When I was seven, I tied myself to the large desk chair that sat behind the mahogany desk in the corner of the hotel room, in which I lived. I bound my legs to the legs of the chair and an arm to the arm. I left one arm free and sat in the dark room, waiting.
I sat, tied up in the corner of my room, waiting for the heavy green door with the large brass lock to swing open and for my mother to tell me it was time to go.
As I sat and waited, I glanced across the room at my sister asleep in the bed that we shared. An oxygen mask was strapped to her face and wires from monitors were draped across her small, fragile frame. I watched the rise and fall of her chest, and I felt the pain as her body struggled for each breath. But that’s what happens when you love someone—her pain is your pain. I watched her sleeping, her knees pulled in close to her chest, and she looked so small and so beautiful and I wanted to carry the world for her. Tears rolled down my cheeks and I couldn’t understand why someone had to hurt so badly.
I shifted my focus to the crack in the curtains as a bird perched itself on the railing of the balcony outside my window. It was early in the morning, as the world began painting the sky with pinks and oranges and reds, but I focused on the creature and the way the rich white of its feathers stood like a burning beacon against the vibrant morning sky. I watched it, shifting closer to the glass of the door, exposed through the edge of the curtain. The bird looked at me, its black eyes, like holes in the center of its face. It was small and innocent—a solitary, but beautiful guide. With the sound from the swipe of a hotel card and glide of the door against the green carpet, the bird disappeared from the railing, becoming an ever bright, white speck against the sunrise.
My mother’s voice was soft, as she whispered into the dark room.
Belle? Are you awake?
Belle was a nickname my family had given me after they found out my sister and I were sick. It means beautiful, my mother told me. She’d whisper it every morning and every night as she kissed my cheeks and my forehead and told me that she loved me.
My mother called for me, again, but I didn’t respond. Instead, I sat holding my breath, trying so very hard not to move.
The lamp on the desk clicked on and I saw the tired eyes of my mother as she saw me. What are you doing? She rubbed her eyes, her arms folded across her body, shielding her from the morning chills.
I’m not going. I was young and I was defiant; too defiant and too painfully aware of what was to come.
Even as a child, I couldn’t sleep well, and so I would often sit in the chair in the corner as my sister slept, and watch the sky come to life and fade to darkness again and again and again. I suppose, even at such a young age, I was not quite normal. I spent my nights too tired to sleep, or too awake to be tired, and so I would sit and watch the world unfold through the crack of the window that was visible through the drawn curtains. My mother walked over to me and kneeled at my feet, as she began untying the knots in the rope that I had pathetically attempted to bind myself to the chair with. Tears flooded my cheeks and I sat there, in the dimly lit hotel room, hanging my head to my chest.
Please don’t let them hurt me.
My mother finished removing the rope from my arms and from my legs and pulled me to her. She put my head to her chest and I could feel the warmth of her arms around me. The vibrations in her chest, as she told me that everything was going to be okay, echoed through my ears, and I knew that it was time to go.
When I was a kid, my mother would give me a Precious Moments figurine for my birthday each year. They were porcelain figures of angels and children with teardrop eyes. My twin sister and I were the only ones in my family that were sick, and each year was as much a surprise as it was an accomplishment, and so each year we got another figurine with another number celebrating another year.
My mother collected the figures as well. On top of the deep oak dresser that my father built her, she had a frost colored snow globe. Inside were two of the children—two girls with brown porcelain hair and brown porcelain eyes—holding hands. An angel—another girl with brown porcelain hair and brown porcelain eyes—was attached to the top of the globe with outstretched wings. That’s us, my mother would tell me. So you know that you’ll never have to be alone.
The night before my surgery and before I tied myself to the mahogany chair in the corner of the hotel room, in which I lived, I found my mother crying. I walked into her room and saw her kneeling in front of the dresser and in front of the globe. Her chin was to her chest and her sobs sounded breathless. Her sobs left an emptiness in my core and a pain in my chest. Please just save them. I’ll do anything. Please. I stood in the doorway watching my mother pray to God and to the angels and I knew I had to be okay. Not for me, but for her—for her and my father and my sisters and my brother, because the whole world may not stop when someone dies, but sometimes it feels like it does.
We drove to the hospital in silence, listening only to the passing cars and to the wind as it wrapped the world around us in a swift but gentle hug. The raw and relentless fog rolled through as we passed Berkeley and the Oakland hills and into the heart of the city where graffiti decorated billboards and buildings, and homeless men slept on the corners. I don’t remember what month it was or even the time of the year, but I can tell you of the way the fear sat lodged in the back of my throat and of the way I prayed the whole way to the hospital, begging God to make it stop.
