Pre-Wired

Even with the CI, I keep running into the differences that I feel between my interests/pastimes and hearing culture. A lot of this might be more personality than deafness-related, but the fact is that being deaf has shaped my personality in one way or another. And even now that I'm hearing more, those deep-engrained preferences are still just there. They're not good or bad; they just are.

Take, for instance, music. I still remember seeing a deaf friend not long after I got the CI and having her tell me that she'd come to appreciate music more since getting her own CIs, but that she still wouldn't call music an active pleasure in her life. She didn't mind it if it was on, could even enjoy it sometimes, but she didn't actively seek it out. "I wouldn't waste the energy to get up and walk across the room and turn the stereo on, if you know what I mean," was what she told me. "Having it be quiet is fine by me, and honestly a lot of the time I prefer the silence." I remember having that conversation (it was about a year ago) while I was still in more flux between the deaf and the hearing worlds, still not quite knowing what would be possible for me with the CI or how it would change me. What! No! Music is cool! It has rhythm and pitch and complexity and whatever else - and I can hear it now! This is finally something to share with my hearing friends!

A year later, I think I've learned not to force things. I've ended up at a similar place as my friend. I'm grateful for the opportunity to experience music in my life, and when I find it playing in the background I can appreciate it much more than I used to, but... that's it. My brain hasn't made enough sense of it to be in awe, or addicted, or whatever hearing people feel when they listen to a song they like. Music isn't at the core of my being, and never will be. It's a roadside attraction when I happen to pass it by, but not something I pursue. I realize that some hearing friends might read this and find it sad, or pity me for missing out, but I don't feel any of those things. There might have been a point, immediately post-CI, where I was anxious for the device to do for and instill everything in me, when I would have viewed this relative apathy as a failure. But it's not. It's something like a hearing sighted person who isn't all that into art, but who will go to a museum from time to time with friends, nod appreciatively, and then leave. And I know several hearing people who are that way about music - my parents, for instance. I never had a very musical household growing up, my sister excluded. My parents like music when it tumbles into their lives. But they don't go out of their way for it. And neither, it turns out, do I.

This past weekend I was roadtripping back from an event with some teammates when they jacked someone's iPhone into the car, worked their way through a playlist of songs (what kinds of songs? I wish I could say), and all sang along for a good hour or so. The volume was amped up, the car was shaking, I was in the front passenger seat listening to them sing. There might have been a time in which a scene like that would have left me browbeating myself, feeling miserable, drowning in my own isolation. Obviously I couldn't sing along. I didn't know what song it was. I hardly knew anything about the music at all, save that I could hear it. Our worlds were leagues apart. Theirs - the world of music videos, of concerts, of karaoke, of singalongs. Mine - of thoughts, books, visual culture, and none of those auditory-based things. But the fact that I could be there with them, hearing if not quite sharing in the same experience or feelings, but still tapping somewhat vicariously into their car-ride singalong, was enough. They got something more complex out of the music than I did, but my own thoughts did get the opportunity to fly off unhindered. I found myself looking at that space between us, understanding what it was, and feeling more at peace with it than ever before. Maybe part of me even enjoyed it. To each his own.

And, honestly, this example sums up something I've been feeling lately - that, even though I am not a hearing person and cannot (or do not care to) participate in all of the facets of hearing culture, my own experience is so unique that I cannot dismiss it. This isn't a justification for exclusion or insensitivity, nor is it allotting certain things to the hearing that the deaf cannot or should not do. It's more of a commentary on myself, and on discovering personal preferences. My deafness has shaped me, for one end or another. Now that I can hear music and experience other things, I take the taste of it, smile, and feel appreciative. Then I realize even more strongly what I truly do love to do - for myself. Not for the sake of fitting in, but for my own abilities and passions, and for no other reason.

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). A 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.

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!

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!

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?”

“Yes.”

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?!

Reflections

The summer is almost over; my return to classes and university life is imminent. This change of pace, I feel, commands a bit of reflection.

Looking back, I am not the same person I was in June. This statement, of course, is true after almost any summer, but mine has been unusually enlightening. It was not a summer that I looked forward to, at first. I only saw the void of the unknown, combined with mundane home life and a separation from my friends and independent lifestyle. Yet I emerge from it having discovered so much, and feeling so eager to go on discovering more.

Only now do I have the presence of mind to look back at myself, pre-cochlear implant, and realize just how much I was struggling with. At times, I remember feeling as if I had the entire weight and expectations of the hearing world on my shoulders. As highly developed as my skills were, I couldn’t quite handle that burden, and I don’t think even I realized how unhappy I was at times. Now, challenges still lie ahead, and my listening skills are still far from perfect, but I’m empowered by the thought that I can change, that I can progress. This in itself has brought unexpected peace.

I had my three-month checkup and remapping this past Monday. In the days and weeks immediately before the appointment, I’d become increasingly dissatisfied with the sound quality from the CI. I’d had a while to acclimate to that program, so that as a result the volume felt diminished, sometimes making me strain to hear. My head was no longer full of sound – a feeling which, in all honesty, I’ve come to crave. During my appointment, I must have sounded like a drug addict – more, give me more! But, interestingly, my audiologist explained that the purpose of this remapping wasn’t as simple as turning the volume up. It was time to tweak in other ways, and to begin negotiating the fine balance between volume and clarity. A huge leap up in electrode volume would likely have negatively affected the clarity from the CI – just like, when a person shouts, the increased volume doesn’t make his/her voice any clearer. Often quite the opposite. (This is something hearing people frequently don’t realize; shouting at me doesn’t help.) The bottom line is: I have to continue learning how to use what I’ve got.

Still, we did increase the electrode input, and adjusted the balance of stimulation across the array. And, since then, the subtle improvements in the sound quality with the CI have left me amazed. Music – oh, music, who would have thought I’d feel the notes so physically and personally? A friend of mine recently challenged me to think about dominant chords and the tension buildup and release inherent in any musical piece. I still don’t really understand how or why one chord can be “dominant” over another (C versus G? what?), but while listening to classical right after my remapping I felt that tension – felt the chords building, swelling, then abiding. I can’t quite describe what it sounded like; I experienced it more in the form of a physical response. In any case, it was a real “wow” moment! In the days since, my iTunes (fleshed out with a compilation of songs from one of my best friends) has gotten rather heavy use…

Since the remapping, even people’s voices are sounding smoother and more natural than ever. I was startled to discover how rich and resonant the reader on my audiobooks sounded – quite different from the mechanical robot (slash duck) I heard at the beginning! Who’d’ve thunk it, there’s a real human voice on that CD! I keep noticing other environmental sounds poking through, too – the boink-boink of elastic bands, my fingers rubbing against the grain of wood, other people chewing food across the room (slightly gross). The last few days and weeks have really marked the first time that the CI has started feeling like an inherent part of me. By all accounts, this normalization does tend to happen at around three months – hurrah, the worst is over! And I still have a steep learning curve ahead. I still tend to set the bar a little too high while practicing, and resultantly come down too hard on myself – but who would have thought I’d feel this optimistic, compared with the unpleasant chaos of two months ago?

All that said, this is the last post I will make on this blog for a little while. I’m currently preparing to leave for a quarter abroad at Oxford. (Follow my travels at http://anglobibliophile.blogspot.com/.) Upon reflection, my hearing experiences this summer have prepared me for this further leap into the unknown – for what could be more unknown to me than sound? Comparatively, living in a foreign country seems like a piece of cake!

