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.

The Bright Side

I like to think I am an optimist… that I try to see the good in even the bleakest of situations.  However, when I’m in a Dayquil-fueled fog accompanied by head-buzzing misery, I struggle to see the bright side.

Prior to Thanksgiving, I caught the dreaded stomach bug.   A week later I replaced my condition with a never-ending sore throat and sinus headache.  I’ve had two colds since my surgery, and both times, it seems my cochlear implant’s functionality is compromised during cold and flu season.  For me, a simple cold now coexists with head pressure surrounding my implant site, and more annoyingly, a constant buzzing that remains ringing through my head regardless of whether I am wearing the processor or not.  That’s right; even when the implant is OFF, I still hear noise—a condition common to people with cochlear implants known as tinnitus, also known as “ringing of the ears.”  Some people have this without being hearing impaired or having an implant, and it’s my understanding that deaf or not, it sucks for everyone. 

Additionally, certain noises seem to be even more obnoxious than normal when I’m sick.  Head-buzzing is one of them.  Another is the high pitch squeal of Claire’s screams when she plays with her brother.  This has always annoyed Jeff, but pre-surgery, I was oblivious to its occurrence.  Well, I hear it now and OH. MY. GOD.  Little girl screams are the WORST. 

As you can probably tell, I’ve been grumpy, and though I should probably focus on my blessings during this most-wonderful-time-of-the-year, I admit I haven’t been feeling very thankful.  I thrive to hear voices, after all… clearly and effortlessly; I didn’t get this surgery to hear squeals and buzzes.  And so, I’ve spent the last few weeks pretty pissed off toward my cochlear implant progress.

Today, however, and in more ways than one, I was lucky to see some light.  It appeared during an all-day training held in a large, hotel banquet room.  The majority of the training was lecture-style, and the speaker was great—charismatic, interesting, and to my luck, he spoke loudly and clearly.  Even better, I realized I didn’t have to work to understand him… that is, until I slid my processor magnet off my head to see what he would sound like without the implant.

He wasn’t clear.  And he wasn’t loud.  I had no clue what he was saying.

It would be a disservice to the implant not to acknowledge its value to me when I’m attending presentations and lectures.  In that setting, and with the right speaker, it is working.  Upon realizing this, the room brightened.

The training, incidentally, focused on cultural diversity and social identities, and considering my 23 years of experience with a disability, I felt I could contribute to the discussion.  After sharing some of my story with the participants, one woman added that when she first heard my voice, she wanted to know “where my unique accent was from.”

There it was—the reaction to my speech that I try to make sound as normal as possible.  Sometimes I get the “Where-are-you-from question,” and other times, and especially from kids, I get the frank “You-talk-funny” statement.  On occasion I’m asked if I have my tongue pierced.

Then there’s my favorite-- when a daycare parent once looked at me inquisitively while I spoke and then commented, “You’re so exotic.  Where are you from?” 

To which I replied, “New Jersey.”

If ten years ago, a colleague had pointed out I talked differently in front of 50+ professionals, I most certainly would have been embarrassed.  I might have cried.  And I definitely would have wanted to wring that lady’s neck for spotlighting the fact that I was different.

Today, however, there was no bitterness.  I realized she wasn’t trying to hurt my feelings, but that she was curious—that’s all.  Just. Curious.  What a difference from a decade ago…  Hell, even a year ago!  My progress in self-acceptance continues to surprise me and truly brighten my days. 

I realized today that the bright side is there, but it is my choice whether or not to let the light in.  Moreso, when the journey seems foggy and dark, it is up to me to remember those moments of brightness.  During the 2012 holiday season, my first Christmas with the implant, I choose for my days to be merry and bright.   I wish the same for all of you.

Beware: I'm back.

Moving forward during my recent family vacation.

I have just returned from vacation.  Hours ago, I arrived to my home after a week at the beach with my family.  That was one vacation.  The other break, I realize, is the one I’ve allowed myself from the blog.  I feel like I’ve had a lot to say, but sometimes when there is so much going on, it is difficult to focus on a single topic.  Instead, I’ve kept my feelings to myself, a decision that has probably stifled my healing as I come to terms with life with the cochlear implant. 

Much has happened since I’ve last written.  I’m now a contributing writer for two business newspapers and loving it.  I’ve also started another job, working three days a week as a community outreach coordinator for a nonprofit organization.  The professional opportunities that have come following my surgery not only allow me to do what I love,  but I also have much more flexibility than ever before, enabling a greater balance between family and work.  Life should be good, and often, I’m stubborn and don’t want to admit that life isn’t as great as I thought it would be at this point post-surgery.  My hearing should be improving day by day, little by little. 

The truth: I don’t see much improvement, and I’m disappointed by my inability to provide a happy ending to my journey.    

