The Bionic Sound Project

this girl’s journey to sound

Heart-Stopping Moments Friday, April 3, 2009

Had my appointment with Catherine today.  And we came up with a plan of action.

  1. Borrow the battery from them, to see if it reduces the itching/redness, and if it’s my batteries that are causing the problem.
  2. If that doesn’t work, try out a body processor.

So that’s where we started.  We went into the CI booth, plugged me into the computer, with the intention of changing my MAPs because I cannot handle the intensity of the old MAPs after a year of inactivity.

So here I am, hooked up to the computer, watching the screen, and the first thing I see is red over the internal part.  Everything was recognized and green, except for the internal implant.  Checked it again, made sure everything was connected properly.  No luck.

It was time to call Advanced Bionics for troubleshooting.  Catherine found the “dummy” internal parts, and tried it with their processor.  Everything worked.

I held my breath.  This was not looking good.

We took my processor and attached it to to the dummy.  It worked.

I started to cry.

Crying because my internal processor wasn’t working.  Crying because at the thought of having to go through a third surgery in less than 3 years.  Crying because maybe that’s why my CI wasn’t working back in January.

Catherine picked it up to take it off, and then the computer recognized the internal part!  It was a loose wire.

Talk about a heart-stopping moment.  A huge sigh of relief.

So now I’m sent home with MAPs that are more than 100 points below where I was, and with my IDR reduced to 60 from 75.  One has Fidelity 120,and the other doesn’t.  I’m going to try both, as Mandy said in her last notes that I may do better without Fidelity 120.

30 minutes into wearing the CI, my ear was red and itching, and Catherine confirmed it by seeing that there was a red spot where the CI was.  So now it’s time to find a solution.

It’s amazing how quick the brain adapts to using a CI after not wearing it for so long.  I’m missing it…..and feel like I’m re-experiencing activation day all over again…in the sense that I’m discovering sounds that my hearing aid definitely did not pick up on.

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Frustrations With Being Deaf And At Work Wednesday, July 25, 2007

Mixed reaction to the new walkies we have at work. It works with my headphones (I haven’t tried the DirectConnect cable yet, but I know it will work). The issue is that I need a program that will work with it, and still hear ambient noise.

Switching back and forth between programs is a great way to drain out the battery, plus there’s an 8-second delay when switching programs. It should be better with the harmony due to the built in t-coil and extended battery life.

My frustration spilled over into the rest of the day, because once again, I was reminded how much I’m in-between worlds.

It’s so frustrating to be left out of conversation while working. Everybody’s yapping away, and I have no clue what’s going on, but I just keep on working. Or they’re laughing at something funny on the walkie, but of course I don’t know what was said. I go through the same situation with my friends, even my family (except my mom) and I just Get. Tired. Of. It.

I’m tired of being deaf, but functioning “like” a hearing person. Everybody forgets that as much as I blend in, I still don’t get everything. Sometimes I wonder if it would be easier to either be completely hearing or completely deaf. And sometimes I feel like I’m being taken for granted because I work so hard at not only making it easier for myself, but for other people as well. And I don’t get the same in return.

I know it’s unrealistic to expect the world to bend to meet my needs, or that the cochlear implant will magically solve all of my problems. I was aware of this when I was going through the screening process, and it’s not even been a full year since I’ve been activated. Gotta take it one step at a time.

But yeah, I was crying when I got home and talking to my mom about my day, because she’s really the only one here at home who gets how difficult it is for me, and how frustrated I get. It’s the stupidest thing to cry about, but I couldn’t help it. I tried to explain it to one of my co’s, but it’s still hard to put it in a way that people without the background can understand.

Had my back-to-school physical on Tuesday after work, and it was the first time I had to turn down a procedure due to the CI. My doctor wanted to do an MRI on my knee, because I’ve been having off-and-on problems for the last year or so, as a result from when I broke my ankle/cracked my leg/sprained my knee 2 years ago. That was weird, because it’s the first time that’s happened where I had to speak up and say “I can’t do that.” All I had was the vision from the episode of House where the metal shot out of the body and into the MRI, breaking it, except it was the side of my head.

 

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.

