Wednesday, December 14, 2011

From Lipreading to the Radio to Hearing

Earlier this fall, I was on the radio. Or, rather, my writing was! (Long story short: an essay I wrote appeared in an on-campus literary magazine, after which someone from the Stanford Storytelling Project, a radio show on the local KZSU station, approached me and asked if I'd be interested in reading it as part of an upcoming episode. Although I didn't want to read it myself - I didn't feel that my verbal reading skills would do it justice - I was flattered and more than happy to comply if someone else recorded.)

I shared the date and time of my radio appearance with my family and friends, but didn't actually listen myself. That is, until this week when a friend reminded me that my essay, now in MP3 format, did have a presence on the web archives. Here it is, at the bottom:

(Text version searchable elsewhere.)

A few days ago I pressed "play" and sat in my room while it filled with the sound of my words, in someone else's voice. (With transcript on hand, of course. It may be my own writing, but my memory isn't perfect.) As I told my friend afterwards, it was neat but it was also strange.

One thing people have often commented on regarding my writing is its pacing and acoustic flow. They've asked me how I've come to understand the metrical rhythm that is inherent to language without ever having heard it. Or they ask me if I hear my own thoughts or words in my head like hearing people do. I'm not quite sure. I don't know what it feels like to be inside someone else's mind, so how would I answer? Writing for me has long been a matter of feel, or of seeing the visual balance of the words and their accompanying rhetorical devices on the page. Thinking about writing, or about words, likewise happens on that almost-unconscious level of feel. I touch words more than I hear them. I grasp their texture and their shape as they pass by, and although some of this might be related to sound it would be reductive to narrow that process to the physical property of hearing. I do gauge how my words unfold in terms of timing and rhythm, but on the whole rhythm isn't directly tied to sound. It's a more deeply-engrained property of the body, for me long associated with physicality.

Hearing all of these things, in the form of actual sound waves, was a remarkable experience. I won't say that listening to my essay made it feel more real to me, or anything like that. It didn't. Writing, for me, will always exist in the mind, in the life of the mind and its particular moods and flavors. But I still enjoyed accessing how the texture and affect of my prose translated into sound waves. And did experience a bit of a surreal moment, besides, when my mind made the leap from content to form: lipreading to the radio to hearing. It forms a nice little circle, doesn't it?

Monday, December 12, 2011

Mass-Generated Mumbo-Jumbo

The long-engrained habits of my own brain, as well as the challenges that those habits create in structuring a new auditory model of the world, is something I've been meaning to write about on this blog. (In a nutshell, it's the story of my current stage of listening.) But it's also something that I've written about before, so in favor of a different topic that strikes me as more immediately interesting, I'll bypass it for another time.

I had someone ask me earlier this week about the CI: my progress, whether I'm still happy with the decision, etc., but also about my recent ability in social situations. That last one was the trickiest for me to answer. While my level of environmental awareness and, subsequently, the sensory richness of my world are unbelievable, I still can't help but wish that that impression of auditory texture translated better into the specific fine-tuned connections that would help me more with human speech. Don't get me wrong: my brain is figuring it out. With a single speaker in a quiet location, I'm often surprised and gratified at my ear's ability to fill in the gaps, ease the pressure from lipreading, understand, and, well, listen. But, unfortunately, the world does not operate according to the norm of a single speaker, speaking one at a time, in a quiet location.

As a full-time student, I've reached the point in the academic term when my energy reserves are rather low. Those reserves are already reluctant enough to contribute themselves to (my admitted phobia of) group interaction, but in recent weeks they've been all but shot. And, today, I was wishing that I had a mental typewriter to record the verbal nonsense that my brain sees/hears/juggles on a regular basis. It, reconstructed, goes something like this.

A: Yeah, you know, I was thinking eoriwudn seriuesof ghjldf eirojdf. And it's problem sets and papers and erieosf reuesonf eruelsgh.

B: That sounds really tough. Eeriosdncs eoirslfn and you know vneowri but erouewo it's not so bad boerusor.

C: Askrjejf sdifuseorjf sdfiusd at three o'clock. Ersdnvfoer eruilsbr one of my friends said that eriowehjf qweurs but then I told her erous erwyn oweur. She wasn't very happy.

A: Twoeru sdfbero this afternoon eoriueo and oweur.

C: Awwww.


A: Dsfkjfls the Fiesta Bowl? Erwoeiur seruhesf vnvlee.

B: No, I'm not going.

C: I am.

D: Dfskj sieru stijsjf sdfjsldfj!

A: Where are you staying? I was thinking I would sdklfjs pfgoihf seriulkj ofgihfjdfh. And then fly back seriuoenf drtiurd fly out of zeiruoes portiren before coming back to school.

D: Yeah. Eroewur sdfbe that sounds like a good idea. Have you heard of erouwel seruro vboer?


C: One time kweridsf dfguorgj eriuefmdl I was on a plane, and eriouwefj sdhfdnf piruoe guy checked my luggage, and then - and then -

B and D: laughing

C: Yeah, I know right, eriweuor vwryeiwnf this stewardess was just srehyweknf ierwekfn and then I got home and my mom looked at me and said seriouewlf fdghdorgn esrueyifhn upoertjlnwe.

A: I did that one time. It was when xerieuosf erouewly eriejof roriuweon.

D: Rwriuweaolf qoweui sdfnselr but he said sadfnsoer rsoweroj.

Me: silence

[Chewing, mumbling, accelerated speech, overlapping conversation interspersed throughout]

Is it any wonder, sometimes, that I just walk away? (I need an iPhone autocorrect to revise all these jumbled words.) Even if they all spoke perfectly in turn, the flow would still be challenging. Whatever my discoveries with the CI, the reality is still a little bit sobering regarding social interaction.

I'm looking forward to some good old-fashioned sign language conversations over the holidays. Or at least some familiar voices to listen to and challenge my ear with - in quiet houses and living rooms, at that!

Friday, December 2, 2011

World's First Waterproof Sound Processor

Advanced Bionics just issued a press release about its new waterproof Neptune sound processor.

Since the days when I was a kid and communication really didn't matter in the face of fun and games, I've disliked swimming and hanging out in water (at least, with people who don't sign) because the knowledge that I will be totally deaf while in the pool,  playing at the beach, etc. is just uncomfortable. If there's the slightest risk that I'll get my CI or hearing aid wet, I just go without - meaning forfeit my hearing. To this day, I have absolutely no concept of how things sound underwater or in watery environments. (I still have memories of being coerced into playing "Marco Polo" in the fifth grade. The other kids loved it because I of course took forever being the one underwater. To this day the notion that I even participated seems laughable.)

And having the option of not wearing the processor behind the ear - how wild. Except maybe a few rare days of being sick in bed, I've never gone a day in my life (since way back when I was diagnosed with my hearing loss) without some hearing device perched on my ears. I feel naked without one.

The design does look strange (a disembodied, futuristic-looking box instead of something clearly designed for ears), and I've been perfectly happy with my Harmony processor, but for me the concept of the Neptune is intriguing. And so, so cool. And common sense. I'm happy that AB is taking steps toward solving real technological barriers that have existed for deaf people for decades.

In a nutshell: even though I'm not a poolside kiddie anymore, I want one. Sort of.

Friday, November 25, 2011

An Evening With David Sedaris

Another recent hearing experience I've been meaning to write about (though it's been several weeks now) is the chance I had to go see David Sedaris read on campus earlier this month. Hey, it's never too late for reflection, right?

