I’m never quite sure how to drop it, or when. But I need to figure it out.
By “it,” I mean the question of telling people I meet that I'm deaf. I’m not exactly like them, I can’t do certain things, and specific accommodations need to be made for me, but I also want to be clear about the abilities that I do have and to avoid making the hearing-loss issue intimidating. It’s a quandary that, post-CI, I still struggle with. How to be clear, straightforward, approachable, fair, but yet realistic?
It’s a tricky challenge with no one-size-fits-all solution. Sometimes, at the outset of a conversation or a relationship, dropping the “d-bomb” simply isn’t necessary – or relevant. When applying for a job or internship position, no way am I going to mention it. Why should I, when it doesn’t at all affect my qualifications or my ability to perform? Starting every introduction email with the disclaimer, “By the way, before you decide how to interact with me in the future, you should know that I am deaf” – that’s not an option. It’s selling myself short. I refuse to let one aspect of my identity define my every interaction. In pursuing my real-world activities, I am a student, a reader and a writer, a hard worker, a participator, et cetera, first. I begin long-distance interactions simply as myself – which of course brings up the interesting question of how my deafness fits into this holistic sense of self-identity. (Messy question; not going there.)
However, when the time for an interview rolls around, or when I find myself about to (gulp) actually meet the individual with whom I’ve been corresponding, I need to decide what to do. In the past, I’ve tried both approaches. I’ve stayed mum about the d-word and showed up hoping that the situation won’t escalate into something unmanageable, and/or that my lipreading skills will be able to save me.
(Sometimes, that’s worked beautifully. Other times, I find myself reeling and backtracking, trying to explain away the minor snags that have suddenly turned into ogres. It depends on the person and the situation, it really does. If I bring up the deafness issue with some people, I look back afterwards and wonder why I made it such a big deal. Why, it really was irrelevant. Other people, however, need to be slammed over the head with it before I feel like I can approach a semblance of my normal ability to function.)
Or, I’ll play my cards straight before I even meet this person face-to-face. Deep breath. Time to let the cat out of the bag. I’m embarrassed every time it happens, for whatever reason. I suppose because I’ve succeeded so far in my life goal of Interacting Normally With Hearing People, and now I’m about to voluntarily set myself apart.
(Interestingly, this approach of prior disclosure is also successful, or not, depending on the person and the situation. Some people, if they’ve been given time to ruminate over “Ohmygoshshe’sdeafIdon’tknowwhattodo,” come to pieces in the actual interaction. They’re more nervous than I am, they overenunciate, they question themselves, and so the entire meeting becomes damage control on my part, trying to reassure said person back to the impression-of-hearing-person-normalcy that they had before. Other people, however, simply appreciate the heads-up. I’ve had several surprising situations arise where I’ll meet someone who unexpectedly knows some sign language or who already has deaf friends or family members – if I hadn’t mentioned my own deafness, I wouldn’t have received the gift, so to speak, of being able to interact on this level.)
The d-bomb is troublesome even in casual interactions. Sometimes I’ll be out and about and meet someone new. He or she is easy to lipread, and so we settle into a comfortable conversation without me ever bringing up my hearing loss at all. I’m enjoying myself when this new hearing companion does something that does not adhere with my version of reality, such as saying “Give me a phone call!” At that moment, of course, I have to break the mold, bring my deafness out of the closet, and say, “Whoa, hold on.” And then, of course, the situation feels awkward because I hadn’t mentioned this gee-probably-rather-important-fact before. Why? It wasn’t necessary. I was comfortable then. Honestly, I forgot.
Or, I’ll indicate to a new friend what I need in a one-on-one interaction, only to see that friend again in a group and realize that he or she really doesn’t get the big picture, doesn’t get that what works in one situation falls apart in another. Then, I’m obliged to speak up and clarify further, but too often it becomes easy to embrace a self-defeatist mindset and let things unfold as they will.
This is a problem: I tend to only mention my deafness when it becomes troublesome. Otherwise, I shove it under the carpet and ignore it. Ignoring it is something I’ve tried to do for a while, and it doesn’t work. Not only is it unfair to me, it’s unfair to the people whom I could construct valuable relationships with, if they only knew what to do. Approaching the hearing world head-on was part of my decision to get a CI, and since then I’ve gotten progressively better at being up-front. (But, but – there are situations where being up-front isn’t necessary! Where I can cope! Where lipreading is fine! Where the CI is amazing! Where I don’t feel the need to let every single person I meet know just how complicated all of this is! Like I said, all of these questions can get tricky.)
There are other questions I’m mulling over, too. For instance, what language should I use? Oftentimes “Hello, my name is Rachel and I’m deaf” doesn’t seem to work. Hearing people don’t know what to do with that word, that entire concept. They’ve often never thought about what it means. I’m as likely to get stares of shock as I am offers of accommodation. One of my deaf friends once advised me to introduce it through subtler means and action-significant words, such as “I lipread” or “I need you to look at me when you talk.” There, is that better? I’ve revealed something important about myself but also given my companion some indication of how he or she should behave. That's more productive and fair, isn't it?
Interestingly, talking about my CI fits into the entire d-bomb dilemma. “So that thing lets you hear?” people will ask me. I hesitate before giving them an answer. I want to explain that hearing isn’t the same as understanding, that it’s a beast of a process, that what I’m capable of now isn’t what I’ll be capable of in six months, or (certainly not!) what I was capable of when I first got switched on. But, for the uninitiated, hearing is a binary: either you can, or you can’t. I don’t want to contribute to misconceptions that, with my CI, I’m able to function one hundred percent normally, but I also don’t want to underemphasize the immense difference it has made in my life. So I sidestep the question a bit. I try to respond to the confused inquiries of “If you have a cochlear implant, then, doesn’t that mean you’re not deaf after all?” I try to address how lipreading and structuring my environment are still very important tools, even though, yes, I technically “can” hear at an almost-normal plane. The concept of balance between two worlds, deaf and hearing, is difficult for many people. And, in a way, the CI has only made it more complicated to explain.