Now we’ll have to see how my baby CI helps me cope with those British accents!

Piece by Piece

The practice continues. But now, instead of listening to words like “banana” and “corn,” over and over again (or, even more tediously, “shhh” and “mmmm”), I find myself vaulting to giddy new heights. The last few weeks have brought an explosion of words to my auditory memory, skills to my repertoire. Listening exercises, instead of being a frustrating chore, have become a way for me to open the door ever wider into the world of sound. I now practice a wild variety of sentences, and even verge on short open-set conversations. Just think, me having a conversation through listening alone! And understanding! Granted, these conversations are about very familiar topics, with very familiar family members, but this doesn’t stop me from wanting to dance around the room.

These triumphs, though, don’t come without a good deal of drill and repetition. Our exercises have encompassed a range of categories, words, and ideas – and the exciting part is that I cast my net out farther with each day. Animals. Food. Flowers. Pieces of furniture. Sports and hobbies. Names of family members, friends, and pets. Numbers, months, days of the week. Social occasions. American states. Foreign countries. Random adjectives and verbs. All of these – framed in short sentences such as “I am traveling to ____ in ____,” or “Bob likes to eat ____” – are working their way into my auditory vocabulary. Some of them I now get easily, even lazily. Others, particularly new words I have not practiced before, I find flabbergasting at first. But the common pattern, ever astonishing to me, is that once I’ve heard a word once or twice, thereafter I can understand it almost without effort. The other night, I faltered when my mother said “flower arranging” in one of our practice sentences. But, several minutes later, when it came up again – snap. I knew. My brain had latched onto those words, formed some kind of neural connection already, without my conscious input. Isn’t it amazing?

Eventually, the hope is, I’ll be familiar enough with these words that they’ll flow in and I’ll grasp them without thought. But, I’ve discovered, this will not be the whole story. Another unexpected challenge is retaining what I’ve heard – not only recognizing the pieces of the puzzle, but holding on to those pieces long enough to assemble the entire picture. Now, I’ve always had a good memory, but I find that it sometimes fails me as far as hearing goes. Case in point: practicing random phone numbers. If I see a phone number written down, I remember it easily. But hearing it – that’s a different pathway, one that my brain has never had to use before. The numbers streak by, but as soon as I’ve grasped one, another is on its way. At the end of the string, I’ll stammer and say, “Wait – I understood that when I heard it, but now it’s not there!” It’s amusing how hard this is, and I often resort to spluttering, “Eight-something-seven-something-twotwothree!”

Even funnier, to me, are my auditory faux-pases. I’ve long been used to misunderstanding what people say, through lipreading, but I’ve rarely been able to find it amusing rather than embarrassing. Now, though, I’ve been blessed with the ability to laugh (sometimes uncontrollably) at what my brain thinks I hear, before it’s learned a word properly. Take these gems from a conversation with my sister Leigh:

L: I eat mangoes. Wait, why are you laughing?

R: It’s… never mind. Say it again.

L: What? Tell me!

R: It – it sounds like you said, ‘I eat my legs!’

[Later, after we’ve calmed down again]

L: I eat watermelon.

R: You eat Ronald Reagan!

L [laughing]: They don’t even sound the same!

R: Yes, they do – say it fast, watermelonRonaldReaganwatermelon!

[Later, approaching the edge]

L: I eat apples. Okay, what is it? Tell me!

R [laughing]: You eat bottles!

Other gems abound. Sometimes the sounds are somewhat close, other times they’re way off. Where does my brain dig up these things? Once it has fastened onto a supposed ‘meaning’ for a word, it stubbornly casts that nonsensical meaning onto that word every time. Even as I protest that that can’t possibly be right, that it doesn’t make sense. I’m at odds with myself. And yes, there are lasting consequences – even though I can now recognize “watermelon” for its true meaning, I still can’t hear it without thinking “Ronald Reagan!”

At the end of the listening road (wherever that is), along with an impressive arsenal of words in my auditory dictionary, I could have some very interesting mental connotations…

"My Son is Deaf, Finally!"

A few days ago, a good friend of mine sent me this link, and even now, I keep revisiting it in my mind. For me, it's troublesome, provoking, even irrational - but, sadly, not really surprising. I've met plenty of Deaf people who have this attitude about CIs. Be sure to watch to the end:



Still, expressed in this light, this man's sentiments come across as extreme. I keep wondering if he's totally justified in feeling the way he does. Maybe so, in that there is indeed a "double standard" between deaf and hearing people. While it's expected (and taken for granted) that one will conform with the hearing majority, it's not nearly as acceptable to be deaf, and to live as a Deaf person.

But the analogy doesn't quite hold up. Hearing is more than a bias: it's a wonderful ability that enables us to connect more fully with our world and the people in it. While being Deaf may be a culturally rich lifestyle, and while it may carry a unique communicative heritage, embracing Deaf culture will never fully stamp out the isolation that derives from not being able to hear. The two scenarios aren't completely equivalent.

So why the anger? As a recent CI recipient (albeit one who did choose for herself), I can't help but feel bothered by this example of reverse prejudice. This pent-up frustration, directed toward the hearing world, is upsetting. Yes, hearing people very often ought to understand more than they do. But, instead of this pointless antagonism, how about pursuing real acceptance and accessibility?

What's in a Word?

Really, by far people's favorite question to ask me is: "So. What did that sound like?"

Always this question - whenever there's a new sound in the environment, or whenever I come across a word that my ears find unfamiliar, or whenever my face looks slightly puzzled. (I guess I must look puzzled pretty often these days.) Oftentimes, I find myself casting out in vain for an adequate description. The sound quality of the CI is changing and improving all the time, but it's still not equivalent to what hearing people hear. What did that sound like? Ha, I don't know! Language fails me, especially since I have no previous experience to compare with. Depending on the situation, maybe it's:

Rough. Tweety. Mechanical. Cartoonish. Fuzzy. Damped. Squashed. Gravelly. Blaring. Blurred. Quacking. Flat. Crackling. Robotic. Squawky. Breathy. Cottony. Out of focus. Hissy. Murky. Distorted. Grating. Hollow. Muted. Roaring. Whispery. Screechy. Chirpy. Droning. Thin. Layered. Vibrating. Electronic. Chopped up. Warbling. Blunted. Dulled. Garbled. White noise.

So. What can a well-chosen adjective convey?

In Which Silence Makes an Unexpected Reappearance

An interesting thing happened today. While listening to Chopin’s Etude in G-flat major on my work computer, my CI battery died. Abruptly. Whatever the reason – that it didn’t charge correctly, that its life is diminishing with use – the result was silence. Total and uncompromising, where piano chords had rolled only an instant before.

My reaction was ironic – and, I soon found, amusing. Stupid, stupid battery! I was enjoying that song! Now I have to wait hours to hear again! Why couldn’t you wait until I had a spare? [Prod, shake, shake, shake, tap, frown.] Ha, I would never have felt this way several weeks ago, when all I wanted to do was tear the CI off.

