For years, the poet and author tried to keep her cerebral palsy secret, until motherhood and a new love taught her to make peace with her body and share her experience.
Ona Gritz, The Guardian 30 Apr 2017
There are ways to cover for the fact that you can’t run like the other kids, or skate, or climb fences, or ride your flowered banana seat bike without training wheels.
My own strategy was to suggest alternatives, offering to bring out a board game, colouring books and crayons, or my brand new, unopened jigsaw puzzle with the picture of a farm scene on its box. If my friends countered by asking to play hopscotch, a game that would require each of us to stand first on one foot, which I could do fine, then on the other, which I couldn’t do at all, I’d act like the idea was too dull to consider. If they suggested we play cards, I’d say yes, but reluctantly, willing someone else to insist on shuffling since it takes two good hands to bend and riffle each half of the deck. More often I told them, truthfully, that I’d rather grab our dolls and play house or store or any other game of pretend.
Pretending, after all, was the thing I was best at. It was the magic that allowed me to inhabit any capable, agile, graceful body I chose.
In our crowded box of curled family photos there is only one picture that includes the leg brace I was made to wear because of my cerebral palsy, though even here it is barely visible. A slight bulge beneath the fabric of my pants, a hint of metal peeking from the hem, the single angled strap that attached it to my shoe. I’m three years old in the photo, the same age I was the first time I held it in my hand. “Oh,” I said. I’d seen posters for the March of Dimes with images of children leaning on crutches or sitting in wheelchairs, and now I saw that I was like them in some way. This struck me as nothing more than an ordinary fact. “Oh.”
Shortly after that picture was taken, my doctor decided I only needed to wear the brace in bed at night. Daytimes, it lived in the back of my closet, tucked in a brown paper grocery sack. My mother allowed me to leave it home whenever I slept at a friend’s house, or in its hiding place when a friend slept at mine. Maybe this was how I got the idea that my cerebral palsy could and should be kept secret. This, coupled with the fact that my father never mentioned it, and that my mother, when she did discuss it, said, “It’s nothing, hardly noticeable”, dismissively waving her hand. To me, my body was simply my body, the only one I’d known, and so I thought the brace was my disability. As long as I kept it out of sight, I fitted in with my friends.
“Let’s pretend we walk like people who limp,” Lisa Lowenstein suggested one muggy afternoon in our sixth summer. She slid off the stoop and began hobbling in a circle, and though the game made me uneasy, I got up and did my best to imitate her awkward moves.
Lisa paused to observe me. “Just walk like you always do,” she advised. “You walk like people who limp.”
“Oh,” I said, just as I had when I first saw the photo where I’m wearing my brace. Only this time my throat tightened around the word.
In middle school, I found it helped to carry novels in my backpack. That way, if my friends decided to pay handball at the park or zip around the neighbourhood on their 10 speeds, I could pull out my book and say, “I’m too caught up in this right now”, which, soon enough, would be true.
I also got good at finding the girls who were happy to sit inside, listening to records, and the few left who, like me, were slow to give up Barbies and other daydreaming kinds of games.
“What do you want to do?” Jody might ask me.
“I don’t know. You?”
“I don’t know.”
“Rock star wives?” one of us would finally ask, sighing like it was a last resort.
After that we’d play for hours, immersed in the elaborate stories we created for Elton, Paul and beautiful grownup versions of ourselves.
Still, the next time Jody and I got together, whoever asked would be tentative about it, afraid the other would be the first to outgrow the game.
By high school, pretend games were no longer an option, unless you count pretending to have my period so I could sit on the sidelines in gym class. Or claiming to be too behind in homework to join my friends at the ice rink. Or acting as though my dislike of disco was the only reason I stood pressed against the wall at dances while the other girls mastered those perfectly synchronised steps.
“Why don’t we go to the movies?” I was always the one to suggest. There, in the comforting darkness, all I had to do was sit perfectly still, along with everyone around me. Row by row by row, we imagined together, lost in the drama of fictitious lives. The movies offered a means of playing pretend that was still sanctioned, a way to be social that asked nothing of my faulty limbs.
For college I chose a small, artsy school where the only team sport offered was Ultimate Frisbee and there were signs posted on the bulletin boards throughout campus that proclaimed It’s Okay to be Gay. I extrapolated from this that here, in this heady oasis, it was OK to be different. Among my classmates were girls with unshaven legs, boys who wore lipstick, kids of both genders with spiky magenta hair and splatters of safety pins on their clothes. Still, while I admired these outliers for their boldness and originality, I hid my uneven legs under long gauzy skirts in my usual attempt to blend in.
