Wednesday, June 29, 2011

Year One

Well. I've survived my first year with the CI. I can't quite believe it. When I went in for my one-year follow-up appointments yesterday, my surgeon walked into the room and marveled, looking at my chart, that time had passed so quickly. Sitting in that chair where I had sat, both when anxiously considering getting a CI and when anxiously wondering what would happen when it came on, I had to agree wholeheartedly.

So, one-year remapping with my audiologist: check. Speech recognition had improved since last time, and I felt more confidence in what I was hearing. Progress. At this point, the goal isn't necessarily giving me more volume - I've stabilized at roughly the point I was at six months ago - but optimizing the balance and input of the BTE to the electrode array. We stayed with similar settings to those I already had (same IDR and similar levels of stimulation), but already the changes have left me startled by the sound quality in my environment. Sounds that I'd thought were familiar (myself typing, myself swallowing, chairs scraping across the floor) seem to have shifted. They're different, more prominent, more raw. They feel new all over again. I'm wondering if this process is one that will never end - shaking things up, then stabilizing, then shaking them up again.

Perhaps so, because the learning curve continues. It might not rub my nerves as raw as it did last summer, but neuroplasticity doesn't come without breaking old ways and old molds over and over. If anything, that's what the last year has taught me, irrespective of hearing. I've experienced the world in new and astonishing ways, ways that had previously lay outside my realm of imagination, and I've discovered a flexibility and a strength and a curiosity that I didn't know I had. It's been quite a ride from that first day one year ago, that seemed so chaotic and that I remember so clearly. I'd like to reflect on it more fully at some point. But for now - a thumbs-up for hearing!

Monday, June 27, 2011

BEA Social

Yesterday I did something that's been on my agenda for a while: attended a local social gathering for Advanced Bionics' Bionic Ear Association (BEA), which seeks to connect and provide information to a network of CI users and candidates. In my area, these meetings take place every three months or so, and now the beginning of summer (read: a time in which I'm no longer tied down with being a full-time student! hooray!) has provided me with the perfect opportunity to branch out and meet other people with CIs.

In a way, what happened when I walked into that room wasn't entirely unexpected. I was the youngest person at the gathering by far (several decades at least), and one of the only ones who was prelingually, congenitally deaf. I was the only one who had gotten her CI after twenty years of deafness. Most of the other BEA attendees were fifty or older, people who had lost their hearing gradually or suddenly over the course of their lives. As such, of course, their CI stories were far more successful than mine. Having an established auditory memory, having prior experience with hearing, having been assimilated into the hearing world (rather than feeling like they had always hovered about its boundaries, as I have felt) - all of these factors had made a world of difference for their lives post-implantation. I had a bit of a sinking feeling as one older gentleman, looking and sounding and behaving almost entirely hearing save for the bilateral magnets on the side of his head, told me about using the phone perfectly by the third day after activation. The third day? The third day after my activation, I was about ready to put a bullet through my head! It was a rocky uphill trek through territory I had never before known or experienced. It was not, by any means, a gratifying return to skills long since lost. The gratification has only emerged slowly.

Still, there was a small - very small - subset of other early- or congenitally-deafened people at this BEA gathering, including one who currently wears hearing aids but was considering a CI. These people signed (whereas the later-deafened people did not), and I sat with them and chatted for a bit. Of course, as often inevitably seems to happen in groups like this, the conversation turned to the question of identity. Groan. One woman (who, I could tell immediately, was strongly culturally Deaf) turned to me and asked me which group I identify with, post-CI. Other people had said, "Oh, definitely still Deaf" or "Hearing!", but I sat frozen for a second before tossing up my hands and signing, "I don't know." I certainly did not consider myself Deaf a year ago, and do even less so now. But I'm still far from identifying with hearing people sometimes. I'm just happy with resisting categorizations, however much other people seem to like them. They make introductions easier, but otherwise they don't come to much good. Still, I was a bit haunted by the recurrence of that question, one year later (or twenty-one, depending on how you look at it). Who cares, I suppose.

All in all, meeting and talking to such people was a breath of fresh air in the sense of sharing common hearing experiences, but it also emphasized to me how very different each individual's journey with the CI can be. Personal history and intrinsic factors figure into the equation more than some people think. But chin up. I survived those chaotic first months. I am not hearing, nor will I ever be, but I'm doing so much better than I was one year ago. Yes, a cloud of doubt about my ultimate future limitations still hovers over my head - a cloud that seemed to loom a little bit closer after yesterday. But comparison to others is never the way to go for anything. This is my journey, and I'm going to make it on my terms and to the best of my ability.

