Cochlear Implants & Deaf Culture

How hectic it's been lately! School started today. I found that while I know where all the buildings are now and can even direct someone to a building easily, managing my time isn't quite as easy. Sigh.

I know someone who is getting their wisdom teeth out and that person was talking about how they were afraid. I sympathetized but felt bad for the immediate reaction I had in my mind which was this:

Afraid of a simple dental procedure? That is NOTHING compared to consenting to getting your head drilled into, for an implant you hope you'll like but which you really have little clue as to what to expect and where you received 10 stitches and two permanent bumps on your head.

I find that after receiving the CI, I am less worried about other procedures that I or others might have done to us. I also find that the CI has empowered me in other odd ways. I'm more confident about my choice to make decisions because I made what is one of the biggest decisions of my life and I haven't regretted it for a single moment. Some people thought I would but I haven't. Like I say, "The only thing I regret is not having done it sooner."

I was texting with Tess, who I've known since I was 6 months old and who is profoundly deaf. She uses interpreters in school when she goes to school. She said, "I still can't believe you got an implant. I wouldn't have!"

I really can't relate to that sentiment at all, which simultaneously saddened and excited me. Saddened because it is yet another distinction of how I am far removed from the "deaf culture" and excited because I really am that much different than the usual "mindset." I don't mean this in a bad way at all. I am an advocate of sign language (for babies as well!) but I am not an advocate of it when it is used alone.

Many deaf people seem more receptive to the CI than in the 90s. When I tell a Deaf person I have an implant, they immediately ask, "Does it work?" then "Doesn't the constant sound drive you crazy?"

Then of course I get high-spirited and tell them of how much the CI has changed my life and how happy I am I have it. Then the usual reaction I get is one of interested listening and then a statement of how it wouldn't benefit them but it's good I like it. At least they aren't shutting me out. I just constantly wonder, "Do I REALLY think that differently? Why aren't more prelingually deaf people getting implants or at least as curious as I was that it bothers them everyday wondering "What if"?"

There is a slang word that exists in culture today- "Oreo," signifying a black person who is white on the inside. There is actually also a sign in the deaf culture for a deaf person that thinks like a hearing person and is usually integrated in the culture. It is the sign for "hearing," but signed near the forehead to signify they are "hearing-in-their-mind." This person usually doesn't have much sense of deaf culture or chooses to live outside it.

I've been called "hearing-in-the-mind" and finally began identifying myself as "hearing-in-the-mind" when deaf people would ask me if I was deaf, hard of hearing, or hearing. It was ample enough to summarize why I sign in Exact English, why I write and read as well as I do, as well as to explain the fact I (wanted to and now have) an implant which makes me uniquely both deaf and hearing.

There is no word like this in hearing culture. I have to explain I can't understand speech yet, although I hear the fan whirring above us and their voice as they ask, perfectly. I have to explain I don't use ASL. It gets tiring explaining but even tiring when people automatically assume that I use ASL because I am deaf and I never get a chance to explain so I have to find a way to slip it in there somewhere.

I feel a constant worry when meeting new people who have taken ASL classes or who think they know things about deaf people, about making sure those people know I'm NOT in the deaf culture because I fear being grouped and as a result, assigned traits that I don't even possess.

But what is unfortunate is that I believe, in order to have people listen to you, they have to feel they can relate to you. (which is probably why Obama is so popular right now, as a side note!) I want to get through to the deaf population about the usefulness of cochlear implants and about other things they might not be huge fans of. I can personally switch over to following deaf culture and customs, to signing ASL if need be, but I can never truly give myself over to it.

I used to have some people criticize me greatly for that but it seems that the deaf culture and the hearing culture, over the years, have learned how to soften both their positions and find a more common ground. I'm glad to see that because there are advantages to BOTH so there's no reason to have just one if you can have the other as well.

"You're getting an implant?"

Invariably, I'm really finding myself totally preoccupied with thinking about how surgery is SO soon and how activation is such a long way away, but yet still SO soon. I mean, I am probably more fortunate than most since the process went SO fast. I think a great deal of it has to do with the fact that the whole mindset seemed to be, "You'll of course profit from it, given that you were recommended a cochlear implant when you were a baby and you're still profoundly deaf." I think the last part wasn't a big surprise to any of us, hehe.

