Friday, December 7, 2012

Some Rhodes Reflections

I haven't written on this blog for several months... but that doesn't mean it's been an uneventful fall. Far from it, both in terms of listening-related news and personal developments. I've been able to make some astounding progress with my cochlear implant, but perhaps the most telling factor about how "normal" this hearing business has become in my life is how I've felt gradually less compelled to write about all the breakthroughs. Not that they haven't been big breakthroughs - some of them have blown my mind. To summarize before I get to my bigger news and the things I'm now mulling over:

In October, at the suggestion of my auditory verbal therapist after seeing my most recent audiograms from June, I returned to my audiologist for an experimental remapping. I say experimental for two reasons: because it wasn't a remapping that was called for within my usual appointment plan (technically, I didn't need to go back until June 2013) and also because we were trying something very different from all the mappings I'd had up to that point. Basically, since I was born with a higher-frequency hearing loss, those frequencies have been the most curious/disruptive/difficult for me to get used to with the CI, and they're also the sounds that are the most important for understanding human speech. Hearing vowels is all very well, but most of the crucial consonants that tie words together and make spoken language intelligible: you got it, high-frequency. In an effort to bolster my performance with speech comprehension, my remapping in October "skewed" my CI programming to include a greater emphasis on the higher-frequency part of the auditory spectrum. It also increased my CI sensitivity by a notch. The results, for a few days, made me crazy. I went to bed tired from all the sounds and stimulation. It wasn't that I hadn't heard these sounds before, exactly; it was that they popped out in new ways, and that they were ever-present as they'd never been before. Listening to someone speak became like listening to a symphony of hissing snakes - I mean, consonants.

The first time I went to see my auditory therapist after my new mapping, I sat down and recited full open-set sentences back to her, much more easily than I'd ever been able to do before. Two weeks after that, she surprised me with reading not just single sentences, but entire paragraphs at a time, and once again my brain made the connections, picked up the sounds, and fed me the meaning. Though these paragraphs were composed of simple, declarative sentences, I understood right around 80 percent. It honestly felt like a miracle, or like magic, to be sitting there in that chair having the words come to me so effortlessly. The same thing has kept happening since, and last week she made the declaration that I'm ready to move on to more complex paragraphs - namely, not at elementary school reading level, but something more like, say, my old friend Harry Potter. (That experiment is upcoming in our appointment this week and I admit I'm excited. From speech therapy years ago to my summer of listening to the books on tape, Harry has wound up being my best buddy in all things speech and listening-related.) That meaning, real meaning, can be transmitted via sound instead of only via sight, text, written sentences and paragraphs: I think it will amaze me for the rest of my life. Over Thanksgiving break, while at work, the skills even carried over to the "real world," where I overheard my first phone conversation. It was just like listening to my therapist: I understood almost everything, and the feeling was so surreal. Also while at home over the break, I found that I could understand everything my mother said to me with my back turned, so long as I stopped and remembered to listen.

So, that's where I'm at. I don't think I've experienced such a rapid acceleration of tangible skills since first getting the CI. I want to revisit some of these experiences at some point, but before then my big news from this fall, without further ado:

I've been named a Rhodes scholar. I'll be heading to Oxford next fall to embark on at least two years of study, which is an opportunity so thrilling that it continues to elude my full comprehension. I'm already writing about this elsewhere, but for the purposes of this blog - and also my private thoughts and feelings in the last few days - I'd like to take a moment to contemplate it from a particular perspective.

Longtime readers of this blog might recall the last time I went to Oxford through a Stanford study abroad program, which happened a mere three months after I got my cochlear implant. The decision to go abroad was not an easy one; I was terrified of British accents, finding ASL interpreters in a BSL world, being so far away from home, finding an appropriate support network overseas, and so forth. Fortunately, the decision to apply for the Rhodes came more easily from an accessibility perspective, and I've come to realize that the few months I spent in the UK two years ago empowered me in so many ways. I'm certain that I will feel far more empowered after two years with a Rhodes scholarship, though I'm curious to find out what British accents will sound like to me now. (Maybe I will fall in love with them. You never know!) In fact, my fall of Rhodes application essays and interviews has been its own story of empowerment. Along the way I think I discovered, more strongly than I ever have before, that if I present myself within the full capacity of my abilities and ask other people to help me figure out how to confront the challenges of my deafness, things will fall into place better than I expect. Though I'm still working at many things myself, including this whole hearing-with-the-CI business, I continue to feel more and more convinced that the "disabling" aspects of my deafness need not impact me that strongly if I can shape my situation to suit my needs. I view myself as far, far more abled than disabled, and while challenges can and will continue to arise I know I'll continue to find ways around, or through, them.

Which is why I've been a little mystified by some of this Rhodes business. The Rhodes Trust itself has been beyond supportive, and I'm cheered to have already met some very smart, considerate people who are committed to helping me succeed while at Oxford. (It still feels so surreal to say that!) I've approved of most of the coverage in the media, while raising my eyebrows that my life could be so fascinating to anyone who doesn't know me. I've needed to navigate some requests for interviews by providing remarks via email or meeting someone in person, but I've discovered that whenever I show up to chat with a stranger face-to-face I'm more than able to have an enjoyable and coherent conversation. That feels beyond fantastic. However, some things have continued to convince me that many hearing people just don't know how to address the concept of deafness, or of disability in general.

I wrote in my Rhodes application essay that I wanted to become a writer committed to exploring access, equality and difference, and the nature of communication itself. Stealing from the essay: "Our world often does not know how to talk about these things just as it does not know how to talk about disability, about differing abilities and strengths, distinct personal styles, and challenges." Being thrust into the spotlight, as a deaf person and (sometimes) as an inspiration/role model/etc., has convinced me that the aforementioned statement is true. Hearing people mean well, but they don't know how to refer to someone who is deaf. (Hearing impaired? Hearing loss? Hearing challenged? How to be politically correct?) They don't know how to bring up the subject. I see hesitation in their faces when they ask me about it. Sometimes they don't bring it up at all, but ask other people who know me about it - which makes me feel shortchanged and more offended than if they'd simply expressed their curiosity to my face. They fixate on the details: how do you go to class? how do you ride a horse? how did you learn to speak? how are you even having this conversation with me right now? They marvel that someone who is deaf could have accomplished this. (A backhanded compliment; deaf people aren't so dumb, are they?) They think using a sign language interpreter is a marvelous thing. At least they've fallen short of asking whether I read Braille. (A longtime private joke between me and a few of my interpreters.) Though the reverse is also true: they don't understand what being deaf means and ask me to call them, or give them a phone interview, or make a guest appearance on the radio. Ummm...

I am not writing this post to sigh or complain about the burden of explaining myself. It's just like if I met a highly accomplished blind person; I'd be interested in finding out more about his or her world, which I don't know very much about. But it's the cluelessness, and the occasional fixation on me as deaf first and foremost, that strikes me as strange. Case in point: as I wrote, people do not know how to talk about disability. They simply don't know much about it. The fact that I can be accomplished in so many ways and also be deaf is a rare combination. I know that, and I won't shy away from acknowledging that nor from describing my experiences to other people. However, I don't think the category (successful + deaf) should be such an exception in the mainstream world - accessibility oftentimes just has to get better. My abilities far outweigh my disabilities, and while my deafness is at the very core of my being, it's also a rather monochromatic lens. As someone who does want to write about these issues in the future, I will continue to struggle with this problem of self-representation.

