Tuesday, December 20, 2005

What an amazing year!

YOW!! It's already mid December and I've not done an update for over two months. Sorry. I've received a few emails with well-planted shoes in my butt telling me to get in gear - so here I am.

First off - in October I had my final follow-up for this year, one more re-map and all my questions answered which was really cool. I'm still using ADRO minus the 4 electrodes that I found offensive because of the higher frequencies (4, 5, 6 and 8). I also received my personal audio cables and WOW what an incredible difference it makes when it comes to hearing music!!! I plugged in my CD player and popped in one of my favorite Randy Travis CD's - which also included a few songs that I had not yet learned (I had found that with music - I have to "learn" the lyrics first (usually by Googling them up online) and memorize them/read them along with the singing in order to learn to appreciate the songs. Once I have them committed to memory, recognition of songs afterwards was a snap. I could walk into a room here a song that I "learned" was playing and recognize it which was really cool) so anyway, I'm listening to some of the songs I know....and one that I DIDN'T know came on and wonder of wonders - I was hearing the words clearly! I was just sitting there - REALLY HEARING a song I never knew, for the first time and understanding it!!!! It’s so different when it’s singing because speech is drawn out and not as crisp/clear as regular talking. I was floored. ANOTHER first!!!

After my October remap, I was asked by Dr Pijl to come back 2 days later and speak to a group of students in the Masters Audiology program with him. I was honored to be asked and the meeting was great. Dr Pijl had a bunch of PowerPoint slides which covered topics ranging from different causes of deafness, how it affects the person physically, how it affects them emotionally, subjects such as isolation, communication challenges, and then how the CI works (it got pretty technical there for a bit but I was fascinated!), what a CI can and can't do, etc. I was asked to give them my personal experiences with my deafness following meningitis, the challenges I faced growing up deaf, and how my life has changed since implantation, including how I felt before/after the surgery, before/after activation etc. This was concluded by watching a LIVE BROADCAST from one of the operating rooms where Dr Westerberg did a CI implantation!!!!! IT WAS WILD!! I mean..it was absolutely amazing to watch the entire implantation from start to the last suture. (and funny too because they weren't able to get audio feed for some reason so when Dr Pijl had to be called down to the OR to test the processor they put a piece of paper in front of the camera that said "Sipke (Dr Pijl) come down to the OR now please" LMAO!!!!) It concluded with another pieced of paper that had "The End" written on it!

It was just another amazing experience -in fact there were a few people there (including Cindy the other audie) who had never seen a live implantation done! I was so honored to be able to witness *EXACTLY* what happens LIVE!!! Wow.... even thinking back on it - it was SO cool! (A funny side note - one of the male students is a bit squeamish and he went pale for a while there when they did the first incisions and he saw the blood! Poor guy lol!)

I might go back for another presentation in February to speak with another group of students and I'm hoping I do - it was such an enjoyable experience.

CI moments still happen on a daily/weekly basis. Anything from hearing somebody in the mall who is standing behind me talking, to understanding the PA system announcing sales specials at SEARS yesterday, to listening to my 2 year old nephew say "That's cool!" and "more please" when I babysat him this weekend. To listening to my 2 month old niece coo and babble when I talk to her (now THAT is an amazing thing to hear!) I am using my personal audio cables with my CD all the time - the clarity is unbelievable. When listening to music through the speakers there's always a little bit of distortion - not so with the cables. In fact - I put on my The Mama's and The Papa's CD the other day and was listening to "Monday Monday" and for the first time I realized that it was the MEN who were singing the song, while the girls echoed it in the background - I never could hear that over the speakers! WOW! For a minute there I had thought there was a ghost in my processor!!!!

Speaking of which - I got my new processor in the mail and the new transmitter because the cable leading from the processor to transmitter had split. Everything's peachy now. I don't go back for another follow-up until April (my one-year follow-up).

I have to say - it’s really amazing when the #1 dream of your LIFE comes true!!! Hearing is the best gift I ever could have received. A thousand Thank You's to Dr Westerberg, Dr Pijl, Cindy Gustin, and the rest of the crew at St. Paul's hospital for making this dream a reality. You've brought happiness to my life that can never be measured.

Merry Christmas everyone! On "It’s a Wonderful Life" there is a line: "Every time a bell rings, an angel earns its wings"

Maybe now that I can HEAR those bells.........

Monday, October 17, 2005

More tweaks, more experiences

Two weeks ago I went back to Vancouver for another "tweak" of my map. If you've been following my progress you know that I've been having some difficulties with the higher-pitched sounds and those corresponding electrodes. First they caused a stimulation bleed-through which manifested itself in an eye twitch (very uncomfortable) so those offending electrodes ( 4, 5,6,7,8) were "switched off" at my initial activation with the hopes we'd find a way to re-add them to my maps at a later date.

In August we discovered that upon activation, those eletrodes no longer caused stimulation. Reasoning behind this is mixed - it could be that I've gotten more used to stimulation, it could be that cushioning proteins have wrapped around the electrodes, effectively nullifying the bleed, it could be a combination of many things - regardless, I no longer experienced the eye twitching so Dr Pijl re-added the missing 5 to the current Map I chose (ADRO), and the experience was NOT what I had expected.

With the 5 electrodes missing - I guess I assumed that once they were added in, there would be even more sound clarity but that definitely wasn't the case. I found that the electrodes - because they amplify the higher pitches/spectrum instead of making speech clearer they made it harder to understand. Voices sounded high pitched, inconsistant (think talking after you've inhaled helium.) I was a bit befuddled and a bit surprised, it could have been that I became so used to NOT having those electrodes stimulated for the 4 months previous that having those readded put everything "out of whack", so to speak.

So when I returned for another follow-up, I had Cindy (the other audie) remove all but electrode 7 (for some reason - don't ask me why, we tried activating only electrode 8 and it caused the eye twitch again!!! Go figure. Fortunatly that didn't happen with electrode 7 so we decided to stick with just that one.)

So now I've had my preferred map PLUS electrode 7 and its been wonderful! I actually like it better than the old map - maybe its just the added boost of that ONE higher pitched sound but it seems to cap everything off. There were some people (like my father or others with very deep voices) who I had trouble understanding with the older map, ad with electrode 7 readded I'm finding understanding their speech is MUCH easier. I have a friend online who I liken to Grizzly Adams - he has an INCREDIBLY deep resonating voice. We'd tried to talk over the phone in August without much success - but we were able to talk with the new tweak so I'm very happy!

Aside from speech being clearer, I'm loving music even more. The other day for the first time I experienced being "moved to tears" by the sound of someone singing. It was Josh Groban singing "Home to Stay." Oh wow what an amazing voice he has!!! I've also been re-discovering many songs I remember hearing back before I went deaf. Buddy Holly, The Beatles, The Statler Brothers, The Mamas and the Papa's, John Denver, even Harry Belafonte to name a few. As wonderful as it is to be able to understand speech, the fact that my CI has brought music back into my life is the silver lining!!!

There was a period when I lived in the US with my ex-husband, that I went three years without any sound ( my hearing aids broke and circumstances prevented me from getting them fixed.) Three years of *total* unbroken silence. I didn't mind.

Now, I find that I don't LIKE the silence anymore. When I have my CI on, and its quiet, I find myself playing music in the background just to have somthing "there" (I have a preference for Hagood Hardy's symphony music.) Its such a change from accepting the silence I lived in before, and now trying to do anything I can to AVOID that silence again. The only time I don't mind it is when I sleep.

