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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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.

 

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.

 

Food For Thought – Writing About Sound Tuesday, December 12, 2006

Creative Writing class, my teacher gave us an assignment where we will take various approaches to writing about a specific place that we picked the first week of class. Today, she had us write about the sounds and smell of that place.

This place is a place I visited in the past before I got the CI. I haven’t been back since because I got sick of being a tour guide for various people, plus I had taken many many photographs there, and they were starting to blend in with the countless other photographs that people have taken. Today I realized that I hungered to go back and listen for the sounds with the CI, because the sounds you will hear, and the environment is unlike anywhere you will ever visit due to its uniqueness.

She had us read back some of the sounds we remembered, and it was amazing listening to my classmates describe the sounds they could hear, but didn’t put much thought to, because it’s all white noise to them.

Precluding this writing exercise was an assignment over the weekend where we had to observe people in a public place for 30 minutes, and “eavesdrop” on their conversations. The reports back from classmates about what people talk about in public was fascinating to me.

I’ve always wanted to know what hearing people talk about, and if it was just me that picked these noises, or if it was everybody else. I’m relieved to know that I hear the same topics as others, but I miss out on all the details that make up the meat of those conversations.

All in all, these last two writing exercises have given me a lot of food for thought in regards to sound. And these hearing classmates are thinking about sound in the way that I’ve been thinking about it since I got activated. Now they understand.

P.S. this place is an abandoned subway.

 

My First Day Back At Work Monday, November 20, 2006

Today was my first day back at work since May. I was supposed to work this summer, but due to complications with the cochlear implant surgery, I wasn’t able to return to work in time before school started again. It was also my first time back as a cashier in what seems like more than a year. Next week, I’m back on salesfloor, which makes me happy, since I am the kind of person who likes to keep moving on their feet, running all over the store.

I’m pooped, and I’m not sure which one is more tired, my body or my ears.

It was absolutely noisy, even with today’s start of the Holiday season and hours. I enjoyed hearing some of the noises, and the others I absolutely detested. Babies crying/children having tantrums was at the top of my list of sounds I hated hearing. It hurts. But it was interesting hearing the variation in the “cry”. I also heard how kids can reallllllly draw it out to exaggerate/emphasize their point and get everybody’s attention, especially when they start screeching. Shopping carts crashing together in the cart corral was second. Third was people dropping things that made a loud “boom!”.

I’m kind of not looking forward to Black Friday, because I know how insanely noisy it is, and today wasn’t that busy, but my implant/ear is already sore, and is quivering in fear at the expected noise level of Friday.

My Sounds Of Today

– hearing a guest say to me “have a nice day” when I wasn’t looking at them, and realizing that I heard every syllable distinctly! If it hadn’t been so busy, I probably would have hugged the guest, hehe. Just kidding

– while on break, hearing a coworker depositing the coins into the soda machine, making a rattling descent, then finally the coins dropping into the coin return slot. And this was 10 feet from where I was sitting.

– the detail of the printer/register tape when it prints/cuts the receipt.

– being able to locate the direction of the “boom” of things that customers dropped.

– the weirdest was this “littlest pet shop” or whatever it was called. It was a plush puppy dog that made dog noises. I was holding the box, and I heard this whining noise and couldn’t figure out where it was coming from, until the box started howling, and I was like…oy.

It reminded me of that “Oopsie-Daisie” doll that I had as a kid, that several adults absolutely hated, because the doll would crawl a few feet, “fall down”, start crying, then get up and start crawling again, only to repeat.

I don’t even want to get into the other dolls I had, especially the one you had to shake in order to hear the noises it made. But my favorite was “Cricket” and the one I called Pinkie Baby (brand name: Baby Talk). But I was definitely the queen of toys that made noise, and if they didn’t, I usually would find a way.

The start of my shift was interesting, as I got reacquainted with some of the people I used to work with 2.5 years ago, before I transferred to the store at school. Now I’m back to where I originally started.

It was the first time I had met my team lead, JD, and he knew I was deaf before I even told him. I asked him how he was able to figure that out, because I usually fool people, and he said he has experience working with people with disabilities, but that my speech was very good. He himself is a Little Person, so it is always nice to work with people who understand the challenges you have to face, even if our challenges are all different. Needless to say, working with him was absolutely amazing today, because I didn’t have to explain what I needed from him in terms of communication and assistance.

