Four Years!

I know I haven't updated this blog at all recently (and some people have asked me about that), but this milestone warrants mention: four years!

Four years ago, after my sophomore year of college, I could not have imagined myself at age twenty-four, in England, going into an audiologist's office in Oxford to get my now-annual cochlear implant remapping. I couldn't have imagined all the turns my life has taken within that time, nor that my listening really would progress past the chaotic initial stage. One thing about this blog is it offers a terrific way of looking back over my former self. For fun, here are a few tidbits of what I wrote four years ago, in July 2010:

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

[...]

I feel like I'm inhaling the sound and holding it in the core of my chest. It resonates through my whole body. It drowns out my thoughts, consumes my being. All I can do... is sit numbly and surrender to it.

[...]

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

Phew. For all the early wonder of those days, I smile and feel happy that I'm not there anymore. On the other hand, today I got on my bike here in Oxford and went into the clinic and chatted with a few charmingly British audiologists (one of whom taught me a few BSL signs while I regaled her with my American-isms). Then I tried my hand at listening to a few auditory exercises (in British accents, of course; I can't say I did very well with those in the open-set category), and then hooked up to the computer and got my first remapping since I left California last June. The audiologist increased some of the quieter sounds on the map, adjusted several of the frequencies, and added ClearVoice back in, which I'd taken off before, and so far I'm enjoying it. The more subtle sounds in my environment are definitely permeating my awareness more than before, meaning that I walked out of the audiology clinic thinking, Wow, there are so many distinct voices in here. And also, My gosh, I am so noisy, even when all I'm doing is putting my bag on. After a remapping, I always get that disoriented, giddy, strange, noticing-all-things-audible-about-the-world feeling all over again. Sounds I haven't bothered to notice for a while jump out at me, and new ones surface along the way. I'm sure it'll start to feel exhausting by the end of today, but for now it's pleasantly humorous.

(Also, can I say a word about how nice it is to go through this CI programming process with the NHS...? Once I actually managed to get an appointment, it was smooth sailing. I might get back into some audioverbal/speech therapy here, too, which should be interesting. Maybe I'll come back from the UK with a British accent!)

And a quick auditory update on the last year, you say? Well, British accents, British phrases, many other international accents, the sounds of double-decker buses and endless church bells around Oxford, music in cafes and noisy undergraduate conversations, coughing in libraries and lecture halls, more new friends' familiar voices, the sounds of crowds and minaret bells and the sea and different birds and regional tunes and so many other noises while on travel -- all of these, and more, have figured into there! I still lipread, yes, and always will, but, I must say, my world (on both sides of the pond) is so much richer for hearing it and working on understanding what I hear. Onward!

And Summer Rolls to an End...

Well, lazy summer has drifted by, bringing with it a new set of experiences. When I make myself do it, I find that I can listen to and understand the things my family say to me around the house. I'm pretty sure I've noticed a couple of new sounds this summer.

While camping in Utah over the last week and a half, I felt struck by the sheer silence of the backcountry wilderness. Sounds like my own breathing, my own footfalls, stood out to me more than ever before. Life seemed to stand out starker than ever in the open skies and cliffs of Utah, and so did its sensory impressions: sound, sight, certain slants of light and certain textures across the earth and the mountains. I thought I knew silence, and I still do, but just like everyone else I've been lulled into the rhythms of constant surround sound. When a different pattern emerges, I stop and listen. And how odd it was, I must admit, to encounter silence in a world of sound. Silence belongs to my own mind, to the smooth glidings of my thought when my CI and hearing aid are off; I am not used to it belonging to the outside world as well. Every sound, then, took on its own character and richness out in the backcountry.

Also on the aforementioned camping trip, I noticed myself listening to and responding to unexpected streams of speech. My dad, hiking behind me on the trail, would say something, and oftentimes I'd turn and ask what it was. Oftentimes I realized I did this out of habit. If I'd only given myself time to process and think about it, I would have understood what he said (and often did understand anyway, even if after he'd started to repeat it). Other times, I held back from this habit and - lo, there it was: "This sky is beautiful." Yes, I would agree, without turning around, it is.

