Monday Misunderstanding 4: Communication Skills Suck When You're Hearing Impaired

Today, I received praise from my audiologist. 

In terms of "testing" my hearing, Dr. Sharon decided to call from her cell phone to mine, allowing me to try out the telecoil function on my cochlear implant processor. Telecoil technology can better separate background noise from the sounds someone wants to hear, such as a TV at a distance, or a voice on the telephone.  This pairing of telecoil technology with cochlear implants (or hearing aids) bridges the physical space between a person and the sound source.

I've tried the telecoil a few times during rehab exercises and work conference calls, but each time with limited success.   That trend continued today. 

I struggled.  I could feel the frustrated tears rise to the surface, my inner dialogue growing more defiant by the second.

I don't give a crap about the telecoil right now.  I just want to be able to understand my kids in the car.  My coworkers when they speak to me.  A friend in a restaurant.

Quickly, I said, "I don't want to do this anymore.  Let's move on."

Each time I meet with my audiologist, I get nervous about the time. 

Maybe you identify if you've ever had a pressing health concern and you finally catch that in-demand specialist.  You want to make the best use of that face time and today, I didn't go in with high hopes of telecoiling.

My expectations have lowered significantly.  I just want better in-person speech clarity.

So I did not get praise for being patient and kind during the telecoil experiment.   A polite hear-er with the telecoil, I am not. 

However, Dr. Sharon called me a GOOD LISTENER.  A GOOD COMMUNICATOR.

I was a bit taken aback by her feedback, maybe because I feel so tongue-tied when it comes to explaining how I hear to her.  She often spends way over an hour with me, but still, it flies by, and  that time to me is precious.  I want to ensure I'm communicating as best I can to achieve optimal mapping. 

Here are some of my descriptions I've used when describing CI hearing thus far (I'd love to hear what others say):

• For a few months, each time someone said "Ch" or "Sh," it felt like the person was flicking me in the head.  As you can imagine, I felt that way often.
• In the last month, each time Claire clapped her hands (and this is often, as she opts to dance place to place instead of walk), it felt like once again, I was getting head-flicked.  No fun.
• I say sometimes it's like a pounding headache, but only for a few seconds in the implant location.
• I use phrases like "voices sound like they have two layers" and "there are holes in sentences"
• I use words like "echo" and "squeak" and "static" and "robotic"

Does this accurately convey my experiences?  Sometimes, I'm not sure. 

But Dr. Sharon assured me I'm a good listener.  After conducting a comfort test within each of the CI's electrodes, one by one, gaining my feedback after each and every beep, she said I'm "in tune" with what I'm hearing.

I believe many hearing impaired people are, ironically, good communicators.  In my case, I know I'm good at reading visual cues.  Body language, facial expressions, where a person looks when speaking-- all of these factors have aided my intuitive capabilities in the workplace and beyond.  I also double-check a lot; I rephrase and repeat.  I'm all the more conscientious and want to be sure I understand completely.  I pay attention (it's exhausting, at times-- but I still do it) and I believe this brings better results in my life- both at home and in my professions- and also makes other people feel acknowledged and appreciated.

So am I a good listener with my new mapping?  Only time will tell.  But it's doctor-approved that I'm hearing impaired and my communication skills don't suck.

What about you?  How do you communicate successfully with doctors?  With hearing professionals?

Four Turtles

Today I faced a long break between appointments.  

The morning had me scheduled with my nonprofit job, the afternoon with writing, and the evening with my new t-ball gig.

Of my four paying jobs- nonprofit, tutor, teacher, writer- I was only obligated to two today.  I questioned if I should get a manicure, maybe an eyebrow wax.  I made friends with a wannabe celesbian on twitter and thus learned the word celesbian.  I made a kickass salad of arugula and goat cheese.  I thought about vacuuming, decided against it and considered yard work.  But that wasn't happening.  I was lost in this break.

 

I meant to write, and more than just a tweet.  You know, a freelance assignment that actually pays me.

But I couldn't commit.  I couldn't see how to pinpoint the energy.

It was a beautiful afternoon and quite depressing of me to Facebook to no one.  I ventured outside, eager to run as I usually do, but my brain was heavy.  I needed to be present, and I knew attention to detail would fail me while sprinting.  

I would walk.

Trekking down my small town street, I turned toward the local park.  I passed just-hanging-on houses, the paint mostly chipped away on their porch steps, the lawn decor faded from having never been removed during snowstorms.

Those houses had been through a lot.

Occasionally an old man would drive by, winning staring contests with me before going about his way.