To conclude this post, I can't help but be reminded of several sentences I wrote in an essay when I was sixteen. This essay, titled "Deaf and - Smart?" framed my agony over the phrase "deaf and dumb," something that deeply offended me when I was young. (It still does, but I've learned not to be defined by it. Thank goodness, I and many other deaf people I know seem to have proven it wrong by now!) It got quite a lot of attention at my school at the time, but even now - nearly seven years later - these words continue to ring true:

I don’t think I have ever been able to pinpoint the exact attitude I hold for my deafness.  It has always simultaneously been a minor detail and an insurmountable obstacle... I cannot count how many people I have met who have some preconceived notion of deafness or seem determined to treat me a certain way despite the fact that they have never met anyone with my disability. Either they behave as if I were more or less than I am, or a perplexing combination of both... Although thankfully most humans fall more toward the neutral zone between these two extremes, it is rare that I meet the individual who sees me as I am: not made of glass, but not completely independent either. These people, who choose not to view their world only from their limited outlook, are... the rare ones, and the ones whom I have learned to value and cherish.
I still find that I cannot pinpoint the exact attitude I have for my deafness - but I'm grateful that my sixteen-year-old self already saw that so clearly, and also saw the enormous use that writing has to confront this ambiguity and to challenge how people perceive disability in the world. I'm also grateful for those special people, those rara avis in my life, especially at this time of looking back but also looking forward to Oxford and beyond. Maybe someday I'll find the words to express what exactly I'd like to say, both about hearing loss and other unrelated things, but fortunately I've got many more years for that.

Tuesday, August 28, 2012

It's About Total Communication

"Do you still use total communication?" an old friend of mine asked me this past week.

It'd been a while since I used the term, but I said (and signed), "Yes. Yes, I do." We sat down and proceeded to catch up over coffee, and it occurred to me that "total communication" is, in fact, the best way to describe the varied conversational strategies I seek and use in my daily life. It also occurred to me that I haven't blogged about it before, at least not beyond a passing remark or two.

The term total communication (it even has its own wikipedia page!) refers to an idea that tries to find a middleground between the long-fraught territories of oral versus sign language-based deaf education. It was in vogue during my stint at the New Mexico School for the Deaf in the early '90s, and I also remember it playing into the philosophy of the summer camp for the deaf I attended from ages nine through 14. (By the time I entered mainstreamed schools in elementary school and onwards, total communication had firmly ingrained itself into my family's lifestyle and there was no going back.) Many of the communication strategies I used in my younger years and continue to use today are closely tied to total communication, which seeks to offer deaf individuals with a range of communication tools and strategies, from sign language (ASL/SEE/pidgin/whatever) to oral and auditory skills, to lipreading to reading and writing, to visual aids and captioning and all the technology that's available at the moment. Even cued speech, too, which I personally don't know but have seen a few friends use. (It's wild.) Basically, any form of communication goes – when you're living with a profound hearing loss, you need to make use of all the tools you can. You need to be multidimensional!

I've been reflecting on this multidimensionality lately, as it continues to be very marked in my life. With the recent medical/treatment/education shift to cochlear implants and other advances in technology, my opinion is that total communication is no less important than it used to be. Deaf culture-based arguments aside, a cochlear implant is not a "fix." It does not completely "cure" a child of his or her deafness, or an adult for that matter. I'm still as deaf as ever once the device switches off. When it's on, it has placed a massive amount of sound waves in my possession, but the sound quality still doesn't equal natural hearing. I still reach for my bag of tricks. As I get older and settle into my new sense of identity with the CI, I find that I'm strangely fond of my ability to switch gears at will. Listening is coming, slowly. I can lipread. If I'm with another deaf person or with a close hearing friend who signs, I sign. I see it, understand it, use it, and find it useful. Otherwise, I speak and that works perfectly well. I watch for nonverbal cues. I dodge any complications with making phone calls by texting and emailing constantly. Depending on the situation and the person, I may find myself communicating in many different ways. Being flexible with communication has empowered me in many different ways, and I find that I'm fondest of the people who can be perceptive and flexible in their communication strategies as well. It's a useful skill.

I keep dwelling over the state of deaf education these days, hoping that the new focus on cochlear implants doesn't smother all the other strategies that can make a deaf individual successful. It scares me to think of dumping a deaf kid into everyday life armed with his or her CI alone. Heck, even if that deaf individual doesn't require sign language after receiving a CI, signing is still worthwhile. (Signing is worthwhile for hearing people too. If only because it's fun.) And, switching to the other hand while returning to the Deaf culture argument, a fiercely sign language-based lifestyle doesn't justify ignoring the prospects of communicating via listening, lipreading, or writing. It's not one thing or another: the more ammo you have in your arsenal, the better. I used to be ambivalent about this idea, as one might find looking back over the very first posts of this blog, but I'm not that way anymore.

I sat down with my friend this past week, as I've sat down with a few other longtime friends this summer. We both talked out loud, we signed, we probably found ourselves lipreading and watching each other closely. It made things easier for both of us. I walked out thinking of a multiple-choice exam in which the answer is "all of the above." Total communication. That's it. The best part was doing it so effortlessly.

One more scenario: this morning I went to drop off a big package at the post office. Standing in line, I grew distracted and didn't realize the clerk was calling me to the counter. Then I grew distracted again and needed to ask him to repeat what he said. These two things must have tipped him off. I saw his expression change a bit. He started speaking more clearly. Then when I was walking off, he raised his open palm to his chin, then extended it outward: clearly the sign for thank you. Once, at a different time in my life, I would have almost kicked myself. Had I been that obvious, made my disability that apparent? Had I failed to pass completely, to integrate myself seamlessly into hearing person land? (Passing is a topic I ought to blog about sometime.) This time, though, no matter. I grinned, somewhat nonsensically signed thank you back, then walked out thinking, I love it when random hearing people do things like that.

Total communication.

Saturday, August 18, 2012

No Sight, But Sound

Right on the heels of my last post, I had a real-world experience in which, yes, I did listen and, yes, it did make a difference. I went to my optometrist two days ago for a routine appointment to get new contact lenses. While sitting with the nurse/technician, giving information about my current medical status, I noticed that my deafness must have somehow become apparent: she suddenly became cautious about communication, started gesticulating to accompany everything she said. At this point in my life, I usually don't care too much when hearing people are painstakingly trying to make themselves understood, but it still can be amusing to watch the signs they invent for things. Some surprisingly accurate and intuitive, and others… Then I took my contacts out, and listening became more essential. I had forgotten to bring my glasses, so I was feeling rather more aware than usual of the information coming in from my ears, as well as hoping that everyone would keep within a certain distance so their faces (and gestures) wouldn't appear too blurry.

After a few elaborate machines testing different dimensions of my eyes and vision, which inevitably made me think of listening booths and how much better I am at these, I returned to my initial room to wait for the optometrist. He arrived, we talked, and then the phoropter (yes, I had to look that word up) descended on my vision. I couldn't look anywhere but straight ahead at the letter chart, the As and Qs (that sometimes looked like Os) and Ts, and I couldn't see his face as he spoke to me, so I prepared to proceed by habit and by what I knew would happen. Read what he showed me, and so on. And, while little other knowledge than that is necessary for an eye exam, I found that this time the communication was different. Before the CI, and even in my early CI days, when I couldn't see someone's face, I'd talk blindly at them, sending out my words to, well, wherever they went. The person would say something back; I'd hear an indistinct muttering from somewhere in space, but no matter; I'd guess what they might have said and carry on. This time, though, looking through the tunnel-vision lens wasn't such a bluntly isolating experience.

