Of Diseases and Disablitites and Silly Games

Several years ago, the "bra color" statuses on Facebook made national headlines. Ever since that time, it's been a nonstop whirlwind of copycat games whose intentions are meant to raise awareness for breast cancer or any number of other afflictions. It began a pathetic trend that has no end, it appears.

This morning I received private messages from a couple of friends asking me to join yet another game for breast cancer awareness. It seems I commented on a silly status they'd posted and got "caught" in the game.

The statuses, however, are cloaked in secrecy and have little to do with raising awareness as much as it just makes me want to stop commenting on other people's posts. No one knows there's an underlying message, or that it is meant to raise awareness, unless they comment on the post and get trapped caught in the game, too. The first line in these messages was "You shouldn't have commented." That's for sure, I thought. And I immediately clicked the "leave the conversation" button.

My honest opinion is that these diseases, ailments, disabilities, and afflictions shouldn't be relegated to impudent Facebook statuses. Real people suffer and are disfigured for life because of cancer, and many lose their lives. There are few of us who haven't been affected by cancer in some way. I have several friends who are both survivors or were casualties of this horrible disease. They are the human souls in this struggle, and their memories should not be consigned to some frivolous status that claims you've won $900 in the lottery.

If you want to raise awareness, stop posting statuses with such disrespectful levity and post your outright support on your status instead. Donate to organizations that research and treat the disease. Volunteer at the chemotherapy center. Drive patients to and from their treatment. Hold their hand. And lend a real hand of friendship. But stop the games.

I am posting this for those I've known who've lost their battle: Carla, Kelly, Amy, Allison, Edna, Janice, Cyndi, Addie, Cathy, Ron, and Barb. I am writing this post for those who are fighting their battles now: Barri, Helen, and Kay. I write for those who've conquered once, but live in dread that it will return: Suzette and Marta and Cindy and Nance. And I write for those who struggle with diseases and conditions known and unknown, visible and invisible, shared and private. Each one.

It's not a game.

I just gotta say it...

There are many groups on social media for innumerable medical ailments and afflictions. I admit -- I'm a member of some of them. Each group touts the members availability to offer "support" and advice to people with similar conditions. Sometimes these groups can be very good. They offer immediate feedback or relieve anxiety about concerns.

But lately, I've noticed an abundance of misinformation being shared. Things like whose doctor said what and whose did not, and you should do this or not do that. People come to the groups seeking advice for things they should be asking their doctor, and I can only assume that many of them are following the advice of people they don't know and who don't know them. It seems everyone has an opinion, and apparently, doctors' advice varies widely with every individual case.

It's a regular National Enquirer.

You'd think I'd know better, but I continue to visit these groups and read the posts and comments. And then I find I'm sitting on my hands resisting the urge to counter the foolish advice that is given by well-intentioned, but misinformed or ignorant members. It's hard. Some people take a little bit of information, combine it with their personal experience, and add a whole lot of stuff from God knows where. They get people upset and worried over half-truths. I've even seen comments advising people to go against their doctors' advice. Some people think that adding the catch phrase, "my doctor told me" somehow legitimizes their advice. I've read things I'd consider not just foolish, but dangerous, as well. I wonder how many people have been injured or worsened by heeding advice to "do this" instead of what their doctor said.

At times, I've questioned my medical team about some of the things I've read. It's usually met with a polite smile and information that corrects or refutes the misinformation, and then they tell me to stay away from "those" sites.

We are not doctors.

We don't know the individual medical histories of the people who are posting. Nor do we have years of medical school education or medical practice to support our beliefs on a medical topic. People have a tendency to grandiose the details of their conditions, as well. They weave tall tales of long-suffering. It seems like everyone is trying to "one-up" everyone else, and those "pearls of wisdom" that are shared were earned through personal suffering.

Sometimes, I just can't stand it, and I have to post a comment that reminds people not to seek or give medical advice on the social forum, but to contact their doctor or other members of their medical team.

It's usually met with disdain. People don't like to be called out.

