The Bionic Sound Project

this girl’s journey to sound

The Christmas Post Wednesday, December 27, 2006

I still have yet to write about the CI Holiday party, but that will come once I get the pictures ready.

Flying home was good. My ear wasn’t happy, as I’ve been having stabbing pains and itchiness. Also had several attacks of dizziness in those prior weeks.

On the flight, I was able to understand “the current temperature in Pittsburgh is forty-four degrees” “thank you for flying us airways” “we are now preparing to land” over the announcements.

When we landed in Phoenix, I was grateful to a guy who recognized me from the flight, because he was able to listen and help us find our bags. We had been waiting and due to the holiday crush, somehow our flight didn’t make it onto the baggage claim board, so we were waiting for 30 minutes. By the time we found out where our bags were at, there weren’t very many left, and the carousel was stopped. Oy. But if it hadn’t been for him, I would have thought they were just very behind in unloading, since we were sitting out on the tarmac for 25 minutes due to the disruptions of flights all over the country because of the blizzard in Denver.

Christmas Eve was nice. I don’t know what I was worrying about, with meeting new family members, but everything was just fine. I worry about how kids handle a person that is deaf, and I think it stems from the fear of being ridiculed or made fun of when I was growing up. But it was all good.

We went to the 8:30 christmas eve mass, all 16+ of us, and it was too far for me to see what the priest was saying, so I just listened. I understood “our father” and “celebration” out of the entire sermon. It was easier to follow along with the music, but I preferred listening with the hearing aid than the cochlear implant, because music is just sounding weird lately.

I have the same issue with playing the piano. I really hate playing with the CI because it just sounds….blech. But I did notice I picked the optimal ear to get implanted in, because the right ear can pick up the higher frequencies on the right side of the piano, whereas the left ear is better at delivering the lower frequencies with the hearing aid.

I got a new iPOD for Christmas, and I am just thrilled. I can’t wait to get back to school so I can upload my entire music library on it.

Well, that’s it for now. Time to meet with Susan. Have a very happy holidays!

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Playing The Piano Thursday, November 23, 2006

Tuesday I saw Susan for auditory therapy. She said that I had basically finished the book, as it goes up to Level D. When I last saw her in August, I was getting 60% on the sentence tests with the keyword in the sentence. 3 months later, I’m getting 70% on the sentence test without the keyword. Magic.

Driving back home from therapy, I was listening to the radio, and heard a song that I thought sounded like it would be one of Christina Aguilera’s. I looked down at the text playing on the dash, and it was “Hurt”. I haven’t listened to her new CD that much, especially in the last few months, because I’ve been all over the place with music, trying to get a wide exposure to different genres (minus Country). So it was cool to recognize it based on the music/vocals.

Wednesday night, I sat down at my piano, as we had just moved everything from the first floor back into the house on Tuesday. The tile and the painting is done, and the first floor doesn’t echo anymore. The CI really loved the echoes (not), especially when my dog is barking. Fingers poised, I excitedly anticipated what the piano was going to sound like, as I have been waiting for this for 3 months.

Pressed the keys for my favorite chords, the measure by how I rate a piano’s sound, and was pleased. Started playing some of the songs I knew and was in good shape.

It was when I took off the hearing aid to play the piano with just the CI, that I was shocked. I was just absolutely disappointed in how it sounded. The richness, the warmth, the emotion of the music didn’t come through at all. I could hear the thunk-thunk as the keys pressed down, or the hammer striking the tightly-wound wire inside the great belly of the beast.

There seemed to be a lag or even an echo when playing. I played several songs and my heart grew heavier by the moment, as there is no way that I could play the piano with just the CI by itself. I felt like it had gone through electronic filtering and I was only hearing bits and pieces of it. There were some notes that came through with the CI and others that didn’t. It felt like an electronic version of music.

Maybe it will resolve the more I play the piano, but even when I was first activated, music didn’t quite sound like this. I hope the Harmony will resolve this issue with playing the piano, because if it doesn’t, this may be the one thing that keeps me from ever going bilateral.

Tomorrow is Black Friday, and then we are having our small Thanksgiving dinner after I get home from work. Hope you all had a enjoyable Thanksgiving.

This year, I’m thankful for the Cochlear Implant, and for everybody who made it possible. I’m thankful to all the people who have been a part of this journey, and helped me to get where I am today, and continue to do so. That’s my thanks for this year.

 

A Shopping Sound Adventure Monday, October 23, 2006

Saturday, I went out with my friend Matt to do some errands, and it turned into a sound adventure.

We went to Sam’s Club, where my attention was immediately drawn to an electric drum kit. I sat down and placed the headphones over my ears (no feedback, TOTALLY AMAZING), and played around with the drums. I *loved* hearing the sound of the different drums, the hi-hat and ride cymbals. It would have been awesome if I had time and knew how to fiddle around with it so I could hear the splash cymbal and the different toms. I’ll have to wait till I go home for the break and play with my drum kit and piano.

