Deafer than I am

Ok, confession time; I'm not always as deaf as I seem to be with people I've just met. Yes, I do pretend to be more deaf than I am sometimes, especially with strangers. There are also other people who do the same thing, too when they're hard of hearing. It's actually really hard not to do it.

So what do I mean by pretending to be more Deaf than I am? Well, here's an example; I'm in the store and a worker walks up to me and says something that really sounds far away or quiet enough that I'm almost not hearing it. Now, most people respond normally, but for me, I automatically ask them to repeat themselves, explaining that I'm half Deaf. I did hear them, and I also understood them. However, I'm not trying to deceive them about what I can or cannot hear. I'm not trying to be dishonest, but am actually doing this for a very good reason.

Why do I sometimes pretend to be deafer than I am? Short answer: so other people don't get mad at me. It sounds counterintuitive, but it actually is a very good way to manage other people's understanding of how much I can hear. You see, most people who aren't around Deaf or Hard of Hearing typically see deafness as a black and white issue. You are either hearing or you are deaf. No gray area for them. And that actually is about as far from the truth as you can get. Deafness can manifest itself in so many ways that you have to approach each individual as having their own type of deafness. They might not hear low sounds, they might not hear high sounds, they might not hear speech but the rest of their hearing is fine, they might have tinnitus which drowns out sound, they might have one perfect ear and one bad ear, etc. There is no single type of deafness. And most people don't get this.

Not only that, deafness is a hidden difference. We don't walk around with big signs that say, "Hi, I'm Deaf (or Hard of Hearing). If I don't respond, I'm not hearing you." Instead, if we miss something, it just comes off as rude, because people think we're ignoring them on purpose, which is generally not the case at all.

And here is where pretending to be deafer than I am comes in. When I ask people to repeat themselves when they are almost out of my hearing range, or are just within my hearing range, I'm helping them understand from the start that that area of their speech might not always be something I can hear. I'm setting up for them the expectation that I am not always going to hear them. So if I miss something, they don't yell at me for ignoring them, or think I'm being a jerk. I've already established a baseline with them that I do struggle to hear.

Now, is this deceptive? Well, that is a very good question. And I honestly don't know. I use it as a tool to show people that I struggle to hear, but my intention is not to deceive. There have been a few occasions where people have thought I hear nothing without my hearing aids, and they were scary enough that I didn't really feel up to the task of correcting their misassumption, and in fact, I rather capitalized on that assumption to keep from having to try to understand them in spoken conversation. However, that is very rare.

But that is the struggle of every Hard of Hearing person. We're not fully Deaf, and we're not hearing. And in order to ensure that we aren't seen as jerks, or to ensure that we don't get yelled at by someone who thinks we're ignoring someone else, we try to establish early on that we don't hear well. I've actually almost gotten in big trouble with a very big, very angry black man who happened to be up in arms about me supposedly ignoring a very lovely black lady behind me, who was practically whispering for me to please move so she could get through. I'm very lucky all he did was yell at me to move. (In case you were wondering, I had no idea she was behind me, and the moment I knew she wanted through, I happily moved out of her way.)  And that's why we manage expectations of how much we can hear. Because we've all had a situation where we missed something and it either could have turned out to be very bad for us, or did turn out to be very bad for us, and we never want that to happen again. It's a form of self-protection. 

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

Real talks: Isolation

Did you know that being Deaf or HOH can feel really, really lonely?

I was born completely deaf (physical, not cultural) on my left side. I've never known anything different. To me, that was just life. I thought everyone had one quite ear and one loud (read that as hearing) ear. The concept of deafness was not really introduced to me.

In private school through pre-school, kindergarten, and first grade, I really struggled, and my teachers were actually going to hold me back because of how much I struggled. Friendships didn't really happen there, either, so that was also missing. My grandmother, GOD bless that wonderful woman, picked up that burden and homeschooled me. She gave me the best education I could have ever had. I don't think anyone could have given me a better education. Still, she didn't know I was deaf on one side. She and Mum suspected something was up, but had nothing to really go on.

