Silence has shaped my life in ways I never wanted to admit. Lipreading is hard, people. I'm still wandering this space -- explorations, not conclusions -- here's a wandering.
It's hard to hope for something you believe to be impossible. I never wanted to pray for "healing" or to "hear more" or whatever as a kid, because I was smart, read the research, analyzed my own experience. We can't regenerate hair cells, technology is unreliable, and as a smart kid I could do better for myself than any "assistive" things clueless adults would give me -- which were made for old people and less-smart deaf kids in any case, so you people have nothing for my cocky 10-year-old self (at least not that she could see). If grownups were going to whine about my situation, it was left to me to know it was unfixable, suck it up and deal. I'd show them all, dammit; I had to teach them. Every fiber of my tiny child's being knew that I was on my own.
When I first read Ender's Game and came to the parts where the adults explained how they isolated Ender so he'd grow up believing he was fundamentally alone -- that even if he had friends, nobody would ever help him -- so he'd become self-reliant enough to save the world all by himself even if it killed him -- I remember thinking well, at least they knew that's what they were doing to him. But I'd unintentionally been set inside the same curriculum, and there were two opposing voices shouting over me -- "she's smart and will do awesome things!" and "she's handicapped and will have Difficulties!" and at some point I stopped listening and just worked with a fury, because work was what drowned out those voices. Things I heard too well, wanted not to be shaped by.
It's hard to hope for something you believe to be impossible, but now -- I don't know what I believe. I figured out -- after three months -- what the strange sounds in Tabitha and Danny's house are. Windchimes. I knew they made shimmering, ringing chords, but now I know. My four-hour drives to and from Ohio are filled with audio lectures -- hearing aids on maximum volume, minivan stereo as loud as it will go -- the speakers rumble and I can feel my pants, my jacket, my ribcage vibrating with the blasts of sound, and still my mind strains to hear and understand without lipreading -- but I understand. Enough to piece together some ideas. Just enough. And voices -- they don't just have consonants; they also have emotions. People have feelings, and those feelings affect the way they talk.
Again, I knew this. I read books, and I always scoured the passages where sounds are richly described -- authors writing internal thoughts of fictional musicians, dancers explaining how the music makes them feel, travel/adventure writing where the hero/heroine is rapt with new, exotic sounds inside the desert/jungle/temple/city/wherever -- I know what's supposed to happen, how other people describe it. In 4th grade I wrote a story about a boy that gets lost in an artificial jungle-zoo, and the teacher called my parents because I'd written down a soundscape full of sounds I'd never heard (birds, smoke, rustling, wind) and the grown-ups (again, the grownups) wondered how did she do that? I fake it well; I build those worlds inside my head according to the rules of writing I have read. An auditory Markov chain, extrapolated.
This semester, Dr. Lather read my fieldnotes and asked: did you really hear that? How did you know these things were making that noise? And I said I didn't actually; I had been told these visual cues corresponded to these sounds, I saw the cue (chairs dragging) and I saw people responding to the sound (dragging chairs slower, picking them up, wincing), and so I wrote the sound -- I had perceived it, just not heard it. Was it dishonest for me to write that down? That's how other people would understand it, so I -- even in my fieldnotes -- passed as hearing, didn't say I wasn't...
They tested me once, when I started school, to see if I was falling cognitively behind. I remember cards with pictures that I had to order, questions grown-ups asked me, a line drawing of a cartoon astronaut colony on some alien planet I was supposed to invent a story for -- a long day in a small room with adults that Kindergarten Mel had never met before. I thought it was fun. I knew I had scars on my chest, one on my wrist from the IV. I remember standing in an elevator, wearing overalls, a band-aid on my throat -- a memory from when my tracheotomy was healing. I hadn't yet become self-conscious about wearing swimsuits. I grew up and complained about how overprotective and dramatic my parents were -- their voices went shaky and said things like WE ALMOST LOST YOU! and I was angry and 16 and wanted to CROSS THE STREET ALL BY MYSELF PLEASE and don't hold that as a power over me I'm FINE.
I read my medical records, finally, at some point during college. I had to look up acronyms like "ARDS." It "...leads to impaired gas exchange with systemic release of inflammatory mediators, causing inflammation, hypoxemia and frequently multiple organ failure," says Wikipedia. "This condition has a 90% death rate in untreated patients. With treatment, usually mechanical ventilation in an intensive care unit, the death rate is 50%."