"Read this line for me. Okay. What about this one? Is that blurry? Tell me which one is clearer. Do you want to see them again? Now look at this for me." I caught almost every word the optometrist said during that part of the exam. His disembodied voice penetrated my consciousness with startling clarity; instead of bulling my way through the exam – R, S, T, L, N, E, yes, that looks fine, answering nonexistent questions along the way – the interaction took on the feeling of a conversation. I was taking in information through my eyes, but I was also accessing information separately through my ears. Multitasking! We were working through this together. My communication access hadn't cut off with loss of sight.

The exam ended, I regained my full range of vision, I put my contacts back in, said goodbye to the quasi-signing technician, and walked out to the car – just another day at the doctor's office. But even now, thinking of that voice reaching me like a guiding hand extended through empty space: however simple the scenario was, it makes my mind implode with a sort of wonder.

Monday, August 13, 2012

Novus Modus Operandi

There is so much that continues to be unfamiliar to me. My brain continues in its attempts to be plastic – and sometimes it quite astonishingly is, while at other times it runs up against its longtime limitations. This summer, I've continued to notice how my preferences and modus operandi translate into my default interpretations of the world. As I've written about before, given a choice between seeing and listening, my brain's gears seem to be stuck in sighted mode. They grind as I try to prompt them toward sound. Sometimes I find this very frustrating: history stands in my way, through auditory memory but also through the habits formed from experience.

Still, I've noticed that the "half-and-half" approach that manifests itself in my daily conversations is continuing to improve. (It's probably not actually half-and-half. Maybe seventy-thirty, but with decreasing margins between sight and sound.) During meetings at my internship this summer, my coworkers know to face me when they're talking, but occasionally they forget. They'll look down at a computer screen, or away at a whiteboard, or start talking before I can properly see them. At first a part of me grows tense and prepares to ask for repetition. But that's before I realize I've actually heard and understood the words they said in that visionless gap. My brain has switched between modalities, sight and sound, and somehow the information ties together seamlessly. Not always, and not with people who I still find tricky to understand, but often. How dynamic is that?

Another trend from this summer: as I live at home for probably the last time before grad school and real life, my parents have been becoming sneakier about that sight-sound equilibrium. My mother often doesn't make sure I'm looking at her before asking a question anymore. She'll sometimes launch right into speaking, on purpose, often when she knows I can't see her. Sometimes she'll refuse to let me look at her after she begins speaking. After the first twenty years of my life, this is different from the norm. I still remember days when excessive hand-waving and shoulder-tapping was common in our household, and still remember going to deaf camp and other deaf gatherings where session leaders would flash the lights in a room, stamp their feet on the floor, or drum a fist on a table (in addition to waving) when they wanted to get everyone's attention. That's just the way things function in the deaf world. For a long time my natural strategy was to wait for some visual input implying that I should pay attention, then zone on to the new speaker or object with my eyes and all of my energy. My peripheral vision was usually on alert, and still is, but sound played a secondary role. If anything, it could only alert me to some unseen change in the environment that I should look at. It rarely told me what that change in the environment was. I couldn't pay attention to something, or gain any knowledge of transmitted information, without seeing it.

Now, those rules are changing, and my internal rules need to change also. The only thing is, the time it takes for me to shut down the visual sense and start paying attention to sound is about equivalent to the time it takes me to swing my head around and look at it. I hear; I look. I don't hear and listen. Listening needs to become a more primary way of taking in information, but as of now it is still not. My knee-jerk response overrides auditory processing, and by the time I hear someone speaking and then remember to listen the sound is gone. I can't access that sound through memory; I fumbled my real-time chance.

However, if I'm prepared, if I switch off the sight instinct and focus on auditory processing, I can do it. We got back to the car after dinner one night a few weeks ago. My father had forgotten his glasses in the restaurant, so as he ran back inside my mother and I sat in the darkness. One rule of my existence up to this point has been that I don't talk in the dark. I haven't been able to, and I don't think to try. Sitting there, me in the back seat and she in the front passenger seat, my mother started talking. "Turn on the light," I said automatically.

"No," she said. "Listen." I understood that part, and sat silently. No cheating now, in the darkness. My mother kept her phrases and questions short, ten words or less. They addressed parts of our day or our lives at that point in time. But they were otherwise open-set, and I kept on getting them. Actually, I got them with astonishing ease. My focus turned to my ears, we sat there in the dark silence, I listened to her familiar voice: everything seemed to glow with the force of its own unexpectedness.

A few other times, I've sat down at home and intentionally said, "I'm going to have a conversation without looking at you." I need to do it intentionally, to override those old habits. Otherwise I'll never listen instead of seeing. We haven't gone as far as sitting in the dark, but we might as well have. Again, in silence with that familiar voice, knowing that I can ask for repetition if needed: the surprise of being able to do it sneaks up on me every time. I would never have thought, three years ago before I considered getting a cochlear implant, that someday I would be able to talk to my mother just by listening to her. It's far from effortless, but at the same time it's surprisingly easy, given my expectations. I even need to say it out loud to make it feel real: "We're having a conversation. Not just listening drills, but a conversation. And I'm not looking at you."

Now maybe I need to sit down in the dark and the quiet with a few other friends. There I can run my ear over their voices, see what those voices feel like, and start to listen when I can instead of watching.

Wednesday, July 18, 2012

Just Give Me a Call

How many aspects of my daily life I accept as normal, even obvious, until someone comes along and jolts me out of the illusion. Using the phone, for instance. I have never used the phone outside of some basic practice conversations with the CI. It's hardly even something I think about anymore. Other people talk on the phone; I don't. When it rings in our house I yell to my sister to go pick it up. I stand at the receiving end of conversations, watching my companion intently and imagining a little bit what it would feel like to talk to a disembodied voice like that. Occasionally a friend or acquaintance tries to call me, and I shake my head at their number on my screen before ending the call and texting back, "Hey."

I do sometimes wish I could make phone calls, but the concept is still so far removed from my personal experience that the desire passes quickly enough. It's like wishing I could breathe underwater. Useful, but I'm not a fish. Besides, modern technology is so text-based that I rarely feel too deprived. Many of my friends text or email more often than making phone calls anyway, and many profess to hate talking on the phone. There are downsides to such a text- and information-obsessed society, but I often find that I don't complain about them too much.

Still, there are the disorienting moments. Shooting off an email to a new coworker and receiving the reply, "Why don't you give me a call?" Having technological issues in the office and being told that I oughtn't to be shy, that I ought to pick up the phone right now and call the help desk and resolve the problem. Earlier this spring, submitting job applications and being asked when I was available for a phone interview. Having a new friend tell me, "Call when you're on your way," or "Call if you have any problems." Ummm…

Beyond these personal interactions, the world's infrastructure is grounded in hearing-person assumptions. I often feel stuck by the fact that applications, forms, and other information records require a personal cell phone number. I hesitate, knowing that whoever gets that number will ignore my requests to text and will call me instead. Then I put down someone else's number, usually my mother's. (She deserves accolades for taking all my calls.)

With the exception of required phone numbers for registration, these moments with hearing people simply require a few words of clarification, and then things proceed without a problem. Still, I occasionally find myself asking a non-family member/close friend to make a phone call for me, or telling someone that I simply can't do what they're asking and need them to send me an email instead. Depending on the person and the impression I want to make, such experiences can be surprisingly hard. I dislike drawing attention to what I can't do, and moreover dislike that those normative assumptions should exist in the first place. I suppose it's pride that gets in my way. It's even a flabbergasted sort of annoyance. But – I'm deaf. You should know that, you should have thought, have anticipated, before asking me to do something so obviously silly and impossible.

