Failure

The title does *not* reference a CI failure of any sort.

Remember my freshman year?

Remember how hard I fought for accommodations? How much I struggled?

And then remember sophomore year? How I barely got any sleep? How I accepted the fact I'd just have to work harder than everyone else? How I figured if I just studied hard enough I could make up for what I missed in hearing?

And remember that one class I took for the past two years? I literally spent hours nightly slaving over the textbook reading, carefully taking notes- hoping that what had been discussed in a class of 50+ students would instead be absorbed by reading and rereading the material.

At the end of the two years, I took the national exam. It doesn't really serve much of a purpose besides the opportunity to receive college credit. Basically "testing out" of a college course. It's a culmination of all the work you've put into the class, giving you reassurance that yes, it was worth it.

I didn't think I'd done very well, but I hoped for the best. Scores came in the mail in rounds. I heard as more and more people received their letters and received outstanding scores. They never studied nearly as much as I did, so I thought maybe all my studying would pay off.

It didn't. I didn't just "not do as well I'd hoped"; my score was nauseatingly bad.

 Maybe some people would shrug it off and think "better luck next time."

But I'm not like that. Instead I reflect. I overthink.

I always thought that if I worked hard enough, I could achieve anything. But maybe that's not true at all. Am I completely out of my league? If I did this miserably bad on an exam with a class of 50-something kids, how in the world can I handle competitive college classes that can be 5, even 10 times bigger, let alone years of medical school?

Have I completely overestimated myself?

Don't get me wrong, working hard has gotten me far. On the surface, I'm doing pretty well. I hear and speak, by most standards, well. Working my butt off and barely getting any sleep has allowed me to stay in the top 5% of my class (for now).

Is it even worth it? Where is this going to get me? Are my standards just set too high? If I feel so burnt out now, where am I going to be five, ten, twenty years from now? Will there ever ever be a point where I can look back and comfortably say, "it paid off."?

It just bothers me because I feel like I'm capable of so much, yet every time I try to reach my potential, I can feel the painful hands of hearing loss trying to pull me back. Actually, I can't even completely blame it on my deafness, but, more accurately, society's refusal to adapt to it.

It seems like it would be so much easier to just be average. To be satisfied at the idea of simply passing a course that's on grade level.

But for now I carry on, chin held high, slowly placing one foot in front of the other. My life is so much more than a test score.

Unexpected Twist

The day came, and we were armed and ready.  Both of my parents went to the meeting, which is a pretty big deal since usually it's jut me and my mom. My dad went around asking each person their name and job description, and there was a strong feeling of tension in the room. My dad, a lawyer, was being quite successful at being intimidating. That is, until he asked what an IEP is... Then everyone in the room started revealing their true selves, as they no longer saw him as much of a threat.

My parents began talking about the unfairness of the evaluation and handing out my audiologist's letter. My dad requested an independent evaluation.

"No. That's not necessary," said the lady who was mostly in charge of the evaluation So, apparently they can say no.. Guess we weren't expecting that to happen..

She then went on to say that  in Special Education, in order to show a need for further services, you cannot be making any progress with the assistance/IEP currently in place. With the A's/high B's I currently have, that doesn't demonstrate that I'm failing to make progress.

"I have no doubt that you have to work much harder than everyone else, but that's just the way the law works."

My parents urged me to tell my story, from my point of view. (I'd already done it at every past meeting, but they wanted the people who performed the evaluation to get a better understanding of what I go through)

I told my story about how frustrated I was at the school. How I felt as if sometimes, I didn't even need to go to school because I missed so much of the discussion, it's worthless. That I didn't understand why they were fighting tooth and nail to prevent me from having something that could actually help me. I told them how tired I was. Tired of trying to keep up, tired of fighting- just tired. Sometime during those sentences, tears started streaming down my face. Ugh, I hate crying, especially in front of people I don't like. Yet, that's what happened at every single meeting ( I would then swear I'd never attend another one, only for the whole thing to start all over when there was another meeting.)

"Oh! I wish I'd known you were this frustrated when we'd done the evaluation. This changes everything." Everyone looked up at her...was she kidding?

"I had no idea this was taking such a toll on you and that you felt you needed it so much." Yeah. Because I just asked for CART because I thought it would be fun to fiddle around with...? (note sarcasm)

The lady then said that while I don't have an educational need, that she could put down that I have an emotional need and get me CART that way.

