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 Airport Announcements Sunday, December 3, 2006

Saturday, I flew back to school. I had a nearly 2.5 hour layover in Cleveland, Ohio. While waiting at the gate, I was approached by a deaf young man, John T., who also goes to school with me. Felt like I had seen him before, but we found out we had some mutual friends in common, and figured that’s how we probably met. Gotta love the deaf community.

Anyway, the gate I was at, had multiple planes at it (the kind where you have to walk down the stairs and out onto the tarmac). This lead to staggered boarding, as they were boarding the multiple cities at different times.

What I was so excited about was while I was engaged in a conversation in sign, I heard them saying word-for-word over the PA, “we are now boarding for Rochester, New York” and I said to my new friend, “that’s us!”

It was so weird to be able to be engaged in conversation in a noisy airport, and hear the announcement word for word in the background. And at the same time, absolutely THRILLING to be able to understand it with the cochlear implant.

Flying was much better this time around, but my ear still doesn’t like the pressure on it. But I didn’t feel dizzy/off-balance after getting off the plane, and going through the security pat-down was quick, compared to last time I flew out of Phoenix.

I forgot to mention in yesterday’s entry that Megan has been listening to Christina Aguilera way more than I have, and every time she hears her music, she thinks of me. I infect people with the Christina goodness!

My focus since I’ve been activated was to listen to a diversity of music, mostly my favorite songs, to retrain my brain to associate that pulse with that sound. Now that I’ve trained my ears with different music and it is starting to sound natural, I may start listening to Christina’s new stuff more.

I think I didn’t want to corrupt her beautiful voice with the CI until I could get a sense of normalcy with music.

Megan also said that music will be so much better with the Harmony, and both she and Dr. M can’t wait to see what I think of it as compared to the Auria, since I’m a music fanatic.

I also learned that I have to wait for a letter from Advanced Bionics, that will explain about how to get the Harmony, then I have to call and order it, then bring it in to program it. Just a month to two months to go!

A lot of people are getting implanted in January, because they want to get two Harmony processors. I’m glad I got implanted when I did, because I want to enjoy the Harmony when it’s turned on, now that I’m doing reasonably well with the Auria.

Ok, 6:35 am, and I should go do something productive before heading out to the Toy Fair and sushi with my friends! A new sound adventure awaits, and this time it’s one of my favorite things…TOYS!

 

Friday, September 29, 2006

Mandy called AB for me again on Thursday. We finally got ahold of Kathy, and she insisted that either I or my mom had called to place an order, and that we had given them a credit card, and that the last 4 digits were 3313. So I’m positive that it was a mix-up on their part, and supposed to go to another family with the same last name as mine.

Mom just has to send it back to AB, unopened, with a note “Did not order. Wrong shipment.” So that’s been taken care of. But what a lot of hassle, especially for an order that you did not place! I feel bad for the family that is waiting for the headpiece to arrive in the mail, and know it would be awful to go without a working CI for any length of time. I hope they figure it out soon, so that they can get back on the road to listening.

Yesterday, I had speech with Karen. I’m doing well, but still struggling with producing some sounds correctly, especially “Z”. Read Karen my poem for practice, so I can read it in class on Monday. She loved it. So hopefully I will be able to pull it off on Monday, to read it the way I want to. But I’m really liking this approach to therapy that Karen is taking. She has a list of key words that I have trouble with, and using that key word, she asks me a question. I have to answer the question using the key word, and it still allows me to express myself, instead of rote repetition. Spontaneity is good, as it’s most like conversational speech!

Walking to Mandy’s office, I ran into Catherine, and I chatted with her for a few minutes. We talked about the CI class and when they were going to offer it next quarter, and to see if it would be possible to switch it around. She also asked me about how it was sounding, and some of my observations and suggestions for tweaking. Then we discussed the 120-Channel Processor, and that an AB Clinical Specialist was planning on coming at the end of December/early 2007. The training is scheduled to take place close to the release date, so based on the online chatter, I’m thinking that it will be released in January. Anyways, I volunteered to be their guinea pig if they needed one. I really cannot wait to see what will happen with the Harmony, but am focused on maximizing as much as I can with the Auria, because once I get the Harmony, the Auria becomes my backup processor. It’s just fun to dream about what might happen with the Harmony.

