The Bionic Sound Project

this girl’s journey to sound

It’s All About The Babies (And Hearing Loss) Saturday, November 4, 2006

Yesterday morning, I got my new replacement sidekick (yes, less than 2 months after receiving the brand new one, it was a major software glitch that caused it to crash constantly after we changed to Daylight Savings Time).

As soon as I powered it up, I got a message from Chris, a good friend of mine from my 1st year of college, who is also an ex-boyfriend of mine. He suprised me, as he and his wife are here in town for a wedding, and staying with another friend, Todd. The three of us were part of the same group of friends freshman year (Todd, Chris and I). They all wanted to get together for lunch, so we ate at the Commons, and I was surprised by the news that Chris and Pennie are 51/2 months pregnant, which is so exciting for them. It was so much fun reuniting with everyone, but I had to cut it short due to my listening therapy session with Mandy.

Mandy has decided that the activities in the book from AB is too easy for me, so she’s trying to make them more challenging for me. I’m having trouble with some words that I used to be able to get correctly before, are now sounding “off”. The Nucleus Hear We Go book, some of the activities are difficult because they deal with things that people in Australia would know about.

Next week, as it’s the last week of the quarter, she is going to do a sound test, to determine how much I am hearing now with the CI, as compared to when Megan did the test 1 week after activation. We are also going to go in and make a new MAP for the CI, and this time she thinks that we will be able to increase the threshold for sound for me, giving me access to a wider variety of soft and loud sounds at different frequencies. This may help in making sound being more “natural” for me, and on the same page as the HA.

A few hours after that, I met up with my friends again, to have a surprise birthday dinner for Chris at TGIFriday’s. I caught up with some other friends that were there. And then there was curiosity about the CI, as the interest in getting one is growing among deaf people. The funny part was that one of them used to work with my current audiologist, Mandy, when she got her CI 3 years ago. We were talking about her experience, and where she was at now with the CI. It’s always interesting for me to hear about other people’s progress and how the CI has or has not worked for them. I always feel bad for those who say the CI has not worked for them, or that they don’t like it for various reasons, and wish it wasn’t the case for them.

Afterwards, we headed back to Todd’s apartment, where we played a very fun game of Monopoly and chatted. At one point, there was a loud exclaimation/outburst from everybody, and the baby gave Pennie a good swift kick. It was the first time that the baby had kicked in response to a very loud sound, and she told us all that. That made me curious, because I don’t know that many deaf women who have been pregnant, as my peers are all starting to get married and/or starting families.

I called up my mom today and asked her if I ever gave her a good swift kick in response to loud noises when she was pregnant with me, and she said no. That was one of the first indicators that she had that there was something up with my hearing after I was born. The only time I did respond to noise and kick/fuss was when the Phoenix Suns were vying for the playoffs back in 1981-1982.

I just thought it was funny, as I’m a Phoenix Suns fan, all the way! Got the original license plate from the 1993 playoffs, with the old Suns logo, on my car.

But yeah, now I know that when I do get pregnant (in many many years down the road – don’t worry mom, dad, and linda, there aren’t any grandkids coming your way), that’s one of the things I’m going to be watching out for during pregnancy, is the response to environmental sounds.

It’s fascinating to me, as Pennie and I were both born deaf, with unknown reason for deafness. Chris was born hearing, lost it to sickness. Most people with a hearing loss, usually lose it due to being sick. In combination with that, considering the guys I have dated, I probably will marry a guy who was born hearing.

That’s one of the things I wonder about for the future, what’s going to happen when I do have kids. Will they be hearing or will they be deaf? Is my deafness genetic or just a random freak occurence?

I do remember the time a few months after my niece was born, my half-sister called my mom because she was worried that my niece might have a hearing loss. My niece wasn’t responding to sounds, and I remember being scared for my sister and for my niece, because it’s a hard road to travel, trying to raise a child with a hearing loss to survive in the hearing world, and that it would mean that there was a genetic component to my hearing loss, and that I would have to think about my own kids, when I did have them.

At the same time, there was a tiny part of me that was secretly happy (as much as I hate to admit it) at the prospect that there could be another family member with a hearing loss, because face it, it is lonely sometimes being the minority, and it is nice to have another person who is similar to you. I love my family very much, but there ARE times when I feel very left out (and sometimes have nothing to do with hearing loss, but rather being too old for the younger kids, but being too young for the adults). I’m happy to report that my niece is perfectly fine, with normal hearing, and so is my nephew, who came two years later.

No matter what happens, I’ll be prepared for it, after growing up deaf, and so will my family. Hearing or deaf, the kid will be special, period.