That’s the one thing I appreciate about both locations, we have a diverse workforce. Even if I sometimes have to challenge their expectations of what a deaf person can and cannot do, and get the opportunity to do the jobs that require some degree of “hearing” ability, it is still awesome.

 

It’s All About The Babies (And Hearing Loss) Saturday, November 4, 2006

Yesterday morning, I got my new replacement sidekick (yes, less than 2 months after receiving the brand new one, it was a major software glitch that caused it to crash constantly after we changed to Daylight Savings Time).

As soon as I powered it up, I got a message from Chris, a good friend of mine from my 1st year of college, who is also an ex-boyfriend of mine. He suprised me, as he and his wife are here in town for a wedding, and staying with another friend, Todd. The three of us were part of the same group of friends freshman year (Todd, Chris and I). They all wanted to get together for lunch, so we ate at the Commons, and I was surprised by the news that Chris and Pennie are 51/2 months pregnant, which is so exciting for them. It was so much fun reuniting with everyone, but I had to cut it short due to my listening therapy session with Mandy.

Mandy has decided that the activities in the book from AB is too easy for me, so she’s trying to make them more challenging for me. I’m having trouble with some words that I used to be able to get correctly before, are now sounding “off”. The Nucleus Hear We Go book, some of the activities are difficult because they deal with things that people in Australia would know about.

Next week, as it’s the last week of the quarter, she is going to do a sound test, to determine how much I am hearing now with the CI, as compared to when Megan did the test 1 week after activation. We are also going to go in and make a new MAP for the CI, and this time she thinks that we will be able to increase the threshold for sound for me, giving me access to a wider variety of soft and loud sounds at different frequencies. This may help in making sound being more “natural” for me, and on the same page as the HA.

A few hours after that, I met up with my friends again, to have a surprise birthday dinner for Chris at TGIFriday’s. I caught up with some other friends that were there. And then there was curiosity about the CI, as the interest in getting one is growing among deaf people. The funny part was that one of them used to work with my current audiologist, Mandy, when she got her CI 3 years ago. We were talking about her experience, and where she was at now with the CI. It’s always interesting for me to hear about other people’s progress and how the CI has or has not worked for them. I always feel bad for those who say the CI has not worked for them, or that they don’t like it for various reasons, and wish it wasn’t the case for them.

Afterwards, we headed back to Todd’s apartment, where we played a very fun game of Monopoly and chatted. At one point, there was a loud exclaimation/outburst from everybody, and the baby gave Pennie a good swift kick. It was the first time that the baby had kicked in response to a very loud sound, and she told us all that. That made me curious, because I don’t know that many deaf women who have been pregnant, as my peers are all starting to get married and/or starting families.

I called up my mom today and asked her if I ever gave her a good swift kick in response to loud noises when she was pregnant with me, and she said no. That was one of the first indicators that she had that there was something up with my hearing after I was born. The only time I did respond to noise and kick/fuss was when the Phoenix Suns were vying for the playoffs back in 1981-1982.

I just thought it was funny, as I’m a Phoenix Suns fan, all the way! Got the original license plate from the 1993 playoffs, with the old Suns logo, on my car.

But yeah, now I know that when I do get pregnant (in many many years down the road – don’t worry mom, dad, and linda, there aren’t any grandkids coming your way), that’s one of the things I’m going to be watching out for during pregnancy, is the response to environmental sounds.

It’s fascinating to me, as Pennie and I were both born deaf, with unknown reason for deafness. Chris was born hearing, lost it to sickness. Most people with a hearing loss, usually lose it due to being sick. In combination with that, considering the guys I have dated, I probably will marry a guy who was born hearing.

That’s one of the things I wonder about for the future, what’s going to happen when I do have kids. Will they be hearing or will they be deaf? Is my deafness genetic or just a random freak occurence?

I do remember the time a few months after my niece was born, my half-sister called my mom because she was worried that my niece might have a hearing loss. My niece wasn’t responding to sounds, and I remember being scared for my sister and for my niece, because it’s a hard road to travel, trying to raise a child with a hearing loss to survive in the hearing world, and that it would mean that there was a genetic component to my hearing loss, and that I would have to think about my own kids, when I did have them.

