Thursday, December 4, 2008

Advantages of Speaking: Not Audist?

Regarding the perhaps post. I want to thank everyone for their encouraging words and also to those who expressed their opinions. I'm not sure if you'll come back here to see what I have to say, since you're anonymous and may have just stopped by and been spooked away by my last post.

Let me speak to you all here: I don't try to promote one lifestyle over another. I have met so many different people who are happy the way they are, however different or similar their life is to mine.

I do acknowledge the glaringly obvious fact that some lifestyles are easier than others. If you can speak clearly, you are in the majority. But you are also in the privileged. You live easier as a result of that. And the comments I may have made about it being SO much better to be able to communicate with everyone around you- well. I don't feel it's audist. I feel it's common sense. Those people can learn both sign and English and whatever other language they want to.

I'm not saying Deaf can't learn other languages. I personally used to know Latin, Spanish, and French. But I don't speak it. I read and write those languages. What I am saying is it's easier if you can speak.

As I get older, I find it increasingly harder to find my way around in a world that is supposed to be so open to me and which I find increasingly shuts me out and not even on purpose.

I can't go to a drive-through without getting a glare because I've driven past the speaker box, and I get to the window and their faces melt into sympathy when they realize they've misjudged me.

I can't walk down a hill in the dark with a group of laughing friends and join in their conversation efficiently because lipreading is never 100% accurate or reachable.

Even if they were a group of deaf friends or friends who signed, it still does NOT CHANGE ANYTHING. It just changes who my friends are and how it may mean they're more considerate and/or patient or quicker learners of sign than most others are.

There are so many things I can't do, and I'm not content to just accept them for what they are. I'm not content to go to a culture that (while wonderful in its own ways) STILL doesn't solve my problems with 99.9% of the world. I know that if I'm not happy with something then I have to either a) accept it or b) try my hardest to change it in some way. I HAVE tried to accept it but the reality is that I can't imagine going on for 70 or more years disconnected, using paper and pen and an interpreter (not just in school) perpetually. I have to try and CHANGE my life however I can because here's a fact:

I can't change 99.9% of the world. But I can change how I respond to things. And I have. I've used my phone to talk to people more times than I can count and people are often impressed at how fast I type on the phone now. I use paper/pen. But this still doesn't integrate me into the conversations I so long to be involved in. Whipping out your phone to ask a simple, "How are you" to somebody in an elevator who will then look at you for a cue as on how to respond because of course, you aren't talking so they wonder "How do I talk to this person?", takes longer than the actual elevator ride and takes more guts to do than just verbally saying, "How are you?" with a friendly smile and having them say it back to you.

Even as a child I knew there was NO way I could fix my separateness from the world. At the young age of six, I felt the stinging damage. I believe I felt it younger. Not because I was raised in a hearing family. They signed and truly did their best to include me. Not because I was told I was "inferior." In fact, I went to a school where deaf culture was celebrated and seen to be unique. Nothing or nobody made me feel this way. It was just the sum of my experiences and continues to be. As Helen Keller, someone who overcame most amazing odds in a time that was more than willing to put away someone like her in an institute without ever educating her, said in a letter to someone,

"The problems of deafness are deeper and more complex, if not more important, than those of blindness. Deafness is a much worse misfortune. For it means the loss of the most vital stimulus--the sound of the voice that brings language, sets thoughts astir and keeps us in the intellectual company of man."

In other words: "Blindness separates you from things, deafness separates you from people."

I long to be INVOLVED. I long to not have to depend on my fluent 15 year old "hearing" sister to voice for me on holidays or with people who don't know sign.

I feel I may be able to learn to speak well enough someday that I may be able to go up to my favorite burger joint and say, "I want a deluxe, with fries" without any awkward hesitance on either my or the cashier's part. And that is when I will feel like I most fit in- when I can look at that person on the elevator and say "second floor, please" without awkwardly reaching across them or showing them two fingers.

And for that, I would give almost anything. I think anyone could relate to wanting to be involved with their own world and being frustrated when you're a 19 year old who has to have people voice for her constantly and they're constantly getting it wrong and making you sound like a different person than you are. Your world isn't deaf or hearing or confined to just your closest friends. It's EVERYONE you encounter everyday.

Wednesday, November 19, 2008

Perhaps I need to just cry

Perhaps I need to just let it all out
Perhaps I need to go for a good long walk
Perhaps I need to take time for myself- more than the small snatches I don't feel belong to me, because I am always supposed to do something else.
Perhaps I need to take a break?
Perhaps I can do it, indeed, I know I can.
Perhaps I need to stop thinking some people are looking at me oddly when I can't be voiced for correctly or when I can't catch what they're saying fast enough
Perhaps I need to believe in myself more
Perhaps I need to believe in myself less? (As not to get my hopes up)
Perhaps I need some perspective-

Actually I know I do but where from? I'm one of those people who, with a moment of eyes-closed, "let it all in," can almost successfully leave my current train of thought and take an outsider view of my current situation. I know I shouldn't be so dramatic but at the same time I know others would go mad- ABSOLUTELY MAD- if they had to communicate without voice for half a day let less 19 years.

Perhaps I need to just shape up
Perhaps I shouldn't post this- it's not as eloquent and just sounds whiny.

What AM I saying here? Oooo, existential crisis?

I want to put my life on hold, step out of it, and devote a month or two to intensive studying for my implant. And to draw, write, and finally get that website up. Not just for myself but for the people I hope to help with it as well.

I want to take what they called a "sabbatical" ... what I am doing right now is NOT working.

Don't worry, I'm not as ... whatever I sound right now. I'm just walking around outside of the Hearing clinic, waiting for my appointment at 11:30.

After a morning in which I felt like things were definitely not working with the interpreters in class. Not because they don't do well- they do. But because it isn't the right option for me.

I never want to depend on sign, as far as I'm concerned. I want to meet with Thom again and speak to him- REALLY speak, instead of having to ask my wonderful, brilliant boyfriend to translate.

I want to be able to do this with everyone I meet, because most people I know don't sign or don't sign that well.

Yet, I know I'm really blessed. I have a great group of friends, both online and in person. I have the CI- I have the help I'm getting for it. I even have UW resources.

Perhaps......perhaps, what?

I'll probably go back and erase this before anyone gets to see it. But I'm posting it right now because I don't trust my phone to successfully save it without erasing it, except if I actually press the "Post" button which posts it to the web.

Tuesday, November 4, 2008

Election Day 2008!

A historical moment has been upon us for this past year and even longer before that, before I even knew who McCain or Obama was.

And finally, it is here. Election Day!!

So. Let's look at some of the important issues and interesting considerations the next president of America will take on his plate:

140,000 American troops are in Iraq.

