The Bionic Sound Project

this girl’s journey to sound

Heart-Stopping Moments Friday, April 3, 2009

Had my appointment with Catherine today.  And we came up with a plan of action.

  1. Borrow the battery from them, to see if it reduces the itching/redness, and if it’s my batteries that are causing the problem.
  2. If that doesn’t work, try out a body processor.

So that’s where we started.  We went into the CI booth, plugged me into the computer, with the intention of changing my MAPs because I cannot handle the intensity of the old MAPs after a year of inactivity.

So here I am, hooked up to the computer, watching the screen, and the first thing I see is red over the internal part.  Everything was recognized and green, except for the internal implant.  Checked it again, made sure everything was connected properly.  No luck.

It was time to call Advanced Bionics for troubleshooting.  Catherine found the “dummy” internal parts, and tried it with their processor.  Everything worked.

I held my breath.  This was not looking good.

We took my processor and attached it to to the dummy.  It worked.

I started to cry.

Crying because my internal processor wasn’t working.  Crying because at the thought of having to go through a third surgery in less than 3 years.  Crying because maybe that’s why my CI wasn’t working back in January.

Catherine picked it up to take it off, and then the computer recognized the internal part!  It was a loose wire.

Talk about a heart-stopping moment.  A huge sigh of relief.

So now I’m sent home with MAPs that are more than 100 points below where I was, and with my IDR reduced to 60 from 75.  One has Fidelity 120,and the other doesn’t.  I’m going to try both, as Mandy said in her last notes that I may do better without Fidelity 120.

30 minutes into wearing the CI, my ear was red and itching, and Catherine confirmed it by seeing that there was a red spot where the CI was.  So now it’s time to find a solution.

It’s amazing how quick the brain adapts to using a CI after not wearing it for so long.  I’m missing it…..and feel like I’m re-experiencing activation day all over again…in the sense that I’m discovering sounds that my hearing aid definitely did not pick up on.

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Frustrations With Being Deaf And At Work Wednesday, July 25, 2007

Mixed reaction to the new walkies we have at work. It works with my headphones (I haven’t tried the DirectConnect cable yet, but I know it will work). The issue is that I need a program that will work with it, and still hear ambient noise.

Switching back and forth between programs is a great way to drain out the battery, plus there’s an 8-second delay when switching programs. It should be better with the harmony due to the built in t-coil and extended battery life.

My frustration spilled over into the rest of the day, because once again, I was reminded how much I’m in-between worlds.

It’s so frustrating to be left out of conversation while working. Everybody’s yapping away, and I have no clue what’s going on, but I just keep on working. Or they’re laughing at something funny on the walkie, but of course I don’t know what was said. I go through the same situation with my friends, even my family (except my mom) and I just Get. Tired. Of. It.

I’m tired of being deaf, but functioning “like” a hearing person. Everybody forgets that as much as I blend in, I still don’t get everything. Sometimes I wonder if it would be easier to either be completely hearing or completely deaf. And sometimes I feel like I’m being taken for granted because I work so hard at not only making it easier for myself, but for other people as well. And I don’t get the same in return.

I know it’s unrealistic to expect the world to bend to meet my needs, or that the cochlear implant will magically solve all of my problems. I was aware of this when I was going through the screening process, and it’s not even been a full year since I’ve been activated. Gotta take it one step at a time.

But yeah, I was crying when I got home and talking to my mom about my day, because she’s really the only one here at home who gets how difficult it is for me, and how frustrated I get. It’s the stupidest thing to cry about, but I couldn’t help it. I tried to explain it to one of my co’s, but it’s still hard to put it in a way that people without the background can understand.

Had my back-to-school physical on Tuesday after work, and it was the first time I had to turn down a procedure due to the CI. My doctor wanted to do an MRI on my knee, because I’ve been having off-and-on problems for the last year or so, as a result from when I broke my ankle/cracked my leg/sprained my knee 2 years ago. That was weird, because it’s the first time that’s happened where I had to speak up and say “I can’t do that.” All I had was the vision from the episode of House where the metal shot out of the body and into the MRI, breaking it, except it was the side of my head.

