Thursday, July 1, 2010

Sounds, Sounds Everywhere

I'm on! My CI is activated! As I write this, my left ear is just under three days old, and I'm already realizing that the world is an unbelievably noisy place. I hardly know where to start - as I expected, my life has been turned on its head, and I'm at a loss for words. Let me back up and track the first two days, from the beginning.

Tuesday, June 29

5:10am: I jolt awake with my heart pounding, and immediately remember that today is the day. Of course, there's nothing I can do about it before the sun has risen, but that doesn't slow my pulse.

6:45am: I finally stop feigning sleep and jump out of bed. I feel relaxed and normal from my shower on through breakfast, but I'm consciously counting down the hours.

10:15am: Killing time around campus, enjoying the beautiful weather. One of my friends texts me and tells me it's the moment of truth. She thinks I should be scared to death. I'm not, though. Only curious and excited. What do I have to be afraid of?

11:00am: I arrive at the otolaryngology clinic for my first appointment of the day, a follow-up with my surgeon. He's a little late, and when I see him I have a sudden flashback to lying in a hospital bed with a gown on. Was that only two and a half weeks ago? He looks at the small pink scar behind my ear, runs his fingers over it, and tells me it's healed perfectly. Then he looks me in the eye and says, "Today will be your worst hearing day. You won't like it, it won't sound like what you expect, so don't be disappointed, okay? It'll only get better." I nod. This is what I've read from other CI patients, and I've been trying hard not to have expectations. But at the same time, I wonder what I've signed myself up for.

11:45am: Lunch. My mom and I wander around a bookstore. The hours have turned into mere minutes. I'm antsy.

1:00pm: It's time. My audiologist greets me in the waiting room and we walk back to her office. As soon as we enter, I see the Advanced Bionics box on her desk, propped open and waiting. My name is written on a sticky note on the side, and I realize that today marks my entrance into a new world. The audiologist tells me what my surgeon did two hours ago, that today will be the worst day, that I might not hear very much at first, that it won't make sense. Again I nod and say that's fine. I can tolerate whatever comes, right?

The box is chock-full of goodies. In addition to the actual hardware, there are cords, chargers, carrying cases, accessories, instructions, extras. We begin by taking the external processor out. The audiologist explains how the buttons and controls work, how it connects to the magnet and to the T-mic that curls around the top of my ear, how the heavy battery clips on at the bottom. It's very straightforward, not too unlike a hearing aid. When I take the fully-assembled behind-the-ear (BTE) into my hands, though, I realize just how big and heavy it is - probably twice as heavy as what I've been used to. The audiologist plugs the BTE into a computer, instead of a battery, and puts it on. I marvel at having something stuck to the side of my head, and wonder out loud if a refrigerator magnet would stick. The thought is ridiculously amusing.

The audiologist launches the Advanced Bionics programming software on her computer and runs a few tests. "You probably won't feel anything yet," she says - but, actually, I do. Like a sudden ping, an electric surge rushes through my body. I jump and say, "Wow, that was weird." Her eyebrows raise in surprise. Some more programming, adjusting the levels of different frequencies. I wait in silence, feeling tense. She looks at me and then presses the button on her screen.

Immediately - another electric pulse, this one stronger, running from my head all the way down to my shoulderblades. My whole body convulses in shock. I think I grip the desk and blink. "That was really weird," I say again. She smiles and nods.

We continue, testing different frequencies and trying to find a level that is neither mild nor overwhelming. Jolt, jolt, jolt. It's all the same, a universal tone - or, rather, a physical feeling. I don't know how to describe it, even two days later. It's not a sound, not a beep like I was told I might hear, though I can see why someone would label it as that. It's, quite simply, the feeling of a nerve firing in my head, over and over. I feel like someone's placed an electrode inside me and is shooting electricity through my body, the action potentials rushing down the same synapse - like a tetanus. It's not painful, just incredibly strange. I've become a giant human battery.

