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.

GOD is Gracious to me

I was just thinking tonight how gracious GOD has been to me  as I seem to be slowly losing my hearing on my one good side. HE has been so kind to me in my deafness.

Instead of letting me go suddenly deaf, hearing nothing in an instant, HE has slowly let me grow accustomed to my hearing loss. My hearing is fading so slowly that we can only see it over the space of 6 years. What a gracious thing that is from GOD!

Think of it. What if I'd gone from being fully hearing in one ear, to being completely deaf in that ear in an instant? Can you imagine the shock? The fear? It was scary enough realizing I was losing my hearing slowly in my one hearing ear, can you imagine the terror if I suddenly had no communication with my family other than writing? Some people DO go deaf that quickly, from sickness or a sudden blow to the head. That could have been me!

Instead, GOD has been so good to me! HE's letting this happen slowly. I have time to adjust, time to get comfortable for it. I have time to prepare for increasing hearing loss. I have had time to learn ASL so that I can communicate when I can't hear what people are saying. I have had time to tell my family what is going on and to discuss plans for how to communicate with me in the future! I have had time to start making ties to the Deaf community and gain support in that community! There have been so many things I am able to do in this time GOD is giving me!

GOD is so gracious! How many people get this chance? And how many get the chance to ease into it, so that the changes are gradual and easier to get used to?  It's a blessing from GOD!

Isle of hope, Isle of ears...

So, I mishear songs. A LOT! And sometimes, it's hilarious. Though not so much when I mishear hymns. (I regularly accidentally destroy hymns for my mother by saying the misheard words, which makes her laugh.)

However, there was one song that I really liked growing up that the second verse made ABSOLUTELY NO SENSE to me; and it's from "Isle of Hope, Isle of Tears."

Here are the PROPER lyrics;

In a little bag she carried all her past and history
And her dreams for the future in the land of liberty
and courage is the passport
When your old world disappears
But there's no future in the past
When you're 15 years.

~~~~~~~~~~~~~~~~~~~~~~~~~~~

Kinda sad, I know. But lovely song. I tried finding a good version with lyrics posted on youtube, but no luck. Anyhow, my mishearing.

My mistake was in the first line, "In a little bag she carried all her past and history..." Now, see, I heard it as, "In her little pachydermy she carried all her past and history..." And I always wondered why she had a tiny elephant that held all her things. Was it a tiny elephant purse? Or was it a mini elephant that held her things in it's trunk? It never made sense to me.

What funny lyrics have you misheard?

Never hearing silence

Most people think that Deafness means silence. No sound whatsoever. And that going deaf (physical deafness) means that sound gradually fades out, and that is all there is to it. Most people never talk about tinnitus.

As you know, I was born deaf on one side, and now have lost some hearing on my right side. What I expected was that the more deaf I became, the quieter my world would be. And most of the time that holds true.

However, what is most surprising in all that, is that I have never actually heard complete silence. To me, silence has been everything going quiet with a small, high pitched ringing in the background. My world has gotten quieter, but I still have sound in it, but it's not externally generated. My own ears and nerves are generating sound and it's kind of weird and a bit annoying.

Oh, and by the way, tinnitus isn't always high pitched ringing. Sometimes it is, yes. But sometimes it's a low pitched grinding noise which sounds like you have a base chord on an electric guitar being strummed while you're sitting next to a rock grinding machine. Quiet unpleasant, actually.

Oh, and just because I'm losing some hearing doesn't mean that sound doesn't hurt. Sometimes it means that sound hurts more. Sometimes, the noises that break through the silence hurt because you're not used to those sounds. OR it's because of a phenomenon called "recruitment," which is what happens when one range of sound dies out, and the remaining nerves and cillia from that range are "recruited" to another range that is still working, which makes anything in that range seem louder.

Being Deaf isn't the problem. The problem is the process of your body getting used the the quiet, or how your hearing changes unexpectedly before you go fully deaf. Like having tinnitus or recruitment in different hearing ranges.

Thankfully, I grew up with this, so it doesn't bother me too much. But now I wonder....what does silence sound like?

Considering learning German

...I'm considering something completely insane. Something absolutely illogical... I'm half Deaf with slow hearing loss, and I am actually considering trying to learn spoken German. As if spoken English wasn't hard enough...I'm thinking about trying to learn another spoken language. To be honest, I have good reason, since I know so many people who speak German, and we have close connections with a church in Germany. What I'm really wanting to learn German Sign language, but I don't know anyone who knows it! So I'm actually tempted to go for spoken German. I must be NUTS. But imagine being able to say I'm half Deaf, and am losing my hearing, but I still know three different languages, two of which are spoken. Wouldn't that be AWESOME??! Sort of like, "Can't stop me now! I might be Deaf but I can still speak more languages than most Americans!" But then again, it's completely illogical. I'm half Deaf! It's going to be a royal pain! And....I'm arguing with myself right now! I need someone to be a tie breaker! What do I dooooo??

Fake British Accents and stereotypical boxes

So, have I ever told you that when I'm nervous in a conversation with non-signing strangers, especially when I don't have my hearing aids in, I sometimes I get a random accent? I sometimes sound like I have a fake British accent. Why do I do this? Because I am afraid that, because I can't always hear how I'm pronouncing things, I'm going to pronounce something wrong and they'll make fun of me. So to compensate for this, I OVER enunciate my words, which then sounds a bit British. I also use bigger and more elaborate words, as well.

See, this is what happens when you're half Deaf and you can't just say that you're Deaf, because people will call you a liar, and you can't call yourself hearing because you genuinely can't hear people in many circumstances. You can't be yourself fully, because people try to make you fit into this little box in their heads. "Deaf means you can't hear anything." "Hearing means you're able to hear everything." And I don't accept hard of hearing because it makes me feel like I'm trying really hard to reach the mark of hearing, but I'm failing; which is not the case.

To be honest, I'm just me. I love being half Deaf. It's a quieter world, and I like it. It's part of what makes me me. And I like being half hearing. It connects me to my hearing family, part of which, due to chronic diseases, struggles to learn sign language to communicate with me. And I like music. And I like signing. I like my times of quiet, and sometimes I just like to crank the music up and be loud.

The biggest "problem" with being half Deaf is that people try to put you in a category and then try to define you by that category. And if you stray from the norms of that category, they get mad at you and call you a liar for not fitting into their little box. What if THERE IS NO BOX FOR ME? What if, in order to understand me, you actually have to get to know me?

What if I'm like you? What if I don't want to be defined by your stereotypes any more than you want to be defined by mine? I'm a person, not a label. My life is complex. I will never be able to fit into a box. And honestly, you want to know something? Most people won't fit into a box. Most people are bigger than any box you can come up with.