 

On The Virtues Of Batteries Thursday, June 14, 2007

Today, at work, my battery for my hearing aid was starting to die. I wasn’t hearing my coworkers or the guests in the store very well, and had a few near-collisions today. But what sucks more is that it leaves me out of conversations (even though I can follow along SOMEWHAT by lipreading, but it’s MUCH harder), and guests who don’t know I have a hearing loss, get frustrated with me, and go off in search of somebody else. It’s not too bad when I’m with my team lead, or other coworkers that I’m familiar with, so that’s a relief, but still.

In regards to the battery issue, my hearing aid is frustrating because the battery doesn’t give me a warning that it’s about to die (I suppose I could keep a calendar, and change it on a regular interval, but that’s beside the point). My old hearing aid used to make a click-click-click sound to let me know that the battery was dying.

With the cochlear implant, there’s no warning. It just dies. It’s clear cut and dried. It doesn’t cling onto its last gasping breath, nor does it trick my ear into thinking it can hear, but faintly. I know it’s dead, because I can’t hear anything, nor do I feel the stimulation in my head. It’s weird describing the process of the battery dying, but it’s like everything grinds to a halt, with one last pulse shooting through your head.

I prefer the fact that that the CI doesn’t mince with a dead battery, like the hearing aid does.  When it’s dead, it’s dead, and I’m not running around struggling to hear.

In terms of sound, I’m having trouble with sounds lately with the CI. Music is starting to be icky, sounds are starting to be unfamiliar or rough. I don’t know if it’s time for a remapping, since I haven’t had one since….winter quarter? Usually, you get one at 3 months, 6 months, and then 1 year. But as Megan and Mandy can attest, I’m very particular with my MAPs, refining it to the last detail.

I can’t wait till I can put my order in for the Harmony trade-in. ONE MORE MONTH. (and at the same time, I don’t want it to be July, because it means the summer’s half over!)

And that means July 10, will be my 1-year anniversary of getting the cochlear implant. I cannot believe that almost a year has gone by.

 

Whispering In Class and Music On The Radio Wednesday, November 1, 2006

I know it’s bad to do it, not to mention the epitome of rudeness, but this morning was just one of those days. A class where everybody is immeasurably bored that you can’t resist talking to your neighbor, and that was what was going on today.

One thing I’ve never been able to do as a deaf person is to whisper. I either talk too loud in my attempt to “whisper” or I think I’m whispering, but I’m actually making no sound, and the other person can’t hear me, much less read my lips.

I was whispering with my classmate, Jen A., and to my amazement, she could understand what was saying, and I wasn’t being loud that others could hear me. But even better, my lipreading was enhanced by hearing what she was saying.

However, I still find it very difficult to be able to whisper and control your voice/make the sound in order to be understood without having an audience.

At work today, I was standing in the work area, just stretching my ankle because it was sore, and I could faintly hear music playing.

“Kathy, do you hear music playing?”

“I have the radio on, it’s really low though.”

“Are you serious? No way. I can hear that, it’s very quiet. But that is sooooooo cool.”

I was AMAZED because I was a good 15 feet away from the radio, and could hear it distinctly…I could tell the difference between the music and the voices, and I was just impressed as it’s only been 2 months, 3 weeks, and 4 days since activation.

In the middle of my delight at hearing this, Kathy asked me why I asked her that question, as I’ve been asking her and others at work off and on throughout the quarter about noises that I’ve been hearing, and she didn’t understand why I was doing that, as some of the questions struck her as being odd.

What she didn’t know was that all these sounds I that I have been hearing are new to me, and that I was a new implantee. She knew I could hear with the hearing aid, but not that the fact that these were new sounds for me.

It was a very good thing that I could hear the radio from where I was standing, because that is the equivalent of a “normal hearing” person.

I borrowed a different battery charger to determine if the short battery life of one of my batteries is an issue with the charger or with the battery. After yesterday’s dismal “run time”, it’s definitely the battery. So back to AB it will go, because a brand new 18 hour battery should not be lasting 12 or less hours.

I know that in the days right after activation, Susan told me that I needed to document my journey, because as time goes by, I’m going to look back and go WOW…look how far I’ve come in this short time that I’ve been activated. I see it each and every day and am thrilled.

I would not trade one day of this journey at all. I do not regret my decision at all, and happy that I got the CI when I did. The CI has been amazing so far, and I *LOVE* it. Thank you to everybody involved.

