Complex Issues

With the surgery day being so soon there are several things that have crossed my mind. I just didn’t want to bombard readers with tons of disorganized thoughts, but then again no one has to actually read what I post. 😉 Feel free to ignore my posts if I get a bit post crazy at times.

Some people have encouraged me to record my thoughts through this whole process so I’m trying to do this for variety of reasons. I’m also hoping to maintain this blog for at least a year. I’m sure after a couple of months I will start blogging less about CIs as it becomes more part of my life. I’m hoping to eventually get back to blogging more about my genetic counseling student experiences and genetics.

I think people in general don’t fully appreciate how complex the decision to get a CI is. It’s so much more than just trying to improve my communication skills within the hearing world. It will impact my relationship with the deaf community and the hearing community. Even just considering a CI has a lot of impact on how I view my deafness. Do I view it as a culture? Do I view it as a “disability?” It also affects how others view and act towards me. This is a very complex issue and is one that is hard to 100% explain successfully. I grew up as an “in-betweener.” I am in between both the deaf and hearing world and I do not belong 100% fully to either world…neither world 100% accepts me. There are pros and cons to being in between 2 different worlds with different views.

I’m the kind of person who looks at things in gray and not black-white. This then causes me to question and think about things all the time. This also means that my perspective and attitudes towards things constantly changes.

In some ways the surgery itself makes me feel like I’m going to end up with self-inflicted wounds. What do I mean by that? I just mean that I’m electing to undergo a surgery that I don’t have to have. So, why do I want it? Obviously I want to hopefully improve my lipreading and speech abilities. Aside from that I can’t fully explain why. I just know that this is something I’ve wanted to do for a long time even though it is somewhat of a risk. Sometimes you have to take risks in life. I just hope that this won’t be a risk I’ll greatly regret. I promised myself that regardless of the outcome that I would make the best of it and learn something from it.

I guess the whole point of this rambling post is that getting a CI will affect how I view myself and how my friends view me. There’s just more of a psychology impact that comes with getting a CI than a lot of people realize. I know I’ll be questioning things a lot within the next few months but I’m prepared for that.

As of right now, I’m not sure which will be worse. 1) The final hour before surgery or 2) The 2 week wait to be “activated.” I have a feeling the wait might be worse, lol.

I also want to make it clear that I’m not reconsidering this at all. I just wanted to bring some of these issues to the table because it’s something that people don’t discuss a lot. When they do, they tend to overlook it or sugarcoat it. So, don’t read too much into this. 😀

How Cochlear Implants Work

I have been trying to find a decent video clip about how cochlear implants work. I can’t seem to find one that meets my standards. They’re either too long, not clear enough, or too graphic.

These are the best ones I could find that were short (the first one is a bit over a minute long and the second one is about 40 seconds long).

http://www.youtube.com/watch?v=Poyj7U2wzhQ&feature=related

http://www.youtube.com/watch?v=ECT6FY4cby0&feature=related

I’m a visual person myself so I’m going to post some pictures for anyone who wants to see exactly what a cochlear implant looks like (all pictures are from Cochlear’s website). There are 3 CI companies. I chose Cochlear Americas’ Nucleus Freedom.

This is the implant that will be surgically implanted on the side of left head. The little circle silver part is the magnet itself:
In the above picture you can barely see the little curl at the end of the electrode array. Below is a close up of the part that will be put into my cochlea. There are 22 electrodes which basically stimulates the auditory nerve.

To illustrate the size of the implant itself:

A couple of weeks after surgery I will receive the external device/sound processor which will look like this (mine will be silver with dark brown magnet to help it blend into my hair somewhat). The size is about the same size as a hearing aid except it’s a lot more “thicker” and will stand out more than a hearing aid does:

Surgery Date Change

So as you know the surgery date was changed from 1pm March 5th to the morning of March 10th. It has now been changed back to March 5th at 8:15 am with check-in at 6:15 am. Folks, if you haven’t been paying attention to the calendar March 5th is next Thursday. Surgery will last about 2 hours then I’ll get to go home 1-2 hours after surgery if everything goes well.

Yay!

Maybe it’s just me but it feels weird to say “yay” for surgery.

Am still waiting on the results from the staph culture so hopefully that will come out negative and I can continue to move forward with surgery next Thursday. Cross your fingers that this won’t be something that will interfere with the surgery date.

I’m still excited and nervous but I’m a bit tired of saying the same ordinary words over and over….thus…I have decided it’s time to invent a new word. How about combining those 2 words to form these possibilities: exivous, excous, nerited, or nerxcited? Suggestions? 😉

Will My "Homing" Ability Be Disrupted?

This is kind of a cheesy post.

Ever since my CI surgery has been scheduled I have had these moments where out of the blue I think to myself “…I’m going to have a magnet in my head?!…seriously?!……that just feels so….abnormal and weird.” It’s kind of hard to grasp that concept when I really stop and think about it.