But, nothing. My reality is not other people's reality, and vice versa. And thank goodness for that – may we both learn to get used to it while not setting limitations on each other or ourselves.

That said, "text only" or "I prefer email" next to my phone number really does mean, guess what, exactly that.

Wednesday, June 27, 2012

Remapped, With ClearVoice

In the flurry of life post-graduation, I admit that something important fell through the cracks of my priority list: my two-year follow-up remapping two weeks ago. Here's a belated report.

While in the midst of moving out, attending graduation parties and other on-campus events, seeing family, and saying goodbye to friends, I walked into my audiologist's office two Thursdays ago, sat down, and felt like the entire CI process had settled into well-worn routine, lacking the emotional energy and physical tension that I remember from my first few remappings. That fact struck me rather acutely in the waiting room: I remember two years ago, right after I got the CI, when my series of follow-up appointments defined the erratic pace of that summer like an ill-functioning and desperate metronome. Rattled and a bit unhappy at home, overwhelmed (even while fascinated) by all I was hearing, I looked forward to each appointment like a lifebuoy promising my progress at the end of the next bout of waves. If I could just grit it out to the next remapping, things would get better, sound better. And here, now, I hadn't had one of these remapping appointments for a year, and I was approaching it almost like an afterthought. I hoped the new program would help fill in some gaps I'd noticed in my speech perception. I was looking forward to trying out ClearVoice, Advanced Bionics' new processing software targeted at maximizing listening ability in noisy environments. But that was all. After it was all done, I slapped on my CI (routine; no more apprehensions or jolts from the roaring influx of noise) and walked out of the office.

So how did the appointment go? It went well. Few surprises. This is the stage I have reached. Apparently I've more or less stabilized in my mapping program, which is normal. My audiologist made a few changes, amping up some frequencies and reducing others, but the biggest tweak for the day was the addition of ClearVoice. In a nutshell, this software employs an algorithm to evaluate the levels and different types of background noise entering the CI via external microphone. Once certain types of noise reach a certain threshold, the software will dampen those sounds while attempting to preserve the incoming sounds that do matter – especially human voices. Background noise (and ongoing annoyance with background noise) continues to be one of my biggest daily listening challenges – I had heard varying reviews of ClearVoice, most of them good, and I'm not one to buy into much-publicized software upgrades as necessarily game-changing, but if it could help combat that onslaught of external noise, I couldn't wait to try it.

The listening booth test I had with my new ClearVoice program was the best I've had – though, mind you, I still say that with a grain of salt. I tossed back those routine testing words (baseball, hotdog, bluebird, ice cream, etc…) well enough, though my audiologist started introducing some complexity with rising and dropping levels of volume. Random open-set sentences and single words, I took a decent stab at. I would have liked to ask for repetition, and the word combinations my brain came up with were often silly and improbable, but for being with a thoroughly unfamiliar voice outside of any context I'm pleased that I didn't sit there completely at a loss! After this usual set of testing exercises, my audiologist reentered the room and apologized; he was going to ask me to do a new set of tests, which I'd never attempted before in my life and which were ridiculously hard. (Bring it on, I thought. Even if I totally fail, at least I've moved on from "baseball" and "bluebird.")

The first of these tests featured a series of recorded speakers, both male and female, saying sentences at very rapid speeds. After a few seconds' break to allow me to recite what I'd heard, the voices would barrel on with more breathless sentences. Talk about listening, mentally translating, and responding before preparing to do it all again! I was expecting to get absolutely nothing, but my brain came out willing to play, and fed me some (baffled and inaccurate) guesses that I passed along before being slammed again. The second test was, indeed, really ridiculously hard. It began with a male speaker saying a series of words and short sentences, in relative quiet. Then, progressively, an assortment of indistinct background voices would rise in volume, competing with the main speaker for my attention. I tried to cling to the main speaker as his words submerged beneath these invasive, rude voices. Come back! Inside my mind, I stepped back and watched myself head-on colliding with the overlapping sounds that, whatever I did, refused to separate into separate elements of a chemical compound. I felt schizophrenic – or, less melodramatically, like I do at large crowded parties. It was like listening to the garbled "wah wah wah" adult voice from Charles Schultz's Peanuts, trying to push it aside like a solid object, say a curtain, but watching it flood back like a stubborn liquid, like water. The exercise wasn't something I expected myself to be able to do in the least (and neither was the first), and I wrapped up my booth testing feeling bemused, once again, at what the typically hearing ear (and brain) can do. Separating all these different channels of auditory information, filtering out unnecessary information, telling the Charlie Brown voices to shut up. It's amazing.

But the weirdest part of the remapping this time? I walked out of that appointment, went to a few grad parties, and admittedly forgot all about my CI. The first few days after a remapping are always like the first few days after getting a new pair of glasses, for example: something's a little off in your sensory perception, and while you know the change makes the world sharper, better, it tosses you off balance until your brain adjusts. That feeling was there this time, but I succeeded in ignoring it. However, later on in the evening, at a big senior dinner event, I was sitting at a table with a group of friends when I noticed that the background noise had suddenly dimmed. I looked around, a bit startled. The activity was just as lively as before. People chatted, visited different tables, moved around. There was some music in the background. And when I spoke, my own voice jumped out at me, distinct from the mess. When I stopped talking, and when my friends immediately next to me stopped talking, it felt like being underwater. Was something wrong with my CI?

That's when it hit me. Oh. So this is ClearVoice. "Say something," I told the friend with whom I'd been talking. She raised an eyebrow, but complied. Her voice thrummed above the noise. "Now stop," I said. Her voice dropped off. Listening once again became like experiencing the world muffled by a wool cloth. Nearby voices in, out, as they spoke. Background intentionally quashed. A piece of computer software was manipulating the way I heard, choosing what was important and what was not, and while this felt strange and even disorienting it was also a little bit wonderful. ClearVoice had suppressed my real-life Charlie Brown wah-wah-wah noises, since I couldn't do so for myself, and a bit of the struggle to quash the distraction was gone. In the listening booth, I hadn't felt the program kick in so strongly; likely it'd been confused by all the competing voices, uncertain of what qualified as "noise" and what it should focus on. Maybe it hadn't had enough time to recalibrate. But at that party, I walked around surreally feeling like I'd gotten in touch with another aspect of how normal hearing might work. The cocktail party effect, in my grasp at last – or to an extent. When people spoke, I felt like I really, truly heard their voices standing alone.

Now, two weeks later, the rough edges of my remapping have smoothened, new sounds have popped out like always, old sounds take on renewed texture and interest – all this is normal, but I haven't yet felt ClearVoice kick in as strongly as that first night. I tend to structure my life to avoid excessive noise, but in the future I suppose I'll need to seek it out! I'm tempted to stop at this point in my post and muse about the nature of being bionic, the nature of physically feeling that computer interface step in between me and my world, but that'll need to wait for another time.

And, two years! (Literally, tomorrow, two years to the day that I got turned on. Wheeeeee.)

Wednesday, June 6, 2012

Class of 2012: Some Reflections

Astoundingly, I graduate college in less than two weeks, and along with that milestone I've been spending some time reflecting on my undergraduate years. It's just that time again, with sunshine and final papers and another year ending. College has been quite the ride, and in many ways it's been far better than I could have imagined. When I came to Stanford, I really could not have conceived of all the places I would go, classes I would take, things I would see, and people I would meet. I couldn't have imagined myself taking on some of the challenges of the last four years, much less experiencing some of the joys I have encountered. (Hearing among them!)