I will soon be receiving some new "toys" from Cochlear - some adaptors so that I can use my CI directly with a walkman/CD player or even my computer. That's going to be another fun experience that I'll write about.

On another tangent - I've been experiencing some "design flaws" with my processor. First problem was the digital display which normally shows which program I am using started to malfunction and now there is NO display whatsoever. Then the other day the protective latex
"sheath" which covers the wire bundle between the processor and transmitter split. I've temporarily fixed that with electricians tape, and will be receiving a replacement soon. I hope that they are able to design something sturdier for the future - I've only been using this processor a couple months.

Monday, September 19, 2005

Of meetings and phone calls

I've been busier than a one -legged man at an ass kicking contest lately. Between helping my folks renovate the bathrooms here (bad things always come in threes and we're having to renovate every single bathroom!), volunteering for a multitude of events with my Dad's amateur radio club, and trying to figure out what kind of job I'd like, I've not had much time to update.

Things haven't really changed all that much since my last update. I'm still using my old program simply because I prefer the way things sound and I can't recognize/understand speech as well when I'm hearing the high frequencies. Like I mentioned in my previous entry, I will probably have Dr Pijl add maybe one or two of the high-end electrodes instead of all 5. I don't like the "Pee-Wee Herman" sound it gives everybody.

I've had a few more "firsts" since last updating, however. Last week there was a town meeting here, regarding proposed mega development/overdevelopment changes, and the majority of the town members were trying (without much success unfortunately) to get the town council members to listen to their opinions. I was there helping out, but way at the back of the hall, but I was still able to understand what the council members were saying. I was also able to understand quite a bit of what the individual speakers were saying even though they had their backs to me when they addressed the council. The PA system was much nicer than the one at the bluegrass festival which kind of "washed out" everybody's voices. In fact - my next door neighbor (whom I've heard give speeches before and whom I've talked to several times since getting my CI activated) gave the first speech and I was able to understand about 90% of what he said. Which just reinforces that once I get to know the way somebody speaks, everything just kind of "flows" from that point.

But the BIGGIE was yesterday morning when I got a call from an Aunt and Uncle, who asked my Mom if they could "talk to me." It was one of the most amazing experiences to just be able to really *TALK* to them and understand what they were saying. My uncle has such a super-deep voice and he came through clearly. He said I'm a "motor-mouth" now (like I ever stopped from when I was a child???) but it’s more that as a result of my CI I've developed a measure of confidence in myself and my speech that I never had before. It was just an amazing experience to be able to converse with them, and its giving me even MORE confidence to continue using the phone with others. To date I've spoken on the phone to Dr Pijl, my Mom and Dad, my brother, a couple of my friends from online (some were harder to understand than others but we *tried* at least!), my boyfriend, and now my Aunt and Uncle. Baby steps, but each seems to have a direction and that’s what makes it so amazing. My Uncle said he never stopped believing that one day this would happen (my boyfriend said the same thing - he and I have known each other since 2001.)

I would like to say the same thing - but honestly I can't. I was too *afraid* to hope that hard, on the off-chance that it wouldn't happen. It was easier for me to simply say "we'll see" or "maybe one day" and leave it at that. Let it hang in the hands of Fate - at least that way I wouldn't have been setting myself up for a big disappointment.

Now there is just so much opening up to me. I've kind of been a recluse for so many years, hampered both by my own shyness and my deafness. I'm trying to figure out what kind of occupation/job I would like to do - as I've not been working for a while now. I've held many
jobs, but nothing that really had a direction or the opportunity for any kind of advancement. I'm ready to take steps to change that but the problem I'm facing right now is "what do I want to be when I grow up?"

I've been meeting with a employment counselor who is encouraging me to try to get out and talk to people in various occupations and see if perhaps that’s where I would "fit in." Then once a decision has been made he'd help me take the steps to either get the required training or even college courses required to go into that field. The problem I'm facing right now is that even though I have my CI I know I have limitations, and I really *DON'T KNOW* where I'd fit in the best. I don't have a college degree although I have 4 years towards a communications degree with a background in the sciences. I LOVE administrative type jobs but 99% of them also require me to use the phone all the time and that's still a difficulty and not very realistic. Without a degree its really hard to sit and think of what kind of job I could do that I'd be happy doing for the next 30 years. I'd LOVE to maybe somehow find a way to work with other CI recipients in a way that could help them too. But I don't know...

That's enough bathering for now. Until next time...enjoy the fall sunshine :)

Thursday, August 25, 2005

Another day- another experience

[begin rant]
Ugh it seems spammers have found my blog. Its bad enough that I get spam in my instant messages and spam in my email, but spam ON MY BLOG???? *grrrr*
[end rant]

Now on with the show....

Wow..it seems that not a day goes by that I don't experience yet another 'CI' moment. Today it was understanding my Mom and a friend of hers having a conversation while we were in the car - Mom had her back to me and her friend was standing outside the car so I couldn't see either of them, but I HEARD EVERY WORD!

I went back to see Dr Pijl last Monday and we re-added my elusive 5 electrodes. I was very excited about this - and we were in for a bit of a shock as well. If you have read my previous posts - when my CI was first activated in April we experienced facial nerve stimulation feedback from 5 of my electrodes (#'s 15 - 19) which caused my right eye to twitch every time I heard a sound. Since there was no way to work around the feedback within the protocols of the Freedom study, we opted to simply switch those 5 off until we had more leeway. That was Monday - and imagine our surprise when we switched them ON, without doing any tweaking or manipulation and *there was no longer any feedback!!!*

Dr Pijl isn't sure WHY it just stopped happening on its own - but he suspects it could be that my cochlea itself has something to do with it - as the cochlea puts down some proteins around the implant - I guess it might have a protective or "buffering" effect but at any rate there is absolutly NO feeback among any of the electrodes anymore. So he was able to give me a full re-map (I also found out I'm using ADRO.)

According to the New Jersey University of Medicine , ADRO (short for Adaptive Dynamic Range Optimization) is "designed to automatically adjust sound levels to deliver an ideal balance of clarity and comfort. Unlike other speech processors that lower all sounds when entering a loud environment, ADRO uses incredibly fast signal rates to adjust sound levels across the Nucleus Freedom’s 22 channels individually. The channels representing quiet sounds are enhanced, while the loud sounds are softened, providing the user with a comfortable listening level in changing environments. This allows users to enjoy environments such as theme parks; participate in conversations at busy intersections; and better appreciate music."

More information on ADRO is also available at the COCHLEAR website

NOW came the surprise - even after a week of having the new map - I DON'T LIKE IT!

I am a bit surprised - I expected the tonal range would be more dynamic, more "whole" but I have found that the addition of my missing electrodes - all on the higher frequency end of the electrode array, make everybody sound like they are Pee Wee Herman! Sounds are tinny, whiny, and almost impossible to understand!!! The only circumstances where I have found I prefer the new map is watching television. I can't use it on the phone, and I can't understand regular speech as clearly either.

I'm not sure WHY ... could it be that after 4 months of NOT having those electrodes I've become used to sound "this way" as opposed to with the higher pitched sounds? I'm not sure - I DO know that even with my hearing aids I always preferred the lower sound spectrum - I was able to discern sounds better at lower pitches. I will keep trying with the new map, and seeing if perhaps like some of the others there is a "sweet spot" timeframe where everything will seem to come together (with the other maps it was in the 4 - 5 week range) but I find I'm switching back to my OLD map more and more (thank goodness I asked to have it left on my processor just in case I didn't like the remap!)