I looked at the overflowing playground trash cans, the space bordered with cigarette butts and crushed soda bottles.  I felt the familiar mix of anger and sadness that arises when I question what I'm doing here, if it will ever get better.

I took a different route than usual.  

I'm not a fan of woods, yet I stood at the mouth of a stream.

In the water sat a branch, and just barely, I realized something more was there.  A turtle.  Wait-- FOUR turtles, MY turtles.  

They were waiting for me but what exactly for? 

Were they symbolic somehow of Jeff, Colin, Claire and me?  Was one a writer, a tutor, a teacher?  Do you blog in your spare time, turtle-girl?  Why are you here?

Despite their reputations, three of them must have startled in my presence, scurrying off with such speed, I immediately lost sight of them.

But one- no doubt the mama- remained perched on her log.  She wasn't scared; she didn't flinch.  I then wondered if she could hear.

We stared at each other, She-turtle and me, meeting each other exactly when we are supposed to, on an unplanned walk on a sunny day.

She was telling me something: quietly, gently, and with dignity.

Stay the course, girl.  Slow and steady, stay the course.

Then when it damn well pleased her, Mama Turtle joined the group in the water.

She decided she was ready, and she dove right in.

 

 

My Fresh Start

I heard the birds this morning.

As I rushed out my front door, I paused.  I heard the sound I recalled from my childhood.  I then looked to the sky.  

"Squack-a, squack-a, squack-a."

There above me, a beautiful V formation of birds returned North, hopefully bringing with them the warmth and sunshine of wherever they last were.  I certainly know a warmth came over me. 

In the past few months, I've known birds are overhead because I could hear beeps.  From process of elimination, I could figure out it was birds, but to be honest, my brain heard similar sounds for children, sirens, cars driving by.  I've had awareness, but no clarity.

But today it was BIRDS as I knew BIRDS TO BE.  I could have wept.

Just yesterday, I couldn't hear that.  Now I can.  It's truly remarkable.

During my Thursday night ugly-cry, I mourned I couldn't hear such sounds.  And I was TIRED.  Tired of being optimistic, tired of withdrawing instead of participating, and most of all, I was tired of being TIRED.  In the past eleven months, hearing has been so much work.  I felt cheated, and I finally let my anger take hold of me. 

I wrote my last post on my phone, sitting in my car in a Stewart's parking lot, tears streaming down my face.  It was one of the fastest posts I have ever written, emotion spewing out of me as I released frustrations into the blog.  Following the post, I received many encouraging messages that not only reminded me of my blessings, but made a huge difference in the renewal of my strength.  A dear and wise friend wrote this to me:

"One thing I had to learn was that without the pity parties once in a while it is hard to stay strong and move on to Plan B. You have to feel it once in a while. I mean REALLY FEEL IT.  It will release so much of what you may not want to face but unfortunately have to. You are going to need days like this to appreciate the wonderful things I am certain will come your way because YOU will make it happen."

She claimed my words went straight to her heart, and I could not have been more appreciative of the reciprocation of her wisdom.  Thursday Night Ugly Cry Incident was the catalyst needed to embark on the next chapter, and when it was over, I also sensed I was about to embark on a fresh start in my journey.

The new chapter began yesterday morning as Jeff and I traveled to my mapping appointment.  The audiologist, Sharon, and I had emailed back and forth prior to yesterday so she knew of my struggles.  She had sent my files to Cochlear (my implant manufacturer) to see if their field specialist had any insight as to why the program was not giving me clarity.  Sharon had previously emailed me warning that in some cases, recipients might just get awareness (i.e., beeps for birds), but not clarity.

I refused to believe I was one of those people.  I did not sign up to hear the world in beeps.

At the start of the appointment, Sharon indicated all of the tests she wanted to conduct, promising that she "would work me hard."  While it is often the case for an audiologist to make an adjustment on an electrode and for the other electrodes to automatically follow suit, Sharon said this was the more modern procedure for mapping, and that perhaps, we needed to try the older, and longer method, of testing my cochlear implant electrode by electrode, each one at a time. 

The test is known as an NRT (neural response telemetry) test.  It doesn't require much work on my part, besides sitting and listening to a series of beeps that range from quiet to loud to very loud to painfully loud and back to quiet again.  At one point, I indicated I wasn't hearing anything, and I could see the surprise in Sharon's face.  Repeatedly, she'd ask if I was hearing beeps during periods of complete silence and she would nod knowingly.  I knew we had found something, a reason why perhaps hearing had become so painful for me, so demanding of my energy.  

