Wednesday, July 06, 2005

Another followup, and deep thoughts

Another follow-up, and deep thoughts

I went back to Vancouver yesterday for yet another follow-up. It was a long day - first off, Dr Pijl remapped me on the program I had the previous 5 weeks (the one that I didn't really care much for) and then he put that one on my processor along with its matching alternate program which cancels out background noise, THEN added my preferred program and ITS alternate.

Then with all 4 programs I went through a bunch of tests. Single word recognition, simple sentence recognition, sentence recognition with some background noise, sentence recognition with lots of background noise etc.

The single word recognition was amazing - I was getting approximately 70% of a group of 50 words correct for both programs - and Dr Pilj said that most people at my stage of activation usually get only about 15-20% correct. So it was quite a nice surprise. So we went through many lists of 50 words, and then moved on to sentence recognition. This one was interesting. With my non-preferred program I actually got 100% of the sentences correct. With my *preferred* program I got about 97% correct. This could be a fluke, could have been a combination of the sentences being a bit harder, or my getting tired mentally, or maybe my non-preferred program is better in some situations than my preferred (not unheard of.) Recognition with the background noise was much harder, for both programs.

At any rate it was a good set of tests and I was very pleased with the results - and the fact that I keep pushing myself. I'll try to listen to the radio, I'll turn the TV on and do my hair and makeup with it on and try to listen to the news without watching the Closed Captioning. I'm always trying to challenge myself so I think that’s part of why I'm understanding speech as well as I am.

Dr Pijl lent me a book called REBUILT written by Michael Chorost. A fascinating and detailed story of a man's experiences in deciding and ultimately receiving a cochlear implant. I'd recommend it to anyone who would like a deeper insight into both the emotional and the physical (and sometimes comical) aspects of dealing with a CI. While the author sometimes tends to be a little overdramatic in some aspects, he has a wonderful writing style and a very natural way of expression. His book is a very enjoyable read.

There was one specific topic that he discussed that made me think and I would like to elaborate on.

Quite often I get asked, "What is it like to hear with a Cochlear Implant?"

This is a subject that is VERY difficult to quantify. The last time I could hear, I was 9 years old, and that was 24 years ago. Trying to remember the sensation of something that long ago compared to "now" is not easy. Especially when you don't really have anything concrete to compare it with. I don't exactly remember "how it was to hear." I have a "ghost of a memory" of hearing but that’s not the same thing as a real solid memory which you can use to compare then and now.

Michael Chorost gave two examples of comparison. Both of them are brilliant and I will expand upon the second concept.

First of all - hearing with a Cochlear Implant is a matter of trial and error. There are remaps done to improve the speech processing. There are different programs to try and each program may have its own set of strengths and weaknesses. But its not HEARING as a normal hearing person would know it.

Imagine you could see the world in perfect sharp clarity BUT only in black and white. OR you could see the world in color, but it would be slightly out of focus. You'd have to choose which of the two worked best for you and work with them.

But my favorite comparison:

First of all - imagine if you will, a blue sky. You have seen the sky all your life...Then you have an accident and the sky, for 20 years - is grey. Then they tell you that they can give you a sky with color - and from then on the sky will be green. So you are given a green sky. You REMEMBER what a blue sky looked like, but your brain slowly learns to accept the green sky. It becomes normal for you...then you're told you can have different "shades" of green sky. Perhaps on a bright sunny day you want the sky a little darker so it doesn't hurt your eyes much. Or brighter when the sun goes down. You learn to like this green sky - it works for you.

Then a couple weeks later you go see your Doctor and he says "Guess what - we're going to take away the green sky-- and give you a PINK sky!"

Now your brain has already worked at learning to accept that the sky is now green. All of a sudden its PINK... you don't know if you LIKE this pink sky. Your senses rebel, you have to re-learn again to understand what life is like with a pink sky. Once again- you are later given shades of pink....and you realize that maybe the pink sky is preferred, maybe the green sky... or perhaps there are different times you would prefer one over the other....but its STILL NOT BLUE!

That’s what hearing with a CI is like. Its shades of greens, shades of pinks..but its NOT HEARING. Our brain is an amazing organ - it can take stimulus that it receives and learns to use it and adapt to it. Mold it to fit what our version of "reality" is. Sometimes one map may work better in different situations than another....or sometimes you have to block out the background noise, sometimes you have to boost the sensivity... your brain learns to interpret the stimulus as sound - but its still not *HEARING*. My CI has 22 electrodes (right now I only use 17 because of facial nerve feedback). The human cochlea is capable of understanding hundreds of thousands of "channels" of stimulation from the hair cells. I have 22 electrodes - a ghost of what I USED to have, but the brain being what it is, even with those 17 electrodes, it gives the brain an outline from which to use. It adjusts, adapts, improves on, LEARNS. And that’s the stage that I am now. Adapting, learning, growing.

And I'm loving every day of it!


Shel said...

Hi, Dy! :O) ... I just can't begin to express how much it means to me to be able to read your blog and share this with you -- especially since I'm not too far behind you in MY learning experiences with mine! :O) ... THANK YOU for this excerpt from the book -- it's AWESOME and hits the nail right on the head! I'm going to share this with everyone I know and try and find the book to read myself! :O) ... You're doing wonderful and I'm SO excited with you! :O) ... May God continue to bless you! :O) ... Love and Hugs! :O)

Dy said...

You are so welcome! Its so wonderful to be able to share my experience both with friends and family and even strangers. The feedback I have received has just been phenomenal!

George said...

Your blog is fantastic, even if this part is nine years old. I'm interested in, say, the "quality" of what your brain is processing as sounds. And how that improves/d over time with your CI. There's an interesting video on YouTube that actually lets people hear what a person with a CI "hears." And yeah it is electronic sounds of variable quality, with the person having varying success at distinguishing them from each other or distinguishing speech from, say, "background noise." She was, I think, a university student when the video was posted.