HAHA.

Selective hearing.

This never fails to make me cringe.

It’s not selective hearing at all.  It’s normal hearing loss.

Not to be a wet blanket or anything, but at that moment I usually feel the need to explain the speech banana.   How one of my low tones is normal and how I’m deaf in the high tones and that hearing aids can’t offer enough amplification so that I can hear s,f,t, or k– but that without hearing aids I can hear the m and b sounds.  And that this means if someone says, “Kate took the cake” I won’t understand, but if they say “Bob’s bringing mom home,” I will.  And also if there is a lot of background noise, like someone coughing while someone else is talking, I might not even hear that much.

The speech banana

If you are close to someone with hearing loss please try to familiarize yourself. The only thing worse than having hearing loss is being accused of pretending to have hearing loss.

And WHY would someone DO that anyway? Especially someone who never pretended to have hearing loss in the past??

 ”Greetings – I just had to complete an on-line training course in “Diversity”. There was a question that asked what preparations should be made for an interview with a person known to be deaf. The answer included having a hearing loop ready. My response was that a hearing loop would/could assist someone like me with a hearing impairment, with suitable aids, but not someone who was deaf, because my understanding of the word deaf is that it means total hearing loss – the same as “blind” means total loss of sight as opposed to a visual impairment. I’d be interested to see responses about how others describe themselves – i.e. deaf or hearing impaired.”

I don’t mean to pick on this person. If anything, I see both the question and answer as yet another example of the pervasiveness of confusion over the definitions of the words deaf, Deaf, hard-of-hearing and hearing-impaired. Why the heck do the deaf have so many labels? It’s interesting.  There seems to be little confusion over blindness. I have met legally blind people who had their driver’s licenses. OK– yes that does seem strange, but it’s true.  Some can read large print books, and use ADA accessible computers with large lettering.  We still consider them blind. It doesn’t always mean living in total darkness.

But for some reason, when it comes to being deaf many people believe a person has to be completely without sound to qualify as ‘deaf.’ And yet, few deaf people hear absolutely nothing.

Here is the dictionary meaning of deaf from the Cambridge on-line dictionary.

deaf adjective /def/ Definition • unable to hear, either completely or partly He’s been totally/partially deaf since birth.

You can take your pick of any English language dictionary. I have also looked at the Oxford, Merriam-Webster, Longman Contemporary, and MacMillan on-line dictionaries. The meaning doesn’t change from one to the next.  The word ‘deaf’ can be applied to people who cannot hear well, or those who cannot hear at all.

Many partially deaf people are reluctant to use the word ‘deaf,’ because there are other options that also mean partially deaf.  I guess that’s why it’s so confouding to figure out what to call ourselves– Am I hard of hearing?  Am I hearing impaired?  Am I deaf? If you need any kind of accommodation I would answer yes to all of the above.

To complicate matters further, there is the capitalized Deaf word, not found in the English dictionary, which is the ASL cultural designation of people who use sign language.   A  person can be quite deaf and still be able to speak clearly, especially if they became deaf later in life.   This person may be unable to hear a thing, but choose to lip read and speak in a one-on-one interview in a quiet looped room.  Likewise, someone with only a moderate hearing loss who grows up signing in a family with Deaf parents and siblings may choose to identify as a Deaf person, even though he or she might hear really well with hearing aids.  In other words, a deaf person may be Deaf or deaf.  These are just two examples of people who don’t fit neatly into a box, but I can think of many more.

For this reason my answer to the above question on how to prepare a room for an interview with a deaf person would be to simply ask what, if any, accommodations will be necessary when you set up the appointment.  Let’s assume the choices might be 1. ASL or Oral interpreter. 2. Looped room 3. CART 4. Nothing.

Because the official definition of ‘deaf’ encompasses partial to complete hearing loss, it would be wrong to assume anything about another deaf person, or that I might be able to guess what accommodations might be needed without asking.

But before we get to that chapter he demonstrates how seemingly intelligent people (students at MIT) made illogical choices in study after study because of a simple human behavioral quirk he calls the relativity factor. It goes something like this. If you give a person three choices A, A- and B, and you price them accordingly, with the two A’s being almost the same and one of the A‘s a little bit cheaper, both A and B will be thrown out in favor of A-. If you offer just A and A-, they will choose A-.

