Advanced Bionics Neptune Processor Monday, June 4, 2012

With the announcement of the waterproof, swimmable Neptune sound processor, I am beyond excited about this. I have been waiting years for a hearing aid that was able to withstand water, and strong enough for my hearing loss (and still waiting). And now we have a cochlear implant processor that can do it? AMAZING.

I have been following the news around the Neptune, and while I am not sure if I will qualify for an upgrade, as I already have the Harmony. The Neptune is is definitely a huge step forward in Cochlear Implant technology.

However, after thinking about it for awhile, the ability to hear in all environments slightly scares me. I’ve gone my entire life without swimming with hearing aids on (other than that unfortunate incident at the babysitter’s when I was five). I vaguely remember the feeling of “WOW! I CAN HEAR”, as I climbed out of the pool and my hearing aids died their quick, waterlogged electrical death.

Throughout my life, as a water baby through and through, logging countless hours in the pool as a child growing up in the intense heat of a Phoenix summer, and as a competitive swimmer for one of the nation’s top high school girl’s swim teams, I’ve made it by without hearing. In high school, one of the highlights of my life was a five-day whitewater rafting trip down the San Juan river. There were people who signed, so I wasn’t alone, but I still spent time on the water in silence. All these years, and I’ve made it through my aquatic life, without hearing sound.

Now to think…what will it sound like to be swimming, and hearing the noise of the water as you are surrounded by others? Of playing Marco Polo, and being able to participate with the hearing children at daycare? Of hearing the bird calls while floating down the San Juan in a ducky boat? Of not being afraid of being thrown in the pool with my hearing aids on. Taking kayaking lessons and having the full experience of hearing the teacher’s instructions on how to do a roll to get one upright. Of floating outside today in my pool, in silence, enjoying the blue sky and sunshine shining down on me.

There are pros and cons to the Neptune for my personal use. To hear while wet is a foreign concept to me.

I think today’s kids who have this chance to fully participate in the life aquatic are extremely lucky. Thank you, Advanced Bionics, for creating this swimmable processor.

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.

Those Beeps And Those Birds Thursday, July 12, 2007

The more time I spend at work, the more I’m amazed by the sounds that I can hear with the cochlear implant.

For one, the registers are so loud. You can hear the beeps halfway across the store. I can hear the beeps of the register as far back as Infants. The odd thing is, when I used to be up front as a cashier, it didn’t seem that loud. But to get to infants, you have to walk through girls, boys, then half of infants. The screech and squeaks of the cart wheels. And the kids, and some of the “interactive” toys that we have. I’m not even going to get started on that topic.

I spent a good bit of time this morning listening to my fellow teammates frequently asking my team lead questions via the walkie. “i need more gray dots.” “i’m done with ____. what do you want me to do next?” “okay, i need you to go over to ____.” “what’s your location?”. I was amused, yet surprised by how much my team lead gets interrupted by people all day.

Not to mention I accidentally locked my keys in my car when I got to work this morning. I had to call my mom but I had to put it on speakerphone, and had a short conversation with her, as I was heading in the door. I really need to find a phone that will actually work with the cochlear implant and the hearing aid, and still have the same functions as the sidekick (email/qwerty keyboard), yet not have the whole world hear the conversation.

Yesterday, I hung out with Jenni, and I got to play with her birds. It’s the first time that I’ve been around birds since I’ve gotten the CI (except for this spring).

It was interesting to note the difference between listening to her bird speak with the hearing aid versus the CI. Obviously, you can’t lipread a bird, but the CI allows you to hear what the speech sounds the bird is trying to make and comprehend them. It was an…unusual experience in terms of listening practice. And technically, she wasn’t a good one to listen to, because Jenni says that Harley mumbles.

In the words of Harley: “ha-ha, ha-ha”

Every Breath You Take Friday, April 20, 2007

At this very minute, I’m riding along in the car on my way to Buffalo, music blasting my eardrums out. In the midst of the din, the words stick out.

“Is this ‘Every Breath You Take’?” I ask.

“Yes it is,” says Lauren.

However, we’re having an argument over who sings this song.

It sounds like the version I have, and if it is, it’s the one with Christina Aguilera in it.

We’ll find out when we arrive and I can dig my iPOD out of the trunk.

I am super-excited, because I can’t hear the music very well due to the loudness/distortion of it, yet the thing that stood out the clearest was the words, which helped me to identify the song.

That itself is amazing!

Now let’s see what sounds Canada and Niagara Falls brings!

Recognizing Crazy Town’s “Butterfly” Within A Second Monday, February 12, 2007

Last time I talked about the sounds I was hearing at the hockey game. It held true for the next night.

The most exciting moment happened on Saturday. I was fiddling around with the camera, when I instantly recognized a song as soon as it started. Once again, Crazy Town’s “Butterfly” was recognized within less than one second and played for about 3 seconds, as the game started up again.

I turned to JJ and said “That sounds like Crazy Town’s ‘Butterfly’.”

“It is.”

“It is? No way, are you serious??? That is SO awesome!”

I was all excited over that because I have no idea what they’re going to play at the games, and usually everything sounds distorted coming through the PA system.

Finally, here’s a picture of me shooting away! I took about 12+ gigs of photos this weekend of ice hockey alone. It was my first time doing sports photography, and I found that I absolutely love love LOVE it. I plan to continue with it but next weekend is our last two home games, and then the season’s over. We’re not eligible for the playoffs this year, but next year.

I’ve met so many people this year through hockey, including some cute guys. I may have a date or two…we will see. ^.^

(photo by JJ)

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.

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.

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?

Rockin’ The Holidays Party Pictures Friday, January 12, 2007

December 15, 2006, we had our Rockin’ The Holidays party for all cochlear implant users, friends, faculty, and staff at school. It was a great success as 35 people showed up between 2 and 5 pm.

We played Guess Who This Person Is, Pin The Magnet On The CI, Musical Chairs, Red Light/Green Light in chairs, decorated cookies, listened to music, and general conversation.

Here are a select few pictures from the party. The rest are on photobucket.com. Contact me for access to the folder to see the pictures and/or download them to your own computer.