The Bionic Sound Project

this girl’s journey to sound

It Doesn’t Change How I Like It…LOUD Thursday, February 1, 2007

After a few months of avoiding music because my brain was tired, graduating to playing at low volume, then listening to it through headphones, I finally realized something tonight.

No matter how deaf I am, if I have a cochlear implant or not, I’m always going to like my music loud.

Unfortunately, this doesn’t bode well for the poor souls that are within a five-mile radius of me, whether on the road or at home.

There is nothing like the feel of the bass pulsing through your body. The vibrations cascading down your back. The ripples of the sound as it skips around your ears, giving you a pleasant rush, leading you to the crescending high. Music is my drug. It’s an addiction that I can shake, but only for so long.

I just have to blast it, drench myself in sound. I have to feel it through every inch of my body. And tonight, I had the feeling of being reborn through the songs.

“4 My People (Basement Jaxx Remix Radio Edit)” – Missy Elliott
“Lazy (Original Mix) [feat. David Byrne]” – X-Press 2
“Young, Fresh N’ New (Timo Maas Remix)” – Kelis
“It’s Gonna Be…(A Lovely Day) [Bini&Martini Club Remix]” – Brancaccio&Aisher
“Shifter (Full Vocal Mix) [feat. MC Chickaboo]” – Timo Maas
“Salsoul Nugget (If You Wanna) [Extended Vocal Mix]” – Girl Next Door
“Groovejet (If This Ain’t Love, Then Why Does It Feel So Good) [Extended Vocal Mix]” – Spiller
“What A Girl Wants (Thunderpuss Dirty Club Mix)” – Christina Aguilera
“Freakin’ You” – Jungle Brothers
“Rendez-Vu” – Basement Jaxx
“Blue Skies (Deep Dish Blue Phunk Mix) [feat. Tori Amos]” – bt
“Lapdance (Paul Oakenfold Swordfish Mix)” – N.E.R.D.

The cochlear implant won’t change how I like my music. It does give me the ability to hear it when it’s faint, but it doesn’t have the same energy and intensity for me. I cannot deny who I am.

So! In the words of Nintendo’s Game Boy Campaign from the 1990s…“Play It Loud”. Rock on! \m/

And for the eardrums everywhere who hoped that the CI would make things quieter…I’m so very sorry.

p.s. If you’re familiar with any of those songs, and can think of more that I might enjoy, please share!

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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.

 

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?

 

How Will People See Me With The CI? And Interactions With Friends Wednesday, September 20, 2006

When I first returned to school, one of the major things I was wondering about with the CI was how much more noticable would it be/how would people see it as compared to the hearing aid.

The most common question I get is “didn’t you have a different color on yesterday?” I’ve been asked this by my boss, the interpreters, and a few classmates that haven’t been familiar with the CI/me. Matt W., one of my photo classmates, asked me this last night when I ran into him at Commons, and told me the rainbow one was his favorite. I thought I should put this in here, because it’s been an reoccuring theme, but never thought about it.

I feel much more confident in wearing the CI as compared to the HA, because I don’t have to worry about feedback or squealing noises. I was always afraid of being in a group of people, and not being told my HAs are giving me feedback and irritating people with the squealing noise, especially since I’m on my own now.

I’ve also worried about hugging people, and having the HA squeal in their ear, since it always makes me embarassed, especially if it’s an emotional moment (such as somebody crying), and it would be impolite for me to pull away. Instead of squealing, the magnet gets knocked off slightly, or gets attracted to their glasses frame (without coming off of my head), but it doesn’t bother them, and I like it better that way.

I remember my sophomore year of college, when Eileen, one of my all-time favorite teachers, kept looking at me during the lecture/critique, to try and tell me that I was getting feedback. She finally pulled me aside and quietly told me that without making a big deal in front of the whole class. If it hadn’t been for her, I would have driven the hearing people crazy, as I was in an all-deaf environment at the time (dorm, friends, activites, etc.) except for classes which were mainstreamed. And it turns out there was a crack in the tubing, causing the squealing.

I love how people react to feeling the magnet/implant under the skin. When I get asked questions, I sometimes offer to let them feel the bump on my head, so that they know what it is like. I usually take their hand, and guide it over the area, so they can feel the difference.

The reactions of people are so varied, from totally grossed out, to awe, and to deviousness such as finding other magnetic objects to stick to my head in the future. There are some who flat out refuse to touch it (or look at the incision area), like my stepmom, and my stepbro and I both like to call her a weenie, hehe.

Last night, while eating dinner out in the hall, my friends decided to try and do listening drills for me. It was really difficult, as the common dorm noises, and people talking/music playing, plus the acoustics, made it nearly impossible.

I’m glad my friends are enjoying this and wanting to help out, but the flip side of the coin is that I feel frustrated when I can’t get anything right or understand it.

I know that what I think I hear is really different from what is said. Sometimes it is really hilarious to them, but I can’t help but feel bad because I am trying.

The perfectionist in me feels like I’ve taken steps backwards. It says to me that I’m letting myself and other people down, because I’m not catching on quickly. But how I must remind myself that there are so many variables coming into play, that affect the dynamics of this listening situation, which really isn’t optimal for me, AT ALL. So I can’t beat myself up over not catching on.

Maybe I just need to lighten up and not be sensitive about it. After all, if you can’t beat them, you might as well as join them. Best thing is to laugh about it, instead of getting upset.