With new products people often don’t know what a good price should be, and may not feel confident buying it because there is nothing to compare it to. Among other things, Ariely used the Williams-Sonoma bread machines as his example. When bread machines were first introduced people weren’t buying them. After consulting with a marketing firm, Williams-Sonoma introduced the new “Deluxe” Bread Machine and priced it fifty percent higher than the original. There was actually no reason to price it fifty percent higher. It wasn’t fifty percent better, and wasn’t much improved over the original. It seems counter-intuitive to introduce a new more expensive product on top of a failing product, but amazingly it had the intended effect. When consumers could compare two bread makers, the original cheaper bread makers began selling like hot cakes. That’s how relativity works in marketing.

I have been thinking about how Ariely’s relativity chapter applies to hearing aids. Back in the 1990s when digital hearing aids first came out, it was unthinkable to buy a pair of hearing aids for $6000.00. It’s funny because I can see now how sneaky they were in introducing the digitally programmable analog hearing aids at the same time. That would be Ariely’s A- choice. They weren’t digital hearing aids and they weren’t just plain analogs. I can’t remember what I paid now, but the cost was in between the plain analogs and the full digitals. They seemed relatively reasonable. Eventually when I bought my first pair of fully digital aids, the extra $1000 didn’t seem like a huge leap after being primed with the inflated price of the digitally programmable hearing aids.

In his chapter on supply and demand, Ariely discusses numerous studies on another concept called “arbitrary coherence” and its application to price anchoring. Apparently we get attached to paying certain prices for certain items and it‘s hard to move us away from that price. Once we‘ve formed an attachment to a price we will continue to pay it even it if it’s a ridiculous price. A good example was people moving from Lubbock to Pittsburgh will squeeze into an uncomfortably smaller home, while a family moving from LA to Pittsburgh will move into a absurdly large mansion. It’s all in what you’re used to paying for a home. The idea of paying a different price will be distressing for many people because they always pay THAT price.

So the big question is how do you get someone to pay $4.00 for a cup of coffee at Starbucks that only costs $1.00 at Dunkin Doughnuts? And more importantly, how do you get people who normally pay $3000.00 for a pair of hearing aids to feel comfortable paying $6000.00?  According to Ariely, you have to convince them their experience will be very different when they pay $6000.00 as opposed to the $3000.00. At first a person may be reluctant to try it.

Studies have found that putting objects in fancy packages will make people rate them higher. This should come as no surprise. For example, while rating coffee or wine, over and over researchers found that the same brands were rated higher when they were sampled in fine china or crystal on a linen table cloth with a bouquet of flowers and a little dish of candies, as opposed to being rated in paper cups, no table cloth with a garbage can next to the table.

Starbucks didn’t do the fine china thing, but they created an exceptional ambiance that convinced consumers they were buying a new coffee experience, not just a plain old cup of coffee. The hearing aid industry has been working on its image too. Years ago, when I was in my early 20s and got my first pair of hearing aids, they were beige and came in an ugly brown pouch. The care pamphlet I was given had drawings of old people on it.  Today hearing aid pamphlets show glossy photographs of busy families walking in the park and riding bikes. You can’t tell who in the picture might be wearing the hearing aids.  No one looks very old.   Also, in the past seven years hearing aids have been coming out in sleek new shapes and colors never before seen in audiology.

Suddenly we are calling them hearing “devices“ because they are so much MORE than a hearing aid. This is not unlike Starbucks renaming their $4.00 coffees to the French sizes “grande” and “venti” to give the customer a more cosmopolitan experience, helping to justify the $4.00 expense. Your hearing aid is no longer just an aid. It’s a device- a technological wonder with bluetooth capability and automatic everything!

And the new mottos! “Life is ON” “The energy of understanding!” It makes you feel so ALIVE! I don’t recall hearing aids having mottos in the past.

And look at the names of the hearing aids– “Fusion, Agil, Motion, Solana, Nitro. . .” They could almost be rock bands, or athletic shoes, or sports cars! The hearing aid industry isn‘t selling hearing aids anymore. They‘re selling life.

This is why the average pair of digital hearing aids cost $6000.00 today. It has nothing to do with supply and demand.  If you are in the market for a new pair of hearing aids, I cannot tell you what to buy, but please consider shopping around.  Try several brands aids out including the so called “cheap” brands.  You might be surprised!  This consumer guide may be helpful to first time hearing aid buyers.