One day on this camping trip, we hiked out to one of the arches in Arches National Park in Utah, where a large swarm of visitors had settled to gape and take photographs. The hikers would venture forth, one by one or group by group, to take photos under the huge arch with the landscape sprawling out beyond. Much camera-swapping took place; many strangers obliged to take other strangers' photographs, as people will in those sorts of places. At one point, I found myself standing on the verge of the flurry, surveying the clouds and the sky, and then I heard a voice, quite unexpected, speaking to my left. "Will you take our picture, please?" it asked. I heard, and I understood. "Sure," I said, before turning around, and then glanced over to see a pair of young women, probably about my age, holding an iPhone out to me. Whoa. I had just acted and responded like a hearing person would have. And it had come completely naturally.

Such moments sneak up on me by surprise, time after time. Also sneaking up on me is the end of the summer and my impending departure for Oxford. I had the opportunity to visit the UK earlier this summer, to get disability accommodations in order for Oxford and to meet some of the university and Rhodes administrators I will be working with over the upcoming two years. Something was different then; I noticed that, as opposed to my quarter abroad at Oxford three years ago, my ears were attuned and listening to the British accents in a way they hadn't before. I could feel my brain working out various people's cadences, as it might a puzzle, and sorting out, with a slight delay, what they had actually said. And listening made deciphering those accents easier this time, even as I was more aware of the auditory richness involved in such a challenge. (How good it felt to get back to talking with Americans! Even if some of the British people I met were truly lovely.) I have no doubt that the challenge will continue as I arrive in Oxford in a few weeks' time. But bring it on. Rambling post or no, let the experiences continue to accumulate!

Three Years!

Three years ago today, I stepped into the audiologist's office at the Stanford otolaryngology clinic and heard with my cochlear implant for the first time. If "hearing" is the right word for that jarring, abrupt, disembodied sensation of nerve pulses and electrical signals, that is. I had no idea what to expect from that first experience of sound, and I remember walking around campus later that day, texting friends in a flurry of exhilaration, trying to express what this felt like. Stopping by the Stanford shopping center, going out for dinner with a few friends to take advantage of being near campus, trying to function amidst my buzzing brain and growing headache and disorientation. And I also remember going to bed that night, my head throbbing as it returned to silence. I stared at the ceiling for a while, unable to sleep, and tried to process what had just happened to me. Then a thought, searing and brief and rapidly suppressed, surfaced in my mind: what had I gotten myself into?

Three years later, today, I arrived home in the evening and told my sister, "Hey, let's sit down. Talk to me."

"About what?"

"Whatever you want. Just keep talking. Speak clearly. Speak up. I'll listen."

A tad bit dubious, she started, and I looked out the window and listened to her voice. Her words spilled out, a regular stream, telling me some stories she and a friend had swapped earlier that day. I hardly need to say: completely open set. I sat there and did what I've learned to do: let the words wash over me. Didn't worry when I missed a few, gathered tidbits about whatever information I could. She talked and she talked. Each story was a few minutes apiece. And each time, she stopped and I looked back at her and blinked when I saw her face. Those words, the ones I had heard, had been hers. After giving myself a bit of time to appreciate the moment, I repeated back to her what she had said. Not verbatim, but gathering enough details, understanding the story arc and its purpose, stringing together what I had heard. And then:

"Yep, that's right," she said. "That's what I said."

I've thought, said, and written this a thousand times in the past three years, but before this entire crazy experience, never would I have anticipated, never would I have imagined, never would I have expected...

Here's to the rest of 2013 and to 2014, too.

"Not Broken"

A few weeks ago, an email appeared in my inbox: it was a friend and former classmate from Stanford, who along with two other students had been invited to participate in the Creative Activist Network's Bay Area Film Challenge, a five-day competition in which seven experienced student filmmaking teams from around the Bay Area would embark on the project of filming, editing, and crafting a five-minute documentary. The film challenge was sponsored by Participant Media, among other entities, and encouraged its teams to tell stories of creativity and progress, for the greater social good.

