08 August 2012

Part of Who I Am: An Introduction to Growing Up Hearing Impaired

This story is only part of my story. It is only a part of who I am. I do not define myself by this story. But I do know that understanding this story goes a long way towards understanding me on a personal level. And I gladly share this story, but never have I shared it all at once before.

It's hard to write down your story. Even just a part of it. So it's taken me quite a while to find the words to share without it becoming an overwhelmingly long story. Even edited down, even when I know I'll share more snapshot stories later on, it's still quite long. Just the same, this is just an introduction. There will be more stories, some that share more details, others that share a little more insight, to come.

Because it's such a long introduction, you can read more following the jump.

I was born in a different era.

Back then, it wasn't routine to test newborn's vision and hearing. Since I was perfectly healthy with no obvious flaws, I was sent home to a happy childhood.

But a mother's intuition is often correct. Mama Mac just knew, the way mothers often do, that something was wrong with her perfect little baby.

Shortly after my first birthday, while I was sitting and playing with my back to Mama Mac, she crept up behind me and made as much noise as she could. Clapping her hands, calling my name, banging pots and pans. 

Still I sat there playing contently while Mama Mac's heart broke. 

The first doctor Mama Mac took me to told her that the only choice was to put me on a medication that could possibly give me my hearing but take away my immune system, leaving me extremely vulnerable to every illness out there. There were no guarantees though that the medication would improve my hearing. And the doctor went on to tell them that if my parents didn't choose that medication, I'd never have a normal life. 

My parents found another doctor instead. 

By the time I was sixteen months old, I had been formally diagnosed with a profound hearing loss, potty-trained, and sent off to an intensive hearing impaired preschool.

The preschool was designed for hearing impaired students and students whose parents were hearing impaired. The goal was to catch us up on all the sounds and speech we'd missed during those early years so that we were best equipped with all the tools we needed to be fully functional members of the hearing world. We were in class full days Mondays through Thursdays with half days on Fridays. Kindergarten with its half-days was a break for me. 

I don't remember too much about those early days in preschool aside from the long, locker-lined hallways and the fact that my locker and cubby were always marked with a green square (since we were too young to read our names). 

But I know that was when my mom quit her career to become a full-time stay at home mom so she could spend all her time with me, practicing my speech and my sound recognition. She was so patient and dedicated that even now, I don't have the usual "marble mouth" sounding speech that is common to deaf and hearing impaired people. Oftentimes, my speech is complimented when people find out I'm hearing impaired. I feel I can say without bragging that it is quite good for someone whose hearing was so impaired, even if I get frustrated sometimes by my inability to say "cheese" clearly.

Before I go any further, I want to make it absolutely clear, I had a happy childhood. It wasn't until I was much older that I realized my childhood wasn't "normal." It wasn't always easy, but for the most part, I still had a happy childhood. What made my hearing loss, and my childhood, especially unique is that I had a fluctuating hearing loss.

A fluctuating hearing loss meant that at times, my hearing was better or worse. I was still hearing impaired even when my hearing was "good." When my hearing was "bad," I basically became temporarily deaf. My hearing aid was useless then.

What made the fluctuations so difficult and disruptive is that we never knew when I was going to lose my hearing or for how long I'd be temporarily deaf. I could lose my hearing for a few days, a few weeks, or even months at a time. There was no rhyme or reason to when I'd lose my hearing. Every morning, I'd wake up and it would be a guessing game as to whether I'd be able to hear once I put my hearing aid on.

On the days I could hear, great. Life was normal. I teased my brothers, I played with friends, I did my homework. Just like any other kid.

On the days I couldn't hear, I usually had a suspicion that I wouldn't be able to hear before I even put in my hearing aid. My bad days were usually accompanied by dizziness and a louder than normal ringing in my ears. (The roar of cicadas at their fever pitch is perhaps one of the best descriptions I can offer for what the ringing sounds like on a mild day). But still I'd check. Hope springs eternal.

And if I couldn't hear, we'd try changing the hearing aid batteries just in case.

Then there were tears. Mine, my parents', my grandparents'. I'd argue with my parents that I shouldn't have to go to school that day. It was extremely difficult to follow what was going on in the classroom on days I couldn't hear. My parents, however, would ignore me and send me onto school anyway.

