The Bionic Sound Project

this girl’s journey to sound

I Miss My Residual Hearing Friday, February 8, 2008

Filed under: ipod,karen — Allison @ 12:03 am

Fall 1999. Senior in high school. My only solace was to fall asleep to music every night.

I’d climb in bed with my discman, and jam those earbuds as far in they could go. Sometimes I’d fall asleep with a finger in my ear, holding the earbud juuuust the right way for maximum sound, and using the pillow to hold the other one in place. The music would be turned up as high as it would go, the volume-limiter disabled.

My mom would cringe, afraid that I’d be damaging what residual hearing I had left even more, as she could hear the music emitting from the headphones when she entered my bedroom to tell me goodnight. But me, being the stubborn teenager I was, went on my merry way.

In those days, the music of my choice was Christina Aguilera’s self-titled CD. That was the CD that could get me bouncy in the morning, and soothe me to sleep at night. I would start with “Genie In A Bottle” and often fall asleep by the time “Love For All Seasons” came on. I expanded to other CDs, most notably bt’s “Ima”.

Here I am again tonight, 9 years later, laying in bed. The state is New York, and instead of a discman, the technology is an iPOD. Tonight’s song of choice is blink-182’s “Give Me One Good Reason” (mostly because of the words/instruments (help?) at 0:24-0:30, 0:43-0:50, 1:36-1:49, which have been rattling around inside my head for the last three days)

My left ear is the only one that’s functional, as the cochlear implant has destroyed all my residual hearing. I feel saddened by this, almost two years after my surgery, that I can’t partake in a former guilty pleasure of mine (and that the sound of my CI hasn’t been great of late, and needs some more tweaking, plus I’ve been having other issues.).

I miss hearing sound in its natural state, yet am relieved to still be able to hear it naturally with my left ear and know that it sounds the same when I put my hearing aid on. It’s very odd to lay here hearing sound in one ear, and the other waiting for the sound that will never be. And I miss it.

Advertisements
 

Harmony Info and Hearing Things That Hearing People Don’t Notice Monday, December 4, 2006

Today was the first day of the quarter. I did errands and had a therapy session with Mandy. First I stopped to see Karen about scheduling speech therapy for this quarter, but to no avail. Mandy’s going to be playing speech therapist AND audiologist.

While working out my schedule in Karen’s office, she was typing away at the computer, eating a cracker, and I heard something which sounded like somebody hammering in the distance.

“Karen, do you hear that noise? It sounds like somebody hammering.”

“No, I don’t, I am eating crackers though. That may be what you’re hearing.”

“No, that’s not it, there definitely is a noise that sounds like faint hammering.”

So she stops everything she was doing, and listens for a few seconds.

“I still don’t hear anything.” and after she said that, she leaned down and picked up her bag that was pressing against the buttons of the tape recorder on the floor, making the “hammering” noises that I was hearing.

“There is absolutely NO way that you could have heard that.”

“Yeah, I did hear it. It sounds like ‘thnk-thnk-thnk-thnk’.”

“That is so incredible. It’s just unbelievable what you are hearing. I don’t even know how many decibels that was, but I couldn’t even hear it myself, and it took me a few seconds to figure out what it was! It’s a low, low, low frequency sound, almost silent, and to pick that up, wow!”

So, I went over to see Mandy since it was time for my appointment with her, and Karen told Mandy what happened with my sound discovery, so both of them looked pleased.

I’m going to be seeing Mandy 2x a week for auditory practice, and not seeing Karen for speech therapy, because of all the schedule problems from last quarter, and my final class schedule wasn’t definite until today, and everything’s booked. As a result, I’ve decided to fly solo this quarter without an interpreter for my major class. My teacher does know some sign, and has experience teaching all-deaf classes, and is willing to work with me in his class without an interpreter. It’s scary, but I’m up for the challenge. I just hope I don’t fail, because it is a 5-credit hour class out of 12 credits.

Mandy got back from the audiology conference that was in Buffalo this weekend, and true to her word, she showed me all the stuff she got at the conference, that had to do with the Harmony.

If I thought Megan and Dr. M were excited about the Harmony and what I am going to think of it, Mandy is way more excited about it than they are, and myself. She wants to get started with the Harmony…NOW. Hehe.

So far I’m the only active patient of hers that is going to be getting the Harmony (especially in January) and what I had to hear about the Harmony was pretty interesting.

Among some of the features of the Harmony:

– Built-in programmable LED light that will give system status for different things. It will be like the Firefly for the Auria, but most operations will be programmed to either light up for a short time, or permanently be on during operation.

– programming with the Harmony will be similar to programming with the Auria, but it will be one-click. It will convert the MAPs from HiRes 90 to HiRes 120 with a single click of the button. When I go in with the new Harmony, all it has to do is get my MAP from the Auria, and convert it with the click of the button.

– Users with the Platinum Sound Processor will be able to use the HiRes 120 processing strategy. This is a great way to determine if they like the strategy enough to upgrade and switch to the Harmony. With the Auria, there is no way to test out the HiRes 120 to see if you like it, except for getting the Harmony.

