Delmarva Review: Broken English, Body Language: A Friedreich’s Ataxia Memoir, by Sam VanNest 

Author’s note: Friedreich’s Ataxia is a rare genetic disease that gradually causes difficulty walking, a loss of sensation in the arms and legs, and impaired speech. The disease causes damage to parts of the brain and spinal cord and can also affect the heart. The word “ataxia” comes from the Greek word “ataxis,” meaning “without order.” 

AT A CAFÉ IN NICE, FRANCE, in the summer of 2007 a Senegalese man asked me for a cigarette, motioning with his hand the universal gesture for smoking. So, we smoked and talked about whatever we stumbled upon the words for, as neither of us spoke the other’s native tongue very well. I knew airport vocabulary from taking a French class back at college in the USA, so I talked about my flight. He knew a bit about music in English. He told me that he played the drums and liked System of a Down, an Armenian-American metal band. He’d tap his foot as if he were playing a bass drum pedal, occasionally bumping my crutch I had stashed out of sight under the table. 

I finished my cigarette and espresso, got a baguette from a bakery, and walked back to the upstairs apartment where my girlfriend, Rebecca, was staying while she studied at the school in the city. I hadn’t originally planned on visiting her at all. We had studied in England together the semester before, and I was broke. I took out a loan to buy the plane ticket to France, hoping for an internship in the summer to pay it off quickly. It was a spontaneous thing. I was depressed, and my friends had told me that it would pick me up to travel. I wasn’t even sure she wanted me to come to Nice. I didn’t walk well (I was walking with a crutch at the time but, in hindsight, I should have been using a wheelchair), and France isn’t very accessible for the disabled. But we did it all—went to Paris for a weekend and rode the Metro, climbed Montmartre, saw the sights, drank espresso all day, and when we got back to our hostel at night, we drank cheap wine much better than anything we could afford in the States. 

Notre-Dame Cathedral – Sam VanNest sketch, 2007

While in Paris, we went to a bread and cheese festival in the courtyard of Notre-Dame Cathedral, and there was a court set up and a wheelchair basketball game going on, all in the evening shadow of the façade. It was a very strange spectacle. Bec brought a plate of cheeses and a warm baguette to where I was sitting, sketching the cathedral as best I could. She wondered aloud how the disabled players got there, how they got around at all in this city, unforgiving as it is for anyone with a mobility issue. Along with my undergraduate alma mater, St. Mary’s College of Maryland, I had applied to the College of Charleston in South Carolina, and they said their campus couldn’t accommodate me very well, citing historical reasons to limit modernizing. Similarly, Paris has a history to preserve, of which people with disabilities have no part. When the game ended, the players, one and all, stood from their chairs to applause. The game had been a farce, a show where the players used the wheelchairs to tell a fictional story, a performance. I felt duped. In this place where I couldn’t speak the mother tongue, where my body spoke loudest, I was a caricature. 

I’ve read that Berlin, Germany, is a great tourist city for people with disabilities. After being bombed in the Second World War, the city had to rebuild with disabled veterans in mind. The physically disabled are part of the city’s history, of its cultural DNA. The same is true in the USA, especially so since the passing of the Americans with Disabilities Act in 1990: freedom of access applies to all. In his book Discipline and Punish the French sociologist Michel Foucault accuses America of having no sense of its historical self; we build, tear down, and rebuild in an endless cycle of modernization. But I’m glad that I can get to the top floor of most places in my home country by pushing a button. The USA has, and I hope will always have, the freedom of contemporary construction. America, for me, is convenient, if less glamorous than France. Foucault says nothing in the USA is sacred, but I could only see Paris from the ground floor of the Panopticon, his metaphor for absolute power. The tower didn’t have an elevator. 

