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Friday, May 24, 2024

Who Are We If Not Our Faces?

This story is adapted from A Face for Picasso: Coming of Age With Crouzon Syndrome, by Ariel Henley. 

When Picasso was young and could not afford new canvases, he painted over his own paintings. Beneath The Blue Room, a 1901 painting of a naked woman bathing in the middle of Picasso's Boulevard de Clichy studio in Paris, is a portrait of a bearded man in a bow tie, resting his head on his hand.

Art experts had long suspected something underneath The Blue Room. In the 1950s, they noticed areas where brushstrokes were inconsistent and pigments differed. By 1997, x-rays confirmed there was something there, but it wasn't until infrared technology was used in 2008 that the man's face was revealed.

Sometimes it felt like my twin sister Zan and I were one of Picasso's layered paintings, always being painted over. Zan and I had Crouzon syndrome, a rare craniofacial condition where the bones in the head fuse prematurely. Undergoing dozens of operations to expand our skulls and shift the bones in our faces, it was like the truth of who we were was erased to make room for who we were becoming.

In October 2001, the year before I entered middle school, two years before I enrolled in Ms. J's art class and four years after we moved into the house my dad rebuilt, my mom mentioned an appointment with Dr. York to discuss our next midface advancement. Zan and I were 10 years old and returning home from a weeklong camping trip in the Santa Cruz Mountains with our class. It was a week of hiking and sleeping in a cabin with our friends, a week of feeling normal.

We lived off the main boulevard, just a couple of miles from the elementary school. After a week of sleeping in a bed that was not my own, I was even more excited to be home. Until my dad drove past our driveway without slowing down.

"Where are we going?" I asked.

"To see Dr. York."

Zan and I exchanged confused glances.

"We're going all the way to San Francisco now?" I asked again. We had already been stuck on a bus for two hours that morning, and the city was another hour away.

"This was the only time he could see us." Mom shrugged.

I sat on a medical stool in the exam room, still in my camp clothes, as Dr. York pushed the round wire frames of his glasses closer to the top of his nose. His glance remained fixed on the computer next to him, where pictures of my face from every angle covered the screen. The photos had been taken three months earlier, at the previous appointment.

Dr. York had asked me to stand against the back wall of the exam room.

"Smile," he'd said, as he held the camera just inches from my face. "OK, now let's do one without you smiling." I let my face fall, and my mouth shifted into a frown.

He had me turn my body to one side, then to the other.

"Look up. Now look down."

He'd been taking these photos periodically since I was a child. "It'll help us track the progress of your appearance," he always told me.

I'd never minded the photos being taken, but that afternoon was the first time I saw all of them displayed. I was fascinated by Dr. York scrolling through the photos on his screen. First he considered those from my previous appointment. Then he viewed before-and-after shots from each of my operations. I understood that my asymmetrical features had nothing to do with who I was as a person, but to the world around me, this was all that mattered. Even as a child, I understood that I did not measure up to the deeply ingrained Western standards of beauty. Amid images of me with crooked eyes, then less crooked eyes; missing front teeth, then a retainer with fake teeth; a flat nose, then a straight nose—I did not see progress. Only more flaws I wanted corrected.

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There'd been a time when Zan and I were so identical, I could hardly tell where I ended and she began. In photos from childhood, I cannot tell you who is who. After our diagnosis, my parents had a portrait taken of Zan and me. For years afterward, it hung in the hallway of the craniofacial unit at the Children's Hospital in Oakland. It was part of the hospital's campaign celebrating patients' unique, diverse faces.

In the photo, Zan and I are 3 years old, dressed in matching cream-and-green dresses that frilled outward at our waists. We have soft brown hair that sits just above our shoulders. Our eyes poke out of our faces so far that just from looking at the photo, I fear they'll fall out. The children in the image seem unbothered and unaware of their differences. They are smiling and happy.

Zan and I would walk past the portrait on our way in for surgery. The nurses would often smile and point. "Look, it's you," they'd say, before asking who was who.

"That's me and that's Zan," I'd sometimes tell them, but if it weren't for the names on the plaque next to the photo, I never would've known. Because it wasn't our portrait that had been painted over, it was our physical bodies, our faces. And the older we got, the more our appearance reminded us of the change and pain we were forced to endure. Eventually, the nurses stopped pointing to the portrait every time we passed it.

Like the childhood image of Zan and me that had long been hanging on the wall of the hospital, the photos Dr. York took in his office emphasized my facial differences. It wasn't just the fact that my eyes were too far apart on my face. They were also crooked, with the outsides of my eyelids slanting downward, like scribbles running off a page.

