Listening to Love

I realized I was unique when I was 4. Everyone else in pre-school had two ears, while I had a left ear and a tiny bump on the right side. I didn’t understand why my mom carefully brushed my long hair to hide the little bump.

My family moved to New York from Bangladesh when I was 7. Not long after that, we visited with relatives of my mom’s at my grandparents’ house in Brooklyn. As I rested my head on my mother’s shoulder, an older aunt asked her, “What’s wrong with [his] ear? Was it something [he] was born with? That’s horrible!”

“What does it look like? Can I see?” asked my younger aunt. She then grabbed my head and pulled it toward her to stare. My mom didn’t say anything to defend me and seemed sad on the drive home. I began to feel self-conscious.

Although my right ear has severe hearing loss, my left ear functions normally. In 3rd grade I received an individualized education plan (IEP). IEPs provide accommodations for students with special needs or disabilities to make learning accessible.

With the IEP came my hearing aid, my first. It was an earpiece in my left ear connected to a microphone that the teacher spoke into. 

It was akin to having a person speak next to me. I had never thought of myself as needing such help, but now I didn’t have to stay on one side of the room to hear clearly. I stopped frantically looking around at other students’ reactions when I couldn’t comprehend the teacher’s words. I wished I could always hear like this.

Cursed?

When I was 9, my mom became pregnant with my little brother. I asked her about childbirth: “Amu, is it going to be scary or hurt a lot?”

“It couldn’t be any worse than having you,” she said with a chuckle. “When I first saw your ear was missing, I couldn’t bear to look at you. I was devastated.” 

As if noticing my hurt, she quickly said, “It was my fault. Your grandmother had warned me that if I butcher meat during the full moon something horrible can happen to your child. I should’ve listened.”

I tried to make sense of her words. I would’ve liked to be able to hear normally. But I didn’t understand why the visual of my deformed ear was so painful to my mother. Why did she focus on that so much and not on the rest of me? 

For the nine months of her pregnancy, my mother avoided cutting meat. One day I was standing by the doorway of the bedroom and saw my mom performing salah, or prayer. I heard her whisper,

“Oh Allah…may you let my unborn son prosper….do not curse him by removing his ear…”

She was desperate to not have another child like me. I asked Allah why I couldn’t have been the normal child my mother craved. I could’ve been angry at my mother for not accepting who I am, but instead I absorbed her shame.

The Choice

When I was 11, my mom and I met with a doctor about surgery on my ear. The doctor explained, “You have two options. One is to put a magnet under your skin and have a hearing aid sit on your head. The second is that we can make an ear canal and then build a new ear using skin from your rib cage area. It is possible with the latter option, though, that the ear canal will close up later.”

I looked at my stomach and imagined them stripping a piece of skin off. 

“Are we doing the first one?” It seemed obvious.

“We’ll be doing the second one,” my mom said. 

“But Amu! I don’t want to do that!”

“It’ll be fine,” she assured me.

“The first one helps me hear too, right?” I asked the doctor.

He shifted around in his seat, “Uh yes, it does, more effectively, in fact,” he stammered.

“See, Amu? We should do the first one!”

“Do you know how that will look?”

I faltered at her determination to change only the way I looked.

Aftermath

When I woke up in the hospital bed, pain pierced my abdomen. I looked down to my stomach where a red line of stitches crossed from my waist to my chest. 

I laid flat in bed for the two weeks of recovery. The surgery was mainly for aesthetics—opening an ear canal barely improved my hearing. My mom was disappointed because though my ear looked more like a normal ear, it was distorted and smaller than the left ear. 

And as the doctor had warned, by the time I was 13 the hole had closed up entirely, leaving a smooth surface once again. I still can’t hear on my right side. 

When my ear canal closed, my mother booked a doctor’s appointment.

“Is it possible for us to do the surgery again?” she asked.

The doctor sighed, pressing his hand against his temple, and told her it was too risky to repeat.

We didn’t talk on the way home from the doctor’s, and my mom never brought up my ear again. 

I wanted to be normal for her. I excelled in school, became a math tutor, and was admitted to a prestigious high school. But she never praised my achievements, and I began to look to my friends for understanding.

I felt too complicated, too indigestible. Orion accepted me fully.

In high school, my new guidance counselor told me I’d have a support person to help me and four other kids with hearing loss. Knowing there were five of us in the school made me feel less alone as a disabled person. But truly accepting my disability as a part of my identity came from my conversations with my best friend Orion.  

