Living with Treacher Collins syndrome: a true story of awkward desire

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Living with treacher collins syndrome: an aged color photo of a black person with a beard and sunglasses. From the left hand of their face to the edge of the photo is distorted, symbolising the distorted view of oneself a person.

Living with Treacher Collins syndrome

Elmo reveals his awkward sexual encounter afterthoughts

An awkward sexual encounter! Or rather non encounter. Living with Treacher Collins Syndrome distorts your view of how people will look at you, even if you yourself don’t see it at the time. You end up with stories like this one..

Sesame street was on the TV. Big Bird looked so big. So yellow. The room tilted and swam with the after-effects of last night’s binge. There was a girl on the floor in front of me wearing only a battered tank top and bright yellow panties.

“Look at Big Bird.” She said.

“I’m looking,” I said.

“He’s so big.”

“And yellow.”

She kicked her feet. Played with her hair. Did I tell you her eyes were gray? Because her eyes were gray.

“Why are we watching Sesame Street?” I asked, rubbing my face.

She grunted. Shrugged. Flopped on her back and looked at the ceiling. Her name was Allie.

She’d been hanging around me and my roommate Marshall a lot lately. She asked me all the time if I thought Marshall was into her. I said, I don’t know. “But you’re beautiful, though.”

She usually just shrugged. Compliments from people like me don’t mean much to people with normal faces.

Once, she sat on my lap.

“Getting excited, huh?” She’d said.

I looked into her eyes.

I tried to smile.

“What are you looking at?”

“Your eyes are so gray.”


Now there I was. On her couch. Without a clue how I got there. I knew there was no way we had drunken sex. No one, even the drunkest of drunks, ever even remotely considered me a sexual creature. Just a creature.

Living with Treacher Collins syndrome shattered my self confidence



This is present-day, Greg. I would just like to take a moment to scream at past Greg, for all his fuck ups, for letting the hatreds of the world seep into his own skull like a fever dream. Blinding him. Ruining him. I want to slap him awake. Actually, I think I will.

Yeah, ouch. I literally slapped my own face. Hard enough, I hope past Greg felt a stinging in his cheek.

On the tube, Elmo sang about how it was his world. It felt sinister. Like he was an evil genius bent on making everyone bend the knee to him, in this, Elmo’s domain.

“What are you thinking about?” Allie said, rolling onto her belly and scrolling through her phone.

“Really dumb stuff.”

Silence! The type of silence that sounds like an exclamation mark. I watched her type into her phone and kick her legs. She groaned and fired the remote at the TV. Elmo’s dystopia faded to black.

“Hey!” I said.


She yanked open the fridge, cracked a bottle, and sat on the counter.

“An issue has arisen I’m sensing,” I said.

She laughed.

“You’re funny.”

“Oh! Uh!”

She chugged the soda, tossed it somewhere. Her phone beeped. She barrelled across the room, swiped open the screen, then threw it down again.

“I just need to get laid!” She said, flinging her head back.

I think she was talking to god. She sat on the floor. We watched the blank TV for a while. 

One of the neighbors started blaring John Legend at a high volume.

“Sooo?” I said. “How do you do It?”

“Stare at nothingness? Pretty easy.”

“Greg. How you’ve never…”

“Oh. Ah.”


“You can’t miss something you never had.”

She curled her body around and looked me right the fuck in the eyes. Have you ever seen a pair of purely gray eyes? They’re kind of like a cloudy day. Where it seems like nothing is in the sky, but really everything is in the sky. I couldn’t look away.

She flopped next to me on the couch. She reeked of stale liquor, but her hair smelled like some kind of flower I was too hungover to name.

“Do you really feel that way about me?”


“Marshall showed me your journal.”

Dammit, Marshall! Where’d he even find It?

“Er. Well yeah.”

“Nobody talks about me like that.”

“I really hate Marshall right now.”

She pushed me down on the couch. She straddled my hips. Her bare legs swept against my knees.

“You don’t know what you’re missing.”

She growled, running her fingers through my chaotic mop of hair.

Treacher Collins syndrome had number my ability to see love

Folks. The signs. Abundantly clear. Allie was into me. So clear, only a complete buffoon would miss them. Yet there I was—a complete buffoon. 

When you have a facial disorder caused by Treacher Collins syndrome, the entire world treats you like you are disgusting beyond compare. 

Nice people call you brave and inspiring cause they think you’re so ugly. Mean people punch you in the face and tell you you’re ugly in less guarded language.

It gets to where you think no one, ever, is going to see the real you.

So the part of your brain that processes signals deteriorates until you are me back then. On the couch. With a girl, you have a crush on macking the hell out of you.

And you can’t see it.

How did I not see it?

You want to know what I did, then, with her face inches from mine, gray eyes plumbing to the very depths of my existence as a conscious object?

“Huh?” I laughed.

“Wow.” She said.

We did nothing for a while. Riveting. I know. PBS came back on at some point. Ramen noodles were warmed up.

What a life old Greg led.

What an idiotic life.

I kind of want to slap myself again. But that can’t be healthy. Self-harm isn’t okay. Just know I want to, past Greg. I want you to feel how stupid you are, how wrapped up in the world’s conception of you even though you think you aren’t.

Allies’ phone rang.

“Muffled words words words,” she said into her phone. ” Yeah, I’m not doing nothing.” Her eyes flicked to me.

“Well, that was Jeremy.” She said, chucking the phone somewhere.

“Wishes do come true!” I said.

“He kinda gets on my nerves.”


“He’s not like you.”

“Not many people are.”

Abruptly, without preamble, she set herself on my lap. The silence thrummed between us.

“Greg. Come on.” She grabbed my elbow. Her nails dug into my arm.

“Why? What’s up?”

“Oh my god!” She hurled herself off me and grabbed her keys.

“You mind if I stay here a little?” I said. “Still deeply perturbed about Marshall.”


Living with Treacher Collins Syndrome distorts your view of how people will look at you, even if you yourself don’t see it at the time.

She slammed the door. I sat there, sipping beer and watching kid shows and antique roadshows, as the sun tilted down, and all I was thinking about was how annoyed I was at Marshall. How could he do this to me? Spill all my secrets like that? Now, what does Allie think about me? She must think I’m a creep or something.

Well, now, past Greg, I’m thinking about you. How could you do this to me? This isn’t the only story where your idiocy deprived me of something. There are hundreds. Thousands maybe. You didn’t think you let the world’s conception of you as ugly and subhuman slip into your skull. You thought you were above it all.

But you weren’t

You aren’t.

It makes me wonder if I’m even seeing myself clearly now. How much is this poison still lingering in my mind? How many times have I ruined shit for myself, even today?

Whatever. I don’t feel like thinking about it.

Imma chug some beer and watch PBS, I guess.

Article by
Greg Burkholder

Greg Burkholder is the author of My Face Is More Beautiful Than Yours, a short story collection he's using to raise money for F.A.C.E.S. He was abducted by aliens once. They gave him three dollars.


Living with Treacher Collins Syndrome distorts your view of how people will look at you, even if you yourself don't see it at the time. | ©Codehalo X / Behance CC BY-NC 4.0