Tuesday, July 2, 2013

The Guinea Pig and the Machine

I went for another mapping of my cochlear implant yesterday. That makes three now if we're counting activation.

To be perfectly honest (is there any other way to be honest?), life with my implant hasn't been quite what I had hoped (but, it's probably been what I expected. "High hopes, low expectations," remember?)

The sound coming into my brain can't really be described as sound. Vibration, yes. Feeling, yes. Earth shattering shock, yes. But sound? Well, not so much.

Yesterday I worked with Ellen and an intern. Ellen is a patient, curious, relentlessly perky audiologist. I can tell when she works with me she really, really wants this to be a success. Instead of scolding me for not wearing my CI for three weeks, she said, "Let's see if we can figure out what's going on here." Into the booth I went.

She did not put me through the humiliating speech-recognition portion of the hearing test – sadly, I'm still at zero percent and she took my word for it. Instead we went through the usual "raise your hand when you hear the sound." Only in my case, it was "raise your hand when you feel the sound."

Then back to the office for the series of beeps and buzzes and seemingly endless questions. "Is this too loud? Too soft? Tell me what it sounds like when I do this" (types something into the computer and pushes a button apparently marked "send Shannon's head spinning into orbit." Shannon's head obliges.) It's difficult to honestly assess my progress in this portion of the map. The CI exacerbates the already raging tinnitus in my right ear (which is part of the reason I hadn't worn it for three weeks) and makes discerning what I'm honestly hearing from what I think I'm hearing a monumental task.

At the end of the "mapping," Ellen and I had a liberating conversation. "You are exactly where you should be," she said.

I was relieved but confused.

Ellen explained.

As it turns out, learning to hear with a CI in one ear and fairly good usable hearing in the other is a little bit of a challenge. The two ears are sending entirely different signals to my brain and my brain is revolting. It doesn’t like it and can't make sense of it --- yet.

Eventually, a year, maybe more, my brain will learn to make use of the two signals and something like sound will take the place of the rattling going on in there now.

At least that's the hope.

Certainly there is always the chance that this costly experiment will be for nothing, but until then, I will be wearing my CI daily. We've decided to focus on simply wearing it. "If you won't wear it because it's uncomfortable, it won't get better," was the way Ellen put it. "So we'll worry about practicing word recognition and sound awareness later. Right now we just want it on."

We dialed back the sound a little bit with the goal of turning it up in small increments as time goes on. It’s a struggle, but one Ellen and I hope will be worth it in the end. So, I'm pushing through the discomfort.


And looking forward to progressing – however slowly it may be.

Wednesday, April 10, 2013

Playing Ping Pong in the Dark




Today I'm three weeks out from having cochlear implant surgery. I'm scared, excited and a bit nervous. When we made the decision to go ahead with implantation, I qualified for implants in both ears and fell well within current FDA indications for surgery.

That's changed a little bit.

You'll remember from this post I described my ongoing struggle with fluctuating hearing loss and the progressiveness of this disease. My fluctuations got closer together, lasted longer and stopped responding to any kind of treatment. In February, my doctor and I assumed the hearing in my right ear was never coming back.

Surprise!

It has.

Around three weeks ago, I started fluctuating again – on the upside! Improvements would always be preceded by terrible tinnitus spikes and sound distortions, leaving me couch bound, clutching my head. Each time, once the tinnitus cleared up, my hearing was noticeably better. Why? Who knows? This disease is not only idiopathic, it is also ruthlessly difficult to predict.

In fact, it is this endless game of ping pong that forces many of my fellow sufferers to seek treatment for anxiety or depression.

Anyway, the improvements got closer together and lasted longer, and now I am officially back in the hearing world. With a little bit of help from a super cool hearing aid, I hear the birds, I hear the wind and I hear my son's voice! (I can hear without it, but the aid makes things clearer and more detailed.)

So, I called my audiologist.

"What are we going to do?" I asked.

"What do you want to do?" she asked back.

We talked about how long we think I have. The pros, the cons, the risks, the benefits of a CI.

In the end we decided to proceed with implanting the left ear.

And it all goes back to that "ruthlessly unpredictable" thing.

We know I will fluctuate downward again. We know this. What we don't know is when. Or for how long.

This last "episode" lasted five full months! What will the next one bring? Will it be tomorrow? Next week? Next month or year? No one knows. What will be happening in my life when the ping pong ball bounces back to the "deaf side?" Will I be in the middle of an important project? Someone's wedding? On vacation?

Going ahead with the cochlear implant is our best shot at giving me some stability when the hearing decides to go south again. We don't know how well I will do with it, but we know it will be better than hearing nothing at all.

