Cash, granola and more as a cochlear-research subject

I don’t mind being a guinea pig. In the two-plus years since I received my cochlear implant, I have volunteered to be the subject for a variety of research into hearing and related technology.

On a hot summer’s day during the 2020 lockdown, I got a new request by email:

Good Morning Ian,

My name is Emmanuel Chan, not sure if you remember me, but I am a research assistant from the Cochlear implant lab at Sunnybrook Health Sciences Center.

I remember you well, Emmanuel, I thought. The last time we met, you used a gooey gel to attach about 50 electrodes to my scalp and made me listen to musical duets. How could I forget? I was frustrated that it was so hard to distinguish between the sound of different classical instruments playing simultaneously.

Ian with electrodes

“We are not amused”

But you had a great attitude, explained everything carefully, and at the end of the session, you gave me some shampoo to wash my hair, a granola bar, a parking pass, and twenty bucks. You were doing important work to help cochlear implant recipients. I drove away from the hospital parking lot in my minivan with a smile on my face.

Maybe this guinea pig could help other people who share my journey.

Hearing and quality of life

Emmanuel continued his latest e-message: I am emailing you to let you know about an opportunity to participate in research with us. As a reminder, our lab focuses on cochlear implant populations, investigating a variety of aspects including cognition, perception as well as quality of life.​

At the moment, we are conducting some online tests investigating speech perception and the quality of life of people living with, and without cochlear implant(s). This data in turn will be used by clinicians to optimize rehabilitation for patients with cochlear implant(s). There will be a total of 4 online questionnaires and 1 online speech test. The questionnaires and speech test should take a total of 30 minutes to complete.

Aha — optimizing rehab for patients with cochlear implants. That is one area where I could have used more help a couple of years ago. I had done homework to get used to my hearing system, using programs such as Speech Banana, but felt bewildered by all of the potential programs and technologies. I sometimes wished I had a hearing-rehab guardian angel.

Cash and granola bars

So I replied by email: “Thanks Emmanuel, I should be able to get to it this week.  Will keep you posted. In addition to the $20, I would not turn down a granola bar, like the one you gave me last time.  (:”

Emmanuel sealed the deal:

Hey, your participation is very much appreciated. And if I am around the next time you are in the clinic, feel free to stop by for a snack, haha.

Best,

Emmanuel Chan
Research Assistant
Department of Otolaryngology
Sunnybrook Health Sciences Centre

Emmanuel provided links to the online questionnaires and speech test.

I sat down with my laptop to tackle the first two questionnaires. One focused on elements of sound such as speech, environmental sounds, and qualities of hearing. The second looked at the quality of life for a person who has a cochlear implant and/or hearing aid.

I was providing answers using a sliding scale, or multiple choice, that would hopefully help the research group identify trends and issues around cochlear implant rehab. At the same time, a few of the questions got me thinking. So I decided to answer them in my own words:

You are in a group of five people, sitting around a table in a quiet place. You can see everyone. Can you follow the conversation?

This question took me back to the feeling of dread that would creep up as I walked into our small team meeting at the office a few years ago. Over time, as my hearing worsened, I began to “lose” certain colleagues who spoke softly or quickly.  When my hearing was at its worst, it took all of my energy just to focus on our director. I would sit across the table from her to ensure I got the key messages, and any take-aways. My manager was aware of the problem and would often sit next to me to help out if I missed something. The workarounds helped, but I was no longer fully part of the give-and-take discussion of the team. It felt more like survival.

Today, with new hearing technology including my cochlear device, I have more confidence in a small group. Besides just functioning, I can enjoy the people, personalities, humour, banter. Hopefully, I can engage and contribute. It’s not perfect. My hearing sometimes gets overwhelmed by too many voices, and I have to ask somebody to repeat themselves. But that’s a good problem to have compared to survival mode.

Can you tell how far away a bus or truck is, from the sound?

I’m doing better. When I walk down a country road, I can hear the vehicles approaching behind and in front of me. On a busy city street, I feel more tuned in to the sounds.

The Medel cochlear implant in my right ear is sensitive and can pick up a distant sound. The Bernafon hearing aid in my left ear has been tuned up and improves my directional hearing. My meniere’s disease — which causes inner ear fluid, balance and hearing to go haywire — has given me a break for the past year, so while the hearing in my left ear is poor, it is stable.