If my new classmates noticed my limp, or my childhood friends had seen through my excuses, they were kind enough not to say so. This allowed me to believe my own fabrications. I see it now as a wilful and instantaneous form of amnesia. As soon as I succeeded in avoiding a physical challenge or a potentially embarrassing moment, the memory, along with any thoughts about my disability, dispersed.
Even so, as I settled in at college, an unnamed tension left me. I now lived in a place where I could curl up with my books hour after hour, not because my friends were off having adventures I couldn’t keep up with, but because this was the adventure. I majored in literature and had plans to become a writer. As I read and honed my craft, it felt as though the body, my body, with its limits and awkwardness, was the least of who I was. Finally, I could live the life of the mind. How perfect was that? Except, of course, it was only part of the story.
One afternoon in the campus library, I highlighted this line in my slim paperback copy of Virginia Woolf’s A Room of One’s Own:
“Women have served all these centuries as looking glasses possessing the magic and delicious power of reflecting the figure of man at twice its natural size.”
I marked the sentence, having brushed past and already forgotten this, from earlier in the same chapter, about the fact that so many men have written books about women:
“…it was flattering, vaguely, to feel oneself the object of such attention provided that it was not entirely bestowed by the crippled and the infirm…”
Had I, a 19-year-old crippled girl, flinched when I read this? Had it stung? I don’t know. I’d forgotten those words existed, and only discovered them now, decades later, while searching for the looking glass quote that has stayed with me all this time. This was precisely how my self-protective amnesia worked. Virginia Woolf devalued people like me in a chapter about the importance of confidence? But I loved Virginia Woolf, so the insult quietly left through some back door in my mind.
What did interest me that afternoon was the metaphor of the mirror, and the idea that men used us to build themselves up. I’d recently joined a feminist consciousness-raising group, and had begun insisting, sometimes petulantly, that I be referred to as a woman rather than a girl. When I marked Woolf’s words it was because they struck me as poetic and true. What I couldn’t yet see was that I had begun to use men similarly, not to reflect me at twice my natural size but as attractive enough. As OK.
This is where my college life wasn’t all disembodied intellect. I had also begun seeking validation through sex.
Here is another truth. I wasn’t at all beyond the prejudices expressed in Woolf’s forgotten passage. The young men I pursued had to be not just smart, creative and interesting, but handsome too. It went without saying that they were also able-bodied. Everyone I knew was able-bodied. There may have been a handful of other students with disabilities on campus, but I paid them no mind.
I chose men for the wrong reasons and, in turn, none of them chose me for anything more than an occasional intimate night. Then, when I was 25, I met Richard. He was athletic and handsome in the way of the popular boys who were completely out of my league in high school. The two of us had very little in common. Richard’s passions included skiing and mountain biking, and though I could never join him on either terrain, he was passionate about me too.
Richard was earnest, playful and affectionate. He was also hot-tempered and impossible to please. Nonetheless, I invited him to move into my apartment. Soon after, we got engaged. All the while, my friends looked on warily.
One friend told me she had always imagined that the man I’d wind up with would be someone she found amazing.
“Someone smart and really kind. The type of guy I’d love for myself, only I’d be so happy for you I wouldn’t be jealous.”
She watched me carefully and I realised that her comment had not just one subtext, but two. First, and most obvious, Richard, who was more conventional and less intellectual than my previous love interests, didn’t meet her expectations. Worse, it seemed she’d always believed that only someone amazing and really kind could possibly choose me. What hung in the air, unspoken between us, was the reason she thought it would take such a remarkable person to love me. I was defective. This made me cling to my handsome boyfriend all the more.
One weekend, while Richard was off mountain biking with friends, I decided to spend an afternoon in the city. After a movie and lunch at a cafe, I found myself following a strange woman down a winding street.
Is that what I look like? I wondered, carefully studying her from a distance. She’s pretty enough, but how much does her limp detract from that?
Over the following weeks and months, for the better part of a year, I kept an eye out for women with physical disabilities. When I found them, I trailed them. For a while, my curiosity remained on the surface. Could women who moved like me still be considered attractive? Did I find them so? But as I continued my stalkerish experiment, something shifted. I began to want to know about their lives.
The best way I knew to process this, as with most issues I grappled with, was through writing. Alone at my desk, I entered into a kind of dialogue with these strangers I was too reticent to approach in person. I did this by writing a poem in the voice of a nonverbal quadriplegic woman who was in the news at the time.
By now I had completed an MFA in creative writing and had found my place in a community of poets. One winter afternoon, I ran into an acquaintance who invited me to take part in a poetry reading and panel discussion for Women’s History Month. Each participant would be from a different cultural background, she explained. She’d already lined up an African American poet, a Latina poet, and she wanted me there to represent disability. My initial response was to take a step back when she said this. But then I felt a stirring of interest.
“I’ll be there,” I heard myself say.