If my child is deaf, I’ll travel down that road when I get to it, in terms of what route I will pursue. Who knows what the technology and educational methods will be in 5 to 15 years? There’s many factors to consider, such as city that I live in, the services available, job situation (my mom quit hers to stay home and do therapy with me, while dad worked), finances, etc.

For now, I’m happily single, very independent, living my own life and enjoying it.

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Mango…The Word That Just Won’t Die Monday, August 28, 2006

The word that just won’t die…MANGO.

Megan said she was going to send me a care package of mangoes to me at school. When I come back in a few months, I’m bringing her a kumquat just because. Maybe an onion. But it better not be a combo of mango and fennel. It’s a good thing we don’t have our own cooking show on the Food Network.

Had #7 today…spent close to 4 hours in there. First I had to see Dr. M. for my checkup. The blood is gone from my middle ear and my eardrum is not purple anymore, but it’s still swollen. He had Megan do a test to see if I have any residual hearing, and I don’t, but it’s probably still too soon to tell.

After that, instead of being in the auditory room, Megan set up in the same exam room that I was in the day I got activated. She had both computers, the programming one, and the Sound and Beyond one. She would tinker with my CI while I was playing with the program and listening to words, telling her what sounded funny as I was going through the exercises, but the picture of the rabbit in the food category is a terrible picture! I was doing pretty well, scoring between 85 to 96 percent with the CI alone. However, I started having trouble with some familiar words, such as cat. And while comparing programs, she would say “how does this sound? what time is it? mango.” just to rub it in because I hate that word!

At one point today, Megan was on a mission to find out just how much I am hearing with my CI, and help me see that the CI is working better than the HA and I’m hearing way more than I think I am.

88% with CI alone.
96% with CI and HA.
80 or 84% with HA alone.

Course, I was cheating because I could not hear the laptop very well with the HA, and had my head right next to the keyboard at intervals so I could hear it, until Megan made me sit up and stay put. :-p

The other thing that has been an issue with the CI is that it sounds good at first, and after a little while, it starts to sound bad (even while I’m still hooked up to the computer). Over a few days, I go from being able to hear voices within a room, to only being able to hear within one to two feet around me. I always thought it was because it was because my neuro-adaptation was fast, but that might not be the case due to what AB said. Kim said they had a patient like that, but that was a long time ago. We also experimented with the pulse width, and at times it would sound awesome, almost like the hearing aid, but there would be a bit of an echo. It’s very frustrating tinkering with the CI, because when one thing sounds good, another thing sounds bad. And there are times I don’t know how to explain it. Sometimes I feel like I’m hearing in my left ear as well, because the sound from the CI seems to “translate” to my left ear.

Megan got on the phone with AB and figured out a plan of troubleshooting. She also taught me how to put the magnet on correctly, in a way that doesn’t twist the wire. We ended up having to go into the bathroom to do that so I could see how she was doing it, and walked past a family that was there for a candidate consultation so it was a little funny. I could also hear people speaking, but couldn’t understand them, and Megan said it was because they were speaking Italian.

The Problem Of Missing/Changing Sound – Solution
1. Make sure wire for magnet is secure, and placed on head properly.
2. Change out T-Mic (possible moisture?)
3. Change Battery (possible low power?)
4. Dehumidify it (and I need to stay on top of making sure the crystals are yellow, cuz the moisture from the environment affects it too.)

I am still not used to the concept of older people getting CIs. My experience has been that younger people and children have CIs, but never people who are in their 40s or older. I’ve always seen them with little ITE hearing aids, or just deaf, while us kids have had the BTEs or the CIs. I’m going to have to get used to it.

Kim had to remind me today that I’m doing extremely well with my CI, and that I need to be patient. She reminds me of and sounds so much like mom, with the “no nonsense from you” talk, and knows just exactly how to get me to shush and stop to think, just like mom does. “How long has it been?” “And you’re getting a score of what?”…”3 weeks…and 96%.” “That’s pretty good.” So here it goes…..I’ve got three programs to experiment with for a week and a half to two weeks. It’s going to be a challenge to leave my CI alone and learn to appreciate it without any adjustments in that time period. Patience is NOT one of my virtues as Dad has reminded me.

Kim also told me that her patients seem to prefer Verizon for their cell phones, so that’s something to keep in mind. I’m hoping that my phone can make it until the full-QWERTY version of the Blackberry Pearl comes out in Q1 2007.