Enough internally-conflicted talk. My one-year remapping is tomorrow, and that's a cause for celebration. From electric shocks to hearing and learning and experiencing and (!!) understanding, I think I'm going to walk around with a grin on my face all day.

Wednesday, June 8, 2011

One Year of Bionic

On this same Wednesday one year ago, I went through my last pre-op appointments, then sat and waited for the CI surgery that would take place the following morning. Killed time and waited. Went to dinner and waited. Made some nervous conversation. Went to bed and lay awake and waited. Couldn't sleep because of my mixed excitement and anxiety and dread. What was I getting myself into?

Today, after meeting with my auditory therapist, I walked out grinning. My one-year CI remapping will be in a few weeks, and although I've reached the point where I'm continually cranking the volume up on my processor, itching once again for more sound and more range, what I have to work with is pretty remarkable.

First exercise: open set of random sentences that I wasn't allowed to look at or study beforehand. I got half of them completely correct on the first try, and got large chunks of the rest (with some missed words or slight flubs on phonemes). My score: 75%, give or take, maybe even 80%.

Second exercise: minimal-pair drills with monosyllabic words, probably one of the hardest tasks for me since I'm literally listening for a difference of a single phoneme, while listening without any context. My score: 90%. Ninety freaking percent.

And the best part: while I felt confident enough throughout, I had one of those head-spinning moments afterwards when I saw the numbers. Why, hadn't I been guessing most of the time? Doesn't seem like it. My conscious mind keeps chugging along, but beneath the surface my brain is putting two and two together, all by itself.

I couldn't have asked for a better feeling compared to that nauseous sensation I had one year ago, while sitting in those hospital waiting rooms. It's been a steep learning curve, but with the CI my brain is clicking. It's starting to sprint along instead of stumbling. It's hearing!

Wednesday, June 1, 2011

What's in a Word?

Semantics. Connotations. Linguistic accuracy. What's in a name, anyway?

As someone who lives with a hearing loss, I've long struggled with how to label myself. Granted, when I was young, it was simple: I was deaf. (Disclaimer: little-d, not big-D. The divide, which occurs over culture and identity, is something that I won't go into too much here. Suffice it to say that I view myself as having always been removed from the Deaf community.) And, as someone who had that distinction clear inside her own mind, I became annoyed with the occasional insistence that hearing people had at calling me "hearing impaired." I always preferred the term "deaf" to that clunky, overly-politically-correct, disability-focused word. To an extent, the term can still make me bristle.

However, since my cochlear implant things have grown even less simple. I've discovered problems with calling myself "deaf." Is it really fair to use that term, when at this point I am hearing at almost a normal-range threshold? (Hearing, mind you, not necessarily understanding.) In a way, saying that I am deaf denies the progress I've made in learning how to hear. Moreover, it embraces a binary that hearing people, all too often, are too quick to embrace. That is, they have a difficult time conceptualizing what it's like to live with a hearing loss: they tend to think that it's all or nothing. Either you can hear, and understand everything, or you can't hear at all. The word "deaf" locks me at the far end of that spectrum - the end of the spectrum that I've spent the last 11 months trying to escape. Granted, without my CI I am literally walking in silence. I am still deaf. But, in the context of living in the world and talking and interacting and - whoo-hoo! - hearing, it hardly seems accurate to describe myself that way. "Deaf" doesn't acknowledge my everyday reality, and it gives other people misconceptions besides.

If I don't personally use "deaf" as a cultural term, and if I don't use it as a descriptive term, then what should I call myself? In the days right after the CI, when my whole life seemed chaotic and new, this question was the least of my troubles. But now, as I settle more into this hearing life and start to take it for granted, I've started feeling more conflicted.

First of all, I refuse to say that I am "hearing impaired." Besides the history that I associate with the term, I feel that it's not entirely accurate. I am hearing so well, and the CI has worked out so positively, that I can't call what I hear "impaired." The sounds entering my brain are there - they're just different from what hearing people hear, and I'm still en route to figuring them out myself.

Moving on. Deaf: feels habitual, feels comfortable, but is off the mark. Hearing: pshaw, no. Hearing-impaired: certainly not. How about "differently hearing"? Sounds awkward, and verges on euphemism. Atypically hearing, alternative hearing, hearing through a processor, hearing more than you think but understanding less than you think, hearing disrupted, hearing-but-interpretatively-challenged, in my own hearing world, en-route-to-alternate-hearing-universe...

In the end, I'm going to throw up my hands and call myself cyborg-hearing! (Kidding.) Or, at least, someone for whom the deconstructing effect of the CI has contributed to an increased resistance of classifications. Even if I still need a word with which to describe myself to all of those typically-hearing people.