In fact, nothing amazing has happened to hearing aids in over a decade unless you count blue tooth, and that’s not really new technology.  It’s new on hearing aids, yeah, but it’s so not new.  It was only a matter of time before someone stuck bluetooth technology in a hearing aid– a no-brainer really.   You had small phones the size of a hearing aid.  Why not actually stick the technology IN a hearing aid?  It wasn’t developed for us.

Many things on hearing aids have become automatic, but not better.  For example, most of us who have worn our hearing aids for years  prefer controlling when our FM kicks in.  If you have ever been to a convention with a room full of hard of hearing and deaf people, you don’t want your FM kicking in every time someone walks by with a Smartlink.  Soooo annoying.  I also prefer to have control over when my “speech in noise” program kicks in.  I don’t like my aid muffling sounds for me.  Sorry.

I am getting off the subject– my point being that there is not much new going on in hearing aids since the 1990s, so they should have come down in price by now, but they haven’t.

There is one area I forgot to mention here and that is the open fit aids.  They ARE new and literally cool because you don’t have to wear ear molds.  But if you have a severe hearing loss you can’t wear them, though many audiologists will try to sell you a pair, knowing you’ll be back in a couple years needing more power.  Even though open fit aids are not power aids and often do not have FM, they cost about the same as a power aid with more on it.  So basically you’re paying MORE for LESS!

Back in the 1990s, when digital hearing aids were the new thing, hearing aid companies believed we would pay nearly twice what we would pay for analogs, so they upped the market price to  $6,000.00 for a pair of state-of-the-art power aids.  If you balked you were given some rhetoric about how hearing aid wearers were a niche group and that the technology was developed specifically for us, and that we had to pay for it somehow, and how much was your hearing worth to you anyhow?  Isn’t your life worth it?   Now, over a decade later we are STILL paying that same price.

But hearing aids haven’t improved much.  We have been trained to expect to pay $6000.00 for a pair of state-of-the-art digital hearing aids.   And pay we will.  Because we have no choice if we want to hear.  Or do we?

Do we really need automatic everything?  Do we need bluetooth?  What would happen if we all shopped around a bit?  And demanded less?  What I mean by that is what if we were to start demanding no frills aids, no automatic anything with lots of power and FM for a good price?

Just say no.  They won’t get the message if we keep spending.

Last Saturday night I decided to check it out.  After dinner and drinks I suggested to my husband that we hit a movie.

“Nothing will be captioned at this late hour,” he said.

“Let’s just check.  I heard they’re captioning everything.”

“Are you kidding?  No way.”

There was a theater three blocks away so we swung by to ask.  Imagine our surprise when the ticket chick produced two cool pairs of captioning glasses.  They looked a lot like these 3-D glasses, only they were black and had a small black box attached with a cord that you wear around your neck.

They came with three controlls on the side to adjust font size, distance, and language. LANGUAGE??  Yes.  They’ll be great for people who are learning another language, as well as deaf people whose first language is not English.

As someone who wears graduated trifocals, I was concerned that the glasses might not fit around my frames.  OR maybe the words would be too blurry with my sight issues since my reading field is so narrow.  Not a problem.  Because of the flexibility with font size and distance, I could see the words just fine.  I did have to fiddle with the placement of the glasses on my nose a bit to get it just right, but I could see great.

What I loved most about the glasses was that I could move the words anywhere on the screen.  This meant the words were never in the way of anything I needed to see.    Also, I could move the words under the screen.  Frankly I thought that part was awesome.  I have often wondered why they don’t put the words under the screen with open captioned and subtitled movies.  One of the biggest problems I have had with open captioned movies is when both the words and background are light, they are hard to read.  The words in the glasses were lit up similarly to rear-window type captioning, and they were red.  They never blended in with anything.   So, the words were always  visible and clear and never covered any part of the screen.  Also, because I wasn’t looking through a panel, as you do when using rear-window captioning, I could move my head around freely without losing the captions.  I really liked it.  A LOT!

Best of all, we were able to see a first run movie on a Saturday night!  This theater has been offering open captioned showings on Saturday mornings or at 10pm on week nights, and other inconvenient times for years.   I loved that I could just show up for a first-run movie and it would be captioned, and if that one was sold out, I could choose another, and that one would be captioned too!  Gosh, we almost felt like, (dare I say it?) normal folks.

Now that’s what I call equal access!

