I’m considering a hybrid cochlear implant, and I’m terrified, but I’m going to move forward.

January 6, 2013 – 10:43 am

I refused to consider a cochlear implant when I was a kid. My parents remember getting articles about the surgery from friends and family; it was a new surgery back then, approved for children by the FDA in 1990, the year we found out I had lost my hearing from the antibiotics used to treat my pneumonia. I was 4.

But it was a new technology, a new surgery. A surgery. My family’s not huge on surgeries and medical interventions unless they’re necessary, and this one didn’t seem to be; after all, I was talking, lipreading, doing well in school even if I kept my hearing aids in my tiny elementary-school pockets more than my ears. Why drill a hole in my skull when I was at the top of my class and learning voraciously through reading reams and reams of books to get the information that I couldn’t hear?

When I got older and the topic came up again, my answer was a flat-out no: I wanted music. Cochlear implant users lost a lot of resolution; harmonic relationships got distorted, music reportedly sounded bizarre. (A recent lit review on music perception of cochlear implant patients goes over this in more detail.) I was a competitive pianist, a touring cellist, picked up other instruments (madrigals recorder! guitar!) for fun, arranged a capella pieces… why would I ruin something I loved? I had residual low-frequency hearing, and a cochlear implant would take that away; sure, it would give me bionic versions of high frequencies I didn’t have, but it would replace my low frequency hearing with electronic beeps and buzzes as well.

Towards the end of college, my classmate Jay Gantz interviewed me for his humanities capstone on hearing-impaired musicians. Sometime during the course of our conversations, he mentioned his dad, Bruce, was working on a new thing that I might find interesting: a hybrid cochlear implant. This used a short electrode that only went partway into the cochlea, giving you bionic high frequency hearing and leaving the low frequency hearing untouched — if all went well. You’d use acoustic amplification (as in a normal hearing aid) for your low frequencies that were good enough for it, and have digital signals replacing the high frequencies that were cochelar dead regions that couldn’t do anything anyway. It sounded cool, but once again… why would I need it? I didn’t know what I was missing, and didn’t really care — I didn’t seem to need it, anyway.

Fast forward several years. I’m in grad school. I’ve seen more glimpses of what I’m missing, and I wonder what it would be like to try for it. After talking with a faculty member who got a cochlear implant as a graduate student and hearing how the implant had changed her ability to teach and speak and work with students, I was awed; her “before” practices and compensations sounded exactly like mine. Q&A is hell. Control your classes, control the interactivity; you can’t respond to much when you have difficulty hearing, so make sure your students are only interacting with you in the ways you can respond to them. Craft your talks so audience interaction comes in predictable ways at predictable points. Control, control, control — because you need to be on firm ground, you need to not be adrift, you need to be able to respond professionally… and do this all so naturally that people don’t notice that you’re working with constraints that are constraining them too. It’s like playing Ravel’s piano concerto for the left hand. It is remarkable; it sounds glorious, and it is no less a great piece than any concertos written for two hands — you don’t listen to it thinking “what a shame this piece uses only one hand!” — but there are so many more concertos written for two hands, such a wider range of things you can play with it.

I’m a good teacher and a good speaker; I have a natural knack for both, and am honing my skills deliberately in both spheres so I’ll develop that talent into greatness. And I am at the point where I can see my inability to hear and to respond to people speaking to me in those situations as a limitation, as a ceiling that stops me from getting better in certain ways I’d like to improve on.

Bruce Gantz is in Iowa; the surgery is now in the 2nd phase of clinical trials. Northwestern University also does it, and it’s half an hour from my parents’ house. I’m not sure how I would afford it. I seem to fit the criteria for candidacy, but need to get evaluated at a surgery site to be sure.

