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.

Christopher Plummer: Oscar winner and captioned theater pioneer

Like many others around the world, I watched the Academy Awards presentations on Sunday night. I had actually seen many of the movies, thanks to the Rear Window Captioning available at many movie theaters in New Jersey.  I was particularly delighted, though, when Christopher Plummer won his first Oscar ever for best supporting actor.  Evidently, at age 83, he became the oldest actor to win an Oscar.  I realized that I knew something most people probably didn't - that Christopher Plummer was a first in another area of the entertainment industry.  He was the first actor to star in an open captioned live theater production on Broadway.

The year was 1997, and after a triumphant debut of open captioning at the Paper Mill Playhouse in Millburn, New Jersey, the year before, we set our sights on Broadway.  Enlisting the aid of Lisa Carling, director of the Theatre Development Fund's (TDF) Theatre Access Program (TAP), we were hoping that Lisa could convince a Broadway producer to take the pioneering step of open captioning the very first Broadway show ever.

It took a lot of banging on doors, but Lisa finally was successful in lining up captioning of the musical "Jekyll and Hyde" - and we all looked forward to that with great anticipation.  But then we got word that Lisa had also gotten the go-ahead from the producer of "Barrymore", a one-man show with Christopher Plummer in the title role.  I don't know how this came about, but a date to offer open captioning for this show was scheduled before the "Jekyll and Hyde" date, giving "Barrymore" the historic distinction of being the very first open captioned live theater production on Broadway.

There's no doubt that Christopher Plummer must have agreed to this - thus elevating him to hero status for being the pioneer to say yes to this endeavor, which would remove the barriers of exclusion to those with hearing loss who needed the text to enjoy a theater performance.

And so the word went out - with the New York Times running the following article in its September 16, 1997 Arts Section, in anticipation of this historic event:
Device Opens Theatre to the Deaf

When I resurrected this archived article, I beamed it to Facebook, LinkedIn, and Twitter.  I didn't realize that my own name was actually mentioned in the article, down "below the fold" of the ads running in the center of the piece.  But look closely, and you'll see it there, along with Lisa Carling - who convinced a Broadway producer to be a pioneer - and Don DePew, the court reporter who loaded the very first Broadway script into his computer, and scrolled it in synch with Mr. Plummer's rendition of "Barrymore."

We needed to drum up an audience, so collaborated with the Center for Hearing and Communication, then known as the League for the Hard of Hearing.  We had 150 people turn out for that historic performance.  And then, as I describe in my book, Listening Closely, I got my first cochlear implant one month later.

This performance laid the foundation for C2 Caption Coalition - which provides open captioning to theaters across the country - and was the inspiration for Stagetext in the United Kingdom, which was founded in 2001, and provides open captioning of live theater in the UK.  Captioning has also spread to Australia with Captioning Studio providing live theater captioning as well.  And there are other theaters around the country, independently providing this service as well.

But we knew, back in 1997, that to capture the credibility of open captioning of live theater, it had to be done on Broadway - and with that first performance Christopher Plummer made theater history. 

Now go and "share" this with everyone you know!

Cochlear Implant Adventures: Trip to Advanced Bionics in California - Part I

I just spent the most amazing week in California, and I can't wait to write about it!  Advanced Bionics, the maker of my cochlear implants, has its headquarters in Valencia, California. They have a wonderful Connect to Patient program, where their cochlear implant recipients come to talk to their staff about their experiences. Many of the researchers and technicians don't get out in the field to meet the real people who use their cochlear implants, so this is a way for them to meet face-to-face and learn the impact these miraculous devices have on people's lives - what works well, what's on our wish lists, what suggestions we have. 

This wasn't my first time doing a Connect to Patient presentation.  I had come three years ago, while I was writing my book, Listening Closely: A Journey to Bilateral Hearing.  At that time, I was researching certain aspects of the book, and it helped to speak directly with people who were involved in developing and producing my cochlear implants.  I ended up writing about the visit itself, which became a chapter in the book, called "The Visit" (page 151).  The presentation I gave at that time was recorded, and that video is available on my website www.arleneromoff.com , captioned in English and Spanish (see previous blog entry about "Clickable Transcripts").  That visit had been an enchanting experience, so I was truly looking forward to this trip.

My husband accompanied me on this trip, and we flew out of Miami International Airport, into Los Angeles. I've flown on my own before, but it's always easier to have a companion to fend for all the communications along the way (and carry luggage) - so I didn't have to be extra alert, particularly in those noisy environments. It was like flying with a staff - made everything stress-free. The flight was uneventful, we touched down on time, picked up a rental car, and headed up I-5 to Valencia. Our hotel was next door to the Advanced Bionics building, just a short walk across the courtyard.

