On my bedroom dresser, in a silver frame under the window, stands one of my favorite photographs of Ethan. Taken when he was three, it’s his first school picture. He’s dressed almost formally in a dark blue button down shirt, his hair still summer blond, his skin golden. And as he rests his chin in his hand, he smiles toward the viewer in a way that’s slightly devilish.
There is a picture of me at that age which I haven’t seen in probably forty years. Even so, I remember the black and white
A-line summer dress I wore and the way my cropped hair emphasized the roundness of my head. Most likely, I was squinting, not from the sun or the camera’s bright flash, but because that’s how I posed as a child, squinching my whole face with effort the moment the crouching photographer, my father, told me to smile. The hem of my dress was trimmed in lace made of matching fabric. Below it, the thin silver pole of a leg brace ran along my right calf, met by a scuffed white ankle-high shoe. The fact that I was wearing the brace sets this apart from any other picture of me. For a long time, I assumed it was merely lost among our many boxes of curled family photos. Now I understand that it’s gone, that my mother made it disappear just as she cut her own head off in snapshots she found unflattering.
But back when I last held the photo in my small hand, I remember being untroubled. “Oh,” I thought. I had seen posters of children leaning on crutches or posing in wheelchairs and it occurred to me that I was like them. The feeling was simple. An acknowledgement. “Oh.”
Soon after the picture was taken, it was decided that I need only wear the brace at night. It became part of my bedtime ritual, pressing my foot against my mother’s soft stomach as she tied the laces of the heavy shoe and buckled it to the cold metal brace. Sometimes, as she worked she told me of the olden days when she wore clunky ankle-high shoes like mine. More often she simply described our plans for the following day. A walk to town for pizza at Gino’s. A play-date with Daphne at
The shoe put my foot to sleep in that needle-pricking kind of way. It ripped the inner lining of my quilt. But I could draw with it, scrapes that looked like winter branches growing along the yellow wall. Mornings, my mother stuffed the brace in a brown grocery bag and left it on the floor of my closet. Behind the door it hid, a family secret. I didn’t have to wear it when friends slept over. I didn’t have to think about it again until bedtime.
“It’s nothing,” my mother told me. “Some people wear glasses. You have this.”
To me the word palsy sounded like pansy. Like paisley. When we took our monthly trips to the cerebral palsy center, I sat in the back seat trying not to get carsick, waiting for Bobby Sherman to sing Easy Come, Easy Go on the radio. Once there, we entered a small office that was always too cold. The doctor lifted me onto an examining table and wrote on my instep with a ballpoint pen, probably to indicate to my observing parents the curve of my foot the brace might correct. At the time, I imagined he was jotting notes to himself, that although I would no longer be able to see them after my bath that night, he could read those marks from month to month the way detectives read messages written in invisible ink.
Leaving his office, we threaded our way past the residents who crowded the halls in their wheelchairs barking out strange noises. They turned their twisted bodies in our direction, occasionally brushing my sleeve with a sharp gnarled hand. All the while, I watched my mother. Her slender back straight and stiff, her gaze trained forward, her thin lips pressed together as though she were trying not to inhale.
This is what I understood about my cerebral palsy. That it was nothing. That it was secret. That because of it a doctor had to write on my foot once a month at a center for people who made alarming sounds and had crooked bodies. Bits of disconnected awareness came to me, like stirring from sleep just enough to know you’re in bed, that you needn’t yet rise. A coming to that is vague and slow.
But of course there’s that other kind of waking, where you’re jolted to consciousness, cold water poured on your unsuspecting head.
One hazy summer Sunday when I was seven years old, I sat on the wooden fence in front of Marianne Colasanti’s house. Marianne had gone somewhere with her parents as had my friends Riva and Daphne. That left me and Lori Reiss alone on the block. I didn’t like Lori. She had a way of speaking sweetly, coaxingly, then suddenly saying something cruel. But that day we only had each other. Propped on the fence, we swung our thin legs as we watched traffic zoom past the empty school yard across the street.
“I’m bored,” Lori drawled.
“Maybe I could ask my dad if we could go under the sprinklers,” I offered.
“Nah,” she sighed, resting her elbows on her bony knees. “I know,” she said hopping from the fence. “Let’s walk like people who limp.”
The idea made me uncomfortable but I slid down and followed her in a circle, my shorts creeping up as I did my best to imitate her awkward moves. Lori stopped hobbling and watched me, tucking a strand of dirty blond hair away from her face.
“Just walk like you always do,” she advised. “You walk like people who limp.”
Ice water. Heart-pounding wakefulness. It was the first time I realized my disability was something people could see.
In Ethan’s current school picture, from sixth grade, there’s a protected quality about him. His clothes are intentionally disheveled, his close-mouthed smile so slight you have to search for it. It’s as though he wants us to know he’s getting a little old for this annual ritual. He’ll do it, for us, but he’s not about to dress up and say cheese. I’m not surprised by this attitude. At his age, I was the same way. Yet I find myself thinking of the harsh awakenings he’s experienced in the years between the two photos. He doesn’t have to worry about the unsaid the way I did; there are no family secrets for him to come upon or have to keep. But at three-and-a-half, he became a child of divorce. At five, he saw the World Trade Center catch fire and disappear from the skyline. At eight he had to say goodbye to a man I’d had a live-in relationship with for three years and learn to make room for Dan. All the while, he walks among peers including those like Lori Reiss who, due to their own set of hurts, will try to cut into him. I understand that I can’t protect him from any of it, but that knowledge doesn’t stop me from wanting to.