I'm thinking that what I might end up doing at my next meeting with Dr Pijl is asking him to just leave 1 or 2 of the electrodes (probably # 15 and 16) and remove the others and see if that doesn't get rid of the "whiny" aspect of voices. With the new remap even men's voices sound uncommonly "feminine" and I don't like it at all.

I can't help but wonder sometimes - since I don't seem to LIKE how the "full spectrum" of sound is - does that mean that MY concept of what the world sounds like is skewed? Or is MY concept right and the new electrodes are stimulating my nerves to a point where its being percieved as unnatural? And if that is the case - just HOW does one decide whether or not one is hearing something "normally" or not? If I turn on my ABBA CD and listen to it with my old (preffered) map and understand it perfectly, does that mean that I AM hearing it correctly compared to a normal hearing person or does it mean that my perspective is skewed BUT it "works for me"? Just WHAT iS "NORMAL" hearing anyway? Its enough to give you a headache!

Monday, August 01, 2005

Ahh the music!

Sorry for not posting an update for over a month - I've just been so busy lately (particularly with helping my parents renovate their bathroom) that I've been lax.

Things have been pretty good for the last month. I went back to Vancouver 2 weeks ago and Dr Pijl put me back through the word and sentence recognition tests (still wonderful results!) and then removed all my maps except for the "main" two that I've
been using over the last month. No "whisper" settings or background noise cancellation this time, just the two main ones so that I can switch back and forth readily between them and see which one I really prefer. Its making comparisons MUCH easier because its kind of hard to make an informed decision when you wear one map for 6 weeks THEN switch to another.

I have my preference already - though when I go back this coming Tuesday I want him to tweak it a bit because I KNOW it can be better. Because I had previously been using the map I don't care for, before going thru a recalibration of my preferred map, I "over estimated" some of the frequencies and as a result the higher frequencies are too loud and often are overemphasized and making some voice recognition more difficult (especially when I'm using the phone.) I'll get him to
lower the high frequencies for me and we are HOPING that this time we can re-add in those 5 elusive electrodes that caused facial nerve bleed-through since we were able to figure out a way to eliminate the eye twitching by moving the "ground" closer to those electrodes. We'll see what happens. From now on we won't be as grounded and will have more freedom to play around with the maps and not have to worry so much about the study protocols since I'll have made my final map decision (for the time being at least.)

I haven't ventured to talk to anybody else on the phone except my family members and my boyfriend....I know I need to try but there's a bit of nervousness as well, the "well what if I CAN'T understand them?" worries. In retrospect I shouldn't worry, after all its only been (almost) 4 months since I had my implant activated and I've been using the phone for the last two! If somebody had told me that I'd be using a phone every day talking to my family/friends within 2 months of activation I'd have thought they had a screw lose. But its a REALITY. It still blows me away!

On Sunday my family and I went down to Coombs to the Bluegrass Festival. Man was that an experience I will NEVER forget!

Last year we went as well - and I only had my hearing aids. I went mainly because it was nice to get out, walk around, enjoy the fresh air, play with my baby nephew, but the music was totally lost on me - it was just a mish mashed jumble of sounds and a lot of them I couldn't even discern (like violins and fiddles).

Well talk about a change!! With my CI it was just AMAZING!! Now I was told beforehand that there would be a chance I wouldn't be able to enjoy/appreciate music with my CI, but I'm pretty positive that part of the reason WHY I do is because I was exposed to so much music before I went deaf. There was ALWAYS music playing in the house. Dad played his guitar and an omni chord. Grandma had her guitar and her organ. My brother played guitar and trumpet and I had been learning the guitar myself and had just started organ lessons with Grandma....so I already had the "appreciation" there, deep inside albeit hibernating. And most of the music I listened to was bluegrass/country.

From the moment we arrived, I just sat in the stands and grinned my fool head off. It was AMAZING! I could hear every instrument. The guitars, the fiddles, the banjos and ukulele's the bass guitars and violins. It was AWESOME!!!

The only difficulty I had was understanding the songs - which was contributed in part by the PA system which seemed to distort the voices (My brother told me not to worry because he said even HE had trouble understanding some of the songs and he has perfect hearing.) I've found that song recognition depends on whether or not I've taught myself the lyrics first. Since people SING much differently than they speak, understanding the words to a song I've never heard before is to me like trying to understand a different language. Words are drawn out, or emphasized differently than normal speech and while I can often get a word "here and there," unless I have the words there to follow along with or I've already memorized them, its very difficult.

I totally fell in love with fiddle playing. One girl who was there, Robyn Jesson was absolutely amazing and I bought her CD and I've been playing it over and over - its just such an amazing sound! I'm going to search out some more fiddle music later this week - I think one of the reasons I like it so much is that with my CI I can hear each specific note - no longer is music just a muddled mishmash of jumbled sounds.

I'll end this here, and make another post in about a week regarding how the follow up went and if we were able to re-add the missing 5 electrodes and how that's affected how things sound.

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!

Monday, July 04, 2005


Tonight was awesome - had an MAJOR CI moment. I was sitting outside on the back patio with my Dad and he was busy doing his net for the Nanaimo Amateur Radio Club - all the folks were checking in, and telling each other how their weekends were going - and I was sitting with Dad and understanding about 90% of what they were saying. It just blew me away! I mean - every time I understand a word, a sentence, I'm amazed that I really UNDERSTAND IT!

I get this silly goofy grin on my face...its just such an amazing thing to really be understanding and comprehending speech well enough to listen to a radio, talk on the phone, watch the TV without closed captioning.

I'm loving it!

Sunday, June 26, 2005


Haven't posted for a while - but things have been wonderful. Last Tuesday I went back to Vancouver and Dr Pijl gave me back the ORIGINAL map I'd had from the beginning. Oh man it was SOOOOOOOOOOOO nice to have it back. He seemed a bit surprised, but what can you do? I like this one better and I'm able to understand speech better with it in *most* (not all) circumstances. Everybody is different though. I do think that the other program worked better for the phone, but this one works better for person-to-person speech. Maybe at the end of the trial I can keep the "main" program of the other map just for using the phone...we'll see what happens.

I'm still using the phone with this one too though and not having too much trouble, Had a convo with Mom (our first on the phone) the other day when she called me to see if I could come help her at a place she cleans for and she told me that after I had hung up she hollared in the kitchen with happiness (and was glad nobody was home there to hear her! *grin* ) It was pretty exciting.

At the end of the month, I'll be going to the Coombs bluegrass festival with my parents and my brother and his family. We went last year and while it was an enjoyable experience it was pretty much lost on me in terms of the music etc. This year should be MUCH different! I can't wait.

A few days ago I was having a nap, and my Dad woke me up and asked me to come outside and sit on the patio with him. So I did...he said "Shhhh...listen!"

and OH MY GOODNESS...I heard THUNDER!! For the first time since having my CI activated!! WOW! Unless it was a SUPER LOUD *boom*, I could never hear thunder with my hearing aids and I could hear all the rumbling, I could tell when the booming got closer, when it faded away...it was WILD!!!! My Dad just sat there grinning at me. When I was a child I used to LOVE to sit outside and listen to the thunder before a storm hit. He remembered that - and the fact that he woke me up to come listen to it with him made it a very special thing to share together.

I go back to Vancouver again next tuesday for a FULL day of testing which should be interesting. I'll also get the other program back for another 2 weeks but I'm not worried about that as I'd learned to use it even if I prefer this one for the time being.