10- More than 10% (to be exact, 15%) of Americans are uninsured medically
90 guns per 100 people in the U.S- the most armed country in the world (Reuters news)
8.5 million barrels of oil produced per day in U.S (we use 20.7 million a day)
70% of 8th graders can't read at grade level
6 wars going on around the world currently (Yes, I'm surprised it's "only" six too)
550,000-650,000 illegal immigrants in New York alone, not counting other states
485,000,000,000 federal budget deficit
3 million pregnancies a year are unintended- out of those, 1.3 million pregnancies are ended
2 states out of 50 that allow same-sex marriage (California & Massachusetts)
1 nation (as divided as it may feel right now between the two parties, we ARE one nation)

I have to admit that I am glad to live in the U.S, even despite the fact America has become increasingly unpopular over the last few years, despite the fact I have been sickened to hear the wild rumors slung from both sides of the fence that cost both candidates some validity in my mind, despite the fact we have a lot of problems right now, and despite the fact that I am very much an "independent" or "liberal" which leads me to feel that the party system doesn't work very well.

But it is precisely because of the overused concept of "freedom" that I am able to have an opinion- to uphold my main mindset of true equality and freedom- that we, as people (not just as Americans), should be allowed to live our lives in the fullest way possible. I believe the government should not interfere much with people's lives, but rather that "the people" should take it upon themselves to see why they should care and get involved with their community. Idealistic, I know.

In other countries, I might be told to keep my yap to myself. Here, I am allowed to actually try to make a difference. I don't know as much about other countries as I'd like, but thanks to the program at school I am in, I have heard first-hand accounts from people I am glad to call friends - an opinionated outgoing white woman who came from South Africa, a bold and funny Aussie, and a sweet intelligent girl whose parents immigrated from Iran.

The others in my program, though they may "just" be Americans, still continue to offer new perspectives to me in addition to the ones who can offer a look beyond America's borders.

And what a look it is. I have been forced to explore issues that most people would rather ignore but I have learned so much about the differences of people, yet I have seen how very similar people are, as cliche as that sounds.

I am proud that this is the first presidential election I am able to vote in and that so many of my other peers are taking it upon themselves to learn about what candidates support what issues and to get out there and actually get involved.

Okay, you may not like any of the candidates but you can't deny that today is a historic day and that maybe, just maybe, the next four years will be good for America.

It's interesting because I have always hated the word "disability"- I still do. I don't think it's a good word to use because it has negative connotations at times. Yet, in the past few years, disability rights and issues have gotten more focus than usual. This is great! My youngest brother is Autistic. I capitalize this word because it seems like it should be. He is a magnificent singer, an adorable boy, a good reader, and many years ago, it would have been common advice to put him into an institute. It would have been common advice to put me into one too, because of my deafness.

How far we all have come, as a nation that promotes equality and access.

So, when I thought of the issues that hit closest to home for me, I immediately thought "disability rights." Where do the candidates stand on bilateral implants, which some of the amazing bloggers, like Jennifer and David, struggled for so long to get approved for? Where do they stand on captioning more things? What about education for "special-needs"? Unfortunately, they aren't asked those very specific questions. But we can look at where they stand on health care, social security, or education, and gather a probable idea of how it will affect closely-tied things.

I want the future generation, some of whom may end up with autistic brothers too, or deaf, or blind, or with ADHD, to not have to struggle as hard as some of us have needed to. I was fortunate to have the state pay completely for my implant surgery, which was approved within weeks. Others wait months and even years (Jennifer and Amanda Conde)

I believe though, that change in those areas will mainly happen thanks to the perseverance of "local" people, not the big shots up in D.C. We will see better laws being made to protect, to bring access, to fund better, and whatever else is sorely lacking right now. It may not happen as soon as we hope. My mother had to continually advocate for me for years, to get interpreters and to mainstream me before it was common to do so.

Today, I will say that yes, I have a "disability". But I live in a country that allows so much free speech that we can push for laws and new policies, for ourselves, each other, and people who haven't even come yet.

As flawed as America is, I still have hope.

So, go out there and vote!!!!

Monday, November 3, 2008

Is it a matter of BEATING machine (in which case it is impossible)? Or beating my brain (in which case, my brain just has to learn)?

I am so frustrated with the pitch test right now.

I want to be the best and I won't settle for less.

Hearing aid can hit "normal" for the pitch, alone. Implant hits the pitch deficit. It can't even get to low-normal.... with them combined, my brain is confused. It does well but not great.

I sit with laptop on lap, homework laying beside me undone, obsessively taking the pitch test, over and over. I close my eyes when I have to, because while I hear the pitches loud and clear, I can't place which is higher or lower for some of them. Then I realize, I've pressed the spacebar to repeat perhaps a little too much in my strained effort to distinguish which is which. So I go with my instinct.

I let the silence fall like waves back to the sea, because I suspect the electrodes in my brain aren't firing FAST enough to jump from the previous pair to the next. Then I hit the spacebar. Usually, it's clearer when I've had a second of silence to let my brain wipe the slate clean.

I WILL get this.

Sunday, October 5, 2008


Has anyone experienced this? I've been out of batteries for my right ear (hearing aid) for about two weeks now, so I've been using only the implant.

But, when I listen to music.... like for example, I was listening to Oasis' Wonderwall just to listen to it and it suddenly seemed like I COULD hear in my right ear. Not like I was actually picking up sound... but as though that side was picking up or filling in the space.... almost like a "phantom" ear. I don't mean tinnitus or anything.

Right now, I lack the ability to explain this. Maybe one of you will know what I mean?


Sunday, September 28, 2008

Returning to School Part 1: Cued Speech & Accurate Sound Representation

So, while I wear my implant all the time, I hear but not HEAR- I only truly understand the environmental noises. And while that is wildly useful (Some noises I've noticed in this past month: oven timer beeping, the door opening signaling the arrival of someone, being able to follow voices in my class discussion) I want MORE.

Classes loomed over me and with it, a certain sadness. It had everything to do with the monotonous repetition of sameness in how I process information. That is to say, I use sign language interpreters. I wanted it to be different yet I had known it wouldn't be this quarter.

I had a CART transcriber for my first two classes of chemistry. CART stands for Communication Access Realtime Translation. Basically, someone sits next to me with a special typewriter that is connected to a small laptop, and allows them to type down everything that's being said. It was very fascinating to see it in practice since she did indeed capture EVERYTHING that was being said by the professor (although not actually in realtime, more like a 7 second lag) It felt like the human dimension was being taken away although I loved the direct verbatim style, because I am wildly fond of reading and absorb well that way.

So, she asked if I liked it and said she'd love to transcribe for me the rest of the quarter. I replied that I liked it. I didn't say anything about her transcribing, though. I wish I could have both- the human interaction and the amazing accuracy without the paraphasing that can sometimes occur with interpreters.

An idea began simmering at the edge of my mind.... Since I can access the SOUNDS of language with my implant, why should I have to watch sign language interpreters if there's OTHER interpreters out there who can represent what I'm hearing more accurately? With sign language there's a slight lag as well as the problematic tendency of people using words that aren't present in sign language, so they get converted to their simplistic versions. The only example I can think of doesn't have to do with vocabulary but rather with English cliches, but I hope you will get the idea. If someone were to say the phrase, "elbow grease" it'd get signed as "hard work."

There is a way to match up signs with sounds other than SEE (Signing Exact English). It's called cued speech. Cued speech is the use of 8 handshapes to represent consonant sounds and 4 handshapes to represent vowels.

It's not a language, but rather a way of representing what's already there. Cued speech is universal, which also came of great interest to me. You can cue in Spanish, even cue a Southern dialect with accurate representation.

