Rachel Hoge | Longreads | August 2017 | 17 minutes (4,315 words)

Róisín would do all the talking. She’s the chapter leader of the support group in Brooklyn, and accustomed to the microphone. She’d wear jeans and a tunic, glasses, her hair twisted in a clip. The only odd thing, to me, would be her mouth. It would be loose, relaxed—an intentional muscle movement, perhaps a symbol of acceptance after years in the self-help community that my strained jaw wouldn’t recognize.

There are 100 people in the conference room, 100 people waiting for her to begin. Half are in their 20s, from places like Boston or New York. Some have never been farther south than Illinois. Some are from Iceland, Serbia, and beyond. All convene in a hotel on Peachtree Street in Atlanta, Georgia—the blistering peach pit of the South.

They are all connected by the way they speak.

“Welcome to Take it to the Ssssssstreets,” Róisín would say into the microphone. Everyone would clap. “Thank you for p-p-participating in one of our most p-p-p-popular workshops. I’ll give a brief explan-explan-explanation, then we’ll bbbbbreak into small groups and head outside.”

Outside. Julia and I are already there and having our own unofficial panel. We call it Pool Time. We call it Necessary. We’ve spent three days in big groups, small groups, chatty groups, quiet groups. There are 800 people at the National Stuttering Association Conference. Most of them stutter, like us, but there’s also speech language pathologists, researchers, scientists, family members, significant others. More people than we could ever interact with, more names than we can remember. The conference has been held for over three decades, but Julia and I are both first timers.

Julia flicks cigarette ashes into an empty beer can. “It’s hot,” she complains, and I agree. We watch two sisters jump off the pool’s edge, gripping a one-person float shaped like a duck. The sisters debate speed, angles, and the water’s temperature, their black hair dripping onto the asphalt. Their joint jump is unsuccessful, despite all their planning. The sister in the back falls, laughs, swims to the side to hoist herself up. They can’t be older than ten.

“These kids are making me nervous,” Julia says, watching their small bodies bob around in the deep end. They grip their duck-float rigidly, attempting to stay above water.

I’m lying flat on a chaise lounge, my vision blotched by the sun.

“Kids are so rrrrresilient though,” I say—realizing later my comment wasn’t necessarily comforting—but I had been thinking of something else. Of another kind of resiliency. Of a neurological speech disorder often portrayed incorrectly, handled incorrectly, discussed incorrectly. Those who know the most about it are inside this hotel, discussing stuttering etiology and neurology, fears and challenges, and following Róisín through the streets of Atlanta in an effort to proclaim the word stutter.

There are 800 people at the National Stuttering Association Conference. Most of them stutter, like us.

But I’m sitting outside with Julia, wondering how to share in a struggle that’s only ever been mine.

***

It’s 2007, one week before Christmas, and I’m selling a banjo.

“You can see here that it’s an o-o-open-back bbbbanjo…” The customers are an older couple, with a small boy beside them—elementary age. I breathe in, trying to calm my nerves. They all stare at me expectantly.

I’m 15 years old and working every afternoon at the local guitar store. On slow days I sweep, spot-clean display cases, sit on a stool and guard the cash register. Sometimes I stand outside the lesson rooms, catching a student’s rendition of “Old Joe Clark” on the fiddle. For months at a time I pick up guitar, then mandolin, then piano. When my boss isn’t looking, I borrow beginner books and practice instruments behind the counter. The music teachers give me pointers in-between their lessons.

But I’m still just a high school kid, working in sales—with a speech impediment that no one understands.

The banjo I’m selling has a maple neck: delicately blonde, freckled in silver. It’s open-back, five-string, finished in satin. I want to mention these things because it will sell them, I know it, and it’s been too long since we’ve had a sale. “So, it’ll be l-l-l-light enough for a s-s-small child to carry,” I say, handing the banjo to the boy. I know what happens next: the boy will pluck the banjo’s strings, stretching its steel and $400 price tag. The couple will laugh and ask him to be gentle, then look at me, shaking their heads that say aren’t kids just so cute and I’ll smile and agree, showing them hard-shell banjo cases.

But this time, they’re more interested in something else. They’re laughing and I’m squinting, trying to understand the joke.

“You sure do have a funny way of talking,” the man says.

I smile through the heat, through the clouds of red spreading across my skin. “Sorry,” I say, apologizing for my speech. I don’t stop apologizing for years and years and years.

***

One of the first things you learn as a person who stutters is a list of names. It’s filled mostly with men—Samuel L. Jackson, Winston Churchill, King George VI—because stuttering affects four times more men than women.

