A group of geese is called a ‘gaggle’ and cows form a ‘herd’. So what do we call a group of cochlear implant users?  A “cockle”? A “CI-heard”?

I don’t know, either, but recently I attended a very large gathering of electrically-operated people who, like me, have electrodes inside their heads and processors on top of them. And every single person in that cockle-heard, whether or not they understand it, was grateful for the technology (and to the people who created it) for returning a sense of hearing they had lost, or never fully had.

Cochlear Celebration was quite the party—but not the crazy-party bash like March Break in your university days. This was a well-orchestrated event that combined information sessions, technology demonstrations, cheerleading and candid, impromptu talks with people who know more than you do. It also inspired at least one personal, important aha moment.

There were 1000 of us at the Cochlear Americas event: CI and Baha recipients of all ages (and I mean all ages, from kids to the elderly), their favorite hearing people (spouses, friends, children, parents and whatnot) and Cochlear staff, who had convened in Orlando for three days. (If you’re going somewhere in the middle of winter to talk about reclaiming lost hearing, there should be palm trees, right?) The focus was simple: cochlear implantation and its positive and profound impact on our lives.

At Disney, you see mouse ears everywhere!

People with hearing loss should meet other people with hearing loss. Life changed when I attended my first hearing loss conference back in the ‘90s. Hearing professionals and technical people give us the technology and operating instructions, but it’s other people, walking our walk, who help plug the holes that hearing loss has punched in our lives. As I wrote in a 2014 article:

When I finally met other people with hearing loss, the lights went on, fireworks exploded, and angels danced. It was like falling in love – but with a group of people, with a new awareness and with a new me.

But while my reaction to this conference of CI recipients was more subdued, the collective impact of being with people who understand you cannot be underestimated—or even adequately described. My Hearing Husband doesn’t usually come to conferences with me, but he came to Celebration because he’s fascinated by the CI process, fiercely interested in the technology, and hopeful for good outcomes. For us, one of the best parts of the weekend was talking with other couples whose relationships have been at least partially shaped by profound hearing loss. 

I’m still in my cochlear implant infancy and at just 11 days after switch-on, it was almost too soon to be there. I couldn’t yet relate to the long-term results of most of my fellow CI-hearders, but I could soak up their success stories, taking it on faith that their experiences might one day be mine. When people learned how recently I’d been activated, their eyebrows rose to their hairlines. 

“Howzit going?” they asked with smiles.

“Well, you know,” I shrugged. “Bells, horns, whistles, static. Sometimes a clock ticking.”

“A clock ticking, wow, that’s great!” Cheerleaders, all of them. 

“Yeah, clocks are nice, but I’d like to tell the difference between my husband’s voice and a car going by.”

“Hang in there,” they said. “One day, suddenly, it will be clear.”

I believed them because I want to. I have to.

A bad selfie. Hearing Husband wore a device that streamed to my CI and hearing aid.

At first I felt like an impostor because it’s all so new. Also, I’m Canadian and we’re not as good at the rah-rah stuff as Americans, probably because we don’t do marching bands in school. This was the first conference I had attended that focused on technology produced by one company. It was a bit jarring at first, but within a day, I had an aha moment and a shift in my thinking: them became us. I can do this and these people really wanted to help me.

I’ve always felt a connection to anyone with hearing loss, whether they use hearing aids, cochlear implants or nothing at all. But now, as a CI recipient, I know from experience how they’ve gone through the hearing loss wringer. They’ve tried hearing aids which at some point no longer helped. Dealt with a thousand emotions and faced some scary choices. They’ve had surgery and recuperated, with a new bump on their cranium—when will I stop touching that? There have been endless hours of aural rehabilitation and many breakthrough moments that I have yet to experience.

Celebration was an active event. The Hearing Husband and I participated in just about everything, we thought, but in seeing other people’s photos, it appears we missed a few things. Where was that giant koala?  We went to as many workshops as we could, all of which—thank you!—were looped and with large screen captioning.  At the Expo, we drank coffee and discussed CIs rather than politics (for a change). I jumped into action when someone said, “Hey, they’re handing out free batteries/dry aid bricks/buttons/whatevers over there!”  With our cockle-heard, we watched the spectacular fireworks at Epcot and, at the closing breakfast, got teary-eyed as university scholarship recipients told their inspiring stories of life after implantation. You just can’t make this stuff up.