 

The Obstacles Of Having Hearing Friends And Family That Love The Movies Friday, January 26, 2007

Thursday night, MK and I went to see the simultaneous ASL-Voice play at school titled Obstacles. It was a great play, really emphasized the obstacles that deaf people face in a hearing world. I haven’t been to one of those plays in a long time, but only because back then I couldn’t understand what was going on, due to being a new ASL learner. I’ll discuss the play next time, and the obstacles it talked about.

Tonight I realized that I had my own obstacles. My hearing friends. Ok, maybe not them, per se, but the things they choose to do. They want to go to the $2.00 movies tonight, and invited me to come along. But they forgot that I needed open-captioning (OC).

So, I told them that it wasn’t OC, and that they could go ahead and go without me.

I really didn’t feel like
a) going outside when the temperature currently “feels like -2” according to the weather report
b) sitting through a movie, missing the dialogue, but knowing what happens visually. It ruins the movie for you when you actually see it with captions because you already know what happens.
c) watching a movie when I would rather watch it in the convenience of my own apartment, without missing anything if I have to go to the bathroom. I also have a particularly bad habit of falling asleep during movies.

Anyway, it’s fine with me, as I’m used to not going to the movies with everybody else. A few years ago, I told my family to go ahead and go without me, when one of nieces/nephews wanted to go to the movies for their birthday, but it wasn’t OC and it was about $15. So I went home to my mom and did other stuff.

The last time I went to a non-OC movie was Harry Potter and The Goblet of Fire. I only did that because I had never been to a midnight opening of a movie, and wanted to experience it. Secondly, HP4 was my favorite book in the series (of 1-6, when’s #7 coming out?) so it would be easy to follow along, because I already knew what happened in the book. I don’t even remember what was the last non-OC move that I saw.

My friends discussed about the possibility of coming over to watch a movie, since we’re all going out to do errands in the morning together. I didn’t hear back from them until they were already at the theater. Apparently, they lost track of time, and had to leave immediately, and weren’t able to tell me what the plan was until after they got there.

Growing up, I was forced to go to the movies like every week with the other kids at my babysitter’s house. The only thing I liked about it was that I got to have all kinds of special treats at the movie, and it was nice and cool inside. It was a great relief in those days, as the summertime temperatures were ~115, and we spent the entire day in the pool, swimming and being toasted to a golden crisp by the Arizona sun, even with sunblock on.

I do remember being traumatized by movies or television that I watched as a little kid. I got so upset seeing “Don’t Tell Mom The Babysitter’s Dead” only because I didn’t understand the dialogue, and the grandma looked like/reminded me of my own grandma, who I was especially close to. There were times I would be scared, such as in Silence Of The Lambs, The Black Hole, The Neverending Story (it’s one of my favorites, now that I understand what’s going on), and Speed (ok, that one was Dad’s fault, as Mom expressly told him that I was not allowed to watch it because I was too young. I was up all night, too scared to go to sleep, and so were they).

But that’s the way it was growing up. I hated it. I was so glad when the ADA was finally passed and captioning was mandatory. For the first time in my life, I was able to participate in watching stuff with my peers and family. No longer was relegated to sitting in the corner of the room, my nose buried in a book, or making up my own storylines to match what was going onscreen.

The benefit to that is that I became exceptionally well-read and extremely creative with the stories I would come up with. And then captioning came, and I learned to read fast, devouring information quickly.

I don’t want to keep my friends and family from going to the movies, which they enjoy doing and makes them happy. My mom and Stef both said it would be great if I can understand movies with the CI, so I can go with them. I don’t know when that day will come, or if it ever will.

I want to be able to go to the movies when my family and friends want to go, without having to check and see if it’s captioned. The movie I want to see, Dreamgirls, isn’t even available in my area, OC.

But where do I draw the line between going along with being a part of a group, doing something that I really don’t want to do versus being all alone, doing something else that makes me happy? It’s a conundrum.

 

What Have I Gotten Myself Into? Thursday, January 18, 2007

Having one of those “dear god, what have I gotten myself into?” days.

Nothing like a good dose of frustration in many areas to end your day and push your emotions over the edge.

First part was great, as I had therapy with Mandy, then went off to the luncheon hosted by the Women’s Council.

