Capable

Meet Kerry. She writes over at Transcending CP, and I asked her to write for Sisterwives because she has SO MUCH to teach. Since I found her blog via a mutual friend, I’ve been hooked. She writes incredibly well, in such a gentle way that even the difficult things are somehow rendered palatable – nay, beautiful – by her style. And difficult things they are indeed, for she lives with Cerebral Palsy, and it brings its battles to her every. single. day. And she rises to the challenge, and makes it through, every. single. day. She is stronger and more resilient than almost anyone I know, and I KNOW that her life – her words – are a lesson to us all. It is my honour and delight to feature her here – Lizzi.  

We are Capable

Why are you making me do this?” I said, partly out of frustration and partly because a four-year-old’s brain is biologically wired to ask at least one question every ten minutes.

I was four years old, fighting the tremors that shook my legs as I tried to move them according to the physical therapist’s instructions.

My therapist’s response was curt, four words that have stayed with me forever:

            “Because you can’t run.”

A few days later, my dad was reading the newspaper by the window in the kitchen when he looked up for a moment and saw me in the backyard, alone. He stepped outside and called to me.

“What are you doing?”

I tumbled to the ground, leapt to my feet, brushed myself off, and met his eyes.

“I’m running,” I said, as if it was the most obvious thing in the world.

He studied me, watching silently from the doorway, and then:

“Mind if I join you?”

He took my hand in his, and together we ran.

~

At five years old, I announced to my mom and dad that I wanted nothing more than to be a ballerina.

Some parents might have doubted the little girl who stood in the doorway sporting a frilly pink tutu, whose knees pressed together when she stood, whose muscles were tight and unforgiving, whose balance was practically nonexistent.

“Haven’t you noticed?” they might have said. “Ballerinas need to be flexible and graceful, and you can’t even straighten your legs all the way. You can hardly stand in place without falling. You could never be a ballerina.”

But my parents just smiled at the little girl whose dreams defied her disability.

“You’re the best ballerina I’ve ever seen,” my dad said, and they signed me up for lessons.

~

While I didn’t exactly fit the profile of a typical ballerina, the same could be said for my ballet instructor, Miss Anna. She was large in every sense of the word, the tallest woman I had ever seen, and her voice complemented her domineering height. Every time she spoke, her voice boomed as if she was using a megaphone.

Everything about her terrified me, and yet I pulled on my ballet slippers each week with quiet enthusiasm because Miss Anna differed from most of the other people that I had encountered outside of my family: she believed in me.

Whenever I fell, she snapped her fingers and ordered me back on my feet. There was no pity in her voice, no panic that I might be hurt. Some of the other parents were concerned that she was insensitive to my disability, but her attitude was precisely why I enjoyed my lessons. For the first time in my life, I wasn’t the fragile little girl with brain damage who was to be coddled.       I was me.

Perhaps even more important than her attitude, however, was her understanding. Miss Anna understood something that seemed to be beyond the comprehension of many medical professionals: compensating. While she expected me to keep up with my classmates, Miss Anna allowed me to make adjustments to ensure that I was successful. Even as a five-year-old, for instance, I was aware that any attempt to balance on one leg would invariably lead to a face-plant, so I kept both feet on the floor at all times.

On the other hand, I remember being at a physical therapy appointment and being asked to lift my leg.

“It’s just a little test,” they said, but if these words were meant to comfort me, they failed miserably. I closed my eyes in concentration and shifted slightly, leaning to one side until I could do as they asked.

In my mind, I had accomplished what they asked of me, so I was confused when one of the therapists frowned and turned to her colleague.

“She’s compensating,” she said.

I began to assume that “compensating” was synonymous with “failing.”

One day, when I was trying to balance on one leg, I saw that same expression of concern cross the therapist’s face. I put my leg down and steadied myself, and then, eyebrows creasing, I looked her in the eye.

“I’m compensating, aren’t I?” I said.

She looked at me with shocked eyes and laughed.

