Of Curve Balls and Such

Curve ball: (n) slang. Something that is unexpected or designed to trick or deceive, usually unpleasant.

I have long thought that my history of deep vein thrombosis and pulmonary embolism were to blame for my hearing loss. Even though my otologist deemed my case idiopathic, I've never been fully satisfied with that explanation.

I lost my hearing suddenly one week, and the following week, I was diagnosed with a fully obstructive pelvic blood clot. I don't consider it to be random or circumstantial, in spite of what my doctors have told me. Hearing loss has been attributed to a loss of blood flow to the inner ear. And the loss of blood flow created by the obstructive thrombus was silently working in my body well before I knew of its presence in my leg the following week. It's too coincidental for me to think they are not related.

What I didn't expect was that the chronic deep vein thrombosis I have dealt with for many years was exacting an irreversible toll on other parts of my body, as well.

Summers are for resting. Swimming, vacations, sports, and play. Sitting in the office of a cardiologist wasn't exactly on my list of things to do this summer, but I found myself there several times as he searched for answers to a heart issue that arose almost as suddenly as my hearing loss. The sudden symptoms mimicked a pulmonary embolism -- the racing palpitations and breathlessness and tightness across my sternum -- and in spite of the filter deep inside my inferior vena cava, I am acutely aware that blood clots can still slip past this protective barrier and enter my heart and lungs.

But the CT scan of my lungs revealed no clots. It's another curve ball.

The cardiologist immediately focused on my heart problem as a symptom rather than a condition. Atrial flutter, enlarged atria, and premature ventricular contraction (PVC) are symptomatic of a greater health issue, he told me. Blood studies, ultrasounds, echograms, a Holter monitor, and a DNA test were ordered and medications prescribed to relieve the symptoms. He firmly believed my heart had been damaged by my DVTs -- those silent, invisible killers that form in the deep veins of both of my legs.

My diagnosis of chronic deep vein insufficiency was no surprise. When my doctor explained that the condition is linked to a recessive, genetic factor that causes DVT, it wasn't an earth-shattering revelation. I'd long suspected it. The surprise was how dramatic its effect on my body has been. I wasn't prepared for the words, "It's a progressive disorder." It can be managed and slowed, but ultimately, it will progress and worsen, he told me.

I'd heard those words before. "It's a progressive disorder." They'd been used to describe my Sudden Sensorineural Hearing Loss almost three years ago. It was a curve ball that altered my life considerably.

And now I'm thrown another. We caught this one fairly early -- before significant damage to my heart had occurred. But it's left me questioning and contemplating those awful "what-ifs" again. And it's left me a little sad. My new medications line my counter top and my online searches now include fashionable compression stocking wear. This is not the future I had predicted for myself. Not at all.

Life throws us curve balls. I seem to have my share of them. It's not, so much, the curve ball itself that surprises us, but the disappointment that our expectations have not been fulfilled. Curve balls force us to duck or dodge, and alter our game plan yet again. Maybe there's a greater plan in play. I don't know. 

But I'm still in the batters' box. And I'm swinging away. Who knows where the ball will land.

And then there are glaciers...

There aren't many things that move me emotionally. Emotional tears just aren't my thing. I seldom cry at movies, over books, or stories meant to tug the heart strings.

Don't get me wrong. I'm not unemotional or cold-hearted. I just don't let my emotions fly from either end of the spectrum. When they do fly, it's usually on the side of anger. Honestly, I find the touchy-feely side of human emotion to be discordant with my pragmatist ways.

But then, there are glaciers. And glaciers can change everything.

During a recent trip to Alaska (my dream vacation), I visited the Hubbard Glacier, North America's largest tidewater glacier. As our cruise ship approached the gigantic glacier, naturalists on board shared facts and encouraged passengers to get outside to experience the full sights and sounds of the glacier.

The Hubbard Glacier

They speak, you know. Glaciers speak. Termed "white thunder", the movement of the ice rivers and the colliding ice crevasses creates loud and sudden booms that sound much like thunder, even though the sky is clear. On the crowded deck -- hundreds of people stood hauntingly still and quiet -- awestruck at this amazing ice river. Watching and waiting to hear. And then it happens. The thunder. White thunder. And the breathy gasps of onlookers.


But it wasn't the thunder that moved me to tears. It was something much, much smaller.