My hope is that I surprise everyone with my guts, spunk and moxie and become a "superstar" of the CI world. The reality is probably much more boring than that, but I'll keep on hoping!

Until then, I have three weeks to wait, wonder and worry – and that is a whole other post!


Friday, March 22, 2013

I met a Hypocrite



The other day I stopped by Little Caeser's Pizza to pick up a Hot N Ready. As happens all too often these days, roaring tinnitus had me stuck to the couch most of the afternoon and by the time it subsided to a livable hum, it was way past time to make a healthy meal.

So pizza it was.

On my way in a woman passed me, obviously in a hurry.

Nicely coiffed and wearing what looked to be an expensive track suit, she didn't even acknowledge my presence as she pushed by me in an apparent effort to reach the door first. No "excuse me," no eye contact, no nod of the head as she raced (or so it seemed) to pick up her dinner.

As I stood in line behind her, I mentally sized her up. Rich? Probably. Arrogant? Yeah. Rude? Definitely.

She completed her transaction and turned to make her way out. But, with three pizzas, a two liter of soda and some crazy bread, it was clear she could not manage the door. I reached to open it for her and for a second her eyes met mine. "Thank you," she said. "I appreciate your help."

It was then that I noticed it. A slight droop to the right side of her face. A tired, slightly worn expression. Or was it my imagination?

Imagination or not, I was hit with the realization that I had made an assumption about her character without knowing her story. I had mistaken her hurry for rudeness and her lack of interaction for arrogance when it was probably something else. Did she have a sick loved one at home? Was she sick herself? Had she just lost her job? I'll never know, but I did know something - I was a hypocrite.

You see, I've been reading a book on hearing loss, smugly agreeing with the author as she shares the indignities often heaped on the hearing impaired.

In "Shouting Won't Help; Why I and 50 Million Other Americans Can't Hear You," Katherine Bouton deftly articulates the struggles of the hard of hearing in a hearing world. "Since I'm also very good at faking it, many people don't know I'm hearing impaired. Instead, they think I'm arrogant or remote, absentminded or distracted, drunk or just plain stupid," she writes of her own experiences.

Mmm hmm. I nodded. Someone gets it.

In a restaurant job long ago, I once got called out for being "stuck up." My social faux pas? As the others laughed and joked in the kitchen, I did my job, head down, hurriedly passing the others in an attempt to look busy. Truth is, I just couldn't hear them. I got branded as arrogant. Rude. Too good for the others.

So,when Bouton writes of missed punchlines and her own confusion, I do a mental high five. "Preach it, sister!" I practically shout. Her writing gives me a feeling of sisterhood, of specialness, of validation.

I know first hand what it's like to have your character maligned when all you really need is understanding – and when it's offered to me, I appreciate the extravagance of grace.

It was this grace I had neglected to extend to the Little Caeser's lady. The grace I crave for myself, I was unwilling to give.

If my pizza experience taught me anything, it's that I have a long way to go. We're all going through something, and if I'm honest, I know there are far worse things than being hearing impaired.

Cancer. Paralysis. Any number of incurable illnesses.

I am not special.

But, I do have a gift. Used correctly, my own shortcomings can offer me a window into the experiences of others. I can choose kindness. I can sympathize even when I don't know your story.

I can offer grace.

Maybe next time I'll get it right.

Tuesday, February 19, 2013

Dammed No More



I've been trying to be strong.

Looking forward to the new opportunities medical technology affords the hearing impaired, I've tried not to look at "what ifs." Tried not to look at loss.

If I don't look at it then I am normal. Nothing has changed. Except everything has changed.

"I can do all things through Christ who strengthens me." - Phillipians 4:13
"We gain strength and courage and confidence by each experience in which we really stop to look fear in the face. We must do that which we think we cannot." – Eleanor Roosevelt
"Just keep swimming, just keep swimming." - Dori

But then it happened.

Last Sunday night my middle children were watching Lord of the Rings in the living room. I was in the kitchen getting something to drink. I looked across the room and saw Gandalf. It was such a silly thing to breach the dam. But it did. And they came.

The tears.

Hot. Bitter. Stinging.

Sorrow. Regret. Selfishness.

Weakness.

All mixed together. And I was inconsolable.

It's crazy, but seeing his face without hearing his beautiful, deep voice was just so sad.

All of the things this disease has stolen from me came into view.

I thought of those movies – Gandalf's voice. Pounding Nazgul horses' hooves.  Armor being prepared for battle at Helm's Deep.

Then more.

Piano music.

Church sermons.

Birdsongs.

Wind.

My children's voices.

