Tuesday, March 27, 2007

settling in

It takes 5 minutes for me to settle into a new environment. I’ll go through the process of sorting the sounds out until I figure out what I hear. It is like having a filing cabinet in my head: faced with a piece of paper, I look it over, analyze what to do with it and where it can go. When I know what it is, I attend to it with interest or toss it aside and move on. That is the irony with sound processing in my head. Listening is a learning experience every day.

If I don’t understand its meaning, I cannot let go. I’ve got to know what it is, and when I do, yes I’ll function better thank you very much. I am easily distracted with new sounds and will attempt to understand where they are coming from.
When I know, then it is simply filed away and I can move on. Once I become familiar with a specific sound, especially speech, I am comfortable and able to decipher it with more fluidity. I have been in places where I can be very uncomfortable – for example, and most notably, the famous and very Canadian Tim Horton’s. Every Canadian knows what it is (leave me comment if you are Canadian and do not know!). It is a franchise that sells donuts and coffee, but it has its own unique energy … and sounds. Though it is not a place I frequent, I’ll once in awhile satisfy my craving for a plain old-fashioned donut with a cup of steeped tea. When I am there, I find myself caught in a struggle: ESL youth at their first job, being trained as cashiers, are visibly challenged by the demands of customer service. I’ve been there too; I worked at a bank for a few good years just to get my fears of interacting with the public out of my system. I even had a subconscious desire to educate the public about deafness, to make them feel less afraid, to realize that we could be approachable! A little sign at my cubby announced, “I am deaf, I need to read your lips.” Maybe that doesn’t appear approachable. *grin* I have memories of witnessing expressions mouthing a “whoa” or a stare of confusion would meet my eyes, as if I was something from outer space (at least outside their box). I’d greet them gently to reassure them and it usually worked. I admit I had the irate customer yell at me every once in awhile, telling me gibberish I could not understand. I missed the words, but the body language told me I had no right to be there to deal with their accounts, leaving me weakened, confused and crumbled into the dark corridors of my wicket. Reassurance by kind staff let me know the customer was out of hand and that I was alright, still doing ok (as long as I’m balancing debits and credits at the end of the day in spite of unbalanced tempers).

In my experience at Tim Horton’s, I am one of the customers that they might dread, on the other side of the counter from where I used to work, in occasional fear. I stall them and stir them and make them anxious when communication isn’t connecting. They ask such simple questions I cannot understand. “Milk or sugar?” “Here, or to go?” I answer back with “hmmm?” “pardon?” “what was that again?” maybe once, maybe twice. What they say is much too fast and automated for my slow and processing mind. I feel best when I leave with a smile, hoping they have learned how to do it “better next time,” or maybe something more meaningful in the mystery of human interaction. I also hear them a little better by the time I leave, having observed their strong accent another time or two while awaiting my order. If the line of customers isn’t too long, I share a bit about my hearing loss, even my new device, and their response usually expresses enlightenment in a spirit of warmth. They show relief, understanding, and perhaps even share of having a relative or acquaintance who cannot hear. Our experiences are nearer to one another than we often expect, and there is something rich and more meaningful to the 5 minute settling in than meets the ear.

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Sunday, January 28, 2007

peaceful sensations

Its Saturday night. I’m having a glass of wine, listening to Mozart, and reflecting on how much life has changed. I still can’t accept its been 9 months with my cochlear implant. I ask myself why. So much has happened in this short space of time. But to spare endless ramblings, I will limit this entry to my experiences with music.

I used to enjoy Rock and Roll, its energy, its feel on the chest, the vibration, and perhaps the feeling that I was normal, listening to and enjoying what everyone else was. I cannot believe how much this has changed, that it has even become more ‘noisy,’ complicated. Strings have a new meaning to my sense of music. I find myself relaxed and absorbing the music with more of myself.

I loved the Christmas season this year. I used to feel the music with my body, I now process the music by distinguishing the notes, instruments and harmony. I spent my life TRYING so hard to make sense of the lyrics, not so much the music, but for the “hidden” words. Now it is irrelevant to me. Classicals bring out feelings that I haven’t experienced before. I search to make sense of the specific instruments. It is as though music has a new language to me. Before CI, listening to music required practice and focus and the aim was towards the lyrics, to get their meaning. Now, I enjoy a different relationship with music. It has a different purpose in my life, a different enjoyment. A relaxation that is unknown to me and I wonder if it is similar to what hearing people experience listening to music. I think in the past, there was a success element: if I ‘could’ recognize what I was listening to, it was an achievement. Now it is an enjoyment.

Another thought. It’s tough to be in this space and time without sharing what I feel with someone else who understands. It’s difficult to draw attention to my experience with teenaged co-habitants. They are very much into music (also involved in Band at school), spending much of their spare time with music blaring from their rooms, maybe even taking it for granted. Even though my girls have good taste, and I thought I would enjoy the heavy energetic rhythms, I look forward to something more peaceful. When they are home, I have succumbed to “tuning out” to the point of turning off all noise. But I have to chuckle. I can still see my mom’s smile when I played Jim Croce or Journey or Carol King over and over as loudly as I could, every day! Now I wonder if her smile was saying something different, perhaps something more like my own now, with my girls. A smile of tolerance, beneath which was a longing for something more peaceful, easy, harmonious, light, but yet fully aware that it meant something to me … as a mother would. How unexpected is this change for me. Music has a whole new feel.


Monday, October 09, 2006

its about time

I have been working with the button on the processor that regulates sound. I am starting to feel comfortable with the handling of my processor beyond the off/on switch and the changing of the batteries. The sound quality for me has been up and down. The auditory nerve that sends sound messages to the brain is still all over the place. It has been six months with this new hearing and it is a matter of time before I have an ideal map and the nerves settle. I STILL prefer the CI hearing experience over the hearing aids, with all its tormented trials and trembling tribulations. I would guess it is 70% good for environmental sound and 60% good for speech understanding. I have a persistent habit of turning to look at peoples lips. I have to make an effort to keep my eyes elsewhere when someone speaks to me. Deliberately, in conversation, my eyes rest on a persons eyes rather than on the mouth.

I attended a CHHA (Canadian Hard of Hearing Association) conference last week. I had trouble hearing speech in a noisy enviroment and couldn't figure out how to tame the echoing noise that I was dealing with. I was delighted (and admittedly, most relieved) to find one of my audiologists there. She informed me that Cochlear Corp has been re-looking at the mapping strategies and that there would be further training for the CI professionals at the end of October. She gave me helpful suggestions to focus on in the next little while. As this conference was geared to the hard of hearing, they had trade show booths with products to assist hearing. I had a chance to try out assistive listening devices that hook up to my cell phone. I learned about an FM that will work in bluetooth and that was so slick. It is hands-free, with zero background noise allowing for perfect listening conditions on the phone where ever I go. It is not cheap, but in my philosophy, where there is a will, there is a way and I will have one of those some day.

I managed to get my hearing aid in for some programming adjustments as well. I still need to work with it and pay attention to how it supports my CI. My HA audiologist remarked how well I could hear her with the CI and agreed the CI was a good choice for me. When I make appointments, I have an easier time listening to the details as I look at my calendar "..October 11th, 1pm..." I think my penmanship will improve. Its about time.

Sunday, September 17, 2006

a picture speaks a thousand words

Here you see the Cochlear Implant "Freedom" processor that I wear every day. I found out this week that Cochlear is coming out with a smaller version of this and it is now being run on two batteries (instead of the three I use) with an option to use rechargables.

boiling water

Today I was out of the kitchen at dinnertime, down the hall and in a room. I instinctively reacted to water boiling on the stove. Racing for the pot, I was overcome at the realization at hearing it. I had NOT been 'alerted' to it by another! This is a CI moment for me.

Its been a little strange with this map this week. Some moments I am hearing very comfortably, and another time I balk at its lack of performance. It has been noticeably up and down for some reason.

Wednesday, September 13, 2006

ongoing changes

I have had significant changes to my hearing experience since mild adjustments were made to my CI last week. High frequencies have fuller pitches. This means I am identifying more variety in sound. I shake my head in the realization that hearing through the CI is such an ongoing learning experience! It is quite different from any new hearing aid I've had. With hearing aids, I try it once or twice, see if I like it and make an immediate decision. Not so with a CI!

I heard the ambulance siren today! I did not even recognize it and looked about in confusion until it was in my sight. A Speech-Language-Pathologist (who I was accompanying to a work-related appointment) was the driver. She was stuck on the road and could not move. Speaking of emergency vehicles, in the past I would see cars around me veering to the curb and that was my 'clue" such a vehicle was approaching. Anyway, the SLP observed my searching reaction and she didn't think to alert me to the siren noise. That was good, as the CI proved successful all on its own. I need to hear it again so I can identify with it once more. I had been stunned and confused by its piercing call that I can't even describe its sound at this moment. But yes, it is a siren sound, very new to me right now. I understand police sirens ARE different from ambulance sirens - I would like to find that out for myself. I could go to the listening therapy sites and look it up but I am eager to get to a listening book and knit for a while. (A knit blog is under construction! I will call it "Knit n Listen" (http://knitnlisten.blogspot.com) because I am trying to combine the two at the same time. That way I am not as heavily dependent on book text or lipreading while I listen.)

