One Month In: Good Days, Bad Days, French Lit and Modern Family

Hard to believe it has been an entire month since my surgery. 

Of all the occasions thus far, my first mapping day proved to be my most victorious situation yet.  Noises surrounding me seemed to be normalizing; instead of hearing voices comprised of 95% beep and 5% robot, I transitioned to around 70% voice and 30% robot.  The latter mix has been much more tolerable.

Since my audiologist, Dr. Sharon, told me I was doing so wonderfully, I was fired up to rehabilitate and to truly start hearing.  I had previously purchased an app on my smart phone; though designed for children, I figured it couldn’t hurt for me to try it.  The app is called Hope Words and it is made by Cochlear, the company that also manufactures my implant.  The premise behind the app is that the user can select a letter of the alphabet and the program will go through various vocabulary words and pictures for a particular sound. 

When I was first activated, I would go through the words and they sounded much too similar to identify.

Banana.  WOOT WOOT WOOT.

Apple.  WOOT WOOT.

Bear.  WOOT.

Sometimes, I wouldn’t even get the syllable count right.  My children would select a word and with little sound recognition other than WOOT, I’d try guessing.

“Um, ball?”

They’d laugh and tell me I wasn’t even close. 

“Banana, Mommy, Banana!” Colin would yell through laughter.  Funny for him, I guess, but I was beyond frustrated.

The day of the first mapping I went through a lot of the words again, and I felt like I was doing better.  Apple, for example, started to sound like “Ah-eh,” which is more like apple than “WOOT WOOT” anyway. 

My confidence was really high on mapping day, and after the kids went to bed, I asked Jeff to cover his face with a magazine and to state completely made up, ridiculous sentences, removing context altogether.  This was quite a task for Jeff who isn’t exactly the nonsensical type, but with time and practice, he was talking about elephants wearing clothes and pooping birds driving cars, and really anything that failed to give me context clues or lips.  I wanted to really see if I was improving. 

I was repeating most everything accurately, and Jeff decided to advance my rehabilitation practice to the next level.  I was thinking more along the lines of Dr. Seuss, but leave it to cerebral Jeff to read aloud a selection from French Literature.   As he recited passages from Remembrance of Things Past by Marcel Proust, I was soon repeating phrases like “almost the purple hue of tilled fields in autumn,” and my growing self-assurance was turning into giddiness.  IT WAS WORKING.

To really test how well I was doing, however, I removed the implant processor (without the processor I am deaf on the right side), and we tested my abilities again, this time only my left ear (with its natural hearing) listening.  I expected I would do terribly, a true testament to my implant’s new found success and glory, but oddly enough, I was still doing pretty well.  What the heck was going on?  So much for my giddiness.

More than a year ago, as I slooooowly began to accept my hearing impairment, I attended presentations and support groups.  I had avoided such groups in the past because I didn’t think I would find anyone who would relate to me; I could hear some sounds, after all, and I didn’t wear hearing aids or know sign language.  I also figured I’d be the youngest person there, and sure enough, at my first support group, all of the attendants were a good thirty years older than me. 

Still, there was an instance in one of those groups when a husband was talking about his wife’s declining hearing.  He said, “Some days are better than others… she has good hearing days and bad hearing days.”  That statement was particularly validating for me.  For years, I referred to the good day/bad day philosophy, but wondered if it was all in my head.  For example, I especially noticed my good days in professional situations.  These were days I was just ON, and I would wonder if I was defying science and somehow re-growing hair cells in my inner ear.  And then other days, I would experience the opposite end of the spectrum.  I’d be completely lost, holding back tears (or maybe letting them flow freely depending on how hormonal I was on the bad day), and certain that I would be completely deaf by the following morning.  The support group attendees assured me I was not alone; they too, had good hearing days and bad.

I hate to downplay the success of my first mapping (I can already hear my readers telling me to be kind to myself), but looking back, I think Mapping Day was a really, really good hearing day.  I know the mapping  substantially reduced background noise that previously cluttered my soundscapes in the implanted ear, but I also feel that my left ear and all of its natural hearing was just ON that day.  Together, my left and right ears were little champions.  