As, I'm sure you can imagine, that was the most bizarre 5 minutes of the meeting. Heck, that was the most bizarre 5 minutes of my life! Pretty sure this song started playing through my head..

(pause music at the bottom of the page)


Not so fast..

"But," she continued, "you'd still have to change schools."

Change schools? You see, they don't offer CART at my school, and aren't planning on it, no matter how much I beg/plead/cry. But, they do at another school that is about as far away as my current school from my house. This other school is a mainstream school, but it's smaller and has a fairly large deaf ed program. They send all the kids in need of CART or interpreting services there. Apparently it's cheaper/more efficient to have it all on one campus.

This meeting was halfway through the school year. I'd finally been adjusting to my new school. Now they wanted to toss me somewhere else? As much as I struggled at my current school, I have a great group of friends, and nice teachers. They just want me to walk away from all of that?

So, that leaves you where I am now. The decision making process. A little bit has happened since then (technology-wise), and I will post more on the pros and cons of each school.

But, for now, my wonderful reader, I leave you with that. I would really appreciate any more input you have, with regards to the current situation. What do you think...What would you do?

*I'm experimenting with my blog banner at the top. Still haven't been able to make anything I like, since I don't have any tools like Photoshop or InDesign at home. If anyone is generous, gifted in the design department,  and would like to design something (for free) then it would be completely awesome!*

Too Smart for Assistance

I had corresponded with Sara about my school situation a while back, and she reminded me that I left out a bit of the evaluation. Here's her comment.

"You should post the rest of this story. The insane part is that they don't think you "need" CART or anything because your grades are so good. They don't get that you can be SMART and still STRUGGLE.

I was in the same boat, but I sadly don't have any advice since we never got anywhere with getting me CART until I was taking graduate classes..."

Which was another aspect of it. I'm pretty sure they took one look at my grades, and scoffed at the idea of giving me services. A large part of the evaluation was weighted on my grades and test scores (apparently the words "commended" and "superior" don't exactly scream "Needs help!") My grades certainly aren't/weren't bad, although they'd be better if I actually learned a thing or two in class. I might actually get some sleep with CART, instead of having to learn what I miss on my own. Maybe I wouldn't be so frustrated, maybe I could actually relax, if I'm just given equal access to material.


Full disclosure- we got our class rank for our time in high school so far. I'm told that in most places GPA and class rank are not that big of a deal. Well here, it's kind of a huge deal. After each test, people actually sit there and calculate out their GPAs. The pressure to do well and rank better than others is enormous. I'd rather be measured against my own success and improvements than that of everyone else. Anyway, I wasn't planning on looking at mine. After half of my friends ended up being ranked in the top 10 (not the top 10 percent. The top 10 people. Out of 820. That's like...insane.) I went home and looked. I'm in the top 6%, which is nothing to sneeze at. Could be better, but it's not like kid swith hearing loss are held to much of a standard at my school anyway.

I'm going to start a new post about the meeting, since this one's getting long. Keep this in mind as you read the conversation that goes on between me and the others at the meeting..

School/CART Stuff- Part 2

Two days before the promised evaluation report was due, I noticed two women who were at the previous meetings about CART come into my class. I should probably note that we specifically told the evaluators that they should contact me or the teachers with the days they were thinking of coming, so as not to come on a test or video day, The teacher had told them they could sit in the back of the room. Right after the bell rang, my teacher said, "Oh, by the way, they're going to be taking a test for the entire class period. I hope that's okay."

One of the evaluator ladies got an angry look on her face, said, "No." and walked out. The other one followed.

Okay, then...

The next day, the two ladies reappeared in a different class. This class is one of my hardest, largest, most discussion-based classes. I expected them to come over and talk to me, or at least look at my notes sometime during the class. Why do that when you can simply sit in a chair for an hour?

The day they came, this is how the class went:
-We took a quiz over the previous night's reading
- There was a small amount of lecturing followed by a large amount of class discussion, which I struggled to follow and didn't participate in.
-We had to work on something individually
-We then had to discuss it with our table partner. It was really noisy, and the girl that sits next to me seemed to be much more interested in flirting with the guy in front of us, so I didn't get much out of that discussion..

The class ended, and the women left .As promised, the evaluation for CART was delivered to me the following day. I knew, from their one observsation, that the whole thing was going to be a joke. Here are some quotes from the evaluation.

