The Bionic Sound Project

this girl’s journey to sound

Advanced Bionics Neptune Processor Monday, June 4, 2012

With the announcement of the waterproof, swimmable Neptune sound processor, I am beyond excited about this. I have been waiting years for a hearing aid that was able to withstand water, and strong enough for my hearing loss (and still waiting). And now we have a cochlear implant processor that can do it? AMAZING.

I have been following the news around the Neptune, and while I am not sure if I will qualify for an upgrade, as I already have the Harmony. The Neptune is is definitely a huge step forward in Cochlear Implant technology.

However, after thinking about it for awhile, the ability to hear in all environments slightly scares me. I’ve gone my entire life without swimming with hearing aids on (other than that unfortunate incident at the babysitter’s when I was five). I vaguely remember the feeling of “WOW! I CAN HEAR”, as I climbed out of the pool and my hearing aids died their quick, waterlogged electrical death.

Throughout my life, as a water baby through and through, logging countless hours in the pool as a child growing up in the intense heat of a Phoenix summer, and as a competitive swimmer for one of the nation’s top high school girl’s swim teams, I’ve made it by without hearing. In high school, one of the highlights of my life was a five-day whitewater rafting trip down the San Juan river. There were people who signed, so I wasn’t alone, but I still spent time on the water in silence. All these years, and I’ve made it through my aquatic life, without hearing sound.

Now to think…what will it sound like to be swimming, and hearing the noise of the water as you are surrounded by others? Of playing Marco Polo, and being able to participate with the hearing children at daycare? Of hearing the bird calls while floating down the San Juan in a ducky boat? Of not being afraid of being thrown in the pool with my hearing aids on. Taking kayaking lessons and having the full experience of hearing the teacher’s instructions on how to do a roll to get one upright. Of floating outside today in my pool, in silence, enjoying the blue sky and sunshine shining down on me.

There are pros and cons to the Neptune for my personal use. To hear while wet is a foreign concept to me.

I think today’s kids who have this chance to fully participate in the life aquatic are extremely lucky. Thank you, Advanced Bionics, for creating this swimmable processor.

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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.

 

Forgot My Activation Anniversary Thursday, August 9, 2007

Gosh, I posted on August 7, but I totally forgot it was my one-year anniversary of my cochlear implant, as I pulled a ~11 hour shift for the second day in a row. Amazing how being super-busy at work will let things slip your mind, especially since I had been thinking all summer about how I wanted to mark my one-year anniversary with a small party as a way to say thanks to everybody.

Anyway, I’ve been hearing from several of you about your activation experiences (with activation dates of Aug. 6, 7 & 8). Each of you had a wonderful experience, albeit emotional, but that’s to be expected. Hearing about your experiences brings back memories of my activation day, as well as my feelings prior to activation. But re-reading all the entries makes me cry…especially the one about how I felt right after activation.

It’s amazing what sounds I’ve heard in one year. I could make a list of all the new sounds I’ve discovered in the last year, but that’s a project for another time, and I have to get up early to get one of my co-workers. But the CI has had a profound impact on my life, both through the experiences that I’ve been offered in the last year, both at school and work, and through people that I’ve met. And for that, I’m grateful to everybody and everything that has blessed me in this journey. I still have a long way to go, but the ride so far has been amazing.

Until you have been deaf, or are involved with the implantation process, most people will never understand the emotions behind being able to hear, and what a gift it is.

 

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.

 

July 16 and 19th…Harmony, Car Accidents, and Surgeries Monday, July 23, 2007

July 16th – two readers/their family members from this site had their surgeries! I hope they went well (I know one of them did!)

I finally got to order my harmony as well…but it’s going to take a 2-week turnaround to get it. At the rate Advanced Bionics is going with this, I won’t get it in the mail and activated till I return to school in September (which will make Mandy happy!)

July 19th – I hear a car accident for the first time with the cochlear implant. And from a block away. I was hanging out on the far side of the parking lot after work, talking to my boss as we usually do after every shift, when we hear this noise (which I didn’t know at first, but due to the expression on her face, I quickly figured it out). It sounded like a loud firecracker, due to the “boom!” that I heard. Pam says that the noise we first heard was probably the screech of the brakes, and then we looked up in time to hear the crash (she saw stuff flying through the air, I didn’t).

I was the first one to respond to the accident scene while Pam called 911 on her cell. It makes me sick that not one person who witnessed the accident stopped to help. The woman was bleeding, and her head hit the windshield, shattering it. To make the situation more interesting, the woman who hit her, left the scene and didn’t return till like 7 minutes later. I heard her car before I saw it, and was thinking “holy cow, somebody’s car really needs to go to the shop”. It was making clunking/chugging noises (half of the hood was smashed in).

I’ve never heard a car accident, not even with the hearing aid. I heard it distinctly with the cochlear implant, but my hearing aid did not pick it up at all. But Thursday was a really bad day overall (my friends/coworkers know why, and I thank everybody for their support and love).