As soon as I heard Sedaris was coming, I knew it was something I didn't want to pass up on. But, even as someone who's big on writing, I'm not the biggest fan of going to author readings. The auditory experience (of hearing what a piece of work sounds like, or what interpretation the writer casts on it via his/her style of reading) has never been there for me, and I'd rather read the short story/poem/essay/etc to myself. There are few things more frustrating, both for me and my ASL interpreters, than trying to fully access a piece of work when the writer is reading briskly from the page, complex metaphors and imagery and diction and all. Even the most skilled interpreter, without the chance to rehearse extensively, has to work very hard to deliver an accurate translation/transliteration of a written work. Without relapsing completely into the abstract grammar and conceptual structure of ASL, that is. I hate having crisp verbal concepts from written English get lost in translation that way - after all, isn't it the English version that I'm interested in, that I've come to the reading anticipating to contemplate? My interpreters know this, and I'm always impressed by how well they do in trying to satisfy my literalist, straight-from-the-page tendencies. Still, oftentimes the easiest solution for me (and them!) is to get my hands on a written transcript of what the writer is reading, and just access it that way. Even if this in itself raises complications: if I'm taking the time to attend a reading, only to look straight at the page instead of the verbal performance, is it worth it? Might I just as well read that material at home to myself?

Now, I'm not going to say David Sedaris's reading was a sudden breakthrough in my history with author readings. It wasn't. But it was a big enough event for me to put aside my usual misgivings and go. (I've been trying to do this more often in recent months. Maybe part of it is conceit. If I can't access the full impact of what David Sedaris or another big-name author was saying, and how, then at least I can say I've seen David Sedaris.) And, combined with the fact that Sedaris was my first experience with trying to listen to comedy, I walked away with some interesting insights.

It was a full house in the on-campus auditorium where Sedaris was speaking, and I arrived at my seats in the front row to find my interpreter team cramming over copies of his essays to be read that night. (Apparently one of them had gone up to get his autograph beforehand, and when she let it drop that she was an ASL interpreter, he promptly insisted on letting her read over his material, apologized for not knowing there would be interpreters and providing copies in advance, and promised not to make any cheap sign-related jokes. I've seen too many of those, so props to you, Mr. Sedaris.) Apparently the preparation helped, for both interpreters zipped through Sedaris's essays and off-the-cuff remarks without any problem. It helped that his speaking pace was moderate; never did he rush ahead or get lost in his own flurry. Even when the crowd was roaring with laughter, he'd only give a small grin at most, take a breath, and move on. His material was lively, his essays provocative, and I walked away having had a good time.

But... there was still something I didn't get. There was still a sense of personal distance that hovered over my entire experience of the night. I think most of it had to do with the fact that, regardless of how skilled my interpreters were, I was still the one watching.

"His voice is just funny," one of my interpreters slipped in as Sedaris started talking - one of those side comments that they sometimes give me, to help me access the full context of what is going on. As soon as she told me that, I tried to pay closer attention. I cranked my CI up. I watched the sign language streak by, but at the same time I tried to hang onto Sedaris's voice, to understand exactly what gave it its comic effect. And, although I was able to match what I heard with what I saw, it was still just a voice. What made it funny? "He sounds almost like a woman," my other interpreter said after the event was over.

"Is that what makes him so good?" I asked her. "Is it the way his voice sounds?"

"He has such a unique voice," she told me. "It's really weird. I can't describe it - it's just weird. It's a great radio voice. You hear it and you can't stop listening."

I still didn't get it. I have no conception of how someone's voice can be alluring, mesmerizing, funny, or any of those things. Or if I do, it's on a very superficial level. I've noticed that, in everyday life, there are some voices I like more than others, though I can't say why. I've started recognizing some people's voices, at least once I identify the speaker and confirm my own subconscious expectations. Regardless of whether I like a voice or not, however, that's all the subtext I ever associate with it: like or dislike. I understand the concept of inserting emotion into your voice when speaking. I do that myself - it's something I take some pride in, that even before the CI I understood how to inflect my voice when I asked questions, and how to express surprise and sarcasm and excitement and flatness at will. (Even if I'm just about the worst storyteller because of my inability to achieve them in more complex combination.) To be honest, though, I associate verbal nuances more with facial expression, body language, or other subjective context. They're not something I can discern from listening alone.

So, back to David Sedaris. Throughout the night, I would hear the crowd around me erupting at some remark  he made. Afterwards I had a few friends tell me their sides hurt from laughing. But, other than a chuckle or two, I didn't laugh very much. First I'd hear the laughter - hold on, wait for it, something's funny. Then, after the slight time lag from the interpreter's end, my mind would race, converting the words from sign language to English. Finally, I would review what I'd just seen, and usually grasp what could have been interpreted as humorous in that sentence. But note the passive voice: I reviewed Sedaris's humor as an observer of that humor, not as a participant in it. The timing, for the most part, was lost on me. The words weren't uproariously funny in and of themselves, I wasn't hearing them, and my steps of mental translation seemed to whisk me out of the immediate moment in which comedy occurs.

This detachment doesn't happen to me as often when I watch movies or hold everyday conversations, in which more visual input accompanies the auditory. I left the reading distracted by the questions spinning through my mind. Yet again, what makes listening to someone funny? What's in a voice, anyway?

Only a few days later did one of my best friends give me an answer. "The read-out-loud aspect," she said, "is like being tickled. It strikes you differently when the timing and delivery are out of your control." Her simile made sense to me, at least cognitively. That's what I had been missing.

I still wonder what it would be like to hear it, I really do. Although I guess I'm not ticklish either...

Saturday, November 12, 2011

Addled by Arias

I haven't written on this blog in forever. And some people (friends and loyal readers) have been asking me about it and about the CI. What's new? Yes, I'm still hearing. I'm still progressing. The time is overdue for an update.

Honestly, there are a number of things I've intended to reflect on for several weeks. All those reflections need is time. I'm at the stage in my listening journey where things are a little different. The mood has changed, and no longer am I suspended in tension and rapid-fire auditory discovery. I don't feel like my head spins in astonishment anymore as I walk through the world. All this has become, dare I say it, normalized. Or almost. I still have my moments, but the fact that I'm taking more and more things for granted is a mark of success in itself, isn't it? I don't think my progress has slowed, exactly. It's more that I've reached a place where I no longer have so much novelty to reflect on from day to day. The learning curve seems to have gone underground. Most of what I'm learning is unconscious. It's a much better place to be, really, but it does have its hazards.

More reflection to come soon, but for now I wanted to take the time to recount something more immediate. This past Wednesday I went to the opera! I put an exclamation point there because whenever I do hearing-person things like this I just smirk. Up to San Francisco we went, dressed up and ready to see Bizet's Carmen, and inside my head I kept laughing. Don't you see, I wanted to say to my peers (this was a dorm-organized trip). deaf person is going to the opera with you! This didn't seem to strike any of them as odd (of course), and when we reached our seats way up in the nosebleed section I was just another one of the group. Now, my thoughts about opera now are less extensive than the first time I experienced it last summer, but here's what I walked away with:

1. Operas are long. Duh. But, more than being long, they draw on in seeming pursuit of the suspension of a moment, the definition of a mood through setting and music. It's an almost nostalgic form, in that you can see the present (and its accompanying cause and effect) slipping away from you even in the course of its happening, and even despite its elongation. Even if, after a few hours, all you want to do is truncate that elongation and have it be over.

2. Following the above observation: I'm an English major in college, which means that on a regular basis I spend too much time thinking about words and verbal narrative. The overall narrative structure of the opera bored me a bit, because honestly its complexity and its pacing seemed pared down. But here's what I wondered: is the operatic format one that seeks to augment this storytelling structure with the presence of music? Is music, and not character or plot or language, the main point of the opera? Probably.

3. I've enjoyed symphonic music in the past, and I still do, but I had a difficult time maintaining my interest in that music while also following a storyline. My mind wanted one or the other: give me a novel or a story or a play, or give me a symphony to listen to. I couldn't seem to find a comfortable place to settle in between. Also troublesome was the fact that of course Carmen was sung in French, but the supertitles were in English. I experience a strange sort of auditory disconnect when what I'm hearing doesn't line up with what I'm seeing. Sight is still by far my dominant sense, and when I don't encounter sound as an affirmation or a reward, that sound tends to become less interesting to me. I oftentimes end up ignoring it, to be honest.