In the end, it’s easy to want to give up. I find that sometimes there’s no way to be consistent about how I present myself and my deafness. But there must be a way to be consistently included, consistently understood, consistently enabled. There must be – just hold on, though, I’m working on it.
Thursday, March 24, 2011
Sunday, March 13, 2011
Written While Procrastinating
It's amazing how, even on a gloomy overcast day that's robbed me of an hour's sleep, I'm able to sit listening to this solo piano station on Pandora and automatically feel energized.
It's amazing how, on the good songs, the notes shoot up and something in me rises too, like muscles heaving as I inhale sweet clear air and turn back to my textbooks with greater gusto.
It's amazing how much of this I don't understand, yet how I still gravitate to something just because it "sounds good."
It's even amazing how my sister laughs at me and says, "You used to hate music!"
So "hate" probably isn't the most accurate word to use here. But point conceded. Very, very gladly conceded.
It's amazing how, on the good songs, the notes shoot up and something in me rises too, like muscles heaving as I inhale sweet clear air and turn back to my textbooks with greater gusto.
It's amazing how much of this I don't understand, yet how I still gravitate to something just because it "sounds good."
It's even amazing how my sister laughs at me and says, "You used to hate music!"
So "hate" probably isn't the most accurate word to use here. But point conceded. Very, very gladly conceded.
Monday, March 7, 2011
Backtrack
It’s funny that I wrote about destabilizing moments in my last post, because I had one – albeit of a very different sort – this past weekend. Like a total dunce, I forgot to recharge my ensemble of CI batteries on Friday night, and so woke up on Saturday to find that I had a quarter of the juice in each battery, but that was all. Thinking that I’d remember to swap out in the middle of the day before my BTE died completely, I set out.
Of course, lunch came and went without this resolution even crossing my mind, and in the early afternoon the thrum of noise shut off. I had just gotten on a horse five minutes earlier, and the sudden silence was startling. No more birds, no more gravel crunching underfoot, no more wind. Just a deadening hush. My first reaction, I now laugh to say, was of panic. How could I deal with this silence? For a whole ride? And then for the time period afterward until I could get back to my room to switch batteries, a good forty-five minutes in which I would have to walk around and function and – banish the thought – talk to people? I wanted my sound back!
I’ll be honest, I thought about dismounting right there and running for the woods. It was something of an irrational impulse, but then another voice spoke up in my mind. You did this for twenty years, it said. You rode for twenty years, you lived for twenty years, just like this. It was fine then, and it’ll be fine now. Oh, yeah. Who was I, of all people, to doubt my ability to function without sound? Had I changed that much?
Still, as I entered the arena and proceeded with my ride, I felt less confident than usual. I spent more time looking into the faces of the riders I passed, glancing over my shoulder to be sure I hadn’t missed anything. I worried that someone would yell after me, or that something unexpected would happen nearby, and I would not hear. I even felt disconnected from what I was doing because of how I floated along in silence, muffled noise from my hearing aid notwithstanding. In short, my sound-acclimatized brain was embracing some of the fears that lay hearing people have about deafness.
When I dismounted, I passed some people in the barn and found that I suddenly did not want to talk to them. It struck me how hard it was to understand based only on lipreading and this indistinct-hearing-aid muddle. I finished up quickly, and went to meet a friend before walking back to my room together. Talking with him, my head reeled. I had to squint my eyes and focus; no sound cues were there to help me out. When I spoke, my tongue seemed to slide around in my mouth. I suddenly did not have any auditory feedback to track how I was articulating my words, and the edges of my pronunciation seemed to soften and turn to mush. I do not know how to describe this sensation: I literally could not find my verbal footing. Without my CI, my confidence, my situational awareness, my conversational skills, even the way I talked all seemed to crumble. In my mind, I could imagine what the world ought to have sounded like, but without direct auditory stimulation those imaginings became irrelevant. During those two or so hours before I replaced the battery and everything was fine again, I felt swept out to sea.
I won’t expand on this experience any farther. It’s something I’ll have to reflect on. All I have to say is: wow. My brain certainly has rewired itself, and I am stronger for it. In ways I almost have not realized.
Of course, lunch came and went without this resolution even crossing my mind, and in the early afternoon the thrum of noise shut off. I had just gotten on a horse five minutes earlier, and the sudden silence was startling. No more birds, no more gravel crunching underfoot, no more wind. Just a deadening hush. My first reaction, I now laugh to say, was of panic. How could I deal with this silence? For a whole ride? And then for the time period afterward until I could get back to my room to switch batteries, a good forty-five minutes in which I would have to walk around and function and – banish the thought – talk to people? I wanted my sound back!
I’ll be honest, I thought about dismounting right there and running for the woods. It was something of an irrational impulse, but then another voice spoke up in my mind. You did this for twenty years, it said. You rode for twenty years, you lived for twenty years, just like this. It was fine then, and it’ll be fine now. Oh, yeah. Who was I, of all people, to doubt my ability to function without sound? Had I changed that much?
Still, as I entered the arena and proceeded with my ride, I felt less confident than usual. I spent more time looking into the faces of the riders I passed, glancing over my shoulder to be sure I hadn’t missed anything. I worried that someone would yell after me, or that something unexpected would happen nearby, and I would not hear. I even felt disconnected from what I was doing because of how I floated along in silence, muffled noise from my hearing aid notwithstanding. In short, my sound-acclimatized brain was embracing some of the fears that lay hearing people have about deafness.