Yet, at the same time, I reflect on the last four years and get a disturbing, bittersweet feeling of missed opportunities and not-quite-fulfilled desires. College has been more than I could have imagined, but in some ways it has been different. As a deaf person who grew up completely immersed in the hearing world and who was mainstreamed since kindergarten, I always knew I would go to an all-hearing university. Enrolling somewhere else like Gallaudet, or not going to college at all, were not options. Yet I've found that facing the success-driven world of Stanford, as a person with a disability, has been challenging in ways that I, at eighteen, did not fully anticipate. Stanford students speak of a campus culture characterized by "Stanford duck syndrome," in which sunny facades of achievement and, yes, effortlessness mask the constantly paddling feet of hard work and even private turmoil. It's a campus where it can be difficult not to want to appear perfect, casual, and at ease.

Being deaf at Stanford has been hard. I'll be blunt: at certain times, it's been lonely. The overall experience has gotten far better than during my freshman year, as I've learned more about myself and developed strategies to navigate an all-hearing world. Doubtlessly the CI has contributed to that rising self-confidence: the conviction it took to want to hear, and to begin to hear more than ever before, has encouraged me to open up to my world, to take risks, and not to discount myself based on longstanding notions of what I can and cannot do. It's made several things in my life much easier, and some of the experiences I've had have been so empowering. But, as I knew when I started this journey two years ago, having a cochlear implant has not made me a hearing person. It never will. It has not made me one of those socially easeful, communicative, listening and talking and wisecracking and responding people that I feel like I see on campus every day. In some ways (despite all of the soaring highs), college has not been what I wanted. And most of that has to do with not being able to engage with my peers and friend groups and teammates and acquaintances in the way I wanted.

It's difficult to describe the experience of being surrounded by such bright and amazing people and feeling unable to communicate fully with them. Lipreading is truly a lifesaver. Listening has made lipreading far easier. I've surprised myself by how skillfully I can handle one-on-one interactions in particular, by cherry-picking friends who are easy to lipread and often going all day in bliss and without much feeling of inherent limitation. But those strategies don't conquer all. What about the group dinners, where I'm always several beats behind if I understand at all? What about the interesting people I've met whose accents make them nearly impossible to talk with? The on-campus speaker events and plays and panel discussions that friends invite me to at the last minute, where I must decline because I cannot request an interpreter? The parties in dark rooms with blaring music where communication is impossible and all I want to do is melt into the floor? The dorm spirit and camaraderie, which some part of me has irrationally resented only because I've felt excluded? All of these are parts of college life. They're parts that, to some extent, I've missed. I've seen them happen around me, but for four years I've felt like I've been spectating on forms shrouded by an opaque curtain. While I will graduate in two weeks with an immense sense of pride, joy, and accomplishment, I'm also a little haunted by things like this, things that embody what Stanford means to other people that it has never meant to me.

Part of this bittersweet feeling, I won't deny, might be my fault. I tend to be shy, reticent, and even aloof. Too often I retreat and "suck it up" rather than confront. I do want my friends to sign (sometimes desperately), but I rarely sign myself, and I'm not very good at flaunting my cultural Deafness, whatever there is of it. I haven't always made myself crystal clear on what I need and want. That is not necessarily the best way to deal with deafness, which is often such an invisible disability in any case -- so much so, that it really might take an exuberant personality to jump up and down with neon lights flashing and sign language guns ablaze in order to prompt the hearing world to engage and "get it." I'm not that person, or at least I haven't been.

Regardless, life is what it is, and I'm doing my best to let this troubled feeling go, of exclusion and of having passed through my undergrad years at Stanford while letting (or watching) so much of it slip through the cracks. I love Stanford, and I couldn't say enough about the things I love about Stanford -- I'm more than thrilled to be coterming at the Farm next year. And sometimes a dose of perspective, and not comparing directly to hearing people, is in order. I was in a cafe three days ago, studying with a friend, when a stranger approached the table where we sat. Being me, I think I noticed as soon as I saw him that he had hearing aids. My chest rose slightly. He didn't speak, but placed an index card down on the table before us. "I am hearing impaired and out of work..." I read, but didn't need to see any more. I understood what was happening here, or part of it. And I was excited to sign, here in Palo Alto where it felt so unexpected. You're deaf? I signed to him.

He took a step back. My friend and I had been chatting enthusiastically five seconds earlier; my hair was down and my CI was out of sight; I realized I must have looked just like a hearing person. Yes, I'm deaf, he signed back, his eyes widening as he looked at me. You too?

Yes, me too.

Born deaf?


Not hard-of-hearing? And you speak well, like a hearing person? He looked at my friend, as if wanting her to pass judgment. Are you in school?

I answered yes; yes, for the most part; and that I went to Stanford. We chatted a little more. Throughout, I could see that part of him didn't believe me -- didn't believe that I was deaf. I was on the verge of taking my CI off and showing him. After getting a bit of his life story and exchanging a few parting pleasantries, he told me, Stanford. My deepest congratulations. When you graduate, Deaf people all around will give you their respect, for doing something like that. (This is a rough translation.) I felt like protesting, saying that Stanford wasn't all that out of reach, or at least shouldn't be, but in reality I was floored. And the encounter, so close to my graduation, made me pause and reflect.

As ill-at-ease as I've been feeling about some aspects of the last four years, I can't call myself anything but blessed. Unexpectedly so. Yes, college has been hard, and of course the hearing world doesn't stop after Stanford. The challenges of living with a hearing loss, as diverse as they are, will go on. But, those aside, I'm just so, so fortunate to have had the opportunities that I've had. From supportive parents to speech therapists and audiologists, to wonderful interpreters and engaging teachers and professors, to amazing close friends... the list goes on. May I never lose that perspective, even when I'm left wanting more.

Also, may the next four years be even better than the last.

Friday, June 1, 2012

"Duh." Or Not.

Funny how fast time flies. Today I had my two-year follow-up appointment with my CI surgeon -- just routine, to be sure I'm still doing well with this piece of metal in my head. How much has changed since I sat in that office two years ago, calm on the surface but really struggling with a mess of anxieties, hopes, and fears. As I prepare to graduate from college in a few weeks, it's so nice to reflect on my progress if only in that one area of my life. Everything is looking fine, so onward!

Now, I don't have that much to say about the appointment itself, save for the (reiterated) fact that this hearing thing is still very much an ongoing process. But I still find something irksome about the way doctors' offices -- even the ones that specialize in hearing and hearing loss! -- interact with deaf and hard-of-hearing people. I noticed this time and time again during the days immediately pre-CI, in which my nervousness about my upcoming surgery was slightly exacerbated by some people's carelessness about communicating with me, and unfortunately it's still there. My surgeon is wonderful and a great communicator (by which I mean very straightforward and very aware of his own clarity and articulation), but I can't say the same for everyone else.

First of all, the waiting room. I checked in with the receptionist, sat down (facing the door, as always, so I could see and lipread anyone who approached), and realized anew the absurdity of having an audiology clinic in a building where none of the nurses give any sort of visual signal to alert patients that their name is being called. They come to the door, open it, and then say the patient's name in a quiet and unobtrusive voice, one that I hardly heard over the scattered conversations and the CNN broadcast in the room. Then, if there's no immediate response, they shrug and walk away (this happened once or twice for patients who were seemingly not there or not answering to their names at that moment). I sat fiddling for twenty minutes, and a few times thought a nurse might, just maybe, have said "Rachel." I got up and asked, only to have them shake their heads at me. I consider myself very situationally aware for a deaf person, and I know how to place myself so I can watch when listening might fail me, but it's not fair to enter a room with people who might have any sort of hearing loss and expect verbal words alone to suffice. How about nurses who know how to fingerspell patients' names as they come in, or at least wave or give some other kind of signal? It might not always be necessary, but it'd be more accessible.