What arose, this time, was a sudden feeling of being severed from part of my world. How dependent I’ve become on a battery and a bit of silicon. I still had my hearing aid in my right ear, of course, but it was comparatively useless. I sat at my desk, expecting to hear the sounds I’ve learned since the end of June, the sounds I’ve come to take for granted. They were not there. Or, they were still there somewhere, but not for me. What I could hear was muffled and diminished, rather than sharp and bold. My surroundings, besides what I could immediately see and touch, seemed detached. Even in my quiet office, I’ve grown used to hearing people walking down the hallway, the air conditioning humming, fax machines and printers whirring, phones ringing, vacuum cleaners roaring. The world living, moving, thrumming. Now, without sound, it was as if that world had retreated, leaving me sitting alone inside my own mind.

This, I thought, is the way it used to be. This was my reality. Amazing, just how much the CI has embedded itself into my experience and my expectations. Though silence is fine with me during intentionally solitary moments, I’ve come to crave sound. Anything less is disappointing.

And it’s only been two months!

Tapping My Feet to the Music

(What I don't need anymore, hopefully)

Mozart. Brahms. Wagner. Andrew Bird. The Eagles. Imogen Heap. Dave Matthews. Norah Jones. Jesse McCartney. Carrie Underwood. Okay, okay!

For a deaf person, music is a veritable Pandora’s box. It’s an unknown realm filled with so many impressions and styles, so much history, as to make the prospect of listening rather daunting. Before the CI, I already had a sense of speech and environmental sounds, based on years of therapy, observations and experiences in the hearing world, and the books I’d read. But music? That was largely uncharted territory. Only recently have I started to open the box, to glimpse whatever lies inside.

As a result, music is on its way to engraining itself in my life. “Wow, Rachel likes music now!” my little sister said the first day I stole her iPod; this exclamation, in various forms, has been echoed by several friends since. But really, now that I’ve got the tools to listen, what’s not to like? Even if I didn’t know what to expect, my musical journey has already changed my personal landscape in striking ways. I no longer view iPods as foreign objects, although navigating iTunes is still a novelty. While driving, I like the radio loud: beware to whoever gets into the car after me! Playing CDs at work has become routine, making the time go faster and more pleasantly. I write better sometimes while plugged into music, when not distracted by an odd beat or melody. (And yes, I still remember asking my hearing friends in bewilderment how they could think with all that noise.) I’ve found, to my amusement, that I can multitask and hold a conversation (via lipreading) even while my head is pulsing full of some rock song. A few weeks ago I sat down at the piano for the first time in years, plinking around trying to hear the differences between notes, chords, and octaves. Recently I’ve progressed to trying to play a few songs; those long-ago piano and guitar lessons have to be good for something. And just yesterday I discovered the rewards of plugging into an iPod while working out. It really is easier to roll through those push-ups with a strong beat pulsing through your head!

Yet I keep realizing how much I don’t know. I keep asking questions that must seem naïve and somewhat dumb (“If they’re playing the exact same note, how do you tell the difference between a saxophone and a flute, or a violin and a cello?”). Music truly is like a different language.

Still, my baby ear is developing. I keep wondering how hearing people first encounter and understand music, because for me it’s been a bottom-up journey, from the fundamental beat all the way up to the lyrics. The first time I heard any type of song, post-CI, was in the car with the radio on. Even though the quality of that sound was awful, I still remember my astonishment at realizing that I was hearing a definite, strong, rhythmic beat. Unless the volume was turned up to deafening levels, I had never experienced this before – and, when I had, I’d found it unpleasantly overwhelming. For several days after turn-on, the beat was all I could hear in any given song, before I started hearing the melody as a strange, staticky, grating noise. No thank you! Since then, though, practice and several remappings have helped my brain make more sense of what I’m hearing. The sound quality is much improved, and the assortment of notes fits together into a more dynamic picture. Lyrics are slowly coming through, depending on the song. When I can make them out, though, the singer sometimes sounds like he/she has laryngitis. Hopefully this will go away!

As far as pure instrumentation goes, I often can't distinguish between the different instrumental and vocal parts of a song, which can make some music (especially pop) sound slightly muddled and chaotic. At a friend’s recommendation, I’ve spent more time listening to recordings of single instruments, seeing if I can follow the direction of one melody. Classical is especially good in this regard, though the string instruments can sometimes sound screechy. I’m hoping to get my hands on some a cappella recordings soon. Rock is fine, though it sometimes makes me feel like I’m about to blow a fuse. I haven’t listened to much jazz or country or heavy metal. No rap yet, either. Really, I don’t know what I’m listening to half the time!

An interesting step in my musical experiments – last night, my cochlear implant and I took a trip to the Santa Fe Opera. Greeted by splatters of rain, billowing clouds, and spectacular views of the sunset over the Sangre de Cristo mountains, we took our seats in the sweeping theater, open to the night air outside. My father had only come with us after some persuasion, complaining that it “wasn’t his cup of tea” to listen to “people screaming pretending that they’re singing.” Admittedly this was what I had once thought of opera, my experience being limited to one elementary-school field trip to a small performance in an Albuquerque theater, in which I watched the singers’ faces turning red, didn’t hear much, and decided that the whole concept was rather silly. Last night’s outing ended up being more fun! The night’s performance was an apprentice’s showcase featuring different scenes from various operas, and although I wished I could have witnessed an entire opera instead of these fragments, it was an excellent introduction to all that opera can be. A few off-the-cuff observations:

1. Many of the apprentices didn’t have the range of voice that I expected, but the few good arias over the course of the night gave me a weird sensation, as chills rippled down my arms and my insides stirred, trying to cling to the sound. I haven’t experienced that feeling yet with other types of music.

2. Several times, I squinted down trying to lipread the singers when I realized they weren’t singing in English. Whoops. That said, I seem to enjoy opera better in other languages; the singing sounds better and more poignant.

3. My CI battery started to die near the end – nooo! I thought, wanting to grasp the sound and pour it, amplified, into my head. Strange how subject I’ve become to a gadget. Next time I’ll bring a spare.

4. The electronics title system (which the opera house had, on each seat, instead of supertitles) is excellent! Why don’t live plays, speeches and events, movie theaters, etc., all have that?

5. Opera, it occurred to me, seems to be driven by raw emotion, by an effort to make those sentiments concrete. Which, it also occurred to me, is probably true of most music, isn't it?

6. Who ever knew you could make an opera scene extolling ice cream? I thought it was all about doomed, star-crossed lovers. Which we saw, too.

My musical discoveries, ongoing as they may be, have consistently raised the question: what defines good music? I honestly don’t know. I’m a big reader, and I know what defines good writing. I have some background in art, and am able to evaluate a visual piece of work. But music? Hmmm. I keep listening, puzzling, trying to pinpoint exactly what it is. I like it, and I want to hear more, but I don’t know exactly why. Some of the most interesting conversations I’ve had since the CI have been about music; I’ve seen sides of my hearing friends that I haven’t seen before. A few of those friends have tried to articulate to me why they like to listen to the music they do. Their descriptions make sense intellectually, even if I still have to discover those ideas personally and emotionally. So, for the readers of this blog, I extend the question to you: what makes a piece of music good? And why?

One Month!

Just a quick post to celebrate a milestone: four weeks ago today, I started on this crazy hearing adventure of mine. Already a whole month! Where does the time go?

