Bilateral Cochlear Implants - Easy Listening Niagara Falls

That title is a bit cryptic - EASY LISTENING NIAGARA FALLS - but that's the best way to describe a wonderful four-day vacation to that most scenic of locations, Niagara Falls.  I had been there are few times in my life, but this visit, for some reason, was especially wonderful.  And that "some reason" was simply better hearing.  Aside from being bilateral - which after four years has given me increased facility with casual conversations - I also had a new software upgrade put on my programs three months ago, called ClearVoice - which dims droning background noise.  Even though that software is geared to better hearing in noise, which it does, it also seems to result in better hearing in general.   And that means greater confidence in every situation, which means casual conversations in any environment.

Thinking back - I started a conversation with someone near the falls, which meant with the roar of the falls in the background.

And then we went on the Maid of the Mist, which is a boat ride that takes you right next to the falls. 

I made sure that I wouldn't get my cochlear implant processors wet - even though they're water resistant, I wanted to play it safe. Good thing, too - because I got drenched!  We were SO close to the waterfalls that I was being doused with spray. 

So I was experiencing sight, sound, and touch - incredible!

Everywhere we went, I found myself striking up casual conversations.  Like when we went on an aerial tram ride over the whirlpool down river from the falls.  It was hard not to strike up a conversation when you're on a cable car that looks like this (that's me looking up).

 

We visited the Botanical Gardens, which had a Butterfly Conservatory -

and I found myself talking with children, as we all marveled at this enchanted butterfly world.

We explored quaint Niagara-on-the-Lake.

It was all quite idyllic - and I came home with a wonderful feeling of joy - at the perfect weather, the majestic sights - but more than that.  I remembered the last time I had been to Niagara Falls years ago - and the impression I retained was the cloud of hearing loss - looking at the beautiful sights, but nothing more - no connection to the other tourists around me, or even to the nuances of sound.

This was different - sights and sounds - and easy listening.

Cochlear Implants: Book talks and more

I've been busy talking!  Book talking, that is.  I had three interesting book talks scheduled in the past few weeks - presentations to groups with hearing loss and beyond!

Let's start with the National Court Reporters Assn convention, held in Philadelphia last month.  I was asked to present on "The Basics of Hearing Loss and the Need for CART and Captioning Services."  I was really looking forward to doing this one, as court reporters are the wonderful folks who do realtime captioning (CART), something I desperately needed to function prior to getting my cochlear implants - and that I still use depending on the event and environment.  I had intended to speak and answer questions for an hour and then do a booksigning with the remaining 30 minutes.  But the discussions got so intense and meaningful, we overflowed to 90 minutes - and then continued with the booksigning in the hallway!  A few days later, I was delighted to see an NCRA member review of my session posted on the NCRA website - calling my session "beyond inspiring."  Made my day!

And then a few days later, I learned that one of the court reporters, who had attended my session, lent a copy of my book Listening Closely to one of her neighbors, whose daughters have Usher's Syndrome (deaf/blind).  Again, I was delighted to learn that the mother had written a blog about my books entitled "A special book and author"!  I wrote those books to help others, so it was such an incredible feeling to know that goal was being met once again.

The second book talk was at my temple's Book Club.  They had chosen my book, Listening Closely , to discuss.  I was looking forward to this discussion too - new territory for me - as I wanted to delve into the spiritual aspects of my book, not just cochlear implants as miracles, but the interesting circumstances that surrounded the events and writing of this book. We began with the title - that it refers to more than just hearing. Two hours later, we were still going strong, with many opinions and perspectives - but had to stop then because they had to close the building.  I'm looking forward to addressing other groups on this topic. After all, a device that allows the deaf to hear is a miracle - with much to discuss if you listen closely.

And the third book talk occurred yesterday, when I addressed the Morris County (NJ) chapter of the Hearing Loss Assn of America.  Since this group included people with hearing aids, cochlear implants, as well as spouses, I made sure to cover the entire landscape. And that is what is so incredible about my 40 years' experience with hearing loss - it encompasses:

• normal hearing
• a slow degenerative hearing loss that provided experience with all degrees of hearing loss - mild, moderate, severe, profound
• using a cochlear implant in one ear - vintage 1997
• enduring a device failure after 10 years
• understanding what sudden deafness is like - as a device failure plunged me from hearing into silence
• being reimplanted, and comparing and contrasting new technology to old
• using one CI was like having single-sided deafness
• the benefits of bilateral hearing with two CIs - particularly from the user's point of view, not just booth testing

With that as background, I mentioned why my blog is called ASK ARLENE, and why my Walk4Hearing team is also called ASK ARLENE !  And ask they did!  And I also did a booksigning - and I know those books will help others understand hearing loss and cochlear implants.

