Silent Mornings

I often find myself awake before my family on weekend mornings. It's a time for me to enjoy the peace and quiet before the hustle and bustle of the day begins.

Leaving my hearing aid and cochlear implant processor behind in my trusty Dry and Store, I relish these silent mornings -- these times of muted quietness. It's a good time to reflect and ponder the world's problems and mine, as well. Uninterrupted by the noise pollution that plagues our cities and neighborhoods and homes. I can find my balance in my quiet ruminations. Sometimes, I catch up on world and local news online, or with friends and family on Facebook.  I brush the dog and love on her a little bit. I drink my coffee leisurely and indulge in a bagel with cream cheese. I work a crossword. I ponder my week's lesson plans and browse education blogs for ideas. When weather permits, I sit on the patio and soak in the sunshine and the cool breeze against my face. And I write.

I've made peace with the silence.

It wasn't always so.

When I lost my hearing three years ago, I was abruptly thrust into perpetual silence. It was scary, to say the least. In a world that is inundated with noise, silence is a formidable presence. It was the elephant on my back. I could no longer fill that silence with music or television or conversation, as others do. It was a lingering and unrelenting presence that followed me wherever I went. I had to make peace with it, or I would go mad.

Hearing aids helped. But it's not the same. They are a necessary tool for communication with a world that requires --- sound.

But for now, I will be happy in this morning's silence. Soon my home will be filled with a mosaic of sound: voices and dishes clanking and water running and televised football games and music and laughter.

And I will retreat to my bedroom where I will don my hearing devices for this new day so I can join my family in this thing we call life.

Miracles, Part II

I have written before of the physical miracle of hearing -- how this intricate and minute mass of bones and tunnels and nerves and muscles and membranes and fluids and organs and sound waves work seamlessly together to produce this sense that we call hearing.

It's a freaking, awe-inspiring miracle from God. 

But it is perhaps the most fragile sense that we have. It's fragility is a reminder that it is a gift to us. Something we can lose through neglect or abuse or random and coincidental events in our environment. When a breakdown of any part of this delicate system occurs, our hearing is affected -- even when we don't perceive it ourselves; and when the fine parts of our hearing organs are damaged, they cannot regenerate themselves.


I was reminded of how fragile our hearing is today. The fluid that bathes the working parts of my ears backed up -- clogged from its natural release by an inflammation I cannot see. It was a process that probably began several days ago with an exposure to some virus or germ or allergen -- and it reared its ugly influence days later in the form of an earache -- and that dreadful feeling of more hearing loss.

A trip to the weekend Urgent Care reckoned me with a diagnosis of a conductive hearing loss and a migraine trigger that could be remedied with a steroid and pain relief injection. Lucky for me that this once, I would soon be back to my "normal" in a few days. A written prescription insured that the inevitable rebound headache could be self-treated at home with more pain relief medication.

The effects of an opioid narcotic is a mystifying sensation. Teetering on the brink of unconsciousness is both an unsettling and strangely satisfying experience. The line between asleep and awake are blurred.

You roll over in bed and catch a glimpse of the clock. It is 2:10. As you drift into your semi-conscious state, you are aware that you cannot trust your senses anymore, and you don't care. It is calming and pain-free and beautiful. Your night-dream and reality flow together. You know the difference, and the effect of the drug lulls you into its world effortlessly.

You are acutely aware of your breathing. It slows. And the rise and fall of your breathes are refreshing and rhythmic. You are gently transported into a surreal world somewhere between consciousness and sleep. You lay in a field of grass and see the bright blue of the sky. You feel the softness of the wind against your face and you savor the coolness of the air in your lungs. in. out. in...out. Your aren't asleep or awake anymore.

You feel the waning beat of your heart. And you know that you are slipping into unconsciousness, but you are completely knowing that it is happening. You realize your heart isn't beating anymore, and you call to your husband, "Can you feel my heart?" But you see that he no longer sleeps by your side. He has drifted across the ocean on a raft -- and just as the tide wafts him over the edge of the horizon, you catch a glimpse of the air in his sails. in. out. in. out. And you know that you are breathing.

Then you feel the gentle pop in your ear. You know the steroids are working their purpose. And through your semi-sleep, you repeat its name in your mind: dexamethasone. You know its name. And a little prick in your gluteus maximus jolts you enough that you turn over in your bed. You got a shot earlier. Dexamethasone. You are awake. You catch a glimpse of the clock. It is 2:15. But the effect of the narcotic still lurks in your body. You close your eyes and you begin your awake-dream again. It's something you've done several times tonight.

It is when you wake in the morning, that you know the medications have calmed your body's defense mechanisms and allowed the miracle of healing to occur. Your headache is nearly gone and your ears are easily releasing the pressure that has held them captive for the last few days. You can hear better. And you become aware that all that is lost is not gone forever. There are still miracles for you.

