Bionically Yours

Juxtaposition of Teaching Sign

2009-10-26T21:01:00.000-07:00

So,

I often teach sign & seek out opportunities to do so. I just got back from teaching a fun group of RAs (resident assistants) sign at one of the UW dorms.

As always, I provided some quick background information & an explanation of the difference between ASL, English, and PSE (pidgeon) sign as to clue the learners in on that while *I* personally may sign "How are you?", that this is not uniform for ASL. An ASL user would simply sign, "How you?"

I found myself this time, acutely conscious, of how I kept showing BOTH the ASL and English signs. Really, it is better people are educated that the way *I* sign is not the only way and most importantly: ASL is a separate language that has its own grammar structure. It is not just a way to "represent" English although that is the way I choose to use it. If they were to encounter a Deaf person, I want people to walk away knowing that the Deaf person is not "stupid" or "illiterate" when they may write in ASL or "drop" the "is" from "My name is."

They are not even dropping the "is." They are signing THEIR language properly.

Something I've mentioned before is how I tried (and still try, I'll admit) to distance myself from the Deaf culture because of the lack of understanding that Deaf people have their own culture/customs which may come across as ignorance or even apathy to those unaware of it. It is not always a conscious decision and the older I get, the more I understand how "terrible" this choice sounds.

Some Deaf would say it's not their fault, that the hearing need to become educated. But as always, the perennial question here is: How do people get educated when they're UNAWARE they need to be? Of course, the Deaf are the ones who need to educate. Sometimes, this position gets old.

Some hearing would say the Deaf need to learn English (structure), after all, the predominant language is English. But would that solve the misunderstandings that may occur when (any) two cultures interact? I don't think so.

So I try to do my small part in the world to further understanding. The thing is, though? I'll let you in on a secret.

I enjoy it. I really, truly do. I love seeing people learn to communicate in another way. I love people's minds being expanded. I love being in front of crowds. It is a privilege for me.

I'll probably keep English and ASL in a juxtaposition when I teach. I feel I can't rightfully teach JUST one. It is a bit conflicting; these two modes, yet I find people are flexible enough & understand. So, I'll show you how to sign "How are you?" but I will also show "How you?"

Inside my veins runs information, therein lies an explanation...

2009-02-24T19:30:00.001-08:00

So...

It's been WAY too long!! Sorry, but again, I certainly don't lack anything to write about. I will be putting up posts from Dec-Feb, but will also be updating... no worries, loves! I guess it's just when I think about how long it's been... really, it doesn't make sense so I won't attempt to explain.

December 17th saw me marching into the University of Washington hospital, to get a blood test I had requested. One that would, hopefully, reveal just why it is that my ears refuse to yield any noise to me, and remain blissfully unactivated... unlike my wonderful implant.

I waited.... I waited....

And waited some more.

Frustration ensured. Then I finally had the sense to just sort of forget about it.

Despite the fact I was anxiously excited.

Part of it was that I hoped, with this diagnosis, I could effectively have a REASON for my deafness. But what really prompted me initially? My fear of going blind. Yes, a somewhat irrational fear to some of you, perhaps. The more I thought about it though.... the nagging question of "What if?" haunted me.

As a child, my parents were told of the dismal possibility of their firstborn child, already deaf, perhaps one day becoming blind. At nighttime, my mother would spell out letters in my hand in the dark, under the guise of it being a fun game. It was with that sudden memory that I, biting my lip, decided I HAD to know why I was deaf.

With deafness, also usually comes a degree of visual impairment if you have one of various syndromes. It was the thought of that hidden monster, waiting to pop out from under the bridge.

Medical folks are at this point, long accepting of the fact I am deaf. They no longer ask why. I wanted that "Why."

I finally got the answer.

After repeated calls, and me INSISTING on an answer when I was told they finally had one, on the almost last day of January, just when the month was drawing to a tired close, and asking them to have the surgeon email me the answer....

I laid down on the plush worn-out couch in an old dorm of mine, and FELT almost certain in a instinctual sense, that I knew the final result already, as though it being etched in my DNA entitled my body to sort of an intrinsic knowledge.

My phone vibrated, stirring me out of my half-asleep stupor. "Jay Rubenstein" was the sender.

On Fri, 30 Jan 2009 10:33 am, jay rubinstein wrote:
the test is positive for you having a genetic hearing loss

it would be worthwhile for you to come see me at some point to discuss the implications of this in the future

the questions you may have are likely too complex to discuss by email

I quickly typed back, "which connexin gene was it?"

-"GJB-2."

I found out later, through Dr. Google, that this gene is located on Chromosome 13*. This is the same gene that goes awry in Down Syndrome children, causes the characteristic whiteness in people with Waardenburg, and finally.... "nonsyndromic deafness."

And there we go.

While we are at it, I 110% recommend that you get tested for this if you are deaf and don't know why, or have deaf relatives! Even if you think they've run every test possible on you, get this test done because apparently, this was not run on me in 1989. Perhaps it was not around then.

It does have implications, which I will cover in my next post, including having deaf children, because it is GENETIC.

My reaction? To come soon! That is definitely a whole another post in itself.... But think about this. I am 19 years old. Ever since I was diagnosed at six months old, with profound deafness, nobody has had an answer. The best given us was simply "it's probably genetic."

*Source: http://ghr.nlm.nih.gov/gene=gjb2

Advantages of Speaking: Not Audist?

2008-12-04T20:04:00.000-08:00

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.

Perhaps I need to just cry

2008-11-19T10:55:00.000-08:00

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.

Election Day 2008!

2008-11-04T07:18:00.001-08:00

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!!!!

2008-11-03T03:33:00.000-08:00

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.

Question

2008-10-05T23:22:00.000-07:00

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?

:)

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

2008-09-28T02:00:00.000-07:00

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 http://www.blogger.com/www.cuedspeech.com that said:

Speech
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)

CPR Class

2008-09-27T05:14:00.000-07:00

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.

Cochlear Implants & Deaf Culture

2008-09-24T17:00:00.000-07:00

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.

Implants and water

2008-09-07T21:50:00.000-07:00

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. :)

Ahhh!

2008-08-29T22:10:00.000-07:00

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!!

Pitch Perception Test- Real Time Reporting!

2008-07-03T16:35:00.000-07:00

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

2008-07-03T15:23:00.000-07:00

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)

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

Activation Day!

2008-07-01T20:55:00.001-07:00

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!

Stitches Out!!

2008-06-24T15:43:00.000-07:00

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.

Part 2 of Update (5 days postop)

2008-06-22T12:13:00.000-07:00

(Lovely 80s hair thanks to the bandage. This is me after they changed my bandage day after surgery and I'm holding the removed bandage... complete with the blood!)

So, the days following the surgery, my head didn't hurt THAT much, but that was mainly because I was so faithfully being administered medicine by Ian. But nights and early mornings were worse, I'd say. It was hard to find an easy position to sleep in and it often would flare up at night for some reason. Then when I'd wake up it was like my head had a reaction to the changing-of-positions that is waking up. But, it is now Sunday, nearly a WEEK after surgery already!! And my head has some trivial aching if I touch the stitches or the area around it. It's still a bit tender. I felt a little dizzy all day yesterday, but not OVERLY dizzy. I'm glad I have an appointment on Tuesday so I can ask them about this. Moving my head side to side doesn't cause any dizziness but it does cause my head to swim for a second. This morning, I put my finger in my left ear and WOAH. The room soared.

Nice, I can alter my sense of reality just by putting my finger in my ear.

It doesn't do that now though. It does hurt if I lie on that side though, but it's not a serious pain. It's just ..pain. The threads from the stitches itch my ear sometimes because they're kind of long and knotted off!! That was driving me crazy last night and the night before, but now it doesn't seem to be a problem.

Thank you to everyone who left a comment or was thinking of me or helped out in some way :) My journey is just starting!!! I am a cyborg, but not a fired-up one yet. Tony Stark, (Iron Man) get out of the way....

Activation is scheduled for July 1st. I don't think that it's to allow my head to heal, since I've heard of people getting activated very soon after surgery! I think it's more that their time flexibility is pretty tight and the Mappings take 3-4 hours each.

My goodness, I can't wait. But I'm also really nervous. But so far, I WANT to say I've noticed improvement, even without it being activated. I have NO clue how this would work. Maybe it's the "power of the mind" or maybe it's the nerves being momentarily startled, stirring to life by the gentle prod of the electrode array that is now in my cochlea. Whatever it is, sounds seem more ...sharp? To give an example, leaves and rocks still don't have the refreshing crunch-crunch that I imagine they should, but it seems more CLEAR where it's coming from and as though more of the intricateness of sound has been opened up to me. Dare I say, I hear more individualness than just a "whole" sound.... this is what I really aspired, hoped, wished for, with the surgery, because this will allow me to possibly learn some speech.

The other day, my father, sister, and I were taking a walk through this woody area. I was walking ahead of everyone, watching the dog bounce from bush to bush, and I heard my dad speak loudly. "Tasha." I turned around. It was a moment of surprise for both of us. It didn't automatically register as my name, but it didn't require much THINKING. It was almost like my mind processed it before I could, which is a huge difference.

What? What am I saying? Am I building myself up for too much? Perhaps- I'm still making sure I keep a rein on reality and on "low" expectations. But what could be the cause of this heightened sense of sound? And will it last? Only time will reveal.

5 Days After Surgery

2008-06-22T00:11:00.000-07:00

Sorry I haven't updated!! I've basically been letting myself use the excuse that I have to wait to find my camera cord to upload my pictures first!! :P Well, I just moved to my summer housing. Yes, I am on my own since Saturday (5 full days after surgery) I spent Monday and part of Tuesday at the hospital, Tuesday through Wednesday with Ian at my mom's house, Thursday at my mom's (while she was gone to work and 4 kids under the age of 14 were in said house), and Friday went to my dad's with my sister around 5pm.

It's a fraternity- they're letting girls live in it (along with some of the boys), for the summer. The whole summer is only $350 which is why I opted to live there. That, and I wanted to meet people. So far it's been REALLY boring... but I have a constant need to be entertained, to DO, or to be with SOMEBODY. So I have to get over that!

So, I woke up groggily this morning, having gotten little sleep because I was spending whatever last moment I could with my boyfriend before he left for a week. I wandered into the bathroom in the fraternity. I was shocked, seriously. "WHAT?! Is this actually a bathroom people USE?" So, later that day, after work, I cleaned it! :P It was DISGUSTING but surprisingly didn't take long. Take a wild guess at which one is the "before" and "after" picture. I bet you can't do it. ;-)

Anyway, so I'm doing really well!! There is not even much pain AT ALL. The monotony of my summer vacation thus far hurts more. Okay, I'll quit saying that :P....

But, I will admit I overestimated my ability to move around the first few days after surgery. I was surprised at how drugged up I was! They gave me oxycontin, percontin, green antibodies (clindamycin), colace (an anti-constipation medicine which I haven't been taking since I haven't had any need to, to say the least!) and suggested taking tylenol along with the oxycontin. So I was pretty darn drugged up. So drugged up, in fact, that I think this deserves its own post. :P So that is below, along with the SURGERY DAY post.

My experience as a college teenage girl with a partly shaved-head and 10 stitches have actually been very .. well, uneventful. I'm not embarrassed. The only time I felt mildly potentially put-off by it was when I was meeting people at my new summer home, to which I found a way to subtly interject the fact I got surgery. Everyone greeted it with enthusiastic reception or little reaction.

Hyah! My skin has been subjected to the sharp precision of a knife, my skull to the whirring mechanical drill, and then I have been put back together, tied off with black stitches. What do people really have to think about it anyway? So I don't care. No degree of vainness about the "shaved" spot is possessing me. In fact, I almost love it. I am constantly rubbing the shaved spot which feels intriguing with the short hair. None of my stitches are really where my hair was---just mainly very near the ear, where Ian pointed out, people DONT have hair on anyway. The only spot I have stitches on my hair is right above the earlobe. I count 3 stitches by touch and one of them is actually under hair.

The "bump" (omigod!) is there. I discovered it on Friday night, much to my horror and then fascination. Ok, so we end up with a bump. Huh. I was not told this. Someone showed me their bump as a "terrible" thing once. But I look at MINE as a new interesting thing to show off randomly. I have a bump on my head that nobody can see but you can feel.

So what? It is yet another testament of my body's strength to heal. I do get scared it'll rip through or something though....! It seems like the skin is awfully thin to have the device under... but no need to start building bridges that don't need to exist. I'll ask about that on Tuesday and probably amuse the staff as a result.

I don't even try to hide my head. If I wished to do so, it's EASY to hide with my hair. But for the first few days I wore a ponytail. People say it isn't easy to notice at all, since the stitches are behind my ear. This is a picture my sweet Ian took, when he was cleaning my stitches on Day 3 after surgery. It looks like a great deal of hair is missing, but
rest assured, it's easily hidden. It DOES seem like a lot, but how much compared to some of you, I'm not sure.

Experience 1: Walking to the store with Ian 2 days after surgery. Nobody noticed my ear at all, even though I had my hair in a ponytail. I felt a bit "exposed"... poor me, getting surgery. I was eager to show off my "battle scars!" and also curious to conduct my own little experiment on how many people noticed. They didn't seem to! I think it's because it's BEHIND the ear and really not visible from the front at all.

Experience 2: Standing in Seattle at nighttime, waiting for a bus to downtown on Saturday night.

Me: (Standing)
Random Guy: (Smiles at me as he walks past)
Me: (Smiles back)
RG: (Walks past me, stops, comes back)
RG: "Hey."
Me: "Hi." (Out loud)
RG: (Shooting an look at my head) "Hey, can you talk? I mean, do you talk?"

