By Hailey Hughes
I stand in the shower, hand grasping the grab bar to keep from slipping on the sudsy floor. My left leg is spastic tonight and the hamstring feels like a violin string pulled taut over the instrument with the bow scraping mercilessly over it, back and forth. I let go of the bar and sit on the floor of the shower to give my leg a break. I sit with my knees pulled up by my chest. My hands rhythmically rub sweet mint shampoo into my scalp while my toes on my left foot splay and contract involuntarily. The warm water beads down my back and I can feel the tension slowly release from the back of my leg down to my toes; the spasm is over.
Published April 15, 2016
With a disability, there’s a certain vernacular that people use, words like: “suffer,” “inspiration,” “special needs,” in addition to all the acronyms like “IEP,” “PT,” and “OT.” I know most people mean well when they suggest that I’m an “inspiration” for living my life in a certain way despite “suffering” from my disability, but it’s hard not to be a little taken aback by being put on an “inspiration pedestal.” When placed on a pedestal, one can’t move away from that; there is nowhere to grow. I have suffered and faced tragedy like anyone else trying to make it through life, but I am not suffering—I am living my life.
One day at church, our song leader mentioned a person who had suffered greatly during his lifetime, Horatio Spafford, a bespectacled nineteenth-century lawyer with salt and pepper hair. Spafford had a law practice based in Chicago and spent time with his wife, Anna, and their four daughters helping others in need after a fire ravaged the city in 1871. The Spafford family decided that they needed a vacation and so they decided to go with another family to Europe. Horatio Spafford packed up his family and set them to sea to Europe ahead of him. While he finished attending to business, his family boarded the Ville du Havre, which sank three miles to the sandy depths of the Atlantic Ocean when another ship slammed into it. Twelve minutes passed from when the ship was struck to the moment it drifted to the bottom of the ocean.
One can accomplish a lot in twelve minutes: take a decent nap, have sex, take a shower, talk with your mother on the telephone. Twelve minutes, however, was not enough time for the many passengers to seek refuge from the sinking ship, and in fact, only 27 of the many people on that ship survived, and Anna was among them. Her telegram sent to Horatio stated simply: Saved alone.
Having read the telegram, Spafford boarded another ship to Europe to retrieve his love, and while his ship was crossing the Atlantic Ocean, the captain pointed out the location where his daughters likely drowned, cold and alone.
In the nights that I lie awake staring up at the drop-ceiling of my bedroom, questions roll down from the attic of my mind. “What does it mean to actually suffer?” Surely, one cannot define suffering because it’s subjective—it carries different connotations for different people.
is suffering and Spafford’s resilience in the face of the death of his four children is an inspiration to those of us who sing the hymn he penned, “It is Well,
” after being so moved by the sight of his daughters’ watery graves. Every time I hear the strains of the melody of Spafford’s hymn, I am reminded that although this man suffered unspeakable tragedies in his life, he created a poem that touches and soothes the tears of the weary and heartbroken.
In the shower, my fingers search for the silver grab bar again. I clutch it and pull myself to a standing position. I rest my head on the wall after turning the water off. My head thrums from the warmth and energy left behind by the spray of the water. My brain is like a film strip with microscopic splices that, although miniscule, alter the functions of my everyday life. Words. I have problems remembering words, names, and encoding long-term memories.
Spafford took this horrific trauma and transformed it into art, so that others can understand and relate to his hardship, but more specifically, he used words to participate in a type of expression in which the sinking ship becomes an abstraction on the page, hinted at in ambiguous diction and religious metaphors. The song becomes a blanket under which Spafford can tuck his children into their final resting place. With this blanket hymn, others too can be carried along by the hopeful strains and verses to heal their own raw wounds.
* * *
At Physical Therapy, I worked tirelessly on walking up and down the steps properly and balancing on a balance beam. When I was a toddler up until around five years old, I learned to “bear crawl,” which is crawling up or down stairs on one’s hands and knees. My therapist, Elaine, was young and perky, with short brown hair and golden hoop earrings dangling from her ears. A white balance belt was cinched around my waist and her hand was on my back as I stepped up on one step with my right foot and tried to gain enough balance to try another step.
“Okay, now the left one. It’s okay, I’ve got you, and I won’t let you fall.”
