Sunday, May 20, 2012

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.

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

Tuesday, May 8, 2012

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.

Tuesday, May 1, 2012

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 7th, 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.