In my entry "Toaster vs Doorbell," I shared about my inability to hear the doorbell but could hear the toaster ring. Now that has changed, since activation (it's been 5 months now.) My doorbell sounds marvelous! I had asked the girls to ring the doorbell when they came home so that I could ensure I could hear it. They think I'm a little 'out there' when I get excited about these things. The toaster alert signal I can hear anywhere on the top floor. It is nearly like a telephone ring impossible to miss. The building in which I work in has a doorbell also and its call draws my attention every time. A smile ensues.

Today, while at a red light I recognized an engine idling beside me on the road and it sounded like it needed work. I didn't have anyone to clarify this, but I feel certain it was a bad engine. I felt an urge to wave the driver down and ask him. I dont think I'll do that though. I have NEVER been able to identify when my car might have a problem. Recent case in point: About a year ago, pre-CI, my girls told me the car I was driving sounded terrible and that it had a high pitch whine to it. I recall wondering at that time what it was I was missing through my deafness. I imagine it may have been similar to the engine I heard today. A torn fan belt? Maybe I was a mechanic in my former life. My dad would probably nod in agreement - I used to be so curious about fixing things and would ask lots of questions as he made repairs to just about anything.

I went for an early morning run the other day. I experienced penetrating chirping sounds that felt like they were coming from within the ear. Birds! So early in the morning? I was to the point where I muttered dryly to myself: "Good morning birds. Yes yes, I hear you. Now just be quiet and let me awake without so much noise." I HAD been able to hear it through the hearing aid years ago but it was lacking pitch and loudness. I haven't been wearing my hearing aid (HA) due to a sore ear canal triggered on by a deteriorating earmold. Besides, I decided I needed to give my brain a chance to adapt to the new mapping. My audiologist dr. mentioned to me that I am particularily sensitive and resistant to small change on my maps. He made a point that this was a significant new map because I had some confusion in the past understanding what my thresholds in the high frequencies were. I've not experienced normal hearing so I have nothing to compare to but what was through a lifetime of damaged residual hearing, obtained only through a high-powered hearing aid. I have to rethink what the meaning of loudness versus sharpness means. With this in mind, the audiologist helped make the changes and insisted that it is a fair map to work with.

Saturday, July 15, 2006

my early summer experience 2006

I am hearing phrases without lipreading every day. Some days I have to work to break the habitual skill of reading lips. In doing that, it brings amusement when I realize I hardly used my visual skill and wonder if I ever looked at the person. For example, I spent nearly a half hour with a librarian who guided me to audio books using the computer. Her voice was perfect for understanding and I was able to keep my eyes on the screen as she talked. When I returned a few days later, I had to recall what she might look like. I have finished listening and reading "The Pearl" by John Steinbeck. I am encouraged by listening books that I treated myself to an iPOD using gift money and will soon download audiobooks and listen most anywhere, rather than confine myself to a large tape deck at home. I still need the book to follow. I did bring home a bridged audiobook by mistake. However I quickly caught on and was able to detect the phrases quickly when I scanned the pages to find matching words. I would have never been able to do that before, as I can recall the frustration and would quickly give up.

I attended the Annual CI picnic that the CI team arranges each year. I think it is the third year now, and apparently it was the biggest turnout ever. It is good for us to go and share experiences and get feedback from others. I went last year when I was a candidate and got much encouragement. This year, I noticed a bit of a trait. Half of the recipients i spoke to were turning their heads slightly to direct the microphone toward the speaker. (I wonder if my accent is unique to them. I need to ask that question. I'll get into the topic of accents later.) I have been paying more attention to the location of my CI since and need to ensure I am in an optimal position for hearing speech. I also try to be aware of the program I am using on the processor when I enter a new setting or environment. I still need a little time to adapt as my experience is still somewhat premature.

I recently spent a weekend with family along with my Aunt and Uncle from Red Deer, Alberta. Their daughter and her husband, vacationing in Gig Harbor, WA, came for an evening and we socialized in a large group setting. I had an ability to understand and participate fully. I also offered to drive for my mother, aunt and uncle. There was ongoing chatter among us and I could make some sense of the conversation and join in easily while my eyes are fixed on the road. Group conversation is no longer tiring!

My daughters agree with no hesitation that I am having a much easier time understanding them and conversation is becoming more effortless all around. Big smiles abound.

Sunday, June 25, 2006

an example of my progress

Last night I spent time at work in this Auditory Therapy site in CiHear.com under the link, "American English Pronunciation Practice."

These are an example of the words I was trying to decipher:

van/fan (I found this hard)
very/ferry (hard, again!)
safe/save (Phew, this was easy)
leave/leaf (Ah, ok, I got this)
lice/rice (I got 12 guesses right, and 2 wrong. I found it challenging, but am starting to recognize the R...)
low/row (8/2)
long/wrong (7/3)
shout/shot (6/4 - I started out weak but improved at last half)
cloud/clod (6/4)
pound/pond (5/5)
pout/pot (9/1)
these/z's (10/0)
breathe/breeze 10/0
clothing/closing 10/0
rhythm/risen 10/0
said/sad 5/5 (mostly guessing - I thought this would be easy.. not so!)
guess/gas 6/4

By this time I'd had enough. It was fun trying without any lipreading cues. This is excellent practice as I have no context of sentences to support my understanding.

Also, this week, I noticed that women's voices were sounding more fluid. Initially I found male voices easier to hear and their voices rich with bass. I found women's voices irritating (I say this with a sheepish grin) as the high frequency pitches in a female voice sounded raspy to me. The auditory nerve does take time to settle. This is so interesting to me because previous to the implant I preferred female voices for understanding. I take great pleasure in listening to anybody now! No more seclusion nor isolation - I am ready to take on the world!

the gift of words in my path

I have gone bilateral with the support of the hearing aid (HA) in the other ear. It was a strange start as it felt as though I had two brains processing different sound information at once. Thankfully it was a day or two before it blended together and became immersed and gave me hope. The reason for wearing the CI alone for two months was to allow the brain to adapt to it and become dependent on the CI information. The important thing is to ensure the HA doesn't dominate, because it doesn't give accurate information to the brain, but rather it provides some surround sound and can provide support to the CI. It also keeps the auditory nerve working (maybe one day I'll have surgery in the other ear though at present Canada does not do bilateral implants.) I have adapted to wearing the CI and HA very well. In this early phase, I often will turn off one or the other to compare the quality of sounds that I hear. The CI is the shining winner for processing sound and bringing clarity to my hearing.

I am listening to Dr. Jekyll and Mr. Hyde on audiotape with the text in hand. This is a great and challenging read, and the narrator keeps me hooked to the dialogue. There are many words that aren't necessarily 'everyday words' and keep me attentive as these are words I recognize but have had inability to pronunciate them properly for now obvious reasons... because I hear more clearly now, I can decipher these advanced words and correct myself. It causes me to think about the significance of hearing loss and how we are affected by it. The ability to hear is truly a gift and that moves me to no end!

A turning moment happened for me right after my map update three weeks ago. While working at preschool, we had time for music and we danced rambunctiously to a CD. Suddenly I am alerted to a string of words I'd not noticed before. I asked a colleague, "Am I hearing, "Cha cha cha?" to which she replied, "Yes, the song is called "Bear - Cha Cha cha." I asked if it was something that had been played before... and she nodded positively. The chant mysteriously jumped out in this song that was formerly unrecognizable to me! All my life I have needed hours and hours of repetitive listening in a chance to recognize a song and to search, at times, desperately for lyrics! My sister and I spent many of our young years together with her vinyl record collection. She would assist me by pointing her finger to lyrics printed on the record jacket over and over until I could make some sense of the voice in the mix. (Thank you dear Di for your love and support.) Now I don't need as much guidance and can work on the benefit of the CI to relay precise sound information. Nowadays I am hearing with clarity words and phrases from all around me, even IN background noise and it gets so exciting! Along with hearing everything more than ever in my life, it is HEAVENLY to hear my two beautiful daughters with increasing ease, especially as they always have music playing nearby and it doesn't get in the way of my ability to understand them.

Following my mapping revision, I had the privilege to meet Rick Hansen who did the World In Motion Tour. An amazing and determined paraplegic, he wheeled for two years around the world to raise awareness and funds for spinal cord injury. In 1986 at the end of his tour,I witnessed him rolling into Vancouver in front of City Hall. Now was a chance to tell him what he did was so inspiring to all of us as it shows life doesn't need to stop with our challenges. We can still pursue our dreams. He showed interest in my CI experience, asking questions about its success. He expressed that he knows of another CI recipient who is on the board for one of the organizations I work for. It was an exciting moment to talk with this man who inspired so many people with and without disability. His words of wisdom are encouraging: "Someday a wheelchair will be a thing of the past found only in museums."
"When you set a goal you can accomplish it, if you set your mind to it. All you need to do is persevere."
This is a favorite: "There are no walls in life that you can't climb. Never give up."

My three weeks of late have been surrounded with words coming to me with increasing clarity and I am really enjoying this phase in my life. The misery I had with the first CI have all but become a blur in my memory. The hub of the school year-end has come to a close, and now I hope to focus on more auditory therapy through book tapes and in CiHear.com. I am especially eager to spend time with my family in the States and see what it is like to be in the family setting as there is alot of chatter when we get together. This is like Christmas - the gift of words in my path.