That's what's been keeping me busy - speaking and connecting with others - on hearing loss, cochlear implants, and beyond.

Cochlear Implant Adventures: Receptive/Expressive Language and the Birds

I've been a cochlear implant user for 14 years, so the sound of birds is nothing new to me - or so I thought.  I could hear the birds with my original CI and was delighted to have birdsong back in my life.  With my newer cochlear implant, I discovered that I could hear the birds from an even greater distance. And when I went bilateral, hearing with two cochlear implants, it was then that I had my first experience hearing where the sounds were coming from - directionality.

In my book, Listening Closely: A Journey to Bilateral Hearing,  I described listening to all kinds of birds, and became familiar with the different species - my favorite being the roseate spoonbill.  I enjoyed saying its name - it involved so many mouth movements and sounds. R-O-S-E-A-T-E  S-P-O-O-N-B-I-L-L.  I felt like a baby babbling - and that's probably what I was doing, getting used to hearing with two ears again, and honing my speech articulation.

Roseate Spoonbill

We're back in Florida, and back to watching birds again - the very same place I discovered bilateral CI directionality three years ago - Wakodahatchee Wetlands.  There are plenty of native birds here in a natural habitat, fascinating to observe - and hear.  I've become good at telling where the bird sounds are coming from.  I've been doing that for three years now, so while it's not a new trick, I still take pleasure in having this capability now.

I was back at Wakodahatchee just yesterday (just being able to say that name is a triumph in itself!) - and it always seems to have something new going on.  Aside from the flurry of activity of baby birds in their nests, I got to have my picture taken with this double-crested cormorant.  He didn't seem to mind posing with me, no matter how close I got.  Maybe he thought I was just another bird - a red-headed white-capped chickadee!

Double-crested Cormorant with Red-headed White-Capped Chickadee

I was getting pretty comfortable being around the birds. One of the bird calls I find easy to identify is the  Red-winged Blackbird.  

Red-winged Blackbird

I knew exactly where this bird was calling from - and, oddly, I started to imitate it.  I never did that before.  It had two distinct calls that I could detect - one a screeching kind of sound, but another that sounded like "ba-JEEB-idda-JEEB-idda"!   It was sitting on the fence railing, listening to me - so I kept singing its song "Ba-JEEB-idda-JEEB-idda"!  And it sat there talking back - looking exactly like the above picture.

I was having fun with this - definitely having a good time conversing with this bird.  I didn't think too much of it - until later.  I usually sleep on things before writing about them - and this little "talk to the birds" episode had me thinking.  

It does seem that,  in general, I've become more gregarious, initiating conversation with people - in elevators, in stores, casually - to the extent that I've noticed a difference in my personality.  Comparing this behavior to just one year ago, I'm finding myself not just content to be able to join in a conversation, or respond appropriately when approached - I now seem to enjoy initiating social contact.  I had thought that came with the confidence of knowing that I'd be able to hear the response.   But that also got me thinking about the vocabulary that speech pathologists use - receptive language versus expressive language.

Receptive language means you understand what is being said - and expressive language is being able to speak to communicate.  I'm no expert in speech development in children, but babies do seem to understand language before they speak it. And part of that process includes babbling, which I've done - and listening to others speak and respond, which I've done.  But the next step would seem to be initiating conversation - which I started doing more proactively about a year or so ago - perhaps at two years bilateral.  

Interesting - I'm a precocious infant again, following some sort of infant/child language launch sequence that began when my second CI was activated.  If I were really 3 1/2 again, I'd be talking to my dolls.  But now, it seems, I'm practicing my expressive language skills on the birds!  

Cochlear Implant Adventures Part IV: Headphones, T-mics and Dolls

My week in California continued - and I was loving every minute of it! The day I spent at Advanced Bionics had been so special, meeting and talking to the entire staff - the very people who created my miracle of hearing.  

