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.

 

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.

 

oh the voices on the radio Monday, June 25, 2007

(listening to walkie chatter)
Me:
J, that sounds like S talking on the walkie.
J: It is.

I’m starting to recognize more voices at work. It’s scary, since vocal recognition is NOT and never has been a skill that I have. Yet, I’ve successfully learned to identify my TL’s voice, and now I’m picking up on learning other voices throughout the store. I wish I could understand what they are saying, not who is speaking. But first things first.

Good news, I found out we’re getting new walkies in August probably. And they come with 3.5mm headphone jacks, so I can use my own DirectConnect cable with the walkie. Or I could use my own FreedomLink. I’d have to get one that is monaural, because if I was walking around with a stereo headset, I think I’d make people mad because it would look like I’m listening to “music”.

 

More Walkie-Talkie Stuff Thursday, June 21, 2007

I’ve been using the walkie-talkie the last few shifts without the headset. It works much better, as I can hear it, and doesn’t sound garbled/drowned out. I asked my TL if she knew if there was a special attachment that might work with the CI. I’d have to go ask our HR person.

It’s kinda hard having the walkie-talkie up all the way, because everybody can hear it, and I don’t want to blast the eardrums out of our guests or my coworkers, but when it gets really noisy, it’s needed.

Today, I was listening to the conversations that my coworkers were having, and using it for listening practice. I can understand numbers, and depending on who’s speaking, their location in the store or who they are looking for. I can also understand “thank you”, “you’re welcome”, and “what’s your location?”.

At this point, I’m not really ready to rely on a walkie-talkie (much less a cell phone!), but I’d like to spare others the loudness of my own walkie-talkie.

For example, today I had a guest come up to me while I was doing my research to point out that I wasn’t listening to the walkie.

Guest: “I’ve got a health card here” (proceeds to open her purse and show me)
Me: Okay. (very confused as it was totally random)
Guest: That’s what they were talking about on the radio.
Me: Oh okay. Thanks.
Guest: Weren’t you listening? (looking at me like i’m a bad employee)
Me: No. (still very confused)
Guest: Hmmph. (walks off)

I was aware that they were talking via the walkie, but I wasn’t trying to decipher what they were saying, as I was busy with my research, and it was a very long conversation. If it was super important, somebody would come and tell me.

The only thing that I have to say about this is that my CI and hearing aids aren’t that visible (a good thing and a bad thing). However, I probably should have explained that I was deaf, but I didn’t want to get into it then, because it was just an awkward situation, and totally random. I haven’t had a random complete stranger point out my deafness, whether indirectly or directly, in a very long time.

The other thing that bothers me about not having the full ability to understand what’s going on, is that I often feel like I’m missing out on the “daily life” of the store. My coworkers tell me that I’m not missing much, and that I’m actually lucky that I don’t have to listen to it all day. Go figure.

Happy first day of summer!

 

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!

 

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.

 

Breaking News (Online Live Video) Monday, April 16, 2007

Filed under: accessibility,media — Allison @ 1:58 pm

Nothing like breaking news (the Virginia Tech shootings) to force you to try to use your hearing to understand what’s going on.

Live online broadcasts that aren’t captioned (since I’m stuck in the ESP lab working on photo stuff, and everybody’s talking about it over here) plus I’m getting bombarded by IMs from my friends about what’s going on.

Brian Williams (of NBC News) has an excellent voice for listening…I can understand about 60% (conservative guess) of what is being said, without any lipreading.

However, it would be nice if there was still closed captioning.

One of the worst things about being deaf is that if there’s something going on, you’re usually one of the last people to know about it. 9/11 was a perfect example of mass chaos and no information of what was happening, other than the pictures.

My thoughts are with the people who have been most affected by this tragedy. It’s sickening to just hear about it.

 

More News From Friday Sunday, April 15, 2007

Filed under: accessibility,listening therapy,mandy,observations,work — Allison @ 8:57 pm

Friday morning’s therapy session consisted of me doing better than anticipated on every activity Mandy had planned, that we ended up finishing early.

She picked a selection from Alphacats (rhyming alternatives), consisting of the “S P D T” sounds. I breezed through them with the CI and the HA on, getting 100% on discerning the differences, and understanding what was being said/what letter it was (for the most part). In a moment of curiosity, I tried it with just my hearing aid, and did not do as well (about 4 wrong). The interesting thing was that it took me longer to figure out if it was the same or not and guessing what the word was.

After that, my super-cool boss, Sheila, asked me if I could cover a shift Friday afternoon, and since I didn’t have a research team meeting, I went over to the office early. While talking with her over lunch, her sister called on videophone from Hawaii.

