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.

 

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.

 

First Visit to the Audiologists at school, and therapy session with Karen Thursday, September 7, 2006

Today I went over to the audiology/speech department at school for the first time since last May. My first therapy session, speech with Karen, was at 1 pm.

While waiting for Karen, I saw some of the audiologists that I knew, Don and Catherine, who I have worked with in the past. Both knew about my interest in the CI, as Catherine was interviewed by me for an assigned story for the school newspaper (which didn’t get published). This lead to my interest about going through the evaluation process, which she did several times, due to my chickening out. Don was the one who started the process of new digital hearing aids with me, until he was completely booked for the rest of the quarter, and I saw Mandy instead. There were some other staff that I didn’t know, but knew who I was, after Catherine mentioned that I was the writer of this blog. I felt strangely like a mini-celebrity.

After exchanging greetings, Catherine told me that she “just had to say this to me…Mango”. That lead me to do a fake walking out the door in protest.

The dirty little secret that everybody doesn’t know is that I had a mango smoothie for lunch today, and bought mango fruit the other day for a snack.

I was asked different questions from the audiologists about the CI, and Mandy appeared from her office in the middle of it, and I was excited to see her. I didn’t get to finish answering all the questions, as Karen came along, and it was time for my therapy.

Karen and Mandy have worked out a plan of therapy for me, in which I do speech (and listening if necessary) with her one time a week (due to schedule conflicts), and see Mandy 2x a week for listening therapy. It has been so long since I last saw Karen, either spring or fall 2003, so we had to do new testing for me.

We started off with going through the battery of speech tests: Fisher-Logemann, Rainbow passage, Clarke Sentences, and a 2.5 minute free speech recording. All of these tests were recorded into a computer, where they will be listened to by a professional familiar with deaf speech, and a person not familiar with deaf speech, and scored. Next week we will get started on actual therapy.

I talk extremely well, but my biggest challenge is that I talk too fast! I also tend to drop some sounds in speech, out of habit/laziness, and sometimes use “stop” signs in speech instead of flowing continuously.

Regarding the dizziness, I had another bout this morning, leading me to trip over a box that I have yet to unpack and lose part of my poor toenail in the process. At the suggestion of Mandy and Catherine, I called Dr. M’s office this afternoon to follow up. Dr. M said that the dizziness is sometimes brought on by a change in altitude, and should subside soon.

 

The final session for summer 2006 – saying goodbye Tuesday, August 29, 2006

Today it really hits me that I’m leaving and no longer working with Megan, Kim, or Susan (for a long time). I had my last therapy session with Susan, until Nov/Dec., if not till summer 2007. And I was just starting to get comfortable and settled in too.

Susan said she was going to be sure to tell Karen to pick on me about Mango. I already beat Susan to it, by telling Mandy and Karen to beware of certain people suggesting mango for a therapy word!

Today, we did the usual round of sentences and words where I looked at the paper, and told her which one it was. Doing pretty well with it, but it’s not real life. Then a new test for me! Category/Keyword, open set. We did entertainment for the category, and several different keywords (whatever was given related to entertainment (i.e. emmys – “did you watch the emmys on sunday night?”)). She would tell me that she was going to say a sentence related to entertainment, using one keyword. I had to repeat it back what I heard her say and where it was in the sentence. I was getting 60% for my first time, and able to repeat it back. The brain is a funny thing…you hear something, and you know it’s not right, so your language system kicks in to make it right. It’s amazing.

Pretty good for 3 weeks. But I still have a long way to go, and for the other test, have trouble differentiating between similar sounding words, and if they sound the same or are different. That was my reality check for the week, because I did badly on that one.

So yeah, Allison, you’re doing amazing with the CI for three weeks’ time, but this is just the beginning of a long hard road ahead. As Coach Seaquist used to say…“keep on swimming.”

Next Stop On The Tour: Mandy, Karen, and a whole new world of sounds, people and experiences. I fly out tomorrow. Oh boyee.

 

Mango…The Word That Just Won’t Die Monday, August 28, 2006

The word that just won’t die…MANGO.

Megan said she was going to send me a care package of mangoes to me at school. When I come back in a few months, I’m bringing her a kumquat just because. Maybe an onion. But it better not be a combo of mango and fennel. It’s a good thing we don’t have our own cooking show on the Food Network.