Most teachers did their best to accommodate my temporary deafness. Some weren't so good about adjusting to having a student in the classroom who could hear one day and not the next. Good friends would write me notes or make sure I could read their lips. Other kids, well, they weren't really my friends after all.

Beyond the predictable social and emotional upheaval of losing my hearing, there were also some accompanying health issues that came along with it. There were countless doctor's appointments and I'm not sure I can list all the surgeries I've had anymore.

I remember in eighth grade English, my teacher, who looked like he stepped out of the Rat Pack, had us write about our biggest fears. I wrote about losing my hearing. I didn't want to become permanently deaf. I couldn't put it into words very well, but I was afraid of losing life as I knew it and of being cut off from the world.

My teacher....brilliant man.....left me dumbfounded when his only written response to my entry was, "maybe it wouldn't be so bad after all."

And less than a year later, I did lose all my hearing permanently.

Now, with the wisdom of age and the gift of time, I can very easily, very happily say that my teacher was right: losing my hearing wasn't the worst thing to happen. In the end, my life did change, but for the better.

I'll tell more about the actual permanent hearing loss another time. (It's a long story in of itself.)

The last time I had my hearing checked (last fall), I tested at normal hearing levels. I hear amazingly well for someone who is legally deaf when I have my cochlear implant on. Without it on, I hear absolutely nothing. There's still some challenges and frustrations that come with not being able to hear, but compared to the uncertainty and inconsistency of my childhood hearing issues, those frustrations really don't seem like such a big deal.

The truth of it is, for as hard as my childhood was at times, it really did make me who I am today. And because I love who I am, I wouldn't have traded those experiences for anything.

More than that, by sharing this story (and more stories in the future), I hope that it helps someone else, somehow. Maybe to feel less alone. Or to not worry so much about not being "normal." Or to remember, even that which you fear can make your life better than you planned. So much better. 


Vanessa said...

Thanks for sharing your Story Katie. Very touching and I love the accompanying photos from your childhood. Your mom sounds like an amazing woman as do you!

kat {pipkin hollow} said...

Katie, I love that you are putting your story out there ... a story of love, strength, courage ... remarkable ladies, you and your mom ...

KT Mac said...

Vanessa and Kat...thank you so much for your support. And yes! Mama Mac is an amazing woman! Certainly couldn't have done it without her.

Daizyheadmaisie said...

Wow, thank you for sharing your story. I was very touched by your journey. It is clear that your mom gave you such a strong foundation of love and support.

Mb said...

I wish I hadn't read this at work. I'm fighting back tears. I'm so effing proud of you. Proud to call you my friend. Proud that you shared this story. Proud that in the future, if I am blessed with children, they will inevitably see you as a role model.

Debbie said...

Thank you for being so brave and honest. My husband started to go deaf in his late twenties, and was profoundly deaf within a few years. He had a cochlear implant fitted four years ago at the age of 44 and it has made a lot of difference to him.

KT Mac said...

Daizy - thank you! And yes, a very strong foundation indeed!

Mb - I love you. I'm so thankful you're my friend!

Debbie - oh wow. I can't imagine handling this kind of hearing loss as an adult...how did he handle it? How did his employers handle it? And yes! Yay for cochlear implants! Has it improved your life too now that he can hear again?

Karen C said...

Oh KtMac! Such a beautiful and powerful post from a beautiful and strong woman. Blogging from the Heart was a great course, but I still think one of the best things from that experience was gaining you as a friend. Hugs!

KT Mac said...

Karen - I wholeheartedly agree! Cheers for new friends!

Kb_Mal said...

Fabulous and brave post - can't wait to see you in a few weeks!

p.s. I had my inner ear removed and operated on when I was 7 - still have pretty rough hearing in that area but I think it gives me character :)

KT Mac said...

Aww, thanks Kb!! I'm super excited to see you soon too! And gosh, the more I share, the more people I find out there who have overcome some hearing issue....we're definitely not alone!

Chi Chi said...

I think I'm late to this party, but saw the link on Mb's page and had to come check it out. Your story is so inspiring and I feel privileged to be able to hear it. Can't wait to see you in NO!! It's been WAAAAY too long :)