I’ve been traveling again, and as I have mentioned before, when I book my flights online I always check the “Hearing Impaired” box in the “Special Services” option, but rarely, am I ever approached by the flight attendant with regard to this designation, and never by the gate agent. That fact wouldn’t be as significant if I were an occasional air traveler, but I usually average 40-50 flights a year, if not more. Ah… the blessings of being the spouse of a former airline employee.

During my latest experience, on my flight from Detroit, MI to Burlington, VT, the flight attendant acknowledged (albeit in an unsatisfactory manner) my “Hearing impaired” (airline’s term) status. Without first getting my attention, she asked her question while gazing at me, but mainly looking at my husband as she spoke. Of course, it took me a few moments to realize which one of us she was talking to and what the subject was, since I was trying to read her lips at an angle, and by that time my husband had answered for me–that I didn’t need anything specific because of my hearing loss. I was PO’d at them both. Just because I am traveling with someone who can hear (most of the time I’m alone) doesn’t mean that I can’t be spoken to directly! I was in the kind of mood for this incident to irritate me greatly, so a little education was in order.

Yes, I do rely on my husband to help me understand in certain situations that I have trouble hearing in, but this was not one that I needed an interpreter or assistance for. I explained to my husband that he should have tapped me on the arm in order to get my attention, let the flight attendant know that I read speech/lips, and then directed her to pose her question to me. I know he was trying to be helpful, and sometimes it’s hard for him to know when to, and not to, step in, but I hope my very thoughtful discussion with him helped to define this for him. He defended the flight attendant’s behavior, and I did give her the benefit of the doubt, but she should have approached me directly, as if I was traveling alone. There is a need for some sensitivity training here.

After concluding with the education…  and in case anyone missed it…  NOTE:  WE WITH HEARING LOSS AND DEAFNESS WANT TO BE DEALT AND COMMUNICATED WITH DIRECTLY EVEN WHEN WE ARE ACCOMPANIED BY A HEARING PERSON…  I asked the flight attendant, out of curiosity, why I am so infrequently approached by other flight attendants regarding the “hearing impaired” status, how the fact that I’m “deaf” shows up on the flight manifest, and why she chose to approach me? Motioning a pause, the FA went forward to retrieve the manifest for me to look at, and as I scanned the page, there, underneath my name, appeared the designation “Hearing Impaired”, and also, my name was listed under “Special Services”. Not just one, but two opportunities for the flight attendant to take note that I am deaf! She answered that most FA’s just ignore the designation unless they see that you need assistance–basically, laziness. Sigh…

I’ve become very comfortable traveling with hearing loss/deafness, and the following is the drill I adhere to:

1.  Upon arrival at the airport, when talking with the ticketing agent (usually this isn’t necessary, as I can print out my seat request on the kiosk), I first tell them that I read lips and need to see them speak in order to understand, but occasionally I will get a person that I have trouble lip/speech reading, so I have asked them to write their questions on paper, if all else fails. Most are nice, some seem to have a slight attitude about it.

2.  As I proceed through security, I use the lane specifically for passengers with disabilities (aiport/TSA’s term), if available—not many airports have them. The first time I used this line in Atlanta’s airport, the TSA security agent, I asked, said I certainly was eligible, because of being deaf, to use the “special” line, but another TSA agent questioned why I needed to?? I also got nasty looks from passengers in the long security lines as I proceeded past them to the “Disabled” line. There’s that invisible disability thing coming into play!!

3.  Arriving at the gate, I immediately check in with the gate agent, both to let them know I am deaf, saying that I won’t hear my name called when they have a seat for me (when you fly stand-by you have to wait for a seat assignment, and on full fights it can come at the very last moment. However, some airports have video monitors for stand-by passengers to see when they are cleared to board–major helpful!!), and to check that I am actually activated to the stand-by list, if it is a connecting flight. Gate agents have come a long way with regard to accommodation, in the last few years, and I’d like to think that is partially due to my taking the time to educate those who need educating, commenting when assistance and accommodation is bad, and complimenting when it is good or outstanding.

4.  Once aboard the aircraft, I let the flight attendant know that I am deaf and that while I don’t need anything specific, because of that fact, I do need her/him to know that I will not hear the announcements in case of emergency. Most flight attendants thank me for letting them know this, and on occasion I’ve had them ask the passenger next to me to inform me of any announcement I need to be aware of. Some passenger are taken aback when asked, and others say they are happy to be of assistance.

5.  Once all of the passengers have boarded, I let my seat-mates know that I am deaf and that if they need my attention they should first tap me on the shoulder or arm before speaking. Most are nice about my sharing this information with them, but some are indifferent.  It matters not.