Orion

Orion and I had met when I was in 6th grade. When the world locked down for Covid, I had more time for the video games I loved but nobody to talk about them with. I joined Discord servers and made friends online. 

Orion owned one of those servers, though he’s only a year older than me. I initially asked him for help with games and played with him. That gradually shifted to us talking to each other outside of games, and soon we chatted daily outside of that. 

In 9th grade, I felt too complicated, too indigestible. Orion accepted me fully. He felt like home is supposed to feel, like unconditional love. We still chat online for hours every day. 

Orion has autism and knew of my hearing disability, but we had not talked much about that. In fall of 10th grade, I messaged Ori about getting extra time for an exam. He wrote 

Oh yeah, it’s one of your
accommodations right?

Yup, I don’t really understand why. It’s not like
me sucking at hearing effects how
I take a test right?

It took him a long time for him to respond.

Disabilities affect a lot of things you might not think of.
Not allowing yourself to have accommodations makes it
conditional what opportunities disabled people have.

I get extra time to complete classwork as an accommodation
for autism and I use it even when I don’t necessarily
need it. Is that unfair? 

     No of course it isn’t!

Exactly. Your accommodations make sense in context
for sure. I read an article about hearing being connected
to language acquisition. 

                Wouldn’t that mean that hypothetically a deaf
                    person would process text slower?

YEAH EXACTLY! Which is probably why you have
more time on tests…Outside of not being able to hear well,
are there other ways being deaf affects you? 

Me for example, I lack the emotional empathy to put myself
in other’s shoes due in part to autism. So my cognitive
empathy is way better in response because I had to observe
people to fit in and now I can manually express myself
and view others in a way that is unique to me. 

    …To be honest I don’t really know how it’s affected me. 

        Maybe I had to be more attentive and grew to
be a better listener.

You being like that is in part due to your deafness.
You are the person I love so much because of it. I would
not want you to be any other way.

Do you mean that, Ori?

Yes. I love you.

“Are you alright?” 

I looked up from my phone to a woman sitting across from my seat on the subway. Her eyes, furrowed in concern, alerted me that I was crying. I smiled. 

Confirmation, Confrontation

That evening, I opened up the pdf of my IEP that my teacher had sent me a few months ago. Within the document was an audiogram, a graph displaying your hearing levels. I googled “How to read an audiogram” and confirmed that I have severe hearing loss in my right ear and normal hearing in my left. 

I thought back to the surgery when I was 11. I typed, “Magnet hearing aid implant.”

I read about how these implants work by bypassing the outer and middle ear and sending sound directly to the inner ear. It was seemingly perfect for me, a person with no inner ear issues. It really had been the better option. 

It took me a few months to confront my mother. 

We were sitting on our porch. “Amu, don’t you think it would be a good idea to do a surgery for my ear? A different one?”

She frowned. “What do you mean?”

“The magnetic hearing aid! I can still do it and I would hear better. Wouldn’t that be good?”

“No, I won’t allow it.”

I stood up from my chair, toppling it over. “Amu please! Why? What about it is so bad?”

“Don’t you see how your aunties look at you? It’ll be worse if you do this! I can’t let people shame you for it, my baby,” she said softly.

“But who cares how those people look at me!? This is for me, not for them!”

She hugged me tightly, gripping onto my shirt. “Please, no more. Don’t bring this up again, please.” 

I felt anger rise in me, but what could I do? She loved me in her way, and I loved her too. It is her fear of others, not of me, that led her to this irrational decision. I rested my head in the crook of her neck and said, “Alright, Amu. I promise.”

Because my mother holds power over my medical care, I must wait until I turn 18, in another three years, to get the magnetic implant surgery. 

Forgiveness 

I could recognize that my mom wanted to protect me from stigma, but I didn’t know how to convince her that her choice hurt me more than others’ judgment did. I wanted my anger to transform into hatred so I could disregard my mother’s words, but I couldn’t because I still loved her. 

Ori has helped with my struggle to forgive my mom. I recently texted him:

I wonder if I can learn to forgive my mom.
          Or learn to not love her. 

I don’t think you’ll ever be able to not love her. 

      Shouldn’t she love me too, unconditionally? 

She should. I think it’s a matter of loving them but not
letting their hurt consume you. 

                                         I think I can forgive her, for my sake. To let go
    of what she’s made me feel, even if I still love
  her.  I can move on. I can live.

You can. I believe in you.