On January 12, 2017, I received my cochlear implant (CI) at Sunnybrook Health Sciences Centre in Toronto.  This article is the third in a series, “Changing Cochleas”, in which I share this new segment in my lifelong pursuit of better communication. (Read Part 1 and Part 2.)

As a writer about hearing loss, the brand of my hearing aids has seldom been relevant to my writing.  But cochlear implant organizations not only produce the technology but also play an important role in helping recipients successfully adjust to a new way of hearing. So, in writing about my CI experience, I also write about the brand I chose, Cochlear. I know many people who have happily and successfully chosen to be implanted with other brands of CI technology.

What’s important is that we have all been given the opportunity for improved hearing—and took it.

 

February 6, 2017, just one day out of my life, but with so many expectations hanging on it that I was reluctant to get out of bed.

Three weeks and four days after my cochlear implant (CI) surgery, this was the day of “switch on”, the activation of the device – and potentially the dawn of a new hearing life according to the messages of encouragement I’d been receiving for months from people who had been implanted.  You won’t believe how your life will change, the new world ahead of you, they wrote.  It was a very high bar.

My family and friends were also looking forward to the activation. These were the people who live with my hearing loss, who repeat half of what they say to me, who speak louder or softer depending on my requests, who point out sounds that I need to hear (car coming!) and who let other sounds, unimportant to the moment, simply pass me by. These are my hearing people who are hoping that, soon, I might be able to hear like them.  An unbelievably high bar.

I didn’t want any of us to be disappointed, so I had dialed down my internal excitement. As we drove to the hospital for the appointment, I settled on middle-bar expectations. At one end of the scale, I felt confident I would hear something, like bells, whistles, beeps. At the other end, I know people who were using the phone almost immediately. But I wasn’t planning any phone calls that day with the new processor. My goals were simple: learn how to get the Kanso Sound Processor on and off, hear something, and maybe—dare I hope for this—to understand what people were saying with the help of speechreading.

The Hearing Husband and I crammed into the audiologist’s office. Doug was filming the activation; he was so excited that I hoped he could keep the camera steady in the event of any big, teary aha moment. My other worry was that I’m a public speaker and actor, and my sort tend to perk up and ‘perform’ when there’s a camera or audience; I wanted to be honest and focused on the activation, not the creation of an emotional Facebook video.

We quickly got down to business. Rebecca, the audiologist, connected the sound processor with the computer to ensure the electrodes are doing their job and receiving signals from the sound processor. 

Ah, my beautiful new processor; since I had last seen the dummy version, the Kanso had grown—in my mind—to the size of a free-run dinosaur egg, but in reality it was like a small, flat chicken egg. After we practiced turning it on (easy) and off (slightly less so), my hand moved the device slowly to the general area of slight swelling on my head. My fumbling was short-lived because when the Kanso gets close to that sweet spot, it almost jumps into place—the magnets are powerful.

All 22 electrodes in that “perfect 1 ½ turns” had reported for active duty; this was good news. Setting the volume level turned out to be the most difficult task of the day, because my tinnitus was in full swing. Rebecca ‘played’ a series of either beeps, and I had to hold up the corresponding number of fingers, 2, 3 or 4.

I can’t speak for all people with hearing loss, but in hearing ‘tests’, many of us operate with our darker nature—we try to cheat. There are many reasons, but it boils down to not wanting to give the wrong answer, or to prove we don’t have hearing loss after all. But here I was, demonstrably deaf and recently implanted—there was no reason to hide what I could or could not ‘hear’. Still, I wanted to hold up the correct number of fingers, regardless of what I heard.

The first few beeps went well. But then they got quieter and my tinnitus got louder, so I started wiggling a few friendly fingers at her in the hope that she’d see the correct combination.  She’d ask, “Is that 3 or 4 fingers?” and I’d reply “Yes.”  But Rebecca is used to people like me and she managed to get an accurate reading.

What did the voices sound like? All the same. Rebecca’s, Doug’s, mine—all of us sounded like loud braying horns, with no variation in tone, inflection, pitch and there was definitely no resonance. It was R2D2 on drugs. A robot learning English. Playing Beethoven on a pipe organ with just one note, over and over again. But hey!  I could hear those sounds and the break between the words. I could understand them too, with the help of speechreading.  Hooray for me!

Then came the sound tests—without the speechreading. I was shown a card with pictures such as a mouse, truck and airplane, and their related sounds such as eee, ahh, and mmm.  Rebecca covered her mouth and I had to identify the sound she was making. It’s amazing how much eee sounds like mmm when both are played on horns in your head. I made Rebecca cover her eyes too, because eye shape can change with certain mouth movements. I got a passing grade.

Then came the math test—Rebecca spoke random single digit numbers, which I tried to repeat. I did ‘fine’, especially with sibilant numbers such six and seven. The horn sounds were punctuated with loud hisses that indicated ‘s’, ‘sh’, and even ‘t’ sounds, which I’ve seldom heard before. Now, I’m awash in bubbly sibilance; it’s like bathing in champagne. (Note: 5 days later, I’m sitting at the table as my husband randomly tests me on numbers from 1 through 999. I’m proud to report I got most of them right. 50’s sound like 30’s but apart from those, I’m one amazing number-hearer!)

