Grow, Brain, Grow

I have reverted to my childhood. Well, sort of. With each day that goes by, it becomes clearer to me that my CI ear is a baby ear, and that I must treat it accordingly. This means several things:

1. Not expecting it to sound like the natural hearing in my right ear, either in smoothness or coherence
2. Teaching it everything - and I mean everything - about the world, step by step
3. Being willing to accept and explore the surprises it discovers along the way

It's day seven, and I have made tremendous progress since the electric-shock feeling of first being turned on. I'm hearing much more, the sounds are more dynamic and complex than their initial one-dimensional jolts, and I'm having an easier time making connections between what's happening around me and what I'm hearing. However, I still have a long way to go. Environmental sounds still sound staticky and mechanical, and the sound quality with my CI is sorely lacking - though the sound quantity isn't! Being a perfectionist, and being used to my world sounding and feeling just so, this irritating robotic-noise soup is hard for me to handle.

That said, I did not expect the first weeks with my CI to be easy. Now is where the real work starts. Beginning with children's books! I checked out four books on tape from the public library last week, sat down with my sister's boom box, and proceeded to listen to them until the entire house was probably begging for me to stop. I can now practically recite Goodnight Moon by heart - not that that's an accomplishment! (It's amazing how much longer and more exciting these books seemed when I was young.) I've scoped out the territory, though: children's books on tape tend to be fraught with music, background noises, and corresponding sound effects. That's all very well for getting hearing kids excited about reading, but for me it's obnoxious and not at all helpful! Having a real live person read to me is better - now if only those pages wouldn't crackle when I turn them.

I'm hoping to progress to beginning chapter books and novels - actual novels! - soon, but it depends on how quickly my brain grows those nerve connections. To boost the expansion of my auditory cortex, I've been working on a variety of other exercises. I recruit unsuspecting family members and have them read three or four words to me at random while I try and piece together how on earth the noises emitting from their throats are connected. It's easiest to start with words with different syllable numbers - for instance, banana and corn - but I've been able to progress to a set of, say, four one-syllable words. Harder even is words that have very similar sounds, or words that only differ by a single phoneme. Advanced Bionics has a downloadable computer module, as well, that has similar exercises in flashcard form. I sit in my room for hours at a time, listening to the computer say "shoe" over and over again. (Most discouraging was the realization that, while I'm currently only getting 3 out of 5 correct answers with my CI, my score with my right hearing aid alone is a perfect 5/5! Although I guess I do have 20 more years of practice with that ear...)

The sounds are not at all like what I hear with hearing aids. They're louder and more distinctive, and I hear more of them, but as of now they make no sense. Only my knowledge of phonetics, gained from 18 years of speech therapy and even an introductory linguistics class in college, has allowed me to make any kind of progress. I guess by process of deduction: the noise at the end of that word was especially sharp and explosive, so it must be a stop. Or, that was a high-frequency buzz, so it's some kind of fricative or sibilant. It's a taxing intellectual process. I have no idea how other congenitally deaf people could handle it without a prior history of speech therapy. Astonishingly, though, I've discovered that I'm now hearing all of the sounds in a word, sharp and individual, whereas before I only heard some of them - and often left off sounds at the end of a word as a result. The CI is giving me all of the pieces, as fragmented as they currently are. The problem is putting those pieces together into a whole.

Other exercises I've done: distinguishing between higher and lower notes on the piano, which I find surprisingly easy. Listening for the doorbell versus a knock at the front door - something which drives both my dogs insane! Distinguishing between male and female voices. Contrary to before my CI, I now find that female voices sound clearer and more intelligible (I've always preferred those deep bass male voices, having very little residual high-frequency hearing). Listening to even more music. The vocals and other instruments are coming through now, wheezy and staticky, not just the beat. Listening to two minimal-pair words and distinguishing whether they're the same or different. Taking walks or just sitting somewhere and having someone point out the various noises in the environment. (New discoveries: the clock ticking, my dog panting, water running from the faucet, myself chewing or swallowing, someone dropping something or making a noise from across the room.) My baby ear is growing!

A Beginning

I've started this blog to tell a story. It's a story that will probably be ongoing through the next several years of my life, and I hope that, by writing, the journey will take on more sense and significance.

