My Ridiculous, Romantic, Painful Adventures in Deafness

By
Image
Photo: Getty Images

My girlfriend and I are draped across each other in bed. She brushes a stray hair from my face and moves closer. Her voice is like gravity — deep, growly, irresistible — and my synapses come alive when she puts her mouth to my ear.

“You have a seductive face,” she says.

I crane my head slightly back to look at her mouth, and say, “I have a duck face?”

-

I was nine the first time I realized I was half-deaf. My brother and his friend were talking about something — I’ve no idea what anymore. All I know is I heard it wrong and they mocked me tirelessly for it. It took another decade before I was officially diagnosed as hard of hearing — to put it in a sexier way, “moderate binaural sensorineural hearing loss” — and told I needed hearing aids.

Practically speaking, this means, even with hearing aids, I often have no idea what’s going on. I can usually tell that someone is talking to me, but I don’t know what they’re saying. I catch words but not sentences. I read lips but don’t know sign language. I’m worthless in bars, group settings, any instance where someone is not looking directly at me in a quiet room. Ordering a pizza over the phone has led to anxiety attacks. My “dirty” talk consists of “What?”, “Huh?”, and “Hmm!” I repeat things that have already been said. I make guesses at conversations that are met with blank stares or outright laughter. I nod recklessly and make bold assumptions. I’m wrong more than I’m right. Because of these misunderstandings, I’ve been yelled at, spit on, and one time slapped across the face and thrown against a car door, by a man who thought we were role-playing. Were we? I don’t know. I wish I did. Did I say yes to this? Did my eyes say yes? How can the worst moments of your life be ones in which you don’t even know the story?

The cause of my hearing loss is genetic. Nothing I can do about it. I have a duck face.

As a child, these losses devastated me, though as an adult, I am much better at finding certain misunderstandings funny, and even have a name for them, as if my life were a zany sitcom: Adventures in Deafness, I call it. A sample episode: A friend walks up to me at a party and introduces me to her partner.

“You remember Mark, my fiancé?” she asks.

“Beyoncé?”

-

In high school, people assumed I was shy or stuck up (or shy and stuck up) because I couldn’t hear group conversations and, hence, often said nothing. My teachers encouraged me to talk more in class. They didn’t know I couldn’t hear. And I didn’t tell them. I couldn’t. I couldn’t even tell myself I needed help. It was better not to try. I would rather be shy or stuck up than humiliated.

Silence is golden, the cliché goes, a respite from the unending cacophony of the world. For me, though, silence is loneliness, the impossible search for something just beyond my grasp: understanding, connection, company.

Hearing loss affects more than 278 million people around the world. In the United States, 20 percent of us suffer from some degree of hearing loss, which often goes untreated because it is deeply stigmatized, and written off as an unavoidable by-product of aging. “I can’t get hearing aids,” a friend’s mother once told me. “I’m not ready to be old.”

I wasn’t ready either. Hearing loss is a loss of the most profound order. But when I was 19, my desperation outweighed my fear of being stigmatized, and I broke down and got a hearing aid. Hearing aid, singular: I could not afford two. A set costs between $3,000 and $7,000, and they’re rarely covered by insurance. My first aid was the size of a raisin because I didn’t want anyone to ever know it was there.

I wore it for a few weeks, just long enough to feel crushed by my inadequacy and the weight of the world’s indifference. Noises became amplified, but no clearer. My own voice boomed as if James Earl Jones had suddenly taken up residence inside my skull. Eating a tortilla chip was akin to the opening scene from Saving Private Ryan.

When I was 22, I tried hearing aids again. I was a high-school teacher and volunteer coordinator with AmeriCorps, and desperately needed something to make my job easier. I was still broke, so I wrote to a nonprofit called Hear Now. They approved me for one hearing aid. Again the world boomed alive in my ear, and again it made zero sense. The voices of those around me remained soft and jumbly. It was as if I was being forced to watch a foreign film of my life without subtitles. I wore it for a few weeks, and then it went into a drawer.

A special-ed student came up to me one day at the after-school writing center, which I ran with a co-worker. She whispered to us that she was pregnant and that her older boyfriend was threatening her because he thought the baby wasn’t his. I didn’t console her. I didn’t offer her advice or counseling or help because I couldn’t hear what she was saying. I felt the grief of her muted words in my chest. I felt her hushed panic, but I did not understand it. I tried to offer her sympathy by matching her alarmed facial expressions, which was all I could do. My co-worker later told me what had happened, and for the thousandth time I was struck dumb by my own uselessness.

Adventures in Deafness, part 108: Springtime, and I am walking alone in my neighborhood one morning. Behind me I hear a catcall whistle. Incensed, I turn around, ready to give an earful to the rude man disturbing my morning walk, and realize the noise I heard was a bird. It was not objectifying me — it was singing.

-

When I was 24, I got a “real” job, with benefits and a retirement fund. My hearing had prevented me from being a teacher, but I thought I could handle an office environment. I still struggled every day, but most of my tasks could be completed online. With the money I was making, I could finally afford a second hearing aid, so I bought one. Much like every other time I had tried wearing them, the world remained elusive, incomprehensible.

