Finding Myself on Page

October 5, 2017

Ona Gritz is the author of the memoir “On the Whole: A Story of Mothering and Disability,” and the poetry collections “Geode” and “Border Songs: A Conversation in Poems,” written with Daniel Simpson. In this essay for the New York Times, Gritz shares how she learned to accept her disability and it’s evolving narrative through writing.

One morning in my 18th summer, the guy I thought I loved stopped by to invite my roommates and me to pick apricots from the tree he’d discovered behind the Boulder Public Library. Five of us gathered paper grocery sacks and trooped over, marveling that in the several weeks we’d all been in town, studying poetry at Naropa Institute, none of us had noticed the fruit tree. Actually, the others marveled and I pretended to. Growing up in Queens, N.Y., the only apricots I’d seen came dried and flattened into sticky sheets on paper backing my mother bought in rolls.

My friends that summer were all older, worldlier and better read than I. Happily, I slipped into the role they offered — protégé and favored little sister. They critiqued my poems and presented me with reading lists. The women among them gave me relationship advice, but we hadn’t discussed what had happened the night before at a classmate’s backyard party: Rich had finally kissed me.

“Catch,” he called now from atop the tree and tossed down what looked like miniature peaches. I lifted my Indian print skirt to form a net as two thoughts vied for my attention. Maybe he could love me. I need to write about this.

Nothing ever came of my infatuation with Rich. Nor did anything come of my attempts to capture that perfect summer morning in a poem, despite that, to my teenage sensibilities, it had all the right ingredients. Longing, hope, a cute guy with a twisted front tooth, those apricots dropping softly.

Click to watch Guy Fried, MD, explain how people can develop the mental flexibility to shift their dreams after SCI.

The problem was that I didn’t have much to say about the experience other than that it felt important to me. Then one day, more than 20 years later, an image came to me of my younger self poised beneath that tree and I realized what was missing from those early drafts. My cerebral palsy.

Back on that July morning in 1981, the moment my crush told my new friends and me of his finding, my mind raced. I’d stay in my impractical, wraparound skirt. This would give me an excuse to wait below while the others, dressed in shorts and sneakers, performed the impossible feat of climbing the tree. Once there, I made another split-second decision to lift my skirt and expose my mismatched calves. It was either that or admit that I couldn’t catch anything more challenging than a balloon in my clumsy hands.

Calculations of this kind were second nature to me. By the time I had language, I’d made an unspoken pact with nearly everyone I encountered. I won’t talk about my body’s awkwardness and limitations and neither will you.

“What happened to your leg?”

I hated when the pact was broken with questions like that. In grade school, I usually went with the clipped but accurate “Nothing.” After all, whatever caused my cerebral palsy occurred long before, during my birth. Also, it didn’t happen to my leg, but to the part of my brain that tells that leg to move.

Once, in sixth grade, a friend whispered that another classmate posed the question to her.

“I said you fell off the Empire State Building.”

“And she believed you?”

“I don’t know, but she changed the subject.”

After that, I told that 1,250-foot tall tale a few times myself. Though I’d stolen it, it seemed like a more original and interesting version of my other standby, “None of your beeswax.”

My form of cerebral palsy, right hemiplegia, includes among its symptoms numbness along one side of my body. When, at 5 years old, I asked my own first question about it, “Why do I feel more on the left?” my mother had an answer ready. Only it wasn’t an answer at all.

 “Because your heart is on the left,” she said. “Like everyone’s.”

This memory is clear to me, but there must have been times before that when my parents talked to me about my disability. After all, I knew what I had and what it was called. Cerebral, a long C word like “carnival.” Palsy, which sounded a little like “pansy.” My disability had a nickname, C.P., and it was why I had to wear a leg brace to bed and visit a physical therapist once a month at a place my parents referred to as the Center.

“It’s nothing, barely noticeable,” my mother assured me as she helped me with my leg brace at night. I knew she was right, at least compared with some of the kids I saw at the Center whose C.P. was so bad they made strange grunts when they tried to talk and couldn’t walk at all. At the same time, I knew we were alike, those kids and I, in some deep, undeniable way. The only thing that separated us was luck, a tiny L word that, like “life” and “love,” was somehow big enough to make all the difference in the world.

As a child trying to understand something about living in my body and in our community, neither of my mother’s explanations was of much use. I don’t say this to fault my mother. She grew up, as most of us did, being told not to point or to stare or to ask questions when it came to ways that people differ. This is where that pact of silence originates, from our attempt to be thoughtful and careful with one another. Now more than ever, while the emotionally delayed bully who inhabits our highest office models baiting, cruelty and mockery instead, every attempt at kindness is essential.

But where does that leave me, and others like me, as we tiptoe around the sensitive subject of our otherness? For a long time, I felt unsure not only of how to talk about my disability but even how to think about it. Its meaning was slippery and ever-changing. When I was little it meant I couldn’t roller skate or run like the other kids. In my teens and early 20s, it was the flaw that made me less attractive than my friends. When, at 25, I became involved with a handsome, able, but very difficult man, disability was the scrim through which he looked like my one chance at love.

We married and had a child, and as I struggled with the physically demanding tasks involved in caring for a newborn, my disability revealed itself for what it was all along — a set of specific limitations that required modifications, creativity and, more often than I was comfortable with, that I ask for help. That first year of parenting was among the hardest I’ve lived through, and the most humbling. At the same time, it was what finally led me into an authentic relationship with my body, one based on what I needed to accomplish rather than how I was perceived.

Through it all, I was writing. But it would be several more years before I began to explore disability in my work.

What am I trying to say? What is this poem, essay, chapter about? What details belong in the piece and what’s extraneous? These are among the questions all writers ask ourselves as we stare at the blinking cursors on our computer screens. When it comes to how relevant my cerebral palsy is to a given piece, the question can seem even more complex.

“Would I have to be disabled on every page?” I asked a friend who is also a literary agent when she suggested I write a memoir on mothering with a disability. The question, in its muddled state, made us laugh. But what I was trying to ascertain was whether the narrator — the “me” on the page — had to be thinking about cerebral palsy in every scene of her story when, in life, this was far from true.

Over time I discovered a more useful line of inquiry as I wrote. Would details about my disability not only expand this passage but also deepen it? Would they bring forth something I’d yet to articulate, perhaps didn’t even know I knew?

The page is where I finally came to understand my own body and its evolving narrative, where I continue to learn when my disability informs a particular dynamic and when it’s beside the point.

Eventually, I rewrote the poem about the morning of the apricots, and it was only then that I realized how lonely I’d been, even among friends I nearly worshiped. After all, there was this important aspect not just of my experience, but of my very being, that I didn’t think I could share with anyone.

“Do something with your brokenness,” David Hernandez urges in his poem “Sincerely the Sky.”

It’s a call to all of us, since everyone is broken in places if we’re to tell the whole story. And especially in these factious times, telling the whole of our stories, whether on the page or in the flesh, gives us the best chance we have to truly connect.

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