The dreaded cochlear implant (CI) topic

We've known I've been half deaf (little 'd' for physical) for a long time now, and the time I've been deaf has been even longer than we've known about it. In the time since we've learned about it, there has been one question that people ask that has come to be quite painful. And that is the question of whether or not I have heard of cochlear implants, or CIs, or why I haven't decided to get them yet.

         

I have had this question asked of me from many people, most of whom I had only just told I was half deaf. And most people who are deaf (only physically deaf), Deaf (physically and culturally Deaf), or hard of hearing HATE this question. It's not a matter of some liking or disliking the question, it's more a matter of whether they loathe, despise, or hate the question. And here's a short list of why we hate it:

1.     In most cases when this question is asked, my health choices are none of your concern. If you are not family, or are not a very close friend, it is simply none of your business. If I decide I need a CI, that is entirely up to me, not you. I do not have to explain myself to you, nor do I need to convince you that I don't need one. You're the one trying to convince me to buy a $10,000 device that they surgically put inside my skull.

2.     By offering the idea of a surgery to "fix" our deafness, you are implying that we are not functional without it. And we most certainly are. Otherwise, we wouldn't be having this conversation, would we? It's actually quite hurtful, because it makes us feel like we're verging on being non-human.

3.     Just as I do not offer you a suggestion for you to have a major surgical procedure on a topic about which I know nothing, you should not be offering suggestions to me about life threatening procedures about which you know nothing yourself. Do you even know how much it costs (and no cheating by looking at the first reason on this list)? And do you know the risks?

4.     I've been physically deaf for my entire life. Do you think I have not heard about this procedure from my ENTs, audiologists, well-meaning-nosy friends, family, and complete strangers? If I wanted it, don't you think I'd have tried to get it?

5.     Do you realize that the procedure requires drilling one hole completely through my skull and putting wires into my ear to run an electric current into my cochlea, and then drilling another hole halfway through my skull wall to put in a processor? Seriously, do you have a death wish for me?

Image from : 9GAG.com

Two worlds, two perspectives

           It's confusing, being me. I'm stuck between two worlds, well, four really, but for here we'll deal with two of them. One is a world which hears and loves sound, and heaven help anyone who gets between a hearing person and their music. The other is the Deaf world, which has varying levels of access to sound, and enjoys the quiet of their Deaf or limited sound world. I am stuck between the two.

I was born half deaf (small "d" for physical deafness), only one ear hearing. My family is hearing and cannot imagine a life of silence. I grew up speaking and, for the most part, appearing to hear as well as everyone else. But understanding what is said has always been hard. However, there has always been the unspoken expectation that I behave like I hear, and keep my deafness secret.

Then I met Ms. J. (name concealed for privacy), an ASL interpreter. She encouraged me to learn ASL, and to interact with the Deaf community. So I took up ASL at my local community college and the Deaf world was burst upon me. I was accepted, my deafness wasn't a dirty little secret that I had to hide, it wasn't something that made me inferior. I wasn't broken, just different. My deafness was shown to be an undeniable part of me that I could treasure, instead of hiding.

And therein lies the tension. I'm not broken, but everyone thinks I am. I'm not to be pitied, but everyone does. I could just as easily pity you for living in a world more saturated with sound than a wet sponge, as you can pity me for not hearing what you hear.

The truth is, the more I accept my deafness, the more I like it. I like my cozy quiet. I like not being bombarded with sound. It's me, unaltered, unashamed.

But the fact remains, most people I know hear and don't sign. I love them and I want to connect with them, so I wear hearing aids to connect with them more easily. But I don't need hearing aids. The hearing aids don't make me more equal. They simply bridge the gap between me and you.

Yesterday, I went to the audiologist, and they told me I need to wear my hearing aids more to get used to all the background noise. But I don't want the background noise. I don't need to hear all that. She thinks I'm broken, and she needs to fix me so I can be that elusive thing they call "normal." But I'm not broken; I'm different. I'm not looking for a fix; I'm looking for a bridge between me and others, like a man from Japan coming to America with a Japanese-English dictionary in hand. He is not broken, nor is he deficient. He is simply different. My hearing aids are my dictionary for your speech, and sometimes, even then, they don't have the words you say because they do not change me to be like you; they simply bridge the gap.

But because my loved ones struggle to bridge that gap themselves, often not knowing how to do it, I wear my hearing aids to become that bridge. But it costs me.

