The Bionic Sound Project

this girl’s journey to sound

Susan, Webinars, And The Emergency Vet Thursday, November 30, 2006

Tuesday, I saw Susan for listening therapy. She was near the end of the “webinar” for the new Advanced Bionics Harmony processor, so she brought me back to her office so I could see what it was like. It was interesting watching and listening to the webinar, and seeing some images and testimonials for the Harmony. I love how AB is using technology to bring the information out to the masses.

Susan also mentioned an term called “auditory closers”, and that’s something I want to look into, because it has to do with a combination of the brain’s processing versus the actual listening of what is being said. That’s one reason why I can figure out what is being said, even though I may not have heard everything that was said in the sentence.

I had a bit of trouble with some sets of sentences, and not so much with others. It’s interesting how the same sentence, said in different ways, can make more sense as compared to repeating it. I like it when I get things correctly, but they like it when I’m challenged by it!

Wednesday, Susan was talking to Megan and I came up in the conversation, and it was discovered that there was an miscommunication in the scheduling, so I will be able to see her and Dr. M on Friday instead of waiting till January. Yippie.

Wednesday night, we had a freeze warning for our area, and my poor 14-year-old dog fell in our pool. She was already showing the symptoms of not feeling well, but after the pool incident, she definitely was very sick, so we took her to the emergency vet. She’s going to be okay, but she’s a very sick doggie. It was both interesting and sad being at the emergency vet, because it was a listening sound adventure for me.

I felt awful listening to the poor dog that kept howling and crying because it was in a lot of pain after it got attacked by two other dogs. The cochlear implant gave me the beginning and end of the howl, whereas the hearing aid just picked it up and ended it at mid-howl. I could hear the emotion in the howl, which really tugged at my heartstrings, because I wanted to help ease the pain for the poor dog. I could also hear the different howls, barks, and yips from the different dogs, and it turned into a game of figuring how how many dogs were speaking at once, and differentiating between the “voices”. It really wasn’t a game, but we were waiting for quite awhile, and I was interested in what I was hearing, as it was a new environment.

My mom commented that it was interesting that I was hearing all these sounds and bringing it to her attention, as she never really thinks about it, as it’s all white noise to her. However, it depends on what it is, and if it catches her attention or not. So we got into a discussion of how hearing people filter out the sounds, and it was interesting to hear about it.

I could also hear the employees talking, and was figuring out if it was a male or female voice, the chair scraping on the floor as it was pushed back, a drawer being closed, and I was identifying all these sounds from inside the examination room, and my mom was confirming what I was hearing for me. However, I did hear one person laugh, but couldn’t tell if it was male or female.

So yeah, it was an interesting night. I’m just glad my dog is going to be okay, and I hope that other dog survives as well as the other sick animals there.

 

Let’s Talk About Tolerance…Or Rather, The Lack Of It Tuesday, October 17, 2006

Today, I had a really low tolerance for sound. People’s voices were driving me nuts. My tolerance level was probably not helped by the ADHD, as we’re adjusting medication doses for me.

Just sitting in class and listening to people talk, some voices were gravelly, and others were scratchy. It was the equivalent of what I would imagine to be nails scratching on a blackboard resonating through my head, and I just wanted to shut the sound out and have quiet.

This afternoon, I had my hardest therapy session to date, due to our activity that Mandy had today, and the new subject content. But first, I was glad I was able to vent my concerns and frustrations with the whole Gallaudet protest to Mandy, because she understands where I’m coming from. I know my friends and family mean well and want to understand, but I feel like they don’t understand why people are upset over it and the significance of the protest for the deaf/Deaf community.

Nor do they understand how I feel being an oral-deaf, mainstreamed kid, and the viewpoints/attitude of the Deaf community that have been stirred up by this recent debate about audism/deafism, and are being somewhat slowly translated over here to this campus, that it’s starting to become more visible of an issue now.

Basically, whatever the outcome of this is, it will have an effect on the intercultural relationships between people in the deaf community, and are best expressed in Allison Kaftan’s post The Worst Thing To Come Out Of This Mess. Fernandes may have brought it up, but the fact remains that that unspoken charge and hostility has and always has been an undercurrent within the community. She just put a name to it.