This list is long, comprehensive, and full of fantasy. Ed Sheeran overcame his stutter through rap music. Joe Biden, in the company of nuns, read Emerson and Yeats out loud. Bruce Willis became the class clown. These cures are interesting to hear, but impossible to replicate. They are rooted in childhood—which is the only time stuttering can be reversed. Once you’re an adult, there are only ways of hiding.

‘You sure do have a funny way of talking,’ the man says. ‘Sorry,’ I say. I don’t stop apologizing for years and years and years.

A live recording from The Louisiana Hayride has preserved Elvis Presley’s light, southern intonation—including his stutter. “Well we got a song right now friends that we…would like to do for you. We ain’t been doing it but — but — but — but…yeah,” he says, while introducing the song “Maybellene.” When he speaks to the audience he stutters, then stops, pauses and tries again, often leaving his thoughts unfinished. This is now called covert stuttering—an attempt to hide the stutter by any possible means. “It’s a song about a…it’s a song about a…” Elvis takes a breath. You can hear a guitarist in the background sounding bored, playing a riff quietly.

Most famous female stutterers cite performance as their cure. As a child with a stutter, actress Emily Blunt used various accents in plays and noticed her speech improve. Marilyn Monroe’s breathy trademark was actually the product of a speech therapy technique. In a 1960 interview, Monroe says, “First time was in the orphanage…and then later in my teens, I stuttered. And I was…they elected me secretary of the English class. No, secretary of the minutes of the English class. Whatever you call. And then I’d say, ‘minutes of the last meeting.’ Like a, mmmmmmmm.” They all laugh loudly at her imitation—the interviewer, Monroe, some others who are listening. “Oh, it’s painful,” she tells them later. “Oh God.”

There’s a history of people who stutter seeking the arts in search for a cure. Maybe it’s the chance to be someone else, anyone else, as long as they seem fluent. Maybe performance is a disassociation, an abandoning of oneself. Or maybe there’s a stage magic, a sweeping of stars that circle the body and heal it.

But when you consider that only five percent of children go through a period of stuttering that lasts, and three-quarters of those will recover by late childhood, leaving only one percent with a long-term problem, the numbers suggest that, if there is a magic cure, then there may also be a curse.

***

There’s a reason all the animals in the 1950 Disney film, Cinderella, are silent except for the mice, who wear peasant clothing and speak frantic pidgin English. Turns out, the concept of talking mice isn’t a huge leap. Mice have always had the ability to communicate with one another vocally, mostly using ultrasonic vibrations that are beyond the human capacity to hear.

Mice closely resemble humans—genetically, biologically, behaviorally. Which is why human conditions are easier to replicate in mice, and why the Senior Investigator at the National Institute on Deafness and Other Communication Disorders, Dr. Dennis Drayna, injected mice with known stuttering genes and mutations.

Imagine a mouse, waking with eyes red and sleepy, turning to his littermates, suddenly unable to say a word.

One of the first things you learn as a person who stutters is a list of names. Ed Sheeran overcame his stutter through rap music. Emily Blunt used various accents and noticed her speech improve.

The timing and speed of their sequencing forever altered, the stuttering mice are controlled by long pauses, repetitions, and prolongations. People (and now, mice) who stutter and carry these stuttering genes are “otherwise neurologically normal,” according to Terra Barnes, Ph.D., of Washington University in St. Louis, in a 2016 interview with the National Institute on Deafness and Other Communication Disorders. “While it’s surprising that the disorder can, to some degree, be recreated in a mouse, having an experimentally tractable animal model for some aspects of this disorder presents many exciting, new opportunities to move research in this area forward.”

***

The first night at the conference I have a nightmare. My dog is walking down a driveway with gravel in her mouth. “Hey sweetie, hey baby,” I croon to my fourteen-year-old Shih Tzu. When she tries to breathe, rocks fall out. She coughs, chokes. She says something in English that I can’t remember. When I bend down to pick her up, she’s gone.

***

Julia finds her way around Atlanta quickly. Every afternoon, after we’ve attended four to five workshops, she runs in Piedmont Park. She tells me about the skyline colored in blue metal, about the shadows canopies make at dusk. I mostly stay in our hotel room, too tired to leave. I look at the city through the glass door of the balcony that, according to the hotel’s safety warning, I should never open.