Wednesday, June 07, 2006

the doors blow down

I have been listening for two months now and have now recently reached my comfort zone. Two weeks ago I had a change to my map using what is called a "Gain" on 10 electrodes. I had expressed to the audiologist that I felt that these few electrodes were not working well for me. This significant feature 'Gain' I am not sure what the purpose is but it felt as if the loose and echoing signals I'd been having became settled and more rich with clarity. I felt a familiarity not unlike my former experience with a good hearing aid. The echoing stopped, the hissing of the running water and other issues have stopped bothering me and now I enter any new space comfortable and without much adjustment. It was quite an ordeal to enter the classroom with the little children's high pitched voices and that seems to be behind me now.

I have been practicing listening on the phone and am doing very well with familiar voices! My mom and I can carry a lengthy conversation without trouble. It is two months activation and I'd never have expected such a good result. Now I need phone buddies to practice with! I have a new landline phone, a cordless Panasonic 5.8 Gigahertz. It has a voice enhancer and voices are sounding better on it all the time. I also picked up a headset to plug into it and this makes a huge difference to the quality of hearing, mainly because the headset sits fixed over the microphone on the processor and eliminates any rubbing noise that I was enduring with holding the phone over the ear.

Last night I went to my daughters Year End Band Concert at their high school. What a joy that was - I still have a ways to go as far as making sense of some of the sounds but I felt connected to the event and I was tapping to the beat without trouble. The music teacher would speak into the mike and though I was able to pick more words than ever before, I wasn't able to understand what he was saying beyond the expected such as the name of a song about to be performed. (Of course the gym is not good for acoustics!) I used cues from the program flyer to recognize words. An enjoyable experience I had was being able to socialize in this setting and hear voices directly in front of me using a program on the processor called "Beam."

Last week I saw the girls receive their awards at a school-held ceremony. The acoustics were good in the auditorium. I was quite taken with the microphone used by the speakers. The words were coming through clear on my CI. It's got to get better next year when I can make out the speeches.

Most CI recipients share that it takes a year to be comfortable with the device and the listening ability continues to improve. I can only imagine what that might be like...if sounds for me are improved now, how much better can it get?? It's an exciting thought.

I experienced an afternoon in the park on the weekend and listened to a massive melody of birds singing. (That can get very noisy!) At one point a very loud and unfamiliar sound overwhelmed the space and when we searched for it, we found two squirrels on the tree making chatter. That was interesting! I never knew squirrels make such loud noises other than chew on nuts?

I've been listening to books on tape. What I do is read the book to the tape several times then take the tape with me in the car and listen to it as I drive. Sometimes I'll lose track in my listening but other times I will catch more words and phrases with incredible ease and in those times I rejoice and celebrate my success within me. There is no question the CI is a huge improvement over hearing aids, hands down! Life is good with the CI...

..though every once in a while I still experience very much an 'off day' and do not find the CI pleasant when I put it on in the morning. My brain can be tired, weary, stressed and that is not the ideal condition to be in. I am learning to accept that as a clue that I am not at my best and I need to take care of myself more - rest and release my high expectations of the CI. My emotions do get affected by its performance.

This Friday I will see my audiologist for some listening therapy. At this appointment I am to try out the hearing aid in the other ear and see if that enhances my ability to hear. I did try it once recently with the CI on the other side and was mortified to hear fragmented sounds coming through the hearing aid. It is obvious I have spent my LIFE listening through damaged ears. It is a humbling experience... I wonder if I will ever wear the hearing aid again. Time will tell.

Monday, May 22, 2006

time, perserverance and patience

I am recovering from a bad cold. It is the first I have been ill while activated with the CI. I had an awful time hearing with the processor and opted not to wear it much while recovering in bed. I have since found out from CI users that when they are sick or stressed, it can be hard to tolerate wearing the device. I have discovered that the brain and processor must work in sync together. The brain needs to be alert and healthy while the processor runs in top shape for best results. At the end of the day I continue to tire out quickly, and am getting to bed earlier at night..

I look forward to the end of the week as I will be meeting with my audiologist for some more re-mapping of my device. I still rely heavily on lipreading and wish to pursue some speech therapy.

I phoned my mother on Mothers Day. My sister picked up the phone and I thought it was her husband because the CI fooled me into thinking it was a male voice! It was a couple of days before I found out I had been talking to my sister. I also found it very difficult to hear my mother. I expected that I might have trouble, so I did not get too discouraged. Time, perserverance and patience are all in order.

Saturday, May 06, 2006

the first month of activation

In the last week to 10 days the sounds going through my CI began to rise up and out of control and required stabilizing. My ability to understand speech without lipreading had dropped. I endured shrilling and unpleasant sounds. Yesterday I went back to the audiologist for some more adjustments that consisted mostly of changes in the high frequencies.

Today I will focus on one program that is quieter than any previous map I have had. My threshold for loudness seems to decrease as my auditory nerve awakens with exposure to sound. In two programs the two highest frequency electrodes were removed as a trial to see if I would understand speech better. This also changes the dynamics of the frequency range and means that I require additional time to adapt. As I write, I feel disoriented by the change in sounds going on in the house and my ability to think clearly is affected.

Today marks the first month of activation with this wild and fascinating device. Two days ago my youngest daughter had a piano performance in the International Music Festival. I had a chance to witness seven young children playing musical pieces. The ability to enjoy music with a fast beat versus a slow romantic piece became quite apparent to me. My brain is premature to decipher the faster pieces.

When I enter a new space or environment, I need time to acclimatize to background noise and voices. For example when I drive the car, park, turn off the engine and get out while a voice speaks to me, my brain is processing the sound change slowly which creates for me a delay to respond. I do experience a wide range of emotion - the anticipation to the clarity of sound and then fall into heavy wearyness when sounds overwhelm me and seem too electronic and unnatural.

I had an opportunity to spend yesterday afternoon and evening with a new CI friend who has been activated under a year. She had a short appointment following mine so we agreed to an early dinner at a mexican cafe. We then proceeded from shop to shop and walked and talked on the busy streets. She would share similar experiences that I am having right now. She would inform me with accuracy phrases that I spoke when she wasn't looking at me. It was great to witness her progress and to feel support and understanding. I am lucky to have a couple of CI friends that I can contact and seek for support.

Its time to move onward and approach a new day (and a new month) with these ongoing changes in sound perspective. I am learning to relax on this rollercoaster I am on..

Tuesday, April 25, 2006

it is truly Spring

I had a turnaround with my CI and got to enjoy the weekend more deeply with it. The mix of sounds and voices are making some sense to me. I was at the beach and downtown all day on Sunday and am feeling increasingly connected to the world thorough sound. While at the beach I heard the ocean waves lapping on the shore and it was soothing and almost musical to me. I heard at least three different bird sounds and that astonished me. I need to learn what kinds of birds make what sound!

Since the turn-on of the CI, this is my first week back to work full time. The energy is returning as I had some adjustments to my processor to lessen the stimulation that was causing me extreme exhaustion. I am working most days this week with the families as well as with my regular job at the preschool. I look forward to hearing all the different voices in different environments. A sense of delight grew inside me while I worked with a woman who has an accent I found difficult to hear. I didn't have to ask her to repeat herself as much because I could make out most of her words! It is truly a miracle.

What a beautiful and unexpected start to my day. As I am writing this, my daughter's alarm went off in the next room and I can hear it from the office! I have not been as quick to put on the CI in the mornings because I find it a deafening start. Not today. I am on my way with more balanced sound.

I think often of my late father and his words when I was a little girl, "One day you will be able to hear...." (Bless you, Dad.) Mom left here for her homestead on Saturday morning after being with me for more than two weeks. Thank you Mom for everything. I am glad you were able to be a part of this monumental time.

Wednesday, April 19, 2006

toaster vs doorbell

What a ride it has been for these last two weeks of re-activation. There is so much sound to hear and learn all over again. I experience quite a bit of fatigue as I go through the day hearing and listening! The level of fatigue I deal with is probably the part that is most unexpected to me and I realize it will pass once the body and mind gets used to the electronic stimulation. The doctor says it will take a month. I had a very good and alert kind of day on Easter Sunday and crashed by 8pm that night. I have been recovering ever since... I was grateful for the steady stream of energy that day and it gave me a sense of being my old self again. The CI is overwhelming, confusing, and somewhat beautiful all at the same time. It requires alot of perserverance to sort the sounds out. I deal with static noise in my head and the audiologist tells me its my brain sorting out the sounds. As sounds become more clearer, the static lessens.

I now realize that I have a toaster oven that makes a 'ding' sound when the toast is ready. With the hearing aid, and IF I was standing next to it, I would hear a click. No longer do the girls have to tell me the toast is ready as I can hear the toaster ding from another room! I don't hear the doorbell, just yet. This is so odd to me as I've had no problem with doorbells before. Again the CI team insist the sound will come. This is the irony. I am alerted to the door and instead it is the toast thats ready! I have learned to decipher the difference - according to memory the doorbell should do a 'ding dong' and the toaster only does a single 'ding.'

