Righty Tighty, Lefty Loosie?

Getting a CI is rather like checking items off a shopping list.

1. Do I even want a CI? check.
2. Am I a good candidate? check. (more about this later)
3. Which type of device should I get? check.
4. Which ear do I implant? ummm...

The last question was the most ambiguous to answer. Most CI recipients are implanted in one ear at a time - and, out of those people, only a few go bilateral. The reasons for this are varied, but mostly because research has shown that the second implant usually provides only a marginal benefit compared with the first. Indeed, I have a few friends and relatives who are deaf in one ear but have normal hearing in the other - and they function like regular hearing people for virtually all purposes. The only major benefit of having two ears, rather than one, is better three-dimensional localization of sound. (Biology nerd moment: the brain compares the sound input - loudness, temporal sequence in reception of sound waves - from each ear, then integrates them into a mental "mapping" of where the sound is coming from. We don't even notice this intricate process - it seems to come to us automatically, as we turn to look at an unexpected noise. But, without the input of two ears to compare, it's much harder to perform such calculations.)

I never seriously considered going bilateral from the beginning, to be honest. First of all, there's the impracticality of bilateral CIs for surgery and recovery. When I talked with a friend (who had recently been implanted) about the idea of bilateral implantations, he explained that surgeons are averse to it. They're reluctant to operate on one side of a patient's head, then flip that patient over on the surgical table, on top of a fresh wound, in order to operate on the other side. Just thinking about that made me shudder and agree wholeheartedly. I'm already going to face difficulties with sleeping immediately post-surgery, when I can only lie down on one side - imagine if I couldn't put pressure on either side of my head!

My second reason for not going bilateral has to do with my lingering reservations about the CI. As ridiculous as this might sound at this point, I view my upcoming CI as an experiment. If I do not like it, if it does not work out the way I hope it will, at least by going unilateral I'll still have one ear left. Seeing that my major objection to CIs has always been that I do not want to destroy my cochlea, why would I destroy both of them at the same time? Then, in the case of catastrophe, I would truly be stuck in a world of silence. If I do like the one CI that I get, I can always get another later.

Okay, I did not want to go bilateral: check. Now the decision came down to a game of eenie-meanie-miney-moe. Which ear to implant? Which one would allow me to hear the most?

At first, I honestly considered flipping a coin. Both ears are so bad that did it really matter which one I implanted? Look:

This is an audiogram that I got a few years ago. The thick line near the top, at 20 dB, is considered "normal" hearing. My threshold is far, far below that - 90 dB at the most, and that only for lower frequencies. Once you go along the chart to higher frequencies, I almost do not hear at all. (Just for comparision, the threshold of pain for hearing people - the point at which sound becomes unbearable and causes permanent damage to the auditory nerve - is 115 to 120 dB. At this point, without hearing aids, I am only just starting to hear. Another fact: decibels are logarithmic units, so what I hear is thousands of times below what hearing people hear.)

This absymal performance is, in the end, what prompted the doctors, audiologists, and other CI evaluation specialists to unanimously agree that I'm an excellent candidate for an implant. Of course, I'd be a better candidate if I were younger, but that's neither here nor there. Their decision did not come as a surprise - after all, was there ever any doubt in my, or anyone else's mind, that I really am deaf? Ha.

Again, with this audiogram in mind, does it matter which ear I implant? In the end, probably not really. It is true that my right ear has always been slightly better than my left (though you can't see much difference on the above graph). In listening and auditory training exercises, this is always the ear I prefer to listen with, and during audiograms it is the ear that always makes me most confident that I am actually hearing tones and sounds - rather than imagining them. In a random sentence comprehension task for my pre-CI evaluation, I scored 15% out of the right ear (most of that by guessing). My score for my left ear was only 7%.

Which is the better strategy, implanting the better or the worse ear? Several people gave me different advice. Some said to implant the worse ear - that way my margin of improvement will be greater. Others said to implant the better ear, because that's the ear I feel most comfortable with anyway. Still others had more unexpected opinions. Among them was implanting the right ear because it's on the side that passengers will be talking into while I'm driving a car. A valid point, and one I would not have thought of otherwise. (But what if I move to the UK?)