We found out when I was 9 that I'm deaf on one side. I've told the story of how we found out HERE.

After we found out I that I'm partially deaf, Mum found a hearing gal at church who knew some sign language and asked her to teach us. Oh, so bad...that was horrible. We met once a week, with basically only vocabulary words, had only two other students besides Mum and I, we never met any Deaf, and learned nothing about Deaf culture. THAT didn't last long. We gave up on ASL after that. She was not a good teacher.

About six years ago, my hearing on my good side began to gradually decline. It took us the past six years to see this decline, and we don't yet know why I have it. (I really need to get a hold of a Neuro-otologist, but that means I have to use a phone ...*cringes*) It's a slow decline, but it's there. My upper range on my right side is now going, and if I'm anything like my mother and grandparents, this will likely be a steady decline for the rest of my life.

I started learning sign language last year, and I was hooked. However, I'm the only one in my family who signs much. Mum knows a little, but it's not the same as having someone who practices a lot.

So now I really cannot hear much in crowds, and am still gaining proficiency in ASL. I have no complete language to use in public settings where I'm not missing something. This is a really big disadvantage at church, because people don't understand what deafness is, other than the medical side of it. And sometimes, not even that. Trying to communicate at church is hard, and it's even harder when people speak quietly, or even just stop talking to you because it's too difficult for them. I tend, now, to gravitate towards louder people in church, but even then, I'm still missing out.

So, in terms of a social life, I have almost no friends, and any friends I do make tend to drift away, because it's so stressful to try to communicate. I feel so lonely, so very much. I wonder if this is how other partially Deaf people feel.  

Graduation Parties - the BANE of every Hard of Hearing person's existence

So, recently, we had a graduation party for a cousin of mine, and I attended said party. Now, I love my family, but I did not want to go. However, it's a graduation for a close family member, so I'm obliged to go to support them.

Now, a party for everyone else is a fun social time. For a HOH person, it's just another reminder of what we're missing out on. Someone talks to you, you sign and voice back, and they look at you like you've just announced that you have a highly contagious disease, or like they've discovered that you're a blithering idiot, and they walk away. That or you become the "special" family member that everyone is asking questions from; which, I suppose is ok, if it's about Deaf culture, but for a Hard of Hearing Introvert, well, misery ensues.

What makes it miserable? Well, as my pastor always says, "I'm glad you asked."

The first misery is that it's just too loud. A HOH person needs to have everything else quiet or else the words just blur into into the background, with occasional words or phrases, and if you're lucky, complete sentences, standing out from the background of incomprehensible words. Everything sounds like rocks in a grinder, or like a stone mortar and pestle being used. Even worse if there's background music, which there was in different parts of the house.

Upload.wikimedia.org,. N.p., 2015. Web. 16 June 2015.

Then, someone introduces themselves. You say hi, and sign "nice to meet you" while voicing, so that they know you're Deaf or HOH. If you're lucky they sign back, or at least continue talking with you. If not, they look at you like you've just become beneath their dignity, or at least not worth the effort of talking with, and they walk away.

Now, if you find someone who signs, it's delightful. Even if they're newer, or it's been a long time, they are generally excited to sign with you, and it can be so much fun. I got to sign with a young mother and she not only enjoyed the chat, but she explained why I was signing to her children, using it as a teaching experience. She was teaching them about Deaf/HOH and was helping them understand me. It was very cool!

However, sometimes, hearing people are really enthusiastic to meet you. VERY enthusiastic. Especially if you can speak. I think I got grilled on my deafness, knowledge of Deaf culture and ASL for at least half an hour by an older gentleman. Let me tell you, it was frustrating and yet kinda cool at the same time. Weird how those two can go hand in hand sometimes. It was cool that he wanted to know about Deaf culture, but he was so annoyingly intent on learning it that I couldn't even talk with anyone else. I felt like I was being interrogated. At one point, it wasn't just one guy, it was four or five people, and the rest of the time there were people coming in and out listening and asking questions. Oh my word, so exhausting. Especially when you're Deaf/HOH, and introverted (the definition of introverted here being that I recharge when I'm worn out by doing solo activities, generally creative things, while being social drains me like you wouldn't believe.).

