More Activation Observations

The first thing that popped into my head when my CI’s went “live” was, “How am I going to describe this?!” It was a sound I’ve never heard before and didn’t seem to fit any of the previous activation descriptions I’d read.

Now that a few days have passed, things are (thankfully) much easier to describe. I spent the first couple of days constantly freezing in place, with a look of intense concentration as I tried to figure out what I was hearing. I’m constantly asking Dave and Paige to identify sounds for me, especially loud noises. They all sound nearly the same, like a loud buzzing. So I’ll ask, and find out that oh, that loud noise is the coffee grinder, or the patio door opening.

I did leave out one important thing that happened on activation day – the word recognition test. Krystine grabbed a little round screen that covered her mouth, and told me she was going to say some words. I was supposed to tell her what I thought I was hearing. I didn’t have high hopes for this because things all sounded weird and buzzy, and I couldn’t understand any conversation without lipreading. Someone speaking a word sounded the same as a door shutting – all just a buzzing sound.

The first word was “ball” and I guessed, I think, “mom”. She dropped the screen and said the word again, which I was able to lipread. The next word was “hotdog”. I hesitated and didn’t say anything…I had a feeling it was “hotdog” because I know that’s a common word used in word recognition tests, and I could tell it was two syllables. Before I said anything though, she dropped the screen and repeated the word. Ah, yes – I would’ve guessed correctly! (But it would’ve been a guess.) The last word was “blueberry”. Again, I was frozen, trying to think of what it sounded like and I didn’t respond. She dropped the screen, repeated the word. I laughed and said, “I was going to say ‘library’!” Not too far off but still obviously not the right word.

When we got home from my appointment, the first thing Dave did was get out the hair clippers and shave my head where each headpiece attaches. We’re going to keep those areas shaved to make it easier for them to connect. You really can’t even tell that it’s shaved – in the picture from my previous post, that was after my hair was shaved.

So now it’s Sunday afternoon and I’ve been living with my CI’s for about 4 days. I was originally worried that the magnets would make my head sore, since they are stronger than usual. They are fine though, no problems at all. Yesterday I started the day wearing the full size Plus battery, which usually gives about 24 hours of listening time. (The Slim batteries are smaller and usually give 12-14 hours.) I wasn’t wearing the Plus batteries originally because they are a little bigger and I didn’t think my ear could handle the extra weight all day long. They are fine as well, though – maybe a little sore but not unbearably so.

My programs must be really strong though – I know I have the microphone light programmed (it flashes green when there’s a loud sound so I know the processor is communicating with the headpiece) and that may draw more power. The batteries don’t last nearly as long as they say they will. I get about 10-11 hours out of the Plus and 5-7 hours from the Slim right now. That might change when my mappings change in the future.

I’ve been jotting little notes in my Advanced Bionics diary, to remind myself of how things sounded in the “early days”. The first night I was sitting at my computer and I noted that I was hearing a scraping sound. I got up to look around and see what it might be. I went downstairs and saw Dave cleaning the litter box…so I heard that from upstairs. Not bad!

That night I noted that I could hear the dog barking (but it was not clear – it was a loud buzzing sound), the phone ringing (faintly, if I was sitting next to it), tapping, and turn signals on the car. Things like water running and the toilet flushing were just loud, staticky noise.

Thursday I really noticed sounds starting to form out of the buzzing. This was the day we moved Eric to his dorm, so I spent a lot of time in the car. No road noise, but when we were quiet I could definitely hear the “whomp, whomp” of tires on the pavement. I was still having trouble with voices, and weirdly enough, it seems harder to lipread strangers than it was when I couldn’t hear at all. When we met Eric’s roommate and his family, I was a little panicked because it was very hard to understand them. I think the buzzing sound (especially from male voices, which are much harder to understand for me) distracts me and makes lipreading harder.

During the day on Thursday, as we got Eric’s room set up, I definitely still had to lipread to understand anything. I wasn’t even sure if I was hearing voices or something else, unless I was looking at the person’s face and saw their lips moving.

When Dave and I got home, we were both tired so we took a nap. I took my CI’s out and put them in their cases – it definitely wouldn’t be comfortable to sleep with them on. When I woke up and put them back in, though, I had a real scare. I could barely hear! Everything was extremely muffled and definitely different from the way I was hearing earlier in the day. I tried not to panic though, and first switched the batteries. No change. I tried going up to the loudest program, which I hadn’t used at all at that point. It was a teeny bit louder but not anything really noticeable. At that point I kind of gave up, assuming that my brain had done all it could with this mapping and I had gone “soft”, ready for a new mapping already. That seemed a little weird, since it was only one day after my activation, but this was all new to me!