4. I would have seriously loved someone there to explain the mechanics of the operatic sounds/music/singing/etc. to me, or at least to pinpoint its intention and mood. I'm still not very good at understanding the "feel" of a particular piece of music (mostly because, probably illogically, I want to know what it means) and I wondered what I was missing in terms of tone and ambiance. It sounded nice, and some arias sent chills down my spine, but... well, on my own I'm woefully incapable of saying anything else.

Overall, at the end of the night I walked out having enjoyed myself, happy that I'd had the experience, smug that I'd heard it and hadn't been bored out of my mind, but still feeling uncertain of what it was I'd witnessed/heard and its significance. Maybe it's that I was out of my element musically, but I think it bothered me that I couldn't say whether Carmen had been good or not. The story? Not so much, in my opinion. Too little pacing and too little solid character and too long to get through it all. But it had to be more than that; the overall performance wasn't just about what happened on stage. And my judgment, my listening, and my knowledge was way too insufficient to gauge that.

This last point hit home for me yesterday afternoon, when I ran into a friend on campus who asked me if I'd gone to see Carmen on Wednesday. (She'd heard about the dorm trip.) "Well, how was the performance?" she asked. "I was thinking of going."

"It was good," I said. And... that was all. I honestly couldn't say anything else. Going beyond that would have delved into the realm of I-was-hearing-this-for-the-first-time and this-was-my-first-real-opera and it-sounded-good-but-I-don't-really-know and... argh. A typical hearing-person answer, I imagined, would have been something like, "The symphonic accompaniment was really top-notch and the sopranos gave a stellar performance, especially what's-her-name who played so-and-so and has such-and-such kind of voice, although the tenors were a bit creaky, and I really loved so-and-so's expressiveness and vocal power as Don Jose." But what do I know. This was my first moment of being asked to judge something acoustically and totally laughably failing. Which, hey, is to be expected. It just made me feel unsettled and inadequate.

So, the real question: do I like opera? In bits and pieces, yes. The purity and drama (or whatever it is) of the sound appeals to me. But my overwhelming sense of not being able to understand it at all, and wondering if the essence of the performance is beyond my comprehension even with a CI, lingers with me. I'll need to chew this one over.

Saturday, July 16, 2011

Do Not Compare

A major part of my CI experience right now is keeping it all in perspective. Within the spaces of my own mind, this is easy enough. I still haven't gotten over my sense of wonder at, well, hearing. When I am alone, and when I use myself as my only marker, I never fail to be pleased - and astonished. The CI is rewarding every moment of every day, and even moments of frustration are tinged with a gentle ironic humor. Isn't this all wonderful?

When my gaze wanders outward, however - when I, like all other human beings tend to do sometimes, start comparing my private progress with the abilities of others - then I do start feeling the true sting of disappointment. I start thinking about what hearing people can do, what they've been able to do all their lives, what they take for granted. What other people (not prelingually deaf) have been able to achieve with CIs. What I've striven to accomplish, but what my brain is not yet able to process. I start feeling restless, agitated, even a little bit self-accusatory. Why haven't I grasped all this yet? Why does sound still sometimes feel garbled, overwhelming, or otherwise make no sense? Why am I back here, still taking these baby steps, while my peers still sprint off toward the horizon?

Stop. I have no right to do this. It's my journey, not theirs - and, if I can't take pride in this, knowing full well where I'm starting from, what is there that I can feel accomplished about? Do not compare. In hearing as in life. It can be hard, watching my hearing friends do things so effortlessly, and then feeling like those things should be closer within my grasp. But should be, according to whose standards? Maybe not mine. And so I try to reserve judgment on myself. That won't do anyone any good. I try, instead, to think of things like this.

I discovered the other day the sound that even finely grained salt makes when it rolls out of its bag to refill the shaker. Simply beautiful.

I went to a meeting at work this past week, in which I sat across from someone's desk and was able to understand him despite terrible lighting, and was simultaneously able to catch the "okays" or "that sounds goods" of another person sitting to my left.

I braved a public event last weekend without an interpreter (gulp) and found that, although I was exhausted by the end, I was able to listen to and watch an incredibly fast-talking speaker and walk away having understood 80-85% of what he said. Score.

In calling my parents on the phone, even despite saying "what?" or "say that again" dozens of times, the instances in which a word sequence rolled out and I understood, perfectly, felt like reaching across a thousand miles to hold a familiar hand.

Earlier this week, I rode a horse and was able to catch some coaching from the ground, listening and processing at the same time as I directed a living, breathing thousand-pound animal. Talk about multitasking.

These are the things I try to focus on. The things that give me pure, honest, undivided pleasure. Looking at my life through my eyes, judging it by my standards. It's not any harder than that, is it, really?

Saturday, July 9, 2011

And the Horizons Creep Outward

Ahhh, there's nothing like a remapping to push one's boundaries. During the last week and a half, I've felt like someone who's been knocked slightly off balance, or who has found that the ground beneath her feet is shifting and undulating. But as I reorient myself to the changes in my auditory input, I find that my current sound quality is better than before. Sounds that had been driving me bonkers for months, or growing steadily more annoying, are much more manageable. And I've noticed new sounds, or continued to progress with new auditory developments that have emerged only in the past few weeks. Here are a couple:

When riding my bicycle or riding a horse or driving with the car window down or otherwise traveling at speed, I'm no longer distracted by the ROAR WHOOSH GRAWWLL ROAR RUSHHH of air blowing past. That sound is still there, but it's not as harsh or grating, and it doesn't drown out everything else. Thank goodness. I was starting to tilt my head when I rode my bike if only to avoid my ear facing directly into the jetstream!

In the absence of those air-blowing-past noises, I've noticed new sounds when I'm active or on the go. My bicycle chain clicks (okay, I should probably oil it). My brakes squeal. My backpack groans on my back, ice rattles in my water bottle in my bag. The car makes finer and more unique acceleration noises than I ever knew. My saddle creaks so, so loudly, and creaks in different ways and at different tempos depending on what gait my horse is traveling at - how did I never notice that before?

A few of my friends have car GPS navigation systems, and I've been amusing myself to no end listening to the robotic voices speak as we drive. "I recognized that street name!" I'll say, or "Turn left, turn left! It said turn left!" Earlier today I found it funny when the GPS kept crying, "Wrong turn. Wrong turn." Having that disembodied voice suddenly take on meaning was, for me, wondrous.

I've had the chance to visit the ocean twice in the last few weeks. While sitting on the shore, I've realized that this is the first time I've heard waves. I knew from reading books that they were supposed to roar, or crash, and admittedly I associated unpleasant things with those noises (or adjectives). But, in reality, when I looked out at the blue plain of the sea and saw the cresting foam and the receding swells, the accompanying sound was one of the most rhythmic and peaceful that I have heard. I could have listened to it all day, and I suddenly realized why people record the sound of the sea to play in their houses, or to lull themselves to sleep (that always seemed weird and fetish-like to me before). A friend and I jumped up and down, looking at each other and grinning, when we both realized that that sound I had been wondering about was the sea, and that it was completely unexpected and completely new.

People's voices seem louder than ever, even from far away. I keep noticing more often, with my back turned, when people whistle or grunt or exhale or sigh. It's startlingly invasive, startlingly intimate. And pretty awesome to note: I've been picking up, more regularly, greetings called to me when my back is turned. "Have a good day" or "see you later" - when people say these things to me as I'm walking out the door, without thinking that I'm not looking at them, I'm able to understand and reply, without looking over my shoulder. Every time I smother a grin and bask in a private sense of triumph. How much of this was lost on me before? Now, in such situations, how normal I must seem. Whoa. And while my speech comprehension skills continue to progress in quiet controlled situations, these sorts of real-world breakthroughs give me the hope that, someday, I will be able to broaden and apply those skills in a more general way.

