Gene Scene: From Silence to A Noisy World

A few months ago I was asked to write a short article for Sarah Lawrence College’s Gene Scene Newsletter. I wrote it two months after my CI was activated and found it very difficult to fit everything into a page and half!

I wonder how different it would be if I rewrote now at almost 5 months post-activation. Anyways, here it is.

From Silence to A Noisy World

I’m listening to my iPod while I type this so I won’t smash the noisy laptop fan into a zillion pieces. I’m also wondering why the refrigerator must hum. I cannot get over how noisy clothes are when walking. I smile to myself every time I listen to myself walking because I cannot get over how different it sounds with different shoes on different surfaces. I love the sound of water pouring into a glass full of ice. I’m not sure I like the sound of my voice. I find it distracting when I’m trying to work on something and people are talking down the hallway. It surprises me every time I hear someone blow their nose. I jump whenever a baby screams. I find the sound of rain soothing. I like guessing which cycle the washer is on from the next room over.

Oh yes, I should mention I’m deaf (props to Connexin 26).

I made the difficult decision to receive a cochlear implant (CI), which is somewhat controversial within the deaf community. Each CI user has their own unique experience because we all have different backgrounds and types of hearing loss. I fall into the category of those who may not benefit as much from a CI as others. It will be at least a year or two before I have a good idea of how much a CI will benefit me.

I started the CI evaluation process in January and had surgery in March. During the whole process, I could not help but wonder why I was I willing to take surgery-related risks for an elective surgery when I was already healthy and happy. Some CI surgery risks include taste change, facial paralysis, meningitis, vertigo, device failure, and balance problems. On top of all the risks, I knew there would be a good chance I would lose all of my residual hearing which meant I would never be able to wear hearing aids in the implanted ear. I spent years learning how to identify environmental sounds (e.g. doorbell, phone ringing, etc.) with my aids. Why was I about to undo years of work and training all for something that may not benefit me? I still cannot fully explain why, but knew this was something I had to do for myself.

Let’s fast forward to surgery day. As I was getting ready to be wheeled into the surgery room, I could not help but think I must be crazy to let someone I barely know make a tiny well into my skull bone and attach a foreign object to that bone. I was letting this person drill a small hole into my mastoid bone and cochlea. Thankfully, surgery went well with no complications and I was sent home with painkillers the same day. Little did I know that the surgery itself would be the easiest part of this journey.

Fast forward two and half weeks after surgery to activation day. I received the external processor which processes sounds and transmits sounds to the implant. It was also the first time I heard with the CI. The experience was far from a pleasant experience. I thought I was going to pass out and I felt nauseous the first few minutes I heard with the CI. It was just such a shock to my body and my poor brain, which now had to adapt to hearing.

The first two weeks after activation day were awful. I should explain that I have always had a tiny amount of residual hearing in the low frequency range but none whatsoever in the high frequency range. I had never heard high frequency sounds until activation day. All I could hear was this constant high pitched sound that made me want to take the external processor off and throw it through the window and then run over it with a semi truck. I referred to the CI as my personal torture device those first two weeks. I went from being able to easily identify environmental sounds (with aids) to not being able to tell the difference between someone talking and a train. Everything sounded exactly the same those first few weeks. It takes lots of time for the brain to learn how to adapt to hearing. The first month was rough and overwhelming, but in the long run, I am glad I stuck with it.

A few weeks after activation day, I had my first sound booth test done with the CI. My residual hearing audiogram shows I have bilateral profound hearing loss and my hearing aid audiogram was similar to someone who has moderate hearing loss. My CI audiogram almost falls into the “normal” hearing category. This does not mean I can pick sounds out, process sounds, and identify sounds like a hearing person can. It means I can hear most things at almost the same dB levels as a hearing person can. I’m light years from learning how to distinguish different speech sounds and many environmental sounds. When you think about it, we don’t come into this world being able to understand spoken language; it takes babies, toddlers, and children years to develop their language skills. My “hearing” is only two months old even though I am an adult.

The world as I knew it for 25 years has been turned upside down. Every day is a surprise. I am slowly learning to work my way though this huge tangle of sounds one sound at a time. I have never once regretted my decision and am looking forward to finding out what the next two months has in store for me. I enjoy hearing new sounds. I also enjoy being deaf. I am and will always be deaf regardless of how much I learn to hear.

The newsletter is at: http://slc.edu/graduate/programs/human-genetics/newsletter/index.html