I lived with my disability for five years before I found it existed.
The comments started in high school. When I was in class and a friend would have to relay the teacher’s words back to me, when I tried to talk on the phone and couldn’t make out the other person’s words, when the fire alarm went off at school and I couldn’t hear the high-pitched buzzing: “Mary, you’re deaf.”
Technically, I’m not deaf. My hearing loss is moderate, though growing more severe every day. It’s sensorineural, and doctors give me blank looks when I ask what might be the cause.
“Do your parents have hearing loss?” they respond, answering my question with another. My father does, but because of a faulty bone hidden deep within his ear. He had surgery to fix it, but still he will ask you to repeat yourself, once or twice or even three times.
This stumps doctors even further. Conductive hearing loss, the kind he has, is not at all related to sensorineural hearing loss; it involves bone structure or an ear wax build-up, while sensorineural loss occurs because the nerves that travel from the ear to the brain no longer work as they should.
When I was eight, my father had surgery to correct his hearing loss. My mother made him a bed on the couch, where he lay with his “bad ear” up, loopy from the pain meds meant to dull his senses. Two of his siblings had the surgery as well, but still they each turn their “good ear” towards any conversation, have to listen hard to hear sounds over the chatter of background noise. I asked him then if I’d ever need the same surgery, but he promised my ears were perfect.
People often chose to think that the worst-case scenario could never be true. My family avoided the possibility of my hearing loss for years, likely because I was so young, and the chances of developing hearing loss at that age was slim.
I was abroad in Ireland the fall of 2016, living by myself in an apartment in downtown Dublin, a few minutes’ walk from Trinity College, where I was studying. I spent much of my time alone when I wasn’t traveling, or when family and friends were not visiting, and I think my hearing was dulled during that time, from lack of conversation that might have prompted me to remain alert, in spite of my loss.
My mother came to visit me in November for a week, and I showed her around the city I had come to call my own. We were walking down the busy, crowded Grafton Street one afternoon, and I was ahead of her. I was content in my silence, taking in all that the road had to offer, when I felt her hand on my arm.
I turned back, looked her in the eye. “What?”
“I’ve been calling your name for two minutes.
“I must have been spaced out. What did you want to say?”
“I was right next to you. You really couldn’t hear me?”
I shook my head, uncertain as to how to respond. I had no explanation, I didn’t know exactly why I didn’t hear her when she called, when she repeated herself over and over.
After she left, in a moment of weakness, I looked to WebMD for answers. I found a quiz that was meant to check whether you had hearing loss, and if so, the severity of it. The quiz asked a few generic questions: if I had trouble hearing over background noise, if I often asked for others to repeat themselves, if I experienced any tinnitus, ringing in my ears. After checking yes to all of the questions, I realized I likely did have hearing loss, and at quite a severe level.
I found a website advertising hearing aids, geared towards the elderly. I did a double take at the price tag of the devices, upwards of $5,000 dollars. Health insurance would only cover the cost for students under the age of eighteen. College students were not eligible. I bookmarked the site, but knew it would be a stretch for me to afford this technology. I figured, I had survived just fine up until that point. I was successful in my college career, I had friends, I was a skilled lip-reader. Maybe I had a little hearing trouble, but everything was going fine. I had learned to cope.
Two months later, once I had returned to the States, I sat in my audiologist’s office for the first time and realized that my disability was more significant than I thought.
“I don’t understand,” she said, as she handed me a piece of paper that mapped out the range of my hearing. “I don’t know how you can function in a college environment with your level of hearing loss.” She did not try to hide her tears.
I looked back at the doctor and thought I should probably cry too. Instead, I watched as she wiped at her face and reached in for a hug, likely more for her own benefit than mine. And one week later, as I tested out different versions of the Oticon hearing aids, I watched my mother cry while I listened to all the new sounds that the world around me had to offer. The hum of a generator outside, a conversation down the hall, my knuckles crack loud in my lap.
“Is this how loud my knuckles always sound?” I asked my mom. She nodded and tears rolled down her cheeks.
“I should probably stop then.” She laughed, but I was serious. I’d probably been annoying everyone around me for years, cracking all twenty knuckles on my fingers in a calculated order just because I couldn’t hear them.