We've not been able to re-add the missing 5 electrodes without stepping outside the protocol for the study, so that is something that we will play around with after the study is over.

Monday, June 06, 2005

Hold the phone!

Ever since that first phone call from Eddie, things have just been amazing. He and I have talked twice more since - both times for over an hour! I also spoke to my audiologist this morning (He called to change my appointment time tommorrow morning.)And he was flabbergasted to be talking to me on the phone. Its ONLY been 2 months since activation and I'm exceeding all expectations (his AND mine) for this implant.

Tommorrow, he says he's going to make some "massive improvements" on my existing program so I'm interested in seeing what's going to be done. Maybe they found a way to re-add in the 5 electrodes that we don't have activated because of the facial nerve bleed-thru(with those electrodes active, I get a facial tic every time they are activated by a sound, so we have them deactivated at the moment.) We'll see what happens. :)

In the meantime I'm just enjoying actually being able to talk on the phone again - Its just blowing me away every day!

Dad got things set up outside so I can sit on the patio, and listen to my CD's out there and it just totally rocks. I've never been so happy in my life :)

Friday, June 03, 2005

Tears in my eyes, and a smile in my heart

Today was just the most amazing day. I came home to see THIS on my kitchen table:

They were from Eddie - somebody very special to me, and the most beautiful card (with cats - he knows how I love them!) On the outside, "Wherever you are.....(inside) Is where I want to be"

He also called to see if I'd gotten them and gotten the answering service (me and Mom were up at Grandma's) and left his cell phone number. So Mom kicked me in the butt and said CALL HIM!!

"But Mom...I won't be able to understand what he says!"

"So I"ll use the portable phone and if you have trouble understanding, I'll interpret!"

so I call him up... he answers... the first couple mins were a bit difficult ...then after about 10 mins, after I'd gotten "used" to his voice... Mom put down the extention and walked away....

And Ed and I talked for another 25 mins on the phone


And I understood him. Amost 95% of what he said. He had to repeat a few things..but I UNDERSTOOD HIM!

My FIRST phone call...in 24 years.. with this CRAPPY program..

and I talked to him!

After we said our goodbyes and hung up I started crying.

Dreams keep coming true!!!

*skips away*

Tuesday, May 17, 2005

Three steps forward, two steps back

Today I had another followup with my audiologist in Vancouver, and it was a dud, with one exception. I had a CI moment while on the shuttle bus I was taking from the ferry to the hospital. When the bus was approaching my stop, the driver said "Okay, St Paul's is next!" and I was sitting at the back of the bus and I was able to understand him!!!

The sucky part:

Now because I'm part of a clinical trial - they have to follow a set protocol for every individual in order to properly document preferences for different Maps (programs for the processors), and most specifically the old Maps used on current CI's versus the new ones for the Cochlear Freedom and the faster speeds regarding how the implant behaves.

Soooooooooooo today they took the program I've been using (the one I showed a preference for out of the original 3 they gave me) and removed it, and gave me 3 entirely new Maps

And letmetellyasomething - THEY SUCK!!!

I told them so today when I got the new maps and Dr Pijil just laughed. He said he felt SOOO bad to have to do this but since its part of the protocol for the study he has to.

I won't even use Programs 1 or 3 - I can't even make out anything with them.

And though with Program 2 things are "loud enough", everything sounds so dull and resonant - like I'm hearing things through a tunnel, and I can't make out speech like with my preferred one.

I'm stuck with these for 3 weeks then I go back for another followup and hopefully I'll get MY MAP back!

Of course I understand, but I told 'em I reserve the right not to like it LOL


I really can't complain - I got the surgery AND the new CI for free - all I have to pay for is my travel to/from vancouver every 2-3 weeks so its well worth it. Its just a bit frustrating becauseI *KNOW* how well things CAN SOUND. And right now I can't get that.

I pray the next 3 weeks go by fast!

Edit: Hope springs eternal. In an effort to convince myself that "It can't really be that bad" I put my favorite ABBA CD on.

It sounded like frogs singing

*sigh* man its gonna be a long 3 weeks

Thursday, May 05, 2005

First follow-up in Vancouver

I had my first follow-up today. It was pretty interesting. We were able to find a way to compensate for the facial nerve stimulation in 2 of the electrodes that were causing it by keeping the intensity down, but upping the gain to compensate. Seems to be working.

They gave me 4 different offshoots of the main program (the one of the three I preferred) for different situations. For example - Dr Pijl took me outside the hospital onto Burrard ave - a NOISY place, and with "program 1a" running it was almost too loud. He then activated Program 1c and in 20 seconds the entire background noise/traffic totally disappeared and all I could hear was his voice. I just totally rocked!!

I had asked him what the DB threshold for my CI was and after we did the programming and re-map (took about an hour and a half) he did an audiometry test to see what was happening.

Pre-ci my hearing loss was 120 - 130 db.

I am now hearing (with the CI) 20 db. Anything over 20 db is termed a "hearing loss"....I'm hearing at NORMAL HEARING LEVELS!!!!!!!!!

I'm completely blown away. So is he. He said he's never seen anybody so far be able to sense sounds that soft. I'm just still in a bit of a daze - each day things just get better and better. Its ONLY been one month, but I've held a conversation with my Mom in the kitchen and me in the living room without a problem!

Its far beyond my wildest dreams. I have to pinch myself to see if its "really real".

And they say it will just keep getting better. Right now Mom's the only one I can really fully understand, but I'm picking up words here and there. I had the radio on the other day and I was able to pick up a lot of two and three-syllable words with ease. I'm LOVING music and relearning all my old favorite songs.

I'll add more soon - right now I'm just kinda overwhelmed again...Its like winning the lottery twice in a row!

Monday, April 25, 2005

Each day brings a new sound

Its been a few days since my last posting. Lots has been happening. Dad hung a gorgeous wind chime just outside my door on a tree branch. It was a gift from a friend of mine last summer, and I was amazed at how beautiful it sounded. My CI could pick up every different ringing tone..I keep going back to it to make it ring!! Lol. Oh for a windy day!

I've also gone down to the beach...the sound of the waves was just as I had remembered it. So soothing, crisp and clear. I just continue to be amazed at what I can pick up with this thing. Like the other day I was sitting down in my room and was hearing these "snap/crackle/creak" sounds and couldn't figure out what they were....eventually I was able to discern that the sounds were
actually coming from above me - when my parents walk across the kitchen floor, the floor creaks! I never had any idea it did that.

I went to a birthday dinner party on Friday for my sister-in-law and had a great time. Although it was a bit difficult following all the conversations (there were 17 of us at the restaurant) I think I did pretty damn good! The only problem is that sounds seem to come at the same intensity initially. I'm learning to "tune out" some sounds but others are harder. When everybody is talking at the same time to different people around the table its very confusing and I find it hard to focus on one particular voice. I'm sure that will come with time.

After the party we went to a bonfire. Oh man the sounds of the wood sparking and crackling was just awesome. I was totally mesmerized by it. It used to be that just the sight of something could catch my attention and soothe me, but I'm finding that some sounds can do that too (the waves on the beach were the same.)

