Thursday, March 24, 2011

The D-Bomb

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.

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.

Monday, March 7, 2011


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.

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.