I do not know what to call this.

January 27, 2012 – 6:56 pm

I write again tonight to sort my brain out. Bear with me; it’ll take a little while to get past the facts and through into the thinking and maybe a little of the feeling.

Purdue has a kickass audiology department with a student clinic that does full hearing tests for $10 (if you’re a student). I’m at least 6 years overdue for mine, find so I went in and got mine done this week. The people were great. The grad student and the audiologist were both cool, viagra dosage sharp, patient with my questions, appreciative of the detailed answers and feedback (“it’s nice to get someone who knows about this stuff, you’ve done your homework!”) and encouraging of my interest.

The test results were a little bit surprising; my residual hearing is in the low frequencies, and the mid-range of what I’m able to hear has apparently dropped about 30dB in the last decade, which is a nontrivial and unexpected shift.  I’d want to remeasure before freaking out, and I’m not freaking out about that drop (so I go from hard of hearing to… hard of hearing? big deal) but I don’t want to lose what I’ve got, and they said it wasn’t normal for hearing to just spontaneously drop in someone so young. But by and large, I’m in the same place I’ve been for the past 2 decades. Cool.

We talked about hearing aids. My hearing loss has always been one of the most difficult to amplify, and this is still the case. I’ve got high-frequency sensorineural, sweeping down through severe and into profound – “profound” is the step right next to “stone deaf.” Sensorineural means it’s the last step in the chain-o-hearing that’s broken, so we can’t bypass anything short of jacking directly into my brain (which is what cochlear implants do).

Things have come a long way, especially in the past 2 years, for people with my sort of loss. Amusingly, some of the things they’ve implemented in hearing aids recently are the same things my friends and I tried in SigSys when we were undergrads. (I can verify that frequency compression sounds terrible.) However, when you get down to it, hearing aids can’t isolate the sounds I can’t hear without bludgeoning the sounds I can hear to death — if we turn up the dial so I can get the high sounds, I’m already clawing at my ears in agony because the subwoofer is too damn loud.

But there’s a bit more. I’d noticed for years that hearing test were done with two types of sounds: pure tones and scrambled buzzing sounds that sound like very far-off beaver sneezes. So I asked why they used beaver sneezes in the hearing test – casually, expecting an answer like “oh, the two types of sounds help us distinguish between X and Y.” Instead:

“Beaver sneezes?”

“Yeah, the noisy ringing buzzer sound, the one that’s not a pure tone that you play…”

“Those are pure tones.”

So this is what the beaver-sneezes mean: my cochlea is crap. It’s rubble so far destroyed that even if hearing aids could isolate and amplify those frequencies to the point where I could hear them – which, by the way, is somewhere around 120dB, or the volume of a jet engine – I would, at best, get scrambled signals. The best I can hope for is the ability to hear beaver sneezes.

Well, shit. There goes my hope of someday working on a thing that’ll let me hear a Mozart flute concerto like a normal musician.

But – moving on! I’d decided to do the Hearing Thing this semester, and when I do something, I want to do it all-out – I want to do it right. So I’ve been taking my first trips to the Disability Resource Center to get set up for CART, to the Vocational Rehabilitation center for the state of Indiana so they can give Purdue money to get me CART, and going to the university’s counseling center (staffed by psychology grad students who are getting their clinical experience hours) because I was confused at how confused I felt about this now that I’m not pushing through everything I don’t understand by blocking it with overwork. Everyone has been very wonderful and kind.

“It sounds like you’ve worked very hard to let yourself appear as normal,” my counselor said at one of our most recent sessions.

“Because I like forgetting,” I replied. And then I stopped and did a double-take at what had just come out of my mouth.

I do. I like forgetting. For someone who advocates awareness at all times… I like forgetting. I like it when my family forgets. I like it when my classmates go “no, really? I couldn’t tell!” I like it when I can go hours – days, sometimes – without thinking about it, all my adjustments so automatic and unconscious that I’m only aware of them when I stop and analyze in retrospect. To me, that feels like success, to do something that’s really hard to do so well that nobody – not even me – notices that it’s happening at all. Bearing this cognitive load all the time and being able to ignore it? To me, that feels like strength.

On the other hand, wearing a weighted vest at all times certainly might make you (muscularly) stronger, but it’s also kinda dumb.