Two months ago, on March 14th, I made the decision to get a cochlear implant. I am 20 years old and have been profoundly deaf since birth. (By "deaf" I mean that I have a profound bilateral sensorineural hearing loss, but that's a mouthful. Like many other deaf or hard-of-hearing people, I object to the term "hearing impaired," finding it derogatory.) My decision to be implanted was fraught with complex personal feelings and numerous medical consultations, some of which I hope to go into here. It also involved settling on which cochlear implant manufacturer to use, a choice that at the beginning was far from clear. After weighing between the big three companies of the cochlear implant industry (Advanced Bionics, Med-El, and Cochlear), I decided to go with Advanced Bionics' Harmony device. Again, this was a complex decision influenced by internet research, published studies, side-by-side comparisons, technology platforms, Q&A publications, webchats with company reps, conversations with friends who have been implanted, and other people's blogs. As you can see, it probably deserves its own post.

My surgery is scheduled for June 10, just under two weeks away. That will be the true beginning, to which all of these considerations will be just a prologue. My story, however, does not start here, with this decision, nor there, with the implantation itself. Getting a cochlear implant may be a big change to my life - it may well be a beginning for some things - but it is not the beginning. My entire life, I have been deaf. My disability has not defined who I am, but it has shaped the path I have taken and the decisions I have made. Navigating the hearing world as a deaf person, equipped with the unique skills of lipreading and oral and signed communication, helped along by wonderful friends, parents, sign language interpreters, speech therapists, teachers, and mentors, has been an incomparable journey in itself. It has been full of many highs and lows, many rewards and frustrations. The skills I use are not always reliable, not always enough - and that is what has led me to my decision to get an implant. But acquiring these skills was the real start to my story, and something I hope to write about another time. Being implanted is just the next step, and I see it as a strange and stimulating new frontier into a side of the world that I have never known. The results of my pilgrimage are uncertain, but whatever happens, I know that I can already survive and succeed. At the very least, I am adding another tool to my arsenal.

Let me back up here. What exactly is a cochlear implant? This is a question I've received several times. Upon telling a friend that I plan on being implanted, I get a hesitant smile and the words, "Oh, that's great. Wait, what is it?"

A cochlear implant, for lack of a better description, is essentially a bionic ear. It's a surgically implanted electronic device that translates external noises into electrical signals that stimulate the auditory nerve and, resultantly, cause the brain to receive and interpret impressions of sound. Instead of amplifying sounds like hearing aids do, it bypasses the structures of the auditory canal to insert an electrode array directly in the cochlea (the snail-shaped sensory membrane in the inner ear). In a normal hearing person, the cochlea functions through thousands of tiny, hair-like cells, all of which fire action potentials in response to fluid displaced by physical sound waves. My deafness is sensorineural, meaning that my ear is normal except for the fact that I lack most of these hair cells on the cochlea. Think of a cochlear implant as a computer electrically stimulating my brain into thinking that it can hear. Some say that this is akin to becoming a cyborg.

The external processor has two parts, the behind the ear (BTE) speech processor and the transmitter magnet that conducts the sound signals to the internal device by electromagnetic induction. Mine will look like this:

(image from http://ciborg.lillarosin.com/en/tag/advanced-bionics)

There are many wonderful sites and blogs explaining more about how the device works, many of which have been invaluable to me in my evaluation.

Countdown to becoming a cyborg: 12 days. After the device is implanted, the surgical site heals, the external processor is turned on, and then the real journey begins. Countdown: almost one month.

My experience is especially interesting, because I am getting implanted at a later age. Most cochlear implant recipients are either small children whose parents decide to have them implanted, or older people who have lost their hearing later in life. Since stimulation of the auditory nerve is essential to establishing the neural connections that allow the brain to maximally interpret sound, anyone in my situation is at an inherent disadvantage. Although I have worn hearing aids my entire life, the amount of stimulation they have provided my brain is perhaps minimal. We shall see. Although encouraged by some specialists, my own parents declined to implant me when I was young because they wanted me to make that decision for myself - something for which I will always be grateful. But, in my situation, I find myself oddly alone. There is a general lack of prelingually deaf implantees out there. This is a complex and somewhat political topic, but again - more later.

Before closing, a final note: I struggled with what to title this blog. At first, I composed a list of phrases and puns involving the word "ear," and tried to think of some play on the word "audible." Longing to be clever, I knew I did not want to choose something like "Rachel's Cochlear Implant Blog." This journey is about far more than hearing, far more than cochlear implants - it encompasses fundamental questions about identity, communication, and interaction. (If this does not make sense now, I hope that it will soon.) In the end, the title "Perception Unearthed" seemed to fit. I pray that my cochlear implant journey will teach me far more than just hearing. I pray that it will uncover, or unearth, startling insights, lessons, and perceptions about myself and my world. I constantly dwell on clarity and discovery. And, as a means to attain this, I write.