“Yes,” she said. “You are.”

Ultimately, though, I realized that Miss Anna was right. Compensating isn’t shameful, and it isn’t about what we cannot do; it’s about working with what we were given to maximize what we can do.

Very quickly, I realized that compensating was my survival technique, my saving grace.

~

My dream of becoming a ballerina began to fade shortly after my sixth birthday. It was around that time when I discovered the magic that is writing.

I was still a dancer, but now instead of pulling on my ballet slippers and dancing with my feet, I picked up a pencil and danced with my words. There was just one problem: I couldn’t write.

For our birthday, my brothers were each given a shiny yellow bicycle, but I received the best gift of all: a desk.

I spent hours nestled in the corner of my bedroom, practicing my handwriting. Years before, doctors had warned my parents that I would probably have trouble controlling my hands, especially my right hand. Their worries were unfounded; as I grew, it became clear that my hands were unaffected by my cerebral palsy.

Still, my disability led to visual processing difficulties that turned simple letters into a challenge. My vision was fine, but my brain had difficulty processing what I was seeing.

X’s were the hardest. I couldn’t tell if I was crossing the diagonal lines, so my pencil often stopped short just before the lines were supposed to cross. I remember sitting at that desk with tears of frustration streaming down my face, wondering why everything that seemed to come so easily to my brothers was so difficult for me.

Gradually, as I practiced for hours, day after day, writing became clearer. The letters turned into words, the words became sentences, and the sentences became stories.

~

It was the first day of first grade, and already I had become acquainted with the school nurse. One of my classmates had shoved me to the pavement, and blood was streaming from my elbows, but I was unfazed.

“Squeeze my hand so it won’t hurt as much,” the nurse said as she applied the antiseptic.

I gave her fingers a halfhearted squeeze.

“It’s okay,” I said. “I’m used to it.”

Upon seeing my bandaged arms, however, the teacher called my mom.

“I don’t think she’s ready for first grade,” my teacher said.

My mom adamantly disagreed. “Her balance isn’t good,” she said, “but that doesn’t have any bearing on her academic abilities. Give her a chance.”

Sure enough, a few days later, the teacher retracted her statement.

“Wow,” she said. “I had no idea she could read and write like that!”

As the years passed, it became clear that she was not the only teacher who would assume that my physical challenges implied cognitive impairments.

Five years later, after I spent hours perfecting a written report, my English teacher handed it back with nothing except for a “70” scrawled across the rubric.

When I asked her for an explanation so that I could improve on my future assignments, her brutal honesty astounded me.

“I didn’t read it carefully,” she admitted, “because I wasn’t expecting you to be able to write.”

When I related this situation to my mom, she simply nodded, unsurprised.

“Don’t you remember?” she said. “This has happened to you before. It takes some of your teachers a little while to realize that you’re intelligent. They see the way you walk, and they make assumptions about you. Don’t worry; she’ll read your next piece.”

My mom’s prediction came true. A few weeks later, my second essay was returned, covered in comments and with an “A” at the top.

Instead of feeling gratified, I was crushed. This was one lesson that I didn’t want to learn, not yet, not as an eleven-year-old; this lesson hurt. This lesson taught me that adults, people who were supposed to know better, were going to judge me for circumstances beyond my control.

There were others, too, who reminded me that judgment was a simple fact of life. It was Thanksgiving dinner a few years later, and I had just propped my crutches against the wall when I heard the woman’s words. They were slow and measured, tinted with a southern accent.

“It’s a damn shame that a pretty girl like you has to walk like that.”

The quiet that instantly fell over the room gave a new meaning to the term “awkward silence.” It was as if someone had just pressed the “mute” button on the television. The person who had just spoken was my aunt’s neighbor, and we had been acquainted for all of ten minutes prior to this encounter.

I stared blankly at her, lost for words. Was that supposed to be a compliment? Am I supposed to smile back and say, “Thanks!! Happy Thanksgiving to you, too!” Or maybe, “It’s a damn shame you decided to open your mouth” would be more appropriate.