But bad days soon arrived.  Following my first mapping, I attended an important meeting of approximately fifty people and it began with attendees greeting each other while grabbing coffee and pastries.  I entered the room and it was LOUD.  As people started talking to me, I was struggling to make out words. 

“Hold on,” I told a friend during an attempted conversation as a I fished through my bag for my implant’s remote control. 

Yes, I am now operated by remote control.  Let me pause to explain the controller, because this feature is a pretty fascinating component of my new status as a bionic woman.  With the remote, I can change the implant’s settings.  Right now I have access to four different settings designed for different listening situations- everyday, noisy, focus, or music.  I can also adjust the volume and the sensitivity on a given program.  The greater the sensitivity, the larger the range.  So if my sensitivity is on level twelve, for example, it’s more likely that I will pick up on noises several yards away than if I had it at level six.  In a noisy room, it can be helpful to reduce sensitivity to be able to hear the person speaking right next to me. 

So anyway, I tried to make adjustments to get to a comfortable setting, but no matter what I did, I could not understand.  As the meeting progressed, I comprehended very little of what was being discussed.  Another moment of defeat and another bad day.  My pity party was brief, though; I realized I just needed to keep practicing. 

I’m also constantly reminding myself that I have to work my implanted ear.  I am still  relying on my left ear- the ear that sounds “normal” to me- and my implanted ear isn’t even breaking a sweat.  I’ve tried cramming an ear plug in my left ear, but it’s no use.   My left ear (“the little ear that could,” as my one friend calls it) still tries to compensate for the implanted ear. 

A way to work through this is to connect an audio cable directly to my processor so that my implanted ear is forced to try and make out dialogue without assistance from the other ear.  It’s particularly effective while watching television.  I have one friend who rehabilitated with the help of 30 Rock, and another who chose evening news broadcasts.  Equipped with a new Hulu subscription, I decided that Modern Family would serve as my rehab selection.  Let me just say that I am thrilled with my choice.  First of all, Modern Family is effing hilarious (How funny was Lily on a leash at Disney Land?), and second, I have the diverse voices of adults, kids, men, women, gay, straight and even a thick Latina accent to challenge me.  Though I’m not able to understand much without captions, occasionally I catch myself understanding a word or two without looking.  In any case, the more I listen, I realize that the world is quieter and more difficult to understand without the implant—another minor victory considering I wanted to throw the device in the PCB-laden Hudson River when I first started wearing it.

One month in, and I’m still waiting for my amazing “I can’t believe I heard that” CI moment.  On the flip side, I haven’t experienced a moment of agony either, so I remain optimistic. And hey—I’ve already realized I prefer Modern Family over French Literature.    Slow and steady, I progress, continuing my journey of both good days and bad.

My rehabilitation team

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.

My Unforgettable Activation Experience

We survived.  3 days after activation, bucket-free and smiling at my son's first communion.

Remember how I claimed I had no expectations for the activation?  In fact, my exact words were, “Instead of high expectations, truly, I have no idea what I'm about to experience.”  I apologize.  I lied.

I did not believe I would go to the audiologist’s office and walk out understanding everything around me.  But I had excitedly daydreamed experiencing some minor improvement.  Nothing big, but maybe noticing a bird chirping, for example, or maybe a sound in the car, or possibly understanding a word or two said to me without having to look at a person.  

It didn’t happen.

On the morning of activation day, Jeff informed me that our five year old, Claire, was burning up with a fever.   Our original plan was for Jeff and I to attend the activation and leave Claire with her babysitter, but the fever obviously changed our plans.  I figured I’d get the temperature under control and Claire would just have to come with us.  Jeff then reminded me how our son, Colin, had wanted to attend the activation all along.  We discussed how pissed Colin would be once he found out Claire got to go and not him.  So we decided I would pick up Colin early from school so he could go too.  The activation would be a whole family affair.