Oh, and pet peeve; DON'T LOOK DOWN WHEN YOU ARE TALKING TO ME, OR WHEN I AM TALKING TO YOU! Just, don't. If it's when you're talking and I'm trying to listen, I can't lip read you, and probably can't hear you if your face has something between me and you. And if it's when I'm talking, I think you're not listening. In Deaf culture, it's EXTREMELY rude to look away when someone is talking, and continue looking away. I don't know about glancing away for half a second if  movement catches your eye, but I know that for me, I get frustrated when I don't see your eyes and mouth when I'm talking with you. Just...look me in the eye, PLEASE.

In short, if you have a HOH friend for family member, and they want to skip your party, let them. PLEASE, have mercy on them. It is not fun. 

Glory To GOD

I hate being hard of hearing sometimes. I'll just say that straight up. I'm tired of struggling to hear people, I'm tired of having to explain, and I'm just tired of trying to hear. It's truly exhausting. Am I ashamed of being hard of hearing? Well, no. But I'm just plain tired of the struggle. It gets old.

But look at these verses:

Psalm 139:13-16;
 "For YOU formed my inward parts;
YOU wove me in my mother’s womb.14  I will give thanks to YOU, for I am fearfully and wonderfully made;
Wonderful are YOUR works,
And my soul knows it very well.
15 My frame was not hidden from YOU,
When I was made in secret,
And skillfully wrought in the depths of the earth;16 
YOUR eyes have seen my unformed substance;
And in YOUR book were all written
The days that were ordained for me,
When as yet there was not one of them.(NASB)"

John 9:1-3; "As HE passed by, HE saw a man blind from birth. 2 And HIS disciples asked HIM, “Rabbi, who sinned, this man or his parents, that he would be born blind? 3 JESUS answered, “It was neither that this man sinned, nor his parents; but it was so that the works of GOD might be displayed in him.(NASB)"

1 Corinthians 1:26-28; "For consider your calling, brethren, that there were not many wise according to the flesh, not many mighty, not many noble; 27 but GOD has chosen the foolish things of the world to shame the wise, and GOD has chosen the weak things of the world to shame the things which are strong,28 and the base things of the world and the despised GOD has chosen, the things that are not, so that HE may nullify the things that are. (NASB)"

2 Corinthians 12:9; " But HE said to me, “MY grace is sufficient for you, for MY power is

made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of CHRIST may rest upon me."

~~~

Did you catch that? HE MADE ME. This is not a deistic view of human creation, where GOD set the world in motion and human birth is just a common natural process. HE MADE ME. HE FORMED me. I was MADE this way with a purpose. I was "skillfully wrought." Not a mistake, not an accident, but created purposefully by a perfect GOD.

Why was I made this way?  It was "so that the works of GOD might be displayed" in me. Because HE chose me to shame the strong and to nullify the things that are by displaying HIS glory through me. My deafness is not about a mistake; it's about a divine and holy purpose set in motion to glorify GOD.

Does this mean that GOD did this solely for my good, like in Jeremiah 29:11? ("For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope." ESV) No, because that was a promise to the Israelites in the Sinaitic covenant. That promise is not valid for Christians. JESUS said in John 16:33b, "In the world you will have tribulation...(ESV)" Not might, WILL. So this is not about GOD doing something for me to make my life easier. Believe me, it's not easier.

This is solely for the glory of GOD, so that what HE does through me can only be contributed to HIM, for HIS glory and HIS honor. HE made me hard of hearing so that when I serve HIM and others see, they will realize and understand that it is not through my hearing, my ability that I do things. It is so that they realize that it is GOD who is working, and not me, and give glory, honor and praise to HIM. I am Deaf/HOH solely for the glory of GOD, and I am thankful.

Why am I thankful? Because my struggles will not be wasted in meaningless despair. They will be used to glorify GOD and honor HIM. So I am not cursed with a disability, but blessed with an opportunity to glorify GOD, even though it is hard.