I started researching with a zest and emailing people. I asked my school if it was possible to get a cued speech interpreter. The response was:

"There is *one* cued speech interpreter in Washington State (that I know of). She lives in the Seattle area. We might be able to get her for future quarters.

This is something you'd want to discuss with us though."

I thought, "Hmm... so I WOULD be able to get a cued speech transliterator if I wanted to. Let's go ahead and learn it then!"

How does this apply to those of you with cochlear implants? Well, it can help with better lipreading, more accurate matching-up of sounds with words and maintain or improve speech. For me, I wish 110% to learn speech better so I can communicate easier with others. I also really want to redirect my brain to the IMPLANT, the auditory part of things instead of the visual. I found a site
at that said:

If development of speech is desired, Cued Speech can support speech and articulation skills by:

  • focusing attention on the mouth
  • reinforcing the pattern of phonemes within a word or phrase
  • identifying the speech sound(s) and syllables being targeted
  • being a motoric reminder and trigger of speech production
  • integrating sound, sight, and motor aspects to make learning more fun!

So, knowing that HSDC teaches cued speech to infants, I emailed them asking about if they knew where I could learn. Turns out they have an upcoming workshop for cued speech October 17 and 18th!! Both are all day but only $10 for me. Such a good deal because I know there are people who are professionals who will have to pay $120 for the same workshop. I'm going for sure. It will be easier learning from someone instead of going through it myself in a disorganized manner.
I worry, What if I am really terrible at cueing? What if I can't remember any of it? What if I fall in love with cueing? Even, what if I don't and this means I've exhausted all the possible options for language out there? Will it be hard to teach people close to me cued speech?

Those things don't matter yet and I know that. But I'm REALLY hoping I won't be bad at cueing and it'll be relatively easy to learn, needless to say!

The downfall is that there are not many cuers in this area. Cueing is actually practically unheard of around here. I was surprised to find that my mom, who works with deaf people, hadn't heard of cued speech.

I look forward to coming back and discussing how the workshop went, if it helps my speech in the long run, and seeing if I end up using cued speech in the future for classes or even for daily interaction!!

In the meantime, here is more information on cued speech. I encourage you to leave comments & thoughts.

Cued Speech Association Information Page
Short 10 Minute Film (With sign language interpretation, captions, and spoken English)

Saturday, September 27, 2008

CPR Class

I got my CPR & First Aid certificate today! I'm glad. The class was a bit annoying though, since it could have been compressed into 3 hours instead of the 9 hours it took! I finally just said, "Can I just take the test? I know this material already and don't want to review it." So they let me leave 45 minutes early and take the test but then I had to stay and wait! I wished I had just asked about taking it early earlier than I did! I got 100% though on both the written and the CPR skills test so I was really excited because it helped to know I CAN help someone if they ever need it.

This was something I wrote on my phone during a break.

We speak in nuances buried upon nuances. We never say something simply even if we believe we just said a simple statement.

We laughingly say, "You got me." Or we say with a note of awe, eyebrows raised slightly, "The sunset was beautiful." Rarely do we say something without at least betraying our emotions.

Yesterday, I was told I had an expressive face by a classmate. I didn't think that I did but I guess I do? And apparently, it helps classmates understand what my "verbal" tone is when the interpreters don't get it through aptly enough at times (even though their voice-interpreting may have been 100% correct.) How much do I betray that I am unaware of?

The class was held at the Hearing, Speech, and Deafness Center (HSDC) in Seattle. This was also where I went to the program PIP (parent-infant-program) with my parents as a baby. I mentioned that to someone who worked there (Karen?) and she gasped. She then excitedly led me through the remodeled building to a room I had a sensation of familiarity in. On the walls hung pictures and one of the pictures showed the 1989 PIP people. There I was, sitting on my father's lap. I was surprised to see they STILL had pictures from 19 years ago. Karen asked me if we could talk later, since she was interested in finding out what happened to the kids from PIP for follow-up studies. I asked how many children in the PIP program had cochlear implants or if those kids went to Children's for therapy and as a result didn't go to PIP. She said two children in the program had implants but were learning ASL (PIP teaches people ASL and assists with early-intervention). The rest weren't implanted. Cued speech (a system of representing a language's sounds/phonemes visually) was also occasionally taught there in addition to the various types of sign.

This struck a cord in me, thinking of children who could be speaking and being able to keep up with friends in groups in the future, who weren't. So later, I called the center and acquired the phone number and email of the director of PIP. I emailed her asking if I could speak to the parents there about my experiences growing up deaf, things that helped me, and my opinion of having a cochlear implant. I REALLY hope they allow me to speak there and this is definitely something I will pursue because I feel it is SO essential that those parents get all possible perspectives and understand how much a cochlear implant does but also how sign language is beneficial. I do understand it's a sticky situation because there is a lot of controversy and the fact these parents are already in PIP kind of suggests the route they're considering. I don't claim to know all the answers nor would I presume to, but I really think cochlear implants are THE way to fully ensure your child is involved in the world around them.

Wednesday, September 24, 2008

Cochlear Implants & Deaf Culture

How hectic it's been lately! School started today. I found that while I know where all the buildings are now and can even direct someone to a building easily, managing my time isn't quite as easy. Sigh.

I know someone who is getting their wisdom teeth out and that person was talking about how they were afraid. I sympathetized but felt bad for the immediate reaction I had in my mind which was this:

Afraid of a simple dental procedure? That is NOTHING compared to consenting to getting your head drilled into, for an implant you hope you'll like but which you really have little clue as to what to expect and where you received 10 stitches and two permanent bumps on your head.

I find that after receiving the CI, I am less worried about other procedures that I or others might have done to us. I also find that the CI has empowered me in other odd ways. I'm more confident about my choice to make decisions because I made what is one of the biggest decisions of my life and I haven't regretted it for a single moment. Some people thought I would but I haven't. Like I say, "The only thing I regret is not having done it sooner."

I was texting with Tess, who I've known since I was 6 months old and who is profoundly deaf. She uses interpreters in school when she goes to school. She said, "I still can't believe you got an implant. I wouldn't have!"

I really can't relate to that sentiment at all, which simultaneously saddened and excited me. Saddened because it is yet another distinction of how I am far removed from the "deaf culture" and excited because I really am that much different than the usual "mindset." I don't mean this in a bad way at all. I am an advocate of sign language (for babies as well!) but I am not an advocate of it when it is used alone.

Many deaf people seem more receptive to the CI than in the 90s. When I tell a Deaf person I have an implant, they immediately ask, "Does it work?" then "Doesn't the constant sound drive you crazy?"

Then of course I get high-spirited and tell them of how much the CI has changed my life and how happy I am I have it. Then the usual reaction I get is one of interested listening and then a statement of how it wouldn't benefit them but it's good I like it. At least they aren't shutting me out. I just constantly wonder, "Do I REALLY think that differently? Why aren't more prelingually deaf people getting implants or at least as curious as I was that it bothers them everyday wondering "What if"?"

There is a slang word that exists in culture today- "Oreo," signifying a black person who is white on the inside. There is actually also a sign in the deaf culture for a deaf person that thinks like a hearing person and is usually integrated in the culture. It is the sign for "hearing," but signed near the forehead to signify they are "hearing-in-their-mind." This person usually doesn't have much sense of deaf culture or chooses to live outside it.