 

“It’s A Sound Good Thing” Thursday, September 14, 2006

I’ve been listening to music with the CI at home for the last few hours, as opposed to being hooked up to the iPOD. It’s so hard to describe music with the new map now, but basically my mind is just blown.

At 9:07 pm, I heard my first actual “s” in a song. I heard “Sugar baby” in Crazy Town’s “Butterfly”. I know that I can expect the “S” in my mind, but when you actually experience hearing it in a song (especially one that is considered nu-metal/rap-rock), it’s amazing!

I’ve written about listening to music since the day I’ve been activated. With each mapping session, sounds evolve and change over time, that I just get more amazed with each nuance and discovery that I make with the CI. It’s very interesting for me to analyze it, and what I am missing.

Right now, it sounds so much clearer (especially with the HA on at the same time), but I am getting so much more information in the CI ear that I can’t hear with the HA.

The reason I can tell the difference is because I actually can hear or “feel” the stimulation of the sound, whereas the same feeling/sound does not translate to the HA ear.

That’s one way I have learned to compare if sounds are the same, based on the “feel” in my ear (if I can’t understand it). For a person who may not understand or have the appreciation for sound, this may be difficult to understand. You can differentiate between sound, by its own distinct “feel”, and I am not sure how much of a role residual hearing plays in that.

This whole experience with music is kind of disturbing to me, because I consider myself to be a music fanatic. Right now my perception is being rocked to its very core and will continue to do so as I progress with the CI.

I finally heard some more on the 120 channel processor, and its official name is the Harmony. The difference between the Harmony and the Auria, other than the programming strategies, is that the Harmony will have a built-in T-Mic, and be a “power miser” to deal with the battery drain issues.

I excitedly anticipate seeing what it looks like. I cannot wait to stick it onto my head, and have even more fine control over music and the sound spectrum!

As for listening with the iPOD with the HA, I’m about ready to break the door that covers the electrodes off the HA. It is so difficult to plug in the audio boot because it requires a fine amount of dexterity and lots of patience. There’s this whole complicated process to putting it on, but it makes me prefer the audio boot of my old HA, which I could just snap on quickly. It’s frustrating, because the industrial design side of me, wants to take my training out and put it to use redesigning it! The design flaw makes it neither functional nor practical and is an annoyance when I’m moving about and it doesn’t stay put.

On Tuesday, Apple announced several new iPODs, one of which has a capacity of 80-gb! My wish has been answered! There’s something out there that will fit my entire music collection, which currently tops out at 42-gb. Yippie!

 

“You turned it up like WOAH!”

“You turned it up like WOAH!” – Mandy

I had my first mapping at school today. This morning, Mandy and I were joined by Catherine and Don (the other audiologists that I have worked with), who wanted to sit in on the mapping session. The majority of the CI students have Cochlear, and AB makes up about less than 1/4 of the population here (unconfirmed for 2006-2007), so we had to spend a bit of time getting re-familiar with the program.

The best part of the mapping session today…my brain is definitely ready to utilize the CI!

Mandy, Catherine, and Don were deciding how to best program me, based on my reports that I’ve been making over the last three weeks, and Megan’s reports/programs. The other part that they were curious about is why I had the lower frequencies turned up high, but not the upper frequencies. Speech clarity could be an issue because the upper frequencies were missing/not as strong as the lower frequencies, so they wanted to see what would happen with my brain, if we adjusted it.

So Mandy did speech bursts testing, which is the same as the “beep test” that Megan used to do, except it fired multiple electrodes at once. It was at this juncture that we realized that what I was hearing was soft to moderately soft. This explains why speech has started to sound more distorted over the last week, resulting in frustration for me.

I didn’t have to adjust the lower frequencies as much, but I really adjusted the upper frequencies, and I am pleased to report that speech is starting to sound AMAZING with the CI, in the few short hours that I’ve been programmed. It is also starting to balance out the hearing aid now, which is a great relief to me, because I was worried that I was going to have to go without the HA, because I should be listening with the CI, not the HA.

Don/Catherine both told me that one other person has mentioned the radio playing in their head. Apparently in the past, CIs used to have RF interference, but it shouldn’t be happening today with the newer models. And feeling like that I’m hearing in my non-implanted ear when I don’t wear my HA, has also happened to a few other people. So that’s some burning questions answered that I was very curious about! I was warned that these new programs may drain the battery even faster, so I need to continue with the battery log.

