Activation Day!

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Cyborgically Yours!

Sleep Well? Hardly, but amusing anyway

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.

Ipods and music!

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!!

The Dilemma!.... Solved!

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.

"You're getting an implant?"

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.)