Since we didn’t get to do therapy on Monday due to school being canceled because of the ice storm, I was happy to see Mandy today, even though I had talked to her over the weekend. She and Catherine reassured me that I looked fine, since I was all dressed up. They gave me the once-over and proclaimed me good to go for the luncheon. While this was going on, I found out the panel discussion is going to be either March 16th or March 30th, so I need to start thinking about what I want to say, and prepare myself for questions from the audience. Mandy had just gotten the Harmony release kit from Advanced Bionics, so it was cool rummaging through it and seeing the different items in it. It’s mostly audiologist tools, cds, and booklets. Nothing new to report, that we don’t already know. The release date is still TBA, according to the email.

After that was done, Mandy and I settled in to do word lists. I felt I wasn’t understanding words as well today, even though I could tell if the words were the same or different. I think it was because of my nervousness about the Women’s Council luncheon.

Sarah picked me up and we headed off. The two of us were invited by the members due to being honored with a scholarship. I’m grateful to the Women’s Council for selecting me as one of their scholarship recipients because it does help financially. What I didn’t expect was to stand up in front of the entire room, especially when they read the short bio of information that they collected about me. It’s not a situation one encounters often, so it was a bit nerve-wracking.

After that, there was a wonderful presentation by Bill Klingensmith, who did the Drive Project. I got some ideas for future projects from today’s presentation. Go check his website out, it’s excellent. I’m going to pick his brain one of these days, because I have more questions for him.

The biggest surprise was running into an old professor of mine and getting a hug from her. She’s one of my all-time favorite professors, and I haven’t seen her for a year and a half, so it was a real treat to see her there. I had been thinking about her the other day, and resolved to get back in touch with her. Unfortunately, it was at the end, and we were in a hurry to get back to campus, so I will have to meet with her soon.

I met several wonderful members of the Council, and I look forward to talking with some of them again. I had some good conversations with some of them about deafness and cochlear implants. Plus, the food was delicious, especially the Creme Brulee cheesecake we had. As Sarah put it “it was worth the wait”, since we both were planning to leave before one, but ended up staying for 40 more minutes.

The real trouble happened when I got back to campus an hour and 10 minutes late. Unable to find my class after searching the usual places in 7B, I sent my professor an email asking what was going on. Everybody was out shooting for the workshop, and we were meeting up again at four, but I didn’t know where. Finally, one of my classmates IMed me to tell me the details, so I was able to rejoin the group.

I had an impossible time following my teacher in the classroom we were in. His back was to us. It was dark in there. I couldn’t see my classmates. At that point, mostly out of sheer tiredness from the last few days, dry eyes, and frustration, I was biting back tears.

I’m just tired of and afraid to speak up and say “hey, I can’t understand most of what’s going on”, especially when there’s a good flow of conversation going on. I’m afraid to admit that I’m getting pretty lost lately. I understand him clearly if he stays put, there’s adequate lighting, and he’s the only one that’s speaking. But add in demonstrations, critiques, commentary, and it’s a mess.

I don’t want other people to have to make accomodations for me. I don’t want my deafness to be the first thing that they think of and see. My deafness is not what defines me. The same thing happens with my hearing friends. They forget that I’m deaf and treat me just like one of the group. But that itself is a negative because they forget and I miss out on coversation at the moment.

With the CI, one of my goals and hopes would be that it would allow me to meet hearing people on their own turf, instead of making it all about me and my needs. My teacher and I have tried different strategies, but none of them have stuck from day to day. The class does not revolve around me, especially since I am in a non-designated section for support.

I’ve been working on getting support for 2x a week, but since it wasn’t on the list of supported classes, I was told that I can’t request 4 hours a week of services. I understand that, as there are rules to be followed.

I know this is the risk that I took. I was aware of the consequences of making this decision. I just didn’t expect to hit me this hard, especially in the middle of the quarter. And I know part of it is my fault because I’m not being more aggressive in making sure I know what’s going on.

I didn’t want to fail. I still don’t. But here I am, feeling like that this whole experiment of being independent was a failure. I’m feeling more and more left out. It’s not easy for me to admit, since failure is not an option.

