Discreet

Discreet: (adjective) not likely to be seen or noticed by others; careful not to cause embarrassment or attract attention to.

This morning I read several blogs on hearing loss sites. The articles were a fair and basic overview of hearing loss and its impact on individuals who've experienced hearing loss, both the physical and emotional problems that may ensue when one loses their hearing.

The problem I had with all of the articles was the reference to the newer hearing aids that provide users with a "discreet" solution for their hearing loss -- as if they should be something that is kept hidden and, God forbid, discussed openly with others.

My problem is with the continual use of the word discreet. 

In a society where hearing loss is reaching epidemic proportions, why should we be concerned with being discreet about our hearing losses and the devices that make it possible for us to hear again -- as if our hearing loss and our hearing aids should be regarded as an embarrassment, a personal failure, a family secret?

According to the National Institute on Deafness, a whopping 15% of Americans aged 18 or older have a hearing loss and approximately 9% of adults between the ages of 55 and 64 have a disabling hearing loss. That's about 1 in every 10 adults -- and the numbers continue to grow each year! It's time we bring it out into the open.

I am not sure why hearing loss and hearing aid use has been relegated to the quiet whispers of the back room with other health afflictions like bladder control, erectile dysfunction, or sexually-transmitted diseases. No one seems dissuaded to hide their failing eyesight by wearing discreet eyeglasses. Nor are they inundated with a barrage of insensitive or uneducated remarks about their eyesight. "Oh, I see you have eyeglasses! They're so big. Couldn't you have gotten more discreet ones? Can you still work? Can you still drive? Can you see me now?"

Indeed, it is ridiculous to think that our eyeglasses should be unnoticeable or inconspicuous -- as is our preoccupation with keeping hearing loss discreet.

Hearing loss is no joke. Nor is it an embarrassment. I hope that those who read this blog will know and understand and spread awareness about something that should not be discreet.

My name is Bonnie. I have profound hearing loss. And I wear hearing aids. Proudly.

Vacation Packing

There was a time in my life when packing for a trip was easy. Toss a couple pair of jeans, tees, and skivvies into the carry-on and off I'd go.

Those were the days.

Now traveling brings about a whole new experience as I have to plan my packing well in advance of my trip. It also brings about a whole new list of things to forget. There are so many indispensable things one needs when traveling with hearing aids and cochlear implants. You can't leave home without them.

Batteries, of course are the most important. Face it, without those little things, I would be rendered pretty-near deaf and unable to function and enjoy my trip as intended. So I always carry a pack of disposable batteries with me. One each for my hearing aid and cochlear implant processor and spares for those "just-in-case" scenarios. I could easily pick up a pack of batteries for my hearing aid at the local Walgreen's if I needed to, but the cochlear implant takes a special battery that's not as easily found. I have panic attacks if my battery supply drops below a two-pack backup, so I always carry lots of batteries with me. It's an obsession, I know.

The spare parts kit --because even though I have never had anything break, Murphy's Law predicts that if anything were to break down, it would most certainly be when I am nowhere near my audiologist's office. Extra coil, coil cable, ear hook, battery holder, battery holder cover, magnet, even more spare batteries, cleaning tool, cleaning cloth, spare wax guards, backup processor -- all packed neatly in my hard-sided Cochlear brand carrying case.

And the accessories kit -- the portable Dry-n-Store for drying my processor each night, my Sonic Boom travel alarm clock with bed shaker, my battery charger, mini mic, phone clip, remote control, accessory cords, charging cords, and power cords. I finally broke down and purchased a make-up bag to carry these items.

And I must remember to tuck my cochlear implant identification card inside my travel papers with my driver's license or passport for the rare times my implant may set off the airport security alarms. I've had my head patted down several times since I got my CI.

Once these things are checked, rechecked, and triple checked, I can pack the rest of my things in the small space left in my carry-on bag... things that will never fit now.

...I need another bag.

Awareness

Today is International Cochlear Implant Awareness Day. It's an obscure little recognition of a very big thing for people who have a cochlear implant. Most people are only aware of it because they happen to know someone who has one, or they are deaf/hard of hearing.

