Saturday, July 10, 2010

Order from Chaos

It's coming in baby steps, but with each day my hearing gets better and better. I keep marveling at the ability of the brain to adapt and rewire itself. My brain has somehow filed away an amazing number of sounds in only eleven days, and now I'm approaching a much more cohesive portrait of what the world sounds like. Still imperfect, still grainy and somewhat mechanical-sounding, but cohesive. What is essentially the staccato note of a nerve firing, over and over, is being interpreted, smoothed, and woven into a larger tapestry. I'm beginning to accept the presence of sounds new to me, and even to expect them, all while I listen for new noises. Which include: Myself chewing - and very loudly, I might add. Myself fidgeting and tapping my foot on the floor. The whir of the computer. The swish of clothes as I walk. Notes on the piano, high high low. Words suddenly fitting together as I hear them read from the storybook page. My current CI volume is maxed out, and I'm hungry for more - which is great since I fly back to CA tomorrow for a re-mapping on Monday!

This entire process is essentially order emerging from chaos. And it happens with little conscious effort on my part, besides attention and practice. It's all my brain figuring out this new stimulus, and starting to do that with poise instead of going haywire. (Now there's actually space inside my head for me to think, which is nice.) Imagine how many new synapses it must have formed since last week. And consider the fact that the 16 electrodes, or even the 120 virtual electrodes, of the implant are nothing compared to 16,000 normal auditory hair cells. If I "hear," it's all because of brain integration. I'll say it again: brains are remarkable, remarkable things!

At the same time, I keep wondering if the new connections I'm making are overriding older ones. I'm curious if that auditory cortex space that I'm learning how to use (heretofore almost useless, since I heard so little for so many years) was previously storing other information. Where would that information go? What was that part of my brain being used for? Surely it can't just have perched there, inert, for 20 years. Perhaps that's part of why CIs are harder for older congenitally deaf recipients to adapt to - the established nerve connections don't want to let go of their "free" storage space!


(The auditory cortex, highlighted here, must keep lighting up inside my skull! Check out the awesome source article, which discusses music and auditory memory, at http://www.dana.org/news/brainwork/detail.aspx?id=766.)

Of course, it's technology that makes all this possible, and once you start it's hard to go back. And, it seems, many people who are implanted never do. I had breakfast with a longtime friend earlier this week, and we discussed the decline of sign language and Deaf culture, mostly because of the advances of CIs. The Deaf community that was present several decades ago, a community which arose from the small group of people sequestered together in institutions because they could not function in the hearing world, is diminishing. With anger and resentment, surely, but still diminishing. Technology has opened up other options, and many people with hearing losses can now leave sign language behind in order to negotiate their mainstream world with success. For my part, I don't know what I would do without the high-tech advances that connect me to my world - not just CIs, but email and the Internet and Skype and smartphones. (This deserves its own post at some point.)

Anyway, when I met my friend a few days ago she asked me if, sometime in the near future, I'd prefer she stop signing to me. I was startled. Despite the roaring noise taking over my skull, I hadn't considered the possibility that sign language could be no longer necessary between us. That it could become a relic of my past. But she was right; it could happen. "No, keep signing," I told her.

Similarly, I had coffee with another longtime friend this morning. He has gradually lost his hearing over the course of his life, and was worried that with the CI I would stop signing to him. He explained that a few of his deaf and hard-of-hearing friends have taken that path, and nowadays brush sign language aside because they only want to speak. Immediately, I saw a side of the CI debate that I hadn't fully grasped before. And it provides its own chaos, its own dilemma. What happens to those without CIs who are left behind? When their communal sign language declines, they must feel abandoned, betrayed, confused. Where do they go, when they want to form relationships, but when they can communicate with fewer and fewer people, however hard they try? The worst part of being deaf is this painful isolation and limitation - which I know all too well. What happens when your world becomes even more limited, when those who used to sign no longer do?

These questions surrounding sign language are complex, but my feelings are in line with what I've written before. It doesn't have to be sound or silence. Either-or. Regardless of what happens with the CI, sign language will hold a place in my heart that spoken words cannot describe. Many of my closest and most valued relationships have been cultivated in its presence. It has shaped my perceptions and the flow of my thought. It reassures me and allows me to relax, just as I imagine someone else might feel upon hearing the native accents of his homeland. Like all languages, it has a history and a personal significance that extends beyond its practical use. However far I dive into the world of hearing, I cannot let these things go.

Even as I take delight in the brain, in sound, and in technology. Since I'm still straddling that fence, I'd best find a comfortable place to sit.

3 comments:

  1. rachel,
    you have spoken so eloquently about the newness of hearing. I still teach kids that have hearing loss as well as language delayed kids.You give such pride and hope that many can learn from your experience. Many of us that knew you as a toddler can only rejoice in your knowledge and brillance. Judy walker shared this with me and I am so glad she did. May you continue to increase your world through sounds and be a role model to those that may be on the fence. Feel all the joy of your new world!
    Cookie Gillespie

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  2. Ah, you're finding out how eerily rhythmically you tap your foot? Its often somewhat syncopated...truly an amazing tic.

    I also wonder what my right-auditory center is doing. I wonder if my senses are any sharper (I did have 20/15 vision last time I was tested even though I should be ruining my eyes...good guessing?). I used to joke that I retain information well because the info get trapped and bounce around inside for a while instead of going in one ear and out the other =P

    The idea of you not "needing" sign is interesting to me too. I was thinking, I should learn some sign language to give her a break from having to lipread WITH annoying noises! we'll see how far you've gotten when I meet you next I suppose haha.

    Also, from an outsider-y point of view, ASL is fascinating for me. Like most cultures, it's got a lot to teach that shouldn't die out just because people are communicating in other ways. It's so demonstrative, actively using those small bodily cues we give off without thinking, transforming them into even more concrete meanings. It has a storytelling eloquence that can't be matched in spoken language, in which we have to prefix everything with "he said..." and connecting everything with "and" or "then" to signify progression. It's also wicked =P to be able to talk and sign at the same time!

    I know it loses a lot in the details sometimes, but it's pretty cool. Don't stop trying to teach us to sign either!

    Glad to hear you're doing better =D I love blogs, they're so fun to respond to.

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  3. Linda & I are so amazed at the growth you are going through. I am very happy at your success. with much love Chris & Linda Pfeiffer

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