"We did not see (LAM) enter the class discussion. She watched and did not appear to be confused."

"Socially, she appeared comfortable with her table partner. They did not appear to have difficulty communicating with each other"

"The cafeteria was very loud and she appeared to have no difficulty communicating. She was smiling and animated while conversing with her friends." No, I was not aware that they were watching me from across the cafeteria at lunch. The idea of it makes me strangely uncomfortable, in addition to the fact it's completely unrelated to the trouble I have in the classroom.

And, here comes the best part, which they said after stating their denial of CART,

"It is even possible that CART would be a hindrance to her during classroom discussions because of the lag time between the speaker talking and the captioner producing the printed word. She would be listening to one set of information while reading what was said previously. Taking into account the (ha!) quiet environment and her ability to use her cochlear implants to listen and speak, it was though that CART might be a disadvantage to her classroom access and performance."

Isn't it just absolutely amazing how much you can gather from watching me for an hour? Because, as we all know, it's not like people with hearing loss bluff or pretend to understand  or anything. We just do our best to appear utterly confused and dumbfounded whenever we misunderstand or can't hear something.
(Please note the sarcasm...)

It just kills me how every single observation they made is about how I "appeared" to comprehend or I "appeared" to understand. They're judging my acting, not hearing, skills.

This occurred before the winter break. My next post will be about the meeting we had following this evaluation...

In a Funk

When I need a mapping or have trouble hearing, my family is usually the first to notice. It's possible my friends notice too, but they just choose not to say anything :)
It starts out with...

• A significant increase in the number of times I say "what?"
• Suddenly needing things a lot louder OR
• Everything being painfully loud. Lots of shushing!

That's "stage one." Stage two is when I start to notice. Usually I notice the things I've already said, and

• I'm completely exhausted and worn out by the end of the day
• I get annoyed easily
• I snap at people at the drop of a hat (I'm normally quite friendly-honest!)

And that's how I've felt for the past few week-a month. It's not that my hearing has plateaued- I'd be fine with that. I feel like my hearing is declining, which is not okay. And it wouldn't be that big of a deal if I hadn't just had a mapping in which my level barely changed. Even my audiologist said she wouldn't expect much of an improvement, since there was pretty minimal change in my MAP for both ears.

So, what's the deal?

A) I have no clue
B) But it could be..

1. An equipment issue
2. A mapping issue
3. That I'm just stressed, so I don't have as much energy to put into listening
4. An internal implant/electrode problem (I highly doubt it)

I really don't care why, I just want it fixed. After a long (short, actually we didn't have school Friday) week of school, I want to be able to relax. Unwind with my friends. Do some serious retail therapy.

Instead I strain to follow conversations, and eventually give up and go into my own little world. I put on a a mask of sorts and going into autopilot- smiling, laughing when everyone else laughs, nodding along with conversations. It's like I've gone into a time machine and back two and a half years. Only difference is a new school and harder classes.

And it's just not fair to my family. I go home and take out my frustrations on them, the people I love most. I'm sure we've all done it at one time or another, but I come home tired, angry, and upset everyday. And they feel the emotions right along with me.

Two steps forward, and five steps back.

Sorry if you don't like the short sentences and bulleted lists. I thought I'd try out a little differently just for this post, it seemed to go with how I was feeling.

And no I'm not just going to keep complaining- I've got an appointment with my audiologist and the Cochlear rep on Friday. Cross your fingers...

Good, but...

In French class, whenever we do any sort of speaking test there is a rubric that we're graded on. You can be rated anywhere from a 0-5 on a variety of criteria. If you score a 3.5-4 on something, that means you scored in the "good, but..." category. As mature as my class would like to think we are, there is still a fit of giggles everytime the teacher says "If you have a good, but.."  (Notice what it sounds like when the comma is removed...) Anyway, it basically means you did pretty well, but there are some things that could have been better. That's how my week went.

For starters, there were no meltdowns, breakdowns, freakouts, or anything of that sort. It's been a relatively happy week.. Some of the material that I was worried about and having trouble with seems to have gotten easier. I really  need (another) mapping, so everything on the hearing front hasn't been too great, which doesn't really help when you're put in one of the noisiest hearing environments.  It seems like the people at the school are starting to understand what I'm getting frustrated with, and are willing to help- as long as it doesn't involve spending, and a very misleading thing called "educational need" is shown.
Unfortunately:

• A) Sometimes when you've done everything you possibly can, there's nothing left but to try a proven and well-known technology. If this isn't recognized very soon, there can and will be action on our part.
• B) My intelligence and ability to study for hours just to learn the material I can't hear in class shows absolutely nothing about my hearing ability. I wish someone (who makes these decisions) would understand that.

