A Deaf Woman, a Risky Surgery, and the Chance to Hear for the First Time … At 39

"What if it goes wrong?" says Mom. But what if it doesn't?

july aug 2015 hearing human voiceNadav Kander for Reader's Digest

My guide dog, Matt, shuffles at my feet. We’re on a crowded train, and I’m trying to build a mental picture of the other riders.

I smell a strong, sweet perfume. My fellow passengers probably haven’t noticed it—they’ll be busy chatting on their cell phones or reading the paper. But to me, it’s a clue. Does the lovely scent belong to a girl on her way to meet her boyfriend? Or perhaps she has a first date? I can smell coffee too. I tell myself to be careful in case there’s a hot drink nearby.

This is my life as a deaf-blind woman: trapped in a world that is getting darker by the day, a silent world interrupted only by the blurry low-level white noise my hearing aids give me.

But in a month, I’ll have cochlear implants. The surgeons tell me that at the age of 39, I might be able to hear for the first time the voices of those I love: my family, my friends, and the colleagues I work alongside of as a mentoring coordinator. It’s an incredible prospect, but it comes with serious risks. If the auditory nerve is damaged, I’ll be stripped of even the fuzzy noise I’ve come to rely on, a sound that’s a bit like what you hear when you’re underwater.

I’m overwhelmed by fear. My mother is worried too. “You’re OK as you are, Joanne,” she says. “What if it goes wrong?”

But what if it doesn’t? What if there’s a chance that I’ll take out my hearing aids and never put them back in again?

I know that one day soon, I will lose what remains of my eyesight—I have retinitis pigmentosa, another symptom of Usher syndrome, the rare and cruel genetic condition that robbed me of my hearing at birth. Since I began going blind, in my late 20s, I have had no peripheral vision—just a narrow tunnel of sight in front of my face that lets me lip-read. But is there really a chance that the doctors are going to give me back my ears in exchange?

My eyelids feel as if someone has attached lead weights to them. Slowly, with a huge effort, I blink them open. A crack in the ceiling of the hospital ward comes into focus. Then a face appears in my tunnel vision. It’s Mom.

“Did they do the operation?” I croak. “Is it over?” Mom laughs.

Two days after the operation, I’m home in Gateshead, England. The specialists think it has gone well, but I have to wait a month before the implants can be switched on. Only then will we know whether it has been a success.

Suddenly, I have become helpless. I can’t wear my hearing aids anymore, and without them, the white noise that guided me through each day has disappeared. The total and utter silence is a depressing companion.

What scares me most is the thought of staying like this forever.

A month later, I’m back at the hospital. Mom and I are sitting in the waiting room. A large-screen TV posts each patient’s name and the waiting time.

Joanne Milne, ten minutes.

Six minutes: That nagging fear just won’t go away—what if the operation hasn’t worked?

Five minutes: I think of other things. The fear in Mom’s face as she rushed out of the house when I was hit by a car as a little girl because I couldn’t hear it coming. The time I wriggled out of my stroller while Mom was looking in a store window. The frantic two hours she spent searching for me in the crowds, knowing there was no point in calling my name. The fight she had to get me into the same mainstream school as my sisters. The bullies who spat on my back on the school bus, thinking it was hilarious that I couldn’t hear them.

Three minutes: I look up at the screen and swallow hard.

One minute: I’m looking down at the floor when I see a pair of black shoes appear beside me. I look up, see a friendly face appear in my tunnel, and feel the vibrations of Mom getting up next to me.

july aug 2015 hearing human voiceNadav Kander for Reader's DigestI take a seat opposite the audiologist, Louise, in her office. Before she switches on the implants, she needs to align 22 electrodes in each ear with a computer. It’s a drawn-out process as she attaches wires from my new hearing aids to her computer. When she puts them behind my ears for the first time, they feel cold and hard.

After the same laborious process is repeated over and over for each electrode, Louise puts down her pen and smiles at me.

