The thing about being me is I don’t exactly fit into the hearing world. But I don’t exactly fit into the deaf world either. I don’t pay attention to hands moving, unless it’s to accentuate the shapes their mouths make. But I can’t turn around and hold a full-fledged conversation with someone standing behind me either. My version of hearing involves context clues, lip-reading, and making the most of my hearing aid. It’s in this way that I often pass for hearing.
But I cringe every time I hear someone speak in a deaf voice, their words sounding out what it should look like, rather than what it sounds like. The whining tones annoy me, irrationally, because I would sound like that too if it weren’t for modern inventions.
I don’t suppose I’ll ever know what really happened. My mother’s side says I was born deaf. My father’s side says I had an ear infection and lost my hearing. Neither side accounts for my ability to speak as clearly as I do, with the exception of an s, z, x, and ch. It’s pretty difficult to repeat sounds you can’t hear; after a while, between the fast speaking and the overactive brain, my language can get sloppy. I can pronounce the hiss of an ’s’, but more often, it sounds like a ‘th’ because I simply don’t care enough to focus on bringing my teeth together. I can pronounce the choppiness of a ‘ch’, but that requires moving my tongue to the back of my mouth, when I could just leave it behind my teeth for a ’sh.’
My kind of hearing works for me. I can take my hearing aid out when I’m tired of hearing the world, when I’m tired of hearing just how much noise there is, when I just want to curl up with a book and read and rely on my visual sense and imagination instead.
But then, my kind of hearing was challenged. Mysteriously, randomly, some of the nerves in my cochlear wiped out, and took approximately 30 decibels of sound that I previously had had with them. For someone who was only operating at about 27%, 30 decibels is a lot to lose. I was suddenly plunged from severe to profound, the last label before you fall off the cliff into total silence. I wanted it back. My hearing aid was no longer powerful enough; I had to adapt. Certain sounds got lost. I used to be able to hear most birds chirping with my hearing aid. I couldn’t anymore. I used to be able to hear crickets and sopranos hitting the highest notes. I couldn’t anymore. My speech patterns changed; they became sloppier. I couldn’t have a conversation with someone standing behind me as easily anymore; I needed to really focus on lip reading to understand the words tossed my way.
When I had lunch with my childhood best friend a year ago, she immediately noticed the difference. She said, “You sound a bit different. And you never had to pay this much attention to me when we were younger.” It was startling, but acute the way she so accurately diagnosed the changes.
I had the opportunity to recoup my losses. Still do, in fact. When those 30 decibels wandered away, I became an unlikely but eligible candidate for a cochlear implant; a device that for all intents and purposes recreates the cochlear and electromagnetically works to simulate sound in your ear.I was warned that I heard so abnormally well with my hearing aid that I may never reach that same stage with my cochlear implant.
It didn’t matter, I said. I’m impulsive at best, brash at worst. Just give me the implant, I said. I was afraid of not being able to communicate anymore, of losing the grip I had on the hearing world, of my connection to my family and friends. Who would hire me if I couldn’t hear anymore? What would I do? I took so much for granted, the idea of not having any hearing at all scared me out of my wits.
So I had the surgery. I woke up with a sore neck from my head being turned all the way to the left so they could operate on my right ear. I missed the American Idol finale where Ruben Studdard beat out Clay Aiken, which I thought was a travesty. I was knocked out by pills, though I don’t remember being in much pain. Just feeling the scar behind my ear, where they had sliced open my head to relieve pressure on my ear. I can still feel it sometimes, a line behind my ear, though no such line exists anymore.
A month later, they turned the implant on for the first time. And for the first time in twelve years (as I had flushed my hearing aid for the right ear down the toilet accidentally on purpose when I was seven), there was sound filtering through my right ear. It didn’t sound like much. White noise, maybe. But it was sound, nonetheless, where there hadn’t been sound before. Suddenly, I was faced with the reality of it all. There was sound coming from my right ear, while my left ear kept disappearing. There was sound coming from my right ear, but my brain was so unprepared, I had a sudden headache. How do you retrain your brain to hear? To translate the signals sent from false nerves from the ear that had previously been as useful as an appendix.