I have found that these  steps take away all of the anticipation of something coming up because I can’t hear, and being diligent and direct makes me a much more calm and in control traveler. I’ve got it down!!

Before the end of my recent flight, I asked for a comment card and smiled as I saw the phrase “Let Us Hear From You” printed at the top. I could have checked the “Complaint” box, but instead chose the “Compliment” box, explaining how nice it was to be asked by the flight attendant if I needed anything, and how this was a refreshing change from the usual disregard my checking the “Hearing Impaired” box in the “Special Services” section nets.  I requested a reply to my comment, but have yet to receive one.  I’ll keep you posted.

Oh, and thanks for the good service and accommodation, Cher!

We all know Audiologists we love but hate to leave because they’re “so nice.” However, we constantly return to them to reprogram our aids and eventually ask for the manufacturers’ rep to come in and help.  For some of us, it’s many hours in the Audiologists office, waiting for an appointment or just getting frustrated and “getting use to it.”   Sorry folks, but no one should have to be told to “get use to it” when it’s the audiologist who is here to help you.  Yes, we have to acclimate to the new sounds we may have missed or even put up with sounds we don’t miss, such as the sounds of flushing toilets, flatulence, burbing and so forth. 

Let’s face it, the reality is, technology, especially hearing aid technology, is changing faster than the speed of light over the past decade, actually it appears to be changing every 6 months.  I fear buying an aid today because there might be something better tomorrow.

  I had seen an Audiologist (unfortunately, with a heavy accent)  last summer who had recommended the “best of the best, top of the line, Widex Mind 440 with its Zen programs (sort of sounds like something out of a Sci-Fi magazine).  The first mistake I made, was seeing an Audiologist who is bilingual with an accent but not in the language I needed her to speak clearly in…English.  Her accent was way too heavy for me to catch what was being said during the audiological testing.  Therefore, we never really got a true reading on my word discrimination.  This was my fault and she and I should have discussed it openly and honestly.  We didn’t, because I know people who love her and are happy with her but they are all Asian. And I guess, she did not want to discuss it with me, because she may have thought I would not recommend anyone.   However, she is someone I would continue to recommend to my Asian clients to.  This was totally my fault.

The Audiologist felt the Widex was perfect for me, yet she could not get the programming quite right for ME.  We had the rep come in twice (which meant waiting additional times to coordinate appointments) and who immediately felt that the instrument I was recommended and wearing for the past month, was too high powered for me.  Jeesh! wouldn’t an Audiologist know that?  Well, as it turned out, the rep had the Widex 440 in a lower power model and she loaned it to me until a new one would arrive with a new trial period starting the day I receive the new aid.

I waited another two weeks, received the new aid but low and behold it did not have the controls I had initially requested. By the time I received the correct model and tested it for another 45 days (which brought me up to 4 months with the hearing aid), I decided the aid was not for me.  I felt that music sounded off, background noise was bothering me and all in all, the reality that this Audiologist was just not getting it right, meant I had to be selfish.  I returned the hearing aid, I was down $300 but felt the time put in to my visits were well worth this so called restocking fee.  Why they call it a restocking fee is beyond my imagination.  It’s a fee that goes to the Audiologist for their time spent with you and personally, they should get that fee if they have given you the time. We parted on good terms and no hard feelings.

What to do next?  I was actually somewhat embarrassed, as here I am in the field working with many audiologists, clinics and top surgeons, yet I could not find myself an Audiologist who I can trust to know what I need.   I spoke to friends in the field and finally after spending alot of time researching, decided that buying a hearing aid is truly a job.  You’re not only shopping for the right hearing aid, you’re shopping for the right technology savvy Audiologist who can look at you as a whole person and not just as a potential buyer.  

I can fully understand why 1 out of 3 hearing aids for senior citizens land up in their night tables. However, I do believe the numbers are higher.  I spent hours going back and forth to the Audiologist last summer through the end of October.  Can we really expect that from an elderly consumer in order to get a proper fitting?  In my case, I truly got lucky.  A good friend of mine who happens to be an Audiologist and colleague, recommended an Audiologist who I so happen to have on my list of referrals for my clients.  She swore to me that he is a whiz at programming aids.   I never recommended anyone to him because the distance for my clients would make it difficult for them to do follow ups, which are so important at the beginning, when purchasing an aid.  In all honesty, it was not the easiest location for me either but I decided if he’s good at what he does, it’s worth my time and efforts.