Since this was a last minute decision, the school wasn’t prepared, so when I arrived to retrieve Colin (after putting poor, sick Claire in the car),  the office staff couldn’t locate him at first.  I was already behind schedule, and I started to worry we weren’t going to make the appointment, and in effect,  I wouldn’t be able to savor my blissful, miraculous moment for as long as I’d like.

When Colin came out of the school, he was totally confused and angry at me for surprising him.  So I was late, Colin was mad at me, Claire’s facial coloring had taken on a greenish hue, and I was also really thirsty.  When situations like this occur in my family, we have a special retreat we go to and our world becomes a more peaceful place: Dunkin Donuts.  Yes, I knew we were late, but I also knew my angst would be calmed with a hazelnut iced coffee. 

At this point, I was still only equipped with my left ear and its 20% hearing, so I couldn’t pursue the time-saving option of the DD drive thru.  I had to go in.

The kids requested strawberry coolattas; once I was in Dunkin Donuts, I gave my order, and the person behind the counter looked totally confused.  She finally told me why. 

“I’m sorry,” she said.  “I’m new.”  Of course she was new.

So Dunkin Donuts took longer than normal too.  At that point, I was definitely running late,  I was an hour away from the audiologist , and I still had to pick up Jeff at his office.

Then Claire announced she had use to the bathroom.  Sigh.  So I called Jeff and he decided to stand in the office parking lot so that as soon as we arrive, he could grab Claire, run her into the bathroom, and we’d be on our way as soon as possible.  And that’s what happened (Claire peed the fastest she ever had in her life), except that when Claire got back into the car, she accidentally knocked over her bright red strawberry coolatta.  Though I typically store extra paper towels and tissues in the car, I had just run out.  Coolatta was all over the backseat, Claire, and me.  But we had to continue.  Mama must hear!

Just when I started to think we were going to be on time for the appointment, my maternal instinct kicked in.  I JUST KNEW something bad was going to happen.  I turned around and asked Claire if she felt alright, but it was obvious she felt terrible.

“Are you going to throw up, Claire?” I asked.  She nodded and it happened.   EVERYWHERE.

Remember, I had no paper towels, and no spare tissues.  Luckily, I had a blanket I had packed for the car ride, so we were able to clean Claire up a bit with it.  I felt horrible for her because I knew she was trying to be strong.  And I selfishly admit, I was also feeling terrible for me.  This was supposed to be my happy day, a milestone I would happily remember… and it was falling apart.

When we got to the audiologist’s office, Colin and I went in while Jeff stayed with Claire to help clean her up some more.  The staff wanted me to go in the office right away, but I explained I was waiting for my husband and daughter to meet me because I wanted them to be part of the activation too.  I also explained that we had “quite a trip,” and told them about Claire getting sick.  Right on cue, the office door opened, Claire walked in, and she puked right on the carpet.  Just awful.  I could not believe what was happening.

In the mean time, I still had to get activated.  The audiologist had fit me in her very busy schedule because I had made a special request.  Being that we were at an office specializing in ear, nose, and throat issues, the staff had much professional experience working with patients who struggle with balance and motion sickness.  They had many vomit materials ready, luckily, and Claire was given a “special bucket” for the rest of the visit.  The whole family, and the bucket, sat together in the office as the activation appointment started.

Another part of the original activation plan was that Jeff was going to record the event.  If you haven’t seen an emotional youtube video of a recipient’s cochlear implant activation, I strongly recommend them.  I can watch them over and over again and I cry every time.  They are just the most beautiful moments captured on film, and prior to my activation appointment, I anticipated that I would capture my own experience complete with happy tears and praise to God.   However, with Jeff now having to watch Claire closely, Colin had filled in as the day’s videographer.   

The audiologist started with a simple hearing test.  I was instructed to raise my hand when I heard a beep.  It was very simple, and I heard tons of beeps.  And then I heard a sound I had never heard before.

“Was that a high pitch?” I asked Dr. Susan. 