When I dismounted, I passed some people in the barn and found that I suddenly did not want to talk to them. It struck me how hard it was to understand based only on lipreading and this indistinct-hearing-aid muddle. I finished up quickly, and went to meet a friend before walking back to my room together. Talking with him, my head reeled. I had to squint my eyes and focus; no sound cues were there to help me out. When I spoke, my tongue seemed to slide around in my mouth. I suddenly did not have any auditory feedback to track how I was articulating my words, and the edges of my pronunciation seemed to soften and turn to mush. I do not know how to describe this sensation: I literally could not find my verbal footing. Without my CI, my confidence, my situational awareness, my conversational skills, even the way I talked all seemed to crumble. In my mind, I could imagine what the world ought to have sounded like, but without direct auditory stimulation those imaginings became irrelevant. During those two or so hours before I replaced the battery and everything was fine again, I felt swept out to sea.
I won’t expand on this experience any farther. It’s something I’ll have to reflect on. All I have to say is: wow. My brain certainly has rewired itself, and I am stronger for it. In ways I almost have not realized.
Friday, March 4, 2011
When the Ground Sways Beneath Your Feet
I stumbled across this video from Advanced Bionics today and thought I'd post it. It fits into the lines of what I've written on this blog before, but there's still no getting over how incredibly sophisticated this whole CI concept is. And the best part: it sounds great!
I've been having a lot of moments lately (okay, maybe all along) of surprising complexity, destabilizing moments where it seems like my brain, under the surface, is working on a new breakthrough. Or when it seems like the meaning of something is just within reach, although I can only brush it with my fingertips. It'll happen quite suddenly: I'll be walking and talking with a friend when I notice that the sound of her voice is different than before, that it's making me gasp with its smoothness and resonance, even if I can't say exactly how or why it's changed. I'll get distracted by its rich ebb and flow, like little green tendrils are starting to blossom beneath the previously barren surface of syllabic patterns. Those are delicate roots that don't funnel down very far right now, but I can almost physically feel them growing. So, in my mind I'll gasp and then realize that I'm not paying attention to what my friend is actually saying. Why would I, when her voice by itself sounds so wonderful and strange? Earth to Rachel. Hello there, lipreading.
Speaking of which, I still do lipread extensively - but, when it's quiet, I've been having more and more moments where I'll turn half away or not quite see the shape of a word on someone's lips. Instead of panicking, I'll feel my brain gently slide in and hand the phrase to me. Oh. Thanks. That wasn't a big deal. A lot of times it's only afterwards that I realize I wasn't seeing, but hearing. My auditory therapist commented on this the other day - I'm not asking for as much repetition with her as I did during the summer, I'm more confident and self-possessed and more active in the conversation. This is something I might not have noticed on my own, but the feedback is a great confidence boost. Upon further reflection, it's true. When I'm not fried from processing all this new information, I have more room inside my own head to think.
In those quiet situations, there is a constant give-and-take between sound and sight, the two of them uncertain allies (and sound, the newcomer, often shuffling into the corner feeling unwelcome) but gradually learning to work together. But in noise it's a different story. Then, sound will rush headlong into the path of chaos while sight pulls back, disgruntled, and attempts to restore proper balance to my brain. With more small noises entering my stream of consciousness from farther away, this tug o'war is something that will continue for a while. I've found that I have a very hard time taking exams now because of the shuffling, rustling, coughing, creaking noises going on through the hush, whereas before the CI I was always perfectly content in my mental bubble of silence. I stormed out of my room the other night wondering what the heck the ruckus in my house was, only to find three people having a table conversation (okay, a lively conversation, but still, only a conversation) three rooms and two closed doors away. Really? It was hard to be upset when I realized I'd actually heard that. And heard it so loudly. Sight keeps wanting to seize sound's head and bang it on the table (okay, the rest of my body does too - it's a collective mutiny) but sound keeps holding its own, becoming bolder than ever. And, of course, more useful.
All of this, to be honest, has set me on the path of considering a second CI. There are frequent moments now where I have to check to be sure my hearing aid is still working, that side of my head feels like such a dead zone. But that's something I'll write about another time.
I've been having a lot of moments lately (okay, maybe all along) of surprising complexity, destabilizing moments where it seems like my brain, under the surface, is working on a new breakthrough. Or when it seems like the meaning of something is just within reach, although I can only brush it with my fingertips. It'll happen quite suddenly: I'll be walking and talking with a friend when I notice that the sound of her voice is different than before, that it's making me gasp with its smoothness and resonance, even if I can't say exactly how or why it's changed. I'll get distracted by its rich ebb and flow, like little green tendrils are starting to blossom beneath the previously barren surface of syllabic patterns. Those are delicate roots that don't funnel down very far right now, but I can almost physically feel them growing. So, in my mind I'll gasp and then realize that I'm not paying attention to what my friend is actually saying. Why would I, when her voice by itself sounds so wonderful and strange? Earth to Rachel. Hello there, lipreading.
Speaking of which, I still do lipread extensively - but, when it's quiet, I've been having more and more moments where I'll turn half away or not quite see the shape of a word on someone's lips. Instead of panicking, I'll feel my brain gently slide in and hand the phrase to me. Oh. Thanks. That wasn't a big deal. A lot of times it's only afterwards that I realize I wasn't seeing, but hearing. My auditory therapist commented on this the other day - I'm not asking for as much repetition with her as I did during the summer, I'm more confident and self-possessed and more active in the conversation. This is something I might not have noticed on my own, but the feedback is a great confidence boost. Upon further reflection, it's true. When I'm not fried from processing all this new information, I have more room inside my own head to think.
