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“Embrace your inner distortion”

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A few months ago, I went to a conference about music and cochlear implants. It is still something that I have not completely processed, so I have been putting off writing about it. But fuck that, I’m just gonna tell you guys about it now.

First of all, it was pretty difficult to get there. I had to take a Greyhound bus to the city where it was, and there was a car accident in front of us so we were super-fucking late. Then I had to figure out the small town’s crappy public transportation in order to get to the hotel where the conference was held, and it took me about 10 minutes to figure out where the stop was etc. I waited for the bus a little longer, and it finally came. But then the bus broke down, so we all had to wait for like half an hour for a back-up bus to come. Then it rained, and I didn’t have an umbrella. And I hadn’t had dinner, so I was hungry.

Needless to say, by the time I got there, I was late and grumpy. But then, before I went into the conference room, a deaf guy came over to me and began chatting. He was really nice and put me in a better mood. I told him I’d talk to him later and went into the room.

I hadn’t missed much. Most of it consisted of a bunch of researchers telling Hearing parents how their children would perceive music with cochlear implants. The researchers talked about the joy that cochlear implants would bring into the lives of deaf children, and everyone in the room seemed to take it for granted that everyone loves music. They talked about scheduling ‘listening drills’ for children to ‘learn how to appreciate music’ – which, if you ask me, sounds like a really good way to make kids even more bored with music.

It was all very strange.

Then I noticed these two Hearing parents in front of me. They had a newborn baby, and I watched them out of the corner of my eye. Every now and then, they would glance at their newborn deaf baby with worried expressions and whisper to each other. It was pretty obvious that they thought of her hearing as a ‘problem’ to ‘fix.’

Just as I had made up my mind to leave, the kind deaf man that I had spoken to earlier got onstage. What? Curious, I stayed.

Turns out he was the keynote speaker! His name was Richard Reed, and he was a musician who had gone deaf later in life. Because he was late-deafened and hadn’t learned how to navigate society as a deaf person, I felt some sympathy for him. It was, in other words, easier for me to relate to his desire to get a cochlear implant.

He mostly talked about how much joy his cochlear implant had brought to him, but one segment of the lecture in particular caught my attention: He explained how he “embraced his inner distortion”.

Basically, he had spent his entire life relating to music in one way. He grew accustomed to processing it in this specific manner. But then, when he got his cochlear implant, the sensory input that his brain received was quite different from what he had heard before. It was like seeing the world through a maze of funhouse mirrors. So he had to re-learn how to piece together auditory data into a coherent picture.

I could relate to this point – after my cochlear implant was turned on, my brain had to take this brand-new sensory data and rearrange it into a meaningful picture. As time went on, bits and snatches of sounds slowly became coherent words.

Another thing that Richard discovered was that he couldn’t relate to old familiar songs in the same way that he had in the past. They literally sounded different to him. What’s more, they sounded distorted. That’s where embracing his inner distortion comes in: he had to accept this new soundscape and then find enjoyment in it.

It was incredibly fascinating. In the end, despite everything, I didn’t regret going to the conference. Seeing Richard Reed was more than worth it. It was amazing to hear about somebody else’s experiences with his personal music-appreciation evolution.

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Newly-diagnosed parents

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Every now and then, strangers on the street strike up a conversation with me because they’ve noticed that I have a cochlear implant. A good number are parents who are thinking about getting cochlear implants for their kids. Most of the conversations that I have with these parents take the same form: “I recently found out that my child was deaf, and I was thinking of getting him/her a cochlear implant. Can you tell me about your experiences?” To be completely honest, talking with the parents make me really uncomfortable.

My father coined a term, “newly-diagnosed parents,” to refer to hearing parents who know nothing about Deaf culture. They’ve suddenly been thrust into this alien situation and are afraid of the unknown. Because a large portion of deaf people – some estimate 90% – have hearing parents, this is a very common situation.

When newly-diagnosed parents hear about these gadgets that are widely hailed as a miracle bionic that turns deaf people into hearing people, they jump upon the chance to give their child a ‘normal’ life. We can talk to our kid! Our kid won’t be an outcast in school/society! Our kid will be able to get good grades, then get into a good school, then get a good job, all thanks to the cochlear implant!

But the thing is, the reality is a lot more complex than that. Cochlear implants do not turn deaf people into hearing people, period. They simply provide some auditory input – compared to what hearing people have, it’s a rough sketch of the auditory world. It’s up to the wearer’s mind to connect those sounds into something more meaningful. Even assuming that a kid is a candidate for a cochlear implant on a physical basis – for instance, kids with damage to their auditory nerve are not a candidate for a cochlear implant – there’s no telling if a kid will take to it or not. They may end up becoming a Deaf separatist anyway.1

What bothers me is the fact that newly diagnosed parents seem to think that they need their child to be “hearing” to be able to relate to their child. If I sit down and think about it, it’s actually pretty upsetting because it carries the implication that (A) deafness is inherently broken and (B) language is based upon speech.

