with Apert syndrome need to have skull surgeries shortly after birth to allow the brain and head to grow, resulting in differences in the appearance of the head and face.
So now that you know the basics about Apert syndrome, let me explain how this almost fame manifests.
I have a very small role in a very big hospital. I have very little to do with the split-second decisions that medical staff make actions that ripple and change the trajectory of people's lives and worlds. However, in my role here, and in other spheres of my life, everyone always seems to know me, to remember me. We, most often times, have never been formally introduced to my knowledge, but they always know me by my name. Admittedly, I have an infectious optimism, and I can’t help but be funny and nice to everyone – sometimes to a fault. But I’ve come to realize that’s not why they know me. They know me because I look different, because no one else here has a facial difference. I know, I’ve looked! There’s no oversized foreheads, wide set eyes, different hands, or arms that can’t reach above the shoulders.
What a bummer! I thought they found me memorable because of my sparkling wit and work ethic! My appearance, the way I was born, sadly, makes me hard to ignore. The fingers that don’t bend, the ‘flat face’ that doesn’t look quite right.
I was born this way. My birth defect makes me stand out, holds extra stares and comes with an encyclopedic knowledge of medical terms and procedures that I wish I didn’t know, or experience. With a physical difference, I'm remembered. People even tell me so. Friends are in awe when strangers know my name. My family can't believe when I'm recognized at restaurants, the movie theatre, or even random public events when people stop me to say “Hello.” I'm polite when I don't know them, I look for subtle hints to try to place them so I can once again have some power in the midst of this uncomfortable encounter. This tactic helps some, but not always. Sometimes I have to pretend like I remember this stranger’s face which is always awkward because I don’t love lying. Ultimately, I am striving to make this brief meet- and- greet far less intimidating for me, as they are likely oblivious. It’s embarrassing to have to ask their names or to deftly avoid using names altogether. They know me, they’ve gone out of their way to tell me so, and now it might just hurt a little because I don’t know them.
My parents did a phenomenal job when I was younger of making me a part of everything. Mainstreaming kept me in some state of ignorant bliss.. I tied my shoes with everyone else, gushed over the cutest boy toy (I’m looking at you Hanson brothers and JTT!) and fed into the latest fads and trends. I was convinced my eternal optimism and upbeat personality were what made the encounters stick. As well as their intentions were, my parents did me a great disservice. I lived in this bubble and as joyous as it was, it is now completely unsettling. I can’t blame them. You can’t tell a 6-year old that their difference is going to make them the person that everyone knows. A statement like that would be overwhelming and cause some tears. You can’t tell your child that this life they live with 8 fingers and toes is not the norm. That the girls will whisper and the boys will hide. All off this information, if imparted to me by my parents would have shaken my soul. It would have broken me. It likely would have changed the trajectory of my life. I would not be the happy person I am today if I had known more about my difference when I was younger. In some weird way, I am forever glad that my parents mainstreamed me. Fast forward to today, and the reality of being easily recognizable always feels like a crushing, surprise blow to my ego.
Growing up not only were my parents trying to encourage that I appeared normal, but I was striving for the same thing, too. In fact I even pretended 'IT’ (my physical difference) wasn't there. But now that I'm an adult, I can’t. I know now that I'm different and it's obvious. It disqualifies me from sitting in exit rows on the airplane, overlooked for dates, desired positions and promotions at work, and even missed social opportunities. I can’t bring it up because then it becomes about me, the attention fiend looking for preferential treatment, making things awkward, wanting to get noticed when all I want to do is hide or blend in. It’s ironic. I have to wait until it is pointed out. Then I must be am prepared to address it.
I'm getting better at being noticed. I introduce myself when I get addressed by name at the coffee maker at work. It backfires sometimes. One woman politely pointed out that I’ve introduced myself to her three times. Oh well! So much for being polite.
What surprises me most of all is that the handful of people that I’ve spoken to about this revelation of easy recognition, some with physical differences, but others whom would be considered ‘normal bodied’, completely understood where I was coming from. They get that this phenomenon of someone knowing you, but you not knowing them is, well, for want of a better term, strange.
We can’t pretend that my facial difference isn’t there staring you in the face, literally. I see what you see and I even know what you might think. I hate that it's uncomfortable, but it is what it is. We are both accomplices to this a social faux pas. Physical difference should be celebrated. We must ask ourselves, how can we change the narrative? Can we use mind control to make the world a kinder place? Because I wish we could. No, I think we need to educate more people around the world about facial differences. I am so happy we celebrate Craniofacial Acceptance Month each September. Hopefully, this annual acceptance month, dedicated to those of us with facial differences will raise awareness about issues like being easily recognized for something we did not choose, a facial difference due to a genetic condition.
I'd be more comfortable, you’d be more comfortable, and maybe, just maybe, the world would be too.
Until then, I’ll see you at the coffee maker or at the train station. Do forgive me if I forget your name.