In the end, my decision was more or less a crapshoot. I decided to go with the left ear, in hopes of bringing that ear up to par. The right side can always join the party later down the road, if I so choose.

A last word: this will probably sound maudlin, but I'm sad to leave my right ear behind. I'm right-handed, right-eyed, right-legged (at least from skipping around the yard) - why not right-eared? In truth, this will be the first time that I have any dominant faculty on the left side of my body. I find that weird.

Advanced Bionics

The decision to get a CI is only the beginning. I stumbled into the whole process only vaguely aware of the choices that would be involved, the decisions and commitments I would have to make along the way. My first obstacle, once I had been evaluated and deemed a good candidate, was to decide what kind of CI to get.

There are three companies that manufacture CI devices - Advanced Bionics, Med-El, and Cochlear - and all three have their subtle differences. When I first went through the choices with my audiologist, she told me that all three devices had similar performance results, so there was really no going wrong. Essentially, she was telling me, in the long run it didn't matter.

This insight was echoed by the other professionals I talked to. My future surgeon told me that, when he and his other implant specialist friends convene for lunch, they debate about which device each of them prefers. There is almost never a consensus. "Each doctor has his own preference," he told me. "It's like talking about cars. Some people love their Ford, while others would prefer to drive a BMW or a Lexus." Again, he was saying, it didn't matter. I wanted to throw up my hands - I might as well pluck a name out of a hat.

Wait a minute, though. This is a huge decision that will affect the rest of my life, the way I hear - and I'm going to take it so lightly? Even the car analogy, upon closer scrutiny, breaks down. While some people are die-hard Ford supporters, I think it's true that a Lexus is a higher-quality car. Sure, all these car models have four wheels, an engine, and will get you where you want to go, but that does not mean they are the same. Preference and subjectivity may be part of the decision to get a CI, but I did not believe that all the CI devices were inherently created equal. My parents didn't, either. Which one provided the best technological platform, the best features, the best innovative potential? We set aside the noncommittal advice of the doctors and set out to do our own research.

Quickly, we found that it was almost no use to research directly from the companies themselves. All are subject to marketing techniques, and all have detailed statistics showing why their device's performance is better than the other two. In addition, talking to company reps was inherently biased. We began to search for more fundamental comparisions between the three.

Here is a general recap:

Cochlear. By far the "name brand" on the market. Has been around the longest, since the 1980s when the cochlear implant first came into prominence. Because of this, has by far the best publicity, the best advertising (involving beaming little kids running around with their parents looking on proudly), and the most users. The friends I have who do wear CIs all have Cochlear. The inner implant has a removable magnet, in case there's ever an emergency requiring removal for a MRI (scary possibility, but necessary to consider). However, the technology of the internal processor is lagging behind the other two companies. Cochlear has just come out with a new Nucleus 5 device, but this appears to "max out" the potential of the implant for any future upgrades. Admittedly, I found this device the most attractive. The new Nucleus 5 device has gorgeous aesthetics, compared with the other two - a sleek, slim external processor looking something like a cross between a Bluetooth device and some hip new Apple technology. The hand-held remote that controls its programs looks a lot like an iPod. Sexy!

Med-El. The second most used brand after Cochlear, and it has more removable/rechargeable battery options. The external processor was much less attractive, though - blocky and unwieldy, and looked as if it were made of a cheaper-quality plastic. Better performance electronically, perhaps, but the magnet on the inner implant is not removable. We didn't pay much attention to this one, to be honest.

Advanced Bionics. The largest (and, ahem, ugliest) processor of all, I must say. The first time I saw the external BTE, I thought, "Ugh, it looks just like a brick." But AB is a newer company, and has a more forward-thinking technological platform. The inner magnet, like Cochlear, is removable. The inner array has the best electronics, and the BTE has a patented T-mic microphone that gathers sound from the ear canal itself (where the pinna of the ear naturally collects sound waves), rather than elsewhere. The processor also has a set of new programs targeted toward making it easier to hear in noise and to appreciate music. Plus the company, from talking to reps, seems to have the most vision for future innovation.

