The Bionic Sound Project

this girl’s journey to sound

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.

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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.

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My First Workout and Being Grossed Out Saturday, November 11, 2006

Wednesday, my sound discovery was hearing a classmate of mine cracking her thumbs about 8 feet away from me during critique.

That afternoon, I found out that I won’t be able to get the support services that I want for my major class next quarter. After much conversation, Anne and Sheila both recommended that I not do it, as I’m not ready to be independent with the CI. So I had to rearrange my winter quarter schedule. *grumbling*

It just further resolves my desire to work harder at it, but it doesn’t help when I’m not in the mood to work with Sound&Beyond. I went to lunch at the Commons, after picking up my replacement 18-hour battery from Mandy. Ran into MK there, and we talked about planning for the Holiday Party. Rockin’ The Holidays is probably going to be the name.

Friday was my 4-month anniversary of getting the CI. It was also supposed to be my last session with Mandy for the quarter, but it got canceled. It has been rescheduled it to Monday. We are going to do testing to see how much hearing I’ve gained in 3 months, and also check the T-levels.

Friday wasn’t a good day, as it seemed like everything happened at once, so I was in a bad mood that night, especially after my camera stopped working near the end of my final project photo shoot. My other friend Matt convinced me to go to the gym and work out to relieve my frustration. It was the first time I had worked out since getting the CI, and I went for a 35-minute 2-mile run. It felt SO good, especially when you cross over the plateau between pushing yourself, and feeling unstoppable…the second wind.

The real kicker came in after I headed downstairs to the pool to do some laps. It was the first time I’ve gone swimming underwater since surgery, so I was excited about starting that again. I miss swimming 2 to 4 miles a day, as I used to do that every day in high school, swimming for the nationally ranked #2 girls high school swim team. I wasn’t sure how doing flip turns would affect the CI, but I found out the hard way when I got out of the pool.

My ears hurt a little bit in the pool, but it was nothing compared to the disrupted sense of balance. I was having a hard time staying upright, and felt like I was falling over (to the left). The lifeguard was looking at me strangely, and I do have to admit I probably looked like I was drunk because I was using the wall for support while walking back to the play pool, and stopping every few feet.

I think I’m going to skip on doing flip turns for awhile.

After swimming for a few hours, we went to watch Final Destination 2, which I hadn’t seen yet. I was grossed out by the death scenes in the movie, but it was made worse by the detail of the SOUND in the movie, when I actually watched the death scenes. I could tell the difference because I dove under the blanket when it looked like something gory was going to happen, and I could hear it and felt sick to my stomach! Maybe I won’t wear the CI when watching these types of movies, because the detail of the sound is just more than I ever expected. Eeeeewww. P.S. Mandy, the first movie was the best, this one is just icky.

To make up for the ickiness (lol, I sound like Jen G.), I put in Looney Tunes, and we watched cartoons. I got such a kick out of hearing the sound effects, but didn’t stay awake long enough to fully experience the broad spectrum of noises! But that’s my new plan, to go back and watch some more Warner Brothers goodness, especially my Bugs Bunny!

 

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.

 

Deaf Culture and Attitudes (and upcoming CI events) Thursday, November 2, 2006

today was just…WOW, for lack of a better word. had a long talk with Mary Karol this morning, and I felt so much better after it. I’ve learned so much about deafness and deaf culture, and the differences between big D, small d, and small-d-that-became-big-D, and the beliefs within those groups. I’d expand on it, but it’s so complicated, and cannot be summarized here. But basically the attitude comes from small-d-who-become-big-D, that causes the division within the community, but I think it comes from all sides.

However, she did have a good point, where people like me, will have a hard time, because we can slip easily in and out of both worlds. My deaf-institute friends, those that are big-D, have said the same thing as well in conversations with me. Being able to talk and be understood by hearing people, playing by hearing-culture rules. And then I’m able to slip into the deaf world, and sign (not that well as in pure-ASL, but I am good at understanding, not expressing). But the issue is jealousy, because not everybody has that opportunity or those skills. It makes sense when you think about it. I definitely wouldn’t trade who I am and my communication style for anything.