When this friend (herself a media/film studies and English major at Stanford) asked me if I was willing to be the subject of their documentary, I felt very flattered. And, once again, hey, why not? My own time commitment was minimal - sitting down for an interview, allowing the film crew to shadow me around the barn for riding practice, showing them around my apartment, helping put them in touch with other people who knew me for purposes of more video footage. Certainly it was nothing compared to the adrenaline-rush experience of running around scheduling interviews with people and somehow trying to get a coherent, high-quality documentary edited and subtitled and churned out within five days! The exciting part was that, when the film reached its final stages and ran past the judging panel, it took overall first place in the CAN Bay Area Film Challenge. That I never expected! I just saw the finished product for the first time today and very much enjoyed it:

So, props to "Team Tomorrowland" (Alex Simon, Carol Tan, and Stephanie DePaula) for such a lovely and well-accomplished filming and editing effort! I've also got to thank the friends, coaches, interpreters, and other Stanford people who agreed to help with or be interviewed for this project. And of course, many pats and carrots need to go to my mare Scarlett for being photogenic (film-o-genic?) and making me look good. Not entirely sure what I ever did to warrant such attention, but it's fun to watch such a nice video!

TEDxStanford!

Back in January, when I first got an invitation to give a TED talk at Stanford's TEDx event, my gut reaction was, "No way. Public speaking?" Then immediately after followed the thought: "But this is TEDx. I've been invited to give a TED talk." I wrestled with myself for a short while, but within the day had decided that I couldn't turn the opportunity down. What better place than at Stanford, with friends there to support, in such a dynamic setting, to take on once and for all my fear of public speaking?

The TEDxStanford event took place last month, on May 11, and was an incredible day of fascinating ideas, brilliant people, and well-delivered talks. I went at the end of the day, and felt sick for the entire hour before my talk, but then walked onstage and felt so, so good:




I'd been profoundly afraid of public speaking for a while - many people are, but my fear stemmed from shyness and also from a painfully riveting self-consciousness that my speech isn't perfect, that it isn't like other people's, that it might not be understandable. I'd often stumbled over myself in previous presentations out of sheer nerves, always preoccupied with the question: Am I speaking clearly enough? How is my speech? A wonderful speaking coach from the Stanford TEDx event helped me think through my talk and how to rehearse and deliver it, and by May I'd practiced it enough times to say it forwards and backwards, in my sleep, while driving, probably while swimming underwater if I wanted. The feeling as I walked offstage to a standing ovation, after giving certainly the best presentation of my life to date, was extraordinary.

"Being In Between"

Quite a rapid-fire succession of guest posts and guest articles recently. Here's another I wrote, for the website and blog for the Stanford Initiative to Cure Hearing Loss. I wrote this post in honor of Better Hearing and Speech Month during the month of May, even if it wound up going online the first day of June:

https://hearinglosscure.stanford.edu/2013/06/your-story-rachel-kolb-on-being-in-between/

Many thanks to those on the SICHL web and social media team who invited me to do a guest post and made this possible. To be perfectly honest, these feelings of being in between, of not quite being able to allot myself to one category or another, have made my life far richer and more interesting than it would have been otherwise, as challenging as the experience has been sometimes. Grappling with ambiguity, in whatever form it comes, from the academic to the personal, does make life a constant stream of contemplation and discovery.

"How Can I Help You?": Perspectives from a Patient with a Hearing Loss

Reaching the end of my time at Stanford and scrambling to get things done, so this blog is long overdue for a post about my three-year CI remapping a few weeks ago (!!), plus a CI-related study I participated in at the medical school here, but alas. I'll get to those soon. For now, I'm excited to post another piece of my writing that just came out in the International Journal of Medical Students. Read on for some of my thoughts on lipreading in the medical setting, as well as the importance of doctor-patient communication:

http://www.ijms.info/archives/v01i02/v01i02a08.pdf

The International Journal of Medical Students is a relatively new journal, only in its second issue, but I'm thrilled to contribute and share insights with medical students, doctors, and medical administrators worldwide. I've always been blessed with good health, but just like anyone else I appreciate the value of clear and direct communication whenever I do visit the doctor's office. Whether one has a hearing loss or not, many of these principles of understanding and interpersonal connection hold true!