Old sounds: these aren't quite unexpected or new, but they're different. When I inhale and exhale, it sounds gentler and smoother than before. Typing is more crisply defined (but not the dice-rolling-Las-Vegas-gambling-casino-annoying noise it was last summer). When I brush my teeth, I can hear the sound change based on which angle I'm directing my toothbrush - it's very dynamic. I can hear when I shift about in my chair, or when fabric slides against fabric, but again more gently and - I don't know - subtly. Plus there have been a few unidentified noises that have jumped out in my apartment in the last few weeks. Clicking and weird popping and such. I've tried to hunt them down, but to no avail. I need a hearing person with me at all times!

Finally, I feel like clarifying something that has been a common misconception among friends and other people who ask me about the CI. At this stage of my listening progress, when I go in for a remapping, I'm not just getting the volume turned up. Not exactly. The volume input I'm receiving right now is right around where we want it to be. It's stabilized. While I would theoretically be able to tolerate more, turning it up would interfere with clarity. So, when I go in for a remapping, it's literally giving my neurons a different "map," or balance, or picture of sound to work with. My brain is adjusting itself all the time, becoming gradually more familiar with noises and frequencies it never heard before. To keep this learning curve stabilized, it's necessary to go in and rebalance the frequencies my brain gets from the CI. That way, sound perception remains more accurate. It's not necessarily louder.

That's a rough layman's description, but it should do. I'm still learning about this entire process myself. Now, on to more noises and more practice!

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.

Saturday, May 14, 2011

A Meeting With Mahler

Last night I went on a grant-funded trip to the San Francisco Symphony - something I couldn't have imagined myself doing a year ago, much less enjoying. This was the first time I'd ever been to a symphony or to a large concert hall, although I think I once might have been dragged to a orchestral performance when I was little. (In which I sat, bored and frustrated and fidgety. Nothing about the actual orchestra stands out in my mind, only that sense of interior confinement and angst.)

Needless to say, this time was different. It's now been almost eleven months since I got my cochlear implant (how does the time go so fast?), and the sense of curiosity and bravery that I now have about trying new sound-oriented events is, I think, one of the best outcomes of that journey. Walking into the symphony, I did not worry about what artistic impression I would grasp or how I would sit through it for an hour and a half. I did not worry about being excluded. I just went, feeling eager and admittedly a little bit proud to be able to experience it with everybody else. When the music started, I leaned forward and watched - and, more importantly, listened - for a span of time that seemed to fly by but also hang suspended in the eternal expansion of a moment.

I regret to say that what I heard, I lack the vocabulary to describe. The language of music lies beyond every form of language that I've learned to use. All I can say is that I liked it, was borne aloft by it, even, although I cannot say why. The symphony in San Francisco was playing Mahler's Symphony No. 6, and as the first movement started I felt the usual sensations that I feel when trying to settle into a piece of complex music. I twiddled my CI volume, trying to get it exactly right as the notes settled into a whisper and then swelled, almost knocking me back into my seat with their sudden energy.

Volume set, I listened. Or tried to. My mind, as usual, got fidgety. My gaze roved about. I studied the people sitting in front of me, looked at the architecture and the patterns on the ceiling. I tried to count how many symphony players there were, to see when their instruments were coming in and out. I thought of the most off-topic, improbable things. It wasn't that I was bored, or that the symphony failed to hold my attention. It was that, once again, I'm simply not used to surrendering my thoughts to listening. My mind clings too strongly to the visual and the imaginative. It is too used to amusing itself when the auditory information of the world goes whizzing by. Anything to do with sound still feels foreign.

But, finally, about an hour into the symphony, I felt those old habits starting to loosen their grip. (I shake my head that it took that long.) The mental fidgeting stopped, and I relaxed into the music. It struck me that I was being transported to the fringes of a different state of consciousness, or of thinking, which was the same state of consciousness that the conductor and all the players must have existed in. The symphony seemed to draw collective breaths before my eyes (or ears!), to flow from one section to the next like a giant living thing. It exhausted me to think of playing an instrument for as long as they did; I thought of the physical precision, the mental sharpness of timing each note to merge with the rest. Yet the players kept going, tirelessly, the conductor breathing energy into their efforts like a bellows. I did not want it to end. It seemed that it never would or could.

When I stood up to applaud like the rest, I only wished I'd been able to summarize what I'd heard. But the symphony had taught me more about music than I'd known walking in the door: I now could pick out when various instruments came in, or slightly anticipate the feeling that linked one section to the next. I'd learned to have my interest piqued by auditory surprises (such as when someone rang a drum that looked like a large sledgehammer and made me jump). Most of all, I realized how much I enjoyed the (for lack of a better word) organic feel of this kind of performance. Not only did I enjoy listening - I also enjoyed watching, soaking in the atmosphere, being there. On the way back from San Francisco, when the people I was with turned on rock music in the car, it just wasn't the same.

Wednesday, April 20, 2011

The Black Box, Revisited

This brain business is freaking me out. I’m wondering how much more complex my mind is than I consciously realize. Today I had another auditory therapy appointment, my first since last quarter, and while I walked away feeling excited, I also walked away feeling unsettled. What exactly is going on inside that black box that I don’t understand?

To offer a quick recap: my therapist and I sat down and discussed my progress over the last month or so, then proceeded to listening exercises that I’ve done a few times before. Throughout, she commented on my growing confidence and poise with listening, or at least my growing willingness to persevere with deciphering what I hear. To paraphrase her words, she told me: “Your entire life, you’ve had to hang back, to resign yourself and say, ‘I can’t do it, I can’t understand this.’ You’ve felt constantly unsure and you’ve grown used to being cautious as a result. Now you have this wonderful new tool that helps you engage better, and you’re learning how to overcome that hesitation that you’ve grown used to.”

How true, not only for me but for anyone else with a hearing loss. And how nice to have this perspective articulated so clearly. Disengagement has been a survival mechanism for me for so long that it’s hard for me to commit my brain to listening, to trying to piece the sounds together despite having less than ten months’ experience with this auditory mess. The words streak by, not making any sense at first, that old response kicks in and I think “I can’t do this! For heaven's sake, I’m deaf!” and then I get overwhelmed and implode and my mind switches off. I don’t do this intentionally, I don’t think. It’s not that I mean to give up. It’s that habit (by now, almost instinct) tells me that my efforts will be futile and that trying isn’t even an option. Spoken word gibberish soup, again. So much for that.

But when I do try, strange things happen. One of today’s exercises dealt with listening to a simple sentence involving two words: “Please pick up (food item) and (food item) from the store.” Old hat, this exercise, even while the words to engrain in my auditory memory seem limitless! Some of the food words, I’d heard often enough to get right away, such as hamburgers and French fries. Others were more unexpected, and when my auditory therapist saw that I wasn’t getting them she would switch to verbally describing them to give me clues, instead of either 1) repeating the word over and over again while I got progressively more frustrated, or 2) throwing in the towel and telling me the word outright. This backroads strategy is one that she’s used from the beginning, to force me to listen in the context of language. It’s also very hard for me right now. Remember, I’m listening to full-bodied descriptive sentences without lipreading. Talk about a jump up!

So, today I sat and listened to her describing this unknown word using other unknown words, the sounds piling up and toppling over and burying me in their rush, and while I couldn’t have told you what I was hearing I also wasn’t completely overwhelmed. This time was different. The words going by sounded like English words, they sounded like language. They sounded comfy, like they could have been my friends. Even if it was impossible for me to say exactly what they were, at least after the fact – I felt more like I was brushing each one of them as they passed, but not strongly enough to sink in my hook and reel them in. Once in a while, one or two would jump up and I would grasp a fleeting phrase, but then struggle to hold on as the stream continued. “This is a… breakfast… You use it to… and it… green…” Other times, I would rustle against individual sounds but couldn’t think fast enough to assemble them into words.

