The Bionic Sound Project

this girl’s journey to sound

Deaf Culture and Attitudes (and upcoming CI events) Thursday, November 2, 2006

today was just…WOW, for lack of a better word. had a long talk with Mary Karol this morning, and I felt so much better after it. I’ve learned so much about deafness and deaf culture, and the differences between big D, small d, and small-d-that-became-big-D, and the beliefs within those groups. I’d expand on it, but it’s so complicated, and cannot be summarized here. But basically the attitude comes from small-d-who-become-big-D, that causes the division within the community, but I think it comes from all sides.

However, she did have a good point, where people like me, will have a hard time, because we can slip easily in and out of both worlds. My deaf-institute friends, those that are big-D, have said the same thing as well in conversations with me. Being able to talk and be understood by hearing people, playing by hearing-culture rules. And then I’m able to slip into the deaf world, and sign (not that well as in pure-ASL, but I am good at understanding, not expressing). But the issue is jealousy, because not everybody has that opportunity or those skills. It makes sense when you think about it. I definitely wouldn’t trade who I am and my communication style for anything.

We also checked out the room for the holiday party, and it was the first time I’ve been in the new SDC and I was blown away by it. It’s still under construction, but should be finished by next week. I’m excited because the students can help with the planning/prep of the party and other events throughout the year because it is our organization, so I am going to help out with that.

didn’t meet with mandy/do sound&beyond this morning, cuz of audiological training this morning. I did have speech with Karen today… that “th” sound is giving me trouble now.

FRIDAY, DECEMBER 15, 2-4:30 PM, SDC-1300 – BE THERE OR BE SQUARE.
open to both CI/non-CI, deaf/hoh/hearing students, faculty, staff, and friends

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The Big Day Soon Arrives…(T-10 hours) Sunday, July 9, 2006

Tomorrow’s the big day. Just less than 2 hours till the magic midnight hour of no more food or drink. 9 hours and 17 minutes till I’m on the table (at 7:30 am), having a hole drilled into my head, and part of my skull hollowed out.

The surgery itself will take an hour, but there’s an hour after the implant, where they test it to make sure it’s working. If it isn’t, then they take it out and put the backup implant in. The only wish I had would be that Megan would be there, instead of the other audiologist, since I haven’t met Kim yet and feel nervous about that.

Right now, I am on the verge of freaking out. Earlier today, I was thinking about not going through with it. Then I realized it was ridiculous to come this far and spend ALL this money and time only to go, “oh wait, I don’t want to do this after all”, especially for insignificant reasons due to my anxiety of it all.

I’m not scared about the surgery itself. I’ve got competent and excellent doctors behind this, who are working together. I don’t have to worry about bleeding, because they know what to do to treat that if it happens. Rather, the biggest thing that I’m scared of is what happens afterwards. What is it going to be like? Am I going to regret this? What is sound going to be like? Am I going to hate the way the world sounds, and prefer my hearing aids to this cochlear implant?

I’ve got my doctors and every person that I have undergone tests with, who have looked at my audiological history and said “you are an excellent candidate”. Some of my friends, who have gotten their implants recently, absolutely love theirs and are doing well with it. But I have this feeling that if something were to go wrong, I would have SO much more to lose.

Right now, I’m sitting here typing up my thoughts and playing all my favorite songs, even cheesy ones like Hanson’s “MMMBop”, which just popped up on my list. I want to memorize the sounds of my favorites one last time before I lose all my “natural” hearing in the right ear.

I don’t know how I’m going to survive one month without sound in one ear. Music and sound have always been a part of my life, since I first put my hearing aids on at 4 months old. I have a long road ahead of me in learning to “re-understand” sound. I know that once I get activated, it’s not going to be the same as the hearing aids, and I have to keep reminding myself of that fact.

This is the moment where I need to take a leap of faith and just DO it. That’s been my whole life…taking a leap of faith and hoping for the best. It hasn’t failed me yet.

5 am, here we come. Bring it on.