These weeks have been simultaneously thrilling and hard-won, eye-opening and frustrating. They've taken me through a roller coaster of emotions, discoveries, and novel experiences. But, now that the worst days are past, I feel like Dorothy in The Wizard of Oz, stepping breathlessly into a world of Technicolor. The more time I spend with the CI, the more I find it dynamic and thrilling. And the world of hearing is so new and wonderful that, without it, I indeed feel like I've stepped back into dark sepia tones. (Don't get me wrong, the silence is still reassuring; it's the hearing aid that suddenly feels disappointing, like a glass of flat soda.) I much prefer Oz to dust-bowl Kansas!

These splashes of color have already changed my life in startling, concrete ways. I've discovered the joys of driving with music blasting in the car. I'm constantly plugged into some audio device, be it an iPod or a book on tape. Subtle sounds that I never heard before, I'm now taking for granted. With surprise, I discover that listening to people's voices is really improving my lipreading. I smile more often, fascinated by the smallest of things. I seem to be becoming a freer, happier, more confident person. Already I'm wondering how introverted I really am, and how much of my personality has been shaped by circumstance. Yes, I am still the same person I was several weeks ago, yet at times I find myself almost unrecognizable.

And this is still only the beginning. I'm willing to let this ride take me where it will - bring on tomorrow!

Magneto

How odd, having a magnet stuck to my head. The researchers who developed CIs were certainly ingenious about the whole concept of electrical-signals-transmitting-sound, but I wonder if they realized how much of a pain the external processor can be.

Now, hearing aids are relatively easy: stuff the earmolds in, turn the thing on, go on your merry way. In a sense, the CI is even easier – it eliminates the hassle of getting earmolds fitted, for instance – but it's introduced a whole new set of logistical complications I’m still adjusting to. First of all, every time the external magnet sticks to its twin on my head, it completes the circuit, rocketing me from silence into full-blown sound. Sounds simple enough, but the ensuing ROAR makes for many noisy surprises. If only I could ease the magnet into place, rearrange my hair, get comfortable, and then turn it on. This, unfortunately, isn’t possible. As soon as the magnets touch, the power of Magneto takes over, and all constraints are off – brace yourself! I cope by turning the volume way down before unleashing Magneto, but sometimes this backfires and I find myself gasping like I’ve been plunged into a tub of icy water.

Once the CI has been on for a few minutes, though, I settle naturally into the thrum of the sound. It’s as if my nerves need time to get humming, to remember what all this means. That is, until the magnet falls off. Wait, why did everything go quiet all of a sudden? I’ll wonder, only to feel an unmistakable cord and object dangling against my neck. Dang. It doesn’t take much sometimes. Pulling a shirt on, straightening a stray wisp of hair, flicking my fingers so they catch on the cord anchoring the magnet to the processor. When Magneto comes unanchored, I stick it right back on, only to feel myself jolt back into the world of sound. ROAR. Sometimes I switch earhooks (from the one I use for audiobooks and music to the standard T-Mic), only to find that the volume is so loud it's making my face contort in shock. No harm done, once I shift down to quieter places, but not pleasant either.

Magneto may be all-powerful, but hold on when I'm exercising? Never! Stretching, running, biking, working outside – all of these have introduced problems, and I've concluded that CIs just weren’t designed for athletes. Headbands help keep the thing on, even if the result looks strange, a bulge on the side of my head like I'm sprouting an abnormally large goose egg. Hats and helmets don't fit too well anymore, what with that magnetic bump, but I've found ways to cope. We tailored my riding helmet to have a groove on one side, where the magnet nestles inside (although it still tends to shift around, screeching and then going suddenly quiet, when I'm on my horse). I'll have to keep working on that.

Not only Magneto insists on parting ways when times get tough - my BTE processor does, too. It's at least twice as big and heavy as my hearing aid, something which made my ear cartilage sore at first. And, since there's no earmold holding it in place, when it decides to tumble to the ground, there's no stopping it. Tilting my head to rest on my hand, bending down to pick up something, the aforementioned forms of exercise - all of these are enough to make the BTE jump ship. (Interestingly, sometimes it's only Magneto, along with headband, that keeps the whole thing from crashing on the floor.) I'm determined not to become sedentary because of these new challenges, though!

So what do I think of myself as Magneto? I admit, getting used to this new self-image has been an adjustment. I glance in the mirror and see someone who looks like she’s been plugged into a computer, silver and glinting. Literally bionic. I didn’t like the look at first – it’s more obtrusive and space-age than hearing aids – but if I can hear and function well, who really cares? Amusingly, I’ve already been asked by strangers and passersby, “Is that a cochlear implant?” They ask it with an air of fascination. No one was ever this curious about hearing aids, I suppose because they're associated with the elderly and senile. The CI, on the other hand, is cutting-edge. The conversations that arise are interesting, and I realize that I'm settling into the role of CI poster child. Who'd ever have thunk?

Order from Chaos

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

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

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

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

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

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

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

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

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

Bang, Boom, Click

The battle of wills has started. Either I'll adjust to my CI and take off to amazing feats unknown, or it'll drive me insane. Jumping from hearing almost nothing, to pounding sound, all of the time, is a huge adjustment, to say the least.

To describe how I felt all day yesterday, and part of today: Harassed. On edge. Miserable. Overwhelmed. This cool video sums it up (might want to turn down the computer volume first):



When I turn on my CI, my entire body tenses. I'm being bombarded with noise, as jagged and unrelenting as sharp rocks or mountain peaks. What I hear no longer sounds like electric jolts or tones, more like harsh, static clicks. My skull is a metal can, and someone's shaking dice in it, playing Yahtzee. Rattle, rattle, rattle, BANG! This change is good, because it means the sound quality is slowly improving (only three days in!). But it's also bad, because I can't stand it. All day long, I'm being ground to a pulp, and the feeling of it is hideous.

I went back into the office yesterday, thinking that it'd at least be a quiet environment. Boy, was I wrong. I turned on my computer and started typing, and it was as if someone had set off an avalanche. A thousand stones tumbled off a cliff, banging and clattering down into my mind. After thirty seconds, I stopped and panted. Even the mouse made unbearably loud noises - click, click, click! I turned the scroll wheel to navigate a webpage - clickclickclickickickck! This went on all day. Whir. Click. Bang. Shhhh. Click. Roar! Utterly peeved and agitated, I would sit back in my chair to try to give myself a reprieve - and then immediately jump and tense when I heard myself exhale. Who knew my breathing was so loud? When my coworkers came in to talk to me, their voices shook my skull - boom boom boom. By the end of the day I was impossibly stressed, tensing and holding my breath so I wouldn't make a sound, inhaling before launching into another round of typing. When the phone rang, I almost leaped to unplug it and throw it out the window. I felt like vomiting, screaming, passing out, bursting into tears, or all four. Shut up!

Today has been a little better. Between yesterday afternoon and this morning, I've discovered some new sounds: birds squabbling in the trees by my front porch, cicadas buzzing in harmony, the dog next door barking incessantly. My horse is big and loud: crunching carrots by my head like a tyrannosaurus, clopping across concrete so hard I'm surprised it doesn't crack, snorting, whinnying whenever she sees me come out the door. I'm suddenly understanding her fear of flapping plastic bags. They do sound like monsters! In my house, the air conditioning is a constant buzz, and the refrigerator never stops rumbling. When I read I startle myself every time I turn a page and hear the rustle of paper. Clothes audibly slip on and off. How is it possible for that teeny little button to make a sound? Dresser drawers, doors creaking, keys rattling. It's inescapable.

