This means we’re frequently packing and unpacking and packing again. You’d think we’d have nailed the list of things to go in the suitcase. You also might correctly guess that on each and every trip something ‘important’ gets left behind. Often it’s just “oh shoot, I forgot to bring my gray running shoes.”  No real panic.

But if you’re a HoH like me – someone with hearing loss – and the left-behind item is essential to communication, that’s cause to break out in a sweat, yell OMG, and start tearing through every bag in the hope that you’ve simply put it in the wrong place.

Continue reading on the Better Hearing Consumer….

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So, let me put it very clearly, in every-day language, what good communication looks like for people – who through no fault of our own – have hearing loss.

How the heck am I supposed to hear and understand you, if you do the following?

1. You don’t face me while talking to me. It’s that simple: face me and talk, or face away and don’t talk. If we can see each other’s eyeballs, we can chat. If I’m looking at the back of your bedhead, you better not be saying words.

Continue reading here…

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Telecoil and loop systems let me hear myself!

As a public speaker and performer, I use the amplification system provided by the venue. Often, hearing my voice as it goes out to the room, there’s an echo, environmental or audience noise that interferes with how well I hear. At hearing loss events, however, the room is usually ‘looped’ to allow people with hearing loss to hear. This audio induction loop system provides a wireless signal that is picked up by the telecoil-enabled hearing aid or cochlear implant. I can’t explain it any better than that, because I really don’t understand how it works. But it just does, OK?

Recently, I had the honor of performing my show, “Huh? Life with a Cranky Cochlea”, renamed “I’m Hearing as Hard as I Can” in Canada, at two major hearing loss conferences – the Canadian Hard of Hearing Association national event in Victoria, BC and the Hearing Loss Association of America annual convention in Salt Lake City.

Click here to continue reading….

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Service, as defined by online dictionaries, with my additions in italics:

A valuable action, deed, or effort performed by a hearing care professional to satisfy a need or fulfill a demand by a person with hearing loss.

To perform routine maintenance or repair work by assistive hearing technology geniuses on something like a hearing aid, cochlear implant (CI), and other assistive devices.

There it is in a nutshell—what we, the people with hearing loss, need to move us from exclusion to inclusion: competent and caring assessment, support, reduction or elimination of negative emotions, assistive technology and improved communication skills.

The heaven of good service is in the additional details: the technology type, style, cost, and ease of use, along with training on assertiveness, speechreading, and emerging tech stuff, etc.

Family and friends are our communication partners and allies but they aren’t at our service. That’s the role of the hearing specialists and technical geniuses—the professionals, many of whom go far beyond what they’re paid to do. In return, I help them out by being a person on which to practice their trade, showing up for appointments, usually on time, and being honest about my needs so that we can mutually decide the course of action going forward.

I’ve been receiving services and ‘treatments’ for hearing loss since I was two years old. Doctors examined, prodded, scoped, diagnosed, and prescribed (or not). Various hearing professionals put me in the torture chamber…oops, I always get this one wrong…I mean the sound booth…to test my hearing and then make recommendations for hearing aids which they then sell to me.

To continue reading this article, please click here.

Thank you to Cochlear Americas and to HearingHealthMatters.org for their support in the development of the “Changing Cochleas” series. 

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How’s my life going with a cochlear implant (CI)?

Well, for starters—although I can’t speak for other recipients—it’s a lot LOUDER.

All sounds are louder: the ones that I recognize as well as new ones that, without any visual clues, I need help in identifying. Luckily, there are trained people standing by for this job. For years, my family, friends and I have been playing a game familiar to any person affected by hearing loss—Whazzat?, short for What’s That Sound? 

And now, thanks to my new bimodal hearing (I wear a ReSound LiNX2 hearing aid on my left and a Cochlear Kanso Sound Processor on my right), we’re playing Whazzat a lot. All the time, actually. But my family and friends don’t mind telling me what I’m hearing, because they know if they don’t, I’ll keep pestering them—and possibly leave them for a nicer group of loved ones. Besides, playing Whazzat let’s them show off their good hearing; they also enjoy my reaction to the excruciating sound of people chewing potato chips.

But at only 32 days since activation, most familiar sounds bear little resemblance to how I hear them acoustically through my hearing aid. The voices of strangers sound curiously alike, as if they’re crying while they speak. What I hear do hear clearly, however, are those high frequency sibilant sounds. Think of the hiss of snakes and steam and the grocery checkout woman who asks “do you want bagss-SSS?”  I groan f I’ve forgotten my sound-less cloth bags in the car; paper bags are noisy enough, but the loud crackling of plastic bags has become my Most Annoying Sound ever. In Wired for Sound: A Journey into Hearing, my friend Bev Biderman writes about her surprise at their harshness—she had expected that they “rustled softly in peace.”

To read the rest of this article, please click here.

Thank you to Cochlear Americas and to HearingHealthMatters.org for their support in the development of the “Changing Cochleas” series. 

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Some of us actually transform into semi-technical creatures. In order to hear, I’m a battery-operated person with my hearing aid and electrically-powered with my cochlear implant. This electrode array in my cochlea has turned me into a computer; I have stuff operating inside my head! In this computer, the Cochlear technology is the hardware—and I’m the software; I control my own hearing success through a variety of communication strategies.

So—what do I need to understand?

• How cochlear implants work and how my brain makes sense of the universe’s sound signals.
• How to turn the sound processor on and off, keep it from falling off, get the batteries in and out. (Hint: it takes repeated attempts with fingernails, until you remember the magnetic battery-remover they gave you.)
• What’s in that powerhouse of a sound processor—the listening programs, status information, how sound can be tweaked, etc.
• The CI’s technical add-ons, the magic that connects us to the world of people and nature.
• That we’re now in rehab! Aural rehabilitation is ongoing (for most of us), taking weeks, months, years, but at least we can do it from the comfort of our own homes at our own pace, rather than at a treatment center, with weekend passes.
• That the big payoffs only come from—Practice, Practice, Practice. (This was a direct order from my surgeon.)

So—who and what helps us to learn all this?

Small, Wonderful Black Things

• Our audiology and medical team
• Reading the many manuals that explain the equipment, which includes many small black things that look alike and all must be charged.
• Watching online CI videos and reading other CI blogs
• Online aural rehab programs and exercises
• Other CI recipients and their family members
• Support from the cochlear implant manufacturer

Continue reading this post on The Better Hearing Consumer….

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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.

Continue reading this post on The Better Hearing Consumer…

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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 . 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.

Read the full article here on the Better Hearing Consumer….

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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.

Continue reading on the Better Hearing Consumer….

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This article is the first in a series called “Changing Cochleas”. The series starts with my decision to have a cochlear implant and continues with the surgery experience and through the rehabilitation process.  

As a writer about hearing loss, the brand of my hearing aids has seldom been relevant to my writing. But unlike hearing aid manufacturers, cochlear implant organizations not only produce the technology but also play an important role in helping recipients successfully adjust to the implant. So, the story of my CI experience is also 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.

Why A Cochlear Implant?

What is it like not to hear?  What lengths would you be prepared to go to hear, to hear well?

Please continue reading this post at HearingHealthMatters.org Better Hearing Consumer.

Stay tuned for Part 2:  “A Perfect 1 ½ Turns”

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