I would take my hearing aid out and listen to music with my cochlear implant on. I could pick out the rhythms, the bass, but how much of that was from memory and how much of that was from actual sound? Suddenly, I was faced with my worst fear. It wasn’t about losing my hearing. I had done that. I could handle that. But what if this implant, with my hearing aid, showed me all the sounds I didn’t know existed before? It’s a bit like telling a full man he’s still hungry. How can you know he’s hungry if he feels full? I felt that I had all the sound in the world that I needed. I could hear my cats purr, I could dance along to the beat, I could even listen to the quiet still of a summer night at my parents’ camper. Was I ready to recategorize the world, when I thought I had it already carefully labeled?
So I put the cochlear implant down. Five years later, I’ve only touched it here and there. The magnet in my head is a party trick, to stick refrigerator magnets on and joke about how I’m the most electronic of all my friends. Until last night, when I watched a documentary about a couple who decide to get cochlear implants at the age of sixty five years. Sixty five years of never hearing sound, and they’re willing to trade all that to hear what the rest of the world can. Was it easy? No. Is it ever easy?
But I wonder. What am I so afraid of? Even as I write this, I still can’t summon the courage to take out the cochlear implant and tuck it behind my ear. What would have to change for me to accept it? Am I waiting for more decibels to drop, to lose my hearing for good? Am I waiting for some sort of sign, that I’m ready to hear again, if I’ve ever heard before? Or am I just really…a fucking coward? Who will let her fears of not knowing the world as it was anymore override her fears of never hearing again?
The trouble with my kind of deaf is you don’t really fit in either category. You hear but you don’t. You reject the deaf community outright, but you don’t exactly fit into the hearing one either. Is it time to make a change?
you are courageous for writing this, and for that, i admire you.
I loved this piece, you are such a brave woman DS. I think you will use it when you are ready, maybe you just aren’t right now. When its right you’ll know it. Maybe it’ll take a little coaxing but when you are ready you’ll take that step. . At least you have the option, its there and you won’t have to make the decision to get the surgery again.
This was such a raw, beautifully written piece. Thank you for sharing
gorgeous writing. the honesty of this makes it beautiful and compelling. it drew me right in even though i have never been in your situation. i agree with ashley. go with your instinct. only you will know when or if you ever need to use it. thanks for sharing this.
You are very strong. The way you wrote this is simply excellent. I’m with Ashley, that you will use it when you are ready.
On a side note, J didn’t know that you were deaf, and she didn’t even notice it when you guys met at your bday bash. Methinks you’re doing just fine
I agree with Ashley and Yoda. Don’t be so hard on yourself. You don’t have to do anything. If you don’t want to use it, don’t push yourself into a life you aren’t sure you want.
This was really a wonderful article though. It really makes you think. You seem to be all around amazing.
Wow, I really have no good advice for this. I think you should follow what your heart says and do what’s most comfortable for you.
Also? Thank you for sharing. I’d been wondering about this and was a bit afraid to ask. I just thought it might’ve been rude.
These posts about your hearing fascinate me. It’s something I don’t have much way to relate to and, like others, I am just worried about saying the wrong thing.
Anyhoos, wear it when you want to. Do what you gotta do to make yourself feel good. Big changes like this are always scary.
Seriously. Any questions you have, I’m happy to answer.
I don’t know if I’ve ever told you this, but I have 4 deaf relatives and soon to be a 5th marrying into the family in a couple of months. Hearing is definitely something I stopped taking for granted a while ago.
IKudos to you for being so brave throughout your life.
My hometown is home to a deaf school. In fact, my mom works there, so I’ve grown up witnessing the culture and how protective they are of it. I’ve taken many ASL classes and can generally ‘read’ sign language, but have more difficulty signing myself. Anyways… I just mean, I know this must be a difficult choice for you. This post is amazing and so honest. Although I don’t have an opinion either way as to what you should do, I once learned that the earlier one uses/gets a cochlear, the better the chance for neural pathways to be formed for hearing. Not sure if that persuades you either way, but I remember learning that in my Sensation&Perception class for Psychology.