Anyway, therapy today, Mandy gave me clues to words in a crossword puzzle, but they were related to Halloween. These aren’t common phrases and sentences, so it was a bit of a struggle. That, and I think my brain was being cantankerous today.

Mandy noticed that with me, I am able to reproduce what the given sentence sounded like to me, but it doesn’t make sense. She said that it reminds her of the game Mad Gab.

Here’s an example of what a sentence to me sounds like to me with the CI, and without lipreading or any support.

Hears: A klute toothy puss hull.
Actual: A clue to the puzzle.

The key is in trying to make my brain put the sounds together to form words that make sense when put together.

In the morning, I had a headache while in the ESP lab during our class demo, and having to sit on the floor and look up at the interpreter. So I just stopped paying attention because the strain on my neck plus the lighting and low noise tolerance was too much. I spent some time just listening to my teacher talk, and picking up words here and there.

It’s still a world of garble and gibberish, but the fact I’m able to pick up a few words here and there, makes me pleased.

 

well, that certainly wasn’t what I had in mind when I said I wanted to understand speech. Saturday, October 14, 2006

Well, that certainly wasn’t what I had in mind when I said I wanted to be able to understand speech with the CI. I most certainly didn’t expect to be able to understand that phrase 2 months after activation. Being able to understand “you’re a bleeping bleep” in the background at a party, even with the music playing and people talking, is amazing. Course, it is a phrase that I hear frequently, so it wouldn’t be that difficult, but still… Oy.


all of us (minus 2 people from the picture, and a few who couldn’t come)

My friends were amazed when I turned around from the kitchen where I was doing stuff and asked “who is the bleeping bleep?” (which wasn’t directed at me, but rather an “-ism” one of my friends uses for everybody) and realized that I understood that. There were a few more of those moments during the night, where I was asked something, and responded back correctly, either with an answer or doing what was asked, all without looking at them or lipreading.

The whole concept of being able to understand without actively listening, is very strange to me. But I get rewarded with those rare moments that I understand words or sentences, and reaffirm my faith in the CI.

Showed up on Friday, only to find out from Don that Mandy is sick so no therapy. She didn’t look like she felt well on Thursday, so I hope she feels better soon because it’s not fun to be sick, and because it’s always awesome to see her. And she has a surprise that she is working on for our sessions, so I’m eager to see what she has come up with.

Had speech therapy with Karen on Thursday, and she had a new activity for me. She will ask a question, and I have to answer it, and then have a back-and-forth conversation with her. This allows me to practice listening, and to work on my speech rate, and using good speech while talking. The majority of my errors come not from when I’m reading the word/doing drills, but rather from being spontaneous. This is going to be a lot of fun, I’m excited.

She also forwarded me an email with the listening therapy websites online, and it is comprehensive! I need to get internet at home, so I can use them on my computer, because the Macs at school don’t seem to like the files, as I discovered on Thursday.

At 2 pm, National Public Radio did something I’ve never seen before. They had live captioning on the web for a story that was being talked about live on the radio. The subject matter was the October 12, 2006 – The Evolving Debate Over Cochlear Implants as well as Deaf Culture in America: As Culture Evolves, The Questions Change, and they encouraged deaf people to call in. They were cool working with the intepreters and relay operators, even though radio is a fast-talking medium, attempting to squeeze many words into a short amount of time. Now if some people in the world took the lead of NPR on this broadcast, life would be good.

Don’t forget to read A sampling of comments from the audience members. Be sure to read about the one titled “Social and Emotional Impact of Oralism”, as it is a topic I am very familiar with, and strongly support.

I would have called in/listened during those shows, but I was at work.

 

You Know You Love Your CI/Audiologist When… Monday, October 2, 2006

This is how I know I love my CI and my audiologist. Mandy had to cancel therapy for today (and Friday) and I am supremely disappointed! (but it works out, because this week is midterms, and I am definitely starting to feel the effects of stress/overtiredness as of now.)

This weekend was a revelation of sorts. I didn’t get to do much of a sound adventure, but I am starting to be able to catch more and more phrases in conversation, without looking at people. I still get words wrong, but they are so similar in sound to the actual word, which is amazing.