It's nice to try to spread the word about them. They can change lives, for sure.

So here are some facts for your awareness --

It's really pronounced "COCK-lee-er", not "COKE-lee-er" like most people have heard it pronounced. That was a surprise to me. Americans seem to be the only ones who mispronounce it. In the rest of the world, they say it right.

I found out that I was saying 'tinnitus' wrong, too. It's "TIN-it-us", not "tin-NIGHT-us" as I had thought. Though both pronunciations are acceptable by laymen, the first is considered "most correct" by medical professionals.

The idea of cochlear implants was first proposed by a man named Adam M. Kissiah in 1974. He was granted a patent on the first cochlear implant three years later in 1977. It basically delivered sound to a deaf person. A man named Graeme Clark is credited with the development of the modern multi-channel electrode and speech processor -- which turns those sounds into speech.

The first cochlear implants had body-worn processors. The familiar behind-the-ear processor came later as technology miniaturized. My processor is considered the smallest and lightest one on the market today. I'm interested in seeing where this technology will lead us in the future. I expect that, like hearing aids, the cochlear implant speech processor will continue to get smaller and less visible as the technology advances.

As of 2012, approximately 324,000 people have been implanted with a cochlear implant worldwide. I'd suspect that number is much higher now that the FDA criteria has been expanded to include those who are one-sided deaf, like me. The numbers can be expected to increase even more as the impact of hearing loss rises in our modern society. Hearing loss is reaching epidemic proportions.

Until I lost my hearing, I was completely unaware of cochlear implants. When I was diagnosed, my ENT said I would need a cochlear implant. I had to go home and Google it. I cried when I looked at the images of people wearing their processors. I didn't want to wear that monstrosity on the side of my head.

I changed my mind. Being able to hear was more important than my vanity.

Happy International Cochlear Implant Awareness Day.

Wireless Technolgy...Just WOW

I've been playing with my new wireless technology. My new Linx2 hearing aid and my Nucleus 6 cochlear implant processor have the ability to pair with my new wireless devices -- the TV streamer and the Mini Mic. 


Wow. Just wow.

I can stream sound from my TV directly to both ears. It is pretty amazing. To be able to hear again in what can only be described as "almost normal" is so wonderful that I sat up way too late the first night I used them -- basking in the awe and glory of sound. It brought tears to my eyes.

Then I used the mini mic at school. Wow. Again. It brought voices amazingly clear and close. It was a bit disturbing at first to hear my own voice so clearly too, but I got over it quickly as I relished being able to understand my students with ease I'd forgotten was possible.

Over the weekend, my hearing daughter helped me test the mini mic out in a restaurant, too. She walked across the floor, asking, "Can you hear me now?" until she reached the transmitter's limit. No one seemed to notice, or at least we didn't care if they did. We were having too much fun. The only thing we lacked was my ability to answer her beyond a shake of my head. It's not a walkie-talkie.

Hearing loss sucks. It really does. But technology helps to fill the gap. And that is pretty grand. 

It's a Beautiful Thing

It's a beautiful thing.

I got a new hearing aid on Wednesday.
It's a ReSound Linx2 7 RIE Model 62.
It has more power than the remains of my Phonak Audeo BiCROS aid I'd been wearing for the past three and a half years. It also has more bells and whistles.
I opted for the "mid-range" model rather than the premium model. It has everything I need, and lots of things I'll probably never need. And it was about $500 less than the 9 series. I'm a "put-it-on-and-leave-it" kind of hearing aid user, so I figured the 9 wouldn't be worth the extra cost for me.

I didn't expect to hear THAT much better than I did with my old hearing aid. But the newer features are definitely a welcome addition. I can choose from 4 specific programs that adjust to my environment: Everyday, Restaurant, Performance, and Outdoors. Each one changes the directionality of my microphones and optimizes listening settings.

I had reached the point that hearing on the telephone was getting pretty hard. I cut phone calls short and preferred texting to voice calls. With the Linx2, I can stream phone calls directly to my hearing aid from my iPhone. I can ditch the phone clip now, and I can multitask while taking calls again. And I can listen to videos unaware during faculty meetings!