I had a week or so when my optimism was growing.  A few friends told me they noticed a difference in interacting with me.  I felt as though I was getting closer to my goal of understanding noises around me, even if I was slowly crawling to get there.

I’m not sure what has changed in the last three weeks or so, but I feel like a failure.  I’ve met with the audiologist, and she knows my concerns.  I can hear the sounds, but I still can’t make sense of them.

This past week, my family rented a condo in Ocean City, Maryland with my husband’s siblings and parents; at most, we had a total of fifteen people in the house at one time. This vacation had been planned for months, so I knew prior to surgery that two months after, I’d be at the beach.  With so many recipients telling me that they had seen such drastic improvements in three weeks to a month to two months, I was certain this vacation would be amazing. 

All my life, I had struggled at the beach.  While the ocean breeze and the waves crashing is relaxing background noise for most people, for me it was always the only noise I could hear, masking the speech of those around me and prohibiting me from participating in casual conversation unless I gave my utmost concentration, which of course, I always did, leaving me exhausted and completely un-relaxed.

I had envisioned this vacation at the beach to be different—easy and breezy, for once in my life not having to think about hearing. 

Unfortunately, I knew on the first day that I was overwhelmed with all the voices under one roof.  I would turn down the volume but it was still loud, and the cacophony of noise remained chaotic and unclear.  Hearing-wise, it wasn’t what I had hoped, but also comfort-wise, I was having difficulty.  We were fortunate to have beautiful beach weather, but it was HOT, and the processor sat on my sweaty head uncomfortably, leaving me itchy and annoyed, and since I’m unable to get the processor wet, I had to be particularly careful around water.  Additionally, my ability to put my hair up in a casual beachy ponytail was not so easy; besides worrying about my physique in a bathing suit, I felt insecure about the mini-computer connected to my head.  Not exactly the summer look I was going for.

Bitter emotions bottled up inside me until Day 3 of the vacation when midday I started to feel sick.  My stomach hurt and my head ached, and I excused myself to lie down in my dark, air-conditioned bedroom.  Jeff came to check on me, questioning if I had “too much sun.”  I realized my body was responding to the bitterness I’d been holding in. 

Quietly, I admitted what I had been thinking for awhile: “I shouldn’t have got the surgery.”  There.  I had said it.

Jeff rubbed my back for a minute as I drifted to sleep, actually feeling relieved that I had finally vocalized my fleeting thought, hoping that it would now go away, allowing gratitude and perseverance to guide my thinking from that point forward. 

After the declaration to Jeff, I  was able to enjoy the trip, even with my crappy hearing and the itchy processor.  I decided not to focus on it, and just do the best I can.  Most of the time, that meant avoiding conversations and just relaxing on my own—not such a terrible thing at the beach.  And sometimes, I didn’t wear the processor at all (I know fellow recipients and my audiologist will not agree with that move, but briefly, ON VACATION, I wanted to forget it existed).  Temporarily, I coped.

Breaking Bad Habits: My First Mapping

A mother and son plagued by bad habits

Yesterday marked another cochlear implant milestone: the first mapping appointment.  This appointment is designed to “fine tune” the device so that I have the volume, clarity, and programs that I need to successfully hear.  I was so ready.  After my horrific activation, and the very challenging, chaotic and LOUD ten days that followed, I was very excited for this day.  It just had to get better.  It had to.

I will share the experience with you, but first a story.  (I promise there is relevance.)

My eight year old, Colin, has been making some interesting behavioral choices lately.  One of the repeat behaviors is his perpetual need to talk over adults when they are speaking, both at home and also at school.  I’m sure he is excited to share his views of the world with his teacher and classmates (he’s always been conversational and philosophical) but still, we all learn at some point or another to SHUT UP.

Each time he gets in trouble, he has a plethora of excuses as to why his choice of action made logical sense.  His most recent explanation included an indifferent shrug of the shoulders and the phrase, “I can’t help it.  It’s my habit.”   Wonderful.

Regardless of punishments or lost privileges that occur because of Colin’s so-called “habits,” it doesn’t seem to sink in when he is wrong.  Unfortunately, a simple “Don’t do that” means nothing to him.  He is a tricky breed, and to teach him lessons, I have to match his sneaky cleverness.

So I decided to tell him about a habit I used to have.  Throughout elementary, middle, and high school, I DREADED the required mile runs.  HATED THEM.  And I would tell people- and myself- that I was not a runner.   I explained to Colin how I used to not be able to breathe after one lap, how I used to tell the teacher I was hyperventilating... I just thought those runs (and physical education, in general for that matter) was cruel punishment for a song-and-dance child like myself. 

“But Mom,” Colin said, “You probably could have done it.  You’ve run thirteen miles.  You probably could have done one.”

