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: 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.