Wishes...do come true sometimes.

It's been over a year since I last posted, and it's been a tough year. A lot of things have happened in the past year or so, some good, some really hard. I've been finding how faithful GOD is in the hard times, and how sweet HIS goodness is in the good times.

I look back at the past post I made, of wanting others to know sign language, longing for others to learn it just so I could feel like family. Feeling so alone and struggling hard to understand. It was a sad and lonely post from a sad and lonely girl.

Tonight, though, was one of the sweetest moments of my life, aside from being saved. Tonight, I felt precious and valued by my church family, like I wasn't just another face in a crowd, but someone they cared about.

My church had a Christmas play that some of the young ladies and the kids put on. It was lovely, with beautiful music, wonderful lyrics, Scripture, and just a lovely evening. I got to sit up in the front row with my Pastor and his wife in some reserved seats. I thought they were reserved for some of the kids to be able to sit down for different parts, or the Pastor's family. Oddly enough, no kids really sat down in the row, aside from one girl, who sat right next to me.

The first song had a little bit of sign language with it. Not fluent sign at all, just simple things that can be taught to a large group of kids who have to learn a LOT of songs. (SO...MANY...SONGS. I'm AMAZED!) I started getting teary, because it was so sweet, but the song was over quickly, so I managed not to bawl.

It was really cute, and I kept waiting for more sign language. Towards the end, I kinda stopped waiting for sign language because I figured they'd just not been able to teach any more signs to the kids on top of all the songs they'd learned. It was still pretty cool!

There were a few songs we had to sing as a congregation, and since I was in the middle of a group, I was stuck holding the lyrics for three other people, and I couldn't sign. Sooo, I had to sing, which I am REALLY not comfortable doing in a large group since, y'know, I'm half Deaf. I think I warbled off key quite a few times. Oh, my poor Pastor and his wife...they were right next to me and had to hear me.

The last song, "Silent Night," we all stood up to sing, and as I looked up, the girl sitting next to me, and three other girls, suddenly moved to the part of the stage that was directly in front of me. And as I watched, all four of them started signing the first verse to "Silent Night" in perfect ASL.

I was...dumbstruck. I cried. I kid you not. I BAWLED. I could not stop crying for the song. These amazing, talented young ladies just blew me away with their kindness in making me feel welcome and a part of our church family.

I felt so valued, so appreciated, so loved, so PRECIOUS! I felt like I was with family. I...I'm still crying right now just thinking of it. I felt like there is a place just for me in my church. I don't have to leave my church if I go fully Deaf. I don't need to rely on an interpreter. I have friends who are learning sign language in my church, and who make me feel like I'm precious to them. Like my wants, my needs, matter.

Ladies and gentlemen, I do not think I could ever find a more amazing church than the one I have.

 Oh, and those reserved seats? The ones up in the front row? They were for me and the other Deaf gal at my church. They were so we could hear better, lip read more clearly, and see the last song signed just for us. They were for us, so we could be a part of it, too.

I wish you knew ASL

Did you ever have something that you wanted so much that it almost hurts? And as much as you want it, you're afraid to hope for it because it will probably never happen? I do.

You all know that I'm culturally Deaf, and physically quite hard of hearing. Because of that, conversations with people are difficult and often stressful. Especially in a crowd, it makes it so difficult. And the louder the crowd gets, the more stressed out I am in conversations, until the point where I can no longer hear what the other people are saying.

Sometimes, I let myself dream of what it'd be like for someone to learn ASL just for me. Just so I don't have to struggle. Sometimes I let myself hope that maybe, one day, I could walk into church and my friends start signing with me, so I don't have to struggle to understand them. And every time I do, I get tears in my eyes, because I don't think that it will ever happen.

People think, because I can talk, that just talking with me includes me. Oh, I wish they knew how much I long to talk with them in ASL! It's so hard to use English when it's loud! People think I cope really well, but they don't know how much I have to let slide, or how much guessing I have to do to carry on a conversation. It's like trying to figure out a code in 5 seconds or less, and every time they speak, I have to figure out a new code, and then respond appropriately. I have gotten very good at the 'smile and nod' response.

 I often wonder how different my relationships would be if I could simply walk up to anyone in church and carry on a conversation. Instead, I have to pick and choose who I talk to based on who I can hear. The group of people in church who I know well is very small, because there are so few people I can hear or speak with easily, and there are very few times where I can speak to them in a quiet environment.