My directional hearing improved but sometimes plays tricks on me, so if I am walking with Nadine, she still shouts “Car!!!!” when a vehicle approaches.

I feel more confident these days that I will not accidentally throw myself under the bus, so to speak.

Can you distinguish voices on the radio? Are you able to enjoy music?

For several years, I had turned off the radio and CD player in our car.  I might try listening to the news at the top of the hour, or a song, but I would often shut off the player in frustration. The sound felt chaotic to listen to. Singer Huey Lewis, who also has meniere’s, has described how he had to stop performing after he could not reliably hear the pitch of the music.

This past summer, I realized I could listen to CBC radio for longer stretches — let’s say the news plus a current affairs show. And “get” about 75% of what I heard.  More than enough to enjoy radio again. With my new hearing technology, I sometimes even find myself feeling happy listening to the radio. With a little concentration, I could once again lock onto a familiar song.

Do you feel anxious talking to strangers?

During the covid era, masks have complicated things for people with hearing impairment. I have had some whacky situations recently in which I could not understand a word that a stranger said. But overall, my hearing tech puts me in a much better spot than a few years ago.  I don’t feel that creeping dread — or avoid discussions with strangers like I used to do. In simple one-on-one situations, like a person asking directions, or going into a bank to speak to a teller, I feel more relaxed and confident.

A friend and fellow cochlear implant recipient has been taking more assertive action during the lockdown — advocating for masks that allow us to see the person’s lips.

Read my lips — with the covid virus not going away anytime soon, it is important to look at mask options that will allow us to see your lips.

When communication is difficult, let’s be patient and kind to each other!

ian and stone

“Can you see my hearing technology?”

************************************

And thanks Emmanuel to you and your colleagues — I hope your research goes well. The questions you are asking have made me think about the hearing journey in a new light. I will get you those completed questionnaires back this week.

I am good with my gig as a hearing-research guinea pig.

 

 

 

 

Elemental: John Bruder’s music

I first met John Bruder in the elegant McLaughlin Auditorium at Sunnybrook Hospital. We had gathered for a presentation by the Sunnybrook Cochlear Implant (CI) program. Some of us, like John, had already received an implant. Others, like me, were on the waiting list and experiencing a blend of dread and excitement. I wanted to learn more about the surgery and technology that might give me a chance to hear better. 

I recall noticing that John, who was sitting in the row behind me, wore his cochlear device with pride — the circular magnet, cable and high-tech processor stood out next to his ear against close-cropped hair. 

John and I met during the break and promised to get together for coffee. I visited him at his office downtown, where he worked as a management consultant at one of the big consulting firms. We’re roughly the same age; he was hanging in there with his career, while I was about to take a break to deal with hearing troubles.

I learned that John was a musician, and was encouraged that he was still playing piano.  With some trial and error, he had learned to appreciate music in a different way. The act of playing music now, with his new CI hearing system, also helped him to listen to and appreciate music.

During the covid epidemic, I reached John on the west coast, where he was temporarily riding out the storm, and he agreed to share his story:

John Bruder

How long have you played music and how did you first start?

I’ve been playing piano for almost 50 years — I started when I was 8.

I actually had a schoolboy crush on a girl named Beth, who played piano. I naively thought that we’d have the same teacher, or meet in some way, if I played the piano! I had a variety of piano teachers growing up, living in Kapuskasing, North Bay, Peterborough and finally Toronto.

How did your music teachers inspire you?

Fred Pritchard in Peterborough, during my high school years, was a strong influence on my classical piano work. He was quirky but very passionate. He held a global piano Licentiate Diploma, the highest level of Royal Conservatory achievement. Under his guidance, I made it to the Kiwanis Festival provincials one year.

I recall that competition for two reasons:

The first is that I played Rhapsody in C by Dohnanyi. It was unique, as it was written for a Bosendorfer Piano and, as a result, it had a low note in the score that a normal piano couldn’t accommodate. The bottom octave on the Bosendorfer also has reverse colouring on the keys — the raised keys are white and the sunken keys are black.

