Monday, March 2, 2009

My Story

Forty-eight hours from now, I will have been implanted with the Nucleus Freedom Cochlear Implant. It's surreal to me. It's taken me three years to go through the approval process, and once it was given, everything seems to be snowballing rapidly.

I've had a severe to profound hearing loss for most of my life. My hearing loss was noticed by my family when I was three after I had been through a particularly rough winter with childhood illnesses and frequent high fevers. My mother also had rubella while she was pregnant with me. My hearing loss has always been defined as "unknown" since there have been different possible factors that could have played a role.

I was fitted with my first hearing aids when I was 5, and I still have a vague memory of hearing sounds and speech well right off the bat. I was so excited! However, the summer before I was due to start kindergarten my mom was told I'd have to go to a deaf school which would involve me leaving home at five! She didn't find that option acceptable for us and worked very hard with me at home everyday that summer, in addition to the time I spent in speech therapy each week at the Chattanooga Speech and Hearing Center, to prove I was ready for public school admission. In the fall when I was tested again my IQ jumped up 20 points, (so much for the concept of an IQ test not being something that someone can study for, right?!) and I had no problem being accepted in the public school system where I don't remember being much different than anyone else in the earlier years.

As I got older and my hearing loss became progressively worse, I started struggling to understand what was going on in the classroom. However, I rarely struggled with language or reading skills. Those were my forte thanks to the many hours and days my mother devoted working with me one on one and reading stories to me. She was an English teacher who often took those with challenges under her wing. I still get emails from her students sharing their memories 22 years after she passed away, and I'm sure I was the one most blessed by the difference she made in my life.

Junior high was a nightmare for me. I could not fit in to save my life, but my hearing loss had so much to do with that. I was so embarrassed by it. One year I was the wrestling team manager, and I refused to even wear my glasses in front of the guys. I was Helen Keller with a score board, and Coach McClure was kind enough to ignore the fact that my score was never remotely close to what the other manager would have on his board. Coach McClure is my cousins' uncle and my brother's former coach, so I think he was just letting me have my fun, but that was the only year I was the manager. Come to think of it, he even gave me a letter for managing I know I didn't deserve, but he didn't ask me to come back, and I didn't even try to suggest it.

I didn't really know anyone else like me, and kids can just be tough when someone is different. The harder I tried to hide my hearing loss, the more gawky and out of place I'd be. My parents were concerned and thought I might benefit from going to a deaf summer camp. I went very reluctantly, but I thrived that first year. I started learning sign language. Boys liked me, a lot of boys! The attention totally went to my head. I excelled at sports at camp and brought home quite a few first place blue ribbons from different team competitions. I made a girl friend was new to the scene herself (raised oral but was also beginning to learn sign language through immersion at camp.) I went to this summer camp for several summers, and it made a huge difference in my self confidence which I sorely needed.

When I started high school, I bloomed. I still hid my hearing loss, but it was different. I think having my mom around the corner did wonders for me. She was a popular, well-loved teacher, so I had no shame riding her coat tails. My brother graduated the year before I started high school, and there was no shame in my game in riding the crest of his success as an athlete and well liked guy either.

I eventually felt like my own person, but darned if I still couldn't talk about my hearing loss. I ran track with my hair down in hot weather so as not to show my hearing aids. I even had a boyfriend my junior year that would call me on the phone at home. Every time I couldn't understand him, I changed the subject, which was like every other sentence. Our conversationos were exhausting. He was extremely polite and didn't call me on my insanity. I don't think we ever discussed my hearing loss that spring we dated. The most annoying part is that I had volume control on the phone, and my mother (who was his teacher) would feel free to participate in our calls from across the kitchen while she made dinner.

My mother died when I was a senior in high school. That same year my dad showed me a story in the newspaper about a girl who won Miss Deaf Tennessee. That just blew my mind that being hearing impaired could be an awesome thing. I think that article had a lot to do with my definite decision to teach deaf kids one day. It also made me start thinking beyond losing my mom and actually think about the future. It was also the beginning for me to let my guard down about my hearing loss because what's more glamorous than a shiny tiara, right??? That girl that won the pageant? She's one of my closest friends today and has been for MANY years. (Hi Crissie!)