Their crookedness was further enhanced by the differences between my eyes: Whereas my left eyelid cupped my eye as if to hold it and protect it, the lower eyelid on the right was flat and offered minimal support. This meant that more of my right eye was exposed, making it more sensitive to touch and wind and temperature.

If the air outside was cold, or if so much as a fan swept air through my room, my eye would water uncontrollably. This caused half my face to almost always appear red and splotchy, as if I'd been crying from only one half of me. When this happened in public, strangers would stop me on the street to ask if I was OK.

"Oh yes," I would tell them. "My eyes are just watery."

I would smile, but they'd look at me skeptically, convinced I needed help.

From the side, my small cheeks and shallow eye sockets made my large brown eyes protrude from my head like those of a fly. My profile revealed an underdeveloped upper jaw and a flat face to match my long, flat head. My ears sat too low.

Zan's appearance was similar. She had large eyes that, like mine, slanted downward. Strangers often asked why our eyes were shaped the way they were, so crooked and far apart.

"I don't know," I would lie. "We just came that way." Sometimes I wanted to tell people the truth about our faces, but mostly I hated the way they felt entitled to our story.

At school, children compared our appearance to that of a pug or to Sloth from The Goonies. And seeing some of the images of my face on the screen, images from before my face changed, I finally understood why they'd done it.

Though I denied it, I understood that I was different. I didn’t feel different, but after years of constant stares and comments, I began to internalize it. Before that afternoon in Dr. York’s office, I believed that no matter what my face looked like, I was still me. But I had normalized my differences. Sometimes the operations altered our faces drastically overnight. But there were also operations that resulted in subtle changes—a tweak here and a lift there—that came together to make more significant changes. Looking at the photos meant viewing all the versions of my face I had no longer normalized. I'd seen the images before but never all at once. It was like I was seeing myself for the first time. I grew horrified by the fact that I'd been walking around with features so unconventional they were frightening. I wondered if that was how the children at school felt, if that was how strangers on the street felt when they passed us: frightened.

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When I could no longer bear to look at the images on the screen, I focused on the varying shades of white paint covering the exam room wall in front of me. The colors overlapped, but the longer I stared, the more they blurred together. After a moment, I turned my head to look at Zan, seated next to my mom in the corner of the room. My dad stood with his back against the doorframe, hands resting casually in his pockets.

"This is the area I'm worried about." Dr. York was looking at an x-ray now. He dragged his mouse across the top of the image near the forehead.

"What are you worried about?" Zan asked, as she rubbed the sweat from her hands onto her jeans.

Dr. York opened a photo of Zan and me next to our x-rays, so he could view them side by side.

"When we did this surgery last time, the girls were, what, 4 … 5?"

Mom nodded.

"It was great progress and served the girls well, but they were not fully developed. We knew there would be a chance we'd have to expand it again." He turned from the computer and placed his hands on my face. "We can see their faces changing."

He massaged my cheekbones and stared intently at the outer areas next to each of my eyes. "See how hollow this is?"

I gently shook my head free from his grasp and watched as he walked over to Zan.

"Do you see the indents here?" he asked, pointing again at the outer edges of her eyes. "This is just one example that I want you to see, because if you look at the photos from a few years ago, you can see we are regressing."

My parents nodded along, looking from Dr. York to the computer, to Zan and me.

"The girls have outgrown their faces."

When had we grown into our faces? I wondered.

Having Crouzon syndrome meant surgeons had to make my head and face grow for me. To the world around me, my face was my identity. And as a young girl growing up in a society obsessed with beauty, I understood that my identity was nothing without beauty. I had no control over my appearance and no control over how the world viewed me. “Correcting” my appearance wasn’t just about the operations needed to keep me alive. It was about changing myself — conforming to a world that believed people like me shouldn’t exist.

The first time he did the surgery, there was so much talk of progress and how much better we looked. But there were always things that needed correcting. Zan and I could never just be content with the way we were.

Zan and I were just 4 years old the first time our faces changed. The first time we looked in the mirror and didn't recognize ourselves. The first time we understood that our faces not only resembled one of Picasso’s cubist paintings, but that we were taught to believe we’d be more valuable if we painted over our differences—if we covered the truth of who we were. The first time we looked at each other and saw a stranger. The first time we understood what it meant not to belong in our own bodies. The first time we had to confront who we were if not our faces.

Now it was happening all over again.

This is a modified excerpt from A Face for Picasso: Coming of Age With Crouzon Syndrome, by Ariel Henley. Copyright © 2021. Available from Farrar, Straus and Giroux (BYR), an imprint of Macmillan.

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