No Mind Over Matter

 A friend texted me this week: What is going on with YOU?

Oh, lots.  Lots & lots & lots.

And this makes it all the more challenging to share.

Instead of one simple explanation for this week, several experiences have arisen, each one critical in my quest to find clarity, both in sound and in life.

The events of this week are filed into a multitude of categories, with headings such as T-Ball Coaching is No Joke, Hearing is Hard, My Dreams Are Coming True, and I Hate My Life.

Last weekend I overheard Jeff telling someone that living with me is like being on a constant roller coaster ride.  Was I offended?  Not in the least... he's 100% accurate.  And this week another loopy segment was added to the track.  We're still on the ride, still hanging on.

Let's start with Monday when I traveled to Albany.

It was a remapping appointment with my audiologist and I was feeling optimistic.  At the last mapping, one of the 24 electrodes in the implant had been turned off.  We were on to something; the clarity improved so greatly (Remember me hearing the geese?  Pretending I was Norah Jones, singing in bathroom?)  Then without warning, eight days later my comprehension seemed to drop.  A part of me believed my brain had acclimated so fast to the new program that it was all the more ready for some additional advanced mapping, a chance to be even clearer than before. 

As I said to Dr. Sharon, "I'll stay as long as it takes.  I'm in it to win it."

She smiled kindly, but also acknowledged I typically grow fatigued after more than an hour of testing and mapping.   Sadly, this observation (damn it) is the truth.

It's funny because I'm just sitting there, but mapping is exhausting.  Trying to pinpoint which beeps are fuzzy or quieter than the others, trying to find the right descriptors to explain the quality of sound, trying to comprehend... there comes a point when my brain withdraws and closes shop for the day.  It's not a "mind over matter" mission either, like when you're out for a run and you're exhausted, but still manage to convince your legs to run a final lap.

This IS my mind.  When it shuts its door, there's little I can do but take a rest and wait, and let's be honest: I'm not good at that.

Additionally, Monday's mapping began on a sour note.  We started discussing telecoils, and soon we were experimenting with cell phones.  Then I grew frustrated not being able to hear on the phone and minutes into the appointment, I'm taking deep breaths so I don't start bawling in the office.

Once I put a stop to the telecoiling, we got to mapping, once again abandoning the modern day procedure (where electrodes are adjusted globally and all fall into their places) and instead, we tested electrodes one by one, testing my comfort level with each and every beep.

Dr. Sharon opted to try this because in many instances I "feel" sound as opposed to "hearing" it.  It's not pleasant.  It can best be described as a flick or a quick zap to my head around the implanted area, especially when the noise presented is high pitched or especially loud.

By the end of the test, Sharon suggested we try turning more electrodes off, this time a total of four.

When the new program was turned back on, my first reaction was that my cochlear ear seemed to be taking over in comprehending, a positive considering I still so heavily rely on my hearing impaired ear.  And while Sharon's voice was still mostly robotic, there was just a hint of human there letting me know she was female.

This might sound funny to those who hear, but even a year in, I still can't differentiate between male and female voices with just my CI ear.  So I felt we were on to something.

But in this roller coaster ride, the results did not transfer over into the real world.   After leaving the office, I noticed a constant presence of background noise, a crackle of sorts, even in complete silence.  Later, with the implant off, the noise stayed in my brain.  Tinnitus was back, this time presenting itself as whimpering puppy.  All.  night.  long.  

Plus I had noticed I couldn't understand my kids.   I couldn't understand my t-ball players.

The next day, I sat straining during a meeting.  After sixty minutes, fatigue smacked me in the face like never before.

I could feel it.  I was going to cry.  I tried my best to avoid eye contact with everyone at the table, to go inside my head and mentally remove myself from the conversation.  I had to stop trying to comprehend or I would shut down.

After the meeting, I needed a half hour sitting on a park bench staring at tulips in order to recover.

Not a bad view, though a rather conflicting image considering by not-so-cheerful disposition

Later, I tried to bounce back. I had to make it work.  I tried rehabilitation exercises, listening to a carpet cleaning radio ad over and over and over again and not making out the words.

There was nothing I could do about it-- no "mind over matter self-talk" that would make it any better.

And it pissed me off. 

I'm an emotional person, but not necessarily an angry one, and certainly not a violent one.  In fact, a friend once tried to take a photo of me where I used my best "mean face" or "tough face." The results were laughable.

But this time was different.  My teeth were clenching, my insides trembling.  I wanted to throw something.  Break something. Yell at no one in particular using the most profane sentences I could conceptualize.

Lord, I am TIRED.  SICK of the hope, the disappointment, the optimism, the depression.

Get me off the ride.  I am done.

Except, I'm not.  I have my family, my work, my future.