The whole trip was exhausting, but well worth it. I felt good about myself for the first time in a long while. I felt like I was doing something worthwhile, something that I wouldn’t be able to do in the future. I wasn’t sleeping, though. My knees and back ached from walking everywhere every day. I had gotten used to drinking myself to sleep at school during that semester before visiting Bec in France, something I wasn’t proud of or eager to expose to her. Three beers usually did the trick, or a glass or two of wine. I needed a knockout plus a painkiller in France, so I’d drink a bottle of wine, slugging it covertly when Bec left the room. I slept like a baby but hated God in the morning. I spent ten days in France, four in Paris and the rest in Nice during Bec’s school week. She’d leave for class in the morning, kiss my throbbing head, and I’d get up a few hours later, shower (like a responsible American), and hit the town on my own, looking for a café with cheap espresso where I could read and smoke and nurse my hangover. 

I don’t speak much French. I speak more Arabic than I do French, and more Spanish than either. Bec didn’t like me wandering around on my own during the day, not because I don’t speak the language but because Nice is even less accessible than Paris and I, being a stubborn man, brushed this off and did it anyway. I’d wander the town after I was cured by espresso and some variety of tomato and cheese on a baguette, find fresh strawberries at an outdoor market, get a sweet white wine to complement, and bring back something for dinner besides. I only fell once when I walked by myself during the day, down some stairs to an alleyway market. A big Frenchman hoisted me up and sat me on the bottom step, brushed the pigeon shit out of my hair, shoved a cigarette in my mouth, lit it, and began talking. Of course, I didn’t understand a word, and said so with the most useful French phrase for a non-speaker. He did his best in English. We parted ways when I stood up again, and then I bought Bec a purse. 

One night during my sophomore year of college, back in the USA, my roommate and I threw a party in our suite. It was raining, and the people coming in made the floor slick. The foot of my crutch didn’t do well on wet linoleum, so before long I slipped and fell in the middle of the party. It was at least a chorus of “Fight for Your Right” on the stereo before Bec swept to the rescue, like she always did, and hoisted me to my feet. I made a joke, and everyone laughed. Bec just squeezed my arm and said nothing. Having neutralized the situation with humor (like a responsible cripple), I left the party to stay the night in her apartment. It took three shots of rum to knock me out when we got in, but I slept like the dead. 

I have dreams after being abroad that people I know here in the USA have foreign accents. I have one recurring that my father has an Irish accent while we’re out sailing. In my dream, I yell at him, tell him to stop faking the accent, but he says it’s fine and hands me the tiller. My dad was the high school quarterback and always pushed me to be physical before I was diagnosed at 16. Now he spends his weekends exercising his freedom of contemporary construction on the house, installing railings and ramps. I never asked him to put a railing on the dock to the cove in the backyard. It was just there when I came home from school, and I could see the blue herons again. 

When Bec went to France, I realized the only person who knew the story of my body was gone. I hadn’t told anyone but her. She was the railing on my dock. So, I went to her, braved airports with layovers with an ego that always declined a wheelchair from the wary airport staff. On the nine-hour flight home from France to DC, I discovered it only took two tiny bottles of airplane wine to knock me out. I think it has something to do with the air pressure. 

On my mornings out wandering Nice alone, I was never uncomfortable not being able to speak French. It was actually refreshing, and I felt independent. I had these interactions with strangers in cafés, using what words I knew in French and some in Spanish, and they’d answer me in what English they knew, our conversations limited by our vocabulary. I talked for a while with the Senegalese man on several occasions, bumping into him at the same café every day. We’d swap buying the espresso, share cigarettes, and have these non-conversations that were much more based on effort than topic—our language broken, our bodies telling stories our vocabulary could not. We’d both get up to leave, and he’d hand me my crutch from under the table.

Sam VanNest graduated from St. Mary’s College of Maryland and has a MA in English from University of Oregon. He likes to laugh without guilt, doesn’t like nostalgia, likes open mics, and doesn’t like podiums. He loves the Chesapeake artists’ community, has never liked Ferris wheels, likes certain kitsch, doesn’t like assumptions, and likes being. He lives in Easton, on Maryland’s Eastern Shore. 

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