Sorry if that's vague, it's probably best that I wait to share more details until after the fact.

Believe it or not, my week was relatively stress free. I haven't been completely overwhelmed, and actually got something that I oh-so-dearly was starting to miss- SLEEP! My teachers have scheduled all of the hardest tests on this upcoming Thursday, so I'm planning on getting a head start on studying so I'm not a complete disaster come Wednesday night.

And for the but.. And it's a big but... ( no pun intended... okay, maybe...)

I've had the same violin teacher ever since I started playing violin over three years ago. I'm not talking about my orchestra director, but my private lessons teacher who I've seen for  half an hour each week to work on any pieces or techniques that I have trouble with, or want to get better at. He's been my teacher when my hearing was getting worse, when I decided to get a CI, was waiting to get my implant activated, watched as I changed and grew along with my hearing, and then my journey with my second implant. He loved to experiment with how well I could hear differences in pitches, and was usually able to tell if an issue I was having with orchestra  was a "hearing thing" or just one of my own little quirks, completely unrelated to how well I can hear.

For the past two Mondays, he hadn't shown up at my school to give me a lesson during my orchestra class (or for any of his other students). I figured he was sick, and didn't really think anything of it. What I didn't know was that he hadn't called the orchestra director to let him know he wouldn't be there, which was something always did. My orchestra director was starting to get worried, and on Tuesday went over to my lesson teacher's apartment and knocked on the door, but no one answered. He soon found out no one had heard from him in a while, and called the police. The police came over to the apartmet, and found that my lesson teacher had passed away in his home at least a week ago. He was fairly young, and relatively healthy.

That's all I know, I have no clue about the cause was or any other details. I'm still very much in shock, and it has definitely made me appreciate each day for what it is, because you just never know if tomorrow will come. I know it won't be easy to find another teacher who understands and is nearly as interested in my hearing journey. I am very grateful for the three years that I had him, and can definitely say I wouldn't be where I am today without him.

It's Not Easy

More to come, eventually.

It's That Time of Year Again- Main Subjects

See my post on Orchestra here. This is the letter I sent to all of my teachers in my core subjects, although I changed it slightly when I sent it to each teacher. I am taking two AP (the max offered) and the rest pre-AP classes, so this year should be fun. (ha!) I wanted to make sure I covered all my bases, so the email is somewhat lengthy. After sending this email, one of my teachers wrote me back telling me that there is a meeting about me scheduled for next week. I had requested to be present in this meeting, because I've found in the past they've never gotten the important points across (hence the email). So, as you can imagine, I'm not happy to find out from her that someone already scheduled a meeting about me. I mean, why am I the last one to know?! I haven't even heard from my Itinerant teacher of the deaf (not that she does much... or that I need her to, for that matter.) I did, however, pick up and test out my FM today. It works! (well, one one ear...)

Anyway, here's the email. Again, the ***ed out stuff is private and/or irrelevant.

Hi Ms. ***,

My name is L*** M*** and I am going to be in your ** period **** class. I wanted to let you know a few of things about me so that the year will run a bit more smoothly.

I wear a device called a Cochlear Implant in each ear. Rather than hearing naturally, I wear a microphone on the outside of my head that processes noise and then sends it to the implant in my head, which is then perceived as sound. With my cochlear implants, I can hear most sounds, they just aren't as clear and sound different to me than they do to you. Without my cochlear implants on, I am profoundly deaf.

I am completely oral and do not use (or know) any sign language. When you are speaking to me or the class, please try to talk in a somewhat loud and steady voice. I read lips, so I also need to have an unobstructed, lighted view of your face. I am constantly trying to fill in the blanks of what I didn't hear, so please try not to speak too fast! I also need to sit near wherever you usually stand while you are teaching, and it is also much easier for me to understand you and see your lips if you avoid pacing around the room. Please get my attention before you start speaking, because I may not notice at first that you are talking, and then miss the beginning of what you have said. If you are answering questions from students, please repeat the question back before answering it, because I often have trouble hearing students who are in various parts of the room. For example if John were to raise his hand and ask what page the homework is on, rather than just saying "Twenty four" say something along the lines of "The homework is on page twenty four." Otherwise I would have no idea what you meant when you said "twenty four" and it wouldn't do me much good!