My audiologists pretty much promised me as a kid that I wouldn't become deaf. I grew up thinking of myself as hearing impaired/hard of hearing, until one day in college I took a closer look at my audiogram and asked my audiologist what I already knew. I asked if I had become deaf since my loss was at 90 decibels at this point. I was a special education major, and I had just read something not long before in one of my textbooks about deafness being a loss of 90 decibels and higher. He said yes, but oddly I was relieved that being deaf wasn't the sheer silence or stigma I was afraid it would be, and I was relieved that I didn't have to worry about becoming deaf anymore because I'd finally arrived, and somehow it was kind of cooler to say I was deaf than hard-of-hearing.

I could still use my hearing aids at the time to talk on the phone (the poor people on the other end that had to speak slowly and repeat themselves often...) I had some basic signing skills I'd learned from deaf friends and college classes, but I didn't have an interpreter for classes. I rarely paid attention in class and was bored silly most of the time. I'd study at the last minute absorbing everything in the textbooks and hoping the professors didn't add anything that wasn't in there. Once I had to explain how I'd written a paper to a professor because he didn't teach what I'd used and I went way beyond what was required (thanks to not being able to lipread a man with a beard and no effort on my part to clarify the assignment in the first place), and he was sure I'd cheated. I didn't know whether to be flattered or ticked off... I was a little of both, and I sat down and pointed out all my references from the text I'd used. He was impressed, and I felt justified but annoyed.

Surprisingly, I felt truly liberated once I knew I was technically classified as "deaf". Perhaps part of that was the freedom of being in college as well. I loved my ASL classes, and I felt pretty special being the only one in the class besides the teacher who was deaf. For the first time I had a lot to say, and I didn't hold back. I embraced my deafness. I became involved in the deaf community, made new friends, competed in local deaf pageants, and went to community deaf shin-digs and just had fun getting to know a new world.

I represented Tennessee at The Miss Deaf America Pageant. That was extremely tough though. I struggled so much with understanding the language at the time (receptive and expressive) that I just didn't stand a chance at the national level in the interview portion. One of the on stage questions was something like "...and how would you feel if a doctor said he could cure your deafness?" which was a reference to cochlear implants. The PC answer was of course "..there's nothing wrong with me... I don't need to be healed... Deaf pride!" I remember thinking what a relief it was that I didn't make the top ten and have to answer that because I wasn't very PC. I probably would've been lost anyway and said...."my favorite childhood pet was a shaggy dog I named Benji..."

I graduated in special education and became a deaf education teacher. My signing skills have improved tremendously since my deaf pageant days, although I am not so presumptuous to consider myself overly fluent. I'm still learning. However, I can't make a phone call without my video phone where an interpreter is on the screen signing what the other person is saying. It has changed my life though, and I love using the phone again. I can also call my two favorite deaf girlfriends, Crissie and Dannette, and talk directly to them. They get to see my son, our cats, and my husband will jump in once and a while to say hi. I also get to say hi to their husbands and my son loves seeing their pets. Dannette even showed me the color they were painting their walls the other day. I can't imagine being able to use a phone now without captions or an interpreter available. I have no idea how much a cochlear implant might improve my auditory skills on the phone.

Three years ago, I applied to get a cochlear implant. While waiting for approval, I became pregnant, had Aidan, and now he is almost two! I've wrestled my feelings on the subject for a long time. The deaf community used to take a firm stance against cochlear implants. While they are not embracing the idea now, they are much more open-minded on the issue than they once were. I was once on board with their viewpoint thinking an implant wasn't for me, but as I got older I realized I really wanted to hear as much as I can. My son is talking, and I don't want to miss a word.

So, this is the beginning. On Wednesday I will be implanted. My hair will be slightly shaved. All the residual hearing in my right ear will be destroyed (not that there's much left, but there is a mourning process in losing it.) I will be activated a month after surgery. I'm excited and anxious at the same time, but I feel blessed to be on this journey.


  1. Michelle! Congratulations! I can't believe this day has come :) Just an FYI I have been volunteering at the Deaf Culture Center here, decided to become a high school teacher, and my long term goal is to bring ASL to a school district as a foreign language! I am so happy for your successful surgery and will be watching for more blogs :) Thanks for sending this to me!

  2. Thanks, Katie! I'm really excited for you too. Keep me posted on what's new with you, and give Aianna a big hug for me!

  3. Oh wow, Mich! I'm so amazed that the time is finally here and you have your implant now! I can't wait to read about when they turn it on and what that is like for you.
    I'll be reading!