What if it never comes back? What if cochlear implants don't work for me? I have to face the reality that may be mine. I may never hear again.

And yet, I am still me. There IS still joy. I know because others have walked this journey before me and they tell me it is so.

Though the grasping may be difficult, it is not impossible.

So I wipe my face. 

Square my shoulders.

Face another day.

"Weeping may endure for the night, but joy comes in the morning." Psalm 30:5

Saturday, February 16, 2013

Emancipation




In the 15 years since I was diagnosed with Meniere's Disease we haven't learned much. And living in the shadow of a disorder that can, and does, strike without warning has been a bit stressful.

Because when it strikes, the instinct to search for the cause is overwhelming. What did I eat? What did I do? Did I not get enough sleep? Is it allergies? Is it stress? Is it a vitamin deficiency? On and on and on it goes -- your brain searches for an answer, because if you can find the answer, then you can make it better. But what if there is no answer?

At my first doctor's appointment with my new specialist at UNC, I heard something no doctor had ever said to me. He looked me straight in the eye and said, "there's nothing you can do about it." At first I was angry.

Because in the world of Meniere's we talk a lot about triggers.

A trigger is anything that causes or provokes an attack. Traditionally, salt, caffeine, alcohol and stress have all been labeled as triggers. Meniere's patients sometimes adhere to restrictive diets, with varying levels of success.

There are also a number of things that are purported to help. Taking antiviral medication, allergy shots, vitamin regimens and chiropractic care are all supposed to help suppress the disease.

But it doesn't work that way.

I belong to an online support group with nearly 2,000 members worldwide. This is a group of people who have more at stake in curing this disease than any doctor could ever have.

In the past two years I've noticed a trend.

People try something. It works. Their symptoms come back. Maybe months, maybe years, but they always come back.

So, my doctor was right and in a way, it's emancipating.

This will make some people angry – the way it made me angry the first time I heard it. "Nothing can be done."

But, I've stopped blaming myself. Stopped blaming my food. Stopped blaming my vitamins. Stopped blaming the stress. The caffeine. Whatever.

Because if a trigger is a trigger it's always a trigger.

That means if caffeine was going to throw my body into an episode, it would always throw my body into an episode.

If salt was the culprit, three years of pepperoni pizza would not suddenly turn into a problem.

No known cause. No known cure.

And I am breathing a sigh of relief

Now I am free to focus my energy on living as best I can with what I have now.

That's a good thing. Because learning to adapt as a hearing impaired person is going to take all the energy I can muster up.

Wednesday, February 13, 2013

A Half-Century of Coolness


My husband turns 50 today. It's a milestone usually celebrated amongst friends and family at a fabulous, larger-than-life party with all the accompaniments. Band? Check. Confetti? Check. Cheesy toast by childhood friends? Check, check, check.

A few months ago, I was brainstorming ways to celebrate the man who is so much more than my husband. He's my best friend. The father of my children. My rock.

I thought of taking him to California to reunite with old bandmates. I thought of making a really cool video to tell him – and the world – just how wonderful his life has been and how grateful I am that he was born a half a century ago. At the very least I wanted to take him out for a wonderfully expensive steak dinner.

Then life got in the way.

We began spending exorbitant amounts of time, money and energy on trying to make me well.

Which means we've exhausted the time, money and energy necessary for planning things like awesome 50th birthday bashes.

What do you do when the only gift you have is words? You write.

Steve, I know it's not enough. I want to take you to Tahiti and sit on a warm tropical beach. I want to buy you a convertible Thunderbird and drive through the Blue Ridge Mountains. I want to throw you the bash of all bashes.

I can't.

But, I can write for you.

So, in honor of the 50th anniversary of the day of your birth, here are the top 50 things I love about you in no particular order. Happy birthday, honey. I love you so much.

