Category Archives: My Cochlear Implant Journey

Last week I received a new processor for my cochlear implant. The processor is the tiny computer that translates sounds in the environment to a code. The electrodes in my implant use this code to send a message to my brain that I have heard the sound. I must admit that I have a difficult time believing I have had this marvelous invention for only three years. It seems like a lifetime and I can hardly remember what life was like before my cochlear implant.

There are still challenges, especially when I can’t read a speaker’s lips, but they are far outweighed by the experiences that now go in my ‘life-half-full’ glass. My new processor includes a special receiver that connects both my hearing aid and implant with the personal FM that I wear in groups to boost the sound. So I am now hearing in stereo! Just two days after receiving this new processor, I attended a special music concert at church. I was amazed at how much better the music was this time, even more than that first time I experienced music with my implant at the Symphony, some eighteen months ago. I could hear very soft sounds distinctly. It’s really quite something.

The percussionist who provided some of these soft sounds sat up very tall in his seat and hid the speaker’s head from the pulpit. I tried to lean across him so that I could see the speaker’s lips, but was almost in my seat mate’s lap! So I missed hearing most of what the speaker said. There was a short video about Advent and an explanation in a child’s voice about the first candle of hope. I was able to get the gist of the message but unable to hear it all. It would have been nice to have had the video captioned so I could read what she said. My local newspaper, like many, has an extensive catalogue of videos on its webpage. But much to my dismay, none of the videos are captioned. I had a good talk with the customer rep and she thinks it’s an idea whose time has come. Hopefully I will be able to hear some of my favorite columnists sometime in the future. We’ll see.

And while my implant has improved my life in immeasurable ways, I still experience trepidation in any waiting room wondering if I will hear my name being called. This is a very common concern for anyone with a hearing loss. Even though we do hear our name above all other sounds, the anxiety of missing is always there, especially when there is more than one door where the person is calling from. I was in such a waiting room just last week. It took me a while to realize that those calling out the names were coming from an entrance behind me. Oh dear – did I miss? I quickly moved so I would be in the line of sight of this door and was able to see the person mouthing my name when I was eventually called. Whew.

So glass half empty or half full? No question – entirely full. A very good friend of mine told me the other day how much she admired how I had dealt with the many challenges of deafness over the years. To me, they aren’t really challenges, just steps along the way, even if they are sometimes one step forward and two steps back. I can now experience so much more. All in all, the challenges are pretty inconsequential when I can hear that beautiful music.

Those of you who are regular readers of my blog know about my struggles to hear music. While I could hear simple one-note tunes fairly early on, the more complex music of a symphony was beyond my reach. Until now.

Last week I attended a concert that featured among other pieces, Beethoven’s Piano Concerto No. 3 in C Minor, Op. 37. For those of you unfamiliar with this particular piece, the pianist’s fingers are literally flying over the keys for much of it. I heard every note.

There was still a Darth Vaderish quality to the lowest registers and I could not pick up the pizzicato of the violins, but the last time I can remember hearing so much, so clearly would have been at least 40 years ago. And I think the sound is actually clearer now.

It IS the implant that is making the difference here. A couple of times during the concert I took off my cochlear implant processor so I could get a sense of what I was hearing with just my hearing aid alone. It was very little and very soft. When I put the processor back on, the sound not only increased tenfold but it was MUSIC I was hearing in both ears, not noise. Stereophonic sound! This was no fluke.

And how appropriate that my re-introduction to music was a piece by Beethoven.

When I was four years old, a few months before I became deaf, I was at a Christmas party. The Master of Ceremonies asked if any of us knew the words to a brand new holiday song called Rudolph the Red Nose Reindeer. I put up my hand and was invited up to the stage. Someone put red lipstick on my nose and, with what I imagined to be a full band behind me [likely a piano and possibly a double bass], I sang the song. That was a seminal moment in my very young life as I realized how much I enjoyed performing. The concert last week was another.

I have one more task – feeling confident using my implant on the phone – and that will take some time yet. But my “cochlear implant expectation check list” is almost complete, so this will be the final entry of my cochlear implant journey, almost two years after I received this amazing device.