The other new type of captioning option under the USL listing is Captiview.  I haven’t tried it, but the picture below is what it looks like.  Seems similar to Rear-window, but maybe improved.   I’ve never been crazy about rear-window captions because of my sight issues and the way you need to sit in one spot after adjusting the arm.  But hey, if it means they will offer captions every time, I could live with this I think.  Word has it that all Regal and Cinemark theaters will be captioning every movie, every time nationwide by the end of 2012.    Whether your local theater installs  rear-window technology, Captiview, the new captioning glasses, or sticks with open captioned movies, this is big news!  See here for more details.  Oh– and pass the popcorn!

I had to have an MRI.  The technician took me to a small room, instructed me to undress and put on a gown.  My personal belongings were to be placed into a locker.  You can bring the key with you, she explained.

“What about my hearing aids and glasses?” I asked.

“Keep them on.”

This surprised me, since the MRI was going to be done on my neck.  If I had been thinking clearly I would have realized.   Ten minutes later  she asked me to remove my glasses and hearing aids, and to place them on a counter.  Loose.  Out in the open.  In a hallway.

This has happened before during out patient surgeries.  “I’m just going to put them over here on the counter,” the nurse will say.  Loose.  Out in the open.  Near water and chemicals.

“You do know they cost thousands of dollars?” I will ask, “and if you lose them or damage them with water or if someone accidentally scoops them up with a paper towel and throws them away, it will cost the hospital $6000.00  to replace them?”

This is almost always met with a gasp.  They didn’t know.

My hearing aids are worth more than any of my things back in the locker.   They are worth more than a pair of diamond earrings.   You wouldn’t want your diamond earrings sitting out in the open, would you? Because someone might steal them.  I am not sure if people steal hearing aids, but you can never be too careful.  I would guess a desperate person might steal anything that could be sold at a pawn shop.

Hearing aids are even more valuable than the $6000.00 replacement cost I mentioned, because they represent weeks of painstaking programming.    They may be  irreplaceable.  It is a known fact that one hearing aid may not sound as good as the next, even when they are the same brands and models.  Hearing aids are like cars.  Sometimes you get a lemon.

So it pains me to see medical staff treating a pair of hearing aids like a small Happy Meal toy.

“You can just put them right here on this counter before you go inside.”

I try to look at it from their point of view.  A pair of hearing aids look like nothing more than shapeless little globs of plastic and rubber-in most cases colorless gray or beige.  Mine are zebra striped, kidney shaped with pinkish blobs of rubberized ear mold material attached.   Most people are shocked by the cost and don’t know about the weeks of programming.   That’s why those of us who wear hearing aids must speak up.  Medical staff won’t learn if we never say anything.

“You want me to put them here on this counter?  Out in the open, in the hall like this?  You do realize they would cost $6000.00 to replace?”

<gasp>

I have a hearing friend, one of the few who has stuck by me while my hearing has dwindled over the past several decades.  We’ve raised kids together.  Somewhere along the line we started going to the opera together to get away from the kids, and for the past umpteen years we have had season tickets.  Now we sometimes take our kids when we go.  Because of the visual stimulation of the stage and the fact that most major opera houses offer subtitles, the opera is a unique experience for hard of hearing and deaf people rarely found in live stage.

“Opera is where a guy gets stabbed in the back, and instead of dying, he sings”.  ~Robert Benchley

Most every opera is performed in a foreign language.  It’s a great equalizer.  For once  everyone else needs the subtitles too!  The fact that I can go to the opera– ANY opera– without requesting special accommodations or equipment means the world to me.  It makes me feel normal.  I don’t have to get there early and drop off my license in exchange for special equipment or remember to pick up my license before leaving. I don’t have to sit in a special spot in order to see the subtitles.  I can arrive and sit anywhere.  If the subtitles malfunction, I am not the only one complaining about it during intermission.

To be honest, I don’t  hear opera music all that well anymore.  I have lost most my high tones.  If there’s a good tenor or baritone, I’m down with it.  A good baritone can make me tremble, but otherwise it’s all about the stage set, costumes, and story.  It’s really all I have, and I’m hanging on to it to the bitter end.  It’s also a social thing, a tradition to be carried on with a friend.   But to be honest, because I have lost most my high tones, if I were to choose a type of music it would have to be rock or country, because both of those genres are heavier on the base where my tones are better.

I only bring that up because it points out the lengths I will go to enjoy a live stage experience.

So last week my friend, I will call her Debbie, sent an email to ask if I would like to see something different for a change.  She and a friend were going to a musical at a small theater in Seattle, and she wanted to know if I would like to come.  I had seen posters around town for it myself, and had been thinking about it.  Heck yeah!  I’d love to, I thought.  They were open to any day, any performance.  They really wanted me to come!