My first meeting was a real eye opener. Mr. Audiologist asked me several questions concerning what I felt I needed to benefit most from in purchasing hearing aids (in my case one hearing aid).  We discussed my trial periods with several aids, those I was not willing to look at and left the rest up to him.  My first meeting with him took a bit over 2 hours…..wow! that alone impressed me.  I’ve never ever had an Audiologist spend that much time in getting to know my hearing needs. 

In the end, he felt I could gain a great deal from the Oticon Agil Pro.  Due to my work life and social life, I ordered the streamer as well.  When the aid arrived, I promptly received an appointment, tested out the equipment and he wanted me to make another appointment whether I felt I needed it or not.  Before my next appointment, I made a list of concerns, questions, likes and dislikes (which there were none).  My third appointment was great and I truly felt blessed with the new equipment.  He had wanted me to return before the trial period was due but I did not feel that was necessary but made an appointment for August.  I have since received a snail mail from his office telling me how proud he was about my adjustment to the new aid. I gather he does this with all his clients and though I really did not feel the need for this feedback, I must say, that for those who need more time to acclimate, it is certainly a good and well intentioned letter.

So, my purpose in writing this long post is to say, there are excellent Audiologists out there who know what they’re doing and that sometimes, going the distance is well worth it.  I have always been an advocate to have aids fully covered by insurances and still am.  However, since I am lucky enough to afford the technology, I am grateful to have it and wish everyone could.  We need to keep advocating, we need to keep writing our Senators and Congressmen and women. Afterall, a day will come, when they too will need this technology.

But anyway I was just learning about self-disclosure and trying on different labels– hard-of-hearing, deaf, etc.– when I glommed onto hearing-impaired.  The nice thing about the phrase ‘hearing-impaired’ is it implies nothing about how you communicate.  It seemed perfect.  Hearing people understood the phrase way better than hard-of-hearing.  (Please bear with me here if you find the phrase offensive.  I‘m not done.)

So I was up in the mountains skiing one beautiful day.  As I got off a ski lift, I felt so healthy and full of life.  If you have ever seen the sunset reflect pink and gold against the snow, that’s the kind of day it was.   And I was at the top of a mountain looking out over beautiful snow-colored valleys in every direction. Glorious– just glorious!

At that moment, I felt so lucky it was my hearing that went bad instead of my legs.  I thought of all the wonderful things I could still do instead of what I could not do.  WOW!  I could ski!  I could hike!  I could swim!  I could ride a bike!  I could do ANYTHING!

Then it happened.  A  double- amputee whooshed by on a sit-ski.  I still laugh when I think of it.  THIS guy had no legs and he skied even better than me.

That‘s when I stopped telling people I was ‘hearing-impaired.’  Disability/impairment is all in your mind.  Many  times I’ve been told that I’m a good listener.  I think it’s because I look people in the face when they’re talking.  Go figure.

It’s sort of humorous that I’ve known since I’m 19 years old, that I have Otosclerosis and that its a progressive disease.  However, when the Doctor at that time told me I would be deaf by the time I was 30 and did not go deaf, I ruled that the Doctor had no idea what I truly had.  And so, years have gone by and only recently, have I noticed my tinnitus had become incredibly loud  along with dizzy spells. 

The current Doctor explained that my audiogram looked as if I had Otosclerosis and that I would need to have a cat scan on my good ear.  He was concerned that the Otosclerosis may be spreading, possibly causing me to lose hearing and feel dizzy.  Though I had a hearing evaluation 8 months ago, he asked that I get a more recent one done.

Well, yesterday I did just that and the results were that my hearing went from mild to severe to moderate and profound.  Shock and disbelief almost gave way to denial, but being in the field of working with deaf and hearing impaired, I knew I had to deal with this and be as realistic and prepared as possible.  I was now very close to the severe range in my low frequencies when I was once on the upper mild range.

In two weeks I’ll have a cat scan and hopefully some news as to how much bone deterioration there is and if I am too lose more hearing, what time frame am I looking at.

What are my fears?  Well, first off, that I’ll never hear music again, that I’ll never hear my friends voices and worse, I won’t hear myself or my breathing.  I’m not running scared but I need to know what I’m dealing with or what I will be dealt.  The fear of being alienated and islolated from people is very real and though my girlfriends quickly responded with, “we’ll learn sign language,”  I know that girls night out won’t be the same.

For now, I want to feel that I have choices, that my options to wear a hearing aid successfully will be realistic and that control of my own life won’t be lost to dependence.

I thought to myself, I’m working too hard, I’m way too stressed, I just need a rest.  Outside of the fact that I had just returned from vacation, how much rest does one need?  In anycase, I did not rush to panic but rather waited a few days.  And as my world began to lean more to the left, my vision of everything in front of me appeared to move while my head stood still.