In those quiet situations, there is a constant give-and-take between sound and sight, the two of them uncertain allies (and sound, the newcomer, often shuffling into the corner feeling unwelcome) but gradually learning to work together. But in noise it's a different story. Then, sound will rush headlong into the path of chaos while sight pulls back, disgruntled, and attempts to restore proper balance to my brain. With more small noises entering my stream of consciousness from farther away, this tug o'war is something that will continue for a while. I've found that I have a very hard time taking exams now because of the shuffling, rustling, coughing, creaking noises going on through the hush, whereas before the CI I was always perfectly content in my mental bubble of silence. I stormed out of my room the other night wondering what the heck the ruckus in my house was, only to find three people having a table conversation (okay, a lively conversation, but still, only a conversation) three rooms and two closed doors away. Really? It was hard to be upset when I realized I'd actually heard that. And heard it so loudly. Sight keeps wanting to seize sound's head and bang it on the table (okay, the rest of my body does too - it's a collective mutiny) but sound keeps holding its own, becoming bolder than ever. And, of course, more useful.
All of this, to be honest, has set me on the path of considering a second CI. There are frequent moments now where I have to check to be sure my hearing aid is still working, that side of my head feels like such a dead zone. But that's something I'll write about another time.
Sunday, February 6, 2011
Riders, Lend Me Your Ears
This is going to be a quick post, because I really should be studying right now...
But huge CI moment for me this weekend, as I competed for Stanford's equestrian team in a home horse show. For the first time ever, the PA system was making sense to me during the equitation on the flat classes, when I stood by the back gate within clear listening range. (I did have a similar experience a few weekends ago at an away show, but the volume and sound quality in that arena were so cruddy that I really didn't get much more than an isolated word or two, and even then I might have been making that up.) Getting ready for my class yesterday and earlier today, I watched the other riders in the arena and listened to the announcer give the verbal commands for which gait they should display next, and found my stomach doing little lighthearted flips. Because, almost every single time, I got it!
"Riders, to the rising trot."
"Sitting trot, please."
"Riders, canter please."
"Riders, please walk and line up in the center of the ring."
"Riders, drop your stirrups."
You get the point. I even got the numbers being announced sometimes, when there wasn't too much background noise or cheering from the crowd. Now, I've competed in horse shows for much of my life, and this has me feeling so giddy. I used to be terrified - absolutely terrified - of flat classes because of my fear of (and actual experience with) missing the announcer's commands and performing much worse than my best. I used to get unbearably tense before every such class, and would often ride abominably because of my preoccupation with what the other riders were doing - was I doing it right? What was next? When would the next transition come? Would it catch me off-guard?
Today - entirely different story. Although my auditory processing wasn't as stellar when I was on the horse rather than standing and watching, I did pick up a few things during my own class. All this made me feel like running and jumping up and down and telling my friends and teammates, "I hear it, I understand it! Canter! Canter!" (A note: I restrained myself. Flat class announcing is far too mundane for such enthusiasm.)
Granted, all of these commands tend to be rather redundant. But in terms of a closed set that's actually applicable to an area of my life, whoo-hoo!
But huge CI moment for me this weekend, as I competed for Stanford's equestrian team in a home horse show. For the first time ever, the PA system was making sense to me during the equitation on the flat classes, when I stood by the back gate within clear listening range. (I did have a similar experience a few weekends ago at an away show, but the volume and sound quality in that arena were so cruddy that I really didn't get much more than an isolated word or two, and even then I might have been making that up.) Getting ready for my class yesterday and earlier today, I watched the other riders in the arena and listened to the announcer give the verbal commands for which gait they should display next, and found my stomach doing little lighthearted flips. Because, almost every single time, I got it!
"Riders, to the rising trot."
"Sitting trot, please."
"Riders, canter please."
"Riders, please walk and line up in the center of the ring."
"Riders, drop your stirrups."
You get the point. I even got the numbers being announced sometimes, when there wasn't too much background noise or cheering from the crowd. Now, I've competed in horse shows for much of my life, and this has me feeling so giddy. I used to be terrified - absolutely terrified - of flat classes because of my fear of (and actual experience with) missing the announcer's commands and performing much worse than my best. I used to get unbearably tense before every such class, and would often ride abominably because of my preoccupation with what the other riders were doing - was I doing it right? What was next? When would the next transition come? Would it catch me off-guard?
Today - entirely different story. Although my auditory processing wasn't as stellar when I was on the horse rather than standing and watching, I did pick up a few things during my own class. All this made me feel like running and jumping up and down and telling my friends and teammates, "I hear it, I understand it! Canter! Canter!" (A note: I restrained myself. Flat class announcing is far too mundane for such enthusiasm.)
Granted, all of these commands tend to be rather redundant. But in terms of a closed set that's actually applicable to an area of my life, whoo-hoo!
Tuesday, February 1, 2011
Auditory Memory and Other Ramblings
Auditory therapy, session two. Take-away points: right now it's all about building confidence and auditory memory. (Nothing new. That mental sound dictionary is going to be years in the making.) And it's about making myself stretch, too, defining a set that's neither too open nor too closed. I have to flex my listening muscles, so to speak, and make myself work hard without becoming frustrated or feeling like the answer is out of reach. It's a tricky balance. So how do I push those boundaries? This week we tried several things. Listening and selecting sentences at different volumes and distances, defining a category and then having me discern open-ended statements about it, listening to sets of words and determining which one did not belong. That brain of mine is still reluctant to listen, to put its faith in something previously so unknown, but the more I push it the more it cooperates.
