Saturday, May 16, 2015

And Then You Are Summoned

Jury duty.

It's the bane of our American judicial system. That damned jury summons.
I know there are some people who actually love it. But I'm not one of those people. And the fact that my hearing is so pathetic causes that panicky taste of bile to rise in the back of my throat.

I can't even understand half of my husband's conversation across the room. How can I possibly understand the barrage of words and sounds in the courtroom?

I'm not even sure I can request an excuse from my doctor -- he believes the CI removes all communication barriers, silly hearing man who doesn't really know what it's like to hear with a CI...

So I call the number on the back of the summons to ask if hearing accommodations are available.

"Please enter (inaudible-inaudible-inaudible) now." What? I'm speaking to an autobot? Really?
"Please enter (inaudible-inaudible-inaudible) now." It repeats.
I take the chance that it is asking for my juror ID, and input the 12 digits carefully.

"You entered zero (inaudible-inaudible-inaudible). Is this right? Please enter (inaudible-inaudible) now." I press zero hoping to get an operator. It disconnects me. I redial the number and get the same response. Only this time, I don't press zero. I decide to wait. Surely the automated voice response system will transfer me to a real person if I don't respond. Waiting-waiting-waiting...
"I do not understand your response," it says. Welcome to my world, I muse. "This call will now be disconnected."

WHAT?!!!! I try the number again -- this time intent on listening as hard as I possibly can. Still no success. I just cannot understand the autobot. My only option is to call the courthouse directly and try to speak with a real person.

After being transferred to a number of departments, I finally arrive at my destination and speak with a clerk in the "juror department." She's just a clerk, and cannot answer any questions about hearing accommodations for the hearing impaired. "We can provide sign language interpreters for you," she says. "I don't know sign language," I explain. "I am hearing impaired. I have a cochlear implant and a hearing aid. I will need real-time captioning services or a telecoil neck loop system to use with my hearing devices."

She tells me she doesn't know what those things are and transfers me to someone else. It's another clerk. "We can provide a sign language interpreter for you," she says. Here we go again.

I am finally directed to a middle-manager. After telling her what I am requesting, she tells me that she doesn't know if those things are available. "We can give you a sign language interpreter," she says. Sigh. "I think you can be excused," she tells me, "but you'll need to call the number on the back of your summons to get that done."

Seriously. It's a vicious cycle.

Sunday, May 3, 2015

Some days are almost normal...

...and then you have several days in a row where you just can't understand a damn thing.

I don't know why or how that happens. My doctor promised that the cochlear implant would be consistent and reliable for hearing. But I'm telling you: it just isn't so.

Some days, it's a wonder. Then out of the blue, I find myself once again looking blankly at the speaker, with those raised eyebrows and doofus expression and uttering the words I dread the most, "What? What did you say?"

First, at the store where the screaming children of the blissful mother stand behind me while I'm trying to answer all those stupid questions the store clerks ask before they ring your merchandise and tell you what your total is. Must they really have my phone number and zip code and email address and name of my first born for me to buy a bottle of shampoo? Can you not just tell me what I need to pay and let me leave before I turn around and use my teacher voice on those children!

Then at the drive-thru, where I'd just like to have a simple cheeseburger with all the fixings. "Would you blah, mumble-mumble, glick-blah?" What? "Would you blah, mumble-mumble, glick-blah?" (Yeah. That's what I thought you said.) Seriously, is it really necessary for them to ask if I want lettuce and mustard and ketchup and tomato and cheese on my cheeseburger? Did I not just order a cheeseburger? With all the fixings?

Retiring to my home and hoping for a quiet reprieve proves futile, too. TVs and dogs and daughters and phones and husbands and a multitude of noisy distractions ---

I've said, "What?" way too much today. I'm tired.

Is it any wonder that I find solace in the written world of blogging and chat rooms and Facebook? It's here that I don't have to rely on my poor, poor hearing to decipher and comprehend the intentions and conversations and questions of others. It's here that my hearing - or lack of - matters naught.

Good hearing days, or bad. It's a great equalizer, it is.




Tuesday, April 21, 2015

Nightmare

I have a student who has a hearing aid. He was recently diagnosed with a hearing loss and sported a new hearing aid a few weeks ago. Since he also has Down's Syndrome, he relies on the adults in his life to help him be responsible for it.