Yet, out of this ghostly, translucent chaos, some sort of picture emerged. The first time this happened, I listened to my therapist’s stream of speech, sat there subconsciously ruminating, and then said, “Yogurt.”

“Very good!” she told me.

“That’s really what it was? Yogurt?”


How did I ever get that? All I’d heard, at least consciously, was something about flavors and strawberries. Impossible, for my brain to make the leap from that to “yogurt.”

But then it happened again. The word in question: zucchini. I listened, gathered that my therapist was talking about a long and green vegetable, but instead of searching through my mental food vocabulary to find something that fit the bill, the word popped up and came to me right then. I knew. It had been there all along, beneath the surface of my brain, but hesitating and not knowing how to fight its way into conscious articulation.

And again. Something about cutting and breakfast and sugar, only half-grasped and feeling like a murky dream: without a doubt, it must be grapefruit. I wasn’t assembling clues, because the clues themselves hardly made sense. Unless they were assembling subconsciously, just like everything else?

Whoa whoa whoa, wait. What the eff is going on? I don’t get this. How can I so definitively say something, based on so little (read: almost nonexistent) proof? Unless the proof is there in abundance, somewhere deep within that black box, and I’m not capable of realizing it? What determines whether the sounds click together to make a word or whether they don’t? How can all this be happening without the conscious input of my work ethic or deductive reasoning or problem-solving skills, but based only on my willingness to sit there and listen to and accept what seems like chaos? How can my brain be so resourceful, all by itself and seemingly without me?

And, at the same time, how amazing is that?!

Thursday, April 7, 2011

Breaking Through the Jargon

In the last couple of weeks, I’ve had a few interesting experiences with appointments: among others, visits to the doctor and the dentist. All have emphasized to me how I continue to progress with my CI (even if, again, I don’t feel like I’m progressing).

Now, I’ve always hated going to any sort of appointment by myself. The reason, I think, is fairly obvious. There are too many people to adjust to for lipreading, too much important information to catch (especially with medical terms! oy vey), and too many details that too easily slip beneath my notice. Up until the time I left for college, and even past then, I always took a parent in with me for any kind of appointment, just as a safety net. That isn’t an option anymore. Nor, really, is requesting an agency interpreter to show up for every little thing – I’d consider that in a dire situation, but as someone who sometimes feels like she spends a quarter of her life scheduling interpreters in one way or another, I’d rather cling to my sense of freedom. As well as personal privacy.

Appointments aren’t the highest item on my worry-o-meter, but they’re pretty high. So, in the last month, I found myself pleasantly surprised when I visited the dentist and heard the technician say, “Now, I’m going to floss your teeth,” as well as some other things I don’t remember. When I went to see the doctor, she slipped behind me and (without meaning to, I’m sure) spoke from where I couldn’t see her face. “Take a deep breath,” she said, placing the stethoscope on my back. And I understood! If only she knew how much time, hard work, anxiety, joy, and pride had gone into that one breath I obligingly took. Other things, like “I’ll be right back,” “Just step this way,” and “Very good” also stood out to me, like tiny rays of light against a murky gray surface. Falling like candies into my hand.

I still might not be perfect, but when my CI steps in like this it assures me that I will be okay, that I am capable of figuring out routine hearing-people things like going to the doctor by myself. But still – every time one of those tiny comprehension moments occurs, I am so, so stunned. I never get used to the feeling of how easy understanding is during the moments where things fall into place. (Even as I type this right now, I’m grinning uncontrollably.)

Dear readers, are these tiny moments getting redundant or boring yet? Of course not! For me they never will, because I cannot ever imagine myself taking them for granted.

Thursday, March 24, 2011

The D-Bomb

I’m never quite sure how to drop it, or when. But I need to figure it out.

By “it,” I mean the question of telling people I meet that I'm deaf. I’m not exactly like them, I can’t do certain things, and specific accommodations need to be made for me, but I also want to be clear about the abilities that I do have and to avoid making the hearing-loss issue intimidating. It’s a quandary that, post-CI, I still struggle with. How to be clear, straightforward, approachable, fair, but yet realistic?

It’s a tricky challenge with no one-size-fits-all solution. Sometimes, at the outset of a conversation or a relationship, dropping the “d-bomb” simply isn’t necessary – or relevant. When applying for a job or internship position, no way am I going to mention it. Why should I, when it doesn’t at all affect my qualifications or my ability to perform? Starting every introduction email with the disclaimer, “By the way, before you decide how to interact with me in the future, you should know that I am deaf” – that’s not an option. It’s selling myself short. I refuse to let one aspect of my identity define my every interaction. In pursuing my real-world activities, I am a student, a reader and a writer, a hard worker, a participator, et cetera, first. I begin long-distance interactions simply as myself – which of course brings up the interesting question of how my deafness fits into this holistic sense of self-identity. (Messy question; not going there.)

However, when the time for an interview rolls around, or when I find myself about to (gulp) actually meet the individual with whom I’ve been corresponding, I need to decide what to do. In the past, I’ve tried both approaches. I’ve stayed mum about the d-word and showed up hoping that the situation won’t escalate into something unmanageable, and/or that my lipreading skills will be able to save me.

(Sometimes, that’s worked beautifully. Other times, I find myself reeling and backtracking, trying to explain away the minor snags that have suddenly turned into ogres. It depends on the person and the situation, it really does. If I bring up the deafness issue with some people, I look back afterwards and wonder why I made it such a big deal. Why, it really was irrelevant. Other people, however, need to be slammed over the head with it before I feel like I can approach a semblance of my normal ability to function.)

Or, I’ll play my cards straight before I even meet this person face-to-face. Deep breath. Time to let the cat out of the bag. I’m embarrassed every time it happens, for whatever reason. I suppose because I’ve succeeded so far in my life goal of Interacting Normally With Hearing People, and now I’m about to voluntarily set myself apart.

(Interestingly, this approach of prior disclosure is also successful, or not, depending on the person and the situation. Some people, if they’ve been given time to ruminate over “Ohmygoshshe’sdeafIdon’tknowwhattodo,” come to pieces in the actual interaction. They’re more nervous than I am, they overenunciate, they question themselves, and so the entire meeting becomes damage control on my part, trying to reassure said person back to the impression-of-hearing-person-normalcy that they had before. Other people, however, simply appreciate the heads-up. I’ve had several surprising situations arise where I’ll meet someone who unexpectedly knows some sign language or who already has deaf friends or family members – if I hadn’t mentioned my own deafness, I wouldn’t have received the gift, so to speak, of being able to interact on this level.)

The d-bomb is troublesome even in casual interactions. Sometimes I’ll be out and about and meet someone new. He or she is easy to lipread, and so we settle into a comfortable conversation without me ever bringing up my hearing loss at all. I’m enjoying myself when this new hearing companion does something that does not adhere with my version of reality, such as saying “Give me a phone call!” At that moment, of course, I have to break the mold, bring my deafness out of the closet, and say, “Whoa, hold on.” And then, of course, the situation feels awkward because I hadn’t mentioned this gee-probably-rather-important-fact before. Why? It wasn’t necessary. I was comfortable then. Honestly, I forgot.

Or, I’ll indicate to a new friend what I need in a one-on-one interaction, only to see that friend again in a group and realize that he or she really doesn’t get the big picture, doesn’t get that what works in one situation falls apart in another. Then, I’m obliged to speak up and clarify further, but too often it becomes easy to embrace a self-defeatist mindset and let things unfold as they will.