I can only assume he saw the stitches, or picked up on how quietly and possibly oddly I said "hi."

Me: *gestures* Kind of. (Out loud) "Mmmm..."
RG: "Cool hair."

And as I was ONLY wearing a ponytail.... I picked up on that he noticed my stitches, because he walked past and must've been looking at me from behind, before he came back with the intention to hit on me :P Thank you, nice random guy.

RG proceeded to ask me for my phone number and then on a date, to which I laughingly replied I had a boyfriend.

RG: "Aw man! Damn...Well.. okay."

Drugged

2008-06-19T03:19:00.000-07:00

I'm not sleeping
Oh no, I won't
I'm not sleeping
Wide awake
Wide awake
Wide awake

I'll stay this way
Keeping myself up

No sleep, no sleep.
Can't let myself fall into it

Wow, the drugs kept me singing mentally a steady rhythm of this little thing I came up with above. Keeping myself up, keeping myself up, not sleeping.... Yes. I REALLY did not want to sleep even though I knew it was something good for me. It was ARTIFICIAL tiredness, which is what bothered me. The fact the drugs were making me tired sporadically! I REALLY recommend just sleeping it all off though, were it not me.. of course, I don't take my own wise advice. Sleep is GREAT though. I just know that it really helped me and it really felt like it healed me more because my body had a chance to just shut down and focus on few things.

Goodness, though. At one point I was downright high. I was just laughing and laughing on my mom's huge bed, with Ian staring down at me before he erupted in giggles. I kept denying it until I realized it WAS true. I had been taking 3 tablets of oxycontin every 3 hours! It doesn't seem like a whole lot but believe me it is, when you're all drugged up. My head ACHED. Oh man, it did. It ached. I was just thankful my eye didn't hurt the way it did immediately after surgery.

I tried my best not to be a whiner and to keep everyone's spirits up, including my own. So I was steadfastly smiling, but this is already my personality anyway. It's kind of "Life is an adventure to be lived and it's better lived in the best spirits because that way you can experience the most, the best."

But there were very few moments I just wanted to be a whiner, but I wouldn't allow myself. And anyway, Ian treated me with such care that I had NO reason to need to whine. In fact, I was downright happy. He made the whole thing SO much better by being there and by showing me so much love and care. My siblings were sweet too. They made me a card and posted signs and balloons. My mom stayed overnight in the hospital and stayed the WHOLE time for the whole surgery (how sweet!!). It was really nice. She also got me a card. I had lots of calls and texts to my mom, from my friends and wonderful family.

(A BIG mental alarm went off in my head when I remembered the warning the doctors and pamphlet gave me: Stay away from static electricity. I didn't say anything, just oohed and ahhed over the decor and then avoided the balloons to such an extent that Ian had to laugh because he observed it.)

Ian disappeared the second night with a piece of gauze wrap, for a few minutes. He reappeared with a teddy bear with gauze wrapped around its head. "Bionic Bear," Ian said as he gave it to me. I seriously smiled, even though my head throbbed when I did it. It all made me want to get more surgeries just for the care factor!

I remember getting scared though, because I was scared irrationally that Ian would leave out of nowhere, so I kept asking him not to go and I was just really drugged up at that time. Things seemed to swim around and I thought of

Somebody calls you, you answer quite slowly,
A girl with kaleidoscope eyes...... (Lucy In The Sky With Diamonds, -The Beatles)

I hated being tired and out of it- and FEELING slow. I could feel my mental reflexes stretching painfully slow- lazily and languidly. But the pain wasn't bad at all--- but I was definitely begging for medicine at some points. When my head would start to really hurt, I'd ask Ian, "Is it time for the medicine yet?" and usually it would be about 40 minutes before it was time for the next dose so the medicine worked and wore off pretty reliably. But, after using it Monday, Tuesday, and Wednesday, it stopped being an effective pain-reliever. I'm not sure why. I was taking Tylenol with the painkillers, which helped a LOT. My jaw hurt to open it too wide.

Nevertheless:

Monday: Operation at 1pm. It took about 3-4 hours, oddly. Then I was awake 40 minutes after they let my mom in the room. I had a really nice visit with my mom and Nick, a friend of mine that came to visit. I got a PB&J sandwich but felt a bit nauseous and not hungry, so I saved it. When I did eat it a hour later, it tasted GREAT but it ached to open my mouth too wide because it makes my ear move.

Tuesday: Left hospital at about 11am, got home about noon. Ian was there 20 minutes after I arrived home.

Wednesday: Walked a mile with Ian, to get some Starbucks and a movie and get out of the house! That was nice! Later on, walked to the gas station for energy drinks and doughnuts at night, with a refreshing cool breeze blowing on the shaved spot on my head the whole walk. We watched a really good movie.

Thursday: Seemed to take a turn- I was really happy about the day before. But today, I was just SO tired and kept falling asleep randomly during the day. That was when I started to get really annoyed with the medicine.

Friday: Didn't do much- went to sleep late after playing Mario Party 7 with my sisters, laughing a LOT, concocting an apple spice drink for all of us, and then eating a cup of noodles soup while watching a movie. I sent Ian an email from my laptop at about 8am! I didn't realize it was that late that I went to sleep. Oops. Then I slept 6-7 hours although it felt much longer. I took a LONG bath, with a newspaper and ... grape juice and pistachios (along with a cup to put the shells in!!) that my sister Kayla provided for me. Kayla dutifully tried, without anyone asking her to, to make sure I was taking my medicine on top of that. Yes, it was indeed a solitary party in the tub for me!! Then, I left to my dad's with my other sister later that day. We went on a walk.

So, I got the MOST rest when Ian was there :P I can't say thanks enough for cleaning the "sutures" and making sure I got rest and the medicines on time!! And those were the first 3 days after surgery---- I still continued to rest more than usual on Friday and Saturday though, but it wasn't really hard. You would think it would be more difficult but I've been lucky- pain management was really good and my head seems to be really healing cleanly and nicely.

It was really good how I would be woken up, even if I was deep asleep, to take my medicines. That was part of the pain management that really, I believe, contributed to me being able to be up and about so quickly. I stayed in the hospital overnight where they woke me up to give me medicine (it was hard to sleep though, sometimes. Very uncomfortable)- and then I had someone who set alarms on his cell phone to wake me up to give me medicine. I also had a piece of paper that had all the times for medicines listed, as not to miss any and to check them off. Organization is REALLY good and benefits everybody in the long run.

OPERATING ROOM

2008-06-18T12:01:00.000-07:00

It wasn't as cold as they warned me it would be. It was filled with equipment which I gazed at with fascinated interest. It did creep me out the way the big doors slowly swung open automatically as two people wheeled me in. It was like being on a movie set, honestly. It didn't feel real because of the room being so big and there being people unmasked and just talking and cleaning up instead of all uniformed technicians ready to operate at the drop of a pin, as I had expected.

Before I got to the table, I began asking them if the audiologist would be there and I wanted to tell them not to shave a lot off, but didn't ask. They actually stopped moving me for a few minutes as they tried to decode what I was saying in my quiet voice and my sloppy handwriting due to laying down.

The bed was pushed up against a steel table. They told me to move over and I moved over, thinking it was a rather primitive way to transport me between beds, but hey, if it works, who's to complain?

The anesthesia was pushed through the tube right into my veins....it wasn't noticeable. It was a bit cold-feeling but that was all. Then, the anesthesiologist put on the mask and I said, "Wait! Stop!"

I wanted to ask if Tina, the audiologist, would be there to check the device was working or if ANYONE would check it before because I really don't want to get my head cracked open again if it doesn't work! For some reason, right now, after operation, I find it a silly worry. OF course they have had to check right? But at the time, I was just really worried that all that would be for nothing, all because someone assumed the implant's electrodes were functional and worked.

But, I couldn't find simple enough words to voice, so I asked for a paper and pen. Surprisingly, they were able to extract some from someone's pocket, and then it was discovered I had to write with my left hand (not my usual hand). So I attempted to write, with an IV in my other arm, laying in an operating room with people in masks surrounding me. I could feel the bemusement. Somebody kindly held the paper for me since it was moving. But I gave up after a minute and half and just said, "Never mind" and laid back down.

The anesthesiologist looked at me a moment. Poor guy probably thought I was going to interrupt him again. I stared straight ahead, determined not to let worries get to me and reminding myself they were professional competent staff that I trusted. I was still psyched and ready to rock n roll! I was really excited. Here I am, in the ACTUAL OPERATING ROOM. Whoo, here we go! I looked at the bright light straight ahead and the oxygen mask was put on me...... that was all I remember. I don't remember falling asleep. The IV was already hitting though when I was writing- I could feel it! It was funny because I was determined to fight it and I was winning.

You really have to just surrender to it though. I asked them while waiting to go in the OR what happened if I woke up during the operation or if I was awake and they didn't know it--- but that obviously didn't happen. And what made it easier to accept was knowing that I had to just let go to the anesthesia. It's funny though that the last thing I was looking at was a BRIGHT WHITE LIGHT.

It's a bit odd to me though that I really don't remember falling asleep. The bright white light, then the room I was in after surgery! I wonder, how did they transport me into the different bed? I really also wish they could've taken pictures. I wonder how much blood there was, if any. I can't wait to ask the surgeon this when I see him again!

The Surgery!

2008-06-18T12:00:00.000-07:00

The morning started off as sort of a fiasco. I was worried my surgery would be canceled, because my mom was fighting traffic after a late start from her town to my boyfriend's town. The distance between both is about a hour long! My check-in time at the surgery pavilion (It sounds so fancy, "pavilion!" Like "Please head to the Surgery Pavilion, to get your head drilled into, which is next to the Fair Pavilion, next to the clowns and merry-go-round) was for 11am.

It was 10:40am. She was still not there. I paced, while trying to seem as though I wasn't pacing. The hospital is 30 minutes from my boyfriend's place, which I was staying at in-between moving to my summer housing and school housing, because my mom was gone in Vancouver, WA all weekend moving her new husband's things to her town.

I calmly turned on my hair straightener and grabbed my hairbrush after a sleepy Ian asked if I was ready, his eyebrows emphasizing the question.

I had slept VERY well. The bed was ridiculously comfortable. Its comfort was immediately noticed, even though I fought the allure of sleeping. I was too preoccupied with reading one of the Little House books (by Laura Ingalls Wilder).

I wanted to sleep with happy thoughts in my head, undisturbed by dreams. These books have always been really enjoyable to me- a time that was much simpler and where people did what they had to do which included the barest of essentials- hunting your own meal, cooking it, sewing clothes, and buying cows for milk and butter. I really wanted to post but all I would've had to say would have been, "I have surprisingly little feeling about this!" I WAS excited but also nervous... the IV? How would that go? How long would it all take? Would I get to see the operating room or be mostly out first? Will my face nerves be ok? (After I woke up, I IMMEDIATELY smiled and winked. Phew, all fine. I'd continue to do this at intervals through the whole stay.)

My mom arrived at 10:45 and there was a frantic rush to load everything into the car (including my things from the dorm! The picture is my dorm room, in the throes of being packed. Fortunately everything was in suitcases when we packed it!!)

My mom's car groaned down to the windows! I ran back into the house, turned off my straightener which I had almost forgotten was on! Pulling a brush through my hair quickly before pulling it into a ponytail, I applied some lip gloss afterwards. Then I ran!

There was some confusion about Ian, because I had thought he would ride home with us after the surgery, but he said he would drive. So my mom and him exchanged cell numbers and he withdrew into the darkness of his garage as my mom backed out into the bright sunshine of the day. He signed quickly, "I love you too! Good luck! I'll be praying for you!" I waved and happily settled back against my chair.

My mom, frantic, took the wrong turn. I directed her to the highway, and then we got onto the express lane, which TOTALLY went past the hospital/University of WA exit. Oh no! So, she cleverly maneuvered back while dialing numbers on her cell. She got ahold of somebody who said it was fine and that the surgery would still be on. Phew! So, we parked, chatting happily. My mom looked at me and asked, "Aren't you nervous? You don't seem to have ANY opinion but I keep saying to myself, you must be!" I shrugged. "I really don't think much of it.. I'm just glad it's finally the day. I'm more nervous about the IV than the surgery itself, almost." We laughed, the sound echoing in the garage. (This was something I never heard or realized until after the surgery!!) I realized I forgot my camera (an essential!!) so we headed to the car again. I grabbed my backpack and she didn't know I had "so much" which she would have to carry later (she was right), so we walked 10 feet back, and I grabbed only my makeup case, my camera, and a notebook.

Finally!! We got to the actual hospital. My mom observed how fancy the lobby of the parking garage was before the elevators swept us up to the second floor.

I bounced in, my mom walking behind. We went through the preliminary questions and I got my hospital bracelet and my allergy bracelet. (I'm allergic to amoxicillin, a form of penicillin. They don't use this in the operation at all, but it was a precaution.) Then we waited. It wasn't a long wait at all before they called us into the back room. It was all sterile, many rooms curtained, and I started to get a LITTLE nervous.

I had to pee in a cup, change into a hospital gown (oh so fashionable), and wait. Picture-taking occurred, much to my mom's amusement. ("My goodness, Tasha! You really are silly. That camera!") The anesthesiologist came in to introduce himself, then a doctor, then a nurse. Then MORE questions by the nurse on duty. The usual: "Do you feel ok today? When was the last time you ate?" etc. They took my blood pressure, and then my temperature which was normal. My mom was surprised and said so, because I usually have a high temperature whenever medical personnel take my temperature!