But by far the highlight of my CI experience so far - music! I figured out this morning how to plug my sister's iPod into an adapter hook on my CI processor, and proceeded to rock out for the next hour and a half. I can only hear the bass and beat right now, but I could listen to it all day. Unlike the chaotic noises all around me, music is rhythmic, pleasing, and purposeful. How was I to know it was so nice? Right now, it's the only thing that I can listen to and actually enjoy. Everything else is a jumbled, nausea-inducing mess. I see more iPod days in my future, but in the meantime, I hope the other sounds clear up fast!

Sounds, Sounds Everywhere

I'm on! My CI is activated! As I write this, my left ear is just under three days old, and I'm already realizing that the world is an unbelievably noisy place. I hardly know where to start - as I expected, my life has been turned on its head, and I'm at a loss for words. Let me back up and track the first two days, from the beginning.

Tuesday, June 29

5:10am: I jolt awake with my heart pounding, and immediately remember that today is the day. Of course, there's nothing I can do about it before the sun has risen, but that doesn't slow my pulse.

6:45am: I finally stop feigning sleep and jump out of bed. I feel relaxed and normal from my shower on through breakfast, but I'm consciously counting down the hours.

10:15am: Killing time around campus, enjoying the beautiful weather. One of my friends texts me and tells me it's the moment of truth. She thinks I should be scared to death. I'm not, though. Only curious and excited. What do I have to be afraid of?

11:00am: I arrive at the otolaryngology clinic for my first appointment of the day, a follow-up with my surgeon. He's a little late, and when I see him I have a sudden flashback to lying in a hospital bed with a gown on. Was that only two and a half weeks ago? He looks at the small pink scar behind my ear, runs his fingers over it, and tells me it's healed perfectly. Then he looks me in the eye and says, "Today will be your worst hearing day. You won't like it, it won't sound like what you expect, so don't be disappointed, okay? It'll only get better." I nod. This is what I've read from other CI patients, and I've been trying hard not to have expectations. But at the same time, I wonder what I've signed myself up for.

11:45am: Lunch. My mom and I wander around a bookstore. The hours have turned into mere minutes. I'm antsy.


1:00pm: It's time. My audiologist greets me in the waiting room and we walk back to her office. As soon as we enter, I see the Advanced Bionics box on her desk, propped open and waiting. My name is written on a sticky note on the side, and I realize that today marks my entrance into a new world. The audiologist tells me what my surgeon did two hours ago, that today will be the worst day, that I might not hear very much at first, that it won't make sense. Again I nod and say that's fine. I can tolerate whatever comes, right?

The box is chock-full of goodies. In addition to the actual hardware, there are cords, chargers, carrying cases, accessories, instructions, extras. We begin by taking the external processor out. The audiologist explains how the buttons and controls work, how it connects to the magnet and to the T-mic that curls around the top of my ear, how the heavy battery clips on at the bottom. It's very straightforward, not too unlike a hearing aid. When I take the fully-assembled behind-the-ear (BTE) into my hands, though, I realize just how big and heavy it is - probably twice as heavy as what I've been used to. The audiologist plugs the BTE into a computer, instead of a battery, and puts it on. I marvel at having something stuck to the side of my head, and wonder out loud if a refrigerator magnet would stick. The thought is ridiculously amusing.

The audiologist launches the Advanced Bionics programming software on her computer and runs a few tests. "You probably won't feel anything yet," she says - but, actually, I do. Like a sudden ping, an electric surge rushes through my body. I jump and say, "Wow, that was weird." Her eyebrows raise in surprise. Some more programming, adjusting the levels of different frequencies. I wait in silence, feeling tense. She looks at me and then presses the button on her screen.

Immediately - another electric pulse, this one stronger, running from my head all the way down to my shoulderblades. My whole body convulses in shock. I think I grip the desk and blink. "That was really weird," I say again. She smiles and nods.

We continue, testing different frequencies and trying to find a level that is neither mild nor overwhelming. Jolt, jolt, jolt. It's all the same, a universal tone - or, rather, a physical feeling. I don't know how to describe it, even two days later. It's not a sound, not a beep like I was told I might hear, though I can see why someone would label it as that. It's, quite simply, the feeling of a nerve firing in my head, over and over. I feel like someone's placed an electrode inside me and is shooting electricity through my body, the action potentials rushing down the same synapse - like a tetanus. It's not painful, just incredibly strange. I've become a giant human battery.

We finish programming my BTE at a level of "sound" that feels comfortable, then the audiologist takes it off and unplugs it from the computer. After replacing the computer plug-in with the regular battery, she hands it back to me. "Put it on," she says. My hands are fumbling; this is very different than hearing aids. I manage to wiggle the ear hook into the right place, then reach up along my head to where the internal processor should be. As soon as the magnets make contact, I feel an intense rush of electricity. It's like a shock. I jump, almost falling out of my chair, then the feeling eases, replaced by a pulse whenever there's a sound. The audiologist sits back, covers her mouth, and tells me to raise my hand whenever I hear her say something. Pulse. Pulse. Pulse. This is not sound at all - I don't know what the heck it is, but it's not what I expected. I don't know how anyone could expect this. I'm seriously weirded out.


2:20pm: Out of the clinic and walking around, officially bionic. We run an errand on campus, and when the clerk starts typing I turn my head and stare. The sound of the keys is surprisingly sharp and loud, like dice rattling inside my head. It's almost unbearable. In the car my mom turns on the radio and I realize that the CI fires along with the beat. It's the first time I've ever been so keenly interested in music. Even when we get out of the car, I find that the CI is firing all the time, and I often don't know why. I realize that, quite possibly, I'm becoming aware of sounds I've never heard before.

4:00pm: I go through the Advanced Bionics box the audiologist gave me and discover that, when I touch it, everything makes a sound. The plastic rustles - pulse, pulse, pulse! The light switch clicks - jolt! The zipper unzips. Pulse! I take a drink and hear myself swallow, the water coursing down my throat. Freaky. I walk and hear my footsteps. Sounds are everywhere!

4:50pm: We wander around the mall for a while, taking in the different sounds. I shut off my hearing aid, and with the CI none of the environmental noise makes sense. I'm still a live wire. Slowly I try to increase the volume. Whenever I do this, my head spins like it's going to burst with the power surge. I gasp like I'm coming up for air.

6:00pm: I meet some friends, and later we go out for dinner. My head is thundering with nerve impulses. It makes my eyes blurry, makes it hard to lipread.

10:30pm: Finally, I shut the CI off. By this time I'm utterly exhausted. Pulse, pulse, pulse. It never stops. Lipreading has required all of my strength and focus, which the electric jolts try to tear away, and I feel like I'm floating outside myself, in the land of the surreal. I read the CI instruction manual before bed. Never have I been so appreciative of silence. Is it possible that any of this pulsing mess will ever make sense?


Wednesday, June 30

7:30am: Showered and dressed, I pick up my CI to put it on - do I dare? Just like yesterday, when the magnets touch, I jump at the shock. When I'm combing my hair, the magnet falls off and I curse silently, then ease it back into place - zap! Will I ever get used to this? It's going to give me a permanent bad hair day.