This is a problem: I tend to only mention my deafness when it becomes troublesome. Otherwise, I shove it under the carpet and ignore it. Ignoring it is something I’ve tried to do for a while, and it doesn’t work. Not only is it unfair to me, it’s unfair to the people whom I could construct valuable relationships with, if they only knew what to do. Approaching the hearing world head-on was part of my decision to get a CI, and since then I’ve gotten progressively better at being up-front. (But, but – there are situations where being up-front isn’t necessary! Where I can cope! Where lipreading is fine! Where the CI is amazing! Where I don’t feel the need to let every single person I meet know just how complicated all of this is! Like I said, all of these questions can get tricky.)

There are other questions I’m mulling over, too. For instance, what language should I use? Oftentimes “Hello, my name is Rachel and I’m deaf” doesn’t seem to work. Hearing people don’t know what to do with that word, that entire concept. They’ve often never thought about what it means. I’m as likely to get stares of shock as I am offers of accommodation. One of my deaf friends once advised me to introduce it through subtler means and action-significant words, such as “I lipread” or “I need you to look at me when you talk.” There, is that better? I’ve revealed something important about myself but also given my companion some indication of how he or she should behave. That's more productive and fair, isn't it?

Interestingly, talking about my CI fits into the entire d-bomb dilemma. “So that thing lets you hear?” people will ask me. I hesitate before giving them an answer. I want to explain that hearing isn’t the same as understanding, that it’s a beast of a process, that what I’m capable of now isn’t what I’ll be capable of in six months, or (certainly not!) what I was capable of when I first got switched on. But, for the uninitiated, hearing is a binary: either you can, or you can’t. I don’t want to contribute to misconceptions that, with my CI, I’m able to function one hundred percent normally, but I also don’t want to underemphasize the immense difference it has made in my life. So I sidestep the question a bit. I try to respond to the confused inquiries of “If you have a cochlear implant, then, doesn’t that mean you’re not deaf after all?” I try to address how lipreading and structuring my environment are still very important tools, even though, yes, I technically “can” hear at an almost-normal plane. The concept of balance between two worlds, deaf and hearing, is difficult for many people. And, in a way, the CI has only made it more complicated to explain.

In the end, it’s easy to want to give up. I find that sometimes there’s no way to be consistent about how I present myself and my deafness. But there must be a way to be consistently included, consistently understood, consistently enabled. There must be – just hold on, though, I’m working on it.

Sunday, March 13, 2011

Written While Procrastinating

It's amazing how, even on a gloomy overcast day that's robbed me of an hour's sleep, I'm able to sit listening to this solo piano station on Pandora and automatically feel energized.

It's amazing how, on the good songs, the notes shoot up and something in me rises too, like muscles heaving as I inhale sweet clear air and turn back to my textbooks with greater gusto.

It's amazing how much of this I don't understand, yet how I still gravitate to something just because it "sounds good."

It's even amazing how my sister laughs at me and says, "You used to hate music!"

So "hate" probably isn't the most accurate word to use here. But point conceded. Very, very gladly conceded.

Monday, March 7, 2011


It’s funny that I wrote about destabilizing moments in my last post, because I had one – albeit of a very different sort – this past weekend. Like a total dunce, I forgot to recharge my ensemble of CI batteries on Friday night, and so woke up on Saturday to find that I had a quarter of the juice in each battery, but that was all. Thinking that I’d remember to swap out in the middle of the day before my BTE died completely, I set out.

Of course, lunch came and went without this resolution even crossing my mind, and in the early afternoon the thrum of noise shut off. I had just gotten on a horse five minutes earlier, and the sudden silence was startling. No more birds, no more gravel crunching underfoot, no more wind. Just a deadening hush. My first reaction, I now laugh to say, was of panic. How could I deal with this silence? For a whole ride? And then for the time period afterward until I could get back to my room to switch batteries, a good forty-five minutes in which I would have to walk around and function and – banish the thought – talk to people? I wanted my sound back!

I’ll be honest, I thought about dismounting right there and running for the woods. It was something of an irrational impulse, but then another voice spoke up in my mind. You did this for twenty years, it said. You rode for twenty years, you lived for twenty years, just like this. It was fine then, and it’ll be fine now. Oh, yeah. Who was I, of all people, to doubt my ability to function without sound? Had I changed that much?

Still, as I entered the arena and proceeded with my ride, I felt less confident than usual. I spent more time looking into the faces of the riders I passed, glancing over my shoulder to be sure I hadn’t missed anything. I worried that someone would yell after me, or that something unexpected would happen nearby, and I would not hear. I even felt disconnected from what I was doing because of how I floated along in silence, muffled noise from my hearing aid notwithstanding. In short, my sound-acclimatized brain was embracing some of the fears that lay hearing people have about deafness.

When I dismounted, I passed some people in the barn and found that I suddenly did not want to talk to them. It struck me how hard it was to understand based only on lipreading and this indistinct-hearing-aid muddle. I finished up quickly, and went to meet a friend before walking back to my room together. Talking with him, my head reeled. I had to squint my eyes and focus; no sound cues were there to help me out. When I spoke, my tongue seemed to slide around in my mouth. I suddenly did not have any auditory feedback to track how I was articulating my words, and the edges of my pronunciation seemed to soften and turn to mush. I do not know how to describe this sensation: I literally could not find my verbal footing. Without my CI, my confidence, my situational awareness, my conversational skills, even the way I talked all seemed to crumble. In my mind, I could imagine what the world ought to have sounded like, but without direct auditory stimulation those imaginings became irrelevant. During those two or so hours before I replaced the battery and everything was fine again, I felt swept out to sea.

I won’t expand on this experience any farther. It’s something I’ll have to reflect on. All I have to say is: wow. My brain certainly has rewired itself, and I am stronger for it. In ways I almost have not realized.

Friday, March 4, 2011

When the Ground Sways Beneath Your Feet

I stumbled across this video from Advanced Bionics today and thought I'd post it. It fits into the lines of what I've written on this blog before, but there's still no getting over how incredibly sophisticated this whole CI concept is. And the best part: it sounds great!

I've been having a lot of moments lately (okay, maybe all along) of surprising complexity, destabilizing moments where it seems like my brain, under the surface, is working on a new breakthrough. Or when it seems like the meaning of something is just within reach, although I can only brush it with my fingertips. It'll happen quite suddenly: I'll be walking and talking with a friend when I notice that the sound of her voice is different than before, that it's making me gasp with its smoothness and resonance, even if I can't say exactly how or why it's changed. I'll get distracted by its rich ebb and flow, like little green tendrils are starting to blossom beneath the previously barren surface of syllabic patterns. Those are delicate roots that don't funnel down very far right now, but I can almost physically feel them growing. So, in my mind I'll gasp and then realize that I'm not paying attention to what my friend is actually saying. Why would I, when her voice by itself sounds so wonderful and strange? Earth to Rachel. Hello there, lipreading.

Speaking of which, I still do lipread extensively - but, when it's quiet, I've been having more and more moments where I'll turn half away or not quite see the shape of a word on someone's lips. Instead of panicking, I'll feel my brain gently slide in and hand the phrase to me. Oh. Thanks. That wasn't a big deal. A lot of times it's only afterwards that I realize I wasn't seeing, but hearing. My auditory therapist commented on this the other day - I'm not asking for as much repetition with her as I did during the summer, I'm more confident and self-possessed and more active in the conversation. This is something I might not have noticed on my own, but the feedback is a great confidence boost. Upon further reflection, it's true. When I'm not fried from processing all this new information, I have more room inside my own head to think.