We finish programming my BTE at a level of "sound" that feels comfortable, then the audiologist takes it off and unplugs it from the computer. After replacing the computer plug-in with the regular battery, she hands it back to me. "Put it on," she says. My hands are fumbling; this is very different than hearing aids. I manage to wiggle the ear hook into the right place, then reach up along my head to where the internal processor should be. As soon as the magnets make contact, I feel an intense rush of electricity. It's like a shock. I jump, almost falling out of my chair, then the feeling eases, replaced by a pulse whenever there's a sound. The audiologist sits back, covers her mouth, and tells me to raise my hand whenever I hear her say something. Pulse. Pulse. Pulse. This is not sound at all - I don't know what the heck it is, but it's not what I expected. I don't know how anyone could expect this. I'm seriously weirded out.

2:20pm: Out of the clinic and walking around, officially bionic. We run an errand on campus, and when the clerk starts typing I turn my head and stare. The sound of the keys is surprisingly sharp and loud, like dice rattling inside my head. It's almost unbearable. In the car my mom turns on the radio and I realize that the CI fires along with the beat. It's the first time I've ever been so keenly interested in music. Even when we get out of the car, I find that the CI is firing all the time, and I often don't know why. I realize that, quite possibly, I'm becoming aware of sounds I've never heard before.

4:00pm: I go through the Advanced Bionics box the audiologist gave me and discover that, when I touch it, everything makes a sound. The plastic rustles - pulse, pulse, pulse! The light switch clicks - jolt! The zipper unzips. Pulse! I take a drink and hear myself swallow, the water coursing down my throat. Freaky. I walk and hear my footsteps. Sounds are everywhere!

4:50pm: We wander around the mall for a while, taking in the different sounds. I shut off my hearing aid, and with the CI none of the environmental noise makes sense. I'm still a live wire. Slowly I try to increase the volume. Whenever I do this, my head spins like it's going to burst with the power surge. I gasp like I'm coming up for air.

6:00pm: I meet some friends, and later we go out for dinner. My head is thundering with nerve impulses. It makes my eyes blurry, makes it hard to lipread.

10:30pm: Finally, I shut the CI off. By this time I'm utterly exhausted. Pulse, pulse, pulse. It never stops. Lipreading has required all of my strength and focus, which the electric jolts try to tear away, and I feel like I'm floating outside myself, in the land of the surreal. I read the CI instruction manual before bed. Never have I been so appreciative of silence. Is it possible that any of this pulsing mess will ever make sense?

Wednesday, June 30

7:30am: Showered and dressed, I pick up my CI to put it on - do I dare? Just like yesterday, when the magnets touch, I jump at the shock. When I'm combing my hair, the magnet falls off and I curse silently, then ease it back into place - zap! Will I ever get used to this? It's going to give me a permanent bad hair day.

10:00am: Time for my follow-up with the audiologist. She's impressed by the noise tolerance I've attained, and the fact that I can distinguish different sounds - even if it still just feels like electric jolts. I've also stopped feeling the sound all the way down my neck to my shoulderblades; it's localized to my head. We reprogram the BTE, and this time go way up in volume compared to yesterday. She asks me if I can distinguish between the different frequencies, but I can't. It's still the same uniform sensation of nerves firing, whether the pitch is high or low. There's no true quality of sound yet at all - only an awareness of sound being there. It's like computer code, 0 or 1. 0: no sound. 1: sound. Argh.

We test with a few different vowels and consonants, seeing if I can differentiate them. I don't do too badly for my second day, though the whole time I feel like I'm grasping at straws. I have an especially hard time making out the high-frequency speech sounds like "ssss" and "shhhh," though I'm hoping this will come soon. Despite the power of the implant, the sound quality is still much better with my hearing aid. The audiologist tells me about different exercises to do at home, and we discuss the different things I might hear, how I might progress. We're starting simple, with distinguishing three-syllable from one-syllable words. I already find this easy - just count the pulses! Ba-na-na.

12:00pm: I have lunch and see a few more friends, still trying to ignore the strange tones echoing in my head. Lipreading is still difficult, but I fare very well considering.