Julia and I have been paired randomly by the conference director. Julia—a Canadian graduate student in wetland ecology—and me, an American graduate student of the arts. Apart from both being in our early 20s, we have little in common. Even our stutters are different. Julia used to block—a term referring to forceful speech delay that sounds silent to the listener, but is laborious for the speaker. Julia said her blocks had a density similar to a brick wall. One moment you’re speaking, the next—you’re stiff, panicked, unable to say a word.

But then, she spent three weeks in a fluency shaping camp—an intensive clinic where speech language pathologists analyzed her speech and provided techniques to help her achieve fluency. Now she sounds more fluent, with only occasional blocks, and feels out of place both among people who stutter and those who don’t. Her improved—but uncured—speech has left her in a perpetual state of in-between.

My stutter is mostly repetitious (r-r-r-r-r-repetitious), though prolongations (ppppppppprolongations) and blocks (no sound) aren’t uncommon, either. The severity of my disability often fluctuates. In a normal conversation, I might have one or two disfluencies—moments of irregular speech—per sentence. Drinking at a party with friends, I might have none. Being graded on my participation in a college course, I can barely speak two words.

Before the conference I was becoming increasingly frustrated by the adaptability of my stutter. The stutter itself adapts from repetitions to prolongations to blocks—so whenever I find a momentary “solution” for one form of stuttering, another one flairs up. Once, my speech language pathologist recommended deeper and more intentional breathing before words, which lessened my repetitions. It also increased my blocks.

Over time I began to see my speech techniques as viruses. Even my best attempts were mutating.

***

I’m a high-school junior performing with my school show choir.

I’m straining to hear the pitch pipe. The applause is ongoing, magnified by walls of concrete. The audience forms a semicircle around our stage. My family is seated in the center column, still clapping. I spot them through the stage lights—my older sister home from college, my uncle looking strange without his flannel and overalls. My parents, my grandparents, my cousins. They’re all looking at me. They’re all looking at me and I still can’t hear the pitch pipe. I look at the choir director, first in her eyes, then at her piano. I think, Give us the note. She positions her hands, mouths the word allegro—tempo, brisk. The applause subsides. My insides shake like the fading of a bell. The song we’re starting is a cappella, entirely in Latin. I look around the alto section.

The first note is ours.

I lean in, my eyes fixed on the director’s hands. She mouths the first phrase—Daemon ponit fraudes. She signals for a breath, watching the rise of our diaphragms, the swelling of our bellies. I count the time signature in her hands. Standard, four beats per measure. One, two, three—

Most of the year we sing show tunes, ballads, a wild rendition of “Rocky Top” that involves straw hats and orange bandanas. There is dancing and costume changes and songs the audience might recognize. We take our show to competitions, our skirts and gloves bright white, and return home with trophies. But not in the winter.

In the winter we wear black, glitter, velour. Our songs aren’t accompanied by tracks, just occasional piano. All we hear is the shift of the risers, the flow of chiffon, the clink of our dancewear against the hardwood. And our voices. In the end, it’s all about sheet music.

To find the first note I picture the sheet music. They’re eighth notes, two sets in a measure. The first note is a D. The second, C sharp. D again. C again. A musical seesaw. We rest for a measure. The sopranos crescendo and we enter again, this time quieter. Daemon! Daemon! Our notes are choppy, low, and deep, keeping rhythm with the tenors. Halfway through, the time signature changes. We shoot up an octave—acting as second soprano section. In aescatur, impinguatur dilatatur. God and the Devil. Flesh and stone. The last page is fortissimo—loud. We are resonating now. Words fall from my mouth and I can barely contain them, can’t cover the urge to sing faster and faster, to sing louder than everyone, to prove what I can do. Cordis Aestum non explebunt, non arcebunt. Let them hear me. Daemon! Daemon!

After the show there are hugs, bottles of water, a trashcan backstage of lipstick-streaked tissues. Some of us change clothes right then, but I don’t. I walk off stage in full dress, full makeup, willing performance magic to blanket me like snow.

Outside, my father pulls the car around. My mother and I wait. I watch warm air leave my mouth, mixing with the cold, building like a cloud. I think about how easily I could say something right now, say anything, how I could speak so fortissimo that birds would abandon their nest, their branches, thinking, this girl has something to say. This is the unexplainable side effect of being a person who stutters: we sing more fluently than we can ever speak.

Marilyn Monroe’s breathy trademark was actually the product of a speech therapy technique.

“I really loved that one song,” my mother says, pulling her scarf closer, “the one with no piano. It was about demons, I think.” She pauses, watching me twirl on the sidewalk in my heels. “What was it called?”

“The s-s-song?” I say, surprised by how quietly.

“Yeah, the song.” Behind her, I can see my father pulling up. “What’s the title?”

I stop twirling. “It’s called…D-D-D-D-D…” I see it in my head. Daemon Irrepit Callidus. A twelve-page arrangement by György Orbán. Say it, say it. “D-D-D-D-D-D…” I put my hands into fists, imagining words in my palm. I’m squeezing them, letting words fall from my fingers. “Damon…Damon…Irrepit Cal-Cal-Cal-Cal…”

Daemon Irrepit Callidus. I’m repeating it in my head. My mother is waiting patiently, as she almost always does. My father is waiting too, holding up traffic, though he doesn’t know why. I wonder if he considers honking, rolling down the window and calling our names. How easily he could do that—call a name, speak anything he wanted to into the air. My cheeks are flushing. I make myself stop, breathe. Start again.

“Calllll…” Come on, say it. “Callllllllllll….” There’s a pain in my throat, a burning one, from no air and no water and pure shame. “Calllllll…Callllll….” When will this end? “Calllll…idus.”

The word lands timid, erratic, and shaken, like a toddler taking a step. I doubt my mother has understood me, or can even piece together the fragments I’ve handed her. She nods and smiles.

“Thanks,” she says, “I’ll have to look that one up.” She puts a hand against the back of my coat, rubbing small circles against the fabric, and shepherds me into the car. She closes the door. I am thinking about how I felt during the concert—powerful, triumphant, different in a good way. And heard. I had felt heard.

In the rearview mirror, my father sees me crying but doesn’t ask why. He has a 16-year-old daughter with a persistent stutter. He already knows.

***

Julia and I have drinks at the hotel bar and decide to mingle. I stand back and observe, searching for a sense of community. Inclusion, understanding—this is why I’ve come to Atlanta. Still, I can’t help but imagine an invisible scorekeeper wandering the halls, eavesdropping on each conversation. Those of us with the severest of stutters receive the most points, the most patience.

It’s the opposite of our everyday world.

First we meet Steven. He’s a conference celebrity, likely from years of attendance and general enthusiasm for all things stuttering. On the back of his conference packet he collects our names, promising to connect on social media. At the banquet, he wears a black tux with a white, silk scarf.

We meet people from New York who stutter. There’s Stavros, who’s Greek and handsome, and Emma, a tall redhead who works in publishing. There’s Katherine, a British writer, and Marc, a cruise line performer. There’s Róisín, poised once again. They all know each other from previous conferences, or from the support group in New York. We follow them back to the conference room for board games and drinks, and everyone seems welcoming. Still, Julia and I stay together on the fringe, paranoid that we can’t compete with years of long history.

This is not how I imagined meeting 800 stutterers would go. A stream of names, of polite conversation, of stutters unique as thumbprints. Before long, the faces are gone or forgotten. Shouldn’t our shared stuttering make our bond stronger? I want to surrender my story, my burden—and share some of theirs. I want to experience something personal with dozens of different people, not realizing how impersonal that actually is.

I fall into a deeper silence at every failed attempt.

***

At bedtime my nephew chooses the hardcover collection of Thomas the Tank Engine stories, the font small and curved, pages thick as a bible. My mother has read it to him since he was a baby, since he could first hold a train. Now he’s almost five, entering preschool next year. He’s old enough to brush his own hair, brush his own teeth—but when I can, I like to do things for him. I’ll wash his face and while he squirms, I’ll say, “I love you…times two thousand.” He’ll smirk, eyes playful, and say, “I love you…times five.”

“Five?” I’ll exclaim, feigning shock.

“Just kidding, just kidding,” he’ll say, still smirking, “I love you…times three.”

This ritual—like building castles out of bath bubbles or using our hands and feet as telephones—can go on for a while. Though not nearly as long as reading him a story can take.

“Thomas again?” I say, and he nods.

“Can you read the one where Thomas goes over the hill?” he asks, as I’m pulling up a chair.

I flip through the book and turn it around. “This one?” He answers yes and falls into his pillow. I hold the page between my fingertips, scanning the paragraphs with dread.

For years the stories he chose were simple, allowing the use of silly voices and erratic rhythms—two of my best methods of hiding. But this particular story is new to me, one my mother has been reading him. It seems longer and more complicated than the rest.

“You sure?” I say, turning the page toward him again. He confirms yes, this story please.

As I read, I try all my tricks. I monitor my breathing, use accents, become very loud and then very soft. I stomp my foot and tighten my thighs. I hold the corners of the book until my skin turns white.

“‘Poor Thomas couldn’t answer,’” I read, halfway down. “‘He had no breath. He just…’”

Puffed. I stare at the P, shaped like a column. The longer I stare, examining the lowercase, the more it resembles a deflating balloon. Or maybe an elaborate cane, or upside down fishing line. I trace a P with my finger, picturing it as a fluorescent symbol in my head, burning white. I imagine the feel, the contact of my lips meeting. I can hear the sound of it—airy and natural, but forceful somehow. I think of all these things while my mouth is blocked, stuck in a loop of clicks and ums and pauses. I can’t make the sound come out. I look up, afraid my nephew is getting restless.

“‘He just…he just…he just…” I decide to improvise. “He just…drove slowly away to rest—’”

“Ray Ray, it’s not drove,” my nephew interrupts. “It’s puffed.”

I look at him, shocked and embarrassed. He smiles at me like I should be proud of him. He’s memorized the story. I smile back quietly.

“Good memory, bud,” I say. “Yeah…‘He just ppppppp….pppppppp….puffed away.’”

He nods, happy to be right. He doesn’t notice how I stuttered—or if he does, he doesn’t find it strange. I continue reading, with more and more disfluencies present in each line, until eventually the stage voice fades and my body eases into the chair, falls into a rhythm, until the only voice I’m hearing is actually my own.

***

There’s a spinning rooftop bar on the twenty-fourth level of the hotel and one night, Julia decides to see it. We wait in a long entrance line with hundreds of others from the conference. We see familiar faces, but none that wave us over. The line reaches from the elevator to the back lobby. We’re at the line’s end.

We talk while we wait, Julia and I, comfortable now after several nights of sharing a room. We discuss her family history, her last boyfriend, her exercise routine. I talk about my school, my roots in the South, and show her pictures of my nephew. The closer we get to the elevator, the more I notice a velvet rope, unclasped and open. But when the rope reaches us, a hotel clerk closes it.

My stutter adapts itself from repetitions to prolongations to blocks—so whenever I find a momentary “solution” for one form of stuttering, another one flairs up.

“Sorry,” she says. “The bar is at capacity.”

“No problem,” Julia says, more understanding than I am. “Do you know…when…it’ll be open again?” I watch her speak, admiring her methods, the control she has over her own voice.

“No idea,” the clerk says. “Whenever some of the others come down.” Julia nods, turning to make small talk with the stragglers behind us. She tries to include me, prodding with jokes and questions, but my cheeks are burning red. There’s a sudden gathering of people around us, shepherded by Julia. As much as I’ve spent the past week wanting to connect, I feel a stronger urge now flee, to be alone. Why had I come here? Back home, I knew almost no one else who stuttered. Now in Atlanta, I was confronted by hundreds of us—all at once. Their stuttering seemed to reveal my shame, seemed to say if we can accept our disability, why can’t you?

“I’ll be right back,” I tell Julia, walking quickly to the adjacent set of elevators. When the doors open and close, and I’m alone inside the glass cab, I lean against the railing and take a deep breath. I hit the tenth floor button, relieved to see the familiar, narrow hallway, and then, my hotel door.

When I enter our room the air conditioning hits me quickly, feels good against my cheeks. I take more deep breaths, grab a sweater, and drink a glass of water. I turn the television to a cooking show and lie on my bed, tempted to calm myself by falling asleep early.

But the bed beside mine, Julia’s, has a bottle of gin and a gray alien t-shirt. Her conference lanyard is folded on the end table. I look at these things, thinking about how much I admire her patience, her conversation skills, her wit. How just a handful of days have made us close. And I realize, in a moment of clarity that’s both obvious and profound, that I’ve spent the conference feeling like an outcast when in reality, I’ve made a very strong connection. My bond with Julia happened organically, serendipitously. Purely from a place of empathy and love.

When I go back downstairs, Julia is waiting by the velvet rope alone.

“W-w-w-where did everyone go?” I ask.

“They went on up,” she says, waving her hand dismissively. “I thought I’d wait for you.”

The clerk opens the rope and we’re ushered into the elevator, then inside the spinning bar. We each order a glass of merlot and start to mingle, our fellow conference goers more approachable than before. After an hour, I find myself talking to a music writer from New Orleans. Julia is drinking her third glass of wine, surrounded by a group of new faces.

We smile at each other from across the room. And then we keep talking.

* * *

Some names have been changed.
Rachel Hoge a writer living in the South, has written for The Washington Post, Bustle, The Rumpus, and more. Lately, she’s been hard at work on her first book about disability.

Editor: Sari Botton