Finally, I love meeting people with cochlear implants at work. It’s always fun to run into guests who have a cochlear implant, and then find out we have the same doctor. What I like more is hearing their stories about their implant experiences, especially if they’ve gone bilateral. 🙂

WE GET THE NEW WALKIES TOMORROW (TUESDAY) AT WORK! Must bring my various cables so I can plug it in directly into my cochlear implant and find out which one works the best…that’s going to be a fun experiment…I can’t wait! 😀 😀 😀 😀 😀

I finally uploaded a video clip of me playing the piano – “The Gypsy Baron” by Johann Strauss. I’m still working on finding my other audio clips of my piano playing…or rerecording them as a video, but I’m out of practice, my piano needs to be tuned, and the humidity makes one of the major keys stick.

 

Walkie-Talkie Log and The Harmony Monday, July 9, 2007

walkie-talkie log of things i can understand: numbers, locations (depending on who’s speaking, some names, basic phrases (the company sayings are starting to become etched in my hearing memory!), and voice identification (if i’m paying attention).

yeah, it’s good practice for me to listen to what’s being said, but the problem is, that I’m a lower priority than as compared to those who can actually hear and fully benefit from the use of the walkie. That’s the part I feel guilty about…because resources are limited. And when I’m out there, I don’t like to have it up all the way, because it’s too loud and it competes with the noise in the store. But it’s useful for me, because I don’t have to run all over to find somebody with a walkie, and can request or ask for help.

It would be nice if people were able to understand that I can (usually) have a conversation with them over the walkie, IF I initiate the conversation (I’m sure Mom and Mandy would beg to differ. :-p). Otherwise, trying to get ahold of me is not the best way. I’ve always preferred face-to-face communication instead, especially if directions are to be given.

That being said, I haven’t been practicing my listening as much as I should have, despite the fact that I’m back home in an all-hearing environment. Go figure.

Just a few more days and then I can order the Harmony. Then I have to set up an appointment with Megan to get it programmed, and catch Mandy so she can listen in via cell (she wants to do it so badly!)

 

Walkie Talkie Trouble Monday, June 18, 2007

The last time I posted, I mentioned how the sound quality was blah. It seems to be back to normal now. I wonder if my brain/nerves weren’t interpreting the signals from the implant correctly because I was overtired.

Anyway, Friday, I tried out the walkie with the headset that we have at work. I can barely hear it, even with it turned up all the way.

There also seems to be more static in it, than if I was to just listen to it without the headset. My comprehension is better without the headset, yet with the radio alone, the entire store can hear the walkies.

I wonder if there’s a special attachment that I can use for the walkie that will work with my cochlear implant. That’d be awesome, then I’d know what’s happening, and still have privacy.

At the same time, my teammates say I’m lucky that I don’t have to listen to the walkie. It makes me exempt from certain job duties, and I don’t have to listen to the general chatter that goes on throughout the day. I want to have the same responsibilities, but it’s very difficult for me to participate in some of those shared responsibilites, due to the spontaneous nature of the request.

But what bugs me about not hearing what’s going on, is that I miss out on all the little day-to-day things that make it interesting, and give each day it’s own flavor. Maybe people really don’t want to listen to what everybody else has to say, but I sure am curious.

The second part that bugs me is while in a middle of a conversation with my teammates, they’ll stop to listen to what’s happening over the walkie, but I don’t know that, and I keep talking. And then they go sorry, and ask me what I was saying. It’s frustrating. Same thing happens with my friends at school too when they have their cell phones or bluetooth headsets.

Having a walkie would also make it so much easier for me to get help if I needed it, or to track down certain people, instead of running all over the store.

I know at Christmas, they told me they wanted me to have a walkie on me, but I feel like why should I carry a walkie around, because I can’t hear on it, and there are other people who are more qualified or have a greater need to use the walkie.

I’m also nervous about picking up a walkie and asking for help, cuz what if they can’t understand me, or give me a message back, and I’m like “what” because I can’t understand them. It’d be worse if I was in front of a guest and unable to help them because I couldn’t understand what was being said!

Maybe I should try it again, or talk my boss about a way to deal with that, when I need to know her or my teammates’ locations.

I already rack up more than 5.2 miles a day per shift, just running around all over the store, and due to the physical nature of my job. I wouldn’t trade it for anything. I love it. 🙂 The team is awesome.

The other thing that I noticed, was that being back on the job for less than a week and a half, I was already recognizing my boss’s voice/footsteps/laugh before I see her. It’s kinda cool, because sometimes I’ll hear something, and think “gosh, that sounds like her”, and then she appears in sight. It’s amazing how the CI lets you capture the nuances of a person’s voice. Its not 100% perfect, but it’s pretty good compared to the hearing aids!