The world is so loud. Not painfully loud; it's not that the gain on my hearing aids is turned up too high (trust me, I know what that feels like). But full of information -- so much information, coming in simultaneously, relentlessly. And I wonder: if I've gotten back just a tiny slice of hearing and feel this way, when I still have a giant swath of sound I'm still profoundly deaf to, about half the frequencies hearing people have -- then how much more for those who start with less and end with more? People with cochlear implants.
Yesterday I found Beverly Biderman's book Wired for Sound, where she describes her CI. Biverman is a computer systems analyst, not too far removed from my engineering training, and she writes thoroughly and analytically, doing the sorts of systematic mental sweeps and deliberate experimentation that I'm doing now. Her deafness was progressive, the loss genetic. Tracking the numbers she gives from her audiogram in the book, her hearing slid from better than mine to worse than mine around her teens, slowly. Her father had the same thing, so she could see a preview of her deafness growing up -- the things you miss, but also the coping mechanisms, but also how inadequate they are in the end. I've never had a preview; all the key people in my life are hearing. I don't know if one way is better than the other. I think they're just different.
But oh, someone who writes the words I think, and more! How loud and confusing things are, and the technical reasons for the auditory inputs that cause emotional puzzles to be figured out. She describes environmental sounds as "torturous," and her first day contains many of my own experiences:
[my audiologist] runs water in the sink, and it sounds like Niagara Falls (close-up); he crumples up a plastic bag, and it makes a harsh crackling sound (I thought plastic bags rustled softly in peace); he opens a door that squeaks loudly (why hasn't he oiled its hinges?)... I arrive home, come through the door, and trudge upstairs with heavy feet and a heavier heart, making a whistling noise at every step. My teenage son, Nic, is away at a summer camp, but Bob is upstairs at his computer. He turns excitedly to ask how it went. He can tell from my face that I am miserable. "Listen," I say, "there's something the matter with it," and I sway back and forth in the hall from one foot to another, whistling as I sway. "Oh, that," he says, relieved, "those are the floorboards creaking." I discover, for the first time, that there are loud creaking floorboards everywhere in my house. When Blossom, the dog, walks, she too makes them creak. I flirt briefly with the idea of moving to a house with concrete floors.
I don't have a teenage son or a husband or a dog or a house with floors that creak, but the contradiction of "oh boy, new sounds! oh god, I want to get away from them!" is dead-on: Thursday morning I sat outside my classroom for the first hour, a pit in my stomach, unwilling to plunge into the cacophony of small group discussions inside. (I finally go in when the professor comes out and sees me.)
Out grabbing BBQ with classmates, I grit my teeth into a grin -- I'm hearing their voices rise above the background noise for the first time, but the background noise is a detailed onslaught and I don't know how it is that I can understand them. It's as if they swum below the surface of a calm lake before, but now I see thrusting hands, knees, elbows, heads bobbing above the surface of a Class 4 rapids. I see you! And I see so much turbulence around you, I don't know how it is that I'm telling you apart from it...
All the same, I'm amazed that I can actually understand and participate in the conversation at the restaurant without constantly needing to wrench at its steering wheel. Some deaf people cope with conversations by dominating them; the only way to participate is by controlling the flow of topics so they can understand what's said; I'm not quite that way, but I do tend to start new topics rather than respond. It is unusual and wonderful to be able to slip -- somewhat -- into the back-and-forth, instead of always going forth, forth, forth. But it's a different conversation dynamic that I wouldn't be socially used to if it weren't for the years I've spent working online in open source communities; there are subtleties for how to do that back-and-forth that aren't so much about hearing-and-understanding as they are about the unspoken etiquette of how and when to respond, and thank God I was able to watch and then do this in text first, or I'd have no clue. Translating online conversation skills to in-person ones is not an automatic process, though. I feel my brain scrambling to do it in the background.
Bev talks about faking it, the time-honored way to hide one's disability (of any sort that isn't visible). She talks about the burden that her deafness places on her (hearing) husband and son, of the way she tries to work her life around not making phone calls so they won't have to place them for her, how they don't go to many parties or watch many movies so her husband won't need to watch out for her, explain the dialogue to her, catch her up. Of how much her disability weighs on their lives, and of the guilt you feel knowing people you love are bearing that for you.
And I nod, because as much as I do trust my boyfriend, I am afraid that someday the tipping point will be reached, and things like replaying the speech in movie scenes after the movie, or always being the one paying attention to airport announcements, will go from sweet to tiresome. It's one thing to be your girlfriend's second pair of ears during the rare moments in your long-distance relationship that you (joy!) get to see each other, but will that still hold if it happens all day, every day, day after day, year after year? When the bulk of your communications aren't in text, a level playing field for her? Babysitting a small child is fun for a few hours, but being a parent is exhausting -- and my hearing isn't something I'll grow out of.
