The Bionic Sound Project

this girl’s journey to sound

Advanced Bionics Neptune Processor Monday, June 4, 2012

With the announcement of the waterproof, swimmable Neptune sound processor, I am beyond excited about this. I have been waiting years for a hearing aid that was able to withstand water, and strong enough for my hearing loss (and still waiting). And now we have a cochlear implant processor that can do it? AMAZING.

I have been following the news around the Neptune, and while I am not sure if I will qualify for an upgrade, as I already have the Harmony. The Neptune is is definitely a huge step forward in Cochlear Implant technology.

However, after thinking about it for awhile, the ability to hear in all environments slightly scares me. I’ve gone my entire life without swimming with hearing aids on (other than that unfortunate incident at the babysitter’s when I was five). I vaguely remember the feeling of “WOW! I CAN HEAR”, as I climbed out of the pool and my hearing aids died their quick, waterlogged electrical death.

Throughout my life, as a water baby through and through, logging countless hours in the pool as a child growing up in the intense heat of a Phoenix summer, and as a competitive swimmer for one of the nation’s top high school girl’s swim teams, I’ve made it by without hearing. In high school, one of the highlights of my life was a five-day whitewater rafting trip down the San Juan river. There were people who signed, so I wasn’t alone, but I still spent time on the water in silence. All these years, and I’ve made it through my aquatic life, without hearing sound.

Now to think…what will it sound like to be swimming, and hearing the noise of the water as you are surrounded by others? Of playing Marco Polo, and being able to participate with the hearing children at daycare? Of hearing the bird calls while floating down the San Juan in a ducky boat? Of not being afraid of being thrown in the pool with my hearing aids on. Taking kayaking lessons and having the full experience of hearing the teacher’s instructions on how to do a roll to get one upright. Of floating outside today in my pool, in silence, enjoying the blue sky and sunshine shining down on me.

There are pros and cons to the Neptune for my personal use. To hear while wet is a foreign concept to me.

I think today’s kids who have this chance to fully participate in the life aquatic are extremely lucky. Thank you, Advanced Bionics, for creating this swimmable processor.

 

On The Virtues Of Batteries Thursday, June 14, 2007

Today, at work, my battery for my hearing aid was starting to die. I wasn’t hearing my coworkers or the guests in the store very well, and had a few near-collisions today. But what sucks more is that it leaves me out of conversations (even though I can follow along SOMEWHAT by lipreading, but it’s MUCH harder), and guests who don’t know I have a hearing loss, get frustrated with me, and go off in search of somebody else. It’s not too bad when I’m with my team lead, or other coworkers that I’m familiar with, so that’s a relief, but still.

In regards to the battery issue, my hearing aid is frustrating because the battery doesn’t give me a warning that it’s about to die (I suppose I could keep a calendar, and change it on a regular interval, but that’s beside the point). My old hearing aid used to make a click-click-click sound to let me know that the battery was dying.

With the cochlear implant, there’s no warning. It just dies. It’s clear cut and dried. It doesn’t cling onto its last gasping breath, nor does it trick my ear into thinking it can hear, but faintly. I know it’s dead, because I can’t hear anything, nor do I feel the stimulation in my head. It’s weird describing the process of the battery dying, but it’s like everything grinds to a halt, with one last pulse shooting through your head.

I prefer the fact that that the CI doesn’t mince with a dead battery, like the hearing aid does.  When it’s dead, it’s dead, and I’m not running around struggling to hear.

In terms of sound, I’m having trouble with sounds lately with the CI. Music is starting to be icky, sounds are starting to be unfamiliar or rough. I don’t know if it’s time for a remapping, since I haven’t had one since….winter quarter? Usually, you get one at 3 months, 6 months, and then 1 year. But as Megan and Mandy can attest, I’m very particular with my MAPs, refining it to the last detail.

I can’t wait till I can put my order in for the Harmony trade-in. ONE MORE MONTH. (and at the same time, I don’t want it to be July, because it means the summer’s half over!)

And that means July 10, will be my 1-year anniversary of getting the cochlear implant. I cannot believe that almost a year has gone by.