I've been called "hearing-in-the-mind" and finally began identifying myself as "hearing-in-the-mind" when deaf people would ask me if I was deaf, hard of hearing, or hearing. It was ample enough to summarize why I sign in Exact English, why I write and read as well as I do, as well as to explain the fact I (wanted to and now have) an implant which makes me uniquely both deaf and hearing.

There is no word like this in hearing culture. I have to explain I can't understand speech yet, although I hear the fan whirring above us and their voice as they ask, perfectly. I have to explain I don't use ASL. It gets tiring explaining but even tiring when people automatically assume that I use ASL because I am deaf and I never get a chance to explain so I have to find a way to slip it in there somewhere.

I feel a constant worry when meeting new people who have taken ASL classes or who think they know things about deaf people, about making sure those people know I'm NOT in the deaf culture because I fear being grouped and as a result, assigned traits that I don't even possess.

But what is unfortunate is that I believe, in order to have people listen to you, they have to feel they can relate to you. (which is probably why Obama is so popular right now, as a side note!) I want to get through to the deaf population about the usefulness of cochlear implants and about other things they might not be huge fans of. I can personally switch over to following deaf culture and customs, to signing ASL if need be, but I can never truly give myself over to it.

I used to have some people criticize me greatly for that but it seems that the deaf culture and the hearing culture, over the years, have learned how to soften both their positions and find a more common ground. I'm glad to see that because there are advantages to BOTH so there's no reason to have just one if you can have the other as well.

Sunday, September 7, 2008

Implants and water

So!! I'm finally back in Seattle which means it's a LOT easier to keep this updated. Just as well, because I have a feeling I'll have a lot to update with. :D Today is on IMPLANTS AND WATER- the all-too-well-known dilemma all implant users encounter, whether they use a body worn processor or a headpiece. The short of it is, we can go in water and our implants can't.

But before I get into that- I was thinking today about how being content is basically a state of mind. But at the same time, you can't really be content if you're not moving forward the way you want or if some aspect in your life isn't how you want it to be. The good thing is, we can usually always change it. I'm not entirely content with everything but I can honestly say that I am happy. And the things that I'm not content with (not enough speech classes, not being done with planning classes, etc) I am working to change asap.

I was also laying in bed the other day, thinking about my implant. I was thinking about how much I regret not having getting it sooner, but how well it's worked out having it NOW. I honestly love this little thing that sticks to my head, that gives me a world of sound I never had before.

While in Colorado, my sister and I were planning to go to this really fun ex-Six Flags park. But they have a water park there. So of course I started thinking about the food-sealer trick of sealing the implant and then using a water cap. I asked my mom to take me to a store where they would have a food sealer I could ask them to demonstrate (and in the process sealing my implant!) but she said no, flat out. Then she realized she had treated an adult like a child (am I really an adult? It felt strange to have my mom call me that, honestly). So she said "You can do whatever you want to, but don't come crying to me when your implant gets ruined. You'd be better off leaving it here."

I yelled at her, "Try going a day without hearing ANYTHING! You'd be crying after a hour" and fled to my room. (Some adult I am, haha) A hour later, my family found me there asleep with my implant in my hand. I was angry and just plain sad that perhaps, they couldn't see just how much hearing means to me.

It means enough that I'd be willing to go to a store, seal my implant, and wear a swimming cap the whole day if necessary. I don't even care when people stare at me, as they did in the shopping lines in Colorado. A small part of me dislikes it, obviously, and feels a twinge of self-consciousness but then I think about what my implant does for me and I stand prouder. I wear it so casually, the blue earpiece always sitting on my ear, and I never say anything about it. It hurts my ear a lot because it's a little heavier than a hearing aid and it presses on my nerves sometimes, but I don't say this. What would be the point? The point is, I can hear and I'm happy.

What ended up happening was I took the implant to the park.

The theatrics we put ourselves through-I was determined to bring it there. I had given up on the idea of wearing it in water because really, I wouldn't be missing out on any conversation thanks to my sister being wonderfully fluent in sign and being the only one there. But I did try putting my implant in a plastic bag earlier before the park, but couldn't find a swim cap and didn't want to risk it. It was a little harder to hear through the plastic bag, obviously, but it worked. It was just much quieter and I feared turning up the volume and maybe at one point it becoming crystal-clear, crystal-sharp and FLOODING me with noise.

I ended up having fun despite the utter silence. But it did make me a little sad- I was laying in the coolness of the water, and I saw a child laughing and laughing as the waves kept nearly pushing her over. I thought, "If I had my implant or hearing aid on, I would be able to hear that." This was some child I didn't even know and I cared about being able to hear her. What's odd is my brain expected the laughter SO much that I could hear a faint laughter- as if my brain was giving it sound. I knew it wasn't really hearing- it was the "voice."

But what's amazing is I NEVER had the "voice" in my head growing up. What I thought in was sign, or the SENSATION of my lips moving, or sometimes a mouth as if I were lipreading. I have little to no auditory memory. Yet, my brain is supplying a voice now. When I scroll through my IPod without the direct connect, I HEAR the tapping it makes even though there is no sound. That was probably the most direct, clear "voice"/sound my brain ever recalled. I was surprised but what's funny is I find that sound annoying! (I love it in a way though, if just because I can hear it.)

But I realized beforehand, as I did with the water, that the roller coasters would be a problem, wouldn't they? So before my mom drove us, I ran into the house and grabbed a big roll of duct tape. They all asked what it was for and as a reply, I ripped a piece of the duct tape, folded it inside out so the sticky parts were on the outside, and put the tape on my implant's earpiece. In short, I taped the implant to my head.... with duct tape!!! You can see a little bit of the tape if you look closely at the picture. My mom groaned but said nothing. My stepdad chuckled. My sister rolled her eyes and said, "You're just really dramatic, you know that?" I smiled in anticipation of being able to hear on the roller coasters.

When we got there, my sister and I ran for the biggest coaster in the park. We got on the ride and swung our legs until the ride began. I heard the announcer speak, the machinery, the -click- of the restraints, and finally the loudness of the ride starting. I checked to see that my implant was secure, and it was fine- UNTIL the loop-de-loop! The magnet (circular part) fell off because my head hit the side of the seat lightly. Then I felt the tape peeling off. Oh no!!! So I clapped my hand to my head, and held the implant there throughout the loop-de-loop. The split second of silence then the sudden shrieking noise of the roller coaster when the magnet was put back on was ridiculous! I pulled it off, the tape's friction stinging my skin a bit. It really had worked pretty well- until bumping it or until the magnet came off! So for the rest of the day, I took off the implant and put it in my pack whenever we were about to ride a roller coaster. Basically, I started to only use my hearing aid. The dimension lost was really disappointing but losing my implant would be WORSE!

My suggestion for amusement parks/roller coasters is to wear a swim cap that's tight enough to hold the implant for roller coasters, or taking it off before you're going on the ride. But put it in a big pack and bring a plastic bag or something to hold your implant in so it doesn't just get dropped in your backpack! As for water- I wouldn't take the risk of sealing it unless it was your spare implant and you had tried it out already in a low-water environment like the shower before actually IMMERSING it. I might try the food sealer trick (search youtube for it) in the shower sometime to see if it works, AFTER testing if the implant even works through the bag, but I don't really swim much in the upcoming seasons, only summer, so I'm not too worried about it.