Then I decided to take the processors off and look at them. I checked the volume control, which I hadn’t moved at all since I got the CI’s. Krystine had programmed my most comfortable level with the volume at the 12:00 position, and I hadn’t felt the need to change it. I was shocked to see that the volume for both of my CI’s was almost completely turned down! Once I turned them both up to 12:00, I got a level of clarity that I absolutely hadn’t had before. Originally my right CI seemed much quieter than the left, and I’m pretty sure I managed to turn the volume down on that CI even as early as Wednesday night, the night of my activation. Once it was at 12:00 for volume, it was almost louder than my left CI. Although the right ear hears things much more high-pitched, which I really don’t like (treble or high pitched noises make me cringe) it made a big, big difference in hearing speech.

I still don’t know how it happened, but I’m pretty sure it happened when I was trying to arrange the processors in the cases – I was moving them around and it’s easy for the volume control to rub against the side of the case and change position. It could also have happened when I was putting color caps on. So now I make sure I check the volume level before I put my CI’s in!

The TV really was hard to understand and didn’t get clearer until Saturday or so. There’s a lot of “buzzing” when I listen to voices on the TV. If there’s any background music playing, it sometimes sounds just like noise and makes the voices harder to understand. I can usually get the beat of music though, and with captioning I can understand the words. I recognized the song “Hungry Like the Wolf” at the end of a movie on Friday night!

Environmental sounds – microwave beeping, pens tapping on the desk, etc. sound clearer than speech to me at this point. Women’s voices are easier to understand than men’s. Dave’s voice, especially, is hard for me to hear well. It sounds like he’s growling. It’s very raspy, although I can tell it’s him talking and there are some nuances of what I remember his voice sounding like.

Things that were just generic noise a day or two ago are now starting to sound more normal, like the toilet flushing. It no longer sounds like just a roar to me.

I can hear the microwave keypad beeping when I set the time (and I’m standing in front of the microwave) but after I walk away, I can’t hear the beeping when it finishes.

I’ve had a couple moments of hearing things that took me a minute to believe I was hearing…the dogs barking next door, when all our windows were shut, and when Dave was talking on the phone I could hear the voice of the person he was talking to coming through the receiver (when it was up to his ear). Of course, I couldn’t understand what they were saying but I knew I was hearing a voice. I also heard crickets last night!

I can’t hear at all on the phone. We’re part of the Nielson Homescan panel and we’re supposed to call once a week to hear a recording (apparently it gives tips and suggestions for the scanning that we do). I’ve always had Paige or Dave make that call, and I thought it would be good practice for me so I called yesterday. I just heard noises and had no idea what was being said. When Eric called us on Friday, Dave handed me the phone and again, I could tell he was talking but had no idea what he said.

Whenever there’s a loud noise, it sets off a whining sound in my right ear. (Toby is barking right now, which sounds like ‘woof’ to me now BTW, and this is setting off the whine in my ear.) It whines while the noise is loud and then goes away.

Actually, in the morning when I first attach the headpieces, both of them are very loud with a whining buzz type of sound. It’s similar to the way things sounded when I was first activated. It goes away after a minute or so, but it is really loud so I make sure to put my CI’s on the “soft” program first thing in the morning. I change them up to the regular middle program after a few minutes. I haven’t been using the louder program much, usually just when we’re watching TV.

Today I was getting really bad, LOUD tinnitus every couple of minutes in the morning. It sounds like a freight train passing by my head and amplifies what I hear with the CI’s too. I used to get this tinnitus just a couple times a day and today it really ramped up and was getting irritating. It lasted most of the morning, loud bursts of wailing/hurricane/train tinnitus for about 20-30 seconds, then a break for a few minutes, then it would be back again. It’s afternoon now and has nearly stopped, for which I am very thankful!!

So far there haven’t been any painfully loud sounds for me. I went to a few websites yesterday to see how I did with word tests and was pleasantly surprised. I spent a lot of time at http://www.esl-lab.com/ doing various listening exercises. I didn’t expect much from this since I can’t hear at all on the phone. But using headphones, I got between 80% – 100% on these tests. I tried things that were notoriously hard for me, like prices, directions, answering machine messages, travel and numbers.

Then I went to www.manythings.org/pp/ and worked on the minimal pairs. You can click on each (similar sounding) word to hear it being said. Then they say a word and you pick what you heard.

I also listened to a page or two of the DaVinci Code book on tape. I read along with the book as I listened. This was much harder for me to understand; the voice sounded growly and raspy just like Dave’s. Maybe I need to find a book read by a woman!

All in all…wow. I mean, I just sit here and think about how this time last week, I couldn’t hear at all. I told Dave that even if I never heard any better than this, if it all stayed this way, I would be so happy. Having lost it all and then getting it back again, even sounding kind of strange like this does, makes you appreciate being able to hear anything you possibly can. I can’t say enough good things about my CI’s.

I also love being bilateral – each ear hears so differently and things really sound a lot worse with just one CI on. Once I have them both on, it blends together and sounds so much better.

Just sign me

Blissfully Bilateral and Bionic