In describing the three different brands, I think I have made it generally clear why I settled on AB for my cochlear implant. I will not explain all of the pros and cons of the different companies here; there are plenty of better-versed people and websites out there for that, and my overall impressions are enough. I am especially indebted to Tina's intensive research on the different CI brands at http://funnyoldlife.wordpress.com/cochlear-implants/choosing-a-brand.

I feel confident that I have settled on the best implant for me, and hopefully AB's future technological improvements will make the device more attractive to wear. To close, here is a more detailed picture I found of what the implant will look like, inside and outside:

Above is the internal processor (and its comparative size), below is the external BTE and magnet. Kind of scary, huh? You can see why the first CI researchers gathered criticism for "unethical" experimentation with humans...

But yet - it's amazing to look at and to ponder. The marvels of science.

Reversals

The odd part is that I decided to get an implant at all.

I had dinner with a friend last week, and when I told her about my CI, she laughed and said, "You? I'm shocked." But, really, if you had told me one year ago that I would do this, I would have been shocked too.

Until this past October, I insisted to my family, friends, and anyone who knew me that I would never be implanted. It simply was not an option. It would destroy the residual hearing that I did have left - and then, if by some mistake the internal processor did not work, what would happen? I would be stuck in silence, forever. Because of the nature of surgical modification, there would be no test trial. No going back. I regarded the prospect with sinking horror. With hearing aids, I may not hear much, but I do hear. Every morning when I turn them on and shake my brain out of silence, I walk around half-muttering to myself, as if gaining reassurance from the sound of my own voice. It gives me equilibrium. Before this year, I valued that precious hearing too much to give it up, even if with a CI I stood the chance to gain far more. Psychological researchers say that people, as a general trait, are risk-averse. I suppose that's exactly how to describe me.

Besides, even though it's been over twenty-five years since the technology was first introduced, cochlear implants are still controversial in the deaf community. The sign for "cochlear implant" represents a viper's fangs sinking into the side of the skull. This, other deaf people have told me, is not positive. Essentially, some of them believe, receiving a CI is somehow akin to being bitten by a viper. The internal processor is a foreign device imposed on the deaf by the hearing world, by well-meaning but ignorant people who think that being deaf is a tragic disability that needs to be "fixed." (Deaf people, in general, rebel against any suggestion that our hearing loss reflects negatively on our abilities or self-worth.) The external processor, in its unwieldiness, only adds to the stigma.

Before I go any further, perhaps I should make a distinction between deaf and Deaf. Little-d deaf people are generally people who lose their hearing later in life, or who disengage completely from the Deaf world. I consider myself deaf, because even though I have a congenital hearing loss, I live and function predominantly in the hearing world. I have few remaining ties to Deaf culture - for, with rare exceptions, all of my friends are hearing. Of these hearing friends, only a handful sign more than a small assortment of random words and phrases, and most do not sign at all. Considering my level of hearing loss, I would like to think that I cope very well. I speak and lipread, striving to function as much like a hearing person as I can.

On the other hand, I think of the term Deaf as embodying an attitude and a cultural outlook more than a physical characteristic. For Deaf people, being Deaf is something to be proud of, just like being French or Italian. There is likely no other disabled group in the world that bands together in this way. Blind people don't, wheelchair-bound people don't, learning-disabled people don't. These groups may share common experiences or sentiments, but there is no such thing as, say, Blind culture. The reason that Deaf culture exists, I am sure, is sign language. Because deafness is, at its heart, an inability to communicate normally with other people, it is something that requires a visual language to surpass the barrier. As any linguist will tell you, along with language arises culture. For big-D Deaf people, deafness is not a disability at all, but a rich and vibrant lifestyle. The tradition of Deaf people encompasses everything from not speaking and exclusively using ASL to going to Deaf schools and interacting predominantly with other Deaf people. The Deaf community is very small, and because Deaf people tend to have a harder time in the hearing world, they sometimes disdain any efforts to fully "assimilate" with the other side. Assimilation, of course, includes cochlear implants. (A note: I am somewhat oversimplifying this divide: there is a spectrum between deaf and Deaf, and many people are accepting of both the oral and the sign language traditions.)