 

Pre-Surgical Appointment Thursday, July 6, 2006

Today was the pre-surgical appointment. My dad is starting to take an interest in this whole CI process, and came along to this appointment. My stepmom couldn’t go because of work, but I would have loved to have had her there and involved with this. My mom came along as well, and it’s just amazing how well she’s moving around after having major back surgery.

At my first appointment with my doctor, he learned where I go to school, and mentioned that there was another girl from my school who was also getting a CI. I had a feeling I knew who, but due to the laws, he couldn’t tell me (and he couldn’t remember). Through talking to a mutual friend of ours (who also has a CI) about some CI stuff, he mentioned her to me, so I sent her an IM tonight and we chatted. It’s funny, because she was one of my old residents on my floor when I was an Resident Advisor, and we lost touch. Now we are going to compare notes and post-surgical procedures. I thought it was kind of weird, because he was trying to schedule us both for the same day.

In short, I am just pleased that my dad is starting to take an interest in this stuff, because it means a lot to me. And the transportation issues have been worked out, because my mom can’t drive yet, and I won’t be able to drive us home the next day. So my dad is going to drive us to the hospital, and then bring us home the next day.

Today, I had to get two vaccines: pneumococcal polysaccharide and Hib. Personally, I would rather get a shot than have blood drawn, because my left arm hurts sooooooo much. After today, getting blood drawn seems to be the better of the two evils.

Right now, the only thing keeping me from surgery is the hematologist’s clearance. I had my blood tested last Friday, so hopefully everything checks out. My doctor just doesn’t want me to start having issues with bleeding in surgery, or having bleeding into my head after the procedure. But other than that, I’m pretty much all set to go.

And before anybody asks if I’m nervous, I’m not. I’m just…neutral. At this point, I really don’t want to talk about it anymore. Course, I’ll probably freak out on Monday.

On an unrelated note, my sidekick-phone is being a pain in the butt. It keeps dying and restarting on me. Hopefully after the surgery I will be able to get a new phone and maybe even LISTEN on it!

 

Evaluation with the Speech Therapist Friday, June 23, 2006

Today I met with Susan, the hospital’s speech therapist, to undergo the speech part of the CI evaluation.

When we arrived at the hospital, there was a crime scene bus, a police car, and the coroner’s van parked in the circle outside the main entrance. I was wondering what was going on, and was teasing my mom that it was like a episode of Law&Order. I was nervous going in there, because I had never been to that hospital (Desert Sam) and the directions on where to meet her were complicated. The other part of it was that my experience with speech therapists in the past has usually not been good (save for a few gems), so I was dreading going to the appointment. Mom reassured me that she sounded very nice over the phone, but experience leads me to be distrustful.

Susan was waiting for me at the Physical Therapy admissions counter, and after standing there for a few moments waiting to register, she turned to me and asked if I was meeting with her. She also had a graduate student “shadowing” her today, who also did some testing. We did the usual battery of speech-stuff, and I did extremely well on all of them, and they both were impressed with how well I have done with my hearing loss.

The speech tests help determine how well I can speak and understand words. The results helped her to figure where we would need to start in therapy, post-surgically. I won’t have to start at the very bottom of the ladder, but will be more towards intermediate training, because of my comprehension.

The whole experience left me feeling positive, because she was absolutely awesome. I am so happy that I can have her (and Karen) as my therapists, and now I have one for home and school. It’s a relief to know I have a team set up in both states, ready to deal with me after the surgery and help me learn to make the most of my implant.

 

Audiological testing and a curveball has been thrown into the plans Thursday, June 22, 2006

Oh. My. GOSH. Talk about a total curveball in your plans. They’ve moved up my CI date to the 10th or the 12th instead of the 26th.

I met with Megan today (the audiologist) and she gave me some hearing tests that I hadn’t had at school (specifically, the HINT test, among some others). For me, the results were shocking, and in a way, a real eye-opener.

