Kindergarten Critics

Me and Claire-December 2012.

“Look at my mom’s COCH-LE-AR IMPLANT!” chimed my daughter Claire as she reached to the right side of my head.  Surrounded by her friends, she was trying to brush my hair away to reveal the sound processor behind my ear.

We were in Claire’s kindergarten classroom where I had just finished volunteering.  Forty five minutes earlier, I had sat in front of 25 little faces, their bodies seated criss-cross applesauce on a colorful carpet.  Before opening my storybook, I explained I first needed to tell them something.

I had trouble looking at the teacher or the teacher’s assistant as I began my speech, completely aware I was avoiding eye contact with them.  Maybe because if I had looked, I would catch a glimmer of sympathy in their eyes, or even a silent small smile-- the “I know this is hard, disabled one, but good for you” acknowledgement that would leave me off-balance and overly emotional because they knew the truth. 

It was hard giving this speech. 

I was scared a group of five year olds would somehow lessen their respect for me if they knew of my truth.   And despite a brave front, I questioned if Claire, seated smack in the middle of the group, would feel any wave of embarrassment, sadness, or shame that her mother was different. 

“I have something special about me,” I began.  “I used to have trouble hearing so in the spring, I got a surgery to help me hear better.  It’s called a cochlear implant.”

I then lifted my hair to show them the processor. “I’m still trying to learn to hear, and there are some things you can do to help me, like speak loud and clearly, and to raise your hands before you speak.”

Right away, several of the kids’ hands popped up. 

“And LOOK at you while we’re talking,” chimed in a little pony-tailed angel in the front row. 

“And take turns speaking,” added the second child I called on.

“Wow!  You guys are smart!” I commended, and I meant it, though I admit that initially, I didn’t give these kids the credit they deserved. 

Later, when I spoke with Claire about the day, I asked her if there was a hearing impaired child in her class, figuring someone at some point must have gone over communication strategies with the kids.  But Claire assured me she knew of no child who wore a hearing aid (or a big earring as she called it). 

She didn’t offer much of an explanation, simply stating, “Even the kids who normally misbehave looked right at you, Mommy.  I guess they must have liked you.”

Here were kids, some unable to write their own names or tie their shoes, and yet they knew how to communicate with me better than many adults.  There was no unnecessary increase of volume in their voices.  No E-NUN-CU-AT-ING EACH SLOOOOOW AND PAIN-FUL SYLL-A-BLE to make sure the deaf lady understood.  Within 30 seconds, it seemed the kids made sense of the situation, offered some suggestions so that we’d better understand one another, and that was that.  After my speech, I glanced at Claire, wondering if she would smile in my direction or give a small nod of approval.  There was none of that, either.  Her face carried the same expression as if I had told her the weather condition outside-- an expression that says, “That’s nice, so what are we going to do next?”

The volunteering continued, and after a story, some crayons, and a snack of the Dunkin Donut munchkins I had brought just to make sure I could win the kids over (totally worked, by the way), the class lined up for lunch and I decided to walk down the hallway with them as I left the school.  It was then that my daughter looked up at me and smiled, and while most of the kids were too preoccupied to hear her, I did.

In her signature high pitch singsong voice, she exclaimed, “Look at my mom’s COCH-LE-AR IMPLANT!”

And you know what I realized?  She’s proud of me. 

After years of worrying that my situation would somehow embarrass my kids, Claire looks at my cochlear implant as some kind of badge of honor.  In fact, sometimes when I’m not wearing the processor, I catch her by my bedside table, placing the processor behind her right ear and then looking in the mirror, cocking her head from one side to the other as if she’s trying on a headband or experimenting with eye shadow.

In moments like that, my heart smiles… and heals.  And when she decided to show me off to her friends, well… my heart just swelled with enormous gratitude that I get to be this little girl’s mother. 

Because of Claire, I am learning to wear my “big earring” with pride.

Applauding Small Victories

It’s been about two weeks since I wrote what I’ve come to refer to as “Pam’s Pity Party Post,” a hearing impaired bitch-fest, if you will, regarding my frustrations adjusting to life with a cochlear implant.  Venting over the Internet proved to be very cathartic (Thank you, Readers, for waiting politely as I revitalized myself with a good, old-fashioned temper tantrum).  Once I let go of some of my frustrations and anger, I am happy to report good moments returned to my life.

