One summer day in 1985, a doctor calls my mother and tells her that there is empty space where parts of my brain should be.
“I don’t understand it,” he says. “There should be muscle, and there’s nothing.” More tests, he mumbles. He’s calling in another specialist.
My mother hangs up the phone and starts to cry. I am there with her, crawling around on the floor. I didn’t walk until I was nearly two—my right foot turned inward, my toes pointing left—which is why she took me to the doctor in the first place. But I can smile. I can laugh. I spoke my first word years ago, and now I won’t stop talking.
She knows who I am, my mother thinks. She doesn’t look like she doesn’t have a brain.
“Surgery,” says a neurosurgeon a few days later. Another MRI has shown the following: a cyst, clear and circular, where all of that brain muscle should be. “We’ll put in a shunt to drain it out. Then we’ll see what happens.”
I am almost three.
Cerebral. From the French cérébral, which comes from the Latin cerebrum, meaning the brain. In medical terms, it refers to the affected part of the brain—the area in and around the cortex, and the connections that run from there to the cerebellum.
Palsy. This time, Anglo-French by way of Latin: paralysis, meaning “loosening,” which became paralasie, which then became palsy, or “disease-causing paralysis.” Together, an umbrella term for a number of conditions that restrict and order movement, or don’t allow it at all.
Other uses of cerebral: of or relating to the brain. Involving intelligence rather than emotion or instinct.
Palsy (noun): complete or partial muscle paralysis, often accompanied by loss of sensation and uncontrollable body movements or tremors. A weakening or debilitating influence. A fit of strong emotion marked by the inability to act.
Verb: to paralyze, to deprive of strength.
To make helpless, as with fear.
When I was in my second year of university, I signed up to learn the lindy hop. In my third class, one of my partners tried to make me laugh.
“You have the most horrible look of concentration on your face,” he said. “You always do. No one’s out to win prizes here or anything. Just relax.”
Instead, I stopped going.
In the summer of 1986, surgeons at a hospital in London shave the bottom back half of my head, bore a hole into my skull, and place a ventriculoperitoneal shunt in the back of my left hemisphere. Then they wind the remainder of the shunt down past my kidneys. So many inches of clear plastic tubing.
“If she grows taller than six foot six,” one doctor jokes, “then we’re in trouble.”
But the shunt doesn’t work, and so in 1987, I get another operation. The cyst has the consistency of Jell-O and therefore cannot drain. This time all my hair goes. They slice my head open. They slice the cyst away.
I get six months off school.
The next year, they cut into my right foot and lengthen the Achilles, turn my foot so that it points forward. Onward. Go.
I have a cast that stretches from toes to mid-thigh. I have a taxi driver who takes me to class. And I have classmates who sign my cast and push me around in my wheelchair at recess, until they don’t. When the cast comes off, I have a limp.
“You look like a boy,” new classmates tell me. “Why do you walk so funny?”
I make it to just shy of five foot three. When I’m thirteen, a somersault in tumbling class snaps the shunt in half. I don’t notice it at first; I don’t notice anything until three weeks or so later, when the flu and some terrible back pain send me to the doctor.
I see him even now, waving that slide. “Look at this,” he says. In the x-ray, the shunt is chopped off at the base of my neck. The rest of it lies curled in my abdomen. It took three weeks—twenty-one days and the gentle pull of gravity—to get there.
“Taking it out will pose more of a risk at this point,” the doctor says. “If it’s not bothering you, I would leave it alone.”
It doesn’t bother me. Eighteen years later I can still reach my hand round to my nape and trace the small bump where it ends. The shunt, doing nothing, supported by nothing. Frozen in time now as much as in fluid.
Cerebral palsy, traditionally, falls into four different classifications. The first classification, spastic cerebral palsy, refers to instances where muscle tightness and tone, or lack thereof, is the defining characteristic of the condition. The second type, ataxic cerebral palsy, is indicated by increased difficulty with fine motor skills and difficulty with auditory and visual processing. The third type, dyskinetic or athetoid CP, is characterized by mixed muscle tone with involuntary motions. The fourth type, mixed CP, combines all features of the four categorizations into one condition.
Symptoms can range from those so minor as to be almost unnoticeable all the way to complete muscle paralysis. In 70 percent of cases, CP is congenital—it arises out of some trauma or occurrence before birth. In my case, the cyst that caused the condition grew in my mother’s womb alongside my neurons, my skull, my fingers and toes. Up until the end of high school, I had a MedicAlert bracelet that spelled it out for paramedics in event of a disaster: Spastic cerebral palsy, mild. VP shunt, disconnected.