It was—for the first time I can remember - I heard a very high pitch tone during a hearing test.  And the happy tear rolled down my cheek.  I then recalled we were documenting this on video.  I looked over at my cameraman, but I guess he had found a game to play on my iPhone that was much more exciting than his filming responsibilities.  Oh well.  In any case, that was truly the “high note” of the appointment for me.   It was all downhill from there.

After the hearing test, it was time for the real activation—the first moments I would hear voices with the device.  Dr. Susan told me it was on, and Colin started talking to me.  On my left side (the unactivated ear with its natural hearing), I heard what I always have-- Colin’s voice.  And on the right side, I heard total bizarreness. 

I had heard that during activation, voices could take on a robotic quality, but it wasn’t as if Colin was talking in a “robot voice.”  It didn’t sound like “speech” at all.  It was more like a synthesizer or some very odd soundtrack to a science fiction movie.  And then the weird tones started to layer on top of each other as more sounds came in, though I didn’t know what they were—maybe the audiologist’s phone, or the tapping on a desk, the crumpling of paper.  Whatever those sounds were, they just sounded like keyboard notes.  Dr. Susan talking: a keyboard note.  Cars outside driving by: a keyboard note.  Snapping my fingers: a keyboard note.  And meanwhile, my left ear and its 20% hearing was trying to hear OVER all of this ruckus to make sense of the world.   And my reaction to my new world of sound was, “What the HELL is THIS?”

Dr. Susan instructed me that she would continue to talk about my implant materials as I got used to the device.  So she was talking and my left ear was hearing her, while I read her lips (as I always have) but the activated ear was still hearing nonsense, and I started to feel incredibly defeated.  Dr. Susan continued talking but I wasn’t following.  My focus was slipping, and I was starting to feel as though I had screwed up. In my implanted head, I asked myself: What have I done?

When Claire wasn’t vomiting (Yes, the bucket was in-use during the ENTIRE appointment), Jeff was paying attention to Dr. Susan. They both knew I was totally overwhelmed, as well as disappointed. Not only could I not hear, but I couldn’t even keep the damn device on my head.  The magnet that came with the processor was not strong enough for my thick skull, so we had to upgrade to the next level.  As I struggled to put on the processor and it continuously fell to the floor, the ugly cry started.  My internal dialogue was telling me how bad I sucked at cochlear implants!  This was NOT my beautiful moment I had so desperately hoped for. 

As my sad-looking family left the appointment, my sobs reached a new level of ugliness as we headed to our car.  Jeff, per usual, remained calm, gave me a hug and told me he accepted that this was a common scenario for an activation (minus the spilling coolattas and pukey kid).  He reminded me: It will take time.

It’s been four days since the activation and for the most part, I’ve worn the device when I am awake.  My one success is that I am doing much better at keeping the strong magnet stuck to my thick-skulled head. Other than that, I’m still awaiting my miracle moment. 

For example, as the oven timer counted down on the stove yesterday, I waited anxiously to hear that high note.  3, 2, 1… and… nothing. 

At my in-laws, I saw the kids with their hands over their ears as breakfast was being cooked.  I turned to see, and my mother-in-law hurried over to turn off the smoke alarm.  I didn’t hear it.

I don’t want to lead readers to believe that my implant doesn’t work; the first hearing test proved that I was not given a defective implant, and I hear a difference in my environment each time I turn it on.  The reality is that for years, without knowing I was doing it, I trained my brain to make sense of the world with the limited hearing I was given.  Once again, I have to work to train my brain to make sense of all of this new information.  And the audiologist will help.  My first mapping appointment is May 7^th, and this is when Dr. Susan and I will start to fine-tune a program that is unique and individual to me.    

Once again, I am struggling with my unrealistic expectations.  My activation was not the emotional, youtube-ready grand finale I desired, and at the time, it hurt pretty bad.  I understand now that it was a step forward toward the happy ending I have to believe I will one day experience.  And the journey continues, one day at a time.

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. 