I can adjust volume and settings from my iPhone -- eliminating the need for another remote control. It also makes it unnecessary for me to memorize how many "soft taps" are needed on which button to change programs or volume. Or was that volume and programs?

I can stream TV directly to my hearing aid. I've had the capacity to stream TV to my cochlear implant for several months. To be able to listen to TV bilaterally is pretty fabulous, I must say. But don't try to talk to me while it's on because I won't be able to hear you!

I ordered a mini-mic with my hearing aid. It is supposed to bring voices nearer and clearer than ever. It, too, will pair with both my new hearing aid and my CI. Unfortunately, the mini-mic wasn't holding a charge and my audi wasn't able to get it to pair to my hearing aid. We had to order a new one. She's not charging me for the mini-mic. I love my audi.

I'm still getting used to the custom mold. I'd only worn dome tips before. The dome tips irritated my ears to no end, and I'd tried a number of versions in an attempt to find one that worked for me. The mold is more difficult to insert and it makes me feel like my ear is plugged (which it is because the mold fills it up!), but it fits like a glove and is very comfortable. It's made of clear material, so when it is inserted, it's virtually invisible -- fitting deep inside my ear canal. My audi assures me that I will get used to it, and it will keep more of the sound in so I don't whistle at people so much.

My first experiences with my Linx2 in the real world have been mostly successful, though I've adjusted the volume down quite a bit. Knowing I'm one who likes a lot of volume, my audi skipped the "new patient" settings and gave me a full setting from the beginning. I know from experience that I will adjust to the volume, so I won't ask her to change the volume when I see her for an adjustment in 2 weeks.

Hearing aids and cochlear implants can be an encumbrance -- remote controls and gadgets and batteries and spare parts and power cords and settings and wireless devices and mappings -- and the technology that comes with them can be overwhelming and distracting. People who use them understand how wonderful these new hearing aid features are. I'm still learning to navigate the technology so I can appreciate them more.

They're a necessary, important, and even wonderful encumbrance for those of us who need them. I can hear. For that, I am eternally grateful.

It's a beautiful thing.

Guest Blogging...

I recently wrote two articles for Gael Hannan's "The Better Hearing Consumer" and "Hearing Views" for Hearing Health & Technology Matters, a web-based site for anyone seeking information on hearing health.

One of my articles tells about my experience of teaching with a hearing loss. It was met with accolades and lots of positive comments. People love to hear CI success stories.

The other wasn't received as readily.

I wrote about the CI community's position of advising recipients to "Keep your expectations low and your hopes high". I disagree with that philosophy. My experience as an educator bristles when I hear a person telling another to have low expectations, and in my piece I addressed a well-documented and researched phenomenon called the Pygmalion Effect, whereby high expectations yield high results.

Immediately upon posting my article on her Facebook page, several members of the CI community responded in less favorable reviews. It was exactly what I'd expected from them. Comments of how my experience wasn't representative of the greater community and how there are a lot of variables that affect success and that having high expectations isn't realistic, yada yada yada. They missed the message. My article wasn't about achieving success or not. It was about raising expectations.

What they failed to understand is that achievement, realistic or grandiose, is greatly influenced by expectations. I am fully aware that each person brings their own unique set of circumstances and conditions to their CI experience. Being realistic doesn't mean lowering your expectations. It means understanding them. What I question is the continued discouragement of new CI recipients. It is proven that if one has high expectations for success, then you will most certainly achieve higher results than if you had expected less. So why not encourage high expectations along with those high hopes?

In a Facebook group, I once asked why everyone kept saying that. The community responded in like-mindedness that low expectations kept you from feeling "disappointed." It seems the CI community is ingrained in their low expectations -- as if it is some rite of passage or badge of honor when the CI doesn't deliver the results they had wanted.

The process of implantation and rehabilitation were fully explained by my medical team prior to surgery. I was told by my otologist and my audiologist that I was a prime candidate for success -- above so many others -- because I had only been deaf for a relatively short time. The neural pathways to hearing with a CI were healthy and easily "awakened". I had the potential to be "fully hearing" with the CI.  Many recipients, however, have been deaf for a very long time or face hearing disorders that I do not have. Their pathways are weak and may never fully awaken. They may never achieve what I have.