Also, I need to put aside my fear of incomprehension. It's a bit ironic that lack of communication is probably my biggest fear, yet it's something with which I have a tremendous amount of experience. Over the years I've come up with a number of coping mechanisms for situations when I'm just not getting it. My brain has gotten good at glossing things over, at filling in the blanks when it can and trying to cope when it can't. Up to this point, that puzzle-solving process has mainly applied to lipreading, but now it applies to listening too. While deciphering the speech sounds I hear, I need to make myself release some of my inner tension. I'm going into overdrive, piecing together sounds in an attempt to extract a statement that makes sense, and worrying when none of it fits - but, when things do click, it often happens suddenly. No analysis involved: I know what I'm hearing! That's the goal, moving forward - to ask myself, am I listening with my ears or with my brain? That analytical mind of mine has always been a huge asset, but maybe one day it'll be a bit less necessary, or a bit less overburdened, as more of the pieces fall into place. What a great thought.
And, finally - this may be a bit redundant, but I keep feeling stunned at the texture of the world with sound in it. Seven months has not distilled my private sense of wonder. There's a bird building a nest outside my window, and I hear it right now as I type. I've been noticing new types of bird calls around campus, too, and other sounds keep shadowing me, feeling more and more like good friends. The whistling of the wind, the squeal of my bike tires, overlapping machinery, people's voices carrying over from the most improbable places. Hard work aside, all of this is so, so amazing.
Also, I need to put aside my fear of incomprehension. It's a bit ironic that lack of communication is probably my biggest fear, yet it's something with which I have a tremendous amount of experience. Over the years I've come up with a number of coping mechanisms for situations when I'm just not getting it. My brain has gotten good at glossing things over, at filling in the blanks when it can and trying to cope when it can't. Up to this point, that puzzle-solving process has mainly applied to lipreading, but now it applies to listening too. While deciphering the speech sounds I hear, I need to make myself release some of my inner tension. I'm going into overdrive, piecing together sounds in an attempt to extract a statement that makes sense, and worrying when none of it fits - but, when things do click, it often happens suddenly. No analysis involved: I know what I'm hearing! That's the goal, moving forward - to ask myself, am I listening with my ears or with my brain? That analytical mind of mine has always been a huge asset, but maybe one day it'll be a bit less necessary, or a bit less overburdened, as more of the pieces fall into place. What a great thought.
And, finally - this may be a bit redundant, but I keep feeling stunned at the texture of the world with sound in it. Seven months has not distilled my private sense of wonder. There's a bird building a nest outside my window, and I hear it right now as I type. I've been noticing new types of bird calls around campus, too, and other sounds keep shadowing me, feeling more and more like good friends. The whistling of the wind, the squeal of my bike tires, overlapping machinery, people's voices carrying over from the most improbable places. Hard work aside, all of this is so, so amazing.
Friday, January 28, 2011
You Know It's Loud When...
The place where I live in college is big on parties. Almost every night the sounds of music, commotion, and people talking rushes through my wall into my room. I cannot escape (or, rather, refuse to escape), but it's a good exercise in filtering out irrelevant noise.
But last night - someone's twenty-second birthday. The house is packed and rather drunken. I've had a long week and am off to bed. I walk down the hall, past hordes of people squished together, sloshing their ubiquitous red solo cups. I am about to wash my face in the bathroom and have taken off both my hearing aid and CI. I float in silence. In that state of total deafness, I sink into my usual detachment and amused objectivity. That voice in my mind speaks up wryly; I wonder if any of these people realize how strange they appear from the outside, with the sound turned off, mouths gaping and faces contorted into improbable expressions. I want to laugh, even as I find it slightly grotesque. The uniqueness of my version of reality accompanies me as I weave through the crowd, not caring for any of it now that I cannot hear.
But I can hear, that's what disturbs me most: the music is so loud. It's thundering through my body, the beat sharply defined and harsh. And, in my right ear, in my non-CI ear that still has some residual hearing left, I can hear faint, far-away thrums. They slam into my head like popping, shocking my brain with their brute physical force. (Not so in the left ear, which remains eerily silent, so different from when magnet fastens onto skull - wow, I have become completely dependent on that apparatus.) A group beside me shouts, the song changes. And I hear it. If it's that penetrating and noisy, that even my deafness cannot shut it out, how can it be possible that the people around me are not going deaf themselves?
Except I know they must be. This is too much noise for it to be otherwise. I am reminded of a conversation I had with my auditory therapist earlier this week: just wait a few years. Soon more and more of them will be struggling to hear, to keep up, to understand, and I'll find myself better equipped to cope with hearing loss than any of them. Now, that's ironic.
And, yes, the silence as an escape is nice, but embracing it for the sake of 120 decibels of a pop song? Not worth it. I keep feeling troubled by what hearing people do to themselves. Breathe. Turn the volume down, for your own sake.
But last night - someone's twenty-second birthday. The house is packed and rather drunken. I've had a long week and am off to bed. I walk down the hall, past hordes of people squished together, sloshing their ubiquitous red solo cups. I am about to wash my face in the bathroom and have taken off both my hearing aid and CI. I float in silence. In that state of total deafness, I sink into my usual detachment and amused objectivity. That voice in my mind speaks up wryly; I wonder if any of these people realize how strange they appear from the outside, with the sound turned off, mouths gaping and faces contorted into improbable expressions. I want to laugh, even as I find it slightly grotesque. The uniqueness of my version of reality accompanies me as I weave through the crowd, not caring for any of it now that I cannot hear.
But I can hear, that's what disturbs me most: the music is so loud. It's thundering through my body, the beat sharply defined and harsh. And, in my right ear, in my non-CI ear that still has some residual hearing left, I can hear faint, far-away thrums. They slam into my head like popping, shocking my brain with their brute physical force. (Not so in the left ear, which remains eerily silent, so different from when magnet fastens onto skull - wow, I have become completely dependent on that apparatus.) A group beside me shouts, the song changes. And I hear it. If it's that penetrating and noisy, that even my deafness cannot shut it out, how can it be possible that the people around me are not going deaf themselves?