Secondly, during the finals, given the percussive nature of one section, I broke a black key on the piano.  I scooped it off the keys and it kind of flew into the audience, but I played through to the end. There was then a considerable delay in the proceedings, as they needed to replace the piano for the next competitor. I didn’t win, but got a great story out of it.

I studied classical music until Grade 10 Royal Conservatory, and then when I started University I got interested in blues and developing my ear and improvisation.

I’m 56 now. I’ve played off and on my whole life, having periods where I’d play pretty well all day if I could.

How did hearing loss affect your music?

I started to lose my hearing in my twenties from a genetic disorder that affects the auditory nerve. I switched more to solo play, as it started to get harder to listen to and discriminate other instruments as I was playing. I may have given up a little too easy as well.

Music has three many dimensions: frequency, rhythm and dynamic level. When I received the cochlear implant five years ago, it became apparent that the CI couldn’t make fine discriminations between musical frequency or “pitch.” So a scale played with an error would sound the same as one played correctly.

How did you adapt?

To compensate, my mind would ‘cheat’ — that is, when I was well rested, playing a Chopin Nocturne would sound, to me, very much like I remembered it. The kinetics of playing and my memory were filling in the blanks. However, when I listened to a recording of that same piece I could hardly recognize it without all of the cues I had while performing.

This divide was frustrating, but something I got used to. Since my brain was giving me a ‘fake’ musical experience when I was playing, I resigned myself to thinking that: ‘for a CI user, music is more about playing than listening’.

And so what if my brain was cheating? During the time while playing, I was having a valuable musical experience.

hand with piano

In what other ways have you changed how you play music?

The cochlear implant enhanced the other two aspects of music for me. I found I was able to greatly improve my dynamic control, which is fundamental. My instrument is called a ‘piano-forte’ for a reason — that is, the instrument allows the performer to play in a range from the quietest of musical passages up to an earth-shattering crescendo.

As well, I started to work more on swing rhythms, a style I’d never been able to learn, and I found that I made progress where I couldn’t before.

What kind of instrument do you play now?

I’m lucky to have a Celviano Grand Digital Hybrid piano. This class of piano has the best of both worlds: weighted keys and actual hammers and strings, but also digital pickups to provide lots of flexibility. I can set the instrument to sound like a piano that Chopin would have played in the 1840s, with the acoustics sounding like the type of venue he’d play at.

How have you shared your music with others recently?

I’ve always liked teaching kids. My observation with kids is that although they create their own stories and draw their own pictures, they typically learn the piano by ‘reading’ what is there and not creating. So I like to encourage early improvisation, to introduce ‘play’ into learning.

I taught some blues basics to my nephews. I had them playing two to a piano, where one plays a walking 12-bar bass line and the other improvises. The improviser would start simply with just three notes and different rhythms. Then they would switch. I had them do some ‘call and response’ playing together — this makes piano fun.

What’s up now, and what’s next for you with music?

A few years ago I started lessons with David Story in Toronto. He took me through a once-around-the-kitchen with both classical (Bach, Beethoven, Satie, Debussy, Chopin, Mozart) and various jazz styles such as stride, boogie woogie, and blues. I learned new pieces such as “Tea for Two” by Art Tatum, “Chicago Breakdown” by Big Macco, assorted pieces by Teddy Wilson , Gershwin and more.

David surprised me when I first starting studying with him. He told me: ‘You’re playing too much with your fingers!’. This led me to evolve to a ‘full-body’ approach to playing piano, where my fingers did less work and the gravity and flow of wrists and arms played a more dominant role.

Also for me, with my recent CI hearing system, I want to focus on musical styles and improvisation that highlight rhythmic elements and dynamics over pitch.

This is a path I’d like to continue to explore after the virus abates and I’m back in Toronto with my piano.

As an alternative — I’ve been engaging in a kind of urban-monk lifestyle this year, a new way of living.  So I may try to engage the piano in a different way — perhaps as an aesthetic monk-like practice. Some people who watched me play piano used to comment that they couldn’t see my fingers move, as they were moving so fast. What about not being able to see my fingers move as they are moving too slow? I’d like to dabble a little in those aesthetic, mystic questions.