I had researched the activities for the rest of the week very carefully - planning to visit friends and places - with practically every moment accounted for.  The Nethercutt Collection, with its vintage cars and amazing music machines, had exceeded my expectations - I loved everything I saw and heard.  From there we headed east to visit friends in Palm Desert.  It was then that we got an education in Los Angeles traffic jams!  What should have been a two-hour drive ended up taking four hours! 

But it was worth the drive - visiting with friends from college, and taking in the fabulous views from their house on the hills.  

Palm Desert Vistas

These friends knew me before I lost my hearing, and kept up all the years since.  The last time we visited them in Palm Desert was when I visited Advanced Bionics last time, in 2009, to do the Connect to Patient presentations (Click here to see that video.)  The weekend was very relaxed - and there's no doubt that improved function with my bilateral cochlear implants contributed to the increased ease of socialization that I felt.  I found myself catching casual comments right away - feeling more connected, not needing repeats. It changed the dynamics of the visit - at least for me, anyway.  

After a relaxing weekend, we headed back towards Los Angeles, stopping to tour the marvelous Huntington Library and Botanical Gardens just south of Pasadena.  This was another "diamond" attraction in the AAA book - and I brake for diamond attractions!  We had just two hours to spend here, so thankfully, we had no traffic problems this time!  We walked straight to the mansion that housed the main art collection.  

Main hallway at the Huntington mansion

When we entered, it was more impressive than I had imagined - seeing that grand staircase, and knowing what treasures those rooms held.   The very first stop was where they gave out the recorded tour guides and headphones.  I always love following recorded guided tours. I always heard them so well with my CIs, just like the recorded books I used for listening practice.  But what happened next was intriguing and unexpected. 

The woman behind the counter handed me the digital tour guide recorder, and then proceeded to put the headphones on me.  My husband looked at me - I looked at him - we both knew that my "ears" were really my Harmony processor t-mics - the ear-level microphones of my cochlear implant processors that allow me to use headphones just like someone with normal hearing.  I thought for an instant to tell the woman about my equipment, but then I thought WHY?  So I just let her put the headphones on me, just like a person with normal hearing.  This is what people looked like walking through the galleries, and I looked just like that, too!

Visitors using the recorded tour guides with headphones

This was actually the first time I had used headphones with two CIs for a guided tour, and I knew immediately it sounded better than I had expected. The sounds were merging as one, and made listening easier.

The Huntington mansion had some very famous paintings, namely Pinkie and Blue Boy:

PINKIE

BLUE BOY

I was expecting to see those paintings - I had read up on this museum, but it was this little treasure that caught me by surprise - Girl Holding a Doll by James Peale, done in 1804.  

Girl Holding a Doll - Peale

I collect dolls, and I also collect pictures of girls holding their dolls.  I had never seen this oil painting before, or even knew about it.  I was intrigued.  One of the most interesting pictures I had ever come across of a girl holding a doll was the one of Helen Keller, taken in 1888, when she was 8 years old.  It was the only one ever found of her with a doll, and it only came to light 120 years after it was taken - in 2008 - the week that my first cochlear implant stopped working.  I wrote about this in my book, Listening Closely (page 38).

Helen Keller with her doll in 1888

I knew I had to buy a postcard of that Girl Holding a Doll painting, and was so glad that the museum's gift shop had them available.  What was rather curious, though, was that when I went to purchase two of these postcards, the cashier asked me about them. I found myself discussing "girl with doll" pictures and my doll collection. What occurred to me later was that even in that noisy gift shop, I responded immediately to that cashier without asking for repeats. My behavior was just "normal" - thinking about what I was talking about rather than wondering if I would hear her.  And I only realized this afterwards, and am still marveling at this experience, because it was so odd to be asked those questions in that busy shop - and unexpected dialogue is the hardest speech to understand.  Score another little victory for my bilateral cochlear implants!

Cochlear Implant Adventures Part II: Advanced Bionics Connect to Patient presentation

Now, on to the day at Advanced Bionics!  If you've read the previous blog entry about my AB visit, then you know I was all set to walk across the courtyard to do my Connect to Patient presentation, and also to meet and talk with AB staff, as well as tour the facilities.  The Connect to Patient program is designed to give staff members an opportunity to meet the patients who use the products they design and manufacture, something not otherwise possible for many of the staff members. This is an inspiring experience for the staff to meet real patients whose lives were impacted by being able to hear again.