Recently I made the mistake of introducing myself to the Pastor's niece (whose dad is also an elder), thinking she was new to the church, and I wanted to make her feel welcome. Imagine my embarrassment when I realized who she was! And it was entirely because I had never spoken with her because she too quiet for me to hear easily.

 Honestly, I wish everyone knew ASL. But I really wish my friends and family knew it. I miss so much of their lives and of what's important to them, simply because I miss what they're saying.

If someone learned ASL for me, I think I'd cry. You have no idea how much I want that.

Milepost: Officially Having Mild Hearing Loss

I just got back from my audiologist and it's now properly official; I have mild hearing loss on my right side. That's over the space of about 7 years going from normal hearing (actually, a bit better than normal hearing) on my right side, to now having mild hearing loss. So it is confirmed again, I do seem to be slowly, but progressively, going deaf on my right side.

I'm not scared. I expected this. The truth is, losing sound doesn't scare me or grieve me. Sound is unimportant, but people...people you can't replace. And that is why not being able to hear as much sometimes makes me sad, since so many people I love don't sign. It means that relationships where I have to rely on my ears will probably be grow to be more difficult. That is what makes this hard.

It's watching my dad, who can't learn to sign because of his MS, feel like he is going to lose talking with me because one day I might not be able to hear him. It's watching my Mum's rheumatoid and osteoarthritis take its toll on her hands, and realizing that, by the time I need her to sign all the time to me, her hands might be too damaged for her to be able to sign. It's knowing that neither of my grandparents will ever have the ability to sign because of how bad their hands are. It's realizing that the majority of my precious church family, who mean so much to me, don't know ASL, and realizing that it will likely get harder and harder to talk with them, the more my hearing goes. I don't care about sound. Most sound is a nuisance to me. But the people I love...that's where it hurts.

My audiologist told me that if I want to get better help from my hearing aids, I might need to buy new ones. I only got the ones I have 4 years ago, and had the internal parts in them replaced about a year ago. Do hearing aids wear out that fast? I can't afford to buy $3,500+ hearing aids every 4 years. That's EXPENSIVE. And insurance companies only typically help once with hearing aids, and sometimes not even that. And even if they did help, hearing aids don't ever fully fix the problem; they only make things louder, not clearer. No machine can ever replicate the amazing design GOD has put into our ears.

Do I hate my deafness? No. I do like the quiet. It is very peaceful, and it is a refreshing hide away from our crazy, loud, busy world. I go about most of my day with my hearing aids out, and I like it. I do not grieve my deafness then, but I embrace it. It is peaceful. It is how GOD has made me.

But then there are the moments where I'm surrounded by my hearing church family and I can't hear them. And in the crowd of people I love, I feel so lonely because I can't hear, and then I hate my deafness. I hate that more and more I can be talking to someone and I realize I'm seeing their mouth moving, but I literally hear nothing they're saying. And I hate that it's not even scaring me any more, because it's becoming common place. And that is when deafness is so hard, and when I need the most grace from those who love me. Because that's when I am at my lowest.

Living a double life on the Deaf and hearing fence

I wake up in the morning to the feeling of my alarm, shaking and vibrating my bed. I hear the low rumbling as I stagger from my bed to my alarm clock as I hit the snooze button. I'll probably hit it twice. I crawl back in bed in the eerie green glow from my alarm clock. Light highlights the cracks of my bedroom door. I know Mum and Dad are awake.

When I finally emerge from my room and bathroom, to our main family room, the room is bright; brighter than my almost pitch black bedroom. The constant noise of Mum and Dad's bathroom fan annoys me as I walk out of my room. It helps with their tinnitus, but it only annoys mine. My tinnitus isn't high; it sounds like someone shoved my head into a machine room where someone tossed a ton of rocks into the machines. When my ears ring I can almost feel them vibrating, like there's more sound coming from my head than there is going into my head. There is very little that can touch how low the humming is. Thankfully, I don't generally mind it. I don't even know how much I hear it, since it seems to be the backdrop of my world.

I'm greeted by my Mum and Dad with a cheerful good morning. I wander into the kitchen to use our keurig, and I listen to the sounds of the machine sputtering and spitting. The world sounds noisy to me, but apparently I'm missing quite a bit. Though, the spluttering sounds from the coffee maker and the whining, almost static of the bathroom fan don't really leave me with a desire to hear more. More noise just sounds annoying.

