I have a bilateral sensorineural hearing loss.  We hear those words often but they mean different things to each individual.  I am only aided on my right ear because my left ear is totally unfriendly to any speech discrimination.  Or should I say, speech discrimination is unfriendly to my ear?

I once tried an aid on my left ear, many moons ago, with no affects.  I wear my aid on my “good” ear from the minute I wake up in the morning until I go to bed.  The only time I usually remove it during the day, is when I get jock itch in my ear.  Since last Thursday, I’ve developed extreme pain in my ear and on the crest of the helix.  You know, that part of the ear that has nada to do with hearing.  It’s where u would stick the earmold under that little sucker.

Today is the first day I could not wear my hearing aid due to extreme pain and let me tell you, it was a real eye opener for me and the people around me.  I have never gone this many waking hours out of the house without my aid.  First off, I found the people I work with not able to deal with me.  WOW! Now for the surprise, these are my teammates and we work with the hearing impaired and deaf population and their families.

I guess it’s true when we say, you don’t know what it feels like till you’ve been in my shoes.  Hearing people really do not understand deafness, let alone a hearing loss. Maybe it’s their fear of the unthinkable.  It immobilizes people when we discuss our unability to hear.  The very idea of not being able to hear a discussion, a disagreement or the hearing persons fear to communicate with us because WE cannot hear them.  So afraid to initiate a strategy to communicate with us for fear of catching what we have. 

Then, I encountered the people in the stores, on the streets and the dangers of walking in between cars to cross streets. Naturally, I can’t use my phone, which means, I can’t communicate and others can’t communicate with me, which means I’m going to be one pissed woman by the end of this week.  I’m very social and love to communicate.   The I’m in your face type of person I guess.

Lastly, there’s my family.  Everyones has their mouths wide open to over emphasize what they want to say to me.  It’s so weird and it’s also pretty scary to actually not hear the voices of the people I love.  I guess I’ve taken the assistance I get from my aid for granted.  And friends, co-workers and family around me, have taken my hearing loss and wearing an aid for granted.  I guess now they realize I am not hearing anything and that I am truly hearing impaired though one cannot officially call me deaf.

Don’t you just love when a hearing person says, wow, you have such great speech for a person with hearing loss?  It blows my mind.

Oh by the way, my Doctor really impressed me today. The man actually took out paper and wrote the questions he had for me and had me answer them (verbally of course).  He did not want me to put my hearing aid on because of the pain.  Oh and by the way, this was my Internist not my ENT. 

Here’s one of the reasons I dislike ENT Doctors.  Many years ago, during a phase where I refused to be aided, I went to an ENT Doctor because I was having terrible sinus problems.  As soon as I tell him I have a hearing loss he calls in his audiologist to do a hearing test.   I showed him my audiogram which was taken several months ago by my audiologist. But no, he wants one from his office.  I refused.

This ENT Doctor proceeds to look in my ears after I tell him about my hearing loss, show him my audiogram and explain that I have no speech discrim in my left ear.  The man looks into my ears, looks very seriously at me and says, I don’t see why u can’t hear out of that left ear, it looks perfectly fine.  With that remark said, I stood up, said thank you for your time and left (as fast as I could).  I decided from that moment on, that people, even many well meaning and not so well meaning professionals in the field, do not understand us.  It’s as if they have deafaphobia, the unimaginable! the unthinkable! 

So what is my point?  I raise my glass to all of us for holding our heads up high, for not allowing this to drag us to the grave and for continuing to educate those who hear.

An observation during my recent travels…

Pick up any in-flight magazine, thumb through the pages, and you will find endless “Best” lists.  These lists mostly, but not always, are dedicated to highlighting the best restaurants–Seafood, Italian, American Steakhouses, and more specifically–the best Sushi and USDA Prime Steakhouses–in a given city.  However, you can also find the “Top Ten Factory Tours” and “The Best Doctors in New York”!!  Cool!!

