Charley sat in the passenger side of my car, taking deep breaths and talking to himself. I can’t do this. I don’t want to do this. I have to do this.
Then he opened the door, got out of the car and sat — for the first time — in the motorized wheelchair. We had bought it a few weeks before because we knew this day was imminent. The chair had sat parked in the corner of Charley’s room for nearly a month while he tried to get used to the idea of using it at school. People will look at me differently. People will treat me differently. People will stare.
Shortly after winter break, the day came when his legs could no longer withstand the repeated trips back and forth down the long hallways at school. At drop off that morning, he sat in the chair and then motioned for me to open the car window. “When I get home today,” my 17-year-old son warned me, “I’m gonna need a cocktail.” A sliver of a smile softened my ultra-tense jaw.
One last deep breath, and then Charley took the plunge. Head held high, he began rolling toward the front door along with a stream of kids who were heading into school on their own two feet. As I pulled away I heard him say, “Hey Jack, how do you like my new wheelchair?” Jack picked up his pace to fall into step with Charley’s wheels. “Pretty sweet ride Chach.” he replied. “Slow down so I can go in with you.” I let out the breath I hadn’t realized I’d been holding.
Every morning for the next two weeks, I was sucker-punched in the gut over and over again when I dropped Charley at school. As I carried out my new routine — lift wheelchair out of the back of station wagon (bending from the knees to prevent a hernia); unfold footrest, arms and back; hang backpack onto back of the chair; wait and watch until someone opens the door for him — I avoided eye contact with the other parents. Some stopped for a minute so their kids could jump out of the car and rush into school, laden with gym bags, basketballs, french horns, violas…each piece of sporting equipment and instrument stabbing at my heart, reminders of activities Charley can’t do because his legs and arms are too weak or he doesn’t have the lung capacity. Some parents switched from passenger to driver side because their kids had driven them to school, preparing to get their driver’s licenses — that long-awaited rite of typical adolescent passage. I did not want to look at them or talk to them or think about them.
A few weeks later, Charley wrote a poem for English class entitled “Every Day.” I’ve read it over and over again since he first showed it to me, and his words have sunk deep into my bones. Today, I’m back to myself again. I’m living my own life — soaking in the beautiful parts and fighting like hell to change the awful ones. Or, as Charley puts it, “finding the ripest fruits” and “climbing the bumpy road.”
Thank you Charley, for setting me straight.
by Charley Jacob Seckler
The Mountain we walk is steep
We push the rock to the peak
Stroll our wheelchairs through the maze
Tie our laces and brush our teeth
Like a wave out at sea swaying towards the wind
We move like a herd of chasing zebras
Slow down I say
the sun is peeking through the shade
Sitting in my chair is light
Life is finding the ripest fruits
Rushing tastes bitter like rhubarb
Patience our juices must blast
Climb over the bumpy road
Tell Duchenne you’re here to stay
Beauty is beyond the ridges
We may never reach the peak
The ripest fruits are perspective
Embrace our handicaps like gold
We climb on like Sisyphus
Everyday we turn grapes into wine
Turn wheelchairs into magic carpets