In those quiet situations, there is a constant give-and-take between sound and sight, the two of them uncertain allies (and sound, the newcomer, often shuffling into the corner feeling unwelcome) but gradually learning to work together. But in noise it's a different story. Then, sound will rush headlong into the path of chaos while sight pulls back, disgruntled, and attempts to restore proper balance to my brain. With more small noises entering my stream of consciousness from farther away, this tug o'war is something that will continue for a while. I've found that I have a very hard time taking exams now because of the shuffling, rustling, coughing, creaking noises going on through the hush, whereas before the CI I was always perfectly content in my mental bubble of silence. I stormed out of my room the other night wondering what the heck the ruckus in my house was, only to find three people having a table conversation (okay, a lively conversation, but still, only a conversation) three rooms and two closed doors away. Really? It was hard to be upset when I realized I'd actually heard that. And heard it so loudly. Sight keeps wanting to seize sound's head and bang it on the table (okay, the rest of my body does too - it's a collective mutiny) but sound keeps holding its own, becoming bolder than ever. And, of course, more useful.

All of this, to be honest, has set me on the path of considering a second CI. There are frequent moments now where I have to check to be sure my hearing aid is still working, that side of my head feels like such a dead zone. But that's something I'll write about another time.

Sunday, February 6, 2011

Riders, Lend Me Your Ears

This is going to be a quick post, because I really should be studying right now...

But huge CI moment for me this weekend, as I competed for Stanford's equestrian team in a home horse show. For the first time ever, the PA system was making sense to me during the equitation on the flat classes, when I stood by the back gate within clear listening range. (I did have a similar experience a few weekends ago at an away show, but the volume and sound quality in that arena were so cruddy that I really didn't get much more than an isolated word or two, and even then I might have been making that up.) Getting ready for my class yesterday and earlier today, I watched the other riders in the arena and listened to the announcer give the verbal commands for which gait they should display next, and found my stomach doing little lighthearted flips. Because, almost every single time, I got it!

"Riders, to the rising trot."

"Sitting trot, please."

"Riders, canter please."

"Riders, please walk and line up in the center of the ring."

"Riders, drop your stirrups."

You get the point. I even got the numbers being announced sometimes, when there wasn't too much background noise or cheering from the crowd. Now, I've competed in horse shows for much of my life, and this has me feeling so giddy. I used to be terrified - absolutely terrified - of flat classes because of my fear of (and actual experience with) missing the announcer's commands and performing much worse than my best. I used to get unbearably tense before every such class, and would often ride abominably because of my preoccupation with what the other riders were doing - was I doing it right? What was next? When would the next transition come? Would it catch me off-guard?

Today - entirely different story. Although my auditory processing wasn't as stellar when I was on the horse rather than standing and watching, I did pick up a few things during my own class. All this made me feel like running and jumping up and down and telling my friends and teammates, "I hear it, I understand it! Canter! Canter!" (A note: I restrained myself. Flat class announcing is far too mundane for such enthusiasm.)

Granted, all of these commands tend to be rather redundant. But in terms of a closed set that's actually applicable to an area of my life, whoo-hoo!

Tuesday, February 1, 2011

Auditory Memory and Other Ramblings

Auditory therapy, session two. Take-away points: right now it's all about building confidence and auditory memory. (Nothing new. That mental sound dictionary is going to be years in the making.) And it's about making myself stretch, too, defining a set that's neither too open nor too closed. I have to flex my listening muscles, so to speak, and make myself work hard without becoming frustrated or feeling like the answer is out of reach. It's a tricky balance. So how do I push those boundaries? This week we tried several things. Listening and selecting sentences at different volumes and distances, defining a category and then having me discern open-ended statements about it, listening to sets of words and determining which one did not belong. That brain of mine is still reluctant to listen, to put its faith in something previously so unknown, but the more I push it the more it cooperates.

Also, I need to put aside my fear of incomprehension. It's a bit ironic that lack of communication is probably my biggest fear, yet it's something with which I have a tremendous amount of experience. Over the years I've come up with a number of coping mechanisms for situations when I'm just not getting it. My brain has gotten good at glossing things over, at filling in the blanks when it can and trying to cope when it can't. Up to this point, that puzzle-solving process has mainly applied to lipreading, but now it applies to listening too. While deciphering the speech sounds I hear, I need to make myself release some of my inner tension. I'm going into overdrive, piecing together sounds in an attempt to extract a statement that makes sense, and worrying when none of it fits - but, when things do click, it often happens suddenly. No analysis involved: I know what I'm hearing! That's the goal, moving forward - to ask myself, am I listening with my ears or with my brain? That analytical mind of mine has always been a huge asset, but maybe one day it'll be a bit less necessary, or a bit less overburdened, as more of the pieces fall into place. What a great thought.

And, finally - this may be a bit redundant, but I keep feeling stunned at the texture of the world with sound in it. Seven months has not distilled my private sense of wonder. There's a bird building a nest outside my window, and I hear it right now as I type. I've been noticing new types of bird calls around campus, too, and other sounds keep shadowing me, feeling more and more like good friends. The whistling of the wind, the squeal of my bike tires, overlapping machinery, people's voices carrying over from the most improbable places. Hard work aside, all of this is so, so amazing.

Friday, January 28, 2011

You Know It's Loud When...

The place where I live in college is big on parties. Almost every night the sounds of music, commotion, and people talking rushes through my wall into my room. I cannot escape (or, rather, refuse to escape), but it's a good exercise in filtering out irrelevant noise.

But last night - someone's twenty-second birthday. The house is packed and rather drunken. I've had a long week and am off to bed. I walk down the hall, past hordes of people squished together, sloshing their ubiquitous red solo cups. I am about to wash my face in the bathroom and have taken off both my hearing aid and CI. I float in silence. In that state of total deafness, I sink into my usual detachment and amused objectivity. That voice in my mind speaks up wryly; I wonder if any of these people realize how strange they appear from the outside, with the sound turned off, mouths gaping and faces contorted into improbable expressions. I want to laugh, even as I find it slightly grotesque. The uniqueness of my version of reality accompanies me as I weave through the crowd, not caring for any of it now that I cannot hear.

But I can hear, that's what disturbs me most: the music is so loud. It's thundering through my body, the beat sharply defined and harsh. And, in my right ear, in my non-CI ear that still has some residual hearing left, I can hear faint, far-away thrums. They slam into my head like popping, shocking my brain with their brute physical force. (Not so in the left ear, which remains eerily silent, so different from when magnet fastens onto skull - wow, I have become completely dependent on that apparatus.) A group beside me shouts, the song changes. And I hear it. If it's that penetrating and noisy, that even my deafness cannot shut it out, how can it be possible that the people around me are not going deaf themselves?

Except I know they must be. This is too much noise for it to be otherwise. I am reminded of a conversation I had with my auditory therapist earlier this week: just wait a few years. Soon more and more of them will be struggling to hear, to keep up, to understand, and I'll find myself better equipped to cope with hearing loss than any of them. Now, that's ironic.

And, yes, the silence as an escape is nice, but embracing it for the sake of 120 decibels of a pop song? Not worth it. I keep feeling troubled by what hearing people do to themselves. Breathe. Turn the volume down, for your own sake.

Monday, January 24, 2011


Today I popped on my CI and drove out for my first session with an auditory therapist since September. I'd been into her office once or twice over the summer when I flew out for remappings, but due to being gone for so long I hadn't been on any kind of directed program. Go out into the world and figure out the sounds in it! That was my task.

And, in many ways, it will continue to be my task for a while yet. CI rehab, if nothing else, is very individually motivated. I was pleased to find today that I've achieved a slew of milestones since July and September - things that were hard or impossible for me then are easy now. (Or, if not easy, then possible. That's still encouraging!) I could identify all of the major speech sounds, something which brought back memories of sitting in my house in July getting frustrated over "ah" and "oo" and wondering if this contraption would ever make sense. Ah, YES. Sentence and word identification, provided that I had a closed set, also turned out to be a relative breeze, even without a leading phrase for minimal-pair words. Open sets are still a struggle, not unexpectedly so, but I'm picking out bits and sounds throughout the sentences I'm given. (This is something I've noticed in everyday use, while sitting where I cannot lipread a person - I can catch the common words like "and," "but," "or," "I mean," "you know." Of course, this doesn't help very much with the sentence at large. But it's something!)