Except I know they must be. This is too much noise for it to be otherwise. I am reminded of a conversation I had with my auditory therapist earlier this week: just wait a few years. Soon more and more of them will be struggling to hear, to keep up, to understand, and I'll find myself better equipped to cope with hearing loss than any of them. Now, that's ironic.
And, yes, the silence as an escape is nice, but embracing it for the sake of 120 decibels of a pop song? Not worth it. I keep feeling troubled by what hearing people do to themselves. Breathe. Turn the volume down, for your own sake.
Monday, January 24, 2011
Milestones!
Today I popped on my CI and drove out for my first session with an auditory therapist since September. I'd been into her office once or twice over the summer when I flew out for remappings, but due to being gone for so long I hadn't been on any kind of directed program. Go out into the world and figure out the sounds in it! That was my task.
And, in many ways, it will continue to be my task for a while yet. CI rehab, if nothing else, is very individually motivated. I was pleased to find today that I've achieved a slew of milestones since July and September - things that were hard or impossible for me then are easy now. (Or, if not easy, then possible. That's still encouraging!) I could identify all of the major speech sounds, something which brought back memories of sitting in my house in July getting frustrated over "ah" and "oo" and wondering if this contraption would ever make sense. Ah, YES. Sentence and word identification, provided that I had a closed set, also turned out to be a relative breeze, even without a leading phrase for minimal-pair words. Open sets are still a struggle, not unexpectedly so, but I'm picking out bits and sounds throughout the sentences I'm given. (This is something I've noticed in everyday use, while sitting where I cannot lipread a person - I can catch the common words like "and," "but," "or," "I mean," "you know." Of course, this doesn't help very much with the sentence at large. But it's something!)
We also discussed brain and listening development up to this point and in the future, talked about the interaction between hearing aid and CI (which continues to evolve), thought about issues in quiet versus noise (still one of my biggest challenges), plus came up with some strategies for dealing with everyday situations and continuing my everyday listening practice. Every day that I wear the CI is practice! I need to remember that; all along I've been hard on myself for not doing enough structured listening. But my brain does pick up on meanings and nuances on its own, I still don't know how. One example: I was told today, and have been told by countless people at other times, that my speech has really noticeably improved since the CI. It's not that I spoke poorly before, just that my enunciation has smoothened out, become more regular, and my clarity and volume is the best it's been. Now, this is nice to hear, but it's not something that's happened consciously. I don't think more about my speech now than I did seven months ago. It's just my brain automatically and subconsciously correcting old habits to correspond with how I hear other people talk. How wild is that?
Finally, one of my big takeaway points is that, moving forward, building self-confidence will be key. Once I believe that I can do something, once I relax and smile and take it in stride, then listening comes easier and easier. This entire process of disproving my two-decade-old convictions is quite strange... But how wonderful to have a day where everything falls into perspective!
And, in many ways, it will continue to be my task for a while yet. CI rehab, if nothing else, is very individually motivated. I was pleased to find today that I've achieved a slew of milestones since July and September - things that were hard or impossible for me then are easy now. (Or, if not easy, then possible. That's still encouraging!) I could identify all of the major speech sounds, something which brought back memories of sitting in my house in July getting frustrated over "ah" and "oo" and wondering if this contraption would ever make sense. Ah, YES. Sentence and word identification, provided that I had a closed set, also turned out to be a relative breeze, even without a leading phrase for minimal-pair words. Open sets are still a struggle, not unexpectedly so, but I'm picking out bits and sounds throughout the sentences I'm given. (This is something I've noticed in everyday use, while sitting where I cannot lipread a person - I can catch the common words like "and," "but," "or," "I mean," "you know." Of course, this doesn't help very much with the sentence at large. But it's something!)
We also discussed brain and listening development up to this point and in the future, talked about the interaction between hearing aid and CI (which continues to evolve), thought about issues in quiet versus noise (still one of my biggest challenges), plus came up with some strategies for dealing with everyday situations and continuing my everyday listening practice. Every day that I wear the CI is practice! I need to remember that; all along I've been hard on myself for not doing enough structured listening. But my brain does pick up on meanings and nuances on its own, I still don't know how. One example: I was told today, and have been told by countless people at other times, that my speech has really noticeably improved since the CI. It's not that I spoke poorly before, just that my enunciation has smoothened out, become more regular, and my clarity and volume is the best it's been. Now, this is nice to hear, but it's not something that's happened consciously. I don't think more about my speech now than I did seven months ago. It's just my brain automatically and subconsciously correcting old habits to correspond with how I hear other people talk. How wild is that?
Finally, one of my big takeaway points is that, moving forward, building self-confidence will be key. Once I believe that I can do something, once I relax and smile and take it in stride, then listening comes easier and easier. This entire process of disproving my two-decade-old convictions is quite strange... But how wonderful to have a day where everything falls into perspective!
Monday, January 17, 2011
Success, Undermined
One thing that frequently bothers me is the uniqueness of my position, not only with receiving a CI at my age in my circumstances, but in doing the things that I do, as a deaf person.
I applied for a job earlier this month, and got a prompt email response praising my resume as well-qualified, with the inevitable line, "Please give me a call at xxx number so we can discuss this further." Oh, jeez. This again. Obviously I hadn't mentioned the whole deaf thing from the start; it was completely irrelevant. But obviously it had to come out now. So, taking a deep breath and feeling vaguely abashed (as I always do in such situations), I fired off a reply explaining that phone calls weren't an option for me, could we meet in person or email, et cetera. The answer I got: "How wonderful that you have gone this far in spite of being deaf." Uhhh. Yeah. Gah. And then a few evasive lines about being uncertain of whether I could manage the job because of my phone incompatability and challenges in receiving verbal feedback. Well, so much for that.