 

Surgery Day

Jeff and I post-surgery with my new friend, "Jock Strap"

When I woke up in the recovery room, my first thought was: "It's over?" 

I touched the top of my head and was surprised- and pleased-  to not be wrapped up in bandages, turban-style, as I anticipated.  (After consulting with other recipients, I feel quite blessed that I received the prestigious velcro bandage that I affectionately nicknamed the “jock strap.”  It’s easily removable and pretty comfortable.  I got lucky.)

While touching the bandage, I immediately thought, "Can I still hear?"

I started banging the bed, clapping my hands, snapping my fingers... making any possible noise to see if my right ear got anything.  In my drug-induced state, I was certain the right ear was still hearing.  I even grabbed the male nurse next to me and told him, “Hey! I think I can still hear!”  I then looked up to God and said, "Thank you."  And lastly, I looked around and realized other patients were in the room with me, also trying to recover before heading to post-op, and being forced to listen to the young woman with a jock strap attached to her head, happily clapping and snapping. 

I also realized it was about 4:30 in the afternoon, which meant I had not seen Jeff for over three hours.  I didn't even remember saying goodbye to him, but when I woke up, I wanted to see him immediately.  The drugs made me comfortable, and I was also very loving.  I told the nurses how nice they were several times (I wasn't making it up-- they WERE nice), and I kept asking for my husband, telling the nurses I love him and that he's really sweet and handsome.  (That IS the truth, though the drugs certainly provoked me to be more candid than usual with complete strangers).  Luckily, Jeff and I were reunited before 5 PM, and he informed me per his discussion with the surgeon that everything had gone perfectly.  I was feeling great.

Although surgery day was a bit of a blur, I can recall some specific memories before heading off to the hospital.  One of those times is when I said goodbye to the kids; if you’ve been following the blog, you know I’ve pictured this scene in my mind repeatedly and that I’ve cried instantly when thinking about it.   As a mother, it was a very touching moment for me, but I didn't break down crying on Colin and Claire’s little shoulders like I pictured.

The individual goodbyes from the kids were reflective of their personalities.  Claire was first.   She wrapped her tiny arms around me and said, "I love you, Mommy, and I hope you have a very good surgery."  Then she sweetly put her mouth next to cheek and just for my right ear, she whispered, "I love you, Mommy."  She walked out the door to her ride to school, blowing me kisses and mouthing "I love you" until she got in the car.  She is the best.

Colin was next.  He hugged me too, although it was more like ME hugging HIM, and that was expected with an eight year old boy.  He mumbled he loved me, but the best part about Colin's goodbye was his honestly.

"I don't get why we are acting sad when this surgery is going to make you hear BETTER!" he said.

It was a good point, very Jeff-like, and a reminder of all the blessings to come.  Colin wasn’t worried because he realized in time, not just my life, but our lives were going to improve.  Colin's not the kind of kid who is going to whisper sugar-coated Hallmark card phrases to me (that's what Claire is for, after all), but Colin can be very wise.  His perspective cut through the anxiety I was feeling and made me remember the bigger picture.

It wasn’t soon after I said goodbye to Colin and Claire that Jeff and I were off to the hospital.  And remarkably, I was quiet, calm… I didn’t cry.    Once we arrived, things moved quickly.  After putting on the hospital gown and a bit of a wait, I remember Jeff telling me it was “show time,” though I don’t specifically recall saying goodbye to him.  I somewhat remember being wheeled into a room where it seemed as though there were nurses everywhere preparing me for surgery… one was putting massage-like things on my legs, one was putting sticky circles and wires on my chest…   I remember seeing my name on a whiteboard in that room, and I remember saying a prayer for all the people who had offered so much love and support to me over the last few weeks.

The next thing I knew, I was making a lot of noise in the recovery room and telling people how cute my husband is!  And I was so grateful… I just knew when I woke up that I made the right decision to go through with the surgery.  I just knew I was going to be okay.

