Thursday, June 3, 2010

(Great?) Expectations

Exactly one week before my surgery. Seven days. How did it come up so fast? Technically I'm still in school, and should be spending all of my time studying for final exams, but this has been weighing too much on my mind.

Really, it's hard not to think about it. Every night I end up lying in the dark and pondering what I'm getting myself into. I think, I dream, I wonder. Admittedly, I fear.

With the CI always somewhere near my thoughts, my daily routine feels different. I keep getting the feeling that I'm just going through the motions before something fundamental changes. It's hard not to be impatient with the daily challenges of being deaf - it's been two decades, enough already! - but at the same time it's hard not to shrink back. I regard my impending surgery as a cave in which anything could dwell. Once I enter that cave, the cave (supposedly) of sound, what will I find there? Some magical unicorn to carry me off on its wings, or a mucky little Gollum, in which I will be disappointed? Will my surgery succeed or fail?

Even my hearing aids sound different with the thought that, soon, I may be hearing much more. I attended an event this past weekend where there was music, and sat concentrating on it as hard as I could, painfully aware of how little I could hear. To my mind, it was just flat, dead noise - nothing sublime or ecstatic or provocative or beautiful. If anything, I felt as if I were listening through a thick wool-lined coffin - though of course how would I know what that sounds like? I would rather have not heard it, would rather have felt only the beat instead, but at the same time I wondered whether, one year from now, the same situation could bring me joy.

Lipreading, too, feels strange. I am thinking too much. This week I've attended several social functions, it being the end of the school year, and have felt as frustrated as ever by the challenges of communicating and understanding in such large groups. But this frustration is buffered by hope. And detachment. And impatience. I find myself studying people's faces and wondering if, maybe, there will come a time when I can absorb pertinent information through my ears instead of through my eyes. People are idiosyncratic in the way their lips move, but I wonder what it means to recognize someone's voice rather than the motions of their face. Will I ever be soothed, rather than irritated, by the sound of another person speaking?

All of these musings bring me to the question of my own expectations. While I was deciding whether to get the implant or not, I asked myself what the benefit would have to be, for the whole cumbersome process to be worth it. The answer was surprisingly easy: if the implant helps me hear even a little bit more than I do now, I'll do it. When I met with my audiologist, this is what she thought might happen. Her prognosis was cautious, as I've found is normal: there are no guarantees, and I could make huge strides or small ones. But, regardless, I might as well face it. My hearing right now is so awful that what is there to lose?

This still doesn't translate into a fundamental list of what I'd like to get out of my CI.

Here is my list:

1. Have some clearer recognition of words based on sound alone
2. Rely less on lipreading (even if I do rely on it to some extent); consequently feel less tired at the end of the day
3. Experience fewer situations where a person exclaims, "Can you hear that?!" and I respond, "Nope."
4. Distinguish higher frequencies and pitches I've never heard before
5. Maybe, maybe be a little bit happier/more comfortable in a group

Here is the hearing-person list:

1. Talk on the telephone
2. Listen to music, understand the lyrics, and LOVE it
3. Turn off the captions
4. Don't use interpreters
5. Basically function normally

Many hearing people do not realize that a CI is not a miracle cure. I will never hear everything. I will never function entirely like them. Likewise, they often do not realize that the process of getting an implant is not as easy as putting in a DVD then pressing "play." At first, my brain will be overwhelmed. I will have to rely on neural plasticity, to form new synapses and connections, to train myself to interpret noise as something meaningful. This will take many months, if not longer. I keep being told how much hard work and commitment this will require. Hey, after 18 years of speech therapy, I'm not afraid of that!

In short, I think I'm realistic. But it would be amazing if what actually happens ends up being closer to the hearing person list than my list. And, besides the fear that the implant will fail, that is the question that has me on pinhooks. Just how much do I have to look forward to, anyway?

Finally - since prelingually deaf implantees are rare, how cool would it be if my experience were something like this?:


  1. This all is really interesting to me.. I am very happy with all of this reasearch you have done!!Chris

  2. You are a beautiful writer, have I told you that recently? =] Your blog is really interesting to read!

    I guess I didn't really realize how hard it was being the only deaf person in a huge university, but I think I got a little taste of it here. I went to build houses with a bunch of Chileans for a weekend and, although my Spanish is fairly good, I definitely felt the language barrier. I understand now how you feel when everyone is talking at once and you don't catch more than a single word here and there. I could understand and talk when it was one on one, but I felt stupid sometimes asking for them to repeat themselves multiple times. And in general, I just couldn't really add anything to the conversation, didn't really share myself. I got pretty quiet, and I was just quite alone...and I've never really been lonely when I'm with a bunch of people before. It wasn't very fun, and I admire how you must try for so long while I can go back at the end of the weekend to my English-speaking friends here at the center.

    I also didn't realize what a big decision this was for you. When I first heard of the cochlear I was like cool, would that work for me? Alas, no, and not really necessary either. Our class covered some of the controversy and how it wasn't the perfect solution. We also talked a fair amount of the whole Deaf world-hearing world antagonism that sometimes exists. Would you be interested in doing more things in the Deaf community?

    Anyways, I wish you the best of luck, a safe procedure, a speedy recovery, and a successful journey into the tinny CI world. Plus enjoy your summer! Once I get somewhere were I can actually most video messages to your wall (I don't know why it doesn't work) I really promise to do so more often! Meanwhile I guess we can e-mail.