The Bionic Sound Project

this girl’s journey to sound

Fun In The Rain Tuesday, September 11, 2007

Filed under: deaf community — Allison @ 11:32 pm

Nothing like getting caught in the rain (and being prepared with an umbrella), only to have a gust of wind send the pole of the umbrella to the side of my head, knocking the magnet out of place.

And then the magnet is stuck to the umbrella pole, while I try, in vain, to get the magnet unstuck, and stay dry at the same time.

The next thing I know, the umbrella is inside out, my cochlear implant is attached to the pole, and lightning is flashing brightly, rendering me momentarily blind.

Fun times. The CI made it home safe and dry. On the other hand, I was soaking wet.

This morning, I, in all of my brilliancy, left the house without my CI. I had put it next to my keys because that’s the last thing that goes on (besides my shoes).

For some reason, I thought I had it on, but I didn’t. Then my hearing aid battery died halfway through my shift at work. It was not a fun morning. Until the battery died, it really drove home how much I depend on being bilateral, and rely on the CI now as compared to the hearing aid (but with a weak battery…).

As I write this, 9/11 As It Happened is playing on the TV. It’s the footage from the morning of 9/11, with Matt Lauer and Katie Couric. I remember this footage like I saw it yesterday. I haven’t forgotten how I felt, or where I was when I saw the first images. There wasn’t captioning during many parts, leaving us in the dark.

Here it is, 6 years later, replaying as if it was happening again. I’m tempted to put my CI on and listen for the tones in their voices, for the details that I missed the first time, when it was live. But I don’t want to. I’ve already lived that day once. I don’t want to live it again. And there are so many people out there who live it every day of their life, probably until they die.

My point is…imagine hearing history. Five years ago, I did a presentation on Thomas Edison. Part of my presentation included an audio clip/movie of him with the first phonograph recording ever made, “Mary Had A Little Lamb”, complete with all the imperfections.

Then there was the episode of the X-Files where they talked about the pottery made during the time of Jesus Christ, and the nearby potters recorded the teachings of Christ into the bowl via the straw (archaeoacoustics, which was later debunked on Mythbusters).

So I ask…what would it be worth to hear history? It’s one thing to see it, but to actually HEAR it happen. Would it be different for you?

In happier news, I get to see Mandy for the first time since May 26!

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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.

 

Rockin’ The Holidays Party Pictures Friday, January 12, 2007

December 15, 2006, we had our Rockin’ The Holidays party for all cochlear implant users, friends, faculty, and staff at school. It was a great success as 35 people showed up between 2 and 5 pm.

We played Guess Who This Person Is, Pin The Magnet On The CI, Musical Chairs, Red Light/Green Light in chairs, decorated cookies, listened to music, and general conversation.

Here are a select few pictures from the party. The rest are on photobucket.com. Contact me for access to the folder to see the pictures and/or download them to your own computer.

(more…)

 

So Much To Do, So Little Time! Tuesday, December 12, 2006

Instead of therapy today, I spent time shooting Mandy for my photo project. Assignment: A Day In The Life Of… Many thanks to Mandy and everybody else for being a good sport today.

Mandy and I did take a look at the FM system, which was neat, but didn’t work with the CI for reasons unknown. The only thing I don’t like about it is that it feels like it’s very protruding and weird. It also uses the same kind of attachments that is used for the iPOD so I am not thrilled about that, because the door cover for the hearing aid is a design flaw (in my opinion). But it was great hearing the voice through the HA without all the background interference. We will have to fix it next week, because there are no more sessions this week because she’s off to GRADUATE! YAAAAAY! 🙂

This morning I met with my advisor, the chair of the photo school, and the new chair for the program that I want to be within the photo school, and conversation turned towards the cochlear implant and how I was doing with it. I notice that more baby boomers who currently have a hearing loss are asking me about it because they see me with it, and it’s interesting seeing the cultural shift and the interest change from not doing anything about it, to getting hearing aids, to exploring the possibility of a cochlear implant.

Catherine and I also did more CI Holiday Party prep, and one game we came up with today was “Put The CI On The Ear”, instead of pin the tail on the donkey. So there will be a processor to pin on, and an implant to pin on as well. So much to do, so little time, but I’m having fun.

Sound List
12/09 – listening to the space shuttle Discovery launch live on TV!
12/11 – Hearing the scrape of the knife on my bagel this morning in the cafeteria (which echoes and usually is noisy)
12/11 – while having dinner at the commons, a very noisy environment, and distinctly hearing the clink of dishes in the kitchen and people dropping things.

1:48 am, that’s enough for tonight! Next time, the theory on adjustment and helicopters.