I still plan to offer thoughts on hearing loss issues from time to time and of course would enjoy hearing and publishing your stories on my blog so please do send them along to me. In the meantime, I am going to go listen to some music!

But to paraphrase that Rolling Stones oldie, you just might find out that you get what you need.

One of the biggest challenges for me is music. I have written in this blog on several occasions about my experiences hearing music with my implant. I could hear the true notes of simple tunes like Twinkle Twinkle Little Star with a week or so of practicing but a complex piece of music sung by a choir still sounds very Darth Vader-like.

So when my audiologist asked if I would like to participate in a research project for music therapy, I jumped at the chance. Here was the opportunity I was waiting for. I would devote 30 minutes every day for a month listening to and trying to identify specific musical sounds. It would be a great success and I would start to enjoy music once again.

Ah. It did not quite happen that way. Let me tell you a bit about the therapy itself. The patterns are atonal so you cannot easily memorize them. And as with all learning, they become more difficult as you go through the sections – nine in all, with several tasks in each one. For each task, you are presented with two patterns, each slightly different and played within a larger selection of music. The test is to identify when you hear one of the two patterns. Seemed easy enough. Not!

For one thing, the notes I heard with my implant did not always correspond with the placement of the notes on the screen. I know music. Before I lost most of my hearing, I played piano and violin and sang in the choir and glee club. I can read music and my brain still retains the musical memory so I know what it should sound like. The patterns in this therapy program appeared as notes on a staff (well, a seven line one) and I could hear in my mind what the sound should be. What I actually heard surprised me. In many cases instead of hearing notes that on the computer screen went up the scale, I heard them going down or vice versa. Very odd.

Eventually after much practice, I was able to hear some of the patterns as they should sound but there were still several that defeated me, so I just listened for what I actually heard rather than what I thought I should hear and was able to move through the sections reasonably quickly.

Then I hit section nine, the final section. Two weeks into my therapy month I hit section nine, task one. At the end of the month I was still on section nine, task one! I just could not get enough correct answers to move forward and the program doesn’t allow you to skip. I made sure I had a glass of wine at the ready each day after I finished the required half-hour. I would check the clock and stop at precisely 30 minutes. It was extremely frustrating, but I finally completed the requisite four weeks this past weekend and on Tuesday went back for my post test.

When I had my initial appointment a month ago, I was told that the researchers were finding that this therapy had a positive side effect.There may be a connection between music and speech. Many participants discovered that their ability to understand speech improved over the month. And my test results showed that as well. My ability to understand bits of speech in a noisy environment almost doubled from the first test a month ago.

A couple of weeks ago I was at a meeting of about 20 people. I was trying out a new personal F/M system that augments the sounds I get from my hearing-aided left ear and decided to sit at the back of the room for this meeting just to see how good the F/M was. I have NEVER sat at the back of the room for anything. I was always placed at the front in school and while I heard the teacher when she faced me, never got the benefit of being one of the ‘disruptive kids’ who had so much more fun in the back. Well, I heard just about everything at this meeting. My new F/M undoubtedly helped but I have a feeling that the dreaded section nine, task one played a key role as well.

I need to understand speech better. The more I understand, the less tired I am and the more I can participate in life. I can still hear some music with my hearing-aided ear even if I can’t get the full power and scope. So while it was a drag at the time, I really did get what I needed from this therapy.

And a PS. I saw a different researcher for my post test. She explained that cochlear implants are designed for speech, not music and music involves a totally different signal. There is rhythm, there are dynamics but most especially there is pitch. Speech generally covers a frequency range from 250 to 8,000 hertz. Music goes up to 16,000 hertz. Clearly there are some missing pieces and this helps to explain why I hear a range of notes that go down when the screen tells me they are going up. The brain is not getting the right signal and cannot accurately process what it hears. The research continues.

