Diagnosis Teshima: On Hearing Loss, My Son, and the Sea
There’s the lingering fear that I’ll no longer be able to hear my son’s voice.
The dark room was lined with mirrors and lit by the beating of my son’s heart. He’d fallen asleep, so I held him in my arms as my wife Ayako and I stood quietly. We watched his heartbeat illuminate, in flashes, the single light bulb that hung suspended from the center of the ceiling, and listened to its rhythm pulse through the speakers. It was so loud even my deaf right ear could hear it.
Les Archives du Coeur , the Heart Archives, is an art installation created by artist Christian Boltanski. It sits in a small building on the shore of Teshima, an island in Japan’s Inland Sea. The facility—which at first glance resembles a doctor’s office, its clean white reception room staffed by friendly women in white lab coats—features rooms where you can record and upload your heartbeat to the archives, computer terminals where you can browse and listen to thousands of other heartbeats, and the long, dark room where the beat of a single human heart is turned into light and music.
Les Archives du Coeur, Teshima
We had first heard our son’s heartbeat nearly three years to the day before, in a small clinic in my wife’s hometown of Ashiya, on the other side of the Inland Sea. On the sonogram screen that day, our son looked like little more than a black smudge, a Rorschach test for us to imagine into a future infant, toddler, child, teen, adult. But his heartbeat came through clearly in a sharp staccato: a steady beat nestled inside a rushing whoosh like the sound of the ocean in a conch shell held up to your ear.
I remember holding my breath as the sound of his heartbeat filled the room, exchanging smiles with Ayako and feeling an intense surge of different emotions—mostly joy and anxiety. I recognize now that it was the first of many such moments: the first time I held him (“He’s so beautiful, what if I drop him?”); his first words (“He said, ‘uh oh’! Wait, why did he say, ‘uh oh’?”); his first steps (“He’s walking! Now he’s running away!”). His heartbeat was the sound of us entering a new and unknown phase of life.
A year after we first heard our son’s heartbeat in the clinic, I woke up one morning and heard silence on my right side. I write “heard” because the sudden absence of sound was as clear and startling as a siren. I didn’t worry about it at first, assuming it was wax buildup or my ear stopping up from a recent flight. That had happened before. My hearing always came back.
But this time it didn’t. Days later, I still couldn’t hear out of my right ear. My son was six months old now, a chubby, happy baby full of giggles who had an adversarial relationship with sleep. I was scared: What if he called out in the night and I couldn’t hear him? What if something happened to him and I was just sitting there, totally unaware?
At an audiologist’s office, a woman in a white lab coat led me into a dark, soundproof room and conducted a series of hearing tests. I pushed a button when I heard a beep. Voices spoke words into my ears—first right, then left—and I repeated them. Distracting sounds (beeps, whooshes, static noises) were played over the voices, to test how well I could distinguish sounds. When the tests were over, I waited nervously, as if I were a college student waiting for my midterm grades. The results weren’t good. My right ear had only heard 30 percent of the beeps and words: severe hearing loss. My left ear fared better, but at 70 percent it still had moderate hearing loss. Probably genetic, the audiologist said.
The ENT doctor decided to inject steroids straight into my inner ear, an attempt to jump-start the tiny hairs that form the basis of our sense of hearing. If the hairs are damaged, the doctor explained, they can’t regrow; if they go, the sound goes with them, like a radio switching off. Having a long needle stuck into your inner ear and then having the cavity flushed with steroids is precisely as unpleasant as it sounds. After a few months of injections and audiology tests, the doctor told me the steroids hadn’t worked: I would have single-sided deafness for the rest of my life.
I’d never been to Teshima before our visit this past November, but it felt familiar as soon as we stepped off the ferry. Ten years prior, I’d lived in a small town called Toyotama on the Japanese island of Tsushima in the Korea Strait. Teshima’s small farms and fishing villages felt like home to me. The two islands share something else: Teshima, like Toyotama, takes its name from the Shinto goddess Princess Toyotama, daughter of the dragon-king of the sea.
In Japanese mythology, Toyotama marries a hunter deity named Yamasachihiko. After years of living in her coral palace at the bottom of the sea, with her sea turtle and jellyfish attendants, they move to the land. Toyotama becomes pregnant and warns her husband not to look at her as she gives birth to their son. He does anyway and sees her in her true form: in some versions, a shark; in others, a dragon. Betrayed, Toyotama returns to the sea.
Watazumi Shrine, Tsushima
Ayako found a tiny shrine to Toyotama tucked away in one of Teshima’s villages, where we stopped and paid our respects. On Tsushima, where I’d once lived, Princess Toyotama and Yamasachihiko are venerated at Watazumi Shrine, an ancient waterside site with three torii gates leading to the shrine buildings (where the gods are embodied, typically, by a sacred mirror) and two more out in the sea, where they seem to float at high tide.
