Something I feel the need to write

It’s been a journey for me and many have tirelessly worked with me. But let’s start from the beginning. I was born totally deaf and had never heard a single sound in my life. For those who have been with me along the way I learned of Cochlear implants in 2005. It was then I began my quest to hear in earnest.

I was just 21 years old but most doctors considered that too old to adjust. It wasn’t until 2011 when I found Dr. Loren Bartels of the Florida Cochlear Implant center. She was the first doctor willing to take a chance on me. As an adult and deaf since birth it would be an up hill battle. We both knew it and she saw I was determined.

In her words. “Rarely have I meet someone with the drive and determination of this patient.” I’d won one important battle and that was to find a doctor with the same faith in me that I had in myself.

In early 2012 I had my surgery. It was costly with a price tag of more then 20,000 dollars from my own pocket. Looking back it was worth every dime. From the moment the surgery was over I couldn’t wait to hear my first ever sound.

In July 2012 they first started turning on the sound. slowly I was introduced to simple sounds. It hurt like hell! So a warning to those considering it. If you’ve never heard a sound the first ones you hear may give you a headache. But with time and practice I learned to filter sounds and distinguish different sounds. In time and with great effort from my doctors, therapists and my own persistence I learned to separate important sounds from back ground sounds.

At first the buzzing of the lights bugged me, crickets were a huge distraction, and sounds were difficult to separate. But Dr Loren and her team worked with me day in and day out. See I was as much an experiment with them as anything. it is virtually unheard of for an adult born deaf to have this opportunity.

It was certainly a fight to find a doctor willing to help. The results for the risk simply weren’t worth it to most doctors. I asked Dr. Loren “Who gets to judge what is or is not worth it?” After her pause she said I should be the only one to judge that. That’s how my surgery got scheduled with one challenge to the right doctor.

I’ve written about many experiences from “1st Anniversary” where I heard my first human voice. A full year after the first time they turned my implants on. On that date I heard 4 little words “Mom I Love You”. I still cry today reading it. Even if it never got any better these 4 words alone would have been worth the price tag and the entire journey.

Of course I didn’t understand the words without reading his lips. But I heard him, I really heard him. This experience was magical and I began wondering what one voice can mean. His little voice meant more than life itself to me. Oh what one voice can do. What should my voice do now that I had one?

This experience inspired me and I wrote a song “What does one voice mean” just days later. When I told the doctor I wanted to sing this she was floored. It was certainly ballsy. I mean I’d never heard a sound for more than 25 years and suddenly I wanted to sing. She must have thought me crazy.

Not this doctor. Nope she went right to work helping me with my new dream.

The doctor said guitar would help me with pitch and tone. Something not being a natural hearer would certainly pose a challenge. During this journey I shared many posts like “colors” and “sound of silence“. I’ve shared some of my “early years” and what impact deafness had on it. I tackled the guitar with the same vigor and passion as I tackle everything.

I worked with an Awesome speech therapist Robin Best. She worked with me tirelessly to learn the words I needed so I could sing. I had a music couch Cano. It seemed we had a single mind and a single goal. I wanted to sing my song and I had less than six months to practice it. Well I “brought my voice to life” on Christmas eve at a talent show near my parents home. The same school where I attended and the look on the faces of those who loved me and those who remembered the little deaf girl. It was incredible.

It’s hard to believe that from my experience growing up deaf and becoming an adult that in six months I’d learn to sing. Imagine the faith these people had in me. None of them said hey you can’t do that. No they got in line and said we have work to do miss.

During the next two years I’d gotten many “questions about my implants” and have written about excitements like “Today something new” and “My continued journey into sound“. I’ve been open in sharing much with you my readers.

In May of 2014 I got the new hybrid implants and I was totally deaf for a time again. I wrote more about “noises in my head“. During the next few months I was totally deaf again and on June 12th 2014 it was all too much. I made a horrible mistake that day in trying to end my life. The worst was losing the gift I’d been given. In just a year I’d come to take for granted the sounds I now heard.

On June 20th they finally turned on my new implants and I’ll tell you it was like going from black and white TV to color TV. The difference in the quality of sound as well as quantity was night and day. It was incredible to say the least.

In April 2015 I discussed the vast improvements in my hearing in “My hearing, CI and where I am today“. Well it continues to get better, I continue to advance and my hearing has become so much sharper, so much more keen that I ever imagined. Now I know what I hear is really electronic noise and I am learning through music to match the pity and tone I hear. This is how I learn words. I hear them and then practice until I match that tone in my head.

That tone forever becomes that word.

Of course I continue to learn even today. I see a Dr Jana, Speech therapist Lori and my music teacher Tia. It’s been a road and a half. Today my voice is richer and more normal. Check this post “Hey there” if you want to hear the deaf girl sing another song for you.

Looking back and in my wildest dreams I’d never have imagined this world. I thought CI would help me hear a little, I was told don’t expect miracles and I had low expectations of the over all results. Today I sit blown away by those results and I’m amazed it continues to improve moment after moment, day after day. but it’s the little things that amaze me most. The sounds of my families voices, birds and the sounds the ocean makes.

Though I am still a deaf girl in a hearing world and I still spend 10-12 hours a day totally deaf. Today I couldn’t picture life any other way.

Thank you Dr. Loren Bartels for your faith in me. Thank you for the fight you faced with peers, insurance, and ever obstacle you had to cross.
Thank you Robin Best for you tireless efforts. The odds were long and you never quit on me.
Thank you Cano for your efforts as well. Teaching a deaf girl to play guitar must have sounded ridiculous and you never blinked at the challenges we faced together.
Thank you Dr Jana, Lori and Tia as well.

I know you all got paid for your time. But your faith in me, your persistence and your own hard work has lead us here today.

One final thank you, Thank you TJ for encouraging me to write and put it all out there. I never thought I was a good writer but you showed me the way. I am both blessed and grateful to know you and count you among my dearest friends.


For more on the deaf experience;
There are two views on deafness and deaf individuals

CI experience being born deaf

Early years in school

Learning to listen

CI technology

How I see my deafness

And a great movie about being deaf “sweet nothings in my ear

TJ was instrumental in encouraging me to write about these things. He is perhaps the sweetest, best friend I have and may ever have. /hugs