10:00am: Time for my follow-up with the audiologist. She's impressed by the noise tolerance I've attained, and the fact that I can distinguish different sounds - even if it still just feels like electric jolts. I've also stopped feeling the sound all the way down my neck to my shoulderblades; it's localized to my head. We reprogram the BTE, and this time go way up in volume compared to yesterday. She asks me if I can distinguish between the different frequencies, but I can't. It's still the same uniform sensation of nerves firing, whether the pitch is high or low. There's no true quality of sound yet at all - only an awareness of sound being there. It's like computer code, 0 or 1. 0: no sound. 1: sound. Argh.

We test with a few different vowels and consonants, seeing if I can differentiate them. I don't do too badly for my second day, though the whole time I feel like I'm grasping at straws. I have an especially hard time making out the high-frequency speech sounds like "ssss" and "shhhh," though I'm hoping this will come soon. Despite the power of the implant, the sound quality is still much better with my hearing aid. The audiologist tells me about different exercises to do at home, and we discuss the different things I might hear, how I might progress. We're starting simple, with distinguishing three-syllable from one-syllable words. I already find this easy - just count the pulses! Ba-na-na.

12:00pm: I have lunch and see a few more friends, still trying to ignore the strange tones echoing in my head. Lipreading is still difficult, but I fare very well considering.

3:15pm: Heading to the airport in the car, I find myself needing to turn on the radio. This is not normal for me - with hearing aids, I only perceive music as garbled, annoying noise, and have always insisted, "Turn it off!" while driving. But the beat, which I can now hear and follow with my CI, is new and surprisingly appealing. I actually like it! I focus on it as hard as I can, letting it guide my thoughts. So good.

4:30pm: Airports are noisy places! I try to sit and read, but keep getting distracted by - I don't know what. Sound. I can distinguish between a voice over the intercom versus general background noise, which is something. My body already feels the physical toll, though. My head is bursting. At least I managed not to set off all of the airport security metal detectors with my hardware.

7:00pm: On layover in L.A. I hear a cascade of noises - luggage wheels clicking by, people's footsteps, the click of stiletto heels, a group of men laughing a few feet away. It's fascinating, but makes me nauseous. I keep clenching my head in my hands and wishing it would stop. Is the world never silent? I'm beginning to realize why people like music - surrounded by these constant random clashings and commotions, music is an escape, a reassurance, a pleasure. It's an auditory input that I can control. Even though I've never listened to an iPod in my life, I wish I had one now.

9:30pm: On our second flight of the day. The friendly flight attendant asks about my Advanced Bionics box, attempts to make conversation, but I'm too exhausted to lipread and don't understand more than three words. Unexpectedly he looks at me and signs, I love you! It's the only thing he knows. I grin and laugh.

11:30pm: Finally back home, and the CI is still pulsing. I feel like I'm inhaling the sound and holding it in the core of my chest. It resonates through my whole body. It drowns out my thoughts, consumes my being. All I can do, on the car ride home, is sit numbly and surrender to it.

12:15am: I turn the CI off, leaving only my right hearing aid, and heave a sigh of relief. The fog has lifted, I've returned to myself. But I immediately notice something strange. Though the CI is loud and unrelenting and exhausting, like an overbearing bull in the china shop of my mind, in comparison my hearing aid sounds flat. Disappointing. Mouse-like. Hearing without the CI, it's as though all the texture, all the liveliness of the world, has been steamrollered and squeezed out. What I hear with the hearing aid is sound compressed into a very narrow window, not allowed to sprawl out, romp, and ricochet as it would please. Though I've had more than enough of hearing for today, I almost long to turn the CI back on, if only for that startling and rich stimulation. But, when I go to bed and try to fall asleep, my head is still ringing. Pulsing. Insisting on the memory of what it's like to hear. Resisting the silence.

T-Minus Two Days

The moment of truth has come. The beginning draws nigh. Or, less dramatically: the day is almost here! I travel back out to California tomorrow night, and will activate my cochlear implant there this Tuesday. In less than forty-eight hours, I will have broken the silence. I will have heard something, and will be on my way to experiencing a whole new life of sounds I've never heard before. Some of which might include:

- A cat meowing

- The floorboards creaking

- Door hinges squeaking, the refrigerator whirring, other odd noises in my house

- The rustle of paper

- Birds outside

- Branches scraping against the window

- Funny car noises

- Other drivers honking at me from the road

- Keys clacking as I type

- Musical notes

- Whatever kinds of noises actually correspond to "beep," "bang," "clack," "whir," and all these verbs I've been using

- Plus a panopoly of other sounds I don't know I've been missing

I can't say how excited I am for the turn-on; it hasn't strayed far from my thoughts this week. But I'm also trying to keep my expectations low. I'll take whatever comes, because it'll likely be more than I've heard before. It won't come all at once, either. I've read that the moments of turn-on are odd and overwhelming, to say the least. Sounds won't be the same as I've ever experienced, nor will they be the same as what hearing people experience, because they will be encoded in an entirely different way. They'll rush into my brain, rapidfire electrical signals, and it'll be up to me to begin the arduous process of breaking the code.

I've read that, at first, the CI just sounds like beeps. Literally, everything that I hear: beep beep BEEP beep BEEPBEEPBEEEEP. Or that the world will seem high-pitched and out of whack, as if all its noises are powered on helium. Some even say that the CI doesn't start out as a sound at all, but a strange nerve-tingly feeling on the side of the head. Wow, what have I signed myself up for? The first few weeks might drive me nuts, but I'm relishing the challenge.

There isn't much else to say, except that I'll see what happens when the day comes. But before the sonic boom starts, I'd like to put in a word for silence.

As a deaf person, I've met many people who seem to pity me because I can't hear. "You can't talk on the phone?" they ask in dismay. Or, "You didn't hear those birds, did you?" Or, "I wish you could hear this beautiful music." They only want to share the richness of their lives with me, but they don't understand that I don't want their pity. Yes, the day might come when I, too, wonder how I could have remained so deaf to so many things for so long. But right now I don't regret the sounds I've never heard - because I, too, have been able to find richness and beauty in this world, even in my life of silence. Right now, music has never added much value to my life, so I cannot miss or long or mourn for it. I do hope that I come to appreciate and even enjoy musical notes and scores, as I come to enjoy the other sounds my CI gives me. But there is something to be cherished in silence.

Silence: it is the flip side of the coin. I have always felt that hearing people have little appreciation for its value. This is ironic in the light of complaints of "hardly being able to find a quiet place to sit and think." Stagnancy, awkwardness, boredom, isolation - these are the feelings the mainstream commonly associates with silence. Hence, they do everything they can to avoid it. I have friends who never drive without the radio blasting, who get uneasy at any conversational lull, who always sit with their iPod headphones plugged in. Music, sound, stimulation everywhere. I wonder if they have ever experienced total silence. I can, at any moment. Sometimes it is among my favorite things in the world. I feel like I am floating suspended, treading in a river of cool water. My thoughts float lazily by. I become aware of the vibrations around me, the subtle shifts of life: a breeze in the air, the shift of something in my peripheral, the tremble of the floor beneath my feet. In this bubble, I can almost feel my brain pulse.

That said, my highest hope for the CI is not to enjoy sound. I'm functional and content without sound. My hope is to gain greater social connections with people - for, in the hearing world I live in, sound is king. Without it, barriers and misunderstandings arise, and communicative isolation is inevitable. With any luck, the CI will help me break through that. But, to whatever extent I hear, I will be able to enjoy both: sound and silence. With the flip of a switch. As I stand on the brink of the unknown, this is one of my greatest reassurances: that, whatever happens in that world of sound, I will always have the silence as a reprieve.