As the days came and went, my head went from positional vertigo to just feeling spin offs while sitting perfectly straight. I started to feel like the balls in a bingo machine being rotated.  B4, I15, O54.   Being hearing impaired and working in the field of deafness and hearing impairements, I know all too well that there are several planets I could be headed for. However, I’m still hoping that I’m just over stressed and that everyone I’m looking at is unbalanced and I’m fine.

I try not to panick because panic just clouds our ability to control and be in charge. So, here I wait for my Neuro-Otology appointment, which by the way, would have been a three month wait had I decided to go with the Dr. who takes my insurance.  My choices were wait or see another Dr. and pay up front only seeing maybe 1/8 of what I pay in.  But at this point, I want to know what it is I am dealing with. I feel as though I’m at a black jack table and not knowing what the next card is.

Is it Menieres? Vertigo? or worse scenario, a tumor?  Would I rather have menieres?  What type of choices are these?  In anycase, I will try to keep my sense of humour in all of this because without it, I’ll certainly go into panic mode and land up on Planet Mental, probably taking meds that would make my symptoms even worse.

To be continued.

 Look at computers, headphones, cellphones, xerox machines, fax machines, TTY’s, even televisions and radios. They all went from large to small and improved. Televisions stayed large and went to very thin as well.   Now, lets look at the hearing aid. Hearing aids started out as horns, something looking like the Shofa used on the Jewish holidays.

The first real hearing aid by Sonotone with a transistor was put on the market in 1952 for $229. In fact, AT&T (American Telephone and Telegraph……remember them?) gave out free transistor licenses in honor of Alexander Graham Bell. Without losing a beat, companies began producing their own aids and competing.

Acousticon put an aid out soon after for $74.50. The hearing aids were powered by batteries and worn around the waist. Could u imagine if the competition continued with prices like the ones mentioned to this day? Anyway, my point is that hearing aids have always been small, but they never quite improved and never got cheaper the way other technology has. In fact, the hearing aid price is so varied and so steep and so difficult to shop around for, that most buyers will not price them the way we do when buying a car. Not one single audiologist I’ve met or discussed with friends, have a hearing aid pricelist on their wall.

 Sure, we have the directional microphones and the programming of the aids for different environments and background noise reductions. We have the options of digital, digital programming and analog. All promising maximum speech understanding. Did u ever wonder whether it was all a gimmick? I mean, after all, hearing aids don’t provide 20/20 hearing, so why make promises u can’t keep?

All I know is that when I cut the background noise out on my hearing aid, with that advantage comes the downside, the voice i’m listening to is now lower as well. Or when there are two speakers, one behind me and one in front of me, my directional mics seem to get a little ditsy and neurotic. Point being that for some reason, the hearing aid industry has changed asthetically but not really technically. They have their new state of the art micro style differences, the ergonomic designs made especially for the boomer generation who has become so vain and forgotten their roots. And I just love when a company states, u won’t even know you’re wearing them……duh! never in a million years. I am constantly reminded that I’m wearing my aid. Whether from someone’s dumb question of “are u wearing your aid today” to “is your aid working,” or whether I am experiencing feedback that day or my ears are itching from the molds.

Naturally, I’ve accepted that hearing aids are not the perfect solution but they give me the best situation for my hearing loss. I would have preferred the aids have been more miraculously improved without convincing us they are so dynamically tuned for our specific hearing loss and that our ability to hear will be a miracle. And whats with the tiny battery? How do they expect the largest population of hearing impaired people to put that little battery into that little thingie compartment? Oh yes, they came up with a solution to that, a tape attached to the battery. And don’t forget about what happens when dropping that little battery on the floor. It’s amazing to watch a group of seniors on hands and knees looking for that stinker. It’s also amazing to see how far that little battery can travel when its not even on.

 I never lead anyone to believe that hearing aids are the all or nothing solution. Its just a temporary solution to a problem that can’t seem to be fixed by medical science thru other means, yet.

During this past summer, after a great deal of research, I purchased a $3,200 hearing aid.  You read that sticker price correctly and that was for one aid.  I tried it out for the 2 full 45 days, that was a total of 90 days due to when the rep came in to see me, she gave me a different model of the aid I was trying out that I liked better.  So they gave me the aid until the one I was purchasing came through and that day was the day my next 45 days started.  I landed up giving it back on day 105 (total days that I spent with this hearing aid which included the time I was loaned the model) and taking a $320 loss.  But hey, in all honesty, the audiologist should get paid for all the time she spent with me and trust me, she spent at least one day a week with me. I made the decision to go back to my cheap old hearing aid.

