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Cochlear Implants, hearing loss and more! I carry an interesting perspective: someone who had normal hearing growing up, lost it all slowly as an adult, then regained it with cochlear implants. So I'm deaf, but I can hear - a true miracle. If you'd like to know more about me and my bilateral cochlear implant experiences right away, my two books have a wealth of information - see the links below. Check out the list of upcoming events too - perhaps one day we'll get to meet!


Thursday, March 22, 2012

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!  

Tuesday, March 13, 2012

Cochlear Implant Adventures Part VI: Smiling, Shining, Confident

Now to report on my last day in California - the end of an exciting week that had begun with a visit to Advanced Bionics and a spectacular sunrise.
The view from our downtown Los Angeles hotel on this last day of our trip wasn't quite the illuminating spectacle I was treated to a week ago, but it was still worth photographing - the big sky, the mountain backdrop, the glow from the east.  Here's the view from my hotel window - and if you look closely, you can see the LA Opera building on the right, alongside a partial view of silvery Disney Hall.

Sunrise in downtown Los Angeles

We only had a few hours left to sightsee before heading to the airport, so the pick for the day was Rodeo Drive, that fabled street of luxury stores.  I had always heard so much about it, and it seemed like the ideal place to spend our last few hours in Los Angeles - just park the car, walk up and down the boulevard until we ran out the clock on our week in California.

The experience was as "bling" as I had expected - no disappointments here!  We stopped at every store window, dropped into a few shops to browse, spoke with some salespeople.  No hearing revelations - just a perfect way to see this legendary location in person.  Shoes, jewelry, fashions:

Gucci shoes
Fashion displays

We meandered up the charming Rodeo North side street, with its Tiffany and Versace stores:

Tiffany and Versace shops on Rodeo Drive North

It was right there, as I was window shopping in front of Tiffany's, that my husband suddenly told me to STOP.  He had to take my picture at that moment - the sun was casting its illuminating glow on me!  After viewing the photo, I thought immediately of the excerpt from my book, Listening Closely, that I had read to the Advanced Bionics staff just one week ago, about creating a masterpiece with my cochlear implants.  Considering the hearing adventures of the past week that I've written about in these blog episodes - the music, the casual conversations, the greater ease of socializing - my masterpiece description was coming to life here on Rodeo Drive:

"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."

Friday, March 9, 2012

Cochlear Implant Adventures Part V: LIVE - Jeopardy & Opera!

My whirlwind week in California continued to go according to plan (except for the Los Angeles traffic jams.)   What an amazing experience to see my expectations met and exceeded!  A quick recap - Advanced Bionics visit, Nethercutt Collection, Palm Desert weekend, Huntington Library and Gardens - plus brunches and dinners with friends in Rancho Mirage and Pasadena.  (I like saying the word "Pasadena" - makes my mouth happy.)  Now back to Los Angeles for Jeopardy in the morning, and the LA Opera in the evening - with the beach in between. 

Remember that I'm a deaf person with bilateral cochlear implants, with a long history of dealing with hearing loss.  I have always chosen carefully where I planned to visit and what I planned to do, never forgetting what my preferences are, and my limitations.  Although I watch Jeopardy on television, I always watch it with the captioning on, and I knew that going to a live taping of Jeopardy would have no captions and no assistive listening system available.  I had my eyes wide open on this.  I was confident enough now that I would be able to function reasonably well there.  And as for opera - I have been attending the Metropolitan Opera simulcasts in the movie theaters, so I knew I was ready to experience it live and that I would hear it well enough to enjoy it  - and  invest in the price of the tickets (our live opera tickets cost six times the price of the movie theater version).  It was ironic that both events ended up on the same day, especially considering that the opera and Jeopardy are not every-day occurrences. 

Here's a picture of me right outside the Jeopardy sound stage at the Sony Studios in Culver City, near downtown LA.  
Arlene outside of the Jeopardy studio

Those sound studios are BIG.  We had our tickets in hand, but had to wait and wait until we were allowed to enter the studio and take our seats.  As we were waiting, I struck up a conversation with a woman who was in LA visiting her son.  We chatted up a storm, and discovered we had so many things in common.  I guess it's not surprising to find like-minded people on a line for Jeopardy - but still, it was delightful to make a new friend, something I surely couldn't have done at all without my CIs, and certainly easier to do with my bilateral equipment.  

Here's what the Jeopardy set looked like. We were seated more to the right, so could see behind the contestants.  We learned that they are standing on little elevator platforms that could be raised or lowered, so that all their heads would be at the same height from the front.  

Jeopardy TV stage set

When the show started, I could watch the stage, or view the video screen off to the side. There were no captions, of course, as those are added post-production - and no assistive listening devices.  I was on my own.  I actually did quite well - and interestingly, I could understand the announcer, veteran Johnny Gilbert, best of all.  I could understand his voice without looking and without concentrating.  I couldn't really understand some of the contestants all the time, but if I knew the answers, then I did better than when I didn't.  Verdict on my decision to see Jeopardy?  WIN!  Yes, I would do it again.  Maybe next time as a contestant!  (NOT!)

Having a little fun at the Jeopardy studio

Interestingly, Wheel of Fortune is also taped in this sound studio, so we had our picture taken with this poster as well:

Arlene & Ira at Sony Studios

We spent the rest of the afternoon looking at the Pacific Ocean at Venice Beach, and then realized that getting back to our hotel would involve getting stuck in more LA traffic!  Oh no!  We left too little time to get back to the hotel to change our clothes, so I went to the opera wearing my jeans and sneakers!  (Oh, my!)

Arlene outside the LA Opera

When I researched the LA Opera, I couldn't believe that one of the few performances by Placido Domingo would fit exactly into our plans.  He was playing the title role in Verdi's Simon Boccanegra, an opera I had already seen in the Met movie version, so this gave me an opportunity to compare. 