Sometimes I wonder about the messages that kids who are implanted young receive. You are broken; we need to fix this aspect of you. You need a cochlear implant to talk to people, including your own parents.2 And so forth. Like I said, a cochlear implant does not turn a deaf kid into a hearing kid. If a kid is bombarded from an early age with messages that deafness is inherently bad, wouldn’t that lead to all sorts of psychological issues? In short, the well-meaning parents may be signing up their kids for therapy.

Personally, I’m grateful that I was given the choice to get my cochlear implant. My parents gave me the agency to choose to use this tool instead of sending the message, “You are broken; we need to fix you with an operation.” I see my cochlear implant as a tool that helps me to relate with hearing people. Nothing more than that. At the end of the day, I’m still deaf. Being deaf isn’t inherently disabling in and of itself; being deaf in a hearing world that refuses to accept deaf people is disabling. I think that this is an important distinction, one that a lot of hearing people don’t grasp. If a hearing parent doesn’t grasp the realities of being a minority in this world, where does that leave the kid?

So, the reason that I have a problem with newly diagnosed parents who strike up a conversation with me on the street is because a lot of them come from a place of desperation. They want a magical fix to their kid’s “problem.” It just is not that simple and, in the end, I have no idea how to convey the fact that the issue of getting a cochlear implant is a complicated one. The worst part is, I have no idea how the kid feels about all this.

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  1. Which, I want to be clear, is not necessarily a bad thing. But I doubt that hearing parents hope that their kid will become one. []
  2. Although my own parents know manual communication, they sometimes refuse to talk to me until I have put on my cochlear implant. I can’t describe how weird this is; another post for another day. []
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Simba

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I got a stuffed Simba for my fourth or fifth birthday, when I lived in a school district with a large d/Deaf population. I slept with him every night, but during the day, I was too busy playing with the other deaf kids on the playground to pay him any mind.

He accompanied me on our move West. Other than my younger sister, I didn’t know any other deaf kids in this new town. During the first day of school in the Rockies, my teacher led me into the classroom and said something. The entire class said something, then waved to me. Nobody signed or cued! I was immediately overcome with fear and walked out of the room.

So, alone in a world full of children who moved their mouths a lot, Simba became one of my most constant companions. Then, at some point, I discovered the mountains and trees. Thanks to the combination of toys, nature, my younger sister, and my translators, I gradually found footing in this strange new environment full of hearing kids. I became self-sufficient and adjusted to life as a solitaire.

Years after I came to think of myself as a mountain kid with a niche in his hearing school, my parents asked me if I would like a cochlear implant. I said yes. Needless to say, it changed my life. I slept through my birthday because of the sedatives, I couldn’t swim for the rest of the summer, and it hurt to put on a shirt for months.

Soon after I got my cochlear implant surgery, I found a round, flat magnet. I taped a piece of wire to it so that it looked like the electrodes that a surgeon threads through the cochlea. I then cut open Simba’s head and stuffed the magnet into his head. Next, I asked my mother to sew his head shut. She humored me and found thread that matched his color. From that point onwards, Simba was like me: he also had a cochlear implant! Somehow, it made me feel less alone.

Gradually, I forgot about Simba and I got used to my cochlear implant. But, even though it became easier to communicate with hearing people, I never quite felt as if I fit in Hearing culture. To this day, I consider hearing to be an “extra” sense that enables me to enjoy listening to music and helps me to get by in an audist world. When all is said and done, though, hearing is not strictly necessary. Growing up deaf helped me realize that, and I am extremely grateful for the fact that my parents didn’t implant me early.

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Alternative to Boring Listening Exercises

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When I talk about Deaf issues in this blog, I usually prefer to talk about cultural issues rather than the technology of my cochlear implant. Part of that is because I believe in the value of learning how to communicate without technology – it does cause me some concern to think that there are people out there who have cochlear implants but don’t know how to operate as a deaf person. What if their cochlear implant fails one day?

That being said, I have been wearing my cochlear implant more often these days, and I’ve been making more of an effort to understand people without visual cues. I can now sometimes respond to what people say even when my head is turned. I’m so used to visual cues that this feels extremely strange, like I’m doing witchcraft or something.

A man and a woman use an ouija board.

Oh my god, Patti! I can understand you even though I'm not looking at you!

First of all, I should explain that listening exercises are usually effin’ boring. When I was a kid, audiologists would lock me in their office and I’d have to do boring shit like repeating spondees or telling the audiologist whether they said eee, mmm, ooo, aaah, sss, or shhh. Within five minutes, I was usually thinking about getting out of the office to resume reading the really awesome book that I’d started that day. Immediately after I left the office, I would forget all about the stupid listening exercises in favor of reading all about Visser Three.