I have the most trouble hearing through electronics, so if we are watching a video or listening to a tape, it must have captions. If not, I need a copy of notes with any important information that I need to know that was said. Legally, I cannot be tested on any sort of audio or video. Please also try to do your best to have a written copy of any instructions you give, whether it be on the board or on a piece of paper.

It is also especially hard for me to hear in noise, so if we ever have to break into smaller groups, it is much easier if I can work with my group outside in the hall, away from all the noise. If this is not possible, maybe we could work out an arrangement so I am in a part of the room that is quieter. I will do my best to remind you of this.

The last thing I wanted to let you know is that I use an FM system to help me hear a little bit better. I don't know if you have used this type of FM before, bu basically, you just have to hang a microphone around your neck, and your voice is wirelessly transmitted to my sound processors, so that it sounds a little bit louder to me. It's fairly easy to use, but I would be more than happy to come by **** [high school] today or Friday to show you how and explain it to you. It should only take a couple of minutes, but I would rather show you ahead of time, as it can get quite hectic on the first day of school (as I'm sure you already know!) Please let me know if there is a time you would like me to come.

Let me know if you have any questions at all, whether it be now or during the year. I am very comfortable talking about my hearing loss, and no one knows what I have trouble with better than I do!

Thank you!

No Two Ears Alike- Part 5: A Comparison

This is a series of "flashback" blog posts on my journey through going bilateral. To read the other posts in this series, click on the following links.

Part One

Part Two

Part Three

Part 4

So, I'm going to write a comparison between my left (new) ear, with info about my right (old) ear . Some of it is stuff I have already talked about, some is stuff that I vaguely mentioned, and some is information that I am just now sharing.

Recovery
Old: Easy as pie, but slightly dizzy for the first 2 or so days.

New: Terrible. Horrid. I was dizzy for at least a week, and in a lot of pain. Also had/have issues with the scar healing. It took me about two weeks to feel like myself again.

Residual Hearing*

*I have not officially gotten my hearing tested unaided since getting both implants, but will do so and post the results in the near future. This is just what I have observed:
Old: Seems to be a good bit of residual hearing in the low frequencies. In that ear I can sometimes hear my dog barking (if I am really close by), doors slamming, my iPod turned all the way up using my Bose headphones, and voices if you speak/scream loudly in a low-pitched voice. I can also hear loud clapping.
New: Appears to have some residual hearing in the high frequencies, weirdly enough! I don't think I am completely imagining it, but anything is possible. I can hear the high-pitched beep/ticking of my Sonic Alert portable alarm clock faintly if I hold it right next to my ear without anything blocking it. When I went back to school before it was activated, we had a fire drill and I could hear the alarm in that ear.I can't hear much when I turn my iPod up all of the way, but some things that I have heard are someone smacking gum (so strange) and my sister will come up behind me and scream in a high pitched voice, and I can hear it. She just thinks it is so cool!
Side note: My hearing fluctuates, so I'm not sure how long this is going to last. Some of these sounds I could not hear before I was implanted without my aids in, so it's pretty weird. I don't mind it though!

Tinnitus
Old: I would get it occasionally (it was very quiet) before I got implanted. Once I got my CI, it went

away completely
New: Never had tinnitus before, until I woke up from surgery with an extremely loud roaring sound. It has since progressed into a steady, loud, chirping. It beats to my pulse- if I was running around, it gets faster. If I'm just laying down, it gets slower. I only hear it without my processor turned on.

Activation

Old: I kept a log on Microsoft Word of my activation experience and all the new sounds I am hearing. I have not updated it since November of '07, but it is 14 pages long! It's really cool going back and looking at it, and I encourage anyone to do so if they are not already keeping some kind of blog or journal! I also think my writing has matured a bit since then... Here is an excerpt I wrote in it shortly after activation,

"When I was first activated everything sounded like beeps. It was weird, but it quickly got better. Within an hour everybody sounded like Mickey Mouse on helium! When my sister laughed in a dramatic low pitch it sounded so high that it was impossible to imagine! However the next day I was able to understand many things without lipreading. Then people began to sound like Donald Duck. It was pretty funny, I have to admit! The next day, people started to sound like a robot mixed with Donald Duck. The more I practiced with the implant, the better it got. Starting the day of my activation, I listened to music with just my implant. At first it just sounded like a cacophony of sound, but if just got better and better. Within 2 days I could understand the lyrics of songs. About a week or a week and a half after activation I bought an iPod since mom “misplaced” the other one. Once again, the more I listened to it, the better it sounds."