I also played with the electronic keyboards, but I’m not a fan of those for reproducing piano playing. I much prefer the rich, warm sound that resonates within the wooden chamber of the piano. It fully envelopes you in sound, whereas the keyboard is limited to just the output of the speakers/headphones.

We also went to Party City to look at Halloween costumes for me (I adore Halloween, it’s my favorite holiday, and he was being a poop about not celebrating, that I had to try and get him into the spirit, ha :-P). While waiting in line to try on this amazing Rainbow Brite-like costume (which didn’t fit), I could clearly hear the people behind me talking, but couldn’t understand what they were saying. In addition to that, I was going nuts just listening to the little kids push and pull on every conceivable costume prop there was. The maddening one was the rat-a-tat of the machine guns, and they weren’t going off in unison. It really was overwhelming, with the spooky music, the costume props, and the din of people’s voices, as it was very crowded.

Since I’ve never been to Panera Bread, we went there for dinner as I had a coupon for a free meal. As we pulled into the parking spot, I recognized the song “Days Go By” by Dirty Vegas, playing on the radio. It is impossible to figure out what techno song is playing on the radio, unless you are intimately familiar with it, which I am not in the case of DV. I was so suprised and excited with that discovery, because it means a lot to me to be able to recognize music on the radio or playing in the store.

Then, when we sat down to eat, I could hear the crackle of the wrapper and the rustling of the paper bag as Matt unwrapped his sandwich. The restaurant was noisy, with every table full of patrons, and I could still hear the crackling, even without looking at it. That was new to me, being able to hear the sound of paper crumpling, when there is a lot going on in the background. Matt also told me that dishes were breaking, but I wasn’t able to discern between the sound of dishes breaking and the sound of dishes being stacked.

We went back to his apartment and watched movies while I mooched off their laundry, instead of paying for it at the laundry room. I could hear the washer and dryer going from the couch, even with the door closed, only during quiet parts of the movie. I found it helpful to hear the laundry, because I was able to jump up and tend to the laundry when it was done, instead of having to time it, or checking to see if it was done yet.

So, Saturday night was a fun adventure in sound. I really enjoyed it.

I just got an email from the oral school that I attended from the age of 3-5(?), and they are preparing for the alumni weekend this summer. It will be a blast seeing the entire school family again, especially my old teachers that I adored. I also can’t wait to see how the kids from my group have grown up, when I was an counselor during Summer 1998’s “Bugs! Bugs! Bugs!” camp. It was one of the best summers of my life. I am grateful to my former therapist, Sharon and her family for “adopting” me for three weeks so I could participate in the camp. I don’t know how to repay their kindness, but thank you so much.

Anyway, nothing like the thought of going back to your old roots. I miss it all, and wish I had stayed in closer contact during my formative years, as they were fantastic during the time I was there.

 

Music Is Life Friday, September 15, 2006

I have never been able to recognize music – classic tunes that everybody can recognize just by the notes or by humming.

Today, Mandy started me on the Sound&Beyond program, to test me with the vowels and consonants to establish a baseline. After I finished that, I was allowed to play with the program, and did musical instruments first, which I did okay with, 61.1%.

She then suggested I try out the melody portion, which I didn’t know about/did not do with Megan. It had songs like Ode to Joy, Amazing Grace, Twinkle Twinkle Little Star, Wedding March, Alphabet Song, This Old Man, Baa Baa Black Sheep, Happy Birthday, Rock-A-Bye Baby, and Beethoven’s 5th.

I expected to do poorly, because the only songs I can recognize are my favorite songs by major artists that I listen to frequently. The ones I’ve been listening to over the years, on repeat, starting in 6th grade. There is no way I have ever been able to sit down and be able to tell you what classic tune was being played at the moment.

Then, after I got my digital hearing aid, I was able to start figuring out what band it was, but not the song, unless it was a favorite song of mine.

Now with the CI, after today’s test, I was proven wrong….

I got a SEVENTY-FIVE PERCENT accuracy, out of 16 questions, on my first try, without any practice or training beforehand.

Some of the songs were played in different keys, and I think I picked up on it (need to verify with Mandy on Monday.) Mandy said that the sound was pretty quiet coming from the speakers, so that was another surprise for me. Then I surprised her/confused her when one song I was positive was the “ABC Song”, and started singing along with it. She had to listen to it closely, and it was actually “Twinkle Twinkle Little Star”, played in a different key.

I guess it goes to show that classical music training and playing the piano made a difference. I have a much better sense of timing and rhythm now. I also don’t have to bang the keys as hard in order to hear it, and my playing has improved (according to my mom). I learned to understand and appreciate the musical scale, chord progressions, style, tempo, harmony and melody.