Yes, it’s true: Fast forward to adulthood, and the girl who couldn’t run a mile, who would have done ANYTHING to be excused from the physical fitness test, actually cheerfully trained for a half marathon a few years back and completed it.  I’ve continued running- and liking it- ever since.

“The point is,” I said to Colin, “Before running the mile, I would tell myself that I wasn’t going to be able to do it, that I wasn’t athletic, that I wasn’t going to be able to breathe. My habit was that I told myself I was not able to run. But I eventually changed my habit.”

He stared at me in his kind of spacey, but maybe pensive way, and I hoped he was my absorbing some nugget of wisdom from my little parable.  Interestingly, I didn’t allow my own lesson to sink in until a few hours later as I was thinking about the day’s events.

A few hours earlier, I was sitting in my audiologist’s office, my implant hooked up to her laptop during a hearing test.  As she prepared, I told her about the challenges since activation.  I explained that I was not able to hear the oven timer or phone when standing right next to them.  I told her how at a party, I was able to identify the pattern of my son’s footsteps as he rode a scooter several yards away, but that I wasn’t able to hear the person talking right next to me.  I told her about the headaches, the tinnitus I developed (SUPER ANNOYING ringing of the ears), and how the world since activation was just a constant hum and squeal of noises that made zero sense whatsoever.

The hearing test began.  As the beeps changed frequencies and volumes, I still heard them.  At times I thought I was imagining noises, but the audiologist assured me that I was accurately hearing the sounds.  In fact, there was one beep that made me wince. 

“That was one of the three highest frequencies in the test,” said the audiologist.  “You’ve probably never heard that before.”

In any case, I did really well.  And the test was really important; it indicated that my implant was using 30 levels of power above what I needed.  The audiologist explained that often, recipients progress to 5 levels above after activation, but at 30, I was receiving WAY TOO MUCH input and volume to the point it was confusing and uncomfortable.

Dr. Sharon made adjustments.  Incidentally, I called Dr. Sharon “Susan” in a previous post, and was even addressing emails to her this way.  So embarrassing.  I really should know her name since my life pretty much depends on her!  Anyway, Dr. SHARON  started speaking to me and immediately, the volume was tolerable.  She sounded a bit robotic, but not too bad.  It sounded like speech at least!  I was still looking at her as she spoke to me and had no trouble understanding her.  She told me she was going to say the days of the week to me and I should repeat them.  She then put a large black circle in front of her mouth so I couldn’t see her lips. 

She began, “Thursday.  Thursday.  Monday.  Monday.  Wednesday.  Wednesday.  October.  October.”  Dr. Sharon was trying to trick me, but I still repeated all words correctly.

She then asked me a series of questions, her lips still shielded by the circle.

“How many children do you have?”  Two.

“What are their names?”  Colin and Claire.

“Where do you work?”  SUNY Adirondack.

“What color is Claire’s hair?”  I couldn’t get that one.  She went on to explain that it’s harder to understand sentences when a lot of the same sounds present themselves. 

“Of all of those, Pam, you missed just one!” Dr. Sharon exclaimed. 

“I know,” I started, “but you gave me context with the days of the week.”

“But you got October,” Dr. Sharon responded.

“Yes,” I went on, “but that’s a three syllable word and those are easier to identify than one syllable words.”

Eventually, Dr. Sharon interrupted my excuses to give me some advice.

“To make this work,” she said, “You have to trust yourself.”

She then told me a story of another patient who continuously excelled at her hearing tests, but still claimed she could not hear in “the real world.”  The woman was knitting in a chair one day and the television was on in the background.  As the woman stitched, she realized that she had been following the plot of the television program without ever looking at the screen.  The implant was, in fact, working!

I sat on my porch yesterday waiting for my mother-in-law to drop off Colin and Claire after school.  I heard the people across the street talking to one another.  I heard the cars driving by.  And then I heard some other sound I couldn’t identify—birds, maybe?  I was skeptical, though.  When have I ever heard birds?

“How’d you make out?” my mother-in-law asked as she approached the porch. 

“Really good,” I said, and then I paused suddenly.  “I might be imagining this but am I hearing birds?”

As robins flew overhead, my mother-in-law assured me that birds were singing- very softly, but they were definitely singing.

For as long as I can remember, I have told myself I can’t hear.  For years, I have avoided circumstances that relied strictly on my listening capabilities.  Many times, I wouldn’t even try to listen, certain that it was hopeless and I would fail.  I have continuously reminded myself that I am incapable- just like I was not a runner, and just like Colin can not keep quiet in class.  I guess even with the surgery, I haven’t quite broke free from my habit.  Once again I’m reminded to push my fears aside, work hard, and above all, TRUST that I can be the hearing person I’ve always wanted to be.