The Bionic Sound Project

this girl’s journey to sound

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.

 

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.

 

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

 

National Public Radio Tuesday, October 17, 2006

2:54 pm: Omg! You were just on NPR! – my friend Casey

Talk Of The Nation 10/17/06Letters – Deaf Culture In America

It was a follow-up to last week’s story on As Deaf Culture Changes, So Do The Questions, in which they read comments from listeners on NPR.

If it hadn’t been for the lovely Casey who had been listening, I would have had no idea that my words on the air. Pretty sweet. Thank you!

 

Let’s Talk About Tolerance…Or Rather, The Lack Of It

Today, I had a really low tolerance for sound. People’s voices were driving me nuts. My tolerance level was probably not helped by the ADHD, as we’re adjusting medication doses for me.

Just sitting in class and listening to people talk, some voices were gravelly, and others were scratchy. It was the equivalent of what I would imagine to be nails scratching on a blackboard resonating through my head, and I just wanted to shut the sound out and have quiet.

This afternoon, I had my hardest therapy session to date, due to our activity that Mandy had today, and the new subject content. But first, I was glad I was able to vent my concerns and frustrations with the whole Gallaudet protest to Mandy, because she understands where I’m coming from. I know my friends and family mean well and want to understand, but I feel like they don’t understand why people are upset over it and the significance of the protest for the deaf/Deaf community.

Nor do they understand how I feel being an oral-deaf, mainstreamed kid, and the viewpoints/attitude of the Deaf community that have been stirred up by this recent debate about audism/deafism, and are being somewhat slowly translated over here to this campus, that it’s starting to become more visible of an issue now.

Basically, whatever the outcome of this is, it will have an effect on the intercultural relationships between people in the deaf community, and are best expressed in Allison Kaftan’s post The Worst Thing To Come Out Of This Mess. Fernandes may have brought it up, but the fact remains that that unspoken charge and hostility has and always has been an undercurrent within the community. She just put a name to it.

Anyway, therapy today, Mandy gave me clues to words in a crossword puzzle, but they were related to Halloween. These aren’t common phrases and sentences, so it was a bit of a struggle. That, and I think my brain was being cantankerous today.

Mandy noticed that with me, I am able to reproduce what the given sentence sounded like to me, but it doesn’t make sense. She said that it reminds her of the game Mad Gab.

Here’s an example of what a sentence to me sounds like to me with the CI, and without lipreading or any support.

Hears: A klute toothy puss hull.
Actual: A clue to the puzzle.

The key is in trying to make my brain put the sounds together to form words that make sense when put together.

In the morning, I had a headache while in the ESP lab during our class demo, and having to sit on the floor and look up at the interpreter. So I just stopped paying attention because the strain on my neck plus the lighting and low noise tolerance was too much. I spent some time just listening to my teacher talk, and picking up words here and there.

It’s still a world of garble and gibberish, but the fact I’m able to pick up a few words here and there, makes me pleased.

 

well, that certainly wasn’t what I had in mind when I said I wanted to understand speech. Saturday, October 14, 2006

Well, that certainly wasn’t what I had in mind when I said I wanted to be able to understand speech with the CI. I most certainly didn’t expect to be able to understand that phrase 2 months after activation. Being able to understand “you’re a bleeping bleep” in the background at a party, even with the music playing and people talking, is amazing. Course, it is a phrase that I hear frequently, so it wouldn’t be that difficult, but still… Oy.


all of us (minus 2 people from the picture, and a few who couldn’t come)

My friends were amazed when I turned around from the kitchen where I was doing stuff and asked “who is the bleeping bleep?” (which wasn’t directed at me, but rather an “-ism” one of my friends uses for everybody) and realized that I understood that. There were a few more of those moments during the night, where I was asked something, and responded back correctly, either with an answer or doing what was asked, all without looking at them or lipreading.

The whole concept of being able to understand without actively listening, is very strange to me. But I get rewarded with those rare moments that I understand words or sentences, and reaffirm my faith in the CI.

Showed up on Friday, only to find out from Don that Mandy is sick so no therapy. She didn’t look like she felt well on Thursday, so I hope she feels better soon because it’s not fun to be sick, and because it’s always awesome to see her. And she has a surprise that she is working on for our sessions, so I’m eager to see what she has come up with.

Had speech therapy with Karen on Thursday, and she had a new activity for me. She will ask a question, and I have to answer it, and then have a back-and-forth conversation with her. This allows me to practice listening, and to work on my speech rate, and using good speech while talking. The majority of my errors come not from when I’m reading the word/doing drills, but rather from being spontaneous. This is going to be a lot of fun, I’m excited.

She also forwarded me an email with the listening therapy websites online, and it is comprehensive! I need to get internet at home, so I can use them on my computer, because the Macs at school don’t seem to like the files, as I discovered on Thursday.

At 2 pm, National Public Radio did something I’ve never seen before. They had live captioning on the web for a story that was being talked about live on the radio. The subject matter was the October 12, 2006 – The Evolving Debate Over Cochlear Implants as well as Deaf Culture in America: As Culture Evolves, The Questions Change, and they encouraged deaf people to call in. They were cool working with the intepreters and relay operators, even though radio is a fast-talking medium, attempting to squeeze many words into a short amount of time. Now if some people in the world took the lead of NPR on this broadcast, life would be good.

Don’t forget to read A sampling of comments from the audience members. Be sure to read about the one titled “Social and Emotional Impact of Oralism”, as it is a topic I am very familiar with, and strongly support.

I would have called in/listened during those shows, but I was at work.