And so, by the grace of God, I keep picking myself up and starting again.

And as crazy-busy as my life can be, it's my overcrowded mental file cabinet that keeps me going.  The fact that I could sit and cry, but can't...  I have a t-ball game.  Or when I feel like punching the wall, and throwing things, but can't... someone, somewhere is acknowledging me for my work.

All life is a roller coaster.  Mine just happens to be a particularly long and bumpy ride.

But I'm still holding on, looking ahead, knowing one day I'll come to a stop.  Hopefully then, I'll wipe the tears from my eyes, and look appreciatively at those who shared the ride with me.  I hope we laugh.

Colin Turns 9

Baby Colin

Nine years ago, I became a Mom.

This concept overall should have scared the crap out of me, but it never did.  I admit I was nervous about becoming a hearing impaired mom, but what brought me even greater anxiety was the possibility of my baby being hearing impaired too.

At 22 years old, I lacked understanding of the real world, and I was greatly unsure of my life.  I was also deeply ashamed of who I was.  I couldn't speak of my hearing without my eyes welling with tears, and if someone else was to speak of my situation, or even ask me a question about it, I felt violated, embarrassed, and buried in self-consciousness.  I also felt guilty for my feelings, because I knew, intellectually, that my hearing impairment was not that big of a deal. Still I couldn't shake my damn emotions, and so I marched into parenthood wrapped in denial, hoping for the best, but deeply worried for the worst.

I think I've always known that at some point or another, I was going to have to accept the life God had given me.  I also believed- and still believe- that my circumstances are no accident, but this didn't necessarily make me feel better about not being able to understand people.  Still, as angry as I could be with my ears, I've always believed I was made this way for a reason.

Now I'm warning you: This might sound crazy.  But I feared God would punish me for my lack of acceptance.  I feared my baby would be born hearing impaired or deaf.

Throughout my pregnancy with Colin, and even three years later in my pregnancy with Claire, I reasoned there was only one way TO FORCE me to accept my life.  I knew I wouldn't be able to help my child develop confidence if I could not be confident in myself.  And so I assumed I would be forced to tackle my truth by having a hearing impaired child. The presumption of this challenge was so monumental to me that it terrified me to my core. 

At 10:43 AM on January 19, 2004, my beautiful baby boy, Colin, was born.  He was absolutely perfect,  and through the afternoon into the evening, my fears melted away... temporarily. 

Jeff had gone home for the night to get some rest, and through middle-of-the-night darkness, a nurse entered my room to let me know Colin was going to be taken to the nursery for tests.  Included was his infant hearing screening, and my chest tensed in anxiety.  The nurse told me to just sleep, but despite the exhaustion that comes with labor, hospital visitors, and new motherhood, I was wide awake.  I told the nurse I needed to know the results of the hearing test immediately.  She was adamant I needed my rest, but agreed she would slip a note under my door letting me know the results.

She told me not to worry, and to get some sleep.  Yeah right.

I stayed awake, my eyes glued to the clock watching each excruciating early morning minute pass by.  Occasionally I would tiptoe to the door of my room (I felt like I was being defiant in rejecting rest, not realizing yet my role as a parent and my right to be with my child).  So I would sneakily pace my way to the door in hopes of getting the results sooner, only to feel like I was being foolish and would anxiously return to my bed moments later.  This went on for what seemed like forever until finally a sliver of light entered the room as the door cracked open.

When I got to the door, THIS note was on the floor:

CONNOR?!  WHO THE HELL IS CONNOR?

I had spent most of the night worrying about this very moment, so I no longer cared if I wasn't following nurse's orders.  I marched to the nursery, the note in hand.  When I found Nurse Kim, she assured me she had mistakenly written "Connor," and that indeed, Colin had passed his screening with flying colors.  He was continuing his tests and doing just fine.

And then, finally, I rested.  Next thing I knew, nine years flew before my eyes.

As the years went on, I am happy to report Colin continues to pass his hearing tests.  We were skeptical during grades 1 and 2, but alas, he achieved a perfect score with the audiologist.  It seems Colin has a combination of selective hearing and a case of "Fisher Fog," otherwise known as a genetic condition where Fisher males seem to be looking through you as you speak to them.  Colin acquired one of the worst cases.

He's also a wonderful kid: witty, passionate, creative, philosophical, athletic, and wise beyond his years.  And now he's nine-- the same age I was when I learned of my crazy hearing.

I'm no longer worried Colin will be hearing impaired, but should it happen, I know I'm a hell of a lot more equipped to support him than I would have been when he entered this world.

Today I can say, I am who I am... and I'm okay.  But I'm not just saying it; I believe it.  And I hope my kids can see that no matter what, they'll be okay too.

Claire, me, and Colin