I'm getting more and more "words" out of the jumbles I hear. I'm becoming much more attuned to my mom's voice and quite often can pick out words and even sentences of what she says to other people when I'm not looking at her. I'm also picking out words/phrases on the TV when the closed captioning isn't even on and its just voice in the background (like during advertisements). There will be this "blah blah blah" jumble, and then some words will pop out clear as day. Sometimes I find myself second guessing - did I REALLY "hear" that? But yes its true that the words are coming through and I'm understanding them. Its just amazing.

I'm pleased with the progress so far. I dont use Program 3 on my CI at all - its only marginally better than my hearing aid was. Program 2 is *louder* but I'm learning quick that loudness does NOT necessarily translate into clarity. Its Program 1 that is giving me the clarity of sound and the ability to understand words.

I go back to Vancouver on May 6 for my first follow up and I'll make a post when I get back, if not before :)

Tuesday, April 19, 2005

Its a noisy world out there!

I can't believe its already been 6 days since I got my CI activated. Everything is going past me in a whirlwind. New sounds..each day..hell sometime each HOUR.

Last night I hooked my Dad's speakers up to my computer and tried out voice chatting with some friends on Yahoo....and WOW! One of my best friends was totally blown away when I was actually able to understand a little what he said when he spoke slowly and clearly! I can't yet follow speech at a regular pace, but hey - this is a start!

Tonight I was walking past the TV at 11pm and the news came on. The closed captioning wasn't switched on, but I just happened to stop and watch it for a couple minutes, and was *totally* able to understand every word the announcer said!!! True- I still have to rely on lipreading to a point, but understanding what people are saying on the TV without the CC on is wonderful!!!!!

I'm finding that I'm only getting about 2 days out of my batteries with my preferred program. I have three to choose from (though being that I'm in a clinical trial, they won't tell me just WHAT each program is until later so that I can make a choice without bias.) I'm finding that I'm preferring Program 1 to the others. With Program 1 the sounds seem "crisper" and clearer. I have a greater sense of the different tonal ranges with voices and other sounds - like music. Program 2 is good too but sounds seem to be a bit muted, almost as if they are being echoed through a tunnel. I don't like Program 3 at all. Sounds are not clear, and everything seems to run together.

I will have to wait till mid-May to get re-mapped and have everything turned up a bit. I'm noticing a slight eye-twitch with a few sounds when I use Program 1 so that will have to be adjusted. I'm hoping that they will be able to figure out how to totally eliminate the twitching and re-add the 5 electrodes that were removed.

I was singing along with some songs again tonight - singing used to be such an important part of my life when I could still hear. Its just so wonderful to be able to embrace that part of life again. I was told that I might not like how music sounded, and/or it might take several months before I understood or appreicated it, but it seems to be coming back at me just like flipping on a light switch. I just LOVE MUSIC. It fills me with such joy to be able to play a song and understand it!

So I was playing some songs from the Oh Brother, Where Art Thou soundtrack (I'm finding that I like listening to bluegrass more than most other musics because the vocals are not overwhelmed by the music as is a common thing with a lot of other styles.) I was singing along with "I am weary, let me rest." My Dad heard me playing the music and came into my room and heard me singing along....ran upstairs and grabbed my Mom and dragged her down to my room and they were both listening to me sing....and Dad said I was actually singing IN HARMONY with the music!!!!!!! I didn't even know it, I used to sing very monotone, naturally being that I couldn't hear my voice - but both of them said that I was carrying the tune almost perfectly and I wasn't even trying! Blew me away (and them too!)

I'm going to see about getting voice/vocal lessons. If I were in Vancouver, Dr Pijl said he'd probably schedule me to have speech therapy, so we suggested voice lessons and he said that was a great idea. So I'm going to talk to a friend I have who has a daughter who sings and find out who her voice coach was and see if they'd be willing to take me on for an hour a week or so.

I'm amazed at what a noisy world it is. I'm also beginning to find the first sounds that annoy me. Repetitions seem to distract me - like my clock ticking (had to move it farther away from my desk.) I'm starting to be able to tune out some sounds - at first the fans on my computer seemed to be abnormally loud but now they're fine, though I can still hear them.

I came across a poem by Shel Silverstein (one of my favorite poets) that made me stop and think, because I could see it applying to me in the situation I am in right now. I told it to my Mom and she said it gave her shivers down her back...because she can see exactly what I mean regarding whats happening in my life right now.

The Bridge

This bridge will only take you halfway there
To those mysterious lands you long to see
Through gypsy camps and swirling Arab fairs
And moonlit woods where unicorns run free.
So come and walk awhile with me and share
the twisting trails and wonderous worlds I've known.
But this bridge will only take you halfway there -
The last few steps you'll have to take alone.

I think it fits - my CI will only take me so far in life, unless I'm willing to take the steps to work with it, and keep pushing my limits. It will only get better from here on - I know it :)

Sunday, April 17, 2005

The Antiseptic Baby

Its been a intermittent rainy/sunny Sunday. I've had the CI now for 5 days and each day brings somethign new and wonderful. Yesterday I spent the afternoon down at the Legion with some friends, and had a great time. They are a fantastic group of people, and there were several that I had always had a very hard time lipreading. Some I could not lipread at ALL, and I was understanding almost everybody! There were quite a few teary eyes too when friends realized I was hearing and understanding them.

On the way to the Legion (I decided to walk- its only a mile away) it was just wonderful. I could hear dogs barking, birds chirping, I could tell way beforehand if a vehicle was coming up behind me on the street.

I find when I'm IN a vehicle its more difficult - the sound of the engine itself drowns out other sounds, but I'm sure as I learn to "listen over" some sounds, I'll be able to filter it out with time.

I heard the rain on the hood of the truck the other day. It was such a wonderful sound. I find myself stopping beside my Mom's fish tank a lot - she has a raised water filter that runs back into the tank, and the sound of the running water is just beautiful. I like to just stand there and listen to it. My hearing aids could never pick up that sound, water was just a blurry rushing noise, never something crisp and clear.

I'm realizing what a noisy place the world is. I probably knew that back when I could hear, but being a child, one doesn't really learn to appreciate what one hears. We had Evan over this afternoon while my brother worked on my car, and he'd laugh and giggle, and babble away and it was just music to be able to hear his voice. I'm so thankful for the chance that has been given to me to experience this again.

I'm finding that often voices are still a jumble of sounds....and then, out of the blue a word or 2 or 3 will come through clearly. When those words come through, sometimes I do a double-take. Did I REALLY hear that? I'm not just imagining it?

I've been going through my movie collection a bit at a time - just hearing everything from a new perspective. I watched Aladdin and Sister Act II and the singing is just beautiful. I had forgotten
Robin William's voice.

I want to rent some of my old favorite musicals - My Fair Lady, The Sound of Music, Chicago, A Chorus Line. I always LOVED the musicals - even when I couldn't hear them. Music played such an important part of my life when I was younger. There was always music in the house. Dad would play his guitar all the time, and when we went camping he always brought it with. I have some of the most wonderful memories of the family, relatives, friends sitting around a campfire singing songs like "Do Lord," "My Grandfather's Clock," "Michael Row Your Boat Ashore," and "My Bonnie Lies Over the Ocean." and many more.

When I was 3 years old, we were camping in Bowser and the family who was camping next to us had a daughter who was 9 or 10. She had a tape recorder with some childrens songs on it, and she taught me a song called "The Antiseptic Baby". Its quite the tongue twister and I learned it quickly - and me and my Dad would be asked to sing it together during the campfire sing-a-long's. At my Paternal Grandfather's funeral, 2 years ago, everybody started bringing out the guitars and singing - it was one of Grandpa Guy's favorite things - and me and Dad sang that song together.It had been the first time in about 10 years that we'd done that.