And so I try to be as stubbornly self-sufficient as I can, and anxiously pray: please don't let this be too much, please don't let me be a burden, please don't let me get anyone stuck in a place where they're exhausted but can't or won't put me down. I don't want anyone to bear a cost for being with me, but since I can't prevent that, I must overcompensate for it in order to be worth it. (I know, I know, I've been told these aren't useful ways of thinking -- thing is, they have been in my prior life of being-alone. We're working on it. I struggle mightily with relationships and feelings and things like that because my defense mechanisms are so strong.)
Bev talks about the aural world becoming full of emotions; humans respond more emotionally to sound than sight, and I (who never cry) am close to tears reading this book, need to choke back feelings now when I walk around the world with hearing aids on. Bev talks about being able to hear the emotion in speech -- the voices that crack, the nuance in words -- and the emotion that so many sounds stirs up; it's not a single surge of thanks and praise at "wow, new sounds!" (as I think my father would oversimplify it to), it's the... not being able to logically process (and as an engineer, I love to logically process!) this new world that your old one's been replaced by.
It's probably telling that during my first 24 hours with hearing aids, I gamely (even enthusiastically!) plunged into conversations with the audiologists, with my advisor in a noisy coffee shop, with Jen and Seb at a restaurant, in their backyard -- they were all functional conversations, debugging, testing, trying to get work done, swapping factual matters: that's a bird, can you hear the "sch" sound now, here's what code you need to write before next Friday. I soldier towards Getting Something Done -- no room for emotions here, just curiosity, finding what works and discarding what doesn't. And then I finally Skype with Sebastian and it's not a functionality-mode conversation about getting anything done, and I just want to communicate, reach out and connect with someone who means a tremendous amount to me -- and his voice sounds strange and unfamiliar and I'm struggling to understand it and it's only then that I start to crack.
One of the interesting parts about hearing more is that it makes not-hearing much more salient to you, now that there are two points of comparison instead of one you cannot see (or hear) beyond. I'm more aware of how many times I decide the cognitive effort of listening is too much, tune out a conversation and go into my own world -- it happens subtly, constantly, unconsciously, repeatedly every few minutes (at least!) in a classroom or a social gathering. I notice how much more I can participate in conversations now... and of how much I still can't. Bev's descriptions of how much more she can hear with her cochlear implant also show me how much I still can't with my hearing aids: the sibilants ("s," etc.) at the ends of words, the ocean.
Approaching the cottage from the road, I am surprised to hear a steady high-pitched tinkling sound. It is the sound of waves in the bay. Normally I would hear just a single wave lapping softly in front of me while standing at the shore. Now I can hear millions of waves crashing into one another all across the bay far from the shoreline.
Oh, I think. But the ocean only sounds like one wave crashing at a time. This tinkling, this many waves together? I have never heard that sound. I still can't. But it's there to be heard, and a cochlear implant let her hear it, so maybe...
But I know the struggle of the brain-technology interface would come again, and I need to get through this one first before considering a larger one. And to come closer to normal while knowing you'll never even get near it, to gain more hearing in a way that makes you realize you are and always will be deaf, will never quite connect with the world -- that's painful too. That's what you miss: connectedness. Hearing gives you peripherality, the ability to be surrounded by and aware of and reacting to what's not directly in front of you. I mostly respond to things I'm actively concentrating at looking at: somebody's speaking lips, the fingers of a guitar player, beautiful cinematography.
I'm lucky -- I have enough hearing to respond to my environment, but with my hearing aids I understand better how few and small and soft the things in my peripheral auditory world must be, compared to that of my friends. My ADHD exacerbates this somewhat by making my brain mostly aware of what's temporally in front of me -- there is now, and there is not-now, and that's it. So my world is this: what I am looking at, right now. Everything else in space and time fades away. And for anyone with ideas of how idyllic it must be to live in the moment all the time: I hate it. Because there is so much more than the moment, and I know it. And I want that too.
It turns out that I've evolved all of these complex ways of flickering and filtering and manipulating a large world through my small window -- a mental swap disk, a single sensor madly sweeping across space, trying to simulate and interpolate what's happening in the world when I'm not looking at it, compressive imaging... I read about these engineering projects focused on wringing more and more information and more understanding out of less data, and I see glimpses of how I might analytically understand my brain.
And now I feel myself aching for music -- classical music, sound with emotion plotted out already on the page, emotion I can preview and control. Where is my piano? Where are the songs I used to play when I was little and needed to pour my rage out through my fingers? I feel this urge to drive home to my old baby grand, the nearest piano I know of that I have access to -- besides, Megan is here for another two days, and I have fig-steeped bourbon that I know she and Mark and Randy would enjoy. I'll have missed Mass with my dad by the time I arrive (not a bad thing; if I hear any prayers of praise and thanksgiving for my hearing aids, or intercessions for a miracle to remove my deafness, I will snap) and I'll only have a few hours since I need to be back here for classes in the morning, but... maybe.
I'll figure out what I have to do, see if I can do it from Glenview, and then make a call.