Anyways, I was scrolling through msnbc.com headlines and saw one titled “Florida Tests Using Magnets to Repel Crocodiles.” Since magnets have been on my mind lately and how it will affect a couple of things (e.g. airport security checkpoints and MRIs)….I decided to click on the link to see what I will have in common with crocodiles.

From the article:
“Wildlife managers in the state are taping magnets to the reptiles’ heads in an attempt to disrupt their “homing” abilities. “

“Scientists believe they rely in part on the Earth’s magnetic fields to navigate, and that taping magnets to both sides of their heads disorients them.”

Tune in a few days after surgery to see if I found my way home. 😉

KU Basketball

I forgot to put in the last post that KU beat OU!!! Whoo-hoo! It was a pretty good game. I went to BW3 with a bunch of friends to watch the game which just made it even more enjoyable.

Surgery Date

So, I have the sort of luck where if I say something about something it gets jinxed. 🙂

Sure enough, less than 10 hours after I posted the last entry about surgery being next week….I got an e-mail from my audiologist saying that they had to change the surgery date from March 5th to 10th. I’m guessing there was a scheduling conflict. I’m not too surprised that this happened. Especially since it’s just a CI surgery…it’s not surgery for something that’s life-threatening, for pain, for illness, etc. I’ve also learned a bit more about the behind-the-scene stuff during my genetic counseling clinic rotations about why things always seem to get rescheduled and why we end up having to wait in the waiting room forever. I’m just glad that it wasn’t postponed that much. I just hope March 10th will be the official day!

The one good thing is that the surgery will now be in the morning and not in the afternoon. I wasn’t too thrilled about the surgery being in the afternoon. You know how hospitals seem to operate on their own time zone and nothing ever seems to happen on the scheduled time. I was a bit concerned that things may run a bit late and then I might end up having to stay overnight which I SO SO do not want to have to do! Now that the surgery will be in the morning….it’ll allow more time if things get behind schedule and for me to recover before heading home. Surgery has been scheduled for 11:30 am on March 10th, but the doctor’s hoping to get me bumped up to 8 am.

Just gotta be patient and play the waiting game a bit more. 😉

Next Week

I don’t pay much attention to dates/months. I’m lucky if I get the year right! Ok, so maybe I’m exaggerating a bit but you get the idea.

I’ve tried to make it a point to pay attention to the dates and how many weeks I have left until the CI surgery. I just knew that if I didn’t I would probably not realize until the day before surgery. Even though I’ve been trying to pay attention to the dates, it feels so weird to say that next week I’m having a CI surgery…it makes it seem more real.

People keep asking me if I’m excited?

Well. I’m not exactly excited about the getting cut up and sewn up part. Aside from that part…yes, I am. Too bad I can’t just skip the whole surgery part.

I’m the kind of person who HATES being taken care of. I HATE when people have to reschedule their day for me. I HATE when people have to wait on me and I also HATE waiting. I HATE when I have oodles of strangers touching me. I HATE being confined to a small room. Well, all of that comes into play when one has surgery. Too bad I can’t show up at the hospital already knocked out so I don’t have to deal with all that. 😉 I have a somewhat short attention span, am sensitive to touch, am a bit claustrophobic, and independent. I won’t completely freak out though, I can handle it. I just keep having to remind myself that it’s okay to let others take care of me and I will appreciate it when I need it. 😀

I have watched youtube clips of CI surgeries. I wouldn’t necessarily recommend this to everyone. I’m just the sort of person who likes to know exactly (or as much as possible) what will happen. It’s one thing to watch a surgery that you won’t have and another thing to watch one that you will have. I thought it might make me scared, but it didn’t. It made me more interested in the surgical technical stuff. I actually want to see all the instruments/tools they use and machines they use. Although, I must admit it’s going to be weird being undergoing something that’s 100% out of my control.

I know I probably sound like I’m freaking out about surgery. I promise, I’m not freaking out about it. I’m just blogging about it because I’ve found that a lot of people who blog about their CI surgeries (or other surgeries) tend not to talk about their thoughts/perspectives/emotions prior to surgery. There’s always this gap in their blog entries that just completely skips pre-operation stuff.

I do have to get a staph culture done this week to make sure I’m okay for surgery. I’ve had recurring staph skin infections growing up. Hopefully that will show up negative and I won’t have to postpone surgery. I still have to have all the blood work done. If everything goes well, surgery will be next Thursday (March 5th ) at 1pm (although I have to show up at 11am and do some waiting while getting poked with needles), it will last ~1.5 hours. If things go well during surgery then I will head home late afternoon/early evening with a GIANT bandage on my head that will make it look worse than it really is.

Between now and April 21st I will have a grand total of at least 10 appointments (including mappings). Oh, joy. There goes all my gas driving to/from appointments.

So yep, next week is March. Which also means March Madness begins….whoo-hoo!!! Rock Chalk Jayhawk, KU!

