What Will I Hear When My Ears Stop Working?

When I was diagnosed with a rare hearing disorder I embarked on the unusual mission of preparing to go completely deaf—while archiving the sounds I never want to forget.

What Will I Hear When My Ears Stop Working?

What is silence? To most of us, it is found in temporary absence of sound: the quiet nights of sleep in suburban neighborhoods; the demi-beat before a pianist pounds the ivories; and the pause one takes after receiving bad news. In our world, silence is also abstract. It is the hush that blankets a city devastated by disaster. But silence – true silence – is neither poetic nor dramatic. For those who can no longer hear, it is constant and formless.

I think about this a lot. I imagine the experience of eating without sound, of muted mastication. I wonder if not being able to hear my own breath would unground me from my yoga asana. I think of all the shouting conversations in bars I wouldn’t have to listen to. But most of all, I think of what sounds I want to remember when I can no longer hear. The tap-tap of my fingers, busy writing on a keyboard. The waves along Hong Kong’s beaches at high tide. The hiss of a bonfire. The buttery tail of bassoon notes introducing Tchaikovsky’s Symphony No. 6. The voices of my family.

Hearing loss runs in my family and I was born unable to recognize high frequencies. I also have ‘exploding head syndrome,’ a parasomnic condition in which phantom electric bells and explosions sometimes invade my head before and after sleep. And independently, I was diagnosed with Ménière’s Disease (MD) three years ago, a disorder that causes imbalance in the membranous labyrinth of the ear. This collection of syndromes and disorders is frightening and probably means I will be deaf by my early forties, although the unknown haunts me more: The ways that Ménière’s can consume a person lies in an individual’s character and life choices. Random MD episodes result in temporary deafness and progressively severe and permanent hearing loss, and preceding symptoms includes vertigo, tinnitus, otolithic crises of Tumarkin (sudden, paroxysmal falling to the ground) and debilitating headaches. My very first conscious meeting with this disease came one night three years ago, while I was watching “Good Will Hunting, alone. Having never seen the film before, I was disturbed to witness a completely mute Matt Damon dissolve into tears. He seemed to be sobbing, but I couldn’t hear a thing. I was diagnosed with MD a few weeks later.

Now, dietary fluctuations like an excessively salted dinner or springy glutinous pasta will cause mild tinnitus, and leave my ears ringing before I have even cleared the dishes. I have learned the hard way about the fickleness of this disease, and its negative reactions to emotional strain, stress and anxiety. But how can I not be scared? Like the bangs that creep into my head at night, I expect the shock of hearing loss to be sudden and profound.

More than that, I fear the day when it will just be me and the silence.

What Matt Damon taught me in that moment of muted emotion three years ago – him, sobbing and soundless on the screen; me, panicked yet silent – was how lonely deafness can be. There was a wall erected, very suddenly, between me and the rest of the world: one that absorbed and diminished the sounds, the messages, the music that I had taken for granted.

I was temporarily deaf that night — and the days and nights and weeks that followed — until it became a full month of deafness and I had forgotten what it was like to not even think about hearing or not hearing.

I vacillated between terror and existentialist calm, not knowing when it would end or even if there was an end. When, finally, I was diagnosed with MD, there was little relief but a sort of understanding started to percolate in my brain. I began to think of the auditory language in my head that, all this time, had not really been quiet. I still heard things; I just didn’t hear them from the outside. Where did they come from and how did they get there? How was my brain responding to the sudden deafness and what was it trying to tell me?

After a month, my hearing recovered, but the thoughts stayed. I began to pluck out memories from my childhood, my own stories of hearing and sounds that would perhaps reveal to me my brain’s workings, and its reaction to deafness.

Between the ages of eight and ten, I was enrolled in dictation lessons at my British grammar school in London. The class was meant to improve real-time transcribing skills; a teacher would recite stories and texts, and we were marked on our accuracy. My mishearing, misinterpretation, became my humiliation.

“Look at what Ysabelle wrote!” a classmate screamed with glee during a peer-to-peer review session. “She’s crazy.”

Instead of “sometimes the jogger,” I had written “Sunshine, the dog, heard,” because the teacher would dictate while walking around the room instead of in one fixed location at the front, facing us. I didn’t know it at the time, but from an early age I had developed an ability to lip-read in order to compensate for minor hearing loss. I was described as a problem child, written off as “schizophrenic in temperament.” My report cards listed me as an attentive, if not intense, student when a teacher spoke facing me, and then listless and disconnected when they, or I, faced away. I was unresponsive to even friends sometimes, and so eventually, I had only one or two. Often, I couldn’t (and sometimes, still can’t) hear my own name: Ysabelle. The stress falls on the first syllable – the sibilant “s” that my ear never managed to picked up, along with “f.” This is also why I have a vague speech impediment.

