The Bionic Sound Project

this girl’s journey to sound

9-Month Test Results Monday, May 21, 2007

May 18, 2007

 

Overall, I’m rocking the CI with an 20-30 dB hearing loss. The little circles indicate that I can’t hear ANYTHING in my CI ear without the CI. It’s kinda scary not being able to hear anything, but only feel it when it gets to that loudness. Mandy circled it to indicate where I could first feel it. Being completely deaf with no response, scary scary scary. The most exciting news came with the test results, especially with the Early Speech Perception Test, which, in Mandy’s opinion, is the best indicator of how well the CI is working, because it tests similar words, with different vowels and consonants.

  Fall 11/13/2006
(~3 months post-activation)
Spring 05/18/2007
(~9 months post-activation)
CID Sentences List #8 30% 70%
Cochlear Screening
Level D (Top Level)
31/36 (words) 8/10 (sentences) 33/36 (words) 9/10 (sentences)
Early Speech Perception Test
Category #4 (Top Level)
5/12 11/12

Here’s the link to compare with the test results from 1-week post-activation. Huge change.

NOW CAN I PLEASE GET MY HARMONY??!?!?!?!?!?!?!?!?!?!?!

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What’s The Most Important Thing A Newbie Needs To Know About The CI? Tuesday, January 23, 2007

What’s the most important things that a newbie wants/needs to know about the cochlear implant?

I ask this because the other day, K asked me if I was willing to be videotaped for a “documentary” about the cochlear implant. They have 3 or 4 faculty/staff in the tape, talking about the cochlear implant itself. Do I talk about the device itself? My surgical experience? What activation and the post-activation has been like? So many things, but what’s most important? I don’t want to scare off people through the videotape, because it’s easier to tell people in person, have that interaction, versus just talking to the lens. But I need a haircut first, ahhhhhhh!

Later in the day, I got an email from L asking if I was willing to come to her class on Thursday morning. She wants me (and the other guests) to talk about strategies for success in college. This is going to be interesting, since I’ve had my own share of failures at school, and I don’t really think I’d be the best person, but I’ve learned from my mistakes. It’s funny, some teachers prefer you make mistakes than turn in perfect work, because when it comes to the end of the quarter, this is how they are able to measure if you’ve actually learned from your mistakes and shown improvement. To me, it’s so backwards, but I’m a perfectionist.

I still need to think about the student panel that’s coming up in February or March. So much to think about, and what I want to say. This is already a busy start to 2007, and we’re not even done with January yet.

A student of Mandy’s came in to observe our listening therapy session, and I answered questions for her about the cochlear implant and more. She was really nice, and we did the AlphaCats word lists before we all had to take off for the day.

 

What Have I Gotten Myself Into? Thursday, January 18, 2007

Having one of those “dear god, what have I gotten myself into?” days.

Nothing like a good dose of frustration in many areas to end your day and push your emotions over the edge.

First part was great, as I had therapy with Mandy, then went off to the luncheon hosted by the Women’s Council.

Since we didn’t get to do therapy on Monday due to school being canceled because of the ice storm, I was happy to see Mandy today, even though I had talked to her over the weekend. She and Catherine reassured me that I looked fine, since I was all dressed up. They gave me the once-over and proclaimed me good to go for the luncheon. While this was going on, I found out the panel discussion is going to be either March 16th or March 30th, so I need to start thinking about what I want to say, and prepare myself for questions from the audience. Mandy had just gotten the Harmony release kit from Advanced Bionics, so it was cool rummaging through it and seeing the different items in it. It’s mostly audiologist tools, cds, and booklets. Nothing new to report, that we don’t already know. The release date is still TBA, according to the email.

After that was done, Mandy and I settled in to do word lists. I felt I wasn’t understanding words as well today, even though I could tell if the words were the same or different. I think it was because of my nervousness about the Women’s Council luncheon.

Sarah picked me up and we headed off. The two of us were invited by the members due to being honored with a scholarship. I’m grateful to the Women’s Council for selecting me as one of their scholarship recipients because it does help financially. What I didn’t expect was to stand up in front of the entire room, especially when they read the short bio of information that they collected about me. It’s not a situation one encounters often, so it was a bit nerve-wracking.

After that, there was a wonderful presentation by Bill Klingensmith, who did the Drive Project. I got some ideas for future projects from today’s presentation. Go check his website out, it’s excellent. I’m going to pick his brain one of these days, because I have more questions for him.

The biggest surprise was running into an old professor of mine and getting a hug from her. She’s one of my all-time favorite professors, and I haven’t seen her for a year and a half, so it was a real treat to see her there. I had been thinking about her the other day, and resolved to get back in touch with her. Unfortunately, it was at the end, and we were in a hurry to get back to campus, so I will have to meet with her soon.