One final note: in my last post I wrote about simulations of hearing loss. Upon talking with my parents (my local hearing "experts") on the quality and accuracy of that audio clip, I've decided to post a different one. This site offers insight into different levels of hearing loss. To get a sense of what I hear, go down to the "profound hearing loss with residual low frequency hearing" section. Yep, I'm all the way at the bottom of the list.

http://facstaff.uww.edu/bradleys/radio/hlsimulation/

Enjoy. The next time I write, the waiting will be over. I will be diving into that roaring, colorful pool of sound. See you on the other side.

Sound and Fury

It's been a long time coming, but last night I watched the documentary Sound and Fury, which was nominated for an Academy Award for Best Documentary Feature in 2000. For anyone who has not yet seen this film: please, please do. Run out and get it, in fact.

Sound and Fury explores the story of two brothers, one deaf and one hearing, and their families as they expore their decisions and feelings about cochlear implants. Chris Artinian is hearing, and he and his wife Mari (also hearing, but has deaf parents) have just found out that their young son is deaf. Peter Artinian, Chris's brother, is profoundly deaf, and he and his deaf wife Nita live very much in the Deaf world with their three deaf children. When Peter's 4-year-old daughter Heather begins asking for a cochlear implant, and when Chris and Mari decide to implant their deaf son, chaos breaks out in the extended family. Essentially, the hearing families in the film feel, implanting a deaf child is a necessity for giving the child viable opportunities to succeed in the hearing world. Withholding the gift of the implant, and therefore the gift of sound, verges on "abuse." On the other hand, the Deaf families believe that cochlear implants threaten Deaf culture, sign language, and Deaf identity. They feel that the choice to be implanted, and thus to reject one's deafness, should belong to the child and the child alone. Furthermore, the Deaf families feel, implants are another means of condescension by the hearing world, which treats the Deaf community as inferior. Cochlear implants, in this film, are not simply a "quick fix" or "medical miracle." On the contrary, the decision to get an implant boils down to the question of identity.

This film is well-known and extraordinarily well-done, and I've wanted to see it for a while. I'm glad I didn't see it before I was implanted, though. Before taking that first irreversible step, I did not need any more doubt or controversy thrown into my decision. Plus the video clips of the CI surgery were not something I needed to see before I went under!

Really, the entire documentary was heart-wrenching - even more so because it made me reflect on myself and the path I, and my parents, have chosen. The controversy and sentiments surrounding CIs were not news to me. Rather, witnessing them in this format refocused my perspective. I saw my own struggles reflected in the film's deaf people. When the little girl, Hannah, tried to interact with hearing (or implanted) children who did not sign, I felt her frustration and bewilderment. It came to me in the form of a memory - which, of course, it is. When the deaf father, Peter, told about keeping to himself as a boy because his hearing peers could not reach into his world, I saw myself there too. I recalled an excellent quote from Helen Keller, which a friend reminded me of just yesterday: "Blindness cuts us off from things, but deafness cuts us off from people."

But what I did not feel, watching this film, was the full extent of the Deaf adults' bitterness. I have somehow escaped that. Because I have many wonderful hearing friends, it hurt to see these Deaf people so sequestered from everyone who did not sign. It hurt even more to realize that this was not their own fault, that they'd never had the opportunities that I have. Despite their protests to the contrary, they were isolated - just as, to a lesser extent, I have been. Does their frustration justify their hostility to everything "hearing"? I do not know. I only know that this film stirred the old identity crisis within me. Within the first ten minutes, in which the anger of the Deaf parents toward CIs had become apparent, I sank my chin into my hands and said, "Now they're going to make me feel like a traitor."

And, in their eyes, I am. It's been a long time since I interacted with Deaf people. I understand sign language very well, but my own sign is no longer good, because I don't use it. I found myself relating more to the hearing families in the film. Strangely enough, though, this was fine with me. Perhaps I have chosen to occupy that odd "cochlear-implant world" in between the hearing and the deaf worlds, but this is an extension of how my life has always been.

In this film, I also saw my own parents, faced with the enormous challenges of deciding how to raise a deaf child. What decision would I make in their place? It's complicated. I do believe that the decision to get an implant should be a child's personal choice, rather than a parent's decision. In this way, I do not regret my upbringing in the least - even if a CI would have saved me some of my struggles, it would have been my hearing parents' projection of their desires onto my identity. I had to discover and decide that identity for myself. Thus, my decision to get a CI, even after a lapse of 20 years, has been self-empowering rather than imposed. However, I don't know that I could ever make my own kids go through what I did. I don't know that I could deny them the opportunity to function more normally, especially when the CI is most beneficial within that narrow language-learning window.

I do think there is a middleground, however, that no one in this film saw. It doesn't have to be either-or. Sign language or speech. The doctors, schools, and hearing families who advocate the CI at a young age also urge parents never to sign to their deaf children. They argue that sign language functions as a "crutch," so that the child will never learn spoken language. What these professionals do not realize is that children are such astonishingly adept learners that they can learn more than one language at a time. And denying children the access to any form of communication that they can understand, whether verbal or visual, is abuse. When I was young, one doctor told my parents to do exactly this, to implant me and not sign - words cannot articulate my gratitude that they had the sense not to listen. One of the implanted deaf girls in this documentary, even at five years old, had never heard of sign language. She was perplexed when she saw it. She did not seem to realize that she was deaf. I found something sad, something intolerable about that. Her hearing parents had decided, from her birth, that she must be hearing, like them. And, as a result, a huge shard of her identity was forced to vanish. I am no Deaf rabble-rouser, and there is also tragedy in the deaf child who cannot connect with her world, but still - how awful.

To the readers of this blog: just watch this film. And, after watching, what would you do?

The Sounds of Silence

It's been four days since surgery and I can't believe how good I'm feeling. I'm on my feet, no longer feeling as dizzy when I walk, and back to chewing most foods. Reading no longer gives me a headache, and the pressure wrap is off my head. I finally showered yesterday - the high point of my weekend, believe me! The CI is now a sore spot on the left side of my head, nothing more. Though I'm still on antibiotics and pain meds, and though I get tired more easily than normal, I'm so pleased at how quickly I've progressed. It's been a Godsend. Most blessedly, the ringing in my ears has stopped. For the most part. Someone told me that now I know the gist of the Simon and Garfunkel song, "The Sounds of Silence." Indeed I do. And I hope that pulsing, echoing, buzzing silence never returns - good riddance!

Now that I'm rested and my head is clear, I think it's time to try to make sense of what's happened to me since last Thursday.

The true miracle is that I was as calm as I was the morning of the surgery itself. A bit of Benadryl did the trick for sleep the night before (my anxiety-ridden self already hadn't been sleeping well for several nights), and I woke up in the hotel feeling remarkably relaxed. It's funny, though: regardless of how occupied I kept myself, with books and email and conversation, as the time drew closer my chest started to tremble. It's as if my body couldn't forget what was about to happen to it, even if my mind traitoriously did. (I'm sure the fact that I hadn't eaten since some ice cream late the previous night had something to do with this. I wasn't allowed to drink, either. Watching my parents eat breakfast only increased this physical tremulousness, and my lovely father was so nice as to tease me with the full water bottle he was drinking. Bad move, buddy.)

