That’s Intense: Understanding the Decibel Scale
February 27, 2014
I Don’t Hear Very Well
March 7, 2014

But You Look So Normal

It’s easy to pretend that I am just like everybody else until someone blurts out a subtle, but painful statement.

“But you look so normal!”

Christina Lisk

Those words were uttered to me in the library after another student lost her temper because I could not hear her whispers. My response to her irritation was to pull out my hearing aid, wave it in her face, and say, “I’m sorry, I’m hard of hearing. Could you repeat that?”

“But you look so normal” is not the first instance of prejudice I have encountered. Plenty of schools have refused to accept my loss, have tried labeling me as ADHD, and forcing drugs down my throat. The word “retarded” has commonly been tossed my way on days when I repeatedly miss words. Repeatedly my hearing loss cost me AP and honors courses. Boys were afraid of my hearing loss and refused to date me for nearly a decade. Phrases like “but you look so normal” especially hurt, as they remind me of why I struggled to “come out” as a hearing impaired individual.

Accepting my hearing loss has not been easy, especially since it came from ear infections that destroyed the whole drum in my right ear and half in my left.  At age twelve, after a lifetime of health problems, I had my first tympanoplasty: a procedure where skin or cartilage from the outer ear is used for eardrum reconstruction. The skin graft fixed my left eardrum on the first try. Two skin grafts on the right ear repeatedly grew, but would blow out with even the smallest cold. A cartilage graft was anchored to my skull, in hopes that it would hold better than skin. No doctor anticipated that the cartilage graft would tear the skin I had left, or that another cartilage graft would limit the movement of the drum.

Though I am grateful for the health and hearing I have recovered, there are plenty of days where I wish the surgeries were more effective. I think about the odds my surgeons gave me a lot, and the romanticism behind each of them. “90% likely. Surely, this will work” for half a drum and complete hearing in the left ear. “50% likely. Enough to give it a shot” with no eardrum whatsoever. “80% likely—-those odds are pretty good” after three quarters were built from nothing, and 70% of my overall hearing was restored. “99%–this is guaranteed to work”, when the first cartilage graft was implanted.

The last one still haunts me to this day.

“We don’t know. There have only been two other patients who have had your problem.”

I am particularly reminded of these odds when I hear a statement like “but you look so normal” because that’s what I wanted to be for so long. Each surgical failure, however, brought me further and further away from that possibility. The second cartilage graft gave me an eardrum, but required lifelong assessment by an ear specialist. That, in and of itself, was hard to admit-—the idea that I could be hearing impaired as well was unimaginable. I had spent my entire life fighting ear infections, and five years repairing the subsequent damage and battling my body. How could I lose? How could I still have a 30% hearing loss? How could I literally shed blood, sweat, and tears, for years only to find that I still could not hear?

I wanted to think that I would gain a clear, resounding answer: “I can hear! I don’t need a hearing aid anymore! I am normal!”

Four years after the surgeries stopped, the answer is still far from clear.

The only place I found anything resembling an answer was in the outcome of my junior year in high school. I would spend day after day studying until one in the morning, only to find I could never understand class material or perform well on a test. Everybody I knew sounded like they were constantly speaking another language. Frequently, I came home from school with splitting headaches, vertigo that (ironically) left me horizontal, and nausea that made me greener than spring mix. I knew what each of these symptoms told me, but I did not want to heed the answer.

As I started my college search, however, the answer became unavoidable. A college counselor saying I “would be lucky if I got into college” and abominable academics forced me to admit defeat and wear a hearing aid. Coming out as hearing impaired in my senior year of high school allowed me to turn around my academics and, “by the skin of my teeth” as Katherine Hepburn would say, gain admission to Bryn Mawr College. Following this accomplishment, I graduated high school with six academic awards—-higher than most of the people in my class. On the surface, I could pass as a “normal”, highly accomplished individual without any loss whatsoever. The longer I passed as a person without hearing loss, the more and more I believed it to be true; to the point where I made a mistake that was far worse than denial.

Out of a desire to pass as a “normal” human being, I placed my value in my hearing equipment and believed myself to be worthless without it. “Normal” felt like the only thing I could be, since, with a 30% hearing loss, I was no longer “deaf enough” to fit deaf culture. When my hearing equipment repeatedly broke during college, however, I had to re-evaluate why I placed so much value in appearing “normal.” The surgeries and hearing aids left me in a bizarre limbo since I did not the match the criteria for “deaf” or “normal” standards.  All I wanted was to find a home—-a place where I knew I belonged. Statements like “But you look so normal” hurt more than I ever wanted to show because they reminded me of this constant limbo. Who else out there was like me? Where did I belong? How do I fit into society when I have no real culture?

The closest I have come to finding those answers is through building an identity that’s bigger than my hearing loss. Instead of labeling myself as a hearing impaired person, I do my best to identify myself as a writer (of both stories and songs), epee fencer, avid lover of the 1960’s, colorful fashionista, painter, adventurer, and bigmouth galore. Thus far, self-identification through these attributes has been my best solution to finding a “home.” Instead of identifying as “normal”, I try to define myself simply as “me”; where my talent, rather than my losses or desire to hide them, takes center stage when I meet someone new. Admittedly, it is not easy to maintain this mindset, and I have plenty of days where I slip up by being too loud or losing my temper (as I did with the poor girl who said “But you look so normal”). Maintenance of this mentality, even on days when I feel worn thin, has helped me answer a lot of my questions, and break away from defining myself by my losses.

I pass my journey onto you, not because I seek sympathy or pity, but because I don’t want others repeating my mistakes. If you are struggling with any portion of your identity and fear revealing it to your kin, do not let that fear overtake your life. Come out with that part of who you are. Even if that portion puts you in a minority, it does not have to define you the way my loss defined me. There is a lot more to you than one piece of your life—though I know the opposite feels true after encountering prejudice. More loss will come, however, from staying closeted than from coming out. I still feel the effects of what I lost from being closeted, and chances are I will feel them for the rest of my life. If you have the chance to take control of your life by coming out, then take it. It does not matter whether or not you deviate from “normal”—-that, as I have come to learn, is something you have to build for yourself.

Three years after coming out hearing impaired, I am still working on my definitions and answers to my questions. While neither of them is perfectly shaped, they get stronger with each passing day. Helping them grow has been the best thing I have done to help myself heal. For those who are struggling or newly out, I hope that answering your own questions and building your own definitions helps you heal too. We all have to “come out” about something, resolve our own issues, and make our own lives. Why not start today?

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Christina is a 21-year-old with hearing loss. She has been writting for the Phonak Open Ears blog since 2014.
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Christina is a 21-year-old with hearing loss. She has been writting for the Phonak Open Ears blog since 2014.