I was really, really looking forward to this. I can't even begin to describe my feelings as I walked into that building - the very place that created the devices that had brought me back to life. Even though I had visited three years ago (click to see video), it was all new again. I was a more experienced bilateral cochlear implant user, so I felt a greater confidence - with my own voice, and even how I interacted with others. The feeling of "coming home" was the same, though.  There's no easy way to explain it - just this feeling of connection on an intensely emotional level.

I thought I'd begin my talk by describing the incredible sunrise over the AB building I had witnessed that morning.  But I looked out at the group - a full house - and I just had to talk about this feeling of "coming home."  I told them this emotion was so pervasive that I was beginning to suspect that they had built a GPS system into my HiRes 90K processors! 

From there, I knew just what I was going to discuss - bilateral cochlear implants, the Neptune waterproof processor, my wish list, and suggestions.  All of this would be framed from the human perspective, my perspective - what I like to call "on beyond the testing booth."  I was also now the author of two books on cochlear implants - and copies of my second book, Listening Closely were going to be given to all staff members.  So I wanted to tie in certain excerpts from that book as well. 

My main point about being bilateral focused on "socialization" - relating to others.  The dynamics are so complex, and if you've read my book and some of my blog entries, you'll know that this process is still evolving.  The excerpt that captures this best, and is probably the most important sentence in the entire book, is:

"People treat you differently when they know you can hear them." 

That applied to using the Neptune waterproof processor as well - that people will treat you differently in pools, waterparks and similar venues, if they know you can hear them. And this makes all the difference between watching people have fun or being part of the event itself. 

During the question and answer portion of my talk, one person in the audience, a CI user who was participating in some testing, told the group that my impressions and experiences were exactly like his own - that I had nailed it.  That's always good to hear, but I wasn't surprised because that's a common reaction to my books and talks.

I wanted to end my presentation with something meaningful, so I brought up the excerpt about "creating a masterpiece."   I've used it many times to describe the cochlear implant process - and with bilateral cochlear implants, that metaphor continues to apply exquisitely.  So I concluded my talk with this excerpt from Listening Closely: 

"Thinking about these and other experiences over the past several months -- listening in noisy environments, turning to my name from a distance, the ease of conversations, turning to danger, not talking about my hearing, sitting wherever I please -- these behaviors are literally coloring my personality.  It is not at all like having one ear, where progress seemed to be absolute, measurable, and calculated.  In essence, the masterpiece I am creating this time is more like an impressionist painting - - a Renoir portrait, perhaps?  The shades are subtle, they blend, you can't really see the image clearly unless you step back, and it takes a while to appreciate what you're looking at.  The image that is emerging is someone who can hear even better than before - smiling, shining, confident - and hearing impaired continues to recede farther into the background."

But this time, I didn't stop there - I added a little bit more - a mental image that I didn't have when I originally wrote those words in the book.  Now, I could include that incredible sunrise on the Advanced Bionics building as part of that masterpiece I'm creating in my mind.  It was that uplifting and inspirational - -

 and provided an apt, yet ironic, way to conclude a program entitled Connect to Patient.

Cochlear Implant Miracles: Quiet or Silent

We had a picnic today, somehow managing to find an idyllic spot in the woods that no one else had discovered.  We sat at a picnic table in a covered pavilion, laid out our luncheon goodies, and sat facing the woods.

This was Florida, so we were surrounded by varieties of palms and other tropical trees.

There was no one else there - not a soul.  It was then that I remarked, "It's quiet here." 

And with that remark, my mind began pondering what made it "quiet."  I didn't really hear anything - but yet, it wasn't silent.  There was a slight rustle of leaves and the whisper of a breeze - enough to connect me to this environment.   

I took off my cochlear implant headpieces, and the difference was stark.  It was dead silent - the connection to my surroundings had been broken.  And so, in this simplest of activities - a casual picnic in the woods - I realized that there is a vast difference between quiet and silent.

Cochlear Implant Miracles: Hearing While Wet

The manufacturer of my cochlear implant, Advanced Bionics, has just announced a new processor that is waterproof.  Called the Neptune, it has an industry rating of IP68, which means that it can be immersed in water, so is suitable for swimming.  There has been a lot of discussion about how this is wonderful for children, so they can listen and speak during bathtime and water play - and how the processor is also easy to use for water sports. But this all got me thinking about my own  experiences with hearing and water over the past 40 years (26 years with hearing aids, 14 with cochlear implants) - and the impact of having to remove hearing aids and cochlear implant processors when in and around water.