A year ago today my cochlear implant was activated and I began my journey to hear again. While preparing for this anniversary edition I read through the early posts and I am amazed at how far I have come. I had my first annual hearing test with the implant just a week ago to see how much I am actually hearing with my implant alone and with my implant and hearing aid together. Prior to being approved for the implant two years ago I took a number of tests, most particularly one that tests your ability to hear sentences over cocktail party noises. That time I got one right. This time I managed to get about half of them right with just my implant. That is the proof of the pudding. Now these tests are in a controlled environment; the speakers enunciate clearly; and the noise level is not that loud so I can’t compare this with real life. Still from a success rate of 2% to nearly 50% tells me that my implant is working pretty well!

During those first few weeks after the implant was activated I practiced hearing words without reading lips. Now I can manage a telephone conversation of 30 minutes or more using my implant. Granted, my conversations are only with people whose voices I can easily understand. The sound is scratchy and not always clear but I can hear pretty much everything. And they are real conversations, gossip and all.

But the other more telling proof for me in some ways is that I can hear the phone ringing from other rooms and other floors in the house just with my implant alone. Before I received the implant and using only my hearing aid, I could not hear the phone ring unless I was in the same room. The same for people knocking on my front door. Pre-implant when I was expecting someone, such as a repair person or neighbour, I had to sit in the living room close to the door because otherwise I wouldn’t hear them knock. Now I can hear the knock from just about anywhere in my house.

Some other firsts:

This past weekend I watched a bit of the Davis Cup with friends. The volume was not loud enough for me to hear what the commentators were actually saying but I heard the thwack of the tennis ball – first time for that.

As a passenger in the front seat of the car, I carried on a conversation with the person in the back seat. It was dark and I could not lip read. This has not happened for many, many years – perhaps even before I lost my hearing some sixty years ago. It doesn’t happen every time. It depends on the speaker’s voice and the environmental sounds inside and outside the car. But it was an amazing breakthrough for me.

I still have challenges hearing in groups but I’m convinced that will improve over time. I have started a new computer therapy program (see note below) that involves trying to lip read a speaker against a lot of background noise. This program boasts up to a 40% increase over the period of a year in a person’s ability to understand speech in noisy environments. We’ll see!

Others have remarked on how much more relaxed I appear. The worry lines and stress caused by straining to hear what was going on that showed up on my face seemed to dissipate as the year progressed. Perhaps I was even looking younger! And my dentist, who hadn’t seen me for six months thought my pronunciation was crisper. That makes sense to me. If I can hear myself better, I can also correct my own speech automatically.

During my first year review last week with the audiologist, as she was testing the implant’s processor I kept hearing a swishing sound. I thought there was something wrong with the processor so I mentioned it to her the next time I heard this sound. What I was hearing was the pneumatic sound of a door closing down the hall. This was a brand new sound for me.

A month or so ago, I was working in my office, windows open to catch the summer breezes. I kept hearing sounds that would last for several seconds, then stop for a second, then start again. Now I should tell you that I live in an old house so assumed at first that these sounds were ‘house sounds’. I decided to walk around the house to try to figure out what the sounds were. At one point I looked outside. What I was hearing were voices of some people on the sidewalk. I couldn’t distinguish what they were saying but I heard them.

Until recently when at a restaurant, I always looked for the seat against a wall to muffle the background sounds behind me, allowing me to concentrate on the voices in front of me. Now, as long as I can see the faces for lip reading (and that usually means 4-5 people), it doesn’t much matter where I sit.

Music has been a major challenge because it is such a complex auditory process. I could hear individual notes fairly early on with my implant but not a more intricate piece of music. About six months ago I listened to the choir at church singing an anthem using just my implant and did not hear ANY music at all. All I heard were the voices speaking – sort of like a Greek chorus. This past Sunday I tried it again and actually heard some musical sounds. The sounds were an octave lower than normal and were similar to the buzzing noise from the day my implant was activated – just like they were when I first tried to hear individual musical notes. But I could hear differences in tone and could tell higher notes from lower. I must admit I did not have a lot of hope that I could hear music with my implant. I worried when I lose the hearing in my better ear and would need to rely solely on my implant, music would be lost to me. Now I know that won’t happen. It may take another year or even longer, but I will hear music.