Then there was the day I heard the beat to music and no one else did, except Kirsti who had the earplugs attached to the MP3 player playing, and she was many feet away. Mom was bewildered with me as I insisted the music was playing in the house.

I am very lucky to have my mother here. She is so much help in every way I could write a page about her tremendous support. She is the one that keeps people from lining up at the door wondering why I won't answer. She tells me, "its the doorbell." She is also there to eat the extra toast while I test just how bionic my ears are.

Saturday, April 08, 2006

very proud and happy

Yesterday I had some fine tuning on three programs that were downloaded into the processor. By the end of the day I had a fourth program installed and I am to spend the weekend exploring the programs to see what makes the most sense in sound for me. They each have different speeds in pulses per second (250, 500, 900 and 1200 pps). We found during the programming, with the faster pulses per second (1200), I was experiencing facial twitches on the side of my face. Some electrodes affecting my face were either taken off the map or lowered in volume. There is an expectation I won't do as well with the faster speeds, but it doesn't mean I am being deprived of quality in sound. Different pulse rates work differently for everyone. However, if I do favor this faster map, it means the audiologist may not have as much flexibility to work with it because of the facial twitching. In other words the slower maps may provide more flexibility and opportunity for fine tuning. Yesterday morning I was hooked back up to the computer and Lisa, another audiologist on the team, worked away at more programming and asked tons of questions. This is good speech practice as I have to come up with a correct answer or the outcome of my mapping is affected if I give poor feedback!

At lunchtime, Mom, Di and I were craving protein and we devoured hamburgers at Vera's, a hot spot on Davie street. I returned back to the hospital with more mental clarity. Another CI team member, audiologist Cindy, suggested we try some word recognition tests. My immediate thought was there was NO WAY I would do well - I'd announced first thing in the morning that I had zero sense of speech recognition even though I was making sense of some environmental sounds. (A vehicle engine, for instance). Well, the testing turned out to be the highlight of the day. Even though these were simple tests with slow speech in a quiet room, I was doing very well in speech understanding in the beginning levels (and jumping excitedly here) without lipreading! I didn't think to ask her how many levels there are in these Speech Recognition tests, it doesn't matter, I was just so excited at the outcome. I missed one word -I just don't hear the word "coughdrop" - it sounds like "Kah-traph." At any rate it was a most encouraging session and Cindy discussed how we can improve communication in order for me to develop better speech understanding. Apparently the CI receives sound best when speakers are directly in front of me. It's not unlike how people have been speaking to me.

I came home with two audio books from the audiology library to practice with and they were lots of fun for me. A new hobby for me, listening to books. I also listened to a few familiar musical artists and was able to follow the lyrics. All this on my second day of activation. Charles Dickens sums it up perfectly for me:

Thursday, April 06, 2006

the second time around...

I really appreciate everyone who has contacted me and my family in the last 48 hours. I received thoughtful hopes and well wishes as I entered my first day of re-activation. It was a very good day. Daughter Lauren came with our group to watch the audiologist set up the CI. The audiologist and I had an intense six hour day working with the programming of the processor. I was hooked up to the hard drive while he fiddled around with the programming and asked many questions about what I was hearing. The sounds I heard consisted mostly of hearing a range of frequency sound in beeps and finding thresholds for comfort and quiet. As this took all day, we also had a break of lunch and coffee. During those times, I had an opportunity to explore the world outside. I chose to be attentive and quiet. I do not like hearing myself talk because it sounds so full of bass. Voices are difficult to understand right now. I hear environmental sounds and inquire what they are, but I also need to be led to sounds that come into my space. My family seems to know when to guide me and show patience when I ask what I'm hearing. I have been feeling overwhelmed through out the whole process and am now physically exhausted. My spirits are good, everyone is happy, and the audiologist is especially content with the outcome and feels that I should do very well.

Today was alot different from my original activation day, so we had champagne tonight to celebrate! We go back tomorrow for more fine tuning.

Thursday, March 30, 2006

post-surgery update

It has been an exceptional recovery without any dizziness or nausea. I took four days off post-surgery. (I used the quiet time knitting away.) That forced me to sit still as I was keyed up at times with relief. For nearly a week now I have been back at work steadily. It has felt very good to be back in the routine and to feel a sense of ease in my life again. I felt the calm immediately upon awaking from surgery. The worst is over and I could move forward. The St. Paul's Hospital CI team and staff are kind and caring professionals and I feel blessed for their care.

Mom is a wonderful caregiver and I don't doubt that having a mom nearby speeds up the healing process. As a bonus for all her efforts, the women's Curling World Championships was in play and we were able to watch it all week. Mom is the sports biggest fan! Since Mom has no TV curling coverage at her home,she opted to stay the weekend with me to watch the finals. U.S lost to Sweden with a close game. Canada came in 3rd. When I am being "switched-on" on Thursday, April 6th, it will be the Men's turn to play the World Championships. (I know what mom is thinking. She claims she is coming back up for the switch-on of the Cochlear Implant... but it could be the switch-to the curling coverage?) Either way I will join her and in curiosity listen to the curling environment. Mom says there can be a whole lot of yelling going on on the part of the skip who is the captain and player of the team. I dare to hear anything that comes my way! Other family members have expressed desire to be a part of the CI switch-on experience.

I feel good. In the picture, I am modeling my first completed knitted sock. (blue). On my other foot is the sock Mom made for me a year ago. She inspired and coached me through the blue one. The cat is on the two quilts I made in recent years. Curling is on TV, of course.

Tuesday, March 21, 2006

its the first day of spring!

Its a beautiful day to wake up to. We drove in to Vancouver at the break of dawn and got to the hospital in a record 30 minutes. We were waiting at the door to the Surgery Daycare - it opens at 6:30 in the morning. The Surgeon came in wearing his bicycle gear. The lucky guy rides his bike to and from work! Once I was admitted and in my hospital garb, I was moving along quickly towards the big moment. The surgery started at 7:55 and I awoke at 10:30 am on my own and felt very good. My eyes were thick with fluid and I had trouble seeing. It felt like it was covered with vaseline. The nurse helped clean that up and explained that during head surgery, sometimes the eyeballs will fill with fluid and enlarge.

After being in recovery a short time, I was moved to Surgical Daycare where I immediately began walking slowly at 11 am. I felt no sense of dizziness and that was such a relief. The audiologist and the surgeon came in to check with me and to share their experience. They were very enthused by the outcome of the second procedure. The big and imposing X-ray machine was wheeled into the OR and they were able to take pictures of the re-implant before I was stitched up. The array testing was done (a routine procedure) and while it was compared to the first, the result was different. It made more sense to the audiologist and they agree I have got to do much better with this new CI. I was in the car and ready to go home at 1 pm.

I had a good 12 hour sleep last night and have been lingering about quietly. I will head to bed for some more sleep. I can do that now the uncomfortable bandage has come off. The incision is covered with a surgical tape.

Saturday, March 18, 2006

A case study

The past two days I have been at the hospital for some more testing. As a "case study,” the audiologist wanted to do an integrity test on the existing device in my head. It was an in-depth look at the validity of the test results using the displaced array. According to the computer data, the current of the electrodes that gave me strange sensations were going in the opposite direction. This abnormality of the current seem to explain the reason why I wasn't getting the frequencies to hear properly.

I also had X-rays done on the head to correlate with the new data. I was also reassured that I would be having an X-ray done once the new implant is inserted into the cochlea. This gives me confidence and eases my spirit about the re-implantation. (In 25 years that the hospital has been implanting these devices, to their knowledge this fold-back has never happened before.) Because this bizarre occurrence did happen to me, I have fleeting fears of it happening again. It is an unsettling thought that I can do without. I want to wake up after the surgery and know that a picture has been taken and that the array is making a full circle inside my cochlea as it should.

It is likely that during the surgery the doctor will do an intravenous of Gravol for me - I had quite a time with nausea after the first surgery - and that was what kept me in the hospital until later in the eve. I wasn't allowed to go home until I was feeling better. Some implantees have stayed over night, but this is becoming rare these days because the surgery is less invasive. There is improved monitoring of anesthesia along with smaller incisions which allows for a faster recovery time. Some patients do go home upon awaking. That would be nice but I won’t hold my breath. I know I am in good care at St. Pauls and I accept everyone as being unique and what happens post surgery is different for everyone.

I also had an un-aided "sentence understanding test" to see how well I was hearing with the displaced CI. The results showed 18% accuracy of words compared to 45% prior to surgery. (I recently completed a round of antibiotics to cure a case of bronchitis that struck me the week before and it is possible I still have some fluid in the ear.) I am wondering how well my understanding of sentences will be eventually... and this is the part I look forward to. I have faith my hearing IS going to be so much better than it has ever been for me. For now, I sign off with a soft smile and wish to express my gratefulness for your support and words of care for me. As a fellow CI friend made aware to me, Monday marks the first day of Spring and with that it brings a new beginning. Yes!

Wednesday, March 15, 2006

A re-implantation to come, at 8 am

This Monday, March 20th, marks the date of my re-implantation. I am to be there at 6:30 am sharp. It's been a sombre few months living with one hearing aid. I often reflect on experiences I had while activated for a short time. When the rain falls on the roof of the car, I think of what I heard a month ago. When the water runs from the faucet, I barely remember its tune. When I am in Safeway I recall the music and sounds around me and it feels like a passing dream. I have so much to discover in our noisy world and I am waiting for it!