But spending the weekend with my friends, just listening to them talk while in the car, and interrupting them when I understood what they said, and getting confirmation, was an eye-opening experience for me, and a real test in how I’ve been using the CI and how well it’s starting to work, almost 7 weeks later. It was a real world application, in an environment free from interpreters, sign language, and other assistance. I was out of my element, and in an unfamiliar place, and relied on listening more.

I also found that the CI does better with hearing music or separating it from road/engine noises. There wasn’t a need to blast eardrums out in order to hear it over the din of the engine (and we were in a Jeep). I know Mom will be happy about this, because one thing we fight about is how loud is loud enough, and if I can hear it faintly, wonderful!

Saturday night I discovered that I don’t do well in the back of a minivan, because it really made me feel dizzy.

Other than that, I absolutely love David Byrne’s voice (of the Talking Heads fame), so I have started listening to his albums today (both solo and with the TH). I first discovered David Byrne last fall, while working in the darkroom, and X-Press 2’s song “Lazy (Original Mix)” came on.

In addition to David Byrne/Talking Heads, I’ve also got a bunch more new music to listen to, so my collection has grown to 31 days, 47.22 GB, 10,892 tracks.
My teacher assigned me to the music/sound mini-anthology for my class, so this is going to be interesting. I debuted my poem today, and got applause at the end of the reading. It gave me goosebumps.

 

First Visit to the Audiologists at school, and therapy session with Karen Thursday, September 7, 2006

Today I went over to the audiology/speech department at school for the first time since last May. My first therapy session, speech with Karen, was at 1 pm.

While waiting for Karen, I saw some of the audiologists that I knew, Don and Catherine, who I have worked with in the past. Both knew about my interest in the CI, as Catherine was interviewed by me for an assigned story for the school newspaper (which didn’t get published). This lead to my interest about going through the evaluation process, which she did several times, due to my chickening out. Don was the one who started the process of new digital hearing aids with me, until he was completely booked for the rest of the quarter, and I saw Mandy instead. There were some other staff that I didn’t know, but knew who I was, after Catherine mentioned that I was the writer of this blog. I felt strangely like a mini-celebrity.

After exchanging greetings, Catherine told me that she “just had to say this to me…Mango”. That lead me to do a fake walking out the door in protest.

The dirty little secret that everybody doesn’t know is that I had a mango smoothie for lunch today, and bought mango fruit the other day for a snack.

I was asked different questions from the audiologists about the CI, and Mandy appeared from her office in the middle of it, and I was excited to see her. I didn’t get to finish answering all the questions, as Karen came along, and it was time for my therapy.

Karen and Mandy have worked out a plan of therapy for me, in which I do speech (and listening if necessary) with her one time a week (due to schedule conflicts), and see Mandy 2x a week for listening therapy. It has been so long since I last saw Karen, either spring or fall 2003, so we had to do new testing for me.

We started off with going through the battery of speech tests: Fisher-Logemann, Rainbow passage, Clarke Sentences, and a 2.5 minute free speech recording. All of these tests were recorded into a computer, where they will be listened to by a professional familiar with deaf speech, and a person not familiar with deaf speech, and scored. Next week we will get started on actual therapy.

I talk extremely well, but my biggest challenge is that I talk too fast! I also tend to drop some sounds in speech, out of habit/laziness, and sometimes use “stop” signs in speech instead of flowing continuously.

Regarding the dizziness, I had another bout this morning, leading me to trip over a box that I have yet to unpack and lose part of my poor toenail in the process. At the suggestion of Mandy and Catherine, I called Dr. M’s office this afternoon to follow up. Dr. M said that the dizziness is sometimes brought on by a change in altitude, and should subside soon.

 

The final session for summer 2006 – saying goodbye Tuesday, August 29, 2006

Today it really hits me that I’m leaving and no longer working with Megan, Kim, or Susan (for a long time). I had my last therapy session with Susan, until Nov/Dec., if not till summer 2007. And I was just starting to get comfortable and settled in too.

Susan said she was going to be sure to tell Karen to pick on me about Mango. I already beat Susan to it, by telling Mandy and Karen to beware of certain people suggesting mango for a therapy word!