Rain- the implant holds up VERY well in the rain and I appreciate that. (Especially since I live in Seattle!!) I'm not worried about getting it wet like with hearing aids. It continues to work well! But as a precaution I still usually use a hood if it's raining hard but it looks like it's not entirely necessary! Obviously, it can't be submerged (showers, swimming, etc) but it's not often we spend time submerged! So in average living and wetness, the CI holds up GREAT. :)

Friday, August 29, 2008


So, I know I have totally not updated in awhile. AHHH! But the unfortunate thing is that I haven't found anything that's particularly scintillating. I'm also working on moving this to an actual website since I find that the more I progress or at least the more everything goes on, I have so much to write about- so much that it might actually profit from being split up into categories instead of having one ridiculously long blog everyday. But Flash (a program often used to make webpages) continues to challenge the limits of my skills.

I continue to try and learn but I feel like I have had a lack of NEW things to write about. This is actually not true, since everyday there is always something new to discover with the implant if you only try!

I started speech/auditory therapy. I'm talking more and more, despite the fact the auditory therapy is only one hour a week! :( I'm working on getting another therapist on board. The one I'm going to right now, Katie, works at Children's Hospital. She is absolutely sweet and marvelous- very patient, knows sign, and is just an all-around fun person to work with. I really am disappointed it's only once a week. My surgeon did a referral for me to go there, even though I'm 19! The one I'm working on getting is the one who originally suggested I get an implant. She has my old case files for how much I understood with my hearing aid only. I'm eager to get those back and to test them against the implant. So even with two therapists, I'll still only get around 2 hours of "professional" auditory therapy.

This is why it's so critical that I work AT HOME and in my daily life, so I've been trying to do that. Katie loaned me the "Advanced Bionics: Making the Connection" book which I 100% recommend to any cochlear implant user. It has various exercises, CDs, ideas for practicing with somebody, and even an answer key.

I tried to speak more today- but I feel like I can't speak as quickly as I sign. So I find myself speaking the words I can and the words I can't, I'll sign. That, or I'll sign and finish saying the last word perhaps 2 beats after I've finished signing! It's a bit funny but usually it's just frustrating. I find myself wondering why I didn't speak more before? I think a lot of it is that I basically couldn't hear myself say a LOT of the words and so I felt odd. I also wasn't confident- I still don't feel like most people could understand my speaking. I want to change this though. I've found that I can actually LISTEN to how people say words and then copy them until I sound near to them. It's exciting because while I could logically do that with hearing aids before, I couldn't hear the wonderful subtleties and nuances that everyone takes for granted hearing.

I'm in Denver right now. I have relatives here that I'm thrilled to see, especially since we don't see each other more than once a year. We all keep in touch via email and texting- I usually come here every summer. I find that anytime I travel lately, I google wherever I'm going to see how their cochlear implant facilities/resources are. At the age of four, a doctor in Denver persistently tried to get my mom to get me implanted. Having known this story since I was young, I wondered immediately if they had any breaking-edge developments with implants and if, perhaps during the short time I was here, I could volunteer myself as a guinea pig. ((A guinea pig whose hearing ability is entirely dependent on batteries and the continued developments that science makes! The amount of batteries I go through every month is mounting steadily- thank goodness for rechargeable batteries which is what I have with my implant.))

I found out that Cochlear Americas ((essentially the "opponent" of MY implant company)) seems to have a headquarters here. So I doubt I'll be able to pop in for any testing or whatever since it isn't entirely compatible. Quite a shame, really, since I was really hoping I could go back and say, "Hey! Y'all suggested I get an implant 15 years ago. Would you be interested in running any experiments even if it's just to see response time or see how I experience this piece of music (Or whatever)."

I do want to visit California to go to the Advanced Bionics headquarters.... I mean, I don't entirely know what exactly my intentions are but I know I have a vested interest in going. Maybe just to tour, maybe to be part of a research study, or maybe just to meet some of the people working on technological improvements. I know if I want to be involved, I have to MAKE it happen. With the advent of school approaching, I'm increasingly excited to FINALLY have a routine. While I love my free time, I don't feel I spend it as well as when I have a schedule to stick to.

This will be my first quarter with an implant. I don't really see my approach to how I attend school becoming any different right now, although I DO wish that it would. There are options to get an interpreter who only mouths words (and I'd assume they could sign, possibly, if I requested one that could)- so that I won't look at the signs and rather, only lipread. But in a big lecture hall, I'll be the first to admit this could get challenging.... I'd have to wear my glasses everyday and sit up in the front. I have to look at what will serve me best-

I feel like I use my sign as a crutch, which people will probably laugh at when they read this. Understandable- I don't begrudge you for that. I actually do think it sounds silly in retrospect. But in the long run, VASTLY more people speak than sign. I want to be able to be part of that, despite the odds against me. I already lipread pretty well but there are times I can't seem to lipread or people are speaking differently than I'm used to seeing or I have to wait until I can pick up the topic. I think this will always be something I have to do- lipread.

So how would having to lipread in school help or hinder me? I think it works both ways- an obvious hindrance is if I fall behind or if I have NO clue what they're saying. Oops, then I miss an assignment or an important piece that I needed to know for a test! But in a positive way, if I succeed then I'll be glad I could do it and perhaps me HEARING the words exactly as I read them, will help me to learn more.

I don't know- I want CHANGE. I didn't get an implant for things to remain the same. But I know there's already been changes even if I don't notice them as much as I might notice other things that point to "success." Is this implant already a success in its own right though? Yes, it is- it serves its purpose.... to bring sounds to me that I've never heard before. But I continue to want MORE out of it.

I saw my uncles Mike and Brian and my grandma Sally yesterday night. My grandma fattened us all up with some delicious strawberry dessert, homemade soup, homemade potato salad, and.... oh. I think we can all say we were groaning at how much we ate because it was just that good. And I showed everyone my implant, of course. I was secretly really eager because I mean, I REALLY LOVE THIS THING. Mike inquires, "Can you really hear with it?" I think this is the MOST common question I get. I feel continually like I have to prove the CI does work.

The wonderful thing is, people are usually amazed by how much I CAN hear. But I always feel this anxious anticipation with ANYBODY when I'm asked to demonstrate how well I hear now- "Listen as hard as you can! Come on, show them it DOES work. Show them you didn't get your head cut open for nothing. Remember, you hear "Shhh"...." (Still loving that to an amazing degree by the way!)

My family sat in my grandma's living room, in an unintentional circle. I closed my eyes and somebody would say something. My mom wanted me to try and find where it came from (I do have stereo hearing, thanks to wearing my hearing aid in my right ear). I don't feel I was that good at it.... it's confusing but the MORE I do it, the easier it becomes, especially with feedback.

We also tried having me say what I heard- which is something Katie had me do at the last session too. She had cards with sounds like "bzzz" or "duh duh duh" on them and I had to verbally say what it sounded like to me. It sounds easy, but it really isn't, oddly.