Good luck on your decision.
Man. I’ve heard rumblings about the “controversy” over implants but I’d never really understood any of it until this post. I still don’t understand, of course, but I feel like I’ve been enlightened some. I don’t have any answers, just awe for what you’re experiencing and, as always, for the words you plucked to describe it.
i love reading about life from completely new perspectives. sometimes, i feel you and i are very similar when i read your writing, but days like today, i think just how much you have to teach me about things i’ve never experienced. so thanks for that.
I loved reading this. Like the others have said, it’s a great way to see things froma different persepctive. Kudos!
It is absolutely up to you.
You see, you have this way of categorizing the world that most of us cannot relate to. The one you grew up with and the categories you made for yourself is being thrown off kilter, of course you wont accept it right away.
I say you know best. Pick it up when you are ready.
This is why I love reading you. <3
wow. as a semi-new reader i’m not sure how i can respond to this post with advice.
but i do want to say how much i enjoyed reading this and learning that much more about you.
: )
I don’t think any of us have the answer for you. You’ll know the right time to use that implant again. Maybe it’ll be from watching a documentary. Maybe it’ll be so you can hear your (future) newborn child cry out in the night. Whatever the impetus, there will be one. And if not, it sounds like (pun intended), you’ve carved out a pretty darn good life for yourself. Don’t knock what you’ve got.
beautifully written. that’s the thing i love about blogs…i get to learn things about people and their experiences that i would have never ever known.
this was beautiful ds. obviously you know what’s the right answer is for you. i miss you and all your wackiness.
sob.
I have a friend who is partly deaf due to a condition in her teens–the funny part is, she didn’t fully realize she was deaf at the time, and neither did her parents, until they took her in. I guess because it was a slow ailment, she just adjusted to watching lips more? It’s odd.
Anyway, it’s hard not to fear change. But it almost seems like you are letting your first mishap (losing 30 decibels you once had) make up your mind for you–that you’ll never risk a loss of what you had again. That may be an unfair reading of the situation, because all I get to see is this blog post. But just a thought: we never really are in control of anything, and trying to be in control of the uncontrollable isn’t worth it.
I know exactly how you feel. I was born with a 60 decibel hearing loss and thanks to Waardenburg Syndrome, I was categorized as profoundly deaf by the time I entered college.
Since my hearing was degenerative, I learned to speak very well and most of the time people can’t tell I’m deaf until they notice how many times I say, “Huh? What? Ma’am? Sir?”, or when I hear the wrong word. It’s pretty bad when Weather becomes Leather.
I got my implant two years ago at MCV and I barely remember what it was like to hear even partially out of my right ear without the implant. The implant has become just another part of my life, just another part of deafness, the removal of which makes it that much easier to ignore the assholes. Even now with it off I can barely hear my rather hard keystrokes with what’s left of my left ear.
I know Exactly what you mean when you say my kind of deaf. We got a foot in both worlds, but not really in either. Some days I just want to bring that stuff they use to make ear molds and stop up the professor or my bosses ears for the day, just so they know how I feel. Hell, some days I’d settle for boxing their ears.
But then there are the funny aspects of my kind of deafness. When I went to my first scifi convention, someone recognized the cochlear, pointed toward me and said “BORG!” I’ve since embraced the title.
The second was something said by a certain campus preacher when I disagreed with what he had said. He responded by yelling, “YOU DO NOT HAVE THE EARS TO HEAR!” I responded with, “Yeah! I’m deaf, dumbass!” Needless to say I was bought at least one drink for that one.
I empathize greatly with you. We’re stuck in between these two cultures, yet not really a part of either. I admire your fortitude and hope to talk with you some time.
Roy Roberts,
Virginia Commonwealth University