1.       You're a great dad. You change diapers, you date your daughters, you teach your sons how to love their mommy. Good job, man. You rock.
2.       Your hair. Yes, it's wiry and thinning, but it belongs to you. And that alone makes it worth loving.
3.       Your mad guitar playing skills. I remember the first time I heard you play. I thought you were Eddie Van Halen. Okay, so not really. But, I do love hearing you play. And someday soon, God willing, I will hear it again.
4.       The way you are when you're grumpy. It's kind of cute the way you get all red in the face or you do that sigh/grunt/mumble thing when you get irritated. It's sexy in an old man "get off my lawn" kind of way.
5.       Speaking of sexy, I love your kisses. They light up my world. Enough said.
6.       You're not a handyman and you admit it. I remember when we were dating and the latch on the door of my super old Volvo sedan got stuck. You walked out with a screwdriver determined to fix it and earn my love forever. Instead, I fixed it and you breathed a sigh of relief. You admitted to me later that you're more comfortable behind a computer than you are with a power saw. Kudos for honesty. Kudos for being you.
7.       The way you blush when I flirt with you. (Yes, dear adult children, we still flirt and you should hope to have one-tenth the passion for your spouse or future spouse as I have for your father. We may not be able to rock the dance floor anymore, but we sure can whisper sweet nothings!)
8.       You work hard. Somehow you've managed to juggle caring for a house, caring for the children and caring for me while holding down a full time job while I've been sick. I stand in awe.
9.       Your crackly toes. Yep, I said it. It's an inside joke between us that has now gone public. (Steve does not like to have his toes touched. So on those rare occasions when he actually has his feet up, I like to tease him by grabbing them. He says they're "crackly" and tries to pull them away from me. I laugh every time – because he's laughing.)
10.   Which means – I love your laugh. I'm grateful that out of all the things I CAN'T hear anymore, your laugh is one thing I CAN. I love the way you throw your head back and close your eyes when you laugh. Please laugh more. It's sweet medicine for my heart.
11.   You love it when I cook for you. You're not one of those people who doesn't notice the effort that goes into a truly good meal. You savor it. You enjoy good food. And you tell me you appreciate it. That feels so good.
12.   You totally rock a vacuum cleaner. You'd look sexy in an apron.
13.   You let me handle the grilling. I love a confident man.
14.   Your awesome scrambled eggs. The kids love yours more than they love mine. Who knew that throwing a bunch of eggs into a pan and stirring them around with the spatula was a better method than whipping them into a frenzy BEFORE they go into the pan?  Martha Stewart, eat your heart out.
15.   You don't hunt, fish or camp. Not that I have anything against hunting, fishing or camping, but I wouldn't have the foggiest idea what to do with a deer head and I love my mattress too much to sleep outside. Ewww.
16.   Your dry sense of humor and quick wit. Must have been honed watching all those Monty Python movies back in the day.
17.   You're not afraid to take chances. You married a woman with two little girls even though you didn't know anything about little girls. You changed careers mid-life and jumped in with both feet. You moved us 3,000 miles so we could have a better life. You revisited your pitching career at the age of 48. Yep, you're awesome.
18.   Family is everything to you. That's why the past few months have been so difficult. Between us we've lost three uncles and a cousin and it's been deeply painful. I'm so sorry that loss is a part of life, but grateful for the deep connection you feel to those you love.
19.   Your sons want to be just like you and your daughters adore you. What more could a mother ask for?
20.   You're good to animals. Heck, the dog thinks you're a god and you still get choked up at the end of Old Yeller.
21.   You love my best friend and you never begrudge my time with her.
22.   You love my best friend's kids and think they're a pretty cool bunch. (Which they are!)
23.   We both love coffee.
24.   And baseball.
25.   And the 49ers.
26.   And the beach.
27.   You were good to your mom. That's how I knew you'd make a good husband.
28.   You love good music and have turned me on to some seriously cool artists over the years. If not for you, I would never have heard Peter Case. How would my life have ever been complete without Honey Child?
29.   You don't golf.
30.   You don't mind that I'm not a great housekeeper. You just like things to be reasonably tidy and sanitary. (I'm trying to be better in this department. Thanks for not pointing out my flaws!)
31.   You're tall and because I'm short we make a pretty cute couple.
32.   You have a beautiful smile.
33.   You can do that play-the-harmonica-and-guitar-at-the-same-time-thing. Seriously. That's cool.
34.   Most of the time you're an early riser. Which is good, because so am I. How many sunrises have we watched together over the years?
35.   You remember to floss every single night. Now that's commitment.
36.   You support my endeavors. From homeschooling to freelancing to blogging you have cheered me on, even when the results were less than stellar.
37.   You text just to say you love me.
38.   Same with calling. When I can hear you, that is.
39.   You take me to all my doctor's appointments and remember to ask all the right questions.
40.   You remember my favorite magazine and buy it for me when I'm down.
41.   You always offer me the last bite or sip of whatever you're eating or drinking.
42.   You're quiet and strong, just like your dad.
43.   You're kind and sensitive, just like your mom.
44.   You're not materialistic and you appreciate the things you have.
45.   You love grey rainy days and I hate them. That means we balance each other perfectly.
46.   You still think I'm beautiful and you tell me every single day.
47.   You're consistent. I mean, there's comfort in knowing that no matter where we go for Mexican food, I can order for you if you happen to be in the bathroom when the waiter comes. Two chicken enchiladas with a cola.
48.   You play a mean game of Wiffle Ball.
49.   You give great hugs.
50.   And, the most important thing – you live out your faith in God in countless ways every day. Not just on Sundays. You have taught our children that loving God and loving others is the most important thing you could ever do. Buying food for a hungry homeless person, using your gifts to minister to others, praying over our children, our marriage and our community – those are the things I love most about you.