So, I actually could say things like, "I hear a T in whatever was said." A few times I even said it was my name and was correct. I reply, when asked, VERY tentatively, with a slow halting response that is entirely indicative of my confidence in my correctness. (That is to say, I'm not all that confident, hehe) I hate looking stupid or letting down people (even though consciously I KNOW it isn't about any of that and that everyone is usually really impressed at how the implant and my brain work together).

But in short, I'm still really excited. That's all for now :)

Gloria, if you read this- I'll try and get on my laptop tomorrow to send you the thing you need for the webpage. If anyone else sees this, pass this on to Gloria! Thanks!!

Thursday, July 3, 2008

Pitch Perception Test- Real Time Reporting!

As I've mentioned before, I LOVE the pitch perception test (Link found in the right column). It is challenging enough to be wildly interesting, delivers feedback immediately so I can integrate learning into it, and I feel it helps me notice my improvement (or lack thereof) in sound perception.

So... here goes. I find it helps to play it more than once since your results do improve with practice and it takes a bit to get into the "groove." Speaking of groove- let's get grooving with my results!

Hearing aid only (right ear has a profound hearing loss but can hear sounds well above 30db with the hearing aid):

Just for technicality's sake, I wear an Oticon hearing aid (not the best at all) on volume 4, which is the max. I used to hear things with volume 3 but now prefer 4. Whether this is due to my hearing declining or the hearing aid's quality, I'm not sure. There are extremely good high-tech hearing aids out there and then there's the basic ones. Laptop volume is at 51, which is fairly loud but not extremely loud.

It begins at a 96 hz difference. I got down to 24 hz fairly easily, with a few errors which I immediately try to file away in my memory. I get down to 3hz.

This is when I realize: Have I ever gotten down to 3hz? And also: "Has having the implant in already helped me THAT much with pitch perception, even when I don't have it in?"

I am at 1.5 hz now. The sounds don't seem that hard to discern and it seems odd that I would usually be unable to go below 6hz. My personal best was probably 4 or 3hz, on very few occasions. I would usually end at a 24-12hz or begin failing at 6hz pre-op and with only a hearing aid. I hadn't been practicing at this test since before my surgery which was a month ago!

I'm surprised. This is with the hearing aid alone, POST-implant. I would love to consult some surgeons or neurotechnicians to explain why this is happening. Heck, make me into your guinea pig if you wish! It's still not within "normal" scores, though, I believe.

It creeps slowly down, 0.75 hz, 0.375 hz, and with that the test is over. I've moved from a "possible pitch perception deficit" to being in the "low-normal" range. WHAT? I now can qualify as "normal" (albeit a "low" normal), despite my hearing loss?

I think of the Seattle Children's Science Museum and this incredibly fun room filled with body-measuring apparatus and activities, such as "How far can you reach?" and "How long can you hold your breath?" One of them is a TALL "sound measurement" scale. It looks like the "How hard can you hit?" tower with the light bulbs at some county fairs and amusement parks. Except it makes a beeping noise (That I've never heard, I just know it does because it says that on the directions). I was never able to play with it because I could never differentiate the pitches very well AT ALL. Well. I want to go back, see if that thing is there, and play it and see the lights beam up!

I am sitting here, blogging LIVE as I'm taking this test. I'll admit something: I was desperately, secretly afraid that my pitch perception would take a weird dive for the worse for some bizarre reason even though the opposite should occur with my brain's newfound pitch ability. At least with my hearing aid, it hasn't. In fact, with the 4th taking of this test (After hundreds in the past) I have, for the first time, moved from Level 5 (Possible Pitch Perception Deficit) to Level 2.5 (Somewhere between Normal and Very Good). Woah!

Now... to try it with the implant alone. The sound adjustment sample sounds high and wailing, penetrating right into my head (and indeed it is!). Nevertheless, I hear it, which is all I need for right now. The volume on the laptop has increased from 51 to 64. The sounds no longer sound rich and tolerable- they are screamingly high, whiny as a toddler without a nap. My head begins to hurt before I am even through with the first pair. I push on, however. I notice that the "lower" pitches are almost imperceptible but noticeable since they "FEEL" lower and SOUND quieter in my head even though the volume remains the same for both pitches.

No score is given because my pitch perception was too wide for them to measure. That is to say, I fail. My head is throbbing and I wonder if the volume on my processor is too high. I pull the magnet-processor off my head where it falls limp against my palm, flashing its lonely red light. The volume is all the way up. I sigh, haunted by the thought that the louder it needs to be, the worse my ears are. But, of course, this isn't a hearing aid and if it's all the way up it just means my comfort level for sound has increased much more since Mapping #2, which is good. I wonder if it signifies, "My brain is ready for MORE!!!"

I decide to go take a break for a few minutes before I return.

B# or Ship Out

I'm listening to "John Coltrane's My Favourite Things" right now. The beginning sent chills up my arms for some reason (Auditory overload? Amazing music? Both?). But then ... it dropped away a mere minute into the composition. I only have my implant on not my hearing aid, so that could be why. But it strikes me as odd.

What I've really found though, is it takes my brain time to ADJUST. Even if I take it out to check the volume and then put it back on moments after I've taken it out, sound composition drops dramatically until my brain has had time to adjust. It seems odd that I couldn't just jump right back into it but it also makes sense.

I tried it with Ian's iphone, which he wasn't certain if the cord fit the Iphone properly enough to deliver the best sound. I think he said this right after I said things sounded HIGH and oddly distorted. I thought, "Oh no. What if it isn't the cord? I'm not going to say anything..." He turned up the music slowly and then all of a sudden, I pulled my implant out FAST. The sound had increased from a comfortable level to suddenly a painful one, piping into my head and it HURT. After that, Ian had me adjust the volume by myself because he didn't want to hurt me.

I remarked to him that I would for sure have to find a way to "lock" my ipod touch's volume because I can see myself grabbing it and accidentally sliding the volume up and blasting my auditory nerve with painful sound!

Notably, it cannot destroy my hearing or nerves but it HURTS so if it hurts, it follows that nobody would want to do it!

My natural biological capability for music has been substituted by a bionic ear, so of course.... Of course it sounds ODD. The first time I heard a song and tried to really listen, it sounded high-pitched and tinny. The Beatles' Blackbird sounds downright distorted. Where's the metronome? It's no longer razor-sharp clear, distinctly and easily picked out of the song. Even with the hearing aid in and the implant, it sounds HIGH and hardly what I'd call "music."

However, I CAN hear melodies now with most songs. This was a HUGE surprise because I wasn't even listening for it. I was sitting in Ian's darkened music room and oh, it was SWEET. The notes soared up and down distinctively and I finally, for the FIRST time, understood the concept of melody first-hand. I had understood the definition and concept but it was like being told what stars look like without having ever seen them.

Before, I could kind of understand why the melody is "so essential" but didn't really CARE. But... Music suddenly makes so much more sense now. I happily told Ian, "So this is how you hum songs! You follow the melody!" He looked surprised, as if it were common sense..... and of course it is for most people.

I had always thought you hummed just by following the notes and making the timing right, which IS the definition of melody in a sense.... but I had never been able to truly hear the distinctiveness of NOTES in... holy crap, a complex sequence of music.

