Being Bionic

6:16 PM 4/19/2004 It has been about 2 1/2 weeks since activation. Last Thursday was my third mapping and second audio therapy session. Both appointments went decently, but they were tiring, especially since they were back-to-back and lasted an hour each! That’s a lot of listening.

The mapping appointment didn’t yield anything wonderful like I’d hope. I went hoping to get the volume increased because I figured I would hear a lot better that way, but I am not sure if he increased the volume or put me on a different kind of map, or both. He did try me on another map, which I absolutely hated because it made his voice sound like Darth Vader, and it was just awful. I told him I liked the other map better. However, ever since I left it seems like that this new map is louder but not as clear. It seems louder, but muffled, which is weird. I was going crazy for a couple of days after that mapping session trying to figure out if it was worse than before I went in. So that’s why I don’t know if it was a new map or not.

However, there is some good news: before he remapped me, he put me in the booth for some testing, and I did a lot better than I did two weeks before. I’m making progress! Dr. Wolfe came in during the middle of the testing along with Tami and he said that Tami made another comment about thinking my hearing aid must have been on because I was doing so well. LOL I offered to take it off if they wanted. At that point, I’d been wearing it as a “security blanket” even though it was turned off most of the time, and occasionally it was helpful to figure out what a sound was. However, that day I also got my old hearing back in and turned in the loaner, and it isn’t fixed like it was supposed to be. So, I’ve not even been able to turn it on, and ever since Thursday I’ve hardly even worn it.

The second audio therapy session went well, all things considered. It was especially tiring for me because I had JUST gotten remapped and was struggling to get used to the new map. The fact that it might be a different kind didn’t help. Things were louder but it just seemed harder to “navigate” with my brain, due to muffled-ish (yes, I KNOW that’s not a word!) sounds. We worked on some of the “Shh” words and other similiar words, and we did all these different excercises with words that consisted of testing me and etc. I can’t even remember what all we did now. I do remember that I couldn’t wait for it to be over, I was so tired already from trying so hard to listen with it. Right before we left, Tami wanted to try me out on the phone, so she went into another room and called the phone in that room, and I was to say whether or not she said “red” or “yelloW”. So we did that, and I got which ones she was saying. I didn’t really hear it very clearly, but I could hear the pattern of the words she was saying. At the end of the phone conversation, she said something else and I had no clue what it was, but my husband was telling me to hang up the phone so I did… Tami came back in the room and said “When you end a phone conversation, you are supposed to say “goodbye”". LOL! Oh well, I was overwhelmed and didn’t really think of it, so when my husband told me to hang up, I just did.

Other than that, things are starting to get a lot better with time, although at this very point in time I feel like I’ve hit a plateau, but I just need to pratice. I haven’t been doing that as much lately because I’ve been so busy. But I have discovered a new sound that I couldn’t hear with my hearinng aid, at least not very well: dog tags!!! Somewhere around the middle of last week I started noticing that I could hear the dog’s tags making noise when they ran by or went in and out of the room. I love that sound, even though it’s annoying. It’s cool to be able to hear it and know when the dogs are coming before I see them! At first it was pretty faint… now it’s pretty darn loud! I now know when one is following me without looking behind me.

Other sounds are starting to sound more natural and it is becoming easier to distinguish between them, such as clapping, clicking, scraping, barking, howling, shuffling, banging, fizzing, dinging, bonging, bubbling, water running, burping, etc. However, people’s voices all still sound like Donald or Daffy duck. They are starting to sound a little different from each other, but for the most part they are useless unless I am reading lips. I am a very long way from being able to hear what people are saying without either knowing the subject of the coversation or reading their lips. I don’t know if it will even be possible, but I hope so. My biggest dream is to catch every word, even on the phone. Perhaps it’s a possible dream…

As far as the dizziness and ringing, the dizziness has been a lot better lately, but the ringing has been worse. I discovered I could eat gluten again without hugging the toilet all night, so I’ve been eating stuff with gluten in it and that may be one reason the ringing has been so bad the past week or so. I am going to hold off on the gluten for a little while and see if the ringing gets better. The ringing actually isn’t bad when I don’t have the implant on, if it is even there. It’s when I first put the implant on in the morning, even at low volume, and when loud or drawn out sounds occur that trigger the ringing. The last week, all the tinnititus has been triggered by sounds from the implant. That’s actually an improvement from constant ringing from who knows what!