Happy birthday, Steve. I love you very much! Maybe someday we'll take that trip to Tahiti or buy that awesome convertible, but for now, I wish you every ounce of joy you deserve on your birthday. You rock!

Friday, February 8, 2013

What She Said


Hello, Dear Readers,

Not that I have many. J

This blog post marks a departure of sorts from the blogs I've written in the past. For now, I'll be focusing on a change in my life's journey instead of the meaning of my life. Here, those who wish to be updated on my journey may do so.

It's easier than clouding my Facebook page with my health issues.

So, here we go.

Ready?

I saw the audiologist yesterday, which, if you've followed my story at all, you know is no big deal. I see the audiologist more than some people get their hair cut. In the past six weeks alone, I've been evaluated at Duke and UNC probably seven times. In between, I saw another audiologist who ordered hearing aids based on the evaluations of the other two. I've been poked, prodded, sent through a tube to get a better picture of my head and been told "we still don't know what's wrong."

I've taken drugs that make me swell up, drugs that make me pee and drugs that make my heart race.

Why?

I've been deaf in my left ear from birth, near as we can tell. It is possible I lost it sometime after that, but we'll never know. I was four when it was discovered.

But, in middle school I started experiencing periodic episodes of fullness, tinnitus and temporary hearing loss in my right ear. They were few and far between – literally years passed between them. I was blissfully unaware of the true nature of my condition. No one knew what it was, but no one seemed concerned. From beginning to end, each episode lasted about five days.

In 1998, shortly after I married the love of my life, I had a bout with this mystery illness. I saw a neurotologist who finally gave it a name: Meniere's Disease.

The condition is idiopathic, meaning no known cause, no known cure. But, I was fortunate. I was diagnosed with what's called cochlear hydrops or atypical Meniere's. No vertigo. Yay.

But then this from the Mayo Clinic: Hearing loss in Meniere's disease may fluctuate, particularly early in the course of the disease. Eventually, most people experience some degree of permanent hearing loss.

The word "progressive" kept floating around. I heard a lot of doctors say "don't worry, when you lose your hearing we can always do a cochlear implant."

Wait. What?

Fast forward 15 years.

Two years ago I had an acute episode of what we were still calling Meniere's Disease.  It lasted six weeks and took some of my hearing with it.

Since beating it back into remission that May, I began experiencing episodes more frequently and for longer periods of time. Tinnitus became my constant unwanted guest. Sometimes my hearing would be unstable, changing from day to day for no apparent reason. But I still had more good days than bad days.

Then came November.

In November, the fluctuations got worse. Good day. Bad day. Two good days. Three bad days. Up and down it went.

Predisone stopped working. Dex injections in my eardrum stopped working. Hearing aids were no longer an option.

What now?

No more good days.

Steve talked me into going back to UNC for one more hearing test. I can't hear my son. I can't hear my phone. I can't hear music.

Under protest I went.

No more tests. No more drugs. No more blank stares at the numbers on a computer screen.

Then the results.

"You're deaf," she said.

"I can hear you," I said.

"You hear because you're looking at me. You aren't really hearing me, you're reading my lips and your brain is filling in the rest.

You're guessing."

She was right.

When she turned away from me I couldn't understand a single word. It was like she was speaking a foreign language.

She showed me the paper with my test results.

"Qualifies for cochlear implants in both ears."

I meet with the doctor in about three weeks. Until then, I've been given a hideously large hearing aid that amplifies sound to unbearable levels. A jet engine for you. A normal conversation for me.

And I wait.

And I pray.

It's a shift in thinking. I have faith that everything will be okay.

Of course it will be okay, they've always told me it would be when the time came, right?

Thursday, February 7, 2013

Cilia's Ending




The photo above is of the tiny hairs responsible for transporting sound in the inner ear. They are called cilia. I've written a poem in honor of mine -- which are dying. My poetry muscles are a little weak because they haven't been exercised in quite a while. Forgive my self-indulgence.

There is no rain
There is no wind
No joyful laughter
No clock begins

To stir my mind
Or wake from sleep
Anxious thoughts
"My soul to keep."

And yet,
The squeal
The cackle
And the shriek
But music still is out of reach.

I wait for answers
Still none come
I wait for comfort
Still I'm alone

No tears
Nor grief
No time for pain
I stumble and rise up again.