At the same time, there was a tiny part of me that was secretly happy (as much as I hate to admit it) at the prospect that there could be another family member with a hearing loss, because face it, it is lonely sometimes being the minority, and it is nice to have another person who is similar to you. I love my family very much, but there ARE times when I feel very left out (and sometimes have nothing to do with hearing loss, but rather being too old for the younger kids, but being too young for the adults). I’m happy to report that my niece is perfectly fine, with normal hearing, and so is my nephew, who came two years later.

No matter what happens, I’ll be prepared for it, after growing up deaf, and so will my family. Hearing or deaf, the kid will be special, period.

If my child is deaf, I’ll travel down that road when I get to it, in terms of what route I will pursue. Who knows what the technology and educational methods will be in 5 to 15 years? There’s many factors to consider, such as city that I live in, the services available, job situation (my mom quit hers to stay home and do therapy with me, while dad worked), finances, etc.

For now, I’m happily single, very independent, living my own life and enjoying it.

 

The Weekend’s Sound Adventures Sunday, October 29, 2006

Before the CI party on Friday, Mandy and I were both “blah” and had no motivation to do any therapy. So we did the A-Z word list, and I swear, whoever writes those lists comes up with the most RANDOM things that I have ever heard of, just to have a word for that letter.

Then it was time for the CI party, which you can read about here! After that, I went to Target with Jen C. While in the car, we were listening to the radio play, and I understood “twenty thousand” on the radio! We were wandering around the store, playing with the different toys that made noise, and I just had a blast, especially in the Halloween section.

When we left Target, it was so windy, that we were having a hard time walking outside. I looked up just in time to see a seagull fly right smack into a light pole. It fell straight to the ground, wings outstretched. The other seagulls came back to check on him, but he was already up and hopping around. He then started to do this run/hop so he could fly away, but without much luck. I felt so bad for it, and wanted to help it, but Jen said there wasn’t anything that we could do. So we left after making sure it was okay. (Yes, I have a bleeding heart for saving animals that are hurt or abandoned.)

I’m not sure if I heard the seagull before it hit the pole, or if I just happened to see it. It would be interesting to know if the CI alerted me to it or not.

Saturday, Kyle was willing to go with me to the Haunted House at the very last minute. We got there, and we waited in line to go in. I could hear the differences in the laughter, and was hearing several things that I couldn’t hear with the hearing aid. The clarity of the sound was what really struck me as opposed to the HA. As for my review of the Haunted House, it was a bit overpriced, but it was fun and they had some really creative rooms that I enjoyed (especially the first room with the couch, the execution room, the flying corpse in the graveyard, the car with the horn, and the dark tunnel with all the flashing lights, distorting your vision/sound). The rattling morgue doors is what scared me, because they made such a racket, and that’s one fear that I’ve had when exploring abandoned places/seeing pictures of abandoned places.

Anyway, I absolutely LOVE haunted houses ever since I used to go with my dad on the weekends to school, where the dads would build the Haunted House for the Elementary School’s Halloween Party. I would get to play with my classmates, while they were at work, and sometimes we got to help out.

After that, Kyle and I went to a fraternity party that I had been invited to. I had such a blast meeting and talking to all of these people from different schools in the area. The one thing I noticed was that some people started fingerspelling their names to me. I don’t know if it was obvious that I had a hearing loss, or if they just figured it out because it was so loud and noisy in there. Either way, it was cool, and I have some new friends.

But one of the best things that happened during the party, was that I was talking to people, and struggling to understand them because it was so noisy with the chatter and the music playing, and I suddenly recognized the song, and it was Crazy Town’s “Butterfly”. I was SO excited, because that is one of my top favorite songs, and to recognize it at a house party is awesome!

Today, I worked on the lab with Jen A., and while sitting in the kitchen, I heard this weird noise. It sounded musical, but kept coming and going. Jen told me it was the wind howling outside, to the point where it was whistling. It bugged me that I could hear it with the HA, but not really with the CI. What’s up with that?

Mandy says I should get an earmold for the CI, because it would help it to stay on my head. This would have come in handy while working on the lab, because the CI kept falling off my ear while I was laying on the floor, taking pictures. Finally, I just took it off, because I couldn’t hold the camera steady AND keep my CI on.