Almost 48 hours later, I’m still okay.  I have experienced many of the normal side effects from the procedure.  I’ve had a hard time eating (my jaw is sore) but smoothies are one of my favorite foods anyway!  My taste buds have also changed; I was warned of a metallic taste in my mouth, and sure enough, the flavor of food is pretty dulled.  In the first 24 hours, I had very minimal pain, but as Day 2 approached, swelling increased.  In addition to looking a bit like a hobbit, my head and neck also hurt.  Thank God for pain meds, and don’t worry!  I am taking them regularly!

Also, as soon I was given the okay to take the jock strap off, I had Jeff put a headphone in my right ear and play a song without telling me what it was… and I got nothing.  So, as I was warned, I assume I am officially deaf in my right ear.  What is unexpected, however, is that I really had to perform the headphone test to know for sure.  It is amazing how much my left ear compensates (which is why I thought I was still hearing out of the right side in the post-op room).  Also remarkable is though I can’t hear sound out of my right ear, I still sense energy on that side.  It’s a strange sensation to explain but I spoke with a friend who is deaf and he understood what I meant.  I thought I would be sad to lose the hearing, but honestly, the circumstance just fascinates me!  As a blog commenter so eloquently put, my story is an example of losing first in order to gain. And I certainly feel I am gaining more than losing.  With your love and support, I've gained strength, courage, excitement, and an increasing sense of peace. Of course, I'll also be gaining a lot of sound in the right side soon.  I just need to heal a bit first.

The post-operation appointment is scheduled for April 24th and the activation appointment will be next.  In the mean time, I remain on pain meds with jock strap nearby in case I need him, and I send all of you much love and gratitude!  Thank you!

Great Expectations

On Thursday morning, I sat in an examination room.  I was in Albany for my pre-operation appointment, the final time seeing my doctor before the cochlear implant surgery.  While waiting, I looked at a faded piece of paper on the wall that had been framed.  The document was titled “The Top Ten Things I Can Hear.”  In a child’s handwriting, the list included astonishing items (to me, anyway) like “my neighbor talking to me from across the street” to phrases that made me laugh such as “my sister’s loud chewing.”  I felt grateful.   I was even daydreaming career options for myself in audiology, picturing myself helping a child like the creator of the document on the wall.  I was at peace.

And then the surgeon came in.  This was not our first meeting, so I should not have been surprised by the doctor’s lack of bedside manner.  He is known for being a reputable surgeon, after all; I don’t know what possessed me to think that a warm-and-fuzzy, social worker-version of him would be entering the room.  But I did.

I think he said hello, but within seconds, he was dryly reciting a checklist of surgical risks, and I was not at all prepared.  His lack of emotion left me rather unemotional.  I’m not used to feeling an absence of connection with a person I am talking to, let alone, the person who will be drilling a hole in my head in less than a week.  I wondered, did he understand my responsibilities as a wife and mother and my ambitions as a professional?  Was he seeing ME?  Didn’t he want to get to know ME?

In the next fifteen minutes, additional information was presented that caught me off guard.  The surgeon and I had a brief discussion of  disturbing (though very rare) side effects such as FACIAL PARALYSIS (SCARY), but mostly, we discussed the natural deafness that would fill my right ear.

“Now, you’re prepared,” he began, “to have no hearing left on your right side.”

I responded, “Well, I thought there was a chance some of my natural hearing would remain… I’ve heard it can happen.”

The emotionless expression remained on the surgeon’s face and he told me that while some recipients report having residual hearing, I should not expect to keep mine.  Funny how I panicked over the extremely rare threat of facial paralysis and yet I had been so assured that I would defy the odds regarding residual hearing.  I realized that my thinking up to that point had been jaded by these expectations that my surgery would somehow be exceptional—that I would wake up with my 20% natural hearing untouched, though every other recipient I’ve met had lost most or all of theirs.  I hadn’t truly believed that my right ear’s hearing would go away, never to return, until that moment.