O Alaska!

Things are starting to accelerate. I went to see my auditory therapist this morning and, after working on a few fine-tuned open-set short-phrase exercises that targeted specific sounds that have been more difficult for me to recognize, we moved to what has honestly become my favorite listening exercise: open-set paragraph information. If you'd told me not too long ago that I'd be able to listen to streams of speech, understand them, glean new information, and actually savor the stimulating challenge of such moments, I would have told you, Are you crazy? The crowning moment this morning: my auditory therapist read me a few short informational paragraphs about a random subject. In this case, the subject was Alaska, but that's all I knew about what she would say to me. She stepped behind me, where I couldn't see her at all, and began to speak.

I now know that the U.S. purchased the Alaskan territory from Russia in 1867 for 7.2 million dollars. I know that Alaska is twice the size of Texas. I know that Alaska is home to a multitude of natural resources, particularly ore mines, and that it was a destination for the gold rush after California in the late nineteenth century (although many people who went there went broke, even if some found gold). I know about the colorful flowers that appear in Alaska in the summer. And so on... I couldn't have told you any of those things before this morning. They were not familiar tidbits for me to recognize.

I learned all of these things by listening alone, without any context or any other information.

AND I got them all on the very first try.

Sitting there and listening to these foreign pieces of knowledge enter my mind, and somehow penetrate and linger there, gave me a feeling of total wonder. This is what language does. This is what language is. Being able to listen to it, learn from it, and use it, all in real time: wow is all I can say.

Hitting the Radio Waves

I still find this deliciously ironic: earlier this winter, I made a radio appearance. And talking about my experience listening with a cochlear implant, no less. The show aired several weeks ago via Stanford's KZSU station, but it's now available online:

http://www.stanford.edu/group/storytelling/cgi-bin/joomla/index.php/shows/season-4/355-episode-410-listening.html

Aside from my main segment, scroll down to the bottom to catch the "bonus" piece - something I helped make with a good friend, and former roommate, of mine when she made an audio essay for a class last year. It's my favorite of those two if I do say so myself, particularly because of how special it was to work on the piece with her.

Listening to the show air was a remarkable experience (aside from the fact that I was on the radio to begin with!). A friend of mine works as a producer for the Stanford Storytelling Project, which airs these "State of the Human" radio shows each week, and on the night this particular show went live she invited me to the campus DJ station to sit amidst all the machinery and big speakers and listen to it on the air. Of course, she also graciously offered me a transcript, both for my piece and everyone else's. Following along wasn't hard at all with those printed words to read from, and I found myself getting into the music, sound effects, and vocal inflections. A very different style of storytelling than I'm used to, but still very engaging. I got to put on headphones, which I've never worn for longer than a few seconds because they used to feel uncomfortable and used to make my hearing aids squeal. I was surprised to find that they worked very well, sometimes too well, with my CI's T-mic microphone. The sound was direct, crisp, and booming, something I could get used to. (Worked less well on the hearing aid side, because the aid kept squealing per usual. So nothing has changed.)

Overall, the night not only introduced me to something new and challenged my sense of the possible - it was fun! And I've always perceived radio as this very foreign, very alien thing... Never mind that I turn on radio music all the time in the car now. I even have my favorite stations to listen to. :)

100th Post!

