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!