More waiting. Then, they came in with the IV supplies. I told them to do my upper arm, which I am pretty comfortable with because of giving blood. I hate the thought of a needle piercing the thin skin on top of my hand or on my wrist. It makes me shudder inwardly, and it had been a source of some of my worries! So, that was a relief they did the upper arm :) My mom took my camera and began snapping pictures! Thanks Mom! :D I was glad because I LOVE having "pictures for posterity," as the hospital staff was informed. I didn't even know my arm bled until I looked down, because I was too busy looking at the camera!

I began to get a bit nervous, which I was successfully concealing, until my mom caught an expression I made for a split moment and captured it forever on the camera. This is me looking.. well, nervous. "They're going to drill a hole in my head and cut my skin in a matter of MINUTES." Everybody was very nice. The interpreter they had provided for me was being really silly though because she was being overly pushy and I didn't want her in the operating room or ANYWHERE near it! I was lipreading most of the dialogue between everyone or preferring to use my mom, so we sent her away. She didn't seem happy at all and was really pushy about it until my mom and the nurse confronted her calmly and told her it was within my rights to not have an interpreter. I tried to ignore this ridiculous happening because after all, it was my first surgery!

A resident doctor discovered I still had my bra on, and he asked if it had metal in it. I wasn't sure and I had my IV in and a gown on and everything!! But oddly enough I had used the bra that has a bad strap, so it was easily untied and nothing was disturbed! PROVIDENCE! Yay!

They wheeled me away and I thought, "Time to rock n roll!"

AHH Let Me Out Of Here!!!

2008-06-17T10:38:00.000-07:00

You would think my mom was the patient here, not me. She is dilly-dallying SO much. All I want to do is GET OUT OF HERE. It's already almost 11am, which feels late to me. I have eaten. I have sat in bed...BORED. I have even typed a blog and sent some emails!! I just want out of here... I can feel myself approaching that EDGE of grumpiness where I just want to cry and throw a tantrum if I don't get out of this blasted hospital. They are ready to let me out. My IV has been out for what seems like a hour.I have attempted to brush my hair. I have paced.

Somebody please call my mom and tell her to LET ME OUT, SERIOUSLY.

This is me being bored to death.

Also? I got the implant in my left ear as it turns out! So I could use my hearing aid (my ONLY one) in my right one! :D But will somebody tell me why it seems SO loud? My hearing aid is on volume 1 and I can still hear way too much.

Barefooted and Bandaged

2008-06-17T08:06:00.000-07:00

Hi!

You won't guess where I'm writing this from! It is 8:07 am my time. I went in for the surgery about 1pm yesterday (Monday.)

I stayed overnight but my mom did too, so I was glad because then I at least had someone there, even if she was sleeping most of the time, haha!!

So, right now, I'm standing, barefooted, in a hospital gown. The IV tape and IV is in my right arm, but it isn't attached to anything.... I'm using the computer in my hospital room which I happily noticed had internet explorer. My mom suggested I use it, after I whined a bit just now about how TV was SOOOOO boring and about my eye. My left eye REALLY hurts, like some kind of really bad localized headache... and so does my ear, so I'm keeping my eye shut. So, even though she is probably horrified I'm using this computer, she's too tired to care and she knows what a diversion the internet is for me! :)

My bandages got changed this morning, much to my relief, because it had felt like it was draining or bleeding or SOMETHING, but the doctor said everything looked great. No drainage at all, just some swelling near my upper lobe.

And yes, there is a BIG portion of hair gone.... way more than I thought there would be. I whimpered slightly, thinking about how I had wanted to tell them to please cut as little as possible, and partly surprised at how much WAS gone. I then shrugged. What is there that I can really do about it anyway? Hopefully it gets better!! So I just have to give it some time. My hair is actually finally in a cute bandage-do. It's better than yesterday where my hair was literally sticking up EVERYWHERE. Right now, I just look like I have some 80s aerobics hairdo.... "(PUMP IT UP! Left foot up!") anyone? :D

The chunk of hair that came out came out yesterday when I was feeling my head, in front of my friend Nick and my mom. They both immediately stared at me to gauge my reaction, since I have been trying SO hard to grow my hair out after cutting it really short last year. I stared at the hair. I'll admit, part of me wanted to cry or complain, but I was MORE amused by it than upset. I sighed, hair hanging from my hand, then... "Get the camera, Mom!"

Later, I decided I wanted to keep it (I'm a silly person)... and I noticed PINK streaks in it!! I had light purple streaks in my hair for awhile and some of it (especially on the underside) hadn't come out yet but instead faded to a pretty blond and a fun pink. So... I was delighted in an odd way. "Sweet! The hair that came out has PINK in it! Hah! What a thing to show people!"

I was able to see the side of my head because I brought my camera!! I have pictures of almost everything! Including the first minute after I had my gown on, up till me standing next to this computer. My mom said repeatedly how much of a ham I was. It's true; I'll admit it! I grinned at the camera while they put the IV in. It was actually a GREAT diversion, so I'd recommend doing that for any procedure that is hard NOT to think about or notice (needles, shots, etc).

Oddly, from what I've eaten so far, the food is REALLY good! In fact, I have something called "The Great Northwest Breakfast" coming soon.

"Your choice of Fluffy Scrambled Eggs, or Low Cholesterol Scrambled Eggs. Served with Bacon & Breakfast Potatoes."

Yesterday, a few hours after I woke up, I had some diet pepsi (And a lot of people say that stuff is toxic because of the aspartame (artifical sweetener) in it) so I'm surprised this was an option. I also had a CRAZILY delicious peanut butter and jelly sandwich. Yum....I have a feeling I won't want to chew much, which is why I happily ordered eggs and potatoes. They're both soft!

As for the pain.... I've basically had 2 painkiller pills EVERY 4 hours and I ask for more sooner than 4 hours because the pain is ... well, painful! But it isn't HORRIBLE. I only had a blotch of blood. The nurse told my mom that some people had SO much bleeding that it'd bleed through the bandages. So I've been fortunate. But let's just say: I won't be stopping taking pain pills for awhile! The eye gets SO painful. I feel a LITTLE dizzy but not bad. I heard what sounded like loud screaming in my left ear, anytime I'd get up to walk to the bathroom and sat down. Not that bad though. It's not constant at all.

By the way: In the end, I REALLY AM glad I stayed overnight!! It's been nice. Delicious food, a bed that moves up and down, my mom nearby, and my camera if I want it.

I can't wait to go home though! I just hope it isn't stressful because there's kids at the house and it's a BIG mess since they just moved my stepdad's stuff (1500 sq feet) into a house! Mainly though, I can't wait to see everyone!! My siblings, my stepdad, my dad (hopefully), my best friend Tess, and Ian. I'm hoping to call Abby (my old best friend) at some point. I am so lucky to have so many people. :)

Pictures'n'more later! <3my>Northwest Breakfast is here

T-Countdown.....3 days?

2008-06-13T18:06:00.000-07:00

So, after scaring my poor, sweet boyfriend because I was having all the symptoms of a stroke (?!) except for the headache... haha. Never mind. Basically, I was acting weird like almost out of it and unable to follow with a constant train of thought, had HIGH sensitivity to light, and he thought one side of my face was lopsided. (My smile is lopsided, as it turns out. This we know now.) Not a result of a stroke or anything! Either way, I'm fine. :P But he had me whimpering when I looked in the mirror. My smile IS not balanced. Is my eye really twitching? Oh nooo!! But it is great to know I have someone who cares SO much that he would call the paramedics just to make sure. Better safe, than sorry, as the adage goes.

The arm is MASSIVELY better. All the pain and weird symptoms were due to the shot. Odd..... because normally I don't get more than aching from a shot.

My mom is IMPOSSIBLE to reach despite her having a ton of phone numbers with which to reach her at and despite her husband having a cell too, they both rarely answer or at least when *I* call. GRRR. It's really really aggravating. So, I just called the hospital to find out when I'm supposed to be there.

The actual surgery should be around 1pm, but I need to be there at 11am, in the surgery ward! No food after midnight, clear drinks till 7am. :) I think I got it! Not too bad. My goodness! The amount of digits I'm holding up really shocks me... only 3 days left?!

Ouch?

2008-06-12T05:02:00.000-07:00

So my ipod touch has been successfully keeping me entertained!! I FINALLY got ...*somewhat* packed. Much to my surprise, so far it seems like the majority of my clothes will fit in this medium sized pink duffel bag I have, so moving out of the dorm won't be too bad.

Perhaps due to the fact they've been serving pasta the WHOLE year, or to my arm hurting, I threw away a whole plate of spaghetti because it turned out I wasn't hungry anymore after taking a few bites of it. I did drink some Vanilla coke..... my guilty indulgence. I wish there was a way to donate my spaghetti....:P As it is, I hate wasting ANYTHING.

The internet connections in my dorm seem to be REALLY bad ever since people started moving out for summer, so it's annoying because I can barely get a connection and when I do, I have to make sure not to move at all!

My arm is much better and I decided not to call the medical clinic to ask them about it, since it's not a big issue at all right now. But last night, oooo. I woke up in insane pain but I just went back to sleep. Gotta love sleep. My arm shouts out to me in angry trepidation anytime I try to move it too much, but I suspect this will go away by the end of today.

Just a note to myself so I remember: I work at 7:30am Saturday. Then on Sunday I have work at noon til 4pm. Not bad at all.

I have to take my earrings out for the surgery..... which wouldn't be a problem IF I didn't have these earrings that are hard to get in since it's got a TINY ball that screws in and how it does that, I have NO clue. I actually had to have a tattoo shop guy put it in for me! Also? Look at my ears. Count 'em!

(I was going to put a picture in but I can't find my connect for the camera! Nevertheless it's on my camera.)

I have 5 holes in my right ear, and 3 in my left ear!! Fortunately, no other piercings :P

Friday, Saturday, Sunday...... my goodness. It will really come fast. Right now, I'm not sure how I'm feeling. It's more just a FACT. "Okay, I'm getting surgery on Monday." Haha.

Cheerfully Yours

2008-06-11T23:23:00.000-07:00

Wow. I'm just amazed I'm not stressed and that I'm actually in a really calm state of mind. I'm dealing with things as they come. My favorite uncle of all time, who has basically always been amazing, seems pretty upset with me. He told me he was totally not for the surgery. He's worried about me.

Again, it baffles me how people could be so against it. Okay, I know maybe they're thinking of it in the most technical terms or with the craziest inhibitions or ideas (a hole in the skull, a transplant from a dead person, BRAIN surgery, anyone?) but I have explained clearly to him that it's a "simple" procedure in a sense. At no point is the brain exposed or anything.

But that isn't his problem. His problem is he fears it'll destroy me if it doesn't work. He also says I've made it this far in life, successfully, without getting one, so I don't "need" one- the degree of pleading intensity with which I presented my reasons to him worried him that I was convinced I needed one. He also is doubtful of the technology and how much better it is now.

But again, we all define "work" differently. And what I want the most for everyone besides me, right now, is to just STOP worrying. I want them to know I truly care for them and that I KNOW they care for me as well. It shouldn't be this big of an issue. I think the thing is that people weren't expecting this. All they knew was I was supposedly flourishing in college and loving it (I am) but then they heard I was getting the surgery...so it was out of nowhere for them.

One thing I would take back, friends, and mark my words if you're deliberating getting the surgery--- Is to truly take the time to let the ones that matter in your life know about this so they have time to adjust to the thought. For me, the case has been that the wonderful people in my life care about me to such a wild degree that they would fear for me more, perhaps more than I fear for myself.

Let people know what they need to know- TRULY explain to them... you might be surprised at the myths that arise or at their worries that you would never have expected them to possess. It seems self-evident the reasons I'm getting this- after all, there's only one thing this surgery is intended for: hearing. But a lot more people than you would expect are meeting it with such resistance that I truly believe that perhaps I didn't think about them enough. I broke the news carefully to my mother and some other people in my life after trying to think of how to say it, and they seemed to take it well, but I just kind of pitched it out of the dark to others and kind of assumed they'd just accept it.

That's one thing I would tell people getting ANY kind of surgery to NOT do. Yes, they "should" be happy for you but chances are they fear for you more. Don't feel discouraged if people seem to be showing resistance or acting like you didn't research into "other options" enough, because if you did, then you did. All it means is they care about you so deeply, so fiercely, that they want to make sure you have the best options on your plate before you start to dig in.

Something else to add: My arm hurts a LOT. I got the vaccine today, as I mentioned. But I had a bizarre dream involving crazy nurses trapping me in a dark room, and me becoming so disoriented from the shot that I got dizzy and couldn't write so when they left (locking the door!) to get somebody, I tried to climb out of a window but could barely walk. Odd, but not too bad. But then I woke up. I WAS dizzy and stumbled around my room in a frightening fog.

I'm not sure what was up with that. I no longer feel dizzy, and perhaps part of it was just all in my head, but my arm continues to hurt a lot, to where I can't lift it without it hurting A LOT. But I exclaim, "Small beans!" It would be funny if the vaccine was much more painful than the whole surgery process. I WILL get it checked out tomorrow though if the pain persists.

I roll my eyes: What's next? The fact it's almost the weekend is not any solace to me since Starbucks seems to truly love giving me the weekend shifts. But money is money and money means enjoyment of some things, to some degree! Nothing can ever beat good ol' fashioned time though, which I will hopefully be partaking in a lot after my surgery with some certain people. Whoo! And summer is here!!

Pre-Op!!

2008-06-11T17:45:00.000-07:00

Pre-op was today!!

I went to a concert last night, which struck me as: This is MY LAST CONCERT BEFORE THE IMPLANT! My goodness! It was kind of an exciting thought that I kept suppressed even though I was wondering if I should be grinning inwardly as much as I was.

I'll continue this post later!

My Titles Fail

2008-06-09T21:57:00.000-07:00

Alright, so I picked up my ipod touch from my dad's work.