The latter is good to know in case I find myself in New York in need of plastic surgery, hand surgery, a cardiologist, hair transplantation, spine surgery, a sports medicine specialist, a cosmetic dermatologist, or a cosmetic dentist; in that respective order.

I do find it a tad superficial that plastic surgery is at the top of the list of “The Best Doctors in New York”, not to say a plastic surgeon’s work is not vital, but beyond those disfigured by birth defects, as the result of car accidents, and in fires, etc., the rest, in my opinion–your boob and nose jobs, face lifts, tummy tucks, and lip or other enhancements–are performed in an attempt to reverse or halt the effects of gravity and aging, and in the sake of vanity.  All of which any consenting adult is more than welcome to elect. No judgment here.

If being first on “The Best Doctors in New York” list was not enough, I can even find a list of “The Best Plastic Surgeons in America”!!! This information will come in handy if, during my travels, I have the need for plastic surgery while in Los Angeles, Atlanta, Salt Lake City, Miami, Denver, or Charlotte, North Carolina. Hmmmm, the top plastic surgeon from New York (that made the previous list) is not among them??? How good can he be???

Yes, I’m being a smartass!!  Why??  Because, I consider finding the best audiologist and/or cochlear implant surgeon much more important than who can perform my next face lift, boob job, tummy tuck, hair transplant, facial peel, or teeth whitening!! (I heard that collective gasp from all of those readers with blinding, white smiles, perky C-cups, and faces stretched so tight you could bounce a dime off of them.)

Well, just give it a few years and we may see “The Best Audiologists” or “The Top Ten Cochlear Implant Surgeons” as we thumb through our in-flight magazines. Our numbers, those of us who are Deaf/deaf/Hard of Hearing, are ever increasing. A fact that holds no consolation, and I find no pleasure in.

I remember the first time I saw a blue tooth in someone’s ear.  I thought it was a super cool looking hearing aid.  Not long after, Oticon came out with their first ‘non-hearing-aid’ aid, which they called a “hearing device.’

The Delta (now called Dual)  is a colorful modern looking little triangular shaped thing that looks like a . . . well,. . . it looks like a teeny tiny ‘hearing device’ of some sort– just like the name indicates.  The whole idea is that Baby-boomers don’t want to look like their parents or grandparents with drab beige BTE hearing aids on their ears.  So aids were redesigned to appeal to the Woodstock generation.  Unfortunately this was done at the expense of functionality, since the Delta was too small for FM compatibility.

Apparently there was some demand for the FM, and Oticon found a way to include it in their Dual.  If you compare instruction booklets of the Dual and the Delta, they’re virtually the same until you get to the “how to use the phone” part of the manual– not that you have to do anything differently for phone use.  The Dual automatically does it all.  It switches you to a phone program when it detects you have put a phone to your ear.  Baby-boomers like things to be automatic.   Still, its telecoil must not be all that strong because you are warned that the automatic feature may not work with all phones– and then you must attach a tiny magnet to your phone to get your electromagnetic reception.  It wasn’t clear if you have a button to activate the telecoil or “phone program”.

What an attractive device!

For those interested in a cheaper and even better looking hearing aid, there is the Bernafon, which won the International Red Dot Award back in 2007 for its outstanding design.  The Red Dot panel of judges consider more than 61,000 applicants each year.  The Bernafon Brite includes telecoil.  Even better, you can buy it  at Costco for considerably less than the Oticon Delta/Dual.

Cute- eh?

Incidentally, Bernafon is made by Siemens who also came out with a radical new looking hearing aid in 2008.  Here is the Siemens Vibe.

Siemens Vibe

It’s so small, it fits in the inner crest of your ear, but it’s not meant to be invisible, as it comes in all kinds of fun colors and patterns.

Vibe Choices

Next, there is the disposable Songbird.

Songbird

OK– NOT attractive, but it doesn’t need to be.  The ad says it’s virually invisble because it’s only the size of the top of a pen.  And best of all, it’s disposable.  Why a disposable aid is so great, I do not know, but I have to admit it would seem to take care of the problem of when you accidentally jump into the shower with your aids on.  Instead of paying another $4000.00 for new aids, you could simply chuck the wet ones and put on new dry ones.

