The Bionic Sound Project

this girl’s journey to sound

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.

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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?

 

Are You Deaf Or Hearing? Monday, October 23, 2006

“I hate it when teachers and students see me as this dud that can’t go anywhere without an aid [sic]. I hate broadcasting my deafness to the entire class by having another human being there to assist me. I hate being reminded of my deafness every day.” – a livejournal friend of mine, Chiara

I hear ya, Chiara. I do. Like her, I want independence and not have my deafness be the thing that defines me. I’ve always been a strong supporter of doing things for yourself, taking initative, and going after what you want, and not letting things stop you from achieving what you want. My mom raised me this way, as this was her goal for me in life, to use my own voice.

This is one reason why I don’t understand why deaf people would rather rely on interpreters than talking and listening for themselves. I know that some can’t for different reasons, but there are many that I know that are capable, but choose to be “Deaf”. I can’t fathom that. I want to be able to speak for myself, communicating my own thoughts with my own voice, and hear things for myself.

But I’m not at that point yet. The CI doesn’t give me that ability, and there’s no guarantee that it ever will. Maybe if I was implanted as a baby, when the brain is much more plastic.

Anyways, as a result, today was one of those days where being deaf was thrown into my face. It’s my favorite time of the quarter, registration for the next one. *sarcasm*

The problem lies in the fact that there are a limited number of seats for deaf students reserved in specific sections of a course. I haven’t been able to register due to other issues that are currently being resolved.

But I am now locked out of all the available supported sections for that course, (except for one, which conflicts with every section of my other required class). It’s frustrating for me, because my teacher told me that she absolutely will not add an extra student to the lab class (which I understand the reasons for). Student Services won’t boot somebody from the class so I can have a seat in the supported section. And Support Services does not want to support another section.

So now I’m trying to figure out how I am going to get into this required class and have support. Frustrating, huh?

It just further deepens my desire to become independent and hear well enough on my own to function in a classroom setting. I’m already doing that with my other class, forgoing support, and going with C-Print, so I can practice listening.

So that, with some other things going on related to friends/social life, does not make for a happy me. I feel trapped.

I miss being around people like me or who understand deafness, and are similar in age/maturity to me. I want more of those friends, both inside and out of school. I miss my big sister, because we were a support for each other. As blonde as you are, I still love you and how we “got” each other immediately. 5 years apart has been too long. A few minutes in 3 years is not enough. But it feels like a lifetime with you, and all is right again, in that brief passing.

Sometimes navigating the hearing world by yourself is scary, and at other times, tiring and frustrating. Other times it is absolutely exhilarating and fun!

“What I wouldn’t give to find a soulmate
Someone else to catch this drift
And what wouldn’t I give to meet a kindred”

Alanis Morissette -“All I Really Want”

 

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.

 

Now What Has Malfunctioned? (and Adventures in Sinusland) Tuesday, September 26, 2006

Part #: CI-5304-313

HR90K HP Beige Kevlar

Malfunctioning product must be returned to Advanced Bionics within 28 days of replacement product shipment or it will be invoiced.

I got this email from AB’s product team and my first thought was “WHAT? What’s malfunctioning now?” (and freaking out, because after the problem with the surgery, I figured that would be the only hiccup in the road, and it has been smooth sailing since.)

I was so confused, because I (or Mandy) haven’t talked to AB about any malfunctioning parts with my CI. I don’t know if Megan has done anything, but I’m sure she would have told one of us if she had been in contact with AB.

Needless to say, I was bewildered upon receipt of the email (and had almost marked it as spam mail, but something told me to read it). I tried to call and find out what was going on, but it’s past normal operating hours, so it will have to wait till tomorrow.

Because I have a burning desire to know instantaneously, I googled it and the closest part # I can get for that is the Auria headpiece. But there’s no mention of CI-5304-313 anywhere on the website, nor does it match with any of my other accessories.

Examining the invoice closer, I’m wondering if this “HP” is the acronym for the new Harmony Processor, which is the 120-channel processor. And with KEVLAR? Does this mean I’m going to have a bulletproof ear? (remember the mythbusters episode where they tested the stopping power bullets going through everyday objects like a deck of cards, a book, etc.?)

According to the speculation and rumors from professionals who are close to the Harmony processors, and from AB’s releases, it isn’t supposed to come out until at least November.

But if that is the case, AWESOME. And then I can pester Mandy until I get my CI to sound perfect with the music!

Unfortunately, it’s being shipped to my house instead of to me at school. Drat. *on pins and needles to find out*

Jen A. came with me to see the ear doc this afternoon (and is the first friend that has come along to anything related to the CI, so yay Jen!) Dr. D turned out to be the same doctor who said that “i think you will put on the implant and look back at digital hearing aids and wonder why you didn’t get it sooner”. It was great seeing again, as I’ve only met him once, and being able to say “look! here I am! I did it!”. I was amused because Mandy introduced me to him as “my prize student”.

Basically, Dr. D says instead of sinus problems, I could be having a problem with my jaw, leading to facial pain with swollen sinuses from allergies. Common medical thinking is facial pain+swollen sinuses = sinusitis, treated with antibiotics.

He also mentioned that my “off-balance/dizziness” can be a result of my jaw being asymmetrical (which was a problem when I had braces, and was supposed to be corrected). The dizziness just happens to be aggravated by the CI, and/or being sick, stressed, or not getting enough sleep. But overall, my scar and everything looks good.

*mind-boggle* I learn something new every day, which defies conventional thinking.

And today, we did a balloon-popping demo in class. I couldn’t hear it with the CI, but my hearing aid did.

 

being sick sucks

So, not even 2 months after having the 2nd surgery for the CI, I now have been exposed to some kind of viral flu-like sickness that has been spreading like wildfire, so I get the lovely sweats and chills. But I’m technically not “sick” since I don’t have a fever (taking my temp via mouth has NEVER worked on me).

So, the only physical symptoms I have are on the right side of my head. I have a swollen right sinus, and my eardrum is “sucked back” instead of bulging outwards from the pressure in my head. I have a headache around my ear/the front of my head/face. As for blowing your nose, you think they tell you not to do it after surgery, I now wouldn’t recommend it 2 months later.

In addition to all that loveliness, the dizziness is back…WITH the rushing/roaring noise I haven’t heard in more than a month.
Joy. I just love being sick, and being sent home from class.

Mandy and I didn’t do much today, but she narrowed down where I need to work on listening. So, P, B, G, and K, along with the vowels, is for listening practice. I do have to say I was amused when I thought the combo was “pee-yew” and didn’t want to say it out loud.

There’s nothing like a steaming cup of Tazo Passion Tea to soothe you. After that’s done, I’m off to attack my head with the Neti Pot and go to bed. Hopefully tomorrow I will be all better. The sickness needs to die.

 

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.