Then I met with Mandy for listening practice, and we tried out the HATIS system for the cell phones. It works, but I don’t like having to attach the headset to the phone, and then put it behind my ear. I want instantaneous access to the phone. There’s another version that is made for listening to music, and doesn’t require all these specialized wires for the HA versus the CI. That might be something to look into, as it works with the T-Coil function on both devices.

We did some practice exercises today, and a page from “Nucleus Hear We Go!”. She picked out TV, but it was hard, because I’m behind with current events, since I tend to watch my favorite shows on DVD, only watching hit shows like House and Project Runway these days. So we included famous people and movies. I was offended when she made a comment about my beloved Christina Aguilera, but it’s all cool (since I’m used to hearing it from my friends). (but you started it, by baiting me to put it here, so here it is! meanie. :-P).

But now I will be working with “Making The Connection” on my own at home. Mandy’s got a few more programs she wants to try out with me, but she’s going to show me later. It’s more difficult for her, because a lot of stuff that she would do with newly-implanted recipicents is too easy for me. Or she will start to do something, and it’s not challenging enough. I saw the stack of papers/books she has for me alone for listening, and my eyes bugged out, and I said “you’re kidding me, right?”.

In addition to all the listening practice, she also corrects me when I say something wrong, and helps me to say it right. Today, she kept catching the “z” sound, and had me try to say it. The sound is supposed to start in the throat, and come out through the mouth. She wanted me to put my hand on her throat/in front of her mouth so I could feel the airflow, but I didn’t want to. It’s one thing that I have never liked about speech therapy, is being hands-on/accidentally being spit on/bad breath, so I always used to try and avoid those situations at all costs.

So, when I say “z”, it comes out through my nose. So, I pinched my nose shut, and it works….kind of. Boy, that sound is hard! But hopefully I will get it with more practice and help from Mandy and Karen.

Anyway, I cannot wait for tomorrow, so I can embark on a sound adventure trip with my friends!

 

Post-Activation…One Week Later (Mapping Session #4) Tuesday, August 15, 2006

I am OH so VERY excited. Although, probably not as excited as Megan or Mom was. I don’t think I’ve seen Megan that excited. Today was definitely an awesome day, because not only did Christina Aguilera’s new CD come out today (which I now have in my possession *squee*), I also got some test results with my CI (even more *squee-worthy*).

The answer to last week’s programming riddle: program 1-pulsing, program 2-sequential.

I now have two new programs, and they are getting to the point where they are starting to sound like my “natural hearing”, but faint. There’s still much more twiddling to do with these, but I am confident KNOW that I will reach that point. Even music is starting to slowly sound better.

After programming, I got to do a pure-tone audiometry test in the soundbooth with my CI, testing program 1, then 2. And I have the results of the audiogram. The vertical column measures how loud a sound has to be in order to hear it. The horizontal column is the frequency (or pitch) of a sound, going from low to high frequency.

 

6/22/06 – professional results

 

This is what I can hear with digital hearing aids. The sounds in the “speech banana” is around where normal people with normal hearing can hear it. This is with my hearing aids, and I still can’t hear the high-frequency sounds, so I am sorely lacking in that department.

 

 

8/15/06 – professional results

This is what I can hear with Program 1. My lower frequency (to the left) sounds have improved slightly, but my high frequency sounds have shot way up. I can now hear F, Sh, Th, K, and some others.

 

8/15/06 – professional results

This is with Program 2. This one is a bit louder than P1. Same results as P1, but with a few minor variations in the higher frequency.

Overall, you can see how I’ve changed, going from a digital hearing aids, to using a CI and the results I’m getting one week later. It’s just absolutely mind-boggling and incredible to me, to be able to hear all these high-pitched sounds that I wasn’t able to hear before. I am very excited, happy and looking forward to what’s next!

As soon as I got those results, I went to surprise mom at work, and her face just totally lit up and she was so happy! While walking back to her desk, she was showing the results off to her co-workers, and everybody was amazed, heh. We then went out to lunch with her co-workers (since it was lunchtime when I arrived), and it was my first time in a restaurant since I’ve been activated. I could hear the differences in people’s voices (at our table), and knew if a different person was talking. I could hear speech sounds with the CI that I wasn’t hearing with the HA. Words were fuller and had more detail (but still didn’t make sense to me).

I also had my first speech therapy session with Susan at 3:30 this afternoon. I am going to have to learn to differentiate between similar words but with different sounds/placement. The other fun thing I will learn to work on is tone of voice without using facial/body cues. Gotta start small, then work my way up! Right now my brain is waking up, learning to interpret what all these sounds are that are coming in, and then eventually will start putting some sense to them. It’s kind of like learning how to walk, except you’ve never walked before.