The professor with a cochlear implant that I talked to recommended scheduling the surgery for when I’m ABD — all but dissertation, finished with classes and with only my thesis to write. I could take the time I need to learn how to hear again without worrying about paying attention to lectures, and by the time I graduated, and started teaching in my own classrooms as a faculty member (if I go that route), I’d be used to it. The wait-for-later alternatives are stopping the tenure clock or waiting ’till my first sabbatical and dedicating that to surgery rather than research. If I’m going for this, grad school really does seem to be best time.

But there are risks; I could lose my hearing instead of adding to it. And there are expenses, and I’m not sure this is how I want to use my savings — how about a house, how about travels, how about all the others dreams I have? And there’s equipment that I’ll need to maintain and rely on for the rest of my life. And there’s my other crazy plan for my ABD time, which is to write my dissertation on a round-the-world ticket. Could I get the surgery next winter break and take spring semester for intensive aural rehab while continuing to conduct my dissertation interviews? (Would I want to give up the opportunity to dance next spring semester again because I’ll be recovering from surgery? Would I have to?) Would I be ready to launch around the world on a language-learning, world-travelling odyssey the following year, good location-independent dissertation writing habits in tow?

I don’t know. I don’t know at all. It’s ludicrously ambitious. It’s…

I mean, the round-the-world language-learning tour would certainly be far easier if I could hear more frequencies. I’m pulling off so many simultaneous compensatory strategies when learning spoken languages that I can physically feel the strain and exhaustion that result afterwards (if you’ve ever done language immersion classes and know how mentally exhausting those are, imagine doing them with earplugs in; my hearing’s far worse than that). I’m… I’m pretty crazy. I do things like this. Sometimes they even work. It would be one hell of an adventure. And I want to hear. And I can take the risk. It’s only one ear, one side, at a time.

And so I’m checking out that possibility. I’ll take a deep breath and write some emails after Mass, I think. It’s… what do I pour all of my energy into, all of the massive energies I have? Maybe… maybe it’s this. Maybe it’s supposed to be this. I’m going to find out.

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  1. 7 Responses to “I’m considering a hybrid cochlear implant, and I’m terrified, but I’m going to move forward.”

  2. Responding to Steve’s comments on facebook here…

    Stephen wrote: “The industry works extremely hard to promote the success stories and suppress all of the failures, side effects etc.

    I’m sure they do — that’s how marketing generally works.

    if you want to make an informed decision you’ll have to spend time talking to students at Gallaudet and/or NTID many of whom stop using them for one reason or another. When they work for the people they work for they can be great, but those are the only stories you’ll find unless you do real research with the populations who are large enough to provide you a real
    base of information”

    I’d love to do that. What would be the best way for me to get started,
    get in contact, talk with those people and ask those questions to the
    non-choir?

    At the moment, I’m primarily interested in talking with people who are
    as much “like me” as possible — successfully oral from early childhood,
    with pretty much all my friends and family in the hearing world, and
    interests (music, dance, language) that benefit from having better
    auditory input. That having been said, my interests in talking with
    people “like me/that” comes from my current thinking, and I’m totally
    cool with having that thinking challenged.

    The two case studies that have most inspired and influenced my thinking on this are of two fellow academics/hackers/geeks who grew up oral and with hearing loss. One got his cochlear implant as an undergrad (we met as undergrads in STEM, and are now both grad students after some gap time in industry) He does sign and take part in the Deaf community, but came to it later in life. The other is the professor I mentioned in my post, who does qualitative research on online communities (similar to me) using research methodologies I’m also keen on — and she has a dance background as well. I don’t think she signs or participates in the Deaf community.

    A side note for the record — although I think you know this already — I’d like to learn more about and how to participate better in the Deaf community and culture, but I’ve never really been in a great place (geographically speaking) to do that — the opportunity cost has always been too high, and “opportunity pricing” for other interests I’ve had have always been better. So if I’m in a good place for it at some point, I’ll do it — but in the meantime, I’m in environments better suited to my learning of other things, I think.