I was called away from my classroom last week for a family emergency, and a temporary substitute was moved into my classroom until I could return. It's unfortunate that recess and lunch fell within that time. The substitute wasn't aware that I check this student's hearing aid and mold to make sure it's securely in his ear before recess.

He lost it. Sometime between the time he walked from his special education class, into my room, played on the playground, ate lunch, took a bathroom break, went back to his special ed class, returned to my room where I helped him get his backpack, and walked him to his waiting mom -- he lost his hearing aid.

It wasn't to be found in the classroom or in his special ed room. We didn't find it in the bathroom or the lost and found. No one had turned it in to the office. We could've searched the playground and pea-gravely surface under the big toys, but we knew it would've been futile. Mowers had been dispatched from our maintenance department to mow and eat the weeds on our playground the very day the hearing aid managed its escape.

The hearing aid was insured. Good move for a parent with a young child. It'll be replaced soon. And I'll try to make a concerted effort to mention the hearing aid security check the next time a sub covers my class.

I've dreamed of hearing aids the last few nights. Little blue hearing aids with red and blue ear molds and Spiderman stickers on the side. Little hearing aids lost under big toys on children's playgrounds. Or swings and slides. Lying in the grass waiting to be found. Whistling feedback at passersby. "Look at me! Here I am!" Quivering on the ground, but overlooked. Unnoticed, except by the whirring, swirling metal blades that gobbled it up and spit it out -- unrecognizable.

I awake in a sweat and realize it's only a dream. No. It's a nightmare.

It's not real. But I still take a reassuring peep inside my Dry and Store. Resting safely inside -- my little hearing aid and my N6 processor. Whew.


Sunday, April 5, 2015

Miracles

Today is Easter. It is the day that Christians across the world celebrate the resurrection of Jesus Christ -- celebrations of worship, family, food, Spring, renewal, and the Easter Bunny. Somewhere in time, the commercialism overpowered the religious tone of this holiday.

This morning, I arose early, and thanked my Lord for another day on this earth. I thanked Him for His sacrifice and His grace, and I asked for His forgiveness of sins past and future and His blessing on my family, my friends, and myself.

I did not get dressed in Easter finery and attend worship in a church. I left the church I loved several years ago when the politicalization of the church colored the words and message of Christians with things neither of God nor reflective of the Christ I had read about in my Bible and learned about in my Sunday School -- a decision that once filled me with guilt, but now makes my heart sad. My religion was hijacked by Pharisees.

Instead, I perused my Facebook news feed, as I often do on Sunday mornings. Just as I expected, it was filled with Easter memes and Biblical verses about the resurrection and pictures of children hunting eggs. Easter wishes from people I've come to expect them from -- on this day anyway. One day of peace and love and civility. It's a miracle.

Miracles are a part of our lives, both big and small. We often pray for and expect the big ones. We've been conditioned by our faith in God and things greater than us, to believe that if we just pray earnestly enough and live a life deemed worthy of God, then those miracles will come. And we believe falsely that we are blessed by God because of the things we have or can get.

But in our desire to have answers to our prayers, I believe we ignore or fail to notice the multitude of miracles that are a part of our everyday existence. So we often suffer blindly and miss out on blessings because we are waiting for something we deem better and more suitable than what we have now.

There is a Facebook group that I belong to where several people suffer gladly with sudden deafness, refusing to accept the medical science and technology that IS a miracle -- suffering caused by an antiquated mindset that they will be healed miraculously if they just persist in their faith. Living miserably and inflicting their bodies with experimental treatments in the hope of getting their normal hearing back --all the while refusing to acknowledge the miracle right in front of their eyes -- the miracle of medical technology that makes hearing aids and cochlear implants possible. They reason this miracle away by saying that accepting these technological miracles for themselves will somehow limit God's ability to heal them in the future. "Getting a cochlear implant permanently damages your hearing," they contend. But if we believe that our God is all powerful, then how could we possibly believe a little thing like a cochlear implant will keep Him from healing us, if He so chooses. So why be miserable when I can hear now?

It's not the miracle they want. I understand. And it makes me wonder how many miracles I've not claimed because I was waiting for grander things...

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.