If you are really in a pinch financially, there is another option.  Here, you have a “hearing aid” that looks like a blue tooth.   This is called the “Stealth”  I don’t know who manufactures it, but you can find it on-line.

I’m not sure if you can hear with it.  You could always pretend you were busy in a phone conversation when you didn’t hear someone.  Sells for $39.99!

I  have mixed feelings about hearing aids that don’t look like hearing aids.   On the one hand, I think it’s great that manufacturers are considering design.  Glasses come in all shapes and designs after all.  They can be a fashion statement, as well as eye correction.  I like that people are getting brightly colored hearing aids and they aren’t ashamed to wear them.  I like that some hearing aids are designed to stand out on your ear rather than to blend in.  I love that modern hearing aids have included blue tooth streamers and that they have gone back to including telecoil.  I love that discreet and ‘disposable’ is an option too.

On the other hand, I wish hearing aids didn’t carry the ‘old age’ stigma with them.   I wish people could just admit these are all hearing aids instead of “hearing devices.”

I sometimes wonder how audiologists can sell hearing aids they have never tried.  I realize not every audiologist can be hard of hearing or deaf, but because most aren’t, I wonder how it’s possible for them to know what we hear when we put on hearing aids or to understand our feelings about feedback and sharp sound.   I wonder if they realize what an important step self-disclosure is in navigating the minefield of accommodations.  I wonder if they realize how proud we feel once we’ve finally embraced our deaf selves?

Lately, I’ve been weighing the pros and cons of the Oticon Epoq RITE (receiver in the ear) against the Phonak Naida.  I already read all the materials I could find on both aids before making the appointment with my audiologist.  The Epoq has a blue tooth streamer and some extra equipment for watching TV, but nothing for conversing with people at parties or the office.  It offers open fit, even for profoundly deaf– but with mixed results I‘ve heard.  Epoq also coordinates sound between instruments in each ear wirelessly, so that they automatically detect direction of sound.  Naida, on the other hand can come with the super-duper Phonak FM  — which is admittedly pricey but everyone I know who owns one of these babies loves it.  Naida has the frequency transposition.  People with profound ski slope hearing loss and dead zones like mine have been raving about Naida because they’re able to hear sounds they haven’t heard in years– like the s sound.  Never before has so much technology been packed into a high end aid.  Never before have I even considered shelling out the kind of money I will be in the next few weeks.

Open fit sure seems like a dream come true.  I hate that plugged up feeling of having a huge ear mold in my ear, especially during the hot summer.  They’re sweaty and oh so itchy.  Supposedly this aid is made for people with up to a 110 db hearing loss.

Even so, I’m having a hard time believing I can get a good fit.  I’m concerned about feedback.  I have one touchy ear canal that always feeds back no matter what.  I already know someone with a similar audiogram to mine who had to trade her open fit Epoq in for a regular ear mold on that side because it didn’t work well for her.   She claims she’s happy with the sound quality now though.  She can hear voices.   But her hearing loss isn‘t progressive like mine.  Looking at the ‘best fit audiogram, I’m right on the lower edge of not benefiting from this aid– the lower edge being 110 dbs.  If I lose more hearing (which I will), the Epoq will not provide enough power.  At $6000.00, that’s a pretty big gamble.

“Why should I get these?” I ask my audiologist.  “How does the sound quality compare to the Naida?”

“Oh– these are GREAT!”  he assures me.  “Everyone loves them.  You’ll hear better and they look great too, because of the open fit!  They‘re practically invisible!”

For the third time, I remind him that I’m less concerned about looks than how well I can hear.   If I can’t hear well with them, it won’t ‘look’ that great no matter how ‘invisible’ the aids are.  I must defend my audiologist here though.  I realize I am probably one of the rare patients who has been wearing hearing aids since I was young.  MOST of his patients probably DO want their hearing aids to be as invisible as possible.   In the past week, two people (over fifty) have confided to me that they know they need hearing aids, but just cant’ get past the old age stigma.  Excuse me?  Try wearing them at 20!

