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!

The SayWhatClub is a strong support group for late deafened and adults with hearing loss.  We believe strongly in helping one another through our support groups and through Education.  The University of Washington needs everyones help, especially parents who have children with hearing loss or deafness.   You can learn more about the study here https://depts.washington.edu/projhql/  The University also has a facebook page about the study.  http://www.facebook.com/pages/Quality-of-Life-of-Children-and-Youth-who-are-Deaf-or-Hard-of-Hearing/121377458983

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 don’t want to hate hearing people who don’t understand or people with hearing loss who are too vain.  I want to yell at the top of my voice,  do u have any idea what its like to hear you all muffled? or people who think its funny to open their mouths wide and exaggerate their words.  I have a guy at work who thinks its so funny to refer to me as being deaf.  I’ve pulled him aside on several occassions to have a talking to.  He still doesn’t get it.

I started doing staff developments at work and have received a very positive responses.  I made them all wear ear plugs that gave them only a 35 decibel loss while I spoke.  Several pulled them out after a few minutes and you could just see the disbelief on their faces screaming, “thats a 35 db loss?”   It certainly scared them enough to ask alot of questions.  I did a whole power point on how many children and adults have hearing loss in the U.S. alone.  How many parents admitted to not aiding their children and how many children were failing school due to a lack of access to communication and hearing properly.

Sometimes I just want to yell from the top of the Empire State building,  PEOPLE WAKE UP…..WHY ARE U ALIENATING US, WHY ARE YOU AFRAID OF US? Are you afraid you might become one of us?  Well, the truth is, you just might one day, but it wont be because you caught it from us.  However, what goes around, comes around.  Treat me badly and that will come back to haunt you.

There are approximately 1 out of every 6 people walking the streets in the U.S. with a hearing loss. I suspect those numbers are going to change very quickly over the next decade to something like one out of three.  We are a techno smart society but most just can’t understand hearing loss. Lets hope the baby boomers will drop the vanity, refuse to pay $3000 for the best hearing aid on the market and advocate for understanding rights to hearing that doesn’t cost us our life savings.  Lets hope people can stop thinking old age when they start losing their hearing, and stop stigmatizing their own children who have hearing loss and refuse to aid them….that is definitely and should be illegal.

Most of us are aware that a Deaf culture exists. Simply visit a state school for the deaf, and observe students and teachers communicating mostly through American Sign Language (ASL). Or sit in on a coffee house “chat” with a local Deaf social group, and notice how quiet the room is while attendees use sign. The Deaf culture is something its participants are proud of, a culture with a shared ASL language and communication style that goes back many years.

Now observe a local meeting of a hearing loss support group. The keynote speaker communicates with both sign language and orally. A man sitting in the back relies on an ASL translator to understand the speaker. A row of people read real-time captions from an overhead screen as a person types what the speaker is saying. Two women sitting up front watch the speaker’s lips attentively to catch each word spoken. All of these people, except the sign interpreter and typist, are hard of hearing. Yet they all have different ways of communicating and understanding one another.

Without a shared communication style, can individuals with hearing loss really have their own sense of community or culture? Readers of this blog recently shared their opinions…

“I have total hearing loss in both ears. But because I was adult deafened and am oral and do not use sign language, I am not considered culturally Deaf, rather hard of hearing. Yet I am “deafer” than 95 percent of the students at the local state school for the deaf who have some residual hearing. I am in between cultures. I cannot participate in the hearing community, nor the Deaf community.” – Sherry Mason, Missouri

“My husband has hearing loss, and it is very difficult to hear in restaurants and other public places. I think people who don’t deal with hearing challenges are unaware of the obstacles they create. Is that cultural?” – Amy Hemingway Smith, Texas

“How about coming up with a definition of ‘culture?’ And with some parameters for what you mean by ‘hard of hearing’ people? Do you mean only people with partial hearing loss who use speech (and maybe speechreading) to communicate? I’ve been assuming you are distinguishing between Deaf people (who use sign language) and hard of hearing people who don’t, but not everyone will realize that. Also, I still think that only people who socialize with several oral hard of hearing people at the same time can really answer the question. People who have never done so aren’t in a position to know themselves whether or not there is a HOH culture–they won’t have seen it in action.” -Dana Mulvany, Washington, D.C. (has hearing loss)

The last comment raises a good question. How can a hard of hearing (HOH) culture be defined?