THE Antiseptic Baby and the Prophylactic Pup
Were playing in the garden when a Bunny gamboled up;
They looked upon the creature with a loathing undisguised,
It wasn't disinfected and it wasn't sterilized.

So they took the pretty creature, and without an if-you-please,
They popped him in a boiler of a thousand-odd degrees;
They froze it in a freezer that was cold as banished hope
And washed it in permanganate with carbolated soap.

In sulphurated hydrogen they dipped its wiggly ears;
They trimmed its frizzy whiskers with a pair of hard-boiled shears;
They donned their rubber mittens and they took him by the hand
And welcomed him a member of the Fumigated Band.

There's not a Micrococcus in the garden where they play,
And they bathe in pure iodoform a dozen times a day;
They imbibe their daily rations from a hygienic cup—
The Bunny and the Baby and the Prophylactic Pup.

Saturday, April 16, 2005

The perspective of others

This was written in the blog of a dear friend of mine - just after I posted my "There Is No Sunshine Today" letter on a bulletin board I participate in with her. I've known Brenda for 9 years now, and she's an amazing lady. (Her blog - Brenda Bradshaw is in my blog links on the right)

I keep going back to read her entry in her blog because it just is so eloquent. It makes me happy, and it brings a tear to my eyes each time I revisit it. I never dreamed I'd impact the lives of others with my experiences like she describes.


When Words Fail to come to a writer's fingertips?

There's a sense of panic, of course. I mean, this is what I DO, after all. It's not that the words aren't there. It's just that the words are suddenly, so incredibly...insignificant. I cannot do them justice. I cannot, for once, capture the moment, and it leaves me staring at a screen, attempting to convey these thoughts that are running amok in my head.

No, it's not the drugs talking this time. And no, I'm not exceedingly tired. And believe it or not, I'm not even rambling.

I have a dear, DEAR friend named Dyniece. I originally met her on mIRC several years ago. She was married to this incredible jerk. She deserved so much better. Although she was in Oklahoma at the time, I was in Maryland. She left the Jerk (YAY!) and moved back to Canada (Not a yay.) Dyniece is deaf.

She used to hear as a child, but then a high fever and a wicked disease stripped her of that sense that we all take for granted. For 25 years, she has lived in silence. I can't begin to imagine what it had to be like for her as a child. I have a 10 year old daughter, and I try to think of what would happen, how could Carly feel, if she got really sick and suddenly, she can see my mouth moving but there are no words making it to her ears. Turning on her radio and hearing nothing. Checking the television and being greeted by silence. I wonder how Carly would deal with it, but more worrisome...how would *I* deal with it as her mother. My heart would break a billion times over, I'm sure. So you learn to sign and you learn to read lips, but that never-ending silence. I can't wrap my brain around that idea. My life is chaos, screaming kids and loud tvs and CDs and radios and blaring music in the van. There is NEVER silence here. What is it to walk around with nothing, just...nothing...being heard?

Because Dy went deaf as a child, rather than being born deaf, she was one of the few adults eligible for a Cocklear Implant. Very few adults are eligible because it's like taking one of us and setting us down in the middle of China without a clue. Those born deaf don't know what a hard C sound is. They don't know a cough from a word. It's like totally relearning a language, and just like with a 2nd language, it's best learned young. Dy wore a hearing aid for years, and apparently it stimulated just enough to keep things active in there.

Two months ago, she had the surgery for the implant. Tuesday, she had the implant turned on. This morning, my husband woke me up as usual. (I am wicked bad to wake up.) He said: Brenda, Neecy (that's what I call her) posted.

Well, now I'm awake. We've been all waiting anxiously to see how it went. I wanted to be there SO MUCH to see her face. And of course, we all had that secret fear: What would we do, what would we say, if it didn't work at all?

He said: She has a post called "There is no sunshine today". And like that, I was out of bed, my heart broken as I raced to the computer, saying "Noooooo, no no no" over and over again. He said: "She hears everything."

And I stopped and I stared and I cried. And I read her post and I'm crying still.

Neecy heard. She heard her mother gasp. In just a few days, she's hearing more than most hear after five years of getting the implant. Can you imagine? I can't. I simply...can't. They tested and tested. She can hear words clearly. She can hear the radio, the words over a telephone. (Those are the hardest for implant patients because the frequencies are different.) She went outside and heard birds. Those gawdawful things that annoy the piss out of me every morning right outside my window while I'm sleeping. She found the joy in that. I think, "What if I couldn't hear those birds?" Well, of course, I can't even comprehend the idea because I've always heard. She found the beauty of it where I had lost it. She picked up a bag of chips and giggled at the crinkling sound of the package.

Can you IMAGINE?! A bag of chips. An insignificant bag of CHIPS made my dear friend's face light up. I have to record Cooper (my 3 yr old) during a case of those deep baby giggles. I want her to hear that. It's my personal favorite sound in all the world, and I want her to know what it's like.

I want her to own a CD and build a collection. I want her to know what songs sound like again. She was in the doctor's office and they played "I'll Fly Away" and "Amazing Grace" and she said she cried like a baby. The last time I heard "I'll Fly Away" was at my grandmother's funeral. And here are the tears again, but the sorrow has been replaced with a joy that has no edges, a joy so all encompassing for my friend that I cannot honor her experience with my talent. I cannot get ahold of this idea strongly enough to make this post worthy of what it is.

It's a tribute to Dyniece. Neecy...no longer defined as one of the deaf. Neecy who can hear. Neecy who gets giggles over a bag of chips and Neecy who reminded me that there is joy in the chirps of the birds. That traffic and honking and shouting are a JOY and should be cherished.

She says she has a hard time with accents. Guess what? I don't care. This Texas voice is going to call her, and I'm going to be crying and telling her how much I love her, Texas accent not withstanding. She can hear, CAN HEAR, how I say nekkid instead of naked. She can hear my kids hollaring in the background. She can hear me say "Thank you, Neecy, for sharing this incredible moment in your life with me." For once she won't have to read my words, she will hear them. And I pray I do not fail at that moment. I hope I can convey to her what I'm feeling, and not just blubber like a baby in her ear. But I know her well, and I know that if I do end up snottin' and sobbin' at her, she will laugh, simply happy to hear me cry.

Friday, April 15, 2005

There is no sunshine today

I wrote this out last night, but forgot to post it here (just posted it to a message board for CI users then went to sleep)

I thought I'd add a copy here.

I'll extend on it later with more personal viewpoints but this is the gist of it :)

Love you all


Subject line will be explained as you read :)

LONG ASSED POST ALERT! You've been warned!

Soooooooooo We got home this evening, a full day earlier than expected. (By the way this is the first time typing on my keyboard while wearing my CI and its a loud-assed kb!)


So we get there at 9am Tuesday morning, and Dr Pijl is waiting for us. First he explains the functions of the CI itself (how to turn it on/off how to insert the batteries, how to switch between the different programs - it can hold 4 - and stuff like that)

Then he puts it on me, hooked up to his computer - no sound yet as its not running a program yet...he loads Program 1 and says he's going to give me a tone....tell him if I can hear it

I almost fall outta my f*ckin chair!! (pardon the language)

I mean...it was like 'HOLY **** WHAT WAS THAT Huh??"

(Hey Mikey - she likes it!)