    Anyway, those two are the two people most “like me” I’ve found, and both of them think the implant was a good idea for them, although not without its difficulties and tradeoffs (the adjustment period, I keep hearing, is painful as hell — but I’ve had tastes of much milder versions of that with my hearing aids, and I can get through that). I know n=2 is very little data, and I’d like more; I’ll learn all I can before deciding to crack open my skull. (And in the end, each individual case is very different, so at some point there’ll be nothing else to do other than see whether something works for me, or to decide the risks still outweigh the benefit potentials.)

    By Mel on Jan 6, 2013

  3. “Arthur manages to escape unharmed, partially due to learning how to fly after falling and missing the ground while catching sight of a piece of luggage he had lost at a Greek airport years before.”
    If there’s anyone who can learn to fly when placed in a difficult stop, its you. Your track record speaks for itself. If/When you decide to take this leap, the world will be waiting to embrace your borg-like? transhuman? cyborg? Mel 2.0. Either way, we win, its that the maps will be changed and our route to meet you will be different.

    By kevix on Jan 6, 2013

  4. A quote I happened upon today, without searching, that might be relevant.

    “Fear is a liar.”

    By Grant on Jan 6, 2013

  5. Sometimes. I prefer to think of fear as a teacher. It can point you towards things you wouldn’t have noticed otherwise.

    By Mel on Jan 6, 2013

  6. Two things —

    First: ASL is not an either/or proposition – it’s a big AND. You’ve done pretty well in learning different languages, especially as a resident of a stubbornly monolingual country. Use the same techniques that you used with other languages in application to ASL, with a few modifications of course. This would greatly benefit your implant, because you have visual input to bolster your auditory input. Studies have shown that ASL helps with the implant.

    What’s more, traveling around the world gives you the opportunity to meet the international signing community. Signers are everywhere, and usually accommodating to various communication ways if the general attitude is positive and open. It has nothing to do with your hearing.

    That said, I do wonder why you haven’t already started signing more yet –

    Second: I noticed two things in your comments — “successful oral” and “no community where I am.” One of the saddest things about the oral educational method is that proponents tend to be so afraid of ASL and signing deaf people that they institute attitudes that encourage sequestration of children from others. If this was done in general education there would be a great outcry, yet it is a matter of course for oral deaf education.

    “Successful oral” tends to mean “successful compared to signing deaf people (because they don’t speak according to the expectations of our training)” I say this because it contributes to “no community where I am.” Of course there isn’t — you don’t have the connections that will help you jump into the community no matter where you are, and you may be afraid to because of the overtly spoken or unspoken attitudes that were instilled in you from a child. That can be easily remedied with action on your part, even if it’s one small step.

    A little background: I was raised to speak and hear, in addition to signing. I am profoundly deaf, with very low frequency hearing. I remember the attitudes in the mainstream program I grew up in – “Don’t be like signing deaf people, they are low-class and you are smarter/better than that.” Today I do not speak unless a situation warrants it — because I don’t need to. As a mom my life is very busy yet I am still immersed in the signing community through my online social contacts and VP. It’s not that there’s “no community where I am” – it’s that over the years I met people through ASL and maintained that contact.

    The cochlear implant is indeed a risky surgery, but it itself is not the issue. Are you prepared to face your own ideas and internalized beliefs and figure out where you really want to be as your own person? What are you afraid of?

    That’s more for you to answer privately — none of us need to know the answers. :) Hope this helps at least, feel free to email me if you have any more questions.

    By Adrean Clark on Jan 7, 2013

  7. One more thing, to be clear — I don’t need to speak because I have many different ways to communicate with the hearing people I see every day. We write with each other, lipread, gesture, whatever it takes. I personally feel that depending on listening/speaking is like leaning on a broken reed, it can snap at any minute and leave us both disconnected and lost. Having many options makes it a lot easier to get along. :)

    By Adrean Clark on Jan 7, 2013

  8. http://www.bbc.co.uk/news/health-20960418
    Just saw this, but I dont expect it to have any impact for many years.

    By kevix on Jan 10, 2013

What do you think?