I did learn something that I did not want to face and that was, I am truly convinced that many (not all) but many audiologists cannot be  brought up to date properly due to the constant and rapid technology changes.  I am also convinced that the hearing audiologist DOES NOT UNDERSTAND HEARING LOSS as in, please don’t speak to me when the aid is out of my ear because I cannot hear you and I am not a great lip reader. 

 In the meantime, all I want is a hearing aid that works better and works to my benefit. I couldn’t care less about all these ergodynamic state of the art designs. After all, I don’t expect anyone to say, ay Pearl, cool hearing aid you got there in your ear!

You never know what you’re going to get with hearing loss. Sometimes life will surprise you and be pretty good.

A pretty good example of this would be my bi-weekly swim class.  I swim unaided.  There are about fifty women in my class.  You can imagine how the locker room sounds afterwards; women chatting, water and hair dryers running, locker doors squeaking open and slamming shut, toilets flushing.   I hear none of that.   I shower, wipe off, get dressed and dry my hair all in relative peace enjoying alternate sensations of the locker room experience—a warm shower, combined smells of body lotion and chlorine, hot air on my scalp.

Finally dried and dressed, I put in my hearing aids.  ACCKK!  NOISE!  PAIN!  Shower water blasts against tile.  A bathing suit drying machine spins into hammering thumps.  Fifty hair dryers sound like jet engines revving to take off.   Metal lockers clang open and shut continuously, as women shout to each other over the din.   I head for the quiet peace of my car as quickly as possible.

It has been six months since I got the Phonak Naidas.  I’m not sure I’ll ever get used to the noise.  While I am extremely grateful for the new clarity in speech understanding, I have to admit many other environmental sounds are unpleasant.   A normal ear miraculously filters out all that unwanted noise.  People with normal hearing might be vaguely aware, but locker room noise is not painful to them.   There are no words to describe what I hear.  The technology that allows me to hear t’s and s’s, called frequency transposition, is relatively new to the human experience.  It is anything but natural.  Nothing can replace natural hearing.

I am mostly happy with my hearing aids, but I’m just as happy to take them off when communicating with other people isn’t crucial.  I have the option to turn on my aids and socialize, or to enjoy the quiet.  All too often I choose quiet.

So what’s this got to do with hearing loss?  Nothing.  Except that those of us who lose our hearing are often told, “There are worse things,” when we open up about our feelings.  And it’s true.  There ARE worse things.  We all know it.  I could name at least ten people who have suffered more than me.  Truth be told, if I were to rate my life, good fortune would far outweigh the hearing loss.  I have even been able to put a happy spin on going deaf from time to time.

For example, people often remind me how lucky I am to be able to sleep soundly.  Only it’s not quite true.  I hear footsteps in the night because of my good low tones.  Since low tones are only thing I hear well, the sound of people walking across wood floors in the night seems over amplified.  There are many sounds I have wished I could hear at night—a soft rain, fire alarm, a mosquito buzzing around my face.   It’s a fact that I sleep right through my neighbor’s barking dog though.  For that I’m grateful.

And yes—I can see the humor in hearing loss.  Almost all my hard of hearing and deaf friends have replied back to burps and farts, thinking someone actually SAID something meaningful to them.  Most of us have funny stories about misunderstandings caused by hearing loss.  Looking back I can laugh about the time I high-fived a friend when she said she was getting a divorce.  I thought she said she was getting a new horse.  Hearing loss can be uproariously funny.

But it’s also serious.   I realize my hearing loss isn’t on the same scale as losing a child, and there are advantages to being able to sleep through a barking dog.   It’s still a loss.

I can’t imagine reminding a friend to count her blessings after she lost her job.  Would I tell her she’s lucky she can talk on a phone because it’s really hard to get a job when you can’t?  Would I tell a friend she’s lucky she doesn’t have to spend money at a beauty salon after she lost her hair from chemo treatment?  Would I joke to a blind person that I’m going blind too, then repeat a funny story about not being able to read a menu in a restaurant and how I needed reading glasses?  What?!  You don’t think that’s funny?!  Well that’s part of your problem.  You just need to see the humor in going blind, you see. . .

Most of us with hearing loss live in quiet pain and isolation for years while our hearing dwindles away to nothing.  If we are lucky, eventually we find a group of people who have experienced hearing loss.  People who understand.  They don’t remind you to count your blessings because they know you already do.  They don’t tell you how lucky you are that you can’t hear things at night.  Most have a heart-wrenching or scary story about not hearing things in the night.  They don’t make jokes about going deaf.

They know it’s not funny most the time.