He looked at me and grinned - Mom's white faced. She said the look of shock on my face was unbelievable (she got a pic and I'll scan it when she gets the film developed). We go through all the electrodes (22) and then he turns the full program on.

the only word was WOW...... unbelievable. He started talking to me, and let me tell you, Dr Pijl is VERY VERY difficult to lipread - at best I usualy understood 30% of what he was saying - the rest is just pieced together from experience with regards to word placement and sentence structure.


every dang word

I still had to lipread but the sound of his voice came through so *clearly* that understanding him was easy.

The rest of the morning was kind of a blur, we went through the first program again, with him asking me about loudness and comfort. Taking a break for 5 min to walk down the hallway (I could hear people talking - though not exactly understand them, I could hear their vocal tones - ... down the hallway - before approaching the secretary's office I could hear her typing...thru the
door, more people talking.... shoes clicking on the floor...a door opening and closing.... a wheelchair going over the tiles.... we went outside.... WOW... vehicles passing, a seagull screaming on the roof.... overwhelming!.

Back inside he adds the second program (I use 3 programs, which are the original System 3 program, a High-Res program, and the brand new one thats specific to the trials for the Nucleus System 4

unit only. I DO NOT know which is which, just programs 1 2 and 3 so that I can give a preference free from any influence) The second program sounds a bit different...sounds are more muted, more resonant. We notice that I started to get an eye-twitch with the second program so we ran thru each of the 22 electrodes and discovered that there were 5 that were causing the problem.

Dr Pijl thinks that the bones surrounding my cochlea may not be completely solid, and may be allowing a bit of the electrical pulses to bleed over to the facial nerve, which has happened to people in the past. So he turns off those 5 electrodes, they can be re-added later in the program when they find a way to work around the problem, but for now I have 17 working electrodes.

Its hard to put everything together....but I was hearing things I'd never heard (or remembered hearing) before. Sounds were clear. Crisp. Individual. Voices were resonant, pleasant sounding.

We broke for lunch - Mom and I went to the news stand and she wanted a bag of chips and when she picked them up I was like 'WOW!! That sounds neat!" because I could hear the crinkling of the celophane. With my hearing aid it would just sound like a high pitched rustle - but the sound I was hearing was 1000x different.

Then he put me through some tests - where he would play different beeps and I'd have to count them and tell him how many I heard. Wasn't very difficult - he told me that most of people can NOT differentiate between the tones on the first day. I was getting almost every one right.

We began to suspect that perhaps the fact that I wore hearing aids for 23 years kept my auditory nerve stimulated to the point that it was kept in a state of readyness and once the CI activated it was just a matter of understanding and for some reason I was getting clarity and distinguishing the different tones without a problem. Dr Pijl was pretty amazed.

We did that for both programs and that took most of the day, plus trying to work around the 5 problem electrodes and see if there was a way to re-add them back without causing the eye tick but we couldn't because at a level where the eye stopped twitching, the sounds were too soft for me to really understand. We kept increasing the sound for both programs as after about an hour,

a level which initially would be almost TOO intense would seem too soft, as I learned to adjust to the stimulation. Dr Pijl got a kick out of how I kept asking him if we could turn them up more *grin*

So at around 3pm we called it a day, and went back to the hotel. I had a nap, then Mom and I watched some TV - and I found out that during some commercials that weren't closed captioned, I was understanding what the actors were saying!

Mom and I just spent the evening going over what had happened and talking and playing cards. I loved how they sounded when shuffled.

Wednesday morning we worked on the third program for most of the morning then equalizing all the elctrodes and optimizing the programs, more counting, telling which of 5 tones were softer or louder, making it all balanced out, more breaks to listen to this and that outside, etc

Then after lunch, we meet with Cindy, the audiologist. She's a sweetheart - she's the one who did all my preliminary testing in November and December prior to my being approved for my CI.

So... she says we are going to try some tests...word recognition etc just to see if the CI is picking things up correctly.

She gives me a list with words on it....three words to a line. She wants me to pick out which word she is saying without lipreading or looking at her face...so we start... I get one right...then another...then another... 3/4 of the way down the page, she takes the paper out of my hand "well THAT'S too easy for you!"

So we move onto a different test...she wants me to follow along while she reads a sentence and pick out 1 of 2 different words for example "Joe went to see/saw a cat" (ignore proper english)She'd say one of the 2 words and I'd have to tell if she said see or saw

3/4 of the way down THAT list..."too easy"...

So she hands me another paper with groups of 4 sentences.

Now she is going to read a sentence and I have to pick out what it was out of the 4 listed in each group on the page.

So she says the first and I'm reading the paper...easy to discern because I can put the sound together with what I was reading "The Goldfish is in the bowl".

She gets ready to say the 2nd sentence...and on a whim, I just turn my head to the left and DON'T look at the paper...I closed my eyes...and she said the sentence. Without opening my eyes I repeated what I thought I heard.

Then looked at the paper...and I was right.

"There is no sunshine today"

That was the first full sentence I understood in 24 years.

24 years - and I understood it completely.

And we all cried. Oh man.... thats when it really hit home.

So we went through the rest of the list...without me reading it...and I got them all right.

Then she went on to "categorical sentences" like what you'd hear in the morning

"how are you today?"
"Would you like eggs for breakfast?"
"lets have a cup of coffee"
"good morning"
"did you sleep well?"

And I got all but the "lets" in "lets have a cup of coffee"

mindblowing doesn't BEGIN to describe how I felt. I was crying. Mom was crying, Cindy was crying...it was just so dang emotional.

Then she starts explaining how I'll continue to increase my ability to understand language, how with some people it will probably be very easy to understand, for others I may always have to lipread them a little. (lisps, accets etc play a part too) She then asked me if I wanted to try listening on the phone to her answering machine message and see if I could understand it...so

she calls her office....and I get out "Helo, You have reached Cindy's answering service"....then some more words, it was a bit garbled after that..... then "If you would like to leave a message I'll get back to you as soon as possible. Thanks for calling".

Again.. more astonishment. She went back to her office and had me call her...and we had a converstation on the phone!!!!

Now mind you - she's a audiologist. She knows how to enunciate properly to make it easier for hard of hearing people to understand her, and while I could not understand every word, I was able to understand most. She recited days of the week on the phone and asked me to repeat them and I got all correct except Tuesday and Thursday - the two T words were difficult to separate.

Cindy said there are people who have had their CI'S for 6 months who couldn't do what I did on the 2nd day. Mindblowing huh? That was the end of day 2 - what a way to end it on a high note!!!!

Dr Pijl had said he thought that we'd probably be able to leave thursday afternoon because I was just breezing through all the tests without a problem.

Thursday morning I talk to the surgeon who did the implant itself, Dr Westerberg. He's even harder to lipread than Dr Pijl as he mumbles - but I understood *EVERY SINGLE WORD HE SAID!*

That morning we fine- tuned the programs some more, did some computer analyzing to test the functioning of each electrode and chart it etc - the testing is lengthy because I have to listen for different tones, compare them, listen to cadences etc...its kind of boring lol but serves a purpose.

I'd already told Dr Pijl that I was favoring program #1 and he seems happy with that. The sound with this program is simply clearer, crisper, more realistic, and voices are easier to understand.

We started doign some tests that normally are'nt done until the follow ups, but because I was already understanding full sentences spoken by Cindy and stuff like that, he said we might as well go ahead with some of the stuff - just more testing regaring the different programs and how they compared to each other.