Rebecca said she was pleased with my work. (But would she have told me if I was below average, or that it was clear that I was going to have work harder than other CI recipients?) The meeting ended with a Cochlear backpack full of ‘stuff’ that will be part of my go-forward hearing life: remotes, microphones, batteries and related paraphernalia, as well as chargers and instruction booklets for everything. By the time my first mapping session comes around next week, I will hopefully have made sense of some of it. I’ve also received my marching orders…practice, practice, practice and wear the CI for full days until I to to bed, which would be early during the coming week.

Rebecca and I hugged. I’m on my way.

 

Next in the Changing Cochleas series:  Part 4 – Celebrating CI with 1000 New Friends”

Thank you to Cochlear Americas and to HearingHealthMatters.org for their support in the development of the “Changing Cochleas” series.  As always, my choices and opinions are mine alone.

The Big Day—Before, During and After

 

Are you one of those people who never looks back, who never second guesses a decision? 

Well, I’m not. In the 14 months between saying let’s do it and actually having my cochlear implant, I did not regret my decision. But when people asked me if I was excited about the cochlear implant, I always said not yet. It didn’t seem real; I couldn’t imagine being on the other side of activation day, the day when I would start hearing with my new device. 

But now it’s in progress. Surgery—been there, done that. Activation—two weeks from time of writing. Rehabilitation—ongoing, with expected lifelong improvement. And still, no regrets.

My family and friends have supported my decision from the beginning. The Hearing Husband isn’t the kind of man who sits and dreams about what could be; if something can help, let’s do it. My father, almost 90, quietly follows and cheers on my progress (while limiting his own hearing aid use to daily card games with his lady friend). And I received a strong gust of girlfriend-support at a snowshoeing getaway a few days before surgery. At the final breakfast, my best friends pulled up their sleeves to reveal supportive but temporary cochlea tattoos that echoed my real one.

How could I not succeed with this kind of love and support?

The surgery aspect of implantation may be intimidating for many people and others view it as invasive, but I see it differently.

If I hadn’t had several foot surgeries when I was a child, mere walking would always have been painful. Without a caesarean section, my baby and I might not have survived. Surgery that saves, repairs or corrects is not invasive, but necessary. Many deaf people choose not to have surgery because they don’t require ‘fixing’ and I deeply respect that opinion. But my language has always been the spoken one and I was struggling; I chose cochlear implantation to improve my communication—doing better than ever would be nice, but I’m trying to manage my expectations.

I arrived at the hospital, calm and ready, partly because new pre-operation rules meant I could now have coffee, which was a precious moment of routine in a decidedly non-normal day. As I was prepped for surgery, there were only a couple of ‘off’ moments. You have to wear two of those pale, over-washed hospital gowns; the first one had to open to the back and because its neck strings had become permanently knotted, I slipped it over my head. The second is worn with the opening tied at the front. As I sat waiting like a queen in my regal attire, I actually growled at the TV because—once again—there was no captioning.

Soon I was on a gurney outside the operating room. Various medical people asked me questions, repeatedly, leaning in close for better speechreading as I couldn’t wear my contact lenses or glasses and had just the one hearing aid in my ‘good’ ear which they removed at the last moment. What was my name, date of birth, did I have allergies, had I eaten anything. The question that bothered me even after the surgery: do you have any loose teeth?  

The otolaryngology (ENT) resident asked if I had any questions. Yes, doctor, I do: how are you going to make sure you don’t do the wrong side?  Call me fussy, but this was important to me. He drew out a purple pen and marked clear instructions on my forehead. It took the nurse and the anaesthesiologist a couple of minutes of fumbling to un-knot my ball gown; I think I laughed and said I’d be writing about this. (Mission now accomplished.) The last thing I remember, as the anaesthetic took hold, is that the tinnitus in my ears disappeared for a few blessed seconds before my consciousness followed behind.

Then I was awake. Groggy, I checked out my worst fear—had the facial nerve been affected (an extremely rare occurrence)? Hooray, my mouth was the same shape as before! Had they implanted the correct side? Hooray again for the purple arrow! 

In the 10 days since the surgery, things have improved daily. Pain is minimal, almost nothing. No vertigo. Some minor light-headedness, but in a post-surgery call, Dr. Chen, my surgeon, said the way to get over this was to get up and move around as much as possible. My husband also heard the instructions and, after the first couple of days when I mostly slept, he had me shuffling around the dining and living room; now I can march rather than shuffle. Due to the chorda tympani nerve being affected, my tongue has that scalded (but painless) feeling after you’ve burned it on hot cheese, but my taste is unaffected. Also, the upper rim of my pinna (ear flap) is numb-ish and if I wanted another ear piercing, which I don’t, this would be the time. All of these symptoms will improve with time. Dr. Chen was pleased with the surgery, because the x-rays showed that the new electrodes had done “a perfect 1 ½ turns” in the cochlea.

I have a Walking Dead zombie incision on the side of my head which is healing nicely, they tell me, and my hair is already growing over it. There was a minor freak-out around Day 6…looking in the mirror, my right ear seemed bigger than the left. The more I stared, the bigger it seemed to grow to about the size of a rugby player’s cauliflower ear.  Again, this minor swelling will subside which is good; I’ll wear egg-shaped processors on my head but I didn’t sign on for radically different-sized ears. It’s a personal image thing.

Staples come out tomorrow and activation is in 10 days’ time, when I get my very own Kanso. And now—I’m getting excited.

 

Thank you to Cochlear Americas and to HearingHealthMatters for their support in the development of the “Changing Cochleas” series.  As always, the experiences and opinions in this article are mine alone.