I just wasn’t ready. Or was I ever really ready in the first place?

 

The Wednesday/Thursday Post Sunday, December 17, 2006

Whew, I haven’t updated in several days! It has been insanely busy.

Wednesday – we had a photo workshop for class, and had to travel all over campus doing environmental portraits. My partner was Irene, and we got some good pictures (considering we only had an hour and a half to shoot), but had more fun chatting and exploring the campus. We were in the CoS building, and people were watching some of my classmates and us invade the common area with our camera equipment. I was waving to people watching from the 2nd and 3rd floor, from the A-level of the atrium while posing, hehe.

After class, I met up with Mary Karol and Catherine to plan for the CI holiday party on Friday. We went shopping, and got it all done and set for Friday. I have a greater appreciation for the amount of work that goes into it, when hosting events at school.

Thursday – we moved to a different classroom for my photo class, and had a little technical difficulties with the critique. After class was over, my teacher talked to me briefly about his concerns with me getting access to the information in class. I can understand him just fine, except for when he forgets and puts his hand over his mouth, or gestures. My major problem is in understanding what my classmates are saying, and there are moments when people don’t catch all of what I’m saying. I told him that I knew that was one of the risks in what I was doing, and it was a sacrifice I was willing to make in order to be in this class, but… I’ve been told to interrupt if I don’t understand something, but I don’t want to do that all the time, because the class is not all about me.

As a result of my teacher’s concerns, my advisor e-mailed me and asked me to come in for a meeting this week to meet with her and my teacher, plus my other advisor, in order to brainstorm ways to solve communication issues. My biggest fear is that I will be pulled out of the class or kicked out, and both of them have reassured me that it won’t happen. I’m so happy where I am, challenges and all.

The Photo School auction was that night as well. The beginning, we didn’t have an interpreter, and I wasn’t expecting one, since we didn’t have one last year. However, my photo teacher saw Chris and myself there, and took it upon himself to find out if there was one, and went ahead and started interpreting to the best of his ability. He and my advisor took turns switching off throughout the night, whenever an interpreter wasn’t there. At one point, I went to get more pizza and walked past the stage, just in time to hear them say “free photo paper” and was able to grab several packs for my friends and myself, and handed it up to them as they were on the stairs. It was amusing, being able to hear what was said, and not be oblivious to the commotion behind me as everybody dove towards the stage. Easily could have missed out due to getting pizza, but no, the CI allowed me to go home with a decent haul of film from the giveaway tosses, plus a lens cleansing cloth and a book on Avedon in the Sixties. Not bad!

 

First Time On The Salesfloor With The Cochlear Implant Tuesday, November 28, 2006

Monday was the true test of having a CI and being at work. Instead of dealing with customers one-on-one, I was out on the salesfloor, where customer interactions are random. They assigned me in seasonal, of all locations, since that’s where all the holiday stuff is located. Most of my shift was spent running back and forth between the backroom and the floor, getting things for the guests, and helping them find what they needed, while working on the pulls and restocking the shelves with Keely (about 8 carts and two tubs worth).

I understood most people, but there were a few, especially in the beginning, that I couldn’t understand, and I’m sure it was a combination of poor speech on their part and nervousness on mine.

While I was on my last break, one of the supervisors at the store sat down with me and told me that they wanted me to go out on the salesfloor with a walkie from now on. The reason for this is so that I can call for help when I need it, and they’re willing to work with me on this to find a method that works best for all of us.

I’ve come a long way from the days when they weren’t sure about putting me out on the salesfloor, preferring to keep me up front cashiering, to today, where I have been trained in several areas, and they’re willing to put me on salesfloor AND send me out there with a walkie.

However, Saturday, when I was cleaning up at the end of my cashier shift, I was reminded once again how rude and ignorant people can be. I was kneeling to get more plastic bags, and it was really busy (read: noisy), and the next thing I knew, I saw a hand jerk in front of my face, snapping their fingers at me to get my attention.

My first thought was “What the heck? Why are you snapping your fingers at me? I’m not a dog.”

The joys of educating people who don’t want to be educated, and give you a “whatever” look, when you explain that you didn’t like that, and it would be better to tap a person on the shoulder.