With white knuckles clutching the railing on the small set of wooden stairs, I almost made it up another step until my toe caught the lip. I wobbled and started to fall forward. She grabbed the belt and pulled me to a standing position once more. This time, Elaine grabbed my left ankle and maneuvered it up to the next step. I practiced and practiced and practiced. One day, I made it to the top and now I had to learn how to return to the bottom. With one hand on the railing and one hand holding onto Elaine’s hand, I started down one stair and began wobbling like a newborn colt. I whimpered and sat down on the step. There was no way I could descend the stairs without falling. I wouldn’t do it.
“Come on, girl, you’re almost there! You made it up, now you just have to make it to the bottom. I have you and I will not let you fall. Trust me,” she said, smiling. I grabbed her hand and tried once more.
Many years have passed since those physical and occupational therapy appointments where I learned to navigate stairs successfully and write my name in a sprawling form of cursive. I would take on many other challenges in the years to come.
My sister, Paige, and her boyfriend, Chris, have taken to rock climbing during their free time. They invited me and I was nervous but I went along anyway for their company. Once my sister helped me put my harness on and tied the orange rope to my harness, she fastened her clip to my rope to belay for me. I examined the wall. It was going to be a challenge, but I was determined to at least try. I decided to place my feet on the yellow and green “rocks” that looked like a good foothold. I pulled myself up and grabbed on to a green rock that looked like a piece of broccoli.
“Give me some slack,” I called below to my sister and I felt the rope attached to me slacken a bit. I pulled on the wall with my arms and placed my hands on a purple hand-hold above me. I was literally stretched too thin.
“Use your legs, too, don’t let your arms do all the work. It’ll be easier to maintain yourself!” my sister advised. I tried to pull my right leg onto the ledge above me, but I kept barely missing it and fingers were red and irritated from holding on too long.
“Okay, I’m coming down.”
“Let go of the wall and don’t grab the rope!” Paige said, as she released her clip.
I let go of the wall and panicked. I grabbed onto the rope and my back slammed against the rock wall and I twisted around the rope. It was like a production of Peter Pan
gone terribly wrong. I was able to untwine myself and bounced down the rest of the way with the balls of my feet. I sat on the floor and untied the rope from my harness.
“You don’t need to grab onto the rope! You’re attached to my harness, too, and I won’t let you fall. It’s pretty much impossible for me to let you fall. You have to trust me.”
She extended her hand and I grabbed it, and stood up. The next day, I looked in the bathroom mirror at an angry purple bruise from colliding with the rock wall. I ran my fingers over it and a dull pain eradiated from my back. A different day, another bruise.
* * *
Last summer, I boarded the Amtrak for a 10-hour train ride to Washington D.C. to spend some time with a friend I’d met on a Cerebral Palsy support group online forum. He had visited me earlier in the year, driving seven hours to get to know me a little better. This time, it was my turn. The train chugged through the heart of the Appalachian Mountains, and I felt small and insignificant, but it was comforting because my problems suddenly seemed small and insignificant as well. The foliage nestled and tucked around the mountains exploding with color; purple and blue flowers and cattails dotted the landscape. As a child, I picked cattails from our yard and placed the end between my lips. I felt like a farmer, except I was without a straw hat. The leaves on trees were already changing in some areas, with patches of red and orange, a taste of the autumn that would come rapidly. I cracked open a book to read after journaling about the train ride.
I disembarked in D.C. no worse for wear and a few days later, boarded the Virginia Railway Express with the friend I’d come 10 hours to see, Blake. We made small talk on the train about college and summer jobs, and I tried not to stare at his hand. Blake’s hand looks like a pottery piece that misfired in the kiln. The fingers on his right hand are rigid with spasticity and clenched in a perpetual fist from CP. His hand didn’t bother me; on the contrary, it is beautiful. His knuckles are perfectly sculpted, round scoops of French vanilla ice cream. The green veins that spider web the back of his hand become more pronounced when his hand is clenched. I imagine all the blood and oxygen traveling through those veins from his heart, and I marvel at the ingenuity of the human body for its vulnerability.
We disembarked from the Virginia Railway Express, missed a step, and tumbled to the concrete. Everyone stared as Blake struggled to help me up. Everyone always stares. My knee was gushing with blood, and little shards of gravel and of dirt added some nice decorum to my gash. Blake found a first aid kit and together we bandaged my knee. I held the cotton and ace bandage in place while he wrapped it around my knee. He held the excess strip of bandage out, and I grabbed scissors to cut. We made a good team.