But back to my audi– “We’ve got an intern working with us this summer.” he says.  “He’s from Gallaudet.  You know Gallaudet?”

I nod.

“I’ll bring him in. You can ask what he thinks.  He wears Phonaks.”

I notice the handsome young man wearing big metalic, awesome looking aids with obvious thick plastic tubing.    His aids are obvious, sleek, and evidently very effective because he seems to have no trouble understanding me.  After introductions are made, he looks over my audiogram, then asks,  “Is your hearing loss progressive?”

I nod.

“You might want the Phonaks, then.  They have more power.”

“What’s the biggest drawback to these Epoqs?” I ask.

“Feedback,” he says.

Just as I thought.

I have not met very many deaf audiologists in my life, but this guy knows his stuff.  He has actually worn the aids he’s selling.  He understands feedback.  His own aids are clearly visible and he apparently doesn’t care.  HE GETS IT.  I like that very much.

I have just about had it with people who totally do not understand hearing loss.  Sitting around the picnic table on my deck with family, when suddenly my niece turns to me, taps me on the shoulder and says out loud,  “are your hearing aids on?” 

I looked at her with complete contempt and disgust.  Afterall, she knows I am hearing impaired, knows I wear a hearing aid…….ah! but she’s hearing and she’s clueless.  It doesn’t matter how many times I tell hearing people that wearing a hearing aid does not give us 20/20 hearing, they still don’t get it, can’t comprehend it, and in my opinion, so afraid to imagine what it’s like to be without it.

I’m getting to the point in my life where I am tired of educating the hearing on hearing loss and deafness.  I’m tired of being nice about it and most of all, I’m tired of hearing peoples lack of wanting to understand hearing loss.  I most recently discovered the only way to give hearing people a small taste of what it’s like to have even a mild to moderate hearing loss is to give them a taste of it.

I do workshops for school staff on early detection and understanding  hearing loss.  One day, while preparing my powerpoints, I was trying to figure out how to bring the audience into the life of hearing loss.  And it hit me, I need to allow my audience to get a sense of what hearing loss sounds like to us.  So, I searched the web and found several programs that I could set up to have the audience listen to a man, woman and childs voice and what it sounds like to hear those voices at different degrees of hearing loss.  I also purchased several hundred packaged earplugs online to have each person experience a 35 db. hearing loss (thats if the individual did not have an unknown additional loss) toward the end of the presentation. 

What I discovered by giving everyone the earplugs and moving along with my presentation was that everyone was so baffled by what they could or could not hear and the difficulty they were having with the speech discrimination.   Some people refused to put the earplugs in both ears, some pulled them out after a few minutes but everyone was totally thrown into a new light about hearing loss.  My experiment has been so successful that I now use the earplugs and what hearing loss sounds like for all my presentations to make my point.   I also always carry earplugs on me, just in case I need to do a quick lesson.

Getting back to my niece.  After several minutes of people joking around about my hearing loss, I pulled out packages of earplugs and handed them out.  I told everyone to put them on and continue with their conversations.  At first, no one took me seriously, but the look on my face told them, they best listen. They listened and listened they did.  There were lots of “what did u say?”  ”Did u say blue or hue?” “Look at my lips and try to read them.”

After ten minutes, I got a big apology from my niece as well as my nephew as well as lots of questions. I guess deep down inside I do care and can’t help but feel the need to educate the hearing.  I guess I also learned a lesson here and that is, I need to be patient, as patient as I expect the hearing person to be with me.

Target was sued recently because its website was inaccessible to the blind. A court ruled that a retailer’s website is a virtual “location,” and must be as accessible as an actual store.