CP can also occur after birth. A traumatic entry via the birth canal, or the deprivation of oxygen soon after entry into the world. An umbilical cord looped tightly around the neck. Twenty percent of cases happen this way. In the final 10 percent of instances, the condition arises as a result of bacterial meningitis, viral encephalitis, and accidents or injuries that might occur from birth up to the age of three.
It is not a progressive condition, and there is no cure. Instead, there are physiotherapists, braces, special shoes. Inserts. Exercises. Massage therapy. Support groups.
Further research tells me that cysts like the one that grew in my head are a result of brain lesions, which themselves form after some kind of in-utero injury. The space left behind by a brain lesion fills with water (or Jell-O) and becomes a cyst. The cyst puts pressure on the brain, thereby damaging motor neurons and impairing movement. A child walks with her foot turned inward. When that’s fixed, a child limps.
But that child who was saved by surgery walks. The child can run. The child can even dance, albeit not very well.
I grew up fantasizing about ballet shoes, leotards, the theater stage. When I was twelve and enrolled in figure-skating lessons, I choreographed an imaginary routine to the soundtrack from The Lion King. I closed my bedroom door and twirled for hours in the centre of the carpet.
But the realities of dance class and figure skating were very different. My feet were stiff, my hipbones lopsided, my right leg two inches shorter than my left. My spine was curved by the whisper of scoliosis—a side effect of the CP, along with increased likelihood for any or all of the following: early adult-onset arthritis, tendonitis, excessive fatigue as one grows older, and constant pain. Hands and feet that knew what I wanted them to do but would not always do it. Thighs given to trembling. Knees given to spasms. An imagination that went everywhere. A body that would not follow.
I stopped dancing, eventually, and started running instead.
I don’t watch figure skating anymore.
As with most creative pursuits, dance is as much about failure as it is about perfection. You fail until you don’t. You work through the mistakes until they become a part of you, until they disappear into the arches of your feet. You learn the wrong ways to bend and the imperfect plié so that when the perfect moments come—those confident arches, that effortless weight of outstretched arm—you’ll know the difference.
You make all of your mistakes in practice so that when the perfect moment comes, it stands out. You stumble beforehand so that when that performance comes, your muscles know the song better than you do.
But what happens when you don’t get better? What happens when you don’t improve?
People who suffer from depression often talk about a kind of mental paralysis—a fog that descends, a miasma of the heart that settles into life and will not go away.
Sometimes I see my body like that. This is not really accurate—my physical problems are few. Balance issues. Muscle problems. A lazy eye that bothers me whenever I catch it in pictures. An increased awareness of pain as I grow older—feet that hurt when I wake in the morning, a lower back that always aches. Exhaustion that comes with no warning at all. Words that are sometimes difficult to say.
No future, really, in a dance class.
A year or so ago, I spent a weekend in Muskoka with a friend and sometime-lover, in a little log cabin that backed onto a lake. The path to the water was steep and rocky, littered with spindling trees. Because of my balance and unsteady feet, I could not walk upright. Instead, I crawled down backward on my hands and feet. I couldn’t stop the shaking of my knees.
My friend was patient and kind, and still, I’m embarrassed. When I think on it now, I flush with shame—the same flush that happens when I see videos of myself speaking and recognize the strange contours of a mouth that sometimes has trouble forming words. When I catch my loping, uneven gait late at night after an active day. When I look at my lopsided hips in the mirror.
Self-pity: pity for oneself, especially a self-indulgent attitude in regard to one’s own hardships and difficulties. Colloquial equivalent: to cry in one’s beer.
Oddly enough, the diagnosis of CP was what got me into dance in the first place. My doctor recommended an extensive exercise regimen, and so as soon as I’d recovered from surgery, my mother signed me up for all manner of classes. Ballet. Jazz. Tap. Gymnastics. I even took a modeling class. But balance was a struggle, and ballet was horrendous. My right foot would not turn out no matter how much I forced it. Forty-five degrees, that’s the farthest it would go. My bones had healed but there I was, trying to leap across the stage and feeling more of a failure than ever.
I still dream of the dance floor. At night, in bed with my throbbing feet, I think about pliés and jetés and imagine what it would be like to have a body that obeys. To stand upright without hurting. If someone were to come today and offer me a dancer’s legs in exchange for my pen, I think I would do it. Take my pen and ink, my scars, my twisted foot. And give me, instead, graceful wrists and ankles that turn wherever I want them to go.
Except that’s a lie, of course. My mother put me in ballet; I reached for that pen on my own.