Throughout the day, I hear things dropped or moved. Dad talks to me. I crank my music up loud so I can enjoy it.  If I can't figure out where a sound is coming from, the cat probably knows, and if she's ok with it then it's probably nothing to worry about. Only occasionally do I have to ask Mum and Dad to repeat themselves, though this is occurring more often, and I struggle to hear anything outside of the room I'm in. But if you just met me and saw me in my home, you'd think I was normal.

But put me in a crowd or a group and everything changes. My eyes flit from face to face. I tilt my head to understand and hear better, and across my face spreads a half understanding smile. I can feel the pressure in my chest rising, as I beat down my frustration at being pushed out of a conversation by other people. Their words jumble off their lips like marbles, as I switch from looking at one face and mouth to the next. I catch a sentence here and there. Words flutter past, some clearer than others. The more people, the more I can't understand. And the further away they are, or the louder the crowd, or the more people in the group, the more they just blend into the backdrop of static and murmuring. I look away and I understand nothing. It's amazing how much my eyes play into how much I understand of what is said. And I feel alone in a crowd, often times of people I love.

But then I go to a Deaf event. I see hands flying. Facial expressions clarify the meanings of what is said. I don't have to struggle to hear what is said; I see it. If I ask for clarification, no one rolls their eyes or tells me to ask later. I have equal access to what is said, same as everyone else. And I watch as the hands of the signer across me flies in front of them, creating concepts and ideas and building pictures within the space in front of them as they tell stories, or relate their histories, or share their dreams for the future. My hands fly too, as I relate my stories, or my history, or my dreams, or whatever we are talking about at that instance. And all around me are people who understand what it's like to be left out, and willingly include me.

And I am caught in a place where I feel like I am neither Deaf, nor hearing, but am both. My day to day life I live in the hearing world with a hearing family. I am expected to act and speak in the norms of the society around me. But then, in those few precious hours when I am with the Deaf, I am free to act as Deaf. I am free to be Deaf and not play the role of being hearing. And I know then that I am Deaf. But when I leave, I am only hard of hearing, or hearing impaired, or at most, half Deaf; I'm expected to function as hearing as I possibly can. And I'm stuck in two worlds, two cultures, and it is a life that is very different from anything I ever dreamed I would have. And some days it is hard, and other days it is easier. But I never stop feeling this strain of being expected to be two things at once. 

Deaf children: Hearing world vs Deaf world

When my parents found out I was Deaf, there was a level of devastation and a level of denial that happened. In fact, I think there is still some denial, since I speak so well. My grandparents struggled with it, too, and still do. For a hearing family. a Deaf child is a tragedy. A broken child. One you struggle to connect with; a problem child.

Most hearing parents are devastated when they find out their child is Deaf. They go through the stages of grief. They try pretending nothing is wrong, and only a small number actually take steps to reach their child on the child's level, with sign language. Many, however, try to make their child "normal," by working on their speech and lip reading. And they continue grieving. A Deaf child is a tragedy in the hearing world.

But in the Deaf world, a Deaf child is a treasure. Deaf parents love both hearing and Deaf children, but their Deaf child has a special connection with them, because that child is part of the history and culture of the Deaf. It is that child's birthright. They can connect with their parents, their parents understand their struggles. They share a common bond. And when Deaf parents have a Deaf child, they celebrate. Here is a child that they can give all that they never had growing up but truly needed to help them grow and mature. Here is a child that can take a place in the heritage of the Deaf who have gone before them, and move forward with the Deaf into the future. To the Deaf, a hearing child is a dream come true.

Yes, Deaf will always love their hearing children. But there are things that hearing children go through that Deaf can't protect them from. Words are said that the Deaf parents can't hear but the children do. Things happen that the Deaf don't know about, but their hearing child does know about. And because we live in a society saturated in sound, it is harder to protect what our hearing children hear, than what our Deaf children see. Because we cannot hear what they hear, we cannot stop them from hearing what should not hear. But Deaf children our different; all that they have access to, we can access as well, and we can guard them against things that would hurt them. For us, Deaf children are treasured children, and very rare for us to have. Approximately 90% of Deaf children are born into hearing families. That means only 10% get to grow up in a Deaf home, with Deaf parents and Deaf siblings. And thus, not only are they treasured, but they are rare. 