Cochlear likes to share pictures, lots of pictures, of happy CI people and it grows on you, really. This was more than a learning event; it’s where Cochlear honors both its clients and staff. I know that other cochlear implant companies do different types of events, where their CI recipients feel similarly appreciated and supported. I wish that hearing aid companies and retailers would offer their clients this type of support. While some might see these as merely promotional events, as a CI recipient, I call it a growth event, where I can talk to staff—from the president to technical support people—as well as other recipients who want to share valuable insights on how life can be better.

All I had to do was smile and say, Hi, I’m Gael from Canada. No one asked me about our cute Prime Minister or if it was cold where we live. What they cared about was cochlear implants and good communication.

 

Next in the Changing Cochleas series:  Part 5, Learning What We Have to Learn

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.

I’ve got news for myself—I’m bimodal

Until recently, I didn’t know that bimodal was a thing. For the last two thirds of my life I’ve been a hearing aid user (20 years unilaterally and 20 years bilaterally). Now I’m a cochlear implant recipient, and the right side hearing aid is history.  (Are you with me so far?)  

I’ve written about the many ways in which deaf and hard of hearing people refer to themselves—always a good subject to fire up a hearing loss crowd—but I hadn’t realized that I could use a short’n’snappy way to describe my hearing.

Without the aid of technical devices, the hearing in my right ear is zero, diddly-squat, nada. On the left side, I can hear doors slam and my husband speaking directly into the ear, although I’m sure he’s yelling and destroying valuable hair cells in the process. As a technically bimodal babe, I hear acoustically on one side (hearing aid) and electronically on the other (cochlear implant). Bimodal an easy, lovely term—IF you know what it means. Hearing care professionals and other, uh, bimodals, will understand, but other, random people else might raise their eyebrows.

Is it perhaps a new term for swinging both ways?

Something that happens to women when they reach the big six-O?

A mild depressive state easily cured with a glass of Chardonnay?

For three weeks after my CI surgery on January 12th, I got used to lopsided hearing. CI activation introduced a barrage of hisses, horns and beeps that, with a little more rhythm and melody, might be considered a magnificent symphony. But right now, it’s a private performance. Speech is clear and natural from the hearing aid side, but I need to speechread. From the CI, so far, speech is garbled and men and women sound the same. But, I can hear all the high frequency sounds my hearing aid doesn’t deliver; I’m awash in sibilance, ticking clocks and the high-pitched jangling of keys in the car. My bare feet hiss across the carpet. On a Florida beach last week, I heard the crunching of shell shards and sand below my sandals. Isn’t that just freaking fabulous!?

How do others deal with being bimodal? I asked my hearing loss Facebook world and, just as individual success with CIs and hearing aids varies from person to person, several friends reported different experiences.

Sam:  “I’ve been bimodal for about 8 months now, and though it’s been the best decision I made it was a rather rough start. My left ear hears better but artificially through the (CI) and my right hears “naturally” through the hearing aid. It’s the best of both worlds working together.”

Bonnie:  “Either one alone is not so great, but together is almost ‘normal’. It’s important that your audiologist programs both and makes sure they are balanced so that neither is dominant. The CI clarifies environmental sound and makes voices louder for me. The HA clarifies speech and gives me music. They work in tandem.”

Carolyn:  “Once I got my first CI I never wore the other HA again. It simply was not providing enough sound to make it worthwhile. I now have two CIs and they work well together and the sound I get is significantly better than just using one CI.”

Julie:  “There are times when I’ve wondered if I’d do better unilaterally, but…I need both technologies to get the maximum benefit from my CI. If the HA battery dies, I don’t do well with the CI. If the CI goes off or out for any reason, I don’t do well with just the hearing aid. I test at 95% or better hearing with both devices when I’m tested annually. I love being bimodal and have found it fascinating to experience how my brain has adjusted to this way of life.”

I’m learning what being bimodal means for me. I wouldn’t introduce myself at a cocktail party of hearing people with, “Hi, I’m bimodal”—but at a party of CI recipients, the meaning would be clear as a bell—and then we would probably start talking about whether we can actually hear a bell clearly.

Bimodal—I’m going to use it because I’ve earned it. It’s how I hear from here on in.

 

Image used by permission from EarSuspenders.