Each room of the hospital was white with white walls and white chairs and the halls were filled with doctors in white lab coats. The world felt far and close and everything was so quiet. The silence screamed like a haunting voice through the white lights and walls. I shut my eyes and clenched my fists around the hands of my mother, as my lungs filled with gas, but the white appeared again, like speckles in the darkness.
The operating table was hard and I could hear my heart beat in my ears and in my throat as I listened to the monitors around me. Hands covered me, grabbing at my chest and at the gown that loosely covered my otherwise naked body. I could feel monitor buttons being stuck to my chest, but I was fading and I didn’t mind.
The nurses were calm and their laughter was soothing. I had known them for years and still I hated them. I could hear my mother’s voice as she stood next to me. Her hand in mine, she promised not to let go. My world continued spinning, a vibration in my core that buzzed in my ears. I love you, Belle. And I was gone.
I woke from surgery to the monitors and to the shuffling of the nurse’s feet in the Intensive Care Unit. My head was heavy and I couldn’t see. I could feel the medicine running through me, and it burned as it swam through my veins. My head was bandaged and I could taste the blood that had dried and crusted to my lips. I couldn’t speak, but there was a numbing pain, the kind of pain where you forget what it’s like not to hurt. And so I closed my eyes and drifted away.
I woke again to doctors turning screws that had been implanted in my cheeks to shift the bones in my head and in my face. Just one more, the doctor whispered as I screamed. You’re doing so well. I gripped the blanket in my hands as the tears flooded my face, and I waited for the nightmare to end.
My body was weak and it was tired and so I stayed motionless in the hospital bed, listening to the cries and screams of the other children, praying for silence.
It was the first time I died. That day, I mean. That day that I knew, even as a child, that I would have to hurt, but still fight like hell to be okay. I don’t know how it happened, but it was the most beautiful peace.
My body grew warm. I could feel it in my face and in my neck—like I was a furnace heating the world around me. The machines next to me began screaming. A voice came over the speaker and doctors and nurses rushed to my bed. And when I woke to the tears of my mother, she stroked my hair, and the doctors and the nurses made a comment about how I was lucky. It was the first time that I died, and I’m still learning how to be okay.
While recovering, everything that should have never happened, happened. It was lonely, the kind of loneliness where you can’t even feel your own presence. And it was tiring, the kind of exhaustion that scratches at your eyelids and claws at your throat. But after too many weeks of growing accustomed to the smell of alcohol and to the rhythmic beeping of the monitors in the Intensive Care Unit, I returned home.
I cried the first time I saw my reflection. The surgery had shifted my bones, as the surgeries before it had done, and as the surgeries after it would do again. And each time, I came out looking and feeling less and less like myself. I want my old face back, I would tell my mother. But Belle, you’re so beautiful, she would tell me, as she cupped my face with her hands.
At night, as we lay in the bed that we shared, my sister would gently place her hands on my face, just above the bruises, and I would place my hands on hers, and together we would cry about the way we could no longer recognize each other by anything but the sound of our voices.
I spent the next month curled up in the chair in the corner of my room. The shades stayed drawn, and the doors remained locked. My eyes remained glued to the silent television. Day after day. I can’t even tell you what I watched. Or what I ate. I can’t tell you much of anything about that time, because it’s still raw. It’s still real. I was just a child, and still, I can taste the blood and smell the IV drip. I can still hear the cries and I can still recite the prayers. I can still retrace the scars, and live it again and again and again. I can still feel the sting of the medicine pulsing through my veins and I can still feel the innocence it stole. I can still remember the death I died. And it’s still too real. I was angry and I was sad, and so often the things that hurt us are the things that help us.
People never detail the confusion—the way days feel like years, and seconds like hours. They don’t tell you of how heavy the world feels, how the weight of the hair on your head will sometimes feel like too much. They don’t tell you of the visitors that won’t come and how you tell yourself you’re glad nobody comes, because that leaves you nobody to comfort. They don’t tell you what it’s like to watch your parents watch you die or how it feels to be so weak, yet so strong. They don’t tell you that time doesn’t stop for anybody.
They don’t tell you of the beauty in knowing who you are and the way learning to define yourself by things outside of your physical appearance is the most beautiful gift. They don’t tell you of the connections you’ll form with people, because everyone is fighting a battle and sometimes someone who just understands is the greatest blessing.
More often than not, the world will act as though you are your disease, but you’ll hold your head proudly and remind the world and yourself that you have Crouzon syndrome.
It does not have you.
I sit here at a cheap wooden desk in an apartment across the country, just months shy of my twenty-sixth birthday. I sit watching the world paint the sky with oranges and reds, as it has done every morning before this and will continue to do every morning after. And birds with white wings and black, beady eyes perch themselves on the ledge outside the window of my apartment, and I watch like a child, as their wings stretch outward, as they fly toward the sun.
They are free.
Rumpus original art by Becca Shaw Glaser.