When I first met with the audiologist, she recommended I get an MRI. She thought there might be a mass pressed against the nerves, cutting off my hearing, and it was standard protocol to refer patients with hearing loss to a neurologist. Although, there was probably no tumor, they tried to reassure me, but better safe than sorry. This was in January, and I had just returned from my semester in Ireland.
I tried my best to confront my first real hearing-loss diagnosis, not just the suggestions of some online quiz, but it was the week after New Year’s and my brother was getting married. Every room in my parents’ house was full with wedding guests, so my sister was ordered to share my bed and my nieces were relegated to the basement couch.
The day of the MRI, I felt uneasy, and even more unfamiliar with my own body. I pictured this tumor buried deep in my head, slowly cutting off all the activity in my brain, as the machine beeped and whirred with me inside. Would the tumor knock me unconscious one day soon, leaving my family to pick up the pieces?
A family party raged as I walked through the front door, and my head was still spinning. I hadn’t told them what was going on, as I didn’t want to distract anyone from the wedding festivities. I now know that I don’t have a brain tumor. But that day, I wasn’t yet sure. I smiled and accepted a glass of wine, or maybe an eggnog, and pretended like it was impossible that I might have a brain tumor.
The number on the digital clock shifts up a notch. 8:36pm. The professor paces the front of the classroom, gesticulating wildly about Rousseau or Voltaire, the peculiarities of this forgotten language. I try to focus on the page in the book in front of me, but my gaze inadvertently shifts back to the clock on the wall.
Somehow people are always a little bit too far out of my reach, or maybe I am just unapproachable in my aloofness.
Her voice disappears as my eyes leave her face. I begin to imagine my commute home to the now-darkened Mission Beach, wonder who will be sitting in my living room, if I have any food for dinner. Hearing aids amplify the world around me and this makes things easier, but they’re not perfect. Having relied primarily on lip reading my whole life, my brain struggles to make out words and sounds, even when I can hear the noise.
“Don’t forget…it …Thursday”. The class has already started to get up, chairs screech and cut against the glistening white tile.
Shit. I shove stray folders and pencils into my backpack. Students file out, my friends have all left and I have no one to ask for clarification. My heart begins to beat faster, palms thicken with sticky sweat.
I approach the front of the room, where the professor erases the heavily-lined chalkboard.
Ask for help.
She sighs and throws me a look of exhaustion, one that I likely mirror, alongside the scent of desperation.
“I said, the first quiz is on Thursday. Unit 1 of the reading.”
I scrawl this in my faded white planner. My mother bought it for me from Anthropologie last summer, as we were scouring the store during a “Back-to-School” shopping trip.
“You really have to pay better attention, Mary,” she says. She narrows her eyes and looks at me like I owe her something. “I understand this is a night class, we are all tired, but that doesn’t give you an excuse to slack off.”
I bite at my cheek and think of what to say next, if this jab even merits a response. It is only the second week of school. I haven’t yet found time to go to her office hours, to speak privately.
The fluorescent lights flash yellow overhead, and I think about how I have known about my disability for almost six months, but I still can’t figure out how to explain it to others.
I have spent a lot of time trying to convince myself that I am normal. My disability shouldn’t hold me back, but at times I am forced to confront the fact that it does set me apart. It makes me different, but does this have to connote something negative?
In Ireland, one girl told our mutual friend that she thought I was a little slow. My responses to the episode of Gilmore Girls were too delayed, she explained. I didn’t tell her that I couldn’t follow the show because she turned off the subtitles when the episode began, but her words swirled around my head for months.
Does everyone think this of me? I wondered, but when I told my mom about this girl, she swore it wasn’t true. The girl was out of line for saying it in the first place, my mom insisted. I agreed with her, but my mother can’t change the fact that my hearing loss impacts the way I am perceived by those around me.
When I first confronted my identity as a disabled person, I felt like a fraud. My hearing loss wasn’t really a disability, I’d survived this long without any of the official paperwork.
“You know, this could be good for you,” my mother said. “Now when you apply for jobs or to grad school, you have one more box checked off. They need to fill their quotas, that’s what you are.”
