A New Story

"Every great personal story you have to tell involves overcoming adversity. If you shy away from adversity, you take away your ability to tell new stories." Farrel Droke

Some days are better than others. Today was a better day.

I knew my cochlear implant journey would be fraught with frustration -- an emotional roller coaster of ups and downs. I don't doubt for a minute that getting one was a good decision. Most days, I plod along clinging to the promise that my brain will eventually make sense of it all and I will reach a state of contentment and ease. But today, there were victories large enough for me to notice, though no one else could know.

I can hear my students better. The quiet muttering of answers to questions asked; the tattling words interrupting my reading group; the quiet confession of leaving homework at home... all small victories that tell me I am progressing, slowly, but surely.

My husband turned the TV to mute before he started talking to me. My parents invested in text messaging just for me (the telephone remains elusive right now). People turn to face me before they speak, and they are taking turns instead of talking all at once. These are simple gestures. But they make all the difference in whether I'm able to understand the conversation or not.

It's hard. The learning curve is huge, not just for me, but for those around me, as well. And it's exhausting. But I know I'm making strides. My journey is far from complete.

The bend in the road is not the end of the road -- unless you refuse to take the turn. I have to continue this journey. If I don't, the alternative is being deaf; and I don't want to be deaf.

Chagrin

I really hate being deaf.

I can't hear well enough with either my hearing aid or my cochlear implant to make much difference. "It'll get better." they say. "Keep working," they say. "Don't give up," they say.

Truth be told -- this cochlear implant is nothing like "they" say.

The constant garble of noise that assaults my senses wears thin on my nerves and my patience. It's like a never ending deluge of distorted sound mixed in an incomprehensible stew of noise -- from the gurgling of the ice maker to the whooshing of my hair when I moved my head. My brain hears everything, yet filters nothing.  I am inundated with sound both wanted and undesirable.

It gives me headaches. It makes me tired. I cringe at sounds that are too loud -- barking dogs, doors closing, dishes clanging, sirens wailing, and unmuffled cars. I strain to hear things I want to hear -- the drive-thru speaker, TV, conversation with family, and phone calls from friends. The only relief I get from this noisy world is to take my processor off and plunge myself into muted deafness. Neither is desirable to me. I walk between two worlds -- that of the hearing and that of the deaf. One I desire. The other has ensnared me.

I face my biggest challenges when I'm around those who don't understand that "hearing" with a cochlear implant is a poor substitute for normal hearing. It did not miraculously make me a hearing person again. It did not deliver instantaneous comprehension of speech and conversation. It did not restore my life as a hearing person. It did not fix all that is wrong with my ears. People get frustrated with me repeatedly. And their impatience with me increases my agitation and apprehensiveness with this process even more. It's a continual struggle to make this work. And I get discouraged often. I hate to admit it, but more and more, it's easier to be alone.

I am deaf. I hate that. To my chagrin, not a day goes by that I don't wish I could go back to the way it was before.

I Liked You Better Deaf

I'm definitely a cyborg. Part human, part machine. And I have the equipment to prove it: batteries, cords, wires, magnets, and devices to use with my cochlear implant. I'm a freaking technological wonder. 

My favorite device is my little pill-box sized remote control. I can use it to turn my volume up and down and change my listening programs for my cochlear implant. It's hidden in my pocket at school. I carry it in my purse at other times. It sits on the armchair at home. It's my constant companion anymore. I make sure I have it wherever I go. It's my new best friend.

I've only recently begun playing with the settings to optimize my hearing and listening. I've discovered that tweaking it just a little can bring voices forward or send background noise back. Raising the volume helps clarify speech, while lowering the volume makes lunchroom duty at school a little more bearable.

My students can't fool me anymore. With a simple click on the remote, I can amplify voices so that I not only hear them, much of the time I can even identify who is the talking culprit  -- an impossible feat for me only one month ago. It's quite a wake-up call for them!

They're not the only easy marks of my new hearing life. I can hear my daughter crack her knuckles again. I HATE that sound. And she knows it. "Stop cracking your knuckles," I tell her, without missing a beat -- as I've told her so many times before. 

"Ah, man," she says with a wink. "I liked you better deaf!"

I think my students did too.

Goodnight Alvin

I am tired of robots. And cartoons. And chipmunks. Yes. I am tired of chipmunks.

I was sitting on the sofa tonight checking my messages, trying to ignore the noise of the TV and the barking of dogs outside and the dishwasher clattering in the kitchen behind me. And doing a very poor job of it.

Before looking up from my tasks, I was shaking my head at my 20-year-old daughter who was once again watching some silly cartoon on TV. She is an ardent fan of everything Spongebob and I frequently turn on the TV and find it tuned to Nickelodeon. The words, "Aren't you a little old to still be watching those cartoons?" had already formed on my lips.

But to my surprise, she wasn't watching a cartoon. They were real people. They only sounded like cartoons to me.

My frustration erupted a while later, when in the middle of my listening practice, I unplugged the audio cable connecting my cochlear implant processor to my computer. "Oh my gosh!" I cried out to my husband. "Listen to this!" His expression was one of bewilderment. "What about it?" he asked.

I forget other people don't hear what I do... The garbled, warbling chaos of sound was actually a man saying, "There are many ways to skin a cat." No way.

My brain is making sense of a good deal of sound and speech, I know, but impatience is my black beast -- my curse.

I'm tired. So tonight, I just unplugged and let it lie.

Goodnight, Alvin --
and Simon and Theodore.