Today, we did the usual round of sentences and words where I looked at the paper, and told her which one it was. Doing pretty well with it, but it’s not real life. Then a new test for me! Category/Keyword, open set. We did entertainment for the category, and several different keywords (whatever was given related to entertainment (i.e. emmys – “did you watch the emmys on sunday night?”)). She would tell me that she was going to say a sentence related to entertainment, using one keyword. I had to repeat it back what I heard her say and where it was in the sentence. I was getting 60% for my first time, and able to repeat it back. The brain is a funny thing…you hear something, and you know it’s not right, so your language system kicks in to make it right. It’s amazing.

Pretty good for 3 weeks. But I still have a long way to go, and for the other test, have trouble differentiating between similar sounding words, and if they sound the same or are different. That was my reality check for the week, because I did badly on that one.

So yeah, Allison, you’re doing amazing with the CI for three weeks’ time, but this is just the beginning of a long hard road ahead. As Coach Seaquist used to say…“keep on swimming.”

Next Stop On The Tour: Mandy, Karen, and a whole new world of sounds, people and experiences. I fly out tomorrow. Oh boyee.

 

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.

 

I now officially love my cochlear implant. Today’s Adventures In Sound! Wednesday, August 9, 2006

As of 9:22 pm Mountain Standard Time, I now officially LOVE my cochlear implant.

I’ve had it on for almost all day, except for about an hour where I took it off to let my scalp rest for a little bit. The “pulsing/shocking feeling” that I had been complaining about in my last entry doesn’t bother me as much anymore, and is almost at the point of being non-existent. Instead it has been replaced with a “crackling” sound. I think Program 1 is my favorite, and I’ve got it turned up all the way to max, because I’ve outgrown the limits already.

Tomorrow I meet with Megan again to do my 3rd Mapping session in 4 days! And Susan (the speech therapist) emailed me today, and I am now going in for a post-activation evaluation and starting therapy next week because I can do it now.

This morning I came downstairs to get some juice. I pulled the glass out of the cupboard and set it down gently on the granite counter, and I could distinctly hear it go “clink”. Mom was happy, because that means I will stop banging her poor dishes onto the counter!

After that, I ventured out to the public library and got some audio books and CDs to practice listening with. After that, I came home and listened to music all day. When I first started listening to the music (I got tired of NPR for today), I swear that everything sounds like TECHNO! At one point I heard this noise that was different from the music, and realized it was the phone ringing, and right after that, I heard the clock started chiming at the hour! And then there was the clacking of the keyboard keys and the clicking of the mouse buttons. That was VERY exciting.

Throughout the day, I kept telling Jen that the song that just came on sounded like 2 Unlimited’s “Get Ready 4 This”, and that I was positive it was the song. (wrong on all counts!) I finally gave up because I was starting to be able to tell the differences between songs. I also tried to listen to Harry Potter and the Chamber of Secrets, but I was having a hard time hearing the words, because I need more clarity/definition in sound. I was also holding Benny today, and he was complaining (quietly) and I was able to hear the quiet meows as compared to yesterday’s loud meows.

When Mom came home from work, I told her about thinking that every song was sounding like the beginning of “Get Ready 4 This”. She wasn’t sure which song I was talking about, so I attempted to imitate the beat and tone that it sounds like. And then I put the song on for her, and she was surprised, because my imitation was very close! I’ve never been able to do that. I think this will help me tremendously with my piano playing and any other instrument that I decide to play.

While we were talking and eating dinner, I heard this sound coming from the other room. I asked mom, what’s that sound? She wasn’t sure, so I was tapping in rhythm with the sound, and it turns out it was the dog drinking water from her bowl! I couldn’t hear that with my hearing aids either! *lap lap lap lap lap* Mom looked so happy and like she was about to cry!

I’m listening to music again, with my favorite songs (250+) on shuffle. I was able to get 3 out of 5 random songs (in a row) correctly identified by artist and title! Some of the songs I was able to identify by the words (Jimmy Buffett’s “Apocalypso”)! Others I was able to identify by the beat and some of the melodies that I can hear. I was a little disappointed when I couldn’t recognize Groove Armada’s “But I Feel Good (Audio Bullys Dr. Feelgood Mix)” (mp3) because that’s one of my most favorite songs.

My other favorite sound discovery for today is the sound that toilet paper makes when you wipe yourself. I didn’t know the paper rustled that much!

