Ona Gritz: ‘I had expended more than enough time concealing and pretending’

For years, the poet and author tried to keep her cerebral palsy secret. Then motherhood and a new love taught her to make peace with her body

There are ways to cover for the fact that you cant run like the other children, or skate, or climb fencings, or ride your flowered banana seat bike without educate wheels. My own strategy was to suggest alternatives, offering to bring out a board game, colouring volumes 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 couldnt do at all, Id act like the idea was too dull to hold. If they suggested we play cards, Id 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 Id instead 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 sorcery that allowed me to occupy any capable, agile, graceful body I chose.

In our mobbed box of curled family photos there is only one picture that includes the leg bracing I was made to wear because of my cerebral palsy, though even here it is barely visible. A slight protrusion beneath the fabric of my pants, a hint of metal peeking from the hem, the single angled strap that attached it to my shoe. Im three years old in the photo, the same age I was the first time I held it in my hand. Oh, I said. Id watched posters for the March of Dimes with images of children leaning on crutches or sitting in wheelchairs, and now I assured 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 bracing in bed at night. Daytimes, it lived in the back of my closet, tucked in a brown paper grocery bag. My mother let me to leave it home whenever I slept at a friends house, or in its hiding place when a friend sleep 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, Its nothing, hardly noticeable, dismissively waving her hand. To me, my body was simply my body, the only one Id 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.

Lets feign 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 constructed me uneasy, I get 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 Im wearing my bracing. Merely this time my throat tightened around the word.

In middle school, I detected it helped to carry fictions in my backpack. That way, if my friends decided to pay handball at the park or zip around the neighborhood on their 10 speeds, I could pull out my volume and say, Im too caught up in this right now, which, soon enough, would be true.

I also get 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 various kinds of games.

Ona,
Ona, aged three, with the leg bracing she had to wear.

What do you want to do? Jody might ask me.

I dont know. You?

I dont know.

Rock star spouses? one of us would eventually ask, sighing like it was a last resort.

I guess.

After that marriage play for hours, immersed in the elaborate narratives 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 “wouldve been” 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 antipathy of disco was the only reason I stood pressed against the wall at dances while the other girls mastered those perfectly synchronised steps.

Why dont we go to the movies? I was always the one to indicate. 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 legs.

For college I selected a small, artsy school where the only squad athletic offered was Ultimate Frisbee and there were signs posted on the bulletin board throughout campus that proclaimed Its Okay to be Gay. I extrapolated from this that here, in this heady oasis, it was OK to be different. Among my classmates were daughters with unshaven legs, boys who wore lipstick, children 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 conceal 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 considered through my excuses, the latter are kind enough not to say so. This allowed me to believe my own fabrications. I see it now as a wilful and instantaneous sort of amnesia. As soon as I succeeded in avoiding a physical challenge or a potentially embarrassing moment, the memory, along with any guess about my disability, scattered.

The
The young Ona: If my new classmates noticed my limp, the latter are kind enough not to say so. Photo: Leonard Gritz

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 couldnt keep abreast with, but because this was the escapade. 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. Eventually, I could live the life of the mind. How perfect was that? Except, of course, it was only part of the narrative.

One afternoon in the campus library, I highlighted this line in my slim paperback transcript of Virginia Woolfs A Room of Ones Own :

Women have served all these centuries as looking glasses possessing the sorcery and delicious power of reflecting the figure of human 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 females:

…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 dont know. Id forgotten those terms existed, and merely detected 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 ran. 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.

Ona
Ona at home: A verse workshop, I sat beside a human named Dan. Photo: Gene Smirnov for the Observer

What did interest me that afternoon was the metaphor of the mirror, and the idea that humen utilized us to construct themselves up. Id 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 Woolfs terms it was because they struck me as poetic and true. What I couldnt yet watch was that I had begun to use men similarly , not to reflect me at twice my natural sizing but as attractive enough. As OK.

This is where my college life wasnt all disembodied intellect. I had also begun seeking validation through sex.

Here is another truth. I wasnt at all beyond the racisms expressed in Woolfs forgotten passage. The young men I pursued had to be not just smart-alecky, creative and interesting, but handsome too. It ran 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 intellect.

I choice humen for the incorrect reasons and, in turn , none of them choice me for anything more than an occasional intimate night. Then, when I was 25, I gratified Richard. He was athletic and handsome in the way of the popular sons who were completely out of my league in high school. The two of us had very little in common. Richards 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 seemed on warily.

One friend told me she had always imagined that the man Id wind up with would be someone she found amazing.

Someone smart and actually kind. The type of guy Id love for myself, only Id be so happy for you I wouldnt be jealous.

She watched me carefully and I realised that her comment had not just one subtext, but two. First, and more obvious, Richard, who was more conventional and less intellectual than my previous love interests, didnt gratified her expectations. Worse, it seemed shed always believed that only person amazing and actually kind could possibly opt 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 built 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 observed myself following a strange woman down a meandering street.

Is that what I look like? I wondered, carefully studying her from a distance. Shes pretty enough, but how much does her hobble detract from that?

