MASKS in a Pandemic!

    As we all know by now, opaque masks make things very difficult for people with hearing loss.  The problem caught the attention of the press, and I was interviewed for an article for the North Jersey Record.  I was also asked to sit for a photo session, and give a two-minute narrative on the impact of masks for people with hearing loss.

This all went quite well, as I was also able to refer the reporter to others who had the perspectives he was seeking.  And so, as expected, the online version came out on July 10th, with the video also embedded in the online article. The video was OPEN CAPTIONED, at my request, so it was accessible to people with hearing loss as well as the mainstream.

I subsequently learned that the print edition came out on Monday, July 13th because my friend contacted me and said I was on the FRONT PAGE of the newspaper!  YIKES!  

Well, my objective was to get this information out to the mainstream, and this sure did it!

SOOOOO - - - - Here it is - the online version, which also includes the video.

North Jersey Record Mask Article and  Video

And here are photos of the front page coverage which appeared in several of the syndicated editions of the North Jersey Record.

NE Cochlear Implant Convention - persistence of memories

The  Northeast Cochlear Implant Convention 2013 is coming up next week, being held at the Holiday Inn, in Boxborough, Massachusetts on July 26-28.  This year, I am one of the presenters - doing a session on bilateral cochlear implants on Sunday, July 28 at 9 AM, and also doing a booksigning on Saturday, July 27 at 4:30 PM.

The history of this convention runs deep for me - I was at the very first one, held  in June of 1997, researching my own cochlear implant options.   I wasn't alone, either - it was there that I met many of what became a close-knit group of "first generation" cochlear implant users.  We weren't exactly pioneers, but cochlear implants weren't exactly commonplace yet either. 

Those were the days when you had to have very little hearing left to qualify - about 20% using hearing aids.  I didn't have to worry, though - my hearing at that point was just 8% in my "better" ear.  I met people like myself, researching their options - and I also met people who had already gotten their CI's.  I didn't have to be sold, though - I was desperate - my long journey from normal to profound deafness had reached its ultimate destination.

I made a return visit to this convention in 2001, to sign copies of my first book, Hear Again - Back to Life with a Cochlear Implant.  And now, in 2013, I'm looking forward to talking about bilateral cochlear implants, and also signing copies of my second book, Listening Closely: A Journey to Bilateral Hearing.  

 I have to smile at the thought of returning to my "alma mater" once again this year, as a member of its original graduating class.  

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 Implants Meet Motor Vehicles Bureaucracy

It would seem that a simple trip to the Motor Vehicles Bureau to renew a driver's license should be no big deal. With totally normal hearing, that would certainly be the case.  Just bring the proper forms, stand on this line and that line, take a photo, get the license and be on one's way.  With a hearing loss - no matter what the level or mode of communication - it is not quite that simple.  My recent experience - a trip to the Motor Vehicles Bureau to renew my driver's license - is a case in point.

Of course, now that I have bilateral cochlear implants, I'm much better equipped to handle a situation like this - certainly better than before. I could go there with some degree of confidence, but it was still a minefield of unknowns.

The adventure began with the renewal form.  In New Jersey, there's a box that asks if you have any physical condition, and a place to explain.  I had heard from other people that New Jersey was requiring some sort of letter from a hearing professional certifying that a person had a hearing loss, so that it could be indicated on the driver's license.  Hearing is not a requirement to drive, but I pondered whether I should check off "YES" to a physical condition. There was nothing about needing a letter - just that YES/NO question.  I checked off YES, and put "hearing loss" as the explanation.  I wanted to be totally honest, since the form required my signature attesting to its accuracy. And with that YES began the great unknown.  What would they do with that information?

My mind raced to previous experiences - like in New York many years ago, where they actually gave me a rudimentary hearing test right on the spot!  Or when I tried to get hearing loss indicated on my New Jersey license, but the woman looked at me and said I was hearing her fine. (I was lipreading most of what she said.)  So with that as background, and having that YES box checked, I was no longer like the hearing people standing on line with me.  I was not having the simple experience they were having.

I clutched my papers as I inched towards the reception desk.  When it was my turn, I watched the agent carefully as he went through my paperwork. This was the first challenge because these people look down at the papers, and talk to you at the same time - so no lipreading.  And I understood him - so there was no indication of hearing loss there.  He looked at my Passport, my Debit Card, my Driver's License. And then the Renewal License application card with that YES box checked - the longest moment of all.  No comment at all about it - just proceed to the next desk.  A sigh of relief, but on to the next trial.

At the next desk - again they checked all the papers - again they looked down as they spoke to me - again I understood what they were saying.  And again, they didn't do anything special about that YES box checked off.  Just follow the red line to the next station.  Another sigh of relief.

The next station was really a test of directionality - and I was hoping my bilateral cochlear implants were up to the task.  There were six agents with the line feeding from the middle - so three were to the left and three were to the right.  I would need to know which agent was calling out "NEXT".  I wasn't sure if I could do that - but sure enough, I heard something to my left, and saw a woman waving her hand to come over.  Again, they talked while looking down at the papers.  Did I want to keep the picture from my previous license - YES. How was I going to pay?  Swipe the credit card when I'm ready.  I followed all the instructions - and she handed me my new driver's license.   I did it!!

I looked at the back and it said "No Restrictions."  So, for all the doubt and worry, I came through fine.  I don't know what would have happened if I weren't able to hear well enough to get through this process without raising awareness about my hearing loss.  That's the unknown here.  But the reality still is that something as simple as renewing a driver's license is just not simple for anyone with a hearing loss - even if they can hear.

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.