In NY news, I talked to Karen, and she’s going to talk to Mandy about how they can best work with me when I return. I’m going to miss seeing Megan, Kim, and Dr. M, but I will see them in a few months. I really don’t like saying goodbye, especially to people that I like working with. Sometimes it’s nice to finish what you started, with the people you began it with. And this is why being bi-coastal stinks…I can’t have the best of both worlds in one place. I always have to say goodbye to a group of people in each place and adapt to a new environment and time zone two times a year, and I hate it (especially when I have to leave my family).

Today’s Sounds List
– Recognizing clapping at a restaurant
– Mom coming up behind me at noisy restaurant and saying “Sweetie”, and me not paying attention

That was my first recognized word on its own, where I’m not paying attention, and able to understand it without having to think about it.

 

Day 20 – Stay On My Ear! Sunday, August 27, 2006

Today I saw my stepmom and dad for the first time since I got the CI activated. I showed my stepmom all the stuff I got for the CI and explained everything to them. They also both saw my audiogram results from one week post-activation, and were impressed. My dad was especially pleased that I could understand the word jalapeno. 😀

We also looked at glasses for me today, and it was challenging to find a pair of glasses frames that didn’t press on the scar-area of my incision (since it still hurts, especially the little bulging spot), or cause my CI to fall off of my ear. The other criteria I had for my glasses was that they had to be super-lightweight, especially since the CI is already “heavy” on my ear. I also wanted a stylish pair of lime-green/bright-green glasses, because I’m all about the lime green. 😀 I will primarily be wearing my contact lenses, because I don’t like wearing glasses (especially in the extreme cold/snowy weather)! All I have to get is the prescription, which the doctor has to fax in. I’ll be happy to have glasses instead of sunglasses to watch TV before bed, because my glasses broke the night before I had my second surgery.

I got to play with some cell phones while we were out, and must link to them for reference: Motorola Q, LG V, Blackberry 8700g, and the XV6700. The representative seemed to suggest that the XV6700 would be the best one in terms of phone/email/music. My stepmom cautions against the SureType feature with the Blackberries, since they never get what you’re typing correct, and that’s what the upcoming Pearl has. -.-

I wish I could hear more with the CI, because everything sounds so quiet/muffled right now, but in certain situations it sounds great. If somebody’s up close to me, like within a foot, I can understand/hear the full timbre of what they’re saying. Otherwise, I’m like “What? What did you say? I can’t hear you.” At times, it makes me feel like that my hearing with the CI is worse than it was with the hearing aid. And today, I was having problems with the HA again. Grrr.

We also watched the Emmys, and it was frustrating because I could understand/lipread what they were saying, and the captions were several sentences behind, so I wasn’t getting that confirmation that what I was hearing was correct. I eventually gave up trying to read along and just read the newspaper, looking up occassionally.

Now I wonder what it’s going to be like when I go back to school and see the interpreter for all my classes. How am I going to reconcile what I am hearing with what the interpreter is signing/mouthing? The TV/captioning already drives me crazy. Oh wait, I’m supposed to be *LISTENING* with the CI. Silly me. Gonna have to work HARD to get to that point. Everything is still so visual for me, and I really need to break that habit and let my brain do the listening.

Bedtime. In the morning, a checkup with Dr. M for my surgical incision, and then Megan after that. I’m going to play with that program as long as she will let me. So much to do before I leave Wednesday. Aiiieee. I’m really not ready to end my summer break, as the entire summer has been all medical, not much fun/relaxation. But that’s real life.

Today’s Sounds List As Per Susan’s Request
– Hearing people drop dishes in the sink in the kitchen at the restaurant.
– Ice cubes clattering into glasses in the kitchen at the restaurant.
– Waitress dropping metal tray on floor.
– Baby at table behind us banging hands/silverware on table.
– Silverware/glassware clinking at restaurant.
– guy tripping over his feet/falling flat on his face outside of Best Buy and in front of three oncoming cars. everything literally STOPPED, all I heard was a “thump” as I was talking to my stepmom.

 

A DNR Order is Needed for the T-Mobile Sidekick Wednesday, August 23, 2006

I spent the night at the emergency room with my soon-to-be-90-years-old grandpa. While in the middle of a phone call to my mom through the relay, my Sidekick decided to stop working.

The radio GPRS “detached” from the phone, and would not reattach, even with restarting and other troubleshooting. I could not connect to the internet, much less make a phone call through relay on AIM. I have had ongoing problems with the sidekick for the last two months, if not the last 4 years (30+ replacements within warranty periods). Sidekick b/w, Sidekick color, SKII, and now the new Sidekick 3…each one has had so many problems and negatives to it, that I have yet to hear enough positives to outweigh it. The new one isn’t any better.