So there's how I got my blog name! More about that in another post.. And the "misplaced iPod" comment- my mom took up my iPod after my hearing got worse (which I think was a very cruel thing to do!) because she was afraid it would further damage what I had left. She promised me I could have it back once I got my implant, but by then she had forgotten where she'd hidden it!

New: Sounded like wind chimes at first... Progressed pretty quickly. I was listening to music and talking on the phone (with my AV therapist, not my friends- that's more of a challenge!) within 3 or 4 days!
FM

Old: Oh my word. A complete and utter disaster! The static was so annoying, and the batteries die every 10-15 minutes because I use a really,really strong map on that side. I've deemed the FM hopeless for that ear, and even my audiologist has said there's really not much else we can do to make use of the FM better on that side.
New: Static at first, but went away once we found the right FM. I haven't tried it in the school setting yet, but I have my fingers crossed for the start of school next week.
Note: Yes, I am only going to wear an FM boot on one side. I'm hoping it will also allow me to hear what is being said by the rest of class, if the sound coming through the mic only reduced on one side. We'll see- I'm cautiously optimistic.

Staying On
Old: My ears look pretty much the same, so I'm not really sure what the deal is! I guess my right ear is just floppier! The processor is constantly falling off of my ear when I'm doing everything from just sitting there, to baking, to running around, and it was a real pain when it fell off when we were doing a group obstacle course where we were all standing on a wire trying not to fall off at a camp I went to this summer. It was a camp for kids with hearing loss, and the "counselors" were audiology/SLP students, so someone picked it out of the dirt, and handed it to on of the students, who tried to simultaneously balance herself while putting my processor back on my head. The problem was she was on the other side of me and couldn't see my ear, so it took a little while-- and then fell off again! The magnet stays on fine, though (until the processor drags it down to the ground as it falls!)

New: Stays on, no problem! I was pleasantly surprised, because I did not want to deal with two things constantly flying off of my head!

Violin

Old- After I got activated, I apparently started playing really quietly. Which is not a good thing, considering I'm already a pretty timid player!

New- Went through the whole "playing quietly" period again. My violin teacher thought I could tell better when I was in or out of tune, and did more auto-correcting. I guess he's right, I never really noticed it...

Speech

Old- I began pronouncing the soft sounds that I had not heard or said in a while. "House" became "House" again, instead of "how". The /s/ and /x/ sounds came back into my speech!

New- Suddenly I began getting comments left and right about how my speech sounded so much "crisper" and "clear". It was kind of an awkward conversation to have, but I guess I can give the credit to my new implant!

Note: My speech really wasn't all that bad before, really! Sure, it wasn't perfect, but you couldn't tell I had trouble hearing just from the way I spoke (until you asked me a question and I answered it completely wrong- ha!). I will have to record myself speaking someday and put it on here...

Music

Old- Much better than it was with hearing aids. No more distortion distortion. The first song I heard when I was activated was by KT Tunstall, who I later found out, interestingly enough, has a deaf brother with a CI! I didn't think music could sound any better.

New- I was proved wrong! Listening in stereo using my headphones is soo much better! It's so cool to be able to listen to each instrument and understand the lyrics

Anyone out there?!

That's all for now, folks! And lurkers- please don't be afraid to come out of your shadows! I don't bite! I can see how many people visit my blog per day and it doesn't nearly match up with the number of comments! While I get plenty of comments on the Community (which is a great resource for anyone looking into or that has CIs, and I recommend you visit!) y'all here in the blogger world seem to be slackin'! I'd like to hear what you have to say, even if you just want to leave an anonymous comment- fine with me! So come on guys, something-anything! Just let me know that I'm not talking to myself!