I met several wonderful members of the Council, and I look forward to talking with some of them again. I had some good conversations with some of them about deafness and cochlear implants. Plus, the food was delicious, especially the Creme Brulee cheesecake we had. As Sarah put it “it was worth the wait”, since we both were planning to leave before one, but ended up staying for 40 more minutes.

The real trouble happened when I got back to campus an hour and 10 minutes late. Unable to find my class after searching the usual places in 7B, I sent my professor an email asking what was going on. Everybody was out shooting for the workshop, and we were meeting up again at four, but I didn’t know where. Finally, one of my classmates IMed me to tell me the details, so I was able to rejoin the group.

I had an impossible time following my teacher in the classroom we were in. His back was to us. It was dark in there. I couldn’t see my classmates. At that point, mostly out of sheer tiredness from the last few days, dry eyes, and frustration, I was biting back tears.

I’m just tired of and afraid to speak up and say “hey, I can’t understand most of what’s going on”, especially when there’s a good flow of conversation going on. I’m afraid to admit that I’m getting pretty lost lately. I understand him clearly if he stays put, there’s adequate lighting, and he’s the only one that’s speaking. But add in demonstrations, critiques, commentary, and it’s a mess.

I don’t want other people to have to make accomodations for me. I don’t want my deafness to be the first thing that they think of and see. My deafness is not what defines me. The same thing happens with my hearing friends. They forget that I’m deaf and treat me just like one of the group. But that itself is a negative because they forget and I miss out on coversation at the moment.

With the CI, one of my goals and hopes would be that it would allow me to meet hearing people on their own turf, instead of making it all about me and my needs. My teacher and I have tried different strategies, but none of them have stuck from day to day. The class does not revolve around me, especially since I am in a non-designated section for support.

I’ve been working on getting support for 2x a week, but since it wasn’t on the list of supported classes, I was told that I can’t request 4 hours a week of services. I understand that, as there are rules to be followed.

I know this is the risk that I took. I was aware of the consequences of making this decision. I just didn’t expect to hit me this hard, especially in the middle of the quarter. And I know part of it is my fault because I’m not being more aggressive in making sure I know what’s going on.

I didn’t want to fail. I still don’t. But here I am, feeling like that this whole experiment of being independent was a failure. I’m feeling more and more left out. It’s not easy for me to admit, since failure is not an option.

I just wasn’t ready. Or was I ever really ready in the first place?

 

Food For Thought – Writing About Sound Tuesday, December 12, 2006

Creative Writing class, my teacher gave us an assignment where we will take various approaches to writing about a specific place that we picked the first week of class. Today, she had us write about the sounds and smell of that place.

This place is a place I visited in the past before I got the CI. I haven’t been back since because I got sick of being a tour guide for various people, plus I had taken many many photographs there, and they were starting to blend in with the countless other photographs that people have taken. Today I realized that I hungered to go back and listen for the sounds with the CI, because the sounds you will hear, and the environment is unlike anywhere you will ever visit due to its uniqueness.

She had us read back some of the sounds we remembered, and it was amazing listening to my classmates describe the sounds they could hear, but didn’t put much thought to, because it’s all white noise to them.

Precluding this writing exercise was an assignment over the weekend where we had to observe people in a public place for 30 minutes, and “eavesdrop” on their conversations. The reports back from classmates about what people talk about in public was fascinating to me.

I’ve always wanted to know what hearing people talk about, and if it was just me that picked these noises, or if it was everybody else. I’m relieved to know that I hear the same topics as others, but I miss out on all the details that make up the meat of those conversations.

All in all, these last two writing exercises have given me a lot of food for thought in regards to sound. And these hearing classmates are thinking about sound in the way that I’ve been thinking about it since I got activated. Now they understand.

P.S. this place is an abandoned subway.

 

Going Home For The First Time Since August Wednesday, November 15, 2006

I am oh so VERY excited. Today I am going home for the first time since August 30th!

I’m actually at the airport right now, waiting to board my flight, and killing time by posting from my sidekick. Going through TSA was much easier this time, probably due to the high volume of deaf people that live and travel in this city.

Today, the weather couldn’t be any more perfect…51 degrees, bright blue skies, and sunny! I’m looking forward to the weather back home even more…79-82 degrees!

I finished the fall quarter with my last final this morning. This quarter was an interesting one for many reasons, but most importantly, I survived with a cochlear implant.

I’m so excited to go home because I cannot wait to hear what sounds there are back home. I want to know if I can hear the sounds of my dog, cats, and guinea pig. I know my guinea pig makes whistles, squeaks, wheeks, and a whole host of high-pitched noises, but I really can’t hear it unless he’s right next to my ear. Mom says that he calls when he’s hungry, wants attention, or hears the refrigerator open. And then I have my three cats, one which growls and hisses at everything (we don’t get along), the other likes to have “conversations” with you, and the third likes to quietly announce her presence when she jumps up on the bed, commanding your attention, otherwise she gets mad and jumps down. I want to hear toenails clicking on the tile, the clomp-clomp-thump of my three-legged cat as he walks around, the bells jingling on their collars, and the sound of my dog snoring, which always cracks up my mom.

