The Bionic Sound Project

this girl’s journey to sound

Do I have a “name twin” out there? Wednesday, September 27, 2006

Oy. Mandy took the liberty of calling AB this morning to find out what was up with the e-mail that I got last night regarding the CI.

Apparently, a Mrs. My-Last-Name called yesterday to place an order to replace a headpiece, because it was broken.

I am baffled as to why this is, because nothing’s broken with my CI. Nobody has made an order to AB regarding a broken headpiece. I haven’t called, and I know my mom definitely hasn’t.

But wait, it gets stranger still. I call a few hours later to follow up on Mandy’s phone call, because she didn’t know if one of us had placed an order and that I would need to follow up. Kevin, the guy I spoke with, informs me that there is no order in their computer system.

After several minutes of going over this, I was getting very frustrated with him telling me that there is no record of any kind in the system. It is impossible for there to be no record because I have the invoice and the FedEx tracking number. Finally, he tracks it down, and says that it’s not an order, but an exchange, and that it was called in by my audiologist. At that point I was so confused, and so was he.

So now I need to call Kathy, who was the one who placed the order, to find out who was calling, why it was sent to me, and what to do with it at this point. She’s busy all day today and tomorrow, so I left a message.

Meanwhile, my mom emails me to tell me that FedEx has delivered the package, and she wonders what to do with it, if she should send it to me here at school. So I guess we will have to wait.

Blast for it not being the new processor. That would have been awesome.

(Edit: I talked to Megan, and she said she called about a headpiece for another patient who has the same color as mine, and that AB accidentally sent her 2 for that patient. She also told me that my name is not on any of the return merchandise lists. Hopefully this will be cleared up soon.)

Anyway, this whole thing has me wondering if I have a “name twin” who also has a cochlear implant.

Moving on to positive news, I debuted my poem about the CI today at the Poetry Slam hosted by the faculty of the English department. I had my teacher read it for me, because it is hard for me to speak out loudly and clearly in a room full of people, and I wanted to be sure that they understood every word.

As I listened to my teacher read it out loud, it was amazing to hear another person’s voice read about the struggles with being deaf, with my poem. It was as if she was the author. I was trying to not cry, because I could identify with it (even though it was my poem). I saw some heads nodding in the room (population of 1,100 deaf students on campus, there’s no way you won’t have an interaction with a deaf student/be familiar with deafness), and the interpreter was trying not to get emotional as well.

When the event was over, Vic, one of my hearing classmates, came up to me, and told me that she really liked it. She mentioned that she shared it with one of her volleyball teammates who is deaf, and wanted her to tell me that she really really liked it. So that was just incredible for me, to hear that.

That’s for another day, after I have my class critique.

 

Now What Has Malfunctioned? (and Adventures in Sinusland) Tuesday, September 26, 2006

Part #: CI-5304-313

HR90K HP Beige Kevlar

Malfunctioning product must be returned to Advanced Bionics within 28 days of replacement product shipment or it will be invoiced.

I got this email from AB’s product team and my first thought was “WHAT? What’s malfunctioning now?” (and freaking out, because after the problem with the surgery, I figured that would be the only hiccup in the road, and it has been smooth sailing since.)

I was so confused, because I (or Mandy) haven’t talked to AB about any malfunctioning parts with my CI. I don’t know if Megan has done anything, but I’m sure she would have told one of us if she had been in contact with AB.

Needless to say, I was bewildered upon receipt of the email (and had almost marked it as spam mail, but something told me to read it). I tried to call and find out what was going on, but it’s past normal operating hours, so it will have to wait till tomorrow.

Because I have a burning desire to know instantaneously, I googled it and the closest part # I can get for that is the Auria headpiece. But there’s no mention of CI-5304-313 anywhere on the website, nor does it match with any of my other accessories.

Examining the invoice closer, I’m wondering if this “HP” is the acronym for the new Harmony Processor, which is the 120-channel processor. And with KEVLAR? Does this mean I’m going to have a bulletproof ear? (remember the mythbusters episode where they tested the stopping power bullets going through everyday objects like a deck of cards, a book, etc.?)

According to the speculation and rumors from professionals who are close to the Harmony processors, and from AB’s releases, it isn’t supposed to come out until at least November.

But if that is the case, AWESOME. And then I can pester Mandy until I get my CI to sound perfect with the music!