Next, one-on-one interactions. I walked back into the exam room. My nurse sat me down to gather basic information and enter it into the computer, and I noticed immediately that she had an accent. I was placing my bag down on the floor when I heard her speak, and the vowels sounded a little off, a little different. I turned back to her and asked her to repeat herself, a little bothered that she'd started asking me questions when I wasn't looking at her. (Hello? Post-CI follow up? With a person who has a hearing loss? And lipreads? Should be fairly obvious what to do here.) She rattled off the question again, very rapidly and not making much of an effort to look me in the face. I still didn't understand what she'd said; I was still hung up on the accent. After one or two more tries, she laid down her pen and very clearly said, "Do you need an interpreter?"

"No," I told her. "I'm fine. Could you please speak a little more clearly?" That time, she did look me in the eye and speak a little more slowly (maybe wondering after my actual powers of hearing/intelligence), I got the question, and we moved on.

The whole interaction lasted less than two minutes, but it left me miffed. Having hearing people rattle off questions without looking at me is something I've grown used to, but for goodness' sake this was an audiology clinic. Where employees should know better. Where people with hearing losses, some of whom doubtlessly must lipread, come in every day. Frankly, copping out and asking me if I needed an interpreter, without first making a clear effort to be understandable, didn't show as much consideration as I would have liked. Communication is a two-way street. If you know that the patient you're talking to has a hearing loss, and if it's your job to interact with other such patients, at least try to meet that person halfway before calling the "authorities" or chucking her off to someone else. I've long had mixed feelings about interpreters being a barrier between me and direct communication, but it doesn't help when hearing people give up on the cooperative communicative venture so easily. A little more personal responsibility for making communication happen here, please.

This post isn't meant to be anything besides a critique of the bizarreness of the hearing status quo and how it relates to deaf/hard-of-hearing people. But it goes to show that things I sometimes think are "duh" -- and that should be "duh" for professionals working with hearing loss -- many times aren't. I'm thinking of the social (rather than medical) model of disability here, in which accessibility barriers arise not from an individual's physical disability but from the conventions of the surrounding world. I can be perfectly coherent and communicative; I just need to be met halfway sometimes. And, honestly, who among us doesn't?

Anyway. My two-year remapping is forthcoming (in a little less than two weeks), and I'm very excited. It's always interesting to see how the sound quality changes after a remapping, but the element I'm by far most anticipating is finally getting my hands on ClearVoice, Advanced Bionics' new software to (hypothetically) make conversations, human voices, and other pertinent sounds easier to follow in background noise. I'm not expecting it to be a total game-changer, but it'll be fun to try. In addition, I'm hoping the remapping will address a few subtle gaps that have arisen in my hearing spectrum in recent weeks. Only during auditory therapy do I really notice them, but fingers crossed that the new program will be able to fiddle with those issues. Until then!

Thursday, May 17, 2012

"Building the Musical Muscle"

A friend recently sent me this TED talk by Charles Limb about cochlear implants and music. At the very least, it's an informative look into the complex acoustics of music and how they might translate into CI electrode-speak.

Now, I won't say too much about what I perceive to be a slightly condescending note in Limb's attitude toward deaf people. (Or perhaps "condescending" isn't the right word, but it's - something. I suspect those who know me well will sense it, too.) I also won't say too much about some disagreements I have with some of the subjective-perception arguments he makes. As a cochlear implant user, the segments Limb describes as sadly, horribly "identical" for anyone with a CI... actually are different for me, too. I can tell a violin from a trumpet. I can identify the flattened state of the altered melodies he plays, even though I can't describe it much further than that. And, although I agree with the assessment that music rehabilitation is something that's left out of CI rehab in general (I myself have hardly done any), remember that this is me speaking as a profoundly prelingually deaf individual. That is, an individual with no auditory memory at all, no real prior experience with music from which to base those auditory judgments. And all CI users are different.

Those contentions aside, Limb's main point is correct: music does not sound the same for CI users as for typically hearing people. (Does anything? No.) It's a fact of where the technology and the field is right now: a cochlear implant, while absolutely amazing in what it is able to accomplish, is nowhere near as sophisticated as natural hearing. And, whatever we do know about the auditory system, it pales in comparison with the complexity of neuroscience. A good point to keep in mind when asking what CI users can and cannot hear! Defining precise "hearing," and attaining it, is such an elusive game. Music, I confess, does not sound amazing to me. It's there, for sure. It's present. It's noise with more shape and function and reason than it used to have, though it's far more nebulous than speech. I frustrate myself trying to articulate, to pinpoint exactly what it "means," in the same way that a word can "mean" something. It's decent, and at the most it's something I can appreciate.

But always the question:  What do these insights mean for me? How do I respond to this self-perception of my sensory insufficiency, of the inaccessible fragments of this rich world? While I do hope that researchers progress with both technology and rehabilitative strategies, the fact is I'm not going to stand before the abstract idea of music (for that's what it is to me still, something abstract) like Tantalus ever striving after a sip of that receding water. I'd like to keep listening and learning, but I refuse to dwell on irrevocable circumstance. I'm thankful for the other beauties there are in this world - a world, I assure you, very far from Tartarus, however excited I might be for future technological advancements.

Monday, May 7, 2012

Listening: A Collaborative Effort

So I should be working on my honors thesis right now (a major contributor to my silence as of late), but this was too cool not to share. This morning I went to my auditory therapy session, which as usual took on the role of helping me feel on track with, you know, actually improving with my listening skills. Too often I feel like the complex world of hearing (the world that hearing people live in, with background noise and multiple speakers and fast talkers and just too much speed and noise) leaves me floored and insufficient. Returning to basics shows that I'm doing better than I think.

We started out with a set of exercises we've done before, with completely open-set sentence discrimination. This is a level I've progressed to in the last few months, and considering everything it's an exciting milestone, even if it can be frustrating sometimes. (The sentences aren't complicated, but are more along the lines of "the sun shines during the day and the moon shines at night" or "you floss your teeth to get pieces of food that your toothbrush can't reach." They contain everyday objects and phenomena, but their subject matter could be coming from absolutely anywhere at all.)

First go: CI only, hearing aid turned off. I sat in my chair, admittedly tense as the words flooded past. As we talked about afterwards, the start of each sentence was like bracing myself for a wave. As it rushed by, I tried to stick my fingers down in the murky fluid, to grab onto passing fragments of water, seaweed, shells, sand - anything that would give me a clue to the overall meaning. This extended simile aside, I felt like I usually do during these exercises: like I was trying to glue together shattered pieces of glass. Isolated words jumped out at me, words like "teeth" and "sun," but most times it took many repetitions and much patience to get the whole thing. My analytical mind kicked into gear: noun here, verb there, that was a prepositional phrase. More often than not I'd emerge with the skeleton of the sentence, its overall structure, before I could flesh out what it meant.

Over several taxing minutes, we worked through ten sentences. Overall, not a bad effort, but not great either. I felt drained; there seemed like no way to prime my mind to sort through this open-set material, time after time. But now my therapist suggested that we try something else: turn my hearing aid on. Listen to ten more sentences with both, and see what happened.

