Thursday, September 3, 2015

I'm a walking grenade, Gus... and one day I'm going to explode.

And it's going to obliterate everything in it's path.

Me too, Hazel Grace. Me too.

I had to tell you. I just had to. I don't care if it reveals who I am to some, because it might. But this is something that is so ingrained in me, a really high-up 'I am'...



I am going deaf.

 
I'm in the canyon. I sit by a roaring fire, surrounded by my family, my parents, my siblings. I hear Dad laughing loudly like he always does and my older brothers singing a campfire song. The fire cracks loudly, sending a shower of sparks into the twinkling night sky.
I am going to be deaf
I'm walking to the bus on my first day of second grade. My new shoes are squeaking and my backpack is full of fun pencils and new notebooks. I make an effort to step on every single leaf because I love the crunching sensation and relish the noise. My friend giggles at my silliness.
I will be deaf
I'm in the car on the way home from a date. It has been pouring all day long, and my arms and hands ache from my first rock climbing experience. He is gushing about how cool some of those precarious leaps to far-away hand holds were. I laugh as he tries to sing along to Adam Levine. The warm feeling of friendship (and more?) fills the car and I can hear every raindrop on the roof.
I am going to be deaf
Fast forward ten years. A doctor is screening the progress of the little one growing within me. I feel a kick and my eyes meet my husband's. He is almost to the point of tears. The doctor smiles up at us, and says "Listen!" It's quiet, but the soft, steady thrumming tells us that our child is alive. That our child will be in my arms soon. Ours.
I am going deaf
When he called me by name and asked me on a date. When I'm called to the stand in sacrament meeting to accept my young women's medallion. When my mom yells my name after I get home from school and asks me how school was. When I hear my name and I walk to accept my diploma. When I hear my soulmate ask for my hand, and see the tears in his eyes when I say yes. When my own children yell for me from the next room over, tears streaming down their fat little cheeks. When my daughter calls me from across the country to tell me she's engaged. When I hear my own heart monitor and grasp every word my children say to me, just before I depart.

But I'm so afraid.

What if I won't be able to hear any of it?


I have never passed a hearing test.
I was born with Brachio-oto-renal syndrome, which is an extremely recessive genetic birth defect that causes, among other things, hearing loss.
In second grade, I had to carry around a special speaker with me while my teacher spoke into a microphone. I was teased for carrying the 'stupid box' around because I couldn't hear.
In sixth grade, I got my first pair of hearing aids. I had a really hard time adjusting to how loud everything was, and kind of made a way to big deal of it. My whole class knew they had to be quiet in class, or I'd go home with a huge headache. One kid in the class says my ears were so bad because I was an 'old lady.' (And this is risky because some of you were in that class. Yep. It's me. But it's something I HAD to write about.)
I got a new pair of hearing aids two years ago. But I never wear them. I hate the attention it gives me. I hate attention. (Then why do I crave it?) A test revealed that my hearing had taken another dive off the deep end. We don't know how long I'll be able to hear anymore, and there's not enough information on the defect to give me an estimate. It could be in the next few months or the next few years or never or tomorrow. I could just wake up deaf tomorrow morning. I've heard a story of a girl about my age with progressive hearing loss, like me. She went swimming one day with her friends. She jumped in the water and all the sudden, all her hearing was gone. In the blink of an eye, she was deaf.
And it terrifies me so much that this time next year, I could be deaf. I wouldn't be able to hear my name at graduation. I would need an interpreter to follow me to all my classes. Guys won't go on dates with me because they don't know ASL. Or because I'm the freaky deaf girl that everyone's afraid to talk to.  (right, like they totally go on dates with me right now)

I wouldn't be able to sing anymore.
Music completes my life. No, music IS my life. Music is my soul, my coping mechanism. It is how I express myself. It's one of the few talents I feel comfortable sharing with others. I need to be able to sing.


What if no one wants to marry me because of it.
Because my children have a 50% chance of going through life with this too.

Guys, I'm so scared. If this is His plan for me, so be it.

But I don't want it to be.
I don't know if I would be able to deal with it.

8 comments:

  1. This is raw. This is terrifying and honest. Well done.

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  2. You express your thoughts so adequately, and this literally moved me to tears. Your writing forces me to relive those moments with you, and it is very beautifully done, although heart wrenching to think about.

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  3. This moved me. Reading through this i was nearly brought to tears. But then the paragraph about losing the music, that is what moved me. Because like you, music is my life. And the idea of losing that is something that I never want to have to face. You are so strong.

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  4. This moved me. Reading through this i was nearly brought to tears. But then the paragraph about losing the music, that is what moved me. Because like you, music is my life. And the idea of losing that is something that I never want to have to face. You are so strong.

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  5. This moved me. Reading through this i was nearly brought to tears. But then the paragraph about losing the music, that is what moved me. Because like you, music is my life. And the idea of losing that is something that I never want to have to face. You are so strong.

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  6. This was so beautiful! And the fact that you were willing to share it is what makes that more amazing. Love this and love your blog! You are incredibly strong and talented!

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  7. You have to be brave to share something so deep and find a way to help others catch a glimpse of what you're feeling. This was very powerful.

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