Friday, March 20, 2015

Another Paradox

The sorting of human beings by similarities and differences is nothing new; it's been done throughout the history of man. But the "groups" feature of online chats and social clubs in our world today puts a new slant on classifying us by who we are or who we think we are. It fabricates and nurtures a familial brotherhood among those who have similar traits, thoughts, beliefs, and experiences; and it can lull us into a false security of pseudo-friendships and well-being by connecting us with people we've never seen -- real people and characters created solely for online interactions. These groups easily sort us into groups of like-mindedness and make us think -- even believe -- that we are not alone. That we aren't quite as unique or different as we may have thought before. It "normalizes" us into a comfortable status quo.

This can be good -- when one finds help and support for problems and difficulties, and confirms in our minds that because others have experienced similar problems and found their way through, we can too. It can be bad when the group enables less-desirable behaviors and thought patterns. Both are virtual worlds where truths and lies are hard to distinguish.

I have participated in both. And I have rued the positive and negative consequences of both.

Truth be told -- until I joined some Facebook groups, I didn't even know a single soul who had hearing loss, or even wore hearing aids. And since that time, I've only met two people outside of the Facebook connection who do -- both colleagues of mine. I thought there'd be more.

And outside of my Facebook groups, I haven't met anyone with a cochlear implant. Indeed, my school district's audiologist told me I'm the only teacher they've ever had in the district with one, and only a handful of students have had them.

According to the National Institutes of Health (NIH), approximately 35 million Americans have some degree of hearing loss. That's 1 in 8 people! But for reasons unknown, less than a third of those people seek help. Among adults aged 70 and older with hearing loss who could benefit from hearing aids, fewer than one in three (30 percent) has ever used them. Even fewer adults aged 20 to 69 (approximately 16 percent) who could benefit from wearing hearing aids have ever used them. The "ear-bud generation" is expected to increase those numbers exponentially, as the NIH estimates that approximately 15 percent of Americans (26 million people) between the ages of 20 and 69 have high frequency hearing loss due to exposure to noise at work or during leisure activities. (It's a freaking epidemic!)

What astonished me even more is that there are fewer than 325,000 cochlear implant recipients worldwide, with fewer than 100,000 of those living here in the United States.

I thought there'd be more.

It's that false world of Facebook-social-media-groups thing. Logging on to my Facebook account and perusing my cochlear implant and hearing loss groups changed my perception of reality. It only made me think there are a lot of us around. The truth is: we are few and far between. We've simply found our way to a social media group that has connected us with others who are like us: sorting us together by our unique experiences. And it makes us perceive that there are many more. Together we find comfort, encouragement, information, and comradery. And together, we don't feel so alone, even when we are.

It is a paradox.

http://www.nidcd.nih.gov/health/statistics/Pages/quick.aspx

Saturday, March 7, 2015

Laughing Out Loud

Hi. My name is Bonnie. And I have hearing loss.

The words that so easily roll off my fingertips and onto my computer screen aren't so easily said. At least not said without making an excuse or apologizing for an ineptness that I too often perceive in myself as a result of my hearing loss.

I have hearing loss. Not just a little bit, either. Without my hearing devices, I am virtually deaf. I can barely hear a thing. And with them, I am hard-of-hearing. As good as I think I am at context and filling-in-the-blanks of words I miss in an average conversation, I make a lot of mistakes:

"No, thank you," I say to the waiter who just asked me a question. I'm assuming he asked if I needed a refill. "Mom," my daughter says, "he asked if everything tastes ok." And we laugh out loud. But inside, I'm cringing.

It's been just over two years since I was thrust into an unfamiliar world of muffled voices and muted sound. Admitting that I am deaf is the easy part. Saying it to others -- not so much.

And when I finally do utter those words, it's often said with an apology for asking someone to repeat themselves for the umpteeth time or for a misunderstanding in a conversation or for asking for something I need to help me hear better.

Why is it such an embarrassment? I think about it a lot.

I think my hesitance comes from the stigma that hearing loss carries in our society. Hearing loss is often associated with old age. With helplessness. With ineptitude. Hearing loss jokes abound. Even greeting cards make light of old-timers who can't hear their friends and spouses. They evoke a lot of laughs. And the laughs are usually at the expense of those who, like me, cannot hear.

Truth is -- it's not funny at all. Hearing loss is an invisible disability that affects more people than admit it. If they would admit it, they would know how serious it is. And maybe the conversation about hearing loss can proceed without disparaging jokes, self-deprecating remarks, and age-old stereotypes that need disposed of.

Hearing loss isn't funny. Neither is asthma or diabetes or stroke. Where are the jokes about those?

Indeed.

(Thanks to Gael Hannan for the inspiration for this post.)

Sunday, March 1, 2015

New and Improved

Today is my 4th day with the new SCAN (scene classifier function) software from Cochlear. The new program is adaptive, and it responds to my listening environment by scanning for voices and changing the program automatically for different environments, providing me with the best listening program instantly. Under the old program, I had to change to different settings myself. This meant having to carry my remote assistant with me everywhere I went. It was cumbersome, I thought. The SCAN does the work for me and faster than me.

I must say that it has made a remarkable difference in the quality of my hearing already. My audiologist downloaded the new software into my N6 processor on Thursday with a warning that it would probably take me a couple of weeks to get used to it. "Some of my patients who've had the old software really hate SCAN," she said, "so I'm going to leave your old map on the #2 setting of your remote in case you want to go back to it. But really try hard not to go back until you give it a couple of weeks."

It didn't take me long to realize the automatic scan program is exactly what I want in my CI. The most noticeable difference is the muting of background noise. My CI had a constant "gurgling" of background noises -- from my car engine, the motor on the refrigerator, the fan of the heater, or any other typical background noise that normal-hearing people can filter-- noises that inundated my ears with constant and often annoying sound that made it difficult for me to focus on things I really wanted to hear. In truth, it drove me nuts.

The new software also makes it possible for me to use wireless accessories to hear the phone and TV. I paired my CI with my husband's wireless accessories. His hearing aid company and Cochlear are partners, so the accessories he had are compatible with my CI. The phone clip was absolutely awful. I won't be using it again. But listening to TV is a little better now than before.

This new program is so quiet that I find myself touching the microphones to make sure the CI is still on. Yet voices come through with perfect volume. Out of curiosity, I switched to the old map for a few minutes to compare it with the new SCAN program. The gurgle was still there, and it was loud. I won't be going back to that program anymore. It didn't take me a couple of weeks to know that SCAN is going to be better.

I have to admit that I have found CI hearing to be less than stellar. I listen to the accolades of other recipients and wonder why I'm not as thrilled as they seem to be. Though I can hear a great deal more with the CI than without it, and I don't regret my decision to get one, I have never been truly appreciative of the quality of the sound that comes through. Practice and focused listening exercises have made little improvement in that quality. My audiologist says it's because I know what things are supposed to sound like because I can still hear with my hearing aid in my other ear. That constant comparison is a continual reminder of how different it is to hear through a CI. The CI is limited. And I'm a perfectionist.

I am new and improved. Like any piece of technology, updates and improvements to my CI are a part of my life now. I have hope that these improvements will make things better and easier for me to hear and function better. At the very least, maybe they will help me appreciate my CI more.