I think this is one reason why I liked classical music- because it has NOTHING else mixed in with it. It's simply one instrument, usually, and that instrument plays its own notes and nothing else. I have always liked a great variety of music though- but to me it was kind of just like "nice" sounds or "pretty" sounds that seemed pleasant. Again, that could be a definition, yes, but there's SO much more to a star than it just being "a light in the sky."

I took off my implant and listened to a Weezer song with my hearing aid. It was shockingly flat, dull, and empty. I had NEVER noticed that music was simply.... boring with my hearing aid on. It wasn't, of course, but with the implant out the quality and amount I get seems boring now.

I was just always happy I COULD hear and appreciate music to a degree. I've always loved music; my parents were always playing music or instruments and I was always playing around with instruments or dancing. But now I have to laugh at what I comprehended as music. With the implant on AND the hearing aid... oooh. It's so much more distinct. Terrible in some ways, (the high pitches leap out sometimes in some songs, Beatles make NO sense, when my brain is still "warming up" to a song it can take a minute to kick in and make sense, etc) but marvelous in other ways (Melody is FINDABLE which is AMAZING to me!, music seems way more 3D and more complex, and so on...)

I heard stereo for possibly the first time in my life. Left side was the voice while right side was the instruments.... and I went, "Huh. That's an interesting way to arrange it." My initial impression was, "This IS cool and it DOES help. But in a way, I prefer hearing it together, since the implant filters all sound directly to my brain anyway." It'd depend, I guess.

Having my hearing aid on in my right ear helps a TON and adds more "life" and sense to what I'm hearing with my bionic left ear.

My brain likes simple songs right now- because I like the practice of being able to pick out sounds and melodies. I WANT to leap into "complex" songs but I plan to listen to songs like Twinkle Twinkle Little Star as well. That might help a bit. I don't understand how people have such an expansive HUGE music memory at times- how can they pick out which melody a song is from when there's millions of songs out there? I wonder, will my brain ever be able to?

Part of me thinks it will in some cases, because I already am learning what sounds go with what things but I fear that I will lose that sense of knowledge with each new mapping (calibration for my new ear and software!) that I get, since sounds DO change with mappings.

Ian helps a lot by showing me which instruments are playing AS the song is playing which helps a TON because I have something to match with, to what I'm hearing. I don't know how people just naturally develop it, because while I CAN separate the elements a lot easier and find the melody, I find that it helps to such an amazing degree to have Ian tell me what's going on with the instruments/vocals.

It makes me wish I had somebody to walk with me all day and go, "This is what you're hearing!" I walk on the streets without my hearing aid on and just the implant and I hear really odd high pitched noises that I can't pinpoint to anything specific. I turn around, I look upwards, I stop walking, and still it continues and I can't find what it is.

But! One amazing thing was I was walking down the street and I saw a bus about 30 feet from me and I HEARD the doors shut. I knew instinctively it was the door. I didn't have to see the door to know it was the door. I'm not sure if it was my hearing aid, the implant, or the combination of both but it sure seemed louder and clearer and from across the street on top of that! So I chalked it up to the implant. Score.

I will keep you all up to date on how I'm doing with music!

Posts to Come: (A reminder for myself)

*Mapping #2
*Sounds I like/dislike/notice
*Ipod contents
*Pitch perception test.... take #1 after the implant.

Tuesday, July 1, 2008

Activation Day!

So, I got my nifty new ear turned on today. It was a rough morning due to me trying to make it there on time but that doesn't matter- what matters is... well, my initial impressions! I'm sure you're all curious. So here I go-

It is now about 12 hours since I officially became bionic. It started off quite unpredictably-because there were no bells or whistles (Both figuratively and in my head!). I was just talking to my mom and Tina was fiddling with the computer. With no warning, I heard a bunch of high pitched noises- VERY high. I kept signing to my mom for a few moments before I realized, "Hey, I'm hearing things!" It wasn't AMAZING but at the same time it was.

It was 100% PURE sound. Not amplified sound or vibrations. It was undeniably IN my head. I couldn't have mistaken it for vibrations, like I was told some people get instead of sound, when they're first activated. It was high pitchedness running through my synapses at thousands of rates per second..

My poor brain was just reeling to the tune of ...well, no tune. Just crazy beeps! And my emotion was, "Thank God it works!" and then, "I don't want to be a downer but I really hope it gets better than this?? What I'm hearing is downright weird. It's nothing like my hearing aid!"
I became elated, though, when Tina stopped the computer programming (those crazy beeps! I was eager to hear OTHER sounds). She let my ear loose into the "real world" that was pen tapping, her talking, my knuckles popping, and.... that forever elusive Sound. What sound? Well, it's been one I've been chasing for a long time, forever disappointed when even as loud as people were making it, my ears still couldn't cross that bridge. Oh, the bridge was there- or perhaps it was finally completed when I got my implant- but either way, I found the elusive "Shhh."

I was already excited when I heard how LOUD the pen cap was and how it seemed to "make sense." It wasn't some high pitched noise- it just sounded like a pen cap. Mind you though, it's VERY different than hearing with a hearing aid. The hearing aid's sounds seem to "make more sense" than the implant.

The implant sounds VERY artificial and I miss the not-so-subtle hum of traffic. With only the implant in and no hearing aid, I no longer hear the generalized sounds of the world around me- traffic humming, people talking indistinctly, and general atmosphere sounds. I hear on a microscopic level. Why are pencils scratching coming to me better than anything else? Odd. I miss it a lot, but I keep sighing in relief that I still have my right ear to slip a hearing aid in lovingly, if ever the artificialness becomes too much for me. But it hasn't happened yet.

Okay, it has crossed my mind once or twice... or maybe quite a few times. But I refuse to give in. The magnet remains clipped to my head, bonding to its unseen twin on the other side of my skin. Sounds are odd, but sound is SOUND. It is rich.

It was wildly odd to hear myself laugh and talk- it was so unexpectedly painfully high that I automatically tried to lower my pitch. I trust that I will learn how to do this in time; for I finally HEAR just how different it is from others' voices. My own voice makes me want to wince. Others' voices, however, do not bother me. I delight in hearing the subtleties. I heard whistling clearly and my knuckles popping (sorry, it's a bad habit I continue to entertain)- for the first time in my life, perhaps.

As for that "Shhh" sound, I asked Tina what the main "6 ling sounds" were and I was secretly afraid I wouldn't be able to hear them when she said them. Eee, shh, and oo are three of them. I heard ALL of them. Crystal clear as if it were a crystal glass shattering on a stone floor. Shhhhh.......perhaps one of the best things I've heard in my whole life, no kidding.

I was reiterant with the happily elated statement, "In all my 19 years it has never been that clear or distinct to me!"

What else did I hear? My sidekick phone sliding open! Woah! What a weird sound and yes, annoying. But not annoying enough to stop me from happily closing and opening it repeatedly. Who would have thought it was THAT loud? My mom asked if I could hear the keys; I couldn't. But as I type right now, I hear it. I hear myself blowing out air. Again, who would've thought it was THAT loud?