Another Step Forward

Tomorrow I will return to my classroom for the first time since my cochlear implant was activated. It is time, though I am terribly anxious about what awaits me when I get there. I hit the ground running in my aural rehab and listening exercises this week, and I plunged myself into various listening environments throughout the week to prepare myself for the inevitable. I've made gains in my scores, but I'm still feeling a little uneasy about returning to work.

At best, I can hear a great deal of things around me, and with my hearing aid in one ear, I can tell that I hear better with my CI, but it's still extremely robotic and difficult to understand. I get confused with all the auditory stimuli I'm inundated with.  And that's what makes me so nervous.

I went to a noisy cafe this afternoon to practice listening one more time -- a place that has been really difficult for me to hear, place an order, and pay without having to ask the poor cashier to repeat everything multiple times. I was actually able to carry on a conversation with the young man who helped me today without asking him to repeat himself. It made me feel a little better.

But these scenarios are pretty controlled, and relatively quiet when compared to a classroom full of excitable six- and seven-year-olds. So I'm still apprehensive.

It's another step forward, I tell myself. It's one of the reasons you submitted yourself to getting a CI -- so you could continue working. It'll be good, I say. You have a volume control! It'll be OK! 
 [My self-talk isn't helping.]

Pretty sure I won't rest well tonight. My mind is full of what-ifs again.

Heigh ho...

One of My Favorite Things

My CI life is mostly uneventful -- days filled with listening exercises and determining new sounds and their sources. It's actually quite tedious and repetitious. I would like it better if it were what most people believe it is -- a miraculous and instantaneous route into the hearing world. But, alas, turning on the cochlear implant only turned on the sound. I'm the one who has to make it work.

I find my mind wandering while I'm engaged in the endless monotony of identifying vowels and consonants in real and nonsense words like "uwu" and "kayed" in my listening exercises. It's easy to become distracted by the humming of the refrigerator or the TV playing in the next room.  I have to close my eyes and listen to the program intently or I have quite a lot of trouble differentiating the sounds. I'm a frequent user of the "replay" feature.

Two nights ago, I retreated with my laptop to the solitude of my bedroom for my daily practice, only to be joined within a few minutes by my husband -- who'd decided to take a bath. I could hear the running water in the adjoining master bath (through the closed door) like I was sitting right next to it. I plodded forward in spite of the interruption, clicking the endless repetition of words that flashed across my computer screen.

It was then that I became aware of another sound. This time unfamiliar and unrecognizable. I thought at first that it might be the CD rom in my computer, coming to life with clicks and hums. Only there was no CD in the driver. I stopped the listening program and unplugged the personal audio cable that connected me to the computer. I listened intently to try to determine from where the sound emanated. Not in the bathroom where my husband was soaking. Not from the computer. Not from the TV room next door. Not the heater. No. This low, rhythmic, and almost soothing sound was barely audible. And it was driving me c-c-crazy.

It was after I set my laptop down on the bed beside me to go in search of this new sound mystery that my cat, who'd been laying beside me, seized the opportunity to jump into my lap and put his nose against mine. That's when it hit me.

He's purring!

I grabbed his face and pulled it close. A purr! A sound I'd loved so much before my hearing loss and thought I had lost forever. I cried. I couldn't get enough. I'm a blubbering fool, I know. But it is, indeed, one of my favorite things.

Something as simple as the purring of a cat reminded me that this is, undoubtedly, a journey full of mystery and magic. And in the midst of the mundane, exceptional joy can be found when you least expect it.

CI and the Brain

A cochlear implant miraculously delivers what it promised: sound.

But that sound is neither pleasant nor stellar. "It will get a little bit better every day," my audiologist told me. That's a good thing.

On this 4th day of activation, I can tell that I have gotten a little better. But it's still quite awful.

The tinny, robotic, digital world of cochlear implant sound is a little like listening to a bad AM transistor radio -- through the ear buds that are in the ears of someone next to you who is playing it just loud enough for you to hear the babel, but not loud enough for you to know what you are listening to. (They'll be sorry one day for ruining their ears, trust me!)

I live in a very noisy world. A world I hadn't paid much attention to before. The sensitivity of the CI to pick up even the slightest sound is impressive. I hear everything. Literally. The hum of the refrigerator fan, the low whoosh of the heater, the clicking of my dog's toenails on the hardwood floor in the next room, the rhythmic ticking of my mantel clock, the swishing of my arms against my shirt, even the constant cadence of my breath. They are loud, and they are incessant while my CI is on.  Yet, I'm still startled when my husband and daughter approach me from behind. I'm hoping the latter part gets better sooner than later.

Speech is the thing that's difficult, and music is impossible right now.  I am beginning to tell the difference in men's and women's voices, and if I listen very intently, I can hear minute differences in timbre. Men's voices have a slightly less robotic quality, but the words are more muffled. I strain to hear and understand what is being said to me in person, but the TV is more comprehensible, mostly because of the closed captioning -- something I am enormously grateful for! I turned the volume of my CI to 10, which has helped, but I have decided I will need to ask my audi to turn up the volume when I see her next week for my second programming.

I have faith that it will get better. I will dutifully wear my CI and tend to my daily rehab exercises and carry the hope that someday -- it'll all be okay. But I have a feeling it's going to take a whole lot of practice to program this old girl's brain. And it will take patience. I'll need a lot of that, for sure.

I am told that my brain will make sense of it all -- slowly transforming my robots into humans again, and it will learn to filter some of the environmental sounds. I am in awe at it's amazing capacity for learning and adapting. It is nothing short of remarkable. 

Maybe we will take over the world.