While there I figured out completely his reluctance and avoidance of any conversation about the implant surgery. He asked casually about the "hole." Get this: He thought I was going to have a HOLE in my head for the rest of my life! No wonder he didn't like the thought!! Ah, Dad, I do love you ! Aw. He did say, "Oh so the surgery doesn't make you have a hole anymore?" The keyword being ANYMORE. Did it ever leave a "hole?" I don't blame him for the misconception because I think I did sort of think that when I was younger.

I still think many people don't really "get" how it'll work and how noninvasive it will look.

So far, the ipod touch is really great! :) But funnily enough, I haven't uploaded any music on it yet! I HAVE, however, downloaded the Otter Movie (an ADORABLE short 1 minute and 24 seconds clip that never fails to make me smile).

Also? I heard just fine after my hearing aid had "warmed up" for awhile. I am just sad that I don't have a left-ear mold for the hearing aid, so that means unless I have some residual hearing left after the surgery, I won't be able to hear ANYTHING till the activation. The soonest available date for a mold to be made for the left ear was AFTER surgery, and then fast shipping would have been extra money. :( But hopefully I'll have some residual hearing?? Who knows....

Not much else to say. One more day till the pre-op, which is at 1pm....

"Every ceiling, when reached, becomes a floor, upon which one walks as a matter of course and prescriptive right." -Aldous Huxley

Quick Update

2008-06-09T10:39:00.000-07:00

Good morning!

First of all, I'd like to clarify that I am NOT having second thoughts at all. :) It was just scary to see 3 "failures" all in ONE night. What are the odds?!

But there have been more wonderful stories (like the bloggers on the world wide web and the people from HearingJourney). The bad stories tend to stick to your mind more because you think, "That could happen to me... yikes." I don't want to be a statistic of CI "failure." There are a lot of scary side effects if you think about it (If you haven't gotten the CI, STOP thinking about it now!! *smile*) I know the surgeon has a face nerve monitor but it still worries me, even though my surgeon is Jay Rubenstein and has done a TON of CI surgeries.

In fact, my sweet and eager grandma did some research when I told her I was getting the CI surgery. She said, "If you get Jay Rubenstein, that's really really good!" Then she gave me a list of his credentials, which were, well, "really really good!" I have no idea how she found out who was the "best" CI surgeon in her opinion, but I wound up getting him! So I immediately recognized his name when I found out he was going to be the surgeon. That IS some reassurance at least. And it helps to have my questions answered and to meet the team, so I think I'll definitely do that on my pre-op day (Day after TOMORROW!!)

I finally remembered what I wanted to buy from the store- yarn! I plan to make use of the one day I'll be in bed to crotchet something. But if given the chance, I'll probably sit outside and talk to my mom and stepdad since I don't get to see them much, especially since I live at school over summer. :( I AM sad about that, but I wanted to stay in Seattle. I didn't feel like it was going to be much fun if I stayed in my hometown when my mom and stepdad will both be working a lot. However, I WILL be going to California with them and all the 7 kids!!! (My mom got remarried this past December and he has 6 kids. 4 are adopted and 2 are kids from his past marriage. One is autistic and one is "slow." They're great kids but it can be CRAZY with ALL of them! But as for "blood-related siblings" I only have one, my wonderful sister Tori who is 4 years and 7 months younger than me.)

That is something I've been thinking about too, by the way! The kids might not all understand or know that I'm getting surgery, and hopefully the stitches will be as small as Tom's!! (Size of his surgeon's thumbnail. Hopefully his surgeon wasn't a BIG person!! Haha)

So when I do see them again (they live with their real mother the majority of the time), I wonder if I'll calmly say, "Hey, do you guys think magnets will stick to your head?" They'll of course try and say "No!" I'll then put a magnet on my head and poof! It sticks! :P The younger ones will really get a kick out of that, and the oldest boy who is 14, probably will too! They probably won't believe it until they try for themselves!

Also, Tom, you don't have a blog, so I can't reach you! I was wondering what you meant awhile ago when you suggested I put my journey on HearingJourney. I couldn't find any specific place to put all this in! It seems like there's just areas for questions, etc, not a whole long blog!

Oddly, when I put on my hearing aid today, everything seemed TOO quiet. It made me nervous, so I changed the battery while thinking, "If the surgery works then I'll never have to buy batteries again, just pull them out of the charger!!! Yay!!" (I have spent SO much money on batteries for my hearing aid over the years.) But even after the battery was changed, it sounded too quiet. I can hear the keyboard making sounds every time I type something and the now-familiar white sound of traffic but somehow I have an odd feeling that it's quieter than it normally is. I feel a bit disturbed by this but I'm hoping it's just in my head or that my hearing aid just needs to be cleaned or repaired. And at least I can still hear many subtle sounds. Maybe I just need to give my nerves time to respond?

Well, I'm off to my dad's work to pick up my IPOD!!!! Whee! Hope you all have a great day.

I am so scared now!

2008-06-08T08:54:00.000-07:00

---Sorry this is so long. I hope you all read it anyway.---

I went to this annual "deaf picnic" on Friday which is something the Sertoma Club has been doing for at least as long as I've been in kindergarten- perhaps even before then. But essentially, that is around at least 13 years!! So these great folks gather money or solicit donations for the delicious burgers, plethora of chips, a signing clown that makes balloon animals, and face-painting. Deaf children are shuttled from their elementary schools from as far as 40 miles away to this picnic, so they can meet other deaf children and enjoy a day in which they can communicate with EVERYONE. I went pretty consistently in elementary and junior high since they were taking the deaf children on the buses anyway, and my best friend and I were ALWAYS eager for an excuse to miss school!

The real attraction is not the food (there's never much there, despite the deliciousness!) nor the blaring fire truck, or the playground, but the singular feeling of unity.

But as I got older and changed school districts, I stopped going as consistently, but would go if reminded about it and offered a ride. So, this year, someone from elementary school brought it up and as usual, I had forgotten completely about it. Then, my best friend offered to pick me up all the way from Seattle and bring me back to her home and then drive me to the picnic the next day, since she was going anyway. I hemmed and hawed- "Are you SURE? Gas is so expensive!" and "Who will be there??" but then jumped in the shower. 40 short minutes later, she picked me up.

We stopped at Starbucks for our usual obligatory caffeine fix for our drive home.

So the next day, we got up not-so-early (10am) and got ready. I got stuck with the short end because of being the last one to get up (as usual). The shower water was COMPLETELY cold, and chilled to the bone, I jumped out of the downstairs shower and ran to her mother's shower. It was warm for about, oh, 10 seconds, taunting me with the false hope of a not HOT shower, but at least warm. Strawberry conditioner blinding me, I ran across the hall, my only goal being getting the conditioner out.

With that start, you would've thought I would be grumpy. But nope! I was amused. It really woke me up too which was a bonus. We headed to the picnic, me being her trusty "road guide" with the Mapquest print-out. After several frantic signing RIGHT before the exit ("Tess! Listen to me! I HAVE THE PRINTOUT. I am right! Now go left at the next ramp." -"What? Left?" Me: "Yes." But she didn't think it was correct for whatever reason. (This always happens with us, haha.) Then finally I just resorted to gesturing wildly with my hands on her side of the car whenever we had to turn. There is nothing quite like giving directions to some deaf people. The fact they are looking at you means they are not looking completely at the road. *Gulp* And her driving, as much as I adore my wonderful best friend, already scares me!

We arrived at the picnic, Tess making a sharp turn to fit into an amazingly small parking space that we miraculously found and this being accompanied with my closed-mouthed shrieks (so she wouldn't know I was whimpering like a puppy separated from its mother). The car stopped and she brightly said, "Well! That was fun. We're here!" I stared at her. After a moment, I could only laugh and agree we were, indeed, here.

We got out and immediately stayed together, like magnets. We have been inseparable at every picnic and this was no different. If someone can't recognize one of us, they can usually always tell who the other one is and immediately deduct who the other one with her is!

I was surprised at how QUIET it seemed. It was still noisy- kids laughing but otherwise it was ridiculously quiet compared to what it would've sounded like with THAT many "talking" people. I was surprised I even thought about it. Would I have, before? Perhaps I am more deeply ingrained with my hearing aid and the sounds it brings me than I know. I liked the fact I could talk out loud and the majority would literally not hear me, and only see my lips move. I mouth pretty well, even though I still don't know how to pronounce many words or speak as fast as I sign! So I happily grabbed the chance to practice speaking out loud.

I saw many people from elementary school and a few from junior high, as well as the various teachers and interpreters, but it was definitely apparent that soon we might not go to the picnic in future years. I graduated in 2007 but still know some kids that haven't graduated yet. But we didn't recognize the majority of the people. Tess and I separated for a brief amount of time, in which it started raining. Hard! We all ducked for cover and lamented at the bizarre June weather.

Unlike past years, I kept my eyes peeled for any cochlear implant users. Tess and I were walking and I saw an adorable little girl with an implant, sitting by herself. I wondered if she knew sign and if the implant was a factor for her sitting by herself while most other kids were with someone else. Then, I saw a boy about 5 years old with an implant from what seemed like the Cochlear company. I immediately recognize their pieces because I greatly dislike the look of the processor. He was signing and without thinking, I looked at Tess and said, "That processor! I dislike it! I'm getting a CUTE one. I wonder why he isn't TALKING? I wonder if he can talk, I wonder how he feels about having an im-" before stopping. Tess was looking at me with a bemused expression. "Never mind," I sheepishly said. I only saw about 4 kids with implants out of the perhaps 100-200 people there.

Before I knew it, everyone except a group of about 15 people had left. The people remaining were friends from elementary school and many of them knew each other from high school. (Degrees of separation, anyone? If we didn't know someone in the group, we could easily make an connection with who we BOTH knew.) We decided to go to Red Robin's and we all crammed into a long table. We were told we were violating the fire code, so some of us split up into different tables.

We were all having fun. Finally, EASY communication in a crowd, in a noisy and busy environment. Hands were flying and LOTS of laughter was reigning. Fries were being consumed at an amazing rate and we kept the waitresses busy! So we decided to drive about 25 minutes north to a friend's house to keep it going.

So, long story made short. At one point I playfully turned over my friend Blaine's silver bracelet, very reminiscent of the "security" bracelets some kids had growing up. It said "Cochlear implant. No MRI/electromagnetic." I stared at him with sheer surprise. "WHAT? You have an IMPLANT? Why don't you use it?!" Everyone else stared at me because I was so out of the loop. I guess it was common knowledge he has one.

I said, "Did you know I'm getting one in about 2 weeks?!" He stared at me and opinions erupted. I was soon surrounded by people I've known since elementary school, all telling me "DON'T GET ONE, Tasha!! Don't do it." Blaine took my hand and told me to feel that familiar place just above and behind his ear. There was a BIG lump there and by big I mean big! Then someone interjected, "Doug, show her." Doug, who I hadn't known before that day, pulled off his hat and there was a wicked-looking white curved scar that was BIG too.

I stared stoically, trying to stay calm even though I felt an emerging sense of panic. I could feel myself blinking quicker, which is something I do unconsciously when I feel like I'm losing control.

"Look, you guys got those when you guys were like, 6 or 7 right? The procedure has gotten better!! There's probably a higher rate of success too. And you two were FORCED to, by your parents. I am making this decision on my own, which already automatically makes it better."

This guy, Travis, who until then had been sitting in a comfy big armchair calmly observing, interjected. "Hey, it's her choice." Directly addressing me, he asked how much I could hear. I felt tears threaten to well up but immediately pushed them away. "I can hear the music right now, and I can hear Phil over there talking, with my hearing aid." Travis looked back at the crowd and said, "Well. She already seems to hear more than most of us do with a hearing aid and likes it. Maybe it will work. Who knows. And like I said, it's her choice." The crowd paused, and then dissipated like a slow fog, back to what they were doing.

I had been sitting on the plush carpet, so I scooted over to the armchair. Kneeling by his knee and signing low so nobody could see me, I said, "Thanks for helping me out back there." Travis looked at me. "No problem. I just hope it all works out."

Feeling a bit lonely by this time- having just "outed" myself in a sense- I grabbed my notebook and began to sketch. But 40 minutes later, the pizza arrived and everyone seemed to have forgotten about it. So it all went well until WAY later that night. It was actually probably 9 or so hours later!

Someone else found out I was getting an implant and came up to me and said, "Honey, please don't do it. I got one too, when I was 21, and it didn't work. It doesn't work. I know how you feel- I wanted to hear too, and understand speech, and all of that." I finally lost it. Hot tears spilled out of my eyes, as Blaine, Stacia, Doug, and Phil gathered around me.

Tears kept running down my face, dripping down onto the comfy carpet. I said, "But I HAVE TO. I will NEVER know if I don't try! But you guys have seriously freaked me out! Look at Doug's scar! And Blaine... and now you too, Stacia? But I HAVE to try. I want this."

Realizing how scared they had made me, they gathered even closer and apologetically comforted me. Stacia hugged me and said, "I didn't try to learn, I don't think so. And I don't think Blaine did. He was only 7 and his parents forced him to. He did go to classes and all but I don't think it was quite as motivated as you were. It's okay. If anyone can do it, you can."

I started protesting- "But what about you guys? Maybe this is why I can't find much information on people who got this surgery when they were profoundly prelingually deaf, like us. What if this doesn't work for me...? But I HAVE to try. I'm not backing out."

Visions of a future danced in my head, of cruel scalpels, even crueler scars, and cruelest of them all- trauma.

Tears kept rolling down my face. I couldn't even care about how many people were seeing me cry, when I RARELY cry. (I have cried more since March than in YEARS.) I was just seriously terrified but still determined.

