The Painful Reflections of My Childhood With a Craniofacial Disorder

I have Crouzon Syndrome. Crouzon, like “crouton” with a “Z.” (That’s what I tell people that have never heard of it.) Crouzon Syndrome is a disease where the bones in the head fuse prematurely. I repeat this line often.

As a baby, my mother would take my twin sister and I to the doctor so frequently, they thought she was paranoid, or suffering from postpartum depression. There’s something wrong, she would tell them. I can feel it. And even though I started having seizures the first week I was born, they would assure her that her babies were fine, that things would get better. But my mother refused to listen — always taking us to different hospitals, different doctors, different specialists.

We looked healthy at first, until our eyes began to bulge so much they looked like little golf balls in the center of our faces. The seizures became more common. Doctors thought I was epileptic. Then they thought I had Down syndrome. Then it was a whole host of other conditions, seeking to explain what was going on, but none of them did.

When I was learning to talk, my mother would play with me, teaching me to identify the parts of my body. She would point to her eyes and I would mimic her, pointing to my own face, saying eyes. I would do this for every feature: eyes, nose, mouth, ears, bump. The bones in my head fused when I was just an infant, and the pressure in my skull caused my head to swell, forming a large bump on the top of my head. Sometimes I imagine myself as a child, walking around with my bump and with my large, oddly shaped head, like one of the characters in “Coneheads,” and the situation feels easier, lighter even.

A neurosurgeon at a hospital in Oakland was the one to finally diagnose my sister and I with Crouzon Syndrome. My mother and father sat in an exam room, holding us, waiting. Within two minutes of the surgeon entering the exam room, they had a diagnosis. My parents did not know what this meant for us, but they were hopeful, relieved, optimistic. “Great, give us medicine and we’ll be on our way,” my father told the doctor. But the process of correcting the disease had only just begun. Within a few weeks, my sister and I had our first surgery to expand our skulls.

At the time, we were the only set of twins known to both have and survive the disease.

The surgeries to advance my skull and the middle of my face were known as the Lefort procedures – Lefort I, Lefort II, and Lefort III, with each surgery focusing on a different area of the head and the face. The surgeries to advance my mid-face and my skull were performed periodically as I grew, because the bones did not grow on their own. The doctors would cut my scalp from ear to ear, and break the bones in my head and in my face, moving them, shifting them closer to where they were supposed to be, placing plates and screws to keep everything in place. Each procedure had to be done separately, because individually they were dangerous, but together they were deadly.

The surgeries were hard, but the recovery was harder, because no matter what, I was never quite prepared. I would wake up, my head always bandaged, my eyes swollen shut. I couldn’t see, I couldn’t speak, and so I would lie there waiting as the minutes, the hours, the days would pass. By the time I could open my eyes, I never wanted to. Each surgery changed my appearance, sometimes so drastically I refused to look into the mirror for weeks because I was afraid of what I would see staring back.

When I was seven, my mother visited every first grade class at my elementary school to explain to my classmates why my sister and I looked the way that we did. She asked each student to hold out their arm. She then had each student pinch themselves. Did that hurt? She asked the students and they said that it did. It hurts them, too, she told my classmates. They are no different from you. They feel the same things, like the same things, think the same things. They just look a little bit different from you. At recess I went outside and skipped rope with the girls in my class. And that was that.

In school, my sister and I were almost always in separate classes. The school wanted to keep us together, but we wanted to be separated because we weren’t treated as poorly when we weren’t together. One kid with a disease could fly under the radar, but two kids with a disease stood out like a sore thumb to the other children.

My parents worked hard to always make us feel normal. Anything other kids did, we could do too.

Warriors aren’t fragile, I would tell myself as I got ready for school in the mornings. My mother and father were unable to homeschool us, so we attended the local public school with the other kids in our town. I loved school and I loved learning, but it was often hard to separate my “medical” self and my “normal kid” self. Sometimes I would have surgery and return to school the following day with bruises covering my body and stitches or staples slightly protruding from my face and my head. Sometimes children would care, but I was a daydreamer and spent more time in my mind than in reality, so I tried not to notice.

Because my family always treated us like we were no different from anyone else, I never understood the stares and the comments whenever I was in public. What’s wrong with her eyes? Look at her face. Why are her eyes like that? Ewww, look at the ugly girl. The comments, the stares, the pointing. Sometimes I would get so frustrated, so angry, I would glare back and tell onlookers to take a picture.

Sometimes I wish I could bring my mother with me to explain my disease to everyone I’m forced to encounter.

Hold your arm out and pinch your skin, I imagine her saying, because pain is universal, she would tell them.

And maybe then people would get it.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.