Placido Domingo as Simon Boccanegra

This opera house looked a bit like the Met in Lincoln Center in NYC - similar outside architecture. 

LA Opera
Inside, it had what most opera houses have now - supertitles over the stage to display the text line by line.  (By comparison, the Met has seatback captions - and the Met broadcasts in the movie theaters display the text as subtitles on the screen.)
LA Opera with supertitle screen over the stage
They also had display screens on the side of the orchestra, near my seats.  

Screen on the side to display the text

I always enjoy visiting theaters I've never been to before, and observing the audience.  Each location seems to have its own style and rhythm.   I could hear the music quite well - the orchestra sounded better to me in person than the Met movie version - a fuller sound.  The soloists, however, didn't have as robust a sound as the movie theater experience.  It seems as though they didn't have the balance right between the orchestra and the soloists. It could have been the sound mixing, the voices, the microphones, or just me.

At the intermission, we looked out from the terrace, and were able to see Disney Hall, the new Frank Gehry building with its avant garde architecture.
Disney Hall by Frank Gehry

That was on my "to see" list as well, so I'm glad we had a chance to see it up close!  

I was really thrilled to have had the chance to experience opera like this - live and in person is like nothing else.  I especially like the curtain calls - the standing ovations, the bravos - on and on and on.  I loved being part of it, live and in person!  And because I had the confidence to purchase these tickets, that I knew I would be able to hear it, I was able to experience the excitement of it all.  Priceless!

Wednesday, March 7, 2012

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:



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!

Monday, March 5, 2012

Cochlear Implant Adventures Part III: Vintage Cars and Music Machines

My visit to Advanced Bionics was everything I had hoped for - so exciting to actually experience carefully laid plans unfold so beautifully well.  Since I had come such a distance, from Florida to California, I had plans for the rest of the week - to visit friends, take in some of the sights, and best of all - go to the LA Opera to hear Placido Domingo, and also see a taping of the TV show, Jeopardy!  

The next stop was the Nethercutt Collection, just down the road from Advanced Bionics, in Sylmar, California.  I had selected this museum because it is a "diamond" attraction in the AAA book, and those are always worth seeing.  I've always reviewed in my mind what sort of listening challenges any attraction would present.  If there are tour guides, videos - anything that would require hearing - I'd always review how I'm likely to do. This time, with my bilateral cochlear implants, I knew I could pretty much handle anything - maybe not 100%, but I had enough confidence that I wouldn't have to resort to any extraordinary measures.  And I was right - as the accounts of my week's touring will show.

The Nethercutt Collection was actually two museum buildings - the vintage automobiles housed in one building, and additional vintage automobiles and an impressive music-making collection in a second building across the street.  The automobile building had no tour guides - just meandering among row upon row of an impressive collection of dozens and dozens of fantastically restored vintage automobiles.  I can't say that vintage automobiles are my primary interest, but it was definitely a worthwhile experience knowing these machines existed, and were now on display for all to view.   Here are a few of the them:

And they even had a vast collection of hood ornaments, with a rare collection made by Lalique, the French glass maker:

The museum across the street required taking a tour to view, which meant that I would have to listen to a tour guide. I've been doing quite well with tour guides, but the reality was that I would still need to stand near her to understand her - and this time, I just didn't want to do that for the entire time. So I made the decision to just sit out her talk about the cars, and look at my surroundings. This was NOT like years past where I couldn't hear tour guides, or needed FM systems to understand the tour guide.  I opted out of this by choice - I wanted to sit and relax.  You'll understand why I didn't mind doing this when you see what I had to look at!   

This display space was supposed to replicate what a luxury car showroom looked like in the 1920's.  You could see why I would have had to get close to the tour guide to hear her - with the high ceilings and marble floors, the acoustics were very difficult. So I just opted out and sat on a couch, needing the time out anyway!  (I wasn't the only one doing this, so I still felt "normal.")

The rest of the museum was upstairs, and included vintage music makers - music boxes, band organs, calliopes, a player grand piano and a genuine vintage Wurlitzer movie organ.  This picture shows the various types of music makers.  

First they played one of the huge music boxes, which had violins, drums, organ pipes, and was run like a player piano with a paper roll.  These were used to provide music at dance halls in Europe, instead of hiring a band or orchestra.  Here's the inside of one of the larger ones on display - this one was made in Belgium (I was listening to the tour guide now!)  

This music experience was a big challenge for my bilateral cochlear implants - I wasn't sure what I would be hearing or what they would be playing, so it was a wonderful surprise to hear the big sound that these machines created!  

They also demonstrated this concert grand piano, that had a player piano mechanism, and 97 keys - instead of the usual 88.  Here I am listening to the music - and imagining what it would be like to play it. The keys were actually going up and down as I watched and listened!  Note that the last few keys on the left are all black - those are the extra nine keys.

Arlene sitting at the 97-key concert grand player piano

And then for the grand finale, they played the Wurlitzer movie organ, which was an elaborate pipe organ with an enormous array of pipes built into the room - all hooked up electronically.  Again, I had no idea what to expect - I really didn't know what they were going to play or what this should sound like in this room.  My bilateral CIs were again being put to the test, for sure.

And, once again, it was simply an amazing experience - to know that I could appreciate the incredible sounds produced by these machines.  And even more telling about how I've been adapting to my bilateral cochlear implants,  I now had the confidence that I could handle and appreciate what I was going to experience - and that is really the point of what these bilateral CIs are all about.  Being able to do what others are doing, and enjoy it.

Thursday, March 1, 2012

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

Now, on to the day at Advanced BionicsIf 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.