I had the persona poem, and one about my mother helping me on with my nightbrace, and a third, titled What the Mirror Knows, that used my partial disability as a symbol for other ways I felt divided. At the reading, I surrounded these pieces with poems that made no mention of disability and that, to my mind, proved I led a perfectly normal and interesting life.
The panel discussion ended with questions and comments from the audience. There was one woman, seated a few rows back, whose insights caught my attention. She referred to writers I loved, and made connections that surprised and intrigued me. Afterwards, as I was gathering my things, I looked up to find her waiting to talk to me.
“I really liked your poems.”
“Thanks. I liked hearing what you had to say.”
We smiled shyly at each other. “Well,” she said, “I should probably use the bathroom before I head home.”
It wasn’t until the woman, who had introduced herself to me as Hope, started to walk away that I noticed her palsied gait. What could I do but follow her into the restroom?
Cerebral palsy is caused by damage, most often at birth, to a part of the brain that controls motor skills. There are various forms, and it affects people to widely differing degrees. Many don’t have enough balance to walk or need crutches to do so. Some have uncontrollable tremors. Some are intellectually disabled, while others are assumed to be because their facial muscles are affected and their speech is unclear.
Hope and I both have relatively mild cases and forms of the disability that affect only half our bodies. She has diplegia, which means the palsy is just in her legs. I have hemiplegia, which means the split is vertical. The muscles of my right limbs are tight and underdeveloped, and the fingers of that hand lack the dexterity, tactile sensitivity and fine motor skills of those on the left.
“It’s lucky she’s left-handed,” a doctor once told my parents during a consultation, “since she’ll always have to depend on that side.” I was nine at the time, old enough to resent being spoken about in the third person, and also to see the flaw in his logic. Maybe I was born left-handed, maybe not. The body learns to compensate, just like the mind.
Years later, I read an article suggesting that right hemiplegics are likely to be more creative and less practical than our counterparts whose disability is manifested on the left. The hypothesis is based on left /right brain differences. Left hemiplegics have undamaged left hemispheres, which is where pragmatism lives. Meanwhile, we right hemiplegics need to rely on our intact arty and imaginative right hemispheres.
The theory appealed to me. It fitted me so well. But then, just as I understood at nine years old, when it comes to cause and effect it’s hard to assess the true order. Certainly, my cerebral palsy and my drifty, daydreaming ways are connected. But to what extent is this due to the physical brain as opposed to the simple desire to escape the confines of a limited and disappointing body by imagining it away?
Hope and I spent several hours in a coffee shop that late afternoon, commiserating about what it felt like for each of us to be the one kid on the block who couldn’t run, climb fences, or ride a bike without training wheels. I learned I wasn’t the only one who coped by making excuses, hiding behind books, and living too much in my head. This was the first time either of us had ever spoken about these experiences. It was also the first time that I could remember when I wasn’t expending effort and energy to pretend my cerebral palsy didn’t exist.
While Hope took the fuel of our connection and almost immediately got involved in disability activism, I went home to Richard and my belief that his love for me meant that my cerebral palsy was, as my mother had assured me all those years ago, nothing, hardly noticeable.
A few months later, Richard and I married. With Hope now in my life, I had a growing consciousness about disability that came close to acceptance, but it was a place I visited, not yet one where I lived. More real to me was my marriage licence, which I saw as a kind of passport. It proved that where I really belonged was in the enviable world of the unscathed.
Something I had wanted since I was a child trying to coax my friends away from their games of hopscotch and tag to play house with me was to one day be a mother. Six years into our marriage, Richard and I agreed the time was right.
Through my pregnancy, my midwife never once mentioned my cerebral palsy, so neither did I. She did suggest a number of tests to rule out potential birth defects. Always I declined, feeling vaguely insulted, though I couldn’t have said why.
The daily and very physical tasks of caring for a baby forced me to recognise my disability for what it actually was
Our son Ethan was perfect: seven-and-a-half pounds, 14 inches, with active limbs, the right amount of digits, and a hearty cry. For the first hours after his birth, Richard and I sat together in the hospital room and stared at him in wonder. Eventually, a nurse came in to help me with breastfeeding.
“You need to lift your elbow so his head sits a little higher. Not working? How about we try the other side? Can you shift him so he’s in a better position? Let me show you something called the football hold…”
Nothing we tried worked so she brought in another nurse and then a third. They piled cushions around us until I could finally hold Ethan at the right angle and height.
“There we go,” the nurses said once he began to suckle.
“Problem solved,” Richard put in.