As our ship drifted in the milky, silt-laden water beside the glacier, the naturalist pointed out the small trails of ice floating from the glacier. "Listen closely," he said, "as the ice speaks to you -- weaving it's tales of life."

These aren't just rivers of ice. They are rivers of life -- flowing from the four hundred year old ice fields where they were born -- making its way from soaring mountains to water's edge. It's here to tell you its story. The story of how it has traveled far from its icy home to bring sediment and soil and nutrients to the fjord that sustains an amazing variety of life.

"Listen as the ice speaks to you."

And it did. Crinkling, crackling, crunching, snapping, and popping, like Rice Krispies in a bowl of milk. Softly, but just loud enough to perceive it -- if you listened intently.


As I so often do, I slipped the coil magnet of my CI from my head to compare my CI hearing against my hearing-aided ear.. The sound was lost. But with the CI, the ice streams spoke to me. It was a moment I found because of this marvelous piece of technology I love to hate. I can hear.

And then I cried.

Awareness

When people ask, I love to tell them about my cochlear implant. It's an interesting piece of technology, and it works small miracles for those who've lost their hearing.

Success with a cochlear implant is as unique and varied as the lives and circumstances of those who wear them. Much of the literature I've read about them concludes that those who experience the greatest success with word discrimination and understanding are the very young, who are implanted before and/or during language acquisition, or those who've lost their hearing after language acquisition. People like me, who've suffered sudden deafness, have remarkable success, especially if implanted sooner than later. It seems the longer the auditory system goes without sound stimulation, the greater the atrophy of the auditory nerve and receptors, and the harder it is to rehabilitate the hearing system, if it's possible at all.

Some people are just curious about that "thing" behind my ear. I realize I am rather unique. The National Institute of Health reports that only about 58,000 adults and 38,000 children in America have been implanted with cochlear devices. There are a lot of people who've never seen a cochlear implant, or even heard of one. Some celebrities on television and the news have made cochlear implants more widely known in recent years, but cochlear implants are still far and few in the general population. It's often mistaken for a Bluetooth device, though there aren't many similarities in its appearance other than it's worn on the ear.

As a teacher, I attend frequent professional development workshops, and I'm occasionally approached with questions about my cochlear implant.  This week, I was involved in a week-long training, and had several questions, not only about what a cochlear implant is and how it works, but also about hearing loss in general. Ask me a question and I'll probably tell you more than you wanted to know.


It's no surprise that I am adamant about hearing loss awareness and education. Being uneducated about its impact on the quality of life and on student learning is not okay. I have written in this blog about children in my class with hearing loss, and how it remained unnoticed by either parent or teacher until they entered my classroom. We must be more diligent in recognizing and treating hearing loss. It's a serious health epidemic that cannot be ignored simply because it's perceived as an inconvenience or an inevitable nuisance of growing older. Truth be told, wearing my cochlear implant proudly in plain sight has raised awareness that hearing loss is not just something your grandma has.

The facts are staggering. According to the National Institute of Health, 2 to 3 out of every 1,000 children born in the United States today are born with a detectible level of hearing loss in both ears. 90% of those are born to hearing parents. Approximately 15% (37.5 million) of American adults over the age of 18 have hearing loss, and 1 in 8 over the age of 12 have hearing loss in both ears. 15% of Americans have high frequency hearing loss from exposure to noise at work and leisure activities. About 2% of adults between the ages of 25 to 54 have a disabling hearing loss. It increases to 8.5% in adults aged 55 to 64, 25% of adults aged 65 to 74, and a whopping 50% for adults over 74!

Not just a little hearing loss. Disabling.

And of those who are aware of their hearing loss, fewer than 16% of people under age 69 who could benefit from hearing aids have ever used them. Our national travesty is that many people who want hearing aids aren't able to access them because of their cost -- often running in the thousands of dollars -- and usually not covered by insurance.

I have a friend whose teenaged son suffered sudden deafness about the same time that I did. Because her insurance did not cover hearing aids, her son continued to suffer communication impossibilities until they were able to cover the cost of BiCROS hearing aids by themselves. He was finally fitted in a pair a few weeks ago. MORE THAN TWO YEARS AFTER LOSING HIS HEARING. And his hearing aids aren't even new. They were refurbished from a local hearing association. TWO YEARS!