I’m really happy I got my cochlear implant in July, because I will automatically get to start with the Harmony and HiRes 120 processing immediately. I don’t have to wait several months to take advantage of the HiRes 120 Fidelity, as it will be much stronger and powerful than the Auria.

The patients who are getting implanted in January and beyond will not be able to take advantage of the Harmony’s benefits immediately. Apparently, the FDA is recommending that all new patients start off with the HiRes 90 processing/programming strategies (which is the Auria’s capabilities), then switch to the Harmony’s HiRes 120 capabilities 3 to 6 months after activation.

Now that I know what my Auria can do, and sound for the most part is normal, I’m ready to take on the Harmony and reach the next level with my hearing!

 

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.

 

 

(more…)

 

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.

 

this has not been a good week Friday, October 6, 2006

Filed under: appointment,karen,mandy,observations,tiredness — Allison @ 12:43 pm

This has not been a good week. I’m still battling the exhaustation that has plagued me since last week, and therefore haven’t done much in terms of recording my experiences, as I use my free moments to nap or to just relax.

I canceled my Thursday sessions with Mandy and Karen, just so I could catch up on rest and take a break from this constant assault on my senses. And Friday with Mandy has been canceled due to her going out of town for class for her doctorate’s. So I get an extra break until Monday, when she wants to do another hearing test on me to see how the CI is doing.

I’m now thinking that this extreme tiredness is mostly from learning how to listen, a cumulation of the last 2 months (Saturday marks the 2 month anniversary of being activated) have taken a toll on me, combined with the daily ebb and flow of everyday life. (and it can’t be mono, because I’ve already had it, as one person asked me). I worry some people due to my being very pale, but that’s how I am when I get tired/sick.

I come home from school/work and usually collapse on the futon, often falling asleep with my CI on or until the battery dies and I relapse into my world of silence. The news plays in the background, and it is there in the haze of my sleep. It is a weird sensation to be “hearing” in your sleep, after being deaf since birth. I don’t know how to explain it, but the sensation of “hearing” is dramatically different from being deaf in your sleep. And it’s not very restful. Funny how something that you’ve done every day can dramatically change for you, like a new pair of shoes when your old ones have molded themselves to a perfect fit of your feet.

Anyway, I hope that my body and brain will magically find a way to re-energize itself…quickly, because this is not the time to feel like I’ve been flattened by a steamroller (and I don’t mean you, Jen!)

So that’s the update, as two old friends of mine, that I haven’t talked to for awhile, have asked me today for an update on my “hearing”.

 

Use Your Head Sunday, September 17, 2006

While at the lake today, I learned two very important things regarding the CI.

1. Don’t do a header with a soccer ball.
2. Running to catch a frisbee is difficult, especially if you dive for it.

The CI bounces around on the ear or falls off. I had to grab it (yay for awesome reflexes) before it hit the ground.

I need a way to get it to stay put when I’m running around, and still be able to hear. This is going to be important, because I am going to be playing in the IM Soccer league with PHouse, if we get approved. It will be difficult to run up and down the field with an all-hearing team, and only have one hearing aid, and not be able to hear them if they are calling to me.

Mandy called AB on Friday to ask them about replacing the magnet for the headpiece, by adding an extra or stronger magnet.

It’s difficult for me to wear the headpiece under my hair, cuz I tend to tuck my hair behind my ears a lot, and when I do, it knocks the headpiece off. I can’t put it on the outside of my hair because it is thick, and also fine, which makes it slippery.

The AB rep said to not put another magnet on (so I can wear it over my hair), because it would cause irritation and not provide a good “lock” (connection between the headpiece and the implant), and they don’t recommend that route. Instead, I should wear my hair up, cut it short, or shave a little spot where the headpiece goes.(!!!)

I really need to become more adept with styling my hair, and am at a loss of what to do with it right now. Even though I have the XX chromosome, I’m not one of those girls that played with makeup, hair, and clothes growing up. I was very much a tomboy, preferring to get dirty than to be girly.

Last week, I had to do speech testing with Karen to establish a baseline for improvement. The last time I had speech therapy was about 2 years ago. She gave me my results on Thursday, and discussed what I need to work on.

Results From Speech Testing 9/14

Fisher-Logemann Test (single words)
% Consonant Error = 24/67 (36%)
% Vowel Error = 0/16 (0%)
% Total Error = 24/83 (29%)

Clarke Sentences
98% = 4.7 Intelligibility Rating
(1 being lowest, 5 being highest)

Rainbow Passage
Sample of narrative speech reflected more errors than read speech, and errors were:

er (first), /s/ (mostly in the medial and final positions, and in blends)
st, nd, ns, ks
sh, ch

Words that contain nasal sounds also tend to sound too nasal. Carrying the nasality over to adjacent sounds.

Strengths
Overall very good intelligibility
Communicates ideas and opinions clearly
Excellent lipreading
Highly motivated
Highly intelligent

Skill Areas To Work On
Improve selected consonants and blends
Encourage better self-monitoring and self-correction at the conversational level
Practice a slower speaking rate
Monitor and encourage relaxed communication interactions.

The theory is that with the CI, it will be easier for speech because you can actually hear the speech sounds, and as you get more familiar with speech sounds, you will be able to incorporate them into your own speech, and correct yourself.