Miracles. And this is the only thing I need -- and want -- to be thankful for right now.

God Bless the Audiologists

An audiologist is on the front line with those of us who've sustained hearing loss. And they work to make our lives easier and more productive, in spite of our audiogram levels. They tell us the naked truth about our hearing tests and then hand us tissues when we cry out our frustrations. They are masters of hearing devices and use their skills to program each one to our unique needs. Sometimes it's not enough. Like us, they are limited by our individual capacity to hear (or not hear) and the technology they have available. God bless the audiologists.

I've been asked to speak next week to a college class of audiology students. My school district's audiologist teaches the class and said my story was inspirational.

I've been trying to think of something to say about my hearing loss and how much my life has changed that's worthy of the word inspirational.

I haven't come up with much.

The truth is-- I don't see that I'm much different than anyone else who's faced adversity in their life. I cope and adapt and keep plodding on. And like so many others, I cry and whine and complain a lot, too. It's just the way it is.

I think the message I want to purvey to these future audiologists is how unfriendly the world is to anyone with any health conditions that make them "needy".  And the deaf and hard of hearing are a fairly needy group. It's that "neediness" that's so unfortunate to me. Really. I hate it.

I need people to be patient and understanding. I need them to speak up. I need them to articulate and speak clearly. I need people to face me when they are speaking.  I need people to take turns when having a conversation instead of jumping in while others are speaking. I need them to understand that even in the best conditions, I still miss about a fourth of the conversation and information that is spoken. I need closed captioning on TV and often in movies, too, and I can't talk to people while I'm trying to listen and read captions. I need special accommodations to continue working my job, and those accommodations are just as much a nuisance to me as they are to others. I need people to understand how utterly exhausting hearing and listening has become, so when I take my hearing aids out at night for a break, I need them to stop telling me to put my hearing aids on.  I need them to know that hearing aids and a cochlear implant don't "fix" my hearing, and I am still hard-of-hearing with them.

It can be maddening, at times.

Enter the audiologist. Mine has saved my sanity -- more than once. She assures me often that I am not crazy or needy or demanding or whiny. I'm deaf, that's all. She's my lifeline. I couldn't have made it without her.

And I want these audiology students to know how important they will be to their patients, too.

Know Your Medical History

I need to complain.

Sudden sensorineural hearing loss deafened my left ear three years ago. Because I've also had bouts of sudden sensorineural hearing loss in my right ear, I've earned regular checkups with my otologist twice a year even though the ear has remained stable for over two years.

I had one of those checkups last week.

I had complained previously that I'd had a couple of dizziness episodes after flying, and asked if it could be related to the cochlear implant surgery. I am a frequent flyer, and I'd never had any problems before with changing pressure or dizziness. My doctor explained that my sinus disease was the more likely culprit, and suggested I use decongestants and nasal spray prior to flights to keep them open. So I did. And I added a Dramamine tab, too. Since then, I haven't had any other problems when flying.

So his casual statement last week that he wanted to see me THREE times a year to monitor my Meniere's came as an outright shock. "I don't have Meniere's," I protested -- probably a little too loudly.

He stumbled and stuttered in his response, and tried to tell me that I had the disorder in my right ear. And the irregular hearing loss and occasional dizziness were symptoms. I felt like he knew he'd been caught off-guard and was covering his tracks rather than admitting he'd made a mistake.

I argued, of course. I pointed out that I had none of the symptoms of Meniere's and that he had told me on more than one office visit that my dizziness after flying and the continuing irregular hearing loss were related to sinus disease and Eustachian tube dysfunction, not Meniere's. I even told him he probably should check my chart again. I protested that the increase in checkups to every four months instead of six months wasn't necessary since my audiogram showed my ear to be stable.

He disagreed, and marked my discharge paper for 4 months. Then he smiled as he walked me out. The appointment desk wouldn't budge on the date either. I tried.

Checking my online health report at home, I noticed he'd coded my chart with a diagnosis of idiopathic acquired sensorineural hearing loss, just as he's done for the three years since this all began. Not Meniere's. I guess he looked back at my chart.

I am still flabbergasted that he would toss out a misdiagnosis so easily. I believe he may have confused me with other patients or he didn't review my chart before he came in to see me. But I was diligent.

There's no excuse for any doctor to enter an established patient's room and make such a mistake, in my opinion. I pay him to be better than that. And he is making decisions about me that could affect my health for many years to come. He is a highly skilled surgeon, and he is very knowledgeable about hearing loss and diseases of the ear. But I am more than a little ticked at this misstep. I'm not fooled easily. I am fully aware of my medical history and diagnoses. You should be, too.

I have not decided if I will keep the appointment in four months. Or if I will keep this doctor.

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.