11:14 AM 4/8/2004 It has officially been one week since I was activated. Nothing major to really report on has happened, but it has been an adventurous and trying week! There have been lots of ups and downs. I have gone through periods of time where I absolutely hated the implant, and other times where I think it’s pretty cool that I can hear what I can out of that ear. I’ve laughed, cried, and screamed, and I bet I still have a long road of the same to travel…
It’s not as bad as it was at first, as far as not sounding very good. It’s improved a little bit; I can distinguish certain sounds and words a little easier. My brain has finally accepted that they are SOUNDS so it doesn’t seem as much like a horrible case of tinnititus anymore. My brain also getting more used to the volume; I am finding that I can slowly increase the volume and still be comfortable. That is good, because it seems the louder I can go, the better I can hear with it. unfortunately, “hear” is a relative term. Everyone still sounds the same, mostly flat, and I still only hear the drums or beat of music. I also still have to read people’s lips, if I am not reading their lips, all I hear is a series of beeps and clangs, with only slight variations. However, if I AM reading their lips, I can pick up a lot more and distinguish the sounds easier.

Some sounds are slowly becoming clearer and clearer. Some are sounds I love to hear, such as the birds chirping, knocking, footsteps on hard floors, and paper crinkling. I can even hear the shuffling of my jeans legs when I walk, which is pretty cool. I don’t recall hearing THAT with my hearing aid. However, there some sounds I can’t stand but can’t ignore! Some of these are my husband kissing in my microphone, clearing his throat (ARRGGHHHH!!!!! THIS one drives me INSAAANNEEE!!!!), and the rapid shooting of his video games. (Funny, they are all husband-related? Teeheehee!) I can hear a lot of other good and bad things also. Some things suprise me, and one would think I was tripping out on drugs to see me sitting or standing there, totally enamored with the source of the sound, doing it over and over! For example, one day I discovered how loud scratching the desk with my fingernail really was. So I sat there for several minutes just scratching the desk, with a big grin on my face! Hehehe! This has happened several other times with other seemingly minor or silly sounds. How to describe these sounds? Hmmm, compared to my hearing aid, they are VERY different. It sounds completely different yet slightly alike, they are definately more metallic sounding, blurred together, and not as clear. Often, I just hear a lot of clicking or whirring. This is just a matter of my brain training itself to sort it all out, however, not a fault of the implant.

I’ve discovered a couple of things I don’t like, but hopefully will be fixed somehow: It does not pick up some low pitches, and seems to completely miss out on some words that aren’t low pitched. I figured it out the other night during one of the reading sessions with my husband. It seems to skip over words that begin with high frequecy sounds, such as “SHH” or “Whh”. It picks up the first part, but either does not pick up the second part of the word, or barely does. Like the words “Should” and “Shall”. If my husband says “ould” and “all” by themselves, I can hear them fine. But if he says “Should” or “Shall”, It barely picks up the “ould” and “all” parts, if at all. I hear the SHHH parts ok though. That is getting annoying, because I get completely lost in the paragraph. We came across a phrase in a book that was nearly impossible for me to pick up: “wheat should be”. I plan on mentioning these problems to Tami today, during my “audio therapy” with her. Maybe she can help. Today will be the first “audio therapy” session.

8:13 PM 4/8/2004

The audio therapy went well. I almost forgot about the appointment due to a carpet shampooing disaster, and therefore did not have anytime to freshen up or do my makeup! Oh well. The audio therapy session basically consisted of a variety of excercises, mostly centered on seeing what I can hear, and me guessing at words that Tami was saying. It was difficult and tiring, but not so bad! She said I was doing really well. So that’s encouraging.

One part I rather enjoyed was when Tami gave my husband a little taste of my world. During one of the excercises, she would read off a list of words with her mouth covered, and I had to try to guess what she was saying and say the category they were in, such as fruit or states. She read off a list of weird volcano names to my husband, without telling him they were volcanoes, and he was to guess that they were volcanos. Well, obviously, he was completely lost!!! So now he knows what it’s like for me.