When I started writing this blog almost three years ago, in late May 2010, I could never have imagined the experiences and milestones I've since achieved. And, in celebration of that sentiment, and also in celebration of 100 posts, here's a story from this past weekend that epitomizes what those three years with the CI has been able to do (and that also epitomizes the budding sense of potential I feel perhaps more strongly now than I ever have before):

I went home for Easter during the latter half of spring break and, being a low-key person by nature, was fortunate enough to get to spend much of that time chatting with my parents and some good friends. I'd gone home feeling excited about some of the progress I've made recently in auditory therapy, and warned my mother in advance that I'd "make her be mean to me" while at home by talking to me while not letting me look at her. A few times over the weekend, we did it. Sitting side by side in the quiet living room at home, I'd stare at the ceiling or across the room while we entered into a conversation. Each time she fell silent for a few moments then began speaking again, I instinctively turned my glance in the direction of her voice, as always wanting to see, to lipread. Then, as always, I forced myself away from her face and clung to the wavering thread of that voice.

It was more robust than ever, at least because I felt more able to grasp it than ever. During one conversation in particular, I found myself thinking of the days, during the summer of 2010, when we'd sit down and do endless renditions of "I like watermelon" or "I like apples," semi-closed-set exercises that despite their predictability sent me into spirals of frustration. Words sounded unfamiliar, elusive, and my brain ground its wheels and sent sparks flying just to understand the simplest things. One syllable, two syllables, foreign shapeless noises blaring at me, raising tides of pent-up energy as I reached for them but knew not how to hold them in my hand. This time, in the quiet with that oh-so-familiar voice, we actually achieved some semblance of conversational flow.

My mother would make an observational remark, and I'd get it quickly enough to say, "Oh really? How did that go?"

I asked her to repeat words here and there, but always within the context of what I'd heard: "The dog is doing what?" or "She said she'd see you when?" Listening wasn't perfect, but nor was it completely incoherent: in the dense jungle of sound, my mind always had a few strong vines to grasp, and my brain was always able to trace a terrain map of what it had heard.

Toward the end of the conversation, I realized that this kind of fill-in-the-gap is something I do all the time while lipreading. Even in this quiet conversation with a familiar voice, I was able to approach the comprehension threshold that I already achieve with sight. That sound, that listening would ever carry me there! Stunning.

In the past, we've stuck mainly with familiar subject matter even in our open-set conversations, and even that has felt stilted and difficult. This time, we were able to expound upon subjects that I knew very little about. She told me about people she'd recently met, stories they'd told her - completely open-set, unknown material to my ears. Finally, here I understood: acquiring new information through hearing, through language. Is this how it feels?

There was no more - or very little - stumbling back-and-forth through short, disconnected statements uttered only for the purpose of exercise. No more listen and repeat. "Today is Saturday." "Tomorrow is Easter." "I am tired." "You are on vacation today." None of that. I listened to fuller, more complex and coherent sentences and - I can't describe how wonderful this felt - kept up with 80-90% of what my mother was saying. It was like being liberated from elementary beginning-to-read books into the world of prose and literature. That's the only way I can think of to describe it.

Finally, the most exulting, the most elusive feeling of all: the feeling of being able to move beyond meaning to engaging with actual content. The words came more easily to me when I heard them, and I lingered less on their meaning, spent less time slamming my head against the shadowy surface of each word before its sound waves vanished forever. I heard; I understood; I formulated a response. My brain felt increasingly able to process meaning in real time. Returning to the jungle analogy, it was like swinging through the forest canopy on vines, reaching the end of each arc and actually finding another handhold there instead of swinging backward to where I started - or, worse yet, missing and falling to the underbrush below.

Conversational flow: understanding what someone else is saying, easily and effortlessly enough to respond and feel comfortable with the give and take of words. It may not have been perfect this past weekend, but it was far better than I have ever experienced. That sensation of electric auditory back-and-forth felt like a gift. A gift of that mysterious black box inside my skull, calculating sound frequencies and piecing them together and presenting them back to me in a wrapped package. I still don't entirely understand how it happens, still can't entirely believe that it could happen to someone like me.

Three years ago, I would have found this kind of experience incomprehensible. Here's to my nearly three-year-old baby ear (and more posts, like a proud parent, to chronicle its progress)!