 

Phonak MicroLink MLxS FM System Monday, January 22, 2007

Today’s goal was to get the FM System to work with the cochlear implant. This time, Catherine helped us fix it, and it worked on the first try!

I have the Phonak MicroLink MLxS FM system, along with the audio shoe (T-SP) for the Siemens Triano SP and the earhook (iConnect) for Advanced Bionics.

The boots/earhook look and feel humongous, so one of the issues is cosmetics versus being able to hear. I admit I’m turned off at this huge bulking monstrosity that’s perched on my ear, but after learning what it can do, it’s amazing and may be worth it.

I can hook it up to a stereo/television/computer/ipod and walk around my apartment, wireless up to 100 feet depending on which “cable” is used. The signal strength depends on which cable is used as the antenna is located in the cable. There’s also an option to use it with a cellphone, through BlueTooth, but I didn’t pay attention to that, as my hearing isn’t for telephone use.

Last night, I tried it out on my own at the apartment. It was after quiet hours, so I hooked it up to my computer, and I could hear the music from anywhere in the apartment, loud and clear. The best part was being able to do everyday activities, without having to worry about cords, dropping the iPOD, catching it on something. TOTAL FREEDOM. I could have used this last year, without having to freak out about my iPOD falling out of my pocket and into the tub of chemicals when working in the darkroom.

I can see how this technology can be manipulated…such as hooking it up to my iPOD, putting it in my backpack, and listening to music during really boring lectures (like I would ever do that). But the fact that the technology exists is what is so exciting to me. Nobody else knows that I’m listening to music but me.

I think my mom is going to be very excited about this. No more music blasting through the house when I’m at home. 😀

The only negative to the system that I can see so far, other than the cosmetics is that it cannot be used on an airplane while in flight. It operates on a radio frequency, and the booklet says “do not use on aero planes”. I also get static with it, but I’m not sure if it’s a microphone issue or a channel issue. The FM receiver can be changed to different channels, so if you’re in an area where wireless loops are available, you can change to that channel. But if you’re nearby, and have it set on that channel, you may not get the information from your area, due to interference.

 

Having A CI Takes A LOT Of Mental Energy Thursday, October 19, 2006

More and more, I’m starting to realize how much wearing the CI takes a lot of mental energy. By the time I get home after a full day of school and work, I’m drained and take a nap. It’s not an optimal situation, because napping at 6 pm, leaves you unable to sleep at bedtime.

Yesterday afternoon, while at work, my CI started freaking out (or so I noticed). I asked Sid if she could hear anything, and she went on a sound hunt with me. I figured it was just an anamolous event, as Sid couldn’t hear anything that would account for the strange glut of prolonged beeps and whistles that I was hearing (in P1). This was peculiar, as the office usually is very quiet.

As I sit here at the bus stop waiting for the always-late bus, I’m hearing the same sounds rippling through my head again, much to my dismay. I’m about ready to rip the CI off and say “to the heck with it all” (my patience is shot for this week). However, I have to realize I’ve gone through the same problems with the HA itself, so I can’t be too hard on the CI. It’s easy to call it a “miracle”, but as with any piece of technology, it will have problems.

I hope it stops soon so I can get back to “normal” hearing (whatever that may be).

 

Do I have a “name twin” out there? Wednesday, September 27, 2006

Oy. Mandy took the liberty of calling AB this morning to find out what was up with the e-mail that I got last night regarding the CI.

Apparently, a Mrs. My-Last-Name called yesterday to place an order to replace a headpiece, because it was broken.

I am baffled as to why this is, because nothing’s broken with my CI. Nobody has made an order to AB regarding a broken headpiece. I haven’t called, and I know my mom definitely hasn’t.

But wait, it gets stranger still. I call a few hours later to follow up on Mandy’s phone call, because she didn’t know if one of us had placed an order and that I would need to follow up. Kevin, the guy I spoke with, informs me that there is no order in their computer system.