She told me to pratice listening by reading the closed captioning on the tv and trying to follow along, like I have been doing, and to get a book on tape and also the same book in print, and try to follow along. We also discussed the tinnititus and dizziness, which I was having a lot of trouble with. I told her about how it had been better lately, and my husband and I were suspecting that it may have been my hearing aid all this time that was making me sick! So I am to keep a log of the dizziness and ringing for Dr. Wolfe, the audiologist that does the mapping.

Speaking of mapping, I have had the processor on the loudest program and then up a notch or two on the volume all day. I am happy about that! I am now finding that the “noisy room” setting and the “normal” setting are way too quiet, so I am already looking forward to the mapping session next week so we can crank it up a bit!

About the problems with low pitches and missing some of the words, it may either be that my brain needs to adjust and learn to hear them, or the implant may just simply not be picking up on the sounds at the moment. I guess we will know in time.

That’s about all I have to say right now. I could say a lot more, but I would rather wait until I am sure about what I have to say before I write about it. Stay tuned!

So today is exactly 34 days since I’ve had the CI surgery, and I am now activated. But first, let me back up a few days and add in some updates, as this week has been so busy or overwhelming that I did not write on the actual days that some of the events happened.

Wednesday was my appointment with Dr. Baker. Nothing new, I told him about how I was still dizzy and my ears were still ringing. He gave me the same ol same ol “I’m sure that will be fixed when they turn the implant on.” He skirted around the issue of the dizziness, I think he just didn’t want to say nothing could be done. But I sort of got it out of him. He reccomended “Balance Therapy”. Great. More appointments. Anyway other than that, my stitches are finally bump free! I thought they were scabs, but he told me it was my skin growing over some stitches that hadn’t dissolved yet. So I asked him to pull them off and he did. And that was that.

Thursday was my initial activation day. My mom wanted to be there, so she met us at the Cochlear Implant clinic around 9:45. My appointment was at 10. We all met up there and went into the waiting room. The “Hearing Therapist”, Tami, came and talked to us a bit. She’s really nice and friendly, which is a good thing since I’ll be working with her an hour a week!

Finally, Dr. Wolfe came and got us and we all went back into this little room. It was small, and all of us were pretty squished in. He put my processor and stuff together, hooked it up to a machine, and put it on. I didn’t hear anything right away because he hadn’t turned it on yet. He went to his computer, told me to turn my hearing aid off, and then told me to tell him when the beeps got loud, but not too loud. Then he turned it on.

It was really weird, to hear something out of that ear after 12 years of not. I heard these really weird clicking and clanging noises, and at first it was really hard to tell if I was actually hearing anything or if it was just my tinnititus acting up again. But finally I could tell that I really was hearing something. It was really hard to tell him about the volume, because of my tinnititus and the fact that I hadn’t heard ANYTHING for so long, so I really just guessed the best I could about the volume. He had my mom and my husband talk along with him to see if I could hear them. I could. It was pretty cool, but weird… it sounded nothing like them, or any normal sound. All it sounded like was a bunch of electronic beeps or pots and pans banging together when they talked. No voices, just clangs representing their voices.

Dr. Wolfe and my husband seemed a little excited and my mom was definately excited, near tears. I was excited to, but not like that. I was more cautious, too afraid to be excited or happy about it, since nothing works out for me when I do that. That and listening to what I was hearing wasn’t really any fun. It was like a really twisted case of tinnitius, like weird clanging tinnititus that set off REAL tinnititus. When he had the volume all the way up on my comfort level, I could feel my eye on that side twitching, and my eyes would water whenever there was a lot of sound. My neck was also spasming a little bit. The eyball thing was uncomfortable but not too bad. But that tinnititus… almost immediately I started panicking a little bit because all this time I thought the tinnitus would go away as soon as they turned it on. But no, it was worse. But I tried to put up with it and ignore it. Dr. Wolfe said it was probably because my brain was reacting to the sounds, and that it should go away soon.

Then after those few moments, we sat there for a long time, about 2 hours, while he ran a whole bunch of other tests on the implant and my ears and whatnot, and we talked about the implant and asked him questions about it. During that time he replaced the magnet with a stronger magnet on my headpiece becuase it kept falling off. Also, during the testing, he said that my nerve response was REALLY good and said that things were looking really good, better than they thought it would. He seemed pretty please with the fact that everything was working out better than expected.