Blaine gathered me up in a hug and repeated the defenses I had given him earlier that day but using them as his genuine defenses. ("I was young. You're more motivated. It's your choice. You can hear with a hearing aid. You LIKE hearing with a hearing aid." Etc...)

Somewhat calmed down, because of their somewhat change of heart, AT LEAST REGARDING ME, I let it go. I was still shaken up though, but the rest of the night was really fun.

But where am I right now in my "journey?" Well, I have the pre-op appointment Wednesday- only 3 days. Then the SURGERY Monday.

I am utterly overwhelmed. I am FINALLY afraid. I don't know who to believe anymore, including myself. I don't know if I should believe in myself. I don't know what deaf people or ANY person would label "successful." Is hearing MORE.... enough to warrant getting a hole drilled in my head? I think so, if you truly want it. And I do. But for others, perhaps it is an extreme thing to do for more hearing.

I said before that deaf culture doesn't affect me. But maybe it does, more than I know. I don't want to look into the eyes of a deaf person and say, "I think you're wrong" or wonder at the many deaf children that don't have implants, even though I will say it to them kindly.

I wholeheartedly believe that sign language and hearing can co-exist in the same child and even profit them completely. I think that to keep your child deaf when you wouldn't deny an diabetic their insulin, or an amputee a new leg if they could get it- is totally unfair. I know diabetics don't have their own culture, but that to keep a child trapped in a world of silence- a world of communication barriers- just for "culture" is SO unfair. If I was a foreign immigrant, I wouldn't refuse to teach my child English just to preserve my culture. I would accept BOTH.

A "hearing person" at the get-together said "You should wait for better technology." I stared at her and thought, "So this is what it has come down to?" My parents WANTED to wait for better technology, so I understand the argument. But if there is NO better technology promised for the next 3 or so years, then you are condemning a child to a LIFETIME of silence, when they could have it NOW. But this brings up the issue of my parents- why didn't they choose to give me it "NOW" as opposed to waiting? Was it easier to NOT subject their baby to the knife? Or was technology not all that good back then? (Blaine's lump, Doug's scar, Stacia's failure- all about 6-12 years ago)....

Is 6-12 years THAT long, considering FDA regulations and how long it takes to get past them? Not counting getting funding, research, developing the software, developing the processor..... In my opinion, it isn't TOO long, which scares me.

Have implants come that far since I was born 19 years ago? Did they seem advanced back then, or merely a dangerous thing that doctors and parents HOPED for- and it happened to work? I have so many questions now, and even less answers. Was it a guarantee back then with as good prospects as it is now??

I don't know. But what I DO know is: I'm scared. And I really don't like it. I know I will assault my surgeon with more questions than I ever had before (lumps, scars, success, classes, anyone?) But ultimately? Still going with it. I'm just even more scared now, which doesn't help. I am, interestingly enough, even more motivated. All these people saying it won't work has made me even more determined to see that this surgery will not be in vain. It may be "too late" for me but I will NEVER know until I try.

Sleep Well? Hardly, but amusing anyway

2008-06-04T03:10:00.000-07:00

So, I have a long history of having nightmares or downright bizarre (but usually amusing) dreams. It's like my subconscious really likes to regurgitate little thoughts and fragments from my day and spin out a really crazy vivid dream.

I thought I'd share all of the dreams I've had about cochlear implants so far. There's only been two, but when I think about it, I think that some of the regular dreams/nightmares (after the 2nd dream about implants) have had me with a cochlear implant. (Like it's a normal thing!) So I think my mind has somewhat adjusted to that aspect of "identity change" or whatever you would call it. It's really cool, because in the dreams I remember vaguely thinking, "Huh, I have an implant in...." and then just accepting it.

So, the first dream I had was very simple. It was Activation Day! So the audiologist told me to put the processor on, and I did. But it was odd because it hurt a little. The magnet was pressed against my head SO hard that it was ridiculous! The audiologist explained that it was normal and that I wouldn't notice after awhile. The processor was numbing my head a little! I asked, "Should it really be this magnetically tight though?" Then, I just said, "I don't care though. I'm glad because I'll hear! That's what matters!" So Tina turned on the computer and I heard long beeps and the implant pressed against my head even tighter and I woke up!

The second one was about two weeks or so after this one, and it was about two days or so after I had seen this really funny zombie movie called Fido. In it, zombies come to life but are capable of being controlled by wearing a special collar. There was a character in it who actually loved his zombie, but the rest treated their zombies as pets or slaves.

So, the dream was essentially like Fido, except instead of zombies it was robots/cyborgs. More robots though. And at one point, I informed my mom, "Some people LOVE their robots. You know, like actually love them..." and my mom went, "Eww! That's so wrong! That's weird."

I could understand someone becoming attached to anything.

But then somehow it turned into being a bit offended and going, "Well, Mom, I'm a CYBORG and you aren't complaining about people loving me."

Suddenly, all the people that had been around us gathered together and others joined a big MOB formed. They started getting crazy and shouting, "She's a cyborg! Collar her! Get her under control!"

My boyfriend showed up and said this line we both think is really funny (from an anime called Fooly Cooly). "Mixing robots and cyborgs up is a common mistake."

He then calmed the crowd down and insisted it'd make a good movie, so he and I grabbed video cameras and started filming people who, in turn, started "acting." Peace and understanding prevailed. :P

Note: I posted a blog for May 29th that I hadn't gotten around to posting yet! But a question in it was: other than recording what sounds used to sound like to you and keeping a blog, what else did you do or wished you had done, BEFORE you got the implant??

And if you don't wish you had recorded what sounds used to sound like to you, is it because you easily remember what they used to sound like? And are you now forgetting and having them replaced with what you hear with the CI now?

Also, I will comment you all back! Sorry for my lateness :) I really appreciate all your input/thoughts/experiences

Edit::: July 2nd, the first full day with the implant, I had a dream while taking a nap on my couch. I dreamed essentially, that my head hurt REALLY bad due to a bag of radioactive magnets (?!) that an "evil scientist" had brought into the room. I hung it up so I would know where it was and so I could keep away from it, and then I kept thinking, "The other side of my head hurts too! The magnet in my head is REALLY reacting badly, isn't it?" I woke up and realized my right side (non-implant side) was on the couch's sharp corner and that the fan was whirring which hurt the left side thus contributing to the all-over headache and head pain! No radioactive magnets here, folks.

Misconceptions, misunderstandings, and implants, oh my!

2008-06-04T02:13:00.000-07:00

Warning: This post is really vague at best and doesn't really cover anything in specific.

I feel a bit lonely, as though I was delegated to some other world. I feel like everything lately has been a bit too repetitive. I hate mentioning the implant to people anymore, because I feel like I'm talking about it too much.

But how do I NOT? And those people SHOULD understand right? I don't know. I feel like maybe I should just keep my mouth shut and my thoughts to just this journal. I feel like I'm just scrubbing in the same corner over and over with a worn-out toothbrush.

That is to say, I feel like I'm wearing others out and possibly myself as a result. Not just with the CI but as a person, which sounds really odd to say.

I'm still excited about the implant and it still seems like SO long away to wait, and I am counting down the days.... and trying not to, because it only makes me realize I have over a week left! (But no longer 2 weeks!! :D)

Forgive me if this sounds excessively negative.

I'm trying not to get discouraged. It seems that me being deaf and getting an implant is a lot different than someone losing their hearing and getting it. Nobody, for one, would argue against THAT, now would they? I find it odd.

I was talking to a friend, Beth, from elementary school that I haven't talked to for awhile. She's hard of hearing but speaks well and can understand speech. She's been in contact with one of my best friends, who I've mentioned is deaf as well. I told Beth during a lull in conversation that I was getting a CI. I thought she would react as, "WHAT? Seriously?!" but all she said was "Really? That's awesome." Just as calm as calm could be. I thought she would have some kind of opinion on it.

I was surprised and told her so. She said, "Well I can hear so I understand why." She then asked me what I would gain from it that I wouldn't gain from a hearing aid.

I can't answer that completely right now, since you don't always know what you WILL gain from it. It can all really be a bit relative.

I told her that the doctors at least have said that I will be able to hear the sound "shh" which is a BIG improvement because I can't hear that sound, ever, right now, with a hearing aid.

She congratulated me and asked the perennial question I've been getting a lot: "Are you nervous?" I said, "Of course."

I'm just a bit sad because aside from my boyfriend, (who I feel like I am probably boring as well, at this point too) and my always-enthusiastic grandma, Beth is the only one in my life who has accepted it so easily.

There's people at school that I've told, who have been excited and thought it was great, but they aren't close to me and I think they think it'll fix "everything." Either way, those who aren't "in" it, are all for it.

My best friend seems weirded out by it. She loves me and supports me no matter what I do, but I can sense she doesn't understand it. She doesn't understand my deep affinity and should I say, need for hearing. She doesn't know what it is like to wake up to your alarm crowing crazily like a demented rooster, to hear someone you love's warm tone towards you, someone tapping their pen in an otherwise quiet lecture hall, or any of the many sounds I hear everyday. She probably HAS considered an implant, but I suspect she's discarded the concept as useless and inapplicable to her.

My mom.... she has said she supports me in whatever I do, and I genuinely believe her words in that regard. But my mom is more worried that I'll be let down that I don't think she's really been able to look it all in the face and balance it out equally. It's odd because she's usually an optimistic person but she's really treading carefully on this.

My dad.... this is the weirdest case. Anytime I mention it, he seems to get selective hearing. He tunes me out completely. The other day, we were walking down the street in an epic hunt for delicious Indian food, and I mentioned excitedly I was getting an ipod touch. He asked where from, and I told him ebay. Then he asked, "What do you need an ipod for?"

This was right after I had told him the Ipod was compatible with CIs!

Ouch. Some of the people in my life SERIOUSLY need to come to terms with the fact I am NOT just humoring myself and playing some ridiculous fraudulent game of "I can hear!"

I CAN hear.

I CAN hear with my hearing aid, and I CAN hear ipods even now. I just don't get the melody and if I don't use a hearing aid a lot of the musical quality gets lost. This will hopefully change for the better too, after the implant.

I just don't get it. And I'm really feeling a bit discouraged. I want to tune out the world, but at the same time, I really NEED people. It's been really odd.

It is laughable that someone who was born deaf has to encounter such opposition, whereas I imagine people who went deaf later in life receive little to no opposition. Am I wrong?

Maybe they're all just worried for me. Or maybe they're worried this will shatter their perceptions of me. Perhaps I'm overanalyzing this but maybe in my parents' case, this implant, if successful, will indirectly make them feel as though they made the wrong choice after all. I don't bemoan them this and would never ever suggest that, because who I am today is largely due to this.

The only way to find out about things like this is to talk to the people directly! So I might do that and see why they've been carrying such odd attitudes towards this.

In general, it's really important to be clear with everyone on the benefits it CAN offer but also to be realistic about it. What I don't like is feeling like I HAVE to justify myself lately. Why should anybody have to justify wanting to hear better?

Ipods and music!

2008-06-01T20:00:00.000-07:00

So, all my life, the only music player I've owned is a CD player that my friend Stephen gave to me after I asked to borrow it for the long bus trip up to summer camp when I was probably 14 or so. I greedily soaked up whatever sound I could get from the CD player amplified, and fell asleep listening to songs. He gave it to me after we had gotten home from summer camp and I realized I still had his CD player. He smiled and said I could keep it because he had another. I insisted he take it back but he insisted I take it. So I took it and I still have it to this day!

I haven't seen the need to spend money on any other music player, even though I don't use that CD player much. With the advent of laptops playing cds and then finally, Limewire or youtube.com, I didn't find it too necessary. I don't mind not having music playing 24.7, because for me the sound of everything else is enough.

But I have often wanted to buy an ipod just so I could have the convenience of "music on the go!" and was always waiting for some opportune time or reason to arise. And it has come!

What better way to celebrate better hearing than to be able to hear some great music?! Notably, I will not be using the ipod too much at first though, as I want to give environmental noises/voices more priority in my brain.

After a week-long search for good deals on ebay and craigslist, I eliminated many music players. I had originally wanted an IRiver Clix (from Europe and plays movies, games, and music!) but then I heard about the ipod touch. It has wifi so you can download music on the go or access the internet! I'm not a big game player, so the fact it had games wasn't a factor. But my wonderful boyfriend showed me the other day that his iphone (which is nearly identical to the itouch, except that it has phone capabilties) could stream closed-captioned lyrics IN TIME TO THE MUSIC! (Google tunewiki)

I can see how this would potentially help me and even if I can never understand speech, I've always wanted something like this! So, I was sold. My search for an Ipod touch began!

And it ended today!! I won an auction for an ipod touch. Considering that they sell for $300 or more at top retail price and $285 on discount sites, I got a great deal! It is under $200, so I'm glad. I really dislike spending more than $30 on ANYTHING though so a big part of me says, "I really must get a lot of use out of this or I'll sell it!" I am really excited though to try my new ipod!! It should be shipped by at least 2 weeks or less! Whee!

Also? It is FINALLY June!! It seemed as though it would never come. Only 10 more days until the pre-op and then 5 more days after that is the surgery!!

Recording Sounds

2008-05-29T23:00:00.000-07:00

I had this post thought up but hadn't posted it yet, sorry about the delay!

So, I was on the bus and I was thinking. Somehow my wandering thoughts arrived at a question: "What do I most want to do before the surgery? Will I miss how things heard?" And this made me think of more questions: "Will I wish I had somehow recorded what sounds sounded like to me?" I will still have my left ear to hear sounds with, but still!

I started getting sentimental and felt really silly. But, it was like, "I am losing this ear forever!! Only an implant will make it work. And, the sounds I will hear could be vastly different."