So there wasn't really any debate on its profitability to me, no waiting list, and the insurance got accepted happily quick, all of which I am still amazed by and still thanking my lucky stars for. They just asked for my audiograms and then got me scheduled for the appointments (which were usually spaced far apart due to the limited office hours, much to my chagrin). That was pretty much it.

(For those of you who wondered when reading this, my parents didn't get me an implant when I was diagnosed deaf because they wished to give me the choice to choose and also wanted to wait and see if technology got better. They're both hearing although both are fluent in sign.)

I think the whole formal process kind of began either February or March. March definitely, for sure. I think February was just when I started REALLY pondering and researching it. I think I got some emails fired away to various centers for cochlear implants around here.

If only I had this blog back then! =) But I never really imagined the hills and valleys I would cross, back when I was pondering it. Even when I had decided to get it, I didn't really think I would become this introspective about the whole thing. It isn't too surprising, though, when you think about it. I really think that even if one tries to treat it all lightly, one is going to find out it isn't possible to simply let it and all of its implications go.

I remember walking back from my class (it was supposed to be a speech class but I fortuitously filled out the wrong form and got assigned for a HEARING class, in which they train me to listen to words. It never got past all the testing of my speech comprehension they did, since it's on a quarter-by-quarter basis because we're an research university)

--- So I was walking back towards my dorm, and I remember it being a sunny day, and my mood being more that of a very rainy day. The entirety of my desire scared me. This put me in somewhat a bad mood. I was hearing my shoes hit the sidewalk, but REALLY thinking about how perhaps the sound I was getting wasn't enough.

Wasn't enough, wasn't enough, wasn't enough, my mind chimed repeatedly in time with my footsteps until I couldn't take it and grumpily thought, "SHUT UP. Let it go. Stop thinking about it!"

But only a few seconds later: "Huh? They actually suggested I get a cochlear implant point-blank? And the fact they were so positive about its potential to really help me out? Okay, that surprises me. Have I ever been told in such positive terms how it really COULD help me? No, stop. Don't get your hopes up. Wait.... am I actually CONSIDERING this with total openness?"

Apparently, I was.

I didn't decide automatically or overnight. Although with the fact I've been deaf for 19 years, using a hearing aid sporadically my whole life, but going years without wearing one, until just recently, it definitely seemed out of left field to some of the people that know me. Or those who THOUGHT they knew me. Shock definitely was a reaction some people had when they were told I was getting one.

I think I've always subconsciously known I would get an implant or something of the sort, though.

Growing up fully deaf, I should have been in the deaf community. But I was always standing just outside the circle. I could step in it, but I never wanted to. It's not that I dislike sign. In fact, I sign fluently in SEE* but usually sign in PSE.*

I'm deaf, but I'm not Deaf. Deaf with a capital D suggests the entirety of the CULTURE- and perhaps the ACCEPTANCE of your deafness to such an extent that you can actually be in a culture that celebrates it as normal. There has been a controversy over whether or not deaf people should get implanted- if this "destroys" their culture.

I am never going to write about this topic unless specifically requested to, for it does not apply to me. I WILL happily discuss it, and I DO have opinions on it, however. It's not a sensitive topic at all so no worries.

For me, the fact I am "deaf"--- deaf so long and so dependent on sign language that it seems to most people that it ought to be so much a part of me that I belong to the culture--- never came into play.

I never had to wrestle with the issues of whether I was turning my back on "my deaf culture." I don't have a deaf identity, period.

Walking home that day, all that was on my mind was basically, "Do those implants still look as weird as I know them to? Because if not, I'm getting one."

Then the other side of me- the sensible side, not the vain one (wink, hehe)- loudly protested. "WAIT! You need to do research! You need to find out how much benefit it can offer! C'mon!"

So I researched. I sat up nights, googling different keywords.

Cochlear implant. Cochlear implant process. Cochlear implant deaf. Cochlear implant research. Cochlear implant companies. Cochlear implant cost. Cochlear implant insurance coverage. Cochlear implant benefits.... and so on.

But I am very certain that the research I did was probably not as extensive as some. It WAS a lot of research though. Just when I got one question answered, I thought of another and another!