Okay, why not? I've long known that listening with both ears is easier for me than listening with one, even though the sound input that I get from my hearing aid is far less than what I get from my CI. I expected that the results would be marginally better - a little easier, but not dramatically.

Here's what happened. The sentences, as random as before, flowed past - and time slowed. That's the immediate subjective description that comes to mind. With two ears working together, no longer was I crashing through that very fast-traveling wave, then gasping in retrospect and trying to figure out what I had heard. Time no longer split that way, with present perception floundering and auditory memory going into overdrive, juggling the present and the past in pursuit of meaning. Instead, I had the distinct experience of hearing and understanding the words in real time. It wasn't perfect, but the difference from trial #1 was astonishing. I heard, I understood, I moved on. I waited for the words to come to me instead of bracing myself for their impact. My hearing aid - my slivers of natural hearing, which in all honesty still sound smoother and more acoustically rich than the sometimes-harsh dynamism of the CI - made a world of difference.

Now, how could this be? I walked away thinking. It certainly never happened before with two hearing aids. When I take off my CI and listen with my hearing aid alone, it sounds awful. Squashed and diminished and flat. But when the two work together... wow. I was floored. I'd noticed the effect before, but not like this. What was hard for both ears separately (well, impossible for hearing aid, doable but challenging for CI) suddenly became relatively easy. How could my brain be so good at piecing together two very different ears to produce something cohesive and understandable? Where did it learn how to do that? How does something like that even work?

Now I think I can imagine what hearing people hear: that sort of dynamism (CI) combined with the smooth, lovely quality of normal hearing (HA). However my brain is combining those two elements, it's working. SO COOL.

Tuesday, March 20, 2012

Looking Back on Goals - Again

Lately I've been growing frustrated (again) by the fact that my listening progress doesn't feel like it's moving as fast as I'd like it to. This perspective challenge has been present all along with the CI (where am I going? how have I improved?), but it arises and recurs in waves. There are days in which I feel unbelievably optimistic, and others in which what I want hovers out of reach. About to graduate from college, I look out at the "real world" and all the things in it and often feel intimidated, since communication can still seem like a barrier. Of course, success is possible anyway, and I've gotten better at getting creative in the last few years, but the fact remains that some things are still not straightforward.

Yet, this morning, I had a session with my auditory therapist in which I voiced some of the above insecurities. In controlled situations, the listening progress is there, but it often feels slow. We talked a bit, and then she flipped back through her file and pulled out a piece of paper. On it were written my goals for the CI from a year ago, or maybe a year and a half. They were as follows:

1. Recognize more individual words based on sound alone

A million times yes. It really depends on the good old auditory memory, but the fact that I can now hear a word and know what it is, based on listening, is amazing.

2. Be able to have base-level conversations in quiet with a familiar voice

Yes. Although this often doesn't apply to the real world, I've known for a while that if I sit inside with either of my parents or someone else familiar, I will be able to hear, understand, and respond to the things they say to me.

3. Hear and recognize more high-frequency sounds than I used to

Definitely yes. It's astonishing, how much I've started taking them for granted.

4. Encounter fewer situations in which people ask me, "Did you hear that noise?" and I reply, "No."

Yes! I can't remember the last time this happened. More often, it's the reverse: people ask me if I heard that noise and I internally tilt my head and laugh and then say, "Yeah, I did." Like, duh, my CI is awesome. Or I actually do tilt my head and listen and say, "Oh! Yes! That's a cool new noise!"

5. Feel more comfortable and confident in a group

This is probably the only one for which my answer is "not so much." There are just too many variables, although various strategies have helped me cope better in groups than I used to - including knowing my limits and being able to engage and disengage as necessary.

Number five notwithstanding, these are all things that I found unimaginable two years ago. Looking back on that progress is empowering, even if, as my therapist pointed out, of course the goal that I'm always subconsciously thinking of, that I'm seeing around me, that I'm wanting each day, is to sit at a table with a group of smart, engaging, talkative hearing friends and understand their rapid-fire conversations and join in like a pro. But sometimes it's better to measure progress from the ground up. These are some hefty peaks scaled.

Reality check: achieved. For now.

Sunday, March 18, 2012

Girl Walks Into a Bar...

Glass windows. Line of people outside, huddled under the awning out of the rain. Damp shirts and moisture-splattered jackets. What, we're going in here? Yes. Yes? Yes, do you want a drink? A drink? Um... Through the door. People smash in on all sides. Bodies everywhere. I need to step back, their faces seem pressed up against mine.

Oh, there you all are. I lost sight of you in the dim light. No, I don't think I'll put my jacket down. I'm fine. Is there music on, the way some of you keep swaying back and forth? No room to sway, but you're doing it anyway. But all I hear is the constant din. Noise, that's the only word to describe it, just noise. Some people at a booth are having burgers and fries, and I feel like I'm practically sitting in their food. I'm sorry, I'm sorry, but no one apologizes in a place like this. I'm in all of your laps. The group bunches so close together we might as well all be standing in a closet. I wring my neck just to see the person standing next to me. The conversation spins faster and faster.

Laughter. Voices. All of it smashed together, a processed, ground-beef patty of noise. I can't pitch my voice just right to be heard over it. Assuming that it is possible to hear anything through this - I can't hear myself, can't hear anyone, and it astonishes me that anyone can. Oh hi, how are you. Every time I say something, you say what and I talk louder, practically shouting, and you tilt your head to hear me. I'm talking into the hole in your head, into your head and the pinna of your ear, not into your face, and it bothers me. Look at me. Watch my face. Someone asks if I want something - oh, it's food, some kind of food - and my hand raises in the sign for food and drink. Are you getting anything to eat or drink? But you don't know sign. Shoot. I shout again. How much easier this would be if I could just fingerspell and have you U-N-D-E-R-S-T-A-N-D. But I can't see anyway. Touche.

Neon signs. Television blaring. Advertisement swoops up for NCAA March Madness. Barista swoops in and out with drinks. Walls are a rose pink. I stare at the artwork. Most of it seems a touch raunchy, advertising drinks with suggestive names. Friends lean in past me to talk to each other. I've just shaken the hand of a guy whose name I keep missing. He's cute enough, but - no, never mind, not if he talks like that. Not a snowball's chance of understanding him. I'm weaving through the sheets of people. All of these vertical bodies, no room to be horizontal. My eyes hurt, and it feels like I'm squinting through smoke, but there's no smoke in here, only darkness. Yet the way everyone else talks seems so natural. What? Repeat that, please? Um, yeah. Okay. Everyone's laughing. What did you say? Never mind.

And, finally - you're heading out of here? Now? Can I go with you?

(How I feel when I go out to a bar with friends on a Friday night. What a wonderful college pastime. And my friends ask me why I'm boring and stay in on the weekends.)

Wednesday, February 15, 2012

What is Hard (Versus What is Easy)

So easy sometimes to make some amount of progress and then realize how far you have to go. What is more, so thought-provoking sometimes to reflect on progress itself in terms of what is hard and what is easy.

Things are easy now that weren't before. In auditory therapy this past week, I got several strings of words as long as 11 or 12. And got them perfectly. My auditory memory was working overload and could barely regurgitate them before the whole string vanished entirely, but... 12 words?! That's a really big deal. The other day while riding I heard (and, more importantly, understood) my coach yell directions across the arena to another rider. I grasp full sentences over the PA more and more often at horse shows. It's easier to relax in daily situations with noise; no longer is it so jarring and strange.