I arrived at my boyfriend's house after getting off the bus. Taking advantage of the fact my boyfriend was talking to a friend that was there too, I whipped out a notebook from my backpack. Chewing on a pen, I pondered how to start.

How DO you describe sound???

Here's some notes from my notebook. These are my laughable attempts at capturing what things sound like, in words, so that I could "remember." I came to the conclusion this was IMPOSSIBLE to do, almost! I will just have to deal with the fact I might have to refer to my left ear to remember how some sounds used to hear and also to my limited auditory memory. And if I get an implant in that left ear, then the "old way of how things sounded" will be forever lost.

Another question this experiment made arise: Are there any things I would want to do before I get the implant??? I think this is the only thing I've really tried to do: record sounds as I hear it NOW and also this blog. I tried to set up a chart with 1 being LOW and 10 being HIGH, to better distinguish what sounds sound like.

Sighing: Just sounds like air

Plastic popcorn wrapper: Crinkle, even though I can't actually say it sounds like a "crinkle." I just know it does. It crinkles at every movement but is not insanely noticeable. It just is. Come to think of it, it may not be as loud as it ought to be???

Pen dropping on notepad: Satisfying sound. It sounds solid and reliable. It is enigmatic in that it's kind of a 6.

Microwave: Kind of annoying because it's like white noise but it isn't TERRIBLE white noise since I think I could grow to not mind it and even like it were it to be projected 24/7 whereas traffic is just NASTY. It's deep, about a 4 or 3.

Popcorn popping: The microwave is the predominant sound, not the kernels. The popping sounds pretty quiet, just like occasional higher bursts of sound.

Popcorn bag: Funny! It's got an odd sound. Maybe a 4.

Moving/shaking paper: It's not that loud. It's just a high pitch sound that changes in loudness with movement.

The Dilemma!.... Solved!

2008-05-29T07:22:00.000-07:00

The more I read on the differences between the Nucleus Freedom and the Harmony, the more I truly realized that even though the professionals say, "It doesn't really matter which one you pick," that it does to me. It really really does, because not only am I trusting my ear to a company, but I am also trusting in the fact they'll continue to develop new technologies that will be fully compatible with my implant now, instead of introducing new implants that will leave me in the dust.

So, I frantically fired away a series of emails to the patient care coordinator, telling her I really wasn't sure and needed to see the processors again and discuss it with the audiologist. I promised it would only take 10 minutes if that was all they could spare. Jenny set me up for 3:30, cheerfully. I was thrilled- a same day appointment so that this didn't have to weigh on my mind and confuse me any further.

I had stated that one of my main desires is to be able to listen to music, and not have to deal with a bunch of wires and cables. I found out this morning (which led to some of my confusion over which company to choose) that the Nucleus Freedom allows you to open up the back of the processor (the thing that you wear on your ear) and simply plug in your iPod or music player. No swapping earhooks or whatever. But I wouldn't let that be the only factor, in my decision.

HOWEVER, the audiologist (Tina) explained how it would work with BOTH companies and some of the comments left on this post were REALLY helpful, because I had some idea of how things could work. I wrote down on the bright yellow pad, "I heard that you could hook an ipod up to the Harmony but still keep noise of the environment around or turn it on and off, so that I don't have to swap earhooks. Is this true??" Tina looked thoughtful for a moment and then said, "Absolutely. Yes. You actually just can direct connect the cord to the ipod" and showed me. It wasn't as complicated as it had sounded upon reading it.

So, given the fact I really dislike the Freedom's cord/headpiece, I happily kept in mind the many great recommendations and tips left on this topic by people eager to help and people that had very helpful and valid points. Thank you all!!!

I also rethought the fact about the MRI. I won't be getting many MRIs hopefully, but Tina and her intern VERY helpfully informed me that getting the magnet removed isn't a big surgery. They just cut through muscle and take it out, simple!

I feel so much better about this and have been able to completely answer all my questions as well as revise the post that was here earlier. I had been confused about which was "better." So all in all, the dilemma is... SOLVED!

I am getting an Advanced Bionics cochlear implant, the Harmony make and with a sienna-colored BTE (earpiece). It also turns out that they have a TON of caps and colors and they said for me to just remind them and they'll give me those!! So I'll be fashionable, haha. I think I'll be rocking the metallic blue cap most of the time though, as I just love the color blue.

Thanks again to everyone who helped! Also, I'm really getting excited. I picked up a copy of the book Rebuilt by Michael Clorost, and so far am almost done with the book. It is both intriguing and sad, but immensely helpful in realizing some of what to expect.

Cyborgs

2008-05-28T19:54:00.000-07:00

From Wikipedia:

Some theorists cite such modifications as contact lenses, hearing aids, or intraocular lenses as examples of fitting humans with technology to enhance their biological capabilities; however, these modifications are no more cybernetic than would be a pen, a wooden leg, or the spears used by chimps to hunt vertebrates.^[5] Cochlear implants that combine mechanical modification with any kind of feedback response are more accurately cyborg enhancements.

My take on it: I mentally went, "Yay!" and smiled when I read that those with an implant are "more accurately cyborgs." I've always liked having something unique, and this is definitely unique.

What's interesting to me is that even though implants have been around for awhile, the notion of cyborgs still seems so "new" when applied to humans in today's modern world, even though many instances of "bionic" people have been found in Star Trek, comics (Iron Man), movies (Terminator, anyone?) and books dating as old as 1843 (Edgar Allan Poe, among some others).

Perhaps it is that nuance of meshing man and "machine" that seems so foreign. In this age where practically every white collar person seems to have a bluetooth, where a great majority of homes have their own wifi networks, and kids as young as 7 have their own cell phones, it is still a shock to the mind to think of combining two such different organisms.

My ear right now, despite its apparent deadness is nevertheless still pulsing with warm wet tissue and energy, expediting trillions of cells a day. My body, with its own intricate system and its rapid-fire neurons, could be seen to be a form of computer.

My body doesn't speak in zeros and ones, however.

The implant does. It is hard, strong, and designed to go for my whole life without having to rebuild itself constantly as my body does every minute. IT speaks in zeros and ones. It screams in high-speed binary, highly more supreme than my body has shown itself to be.

My ears- The ears that probably have not heard below 30db ever, the ears that I used to imagine were struggling to "wake up" its nerves in some contrived yet noble attempt to restart, those ears will not be the same again. And who is to thank? Many scientists, researchers, and coders.

Not only does it take doctors to fix me, but it takes programmers to dream up and stimulate the fragility of sound.

One line of code messed up, and I will hear only the high frequency hisses of the orange electric lights overhead.

I did computer programming for a short time, and in that short amount of time, I learned how much there was to getting a program to do something as simple as produce one line of input: "Hello."

How many lines of code does it take to transform my ears?

I don't know, but I do know it takes only one line of code to make me bionic.

The military has long envisioned a possibility of meshing machine with man, to make better, faster, more dangerous soldiers. But it is the regular civilians that are making these strides more often.

It is the infant that recognizes its mother's voice for the first time. It is the old grandfather that gets an implant and can finally hear more clearer than he has in years. It is the 20-somethings that saw the whole wide world open to them, only to be dismayed at the fact their own world was closing up to them slowly due to their hearing loss. It is the people that realized their ears just weren't cutting it for them. It is me finally deciding to see what an implant could do for me, at barely 19.

We are desperately envisioning a new standard for ourselves, even if they are "ordinary" standards. We long to hear music, wind, laughter, birds, words and in the process we become more than just organic matter. In a sense: more than "human." We adjust our programs to fit with our environment. They are real programs that can be wiped out to have newer, more innovative ones placed in them. We are constantly facing being "out of date."

When I get this implant, I face the fact I WILL become part-machine. My ears could be outdated, just like my laptop will probably be obsolete in a few years. But what's more likely is even if I become "outdated," my bionic ear will continue to work.

I know many people who still use Windows 2000, and it is "outdated" by now but they have found ways to update it and for them, it works. It gets what needs to be done, done. My friends and relatives' hearing may deteriorate with age or far too many rock concerts (for some of them!) but the chances are mine never will.

This is the greatest irony- that a profoundly deaf child may hear better than them one day.

This is a marvelous age- not the silver or gold age, but the titanium age. We digitally record shows, download music in minutes, and share movies from halfway around the world. When I was one, a cochlear implant would have looked strange. Today, it might get mistaken for a bluetooth or simply another electronic device.

I can buy an iPod and connect the music directly to myself.

The sound waves will go directly through my head in zeros and ones and I can't help but imagine colorful gold and blue currents happily reaching out at rapid-fire speeds to reach my brain, where my brain translates it all. (And not in zeros or ones, but in electrical currents.)

In actuality, there is no color. There is just pure information traveling at millions of bits a second.

I am electrical, and so are you. Our body sends currents, fires off neurons, travels up the brain stem, snakes up the spine, and all in all works as a marvelously programmed up-to-date machine.

The only difference is a part of my body will speak in zeros and ones. I will become a cyborg, unable to withstand heavy magnetic fields, but able to hear far much more than I have ever imagined. Yes, magnets will stick to my head. Yes, I can hear you but maybe I still won't understand what you're saying ever, still. Is it still worth it? I hope so.

I have always been a lover of sci-fi and an appreciator of robots. Now I get the chance to become part-machine.

Oooo!

2008-05-28T19:03:00.000-07:00

I was browsing the forums at www.hearingjourney.com/forums, which is the Advanced Bionics (a company that manufactures implants). Someone had mentioned this AWESOME site that has features I've been looking for FOREVER! Basically, you can listen to pairs of similar words as many times as you want to and then test yourself to see if you can distinguish the difference.

I listened to "very" and "ferry" and tested it out ten times. I got it correct ten times! It's really thrilling that I can do this with a hearing aid. I don't seem to have very good auditory memory, since I have to really rely on lipreading and don't really recognize my name, ever, when I hear it. I scored a 70% on speech comprehension WHEN GIVEN A CHOICE BETWEEN WORDS. But I find that when I'm encountered with the millions of possible words people use, not just two or even three, I can't seem to do it. But this at least gives me hope. It's a site that I can practice over and over with, because honestly, who would want to repeat the same few words for me over and over? :P I know people want to help but not everyone has time or the patience to do this, so this site is really a blessing. I added it to the "awesome sites" column. It's http://www.manythings.org/pp/

I really am finding the forums a great help. It's truly nice to connect with people who can help out or give tips, even if my case is pretty untypical.

Oddly, I have a headache right now and all sounds were annoying me earlier, so I'm not sure if I'm just in a weird mood. So, currently I'm in my room, with the door shut, with some delicious cranberry juice. I might just take some aspirin and a nap and see if things look up later.

On another note, I'm afraid I'm boring my boyfriend (and emphasizing my difference, in the process!) by talking so frequently about the new sites I've found or the fact I can tell the difference between "wait" and "wet," when this is SUCH a "normal" thing to be able to do.... but as Neil Armstrong said, "This is one small step for a man, one giant leap for mankind."

However, for me it's the OPPOSITE! It's one small step for mankind, since comprehending words really isn't that significant to people (until they lose their ability to do it, of course), but it's one BIG step for me. I look forward to more "big steps."

I really can't wait now, whereas in these previous months I had been largely ignoring it, fearing its possible impacts on me.

To use an analogy: I really can't keep myself in a dark room and pretend no light bulb exists. I KNEW all along the light bulb was looming right above me, patiently waiting to shine; I was just too afraid to flip the switch.

It seems that so much could go wrong- the light bulb DOESN'T turn on or it does emanate a light, only to be ridiculously dim, and you're made even more aware of what you're missing, instead of just dealing with that completely dark room that you dislike greatly but at least are used to. I'm still more nervous than excited.

"You're getting an implant?"

2008-05-28T10:00:00.000-07:00

Invariably, I'm really finding myself totally preoccupied with thinking about how surgery is SO soon and how activation is such a long way away, but yet still SO soon. I mean, I am probably more fortunate than most since the process went SO fast. I think a great deal of it has to do with the fact that the whole mindset seemed to be, "You'll of course profit from it, given that you were recommended a cochlear implant when you were a baby and you're still profoundly deaf." I think the last part wasn't a big surprise to any of us, hehe.

So there wasn't really any debate on its profitability to me, no waiting list, and the insurance got accepted happily quick, all of which I am still amazed by and still thanking my lucky stars for. They just asked for my audiograms and then got me scheduled for the appointments (which were usually spaced far apart due to the limited office hours, much to my chagrin). That was pretty much it.

(For those of you who wondered when reading this, my parents didn't get me an implant when I was diagnosed deaf because they wished to give me the choice to choose and also wanted to wait and see if technology got better. They're both hearing although both are fluent in sign.)

I think the whole formal process kind of began either February or March. March definitely, for sure. I think February was just when I started REALLY pondering and researching it. I think I got some emails fired away to various centers for cochlear implants around here.

If only I had this blog back then! =) But I never really imagined the hills and valleys I would cross, back when I was pondering it. Even when I had decided to get it, I didn't really think I would become this introspective about the whole thing. It isn't too surprising, though, when you think about it. I really think that even if one tries to treat it all lightly, one is going to find out it isn't possible to simply let it and all of its implications go.

I remember walking back from my class (it was supposed to be a speech class but I fortuitously filled out the wrong form and got assigned for a HEARING class, in which they train me to listen to words. It never got past all the testing of my speech comprehension they did, since it's on a quarter-by-quarter basis because we're an research university)

--- So I was walking back towards my dorm, and I remember it being a sunny day, and my mood being more that of a very rainy day. The entirety of my desire scared me. This put me in somewhat a bad mood. I was hearing my shoes hit the sidewalk, but REALLY thinking about how perhaps the sound I was getting wasn't enough.