Three of the major theaters in Seattle now offer captioned a few performances with Computer Assisted Realtime Transcription (CART) for every production.  I went to the theater website to see if I could find a performance with deaf access.  Nothing.   I looked at their web page to see what they said about deaf access.

“2011 Season ASL performances
Dates TBA
Please contact the Ticket Office for more details”

Apparently there were no plans for ASL performances in the near future, and there was no mention of Computer Assisted Realtime Transcription at all.

I considered emailing to ask for CART, but I knew it would mean a huge fight, and I just really wasn’t up for it this week. Maybe next time.   It’s been twenty years since the ADA was signed and we‘re still battling for access.  Why?   Maybe part of the problem is that people like me are not willing to fight every time we want something.   Maybe we need to be more feisty.  Maybe I have become lazy, because I have gotten used to the ease of having subtitles at every single opera, every time without having to ask.

Or maybe I’m just tired of being deaf.

(For a list of live theater programs in Seattle with CART for 2011, go here.  Also, do not forget that the Seattle Opera subtitles every performance, every time!)

I have gone over this in my mind a number of times.  All too often people ask if I’m angry at them when I‘m not.   I have a habit of scrunching my eyebrows when I’m concentrating, trying to figure out if I heard something, what I’m hearing, or where the sound is coming from.  In my mind’s eye I see John Williams walking away from officer Birk, his action  misinterpreted as cockiness.  Then he turns, perhaps wondering if he heard some shouting.  He’s holding a small three inch woodcarving knife.  Maybe he’s frowning with scrunched eyebrows.  A video shows a four second time lapse from the first shout to  shots fired.

Unfortunately things like this happen too often.  A quick Google search has turned up more than a dozen incidents involving police brutality against deaf and hard of hearing people around the country in the past decade.   Most of the victims have been tased, pepper sprayed, beaten or pummeled with bean bags instead of being killed.

Take the case of  Tony Love of Mobile, Alabama, who became sick and went to the rest room.  Store employees called police after they became concerned he had been inside too long.  Since he didn’t respond to knocking on the door, police sprayed pepper spray under the door crack.  When Love came out coughing and choking, they tased him.  His crime?  Using a bathroom too long when he was sick.

Dan Tessien of Modesto, CA was pulled over in a case of mistaken identity.  Police ordered him out of the car, first in English, then in Spanish.  But Tessien did not move because he was deaf.   Within sixty seconds police blew out his back window and began pelting him with nylon bean bags containing 40 grams of lead shot.   Tessien claims he repeatedly yelled to the officers he was deaf while they continued to shoot at him.

Donnell Williams of Wichita Kansas was tased in his own home after getting out of his bath tub.  Neighbors  called police when they mistakenly thought they heard gun shots.   With his hearing aids removed, he didn’t hear police knocking on his door.  They broke in and tased him.

In yet another incident an elderly hard of hearing man in Bruceville- Eddy, TX was tased when he failed to follow police orders to stop.  After the police shot his dog, he became upset, then turned to go back into his house when when the “stop” command was given.  Not hearing, he continued on and was tased.

Finally, there is the well publicized case of  Errol Shaw in Detroit, who was fatally shot by police officer David Krupinsky after he wouldn’t put down his garden rake.    Police had been called because Shaw was mentally ill and agitated.   I  wonder if he would be alive today if he had been hearing?   Witnesses claim police were told he was deaf. Why wasn’t an interpreter called in?  Krupinski was later charged with manslaughter and acquitted of any wrong doing, even though the Detroit Police Department admitted a pepper spray was available and should have been used to subdue Shaw instead of a gun.

So what can deaf and hard of hearing people do to protect themselves against violent police attack?  Sadly not a lot.  When I have been to hard of hearing and deaf conventions in the past I have often been tempted to pick up  a deaf visor card in case of emergency traffic stop.  Booth operators have advised that it’s safe to keep one above your visor  in case you get pulled over.  This way you can  let police know in an official, non-threatening way you need to read their lips or use sign language.   Christopher Ferrell of Fort Worth, TX did just that.  During a routine traffic stop when he was pulled over for speeding Ferrell reached above his visor for his deaf card.  Instead of reading the card or trying to communicate with Ferrell appropriately, the officer pulled him from his car and slammed his face against his back windshield giving him a broken nose.