And to remind myself that they really do have my best interests at heart. It’s new to me, and it’s new to them as well. We’re all in this together. Maybe it’ll be better after some of them come with me to auditory therapy sessions with Mandy, and understand it better.

 

The First Few Days Back – Friends, Classmates, and Campus Life Sunday, September 3, 2006

Wow! The last few days have brought me a plethora of new sounds to hear and experience. I’m amazed by all these sounds that I didn’t have before.

I wasn’t sure what the reaction people would have to me with the CI, especially in PH (which is all hearing), but they all seem cool with it. I also see myself as being a bit more open to talking to/meeting new people, but at the same time, really shy about it because I feel like I can’t hear them as well.

The first night back, I was having trouble with the HA, so I turned it off, and was struggling to hear/understand all the conversation with people, plus being exhausted from flying.

My friends have latched onto the word “mango” and won’t leave it alone either! Jen G. felt my head, and was grossed out by the fact that there is something under my skin! I still need to train my friends that even though with the CI, I still can’t automatically understand and know everything that’s going on. Although I have been told by them that even they themselves don’t know what’s going on either, so it’s just not me.

Saturday night I went to a dance party hosted by the school, and I had another sound revelation here. I could hear the vocals, the differences in the music/melody, and the crowd noise. With the hearing aid, it was one big blast of sound, where everything just meshed together and sounded completely like music.

I was totally amazed that the CI and HA had different performances for one extremely loud and noisy situation, and I much prefer the sound of the CI than the HA for that dance event.

The phantom noises have all but disappeared and have stopped waking me up in the middle of the night or early in the morning. I was getting tired of hearing voices I couldn’t understand in my ear, especially when they wake me up from my sleep.

I have discovered that I absolutely *HATE* the sound of the faucet (bathroom and kitchen) in my apartment. UGH!

 

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.

 

Listening Ability? How Does One Learn To Listen? Friday, August 25, 2006

It’s only been almost 3 weeks, and I’m already worried about the CI and my listening ability.

I wonder if I’m doing the right things to maximize my potential. Am I listening to the right stuff? Am I doing the right kinds of things to try and maximize my speech perception? All these types of questions and thoughts have been swirling around in my head.

I’ve been so used to doing therapy, therapy, therapy, and getting feedback from what I’m doing, that right now I feel like that what I do, on my own, isn’t helping. Everything I do has a visual component to it. It’s difficult to watch TV or read along with books, because I fall back on my “hearing aid” training, and use my vision more than using my brain to listen and understand what is being said. At the same time, I’m not getting the reinforcement of “yes, what I heard or thought I heard is indeed correct.”

On Monday, Susan said that I need to write for myself and not for others (where have I heard that before?). She wants me to write a daily log of my adventures in sound, and what I’m hearing, so that I can look back in 6 months and go “wow, that was a really rough time, but look where I am now and at what I’m hearing! YAY ME!”

I do well with the words in a list format, but have trouble with sentences. Mom did word lists with me, after I saw Megan earlier this week, and she started a new category of vegetables with me. However, I got it the hard way, instead of “mushroom”, “lettuce”, “tomato”, I was getting “portabella mushroom”, “bibb lettuce”, and “roma tomato”. That’s pretty much standard for our house, as we get different kinds of specific veggies for my guinea pig. However, I did get “jalapeno” right on the first try! She’s also been reading my favorite childhood book, “Cars, Trucks, And Things That Go” to me for listening practice. I love that book so much.

Today, I saw Megan for #6 and we tinkered around with the speech program some more. I have trouble with “C” and “M”, and hearing the first part of a word. I also told her about my concerns with listening. I know I don’t have patience (especially for somebody my age, as I was reminded by my dad on activation day!) and want more! She brought out the other computer that had the Sound and Beyond program that was made by Cochlear Americas. I got to play with it for awhile, and it was fantastic. I loved how if you get a word wrong, it repeats the correct word and the wrong word, so you can compare it.

This kind of program is right up my alley because it has a similar concept as the Touch&Tell that I had as a kid. What can I say, I love hands-on learning! It is awfully expensive, 290 dollars, but it might be an investment well worth making if it will help me, and I did enjoy using it…I could have played with it all day if I was allowed to.

I got 76% on the words when we played with the computer, she said I was doing pretty well for just under 3 weeks. The other cool thing this program does is that it plays music and then lets you pick which instrument produced that melody. I was able to get the piano and the xylophone right. But when it came to the violin, ughhhhhhhhh it sounded horrible! And I used to play the violin! But the piano sounded much better (after 10+ years of playing, I should have an ear for it).

Electrode #13 doesn’t have that special sound for me anymore. It’s so weird, because it sounded nothing like it did the last time. Megan did the beep test again today, and Electrode #6 sounded exactly like my mom’s old car alarm (park avenue) when it goes off. Now I have a way to describe what it sounds like to those who can’t hear what’s in my head!

T-Mic Hook: P1+2 – speech, P3 – 70/30 mix for DC.
DC Hook: P1+2 – iPOD only, P3 – 70 iPOD/30 environment.

I also have a battery log that Megan created so I can find out if I have a bad battery, a bad “charging slot” or if it’s just the program that is draining my battery fast on the CI. I do have powerful programs on my CI which draws a lot of power off the battery. My 18 hour battery is only lasting 12 hours, and I was totally unprepared for that the other day when the CI battery died on me.