Wasn't enough, wasn't enough, wasn't enough, my mind chimed repeatedly in time with my footsteps until I couldn't take it and grumpily thought, "SHUT UP. Let it go. Stop thinking about it!"

But only a few seconds later: "Huh? They actually suggested I get a cochlear implant point-blank? And the fact they were so positive about its potential to really help me out? Okay, that surprises me. Have I ever been told in such positive terms how it really COULD help me? No, stop. Don't get your hopes up. Wait.... am I actually CONSIDERING this with total openness?"

Apparently, I was.

I didn't decide automatically or overnight. Although with the fact I've been deaf for 19 years, using a hearing aid sporadically my whole life, but going years without wearing one, until just recently, it definitely seemed out of left field to some of the people that know me. Or those who THOUGHT they knew me. Shock definitely was a reaction some people had when they were told I was getting one.

I think I've always subconsciously known I would get an implant or something of the sort, though.

Growing up fully deaf, I should have been in the deaf community. But I was always standing just outside the circle. I could step in it, but I never wanted to. It's not that I dislike sign. In fact, I sign fluently in SEE* but usually sign in PSE.*

I'm deaf, but I'm not Deaf. Deaf with a capital D suggests the entirety of the CULTURE- and perhaps the ACCEPTANCE of your deafness to such an extent that you can actually be in a culture that celebrates it as normal. There has been a controversy over whether or not deaf people should get implanted- if this "destroys" their culture.

I am never going to write about this topic unless specifically requested to, for it does not apply to me. I WILL happily discuss it, and I DO have opinions on it, however. It's not a sensitive topic at all so no worries.

For me, the fact I am "deaf"--- deaf so long and so dependent on sign language that it seems to most people that it ought to be so much a part of me that I belong to the culture--- never came into play.

I never had to wrestle with the issues of whether I was turning my back on "my deaf culture." I don't have a deaf identity, period.

Walking home that day, all that was on my mind was basically, "Do those implants still look as weird as I know them to? Because if not, I'm getting one."

Then the other side of me- the sensible side, not the vain one (wink, hehe)- loudly protested. "WAIT! You need to do research! You need to find out how much benefit it can offer! C'mon!"

So I researched. I sat up nights, googling different keywords.

Cochlear implant. Cochlear implant process. Cochlear implant deaf. Cochlear implant research. Cochlear implant companies. Cochlear implant cost. Cochlear implant insurance coverage. Cochlear implant benefits.... and so on.

But I am very certain that the research I did was probably not as extensive as some. It WAS a lot of research though. Just when I got one question answered, I thought of another and another!

I do know that the decision to get one was very simple (relatively speaking) for some people. For them it was, "I'm going deaf (or became deaf out of nowhere) and this surgery will help and is the only alternative for hearing again other than hearing aids. I'm getting it, period!"

Others may have agonized over it or waited awhile so they could figure out where they stood.

But once I had "done my research" and REALLY thought about it (but I did my thinking fast because I didn't want to lose any more time) it was kind of finally a time where everything converged.

In grade school, I couldn't have really voiced I wanted an implant. Is 7 too young to convince your parents you want one, since they decided I should be the one to choose? However, if I had REALLY wanted one in grade school, then I think my parents would have considered it with me.

But I never asked for one.

I think it was mainly the fact I was in exclusively-deaf classes in grade school and I never really had to think much about how the lack of communication would affect me. There were always times when sign was definitely woefully inadequate for me, especially as my vocabulary increased, and times I encountered people who didn't know sign at all. Also, in elementary school the students that had cochlear implants had bulky processors and very strange-looking cords/headpieces. So I never wanted that.

In junior high and high school, I simply didn't think of it as an option. I was doing well in high school with my friends and peers. It did get discouraging at times, but more and more people were learning sign or thought it was really great/fun to learn. I also had my trusty phone by that time, so paper/pen was almost rendered obsolete. I'd reach into my back pocket and take out my phone. (Provoking exclamations from the people standing nearby of "Cool phone! That's a Sidekick right?") I'd start typing whatever I wanted to say on it before offering it up for the eyes of the person it was intended for.

It would take them half a minute to process it in their mind, then they accepted it. Conversation would continue. It was slower than how it would have been, but it was conversation regardless.

But somehow, something snapped this year. I found myself more and more aware of how everything wasn't as "blue sky, flowers, and butterflies" as I had hoped. Ever since I got my hearing aid this year, my hearing aid has basically been inseparable from my ear. I have even gotten scratches and mini-rashes in my ear from wearing it so long, but haven't minded. It's a small price to pay for being able to hear cars, guitars, people talking, and even the toilet flushing!

Speaking of which, sometimes I pad to the bathroom at 2am, bleary-eyed, without my hearing aid. I flush the toilet. No sound comes. My brain doesn't trigger any mental alarm, but I do have a slight expectancy for sound to occur by now. So I feel a subtle unease at the silence.

It still seems to strange to me that sound is HAPPENING and I'm not hearing it. Sound waves are rising up and becoming lost in the nothingness. It's like that odd question, "Does a tree falling in the forest make a sound if nobody is around to hear it?" Does it? Of course it does- there's just nobody's ears around to swallow it up, to HEAR it, which is what gives sound MEANING and substance.

I don't want to miss any more of that sound. One of my mom's concerns was that I'd underestimate how much I could "take" the utter completeness of sound. She has heard of people who got implants and hated them because of how "LOUD" everything was. A lot of those people subsequently stopped using their implants. But to me, the thought seemed humorous, even foolish.

"Loud?" Yes, maybe it WILL drive me crazy at first but I am not going to give up after getting my skull drilled into, having a $70,000 operation after doing my research, and knowing just how much I WANT this.

Since I've been away at college, I don't think she's really gotten to see the total impact my hearing aid has on me. I really hope to show people that I AM committed to this. But ultimately, the only person I have to answer to is myself.

My failures are mine alone, and I am fully aware that while there are many amazing resources out there, that the vastness of the work that lies ahead of me is mine. It is ultimately down to my determination, my brain, my ear, and the computer that will lay nestled in my ear.

I think this is one of the MOST important things to keep in mind. We all know that it won't automatically work and that without continued lifetime work, it will not reach its fullest potential. But how exciting to know that we with cochlear implants have such a role in our own hearing.

Hopefully my brain doesn't reach some kind of threshold point in which it simply cannot "learn" anymore. This is my second BIGGEST fear, next to that it simply won't work better than a hearing aid!

We'll see. :)

*(Signing Exact English)
*(Pidgin sign, which is where you're still signing in English syntax but the rules are a bit looser and it all depends on who you're talking to. You can leave out some "little" words like "for" or "if" or "to" if you want to and still be understood.)

What?! Only ONE APPOINTMENT LEFT?

2008-05-27T00:00:00.000-07:00

Regretfully, I accidentally didn't save an in-detail explanation of what happened at the "big" cochlear implant appointment. I will write it again, when I find out the date it occurred. This one was the first appointment my mom had gone to with me.

Also? I have ONLY ONE APPOINTMENT left before the actual surgery. I think it's really hitting me now! I'm pretty excited but also REALLY NERVOUS about the outcome. Right now I'm more nervous than excited. I just really do not want to be let down. I am seriously realizing how big this is now. I am getting a hole drilled IN MY HEAD. I will have this thing in my head my WHOLE LIFE, unless I get it removed.

The thing I fear the most (and still dread the most), aside from it being a total letdown, is the fact my beloved right ear, the one that has carried me through a lot of new sounds and music.... it will be destroyed and unable to hear using a hearing aid again. Even if better technology emerges, the chances are low that it'll be able to be used in my right ear. Please God, let this work. I know I've been going using only one ear with a hearing aid but this is NOT my ideal. It isn't enough.

I had wanted to get a new hearing aid mold made for my LEFT ear made before I decided if I wanted to go ahead with letting them operate on my right ear. That way, I would be able to see if I COULD live with using my left ear the rest of my life, with a hearing aid, if anything went wrong. But I'm not sure of the timeframe for how long it'd take a mold to be made.... yikes. I had an appointment made but missed it by 30 minutes due to getting on the wrong side of the street to catch the bus! I'll call the people that make the molds today and ask about how long shipping will take.

Haha, having articulated this finally, I am seriously afraid the surgeon will screw up or something. I had joked about marking my ear with "not this ear!" or "this ear!" But right now I'm pretty confident with the doctor's professionalism. He may come off as a bit cold at times, (I will have to write a post about this, by the way) but he HAS performed a LOT of surgeries. I forget the number but it's well over 100.

So, my next appointment is June 11th, which is the pre-op. I'm really disappointed that it's 2 weeks away. It seems soooo far! It'll be at 1pm till possibly 2pm. I'll meet the nurses then and meet with the surgeon for final rebriefings.They will tell me on the 11th what time to come on the 16th. All I know is I'm 3rd in that operating room.

Then my appointment to remove the stitches (pretty... I'll take pictures. Yech :P) is 6/24, which is 8 days after the surgery.

Pre-Surgery Vaccine

2008-05-22T05:00:00.000-07:00

I just got an email from Jenny, the patient care coordinator. It was about getting a pneumococcal vaccine. Here is the email.

"I wanted to let you know that the doctors reccomend [sic] the Pneumococcal vaccine for all patients having a cochlear implant surgery. If you want to have the vaccine I can have it ordered and ready for you on day of preop. Its [sic] a completely preventative measure. We have never had a patient develop problems but this vaccine is completely recommended."

So what are my thoughts at this point? Basically, "What?! ANOTHER thing I need to think about?" I've been fortunate in that I've been able to really avoid having to think about it, as I'm sure is ridiculously obvious in my previous posts.

I couldn't help but laugh. I mean, is this really something else? They randomly (or so it seems) realize they forgot to mention I may want to get a shot as a precaution. I said yes, because the insurance is paying for it all anyway, and I looked up the shot. She said it was entirely optional.

Medicine-Net provided me the information I wanted. The vaccine is a shot designed to prevent pneumonia infection (which some of you may have figured out like I did, due to the name).

I figure, why say no if I can say yes? It's not really a big deal. I dislike shots as much as the next person. I am also sometimes suspicious of doctors' intentions in "recommending" extra procedures, especially if I may not need them.

But in this case, I think everyone that cares for me would want me to get this. "Better safe than sorry." And I concur.

So I guess before I get a hole drilled into my head, I get the proverbial cherry to top it off! Eh, shots aren't that big of a deal. What confuses me though is I thought I had already gotten this vaccine.

A month Away!

2008-05-17T00:00:00.000-07:00

So I just realized, while walking across the street, that it's May 17th. A month (almost) from today, I'll have already had the surgery. So basically it's the 30-day countdown. But again, I'm not really wanting to think about it. I think right now the total sum of my thoughts regarding this surgery consist mainly of "If it doesn't work how I want it to, then it'll just be something inside my head that I can at least still use to hear."

Hehe, how's that for minimizing it? I don't want to expect too much. I don't want to expect too little, though, and I refuse to let my progress be defined by supposed "pre-set limitations" that are in place because of the fact I was born deaf.

Right now I'm seeing this (probably incredible) denial mindset. All I can really think of is the fact I have work and then the University District street fair which should be nice! It's a really hot day. I started this day early due to waking up at around 6am and not knowing what time it was (my phone is really a huge joke; it won't turn on at all), so I assumed I was late. I got ready in record time and went to work, 45 minutes early! So I went back home to retrieve my precious hearing aid, which I had forgotten in my mad rush.

But I had left my keys at work in my backpack since I was returning very soon anyway.... so I had to knock around til someone let me in, and then call the Resident Assistant on duty to let me in my room! Keep in mind it was about 7am, so she was really tired, as was my friend Kayleigh who I had to wake up to call the R.A.

It was pretty funny upon reflection- another classic "Tasha" moment.

Iron Man Movie Part 2

2008-05-06T00:01:00.000-07:00

But I'll admit, I was still a bit plussed over kind of having to really look my "difference" in its face. Usually I can get away with not having to encounter anything that really makes me think too much about it. So, I guess the stress of having felt embarrassed in addition to the tension I've been feeling about the surgery kind of just all added up. Ian could tell something was wrong and he walked me to my dorm room and then asked what was wrong. It took me a moment to think of how to articulate it and then when I did; I just fell apart.

I do NOT cry about being deaf, but this time I did. To me, it's something that has been sort of positive, in a sense. I stand out more and people remember me easier, and as seeing I'm an outgoing person and love attention, it works for me. I also think that it can serve as a lesson to others- or so others have told me. I'm encouraging and even "inspiring." I really just view myself as ordinary, but if I inspire others or encourage them to keep going, then that's great! I believe each single one of us has something unique to ourselves (that we don't always recognize) that can help others.

I cried and ...I really didn't like it. I hate being so vulnerable or crying, ESPECIALLY if it's over a side of me that people rarely see. But Ian was great. He tucked me into bed and told me everything would be alright and that it all would look up in the morning, as well as other things.

I confessed to him, among other things, that I was afraid, because of the high uncertainty associated with this. There are no definite outcomes. You just do it, and basically hope for the best. But the conclusion I keep reaching is this: Despite everything, I really can't know so all I can do is DO it and then work my hardest during the training sessions. The only other option is to NOT do this. And that isn't an option to me anymore.

Iron Man Movie Part 1

2008-05-06T00:00:00.000-07:00

So, Ian, Scott, and I saw Iron Man last night. We had to drive to downtown Seattle to the Cinerama, so I could see the movie too. (That theater rocks for being in Seattle and for having subtitles!!!) It is fortunately not far from my dorm. The way the subtitles work at the movie is they're backwards in a red script at the back of the theatre, in a little box. So, I have a black transparent reflector screen about 8 inches long. But to me, it felt painfully conspicious.

