Tuesday, June 24, 2008

Stitches Out!!

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

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

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

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

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

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

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

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

I'll post a picture later :)

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

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

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

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

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

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

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

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

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


Sunday, June 22, 2008

Part 2 of Update (5 days postop)

(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


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."

Thursday, June 19, 2008

Drugged

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.

Wednesday, June 18, 2008

OPERATING ROOM

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!

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!"


Tuesday, June 17, 2008

AHH Let Me Out Of Here!!!

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

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


Friday, June 13, 2008

T-Countdown.....3 days?


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?!

Thursday, June 12, 2008

Ouch?

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.

Wednesday, June 11, 2008

Cheerfully Yours

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!!

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!

Monday, June 9, 2008

My Titles Fail

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

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.

Sunday, June 8, 2008

I am so scared now!

---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.

Wednesday, June 4, 2008

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.

Misconceptions, misunderstandings, and implants, oh my!

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?

Sunday, June 1, 2008

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!!