11% on sentences spoken in a noisy environment, no lip-reading.
24% on sentences spoken in a non-noisy environment, no lip-reading.
08% on words spoken in a non-noisy environment, no lip-reading.
100% on sentences spoken with lip-reading in a quiet environment.

The words that I got right? The, and, of, (and so on) consistently. That is what makes up the 11%/24%. And one word…I think it was something like “watched”.

All I have to say to this is that some of my friends will remember the “bastard pony” misunderstanding from my recent birthday party. The results of these tests are a perfect example of how I can hear speech but not understand what is being said.

The basic fact remains that I, without any source of lipreading, am DEAF. I will continue to be deaf even after the implant, but hopefully we can bump up my comprehension level to that of a hard-of-hearing person or better. I can play the part of understanding everything, but I am not hearing and understanding everything that is being said. I hate group conversations with friends or family, because I can’t follow everything, and people don’t slow down or look at me to help me to understand. This is why I space out a lot, because my brain gets tired from trying to fill in the missing words and to understand what is being said. That’s why I feel left out or not a part of things a lot.

So with the results of those tests, along with some big questions that were answered today, I am basically an excellent candidate for the CI. At this point in time, I am definitely a GO for surgery (except for the clearance from the hematologist). I can’t wait to get it, but at the same time, I am scared to death, because my life as I know it will change. What I used to know as sound in the world will be opened up to greater heights. Some things I will have to do differently, won’t be able to do, or ever get a chance to try (metal detectors, MRIs, scuba diving). That, and having a hole drilled into your head is scary enough.

The other thing that was mentioned today was that my surgeon has had several patients who have come back after surgery and were able to wear a hearing aid because their residual hearing wasn’t destroyed! The reason for this is because the implant didn’t go past the apex of the cochlea, so those low-frequency cells were still present. There is no guarantee that will be the case with me, but let’s hope that I will have some low frequency hearing after surgery, because that will help in an environment without my hearing aids.

So yeah, two weeks till surgery. I still have three more appointments to do: speech therapist, hematologist, and then my pre-surgery appointment.

Bring it on.

 

Imaging Tests Of The Head Tuesday, June 13, 2006

Today I had my CT and MRI at 11:45 am.

I started off with a “CT of the temporal bones, no contrast, axial and coronal”. That was short and fast, nothing to it.

I was then led out into the little waiting area, where I had to wait for the guy to come out and take me for my MRI. 10 minutes later, he was there, and we were talking about what we were going to do today, which was a “MRI with and without gadolinium of internal auditory canals and posterior cranial fossa”. He was curious about the CI, so I had to explain it to him and he was asking me all these questions about it. After we went through everything for the procedure, the realization of what he said really struck me…“Are you ready for your very last MRI ever?”

edit 1: I had to cancel my follow-up audiological appointment with Megan on the 14th, because I was sick from the Gadolinium injection. Rescheduled to the 22nd.

edit 2: I got a thank you card from him a few days later, with a personal note inscribed in it, hoping for the very best with my implant and that I would do very well with it. I have never seen such a kind and thoughtful gesture from a diagnostic testing place, especially somebody that I will probably never see again. So that was an “awww” moment for me.

 

Canceling my first audiologist appointment. Monday, June 12, 2006

This morning I spent nearly 5 hours at the hematologist with my mom. I was grumpy after being there for way longer than expected, and then became disappointed because I had to cancel my audiologist appointment. I was looking forward to talking with Megan, plus getting the ball rolling with the process of getting the OK for the CI.

I have to go back next week to the hematologist because they want to run some tests on me for the bleeding disorder. I am not looking forward to it, because the last time I was there and they drew blood, I threw up and almost passed out. How embarrassing.

Tomorrow I get a CT scan and a MRI of my temporal bones (otherwise known as one of the bones of the skull, so they can see the structure of my cochlea/head).
Wednesday I meet with the audiologist and get the HINT test and some other ones.

And then the last thing I have to do is to set up an appointment with the speech pathologist from the hospital.