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.


  1. Wow as your mother I am so incrediably proud of you. As just a reader...loved it. I can see you on the porch and smiling that your hearing things you thought you never could. Way to go Pam, your on your way. Love you!

    1. Thanks Mom, but I can't help but laugh. This is like on Julie & Julia when the first person to comment is always Julie's mom. :)

  2. Oh, Pam, I loved reading this! I was a little worried since you did not say anything yesterday! I knew it would get better after the mapping! I am SO happy for you!

    1. Thank you Teresa. You've been a wonderful support.

  3. YAY!!! Super exciting news!! I was actually behind you at Dunkin the other morning (drive thru) and wanted to give you a toot....but didn't...but next time- I'll give it a try!! :) Been thinking of you-glad things are looking up!! Carrie Trzaskos

    1. Thanks for commenting, Carrie. Since I've only been through the DD Drive Thru ONCE since activation, I know what morning you are talking about. I wanted to see if I could make out anything with the implant and since my program was so off, it was beyond awful, and I was so discouraged. I just gave up and drove to the window! