CHAPTER ONE
No one knows my deafness as well as I do. There isn’t a single test that can truly get inside my head and understand how I’m experiencing the world. Doctors, parents, and strangers like to chime in with their assumptions. But after seventeen years, I’m still figuring it all out.
My annual audiology appointment is every January. My mom and I are driving through melting mounds of snow to get there. She won’t let me do this alone because she doesn’t trust me to be on top of things, especially after I got my fall semester report card this morning.
“We agreed you could stop using the FM system so long as your grades didn’t slip.” It’s not the first time we’ve fought about this wireless device I’m supposed to use in class. My mom stares straight ahead as she drives down the highway, and I have to crane my neck to read her lips. “Are you proud of getting straight Cs, Lilah?”
“Half of my teachers practically refused to wear it anyway,” I mumble. “It’s too much of a hassle.”
“Then you have to remind them to use it.” She sighs, and says something about “———— outlined in your IEP.”
“It isn’t in there?” I ask, not sure I’d heard correctly.
“It is,” my mom repeats, turning to face me. “So you need to use it. We didn’t pay for it to sit in a case all year.”
I wanted high school to be different, but these past few years have been rough. When my teachers use the FM system, it brings their voices directly into my hearing aids, making their words louder but not necessarily clearer.
All these necessary accommodations bring attention to me, which I hate. So instead of pointing out that I need closed captions whenever we watch a video, I sit there quietly. I don’t catch most of what’s being said, and I fail the quiz on the material afterward. Plus, teachers accuse me of “talking during class” whenever I try to ask the person next to me to repeat what the assignment is—after struggling to follow the lesson in the first place. So, I get another bad grade. Every day is exhausting.
“And you’ve been skipping your group meetings with the hearing itinerant?” my mom asks.
Those are . . . not fun. An hour each week, I’m forced to learn how to “advocate for myself,” which often boils down to a reminder to sit in the front row.
“How am I supposed to get better grades if I’m pulled from class?”
My mom can’t think of a response to that one. She clenches her teeth and turns carefully into the hospital’s salt-covered parking lot.
We wait in the lobby for my audiologist. A toddler fitted with two large hearing aids runs across the room. His parents are trying to hide the fact that they’re observing me closely. I’m used to the stares, especially here, since I’m one of the oldest patients at this children’s center. It’s possible this kid and his family have never seen someone my age with hearing aids before. They wonder what he’ll be like when he grows up. When I was young, I didn’t really know any older deaf people, either.
Until I went to summer camp.
My audiologist brings us back for my hearing test, and I take a seat in an office chair positioned in the middle of the dark-gray enclosed sound booth. This space doesn’t exactly scream comfort.
To the outside observer, this may seem a strange little room. There’s a creepy animatronic monkey on the shelf in the corner, with its cymbals hanging lifeless since it’s used when testing little kids. The wide metal door to my right seals this chamber shut.
I wish I were alone. Instead, my mom sits on an identical chair against the back wall
holding her purse, silently observing. I steady my hands together in my lap, resisting the urge to crack my knuckles.
My audiologist, Ms. Shelly, a cheerful presence throughout the years, has me remove my hearing aids. They’re now sitting on a tissue at the side table to my left. She leaves the booth and takes a seat in the other side, looking at me through a small window. She turns on background clatter and loud crashing sounds, supposedly reminiscent of daily life surrounding me, as I struggle through the chaos to decipher words she says into a microphone.
“Say the word ‘baseball.’ ” Ms. Shelly’s voice is initially set loud enough to rival the noise.
“Baseball?” I answer, my voice funny in my throat. I suspect I whispered my response. People tell me I speak too loudly, but whenever I’m focused on the volume of my voice, it comes out too quiet.
I cough to clear my throat, wondering why I’m nervous. I’ve done this every year of my life. It’s nothing new.
“Say the word ‘hot dog.’ ”
“Hot dog!” Whoops, sort of yelled that one. I need to settle into a happy medium.
The chair scratches my thighs as I shift to relax my shoulders and stare ahead. But my audiologist is holding an envelope over her mouth so I can’t read her lips. She keeps gradually lowering the volume now, so it’s projected at a level that isn’t necessarily comfortable or effortless to hear. “Say the word ‘ice cream.’ ”
“Ice cream.” I’m still confident enough in the words to repeat them.
But it gets more difficult. Ms. Shelly increases the background noise, and I almost can’t tell if she’s still speaking. She’s being drowned out by the roar. From the familiarity, I recognize, “Say the word ————.” Yet I can’t make out the rest.
I scrunch my nose and tilt my head to the side. Definitely didn’t catch this one. It was . . . no. I’m supposed to give my best guess, but I can’t even think of a word similar to what I heard. A hint of frustration rises within me.
It’s my hearing being graded, not me.
This is the point in a typical conversation where I’d proclaim my most often used word—“what?”—as many times as it’d take for a person to get their message across. It’s best when someone can switch up their wording to help me along. The greater the context, the more likely I am to pick up on what I’m missing.
However, right now, there is no context. Only background noise and an elusive word. At least this is better than the frequency test. I swear by the end of that one I’m imagining beeps that don’t exist.
I give up and shrug.
What’s another failed test at this rate?
Ms. Shelly continues. Another twenty or so words later, she finally puts down the envelope and gives me a smile while shutting off the background noise and returning her voice volume to full blast. “Great job, Lilah. We’ll move on now.”
She enters my side of the booth, her laminated ID badge dangling from her neck, and sticks various diagnostic tools in my ears and on my head. Throughout several rounds of different examinations, I suppress the urge to compare this to an alien abduction.
When it’s all over, Ms. Shelly returns and leads us out of the soundbooth and over to her office, where I usually get fitted for new earmolds and have my hearing aid levels adjusted. We take a seat around a small side table. My mom pulls her chair forward so they can crowd together over my results. I sit back, a little anxious, though there hasn’t been any reason to be yet. My hearing loss, which I’ve had since birth, isn’t supposed to be degenerative.
My mom frowns at the printout. I scramble to push in my hearing aids, looping the backs over and behind my ears. Wearing them helps, but they’re never going to be a perfect fix. What people don’t understand is that when I’m wearing my hearing aids, there’s still a lot that I miss. And without them, there’s still a lot I could catch by relying on lipreading and deductive reasoning.
We peer at the audiogram as my audiologist points to the zigzag lines trailing downward along the bottom half of the graph. The results for my left and right ears are close together, a fairly even loss across both sides.
“So we have a small dip since last time,” Ms. Shelly explains seriously, but then she smiles. “I wouldn’t be too worried about it.”
“All the more reason for her to use her accommodations for school,” my mom says.
“There is a newer FM she might prefer.” Ms. Shelly reaches back to her desk to get a pamphlet for my mom, bypassing other ones that showcase different hearing aid brands or earmold color options. “Look how cool! It’s sleek and modern.”
But I don’t care. While they discuss the pros, cons, and cost of a newer model, bemoaning the lack of insurance coverage, I stare back at the audiogram. I’ve always wondered what an additional loss would feel like. I’m not upset about it. If anything, I’m annoyed it’s not more significant.
To hearies, that may seem weird. I can’t really express why I feel this way, other than
it might be nice to not stay caught in between. Like, if I had to choose between being fully hearing or fully deaf, I’m not certain my decision would be obvious.
And maybe, if the loss were profound, my family would be forced to finally take learning American Sign Language seriously. I’d seem “deaf enough” that my classmates would truly understand my need for all those school accommodations, rather than silently judge and question me. Because right now, they know I’m not hearing, but I don’t fit their expectations of deafness, either.
It’s a strange realm, here in the middle.
Since I’m overdue for a new set of hearing aids, Ms. Shelley gets out the supplies to create earmold impressions. I sit still as she squeezes cold pink goo into each ear. In a few weeks, I’ll come get the molds and processors when they are ready and assembled. It will take wearing them awhile for my brain to adjust to the latest technology and for the world around me to sound like I’m used to.
I’m not ashamed of my disability or anything like that. What bothers me is trying to fit into the hearing world. That I’m constantly the odd one out, the one who always has to explain or adjust.
I can think of one place where I didn’t feel this way: Gray Wolf, a summer camp for the deaf and blind. I stopped going after eighth grade, since leaving for an entire summer didn’t really fit into my plans once high school began. But it was a unique place where I didn’t have to explain my hearing loss to anyone. And it was my introduction to sign language and Deaf culture.
I’m starting to really miss it.
CHAPTER TWO
Two months later, our school has a half-day Friday to kick off spring break. My friends and I are sitting at a metal table outside Mackie’s. We’re enjoying the spring weather, which is unseasonably warm for the Chicago suburbs. I gather my long brown hair and tie it up with a purple ponytail holder. We’re trying to figure out how to start off our vacation, but hunger and exhaustion from a morning full of exams has us parked here for lunch.
Kelsey takes a big bite of her chicken sandwich, putting a hand over her mouth to finish speaking while she chews.
“What?” I ask, leaning forward. It’s times like these that remind me how much of my hearing is supplemented by lifelong lipreading skills.
“No,” my other friend Riley says. “Not that one.”
Kelsey takes a big drink of water and tucks her blond hair behind her ears in a feeble attempt to stop the light breeze from blowing it in her face. She hasn’t repeated what she said yet. I’ve hardly touched my cheeseburger and have to swat away a pesky gnat that won’t leave it alone. I turn to Riley instead and ask, “What’d she say?”
Having someone else repeat for me helps sometimes. Even if they aren’t any louder, I might understand them better if they are closer to me, enunciate more clearly, or have more familiar lips.