Unfortunately, it’s being shipped to my house instead of to me at school. Drat. *on pins and needles to find out*

Jen A. came with me to see the ear doc this afternoon (and is the first friend that has come along to anything related to the CI, so yay Jen!) Dr. D turned out to be the same doctor who said that “i think you will put on the implant and look back at digital hearing aids and wonder why you didn’t get it sooner”. It was great seeing again, as I’ve only met him once, and being able to say “look! here I am! I did it!”. I was amused because Mandy introduced me to him as “my prize student”.

Basically, Dr. D says instead of sinus problems, I could be having a problem with my jaw, leading to facial pain with swollen sinuses from allergies. Common medical thinking is facial pain+swollen sinuses = sinusitis, treated with antibiotics.

He also mentioned that my “off-balance/dizziness” can be a result of my jaw being asymmetrical (which was a problem when I had braces, and was supposed to be corrected). The dizziness just happens to be aggravated by the CI, and/or being sick, stressed, or not getting enough sleep. But overall, my scar and everything looks good.

*mind-boggle* I learn something new every day, which defies conventional thinking.

And today, we did a balloon-popping demo in class. I couldn’t hear it with the CI, but my hearing aid did.

 

Photos From The Film Shoot on September 15, 2006 Friday, September 22, 2006

Mandy’s been bugging me about posting the pictures from last week online, so here they are!

On September 11th, I was asked to be a part of a project that the school is working on. It wasn’t till September 14th, that I found out exactly what the film is about. It’s going to be a recruitment video that is going to be sent out to 2,500 people, about the school itself. One portion of the video discusses services for deaf students, and the part that we participated in was the services that they provide for Cochlear Implant recipients.

 

Mandy and I, before shooting starts

(more…)

 

How Will People See Me With The CI? And Interactions With Friends Wednesday, September 20, 2006

When I first returned to school, one of the major things I was wondering about with the CI was how much more noticable would it be/how would people see it as compared to the hearing aid.

The most common question I get is “didn’t you have a different color on yesterday?” I’ve been asked this by my boss, the interpreters, and a few classmates that haven’t been familiar with the CI/me. Matt W., one of my photo classmates, asked me this last night when I ran into him at Commons, and told me the rainbow one was his favorite. I thought I should put this in here, because it’s been an reoccuring theme, but never thought about it.

I feel much more confident in wearing the CI as compared to the HA, because I don’t have to worry about feedback or squealing noises. I was always afraid of being in a group of people, and not being told my HAs are giving me feedback and irritating people with the squealing noise, especially since I’m on my own now.

I’ve also worried about hugging people, and having the HA squeal in their ear, since it always makes me embarassed, especially if it’s an emotional moment (such as somebody crying), and it would be impolite for me to pull away. Instead of squealing, the magnet gets knocked off slightly, or gets attracted to their glasses frame (without coming off of my head), but it doesn’t bother them, and I like it better that way.

I remember my sophomore year of college, when Eileen, one of my all-time favorite teachers, kept looking at me during the lecture/critique, to try and tell me that I was getting feedback. She finally pulled me aside and quietly told me that without making a big deal in front of the whole class. If it hadn’t been for her, I would have driven the hearing people crazy, as I was in an all-deaf environment at the time (dorm, friends, activites, etc.) except for classes which were mainstreamed. And it turns out there was a crack in the tubing, causing the squealing.

I love how people react to feeling the magnet/implant under the skin. When I get asked questions, I sometimes offer to let them feel the bump on my head, so that they know what it is like. I usually take their hand, and guide it over the area, so they can feel the difference.

The reactions of people are so varied, from totally grossed out, to awe, and to deviousness such as finding other magnetic objects to stick to my head in the future. There are some who flat out refuse to touch it (or look at the incision area), like my stepmom, and my stepbro and I both like to call her a weenie, hehe.

Last night, while eating dinner out in the hall, my friends decided to try and do listening drills for me. It was really difficult, as the common dorm noises, and people talking/music playing, plus the acoustics, made it nearly impossible.

I’m glad my friends are enjoying this and wanting to help out, but the flip side of the coin is that I feel frustrated when I can’t get anything right or understand it.

I know that what I think I hear is really different from what is said. Sometimes it is really hilarious to them, but I can’t help but feel bad because I am trying.