After another thirty seconds of silence, my aunt cleared her throat.

“. . . Mashed potatoes, anyone?”

~

Despite the judgment that I faced and the uncomfortable situations that often occurred as a result, I refused to feel sorry for myself. Many people seem to think that life comes with a warranty, a guarantee that things will turn out to be—at the very least—reasonably easy and mostly okay. My life hasn’t been without challenges, but it has been reasonably easy and mostly okay. Even as a small child, I was aware of that fact. I knew that I was lucky.

At Children’s Hospital, there’s a giant wishing fountain that sparkles with more pennies than my eyes can count. When I was little, sometimes I tugged on my mom’s sleeve and asked her for a coin so I could make a wish. More often than not, I wished for something petty. I wonder how many parents tossed money into that wishing fountain and wished for their children to survive one more week, one more month, one more year, while I stood there and wished for Mississippi Mudslide ice cream.

Life doesn’t owe us anything—not Mississippi Mudslide ice cream, not a pair of functioning legs. . . not even existence itself.

And so I guess that’s why I was skeptical of the public prayers. Every now and then, strangers approached me and asked if they could pray for me, as if I had been deprived of something that I deserved. I understood that their intentions were pure; after all, I attended Sunday School and believed in God and maybe even a miracle every now and then, but was He really sitting up in Heaven making tally marks on a sheet of lined paper to keep track of every prayer? Was there supposed to be some sort of cut-off point, like if twenty-seven people pray for you, God will cure you or take away your problems, but if you get twenty-six prayers, you’re out of luck? As long as there were parents who were throwing coins into a wishing fountain in the hopes that their children would survive, I didn’t feel deserving of public prayers.

Who knows, though—maybe there’s something to them. Maybe I owe all of my success to a woman in the yogurt aisle of a grocery store.

My mom and I were on vacation the summer after I had broken my leg. It was a blindingly bright day, and we were running some errands when we realized that we drank too much lemonade. Suddenly we really, really had to find a bathroom.

We ducked into a nearby grocery store with our sunglasses on, and my mom gripped my elbow to guide me.

“Okay, take a right here, then go straight and take a left and according to that sign it should be right around that corner . . .”

I was making my way through the store with my sunglasses and crutches when a woman’s voice stopped us in our tracks in the middle of the yogurt aisle.

“Excuse me,” she called. “May I pray for you?”

I stared, momentarily forgetting our mission.

At this point in my life, my crutches were basically an extension of my body, and I was confused for a minute.

Is she talking to me? I thought. Why do I need to be prayed for?

“Ummm . . . Sure? Thank you.”

“What’s your name?” she asked, her voice urgent and solemn.

“Elizabeth,” my mom cut in. My middle name. (“It was nice of her to offer,” my mom said later, “but she might have been a crazy person!”)

I had the realization as we were driving back to the rental house. The forearm crutches. The sunglasses. And my mom had been guiding me by the elbow.

“Oh my God, Mom. She thought I was blind.”

There was a moment of silence before my mom slammed on the brakes and pulled over to the side of the road, where we laughed ourselves breathless. A prayer offering is better than the alternative—”God must be punishing you for something you did” (a comment that I’ve also received on occasion)—but somehow I had managed to accidentally deceive a follower of God, an innocent, do-gooder consumer of organic strawberry yogurt, into thinking I was blind.

Wow,” my mom managed when she caught her breath. “We are so going to hell.”

~

The people who offered to pray for me, at least, were kind, and I appreciated their efforts. Still, nobody showed me kindness quite like a little boy named Ben. Above all else, it was Ben who made school a place of understanding for me, a place where my differences made no difference.

We met on the baseball field during recess in first grade. He was exactly three-hundred and sixty-three days older than I was, tall and dark-haired with a passion for narwhals, and legs that were always moving. I was small for my age, with hair that was nearly as pale as my skin. I hadn’t the faintest idea what a narwhal was, and my legs moved with a stiff, shaky slowness that attracted stares from my classmates.