Color me surprised. What else.... paper! Paper.... UGH. Oh, and I heard the difference between my shoes hitting carpet and the metal lining on the stairs when I was running up my summer place's stairs. I fear trying my sax in a way because of the many ways it could pierce my nerves, yet I am very excited to try. I haven't listened to music deliberately yet- I think I'll save that for a time when I can be with Ian. Just as long as he doesn't play the banjo! Now, he has wonderful musical skills but with a hearing aid, I dislike the banjo at close range. I am curious at so many things- will my taste in the banjo change, being one of them.

My mom was thrilled and surprised I could hear. My sister and I shared a few minutes of bellyaching laughter when my mom excitedly asked, "Can you hear this?" and then said, "Yeees" very quietly but she slid her tongue over her lips, accidentally making a weird expression in the process. My sister and I couldn't hear the "Yees" and both of us only saw her tongue sliding over her lips. Confused, Tori and I stared at each other and both erupted into insane laughter that evolved into tears as we both went, "Mom! We can't hear your TONGUE on your lips!"

I then told my sister, "Ooo, I can hear this; can you?" while rubbing my fingers together- except they weren't together at all. It was just air between them. We cracked up again at the thought of such Tao-like sounds becoming vastly within my reach. With extraordinary hearing like that, I would easily hear sounds no human has ever heard before.

But? Some of the giddiness vanished when I was hit hard with CRUCIAL Lesson Number 1 of using an implant when I wasn't even out of the hospital parking yet! I was fiddling with my implant because I wanted the volume louder, while my mom was paying the parking fee.

I put it on and immediately within a timespan of perhaps 2.6 seconds I got the worst shock to my poor brain and auditory nerve ever. It was beyond rock-concert and jackhammer right by your ears while you're holding a megaphone to your ears loud. Instinctively, I grabbed the implant off my head as fast as I could and screamed, "SHIT!" which reverberated in the cold underground of the parking lot. Thankfully, I couldn't hear my high pitched scream or I would've probably fallen to my knees. Tears welled in my eyes involuntarily. I thought of much worse four letter words while trembling inwardly at the other thought in my head- "How the HELL do I put this back on my head after THAT?!"

My mom and sister jumped and my mom immediately scolded me for my hardly eloquent nor verbose expression of pain/shock but softened after I told her what had happened. I put it back on with much caution.

During lunch, I was subtly disappointed. My mom said it was so loud that she couldn't hear HERSELF talk but I thought, "It isn't loud in here yet I can't hear her.... and I miss the sounds of people talking, etc, that I'm used to getting when I walk into this pizza parlor."

Lesson Number Two: No, I don't hear the humming of cars or my favorite "environmental noises" that I have become so keenly attuned and used to. No, sound does NOT make much sense right now. It all almost sounds the same- a weird high pitched sound, unless I actually listen to differentiate. Water running sounds high pitched. Silverware? High pitched but worse than water. Tinfoil? Like chewing it, except in hearing form. And MUCH higher than the water. But, I remain hopeful and intrigued.

I still steel my mental muscles as hard as they can firm themselves, when I bring the magnet close to my head and then that moment where sound leaps brilliantly into my head. The sounds- so HIGH pitched and distinct, yet for this first day, seeming as though it's only caused by two SMALL things (at the most) that would hardly raise any notice to anyone else- instead of the full range of things that cause sound.

I am going to ask Tina, for sure, to lock it so it can't go full volume by accident and give me temporary Tourette's Syndrome again.

Quiet rooms are the only rooms I will put my implant on in before venturing out to the real world, right now, otherwise it is like plunging into an icy cold lake of sound. I look around with caution- somebody might be moving silverware which is not something I want to hear right when I put it on. It might feel good after the fact, but during the fact, it only feels unpleasant.

But it is not enough to deter me from wanting to see if I will hear cars again, and IN combination with my magnificent newly-heard sounds! Perhaps I will wear my hearing aid and my implant both, but right now I am only using the implant so my brain can't jump to its preferred default.

I plan to try and see if I can do the pitch test soon, but one thing I'll say- it IS tiring which I didn't expect! But I don't tire of showing off to people just what I can hear and finding out more and more, through their questions, of just what I CAN hear and decode.

I'm going to go poke at my sister's guinea pigs right now and see if I can evoke the whistling and squeaks that I have never heard clearly before in my life. =)

Cyborgically Yours!

Tuesday, June 24, 2008

Stitches Out!!

Yay!! I got my stitches out today! It is one week and one day since my surgery.

But... why didn't anybody tell me it would hurt?! OH MY GOSH. It really hurt because the stitches were tight and Dr. Rubenstein had to get little scissors and fit them under the stitches and snip them off, and of course the stitches moved a bit when he cut them.

There was a point where I stopped him and just asked, "Is it SUPPOSED to hurt?" He smiled sweetly and answered, "Just a little bit."

Liar. You were nice today- really really nice, but it wasn't "just a little bit."

I had intended to take aspirin right before my appointment (clever me!) but forgot (not so clever!).... but at least they're out! And the doctor says they're healing perfectly and right on track. Yay! :)

A lot of the staff came around to say hi, including Tina (audiologist) and her assistant... they all seem excited for me. It's really wonderful seeing the level of care they possess.

It's great having the stitches out because now it doesn't itch quite so much. (I never knew how much a TINY bit of thread could itch and make you crazy! Definitely the proverbial single straw that broke the camel's back.)

It isn't bleeding and didn't at all when the stitches were cut. So, my fear of my skin splitting open, bleeding and revealing the white boniness of my skull...... totally soothed.

I'll post a picture later :)

Hope everybody is enjoying the warm weather- I know I am. Especially since the doctor said, "You can resume normal activities."

Summer, here I cooome! I got books from the library and have plans so I'm not bored anymore :D My best friend Tess should be here any minute!

I have a SPEECH CONSULTANT appointment scheduled for July 30th at Seattle Children's Hospital.... I reallyyyyy hope I get approved because then I'll get to have speech classes every week. I really want this. I really really do.

**edit** I found out July 2nd, on my 2nd mapping the day after activation, that I don't need to get approved- I already am! EXCITING!! :)

Activation is July 1st. Yet another countdown begins... I'm actually kind of glad it's in a week, because that gives me a week before I wear it and REALLY devote myself to learning all that I can.

The way I look at it is, infants have one year (plus some!) to basically adjust to the world around them and learn about sound and I won't have this period of "silence" and "total brain devotion" to learning.... so I'll have to work extra hard. I can't just expect it all to come to me subconsciously although I do think our brains can be extraordinarily self-adjusting!

I plan to listen to
(See my Useful Links on right) online spoken word-tests, pitch perception, lots of listening and asking people what the sound is, and whatever resources the hospital can give me or Hearing Journey's resources. Any other ideas, folks?

I'm afraid to do the pitch perception test after activation, because I tried so hard on the pitch perception test so many times and did fairly well but not as well as I'd like.... and I'm afraid that my pitch perception score will only improve a small amount...... it's the big "A" that gets me here- ANTICIPATION. But it's also what sustains me ! Excited, excited.... :D

Just a funny note: I met some deaf customers at my Starbucks the other day, and they were surprised to find out I was deaf when they asked how I could sign. One of them mentioned they grew up with the oral method and I accidentally burst out with, "I wish I had grown up oral deaf! Lucky!" --- they both looked at me, amused. Yes, that isn't something most deaf people would say.