As my Facebook friends might have seen, I recently posted a status that yielded nearly 100 likes (Thanks, Facebook Friends).  In an abbreviated version of the following story, I wrote how my children, Colin and Claire, had their first piano lesson.  The lesson took place in an old music hall,  and I watched with joy as the kids happily familiarized themselves with the keys and notes of a beautiful, restored 1904 piano.  I think I was so pleased that they were so enthusiastically engaged in the lesson that it took me a few minutes to be conscious of my hearing powers.  As Claire’s fingers slowly paced up the keyboard, I realized I didn’t stop hearing once she got to the upper third of the keys.  In the past, I’ve had enough musical knowledge to “know” what note comes next on the scale, and to be able to hear it in my head, even if I can’t sing it.  (And trust me- when it comes to a high note, I CAN’T sing it.)  In the past, I was also accustomed to hearing the “tap” of pressing down a piano key (think of pressing a key on an electronic keyboard when the keyboard isn’t on).  But this time, I realized, I was hearing actual tones—crisp, clear, non-robotic, and in fact, pretty tones reaching higher and higher in frequency.  Once I realized what I was hearing, I informed the kids’ music teacher that I was new to the high notes, and he allowed me to prolong my moment by pressing some  more keys and even letting me experience the cymbals of a drum.  When presented one by one, I experienced each unique tone like never before.    It was a victory… a small success that my cochlear implant could happily surprise me after a long cycle of frustration.   I was grateful.

Gratitude is a wonderful feeling, but sadly, it can be so short-lived once positive thinking is removed.  After posting my tale on Facebook, I experienced a mild “Oh, how nice” kind of feeling that I had so much support, but there was a part of me that felt as though I was lying.  Sure, hearing the upper register on a piano was new and exciting in the moment,  but that’s not what I wanted from this surgery.  It didn't make me successful.  When I go out with friends, or participate in a meeting, I’m not interacting with a high G note, after all.

Speaking of interaction, however, I DID have a good CI outing on a Saturday with my husband Jeff.  We were at a local restaurant, seated at an outdoor table while a very talented acoustic singer performed near our table.  Pre-surgery, I would have loved listening to the music; unfortunately, that is all I would have been able to listen to, as the background noise of vocals and guitar would have surely dominated over any conversation at the table.  The way I was hearing was different that evening, and by playing with my CI settings and volumes, I was able to come to a comfortable place where yes, the music was there, but so was Jeff.  We could talk.  I was still looking at him, and I was still focused, but we could do it.  Another thankful day, another small victory.

A week after, a group of friends and I returned to the same restaurant for a girls’ night out.  Once again, outdoor seating, and once again, an outdoor performance, although this time it was a band.  I had even suggested the spot because of my previous weekend’s success, boasting to my friends that I would be able to hear them!  And I could… sort of. 

Dealing with four different female voices proved to be a challenge; though one setting might be ideal for Tara, the volume wouldn’t be right for Michelle.  Though the sensitivity level would be perfect for Carrie, somehow I kept thinking Kim said “cranberry” when she was really saying “grape.” (I know... Not even CLOSE). With more noise surrounding me, there was so much more to consider, and the ability to hear all sounds harmoniously presented quite a challenge.  It was certainly not the same as a single note, or one familiar voice.  My brain struggled to keep up.

My optimistic self tells me this is to be expected, and little by little, my brain will allow more complicated noise to be deciphered.  After all, I didn’t initially hear the blinker in my car, or the beep when the microwave turns off (I’m still startled every time it beeps, by the way).  On most days, these small collection of sounds have become a “new normal," an experience I would have never had before.  Still, my regular, perfectionist, impatient self typically ignores those moments and instead wonders why this whole confusing process has to be so damn annoying.

I TRY to remind myself that not every victory has to be the result of some complex, Olympian task.... I really do.  Still, I struggle with Pam’s perfect expectations, not just when dealing with my CI, but when dealing with life, in general.  Take my to-do list, for example.  Too often I won’t finish it.   I might get around to finally folding the laundry (a small victory in itself), but instead, I’ll brood over how I failed to weed my front yard, failed to make dentist appointments, failed to email my friend, failed, failed, FAILED.  Even when I heard the high notes on the piano- quite possibly the first time I had EVER heard those notes- my gratitude quickly faded when I turned my focus to how much I was still missing in conversation, how difficult it was to talk on the phone…  Failure, failure, FAILURE. 

Please remind me during my next pity party to applaud the victories, big or small, to remember the beauty of a single high G note, and to smile and say THANK YOU.  Being grateful just feels better.   

Now what small victory are YOU grateful for today?

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.

The Approaching Activation

So my activation is tomorrow.  Wow.

It was not supposed to happen so soon, but I figured it wouldn't hurt to inquire about an early activation.  My assertiveness paid off.

Let me back up and discuss the post-operation period a bit.  When I went for my follow up appointment yesterday, I questioned if I was healing as expected.  I was caught off guard by an uncomfortable period in my recovery, and I was baffled that my discomfort was growing worse instead of better.