After several minutes of going over this, I was getting very frustrated with him telling me that there is no record of any kind in the system. It is impossible for there to be no record because I have the invoice and the FedEx tracking number. Finally, he tracks it down, and says that it’s not an order, but an exchange, and that it was called in by my audiologist. At that point I was so confused, and so was he.

So now I need to call Kathy, who was the one who placed the order, to find out who was calling, why it was sent to me, and what to do with it at this point. She’s busy all day today and tomorrow, so I left a message.

Meanwhile, my mom emails me to tell me that FedEx has delivered the package, and she wonders what to do with it, if she should send it to me here at school. So I guess we will have to wait.

Blast for it not being the new processor. That would have been awesome.

(Edit: I talked to Megan, and she said she called about a headpiece for another patient who has the same color as mine, and that AB accidentally sent her 2 for that patient. She also told me that my name is not on any of the return merchandise lists. Hopefully this will be cleared up soon.)

Anyway, this whole thing has me wondering if I have a “name twin” who also has a cochlear implant.

Moving on to positive news, I debuted my poem about the CI today at the Poetry Slam hosted by the faculty of the English department. I had my teacher read it for me, because it is hard for me to speak out loudly and clearly in a room full of people, and I wanted to be sure that they understood every word.

As I listened to my teacher read it out loud, it was amazing to hear another person’s voice read about the struggles with being deaf, with my poem. It was as if she was the author. I was trying to not cry, because I could identify with it (even though it was my poem). I saw some heads nodding in the room (population of 1,100 deaf students on campus, there’s no way you won’t have an interaction with a deaf student/be familiar with deafness), and the interpreter was trying not to get emotional as well.

When the event was over, Vic, one of my hearing classmates, came up to me, and told me that she really liked it. She mentioned that she shared it with one of her volleyball teammates who is deaf, and wanted her to tell me that she really really liked it. So that was just incredible for me, to hear that.

That’s for another day, after I have my class critique.

 

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.

 

Initial Test Scores for Sound & Beyond Monday, September 18, 2006

There are moments where I miss the simplicity that hearing aids have when it comes to listening to sound in its wholeness, and hate the CI for not giving me that same access to sound. Then there are the rare moments where the intricacies of sound are revealed to me with the CI and revel in the amazement of it, and I fall in love all over again with the CI.

Listening with a CI is *NOT* a quick update or a quick fix to hear music or sound in its entirety. It takes lots of practice to get to that point.

The baseline test scores for S&B from Friday, 9/15
Consonant – 15%
Vowel – 35.42%
Food Words – 94%
Melody – 75%
Instrument – 61.1%
Animal Words – 98%

These scores help the program pinpoint where I should start and what I need to work on. Today, it assigned me to start with Level 2 for vowels, and Level 1 for consonants.

Unfortunately, this afternoon I was feeling frustrated and apathetic. While doing the consonant training, I had to determine which sound was the different one out of three, but had no idea what was being said. I can tell which one is different, more than 80% of the time, but it drives me crazy that I can’t UNDERSTAND what is being said.

It really bothers me that with some words, the only way I can differentiate is to compare how they “feel” and what kind of pulse is happening in my head. Sometimes I’ll hear a speech sound and then the rest of the word is a pulse. This is not what I expected sound to be like. But the point is that I have to train myself to listen to it and just got to keep working at it, and have PATIENCE.

I am also having problems with the sound dropping out, or gaps where there’s absolutely no sound (especially when its really noisy, it seems as if it’s overloaded the CI so no sound comes through), and Mandy realized that Megan had set the RF to manual. She changed it to PoEM, so now program 1 is with PoEM, and program 2 is same as program 1, but on manual. Program three is the same from last week, where we added gains in the high frequencies.

Today, I woke up at what I thought was 16 minutes before I had to leave for my class. I shot out of bed, and turns out it was only 7:17, but I still overslept by more than 45 minutes. I somehow changed the time on my clock instead of the alarm clock to get more sleep. As a result, I didn’t get to do my hair today, and it made it difficult in terms of wearing the CI (especially with wet hair).

In the book, AB suggests shaving around the part where the magnet is (which makes sense, but not necessary in my case as the hair’s already thin there) so the other option is wearing a headband.