In Summary- 8/19/09

I was asked to give a summary of all of my thoughts on being bilateral, and I thought that was a good idea, so here I go. Basically, 2>1! I had a significant amount of residual in my unimplanted ear using a hearing aid before going bilateral, but I have found that having two implants makes a world of difference, rather than an implant and a hearing aid. I feel like I can hear more of the subtleties of music, and I don't struggle nearly as much in noisy situations. I have found that while my two ears are completely different, they complement each other beautifully. I prefer my newer ear over my older one, and find it better for talking on the phone. If anyone is contemplating going bilateral, my advice would definitely be "Go for it!" but also understand that your journey is not going to be exactly the same the second time around. Upon first getting a second implant, there is not as much of the "WOW!" factor since you can already hear sound. However, it is much easier and less fatiguing being bilateral, and I highly recommend it!

No Two Ears Alike- Part 4: Frustrations

This is a series of "flashback" blog posts on my journey through going bilateral. To read the other posts in this series, click on the following links.

Part One

Part Two

Part Three



By all means, I was doing pretty well with my new implant. I had gone to AV therapy 4 days after it was turned on, used the phone with my new side alone(!) and she told me I didn't have to come back unless I really wanted to. No thanks!


The problem was, I felt like I was living up to everyone's expectations except for my own. The drawbacks of being a perfectionist!


Time went on, and my implant stopped cutting out, and my ear started to feel better. I could finally focus on just the hearing part... until about two weeks later. I was sitting in the car, on the way to school, when suddenly my left side cut out. I hoped it was an isolated incident, and kept quiet. Then all day at school, it continued. That night, a blast of pain came over my left ear. Great. Here we go again! At least we knew the two things were connected!


I had to go back to my surgeon where he did the same "cleaning out" of my incision. I took a look at his office and hoped it was the last time I would need to go in there! As far as the cutting out went, we would turn up the manual power percentage. It would work for a little while, and then it would start cutting out again. I finally decided to just deal with it, and hope it would go away on its own. It's tough going to so many appointments during school, so I figured I would just deal with it during the summer.



Meanwhile, at school, we were down to the final three weeks. It was cram time, time to squeeze in all the work that needed to be done but was never gotten to, in right before exams. Fun, right? In my gifted and talented/English class, our teacher decided we would have to pick one of three books and read it in two weeks. These were long, very difficult books. Instead of having the usual teacher-led class discussion, we would break up into literary circles and discuss it completely on our own, and would have assignment for each meeting. At the end of the book, we'd have a test. Most of the kids in my class were actually pretty excited about it since we got to pick who we were with, and so was I.


The day came to choose, and I decided to be smart and try to pick people who I knew would stay on task and would actually discuss the book, because after all, I wanted a good grade on the last test of the year! I got into a group with my best friend, as well as with some friends, and a couple of girls that I wasn't too close with, but I knew they were really smart. I'd be lying if I said we didn't have the smartest group of kids in our circle! :)



The first day of our literature circle, a girl I'll call Jane began to read her assignment. One sentence into it, and I was cringing. We have an extremely loud class, and we were all in the same room discussing. Jane probably has the quietest voice in the class. I couldn't hear a word she said. I then realized that not only had I picked the smartest kids in my class, every single person in my group was extremely soft-spoken, except for my best friend, who I'll call Nicole. We had to summarize what each person spoke about after they spoke, and it was my saving grace that Nicole read each word of her summary aloud as she did it. The only information I got was the two to three sentences we wrote in the summary.



For the next few days, I agonized over what I was going to do for the next circle. It was all think about. I finally decided that it would be best to situate myself to that I was right near the middle, therefore close to everyone that spoke.


Jane begin to read her paper. Once again, I couldn't hear her. Finally halfway through, Nicole interrupted her.


"Hey Jane, could you speak up a little? Sorry, I'm like deaf..."


At which point I exclaimed, "YOU?!" and we all got a good laugh. (She's completely hearing, if you're wondering!)



"Okay, then it will help all of us!" Nicole said.

It felt good to know that I wasn't the only one struggling.

Jane began reading again. I still could not hear her. Nor could I hear the rest of the group. I did my best to glance at everyone's papers, but I was frustrated. Everyone else seemed to be able to discuss at ease, while I just sat there trying my hardest just to catch a word or two.