• A shared communication style. They prefer to speak orally, instead of only using sign language. Lip reading (also known as speechreading) is also a common way to understand one another.
• A strong reliance on technology. Hearing aids and assistive listening devices are available to help the HOH population understand speech and hear important sounds.
• A strong reliance on closed captioning. Captions assist with understanding television, movies, and (when available) live presentations. This could also fall under the technology category.
• Emotional connection. This would include not always feeling connected with the hearing world because of difficulty understanding speech. For those not comfortable with sign language, they may not feel part of the Deaf culture. Emotionally, individuals with hearing loss might feel somewhat isolated from the hearing and/or Deaf “worlds.”

Author Bio:

Shanna Groves is the author of Lip Reader (June 2009 release), a novel about an Oklahoma family’s hearing loss experiences during the early-1980s. Read the Lip Reader Blog at http://shannagroves.blogspot.com.

14/365 – the librarian in me, originally uploaded by ~shepdc~.

Last week it happened again. At the beginning of the day, I went out to my car for something and accidentally locked myself out of the building. I do this about once a year. In fact, most of us do. There were two people inside– one, like me, who couldn’t hear, and one who could. Just as I rang the buzzer, SHE pulled in, then teetered her way across the parking lot, keys in hand.

“Why did you bother buzzing?” she screeches, “Margie is just as DEAF as YOU. She can’t hear anything!” She punctuates this last with a final scoff just to make sure I understand how inconvenient it is to work with deaf people. I explain Margie isn’t alone, and that I had hoped Sue would hear it, but that she had not. I am tempted to explain that I actually CAN hear the door buzzer because my of my good low tones, but I don’t feel like going into the details of my audiogram–yet again– that early in the morning. Experience tells me she doesn’t listen anyway.

I wonder how many of you work with someone like this? Most every office has at least one difficult person. We tip toe on egg shells around them. They take offense if you offer help, because they’re “CAPABLE OF DOING IT!” But they also get annoyed when no one offers to help — “FINE! I’LL DO IT MYSELF!”

Later that afternoon someone wants to speak to her while she is taking her lunch break. I cringe.  She’s still in the building, eating in the lunch room. The message comes via a third party who mumbles. In the past, she has thrown fits when people haven’t fetched her from her lunch break to discuss “IMPORTANT BUSINESS!” But she also throws a fit when her lunch is interrupted. None of us ever knows when it’s important enough to interrupt her break, so we always do. Can’t win.

I tentatively stick my head in the door and say, “Carl needs you.” She slams down her book and glares. A few moments later she sniffs past my desk on her way to meet Carl. Five minutes later she’s stomping back, then sneers over her reading glasses, “It was LAURA, not Carl.” She says LAAUURRAA in drawn out syllables to emphasize my stupidity in mixing up the two names. I shrug. Thank God she isn’t my boss. I’d quit.

This is indeed a difficult person.  I’m not the only one who feels this way, but I am targetted more often than others because of my hearing loss.  It gives her some extra fodder to work with.

A desk mate across the way begins to chuckle. “SHE’S having a day, isn’t she?”

“I thought it was Carl,” I say. “I don’t do it on purpose, ya know?”

“You don’t do what on purpose?” she asks.

“I don’t mishear things on purpose.”

“You didn’t,” she says. “It WAS Carl that wanted her. . . and then Laura.”

It’s bad enough to mishear things, but to get blamed for mishearing when I heard right somehow seems worse.  And yet, given the choice I’d never exchange my hearing loss for her anger problem.

Though we expect our parents to die, the reality of it all just blows u away after sitting shiva (the seven days of mourning in Judaism after the death of a parent).  I know this is going to sound crazy but after several days, I stopped trying to hear what people were saying.  I was actually glad to have a hearing problem.  Without a doubt, some people mean well but there are those who mean well too but just don’t stop talking. They love to hear themselves speak or they are just uncomfortable with the whole process that they can’t stop speaking.

The one thing that amazed me was meeting so many people who had deaf or hearing impaired children or parents.  Suddenly, I became Miss Popularity with one of my brothers in his showing off his little sister who had a hearing loss and works in the field of deafness.  Death has a funny way of bringing people together as does being part of any culture.  It’s truly a small world out there. Live it, love it and learn from it.