From the Ears of an Active Deaf Girl

Hearing loss is something that feels “normal” to me since I can’t remember a time that I could hear.  Learning of my hearing loss devastated my parents, but as a child, I was innocent and didn’t know any different.  It’s a challenge I live with daily and few truly know the walk I take in life.   To some, my life seems “happy.”  To my family it may seem frustrating.  To children it creates curiosity.  To the public eye it may seem like a disability.  To me…it’s a battle of highs and lows.  Quality of life is not tangible, is not on green paper, and is not a possession.  Nothing else matters when it comes to your quality of life.  For the first time, I’ve decided to share what the world sounds like from an active deaf girl…

Having approximately 50% hearing loss in one ear and 70% loss in the other labels me as “severe to profoundly” deaf.   Without my hearing aids, I basically hear muffles and with my hearing aids, I spend lots of extra time during my day comprehending what I’m hearing.  If you’re not sure of the difference on the various levels of hearing loss, listen to this fun Flinstones clip:

I was one of the first in our school district attending public school with hearing loss, and I’m blessed that I wasn’t made fun of in school and had lots of great teachers, friends, and amazing teammates.  Teammates who’d make me take out my hearing aids during a soccer game to show to the ref who just carded me for kicking the ball after his whistle.  In elementary and middle school, I wore huge behind-the-ear hearing aids with a circle loop receiver while the teacher wore a microphone hooked to a box clipped on their pants.  Teachers didn’t seem to complain about wearing it and the kids thought it was pretty cool.  My mom once told me a story about my first grade class.  The teacher told my mom she asked the students to make a Christmas wish list and what was on their list…you got it, hearing aids.  Many times the teachers would forget to turn off their microphone.  My classmates enjoyed eavesdropping on the conversations when the teacher walked a kid to the principle’s office.  I’d give a warning when the teacher was returning from the restroom or the office and we’d look like we never moved an inch!  I also got to hear the bathroom experiences, which I did not share.  If any of my old teachers are reading this, I’m sure they wouldn’t be surprised.

I have so many great stories and memories that I will be able to share for the rest of my life.  There was a time I forgot to wear my hearing aids to school and my mom had to bring them to me in kindergarten. I felt like a kid who forgot to put on their shoes! At times the kids in class would challenge me in lip reading (my husband loves it when I watch ballgames with him so I can tell him what the coaches/refs/players said).  And, there was a time my cheerleading coach chased my hearing aids flying down the basketball court during a tumbling stunt at a game.  I’m still VERY appreciative of my school district, my teachers, my speech therapists, my friends, classmates, and teammates for making the experience a little less burdening and proving to the doctors that I didn’t need to be tucked away at the school for the deaf my entire life.  Sure my parents and I had to prove them wrong the hard way.  That is, not only did I have to pass each grade level and the public school or state testing, but we had to drive 2 hours from home every year to pass long days of testing at the school for the deaf.  My grades, active lifestyle, and determination changed the doctors’ hearts…nothing is impossible for kids with disabilities!  But, as I grow older into an adult and navigate the real world, the experience becomes stressful for me especially as technology changes and I transition into new aids every few years.  The environments become chaotic creating a whirlwind of a headache.  It takes several fittings for me to even tolerate the world around me.

Probably the coolest ones I've ever owned!
I have never been ashamed of having hearing loss.  In fact, I go after the “cool” aids.  I want kids to see that hearing aids are fascinating.  It’s a part of who I am, but like anyone else, I want to be independent.  I don't want to rely on my family, my husband or my friends.  I don’t want to feel burdensome.  It can be quite a lonely place when you don’t want to ask for help, you don't want people to feel sorry, you don’t want others to adjust or change their ways, but you can’t really seem to stay caught up with others around you.  I’m mainly speaking of conversations.  I love entertainment – whether it’s dinner functions with groups/couples, movie theatres, group events or talking on the phone.  I get lost in translation.  Surprisingly it’s becoming more difficult as technology changes.  I always say, “I just want NORMAL ears…not ears that have special features!”

On my 2014 wishlist is wishing that someone could design hearing aids with Bluetooth (without purchasing an extra $200 receiver piece to wear around your neck – I mean what’s the point of Bluetooth!)?  Okay, that’s a special feature, but I wish that hearing aids could economically keep up with all the other ever-changing technological advances without a hassle or screaming feedback that I get on headphones, cell phones, etc.  Secondly, these newer aids are amazing and pick up everything BUT, I’m pretty sure normal ears don’t sound mechanical nor do they pick up persons sighing, whispering, or munching on chips so loudly.  My husband sounds like Cookie Monster!  Conversations sound like people speaking through a microphone.  Oh here’s one, how about using a phone on the top of your ear lobe playing hide-and-go-seek with your microphone, I guess the engineers thought that would be fun for the public eye to watch (see photo below)?  And, what do I look like when I try to find the sweet spot so I can hear the other person.  I’m apologizing to my family and friends in advanced for not talking much on the phone.  If I’m home alone or in a private room, I’ll put you on speaker but until then, sorry, not answering.  I’ll just continue to be like the annoying, texting teenager.
The process of finding the sweet spot on my new aids
using an iPhone 5!
Perhaps these are the reasons why I LOVE the great adventures and outdoors: swimming freely like a fish in the big underwater world with the peaceful swishing of water rolling past every stroke, running without anything in my ears (not even music), or biking with the breeze blowing and airing out my ears.  There is no greater place I love to be than God’s creation.  There is no stress, no pressure, no focusing on sounds or comprehending conversations, and there is no disability.  That’s my peaceful escape; however, I’m still grateful for my hearing aids for the rest of my world.  With or without hearing aids, I continue to learn God’s lesson that NOTHING is impossible with Him.

Special Feature: An interview from my amazing mother…

As a mother just finding out your daughter had significant hearing loss...what were your first thoughts?
Scared.  Cried.  We didn’t know what to expect, but were terribly afraid how this would affect your future.

How did you cope?  Prayer.  God gave us strength and directions as we dealt with what to do.

Did you know anyone at the time who had hearing loss or a child with hearing loss? 
No

What do you want other mothers to hear from you? 
That hearing loss or any disability can actually be a strength to your child.   You can’t change the situation, but you can certainly help your child deal with it which ultimately changes the outcome.

Take a look at a great video of a song that goes through different levels of hearing from normal to profound, listen through the ears of those who may live with various levels of hearing loss by clicking here: Hearing Loss Simulation -  Hear the World.  Original video with out the simulation is below.


Please share with those around you for they may be experiencing trials of frustration or just finding out their child has hearing loss.  There is a bright future ahead of them.

Quote of the day:  Optimism is the faith that leads to achievement.  Nothing can be done without hope and confidence. ~ Helen Keller


Bible verse of the day:  Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance.  Perseverance must finish its work so that you may be mature and complete, not lacking anything.   ~ James 1:2-4

Comments

  1. Tiff, we were all so blessed to grow up with you. You taught us all that a disability doesn't have to be disabling. Some people pass through life and leave very little evidence of their presence. You, my friend, are not one of those people.

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    Replies
    1. You, my dear niece, have always been an inspiration! Thank you for sharing from the heart your incredible story and life. Love you, Aunt Cookie

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  2. You are a wonderful, inspiring young woman who I really admire. I've watched you your entire life and have always been amazed at your strength. You never gave up, and you have a wonderful family who have always been there for you. I have a friend who has struggled since a young child with hearing loss also from meningitis, I want to share this blog with him. You are truly inspiring! God Bless.

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