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.

Here We Come A-wassailing...

Tonight, the elementary school where I teach had a Christmas caroling event that I was planning to attend. It would have been the first time for me to carol since I lost my hearing suddenly three years ago. 

I didn’t go. Seriously, I could come up with a million reasons why I didn’t go, but the only excuse I have is that I chickened out.

I’m afraid of music. It’s true. It terrifies me. If this had been a dinner or a play or a discussion of the complexities of the Pythagorean theorem, it would have been much easier. But it was music and singing. And that is much, much scarier.

Oh no! It's MUSIC!

I’m considered a high-functioning cochlear implant recipient. I hear and comprehend speech and conversation very well in most settings. But music eludes me. It’s my bête noire – the beast I have yet to conquer. I have focused on music rehabilitation for the last year, attempting to make my cochlear implant work for hearing music. I haven’t been able to find a way past the distorted static of noise to find a melody or harmony or instrumentals -- or much of anything musical at all. I complain to my audiologist and she patiently adjusts my programming in ways I cannot comprehend – little tweaks that might help. But she tells me that many of her patients complain that music is elusive to them as well.

We’re limited by the technology. And by our hearing loss.

When a person loses their hearing, many other things are lost along the way. It’s difficult to describe the impact that hearing loss has on our lives to those who’ve never experienced it. One of the things I was warned to watch for is the withdrawal from things I once enjoyed. That didn’t happen for me as suddenly as I lost my hearing, but I slowly became aware that I turned down invitations to events I once participated in gladly, preferring instead the quiet and solitude of activities I could do without the necessity of a working ear.

There was a day when I would have loved caroling with friends and colleagues. But not today.

So I sit here on my living room sofa trying to rationalize my guilt away. I know I succumbed to my fear of music and pitchy melodies and harmonies too far out of my decibel range to hear. And I stayed home. My self-speak chastises me with “should haves” and “could haves.” I should have shrugged off my fears and insecurities and gone caroling anyway. I could have tried. I should have endured. I could have taken my cochlear implant off, shutting off the “noise” of the songs, and smiled my way through the silence. But I didn’t. I'm a coward.

Music is a very, very, scary thing.

Silent Mornings

I often find myself awake before my family on weekend mornings. It's a time for me to enjoy the peace and quiet before the hustle and bustle of the day begins.

Leaving my hearing aid and cochlear implant processor behind in my trusty Dry and Store, I relish these silent mornings -- these times of muted quietness. It's a good time to reflect and ponder the world's problems and mine, as well. Uninterrupted by the noise pollution that plagues our cities and neighborhoods and homes. I can find my balance in my quiet ruminations. Sometimes, I catch up on world and local news online, or with friends and family on Facebook.  I brush the dog and love on her a little bit. I drink my coffee leisurely and indulge in a bagel with cream cheese. I work a crossword. I ponder my week's lesson plans and browse education blogs for ideas. When weather permits, I sit on the patio and soak in the sunshine and the cool breeze against my face. And I write.

I've made peace with the silence.

It wasn't always so.

When I lost my hearing three years ago, I was abruptly thrust into perpetual silence. It was scary, to say the least. In a world that is inundated with noise, silence is a formidable presence. It was the elephant on my back. I could no longer fill that silence with music or television or conversation, as others do. It was a lingering and unrelenting presence that followed me wherever I went. I had to make peace with it, or I would go mad.

Hearing aids helped. But it's not the same. They are a necessary tool for communication with a world that requires --- sound.

But for now, I will be happy in this morning's silence. Soon my home will be filled with a mosaic of sound: voices and dishes clanking and water running and televised football games and music and laughter.

And I will retreat to my bedroom where I will don my hearing devices for this new day so I can join my family in this thing we call life.

Miracles, Part II

I have written before of the physical miracle of hearing -- how this intricate and minute mass of bones and tunnels and nerves and muscles and membranes and fluids and organs and sound waves work seamlessly together to produce this sense that we call hearing.

It's a freaking, awe-inspiring miracle from God. 

But it is perhaps the most fragile sense that we have. It's fragility is a reminder that it is a gift to us. Something we can lose through neglect or abuse or random and coincidental events in our environment. When a breakdown of any part of this delicate system occurs, our hearing is affected -- even when we don't perceive it ourselves; and when the fine parts of our hearing organs are damaged, they cannot regenerate themselves.


I was reminded of how fragile our hearing is today. The fluid that bathes the working parts of my ears backed up -- clogged from its natural release by an inflammation I cannot see. It was a process that probably began several days ago with an exposure to some virus or germ or allergen -- and it reared its ugly influence days later in the form of an earache -- and that dreadful feeling of more hearing loss.

A trip to the weekend Urgent Care reckoned me with a diagnosis of a conductive hearing loss and a migraine trigger that could be remedied with a steroid and pain relief injection. Lucky for me that this once, I would soon be back to my "normal" in a few days. A written prescription insured that the inevitable rebound headache could be self-treated at home with more pain relief medication.

The effects of an opioid narcotic is a mystifying sensation. Teetering on the brink of unconsciousness is both an unsettling and strangely satisfying experience. The line between asleep and awake are blurred.

You roll over in bed and catch a glimpse of the clock. It is 2:10. As you drift into your semi-conscious state, you are aware that you cannot trust your senses anymore, and you don't care. It is calming and pain-free and beautiful. Your night-dream and reality flow together. You know the difference, and the effect of the drug lulls you into its world effortlessly.

You are acutely aware of your breathing. It slows. And the rise and fall of your breathes are refreshing and rhythmic. You are gently transported into a surreal world somewhere between consciousness and sleep. You lay in a field of grass and see the bright blue of the sky. You feel the softness of the wind against your face and you savor the coolness of the air in your lungs. in. out. in...out. Your aren't asleep or awake anymore.

You feel the waning beat of your heart. And you know that you are slipping into unconsciousness, but you are completely knowing that it is happening. You realize your heart isn't beating anymore, and you call to your husband, "Can you feel my heart?" But you see that he no longer sleeps by your side. He has drifted across the ocean on a raft -- and just as the tide wafts him over the edge of the horizon, you catch a glimpse of the air in his sails. in. out. in. out. And you know that you are breathing.

Then you feel the gentle pop in your ear. You know the steroids are working their purpose. And through your semi-sleep, you repeat its name in your mind: dexamethasone. You know its name. And a little prick in your gluteus maximus jolts you enough that you turn over in your bed. You got a shot earlier. Dexamethasone. You are awake. You catch a glimpse of the clock. It is 2:15. But the effect of the narcotic still lurks in your body. You close your eyes and you begin your awake-dream again. It's something you've done several times tonight.

It is when you wake in the morning, that you know the medications have calmed your body's defense mechanisms and allowed the miracle of healing to occur. Your headache is nearly gone and your ears are easily releasing the pressure that has held them captive for the last few days. You can hear better. And you become aware that all that is lost is not gone forever. There are still miracles for you.

Miracles. And this is the only thing I need -- and want -- to be thankful for right now.