The Bionic Sound Project

this girl’s journey to sound

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’s The Most Important Thing A Newbie Needs To Know About The CI? Tuesday, January 23, 2007

What’s the most important things that a newbie wants/needs to know about the cochlear implant?

I ask this because the other day, K asked me if I was willing to be videotaped for a “documentary” about the cochlear implant. They have 3 or 4 faculty/staff in the tape, talking about the cochlear implant itself. Do I talk about the device itself? My surgical experience? What activation and the post-activation has been like? So many things, but what’s most important? I don’t want to scare off people through the videotape, because it’s easier to tell people in person, have that interaction, versus just talking to the lens. But I need a haircut first, ahhhhhhh!

Later in the day, I got an email from L asking if I was willing to come to her class on Thursday morning. She wants me (and the other guests) to talk about strategies for success in college. This is going to be interesting, since I’ve had my own share of failures at school, and I don’t really think I’d be the best person, but I’ve learned from my mistakes. It’s funny, some teachers prefer you make mistakes than turn in perfect work, because when it comes to the end of the quarter, this is how they are able to measure if you’ve actually learned from your mistakes and shown improvement. To me, it’s so backwards, but I’m a perfectionist.

I still need to think about the student panel that’s coming up in February or March. So much to think about, and what I want to say. This is already a busy start to 2007, and we’re not even done with January yet.

A student of Mandy’s came in to observe our listening therapy session, and I answered questions for her about the cochlear implant and more. She was really nice, and we did the AlphaCats word lists before we all had to take off for the day.

 

Phonak MicroLink MLxS FM System Monday, January 22, 2007

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

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

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

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

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

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

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

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

 

Musical Playgrounds! Sunday, January 21, 2007

This was one of the coldest weekends ever where I had to do photo shoots outside. Brr.

In my travels today, I found a yet-to-be completed playground. I ran across it last year when I was out doing photo shoots. Back then it was just a pile of dirt and construction materials, and I’m amazed at the transformation it took, since I didn’t expect it to be a playground.

This was a playground of sounds. They had this spinning metal ornament on top of the tower, that was wind-generated. The harder the wind blew, the faster the “footsteps” were. It sounded like a helicopter mixed in with a plane, but I couldn’t separate the planes flying overhead from it at first. First things first, my photo assignment before I could play.

When we came back about an hour and a half later, we stopped at the gigantic cymbal that we walked through on our way out earlier. The pathway runs through the middle of it, and it’s about 6 feet high. I hit it with my tripod, and it caused a tremendous reverberation. Unfortunately, poor Ed was right in between the two, and I was on the outside. He came out, a bit shaken. I’m sorry!

Then there were these poles built into the ground, and you could stand at one, and talk to the other like telephones…cans and a string. I had a conversation with Ed through the system, from about 30 feet away. It was loud and clear, a bit tinny though.

He also found these gigantic xylophone pipes built into the concrete walls, but we couldn’t really hear anything or figure out how to make it work. It may not be done yet.

Then I wanted to climb up the steep climbing “logs” to get to the top of platform where the slides were. Bad idea. It was icy and covered with three inches of snow, so I slid down 1/3 of the way up. Ed tried it, and was able to get to the top using the railings on the wall next to it to pull himself up. Then I came right behind him, and made it.

The next surprise was at the top. It was a rotating pole, but it had two protuding tubes, sticking about 8 feet up in the air, ending in a bowl-like shape, like a stretched out trumpet. You put your eyes to the viewer in front of you, sticking your head in between the two pipes, and you could rotate the platform to see the world like a bug does, plus hear sounds from a distance away. I couldn’t hear anything, and the visuals were just so distorted by the spray-paint some punk left on the viewfinder.

At that point, Ed was ready to leave due to the cold, so he climbed back down the wall, while I decided to take the slide (I’m such a kid at heart). It was the BEST playground slide I have ever been on in my life, and there are plenty that I’ve been on (I just can’t resist).

I was screaming through the whole slide, as I shot through it. I was launched from the end, flew across the snow and ended up getting snow up my jacket and down my pants. I was so surprised by it that I just laid there on the snow, laughing as my jeans got wetter and colder from the snow. Ed was wondering what the heck was going on, because he heard me as he was climbing down, and I was screaming, and all he saw was me shooting out across the snow.

It was so much fun that I scampered up to the top, like a mountain goat, and launched myself down the slide again, shooting right across the snow. I should have gotten a video…next time!

 

Tiger Hockey Friday, January 19, 2007

Oooh, Tiger Hockey tonight with Jen G. We picked ringside seats, first row, right next to the home team.

Sounds I Discovered
– the “thuck” of the body pads of the hockey players, when crashing into each other.
– the skrrriiiiiiiiiich of the skates across the ice, as the players did side stops (aka Snow Showers, thank you to Patrick of the Corner crew).
– the “tink” of the puck hitting the ice after the ref dropped it during a face off (or maybe it’s the sticks hitting each other, either way, it’s high-pitched).
– the following words in announcements: “and his wife Carolie”, “Tigers”.

We lost 4-3 but it was a good game that went into sudden death overtime. There’s another one tomorrow night, but I have a field trip/photo shoot all day.

 

How The Cochlear Implant Works With An Apple iPOD

Ian and Aphrodite ask how the cochlear implant works with the iPOD. When I first heard about it, I wasn’t sure how it would work either, but here it is.

Auria with T-Mic earhook, DirectConnect earhook, and cable

 

 

Auria with DirectConnect earhook, attaching the cable

 

 

Auria with DirectConnect earhook, attached to cable

 

 

The whole setup, notice the silver middle – that is the evil static-causing connector.

 

 

Mandy figured out that you could remove it and still play it (I take no responsibility if you do the same) NO MORE STATIC! I’m not sure what the purpose of it is, but I think it has to do something with grounding it against electricity.

 

 

What it looks like when I wear it.

 

 

The only thing I don’t like about it is that I have to change the earhook back and forth whenever I want to listen to music or participate in conversation. The only reason why I have to switch back and forth is because I’ve got my Auria programmed to listen to music alone, because with the hearing aid, I hated hearing all the background noise, as I felt it overshadowed the music.

 

With my hearing aids, I could just pull off the boots, or switch back and forth between microphone (hearing both music and the environment), or just music alone.

 

I’m currently looking into other methods of getting the sound to my ears, such as the HATIS Epic. When the Harmony comes out, the built-in T-Coil will eliminate the whole changing-earhooks and the use of a Y-Split for stereo sound.

 

Some ask, why use the Y-Split? It’s needed because I have two different cables, one for my hearing aid, and one for the cochlear implant, to get stereo sound. (don’t have a picture yet as the cable for the hearing aid is missing at the moment!)

 

Be warned, this method with the HATIS only works if you have a telecoil built into your hearing aid and/or if your hearing aid is programmed for it (if needed). I have a Siemens Triano SP digital hearing aid with a telecoil. I would highly recommend, as with any assistive listening device (other than the cochlear implant) to try it out before you buy it (if you can).

 

Personally, I can’t wait for the Harmony, because I’m tired of having to change earhooks, and having two cables of different lengths and colors.

 

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?