Before the surgeon and I parted, I asked him if I would be seeing the audiologist.  He told me it wasn’t necessary during the pre-op unless I needed to talk to her for a specific reason.  It was then I realized that another expectation for my surgery was not going to happen.

It hit me like a ton of bricks.  The pre-op appointment is with the surgeon, discussing the incision, the pain medication… basically all that the surgery involves.  Why did I think the post-op would be any different? 
On the way out, I asked the nurse the question I already knew the answer to.
 
“So when I come to the post-op appointment, I won’t be getting activated that day?”

“Oh no,” she laughed.  “You have to heal first!  You won’t be getting activated until maybe, three weeks after the surgery.  But don’t worry—you’ll be hearing by summer!”

In a period of thirty minutes, I  truly realized I would  be deaf on one side, and also that the weeks following the surgery would be much different than I initially anticipated. Driving out of the parking lot, my mind was racing.  I had been prepared for 6 days un-activated, but three whole weeks or more?  How would I get through my daughter’s birthday  party?  I was so looking forward to hearing in church during my son’s first communion, and now I wouldn’t hear anything!  How would I tutor?  Baseball games, dance lessons… how was I going to do this?

It is thirteen highway exits from Albany to my husband’s office building, and I called him to see if he could meet me in the parking lot.  When the passenger door of my car opened and I looked in his eyes, I knew he understood why I unexpectedly drove there at 11 AM.  I was scared.  So much, that I wasn’t thinking clearly and even began doubting my decision.

 "What if he hits a nerve," I wailed, mascara running down my cheeks, "And I have facial paralysis... you promise you'll love me even if I have a droopy face?"

 "That's not going to happen, but if it did Pam, yes, I'll still love you."

We went on this way for awhile, me providing a terrible what-if scenario and then Jeff responding that it wasn’t going to happen.  My stress was all the more escalated because of my disappointment regarding post-surgery, and my emotions were running wild.  The tears had grown out of control, and any rational thinking was now replaced with uber-dramatic dialogue.

“I just wish I had more time to connect with the doctor,” I cried to Jeff.  “I should have reached for his hand.  I just wanted him to cradle me and tell me I would be okay.”  (Yes, I actually said this.)

It was that moment that Jeff looked me straight in the eye and said, “I don’t want you to take this the wrong way.   But you’re NOT THAT SPECIAL.”

Well, that shut me up.  I hope I’m not presenting Jeff in a negative light, because the tough love he gave me was EXACTLY what I needed to hear, and I remain grateful for the reality check.  In so many areas of my life, I dream up these exceptional, romanticized scenarios that in no way would be realistic unless my life was a movie or Broadway musical production.  Because of these overblown expectations- with my family, with my career, with myself- I constantly set myself up for disappointment.  And I was doing it again, creating ridiculous expectations for the surgeon to shield me from all that is bad in the world.  Jeff’s words made me realize I was dealing with a surgeon, not Superman, not my best friend, not a counselor.  He was a surgeon, and he was doing his job. 

Claire's Commentary

This morning I had my pre-operation appointment, the final appointment before the surgery.  Once again, the reality that this is really happening is setting in.  After going through all the possible worst-case scenarios with the surgeon, my excitement is GONE. Here I sit after sharing my story, receiving so much encouragement, and yet I can't believe I am asking myself, "Am I making the right choice?"  Other recipients have assured me of the emotional roller coaster that accompanies this process, and I certainly hope this is the most frightening part of the ride. 

I spent some time this evening re-reading the notes that were sent to me when I initially posted the blog.  Many included comments regarding my courage.   Tonight, I depended on those notes because I feel anything but brave.  I've also been watching a video of my four year old daughter, Claire.  I recorded it last week, when she came in my bedroom unable to sleep, and we discussed my upcoming surgery.  We then fell asleep watching her new favorite show on the Food Network: Diners, Drive Ins, and Dives (there is no relevance to including this other than I find it funny).    Anyway, like all of the encouraging notes, this video of my daughter quiets my doubts and rebuilds my courage each time I watch.  I hope you like it too.