I used to visit the shrine frequently on weekends; there weren’t many other places to go in town, and the beautiful grounds provided a favorite spot to sit and read. I’d often find my students fishing there, or see families having picnics when the cherry trees were blooming. Once, I saw a crimson Nomura’s jellyfish the size of a washing machine floating just offshore.
Sometimes I daydreamed about walking through the floating gates and into the water, down, down into the deep to find Toyotama’s palace. I imagined standing there in the abyss among swaying seaweed, my lungs screaming for oxygen, my ears bursting from the pressure, trying to catch a glimpse of those coral walls and otherworldly lights.
My son Liam is two and a half now. His favorite Sesame Street bit is the one in which an increasingly frustrated Bert tries to tell Ernie he’s got a banana in his ear, until Ernie finally shouts, “I’m sorry, you’ll have to speak a little louder, Bert! I can’t hear you! I’ve got a banana in my ear!” Whenever he gets his hands on a banana, Liam holds it up to his ear and giggles, and we act out the skit until he yells, “Banana ear!”
I feel a little like Ernie these days, only nobody can see I’ve got a banana in my right ear. People call to me and I don’t hear them until they’re right next to me. Sometimes I don’t even hear them then, and they have to tap me on the shoulder—which scares the hell out of me. I can’t tell where individual sounds come from, either. You can find me in the lobby of my office building every morning, pirouetting like a confused ballerina as I try to figure out which elevator has dinged open.
I dance around people to put them on my left, where I can hear them better. I’m lost in crowded restaurants and noisy bars. It feels rude to tell people I’ll never understand what they’re saying because it’s too loud, so sometimes I just smile and nod along. Once, in the middle of the night, Ayako woke me and asked, “Did you hear that?” Like the world’s most doomed horror movie protagonist, I answered, “No.”
But life with hearing loss is also familiar, in much the same way Teshima was familiar. Not understanding most of what people around me are saying is something I’d gotten used to in Toyotama. I became adept at piecing together the meaning of a phrase from a few understood words, context, and body language. I found communication easiest with my elementary school students, even though they understood little of my native English; their Japanese vocabulary was limited, too (though still far, far better than mine), and they conversed as much through playing as talking. One day during recess, as I was failing to explain something in my broken Japanese to a group of increasingly distracted students, a girl named Nanami snuck up behind me and lightly smacked me on the head, then ran laughing across the field. The frustration I’d felt trying to communicate popped like a bubble as I chased after her. I couldn’t talk to those students about much, but I could play tag with them, and that was its own kind of conversation.
So much of how Liam interacts with Ayako and me now is through play—playing with his train set, or playing tag in the basement, or pretending his bedroom closet is the beach and we’re going swimming. It can be a relief to communicate in ways beyond words. I sometimes have trouble understanding him, too, because of my deaf ear, and sometimes because he’s speaking a language all his own. Just the other day he said something to me, and no matter how hard I tried to figure it out, all I heard was, “Charlie says a hair.”
Some days I envy how quickly and easily my son learns both English and Japanese. Language is like a plaything for him. He assembles speech the way he does toy blocks: excitedly and imaginatively, if sometimes haphazardly. He loves to sit and flip through books and read a story out loud to himself in a way only he can understand. He learns the word “alligator” one day, and the next he’s shooing imaginary alligators out from under the bed with a Swiffer: “Go away, alligators!” I still struggle with my “conversational” Japanese. Now, with my hearing loss, I even struggle with conversations in English.
I’ve adjusted to living with single-sided deafness, but I still worry I won’t hear something dangerous, or important, or adorable. And then there’s the lingering fear that one morning I’ll wake up and my other ear will have suddenly gone out, too, and I’ll no longer be able to hear my son’s voice—or his laughter, or his heartbeat, which fill me with electric joy every time I hear them. But for now, I try to take in his words and sounds the way he does: excitedly and imaginatively, if sometimes haphazardly.
On the ferry back from Teshima, I chased Liam around the deck and then tried to help him settle down by looking out for whales and dolphins. At one point, he pointed to the water and said something to me. I couldn’t hear him, so I leaned in close, my left ear right next to his face, and asked again what he saw.
“Big shark in the water, Dada!” he said.
I didn’t see a shark, but I found myself imagining he had seen Princess Toyotama, circling her island and surveying her watery domain. Now, when I daydream about her palace at the bottom of the sea, I picture swimming down through swaying seaweed, my lungs screaming for oxygen and my ears bursting from the pressure, until I glimpse coral walls and otherworldly lights. Inside the palace is a white lobby like a doctor’s office, staffed by friendly sea turtles that lead me into a dark room with sacred mirrors and a single light bulb, fat and luminescent as a jellyfish. For a moment, the darkness and silence are complete. And then the room is full with my son’s heartbeat, bright and loud, a sharp staccato nestled inside the rushing whoosh of the ocean.