Finally, he was done, and he put my processor and everything together and put it on me, and there it was… finally. No more being hooked up to the machine and listening to tests.. it was just me and the implant as it was meant to be. (Sounds corny, I know, but I hate being hooked up to wires and I was anxious to get to the final stage already.)

I couldn’t really feel the headpiece that was stuck to my head. But the part on my ear was a little heavy and annoying, since I hadn’t worn anything on that ear in so many years. But I could hear sounds. I could hear laughing, clapping, and voices already. Of course, they all sounded the same, but I could tell by the pattern of the sounds what they were. That was a little disappointing, to only hear one sound but in a pattern.

Then, when Dr. Wolfe was telling me and my husband what to do at home to help me get used to it, one of the things was for my husband to read to me from a children’s book and then stop at certain points and I was to finish the sentence. Dr. Wolfe tried it on me, and without looking at him I was actually able to follow along with his voice from the pattern of sounds I was hearing, and finish where he left off. Dr. Wolfe seemed sorta impressed, I guess because he didn’t expect me to do that well with it already. My mom by this point, was crying. And my husband looked a little wide-eyed. Pretty cool, I guess… I think I was just so overwhelmed by it all that I was sorta numb. I probably looked to them like I didn’t give a hoot that it was working, but I did, I was just, too cautious to get too excited.

Anyway, I don’t know if this happens with everyone, but Dr. Wolfe seemed to be so impressed that he went and got Tami and Patti to come and see how well I was already doing with it. They seemed to be majorly impressed. By that point there was a total of 6 people in that room, boy was it CROWDED! So we all talked, I piped in that I caught this word or that word, Tami asked me if I promised I didn’t have my hearing aid on, hehe! That was funny, I don’t know if she was joking or not but if she wasn’t, that made me feel good that I was doing that well.

After all that, we talked to Dr. Wolfe about some final stuff and then left. After we left, and my mom was on her way home, my husband told me in the car that Dr. Wolfe said he thought I was going to do really well with it while I was in the bathroom, but he didn’t want to say that to me to raise my hopes too much. I guess we’ll see.

After that my husband and I went to Red Lobster to celebrate, had a nice dinner even though there was no money for it, lol. Then we came home. At first the afternoon was interesting and fun, because I would recognize certain sounds a little, and that was encouraging. I could hear the beat (but only the beat) of the music in the restaurant and in the car. I could hear the turn signal, the clacking of the keyboard keys on the computer, and the mouse wheel. Except for the mouse wheel, those were all sounds I could hear with my hearing aid, but not that well. At that point, still now, I could hear everything much better with my hearing aid. But it was just the fact that I was hearing anything with that ear. Of course it’s still clicking and clanging and mostly the same sound, but still.

Towards the end of the night, I was tired, cranky, overwhelmed, and highly irritated. At this point, all it was, was static noise, and I was too tired to focus enough to try to figure out sounds. I was mostly cranky and irritated because I kept wanting to turn the volume up, but I couldn’t because it was setting off the tinnititus and dizziness. But if I had it low enough to not do that, I couldn’t hear nearly as much. That got frustrating. Fortunately it was almost time to go to bed so I got to take it off, and I went ahead and took it off 2 hours early so we could watch a movie and I could have a break. That was nice. I sure was tired though! It wore me out beyond belief.

The next day, Friday, was the second mapping session. Much of the same went on except for when he put me in the booth and tested me out to see if I could hear any of the words. I could do some pattern recognition, but since it all sounds the same it was hard to tell which word it was. They re-mapped it again, this time at a more comfortable level that doesnt make my ears ring as bad. Tami told me to start out wearing it with the volume down and then gradually increase it to keep my brain from going into shock and keep the ringing from being so bad.

We left, and that was that. It is much better now, much more tolerable, and I am even starting to make out more and more words and sentences. I can’t hear very well compared to my hearing aid, but I still hear pretty well with it compared to NOTHING! It still sounds like just a lot of static and weird noise most of the time, but when I pay close attention, I am learning and training my brain to associate certain clangs with certain noises. Hopefully I’ll start hearing more than the same clang, at least…

I miss my hearing aid. I’ll get to wear it again once I learn to use the implant, but that will be a while.