Tuesday, July 2, 2013

The Guinea Pig and the Machine

I went for another mapping of my cochlear implant yesterday. That makes three now if we're counting activation.

To be perfectly honest (is there any other way to be honest?), life with my implant hasn't been quite what I had hoped (but, it's probably been what I expected. "High hopes, low expectations," remember?)

The sound coming into my brain can't really be described as sound. Vibration, yes. Feeling, yes. Earth shattering shock, yes. But sound? Well, not so much.

Yesterday I worked with Ellen and an intern. Ellen is a patient, curious, relentlessly perky audiologist. I can tell when she works with me she really, really wants this to be a success. Instead of scolding me for not wearing my CI for three weeks, she said, "Let's see if we can figure out what's going on here." Into the booth I went.

She did not put me through the humiliating speech-recognition portion of the hearing test – sadly, I'm still at zero percent and she took my word for it. Instead we went through the usual "raise your hand when you hear the sound." Only in my case, it was "raise your hand when you feel the sound."

Then back to the office for the series of beeps and buzzes and seemingly endless questions. "Is this too loud? Too soft? Tell me what it sounds like when I do this" (types something into the computer and pushes a button apparently marked "send Shannon's head spinning into orbit." Shannon's head obliges.) It's difficult to honestly assess my progress in this portion of the map. The CI exacerbates the already raging tinnitus in my right ear (which is part of the reason I hadn't worn it for three weeks) and makes discerning what I'm honestly hearing from what I think I'm hearing a monumental task.

At the end of the "mapping," Ellen and I had a liberating conversation. "You are exactly where you should be," she said.

I was relieved but confused.

Ellen explained.

As it turns out, learning to hear with a CI in one ear and fairly good usable hearing in the other is a little bit of a challenge. The two ears are sending entirely different signals to my brain and my brain is revolting. It doesn’t like it and can't make sense of it --- yet.

Eventually, a year, maybe more, my brain will learn to make use of the two signals and something like sound will take the place of the rattling going on in there now.

At least that's the hope.

Certainly there is always the chance that this costly experiment will be for nothing, but until then, I will be wearing my CI daily. We've decided to focus on simply wearing it. "If you won't wear it because it's uncomfortable, it won't get better," was the way Ellen put it. "So we'll worry about practicing word recognition and sound awareness later. Right now we just want it on."

We dialed back the sound a little bit with the goal of turning it up in small increments as time goes on. It’s a struggle, but one Ellen and I hope will be worth it in the end. So, I'm pushing through the discomfort.

And looking forward to progressing – however slowly it may be.