This is just one recent instance (and a pretty mild example, at that) of several things that I keep running up against. The necessity of labeling myself as deaf - which I am, yes, on one hand - even while I feel like I've morphed into some strange organism with head jumbled full of noise. Deaf, but not entirely. And not hearing either. The question of what I will be able to accomplish or do at any time in the future, and the uncertainty that accompanies such a state of flux. The assumptions that hearing people make, that everyone has the same mainstream abilities. The way I myself make these assumptions, that other people can see or run or jump or be athletic or learn quickly or eat an unhindered diet. (This bothers me. I hate assumptions, and hate that I should make them. But, in the end, aren't they necessary for collective groups to function?) Finally, the resentment that a deaf individual with my level of proficiency (in academic accomplishment, in verbal skills, in whatever) should be considered "exceptional." The perception that deafness is some sort of terrible barrier against high achievement.
Don't get me wrong, deafness can be a terrible barrier. No one knows that better than I do. But what most frequently makes it terrible, in essence, isn't the competence of the deaf individual in question - it's simply that the way the mainstream world works is incompatible with what that individual needs to thrive. Language. Accessibility. Early intervention. Visual media. Understanding. A social and therapeutic safety net. That this ideal environment doesn't exist isn't anyone's fault, not entirely. It's a problem that I don't quite know the answer to, but it bothers me constantly. Deaf people (contrary to the old moniker) aren't dumb. But I look around and don't see any of them at Stanford. I doubt there are very many at Harvard, Princeton, or Yale, either. I see very few of them in high-functioning, mainstream professions. I literally never see cochlear implants when I'm out and about. I think I'd just about do backflips if I ever glimpsed one. Growing up, I never had a deaf role model - my world was full of hearing people, and I wasn't sure what to do with myself. Many of the deaf peers that I had while growing up currently struggle in school, or hate it, or gape that I can achieve grades and acknowledgements and milestones on par with my hearing peers. In such a world, it's easy for me to forget that other accomplished deaf individuals exist.
This could be cause for me to celebrate and feel smug, but it isn't. I am reminded of how much I want a world where it's simply ordinary for deaf individuals to succeed to a high standard. It's not just that I don't want to be singled out. It's that there is no real cognitive, biological reason why more people with hearing losses shouldn't have the opportunities and experiences that I have had. (Social, political, psychological, and individual trends come into effect instead - now those are the snarky ones.) Why me? Why should I have this, if others don't?
This isn't a post intended to lay out areas in which the framework of deaf life in America could improve - clearly there are many - but, rather, a bit of a meditative outburst. These outbursts happen to me every once in a while, and I think the current one is worthy food for thought. This year I'd like to grapple with such questions a bit more head-on, as well as reach out and find other deaf individuals who have succeeded in their areas of interest, and how, and why. Yeah, deafness can be a big deal - but at the same time it isn't. With the right kind of environment, it really isn't.
I applied for a job earlier this month, and got a prompt email response praising my resume as well-qualified, with the inevitable line, "Please give me a call at xxx number so we can discuss this further." Oh, jeez. This again. Obviously I hadn't mentioned the whole deaf thing from the start; it was completely irrelevant. But obviously it had to come out now. So, taking a deep breath and feeling vaguely abashed (as I always do in such situations), I fired off a reply explaining that phone calls weren't an option for me, could we meet in person or email, et cetera. The answer I got: "How wonderful that you have gone this far in spite of being deaf." Uhhh. Yeah. Gah. And then a few evasive lines about being uncertain of whether I could manage the job because of my phone incompatability and challenges in receiving verbal feedback. Well, so much for that.
This is just one recent instance (and a pretty mild example, at that) of several things that I keep running up against. The necessity of labeling myself as deaf - which I am, yes, on one hand - even while I feel like I've morphed into some strange organism with head jumbled full of noise. Deaf, but not entirely. And not hearing either. The question of what I will be able to accomplish or do at any time in the future, and the uncertainty that accompanies such a state of flux. The assumptions that hearing people make, that everyone has the same mainstream abilities. The way I myself make these assumptions, that other people can see or run or jump or be athletic or learn quickly or eat an unhindered diet. (This bothers me. I hate assumptions, and hate that I should make them. But, in the end, aren't they necessary for collective groups to function?) Finally, the resentment that a deaf individual with my level of proficiency (in academic accomplishment, in verbal skills, in whatever) should be considered "exceptional." The perception that deafness is some sort of terrible barrier against high achievement.
Don't get me wrong, deafness can be a terrible barrier. No one knows that better than I do. But what most frequently makes it terrible, in essence, isn't the competence of the deaf individual in question - it's simply that the way the mainstream world works is incompatible with what that individual needs to thrive. Language. Accessibility. Early intervention. Visual media. Understanding. A social and therapeutic safety net. That this ideal environment doesn't exist isn't anyone's fault, not entirely. It's a problem that I don't quite know the answer to, but it bothers me constantly. Deaf people (contrary to the old moniker) aren't dumb. But I look around and don't see any of them at Stanford. I doubt there are very many at Harvard, Princeton, or Yale, either. I see very few of them in high-functioning, mainstream professions. I literally never see cochlear implants when I'm out and about. I think I'd just about do backflips if I ever glimpsed one. Growing up, I never had a deaf role model - my world was full of hearing people, and I wasn't sure what to do with myself. Many of the deaf peers that I had while growing up currently struggle in school, or hate it, or gape that I can achieve grades and acknowledgements and milestones on par with my hearing peers. In such a world, it's easy for me to forget that other accomplished deaf individuals exist.