As I write, I am visiting family in Oregon. The girls and I went skiing on the weekend with my brother and his lovely wife, Suzette. Even though the experience of skiing itself was refreshing and such a lift for me, I could not change my pattern of skiing short quick turns to long and winding ones - in fear of the inability to hear anyone approaching from behind. Everywhere I go, I have a strong sense of being confined in silence. I feel shy of making conversation with people, particularily in a group. With this said, I have my eye to activation day! If the healing goes well, the audiologist and I hope that I can be switched-on again on April 6th. I am very curious about what I will experience the second time around.

My mom is doing extremely well with her new hip. It has been 9 weeks post-surgery for her. We spent the day roaming the stores yesterday. She drives and moves very well and without any pain. I am very grateful she will be present for my surgery (and re-activation day). I am also in ease knowing that she can now manage the stairs in the house where we live. It has been wonderful to witness her amazing recovery. I remain hopeful for a chance at success with my new CI, and intend to provide weekly updates once I get through Monday's event.

Saturday, February 11, 2006

These days

I want to say all is well. I want my readers to have a positive experience. I want them to read something hopeful… I want you to not worry about me; and you don’t have to. My hope is not so tangible these days. Still there is grace. There is a sunny day. There is joy in a smile from a child. There is affirmation from a colleague. There is evidence that people believe in me, and I cannot tell you what that means to me.

Most of my life I’ve been believed in, the example, the success story. But the belief people have given me in recent years has not been for the battle I’ve fought, but for the humanity I bear. So I am torn. I want the positive comments in my blog: the “way to go”, the “we’re so proud of you”, “you’re so positive”, and now I find myself not only without sound, but without speech. In the last week I’ve had to trade words for a struggling spirit. Again, you do not need to worry about me, and I have been so grateful for the encouragement and care that is so genuine and wishing for my best. But I have to ask myself, do I have writer’s blog because I’m afraid to tell you how I really feel. Even now there is solace in putting this to pen, and somehow I am assured in my spirit that you will still be there for me, and even understand, and maybe be even more closer to my reality. And so, what is my reality?! This is the question that arises from deep within me tonight. Already just giving voice to this releases my spirit and reunites me with every one of you who I know walk with me through this ordeal. What I’m really trying to do here is give myself a permissive space, to give my humanity room to breathe a more sombre air. This has been a bittersweet time for me; I struggle with keeping positive, but also, being honest with myself. With the triumphant spirit that surrounds us, I’m even afraid to take the risk of penning these thoughts and making them public.

I’m not sure if I’m angry. I’m not sure if I’m disappointed. I’m not sure if I want to be alone, or to have company. Last week I made an attempt to be with the ladies for a night out but how quickly my excitement turned into a reminder what I cannot enjoy - company! I want it so bad but I’m afraid of it. I want so bad to have the right words, but am afraid I will disappoint my readers. I guess I just need this time to grieve.

There is nonetheless much reason to take heart. Through this journey of excitement and defeat, I have learned much more about the gift of our humanity. Doctors and scientists have become my friends, allies in the common human struggle. Boundaries between high respected positions and ordinary everyday people have been transgressed because of my very struggle. The irony is intoxicating. Bosses and employees have united over the care of my situation. Colleagues, family and friends have passed over encouragement in the form of music, little notes, affirming emails and gestures of genuine care. Everyone has come a little closer to my world, so why do I feel so far away? This is the question I cannot answer. Its mystery is yet to be unraveled. Just maybe I want to reach out to the closeness that’s there, but I can’t, or I’m afraid. Still questions linger. I am grateful for the mysterious beauty that this bittersweet experience has brought me.

Here is some retrospect of a trying week, but who wants to read about “struggle” in a blog? That is why I have been absent! If I couldn’t participate meaningfully in enjoying the Superbowl, or the Grammy’s, with family and friends then how could I participate honestly in my blog? Originally I was eager to try my processor for the big game because it performs best where there is lots of noise. But as I was attentive to the half-time shows by Stevie Wonder and the Rolling Stones, I felt how disconnected I was. This was also true with the Grammy’s. Another bittersweet moment. Big fan of music, big realization of what I can’t enjoy. And these days, the list of things seems to go on. Even the blog itself carries a bittersweet element. I have felt closer, nearer, more intimate with family, friends and the human race at large, but that only makes me want to enter it/you all so much deeper, when momentary unexpected daily reminders say “even louder” that I cannot! Maybe it’s the expectation that the CI created, that I let myself too earnestly believe. Maybe it’s living with one measly hearing aid, or that my other ear “now” remains shot. Maybe it’s all the equipment I have to mess with, the batteries, the feedback, and the obsession to read everyone’s lips. I am weary of the struggle that comes with deafness. Thank you for letting my pen witness a place I needed to travel, and for bearing witness with care to what I call, “these days.”

Thursday, February 02, 2006

In limbo

Driving to work and seeking distraction from this sombre state, I listened to my favorite music in the car. It reminded me of the impending grey days before the CI, when I became less interested in music due to further loss of hearing. I could 'see' the music through a fog. It is there, but I can't touch it. I arrived at work and quickly became discouraged and sullen. Everyone and everything sounded awful to me - flat, lifeless yet imposing. I couldn't hear the children. It was mumbojumbo. I felt myself retreating and feeling less social even though I feel supported by my fellow workers. I felt distracted. I want the CI back and all its promising benefits.

I heard back from the audiologist who wanted to connect with me and make sure I was doing OK. He was very reassuring and acknowledged the difficult time I am going through. The surgeon then asked me to come in and meet with him. I asked Mark to accompany me, as I needed a hand to hold. (He has been a rock through this trying time.) The doctor was also affirming and explained further what had happened in my case. He was very apologetic for what had happened. I was then given pre-op and post-op instructions and will await a surgery date. I hope the days in limbo won't be long.

I asked the audi just how big is a human cochlea? He presented a fiberglass example of the cochlea (photo is shown below - the cochlea is on the right edge of the fiberglass piece). I was surprised at how miniscule it is. Lucky for me I had my camera in my purse and took the photo to share! He also presented the silicone array for the photo - this little miracle that blows open doors to sound for many deaf people. The curve at the end of the array is what hugs itself inside the cochlea, sending signals to the auditory nerve that is attached to the cochlea. On the array, the little wire halfway is what the surgeon uses to insert the straightened tip (22 electrodes included) inside the cochlea, and then releases it, enabling the tip to curl around the perimeter of the cochlea. In my case, it was inserted prematurely and somehow folded itself back, so it was dislodged inside the opening about a quarter of the way in. Many doctors have erred at not inserting the electrode array fully as they are hesitant to push the straight tip too far and create more damage. However, the "fold back" of the array is unheard of, so this leaves the medical profession scratching their heads.

During surgery, the array will be removed and checked out. It is a $20k piece of equipment and if it is salvagable, it will be re-inserted. However the surgeon has a low threshold for error and may replace the whole thing. There will be some scar tissue growing on the device so it may not slide right out. However it is much easier to deal with than the first surgery as it doesn't involve any drilling.

The result of the CT Scan

The CT scan showed abnormality in the placement of the electrode array. It appears to be folded back on itself. This explains alot of the results I've been having. Before doing surgery for re-implantation, the surgeon wants to solicit some opinion from other surgeons before doing anything. They are also in contact with the experts at Cochlear Corp.

I am quite relieved, as this means better things to come. I know I am in very good hands, and the CI Team are bending over backwards to resolve the issue. I'm sure they wish they had a magic wand and could just make this all better. I will have surgery as soon as possible.

I have gone back to the hearing aids until this is resolved.

I thank every one of you for your support and encouragement through your thoughts and prayers by way of email and mailbox, to the girls who have to live with the frustration of the severe loss of hearing in the last few years. I thank the employers who are patient with me for the time required of the CI operation(s) and the extra adjustments that this has taken for me to settle back into my career.

Sunday, January 29, 2006


I have been having problems with sensations in my head, when I should be hearing sound. Some frequencies have inverted which means basically I have little range in frequencies. I am only running on 10 out of a possible 22 electrodes as the rest of them seem to strike a nerve and cause a bodily sensation such as mild dizziness and pecularily, a vibration on the head.

Last Thursday I was informed that the surgeon, CI team and Cochlear Corp. agreed that I was having irregularities in my progress. That was a disappointing surprise. I am going in for a 3D CT scan early on Tuesday morning. This will tell the team the precise placement of the array and its existing devices. It seems the array is not hugging the cochlea curve as it should. There is also suspicion that the array went into a nerve pocket or is touching where it shouldn’t be.

The team are also mystified at how little my residual hearing was unchanged post surgery. This adds to their concerns of the array placement. I was told prior to surgery that once the surgeon enters the cochlea part of the ear, it is difficult to see exactly where the array is going because of the curve of the cochlea itself. Take a look at this 'at' sign: @, which is like the shape of a snail. That is similar to the shape of the cochlea. Imagine where the array needs to go - inside the tiny opening and around.... It is a tricky process that requires crossing the fingers in hope that the remaining hearing will not be damaged. Researchers, scientists and engineers are continually working on making the array as easy to insert and as atraumatic as possible (in other words, less traumatic to the structures of the cochlea.)