I was scheduled to spend the next day at AB, doing my talks and meetings throughout the day. I was still on East Coast time, so woke up bright and early - too early, actually. I peeked out behind the curtains, and nearly fell over. My room overlooked the AB building, and faced East. The "dawn's early light" was in front of me, with the sun just starting to emerge above the surrounding mountains.

A spectacular vision was unfolding before my eyes, beyond my imagination.  As the sun rose slowly into view, it cast an illuminating light on the AB building. 

Here I was contemplating how to begin my talk about the miracle of my cochlear implants, and I was being treated to a most amazing and unexpected vista to start my day! 

 The glow on the AB building - especially the significance of that building and what it represented to my hearing and my life - was inspirational.

 I knew exactly how I would begin my talk.

 " I woke up this morning, took a look outside my hotel window, and thought I had arrived in heaven."

Bilateral Cochlear Implant presentation with Clickable Transcripts (captioned in English and Spanish)

If you've been to my website at http://www.listeningclosely.com/ then you may have seen the video links available there.  One of the videos is a presentation I gave on bilateral cochlear implants to the staff at Advanced Bionics, the maker of my cochlear implants, at their Connect to Patients program three years ago.  I was still writing my second book, Listening Closely, at that time, and had only been bilateral for a few months, so it's interesting to see my behavior in the process of adapting to bilateral hearing. 

When I embedded the video on my website, I made sure that it had accurate captioning - and  the Captioning Studio (based in Australia) did a great job. Then it was suggested to provide the captions in Spanish as well, so thanks to Galindo Publicidad, Inc , the video is also captioned in Spanish.  The video can be viewed on the http://www.listeningclosely.com/ website, or click on the screen there to view the Video on YouTube.

But then, the Captioning Studio suggested trying their new innovation called Clickable Transcripts - and that's where the fun begins.  When viewing the video on my website (not clicking through to view it on YouTube), you'll see the entire transcript to the right of the video screen.  Click here to go to the Presentation video with the Clickable Transcripts

You can select the English or Spanish transcript. When you point your cursor to a sentence in the transcript, the video will automatically advance to that part of the video.  That allows you to browse the transcript and go to the portion of the video you want to view. 

There's also the option of putting English or Spanish subtitles below the video. That allows subtitles to be put onto videos that don't have captions. 

Now that I've given you the instructions, it's time for you to go and play! 
 Click here to go to the Presentation video with the Clickable Transcripts

And while you're playing, you'll get a great preview and behind-the-scenes look at my book, Listening Closely: A Journey to Bilateral Hearing 

It's rare to get caught on video in the middle of writing a book - but here it is, with captions. 

Another Cochlear Implant WOW Moment: Are you listening?

Let me describe what happened, then we can discuss it.  Here's the situation:

I was in the living room, sitting at my desk facing the wall, working at my computer, with my back towards the room.  My husband was also in the living room, 15 feet away (I just measured it), talking with my two cousins. I thought I was engrossed in my reading and writing at the computer, yet my husband asked me a question - as if I had been a part of their conversation all along - and I turned around and answered him!  Without a moment's hesitation or skipping a beat!  Way to go, brain!

I was so shocked at doing this - and also because my cousins didn't realize anything extraordinary had just happened - that I had to inform them of the amazing hearing trick they had just witnessed - unannounced and unrehearsed - and never before performed, ever!

Now comes the commentary.  How did my husband know:
a) that I was even listening to the conversation from 15 feet away with my back turned when I didn't even know I was doing that
b) that I could follow this conversation from 15 feet away with my back turned
c) that I could answer his question without asking for a repeat or risk being embarrassed
d) that I could do all of the above when I had never done this before.

The short answer is that my bilateral hearing is still getting "better," but it's not only impacting my behavior, it's also impacting the behavior of those around me.  My husband already knows that I will turn to my name if he calls me.  We've been doing that for three years now (I started turning to his voice three months after going bilateral), so although we still don't take that for granted, it's become routine and reliable that I will turn if he calls.  It's not a leap of imagination to figure out that if I can do that, I am probably attuned to more than just my name by now - casually taking in conversations in range without consciously trying to.  And so it was!

It is also another example of what I consider one of the key sentences in my book, Listening Closely: A Journey to Bilateral Hearing:
"People treat you differently when they know you can hear them."

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.