This could be cause for me to celebrate and feel smug, but it isn't. I am reminded of how much I want a world where it's simply ordinary for deaf individuals to succeed to a high standard. It's not just that I don't want to be singled out. It's that there is no real cognitive, biological reason why more people with hearing losses shouldn't have the opportunities and experiences that I have had. (Social, political, psychological, and individual trends come into effect instead - now those are the snarky ones.) Why me? Why should I have this, if others don't?
This isn't a post intended to lay out areas in which the framework of deaf life in America could improve - clearly there are many - but, rather, a bit of a meditative outburst. These outbursts happen to me every once in a while, and I think the current one is worthy food for thought. This year I'd like to grapple with such questions a bit more head-on, as well as reach out and find other deaf individuals who have succeeded in their areas of interest, and how, and why. Yeah, deafness can be a big deal - but at the same time it isn't. With the right kind of environment, it really isn't.
Thursday, January 13, 2011
To the Mattresses
As I think was apparent in my last post, this is where the real work begins - or continues! My time after returning from a quarter abroad was largely a time for me to regroup, to literally and figuratively catch my breath, and I did little structured listening outside of a few covered-mouth conversations. Leading up to my remapping two weeks ago (which, in a nutshell, readjusted the electrode input and gave me a new program with a noise-reduction filter, which has been amazing for loud/distracting/overwhelming places like restaurants - I find that I can make out individual voices from among the hubbub!), I was content to let things glide along for a bit.
But now that I've returned to the structure of classes and the college lifestyle, I'm a bit more motivated to pick up the listening-exercises pace again. This is especially true after jumping back into an environment in which I'm surrounded by hearing people who: 1) unthinkingly assume that my abilities will be up to "normal-person" par, 2) ask me how the hearing is going (a natural question to ask, since I haven't seen them for so long) and therefore make me want to stay in practice, or 3) seem to have no idea how much my life has changed in the last six months, making me feel simultaneously dismayed and gleeful. Yes, a complicated mix, but that's the way things go.
So, I'm dogged again. The audiobooks are back. Appointments with an auditory therapist are upcoming. In class I challenge myself to listen, really listen, to the professor and predict what he/she says before the interpreter signs it. (Amusingly, this has brought up several instances where I notice that the interp has misstepped or paraphrased. Score!) Phone conversations - after literally a three-month hiatus - are working their way into my daily schedule.
These conversations have been the hardest part. They're not "conversations," per se, in that when my parents call we're not talking normally about anything. Rather, they're structured listening exercises, often accompanied by computer instant messages out of necessity. The usefulness of technology. Talking on the phone is way harder than talking in person, mainly because the range of frequencies inherent to human speech is literally compressed over the connection. Hence, speech doesn't sound like what I'm used to. It doesn't sound as dynamic and lifelike. People tend to sound far away, whispery or muffled, or just plain strange. Complicating the problem is the fact that I have absolutely no real previous phone experience with hearing aids to fall back on. I'm using the phone for the first time in my life. And sitting in a room by myself with a receiver pressed to my ear, straining to decipher the disembodied voice from the other end, is a real whoa! moment. It feels unnatural, I almost don't believe that I can do it, I start to panic, and the vicious cycle begins.
But, as with everything else, I've found that practice is key. Three days this week I've gone to the mattresses with the phone. The first time (also my first time since September, mind you) I was a wee bit too ambitious, and ended up feeling shaken, to say the least. Tonight I was actually smiling, picking up on impromptu bits and sometimes finding myself able to automatically reply. A bit like doing headstands at times, but the confidence that practice brings is astonishing.
Now, what happens when I do this every day? I can't wait!
But now that I've returned to the structure of classes and the college lifestyle, I'm a bit more motivated to pick up the listening-exercises pace again. This is especially true after jumping back into an environment in which I'm surrounded by hearing people who: 1) unthinkingly assume that my abilities will be up to "normal-person" par, 2) ask me how the hearing is going (a natural question to ask, since I haven't seen them for so long) and therefore make me want to stay in practice, or 3) seem to have no idea how much my life has changed in the last six months, making me feel simultaneously dismayed and gleeful. Yes, a complicated mix, but that's the way things go.
So, I'm dogged again. The audiobooks are back. Appointments with an auditory therapist are upcoming. In class I challenge myself to listen, really listen, to the professor and predict what he/she says before the interpreter signs it. (Amusingly, this has brought up several instances where I notice that the interp has misstepped or paraphrased. Score!) Phone conversations - after literally a three-month hiatus - are working their way into my daily schedule.
These conversations have been the hardest part. They're not "conversations," per se, in that when my parents call we're not talking normally about anything. Rather, they're structured listening exercises, often accompanied by computer instant messages out of necessity. The usefulness of technology. Talking on the phone is way harder than talking in person, mainly because the range of frequencies inherent to human speech is literally compressed over the connection. Hence, speech doesn't sound like what I'm used to. It doesn't sound as dynamic and lifelike. People tend to sound far away, whispery or muffled, or just plain strange. Complicating the problem is the fact that I have absolutely no real previous phone experience with hearing aids to fall back on. I'm using the phone for the first time in my life. And sitting in a room by myself with a receiver pressed to my ear, straining to decipher the disembodied voice from the other end, is a real whoa! moment. It feels unnatural, I almost don't believe that I can do it, I start to panic, and the vicious cycle begins.
But, as with everything else, I've found that practice is key. Three days this week I've gone to the mattresses with the phone. The first time (also my first time since September, mind you) I was a wee bit too ambitious, and ended up feeling shaken, to say the least. Tonight I was actually smiling, picking up on impromptu bits and sometimes finding myself able to automatically reply. A bit like doing headstands at times, but the confidence that practice brings is astonishing.
Now, what happens when I do this every day? I can't wait!
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