Therefore, I think that a large key to this recent success in using my cochlear implant is the fact that I’ve finally found an interesting “listening exercise,” per se: South Park.

Still from South Park: Cartman, Kyle, Stan, and Kenny stare at the camera.

The thing about South Park is that it is a very hearing-oriented show. I wouldn’t go as far as saying that I’d be incapable of enjoying it without my cochlear implant, but I have to admit that hearing things adds another layer of enjoyment. There are funny songs, the voice actors purposely talk funny, and it’s just plain funny to hear little children voices cursing on every other word. So, for that reason, I actually listen to South Park (with the assistance of subtitles, of course) rather than just tuning it out.

Interestingly enough, it’s helped me to understand a lot about the hearing world. If I have to figure out why this song is so funny, I listen to the song and look for cues in the rest of the joke. Then I conclude that this specific melody inherently sounds funny. That, in turn, helps me to understand how music conveys emotion. It’s also helped me with my speech perception. Since I’m so entertained by the fact that, for example, Mr. Mackey’s voice sounds hilarious, I end up listening to his words. In effect, I’m practicing my hearing skills, which in turn helps me to improve my speech discrimination without even realizing it.

I realize that not everybody enjoys South Park, though. If you are interested in improving your hearing skills and you don’t like South Park, I’d suggest finding something that you do enjoy and practicing your hearing that way. One thing that I’ve been learning is that, in general, if it feels more like fun than work, you’re a lot more likely to retain the skills that you acquire.

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Why I Dislike Holiday Music

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Closeup of Christmas ornament and music

Closeup of Christmas ornament and music

I have a pretty neutral opinion on holiday music as a genre. I don’t find it irritating or cheerful. I wouldn’t listen to it in private, but it sounds alright to me. I don’t mind sitting on my couch at home listening to my mom’s Christmas music CD.

No, the problem is simply that a lot of holiday music is at a perfect frequency to cancel out all other sounds, including speaking. Therefore, when holiday music is on, it’s all that I can hear. In the past, this has led to some pretty sucky situations because people play it in public pretty frequently.

One of the more notable incidents that occurred in the past was the time that I volunteered at a disabled seniors’ nursing home during Thanksgiving. We were in charge of things like handing out dishes, cleanup, and, if appropriate, feeding people. Everything was going okay – until they turned on the music. All of a sudden, I couldn’t hear anything that people said. So someone would ask me to get them more potatoes or something and I had to ask them to repeat themselves a million times. It was a pretty damn stressful situation for everybody involved.

More recently, I was trying to listen to my grandmother. She lives in a nursing home and speaks very softly because she’s too weak to speak loudly anymore. It was a difficult task under any circumstance, but I couldn’t do it when holiday music was playing.

So, yeah, I’ve ended up disliking holiday music. And, come to think of it, it’s mostly oldies holiday music. I have no idea why this frequency-canceling happens, to be honest. If one of you guys happen to be a music theory geek, I’d be interested in hearing your theories.

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How Battery Life Affects My Music Taste

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I’ve noticed that my cochlear implant’s battery life has a definite impact on my day-to-day life; furthermore, my music taste tends to fluctuate along with my battery life.

A blurry photograph that shows a large Jones soda bottle filled three-quarters of the way with batteries. Some are AA, but most are button-cell batteries. Miscellaneous objects, such as boxes of tea bags, are also visible.

Technically, the manufacturer recommends that I change my batteries every day – the idea here is that the battery can still power my implant, but the sound quality is lessened. In practice, I change my battery about every three to four days, depending on how much I’ve been using my cochlear implant.

If you consider the fact that a pack of 60 batteries costs approximately $40, combined with the fact that my cochlear implant uses three batteries at a time, I think you can begin to understand why I milk out my battery life for all it’s worth. Plus, it wastes fewer resources to do this. I only change my battery when it absolutely will not power my implant anymore or in a situation (like a job interview or a concert) where it is important that my hearing is the best it possibly can be.

When my batteries are on their last leg of life, I notice that I have to ask people to repeat themselves a lot more often. Sound becomes a little more… blurry, I guess. It’s difficult to distinguish them from one another, and I often can’t tell the background from the foreground. This is usually when I listen to music with really strong, distinct beat or songs that are already a chaotic blur of sound anyway. One example would be Science of Selling Yourself Short by Less Than Jake – the opening riffs are pretty clear, then it kind of disintegrates into a blur of sound.