How does it cost me? Well, monetarily, hearing aids can cost as much as a used car. They are very expensive. But more than that, I have to forego my own desire not to speak and my own wish to live in quiet, to speak with my loved ones. It takes effort, especially in crowds, to understand what is said. It is, quite literally, exhausting. And in the process, I feel like I have to deny myself, my deafness, which is an intrinsic and precious part of me, to communicate in the culture and norms of my hearing family and friends.

And this causes a great tension within me, as I walk the line between two radically different, and often directly opposing cultures. To be honest, there are days where I loathe the sounds that are all around me, longing for total silence, and yet, there are other days where I long to wrap myself in the cloak of normalcy, to be like my loved ones. Yet neither is something I can fully be, and I walk each day with that inner tension, pulling me towards two different worlds.

Open letter to hearing friends and family

Dear family and friends,

            This last Christmas, I'm sure you all noticed me and Mum signing. And some of you told me to stop signing. Some of you seemed quite frustrated with me, and what I was missing, or my odd behavior. There is something you need to know:

            I am going Deaf. In the past, I could pass off as hearing as well as you. I can no longer do that. I am completely Deaf on my left side. Nothing gets through that side. My hearing aid on that side doesn't even help that ear, but only acts as a radio to send the sound over to my right side. And now, my right side is also mildly hard of hearing.

            I am beyond tired of pretending everything is okay when I walk into a family or public event. And I will never stop signing. I am going Deaf, and when I become fully Deaf that will be my main mode of communication. It makes you uncomfortable? Put yourself in my shoes; missing over half of what you say and being left out of everything is misery. It turns every family and social event into a nightmare.

            When I sign, the world opens up to me. I can understand, I can communicate, I can connect. I am no longer cut off from the people I love. When you tell me not to sign, you place me in a cage, where the words I can't understand make the bars of that cage. Only random words are discernible from the myriad of sounds surrounding me. I can't leave without being rude, and yet you deny me the only way I have equal access to the conversation. You laugh, and I ask what happens, and you tell me that you'll tell me later, though we both know that that later will never come. You talk about plans and events, things that happened in your life, but I never know, because I can't hear you.

            And I can't take it any more. Your words fly around me, but mean nothing to me. I know I'm missing out, and it will only get worse as time goes by. I try to express myself in body language, because I'm trying to break out of the wordless sound I'm in, and you tell me to stop being so childish.

            How can I break free? You won't let me sign, you won't accept my body language that I use to express myself when words fail, and thus I am cut off from my own family and friends.

 Don't you love me enough to face a little discomfort so I can be in your world? Every day is discomfort for me. A fear of a stranger yelling at me because I don't understand; nodding and smiling when people are talking because everyone else is, though I have no idea what they're saying; seeing people laugh, and knowing I miss the punch line and missing feeling the sweet comradeship there is in laughing together; having a store clerk ask me a question, and having to stare at her with an uncomprehending smile without a clue of what she's saying. Can't you take the time for a few hours to face discomfort so I can know what is going on in your lives? When I ask mum to interpret for me so I don't have to rely on my weakest sense, can't you realize that I ask because I care what you have to say? And when I can't hear at all, can't you realize that I sign because I don't want to be alone, and not because I don't want to exclude you? That I sign because your speech is excluding me, and I don't want to be alone any more than you do?

I come to events because I love you, though it takes all my effort to understand. If it were just me, I would stay home and read a book, or blast music that is loud enough for me to hear. Honestly, every event where I have to hear is exhaustion. Can't you love me back by trying to help me instead of hindering me? All you do is complain about what I'm doing. Is it really loving of you to pretend everything is ok and to make no effort to help me, but to hinder every attempt I make at trying to hear you? If you will not help me, then what can I do?

I can no longer pretend. I am going Deaf. I struggle to hear you. If you will not help me hear you, then I will stop trying to hear you, because if it is not important enough for you to help me understand, then it is no longer important enough for me to waste my energy on it. If I cannot sign, if you will not write out difficult words that you've said, if you will not accept that my loud body language makes up for what I cannot seem to express in the sound I am slowly losing, then I will no longer try to come to your events, for there is no purpose for me to come. It is little better than seeing an old movie of you with the sound almost muted. I love you, but I cannot pretend any more that I can fully hear.

Sincerely in CHRIST,

Kiwi