Hi.

My name is Ariel. I write about growing up with a facial disfigurement, as a result of Crouzon syndrome. I'm also interested in issues related to beauty, equality, human connection, and trauma. Thank you so much for reading!

My face is disfigured. When I met the right guy, he didn’t even bring it up. || THE WASHINGTON POST

My face is disfigured. When I met the right guy, he didn’t even bring it up. || THE WASHINGTON POST

The first time a boy asked me out, it was a prank — a joke. A joke I found humiliating and heartbreaking. I was 13.

“Will you go out with me?” the boy asked me at the end of our seventh-grade history class.

“What?” I was surprised, stunned — doing my best to hide my elation that someone could like me. Me. The bell rang before I could answer his question.

After school, I called his house, wanting to apologize. “I didn’t mean to be rude,” I told him. I had spent the year infatuated with this boy and yes, I wanted to “go out” with him.

When his mother put him on the phone, he laughed. “Yeah, Ariel. It was a joke,” he said. “I don’t want to go out with you.”

I hung up the phone. Mortified, I spent the evening in my room. At school the next day, I tried everything I could think of to get out of going to history class, to no avail. I walked in the classroom with my head down. During our group projects that afternoon, the boy brought it up in front of our classmates.

“I can’t believe you called me,” he said.

When another student, another girl in the group, asked what he was talking about, he laughed again.

“Ariel called my house yesterday, because she actually thought I wanted to go out with her.”

The rest of the group laughed with him.

I could feel tears of embarrassment coming, so I rushed back to my desk in the corner of the classroom, grabbed my backpack and sprinted to the office. I would be going home.

In my mind, I remember seventh grade as the year I learned that my appearance is what defined me — to people who didn’t know me, anyway. This was the year I learned that though I do not identify as being disfigured, to the general population, I am. I was born with Crouzon syndrome, a rare craniofacial disorder where the bones in the head fuse prematurely.

Surgeons had to periodically expand my skull and face, because the bones did not grow on their own. Even with these surgeries, there was still a noticeable difference in my appearance. My face and eyes were swollen for months. My head always hurt. Much of my hair was gone from where the nurses shaved my head, clearing a path straight across the center of my scalp, where the doctor drew on my skin to mark the incision.

Dating while disfigured is difficult. For a long time, when it came to dating, my physical appearance was all I could think about. My eyes are crooked and spaced too far apart. My ears are too low on my oddly shaped head. Though I rarely felt unattractive, it was hard to ignore the stares and the comments so frequently signaling otherwise. Still, I have always believed myself to be worthy of love.

I didn’t date until college. The more surgery I had to correct my appearance, the less prominent my disfigurement became. As I became more comfortable with myself, I became more comfortable with the idea of allowing myself to be loved by another person.

As an adult, my dating life has been relatively normal. Sometimes there’s a connection and sometimes there’s not. I’ve been on good dates — the kind where you leave with butterflies in your belly for days afterward. I’ve been on mediocre dates with kind men, but we had nothing in common and not much to talk about. I’ve been on bad dates with ignorant, arrogant men I wanted nothing to do with. I have been rejected, and I have rejected others. I have fallen in love, and I’ve fallen out of love. I’ve tried dating sites, dating apps and blind dates.

In 2014, a year out of college and reeling from a breakup, I made an online dating profile. When I created my profile, I did my best to post pictures that clearly showed who I was and what I looked like. Some messages were nice, others weren’t. Some men were curious, wondering why my eyes were shaped the way they were. Others simply wanted to take me to dinner.

Before I met my current boyfriend, I only ever seriously dated men who showed me what love wasn’t. Now, I’m lucky to have fallen in love with a wonderful man. The kind of man who always makes me feel like the most beautiful woman in the room. The kind of man who, when I mention my disfigurement, says “what disfigurement?”

My boyfriend and I didn’t discuss my appearance until we’d been dating for a month. When I finally told him about my condition, I asked him why he hadn’t asked me about it.

“Do people … men you’ve dated … do they normally do that?” His eyes were wide, his tone disapproving.

“Yes.” I told him.

He shook his head. “And how does that make you feel?”

“Terrible. Small,” I said, trying not to cry.

“Exactly,” he said. “So why would I do that?”

I shrugged.

When people find out I have a boyfriend, reactions vary. Some people care, many do not. “Oh, how cute,” some say condescendingly. As if it’s a miracle that I found someone to love me. Others, who understand how rare a real, genuine connection is — facial disfigurement or not — seem genuinely happy that I’ve met someone.

There are still people who say unkind things — people like the boy in my seventh grade history class and strangers on the street. But when my boyfriend turns to me and says, “I’m so lucky to be with you,” it no longer matters. To the people who love me, I am not my condition. I am simply me. 

ORIGINALLY PUBLISHED IN THE WASHINGTON POST

White Noise || THE RUMPUS

White Noise || THE RUMPUS

My Family's House Burned Down... Twice. Then The Bank Took It Away || NARRATIVELY

My Family's House Burned Down... Twice. Then The Bank Took It Away || NARRATIVELY