So far, everything is fantastic. I have no regrets. Everything that I went through in July, was well worth it for what I’m getting now. The only negative I have right now is that my incision is itching like mad and starting to become red. We were going to try to switch it to the other side of my head to give my ear a chance to heal (and get the itchiness to go away), but the cable for the headpiece isn’t long enough to pull that off.

I’m starting to wonder if I’m already getting used to this program, because things are starting to sound really quiet once again, so I may be making a trip back to see Megan sooner than later.

Starting today, my hearing aid has started to give me an attitude. I think we have a raging case of jealousy right now, and an unwillingness to coexist peacefully.

New Sounds List
8/14/06 – the word “Now” while listening to Harry Potter.
8/14/06 – hearing benny purr with CI, and realizing it that I couldn’t hear it with the HA.
8/15/06 – differentiating between voices at my table, while in a restaurant

 

2nd Mapping Session less than 24 hours after the 1st one! Tuesday, August 8, 2006

Today I went back to see Megan (less than 24 hours after I had my first mapping session!) to fix some things that were going on with my implant.

I told her about how I emotionally fell apart last night, right after we got home. Both Megan and Kim reassured me that it’s normal to react strongly, and that I’m not the only one who has fallen apart after getting activated. That, and I think the stress of everything since June (mom’s back surgery, my two surgeries, etc.) finally caught up with me. They also told me that other patients were unhappy from anywhere between 1 week to 6 months before they finally liked the way the implant sounded. I also talked about how I felt like I had a radio playing in my head after I took the implant off, and she thinks I may be hearing phantom noises.

They also said that I could come in tomorrow, Thursday, or Friday if I needed to, and we could play around with the implant some more. I felt bad because I didn’t want to take up all their time, because they have other things to do, only to be told “No no no. You’re not taking up our time. We are here to help you and we want you to do well. In fact, our favorite thing to do is Cochlear Implants! So don’t feel bad! And we’re free most of this week.”

Megan started off with trying to eliminate the problem with the “shocking” sensations I was having. We turned off each electrode to see if the shocking would go away, and if things sounded better, and going back and forth. Eventually we turned off electrodes 1, 4, and 8. Electrode 1 sometimes happen because it’s the very first one to enter into the cochlea, and sometimes it’s too deep to provide stimulation. Electrode 4 we don’t know why but we will try again in a few days or weeks. And Electrode 8 was not a surprise to her, because it is right next to where the doctor drilled the hole for the implant, and he did have to drill it 1mm wider 2 weeks ago. She had trouble with getting a response from it in surgery, due to a gigantic air bubble that was present. Hopefully it will clear up soon so we can put it into use.

The volume was also turned waaaaaaaaaay down, and the threshold levels were also lowered. I went up too high too fast with the electrodes, (but it sounded great yesterday!) and when I got into the real world (which is completely different from the quiet and calm of an audiologist booth), I was overwhelmed and getting painfully shocked to the max. My ears are power-hungry and have always been, because they’ve had power Hearing Aids for their entire listening life. Mandy (the audiologist at school) also told me this as well, because I kept wanting “more power!” Kim and Megan talked about how I may not need as much power with this to “listen” because more power = more distortion. We also got rid of all the static that I was hearing with the implant.

Megan also did some more of the words that we used yesterday to see if I could understand them. I’m doing better today, and starting to hear more of the differences in sound (like ‘ch’ in March). Identification is still spotty, but it was better than yesterday. I’m also starting to feel the “sounds” moving around in my head, instead of just on the top of my head…sometimes I “hear” it in my left ear, or on the back of the left-side of the head.

In addition to the fine-tuning, I got new processing strategies/programs today.

The first program is the one I started off with, just a little bit louder (after all of today’s adjustments were done). It’s a “sequential” program, which sends the information like playing scales/chords on a piano. She told me that most people tend to stick with the very first processing strategy that they start off with after activation.

The second program is a “pulse” program, which sends information like chopsticks on a piano. The third program I think is the same as the first program (but I’m not sure how it’s different), but it sounded the most like my hearing aids to me, and I liked this one the best (at the moment). At this point, I need to keep my hearing aid off for awhile, because my hearing aid is “overpowering” the implant (even after I turned the volume down as low as it could go), and I’m focused more on listening with the ear that I can hear more with.