At age eight, I was confused and had trouble understanding the relationship between my body and brain. I recalled this anecdote of Sunshine and joggers to a partially deaf poet, Sarah Katz, whom I spoke to one evening over Gchat.

She laughed (meaning, she sent the written equivalent of a laugh: “hah”) in recognition. “As a deaf person, I mishear words all the time and I try to keep a list of these misheard ‘words’” Katz says. “Sometimes I’ll use the image of something I misheard to start off a poem, or I’ll imagine something that’s happening when I can’t actually pinpoint or name a sound. I think misheard words signify our tenuous relationship to sound – not just for the deaf person, but for all people.”

I hadn’t met Sarah Katz before, but in trying to understand my own imminent deafness and how to cope, I reached out to several people who were either partially, or fully deaf. And although my conversations with them were brief and fleeting, I found odd coincidences, tied to much more than just medical similarities, between my stories and theirs.

Katz is the same age as me. A complication at birth caused her hearing loss as a child. She lost further hearing at around age eight and attended a public school with a deaf and hard-of-hearing program. She and her family are also fluent in Cued Speech, a visual communication system comprised of mouth and hand movements that renders sound 100% visible: you can ‘hear’ without hearing. She now wears a hearing aid, and says her deafness is “dipping into the severe range.”

Katz’s poetry collection, “Country of Glass,” touches upon deafness and the difficulty of communication, among other themes. However, when I speak more with her about this, I sense that in her internal network of symbols and signs, there is a powerful brain at work that connects external noises, even when the sounds do not always reach her ear.

Just as I had unknowingly developed the ability to lip-read as a child, Katz’s compensatory ability to recognize and associate visual cues with memories of sound was seeded when she was young. Katz used to sit on the porch of her family home with her mother and classify bird species by their songs. “We talked about blue jays, crows, red cardinals – all birds at our house – and what sounds they made. So, for example, crows make a ‘caw caw caw’ sound and they’re black,” she says. With her father, Katz developed a love for music. She remembers the songs she used to sing in the car on the way to school — the Beatles, Captain and Tenille’s “Love Will Keep Us Together — singing a cappella, because she had trouble distinguishing lyric from music when listening to the radio.” Katz wears hearing aids on a daily basis now; she can no longer hear naturally the sounds she heard as a child. But her memory of these sounds is clear.

“A common complaint for those with hearing loss is they can tell people are talking, but it sounds like people are mumbling,” says Doctor Tracy Peck Holcomb, the director of Clinical Services at the Hearing and Speech Center of Northern California. I had reached out to her for clarification on archiving and recognizing ‘lost’ sounds and tones. “The ears and brain are not able to fine-tune sounds enough like a normal working system would to achieve clarity – these sounds are ‘lost.’  But our auditory memory still ‘remembers’ some of these sounds, and we are also very good at using other cues to help us figure out what is being said. Even if one loses hearing function, they still recall what that might sound like.”

One of Dr. Peck’s patients, a 51-year-old writer named Erica Sandberg, also has Ménière’s Disease and is the first person I have spoken to with the same condition. Like me, Sandberg frequently experiences a particularly disruptive symptom, tinnitus – described as a loud ringing or buzzing in the ear. To counteract this, Dr. Peck prescribed sound therapy: for several hours a day, she plugs ‘brown sounds’ (low tones) into Sandberg’s ears through headphones. This particular therapy is part of ongoing research into the relationship between brain and ear. In one of the most recent papers, Doctor Hidehiko Okamoto of the National Institute for Physiological Sciences in Ozakazi, Japan, and his colleagues suggest that listening to tailor-made playlists actually increases brain activity in replacing and giving back these ‘lost’ sounds. Although this research is still fairly new and relatively untested, the idea, to me, is radical: To stop hearing loss, we need to listen more.

“Apparently I’ve lost certain tones and my brain is going into overdrive trying to replicate them,” Sandberg explains to me. “The human brain is programmed to expect certain tones, and when it doesn’t, because of hearing loss, it tries to recreate it – hence the tinnitus. So now when I hear tinnitus, I talk to my brain – “Honey, you don’t have to do that! I’ll give you the sound!” – and I put my earbuds in. It’s like I’m feeding my brain.”