I hung out in the common area while they had their department meeting, because I had speech therapy 2 hours later, and tried to do homework, but was filling out paperwork instead. After their meeting, Mandy chatted with me while she ate her lunch. It was fun getting to talk about non-audiology related stuff. She’s so cool.

My exciting news from Monday…I was asked to be in a film that the school is making, and part of it has to do with Cochlear Implants and the shoot is tomorrow. Mandy just told me exactly what it’s going to be used for, and it wasn’t originally what we thought it was. Eeek. *nervous* We’re both talking about how we have to look extra-pretty tomorrow, because we are GIRLS who like to look good!

 

Listening Ability? How Does One Learn To Listen? Friday, August 25, 2006

It’s only been almost 3 weeks, and I’m already worried about the CI and my listening ability.

I wonder if I’m doing the right things to maximize my potential. Am I listening to the right stuff? Am I doing the right kinds of things to try and maximize my speech perception? All these types of questions and thoughts have been swirling around in my head.

I’ve been so used to doing therapy, therapy, therapy, and getting feedback from what I’m doing, that right now I feel like that what I do, on my own, isn’t helping. Everything I do has a visual component to it. It’s difficult to watch TV or read along with books, because I fall back on my “hearing aid” training, and use my vision more than using my brain to listen and understand what is being said. At the same time, I’m not getting the reinforcement of “yes, what I heard or thought I heard is indeed correct.”

On Monday, Susan said that I need to write for myself and not for others (where have I heard that before?). She wants me to write a daily log of my adventures in sound, and what I’m hearing, so that I can look back in 6 months and go “wow, that was a really rough time, but look where I am now and at what I’m hearing! YAY ME!”

I do well with the words in a list format, but have trouble with sentences. Mom did word lists with me, after I saw Megan earlier this week, and she started a new category of vegetables with me. However, I got it the hard way, instead of “mushroom”, “lettuce”, “tomato”, I was getting “portabella mushroom”, “bibb lettuce”, and “roma tomato”. That’s pretty much standard for our house, as we get different kinds of specific veggies for my guinea pig. However, I did get “jalapeno” right on the first try! She’s also been reading my favorite childhood book, “Cars, Trucks, And Things That Go” to me for listening practice. I love that book so much.

Today, I saw Megan for #6 and we tinkered around with the speech program some more. I have trouble with “C” and “M”, and hearing the first part of a word. I also told her about my concerns with listening. I know I don’t have patience (especially for somebody my age, as I was reminded by my dad on activation day!) and want more! She brought out the other computer that had the Sound and Beyond program that was made by Cochlear Americas. I got to play with it for awhile, and it was fantastic. I loved how if you get a word wrong, it repeats the correct word and the wrong word, so you can compare it.

This kind of program is right up my alley because it has a similar concept as the Touch&Tell that I had as a kid. What can I say, I love hands-on learning! It is awfully expensive, 290 dollars, but it might be an investment well worth making if it will help me, and I did enjoy using it…I could have played with it all day if I was allowed to.

I got 76% on the words when we played with the computer, she said I was doing pretty well for just under 3 weeks. The other cool thing this program does is that it plays music and then lets you pick which instrument produced that melody. I was able to get the piano and the xylophone right. But when it came to the violin, ughhhhhhhhh it sounded horrible! And I used to play the violin! But the piano sounded much better (after 10+ years of playing, I should have an ear for it).

Electrode #13 doesn’t have that special sound for me anymore. It’s so weird, because it sounded nothing like it did the last time. Megan did the beep test again today, and Electrode #6 sounded exactly like my mom’s old car alarm (park avenue) when it goes off. Now I have a way to describe what it sounds like to those who can’t hear what’s in my head!

T-Mic Hook: P1+2 – speech, P3 – 70/30 mix for DC.
DC Hook: P1+2 – iPOD only, P3 – 70 iPOD/30 environment.

I also have a battery log that Megan created so I can find out if I have a bad battery, a bad “charging slot” or if it’s just the program that is draining my battery fast on the CI. I do have powerful programs on my CI which draws a lot of power off the battery. My 18 hour battery is only lasting 12 hours, and I was totally unprepared for that the other day when the CI battery died on me.