The experience that my family remembered instantly when I mentioned this subject was the time we were at a beach on the Gulf coast of Florida.  I was wading in the water, no hearing aids on - and suddenly my daughter, who was about 5 years old at the time, yanked me out of the water.  My husband saw a fin that he thought was a shark, but I couldn't hear him calling me - but my daughter saw and heard it all, and was close enough to act.  It turned out that the fin belonged to a dolphin, but the vulnerability of being deaf when wet was graphically demonstrated that day.

I used to swim laps at the Y, but always had to tell the lifeguard that I wouldn't hear his whistle because I couldn't hear without my hearing aids.  I pretty much gave up swimming because I just wasn't comfortable swimming while deaf.  Then, of course, there was the time that I jumped into a pool with my hearing aid on.  I only made that mistake once in my life.

I also shied away from swimming when family and friends were around.  It just wasn't worth it to me to be cut off from conversation and communication just to be wet, watching others frolicking and laughing together.  So swimming with others ended as well.

There were other water activities I did participate in - as I loved whitewater rafting (only up to level 2, with a teeny bit of level 3, maybe).  I had to leave my hearing aids on shore, of course - and on a wonderful trip down the river rapids in North Carolina, we had a guide in the back of the raft, who was shouting out paddling instructions. We knew I wouldn't hear him, so we arranged to have me sit behind the front paddler, so I could imitate the paddling motions.  I was happy to be able to participate, but I still remember feeling "disabled."

We did the same thing down the Colorado River (sounds adventuresome, but in July, it's totally tame.) We had a guide again, and this time I could swim off the raft - silent splashing again.

Another variation was tubing down a river - a wonderful thing to do in the heat of the summer.  But again, with the hearing aids left on shore, another silent activity - cut off from the banter of the others in our group. 

We even did a wonderful river pool at one of the resort hotels we visited years ago in Puerto Rico - Cerromar Beach Resort River Pool (see the middle photo).  I had to do that one deaf too - in a tube that followed a snaking man-made river, going under waterfalls, and ending up in a swim-up bar, with a fabulous view overlooking the beachfront!  It was amazing - except done in isolating silence.  And someone else had to order my Coco-Loco for me.  [I just did a Google search for SWIM-UP BARS  - and - oh my goodness, there are so many now!] 

Same situation with water parks - all done deaf - even though I was the parent, and needed to supervise my children.  The roles were reversed as my family members kept an eye out for me, knowing I wouldn't be able to hear safety alerts, instructions, or anyone talking to me.

We did river rafting in Israel as well - down the Jordan River.  I watched the scenery, but couldn't hear anything our guide was telling us.  I think they filled me in later, but that wasn't quite the same.  On a return trip to Israel, I opted out of that Jordan River rafting activity, and chose instead to go to what looked like an oasis - or the Garden of Eden, for sure.  Natural pools that had been enhanced with waterfalls, for a unique water experience, along with picnic facilities.  I put my feet in the water, but kept my CI processor on.  I was the one who held everyone's belongings, and watched as they enjoyed this incredible experience. 

We once had an opportunity to go wading under waterfalls in Pennsylvania, but skipped it.  We just didn't want to do another "deaf while wet" activity. 

And hot tubs also didn't beckon enough for me to remove my CIs.  Water aerobics classes were out too - not worth bothering with.  The more I heard with my CIs, the less I wanted to trade hearing for wetness, no matter how much fun it might seem to be - it wasn't fun if I couldn't hear.  So even if I was by a pool, I didn't even bother putting on a swimsuit anymore - less vulnerable to being tossed in the water - so I felt safer that way as well.

We took some cruises - with the obligatory safety drills. I was delighted to be able to hear most of the instructions with my CIs on, something I couldn't do when I only had hearing aids.  But in the back of my mind was the reality of my situation if the ship actually did have to be evacuated.  This week's tragic news about the Italian cruise ship sinking made me think of this again.

So now, I'm reflecting on all these experiences - 40 years of not hearing when I was wet - and the decisions on whether to do an activity anyway, even if it meant experiencing that isolating silence.  I don't think people with normal hearing understand fully the impact of this breakthrough - a device that will allow a deaf person to hear in the water.  Like everything else having to do with hearing loss, the silence is invisible - and no one thinks about it until they've confronted it themselves.

Now, with this new Neptune processor available, it's beginning to dawn on me - I can do all this wet stuff and hear too?   Yes.