We also checked out the room for the holiday party, and it was the first time I’ve been in the new SDC and I was blown away by it. It’s still under construction, but should be finished by next week. I’m excited because the students can help with the planning/prep of the party and other events throughout the year because it is our organization, so I am going to help out with that.

didn’t meet with mandy/do sound&beyond this morning, cuz of audiological training this morning. I did have speech with Karen today… that “th” sound is giving me trouble now.

FRIDAY, DECEMBER 15, 2-4:30 PM, SDC-1300 – BE THERE OR BE SQUARE.
open to both CI/non-CI, deaf/hoh/hearing students, faculty, staff, and friends

 

The CI Halloween Meet And Greet Party! Sunday, October 29, 2006

Friday was the CI Halloween Meet and Greet here at school. This is a party hosted by the Audiology and Speech departments here at school, so people (students, staff, faculty) with CIs can meet each other, as well as their friends. Events are held throughout the year, so I’m looking forward to more of these events and can’t wait!

It was a lot of fun, and I wish I was able to be there for the whole thing, but I had to leave for a little bit due to a prior commitment. I did manage to make it back for the very tail end of it. It was great getting to see some people that I haven’t seen for awhile, and some who were totally surprised to learn that I had gotten a CI.

What I learned at this party was that the official total of CI users here at school is 206 students and 15 faculty/staff, with one faculty member soon getting implanted.  Then there was a boy who had a special pair of glasses, and the legs were specially made so they didn’t cause interference/push the CI off the ear.  It was pretty cool, if not futuristic-looking.

 

This is my speech therapist, Karen! I’ve been working with her ever since I started speech therapy here at this school.

 

 

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Are You Deaf Or Hearing? Monday, October 23, 2006

“I hate it when teachers and students see me as this dud that can’t go anywhere without an aid [sic]. I hate broadcasting my deafness to the entire class by having another human being there to assist me. I hate being reminded of my deafness every day.” – a livejournal friend of mine, Chiara

I hear ya, Chiara. I do. Like her, I want independence and not have my deafness be the thing that defines me. I’ve always been a strong supporter of doing things for yourself, taking initative, and going after what you want, and not letting things stop you from achieving what you want. My mom raised me this way, as this was her goal for me in life, to use my own voice.

This is one reason why I don’t understand why deaf people would rather rely on interpreters than talking and listening for themselves. I know that some can’t for different reasons, but there are many that I know that are capable, but choose to be “Deaf”. I can’t fathom that. I want to be able to speak for myself, communicating my own thoughts with my own voice, and hear things for myself.

But I’m not at that point yet. The CI doesn’t give me that ability, and there’s no guarantee that it ever will. Maybe if I was implanted as a baby, when the brain is much more plastic.

Anyways, as a result, today was one of those days where being deaf was thrown into my face. It’s my favorite time of the quarter, registration for the next one. *sarcasm*

The problem lies in the fact that there are a limited number of seats for deaf students reserved in specific sections of a course. I haven’t been able to register due to other issues that are currently being resolved.

But I am now locked out of all the available supported sections for that course, (except for one, which conflicts with every section of my other required class). It’s frustrating for me, because my teacher told me that she absolutely will not add an extra student to the lab class (which I understand the reasons for). Student Services won’t boot somebody from the class so I can have a seat in the supported section. And Support Services does not want to support another section.

So now I’m trying to figure out how I am going to get into this required class and have support. Frustrating, huh?

It just further deepens my desire to become independent and hear well enough on my own to function in a classroom setting. I’m already doing that with my other class, forgoing support, and going with C-Print, so I can practice listening.

So that, with some other things going on related to friends/social life, does not make for a happy me. I feel trapped.

I miss being around people like me or who understand deafness, and are similar in age/maturity to me. I want more of those friends, both inside and out of school. I miss my big sister, because we were a support for each other. As blonde as you are, I still love you and how we “got” each other immediately. 5 years apart has been too long. A few minutes in 3 years is not enough. But it feels like a lifetime with you, and all is right again, in that brief passing.

Sometimes navigating the hearing world by yourself is scary, and at other times, tiring and frustrating. Other times it is absolutely exhilarating and fun!

“What I wouldn’t give to find a soulmate
Someone else to catch this drift
And what wouldn’t I give to meet a kindred”

Alanis Morissette -“All I Really Want”