Sure, it wasn't a full theatre. Sure, nobody seemed to be staring. Sure, some people would think it was "cool."

But to me, it was another testament of my difference. It's the mere fact I can NEVER (and never is a painful word for someone who (hehe) never accepts "never") go to a theater without needing accommodations such as this. And it is very rare theatres have them, so I should be glad Seattle has one. I called another theater in Seattle and found out they only had subtitles for one movie, which WASN'T Iron Man. So I was thrilled when Cinerama said they had subtitles for Iron Man. I kept asking them to confirm that they really did have it for all the showings, not just one.

However, when it came time to buy my ticket, I asked for one, slid my debit card over, and then followed Ian and Scott. I finally poked Ian and mentioned I needed to get the "stupid screen." He was confused by my behavior, while I thought it was OBVIOUS I was embarrassed by having to ask for it, much less carry it, or adjust it in the theatre. He asked for it, and the ticket-seller gave me it, to which I proceeded to walk very fast to the theatre. It may sound silly but I just felt like a standing duck, and wanted to get into cover of darkness. It's making me laugh upon recall because it does sound silly, but it really sucked to me, at the time.

I was talking to Brian (my awesome uncle) on my phone in silent mode, during the previews, since I had been talking to him since before I entered the theatre. I started complaining a bit about how stupid I felt having the caption thing and he was saying HE would use it. I felt like he was trying to reassure me, even if it was partly true. After all, why use it if you can hear? I honestly cannot imagine how easy it would be to just sit down and HEAR and KNOW what people are saying.... that seems so amazing to me. What's even more out-there is that people take this for granted, since just about everyone can do this from an early age.

So, anyway, I didn't want to use the caption so I didn't use it for the first 10 minutes or so, and then I finally just sucked it up and used it. The movie was pretty good, although not AMAZING. The CG was incredible though and the main actor just STEALS the whole movie. He did insanely well. So overall it was a good experience. (See Part 2)

CAT Scan

2008-04-28T00:00:00.000-07:00

I had the CAT scan today. This will give the doctor a way to see if one ear is "better" than another in terms of anatomy, for operating on. The image generated from the CAT scan will also be his "roadmap!"

It was funny because they had given me a paper at my last appointment that said before the CAT scan I couldn't eat for 4 hours prior, and it also mentioned I might get a shot (of fluid that would make parts clearer.) So I went in, having taken all my earrings out already and expecting to get a shot. But the wait time was actually LONGER than the actual scan itself.

All I did was lie down on my back and then on my stomach and the machine scanned my head. It was VERY wide and not what I thought it would look like. I was in and out of the scanning room in what felt like 15 minutes!! It seemed like no preparation was really required.

Now to wait for the results of THIS one. But really, you don't wait for results. It's more that if anything IS wrong they'll tell you. If not, they just don't mention it.

Another goalpost down.

Cruise/Journalism

2008-04-24T08:00:00.000-07:00

I found out today via an email sent to me (and then later that day, an official acceptance letter!) that I was accepted into the journalism program, which is very competitive. I'm like, "Yipee!!"

Today was also the cruise for my oceanography class, which was a blast :)

It was a really nice way to start my day- psyched to go on a ship and then getting an acceptance email right before we all loaded into the van to go to the docks!

Sorry for the lack of details on this! We did a lot of scientific things, basically.

ABR Test

2008-04-11T07:21:00.000-07:00

I had the ABR test today at 1:30pm. ABR stands for Auditory Brainwave Response.

Basically what they do is they put a few electrodes on your head and you have to sit still for a hour or so with your eyes shut, while clicks occur. The electrodes pick up brain wave activity in the auditory parts of the brain, so that an estimate of how much hearing I have can be detected.

Simply put: It was really really boring! I had to keep my eyes shut the whole time and I didn't fall asleep until probably halfway through the test but I did keep waking up (without opening my eyes!)

However, this is another goalpost down since this is one of the requirements of the candidacy procedures. I've already had my audiogram faxed to them, so this was the next step- to retest hearing. I was a bit nervous that I would pass! I mean, I know I wouldn't but part of me was nervous that for some bizarre reason I wouldn't "fail" it well enough to qualify!!

I have to wait about a week or two for the results.... but I'm pretty sure I'll fail anyway. I hope. Hehe. It's funny to be hoping to fail a test!

Blackbird

2008-04-03T06:39:00.000-07:00

I've become a bit obsessed with this site: http://tonometric.com/adaptivepitch/

I'm determined to improve my hearing abilities/recognition. I REALLY want to be able to appreciate music and be able to distinguish songs if at all possible? I seem to have very low auditory memory for music. This doesn't stop me from enjoying it, true, but as a general rule I really can't distinguish melodies and as a result it doesn't even play in as a factor for when I hear music. This isn't "normal" and I really want to attain a deeper appreciation of music. So, I've become addicted to this site!

Ian and I hung out and played around with listening to music a bit. Before we started dating, he made me mix CDS of "great music" and we sat in my mom's living room with the lights dimmed, so I could just LISTEN.

Ian mentioned that I didn't seem to be able to keep the beat of any songs, which frustrated me because I felt that when I didn't use hearing aids I could find the beat by feeling but now that I use hearing aids the sensation of the music and the SOUND mix and confuse me. So I can't pick out the beat easily, oddly. The ONLY song I could find the beat to was a recording of "Blackbird" by The Beatles. This was only because it has a metronome steadily playing in the background, which Ian oddly said he never noticed before until I pointed out there was some kind of steady beat. I lose it though when he starts singing.

Upon closer reflection I found it REALLY ironic that the ONLY song I can confidently find the beat to has lyrics that seriously inspire me (they're the Beatles, man!) but also really reflect how I feel about my whole journey towards hearing music (and everything else) better. I feel like I've been waiting so long and that this could potentially really be a significant difference in my life.

Blackbird singing in the dead of night
Take these broken wings and learn to fly
All your life
You were only waiting for this moment to arise.

Blackbird singing in the dead of night
Take these sunken eyes and learn to see
All your life
You were only waiting for this moment to be free.

Blackbird fly blackbird fly
Into the light of the dark black night.

Blackbird fly blackbird fly
Into the light of the dark black night.

Blackbird singing in the dead of night
Take these broken wings and learn to fly
All your life
You were only waiting for this moment to arise
You were only waiting for this moment to arise
You were only waiting for this moment to arise.

Implant Date

2008-03-25T00:00:00.000-07:00

I was supposed to get it May 19th but between all the pre-op appointments required and the time frame I have, it is moved to June 16th! :( I know it will probably be for the best (less rushed for one) but aww! I really don't want to wait! Eh, it'll be good. I was really annoyed at first but now I'm glad because my mom can take time off now, and everything.

Okay, I Want It

2008-02-10T00:00:00.000-08:00

Alright, so I wish I had started writing all of this sooner. I remember thinking, "I really can't forget things all that quickly, can I?" Apparently I can!

So, basically, I've decided to get an implant. The wheels kind of all got turning when I went to University of Washington's Hearing Sciences in an attempt to get speech classes. I ended up in an auditory class instead. My first class was Feb 6th. So they really couldn't help me with learning speech, and mostly were testing me on how much speech comprehension I had and everything. So thankfully, I have that information on file now! It will be exciting to have something for reference (before-after.)

Intrigued, I started researching early February.

I knew that I did not want it to be manifestly obvious- and hoped that the implant would have become smaller since 1989 (when I was born.) It seemed, upon research, that it had. I asked for information and the UW sent me an packet with a VHS tape in it that was produced by Advanced Bionics, as well as booklets with pictures and information in it. I know better than to take everything by its word, since implant companies obviously have an agenda, being a business, even despite the type of business they are (allowing people to hear again.)

I watched the video, which featured mostly older people who were NOT born deaf, but whose hearing just got worse progressively. The video was a bit annoying to me, since I couldn't really relate to any of the people. But the things they mentioned- being able to hear music better, being able to separate sounds in noisy environments sometimes, etc, really interested me.

Growing up, when people asked me if I would ever consider an implant, I said "No!" because I thought they looked strange and the surgery seemed extreme. (However, I always have said if I have a deaf child I am without question implanting them!) It seems odd to me, now that I've decided to get it along with all the implications of what it might bring me, that I would ever have been so concerned about appearances. What's some "weirdness" if you can hear? But then again, a big factor of deciding to get the CI was appearance, in addition to the benefits it could offer me.

I think so far, people seem surprised and don't really think I'll go through with this. But I will. I mean, when I decide to do something, I may seem to "rush into it." In actuality, however, I've thought about this and researched a lot. I haven't really spoken to anyone, if just because I feel my case is highly unusual. I also don't want to become discouraged by hearing things like, "I hated my CI!!"

I wear an Oticon hearing aid in my right ear. The right ear is my "preferred" ear for whatever reason. However, there are not any significant differences in hearing ability in either ear. I use this hearing aid basically all the time. The only time I don't wear it is while sleeping (and I sometimes do!!) and while showering/swimming. But I haven't had it for too long- perhaps only 6 months!

This is another reason I didn't want to talk to people about their experiences, since it seems like a lot of deaf people who were born deaf and then got an implant post-lingually didn't really like the noise. I refuse to commit to something like this and then "give up" just because I hate the sound. Okay, I'm deaf but I really don't go around with a 100% complete lack of sound at all.

I LOVE sound. I couldn't live without it. Right now I can hear the cars on the freeway outside my window, and my fingers tapping the keys. I think people really underestimate what I CAN hear. However, let's make it clear here. I DON'T understand speech. I underwent some speech classes and "hearing" classes growing up but never stuck to it for whatever reason.

History

2008-02-09T00:00:00.000-08:00

Me:

I'm 19 years old, as of March 22nd :)

I was born profoundly deaf in both ears, diagnosed deaf at 5 months old. The doctors didn't think I was deaf, but my mother had a feeling something was wrong because I didn't respond to loud sounds or any sounds at all.

She fortunately works at a company that has deaf employees and a great majority of the clients use sign language or tactile sign language (sign for the blind), so she knew some sign already!

I participated in the Parent Infant Program (PIP) in Seattle when I was 6 months old and continuing up to the age of about three. This program provides a parent-support group, free sign language teachers once a week for parents, and resources for parents with deaf infants. I met my (also fully deaf) best friend there, who is one month older than me! We're still friends 18 years later.

I attended school starting at about three years old, in accordance with the early intervention programs' recommendation for deaf children. My parents wanted to give me the best advantage possible. I went to an elementary school in Seatac, riding everyday from Federal Way (about a 30 minute ride, but made longer because of the stops to pick up other children.)

With the great participation of my parents (they posted signs on everything- for example "table" on table, and fingerspelled some words that could be signed, made sure the televisions were captioned, etc), I learned to read at three years old. I loved reading and some of my earliest memories are of reading and of my mom fingerspelling to me. It all just seemed like a puzzle to solve.

I recall realizing I could lipread when my Grandpa Herb was talking to me and I couldn't understand him. He then spoke slowly and said something like, "You should learn to lipread" and I realized I could understand what he had said. I was around three or four years old when I consciously began learning lipreading. It really helped that both my parents mouth words along with their signing, so I began consciously paying attention to that.

I was in an exclusively-deaf classroom until 4th grade, when I mentioned I wasn't challenged and my mother talked to the school and got them to mainstream me into a 5th grade math class. The school saw success in that and started trying to mainstream deaf students more. A lot of the deaf students including myself were put into a mainstreamed science class in 5th grade, but for the majority of the time I was in a classroom where all the teachers signed.

Although the elementary school went up to 6th grade, I left in 5th grade and transferred to another school district that was reputed to have a better deaf program. So, I entered a new elementary school in the last year of elementary school. This kind of sucked because everyone already knew each other all their years of elementary school. I was also mainstreamed (meaning I had an interpreter in regular classes) full time which I loved, because I was finally challenged. I was also required to wear hearing aids full time at school. I don't really recall my opinions on this, except that I didn't like it when I got scolded for forgetting my hearing aids. I also didn't like seeming "different" but didn't mind the sound much. I sometimes turned it off in the cafeteria because it was extremely loud!

Then, my best friend transferred to the same district for junior high. We attended 7th-9th grade at the junior high. I then decided I was tired of having to go out of district for school and that I wanted to escape the stigmas and preconceptions of deaf people in a school district that already had protocols for how to handle deaf students. I wanted to be able to go to school, period. (I was fully mainstreamed in junior high, however.)

So, I transferred to a local high school only 3 miles from my home! The first few months were ridiculously unorganized. I went a few weeks without an interpreter for some or all of my classes. So, I relied on paper/pen, others' notes, and lipreading (which isn't reliable especially when the teacher is teaching new material that you can't anticipate or when the teacher turns around or moves around!) but I have to admit, I enjoyed the sheer unpredictability of it all.

My mom and I interviewed the potential interpreters ourselves, for the school district! We interviewed several people before we met Bianca who is an AMAZING interpreter!! She interpreted by herself for the whole school day (!!), for my sophomore year.

Then, for my junior and senior years of high school I did running start (a program in Washington state where you can get high school credits while also earning credits for an A.A degree.) So I retained my amazing interpreter for those two years.

The fall after graduating, I went to Highline C.C to finish getting my A.A but also because I wasn't certain what I wanted to do. I've always wanted to travel but didn't want to move out of Washington state quite yet! So on a last-minute decision, I applied to the University of Washington among some other colleges, and was accepted. I started attending in December 2007 for winter quarter.

I made the decision to research/get an implant about 2 months before my 19th birthday, and I'm not sure when I'll get it! I'm undergoing the whole candidacy process right now but essentially, they've already kind of said it's obvious I'm a candidate. It surprises me how easy it seems so far.