There is hope in this: if I am re-implanted, I will have improved hearing progress and that will be easier on me and the CI team. The mappings will be more realistic. That is encouraging given the situation I face because I thought I was doing well even though the audiologists were having a time trying to make things work for me! I had nothing to compare the CI to and summed everyone’s experience as being unique. I still continue to wear the processor as I enjoy some of the crisp sounds and along with the hearing aid in the left ear; it feels as if I am wearing 'two hearing aids' which is good enough for now. I thought that these annoyances I was experiencing were temporary, rather than unusual, as there are symptoms such as head noise, echoing and other oddities that fade away with time.

The surgery team has done re-implantations before for various reasons and I am assured that the second time around is a much simpler process.

This hiccup is a nuisance, but fortunately is expected to be a temporary situation.

Update: I am getting weary with this persistent side effect of feeling a buzz and have opted this afternoon to cease wearing the processor until the issue is resolved. I'm back to wearing my HA's in the interim.

Thursday, January 26, 2006

First week back at work - a mouse!

I just awoke from 10 hours of sleep. I found the first week back to work exhausting. There are new sounds to hear and my both my ears and eyes are constantly following them to connect with what they are. Daily I have a nap after work. I keep telling myself I need exercise to wake up but no, I cannot seem to do that as my eyes need to close for a while.

I am still fascinated that there is an ability to hear distinct sounds in a room of noise. A small child at work likes to cover his mouth and say "uh oh" in a quiet voice. I never knew he was saying that, I only saw the expression with his hand. There have been discoveries - I'd never heard the public sound system in this school and it took me by surprise as I've been working there for two years now. Five years ago I worked at another public school where I would hear the announcements (of course, never could understand them) but I had forgotten about it.

A couple of people told me that my voice sounded less nasal, particularily in one program I was using at the time. That was interesting to me and I would like to be made aware of it if I am talking to you. Thank you for your support!

Today I will be downtown working with the audiologist and tomorrow I shall begin audio-therapy. I am curious and eager to get at the therapy. I have been exploring the audio-therapy sites on the computer and look forward to some guidance from the audiologist on how best I can use them. The link is to the right, in CI Hear. Click on Audiotory Therapy and that is where I have been spending some time these last few days. Monday night I was checking out the links for animal sounds and came upon MOUSE. Curious as to what sound a mouse makes, I listened to it. It is a clicking sound. In timely fashion, my sister connected with me, curious as to how the first few days back at work was going. I directed her attention to what I was doing on the computer with animal sounds and asked her, "Does a mouse actually make a clicking sound??". She said yes, she had to get a new mouse because the other one was much too noisy and the one she is using right now is much quieter.

I dont think we were talking about the same thing. Now who is the brighter one? ;)

Sunday, January 22, 2006

My shopping adventure

This brain and body of mine has been wrestling with the vast array of foreign sound and vibrations. As I feel tired and 'disconnected', I have managed to keep myself as neutral as possible. I have three different programs in the processor to experiment with(also known as: P1, P2, and P3) The audiologist made a suggestion as we finished the monumental week-long programming session: he asked that I focus on one program, and allow it to sink in for a day, then do a rotation of programs in the following days. Saturday I stayed home using program 1 (P1) and took it quite easy, being attentive to human voices and allowing the brain to work through the echoing and squealing sounds. I did marvel at the few 'words' and some environmental sounds that were emerging through the cloud of noise.

My kitchen is the most uncomfortable room in the house as it echoes and booms sound inside me. (There is no cushioning or soft material to absorb sound.) For that reason I hesitated going to Safeway this afternoon. I will close the blog entry with a copy of my sisters email that she wrote to others, and passed on to me, following my experience.

As most of you know, my mother is recuperating well from her hip replacement surgery here, at our home. My sister, Suzy, is learning about life with her very recently switched on cochlear implant. This afternoon Suzy emailed me short instant message emails on her Blackberry from Safeway. It has been very exciting and emotional. She doesn't mind if I share these messages....

1. I'm at Safeway. I hear music playing. I've NEVER heard it before.

2. I wish someone was with me - but then nothing changes at Safeway. The trolley wheels are noisy. Is there music in Safeway? I've heard it before at small stores, but certainly not here.

3. I switched the programs in the processor. I'm definitely picking up more in one program (P1), not the one I've spent the day with (P2). In P1, its very cool to hear separations in sounds: the announcements, then wheels, then a person talking. Not all muffled noise. Now I have something to share in my blog tonight, if I ever get myself out of the store! I'm lingering slowly aisle to aisle.

4. I just asked where the graham crackers were. The guy responded.... (Ahhhgggg, I'm gonna CRY. I'm so emotional and embarrassed!).... I heard his voice in the NOISY Safeway, I didn't even clue-in till a few seconds later. then it hit me that I heard a VOICE was being spoken! Ill get a taste again when I face the cashiers.

5. Ill have to start carrying Kleenex around with me. I don't have any right now. I changed back to P2 (less dramatic = less emotional).

6. Cashier was a new young girl I couldn't hear. Looked like she might be mumbling and a little insecure. I spoke with another staff member I know. I did hear her voice for sure. On home and to have girls unload the car. I feel a bit dizzy now. Time for some down time.

7. I see I spent 2 hours in Safeway? What an adventure.

8. I don't know if I can write in my blog tonight. I'm overwhelmed.

9. Girls are unpacking groceries while I lay on couch. So grateful. Still on P2, and am noticing my brain seemed to "connect" with it later this afternoon.

10. My headnoise disappeared before Safeway. Now it started up again. (Must be auditory nerve stress.) I thought music is playing in the house. K said no.

11. I planned to update my blog tonight, but that may be too much for me. I need to rest up for my first day back at work tmw.

Thursday, January 19, 2006


Its been a tough few hours.. Yesterday at noon I had to cut the mapping short. My body and brain screamed "TMI" (too much information) and I had to get myself home and straight to bed. The strange new way of listening is too much, too different, too much a barrier and I feel lost. I long to return to a feeling of world-presence. Im feeling better this morning, after much needed sleep. I am not as eager to put on the processor this morning... I like the quiet right now. I am tired of the head noise, and the bodily confusion. I know it will pass, I just have to get through it. The whole audible basis of perception is completely altered and life feels foreign in ways. When I finish writing I'll grit my teeth and put it on. I am hopeful that it will get better today.. I have a feeling it will, because as I lay in bed in stillness and quiet last night, I left the CI on to allow my brain to sort itself out. I felt a sense of calm coming into my space, which was oh so good. When I went to sleep, I took it off to allow the skin, where the magnet is that holds the transmitter, to recover.

I realize ever since i was turned on, my attentiveness to life in sound was on HIGH and I haven't had a moment of quiet until my body told me to stop.

Off to get ready to go back to the hospital. Its a slow and long commute. I may play music, or I may allow myself to attend to environmental noises. I prefer to take a quieter approach to the day. The last few days were filled with adrenaline in my body. I am relieved for the quiet state that my body is recovering in.

Tuesday, January 17, 2006

Two days - LIVE!

It has been quite a ride. I don’t even know where to start. Although I did some research, nothing had prepared me for the initial turn-on of the CI. I had a panic emotion when the sounds swirled in like helium from the computer database into the processor on my ear. I protested at the utter strangeness of the sounds with "I don't like it!"

These are the highlights:

A. I am having the most SURREAL experience. I think I have landed on Mars! It is indescribable. Good news is I am adapting quickly. My body is really reacting but I am making sense of WORDS (w/ lip-reading).
B. I popped popcorn and that sounded familiar, but with richness. I heard rain go plop plop on the roof or tit tit tit tit tit, not a blurry shhhhhhhhh. It is so defined. Enviromental sounds are increasingly ALIVE. All the while, I still get these weird body reactions. A "slow SHOCK" is about the best I can describe it.
C. The quiet is too noisy - I can't make sense of it. Noise jumps at me in quiet spaces. I can’t find it and am confused whether it is real noise or head noise. I do find solace on the street and let the city noise drown itself out.
D. I heard wet rubber soled sneakers walk by in the hospital hall. Now that was comical!
E. I have been listening to music constantly in the car on my commute. I am recognizing some tune and lyric distinction although parts are like fingernails on chalkboard. It can be grating and takes a LOT of perseverance.
F. I had an audiogram test to confirm my residual hearing was not lost post-implantation. This was proven true.
G. The first time I heard the toilet flush it sounded like Niagara Falls!
H. Kirsti offered me her MP3 player to try out with a head set and I can hear on it with the microphone. The doctor told me today that some recipients feel they don’t need the T-coil. This is encouraging as I've never done without a t-coil in the past.
I. Sometimes I had a hard time speaking.. my voice would echo or boom inside me. I often shared that I prefer to be quiet and just observe, to listen and be attentive.

I would say these two days have been overwhelming and requires perseverance. Tomorrow is another day at the hospital hooked up to the computer with the processor for some more fine tuning. I have clocked in 12 hours time with the audiologist and am grateful that he is able to spend lengthy sessions with me in patience.