Other than that, Jen is in trouble with me because she is on a mission to collect and find magnets that will stick to my head. She’s obsessed with the thoughts of magnets (other than my CI magnet) having the potential to stick to my head. ^.^ I didn’t even think about that till she brought it up! :-p

I’m amused and grateful that my friends are taking such an interest in this whole thing. Not only that, they are willing to help me in whatever way they can. I can’t even REMEMBER the last time that I’ve had hearing friends actually take the initiative to learn more about it on their own, without me having to explain it all to them.

And I got the best email from Dad today about this whole thing, which made me cry. Dad, I love you very much and thank you for what you said.

It wasn’t till 10:09 pm that I finally identified “Get Ready 4 This” correctly! I knew it as soon as it came on!

The Discovered Sounds List
Aug 7, 06 – Mom + Dad’s Voice
Aug 8, 06 – Benny’s (cat) Loud Mrrreeow/”talking”
Aug 9, 06 – Glass Clinking On Counter
Aug 9, 06 – Clock Chiming at Hour in Office
Aug 9, 06 – Phone Ringing
Aug 9, 06 – Keyboard clacking/Mouse clicking
Aug 9, 06 – Elizabeth lapping water in her bowl (from the other room!)
Aug 9, 06 – Hearing myself whistle
Aug 9, 06 – Starting to recognize some favorite songs
Aug 9, 06 – The sound toilet paper makes when you wipe yourself

Songs That I Recognized Today (When I First Started Making The List)
* the first 3 were out of 5 in a row
* All-4-One – “The Bomb”
* Green Day – “Burnout”
* Everclear – “I Will Buy You A New Life” (words)
Jimmy Buffett – “Apocalypso” (words)
S Club 7 – “It’s A Feel Good Thing”
Rage Against The Machine – “Bulls On Parade” (the trigger point for me loving the CI due to the intricacies in some of the notes)
Bowling For Soup – “The Bitch Song”
Van Halen – “Jump”
Sublime – “What I Got”
The Bloodhound Gang – “I Hope You Die”
Vengaboys – “We Like To Party”
Rick Astley – “Never Gonna Give You Up”
Cherry Poppin’ Daddies – “Zoot Suit Riot” (words)
KC And The Sunshine Band – “Get Down Tonight”
The Prodigy – “Firestarter”
Smashmouth – “All Star”
Lenny Kravitz – “Black Velveteen”
Queens Of The Stone Age – “Feel Good Hit Of The Summer”
Boz Scaggs – “Love Me Tomorrow”
Foo Fighters – “Everlong”
*NSYNC – “Bye Bye Bye”
Vitamin C – “The Itch”
The Refreshments – “Down Together”
Jewel – “Who Will Save Your Soul?” (words)
Lou Bega – “Mambo No. 5 (A Little Bit Of…)

 

Evaluation with the Speech Therapist Friday, June 23, 2006

Today I met with Susan, the hospital’s speech therapist, to undergo the speech part of the CI evaluation.

When we arrived at the hospital, there was a crime scene bus, a police car, and the coroner’s van parked in the circle outside the main entrance. I was wondering what was going on, and was teasing my mom that it was like a episode of Law&Order. I was nervous going in there, because I had never been to that hospital (Desert Sam) and the directions on where to meet her were complicated. The other part of it was that my experience with speech therapists in the past has usually not been good (save for a few gems), so I was dreading going to the appointment. Mom reassured me that she sounded very nice over the phone, but experience leads me to be distrustful.

Susan was waiting for me at the Physical Therapy admissions counter, and after standing there for a few moments waiting to register, she turned to me and asked if I was meeting with her. She also had a graduate student “shadowing” her today, who also did some testing. We did the usual battery of speech-stuff, and I did extremely well on all of them, and they both were impressed with how well I have done with my hearing loss.

The speech tests help determine how well I can speak and understand words. The results helped her to figure where we would need to start in therapy, post-surgically. I won’t have to start at the very bottom of the ladder, but will be more towards intermediate training, because of my comprehension.

The whole experience left me feeling positive, because she was absolutely awesome. I am so happy that I can have her (and Karen) as my therapists, and now I have one for home and school. It’s a relief to know I have a team set up in both states, ready to deal with me after the surgery and help me learn to make the most of my implant.