But Riley doesn’t echo exactly what Kelsey said. She unbuttons her shirt, tying it around her waist to sit cooler in just her tank top, and reaches for lotion from her bag to soothe her dry, white knuckles. “We’re trying to figure out what movie to see. It’s too hot to hang out outside.”
I knew that much. What I still don’t know is what movie options are being discussed.
“Is there even a showing soon?” Kelsey asks. Both girls pull up their phones to check the times, so I do the same but get sidetracked on Instagram.
In the midst of a Deaf-identity crisis after my audiology appointment, I’ve recently started following a ton of ASL accounts to restore my diminishing sign language skills. Fortunately, I remember a bunch from my time at Gray Wolf, but the reality of how much I still have left to learn is hitting hard. At least I know enough that I can determine if an account has a fluent Deaf teacher or an unqualified hearing person giving inaccurate lessons.
Even though I remember summer camp being a welcoming place for kids from all backgrounds, it can be hard to reconcile that with what I’ve seen on the internet—people arguing over speech, sign, culture, devices, and more. Sometimes it can seem like all I truly know is that I’m not hearing. I could spend days scrolling through conflicting takes of people within the community debating semantics as I settle deeper and deeper into impostor syndrome. People give too much power to labels. It can feel exclusionary, whether intentional or not.
“How about something”—Kelsey says—“like, uh . . .”
“What?” I ask again, my mouth jumping to the word before my brain can piece together that she said “like, uh” and not “Li-lah.” I shake my head in response to the blank stares from my friends. “Never mind. You two pick. As long as it’s something fun.”
“Okay, let’s do the superhero one,” Riley says.
My burger is cold, but I take a few final bites. Kelsey always sits up front in Riley’s car, so I climb into the back and stare out the window the entire way, since it’s impossible to hear them over the noise of the vehicle and the radio.
At the Regal, Kelsey and Riley buy their tickets. When it’s my turn, I step forward and
say, “The same one they got.”
The guy at the booth nods. I reach for my wallet once the price lights up on the register and slide the cash beneath the glass. He gives me the change and says something I don’t catch. But my friends have stepped toward the door and are scrolling through their phones.
“What was that?” I ask him.
He repeats what he’d said, but I can’t hear it or read it on his lips since he’s behind a computer screen.
“I’m sorry, what?” I point to my ear and then the glass. I try to get my friends’ attention.
Kelsey steps forward. “What’s up?”
“Can you tell me what he’s saying?” I ask, gesturing back to the window.
But the worker rolls his eyes, pulling the ticket from the printer and handing it to me. He dismissively waves me away as he tosses the receipt in the trash.
“Never mind,” I tell Kelsey as we head inside the building. Of course it was about the receipt. I should have just defaulted to “no, thanks” and moved things along for everyone.
At the snack counter, Kelsey gets a slushie and Riley asks for Junior Mints. I don’t want to spend more money, but I’m starving and will need popcorn to get me through the next three hours of explosions and indecipherable dialogue. There’s no way I’m renting a pair of those sticky and hideous captioning glasses that theaters offer as an excuse to not put captions on-screen. They’re the last thing I want on my face when I’m out with my friends. The machine doesn’t work most of the time anyway.
While waiting for me to get my food, Kelsey and Riley run into some other kids from our school, so they once again aren’t with me to repeat anything the cashier says.
“One medium popcorn, please.” I hand over the money to the girl behind the counter, who then asks me something.
“No, thanks.” I smile. I don’t need the receipt, so I’m not going through that whole ordeal again.
She turns around to fill the container, and then hands it back to me along with the receipt. I walk away and grab a handful. Crap. What I’d said no to was the butter.
I join my friends, too irritated to bother figuring out what everyone’s discussing, especially since there seem to be two separate conversations happening across the circle.
I nudge Riley. “Hey, should we get to our seats?”
“Yeah, sure,” she says, turning to get Kelsey. “Let’s go. I don’t want to miss the trailers.”
Riley and Kelsey lead the way to our seats and sit side by side, leaving me at the end of the row. “Do you mind if I sit in the middle?” Still standing,
I offer up my snack. “I can share.”
“That’s okay,” Kelsey says, staying in her spot between Riley and me. “I’m so full.”
The lights dim and the first trailer starts. “Ah yes!” Riley points to the screen, saying something excitedly toward Kelsey and me.
I plunk down and stuff my face with popcorn.
A few times during the movie, I nudge Kelsey and ask, “What’d they say?” But she either repeats it staring straight at the screen or whispers it directly into my ear. Neither works, because I can’t hear her when she’s facing forward or read her lips when they’re beside my ear.
Ah well, whatever. The superhero is saving the day; that much is obvious.
“You’ve been quiet,” Kelsey tells me once we emerge from the theater back into the daylight. “Are you all right?”
“Yeah,” I say, attempting to shrug off the listening fatigue. I’m exhausted and ready for a nap. “Do you guys want to do something next week?”
“Sure,” Kelsey says. “I just can’t on Monday ’cause I’m going into Chicago to interview for that summer internship. ...
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