That afternoon, I went and sprawled across the couch and cried like I never have before. I sobbed inconsolably for hours upon end. It just wasn't fair. I was mentally exhausted. For the first time in my life, I actually wished I wasn't deaf. Everyone else seemed like they had it so easy. I couldn't help but wonder if things would be different if I could hear like every one else. I had an Algebra exam the next day, and skipped studying in place of crying and feeling sorry for myself. This might not seem like a big deal, but I'm that kid who studies for hours while everyone else studies for 15 minutes, and Algebra is a high school course that goes on our GPA, which means I freak out about it even more than usual . It's not because I need to, it's because I felt like I had to know that I did everything I possibly could in hopes of getting a perfect score. I was under way too much pressure, 99% of which I had placed on myself.


I even began to question if I had made the right decision. Yes, I could hear better, but a little voice in the back of my head wondered if maybe I should have waited until the summer? I could only deal with so much at one time.

Then I began to feel pain in a different part of my incision, lower down than I had initially. I had learned my lesson, and this time went back to my surgeon immediately. So much for last time being my last time! It turns out I had an inflamed lymph node. Yipee. He put me on antibiotics for ten days, and all that was left was to keep our fingers crossed.

"What doesn't kill you makes you stronger." is a phrase that I say quiet often. I began to question its validity!

I have to say, I was really hesitant to write this, which is part of the reason I didn't post it while it was actually happening. No one wants to say that they're struggling, and I think as much as we don't want to admit it, CI recipients are constantly being compared (and comparing themselves) to one another, even if it is unspoken. Even the best performers struggle at one time or another, and I think it's important to acknowledge that. I think my main motivation for writing this is to say "Don't give up! It will get better!"

And it did. But I've already written way too much, so stay tuned!

On a happier note, here's a really funny video that's been going around like crazy on the internet.

Here are the lyrics to the song that is playing while they're dancing.

1,2,3, 4..

Hey (eh)

Forever

Hey (eh)

Forever
It’s you, and me

Movin at the speed of light into eternity (yeah)

Tonight, is the night

To join me in the middle of ectacy

Feel the melody and the rhythm of the music around you (around you)
Ima take you there, Ima take you there

So don’t be scared, I’m right here, ya ready?

We can go anywhere

Go anywhere

But first, its your chance

Take my hand

Come with me
It’s like I waited my whole life

For this one nightIt’s gon be me you and the dance floor

'Cause we only got one night

Double your pleasure

Double you fun

And dance forever ever ever

Forever ever ever

Forever ever ever

Forever (forever)

Ever ever ever

Forever ever ever

Forever ever ever

Forever on the dance floor
Feels like were on another level (ohh ahh

)Feels like our loves intertwine

We can be two rebels

Breakin the rulesMe and you

You and I

All you gotta do is watch me

Look what I can do with my feet, baby

Feel the beat insideI’m drivin, you could take the front seat (front seat)

Just need you to trust me (trust me)

Girl girl girl

It’s like now
It’s like I waited my whole life (oh)

For this one night (one night)

It’s gon be me you and the dance floor (dance floor)

Cuz we only got one night (ohh)

Double you pleasure

Double your fun (yeah)

And dance forever ever ever (ohh)

Forever ever ever (ever)

Forever ever ever (ever)

Forever (forever)

Ever ever ever (ever)

Forever ever ever (ever)

Forever ever ever (ever)

Forever on the dance floor
It’s a long way down

We so high off the ground

Sendin for an angel to bring me your heart

Girl where did you come from?

Got me so undone

Gazin in your eyes got me sayin

What a beautiful lady

No ifs ands or maybes

I’m releasin my heart

And it’s feelin amazing

Theres no one else that matters

You love me

And I wont let you fall girl

Let you fall girl (ahh ohh oh oh yeah)

Yeah, I wont let you fall

Let you fall

Let you fall (ohh ohh)

Yeah yeah

Yeah yeah
It’s like

It’s like I waited my whole life (whole life)

For this one night (one night)I

t’s gon be me you and the dance floor (me you and the dance floor)

Cuz we only got one night

Double your pleasure

Double your funAnd dance forever ever everForever ever ever

Forever ever ever

ForeverEver ever ever

Forever ever ever

Forever ever ever

Forever on the dance floor
ohh oh oh oh oh oh ohhh yeah

Forever ever ever ever

Forever ever ohh

*I apologize for any mistakes on these lyrics. I copied them off of a lyrics website.

*Be sure to scroll down and pause the music playlist before watching*

This is my future wedding! If only I could dance...