And then it was time to go home. I go back in 3 weeks, and then every 2 weeks thereafter for 1/2 a day and once a month for a full day. Next time I go back I will pick which of the 3 programs I like best (I already know it will be #1) then what they will do is then add 4 programs that are variations

of #1 to use in different settings (where sounds are super soft and I want more clarity, in a public setting where I want to eliminate backrgound noise more, 1 on 1 conversations etc)

We got home at 7pm tonight and its just been the most amazing experience of my life, and it didn't stop there!

i was told by Dr Pijl that when it came to music, music appreciation was NOT a universal appreciation among CI recipents. He said some learn to understand it over time, some never do, some simply don't like the sound at all as the programs are more geared towards understanding SPEECH than understanding music and/or singing.

But the stubborn mule in me doesn't listen very well.

So we get home and the first thing I ask my Dad to do, is put in a CD soundtrack from the movie "Oh Brother, Where Art Thou?" and play "I'll Fly Away" just to see if I could understand it. So he turns it on....and there the words are...clear...and I begin singing along with the song.

Mom and Dad started crying.

So...its been an *amazingly* successful switch-on to say the least. And they tell me it will just continue to get better and better. They say that even after 5 years, some CI recipents are STILL learning and finding new things and understanding what they hear better, so I have room for a LOT more....and I can't wait!!!!

This might have jumped around a bit - if you have any questions just ask and I'll elaborate. I'm sure I missed some points and I'll remember them in the morning, its just that my mind is still a jumble of all these experiences. I tried to put it down as closely as I remembered...

Its sure nice to hear again

Sunday, April 10, 2005

And so it begins

"We are Borg. Resistance is futile. Your life, as you have known it is over."


This is gonna be a long-assed post, so you might want to make sure you have a cuppa handy and maybe a few nibbles *grin*

First things first - for those who don't know me, I'm a 33 year old deaf Canadian woman. I have postlingual sensorineural deafness stemming from a bout of meningococcal meningitis when I was 9 years old. In laymans terms, this means that the sensory nerves in the cochlea are killed or damaged (in my case from fever.) When these cells die, contact with the hearing nerve fibers is broken and the perception of sound is lost. Since the sensory hair cells of the auditory system are not naturally replaced or repaired, the damage is permanent.

Its been 24 years since I went deaf. I have no real recollection of what happened. One moment I was happily sitting in a chair reading my favorite book (a collection of fairy tales) the next I woke up 3 weeks later from a coma, totally deaf.

Saying this was a bit of a shock is like saying the ocean is a bit wet....

But I adapted...I learned to lipread...learned sign language, went to school, graduated, even went to college for a while

But during all this my fondest wish was to hear again.

Back in the early 1980's, I visited St Paul's Hospital to investigate receiving a Cochlear Implant but at the time it just wasn't a possibility.

Then January 2004, I again started exploring the possibility of being implanted. I knew that technology had improved by leaps and bounds in almost 25 years, and I'd never stopped wishing that I could hear (even to the most remote degree) again. November, 2004 I was contacted by St Paul's again to undergo initial testing. Everything seemed peachy - then in December, Dr Pijl (head of the CI program at St Paul's) contacted me to see if I'd be willing to participate in the clinical trials for the new Cochlear Nucleus System 4. BOY HOWDY, was I ever!!!

So more testing followed plus a MRI which showed my cochlea was healthy and not occified, or turned to bone (a possible side effect that happens in some people).

My implantation was scheduled for January 24th. I'll follow this with an email I sent out to friends and family:


The surgery went off without a hitch!!!!! It couldn’t have been better. Coming out of anesthesia I was only nauseous for about 20 mins and then everything was awesome - in fact I was doing so well they let me go back to the hotel after my 2 hours of observation post surgery!!! It was just fantastic to be able to spend the night with my Mom at the hotel instead of in the hospital

We came home last night, and other than some aches and pains (general anesthesia always leaves my body feeling like itts been
ran thru a washer wringer twice then ran over by a dump truck for a good measure) I’m doing great. I’m hardly in ANY pain where the surgery was!! In fact since monday I’ve only taken two Tylenol #3’s, its actually not been that bad at ALL!!! I’ve been having a few dizzy spells but my surgeon said to expect those for a week or 2.

Now I’m just taking things day by day while I heal. I go see my ear/nose/throat dr next week to get the stitches removed, then in 4-6 weeks I go back to vancouver for a week and do the switch on. Gotta win the lottery between now and then LOL as I’ll have to stay in a hotel for a week while that happens but it’ll all work out one way or another. I’m soooooooooooo psyched!!

regardless I will be sending regular updates on how it all comes together!

I'm really lucky how well it all was - my mom got to talking with a family whose daughter had her implant done right after mine, and we ran into them the next day at the hotel restaurant and they told me she hadn't been doing very well - reacted violently to the anesthesia and had spent the whole night vomiting and all that. Poor girl.

An update from February 9th:

Time for a post surgery update.

Everything's been going very well. I've pretty much just been taking it easy and letting things do day to day. I experienced some bad dizzy spells for the first few days following the surgery but other than that everything was fine.

Last Tuesday I had my first post-surgery checkup with my ear/nose/throat Dr and he said that everything looked peachy keen. I was healing nicely and there was no sign of a problem or infection.


On Saturday afternoon I noticed a grape-sized lump in my neck, about 6 inches down from my incision. I went to the drop-in clinic on Sunday and the Dr who checked me out suspected an inflamed lymph node. My mom had called Dr Pijl at St Paul's Hospital on Saturday to let him know - he had requested that we keep him apraised about *ANY* side effects. Apparently there have been more than a few people who have been having some pretty bad side effects such as vomiting and continued dizzyness, and horrendous tinnitus.

Dr Pijl called Monday morning at 8am and asked if we would please come over to Vancouver (I'm on Vancouver Island) that day. So my mom and I hopped on the fast cat and went over to St Paul's hospital. I was quickly escorted in to see the specialist who had been waiting for me, and was given an examination, which included the joyous experience of having an endoscope shoved up my nose and down my throat (sarcasm evident). She told me that there was no swelling, no sign of infection or anything and she also suspected that it was a lymph node problem. As this is the first time they have ever encountered this kind of side effect (or so Dr Pijl told us), it had to be documented, especially considering I'm part of the clinical trials.

So I just have to keep an eye on it- if it starts hurting and/or gets bigger they'll proably do a biopsy and see if they can find out if its anything serious, but they're hoping it goes away on its own.


(which it has)

And NOW... my activation date is this coming Tuesday (April 12th - 15th). I keep getting asked if I'm getting nervous or excited.... a little bit of both actually, but I'm trying NOT to let myself get into a nervous wreck. Its easier to go in with NO expectations than to go in with them and not have them met. With every implantee its new - they can't predict exactly what I will hear, how MUCH I will hear - its all variable depending on how well I adapt to the stimulations.

I know that for the first while all I will hear will be pings and poppings... and that slowly they
will take on different sounds and frequencies as I learn to understand what the stimulation
to my auditory nerve means. A lot of people seem to think that it will be like flipping a light switch and *bam* I hear 100% again. I WISH! I aint no Jamie Summers (Remember her? The Bionic Woman had bionic hearing.)

Oh no it will be a long process which will require me to study sound, listen to people talking, and trying different speech processing programs with my implant to find out which one works for me the best, which settings are the best etc.

So thats the first post...I will be in Vancouver Tuesday to Friday and will make another longish post next weekend regarding what the activation process was like.

And so it begins.....

Assimiliation in t-minus 2 days and counting.