Here is the truth: Having a cochlear implant or sudden sensorineural hearing loss or any other condition does not qualify me or anyone else to give medical advice to another person any more than having had surgery qualifies us to perform surgery.

We should be more cautious about what we post and things we advise. And we should listen to our doctors over social media.

Now there's some advice I will heed.

I'm Wired.

I confess.

I'm wired. I have a dependence on electricity.

When I got my cochlear implant, I had no idea how much electric this little device and all of its accessories could consume. From the hundreds of disposable batteries to the dozens of recharging cords, my world has become a messy tangle of wires, and cords, and recyclable batteries.

The problem is in finding a way to recharge all of the necessaries each night in a convenient, safe, and neat way. Each device has its own cord and connector. The cord for the Zephyr dryer doesn't fit the battery charger. And the connector for the phone clip doesn't adapt to the remote assistant. Throw in my cell phone, Nook, alarm clock with a bed shaker, iPod, bedside fan, lamp, and iPad, and I have an immense maze of cords and wires -- each vying for space on my nightstand and tripping me up in the dark of night.

Adding power strips, outlet adapters, and extension cords only seemed to compound the spider web of cords beside my bed. I experimented with plugging in my various devices all over the house instead -- the remote assistant on the window sill of the dining room; the dryer on the table in the TV room, the battery charger on my husband's night stand -- but making nightly rounds to plug everything in and then reversing the order each morning to gather my things again was becoming a problem. I sometimes left for work without important accessories. I had to find a better solution.

I searched the online world and local electronics stores for charging stations that could end my wired chaos and relieve my OCD, only to come up empty-handed.

I know I'm not alone in my suffering. My Cochlear Facebook group has frequent posts from members seeking the same solution to the "electrical dilemma."

So I got crafty this weekend. And came up with this. It's not perfect. But I feel a lot better now. 

1. A box to hold a power strip and cords.

2. A hole for the power strip cord.

 3. Two holes to thread the charger cords
through the back of the box.

4. An organizer to hold extra accessories.

5. My devices are on top of the box for easy access.

6. The finished project.

Three Years

three years
three years deaf
coping

three years
three years muffled
adapting

three years
three years silent
accepting

three years
three years unflinching quiet
transforming

three years
it seems much longer

Change is Hard

Our ears and brains have worked together for so many years that we're able to do a multitude of things simultaneously. Multitasking while watching a TV show, listening to an iPod, reading a magazine, and engaging in casual conversation -- things an ordinary person can do without thought. Things I used to do, too. It's easy to take hearing and listening for granted.

But I'm not exactly ordinary anymore. Even with a cochlear implant, my listening comprehension is pretty bad by "normal hearing" standards. Hearing is a passive activity for most people. It seamlessly and effortlessly blends in with all the other things that busy our lives. They don't even know they're doing it. It's that automatic. But my hearing isn't so passive anymore. I have to focus and actively attend to the listening task.

Hearing is the easy part. With my CI and hearing aid, I can hear quite a lot of things. It's the understanding that takes so much effort now. Having been an accomplished multitasker before I lost my hearing, I am continually frustrated now by how hard it has become to hold a simple conversation in my house. It takes a lot of brain power just to hear, let alone understand.

Distractions abound. Not just for me, but for others, as well. Trying to talk to me while you're washing dishes, sifting through mail, shuffling through the room, flipping through the TV channels, eating a sandwich, even interrupting me while I'm engaged in other activities to ask or tell me something is pretty much a recipe for a comprehension disaster. Ambient noise is a huge problem, and deciphering voices and words from that noise can be arduous. My attention to a task-at-hand has become incredibly focused since my hearing loss -- and I'm not so good at multitasking anymore. I need people to give me some wait-time, so I can switch my attention from one task to their conversation. No one can assume I've heard or understood any part of the conversation without that wait-time. Not even me.

I'm not the only one who gets frustrated.

"It's not like we mind repeating ourselves," my daughter explains. "But after the third or fourth time, it's just not worth it, especially when it really isn't important." That's why I get the dreaded "nevermind" so often, she tells me.

There are things all of us could do to make it better. I don't know why we don't. Change is hard.
 

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.