Over the following weeks and months, for the better part of a year, I maintained an eye out for women with physical disabilities. When I determined 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 route I knew to process this, as with most issues I grappled with, was through penning. Alone at my desk, I entered into a kind of the negotiations with these strangers I was too reticent to approach in person. I did this by writing a lyric in the voice of a nonverbal quadriplegic female who was in the news at the time.

By now I had completed an MFA in creative writing and had procured my place in a community of poets. One wintertime afternoon, I ran into an acquaintance who invited me to take part in a verse reading and panel discussion for Womens History Month. Each participant would be from a different culture background, she explained. Shed already lined up an African American poet, a Latina poet, and she wanted me there to represent disability. My initial reply was to take a step back when she said this. But then I felt a stirring of interest.

Ill 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 emblem for other styles I felt divided. At the reading, I surrounded these pieces with poems that built no mention of disability and that, to my mind, demonstrated I resulted a perfectly normal and interesting life.

The panel discussion ended with questions and comments from the audience. There was one girl, 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 one another. Well, she said, I was likely to use the bathroom before I head home.

It wasnt 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 abilities. There are various forms, and it affects people to widely differing degrees. Many dont 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 entails the palsy is only in her leg. I have hemiplegia, which entails the split is horizontal. The muscles of my right extremities are tight and underdeveloped, and the fingers of that hand lack the dexterity, tactile sensitivity and fine motor skills of those on the left.

Its luck shes left-handed, a doctor once told my parents during a consultation, since shell 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 find the flaw in his logic. Maybe I was born left-handed, maybe not. The body learns to compensate, just like the mind.

Years afterwards, 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 its hard to assess the true order. Surely, my cerebral palsy and my drifty, daydreaming styles 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 couldnt operate, climbing fencings, or ride a motorcycle without educate wheels. I learned I wasnt the only one who coped by making excuses, hiding behind volumes, 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 wasnt expending effort and energy to pretend my spastic paralysis didnt exist.

While Hope took the fuel of our connection and almost immediately got involved in disability activism, I went home to Richard and my notion that his love for me meant that my spastic paralysis was, as my mother had assured me all those years ago , nothing, hardly noticeable.

A few months later, Richard and I wedded. 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 insured 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 has become a mom. Six years into our marriage, Richard and I concurred 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 defect. Always I declined, feeling vaguely insulted, though I couldnt have said why.

Our son Ethan was perfect: seven-and-a-half pounds, 14 inches, with active extremities, the right amount of digits, and a hearty weep. 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 change him so hes in a better posture? Let me prove you something called the football hold

Nothing we tried run so she brought in another nurse and then a third. They piled cushions around us until I could ultimately hold Ethan at the right slant 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 Id floated through my pregnancy, daydreaming as usual, it had never occurred to me that I wouldnt 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 didnt have the balance or coordination to be this fragile, trusting people mama. 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 limbs.

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, Ive 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 neighbor. The first few periods I did so, I stammered and felt myself flush. Then the working 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 limbs towards me the moment we were together in a room. His absolute acceptance, despite my funny stroll 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.

Its tempting to aim the tale here with the happy ending of a renewed self-acceptance. I would, except it gets even better.

Its neither a surprise nor a misfortune that my marriage to Richard aimed when Ethan was still small. Richard remains active in Ethans life and the divorce provide proof the best choice for us all.

One holiday weekend, when Ethan was eight, he bided at Richards while I went to a novelists retreat. There, in a verse workshop, I sat beside a man named Dan, who had a soft-spoken gentle way and, I could tell from his responses to poems, an incisive mind. When he brought out his own lyric to be critiqued, I liked him even more. His piece had rhythm, humour and heart. This was definitely person I wanted to know.

I watched him read and take notes by tapping on a braille laptop, his guide puppy sprawled at his feet. After the workshop aimed 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 walking, and actually hoped he did. I wanted Dan to know that, along with verse, disability was something we shared.

A week afterward, Dan called me and we stayed on the phone for four hours. In many styles, 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 similarity, when I talked about the long and circuitous road I took to attaining peace with mine, he let me know hed been there too.

Still, I thought about how, as a young lady, Id 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 passed to me what an indulgence that was. Born blind, Dan never had the luxury to feign.

When we fulfilled, Dan and I lived a hundred miles apart. This entail 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 beginning, 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 Id 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 given the fact that he was blind.

Long before Dan and I got to know each other, hed begun to write beautifully and candidly about their own lives as a blind man. He also had a community of friends who were writers and artists with physical disabilities. I wanted in, and they embraced me without hesitation. Soon, I began to seriously take on disability as a topic in my work. It felt scary at first, a little like pulling my childhood bracing out of the closet and putting it on display. But I had expended more than enough time concealing and feigning. 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 reads and panel discussions about disability poetics. During one such event at a large poetry celebration, 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 whod approached me after hearing my first tentative lyrics 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 manner, “were in” each a pleasing and accurate mirror for the others.

Do you like us? I asked.

The man nodded.

Well, thats 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, Its Time, which appears in the Rumpus, was named a Notable Essay in Best American Essays, 2016

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