I’ve done videoconferencing (when the technology was still relatively new) and only with people who sign (my big sister Krista, my ex Mike). But we usually would type back and forth on AIM because the video was too jerky to capture clear motion, and my signing skills were not up to par. If it was a hearing person, we would just watch each other for reactions while typing back and forth. It made for a much more interactive conversation.

I had a lot of fun talking with the two of them, and it was interesting to note how much better it was to hear with the CI than with the HA, because it helped with hearing sounds.

Now I wonder if I can get my family into videoconferencing, instead of having to use the relay. That would be awesome.

 

The Obstacles Of Having Hearing Friends And Family That Love The Movies Friday, January 26, 2007

Thursday night, MK and I went to see the simultaneous ASL-Voice play at school titled Obstacles. It was a great play, really emphasized the obstacles that deaf people face in a hearing world. I haven’t been to one of those plays in a long time, but only because back then I couldn’t understand what was going on, due to being a new ASL learner. I’ll discuss the play next time, and the obstacles it talked about.

Tonight I realized that I had my own obstacles. My hearing friends. Ok, maybe not them, per se, but the things they choose to do. They want to go to the $2.00 movies tonight, and invited me to come along. But they forgot that I needed open-captioning (OC).

So, I told them that it wasn’t OC, and that they could go ahead and go without me.

I really didn’t feel like
a) going outside when the temperature currently “feels like -2” according to the weather report
b) sitting through a movie, missing the dialogue, but knowing what happens visually. It ruins the movie for you when you actually see it with captions because you already know what happens.
c) watching a movie when I would rather watch it in the convenience of my own apartment, without missing anything if I have to go to the bathroom. I also have a particularly bad habit of falling asleep during movies.

Anyway, it’s fine with me, as I’m used to not going to the movies with everybody else. A few years ago, I told my family to go ahead and go without me, when one of nieces/nephews wanted to go to the movies for their birthday, but it wasn’t OC and it was about $15. So I went home to my mom and did other stuff.

The last time I went to a non-OC movie was Harry Potter and The Goblet of Fire. I only did that because I had never been to a midnight opening of a movie, and wanted to experience it. Secondly, HP4 was my favorite book in the series (of 1-6, when’s #7 coming out?) so it would be easy to follow along, because I already knew what happened in the book. I don’t even remember what was the last non-OC move that I saw.

My friends discussed about the possibility of coming over to watch a movie, since we’re all going out to do errands in the morning together. I didn’t hear back from them until they were already at the theater. Apparently, they lost track of time, and had to leave immediately, and weren’t able to tell me what the plan was until after they got there.

Growing up, I was forced to go to the movies like every week with the other kids at my babysitter’s house. The only thing I liked about it was that I got to have all kinds of special treats at the movie, and it was nice and cool inside. It was a great relief in those days, as the summertime temperatures were ~115, and we spent the entire day in the pool, swimming and being toasted to a golden crisp by the Arizona sun, even with sunblock on.

I do remember being traumatized by movies or television that I watched as a little kid. I got so upset seeing “Don’t Tell Mom The Babysitter’s Dead” only because I didn’t understand the dialogue, and the grandma looked like/reminded me of my own grandma, who I was especially close to. There were times I would be scared, such as in Silence Of The Lambs, The Black Hole, The Neverending Story (it’s one of my favorites, now that I understand what’s going on), and Speed (ok, that one was Dad’s fault, as Mom expressly told him that I was not allowed to watch it because I was too young. I was up all night, too scared to go to sleep, and so were they).

But that’s the way it was growing up. I hated it. I was so glad when the ADA was finally passed and captioning was mandatory. For the first time in my life, I was able to participate in watching stuff with my peers and family. No longer was relegated to sitting in the corner of the room, my nose buried in a book, or making up my own storylines to match what was going onscreen.

The benefit to that is that I became exceptionally well-read and extremely creative with the stories I would come up with. And then captioning came, and I learned to read fast, devouring information quickly.

I don’t want to keep my friends and family from going to the movies, which they enjoy doing and makes them happy. My mom and Stef both said it would be great if I can understand movies with the CI, so I can go with them. I don’t know when that day will come, or if it ever will.

I want to be able to go to the movies when my family and friends want to go, without having to check and see if it’s captioned. The movie I want to see, Dreamgirls, isn’t even available in my area, OC.

But where do I draw the line between going along with being a part of a group, doing something that I really don’t want to do versus being all alone, doing something else that makes me happy? It’s a conundrum.