Unlike Katz, Sandberg experienced hearing loss later in life. She grew up in a large, loud family and thrives in environments of bright noise and cacophony. As a writer and reporter, she regularly appears on television as a public figure. Eight years ago, she was watching “The People Under the Stairs (a B-grade horror film) one evening with her family when a slow, grinding hum began in her head, replacing all other sound. “Like an air conditioner,” she says. “I had no idea what was wrong with me. I went to every ENT in San Francisco and San Diego – one older doctor told me to get used to it, that I’d be deaf before long. I saw acupuncturists, neurologists, allergists…I even had a pastor pray with me over the phone —and I’m an atheist.” Eventually, she was diagnosed with MD.

Sandberg fears silence the most – the blanket absence that will assail us one day as an unknown and uninvited visitor.

Katz tells a similar story. “The silence I encounter when removing my hearing aids at night has grown more and more present,” she says, mentioning that often she has to keep the aids on to be comfortable enough to sleep. “This has led to a nightly experience of ‘derealization’ — the sense that my environment is not ‘real.’ Ultimately, slowly losing my hearing has made me aware of how much stock I put into my hearing to give me a sense of embodiment.”

I ask Sandberg about this. Her answer is short.

“I’m an avoider. Just the thought depresses me,” she says. “I don’t want to be left alone inside myself.”

Like Katz, I too am comforted by rhythm and music. I trained classically in both piano and cello and although I no longer have time to practice, one memory I’d like to keep is the plonk of my finger on a key or the pull of the bow that arrows a sound directly back into my body. I repeatedly listen to songs and instrumentals that feature lower registers and contrapuntal, rhythmically complex melodies, something that is both a habit and now, a remedy for eventual hearing loss. When I speak to Dr. Okamoto on the phone about his research, he tells me that classical music is the most comforting for people who experience sudden hearing loss and tinnitus – there is something about the structure and formalities that soothes. This explains why, on days when I don’t understand my ears or the sounds outside are muffled, I calibrate the volume levels on my iPod so that it is only me and Mahler for an hour or so.

I haven’t had an episode of deafness since the first attack three years ago, but symptoms of MD still occur, and will continue to occur. I am visited by tinnitus frequently and when I am especially exhausted, physically and mentally, I notice myself not being able to hear properly again. Or perhaps my other functions – the lip-reading, analysation of body language, conclusions drawn from logic – are tired and fall away from the front line. When this happens, I try to work with my brain rather than against it, like how Erica “feeds” hers when she knows it’s trying to help out. Recently, at a dinner party in New York, it felt like my ears were being washed in electricity, the buzz of tinnitus masking the table talk. I was trying hard to puzzle together the conversations, but my exhaustion was foiling those efforts.

A friend across the table asked me: “So, how do you like ___?” The last word, to my ears, sounded like ‘shampoo.’ Which, of course, is not what she had said; it couldn’t have been. My brain began to panic, sifting through memory after memory in a rolodex of sounds – what could that word be? Have we heard it before? How did her lips move? What noises did she make? My friend, and the rest of the table, waited patiently for my answer. I did not have one and told my brain: Here, you can have a break. I laughed.

“Sorry, I just paused because – I sometimes can’t hear things very well and just now I heard you say ‘how do you like shampoo?’” I confessed. “I was trying to figure out what you had actually said, but I can’t.” I was honest; the table guests laughed, and my friend repeated: “How do you like Brooklyn?”

The point is not to understand it all, because the truth is that I can’t. My relationship with sound is volatile – I hear it when it’s not there, and I can’t hear it when I would like to. The only control I have over anything is to listen harder, to try to archive already fading sound memories like my baby sister gurgling at bath time, or one of the dozens of singing-bird music boxes my grandfather used to collect. Or maybe simpler, humbler sounds of the everyday: a glass of water being poured. A clock ticking. A sneeze. Katz says she would record the sound of her feet hitting the ground and her own breath.

I can’t help but think of the inevitable silence of my future, but whenever I do, I also remind myself of the sound archive I am building. Right now, at 26 years old, I guess I’ll miss silly millennial sounds the most, like the Skype ringtone alerting me to a friend far away getting in touch, or the rush and roar of planes, trains and buses, of a mobility that signals my independence. But as I grow older and MD continues to shape me, or perhaps the other way round, there will be other sounds and other memories that overtake these sounds, because an archive is never endless. Still, I wonder about the ways my brain, and my body might collect the silent messages of the world when I am deaf, matching them up in my internal archive, the neurons firing spectacularly, and produce a sound in my head again – as if I were hearing it anew, for the very first time.