3:15pm: Heading to the airport in the car, I find myself needing to turn on the radio. This is not normal for me - with hearing aids, I only perceive music as garbled, annoying noise, and have always insisted, "Turn it off!" while driving. But the beat, which I can now hear and follow with my CI, is new and surprisingly appealing. I actually like it! I focus on it as hard as I can, letting it guide my thoughts. So good.

4:30pm: Airports are noisy places! I try to sit and read, but keep getting distracted by - I don't know what. Sound. I can distinguish between a voice over the intercom versus general background noise, which is something. My body already feels the physical toll, though. My head is bursting. At least I managed not to set off all of the airport security metal detectors with my hardware.

7:00pm: On layover in L.A. I hear a cascade of noises - luggage wheels clicking by, people's footsteps, the click of stiletto heels, a group of men laughing a few feet away. It's fascinating, but makes me nauseous. I keep clenching my head in my hands and wishing it would stop. Is the world never silent? I'm beginning to realize why people like music - surrounded by these constant random clashings and commotions, music is an escape, a reassurance, a pleasure. It's an auditory input that I can control. Even though I've never listened to an iPod in my life, I wish I had one now.

9:30pm: On our second flight of the day. The friendly flight attendant asks about my Advanced Bionics box, attempts to make conversation, but I'm too exhausted to lipread and don't understand more than three words. Unexpectedly he looks at me and signs, I love you! It's the only thing he knows. I grin and laugh.

11:30pm: Finally back home, and the CI is still pulsing. I feel like I'm inhaling the sound and holding it in the core of my chest. It resonates through my whole body. It drowns out my thoughts, consumes my being. All I can do, on the car ride home, is sit numbly and surrender to it.

12:15am: I turn the CI off, leaving only my right hearing aid, and heave a sigh of relief. The fog has lifted, I've returned to myself. But I immediately notice something strange. Though the CI is loud and unrelenting and exhausting, like an overbearing bull in the china shop of my mind, in comparison my hearing aid sounds flat. Disappointing. Mouse-like. Hearing without the CI, it's as though all the texture, all the liveliness of the world, has been steamrollered and squeezed out. What I hear with the hearing aid is sound compressed into a very narrow window, not allowed to sprawl out, romp, and ricochet as it would please. Though I've had more than enough of hearing for today, I almost long to turn the CI back on, if only for that startling and rich stimulation. But, when I go to bed and try to fall asleep, my head is still ringing. Pulsing. Insisting on the memory of what it's like to hear. Resisting the silence.


  1. Your commentary on the CI is so...detailed. Eloquent. Creative. Eye-opening. Fantastic =] I love how you have the wide-eyed awe of a child experiencing new things, and your realizations about how noisy the world is is something we don't really think about. It's so...refreshing? to have that perspective. And I can almost feel the sensations myself, which means you've done quite an amazing job putting something that complex into words. Your situation is also quite unique too, isn't it? To be congenitally deaf but implanted should write a book! haha.

    I'm also impressed you can keep your CI on for that long! Even today I listened to my iPod a lot (to break up the monotony of pipetting for hours) and my brain and ear aren't very happy.

    I'm fascinated especially by two things you touched on: what has changed about your perception of noise, and what kind of learning you and your brain have to do in order to hear with your CI. Amazing how plastic neurons are...

    Glad you're excited by noise, and I hope your brain gets itself into gear! Continued well-wishes and prayers =]

  2. JF;DAJKL;Afdjlka;dsa!!!!

    my bionic friend:
    this is all so exciting!!!
    you are amazing

  3. Fascinating Rachel! The much-less-than once in a lifetime experience to be fully using a...sense for the first time.. how weird (and similar to you) it would be to experience some 6th sense... hehe made a mistake above.. hope you're having a great summer all in all!

  4. Hi,

    Ms. Rhodes from AA. Jen passed along the link to your blog. It is wonderful to read. Your experience is causing me to think about many things. This seems to be a summer of thinking, understanding and not. I have a broken ankle, so I'm thinking a lot about senses, abilities, perception,relationships, dependency, patience and the interplay of chance and preparedness. I look forward to reading more.