Although I was mainstreamed from kindergarten on, I went to a Deaf preschool and still had regular, though infrequent, contact with other Deaf people through my childhood and early adolescent years. This contact, mainly through scattered friends and a camp for the Deaf I attended every summer, kept Deaf culture constantly with me. That outlook may not have defined my identity, but it contributed to my perception of myself. Although I did not always agree with Deaf viewpoints, I understood their mindset regarding CIs. Being deaf, I felt, ought to be something I accepted about myself. It ought to be something I could cope with without resorting to outright surgical alteration. Surgery meant there was something to be fixed, something about me that could never be good enough. Getting a CI skewed the focus: it made it all about hearing, about not accepting myself as I was, about trying to fix what was wrong with me.

So what caused me to reverse my viewpoint? I think the answer, in a word, is college. Before I graduated high school and left home to attend a university a thousand miles away, I had always had the support of my family and close friends. No matter what happened, I knew I could come home and communicate with someone. But when I started college, at a university where I was the only deaf undergraduate, all of this changed. I was surrounded by people I did not know, people who in turn knew nothing about communicating with a deaf person. Instead of a confined sphere in which I could feel comfortable, I had thrown myself into the full-fledged college lifestyle, a place of constant interaction with different professors and students, a place of crowded parties and large social groups and scattered conversation. This transition is difficult for anyone, but for me it was terrifying. I felt the full extent of my isolation. I felt as if I had plunged into a vast world that had not been designed for me. Although I had sign language interpreters for my classes and extracurricular activities, the rest of the time I was on my own. Lipreading, I soon found, was never enough. Some wonderful friends made efforts to include me, but many days I felt like I could barely cope. Although it ended up being a beneficial and stimulating time, in truth freshman year was an ordeal. I loved my university, but I did not love myself. And I realized that this was only the beginning of real life, of a world filled with sound. I had chosen to take this path. And I was left asking, How can I ever do this?

After spending the summer at home with family, I fell back into my old relaxation and rhythm. I again felt like myself, like Rachel. Most of the time, the word "deaf" was removed from the equation. Hence my culture shock when I returned to college in the fall of my sophomore year. I was prepared for it this time, and I knew that I could survive (after all, hadn't I survived before?), but this somehow did not make it easier. I interacted with old friends and made new ones. More and more of the people I knew expressed an interest in sign language. Overall, I felt more assured and self-confident. But, in certain moments, I was just as isolated as before. It was neither my own fault nor the fault of the hearing friends I had; it was just a fact of being deaf. Accept it, I told myself. You can't change it. Be content. I had come to view my circumstances as a test of strength and will, but this perception often crumbled in the face of despair. Increasingly, I came to resent the idea that I did not have a choice.

I remember, a few nights in early October, still at the beginning of the academic quarter, lying in bed at night thinking exactly that. I wanted a way out. I could not do this for myself, could not break through the wall of my silence to live the rich life that I wanted. Already an introverted person, in some ways I had become even more reclusive since coming to college. I resented this, just as I resented thinking of my situation as inevitable. I wanted to change something - but wasn't I already doing as much as I could?

The thought came to me: No. I was not. It wasn't inevitable. I had more to offer. And there was another option, an option that I had never allowed myself to consider. I did not want to think of it as a silver bullet or magic cure, for I already knew it was not. But it could help, if only I put aside my fears and my pride. It needed not be a political decision at all, but a way of pursuing the human connection I longed for. It need not degrade my dignity as a deaf person, but increase it.

That's when I first considered getting a cochlear implant.

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.