This is simply unacceptable. As individuals and as a country, we should be doing better to address the issues surrounding hearing loss better than we are. Awareness is just the beginning.

It's time to bring hearing loss to the forefront.

*Stepping down from my soapbox*

For more information, about hearing loss, follow this link to the National Institute of Health.
http://www.nidcd.nih.gov/health/statistics/pages/quick.aspx

Trees and Birds and Songs

Twenty-one years ago, my husband and I planted three pin oaks, a red maple, four crape myrtles, and a red bud on our property. It was an enviable task for a property our size. Trees that would grow and fill our empty yard with tranquil beauty. Today, they stand as lonely, rustling giants in a neighborhood planted mostly with small ornamental trees. They provide cooling shade for our family and dogs on hot summer days and a sheltered break from the fierce winds that sweep across the southern Great Plains.

There were a few times we thought we were going to lose them due to infestations and drought and brutal storms that lopped branches and partially pulled their roots from the ground. Gentle nurturing and training of primary limbs helped them grow sturdy and tall. Be strong, we whispered.

I love trees.

They are sanctuary to a number of native birds -- starlings and sparrows, flycatchers and mourning doves, and an occasional cedar waxwing. Our trees are a nesting and shelter oasis for them. This morning I counted three nests in the lower branches, curious about how many babies our trees have born and fed. Empty now of those who left their nests many weeks ago; resting silent and sturdy and patient for next year's inhabitants. I could just make out tufts of Penny fluff I'd brushed from my dog and let float away on the breeze -- confident they would find their way into a nest or two. Here you go, I whispered.

I love birds.

Sometimes they are bold, risking an occasional chase by our dogs. They come to the covered patio to sneak a little kibble or a sip from the burbling fountain. They sit on the patio fence and trill their bird-song, thanking me for the trees and food and drink and gentle dogs who share their bounty with them. But other times, they sit in the trees and call to one another instead of to me. Fluttering from branch to branch, waiting for the dogs to lazily nod off for a late morning nap so they can glide onto the lawn and feast on the insects that live there.

Who could've known, so long ago, when the trees were young and the birds were not there, that one who would lose her hearing would love these bird-songs so? The trees knew, I think. And so did the birds. They were waiting to bless me on this cool, cloudy day. Waiting for me to sit quietly on the patio and hear them sing to me songs I can hear when I cannot hear any other.

We're here for you, they whispered. Hear us sing.

I Miss the Music

I can't hear music very well with my cochlear implant. Though I can hear parts of simple melodies, a few lyrics, and a hint of rhythm, the sound of music through my CI is sorely deficient -- lacking the rich fullness and subtle nuances of sound that make music what it is. Through the CI, music is rendered to a mere mechanical shadow of what it's supposed to be. It's much like the proverbial mosquito buzzing in my ear. It's not pleasant. Not in the least.

Focused listening has helped to some degree, but I haven't reached that magical place where listening to music is enjoyable, no matter how much I practice. It's so bad that when my audiologist deleted the "Music" setting from my programming to make way for the new SCAN program, I didn't even bat an eye. Most of the time, I don't pay much attention to how bad it is, as I still have a useable ear opposite my cochlear implant that compensates in most situations. I was never much for listening to the radio or an iPod, and having a CI has made that even less desirable. But lately, I find myself enduring bad music in movies and such, and with increasing regularity, I slip the coil from my magnet and just let my better ear take over, even as poor as that is.

It's a glaring reminder that no matter how good I get at hearing with my cochlear implant, it will never be as good as I wish it would be. I have little hope that I will hear music well again. No more concerts. No more operas. No more symphonies. It would only make me cry.

I'm not going to lie. It's a sore spot for me. Especially when I hear someone brag about how much they love listening to music with their CI. Their well-meaning advice for improving music enjoyment is a bitter pill. Simplistic techniques that only give me what I already have, but nothing more.

I try not to compare my CI success against what others have achieved, but when others talk about how good music sounds through their CI, I find myself slipping into that pattern of envy and disbelief. I walk a fine line between silently wishing I could love it too and wanting to say Hogwash!

Truth be told, I just don't believe it's that good -- even for them. (I know they will argue that with me.) Maybe I want too much. And maybe the limitations of my cochlear implant just can't give me what I want. I want more.

There are many things I've lost since losing my hearing. I miss the music more than anything else.

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.

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.