Showing posts with label cochlear implant activation. Show all posts
Showing posts with label cochlear implant activation. Show all posts

Wednesday, July 25, 2012

Thank you, Thank you Dunkin' Donuts!

For several years now, I've been running on Dunkin.'

My love affair with Dunkin' Donuts became serious after I had my daughter, Claire. Though I have always liked coffee, I used to be able to take or leave a cup in the morning, and I was not particularly partial to any brand or shop.  Once I became a working mother of two, however, coffee became a necessity, and if I didn't have it, my chances of having a good day were minimal.

My local Dunkin' Donuts is within two miles of my home, and my addiction intensified after experiencing the intoxicating joy of my local drive thru attendant, a blonde and smiling woman my friends and I have come to refer to as "Thank you, Thank you."  Why?  After handing over my money for my necessary morning drink, this woman- who I've since learned starts work before the crack of dawn- cheerfully leans out the window and gives me a glee-igniting smile and wave before saying her signature, upbeat "Thank you, Thank YOU!"

It is the BEST, and I.  LOVE.  HER.

About a year before my surgery, my trips to the drive thru window lessened.  Even in rain and snow, I started to park the car and walk into Dunkin' Donuts to place an order instead of go through the drive thru.  Soon, I was pretty much avoiding the drive thru altogether, which was often inconvenient and time-consuming. As I noticed my hearing declining, the experience of the drive thru- and most experiences in my life, for that matter- became anxiety-provoking.   Receiving my coffee from Thank You, Thank You had always been so fun, but it was no longer the same, and I was plagued with insecurity about not being able to hear the voice over the speaker.  It was yet another reminder that I couldn't perform such an everyday task, and it depressed me.

Since my surgery, I have visited my local Dunkin' Donuts several times, and I have tried the drive thru once again.  In the beginning, it was HORRIBLE, and I would end up pulling the processor off my ear, sometimes abandoning the speaker to give my order at the window.

But I'm improving.   Even though I don't hear each word Thank you, Thank you says over the speaker (or whoever is working the window for that matter), it's getting better.  MUCH better. (Also exciting, though irrelevant to the story, is that I recently purchased an iced coffee koozie from DD.  It's awesome.  So I now have coffee, koozie, drive thru, Thank You, Thank You, and I'm hearing.  WINNING!)

So today I was driving home from a work meeting where I sat among approximately 100 colleagues in an echo-filled hotel conference room non-stop for seven hours.  It was a lot of voices- A LOT of noise- but to date, it was the BEST I have heard at a meeting.

When it was time to leave, I welcomed a brain break.  During my commute home, I took off my processor in need of some quiet.  My ears continued to ring throughout my drive (a common occurrence after a few hours of noise), but I was still given some respite from hours of constant sound.

Tired, I decided to visit a Dunkin' Donuts on the way home for a little pick-me-up (not Thank You, Thank You's location, sadly, but I don't think she works the evening shift anyway).  Pulling up to the speaker, I waited.

And waited.

"Hmm," I thought to myself, "I'm not used to visiting the drive thru this time of day, so I wonder if maybe the staff person doesn't stay by the window as much as a morning attendant might.... Oh WAIT!  My PROCESSOR!"

As quickly as I could, I put the processor back on my ear and sure enough, there was a voice: "Can I take your order?"

When I got to the window, I asked the pretty teenage girl if she had been talking to me for a while without me responding.

"Yes," she said smiling shyly.  The old Pam would have been embarrassed, but I just laughed.  I then told her about my surgery, and still laughing, I told her how nice it was to know the implant was, indeed, working.  She laughed too, and told me she was happy for me.  

Driving away, a smile on my face, I was once again reminded that I'm moving forward in my journey in so many ways.  I said a prayer using one of my favorite phrases: "Thank you, THANK YOU!"

WINNING!

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.

Wednesday, April 25, 2012

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.