“Caaaaan … yoooooou … heeeeear … meeeeeeeeee?”

The first words I’ve ever heard.

Every letter and syllable bounces off the walls, the ceiling, the doors, ringing out around the room, in my ears, and rattling round my brain as it desperately tries to filter every new sound that has pirouetted out of Louise’s mouth and hit my ears, exploding like a firework.

Is this what sound is like? This isn’t a white noise or a gentle hum. This is what it feels like not to be deaf. This is hearing.

“I’ll go through the days of the week,” Louise tells me slowly.

She sounds how I’ve imagined a robot might. Her voice is high, squeaky, and electronic: “Monday … Tuesday … Wednesday …”

The emotions come fizzing out of my body like a shaken can of soda. Tears spill into my lap as I try to take it all in.

“Thursday … Friday … Saturday … Sunday …”

Words I’ve known my entire life but ones I’m hearing for the first time. So ordinary, and yet to me they are the most beautiful words imaginable.

Mom is standing to my right, filming this moment. I try to speak, and I have this strange sensation from within. A voice in my head. My own voice.

“It sounds very high,” I say.

“It will sound high-pitched at first,” says Louise. “Your brain will readjust it, so it won’t always sound that way.”

I put my head into my lap and sob.

“Smile,” says Mom, as she stands with the video camera. She has been my mouthpiece, my ears, my eyes, my entire life, and I’ve never even heard how she sounds until now. My brain tries to compute the difference between her and Louise and instantly spots it: Mom’s Northern English accent. So that’s how we sound.

The operation has worked. I can hear. If you could bottle joy at its happiest, that’s how I’m feeling. In all those years in my silent world, words were lost on me, strangers that I could only hope to befriend. And yes, there’s an obvious question: How do I know what these spoken words mean, never having heard them before? All those years of lip-reading had taught my brain the shape and feel of spoken words even before I’d heard them. And now, suddenly, sound and meaning are coming together.

I leave Louise’s office a hearing woman. As we walk away, I hear the tap of footsteps on the floor. Then there’s another sound.

“What’s that noise?” I ask Mom.

“It’s a phone ringing,” she says, and as I look up, my tunnel vision reveals the receptionist picking up the receiver.

“What’s that noise?” I ask again, as a clink clink sound passes by.

“It’s a lunch trolley.”

The tiny little signs that everyone takes for granted are coloring my world, bringing it to life like I’ve never experienced before.

As we leave the hospital and step out into the March day, the wind whips around the ground, picking up leaves and swirling them round and round. And I realize then that the wind makes a noise, a rushing whoosh of a noise.

We stop at a restaurant, and I’m astonished by just how noisy the world is: the clattering of the kitchen, knives and forks tapping on plates, the hum of conversations across the room. And then I notice something else: the sound of my own cutlery scraping against my plate.

“I’m a very noisy eater,” I laugh to Mom.

Everything is wondrous to me: the fact that I answer the waitress when she asks if I want Parmesan for my pasta, even though I’m looking away; the noise my glass makes when I put it down too hard on the table; the ice that clanks around between the lemon slices in my drink.

I thought drinks were silent. I thought glasses didn’t make a noise. I thought you could communicate with people only when you were looking at them. These are all secrets that the hearing world is now letting me in on.

By the time we get back to our hotel room, my brain is exhausted from the effort of hearing. As Mom hangs her coat up in the wardrobe, I ask her for the first time in my life to be quiet.?“Oooh, sorry!” she says. And we collapse into fits of giggles.

BREAKING THE SILENCE: MY STORY AS I LEARNED TO HEAR FOR THE FIRST TIME, BY JO MILNE AND ANNA WHARTON, COPYRIGHT © 2015 BY JO MILNE, IS PUBLISHED BY CORONET BOOKS, CORONETBOOKS.COM.
Originally Published in Reader's Digest

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