After taking a short walk in what ended up being a gorgeous California morning, we headed to the hospital.

(The BEFORE: my last moments with my left hearing aid. Notice the brilliant weather outside. What a sad day to be detained for surgery!)

I'll say it again, the Stanford hospital is a very open, airy, welcoming place. Once inside, I was still floating in a self-imposed cloud of calm. But even so, my nerves were rattling. Evidence: lipreading while I checked in at the ambulatory surgery front desk (and afterwards, while chatting with the nurses) was much harder than usual. I felt myself stammering, my eyes losing focus, trying to keep my anxiety in that nice little box where it could not escape. Once checked in, we waited and made pleasantries together in the waiting room until I was finally called back into pre-op.

My pre-op nurse was very kind and chatty, just what I needed despite needing to answer her list of obligatory questions. No, I don't have heart or liver problems. No, I've never been pregnant. No, I don't do recreational drugs. The only issue I confessed to was a fear of needles. We made small talk about Stanford and the area, about books and English. Several times she asked me, in response to my physical stature and cardiovascular signs, whether I was an athlete (a question that many other doctors and nurses asked over the course of the day, apparently). I smiled and said, yes, an equestrian. I don't know whether she knew what to make of that!

(After verifying for at least the fifth time, my surgeon marks my left ear as the one to be operated on. Yes, those are his initials. They refuse to wash off completely, even several days later.)

Another source of reassurance: hearing about my surgeon. He's a kind, well-respected guy - something which I could have guessed from my personal encounters with him, but something that was only confirmed several times in pre-op. My nurse, a operating room nurse for 30 years before moving to pre-op, told me that he's the only surgeon she'll work with for OR shifts these days. "He's the best," she said. "He treats us all so well. He's such a gentleman!" And, after he slipped in with a smile, talked to me for a moment, and gripped my hand, I tended to agree. The feeling that I was in good hands made such a difference.

(Trying to look confident even if the whites of my eyes are showing. I wouldn't be smiling if they'd put the IV in yet!)

By far the most stressful part of the entire day was getting my IV in. But we'll skip over that. (A summary: I managed not to faint.) A little more nervous small talk with my parents in pre-op, while trying to ignore the tubes and appendages connected to my body, before it was time. The nurses rolled me out, down the hallway, and through a series of automated doors. I felt almost as if I were being kidnapped.

I don't remember much of the operating room itself (thankfully) except that when I got in, the fear was starting to flow. I stared up at the lights overhead, which looked like huge suspended disks, and thought only of just how many shiny metal surfaces (read: knives and needles) were in the room. The doctors and nurses were all wearing masks, probably speaking to each other, and there was no way for me to hear or lipread them - I remember telling myself to remain calm, even as my subconscious screamed that I might as well have been transported to an alien planet -

Finally, the guy nearest me pulled out a pad of paper and wrote, "What's your major at Stanford?" I answered that it was English. He took a second and wrote, "Literature or composition?" We chatted a little bit, like that, and I felt a huge surge of gratitude for his perception and thoughtfulness. It was possibly the most human moment of my entire day. Then someone pulled out an anesthesiologist's mask, I breathed three breaths, and that was it.

I woke up feeling the typical post-anesthesia dreaminess, like I had been away for a hundred years and had only just been transported back into my old life. Only, of course, this wasn't any semblance of life that I recognized. If I felt any kind of emotion, it was annoyance. More specifically, annoyance that the blood-pressure monitor on my arm kept going off. If there's one thing that makes me shudder, it's a blood pressure cuff. The tightening and releasing pressure was my primary link with reality for almost an hour, until I asked the nurse to please make it stop. (Of course, she didn't.)

After a while, they had me roll over on my back from my right side. At one point a nurse came in to take a X-ray of my skull, to verify that the implant was in the right place. Apparently, it was. Overall, besides some nasty business with nausea during the later stages of recovery, the entire thing went excellently. The nurses had me change back into my clothes and wheeled me out of the hospital around 7:00pm. My parents and I returned to our hotel room, where I staggered into bed and made them promise not to poke or otherwise bother me. Then I was out.

One other thing I should mention: according to my dad, when my surgeon came out to the waiting room he was smiling broadly. While I was still under, likely still in the OR, he had fired the implant itself to see if the nerve connection was functional. And my nerve fired in response. It fired! So, looks like whenever I turn this darned thing on, it'll be working.

(The AFTER: my lovely Princess Leia cap and bandage.)

As I've already written about, I felt remarkably good the day after surgery, but unfortunately by the second day my energy level had dropped. The ringing in my left ear, which started on Friday afternoon, was unbearable by Saturday morning. I wasn't in pain, but felt too weak and dizzy to really stand up. I spent 80 percent of the time sleeping. Whatever I did, while waking, was consumed by that aggravating, bewildered, cerebrally-confused silence. My parents and I decided to travel home from California that day, regardless - though my head wasn't too pleased at the jolts and bumps of the truck ride, I was pleased that it learned to deal.

(So happy not to have a bandage on my right ear - and to wear my hearing aid besides!)

It still does feel strange to hear out of only one ear, and admittedly I've caught myself fiddling with my left side, as if expecting my left hearing aid to be there, turned off or otherwise asleep on the job. It's as if I'm searching for a ghost limb. Since the programming on my hearing aids doesn't give exactly equal sound and frequency input to each ear, I've been feeling off-balance at hearing only half of what I normally do. It's easy to feel detached from the events around me, too, or to inadvertently not pay attention to what's happening on my left side. Especially since the muscles in my neck are still sore and I can only look right.

(When the bandage finally comes off: a tefla pad covers the stitches on my skull.)

After three days, yesterday afternoon I could not wait for the bandage to come off. Besides the fact that it was getting uncomfortable, itchy, and my hair was starting to smell, I couldn't wait to see what my head actually looked like underneath it. We'd taken a few glimpses, of course, while readjusting the bandage and plastic cap, but the skin was still too tender to touch. What I found was slightly strange.

First of all, my left ear is still numb. There are no medications inducing this; it's just that the nerve sensation near the tip of the pinna is almost completely gone. My dad thinks that might be an unavoidable consequence of surgery, cutting a few sensory nerves on the way to drilling to the cochlea. Maybe I'll get the feeling back on that ear, but maybe I won't. When I touch it, it feels like a plastic ear. My fingers feel it, as normally as ever, but to the rest of my head it's as if the ear itself - my ear - is not there.

Second, the incision the surgeon made for my CI is so small. It's just a line of stitches behind my ear, and they barely had to shave off any hair. Remarkable. It should heal quickly, and the stitches should dissolve and come out within 10 days of the surgery. I marvel at the skill of the surgeon, to do so much work within a space of less than an inch and a half.

Third, and perhaps most creepily, is that I can feel the CI internal processor and magnet on the side of my skull. It's just a small lump, under my hair, and smooth - still a bit tender, but doesn't hurt. I can't stop my fingers from running over it. This, in a few weeks, this will be the interface between what happens in the outside world and what I experience inside my body. There's no incision on top: the surgeon must have slipped it into the single cut he made, then worked it up between my skin and the surface of my skull. It's all so elegant, so deftly done, that I almost can't stand it.

But this is a new definition of reality, and many marvels yet remain. Onward and upward!