Still, the moments of clarity notwithstanding, much of listening is still a matter of fighting for every scrap of information I get. It's pulling myself up a sheer rock face by my fingertips. It's teasing something small and slippery out of a hole it doesn't want to leave. And then I get my prize and, tired and a bit proud of myself, look around at the world around me and feel abashed. What I have just accomplished is nothing, absolutely nothing, compared with what's possible with sound.

Really, the thing about hearing that makes me marvel is how, when it's working properly and all circuits are firing, it's all rather easy. This never struck me too much before the CI; listening and hearing was just something I didn't do, something I relegated to the realms of hearing people. I never considered how it works. Think about it. Sound waves compress, travel through the air, enter your head through two small holes, make a series of bones shift and membranes vibrate and nerve cells pulse - and then the brain calculates the frequencies and combines them and evaluates what they mean. And then you understand and respond within an instant. It's astounding. I watch my hearing peers and marvel at how easy everything is. How thoughtless. It feels beautiful, in a way. Picking up the phone while driving, or otherwise multitasking, and having a rapid-fire conversation with your mother. Navigating through overlapping voices, engaging in high-speed banter. Sitting in a noisy, dimly lit restaurant at a large table and speaking across to someone five seats away and somehow - I have no idea how - picking up on their voice shooting at you amidst the din. Isolating that voice and recognizing it and holding on to its coherence. There's a peculiar kind of intimacy about those kinds of daily exchanges. I've been watching such things lately and wondering, now that I have some vague sense of that facility of auditory access, what they would feel like for me. Honestly, it fills me with an unexpected feeling of wonder.

And then I think of myself, inching up my rock face. That sense of difficulty versus ease: the moments that it occurs to me are the moments that I feel farthest away from hearing-world immersion, because what is most arduous for me is most thoughtless for them. I want it to be easy, as easy as fitting together words and writing them on the page, and I know that it will never be. I want to know what easy feels like. Gliding in and out of sound and, most importantly, meaning. Dancing with the facility of words. This may be what I'm thinking of - and then I remind myself how many other things in my life are wonderfully, unbelievably, laughably easy. And then I stop and, indeed, have to laugh a little.

But because something is hard doesn't mean that it is less worthy of joy. It was hard, but I did it, versus It was easy, but I did it. In both cases, I'm left with simply, I did it. And that doing is enough, at whatever level it takes place. Here's to not taking our skills and actions for granted. And here's to "it" - listening, hearing, understanding, communicating - becoming easier and easier. :)

Tuesday, February 7, 2012


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.

Saturday, January 28, 2012

Deaf Dining: Mozzeria

Today marked probably one of the most unique and interesting restaurant experiences that I've had. A friend of mine had seen the following article about Mozzeria, a new pizza restaurant in San Francisco's Mission district, and, along with another friend, today we decided to go:

The cool thing about Mozzeria is that it's owned by a deaf couple, most of the employees are deaf themselves, and nearly all of them sign. The two friends I went with today are both hearing, but both sign rather well (both have been former roommates of mine :) ), and I think the three of us were all excited to see what a signing dining environment would be like.

I admit, walking into this restaurant and immediately having the hostess sign to us, then raise a printed paper in case we were hearing non-signers and hadn't understood, was a pretty amazing moment for me personally. I felt myself shedding much of the communication anxiety I have when I go out in public, especially out to eat when I know I will need to interact with a waiter. Talking with hearing waiters is usually fine for me, and I've done it for years, but I do miss things they say - when they go on about the special of the day or ask other unexpected questions, I'm thrown off and rely on my hearing friends to fill in for me and/or translate. Today I was pleased to discover how reassuring that added measure of communicative clarity felt with sign. Is this the way the world feels for the hearing, so much more open and empowering?

Our brunch/lunch at Mozzeria was in many ways a typical eating-out experience: we took our menus, ordered, ate, and paid the bill amidst our own conversation, interactions with the waiter, etc. But the fresh surprise I felt, despite myself, every time a waiter or other employee reappeared and started signing to me - signing! - made me feel more alive to, as well as relaxed in, my surroundings than usual. Even though I've long detached myself from the Deaf world for a variety of reasons, the truth is that I never feel more at home than when the people around me are signing. I saw busboys and chefs walk by signing across the room to each other. A few of them had hearing aids. Several of the tables were filled with deaf people, and one older lady waved over and started a conversation. I can't remember the last time I interacted casually with other diners at a restaurant. I don't know if it's at all typical for hearing people (minus a very odd extended conversation my family once had with a total stranger in a Chinese restaurant in DC), but for me chance interactions with hearing strangers in public places are rare. At one point, the deaf group left and a hearing party came in to replace them at the table beside ours, and the three of us joked that now it was they who were out of place. Not that Mozzeria did not cater to non-signing hearing people - our waiter was hearing and spoke as well as signed, and the restaurant ran just like any other. But the vibe itself was different.

All of the above points were reiterated for me when, after our stint at Mozzeria, we decided to head over to another place for dessert. This was in some ways another highlight of the day (since after all the dessert was composed of New Mexico-style green chile apple pie! in San Francisco!), but ordering from the hearing woman behind the counter, zoning in on her face and nevertheless suffering a bit of a communicative bobble when she asked if I wanted my pie a la mode, showed me how nice it had been to go to a restaurant so centered around sign. If only once.

Now I hope I can go back sometime - and maybe take another hearing friend or two :)

Thursday, January 26, 2012

It Is What It Is

It's funny, right after posting about that forwarded petition on audism (which left me brooding over the whole idea of Deaf isolation/hearing-world immersion), I got myself dressed up and headed over to a networking event on campus. It was hosted by a women's group that I'm involved with, and although I'm never quite excited to go to those things, I figured I'd resort to the old standby: suck it up, go and be seen, and try to handle it all as graciously as possible. But when I got there I quickly found that it wasn't going to be my kind of night. The room was loud and crowded, full of strangers talking in groups, many of them too difficult to lipread even if I could focus amidst the noise. The CI was more of a distraction than a help. On top of that, I was informed that there would be an assortment of activities and guest speakers for a fair deal of the time - not something I was prepared to handle at that time of night without an interpreter. A bit deflated but not exactly surprised, I left early. My night did go on to better and more useful things, but the thought racing through my mind as I walked back to my room was, No wonder it's so easy to retreat into Deaf culture.

Not that that's an option for me. It isn't, nor would I want it to be. Still, I do have my moments when it seems that the hearing world isn't at all made for me - a sentiment that I know resonates with other deaf and hard-of-hearing people. As I've gotten older, I've gotten better at maneuvering through these disconnected moments and figuring out how to avoid them. A lot of that involves advance planning (for interpreters and other accommodations), some self-advocacy, and sheer self-knowledge. The unexpected does come up, regardless, the moments in which I find myself stuck and really not able to communicate as I'd like to. And, as uncomfortable as the entire rhetoric of Deaf culture can make me, I'll be honest in admitting that during those moments it can be easy to think of groups of D/deaf people with more fondness than groups of hard-to-understand hearing people, at least in the abstract. It's easy to want to be isolationist. It's easy to be hurt and angry simultaneously at everyone and at no one in particular. It's easy to want to reject the system that seems not to care about your needs, much less provide for them. It's easy to want to band together with someone - anyone - in defiance of the linguistic and communicative barrier that accompanies hearing loss.

All of this makes sense to me in one tumultuous, emotionally chaotic moment. And then I take a deep breath, count my blessings (of which there are many!), and engage in some form of the serenity prayer. This does not define me. There are ways around the barrier, just as there have been scores of times before. And, sometimes, it just is what it is.