I do know that the decision to get one was very simple (relatively speaking) for some people. For them it was, "I'm going deaf (or became deaf out of nowhere) and this surgery will help and is the only alternative for hearing again other than hearing aids. I'm getting it, period!"

Others may have agonized over it or waited awhile so they could figure out where they stood.

But once I had "done my research" and REALLY thought about it (but I did my thinking fast because I didn't want to lose any more time) it was kind of finally a time where everything converged.

In grade school, I couldn't have really voiced I wanted an implant. Is 7 too young to convince your parents you want one, since they decided I should be the one to choose? However, if I had REALLY wanted one in grade school, then I think my parents would have considered it with me.

But I never asked for one.

I think it was mainly the fact I was in exclusively-deaf classes in grade school and I never really had to think much about how the lack of communication would affect me. There were always times when sign was definitely woefully inadequate for me, especially as my vocabulary increased, and times I encountered people who didn't know sign at all. Also, in elementary school the students that had cochlear implants had bulky processors and very strange-looking cords/headpieces. So I never wanted that.

In junior high and high school, I simply didn't think of it as an option. I was doing well in high school with my friends and peers. It did get discouraging at times, but more and more people were learning sign or thought it was really great/fun to learn. I also had my trusty phone by that time, so paper/pen was almost rendered obsolete. I'd reach into my back pocket and take out my phone. (Provoking exclamations from the people standing nearby of "Cool phone! That's a Sidekick right?") I'd start typing whatever I wanted to say on it before offering it up for the eyes of the person it was intended for.

It would take them half a minute to process it in their mind, then they accepted it. Conversation would continue. It was slower than how it would have been, but it was conversation regardless.

But somehow, something snapped this year. I found myself more and more aware of how everything wasn't as "blue sky, flowers, and butterflies" as I had hoped. Ever since I got my hearing aid this year, my hearing aid has basically been inseparable from my ear. I have even gotten scratches and mini-rashes in my ear from wearing it so long, but haven't minded. It's a small price to pay for being able to hear cars, guitars, people talking, and even the toilet flushing!

Speaking of which, sometimes I pad to the bathroom at 2am, bleary-eyed, without my hearing aid. I flush the toilet. No sound comes. My brain doesn't trigger any mental alarm, but I do have a slight expectancy for sound to occur by now. So I feel a subtle unease at the silence.

It still seems to strange to me that sound is HAPPENING and I'm not hearing it. Sound waves are rising up and becoming lost in the nothingness. It's like that odd question, "Does a tree falling in the forest make a sound if nobody is around to hear it?" Does it? Of course it does- there's just nobody's ears around to swallow it up, to HEAR it, which is what gives sound MEANING and substance.

I don't want to miss any more of that sound. One of my mom's concerns was that I'd underestimate how much I could "take" the utter completeness of sound. She has heard of people who got implants and hated them because of how "LOUD" everything was. A lot of those people subsequently stopped using their implants. But to me, the thought seemed humorous, even foolish.

"Loud?" Yes, maybe it WILL drive me crazy at first but I am not going to give up after getting my skull drilled into, having a $70,000 operation after doing my research, and knowing just how much I WANT this.

Since I've been away at college, I don't think she's really gotten to see the total impact my hearing aid has on me. I really hope to show people that I AM committed to this. But ultimately, the only person I have to answer to is myself.

My failures are mine alone, and I am fully aware that while there are many amazing resources out there, that the vastness of the work that lies ahead of me is mine. It is ultimately down to my determination, my brain, my ear, and the computer that will lay nestled in my ear.

I think this is one of the MOST important things to keep in mind. We all know that it won't automatically work and that without continued lifetime work, it will not reach its fullest potential. But how exciting to know that we with cochlear implants have such a role in our own hearing.

Hopefully my brain doesn't reach some kind of threshold point in which it simply cannot "learn" anymore. This is my second BIGGEST fear, next to that it simply won't work better than a hearing aid!

We'll see. :)



*(Signing Exact English)
*(Pidgin sign, which is where you're still signing in English syntax but the rules are a bit looser and it all depends on who you're talking to. You can leave out some "little" words like "for" or "if" or "to" if you want to and still be understood.)