I can’t wait to hear the sounds that my house makes. I want to hear the noises that happen in the neighborhood (especially the kids at the park, which the people on my street can hear).

It is going to be a mind-shock for me because I only got to experience being home for the first 2.5 weeks with the CI, and my brain didn’t understand what it was hearing. Now it’s almost 3.5 months later, and what is going to be different? Am I going to be catching on to what my mom says in conversation even better than I did with the hearing aid? I’m just bursting at the seams thinking about it.

I was talking to Kathy the other day at work about going home. She warned me that I need to be patient with my family, especially my mom. As a grandmother herself, she cannot imagine what it must be like for my mom, away from me while I’m experiencing all these new sounds. My mom has been there with me every step of the way, and she is very, very, very excited to see me and how I am doing with the CI.

Next week, I start up again at my old job (that I didn’t get to work at this summer, due to the complications after surgery), and I’m excited. It’s going to be stressful, with the holiday shopping, Black Friday, and cranky, stressed people. But it doesn’t bother me because I’m more interested in seeing how much the CI helps me in the work environment, working in customer service, and hearing the noises that make up a retail store. So here’s my new test!

Working on seeing Susan at least once or twice while I’m home and continuing with my listening therapy, plus seeing Dr. M for my 3 month checkup, and importing my current MAPs into Megan’s computer.

Ending on that note, that reminds me, I need to go buy a kumquat. 😀

 

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”

 

First Therapy Session with Mandy Friday, September 8, 2006

Today I had my first session with Mandy at 1 pm.

Catherine sat in for the first part of it, and we talked about my CI, and what I had done back home. It was kind of an “intake session” as I am new to their department as a CI user instead of a candidate. Catherine brought up somebody else who had a blog, Tina Childress, who has talked at the school, and is an audiologist who just became a bilateral CI user.

Catherine asked me if I was available on Tuesdays for the CI class, but I have scheduling conflicts and tried to work around it last spring, but no luck. I really wanted to take it, but hopefully they will offer it again Winter quarter. I think it would be highly beneficial for me, as I believe that the best way to make the most progress with the CI is to learn as much as you can about it, and to practice practice practice. You can’t just slap it onto your head and be done with it.

Then it was just Mandy and I, and we talked about my goals with the CI. What did I want to achieve with the CI? I was not sure, as I came into this meeting with an open mind, and no expectations and was going to just let them tell me what we were going to do. I learned back in August, after activation, that I need to relax and just go with flow, and have no expectations. One month later, they ask me what my expectations are, and I don’t have any!

My goals that I came up with today are to be able to use the phone, to make music sound like the HA if not better, to be able to follow conversations in group settings such as with my friends, to be independent of using other people to voice for me/tell me what’s going on.

Mandy then did some tests on me to establish my listening skills with the CI (same tests that Susan had done), and I breezed through all of them, scoring 100%. Her eyes were widening in amazement with each test that was done, and she finally said, after a few moments of silence “I am totally amazed. That has never happened before with others. I’m going to have to brag about you.”

I have trouble distinguishing vowel sounds (which I knew, as that’s where Susan and I had left off), and didn’t do as well as that. They were words that all started with a “B”, such as bed, bat, ball, bird, bee, book, boat, and so on.

So, Mandy now has a lot to do over the weekend to come up with a plan of therapy for me. She is also going to call Susan to get her listening therapy notes, and Megan to find out how she wants to approach the mapping for me. Mandy’s giving Megan control over the mapping sessions, since I’ve done several with her, and the last session I was told to leave the CI alone for awhile, and get used to the program I have. The reason for this is so that my brain can understand the stimulus for sound and adapt to it, instead of a changing stimulus for the same sound.

I also need to start working with/buy “Making The Connection”. Catherine already has the sound files loaded as a MP3 so I can upload them to my iPOD and use them for listening practice. Next week we will find out about the different software programs from AB and Nucleus, as Catherine wasn’t aware of needing a person to help with feedback with the program (unless I misunderstood Megan, as she prefers Nucleus’s program over AB).

I really need to buy a new iPOD, as it’s too small, and the earphone jack is loose, causing static when something is plugged in. That’s going to be one of my big items on my christmas wish list for this year (hint hint to my family).

My current baby is a 20GB 2nd-Gen one from Christmas 2002, that has been absolutely AMAZING, withstanding years of heavy use and abuse. I have 40+ gigabytes of music on my computer, and my iPOD does not hold everything that I want it to. And now there’s more stuff I got to add to my iPOD…some of my old music is going to have to get sacrificed to make room for listening therapy.

I still need to go find a Y-split so I can hook up my hearing aid and CI headphones. Mandy’s going to switch out my bilateral HA cord for a monaural cord, so I don’t have the other one dangling anymore, while I’m listening with my lone HA.