But Ben knew what “different” felt like. I guess in that way, we were the same.

Our brains didn’t work like everyone else’s. We were both labeled by our doctors and teachers with acronyms that we tried to transcend. His was ADHD; mine was CP.

It was an unspoken connection, a quiet understanding. Whenever the school bell rang to signify the end of recess, he waited for me on the playground, slowing his pace so that we could walk inside together.

“Don’t wait,” some of the teachers said. “You’re going to be late. Hurry up.”

He waited.

And in the classroom, sometimes the letters and numbers would get mixed up in his head. We pushed our desks up to each other and overlapped our workbooks. I explained math problems and spelled out words (our favorite word, we decided, was miraculous), and we handed in our work only when we were both finished.

One day, the teacher’s aide scolded me. “He is slowing you down,” she said. “Stop waiting for him.”

I waited.

In whispers, I continued to teach him how to use his numbers and letters.

And at recess, while the other kids ran around and chased one another, we sat together and played pretend.

In physical education class, whenever safety concerns prevented me from participating in an activity, he sat on the sidelines with me.

When I was in the hospital, he was one of my first visitors, and I remember that he turned to face the wall so I couldn’t see him crying.

We remained in each other’s classes for five years, and although we haven’t seen each other since graduating high school, I will always remember the friendship that began when a seven-year-old boy approached me on the baseball field. It was, as he said, nothing short of miraculous.

~

Halfway through my freshman year of college, I lay on my bed with my cellphone pressed to my ear and took a deep breath.

“Hey, Mom . . . You know the new shoes I got just before school started? I kind of wrecked them.”

Because of the way that I walk, my shoes wear down in all the wrong places. My right shoe, especially, was ruined.

My mom was silent for a moment, and then:

“Good!”

I waited to ensure I’d heard her correctly, shocked. “I don’t think you heard me. I wrecked my shoes. Like wore-a-hole-into-them kind of wrecked.”

“I heard you. Congratulations.”

Thoroughly confused now, I checked my connection.

“Mom,” I said, slowly and clearly this time. “I wrecked my shoes. My new shoes.”

” I know!” she said, her voice cheerful. “And those doctors said you might never walk!”

~

Sometimes it’s all too easy to focus on those who doubted my abilities, whose words tore me down and made me feel inferior. Far more important, though, are the people who believed in me, who took my hand and showed me that I can run, who saw me as a person rather than a diagnosis, a success story rather than a tragedy. It seems that for each person who was blinded by my disability, there were several more who saw my potential, who showed me that, above all, I am capable.

One blindingly bright day, a decade after my rebellious run with my dad in the backyard, I was volunteering at an event at the Audubon Society, and I couldn’t help but laugh that the supervisors assigned me to be in charge of a booth that required athletic abilities. Participants were required to throw a ball at a target, and a radar gun measured its speed.

I stood at my booth and watched as a boy and his father approached. The boy was in a wheelchair, unable to speak, with limbs that twisted from the stiffness in his muscles. As they retreated, I thought of the people who saw beyond my disability, and I stopped them. Looking into the boy’s eyes, I asked if he would like to try.

I think he would,” his father said, a smile in his voice.

I guided the boy’s hand into throwing the ball, and I thought back to when I ran with my dad, back to when I pulled on my ballet slippers, back to when I realized my potential.

As the ball struck the target, laughter spread across his face, and I knew that he was capable. Just like me.

 

Kerry

For the majority of her childhood, Kerry rarely spoke about her disability, but a writing class that she took in her senior year of high school changed everything, and she realized that she had words to share with the world. Her disability — mild spastic diplegia cerebral palsy — has shaped her as a person, but above all, it has shown her that we are so much more than our appearances.

She is currently a twenty-year-old college student studying neuroscience and loving life.

 

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