Monday, April 9, 2012

Fears, tears and a final song

A very fast week has passed since my first post, and at this point, my surgery is nine days away.  NINE DAYS.  The initial high I experienced after sharing my story  is quickly transitioning into a feeling of sheer terror.  This is really happening. 

I am currently dealing with a mixture of bittersweet emotions.   One moment, I picture myself going on vacation in June, hearing the whole sound of the ocean with my family, and feeling a sense of joy and gratitude I didn't know existed.  Another thrilling idea is that I won't have to turn my head to look at people... how amazing to cook dinner, and not have to stop chopping in order to look and understand what my child is asking me!  Thoughts like these make me want to drop everything to get the surgery RIGHT NOW.

Then there are other situations I visualize that leave me incredibly anxious and worried.  One of the scenarios I keep running through my mind is when I first wake up from the surgery.  I'm preparing myself to hear silence, as there is a good chance I will officially be deaf in my right ear post-surgery.  It is not a guarantee that this will happen (some of my residual hearing might remain), but there is no way to know for sure. 

Let me explain the reality of the surgery.  When I currently hear through my right ear, sound travels via hair cells in my cochlea.   Since I don't hear well,  I imagine most of those cells are already damaged and/or nonexistent. Still, some must be healthy and functioning which explains how I can hear about 20% of sounds.  For the implant to work,  the surgeon must swirl a wire through my cochlea, all the while, potentially damaging the good hair cells, and possibly eliminating my ability to hear any sounds naturally through that ear. Of course, with the implant, after recovery,  I should be able to hear much more than 20%, but the reality is that I will be dependent on the implant and processor for quite possibly the rest of my life.  It is a terrifying concept.

Another scary question: What will the world sound like with the implant?

After my surgery, and a few days of recovery,  the implant will then be "turned on" or "activated" by my audiologist.  I've read several accounts of how other implant recipients describe the activation process, and I've learned it is a very individualized experience.  Some people hear right away; others have to work weeks, or even months to really hear well.   Some recipients describe the activation process as a series of loud beeps and static, maybe a few pops here and there, with voices initially sounding like robots or Mickey Mouse.

The Mickey Mouse voice description is tough for me.  I've cried a lot over that. 

I can't help but to choke up thinking of my children's sweet voices suddenly turning into robotics-- the thought alone was enough to make me question going through the surgery at all.  Right now, I can recognize Colin and Claire's distinct voices;  they are precious to me, even if I don't usually make out the words my kids are saying.  Other recipients have assured me that while it is hard to explain, my brain will adjust, and Colin and Claire's voices will become "normal" in time.  Still, I feel like I'm saying a final goodbye to those voices next week.  I keep questioning if my brain will remember the pre-surgery versions of them calling me Mommy.  It's tough to think about.

I also fear how I will make sense of music.  So many people have expressed excitement that I will be able to enjoy music with the CI, which is a strange concept to me because I have TRULY enjoyed music as a hearing impaired person.  For example, I've been dancing for as long as I can remember... probably since I could walk.  Some of my best performances include competing as a hula dancer at the age of 5, an epic solo performance to Janet Jackson's Rhythm Nation in fifth grade, choreographing a huge group routine to Debbie Gibson's Electric Youth, and several age-inappropriate routines during my middle school years (Giving Him Something He Can Feel at a Bat Mitzfah?  Yes, that was me.  I'm so sorry, Mrs. Leviner.)  As an adult, I'm still dancing.  I consider myself quite skilled at Zumba, for example, and when a tipsy lady at a wedding wants someone to join her on the empty dance floor, my hand is the one that she grabs.   I am totally cool with this; I love to dance.