We also discussed brain and listening development up to this point and in the future, talked about the interaction between hearing aid and CI (which continues to evolve), thought about issues in quiet versus noise (still one of my biggest challenges), plus came up with some strategies for dealing with everyday situations and continuing my everyday listening practice. Every day that I wear the CI is practice! I need to remember that; all along I've been hard on myself for not doing enough structured listening. But my brain does pick up on meanings and nuances on its own, I still don't know how. One example: I was told today, and have been told by countless people at other times, that my speech has really noticeably improved since the CI. It's not that I spoke poorly before, just that my enunciation has smoothened out, become more regular, and my clarity and volume is the best it's been. Now, this is nice to hear, but it's not something that's happened consciously. I don't think more about my speech now than I did seven months ago. It's just my brain automatically and subconsciously correcting old habits to correspond with how I hear other people talk. How wild is that?

Finally, one of my big takeaway points is that, moving forward, building self-confidence will be key. Once I believe that I can do something, once I relax and smile and take it in stride, then listening comes easier and easier. This entire process of disproving my two-decade-old convictions is quite strange... But how wonderful to have a day where everything falls into perspective!

Monday, January 17, 2011

Success, Undermined

One thing that frequently bothers me is the uniqueness of my position, not only with receiving a CI at my age in my circumstances, but in doing the things that I do, as a deaf person.

I applied for a job earlier this month, and got a prompt email response praising my resume as well-qualified, with the inevitable line, "Please give me a call at xxx number so we can discuss this further." Oh, jeez. This again. Obviously I hadn't mentioned the whole deaf thing from the start; it was completely irrelevant. But obviously it had to come out now. So, taking a deep breath and feeling vaguely abashed (as I always do in such situations), I fired off a reply explaining that phone calls weren't an option for me, could we meet in person or email, et cetera. The answer I got: "How wonderful that you have gone this far in spite of being deaf." Uhhh. Yeah. Gah. And then a few evasive lines about being uncertain of whether I could manage the job because of my phone incompatability and challenges in receiving verbal feedback. Well, so much for that.

This is just one recent instance (and a pretty mild example, at that) of several things that I keep running up against. The necessity of labeling myself as deaf - which I am, yes, on one hand - even while I feel like I've morphed into some strange organism with head jumbled full of noise. Deaf, but not entirely. And not hearing either. The question of what I will be able to accomplish or do at any time in the future, and the uncertainty that accompanies such a state of flux. The assumptions that hearing people make, that everyone has the same mainstream abilities. The way I myself make these assumptions, that other people can see or run or jump or be athletic or learn quickly or eat an unhindered diet. (This bothers me. I hate assumptions, and hate that I should make them. But, in the end, aren't they necessary for collective groups to function?) Finally, the resentment that a deaf individual with my level of proficiency (in academic accomplishment, in verbal skills, in whatever) should be considered "exceptional." The perception that deafness is some sort of terrible barrier against high achievement.

Don't get me wrong, deafness can be a terrible barrier. No one knows that better than I do. But what most frequently makes it terrible, in essence, isn't the competence of the deaf individual in question - it's simply that the way the mainstream world works is incompatible with what that individual needs to thrive. Language. Accessibility. Early intervention. Visual media. Understanding. A social and therapeutic safety net. That this ideal environment doesn't exist isn't anyone's fault, not entirely. It's a problem that I don't quite know the answer to, but it bothers me constantly. Deaf people (contrary to the old moniker) aren't dumb. But I look around and don't see any of them at Stanford. I doubt there are very many at Harvard, Princeton, or Yale, either. I see very few of them in high-functioning, mainstream professions. I literally never see cochlear implants when I'm out and about. I think I'd just about do backflips if I ever glimpsed one. Growing up, I never had a deaf role model - my world was full of hearing people, and I wasn't sure what to do with myself. Many of the deaf peers that I had while growing up currently struggle in school, or hate it, or gape that I can achieve grades and acknowledgements and milestones on par with my hearing peers. In such a world, it's easy for me to forget that other accomplished deaf individuals exist.

This could be cause for me to celebrate and feel smug, but it isn't. I am reminded of how much I want a world where it's simply ordinary for deaf individuals to succeed to a high standard. It's not just that I don't want to be singled out. It's that there is no real cognitive, biological reason why more people with hearing losses shouldn't have the opportunities and experiences that I have had. (Social, political, psychological, and individual trends come into effect instead - now those are the snarky ones.) Why me? Why should I have this, if others don't?

This isn't a post intended to lay out areas in which the framework of deaf life in America could improve - clearly there are many - but, rather, a bit of a meditative outburst. These outbursts happen to me every once in a while, and I think the current one is worthy food for thought. This year I'd like to grapple with such questions a bit more head-on, as well as reach out and find other deaf individuals who have succeeded in their areas of interest, and how, and why. Yeah, deafness can be a big deal - but at the same time it isn't. With the right kind of environment, it really isn't.

Thursday, January 13, 2011

To the Mattresses

As I think was apparent in my last post, this is where the real work begins - or continues! My time after returning from a quarter abroad was largely a time for me to regroup, to literally and figuratively catch my breath, and I did little structured listening outside of a few covered-mouth conversations. Leading up to my remapping two weeks ago (which, in a nutshell, readjusted the electrode input and gave me a new program with a noise-reduction filter, which has been amazing for loud/distracting/overwhelming places like restaurants - I find that I can make out individual voices from among the hubbub!), I was content to let things glide along for a bit.

But now that I've returned to the structure of classes and the college lifestyle, I'm a bit more motivated to pick up the listening-exercises pace again. This is especially true after jumping back into an environment in which I'm surrounded by hearing people who: 1) unthinkingly assume that my abilities will be up to "normal-person" par, 2) ask me how the hearing is going (a natural question to ask, since I haven't seen them for so long) and therefore make me want to stay in practice, or 3) seem to have no idea how much my life has changed in the last six months, making me feel simultaneously dismayed and gleeful. Yes, a complicated mix, but that's the way things go.

So, I'm dogged again. The audiobooks are back. Appointments with an auditory therapist are upcoming. In class I challenge myself to listen, really listen, to the professor and predict what he/she says before the interpreter signs it. (Amusingly, this has brought up several instances where I notice that the interp has misstepped or paraphrased. Score!) Phone conversations - after literally a three-month hiatus - are working their way into my daily schedule.

These conversations have been the hardest part. They're not "conversations," per se, in that when my parents call we're not talking normally about anything. Rather, they're structured listening exercises, often accompanied by computer instant messages out of necessity. The usefulness of technology. Talking on the phone is way harder than talking in person, mainly because the range of frequencies inherent to human speech is literally compressed over the connection. Hence, speech doesn't sound like what I'm used to. It doesn't sound as dynamic and lifelike. People tend to sound far away, whispery or muffled, or just plain strange. Complicating the problem is the fact that I have absolutely no real previous phone experience with hearing aids to fall back on. I'm using the phone for the first time in my life. And sitting in a room by myself with a receiver pressed to my ear, straining to decipher the disembodied voice from the other end, is a real whoa! moment. It feels unnatural, I almost don't believe that I can do it, I start to panic, and the vicious cycle begins.

But, as with everything else, I've found that practice is key. Three days this week I've gone to the mattresses with the phone. The first time (also my first time since September, mind you) I was a wee bit too ambitious, and ended up feeling shaken, to say the least. Tonight I was actually smiling, picking up on impromptu bits and sometimes finding myself able to automatically reply. A bit like doing headstands at times, but the confidence that practice brings is astonishing.

Now, what happens when I do this every day? I can't wait!