Friday, January 13, 2006

I am back to wearing two hearing aids

I wore my hearing aid on the left side for a month while the implant insertion healed in the right ear. Earlier this week, as I was contemplating my eldest performing a lead role in an upcoming school play, I moped in the idea I would only hear on the aided side and miss more of her special moments. I decided to try the hearing aid in the implanted ear. I played a CD that I was very familar with and became enchanted that I could enjoy it like I used to many years ago. I watched some t.v. and noticed the words did not appear to be running together and that there was more pitch and variety in the sounds. I have not spent another waking moment without both aids ever since. I am sure I am hearing almost as well as I was 10 years ago. The 's' sounds have returned. There is no monotone in my hearing. There is no question IF I couldnt wear the CI, I can go back to the hearing aids. These couple of days I have talked on the phone to three people I am closest to and have had no trouble understanding. My special phone is designed to benefit me - I have a dual headset with a special amplifier and the volume is L-O-U-D. My confidence on the phone has returned - at least with familiar voices for now.

I think I am doing myself a benefit wearing the aid in the implanted side, as the nerve is once again active and I hope I adjust quickly to the activation moment on Monday. My biggest question is: WILL I understand WITHOUT lipreading? As I watched Lauren's performance, I did not understand anything but I could hear it. I began to comprehend that the sound traveling through my forever-damaged ears are what keeps me from deciphering words properly. The miracle of the cochlear implant is its ability to bypass the damaged part of the ear and process information directly with the auditory nerve. Apparently I might be able to distinguish voice from noise. It takes time and practice.

Yesterday morning my mother had hip replacement surgery. It was also her 76th birthday and she had quite a party - before her operation commenced, the O.R. team gathered around her and sang a rousing rendition of Happy Birthday! The doctor then gave her a '2 and a half pound weight' as a gift. This morning I picked up the phone and gave a call to her hospital room. I was delighted to connect with her voice, although very soft, and it was a miracle to be able to understand her in her groggy state! I heard her inform someone (in a sideways tone) that she was talking to her daughter in canada and would soon be saying goodbye. A soft and joyful tear ran down my cheek as it has been a long time since I had confidence to hear using the phone, especially to engage with my mom who is many miles away on a hospital bed.

Three more days to go and when I am ready for switch on, the hearing aids need to be put away. I must ask the girls to hide them from me - my audiologist tells me the brain needs T-I-M-E to learn the sounds off the processor. He suggested I give one or two months using the CI processor alone. This enables the brain a chance to switch-over and submit to the improved quality sound that the CI provides. In a month, when I try the hearing aid in the unimplanted ear, I may discover that the hearing aid sounds junky compared to the CI and decide to go without it. Every CI recipient has a different experience with a hearing aid in addition to the CI. Sometimes it supports their CI, enabling more directional support, sometimes it doesnt.

Wish me luck. I am more than excited although trying to be prepared for what could sound awful on Monday.

Sunday, January 08, 2006

Its one week before activation day

This is the week leading up to my activation day. In other words, "the switch on" is soon to occur. On January 16th I will return to the hospital where I will be presented with my new processor that looks like a behind-the-ear hearing aid. The processor will rest behind my ear. On the processor is a short wire followed by a magnetic transmitter that will attach itself to the skull above my ear. The whole of two units (inner and outer) are in place and ready for switch-on. The audiologist will begin approximately two hours of programming into the computer. Somewhere along the way, it will be hooked up to my new device and activated. I am told I may hear noise, what possibly may sound like helium. I may hear static, or I may understand a word, possibly Mickey Mouse style. The Audiologist will talk to me, as well as others who are there to accompany me. I may not understand any words without lipreading. With time, it should improve. It takes hard work and practice. Each experience is unique for the CI user. I suspect my ear will go through an adjustment (and possibly an ordeal) after a period of hibernation. The audiologist has made a plan that I will return on the immediate days following the activation for re-adjustment or a boost in volume as the brain adjusts within 24 hours and is ready for improvements.

Since surgery, my right ear canal has now been liberated from a lifetime of wearing an earmold! It has been exposed in unexpected ways. The most significant is one of air moving into my ear. In the bitter cold it feels barren and unprotected. It protests with an mild ache. For 43years, my earmold had been an insulation of warmth day after day, sporadically bringing raw sores or infection from bacteria buildup. Sometimes the ear wax or moisture clogs the tube in the mold. That is now "No More!" as I will not require an earmold for the processor to work. The path of sound will not travel in the ear canal as before, but rather it will go through the external processor, up to the transmitter on my skull, activated by the computer chip with an array into the cochlea to (finally) where the auditory nerve sends messages to the brain. This will bypass all the damaged parts of the ear, (in my case, the cochlea with its weakened or missing scilia, also known as hair cells, that are responsible for sending information by soundwave to the auditory nerve.)

How timely it is that I have learned to knit hats in recent months and now wear my first couple of hats to protect my 'new ear.'

I am still experiencing new sounds traveling into the ear and tell myself I've had a "CI moment" but I thought "CI moments" were supposed to happen after its been activated with the processor. I am delighted by the residual hearing that I have in the operated ear and am quite alarmed that it is louder than I've ever known it to be. Yesterday's weather brought a downpour of rain. As I opened the front door to go somewhere, I was swept by the sound in my right ear; I heard the rain pelting down! I turned off the hearing aid. I closed and opened the door. I heard the difference in the unaided ear. In the car I was touched with emotion hearing the rain fall on the car. I anticipate that I will hear a fuller sound with my processor.

At the preschool where I work, I could hear the squeals or cries from the children, the musical bells that the children rang, a wooden rolling pin fall onto the hard floor. Wearing the hearing aid on the other ear was somewhat a nuisance because it is amplified noise and does not balance out sound when worn alone. I did better with it turned down a notch. As it is the first week back at work, I was overwhelmed by the one aided experience and felt exhausted at the end of each day.

I heard my daughter drop an item many feet away while we were shopping in Safeway. That was a surprise as it gave me a sensation of depth in hearing, rather than amplification. In the following moments, I realized in my aided ear, I am only hearing noise, likely a mix of refrigeration, fans and fluorescent noise. On the other side of my head, a slumbering quiet interrupted by a crash to which I turned towards and saw my daughter picking up the product off the floor.With hearing aids, there is too much going into my aids and I cannot distinguish the different sounds.

I wrote to my audiologist asking about my enhanced residual hearing. He prompted me several times in the past to be prepared that I would likely lose all residual hearing as a result of cochlear implant insertion. Upon hearing my experience, he states:

My interpretation is that your surgery was relatively atraumatic (i.e., un-traumatic to your cochlea). In other words, the surgery caused relatively little damage to the remaining structures in the cochlea (which is good!). Sometimes, when there is residual hearing after the surgery, the hearing at some frequencies is actually a little better than it was before surgery. This is probably due to a part of the electrode touching the basilar membrane, and causing some changes in the properties of the traveling wave, or the hydromechanics of the movements in the cochlea. It is my guess that the initial part of the traveling wave, between the oval window and the region where an electrode is touching the membrane, may be amplified, or increased in amplitude. Not sure if that makes any sense to you. Easier to explain in person, with a diagram. At any rate, it all sounds favorable.

Wednesday, December 28, 2005

My residual hearing

On Christmas Eve, 13 days post-surgery, while embracing my sister in greeting she said in a high voice "Hiii-eee" (unsuspecting) into my right implanted ear that is not yet activated. I suddenly lurched backwards, covering my ear in astonishment, as if to prevent it from being disturbed during hibernation. I remarked with surprise, "I heard that!" It is not her familiar voice that I knew through my hearing aid. The sound was a less-than-pleasant inaudible shrill. I asked her to repeat in my ear what she said but because she was aware I was in the 'healing' phase, she hesitated to bring her voice back to the high treble. I did hear her a second time.

Since then, I have been aware that I can hear glasses tinkling as well as silverware dropping down on plates, I even heard an echo of an empty plastic water bottle that fell over onto a hollow surface. My daughters have laughed into my ear and I was able to pick up parts of their gleeful outburst. My daughter, who plays piano, tapped forcefully across the keyboard and as I stood near the strings, I was able to hear only the highest F and G with the implanted (and unactivated) ear. It is an inaudible high pitch, but by nature I am moved to curiosity when I hear anything with or without support. Interesting to me is that without any hearing devices, I am hearing better on the implanted side. Using the hairdryer that I've used for years now sounds noisier to me. I have to remind myself that the implant has not yet been activated, if only one frequency at a time because it seems that way. It is as if the surgeon unglued a couple of haircells in the cochlea and they are dancing again to the long-lost frequency. I will inquire about this curious phenomenon.

All this to say my CI friend Laurie reminds me with a smile that I may "still have residual hearing left but it isn't worth much! Just wait until activation day."

Within the last twelve hours I have been able to locate the implanted computer chip embedded on the skull. The swelling has now gone down. I find myself in a mild sense of awe as I stroke this foreign object under the skin. I can now anticipate where the magnetic transmitter will attach to my head.

It is 17 days since the surgery. The dizziness has abated. The tinititus comes and goes, but it has been a welcome sound, fitting for this Christmas season. I call it the Christmas Bells. I am feeling great and will attempt a walk today. Time does heal, that is for sure.

Sunday, December 18, 2005

Traveling today..