Megan also gave me some information for my friends, so everybody can try to calm down (including me!) and understand how the implant is going to work, and the process of understanding sound, because we’re all excited about it, and that excitement is causing to have a little bit of too high expectations (especially in me). I love you guys very much, but we need to step back and take baby steps.

I also have a xeroxed listening journal and it’s so cute. It has a “listening scavenger hunt” in which I can write down when I first heard a specific sound on the list, and when I first am able to identify it on my own. It’s almost like a baby’s 1st… kind of book.

After that, I left all happy and relieved because I wasn’t being shocked in the head anymore, and because it sounded much better now. I was writing down the times into my sidekick, when I got an email from Mandy (my school audiologist) who wanted to see what was going on and how activation went (since I hadn’t talked to her since surgery #2). Then Dr. M came out of his office just right before I went out the door, and looked surprised to see me there. On the way home, I listened to Christina Aguilera’s first CD, and couldn’t hear “Genie In A Bottle” but I was getting some of her voice in “So Emotional” and “Reflection”, and the first part of “Come On Over Baby (All I Want Is You)”. I can’t really hear the music at all, but the vocal part is what I’m hearing (sometimes).

When Mom came home, I updated her on everything, and she went over the months again with me, and she was happy because I was able to hear the ‘ch’ in March. I’m having trouble with March/May/June, and the J and F in January/February, but I can hear “uary”. She repeated one word that I’ve always said wrong (without telling me), and covered her mouth, and I was able to say it back to her correctly on the first try, which I’ve always said incorrectly.

Right now, I’ve been attending to the job of listening with each program for a few hours, and keep track of information about how it sounded and differences with each program. I’ve been listening to National Public Radio (suggested for practice) for most of the afternoon, and it’s mostly just pulses on the top of my head (I think my brain is getting tired), but I do pick up a part of speech now and then. I only seem to hear speech when it’s up close to me. Background noises exist as a pulse on the top of my head.

But right now my hearing life is basically pulses. A few speech sounds here and there, but that’s it. It’s good enough for me for the 2nd day. I am happy.

 

Post-Surgical Tinnitus, playing the piano, and Music Wednesday, August 2, 2006

Still suffering from post-surgical tinnitus. Mom thinks it’s the fluid moving around in my ear, and that it means it’s healing up (which it better be, since it’s only been 2 weeks). My observation is that it gets worse when I bend over or move too fast.

It’s like a rushing, roaring sound, almost as if a jet plane is taking off inside my head…but it’s so odd, when you only hear it on the right side…so used to hearing sound bilaterally…will be happy to get the CI activated and hear ACTUAL sound instead of imaginary noise. And then there are times when I get the noise, and it makes me want to shut down completely for fear of passing out, because it can be very overwhelming. Just a few more weeks and hopefully it will go away along with the feeling of imbalance.

I find that the more I move around now, the better I can train my brain to get past the “unbalanced dizziness” feeling, and start feeling more normal, instead of resting up in bed. My energy level is also starting to come back, which is nice because I’m tired of being a slug. Just gotta finish the X-Files by the end of the summer!

As for residual hearing, I still have yet to hear anything, but I have been trying every now and then. I’m afraid of thinking that I can “falsely” hear it, which is kind of hard. I have a “memory” of what I sound like, so if I talk, I can trick my brain into thinking it hears myself speaking.

I’ve also started playing the piano again, and I really miss it. I’m amazed at how well I’ve been playing, for somebody who hasn’t touched it for about 2 years. Maybe I should start taking lessons again. Now I wonder how the piano will sound after I get the CI on.

Here’s the info on what to look for in CI-Compatible Cell Phones, located on page 4.

I’ve already started making a list of CDs I want to listen to after I get the CI activated and can listen to music. I know I’m definitely going to buy Christina Aguilera as my reward, because it’s CHRISTINA!

Jun 13 – The Futureheads“News And Tributes”
Jun 27 – Billy Talent“II”
Aug 15 – Christina Aguilera“Back To Basics”
Sep 12 – Basement Jaxx“Crazy Itch Radio”
Sep 12 – Justin Timberlake“FutureSex/LoveSounds”
Sep 26 – Janet Jackson“20 Years Old”
Oct 03 – The Killers“Sam’s Town”
Oct 24 – The Who – “Who 2” (maybe)

Just 5 more days.