I don’t know why I should be scared of learning about this, but I think I am scared, a little. Finding out more details about my hearing that I didn’t know before, thinking about, okay, do I want to make changes to my life at some point trying to fix that, what’s the cost/benefit analysis here, do I want to do things that will visibly mark me as different, do I want to think about cochlear implants (ooh, geeking out about shiny technology!) or do I want to say screw it, I’ve got other things to do with my time, because that’s what I’ve done with nearly every decision about this that’s been mine to make…

I’ve always mainstreamed and tried to be a “normal” person, and I can pass — but maybe this isn’t as good a situation as I could be in, and there’s no way to find out whether something else is better without trying it, which means an upheaval of equilibrium, a gambling of resources. Now that I’m doing bigger and harder and more awesome things, I’m starting to run into my hearing as a limiting factor. Maybe not a hard blocker, but as something that saps me, slows me down, to a degree I notice now in a way I haven’t before, with my tiny little schools and the text-based world of my career in open source. My world is huge and open right now – I feel unlimited, I can go anywhere without help… but maybe I can’t go some places as easily as I could otherwise. I’m not sure what “otherwise” is.

Sit in the fear, Mel. Sit in the weirdness and the questions and the things that aren’t resolved. Sit in the discomfort, and keep moving, but don’t run away because you’re scared, and don’t forget the other things you have to do.

Why is the balancing so hard?

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  1. 9 Responses to “I do not know what to call this.”

  2. *big giant hugs of keepin’ on*

    By Sumana Harihareswara on Jan 27, 2012

  3. Thanks for sharing this — it sounds really emotional, and really tough. But I admire how present you are to yourself.

    Keep on keepin’ on. You’re one of the most awesome people I read, Mel. Reading this makes me think about my own vulnerability and the places that I don’t think I can go–and about how to push myself into the edges of that place between comfort and discomfort.

    Thanks for that.

    By Jodi Schneider on Jan 28, 2012

  4. Very courageous, in a way that’s moving and inspiring. Thanks so much.

    By Rob Tiller on Jan 29, 2012

  5. Best wishes with your thinking.

    Speaking as one whose interest in implants is totally casual, the optogenetics stuff looks like it might be worth waiting for.

    The buzzing thing is puzzling. If Beament’s book[1] is right, each nerve fibre is supposed to be able to encode any frequency irrespective of its position in the cochlear, so I would have thought you ought to get the right frequency once they had pumped it up loud enough. But maybe something more complicated is going on. I’m not sure that that book represents the current scientific consensus (or even that when it was published).

    What I wonder about personally, is what would happen if science could supply us not with an audio input, but an audio output. The mark one human has huge input bandwidth and trivial output bandwidth. What would happen if we could change that? Science fiction writers go on about mind uploading and electronic telepathy, but simply to have an audio output would be a huge change over the status quo.

    [1] http://www.amazon.co.uk/How-Hear-Music-Relationship-Mechanism/dp/0851159400/ref=sr_1_2?s=books&ie=UTF8&qid=1327860856&sr=1-2

    By Alex on Jan 29, 2012

  6. “… jacking directly into my brain… ”

    The only thing that stops me (otherwise pretty healthy) from wanting this is worrying about how many times i’ll have to get poked by needles before it can happen…

    By Mark Hoemmen on Jan 30, 2012

  7. btw, it’s awesome and inspiring how you’re attacking the problem, seeking out all the resources you can use to help your whole self out. Funny how the main value of counseling sessions seems to be forcing yourself towards insights…

    By Mark Hoemmen on Jan 30, 2012

  8. Sometimes I read your posts and its like Dumbledore’s Pensieve, we dive into this silvery pool and get transported into a far away world and sense what its like to be a Mel. And you’ve got this bravery thing down pat, staring into the eyes of a fire-breathing Dragon and grabbing the needed artifact to finish your journey.

    By Kevin Mark on Jan 30, 2012

  9. @Mark: Well, that and it’s permanent. You’ll forever have an electrode array going through your skull (there’s got to be a component on both sides, so you’ll have stuff sticking through your cranium, sort of like getting a head piercing). And the electrode array you start out with is the one you’re stuck with forever — you can’t take it out without damaging the cochlea beyond all repair (i.e. you’ll be completely deaf) so you want to make sure that you’ll be permanently happy with the resolution of the electrode you’re putting in.

    Right now, the resolution isn’t good enough to make music sound reasonable — think about listening to a really, really crappy mp3 at low, low, low, low sample rates, and imagine hearing like that forever… and then consider that I’m a classical pianist, and it’ll be pretty obvious why I don’t have an implant yet. Holding out for some better tech — I’m young yet!

    By Mel on Jan 30, 2012

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