Today is the start of our 6 hour travel to Moms. I am feeling alright today. I have opted not to drive as I am experiencing some dizzyness and fatigue. I still have some swelling on the side of the head. I awoke this morning with my implanted side on the pillow and realized I was no longer uncomfortable in that sleeping position. I am feeling a bit more aware and on the upward in spirits. I am looking forward to the restful ride down. It looks like it will be a beautiful day. If all goes well we will swing by an open house that my sister and brother-in-law are having.

Last night (Saturday) was my first outing besides the post-operation follow up on Friday. Mark treated Mom and I to dinner and after some thinking to where I should sit using the benefit of my hearing aid (which I am wearing on the opposite ear) and lighting, I was fairly comfortable and we had a lovely time.

Friday, December 16, 2005

No more bandage, no more tape

Ive had a couple of miserable days. The medication I was taking was making me spacey and was giving me nightmarish sleep. My neck was stiff. My body was worn out. This morning I went to the doctor for my post-surgery follow-up. He removed the surgical tape with ease and told me it looked great. I was not able to find the implanted device and he located it for me. My head is still swollen and he said I would be able to feel it once I was healed. Then it was on to the Audiologist. He showed me on the computer that my array is 100% perfect. Activation date is Monday, January 16th, 2006 at 9 in the morning.

As I write, I am feeling much better. I hope the misery days are behind me. I'm thrilled with the looks of the incision. I am surprised how quickly it has healed. Quite amazing, it has been 4 days since I was in the operating room. All we can see are the two ends of the incision.

Thursday, December 15, 2005

The headband came off Tuesday

The new headband I got at the hospital remained on my head overnight. It is called a pressure bandage, to keep pressure on the wound to stop the bleeding. By Tuesday afternoon it had given me a headache. The bandage had to come off!

In slow anticipation I began the unveiling of the bandage with my mom as witness. To my surprise she was eager with picture taking - taking step by step photos. At the end of it all we found an intact ear with an incision behind it.

Monday, December 12, 2005

Implant Day..

I am happy and well and at home. I was at St. Pauls from 11 to 8pm today. I was in the operating room shortly after one and I was "down under" (no pun intended) at 1:20 pm. Surgery was over by 3:45. While unconscious, the audiologist had checked the CI and found it in place perfectly. I have been groggy and alert off and on. Once home my dear mom made the most delicious prisoner's soup. Half way through the bowl I fell asleep.I awoke again an half hour later and finished it all up. I can be dopey one moment and alert the next.

Thank you to ALL of my family AND friends/co-workers, old and new, for your kind words of wisdom and encouragment in your email, phone calls, comments and prayers. Thank you to a fellow CI recipient, Shirley, for dropping in on your way to your mapping and giving me ease and encouragement just when I was getting anxious. Thank you Lauren, Kirsti and Alan for the lovely bouquet of flowers that were awaiting me when I got home. Thank you Bruce and Suzette for the very generous gift to which I place these photo memories. Thank you Mom for your beautiful love and care. Thank you Mark for the lovely gift, genuine companionship and love. I love you all. I am grateful to the kind staff, audiologist and surgeon at St. Pauls Hospital for their great care.

I made a couple of attempts to add pictures to this blog to reassure you I am fine and to show off my new hairdo. The computer is freezing, or perhaps it is my brain that is freezing. I will try again tomorrow. For now, I will attempt sleep with the pressure bandage that is wrapped around my head.

Friday, December 09, 2005

The week before the implant

I have been attentive to what I hear with my hearing aids. I have also been down with a cold virus and that may contribute to a further decrease in sound. I attended my daughters Christmas Band concert at their high school and could recall in the past the ability to hear bell sounds. Christmas music is familar to me, as I spent year after year looking forward to hearing the joy in the music. I have no clarity in my hearing now. The concert was a humble experience for me.I delighted in my children being there - they are playing music on the same night for the first time - as the youngest has now entered high school. My daughters were playing the Bass Clarinet and Alto Sax and I noticed that I didnt tap my feet to the beat.. I dont know where the beat is anymore. My interest in music has decreased for a few years and I really miss the joy I feel from the music. Often, in the car, I turn the radio on only to turn it off quickly as it sounds more like annoying noise - little makes sense. I have a few songs on dvd that I will play again and again if only to work at my listening skills, but I dont feel the intensity in the beat or tune. They are from Bad English (John Waite), and Bon Jovi, two of my favorites that I played passionately as early as five years ago.

My audiologist at the hospital had a look at five or six audiograms that I'd pulled out for him. My earliest one is at three years of age and he told me this week that he is optimistic for me - I would likely do well with the implant. When I see him in the hospital I would like him to explain his response further. There have been changes over the years, I was quite unaware at the extent of it when I looked at them side by side this week. Once I am activated with the CI, I plan to share the before and after results of my audiogram on my blog.

Today my mom arrives with the intent that when she gets here, she says I am going to have a nap. Obviously she senses I am not sleeping well. Are my words not coming out clearly?

You will find my history in growing up with hearing loss in the Links column. Click on it and you are there. All week my feelings and I swam in a mix of excitement and anxiety. I feel flat today - I think it has been an emotional month and I am tired now. My CI surgery is at 1pm on Monday. I have been told not to eat or drink anything after midnight the night before. That is a toughie. I will be put under for the two hour surgery, and expect to awake in the middle of the afternoon. My friends who have the implant assure me it is all not a big deal. I hope they are right.

Saturday, December 03, 2005

the emerging journey

The heart swells as this journey emerges. I need to play down my expectations of the implant. This week, as I get ready for surgery (9 days to go), I have been in a frenzy researching peoples experiences with the CI, particularily from prelingually deaf people like myself. Over the years I have always been curious about cochlear implantation and would seek out information from the recipients, but right now the nervous energy is raging inside me and I seek to suppress it through the encouraged and experienced eyes (or ears??) of the implanted and activated people.

The feedback I get has been amazing. I have joined a forum provided by http://www.cochlear.com/ (the company for which product I will be implanted. At present, BC will only implant from Cochlear.) The experiences shared in the forum have been far and wide, ranging from personal struggle, to success. The most encouraging thing to me is I have not sensed any sign of defeat. No one seems to regret having the CI. I am thankful for the ongoing advice and encouragement I get, ranging from family and friends, the professionals involved, to the recipients themselves. Another audiologist from my hometown in Portland, OR, who is now selling cochlear implants wrote to me upon hearing of my surgery date. She and I go 20+ years back, as we worked at the same oral school and because I know and trust her, her insight is vital to me. It is her kind but realistic words that ring in the back of my mind that bring me down to a reality check as I feel overwhelmed with excitement and expectations are running high..

She shares: …it is never as easy as others may paint and you have lots of work to do to make the most of this technology. I admire you for the decision you have made and support you in any way I can as you work toward success with the sound that is not like anything you have heard before. I wish for patience for you and a feeling of joy with even the smallest of steps.

Thursday, December 01, 2005

Thoughts from my daughters...

My sister asked the question to my two girls: How do you feel about your mother getting the cochlear implant? This is their response, directed at me...

K (Age 13): Its going to be different. You’re not going to be able to hear for a month, (post surgery, recovery time before "switch-on") you’ll be hearing a lot of sounds you’ve probably never heard before, and it’s probably going to be frustrating and overwhelming for you. So, Lauren and I are going to have to help you out. I’m kind of nervous, but I’m also really excited for you. This is a big change and hopefully it will be for the best.

L (Age 16):I hope its going to be a lot easier for you. For instance, in the car, etc. Its going to be different and difficult for a while. But in the end, I hope its going to be worth it. It will be interesting to see what this new technology does and how it changes your perspective. I’ll be calling you the “Bionic Mom” or at least the bionic ear, now.

Counting down.. 11 days left

My new blog IS set up! It feels like a significant moment, one of many in recent days. 10 days ago I was approached by the director of the CI team asking if I would accept a CI surgical date for the coming weeks. My mind spun with anxiety: Do I want it NOW? Will it be worth it? After a year or more struggling with my new digital hearing aids, I decided it was time to start the year 2006 with something different. The CI was the best possible answer for me. I had nothing to lose and everything to gain. I am in hesitant anticipation because as the cochlea is invaded by the surgical procedure, I cannot change my mind and "go back" to my hearing aid. I have nothing to fall back on with regards to my residual hearing. There is hardly any hearing left, but I value what I do hear. I grew up passionate about sound. My parents, steadfast at getting the best hearing aid for me, persisted at every opportunity for me to hear sound and enjoy it. There are endless stories to share in this experience, past, and present. The term, "hearing aid" has been a part of my daily language for all of my life, and now I add the terms, "CI", "cochlear implant", or "my processor" to my vocabulary. A lot like when you bring a computer into your home for the very first time, all of a sudden you are aware of computer jargon: a "mouse" in your home, a "tower", "desktop" or a "URL".

A New Reality

I am about to have a new reality. After a lifetime living with a sensorineural bilateral profound hearing loss, I will soon allow science and technology to take over. On Dec 12th, I will put my life in the hands of a doctor who will insert a computer chip with a cable running into the part of my inner ear, specifically the cochlea. It is the part of the ear that looks like a snail. It is called a cochlear implant, aka "CI."