I told Mandy it’s a good thing the 80s are back in fashion, because I would be in style with a headband. But first I need to get clothes that go with headbands! I love the 80s, especially the Hypercolor t-shirts!

But the one sentence I understood while waiting outside Mandy’s office, was her saying “thank you very much” as she hung up the phone.

 

Use Your Head Sunday, September 17, 2006

While at the lake today, I learned two very important things regarding the CI.

1. Don’t do a header with a soccer ball.
2. Running to catch a frisbee is difficult, especially if you dive for it.

The CI bounces around on the ear or falls off. I had to grab it (yay for awesome reflexes) before it hit the ground.

I need a way to get it to stay put when I’m running around, and still be able to hear. This is going to be important, because I am going to be playing in the IM Soccer league with PHouse, if we get approved. It will be difficult to run up and down the field with an all-hearing team, and only have one hearing aid, and not be able to hear them if they are calling to me.

Mandy called AB on Friday to ask them about replacing the magnet for the headpiece, by adding an extra or stronger magnet.

It’s difficult for me to wear the headpiece under my hair, cuz I tend to tuck my hair behind my ears a lot, and when I do, it knocks the headpiece off. I can’t put it on the outside of my hair because it is thick, and also fine, which makes it slippery.

The AB rep said to not put another magnet on (so I can wear it over my hair), because it would cause irritation and not provide a good “lock” (connection between the headpiece and the implant), and they don’t recommend that route. Instead, I should wear my hair up, cut it short, or shave a little spot where the headpiece goes.(!!!)

I really need to become more adept with styling my hair, and am at a loss of what to do with it right now. Even though I have the XX chromosome, I’m not one of those girls that played with makeup, hair, and clothes growing up. I was very much a tomboy, preferring to get dirty than to be girly.

Last week, I had to do speech testing with Karen to establish a baseline for improvement. The last time I had speech therapy was about 2 years ago. She gave me my results on Thursday, and discussed what I need to work on.

Results From Speech Testing 9/14

Fisher-Logemann Test (single words)
% Consonant Error = 24/67 (36%)
% Vowel Error = 0/16 (0%)
% Total Error = 24/83 (29%)

Clarke Sentences
98% = 4.7 Intelligibility Rating
(1 being lowest, 5 being highest)

Rainbow Passage
Sample of narrative speech reflected more errors than read speech, and errors were:

er (first), /s/ (mostly in the medial and final positions, and in blends)
st, nd, ns, ks
sh, ch

Words that contain nasal sounds also tend to sound too nasal. Carrying the nasality over to adjacent sounds.

Strengths
Overall very good intelligibility
Communicates ideas and opinions clearly
Excellent lipreading
Highly motivated
Highly intelligent

Skill Areas To Work On
Improve selected consonants and blends
Encourage better self-monitoring and self-correction at the conversational level
Practice a slower speaking rate
Monitor and encourage relaxed communication interactions.

The theory is that with the CI, it will be easier for speech because you can actually hear the speech sounds, and as you get more familiar with speech sounds, you will be able to incorporate them into your own speech, and correct yourself.

 

“It’s A Sound Good Thing” Thursday, September 14, 2006

I’ve been listening to music with the CI at home for the last few hours, as opposed to being hooked up to the iPOD. It’s so hard to describe music with the new map now, but basically my mind is just blown.

At 9:07 pm, I heard my first actual “s” in a song. I heard “Sugar baby” in Crazy Town’s “Butterfly”. I know that I can expect the “S” in my mind, but when you actually experience hearing it in a song (especially one that is considered nu-metal/rap-rock), it’s amazing!

I’ve written about listening to music since the day I’ve been activated. With each mapping session, sounds evolve and change over time, that I just get more amazed with each nuance and discovery that I make with the CI. It’s very interesting for me to analyze it, and what I am missing.

Right now, it sounds so much clearer (especially with the HA on at the same time), but I am getting so much more information in the CI ear that I can’t hear with the HA.

The reason I can tell the difference is because I actually can hear or “feel” the stimulation of the sound, whereas the same feeling/sound does not translate to the HA ear.