They shouldn't compare themselves to me.

But the expectation should remain the same -- that they will be able to hear when they could not hear before. Expecting the very best results for their unique conditions is paramount. Otherwise, why even venture down this road?

The cochlear implant isn't a miracle fix for hearing loss. And it isn't for everyone with hearing loss. But for those whose medical conditions warrant it, the CI can lead to better hearing. You have to expect success.


Read my article at the link below.

http://hearinghealthmatters.org/hearingviews/2016/pygmalion-golem-little-engines/

It's a Time Bomb

Living with idiopathic Sudden Sensorineural Hearing Loss is a bit like living with a time bomb wrapped around your cochlea. You never know when another attack will render you with more hearing loss, or leave you deaf. I am consciously aware of every little difference in my hearing. I go along for weeks and months with no problems. Then quick as a wink, the bomb goes off and I fire off panicked calls and visits to my doctor. Most of them end with a reassurance that everything is fine. Sometimes, it ends with steroids and treatment to stop the attack and salvage hearing. SSHL decimated the cochlea in my left ear and damaged my right -- interrupting the sound signals my brain received.

The fallacy that most people believe is that they hear with their ears. In truth, they hear exactly as I do -- the sound is received by their ears and interpreted by their brains. It is the method of delivery that differs. With a cochlear implant, the damaged cells of the cochlea are bypassed by a technological device, and the sound is delivered to the auditory nerve via a complex array of electrical signals which are interpreted by my brain as sound. My cochlear implant doesn't restore my hearing; it restores my perception of sound by replacing the lost signal with digital impulses from an electrode. Alone, my cochlear implant delivers mediocre hearing, at best. I still rely heavily on my hearing-aided ear to hear most things "normally". The fear I have of losing the hearing in that ear is immense. I know it's a time bomb.

When I noticed that the hearing in my better ear was suddenly diminished last Friday, I immediately jumped to the worst conclusion. I was reading with a small group of children when it happened. My voice was suddenly all inside my head and my ear felt "stopped". I noticed that all the children's voices were coming from my implanted ear -- as if my battery had suddenly gone out in my hearing aid. A quick brush on the hearing aid microphone with my finger revealed that it was working, but I knew my hearing was significantly diminished. Luckily, my cochlear implant can suffice when my hearing aid fails, even if it isn't as good as both.

My ENT and otologist were both out-of-the-office on that day. I was able to see my primary care physician that afternoon to check for obstruction or infection. A quick examination revealed no physical causes for the sudden hearing loss. I'd already had that familiar sinking feeling... "Your ears look perfect," he said. I'd heard that before. Knowing the only known treatment is steroids, he gave me a shot, a scrip, and advice to see my otologist on Monday. I was able to schedule an appointment for an audiogram on Monday.

The weekend was long and fretful. Those awful "what-ifs" nagged me. What if I've lost more hearing? What if I can't work anymore? What if I have to have another cochlear implant? What if...what if...what if...

I obsessively pulled the hearing aid ear piece from my ear all weekend to self-check my hearing. In. Out. No difference. CI off. Ear piece in. Out. No difference. Fret. Fret. Fret.

Monday finally arrived, and the audiogram showed no change in my hearing. My hearing aid was thoroughly checked and microphones changed. The ear piece was changed and the wax guard was replaced. My ear was examined under microscope by my doctor. No perceivable difference in hearing with or without the hearing aid, but my ear was "normal". It's a mystery.

I was told to finish the course of steroids because it wouldn't hurt, and given an appointment with my audiologist to check and balance my hearing devices. I would have to wait two more weeks. Perhaps the new map on my CI was overpowering my hearing aid and was altering my perception of sound. Maybe my hearing aid was beginning to fail. "It has an average life span of 5 years. Yours has been running at full power for 3 1/2 years," the hearing aid tech told me.

And then...maybe the steroids had stopped another SSHL attack.


Damn that time bomb.