Over the next few days we began to know each other a little better, and Blake decided to show me around the city of Fredericksburg, VA. He kept going on about this pizza that I had to try at a pizza parlor called Benny’s. The greasy slice of cheese pizza was half the length of my arm, and we both laughed as stringy cheese hung from our lips. The formality of trying to be proper and well-mannered when eating was over. We sat outside on cast iron chairs, while people passed by, marveling at our large slices of cheese pizza.
“I want to take you to Frazier’s, once you finish.”
“What’s Frazier’s?” I asked, wiping my mouth.
“It’s a woodworking craftsmanship shop. It’s so cool.”
“I’m not really into woodworking. The last time I used a really sharp kitchen knife, I almost amputated my ring finger.”
“Just come with me, you’ll like it.”
We walked down the street to Frazier’s and Blake held the door open for me. I inhaled the deep scent of oak and other musky woods. Wooden rocking chairs and Curio cabinets littered the store. Little knickknacks caught my eye, like the shaving kit brushes and candles handcrafted using old champagne bottles. I picked up the rose-scented candle and inhaled; the aroma made my stomach tingle. I could imagine myself lighting this champagne candle and reading a novel on a cold, winter night.
“Come on, you haven’t seen the best part, yet,” Blake whispered.
“Why are we whispering all of a sudden?” I hissed.
He grabbed my hand and we walked nonchalantly through the back door of the store. Blake turned the knob with his good hand and pushed open the door. It was like what the Garden of Eden must have looked like. A sprawling green courtyard spread out before me with birdbaths and cast-iron furniture scattered around. Strings of bubble lights hung from the picket fences on either side of the courtyard. A rickety set of stairs led to the top, from which you could look out over the building of Frazier’s and to the rest of Fredericksburg.
“Let’s climb the stairs. The view is great. Do you think you can manage it?”
“Yes, but I might need to use your arm for stability,” I said, looking at the viney overgrowth on the stairs.
“I’d be happy to offer my arm in your time of need.” He presented me with his left arm, his hand slightly unclenched.
I slid my arm through the crook of his elbow and we ascended the stairs slowly, like trapeze artists holding on to each other’s ankles, determined to stay in the air. Once we reached the top, I breathed heavily and looked out over the landscape before me. The sun was beginning to set and brilliant purples and oranges streaked the sky. Someone had turned the bubble lights on and from this elevation, they looked like blinking fireflies.
“Thank you for showing me this. It’s wonderful,” I said, squeezing his shoulder.
“You’re welcome, I’m glad you could make it.”
We had spent the day at the National United Cerebral Palsy organization office, where we discussed how accessibility could be improved in public places. While there, I had noted the necessity of handrails for every set of stairs. I’d fallen too many times. This time, though, I was glad for the absence of a handrail and the presence of this understanding friend. I would have gladly taken his arm any day.
So many times, my body and brain betray me—falling down steps not equipped with a handrail, misunderstanding the concept of multiplying two-digit numbers together, confusing the syntax of conversational speech. It is difficult for me to trust other people when I can’t trust my own body to complete simple tasks. Every day, though, I become a little more adept than I was before, and continue to educate others about the disability rights movement. Mostly, I am trying to survive in a world that is not conducive to my survival.
When not writing or reading, Hailey Hughes enjoys spending time with her family, friends, and cats. At two years old, Hailey was diagnosed with Mild Spastic Diplegia Cerebral Palsy, a neurological disorder that affects her leg functions and fine motor skills. She and her siblings, Caitlyn, Paige, and Joshua, have the distinction of being the first surviving set of quadruplets in West Virginia, and the CP diagnosis is the result of their premature birth at 27 ½ weeks. Hailey will graduate with a BA in Creative Writing in May 2017 from Marshall University, where she also works as a Writing Center tutor. Her academic and creative publications include Praxis: A Writing Center Journal and Marshall University’s Literary Magazine, Et Cetera. She was recently awarded a second place distinction at the Maier Awards at Marshall University for her video essay, “A Braided Exegesis of African American Hair.” Hailey is a staff writer for The Odyssey and a contributor to The Mighty, a writing platform in which people can share their stories about disability. One of her major aspirations in life besides becoming a professor and essayist, is to finally wear heals without falling over.