What I didn’t realize when I took out the latest in my string of rejected aids — what no audiologist or ear, nose, and throat doctor had told me in the 14 years I had been trying and not trying to wear them — is that hearing aids take time to work. I had to learn about it from a book, Living Better with Hearing Loss by Katherine Bouton.

It was there I learned that hearing aids aren’t like eyeglasses. You don’t put them on and suddenly every sound sharpens and settles into perfect clarity. It takes months, sometimes years, before your brain can relearn how to interpret the terrifying input of this brave new world. And even then, results are not great. Yet the return policy on most hearing aids is 30 days.

Adventures in Deafness, part 37: My girlfriend says, “Fleetwood Mac is coming to town.”

“Fragrant man?” I reply.

“No …”

“Farting man?”

-

I’m 33 now. I once again have hearing aids. I bought a pair from Costco, where they were a fraction of the normal price ($1,800), and I didn’t even have to buy them in bulk to get the discount. (I did buy a forklift’s worth of toilet paper while there, naturally.)

The diagnosis from the Costco audiologist was grim. He expected it to take two years for me to see results. And even then, he said, “You’ll never be within the normal range of hearing.”

Then why am I doing this? I asked.

“It’s better than nothing,” he said.

A chicken can regenerate its inner-ear sensory hair cells. So can a zebrafish. But not me. Not any human. The best I can hope for is “better than nothing.”

Adventures in Deafness, part 17: A friend and I are sitting in his apartment, drinking whiskey neat. Out of the blue, he puts forth the morbid question of whether I’ve ever wanted to die. But the question I hear is, “Do you want to date?” Panicked, I start rambling off reasons why I am undateable.

“Oh! Well, you know I’m pretty gay, right? I realize that might seem confusing because we slept together recently, but well, when in Rome — haha, oh, do I want to die?” Why yes, as a matter of fact. Right now would be fantastic.

-

“You’re a writer?” a different audiologist remarked as we were making small talk. “What a great way to never have to talk to anyone!”

And it is. Except when I’m conducting an interview or giving a reading or trying to follow a phone call.

I had the opportunity to interview one of my childhood heroes, Jewel, for a magazine assignment. For our phone call I used a captioning service, which is supposed to translate speech to text, like closed captioning but for phones. The transcript from that conversation starts out, “Hi this is Joe calling,” and soon becomes completely indecipherable. Here’s a snippet in which we were talking about her favorite books:

“a book I read a lot about (speaker unclear) shifts in my thinking sort of paradigm shifts that help me deal [be] less of a (speaker unclear) helps me be an architect of my life instead of just acting to like [through life] I go to a lot of detail about how I really what you perceive them how you respond um that is what builds your life um it starts in the mind and your mind builds actions in actions build a life so it is not aware of what you are thinking”

-

The worst job I ever had was, somewhat ironically, at Costco. I was 18, slinging hot dogs and churros in the pizza kitchen. It was the holiday season and I cried every day. One day I misheard my manager, and she screamed at me for cleaning the wrong shelf and clapped loudly near my face. “Are you stupid? What do you think you’re doing?” I found a different manager and tried to explain my predicament. He let me wash dishes for the rest of that shift, but the next day I was back at the window, trying like hell to get the orders right amid the clang and warehouse echo and crying children and Christmas music.

Adventures in Deafness, part 41: My brother visits me from New York. As he goes out for a cigarette, he says, “I’ll be outside.”

“Beyoncé?”

-

Once, a man followed me home from a bar because he thought I’d agreed to have sex with him. I must have nodded at the wrong time. I took a taxi home and still he showed up at my door. It took me half an hour to convince him to leave. He put my hand on his cock and it was the first time all night we understood each other.

Are you stupid? What do you think you’re doing?

The world is a trying place. I want to be around people, but it’s difficult to convince them to come to my house and sit in a well-lit, silent room with just me. My friends are sympathetic and they try. But there’s only so much they can do. Most days I vacillate between acceptance and a barely perceptible desperation. Other days, I want to disappear. My hearing loss is never going away (indeed, it will only get worse as I get older). Living with that knowledge is crushing, but it’s helpful to remind myself that I’ve never let my disability stop me from living my life. It hasn’t stopped me from doing things like getting my pilot’s license, traveling to far-flung countries, or embarrassing myself in front of famous people on the phone. (“Hi Joe!”) If anything, my disability has forced me to get creative about my problems. There’s texting and video calling. There’s going for walks instead of going to bars. We can order pizza on the Internet now! Most heartening of all is the fact that most people want to help. Most people are happy to face you when speaking or repeat themselves or text you even when you’re standing right next to them because you decided to go to a Led Zeppelin cover band concert, like an idiot.

Adventures in Deafness, part four: I turn to my girlfriend in bed, where we are both clacking away on our laptops. “Did you say something?” I ask.

“That’s a dog barking,” she says.

We laugh for 20 minutes straight. It’s better than nothing.