Sharon indicated my electrodes were not following the natural pattern they were supposed to, or as she said, "they were not interpolating well from one to another."  She felt I was getting too much high frequency and too little low-- quite a difference from before my surgery when I had zero high frequencies in my world.  But all those beeps, all the spoken "shh's" and "chh's" that felt like electric shocks to the side of my head... THOSE were the high frequencies completely dominating over all other sounds presented.

Voices tend to fall in the mid-frequencies, but with limited access to those sounds, no wonder I was struggling to hear PEOPLE.  

And so my program was COMPLETELY changed.  Most times when cochlear implants are mapped, the audiologist makes a small change or tweak here or there.  This was more like a CI overhaul.  It was what I needed: A FRESH START. 

It's still early to determine all that I can and can not do with my new program, but in the past 24 hours I have been stunned by the difference in sound quality.  I even performed a rehab exercise and stared with my mouth wide open at the computer after receiving this result:
 

96%?!!  ARE YOU *#&%ING KIDDING ME?!!!

  

Some other results from Day 1:  

• I can talk with my son for five minutes without having to look at him and by concentrating, I can follow.  
• I can hear the TV.  I may not know all of what is being said, but I can hear dialogue without straining to listen.
• I can hear phones ringing, and I know they are phones.  
• When I dropped my earring back on the floor this morning, I could hear where it hit, enabling me to pick it up immediately instead of a) losing it, or b) spending ten minutes to find it.
• I can hear the blinker in the car, but it's a simple clicking noise in the background, not a series of turbo-charged beeps like I previously thought.
• I can catch a few words my coworkers are saying without having to look at them.
• I can hear the snow melting from the roof, producing a beautiful pattern of soft pitter patter on the sidewalk. 
• And I can SING!   WHAT A JOY to sing!  I even locked myself in my bathroom late yesterday evening as to not to disturb my sleeping family as I pretended I was Norah Jones.   

On Thursday night, I cried, I grew angry and I felt it... I REALLY felt it.  But how right my friend was, that with that release, today's appreciation is all the more miraculous.
 
And tomorrow might sound even better. 

Thank you for your kind words, prayers, and love.  I love you back!

Here's to Hope: Vanderbilt University's Cochlear Implant Study

In a study led by Vanderbilt University, researchers are creating a patent-pending nonsurgical process for cochlear implants.   Check out the article from Vanderbilt University here.   Their hope is that this will greatly improve recipients' abilities to understand speech.

The research team aims to increase sound quality and also improve upon spectral resolution.  This is when the brain takes complex sounds and breaks them down into individual parts-- a process people with normal hearing have little problem doing.  A bionic ear, however, struggles with this, often causing speech clarity, especially in noisy settings, to be challenging and exhausting.

So far, participants in the study are calling the results "life-changing."  Even CI users who were happy with their electronic hearing before claim that their hearing after the study is even better.   

If you've been reading my blog, you know my top reason to get the CI was to understand speech as effortlessly as possible-- without looking, without lip-reading, in the dark, on the phone, in the car.  But it hasn't happened for me... not yet.

After almost a year, to be struggling with speech recognition is frustrating.  But this study, THIS WONDERFUL STUDY, is giving me hope.  And of course, I've emailed Vanderbilt... several times.  (VANDERBILT: If you're reading this... PICK ME!)  I would LOVE the opportunity to work with their research team.

If I can't though, I'm hopeful the results of this study will be a game changer for cochlear implant recipients.

My friend Jennifer, a Tennessee native and an amazing connection for me via the power of Facebook, is one of the study's lucky participants.  Jennifer was the first hearing impaired person I reached out to when I began exploring treatments for my hearing loss.  I stumbled upon her profile on a website that listed "hearing impairment mentors." In Jen's profile, she identified herself as a cochlear implant recipient, as well as a busy mother and an extreme social butterfly.  I sensed a match for me.

I wrote to her and she responded with one of the kindest, encouraging messages an in-the-closet hearing impaired person could receive.   Little did I know that Jennifer is truly a rock star in the cochlear implant world; she is very knowledgeable about treatments and assistive technology, she is an incredible advocate for people with hearing loss, and she is a shining spirit who gains followers wherever she goes.

Now she is providing an INCREDIBLE service by blogging about her experiences in the Vanderbilt study.  I'm sharing her blog, Journey to Sound, in case someone is out there who like me, wonders if speech clarity will ever come.

I hope this study, and Jen's experiences, bring as much hope to YOU as it has brought to me.   Miracles happen every day.  Let's keep hoping!