BY JOANNA C. VALENTE
It was a Thursday afternoon and I was walking in late spring, almost early summer, down Lexington Avenue past Grand Central, past the taxis, the cyclists and listening to Cocteau Twins’ “Heaven Or Las Vegas,” feeling frustrated because I couldn’t really hear it. Instead of towering, Art Deco-esque Mordor-like buildings that could also work as the home to Satan, I imagined ivy and cherry blossoms and sailboats in the long horizon like an eternal line lit up by the sun and the moon and the stars. I wanted to be somewhere else, where I could hear, where I could walk without feeling tired, lethargic, unbalanced, a searing hot knife digging into my skull like a gardening tool.
A few months earlier, I had ruptured my ear drum on a flight back to New York City from Tampa, where I attended a writer conference. Around 2 AM, my ear began bleeding, after hours of unbearable ear and head pain, I took a cab to NYU. That turned into a middle ear infection that refused to end, that medication refused to respond to, that I had a tube inserted into my left ear for Eustachian Ear Disorder.
I would go from doctor to doctor to doctor like I was eternally dating men who didn’t want to listen to me or take me seriously. Part of me felt like I was making it up in head until—the intense and constant knife being shoved into my head, the muffled hearing, the never-ending tinnitus (that I still have), the never-ending sound of my own heartbeat inside my head, the high fevers, the lethargy, the constant yellow pus coming out of my head, the never-ending story—until I went to a female doctor who put down her otoscope and exclaimed how she was nervous I was going to get meningitis.
“You really can’t hear me, can you? You must be lip reading most of the time. You’ve gotten good at it, I can tell,” another doctor said in urgent care. I had never felt so seen, so understood, in that moment. So many people brushed it off or didn’t understand how challenging it was, just how bad it was. Even doctors. For once, I felt seen, validated. I was scared but I finally felt like someone was taking me seriously.
New York City is a strange place to be hard of hearing. It’s a challenge anywhere, but in a city that is so loud and fast, no one has time to deal with you. It also becomes a strangely more silent place. In some ways, I liked it more. In others, I felt lost. I knew I was missing out on so much. I mostly hated it when I would go up and down the subway stairs, feeling imbalanced (because I literally was imbalanced, my body’s balance system was all out of whack).
I had also recently separated from my ex-husband. The metaphor for isolation couldn’t have been more apt. I had been left for another woman. The betrayal felt worse, because I was also now “damaged” property.
“Are you going to order or what?” the barista asked, annoyed. She must have asked before and I didn’t hear her.
It wasn’t until I was listening to Madonna’s “Like a Prayer” that I realized I was hearing sounds wrong. They were coming back. Finally. I was so thrilled, after months, of not hearing most things, of being stuck inside my head literally, that I didn’t realize I couldn’t hear certain tones and pitches.
I saw the Avengers movie with C and everything was muffled. By the end of the movie, I was shaking, chills up and down my spine vibrating my body like an earthquake but I looked fine. C drove me home, mentioning that I just felt “awfully tired.” When I finally made it up the stairs into my apartment, my temperature had risen to about 104 degrees.
My first instinct was to call my ex-husband whom I had separated from, asking him to take me to urgent care—only to be told to call my sister because he was going on a date. I hate having to ask for help, from anyone (but especially him) in the first place. I wanted this to bond us together. If anything, I just became more of an unwanted nuisance—a nuisance he didn’t even know how to talk to. Or so, that’s how I felt.
My sister took me without question. Where would I be without her? I found myself wondering.
Before I became sick, I never thought about hearing.
Like many, I just didn’t see it. I didn’t want to see it. I didn’t think about how frustrating it is to navigate a world when it’s built on being “able-bodied” when it shouldn’t be built for only one type of body or person. I didn’t think about how we should all learn American Sign Language.
I honestly just didn’t think. Too many people don’t—and it’s something we need to take accountability for, for everyone’s benefit, for everyone’s right to be happy. Taking accountability isn’t easy, it wasn’t for me, but understanding my own complicitness is important to growing and evolving as an individual, but also as someone (all of us) who has the power to make someone else’s life better. If we don’t harness the power we have, however large or small, what are we doing then?
While I was dealing with temporary healing loss, I didn’t know how to ask for help. I realized this when a friend ordered Seamless for us one night and literally said as I sat at their kitchen table, taking my medication, “Just let me take care of you. You’re so sick.”
Finding myself with a health issue, suddenly and without warning, is not only scary but it really made me confront just how ablest and awful our society is, how I’ve been complicit to forms of communication and interaction. And how we, as individuals, fail each other and ourselves. We don’t prioritize making the world more accessible—because we should, because everyone deserves to exist without unnecessary challenges we construct.
We all experience life differently. For me, this was a temporary illness, which is far different than a chronic illness; my illness didn’t become a permanent disability for me. In this way, my temporary experience taught me a great deal about myself, about others, about how to better see and listen.
Are we not hummingbirds sometimes, flying backwards, too fast to really see the people around us, to see nuance?
This, however, can change. We can pause, to see others better, more clearly. We can live fuller lives together.
Sometimes I forget what it was like. Our minds play tricks, and fog out the pain with smoke like it never existed. Stars die out in the universe, their deaths unfelt by us—and that’s how memory fades. I forget my own pain so I can feel, so I can move forward in time. But sometimes, I remember the loneliness—and that loneliness makes my heart constrict like I breathed in icicles.
I remember secluding myself from people because I was too tired lip reading. I was tired of nodding and pretending.
At a former job, colleagues would talk to me from across the room. I didn’t know how to ask for what I needed or deserved. I usually found myself straining, sitting quiet.
Why do we question what we deserve? Why we do we question being silenced or made to silence ourselves?
I mostly remember just pretending.
I don’t pretend to be okay when I’m not anymore. I don’t play pretend like it’s a virtue.
When I wake up, I usually hear the trucks and cars below me on Greenpoint Ave. There aren’t many bird sounds—mostly just cars and people. I’ve learned to savor every sound I hear, even the ones that wake me up at night.
I didn’t realize how much I needed to love myself, regardless of what was happening to me in my life—be it illness or divorce or heartbreak or a new job or new apartment. It’s hard to love yourself when you’ve been told you’re wrong—whether it’s as a queer person, as someone with an illness, as someone whose body makes them uncomfortable, as someone who wasn’t taught that you are enough.
You are enough the way you are. You are enough. And you deserve to be loved and to love yourself. You don’t have to fit into any idea or box to accept the love you deserve from yourself—and demand it from the world.
Joanna C. Valente is a human who lives in Brooklyn, New York. They are the author of Sirs & Madams, The Gods Are Dead, Marys of the Sea, Sexting Ghosts, Xenos, No(body) , and is the editor of A Shadow Map: Writing by Survivors of Sexual Assault. They received their MFA in writing at Sarah Lawrence College. Joanna is the founder of Yes Poetry and the senior managing editor for Luna Luna Magazine. Some of their writing has appeared in The Rumpus, Them, Brooklyn Magazine, BUST, and elsewhere. Joanna also leads workshops at Brooklyn Poets. joannavalente.com / Twitter: @joannasaid / IG: joannacvalente / FB: joannacvalente