To make a long story short, I had to retrieve my mom’s ancient, bare-bones cell phone from her car, because I had her car with me, use the speakerphone, and try my best to have a conversation with her, because the CI is not compatible with the phone, but I can hear with the speakerphone. I’m amazed that this simple piece of technology is so reliable and works fantastically, compared to this high-priced, overhyped gadget that is nothing but trouble.

The conclusion to all of this is that I am not going to get the Sidekick 3. I’ve started doing some research into other smartphones/PDAs, because I am not at the level where I am ready to understand speech and have a conversation on the phone. But as far as I am concerned, the Sidekick is never going to be a reliable phone, no matter how many incarnations they make of it.

Basically, this whole situation just deepens my resolve to be able to hear and understand speech. This is what the CI is for. I want to be able to pick up a phone ANYWHERE and be able to have a phone conversation with anybody, without having to rely on a keyboard to type my words out and get my message across. I don’t want to rely on other people to have to “voice” my message or “type” it for me onto a screen. I want to express myself and I want to hear others express themselves.

I want independence.

P.S. I think the Blackberry Pearl will be my choice, as Blackberries have been totally awesome (spoken as a previous user of the RIM 850, which I had first, before the SK), not to mention reliable due to their primary audience of government and major corporate clients. It comes out on Sept. 18th on T-Mobile, but a full-QWERTY keyboard is not expected until Q1 2007. Reliability, same features as SK3, and a cost of $199 vs $350 for the sidekick and its unreliability? I think I’d take the crackberry, only if it is CI-compatible.

P.P.S. new sound: listening to the college freshman almost continually vomit from drinking too much, as the paramedics were holding his head outside the room my grandpa was in. yay first week of school parties.

 

The prevalence of CIs over Hearing Aids. Wednesday, August 2, 2006

This past weekend was interesting. I went to Deaf Professional Happy Hour on Friday night to meet up with some old friends from school, as well as other people who live here in this area. Saturday was a big pool party that was a combination fundraiser for the traveling deaf softball team and a goodbye party for two deaf girls that were going off to grad school.

The most interesting part of it was that in the group of people that I was talking to, everybody but two had cochlear implants. It’s amazing how many people have been getting implanted, especially within the last 3 years. We were all trading implant stories, and so far, I’m the only one who had a bad time with the surgery/had to have it twice.

I remember the days when meeting a person who had a cochlear implant was something that was somewhat rare and unheard of. In fact, the first time I had a friend with a cochlear implant was my freshman year of college. In 1997, I worked at the oral deaf school that I attended when I was a little girl. I was a counselor for their summer camp program for deaf kids and their siblings. It was amazing, the number of them that were implanted and doing extremely well with their implants, as compared to my generation (at the time) who were still hearing-aided.

The other funny thing was that when I met up with P.J. on Friday night, we found out we had the same doctor, and were comparing notes. He asked me if i was “that girl who had a problem with her implant and had to have surgery twice” and I asked him if he was the “young man who reacted strongly to being activated due to one sound he had never heard before in his life”. The deaf community is way too small, with all of us going to the same doctor, haha.

P.J. was telling me about his post-activation experiences, and all the sounds he was hearing at the bar (that I couldn’t hear/pick out with my new digital hearing aid), and I was very impressed. He also told me a funny post-activation story about when he came home, and he heard this “ding ding ding” coming from around the house, and stopped. It kept coming and going, and driving him crazy. Finally he asked his boyfriend what that noise was, and his boyfriend told him that it was the bell on the cat’s collar. P.J. said that he wanted the bell removed from the cat immediately. It was funny how he told the story.

Found another website that is geared towards wireless accessibility. Sent an email off to Nokia to find out about their phones and the difference between HA+CI compatibility. It’s frustrating because some of the websites, like Motorola, have no information on accessibility, nor can I send them an email without being a Motorola customer.

 

Post-Surgical Tinnitus, playing the piano, and Music

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.

 

Saline Solution, Phones, and Activation Saturday, July 22, 2006

Losing 7 pounds in one day is really weird. Gotta love IV saline solution puffing you up like a balloon, and then getting it all out of your body with frequent trips to the bathroom. My mom is nagging me because she’s worried about me screwing up my electrolytes + potassium levels.

I’m about to give up on my phone, because I’ve sent text messages and am not getting responses back from people. Some said they sent me messages when I was in the hospital, and I have yet to receive them. I kind of wish I knew if I can use a real phone or not, so I could decide what to do with this phone. At least I know the email is consistent.

I’m excited about my implant activation date, and have already started a countdown to it. That is, only if my doctor says yes. I have to see him for surgical follow-up on Wednesday, and then again just right before I turn my implant on. I’m still on track for my activation date, despite having surgery twice, which is a big yay for me.