There were so many firsts this past year. Some sounds are still robotic and unclear. The implant is loud and my brain is still working on filtering out extraneous sounds. At the moment, blasts from a noisy room still create hearing challenges and the fatigue that follows straining to hear and understand. But it is eons from a year ago when I found it challenging to understand just a few words in a quiet environment.

The day before my surgery last year I wrote a very short post on my blog about the sound I was most looking forward to hearing once my implant was working. It was the call of the loon. While I have not been near a loon to test this out, I have no doubt that I could hear it now.

I have discovered that keeping things in perspective is an important component of success with cochlear implants. The other day a retired teacher of the deaf, on learning that I was approaching my first anniversary with the implant said, “Oh, it is still very new for you.” I realized that a year is just the beginning and I have many more successes to look forward to. Stay tuned!

NOTE: Some of you have been asking about the computer program that helps with background noise. It is called Read My Quips and you can find out more at http://www.sensesynergy.com

I have not posted anything on my blog for a month and there is a good reason for that. I have been ill and had to take some pretty heavy duty pain killers for about three weeks or so. Taking these pills resulted in two things. First, I slept – a lot! And when you sleep, you don’t wear any of the external parts of your implant so I wasn’t getting the usual sound stimulation. And secondly my brain pretty much turned to mush so I also wasn’t thinking very well. In fact a couple of weeks ago I composed a very brief email to one of my clients and had to re-write it three times so it would make sense! A posting was not in the cards.

I’m fine now but have noticed that being without my external processor for so long has resulted in my going backwards a bit. I’m not hearing as well as I was before. Some of this is due to the normal fatigue that comes with illness, but the main reason I think is that my brain is out of practice.

So a couple of lessons for me. One, my audiologist is right – I do need to wear the external processor from the moment I get up to the moment I go to sleep. I generally do this but there are times when I really want to cut out the noises of life. Even though it is sometimes a relief to be in a totally silent world, it is not a good idea.

Another lesson for me – and this is a bigger one I think – is that the progress I have made in my ability to hear and understand sound over the past eight months is perceptible, even when I haven’t thought it was. The fact that I noticed a reduction in my progress from not wearing the processor for a few weeks actually tells me that I am aware of what I have accomplished. I do hope this makes sense! This is an important lesson for me at this stage of my development with the implant because the progress I make now is tiny and not always truly noticeable. So even when I feel I am not moving ahead, I actually am. My brain is getting better all the time at interpreting sound.

To add proof to this particular pudding, this morning in church, urged on by one of my friends, I decided to ‘test’ my ability to hear complex music with just the implant. To backtrack a bit, last December I tried this test for the first time. At that stage in my development, I was able to distinguish individual notes but not the complex sounds of a choral piece. While the choir was singing the anthem last December, I took out my hearing aid (which does allow me to hear some music) and just listened with my cochlear implant. There was no musical sound at all. All I heard was the choir speaking words. It actually reminded me of a Greek chorus because there was a cadence to the words. But no music. This morning when I tried the test again, I heard a little of the music the choir was singing. Tiny steps.

The other day someone asked me what is the best sound I have heard so far with my implant and what is the worst. This is a very interesting question and I had to think about my answer.

The challenge I have is that I can hear using my left, non-implanted ear and a very strong hearing aid. So there are sounds that I hear with my hearing aid that I like (voices of family and friends for example) and some that I don’t (the beeping sound of a truck backing up). But new sounds with my implant? Hmm.

It is raining quite hard today. I tend to wear just the processor for my right implanted ear rather than the processor plus my hearing aid whenever I can to help my brain practice listening for sounds and I hear the rain pounding. I also hear the seconds tick by on a very old wall clock in my office. Neither sound is particularly appealing to me but they are sounds I could not hear before with just my hearing aid. Are they the worst? No, I don’t think so.

I have talked in this blog about my struggles with music and certainly hearing all the notes independently when I dusted the piano a few months ago is right up there with the best.

The truth is that there were so many sounds that I did not hear – either at all or not very well – before my implant that pretty much every sound now is the best and there are none I can really call the worst, at least not yet.

I am still waiting to hear music in stereo with both my ears. And of course the sound of the loon, my particular personal goal. Ask me a year from now and I’ll bet I have a more definite answer.