In June of 2008, Representatives Edward Markey (D-MA), Chairman of the House Subcommittee on Telecommunications and the Internet, and Heather Wilson (R-NM) introduced http://www.govtrack.us/congress/billtext.xpd?bill=h110-6320 The 21st Century Communications and Video Accessibility Act of 2008″ (H.R. 6320). The bill would require major producers of Internet videos and on phones that deliver video streams to add captions.

The goal, Markey said, is “to ensure that people with disabilities are not left behind as technology changes.”

According to the Pew Internet and American Life Project, about half of U.S. Internet users now watch video online. Many want to watch YouTube videos which are mostly produced by individuals. They may never be required to caption their short videos because they are not commercial enterprises. However, the good news is that YouTube is encouraging everyone to do so. Go here to see how it can be done, and tell anyone you know who is submitting material to YouTube:

http://www.youtube.com/t/captions_about

Few prime-time video streams include captions. For example, NBC captions many of its Internet streams, but CBS does not. These are the corporations the law is addressing.

The main problem is that there is no single common file format or way for all media players to handle captions.
A coalition of over two hundred organizations representing hard of hearing, deaf and blind people are working to advocate for the Markey legislation. Here is a link to that coalition’s website. http://www.coataccess.org. There, be sure to “sign” the petition about captioning internet media.

The internet is the ideal way for those with a hearing loss to communicate. Here we never have to ask for repeats. The SayWhatClub welcomes newcomers and loves to answer their questions about hearingloss, as their own questions were answered when they first joined. But we also enjoy just “chatting” with each other about news events, personal events, and anything that comes to mind because it’s so difficult for us to do that in “real life” anymore. Everyone understands why we’re here, and what we go through daily as people with a hearing loss.

The internet has opened a whole new experience for many of the isolated hard of hearing in the world. The SWC has members from Australia, New Zealand, England, South Africa, Canada, India, several other countries, and of course, the U.S.

By using the internet to both reach out to and help people with a hearing loss, the SayWhatClub hopes to grow and continue to help folks in an immediate way, and in a way that is ideal for people who have trouble communicating via being able to hear. We hope anyone with the slightest interest will try us out. You have a lot to gain, and nothing to lose.

www.saywhatclub.com

I’m totally baffled and perturbed by the hearing aid industry and audiologists.  I’ve just about had it.  I recently interviewed two hearing aid companies:  Oticon and Sonova Holding HG.  You can read the interviews yourself at http://www.saywhatclub.com/newsletter/june09/interviewgw.html and the Sonova interview at: http://www.saywhatclub.com/newsletter/june09/interviewgf.html

In case you were not aware, Phonak and Unitron are under Sonova AG Holding.  In anycase, I find it interesting that each company believes their product is number 1. What I find interesting are the questions that went unanswered and left me with a bad taste in my mouth. 

Why can’t hearing aid companies tell us how much it costs them to make a hearing aid?  Afterall, we have a pretty good idea how much it costs to make a car, how much it costs to make a movie, a video, clothing, etc. Yet no one wants to be honest about the manufacturers cost.

The manufacturer claims the audiologist makes a big profit and the audiologist claims the company does.  I now know the restocking fee is the audiologists, not the manufacturers fee, and in all honesty, the audiologist deserves that fee.  Afterall, they are spending time with us for the fitting and the programming.

However, I don’t know how any company or audiologist can think that a $3000 hearing aid is worthy of its cost.  We get a 45 day trial period, yet I am told that it can take up to 6 or 7 months to adjust to the sound.  Duh! I am $3000 down if I hate the sound after 6 months.  I wonder how many audiologists have stuck earplugs in their ears for 24 hours?  How many manufacturers make their Executive Boards wear the earplugs just to get the sense of a 35 db loss?

I recently went to see a new audiologist and though I liked her alot, she was totally unsavvy concerning assistive technology.  This is really not a good thing.  Why aren’t the audiologists being trained to understand the clients who need this technology to function?  Simple things like bluetooth technology and loop systems.   I don’t know about you, but I am so frustrated, I want to just get the software to program my own hearing aid and purchase an aid online.