First Joining Deaf Culture, and Family Conflict

When I first found Deaf culture, it was a friend who introduced me to it. It was a Deaf event at a highschool, where I saw Deaf accepted as they are. I was literally in tears, watching as people told stories in ASL, sharing many experiences that were much like my own.  Because of the beauty of what I saw and for the first time, feeling like I wasn't the only one like me, I started learning ASL in the fall of 2014.

When I joined the class, we were assigned some books to read about Deaf culture, and as I read, I felt this amazing connection to the Deaf and Hard of Hearing in the stories. I was amazed. I thought I was the only one, but I'm not. And I started chasing after Deaf culture. It became an idol (something I still struggle with), and I began figuring out my Deaf identity.

All of this took place very rapidly, especially in the eyes of my parents. They watched as I changed from struggling to hear and trying to pretend I was like everyone else, to accepting the norms of Deaf culture and telling them what it was really like for me. They watched as I chased after Deaf culture and they became afraid.

I was entering a world neither of them knew. I was entering a culture with norms that hearing culture doesn't accept. I was fighting to find an identity that was reshaping who they knew me to be. I was standing up for rights, demanding equal access for the first time, and they had no idea what to do. For the first time, I let no one call me broken. For the first time, I let everyone see the Deaf side of me, instead of pretending to be hearing. And much of this change took place in a matter of a few months.

And we fought. How we fought. They thought, in some ways, Deaf meant inferior. That a Deaf person couldn't have a high ranking job. They thought that I would have nothing in common with Deaf because I had learned so much from hearing culture. And they were scared of how rapidly I was changing.

To be fair, I don't change quickly as a general rule. I think and ponder for months, slowly deciding and weighing options. I often remember things from months ago and bring them up in conversation. I don't often change quickly. But when I saw Deaf culture, I did change very quickly. And this rapid change would scare any parent, but even more so with me entering a culture they virtually nothing about.

And I was scared, too. I was afraid, entering a world about which, I knew nothing, either. But I knew that I wanted a place where I wasn't excluded from conversation, where I didn't feel ashamed of  having to say "what?" over and over again. I wanted a world where I was normal and accepted, not that token friend people wanted to have to show that they weren't biased, or to feel like a novelty in a group of people. I was tired of sitting on the outskirts of conversation, being left out, and having to stare at my plate at big family dinners because I was missing much of what was going on. So my longing to not be left out overcame my fear of the unknown. My parents did not have that same desire to overcome their fears.

So how do I balance their need for assurance that I am still me, still their daughter, and that they will always have me, while still reaching out for my place in Deaf culture, where I'm not an outcast, or a novelty people bring up in conversation?  It is not easy. With at least three grandparents in the medical field, and other family members who were connected with the medical community in the past, we all grew up, me included, with the medical perspective that Deaf means broken, or inferior. We were all generally unconnected from the Deaf community until I entered ASL classes. This was, and still very much is, entirely new, uncharted territory for us, that no one else in my family has ever fully explored like I am doing now. It's new, it's scary, and it takes courage.  And some of my family will never even try to understand. But for me, I truly want my parents to understand, because they are the two people on earth who are closest to me. And to fix all the conflict, there is no simple, easy answer. It's a tough situation, where no one but GOD has all the answers. I certainly don't. 

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

HALLO PEOPLES

I am hard of hearing. Let that be said right off the bat. I'm profoundly deaf in one ear (90dbs.), and I'm probably losing more hearing in my other ear. Sorta off-kilter hearing. This blog is to record the oddities of hearing loss and deafness (two different things), and share useful facts and information about living in a VERY quiet world.

Hearing loss runs in my family, with early hearing loss affecting my mum and my mum's parents. And I, lil' Kiwi, was born off-kilter. Wooo! We didn't discover MY deafness until I was 9. Woooo... yeah.

Did you know that if you're deaf in one ear, you have no sound direction? So someone calls you from one direction, you'll probably look somewhere else. I've actually consistently answered the question of the wrong person when I was in a conversation with my hearing aids out. There's a reason why people like me in Marco Polo; I never catch anyone. Kinda had to give up on that.

P.S. Tomorrow how to find where your hearing levels fall on an audiogram, in case you can't read yours.