Sunday, January 31, 2016

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/



Sunday, January 17, 2016

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.