The perfectionist in me feels like I’ve taken steps backwards. It says to me that I’m letting myself and other people down, because I’m not catching on quickly. But how I must remind myself that there are so many variables coming into play, that affect the dynamics of this listening situation, which really isn’t optimal for me, AT ALL. So I can’t beat myself up over not catching on.

Maybe I just need to lighten up and not be sensitive about it. After all, if you can’t beat them, you might as well as join them. Best thing is to laugh about it, instead of getting upset.

And to remind myself that they really do have my best interests at heart. It’s new to me, and it’s new to them as well. We’re all in this together. Maybe it’ll be better after some of them come with me to auditory therapy sessions with Mandy, and understand it better.

 

Initial Test Scores for Sound & Beyond Monday, September 18, 2006

There are moments where I miss the simplicity that hearing aids have when it comes to listening to sound in its wholeness, and hate the CI for not giving me that same access to sound. Then there are the rare moments where the intricacies of sound are revealed to me with the CI and revel in the amazement of it, and I fall in love all over again with the CI.

Listening with a CI is *NOT* a quick update or a quick fix to hear music or sound in its entirety. It takes lots of practice to get to that point.

The baseline test scores for S&B from Friday, 9/15
Consonant – 15%
Vowel – 35.42%
Food Words – 94%
Melody – 75%
Instrument – 61.1%
Animal Words – 98%

These scores help the program pinpoint where I should start and what I need to work on. Today, it assigned me to start with Level 2 for vowels, and Level 1 for consonants.

Unfortunately, this afternoon I was feeling frustrated and apathetic. While doing the consonant training, I had to determine which sound was the different one out of three, but had no idea what was being said. I can tell which one is different, more than 80% of the time, but it drives me crazy that I can’t UNDERSTAND what is being said.

It really bothers me that with some words, the only way I can differentiate is to compare how they “feel” and what kind of pulse is happening in my head. Sometimes I’ll hear a speech sound and then the rest of the word is a pulse. This is not what I expected sound to be like. But the point is that I have to train myself to listen to it and just got to keep working at it, and have PATIENCE.

I am also having problems with the sound dropping out, or gaps where there’s absolutely no sound (especially when its really noisy, it seems as if it’s overloaded the CI so no sound comes through), and Mandy realized that Megan had set the RF to manual. She changed it to PoEM, so now program 1 is with PoEM, and program 2 is same as program 1, but on manual. Program three is the same from last week, where we added gains in the high frequencies.

Today, I woke up at what I thought was 16 minutes before I had to leave for my class. I shot out of bed, and turns out it was only 7:17, but I still overslept by more than 45 minutes. I somehow changed the time on my clock instead of the alarm clock to get more sleep. As a result, I didn’t get to do my hair today, and it made it difficult in terms of wearing the CI (especially with wet hair).

In the book, AB suggests shaving around the part where the magnet is (which makes sense, but not necessary in my case as the hair’s already thin there) so the other option is wearing a headband.

I told Mandy it’s a good thing the 80s are back in fashion, because I would be in style with a headband. But first I need to get clothes that go with headbands! I love the 80s, especially the Hypercolor t-shirts!

But the one sentence I understood while waiting outside Mandy’s office, was her saying “thank you very much” as she hung up the phone.

 

Use Your Head Sunday, September 17, 2006

While at the lake today, I learned two very important things regarding the CI.

1. Don’t do a header with a soccer ball.
2. Running to catch a frisbee is difficult, especially if you dive for it.

The CI bounces around on the ear or falls off. I had to grab it (yay for awesome reflexes) before it hit the ground.

I need a way to get it to stay put when I’m running around, and still be able to hear. This is going to be important, because I am going to be playing in the IM Soccer league with PHouse, if we get approved. It will be difficult to run up and down the field with an all-hearing team, and only have one hearing aid, and not be able to hear them if they are calling to me.

Mandy called AB on Friday to ask them about replacing the magnet for the headpiece, by adding an extra or stronger magnet.

It’s difficult for me to wear the headpiece under my hair, cuz I tend to tuck my hair behind my ears a lot, and when I do, it knocks the headpiece off. I can’t put it on the outside of my hair because it is thick, and also fine, which makes it slippery.

The AB rep said to not put another magnet on (so I can wear it over my hair), because it would cause irritation and not provide a good “lock” (connection between the headpiece and the implant), and they don’t recommend that route. Instead, I should wear my hair up, cut it short, or shave a little spot where the headpiece goes.(!!!)