Well, shit. (WE ALMOST LOST YOU!) I don't know (WE ALMOST LOST YOU!) what any of that was like (ALMOST!) because I was (LOST!) in a coma in the ICU (YOU!) for nearly two months. My first memory of Children's Memorial Hospital is marching back and forth onstage during a fundraiser with my Mickey Mouse doll on my shoulders -- no tubes in that memory, no wires, no ventilators, just my doll and very bright stage lights and grown-ups talking about things I wasn't paying attention to.
I found the test results from all those colored cards and astronaut stories and guess-the-pattern things in my medical records, too. There were numbers, but I had to track down papers that would tell me what those numbers meant. The papers said this score was good, this score was above average, this score was excellent, this one above excellent, blah, blah, blah -- I kept reading. Where's my number? Tell me what my number means. The scale stopped, and the paper said: that's all this IQ test can measure. Your score was too high.
And I was furious. They knew. The pity -- "what could she have been if she were hearing?" -- and the worry -- "...DIFFICULTIES and might fall BEHIND" -- and the -- "that might be too HARD for you" -- and the "well are you SURE you want to DO without SUPPORT SERVICES" and all the grown-ups, all my life, just trying, trying, fumbling towards trying, dammit I'll just have to do it all myself...
The power and the loneliness of self-reliance in a world that doesn't realize how terribly cut-off you are. If you are a child who feels too deeply, you learn how to mute those feelings for survival, how to fill your head with difficult books, keep your mind occupied with brilliant voices, drive the noise of your intellect so loud that you are too busy to remember that you're living on an island, make it normal to forget how hard it is to reach out from your space because you've never run without that leaden jacket and you still run fast, astonishingly fast...
If you've only seen me in person, in classrooms, charging to the board, sketching, vaulting tables to join small conversations all the way across the room, a whirlwind -- you have no idea what I'm like when I can hear all of the conversation, how nimbly I navigate a space. And you who have only seen me in text, where I can read everything, nudge and shape multiple complex dialogues at once -- my writing carries only portions of my energy; my body in a room can do much more. And if those two -- the real, physical world and the world of easy, total conversational understanding -- could combine -- I don't know --
I was angry. Anger fueled my war with myself, my isolation, my inadequacy. Got me to do lots of awesome things, meet awesome people, suck up learning like a whirlwind, grow up with a skepticism towards boundaries, habits of shattering them. Where else would this energy come from?
It wasn't until an icy Palm Sunday that I decided I was going to let that anger go. And Reconciliation afterwards was quiet, anticlimactic -- maybe disappointing, if I hadn't gotten used to silence during Lent already. But I sat inside the chapel afterwards praying my penance in the corner, and I started sobbing silently -- and then stopped, just as suddenly. And didn't actually feel any different, but... I wouldn't, would I? Our hearts are slow and quiet things sometimes. I stood up and went dancing, because that's why I was in Missouri.
These are fragmentary stories patched together, joined but interrupting -- I don't have a master narrative; all of these tales are oversimplified, I need to contradict them at some point, because this isn't a child's simple forensic truth, this is a life still being lived, a patchwork. How can I choose to tell some tales and not others without saying that there are tales left untold, stories that might change your impressions if you heard them, make you see something I've said here in a different light?
How do I end this stream of writing? I want contact. Communication. Connection. Communion. ASL is beautiful, but it's not my native language; I could be fluent, unlock another world I could move within more easily -- but so much of my life wouldn't follow me there. People I love. The work I do. What is a home if you can't interact with anyone in it, if you remain oblivious to so much life within it? I want to hear my baby cry, I want to hear the door click open when my husband walks into the room, I want to hear my children whisper stories to me in the night after I've turned the lights off, tucked them in. I'm learning I would want so much, if it weren't a waste of energy to hope for the impossible, if it weren't so painful to stand with your heart wide open for years and years aching for something you'll never get.
But these three things remain: faith, hope and love. And I've historically worked on the first and third, ignored the second. But that's one of the things that happened over Lent this year; I give myself permission now to do all three.
I'll stop. I don't know what this was.