That’s one way I have learned to compare if sounds are the same, based on the “feel” in my ear (if I can’t understand it). For a person who may not understand or have the appreciation for sound, this may be difficult to understand. You can differentiate between sound, by its own distinct “feel”, and I am not sure how much of a role residual hearing plays in that.

This whole experience with music is kind of disturbing to me, because I consider myself to be a music fanatic. Right now my perception is being rocked to its very core and will continue to do so as I progress with the CI.

I finally heard some more on the 120 channel processor, and its official name is the Harmony. The difference between the Harmony and the Auria, other than the programming strategies, is that the Harmony will have a built-in T-Mic, and be a “power miser” to deal with the battery drain issues.

I excitedly anticipate seeing what it looks like. I cannot wait to stick it onto my head, and have even more fine control over music and the sound spectrum!

As for listening with the iPOD with the HA, I’m about ready to break the door that covers the electrodes off the HA. It is so difficult to plug in the audio boot because it requires a fine amount of dexterity and lots of patience. There’s this whole complicated process to putting it on, but it makes me prefer the audio boot of my old HA, which I could just snap on quickly. It’s frustrating, because the industrial design side of me, wants to take my training out and put it to use redesigning it! The design flaw makes it neither functional nor practical and is an annoyance when I’m moving about and it doesn’t stay put.

On Tuesday, Apple announced several new iPODs, one of which has a capacity of 80-gb! My wish has been answered! There’s something out there that will fit my entire music collection, which currently tops out at 42-gb. Yippie!

 

“A Get Together To Tear It Apart” Saturday, September 9, 2006

Last night was a spur-of-the-moment get-together/party.

As we left the dorms to head to the apartment, I was scared by the sudden loud booming noise and crackling sounds that shot through my head. In fear, I looked at my friends to see what was going on, and they were as confused as I was. Seeing their faces, and then hearing popping noises made me think somebody was shooting off a gun. Then the sound came back, more painful this time, along with a bright flash of light that danced across their faces. “What is going on?!?!?!” and the answer was “somebody’s setting off fireworks in the quad.”

We piled into the car, and we could still hear the fireworks going off, as we drove away. Even a half-mile away, I could vaguely hear it with the CI but not with the HA. Then it stopped, and we figured it was over.

As we rounded the bend in the road, the fireworks started up again. After much begging and pleading to Stef, she pulled over into the parking lot, where we all piled onto the hood of her car to watch the show.

After watching for awhile, I turned off the HA to see how fireworks sounded different with the CI. It was very faint for me, even though we were close to the launch site. I could “feel” it more and got more hearing from “feeling” it than I did with the CI.

At one point, I told Jen, who had retreated to the driver’s seat, to tap the horn, and she said she already did. “You did?” I asked, with an incredulous look on my face. I did not hear it at all, even though I was sitting on the hood of the car, smack dab in the middle. How could I not hear it with the CI, even though I had always been able to hear it with the HA, when I was standing next to a car?

After we returned to the apartment, the listening problems continued. Listening to the music play in the background, my friends talking (often all at once), and still not understanding what was being said, was difficult.

It got worse as we got louder and more rowdier, because I still couldn’t understand, and sound got more distorted. I felt bad interrupting the flow of conversation, even though I was constantly asking in the beginning what was said, and repeating back what I heard, which lead to some hilarious sentences.

After awhile, I felt like retreating into my old self, where I pretend I know what’s going on, and really don’t understand. I may have a basic idea of what we’re talking about, but not the details. I hate cheating myself out of being a part of a social interaction. It doesn’t matter, sign or speech, it is hard to follow either one after awhile (especially with my attention span, due to the ADHD), but sign is easier sometimes.

It’s only been a month and two days since I got activated. It is times like these where I wish things could happen faster, but I know I have to be patient.

Yesterday, Mandy lent me a book, “Wired For Sound” and I finished it in 2 hours this morning. It is an interesting look at deafness and cochlear implants, and the whole experience of it all, with supporting evidence, facts and quotes from people.