Had #7 today…spent close to 4 hours in there. First I had to see Dr. M. for my checkup. The blood is gone from my middle ear and my eardrum is not purple anymore, but it’s still swollen. He had Megan do a test to see if I have any residual hearing, and I don’t, but it’s probably still too soon to tell.

After that, instead of being in the auditory room, Megan set up in the same exam room that I was in the day I got activated. She had both computers, the programming one, and the Sound and Beyond one. She would tinker with my CI while I was playing with the program and listening to words, telling her what sounded funny as I was going through the exercises, but the picture of the rabbit in the food category is a terrible picture! I was doing pretty well, scoring between 85 to 96 percent with the CI alone. However, I started having trouble with some familiar words, such as cat. And while comparing programs, she would say “how does this sound? what time is it? mango.” just to rub it in because I hate that word!

At one point today, Megan was on a mission to find out just how much I am hearing with my CI, and help me see that the CI is working better than the HA and I’m hearing way more than I think I am.

88% with CI alone.
96% with CI and HA.
80 or 84% with HA alone.

Course, I was cheating because I could not hear the laptop very well with the HA, and had my head right next to the keyboard at intervals so I could hear it, until Megan made me sit up and stay put. :-p

The other thing that has been an issue with the CI is that it sounds good at first, and after a little while, it starts to sound bad (even while I’m still hooked up to the computer). Over a few days, I go from being able to hear voices within a room, to only being able to hear within one to two feet around me. I always thought it was because it was because my neuro-adaptation was fast, but that might not be the case due to what AB said. Kim said they had a patient like that, but that was a long time ago. We also experimented with the pulse width, and at times it would sound awesome, almost like the hearing aid, but there would be a bit of an echo. It’s very frustrating tinkering with the CI, because when one thing sounds good, another thing sounds bad. And there are times I don’t know how to explain it. Sometimes I feel like I’m hearing in my left ear as well, because the sound from the CI seems to “translate” to my left ear.

Megan got on the phone with AB and figured out a plan of troubleshooting. She also taught me how to put the magnet on correctly, in a way that doesn’t twist the wire. We ended up having to go into the bathroom to do that so I could see how she was doing it, and walked past a family that was there for a candidate consultation so it was a little funny. I could also hear people speaking, but couldn’t understand them, and Megan said it was because they were speaking Italian.

The Problem Of Missing/Changing Sound – Solution
1. Make sure wire for magnet is secure, and placed on head properly.
2. Change out T-Mic (possible moisture?)
3. Change Battery (possible low power?)
4. Dehumidify it (and I need to stay on top of making sure the crystals are yellow, cuz the moisture from the environment affects it too.)

I am still not used to the concept of older people getting CIs. My experience has been that younger people and children have CIs, but never people who are in their 40s or older. I’ve always seen them with little ITE hearing aids, or just deaf, while us kids have had the BTEs or the CIs. I’m going to have to get used to it.

Kim had to remind me today that I’m doing extremely well with my CI, and that I need to be patient. She reminds me of and sounds so much like mom, with the “no nonsense from you” talk, and knows just exactly how to get me to shush and stop to think, just like mom does. “How long has it been?” “And you’re getting a score of what?”…”3 weeks…and 96%.” “That’s pretty good.” So here it goes…..I’ve got three programs to experiment with for a week and a half to two weeks. It’s going to be a challenge to leave my CI alone and learn to appreciate it without any adjustments in that time period. Patience is NOT one of my virtues as Dad has reminded me.

Kim also told me that her patients seem to prefer Verizon for their cell phones, so that’s something to keep in mind. I’m hoping that my phone can make it until the full-QWERTY version of the Blackberry Pearl comes out in Q1 2007.

In NY news, I talked to Karen, and she’s going to talk to Mandy about how they can best work with me when I return. I’m going to miss seeing Megan, Kim, and Dr. M, but I will see them in a few months. I really don’t like saying goodbye, especially to people that I like working with. Sometimes it’s nice to finish what you started, with the people you began it with. And this is why being bi-coastal stinks…I can’t have the best of both worlds in one place. I always have to say goodbye to a group of people in each place and adapt to a new environment and time zone two times a year, and I hate it (especially when I have to leave my family).

Today’s Sounds List
– Recognizing clapping at a restaurant
– Mom coming up behind me at noisy restaurant and saying “Sweetie”, and me not paying attention

That was my first recognized word on its own, where I’m not paying attention, and able to understand it without having to think about it.