In grade one, I have a substitute teacher, Mrs. Marchesan, who doesn’t listen when I plead fatigue to get out of gym. She does not give me extra time to get my coat, to get the outside boot over my cast when everyone goes out for recess.
“There’s no reason for you to be late,” she says. “You’re a smart girl. I don’t want anyone to give you sympathy.”
Predictably, I do not like her. It takes years before I recognize the gift she tried to give me. Later, in high school, when my new gym teacher asks me why I’m limping, I stare at the floor when I tell my story.
“That must have made you a really strong person,” she says.
This makes me blush. I’m not that strong, I want to tell her. And anyway, it’s not such a big deal. I survived. That’s all that matters.
Recently, I’ve noticed that I’ve begun to walk with my feet turned in again. New shoes show signs of wear, even with the inserts. The doctors tell me this is because I hit the ground hard—because I walk like someone who has learned to move with muscles that don’t always pay attention. The slight circle of that right leg. The slap of that less-than-responsive right foot. These are called coping responses. The way the body picks up and compensates for a lack of proper motion. Evolution on the ground, so to speak.
A small child learns she won’t be able to dance across that stage, not the way she might want. Instead she finds rhythm in her letters, in the way that this letter paired with that letter makes a kind of music on the page and on the tongue.
“Perhaps,” muses the poet Patrick Friesen, “this is true for all artists; you work at your second-favorite art form.”
And again: “[I]f this is true, one should be able to spot the foundation of the favorite form within the art one is engaged in.”
And again: “Motion has always been at the core of what I do with words, and often this motion takes a musical direction…It means working with pacing. And it means speaking from the body instead of from the head.”
What does that mean, to speak from the body? More specifically, what does it mean to speak from a body such as mine? The spectre of that long-ago boy who referred to my utmost concentration in lindy hop came up in every dance class I thought to take over the next few years. The year after that first lindy hop class I joined another, and also left. I joined salsa classes in St. Andrews, Scotland, when I went away for grad school, and eventually left those classes too. While living in Edinburgh, I advertised for and found a swing-dance partner who was patient and kind and perfectly willing to spend hours helping me stumble through my mistakes—I got excited about the dancing for a while, and then stopped scheduling sessions. (I signed up for more classes when I moved home to Canada, and left those ones, too, as soon as I found a viable excuse.) I was never going to be good enough. I was never going to be the dancer that I wanted to be, and so I stopped. Again and again and again.
This seems like a silly reason now. But sometimes it’s the silly, small decisions that have the greatest power. Instead of dancing, I sat down and wrote about dancing. Instead of doing, I sat down and dreamed.
Cerebral: of or relating to the brain. Palsy: muscle paralysis, or the inability to act.
Literally, when looked at in one light, a brain that paralyzes the body.
In grade school and high school, the thought of being late for something instills in me a kind of frozen panic. If I am running for the bus or hurrying to class, my throat chokes up and my legs grow heavy, and it’s all I can do to keep standing. When I do move, finally, the shock of movement in the midst of all that fear gives me an orgasm. I don’t know enough to call it an orgasm, at least for the first few early years—I know only that the sudden rush of power through my pelvis is exhilarating and draining all at the same time. I know only that it doesn’t feel like power—it feels like letting go.
This stops happening after high school, after I decide that the panic of potentially being late is no longer worth it. I do not want orgasms, at least not this way—I want to be on time. I want to be perfect. Stay focused, Amanda, and you’ll rise above whatever it is that might seek to freeze you, or block your way. You’ll find a way to work around the limitations of your body.
And those orgasms—the ones that used to catch you unawares? What of them? Why bother thinking wistfully about those bright, uncontrolled moments in childhood, or those hours of abandon twirling on your carpet when no one else could see? Ultimately, they brought you nothing. Your brain has brought you everything, except for dance class, and in the end that doesn’t matter. Why long for the surprises of the body when it’s mostly words and the mind that defines you? You don’t want your body to surprise—you want to rise above it.
Your brain is a gift that breaks you out of prison. Your brain is not a jailer.
So don’t bother thinking, late at night, about dancing on that stage. This is useless. Unproductive. Ungrateful, even. Your life has taught you that it is dangerous to let go, to want something so badly that at times you cannot breathe. Your body is unpredictable—it has taught you only that the mind can be better, go farther, bring more. You have arms and legs and a heart that can bring you enough.
The mind—the words, the sentence—this is not your second art form. It is your first. It has always been your first. Why bother grieving?
You don’t need your body. You’re safe inside your head now—safe, cocooned, afraid. You can move it all to memory now. You can leave it all behind.
Rumpus original art by Clare Nauman.