Five and a half months later Seattle citizens are still wondering why John Williams was gunned down on a sunny day while doing nothing more than carving on a piece of wood.   Deaf people are not the only ones who don’t hear sometimes.  With blue tooth devices and iPods, anyone anywhere can be distracted for four seconds.  During a recent forum to improve relations between the Seattle Police Department and the public, President of the Seattle Police Officers Guild, Rich Oneill said,  “incidents wouldn’t happen if citizens complied with the orders of police, even if the officer was wrong.”

If Williams didn’t hear Birk, how could he have complied?  How can any of us comply with police officer demands if we can’t hear?  

(This was previously posted in my personal blog, Face Me. )

Earlier this week I wrote a little bit about some of the difficulties you can have living with hearing people when you’re deaf.   I am not sure if I ever mentioned my husband’s hearing loss.

About twelve years ago he started having spinning vertigo attacks accompanied by loud tinnitus and fluctuating hearing loss.   There was a specific pattern to it where the tinnitus and plugged ear feeling would begin.  Then he got a headache, then full-blown vertigo and vomiting for hours.  Then exhaustion, headache, lethargy –and finally he would feel OK.   Within weeks or months the cycle would start all over again.  This went on for about ten years.  At its worst he would throw up for hours non-stop and was having weekly attacks.

Usually the attacks happened at home  because he had a good twenty-four hour warning period before they hit.  When I tell people he was throwing up for eight hours, they think it was like the flu where you throw up once or twice during an eight hour period with nausea in between.  That’s not how it is.  During the worst of it he was throwing up for eight full hours with his head in the toilet the entire time and he was unable to move.  He would throw up until there was nothing left but dry heaves, and he still couldn’t let go of the toilet.  Eventually he would collapse on the floor out of sheer exhaustion.   Then I would put blankets on him and leave him there on the bathroom floor because he didn’t want to move.

He has Menieres.

Sometimes it would hit more suddenly.   One time he had an attack just as he pulled in to work.  He spent the day in his parking garage at work hanging onto his steering wheel, so paralyzed that he couldn’t even get his cell phone out of his pocket to call for help.  He said it felt like if he let go of the wheel he would fall off the end of the earth.

Another time we were at a family picnic for our son’s college orientation.  I looked out my son’s dorm window to see my husband staggering across the lawn.  People thought he was drunk, but I knew he was on the verge of an attack.  He rarely drinks alcohol of any kind except the occasional beer with spicy food.   The college infirmary wasn’t staffed so he couldn’t go there.  Driving him home wasn’t an option since we lived hours away.   He ended up in an out of the way spot on the lawn puking his guts out.  I assure you this did not make a good impression on my son’s dorm mate or his parents, who wondered why my husband was staggering around and throwing up.   I couldn’t stick around to explain and didn’t care what they thought.

The worst part for me was not being able to help him.

It was pure hell.

After years of trying many, many different treatments it just sort of petered out on its own.   He hasn’t had an attack for two years now, other than some minor bouts with vertigo and motion sickness. We’re still very nervous about doing things that might cause an attack.

The majority of  Menieres patients can be treated with diuretics and a low salt diet, but that never worked for my husband.  There are many other treatments a person can try with varying results.  It’s pretty much a crap shoot.

Some people say Menieres can be caused by stress, but we didn’t find that to be true either.    There was no rhyme or reason to the attacks.

The problem with Menieres is not everyone presents the same symptoms or to the same exact degree.   For example a horizontal spinning attack is different from a vertical up and down attack.   If your doctor doesn’t ask  exactly which direction you spin he might misdiagnose.   An attack can come on gradually or violently.  Attacks can last days or minutes.   Diagnosis depends on ruling out other conditions that can cause vertigo.  There is no specific test for Menieres.  It can take years just to get a diagnosis, and more years to figure out a treatment that works.

The hearing loss was permanent unfortunately.

The hearing loss was minor compared to the vertigo.

I still worry about it, and prepare for the worst whenever we go somewhere together.

We have found menieres.org was a good source of helpful information.   Not all of it the information on this site is reliable, but it gave us some good talking points to discuss with the doctors we saw.

*Five minutes after I pushed the ‘publish’ button on this post, I discovered he was having a minor attack.  Hence the crossed out sentence in paragraph seven.  We’re still living this nightmare, though it’s not as bad as it used to be.  I’m afraid I jinxed him by writing about it.

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.