This tiny new person nuzzling at my breast depended on me. Yet, somehow, as I’d drifted through my pregnancy, daydreaming as usual, it had never occurred to me that I wouldn’t be able to meet his needs. Now, as I touched his cheek with the one hand that could really feel him, I understood that I didn’t have the balance or coordination to be this fragile, trusting person’s mom. I may have learned early in life to cover for being unable to run, skate or climb fences, but there would be no covering for being unable to safely bathe a newborn, carry him on stairs, or walk any distance while he flailed in my arms.
From that moment on, the daily and very physical tasks of caring for a baby forced me to recognise my disability for what it actually was. A set of very real and specific limitations I had to either work with or around. There were constant puzzles to solve, along the lines of, I’ve arrived home with a baby and a bag of groceries in his carriage and now I find that the one elevator in our apartment building has broken down. What do I do? Often the only answer was to ask for help from a neighbour. The first few times I did so, I stammered and felt myself flush. Then one day I simply stopped feeling apologetic. So, I had a disability. It was what it was.
Meanwhile, Ethan had begun reaching his perfect pudgy little arms towards me the moment we were together in a room. His absolute acceptance, despite my funny walk and clumsy touch, struck me as both lovely and familiar. It reminded me of my three-year-old self, noticing my brace in a photo without judgment.
It’s tempting to end the story here with the happy ending of a renewed self-acceptance. I would, except it gets even better.
It’s neither a surprise nor a tragedy that my marriage to Richard ended when Ethan was still small. Richard remains active in Ethan’s life and the divorce proved to be the best choice for us all.
One holiday weekend, when Ethan was eight, he stayed at Richard’s while I went to a writers’ retreat. There, in a poetry workshop, I sat beside a man named Dan, who had a soft-spoken gentle manner and, I could tell from his responses to poems, an incisive mind. When he brought out his own poem to be critiqued, I liked him even more. His piece had rhythm, wit and heart. This was definitely someone I wanted to know.
I watched him read and take notes by tapping on a braille laptop, his guide dog sprawled at his feet. After the workshop ended we stayed in our seats an extra few minutes talking, then he slipped his hand into the crook of my elbow, and we strolled together to the next event. I wondered if he noticed the lilt in my walk, and actually hoped he did. I wanted Dan to know that, along with poetry, disability was something we shared.
A week later, Dan called me and we stayed on the phone for four hours. In many ways, it was like my first conversation with Hope in the coffee shop. We were so happy to share our stories with each other, and while, in this case, the details of our disabilities bore no resemblance, when I talked about the long and circuitous road I took to making peace with mine, he let me know he’d been there too.
Still, I thought about how, as a young woman, I’d considered my disability a cosmetic flaw, akin to having a bad complexion or being a bit overweight. My concern had been whether people noticed. Now, it occurred to me what an indulgence that was. Born blind, Dan never had the luxury to pretend.
When we met, Dan and I lived a hundred miles apart. This meant we only got to be together on weekends. The rest of the week, we talked on the phone, building our relationship on a foundation of ideas and conversation. From the start, I was captivated by how smart he was, and by how intently he listened. Of course Dan listens well. Hearing is the sense he relies on the most. But I’d never met a man who did so with such presence and interest, and somehow I knew that this had more to do with who he was and what he valued than with the fact that he was blind.
Long before Dan and I got to know each other, he’d begun to write beautifully and candidly about his life as a blind man. He also had a community of friends who were writers and artists with disabilities. I wanted in, and they embraced me without hesitation. Soon, I began to seriously take on disability as a subject in my work. It felt scary at first, a little like pulling my childhood brace out of the closet and putting it on display. But I had spent more than enough time hiding and pretending. I wrote as truthfully as I could about how it felt to live in my particular body, which allowed me to see how universal my experiences actually were.
Dan and I were married on a bright, breezy day in June. Hope slept on our couch on the nights bracketing our wedding day. Ethan stood with us at the altar, holding my palsied hand.
We have been together for 12 years now. The work we do includes disability awareness presentations, literary readings and panel discussions about disability poetics. During one such event at a large poetry festival, a member of the audience, a man with a visibly awkward gait, took the microphone during the Q&A portion and asked in a shaky voice, “How did you learn to like yourselves?”
There were four of us up on the stage and for a long moment we were silent, touched by the vulnerability in the question. I thought of Hope who’d approached me after hearing my first tentative poems about disability. I thought of Dan and our community of disabled friends, including those with us up on that stage. It struck me that, in some way, we were each a pleasing and accurate mirror for the others.
“Do you like us?” I asked.
The man nodded.
“Well, that’s a start.”
|Ona Gritz is the author, most recently, of On the Whole: A Story of Mothering and Disability (Shebooks, 2014) and the poetry collection Geode, which was a finalist for the 2013 Main Street Rag poetry book award. Her essay, It’s Time, which appears in the Rumpus, was named a Notable Essay in Best American Essays, 2016|
Source The Guardian