Sounds

This is going to be a challenging topic for me to write about. I’m going to try to write about this in a way that hearing people can hopefully understand what I’m trying to say. What’s so difficult about that, you ask? Well, that means I have to think like a hearing person does and I have to take into account what I think their experiences are with sounds How can I do that 100% successfully when I can’t hear? I can’t, but I will try my best. 🙂

I cannot describe sounds with words like hearing people can. I simply can’t. I don’t fully understand it when someone says something sounds beautiful, relaxing, etc. I understand that the sound itself is associated with those emotions. However, I don’t understand what makes a sound sound beautiful. I was listening to music earlier and I realized that I have never used the word “beautiful’ to describe a sound. Then I started thinking a bit more about what I use to describe sounds. I think music is a good example to show how limited my descriptive words are. I oftentimes use youtube to listen to music. Why? Because I can watch the music video too and I can read other people’s comments on that particular song. How do I usually describe music when someone asks me? This is usually the list that I choose from.
“I like it.”
“I don’t like it.”
“I like that beat.”
“That’s too boring.”
Yeah, that’s it. Notice it all has to do with if I like it or not. Nothing has to do with how the sound sounds itself.

If someone asks me how to describe a certain sound. I automatically want to start gesturing or use an object to describe it (which I have learned hearing people don’t understand when I start gesturing to illustrate a sound. I usually have a 50/50 chance of a deaf person understanding what I mean). If I’m asked to describe a sound without gestures or visual images…I will usually describe it by the pattern of the sound itself (not the volume, not the pitch, etc.).

I actually tried a mini project once. I wanted to figure out a way that I could describe sounds without words that hearing people could understand also. As a deaf person, I’m naturally more tuned into tangible and visual stuff. Sounds are such an abstract thing to me. Anyways, I was hanging out somewhere once and I had some time to kill before going to a meeting. I decided to just focus on a piece of paper and try to kind of draw abstract shapes to represent what I was hearing at that time. While the completed project made perfect sense to me….I decided to throw that piece of paper away. I didn’t think it would make sense to hearing people and wasn’t sure if it would even make sense to other deaf people. I’m sure there are artists out there who have explored this in more depth and detail than I have…I just need to find them! 😉

I’ve also wondered how much of how we describe sound has been “forced” on us and how much of it is nature. I was thinking about a paper I read a few years ago that made me wonder about this. I read a paper that explained how humans are NOT naturally clean and cleanliness is a learned behavior. I wonder if this is similar with certain sounds. If we’re “taught” that certain sounds should be pleasant and others shouldn’t be or if it’s a natural thing.

The beach/ocean is an example.

I was 14 years old the first time I ever saw the ocean and I wasn’t wearing my hearing aids during that period of time. I didn’t grow up hearing the ocean. I was always under the impression that the sound of ocean waves hitting the shore was such a relaxing and pleasant sound. I mean, I would see it on those relaxation CDs on TV commercials or even alarm clocks (those kind with nature sounds to block out other noises so that it makes it easier to fall asleep). It would always come up when people would talk about relaxing places.

When I was 20 (wow, 5 years ago…man, time flies), I had a summer rotation in South Carolina. I was about 10 minutes from the beach and would go there quite often. The beach is not an ideal place for hearing aids (sand, moisture, water, etc). I can’t swim with hearing aids and am not going to leave something that costs thousands of dollars in my beach bag by itself while I’m in the ocean swmming. There were times where I did wear my hearing aids when I would go for walks on the beach in the mornings. Imagine my surprise when I first heard the sound of waves hitting the shore

It…was…not…a….relaxing, soothing, or calming…sound

It was loud, distracting, and annoying. While it was cool that I could hear something I never thought I would be able to, I was surprised that this was what so many people claimed to be a relaxing sort of sound. I kept trying and trying to figure out what made this a supposedly relaxing sound? My opinion is that it’s either a sound that drowns out other noises OR it’s a sound that people associate with the beauty of the ocean/beach fun. It’s the reverse for me. It’s a sound that drowns out the beauty that I see with my eyes (I get so distracted that I miss out on other things) AND I do not associate sounds with things.

Eventually I got used to it and started enjoying the fact that the sound changed with the intensity of the waves.

A more recent situation was in L.A. last fall when I went there for a conference. I think that was the first time that I truly enjoyed the sound of the ocean waves. I finally realized it was probably more about the rhythm of the sound itself than anything else (or maybe not?). I started to better understand how people could get lost in the rhythm of the waves hitting the shore.

Some sounds that make me smile are sounds that annoy hearing people and vice versa. Is that because I hear them differently, my brain processes the sounds differently, or is it because it’s a learned behavior that I never learned?

Darwin and Abraham

Happy 200th Birthday, Darwin!

Spoken like a true genetic nerd, eh?

It’s also Abraham Lincoln’s 200th birthday. Darwin and Abraham both share the same birthday. How about that?!

I Will Miss My Residual Hearing

As I explained in my last post, I don’t have a lot of residual hearing. One may think that it’s not a big deal that I’ll lose it whenever I get a CI.

It is a big deal to me. It always has been. My small window of residual hearing isn’t much, but it’s something that’s mine. It does gives me the ability to use hearing aids.

I will have no residual hearing in my left ear after March 5th. So weird.