I really need to become more adept with styling my hair, and am at a loss of what to do with it right now. Even though I have the XX chromosome, I’m not one of those girls that played with makeup, hair, and clothes growing up. I was very much a tomboy, preferring to get dirty than to be girly.

Last week, I had to do speech testing with Karen to establish a baseline for improvement. The last time I had speech therapy was about 2 years ago. She gave me my results on Thursday, and discussed what I need to work on.

Results From Speech Testing 9/14

Fisher-Logemann Test (single words)
% Consonant Error = 24/67 (36%)
% Vowel Error = 0/16 (0%)
% Total Error = 24/83 (29%)

Clarke Sentences
98% = 4.7 Intelligibility Rating
(1 being lowest, 5 being highest)

Rainbow Passage
Sample of narrative speech reflected more errors than read speech, and errors were:

er (first), /s/ (mostly in the medial and final positions, and in blends)
st, nd, ns, ks
sh, ch

Words that contain nasal sounds also tend to sound too nasal. Carrying the nasality over to adjacent sounds.

Strengths
Overall very good intelligibility
Communicates ideas and opinions clearly
Excellent lipreading
Highly motivated
Highly intelligent

Skill Areas To Work On
Improve selected consonants and blends
Encourage better self-monitoring and self-correction at the conversational level
Practice a slower speaking rate
Monitor and encourage relaxed communication interactions.

The theory is that with the CI, it will be easier for speech because you can actually hear the speech sounds, and as you get more familiar with speech sounds, you will be able to incorporate them into your own speech, and correct yourself.

 

The Third Day Of School Wednesday, September 6, 2006

I really like my Poetry class because it is the perfect environment for listening practice. I can read along from the book, as we take turns to read the selection. They try to incorporate emotion and flow as they read the poem, which helps make it more animated and gives me a challenge, instead of a sanitized version of speech. My teacher also speaks very clearly, and the class is relatively small yet interactive, as opposed to my other classes.

I had to write a poem for homework, and I scrapped my first revision (of a poem I wrote last year but always wanted feedback on), as I realized it was based on the world of sound with my hearing aid. I was inspired by listening to music last night with the CI and trying to come up with more imagery. I now have a whole new world of sound accessible to me, available for inspiration, because it is my new world that I am busily exploring.

Music is the insistent whoomp of the bass, as it sets the pace
Music is the mournful wail of the sax, not wanting to be left back
Music is the staccato raps of the snare, living without a care
Music is the pluck of the guitar, reminding us it’s still the star
Music is the tandem of the ivory keys, which just wants to please

I also started my first day back with my old job, working with Sheila. Part of my job entails running between the two offices. When I went in, it was sunny, and 10 minutes later, the skies opened up and literally poured. It was the first time I have been caught in the rain with the CI. It is also the first time that I have gone for a run, which was difficult, because the CI bounces everywhere and I don’t want it to fall off my ear. I’m still battling the recent unsteadiness/dizziness, which did not help me achieve the goal of getting from point A to B, without being drenched.

Didn’t have a lot to do at work, so I did some schoolwork, and I could hear the ticking of the clock on the wall as it slowly counted down the minutes, and it was maddening, listening to the constant “tick, tick, tick”, repeatedly punctuating the silence.

It made me feel like it was a scene from episode “all things” (The X-Files), or one of those other movies, where time slows down, but you still hear/see the pace of time, the throbbing heartbeat as it pulses forward.

Finally, my classmate, who also has a CI, found a way to share some CI love with me, which involves knocking the magnet off my head when I least expect it. She said she had been waiting for that opportunity ever since I got the CI. *rolls eyes*

I also saw a former teacher of mine from my sophomore year, who got a CI within the last year to two. I was always impressed with her for being a teacher in a classroom full of hearing students, able to maintain order and keep a tight ship, not taking any misbehavior from the students, commanding respect in the classroom, and still be “hearing” enough to interact with the hearing world, as compared to me. If it was me, I would have been scared to do that, unsure of being able to hear everything that was going on and understanding everything, without an interpreter.

She struck me as being hard-of-hearing (I’m not sure what her hearing background is), but she has always been a model of what I would like to achieve with my own hearing loss/be like in the workplace. I was really surprised when she got the CI, and knowing how well she (seemed) to do with the hearing that she had, and the fact that she took that leap to do so, almost seemed to tell me that it would be okay if I got it too.