 

Snow, More Mix-Ups, and Incoming Freshmen Saturday, December 9, 2006

Woke up to snow this morning…had about 3 inches on the ground, but by the time I got outside, it had been plowed, so I didn’t get to experiment with the sounds. Basically it sounds the same, but there’s more of a musical “squelch” as your boots press down on the packed snow.

Yesterday, I mentioned that when I had the hearing aids, I didn’t like the sound and feel of snow squishing on asphalt/concrete, nor did I like walking on it. It still holds true. What I can’t figure out is how much of it do I hear versus how much of it do I “feel”? It was too noisy outside with all the environmental noises plus my boots didn’t help.

While waiting for my lunch today, I had the realization that I was hearing more with the CI than with the HA. Maybe I need to change the battery. Maybe I’m just becoming more dependent on the CI for listening. Either way, it’s neat to see the dependence change from hearing aid to cochlear implant.

AB sent us a bill for $175.00 for the headpiece. This goes back to the screw-up that was supposed to be taken care of on September 29th. *sigh* We sent it back, per the instructions we got over the phone, and it’s still an issue.

I’ve been having rushing noises in my ear since I got home and laid down to rest on the futon. It only happens when I move from side to side, and feels/sounds like the tide coming in, growing louder and louder till it crashes against the shore. It’s a bit uncomfortable, but I’m used to it since I lived with it for one month after surgery. Just weird to have it back after not having it for awhile.

We had an open house today at school, and all the Special Interest Houses were there to meet with prospective freshmen and give tours of our floors. At one point, a tour group of deaf kids and their parents came in, and I was looking to see how many had cochlear implants (about 75% of the group, mostly Nucleus, which is about right, considering the ratio between CI companies here on campus).

I was at the table for Photo House, and out of all of them, ours was the only one that had a deaf person at it (me). It was nice being able to talk to the prospective students and sign with them, whereas the other houses didn’t. It’d be nice to have a bigger mix, but the world doesn’t work that way. There’s still a cultural divide between the deaf and hearing worlds, but it’s getting better here. Much better than when I first set foot on campus several years ago. As for our house, I’m the only deaf member, and there is one that is hard-of-hearing but doesn’t sign.

Several members are learning sign through the ASL class, which is pretty cool, and I’m proud of them for doing that. However, I feel conflicted between being me, which is speaking versus signing to them to help them learn. The reason is because I’m not good at signing and speaking at the same time, because my hands can’t keep up with my mouth and brain! That, and I find it odd to sign to a person who can understand me when I’m speaking and doesn’t know sign!

 

The Airport Announcements Sunday, December 3, 2006

Saturday, I flew back to school. I had a nearly 2.5 hour layover in Cleveland, Ohio. While waiting at the gate, I was approached by a deaf young man, John T., who also goes to school with me. Felt like I had seen him before, but we found out we had some mutual friends in common, and figured that’s how we probably met. Gotta love the deaf community.

Anyway, the gate I was at, had multiple planes at it (the kind where you have to walk down the stairs and out onto the tarmac). This lead to staggered boarding, as they were boarding the multiple cities at different times.

What I was so excited about was while I was engaged in a conversation in sign, I heard them saying word-for-word over the PA, “we are now boarding for Rochester, New York” and I said to my new friend, “that’s us!”

It was so weird to be able to be engaged in conversation in a noisy airport, and hear the announcement word for word in the background. And at the same time, absolutely THRILLING to be able to understand it with the cochlear implant.

Flying was much better this time around, but my ear still doesn’t like the pressure on it. But I didn’t feel dizzy/off-balance after getting off the plane, and going through the security pat-down was quick, compared to last time I flew out of Phoenix.

I forgot to mention in yesterday’s entry that Megan has been listening to Christina Aguilera way more than I have, and every time she hears her music, she thinks of me. I infect people with the Christina goodness!

My focus since I’ve been activated was to listen to a diversity of music, mostly my favorite songs, to retrain my brain to associate that pulse with that sound. Now that I’ve trained my ears with different music and it is starting to sound natural, I may start listening to Christina’s new stuff more.

I think I didn’t want to corrupt her beautiful voice with the CI until I could get a sense of normalcy with music.

Megan also said that music will be so much better with the Harmony, and both she and Dr. M can’t wait to see what I think of it as compared to the Auria, since I’m a music fanatic.

I also learned that I have to wait for a letter from Advanced Bionics, that will explain about how to get the Harmony, then I have to call and order it, then bring it in to program it. Just a month to two months to go!

A lot of people are getting implanted in January, because they want to get two Harmony processors. I’m glad I got implanted when I did, because I want to enjoy the Harmony when it’s turned on, now that I’m doing reasonably well with the Auria.

Ok, 6:35 am, and I should go do something productive before heading out to the Toy Fair and sushi with my friends! A new sound adventure awaits, and this time it’s one of my favorite things…TOYS!

 

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.