Thank you Aunt Flossie, for giving me your old piano, and paying for my lessons, back in 1991. It really paid off. 15 years later, I’m still playing on that piano.

Thank you to my piano teacher, Deborah Preach, for being willing to teach a deaf kid how to play the piano, for 5 years of lessons, and having a lot of patience with me to learn and appreciate it.

Thank you to Mom and Dad, for taking me to piano lessons and waiting until I was done. For putting up with my playing, as terrible it was at times, and for my obsession with the chord combination of E-B and E-A, in middle C. Not to mention the times I tried to compose songs, and was obsessed with finding the perfect sound, just like Beethoven.

Thank you to my family, for all their encouragement and support, even when I played badly. For putting up with my constant love for music and indulging me, even when it was blasting throughout the house, often on repeat.

And look where I am today, first time ever listening to this, and I got 75%!

Maybe now I can finish teaching myself how to play the drums (thanks to Helen’s christmas present a few years ago, an electronic drum kit), then get started on learning how to play the saxophone, hammond b3 organ, harmonica, and experiment with vocoders/synthesizers. I’m not exceptionally skilled with guitar playing, and I didn’t like playing the violin when I was in 3rd grade.

More later about the last two days, as it’s Friday night, and I want time to myself to relax. I’ve been on the go all week with 7 am-1am days, and tomorrow’s my all-day photo shoot, plus there’s a picnic at the lake on Sunday with PHouse.

 

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.

 

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.

 

Hearing Aid Woes, and CI stuff Monday, March 13, 2006

To make a long story short, my hearing aids are messed up.

Remember this entry where I talked about battery problems? Well I found out why today. I’ve had my hearing aids for about 8+ years, and the normal lifespan of hearing aids is around 3 years. They were awesome ones…the Widex P38s.

So, my options are that I need to either:

1. get them fixed (at a cost of $130 per hearing aid, with no guarantee they can be fixed)
2. get brand new ones (at a cost of $1,100 per hearing aid)
3. get one brand new hearing aid, get one fixed, and then get the cochlear implant.

The Hearing Aids/Cochlear Implants I’m Looking At (For My Degree Of Hearing Loss)
My only demand is that they *must* be compatible with my iPOD. Can’t live without it. And if I get a CI, I need to be able to plug both the CI and the hearing aid into my iPOD…I wonder how that’s going to work. :-/

Digital Hearing Aids

Oticon Sumo DM
Oticon Syncro 2 Power
Siemens Triano SP

Cochlear Implants

Nucleus Freedom
Advanced Bionics Auria
And a new cochlear implant is coming out this summer from Advanced Bionics that has 120(?) channels, as compared to the current implants that are 22-24 channels.

My first choice from when I went through the evaluation last spring was the Auria, and then the Freedom. I was already declared a “very good candidate” on March 24, 2005. I am scared to death, but at the same time, this might be something that I should do, especially since I have till the age of 26 to get nearly full coverage on the implant from my insurance company as long as I am a full-time student. The new genetic technology/hair-cell growth that they’ve got in the guinea pigs and chickens is still anywhere between 10 to 20 years off. And I realized that by then I will be 33 or 43…why wait that long? Especially since I have so many years ahead of me right now, in this moment.

Advanced Bionics is said to be better with music. And the new 120 channel one sounds really promising. But if you really want to listen to music, digital hearing aids are the way to go. I’m afraid to lose my ability to listen, recognize, and differentiate the sounds in music. I still want to be able to play the piano and the drums and be able to appreciate the full range of tones and sounds.

I spent nearly 4 hours at the Hearing Aid Shop today…first getting new earmolds…waiting 30 minutes for my appointment, then nearly 2 and half hours in the audiology booth doing testing and trying to reprogram my hearing aids, without much luck. Then he called my mom and talked to her about what was going on.

The normal battery drain is 1.5mA…mine was at like 3.6 and 2.7…which was really bad. And for the test, it was doing these things he had never seen, with sharp spikes and drops at each frequency point till it leveled out to what it’s normally supposed to do. And all those batteries that I kept replacing? They’re all good…practically brand new. We tested them in the charger.

I can barely hear in one ear, and the other one is okay…I finally switched them around, since I’m more left-ear-dominant (even though my hearing loss is greater in that ear), so now I can hear, but it sucks. I have to wait between 10 to 14 days to get my new earmolds. then I have to get a new audiogram, then test out the digital ones for awhile and see which one I like. After that, I can get started on the CI stuff. Oy vey.

Hopefully I can have the CI surgery this summer (with the Auria or with the 120-channel)…either at St. Joe’s, or Mayo Clinic.

In addition to all that, there’s screwup over the serial # of one of my hearing aids…apparently it’s listed as being on the shelf at Widex, and the one they have listed as me wearing now, I don’t even have on. And the first number (off of my records) belongs to another person. I need to call and trace back all my audiology records.