Several days following my operation,  my cochlear implant optimism really started to wane.   Up until that point, I had made it through the annoying and difficult-to-eat phases of Days 1 and 2.  I was fatigued, certainly, but I gave myself permission to ignore the housework and sleep as needed in my very comfortable bed.  Jeff had also voluntarily moved himself to the couch for a few days; though deaf on the right side, my left ear-sadly- can not escape Jeff snoring.   In a way, my recovery was becoming a mini-vacation, with tropical daquiris and views of the beach being replaced by Tylenol with codeine tablets and Bravo reality shows.  This whole surgery thing wasn’t so bad!

Jeff's reaction when I sent him the picture of Pammy Pumpkinhead?

  "AHHH!"

But then Day 3 hit.  The right side of my head had remained pretty numb up until this point, but as sensation started to return, I grew more uncomfortable.  Not only that, but the right side of my head started to expand.  It started to feel like my head wasn’t stretchy enough to hold all the puffiness, and it resulted in this throbbing pressure, and an outward appearance of what I like to call “Pammy Pumpkinhead.” Though I was starting to feel pain, I didn’t have many pain pills left.  The mini-vacation wasn't such a fun time anymore.

It was around this time that my mom-guilt also started to kick in.  Claire's 5th birthday fell on Day 5 of post-op, and I had promised her I would make cupcakes (even though others had offered to bake on my behalf.  I realize I'm still struggling with letting others help me).  One of my character strengths is that when I commit to a project, I like to develop something unique and very special-- especially when it comes to my kids and their birthdays.   As a result, I've created some great memories for my family.  At the same time, I've also collected a lot of stress and tension; my projects are never as simple as I imagine them to be!  By the third damn cupcake, I was tired and messy and wondering why I didn't just pay someone to make professionally decorated baked goods.  (Someone remind me of this next time I start to bake anything that involves decorating, please).  

Cupcakes created during my recovery.  It was my baby's 5th birthday, after all!

On Day 4, the kids, Jeff, and I left the house to obtain my supplies for Project Cupcake.  I was sick of being in the house and ready to experience life outside of my bedroom.  The trip was my first adventure with my silent right ear.  In addition to being a bit uncomfortable, I was also off balance.  Driving in the car felt like I was on a roller coaster, and my depth perception was also impacted.  While shopping, I felt like I was about to fall over my children walking ahead of me.  With only one ear to guide me, loud stores were just a cacophony of noisy sounds.  I realized how difficult it was to really understand the world around me with just the left ear.

By the time our trip was complete and I had spent two hours baking and decorating cupcakes, I was DONE. The pressure in my right ear was pretty bothersome.  Over the night and into the next day, the pressure intensified and my balance continued to be affected.  By the time the post-op appointment came around, I was dizzy and nauseated, and frightened to drive.  Jeff accompanied me to the appointment and the surgeon was quick to identify that I had more swelling than usual.   He thought it was a result of a blood clot behind the incision, which was causing all the pressure.  I went through a series of x-rays to confirm.  After, the surgeon informed Jeff and me that the clot had not impacted the healing, and he thought I could be activated early next week.

Initially, I pictured scheduling the appointment for Monday, the earliest possible day in the work week.  But as I thought about it further, I asked myself, "What is the big difference- really- between activation on Monday and the Friday before?"  

I asked the receptionist about the possibility of a Friday activation and learned the audiologist, Dr. Susan, would not be in her office that day.  But after considering the Friday possibility, I was fired up and decided I wanted activation as soon as possible.  Two celebrations are occurring this weekend- a party for my daughter, and my son's first communion- and I just want to hear something.

"How about Thursday?" I asked.

The receptionist went on and on about how she wasn't sure if she was supposed to schedule anyone on that day and she would have to talk to the audiologist and call me. I provided contact information and in the mean time, I remembered I had a secret weapon: my audiologist's email address.

On the way home, I wrote an email to Dr. Susan and told her about the upcoming weekend's events.  

I received this response: "How about 1:00 on Thursday?   You do understand that you may not hear at the activation.   You will hear sounds, but may not understand speech, which can take months.    I don't want you to have these high expectations that you will hear this communion service..."

I took the appointment.  Though I've been reminded, once again, to keep my expectations in check, I'm really not going into the activation thinking that the audiologist will hit a button and BOOM!  Pam can hear!  I know I am going to have a lot of work and rehabilitation ahead of me. I anticipate certain sounds will be unidentifiable and bizarre at first.  Instead of high expectations, truly, I have no idea what I'm about to experience.  Though I have watched plenty of you tube videos, and though others have shared their activation experiences with me, I am not prepared for tomorrow.   I don't know how I could be.  Of course, I'm extremely curious to start my new life with the cochlear implant.

I'm struggling to find an appropriate ending to this post, so I leave you with this image of a happy little Pam who loved to dance, and who I believe at the time, could hear pretty normally.  I wonder what sounds I'll hear again that will remind me of this time period?  I'll start to find out tomorrow.