In contrast, when I’ve just replaced my batteries, I feel more comfortable in most Hearing-world situations such as verbal conversation (even with background noise) and so forth. During this time, I listen to a lot more “challenging” songs, for lack of a better term. I’m talking about things like songs with lyrics that are really difficult to make out – I get inordinately proud of myself when, for example, I am able to make out the lyrics to Boot Stamping On a Human Face Forever by Bad Religion without looking them up first. I’m talking about songs where you really have to listen to the song to fully pick up on every single detail going on – I’m not sure what the term for that would be.

It’s just really interesting how subjective music can be for me. For example, I’ve talked in the past about how a reprogramming appointment changed my taste in music a little bit. Over time, I’ve come to take it on a quasi-philosophical level: it’s impossible to tell what exactly makes one person – even a Hearing one – respond to this song, while another one totally hates it. So, why is it any different for born-Deaf people who use cochlear implants? Just because our hearing is, on some level, artificial doesn’t mean that we can’t find personal meaning in music.

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Cochlear Implants and Music

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Last week, I went in to get my cochlear implant remapped. Brief tech-talk: a MAP is a cochlear implant’s program, and remapping basically means “reprograming it.” This website has really interesting info on it.

I’ve had my cochlear implant since 1998, so this is a regular part of my life. I hadn’t gotten it mapped in a while, though. They recommend that you do it three times a year or so, but I hadn’t done it in about two years for various reasons.

Well, it turned out to be a rather interesting audiology appointment.

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Diagram showing the anatomy of the inner ear.
[Visual description: A diagram shows the anatomy of the inner ear.]

A cochlear implant has a number of electrodes on a wire that is inserted into the cochlea. Since I have a nucleus 24, I have 24 electrodes. Each electrode corresponds to a range of frequencies. When remapping, the signal strength of each electrode needs to be tested. For every single electrode, you hear a different pitched beep. I personally find this to be a very annoying and tedious process.

During this particular remapping, my audiologist asked me to count off the number of beeps in the “threshold” range to see how loud it had to be. If I could accurately count them, it was loud enough to be at a “barely audible level.” If not, it had to be louder. Everything went smoothly for this part of the testing.

Problems began to arise when we tested the “comfort” levels. This entails listening to a loud beep and saying “louder” or “softer.” The idea is to reach a beep that is at a comfortable level of hearing. While my audiologist was running the tests, she noticed that it was making my right eye twitch. Really badly. So she switched my implant to normal hearing mode and began asking me if my eye had twitched before.
I said, “Yeah, it started doing that a few days ago. It’d happen when the phone rang and stuff.”
She said, “Let me clap my hands and see if that makes your eye twitch.”
And, indeed, my eye twitched in time to the clapping.

Well, apparently, the facial nerve and the auditory nerve are RIGHT NEXT to each other. My right eye was twitching; my cochlear implant is on my right ear. Facial twitching is a sign that the auditory nerve is being overstimulated. Some people have eye twitches, some have lip twitches, some have sideburn-area twitches. So she put me on a completely different map and I have a follow up appointment with her in late August. She has some concern because of the fact that it was a fairly rapid onset, but this kind of side effect is not unheard of. My eye hasn’t twitched since the reprogramming, but everything does sound different because it’s a completely different map.

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This is where music comes in.

When I went home, I turned on a song named End of a String by Glomag. (Youtube video here, or listen to it on last.fm.) This is a minimalist chiptune song. Before, I’d perceived the first eight seconds as this beautiful mid-range pitch blur of sound. I was surprised to discover that it has approximately eight fairly high pitched beeps – they aren’t totally distinct from each other, but they’re not a blur of sound either. And this was a higher pitch than I’d heard before. I then turned on some songs by viking metal band Tyr and discovered that, like Glomag, Tyr works in a higher range than I’d previously heard.

That was kind of cool, I won’t lie. What wasn’t so cool, however, was that everything sounded flat and boring and muffled. My mom’s voice, my favorite song, everything.

My audiologist had reminded me to be patient and let my brain get used to the new program. I knew that already. But it was kind of frustrating – I was left wondering if music would sound this way forever.

Well, I’m pleased to report that, as of today, music sounds awesome again. Yay! I don’t know what happened, but I’m pleased that I can listen to music again.

For me, the whole thing really drove home one fact: Cochlear implants can lead to a unique perception of the auditory world.

If you are interested in reading more, a man named Michael Chorost, once wrote a pretty interesting article in Wired magazine about his quest to find an optimal program to hear Ravel’s Bolero as he’d remembered it before he got his cochlear implant. Personally, I can’t relate to some parts of the article – I’m more concerned with “will this music sound awesome?” than “is this the optimal setting for perceiving music in a manner that is nearly what a hearing person hears?” I also take some issue with Chorost’s implication that deafness causes isolation – I wish that he’d said “I feel isolated by my deafness” rather than using Helen Keller as a device to imply a universal “truth” that deafness is isolating. Overall, though, it’s a pretty interesting overview of the more technological aspect of cochlear implants.

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