I nodded but was left wondering if that’s all I was now: another girl who got special treatment because she couldn’t hear all that well.
I call Annie, my younger sister, after a bad day. I can usually tell as soon as I wake up what my level of hearing will be like that day, and it varies depending on my level of sleep, stress, allergies, or the remaining alcohol that may or may not linger from the night before.
This day had been filled with people talking at me, throwing questions and comments my way, repeating them four or five times, but still words flowing together like sand pouring through an hourglass. A day spent reading lips, picking up broken words and assembling them like puzzle pieces, where every word directed at me comes in the form of a challenge. I told a friend about my disability for the first time that day and could not cope with the sheer anxiety or the expectations that followed. Annie tells me I have to relax, says she broke down and sobbed when she first found out.
My friends have learned how to interact with me; they’ve been patient and supportive and willing to listen, but with Annie, my disability has never been something I need to teach. She was there in high school when the first traces emerged, she watched as I began to ask for words repeated, observed as I entered into every conversation one step behind. I enjoy interactions with others more when I am with her because she always has one eye on my conversation, ready to step in as a distraction or to discretely repeat what she knows I just missed, if she can tell I am too lost to continue.
She often reminds me that everyone will react differently to my disability. She knows me best, yet the news still came as a shock to her. The reactions that I am hypersensitive to are just another ordinary conversation for others. To compensate for instinctively expecting too much of people, instead I try to expect nothing.
She knows how to speak about my hearing loss in a way that I can’t. I’ve slowly learned how to explain my disability, but this often feels like the hardest part. I can navigate the hearing aids, the Oticon technology that allows me to livestream the television feed, the pen that doubles as a speaker that I can clip on my collar. But I have found that the hardest part lies in the everyday. It’s deciding whether to explain to someone who has just called my name three times that I’m not ignoring them, I just can’t hear. It’s forcing myself to laugh when the entire room is watching, waiting for me to respond to a question that I can’t understand. It’s asking someone to repeat themselves for the third, fourth, fifth time, before haphazardly nodding in agreement because I realize I just won’t get it, no matter how many times they say it.
The bright lights of the classroom fade from view as the school week ends, and then it is Friday night and I am in a dimly lit bar in Pacific Beach, ready to welcome in the weekend. People swarm the dance floor and I can’t move, and the noise around me is a steady roar of sound. My friend and I stand next to a speaker pumping ‘90s alternative music, and my hearing aids shriek. The speaker’s static sounds always cause my hearing aids to act up, and the harsh feedback feels like a knife grating against my skin. I reach to my ear and my friend looks up, confused at the noises coming from my ponytail.
I giggle and pull out my hearing aid to show her. She tells me how her grandparents use the same brand, that mine squeak less. I learned to joke about my disability when I was in high school, before I understood the extent of my hearing loss. Jokes provide a means of handling the problems that arise when I sometimes miss half of the conversation occurring right in front of me, or when it feels like it might be impossible for me to be a normal twenty-one year old.
Embracing a disability is a constant struggle, and a journey that I have only just begun. I try my hardest to remember this when a simple conversation feels like an attack, when one off-handed comment leaves me immobilized, body stricken with fear.
Because of my hearing loss, I have come to realize that above all else, people are looking for a way to connect with one another. My disability can stand in the way of this organic process, and people become defensive when they feel that I am acting removed. It makes me defensive as well, leads to miscommunication. But the next time that joke feels like an attack, or one off-handed comment leaves me faced with the realization that some might perceive me to be uninvolved or unmotivated, I hope that I will be able to rise above the challenges of my disability. In the process of learning to cope, I am further than I ever have been, and still only at the beginning stages of my journey. Maybe one day, somewhere along the way, I can begin to help others experiencing a similar struggle, so that our daily realities become a little bit less overwhelming, and a little bit more of a means for bringing people together.
Mary Berset, originally from Vienna, Virginia, graduated from the University of San Diego in May. She majored in English, with an emphasis in Creative Writing, and minored in Political Science. Mary lives in the Washington D.C. area and currently works as a Literary Events Intern at the PEN/ Faulkner Foundation. She hopes to attend graduate school to earn an MFA in Fiction Writing in the near future.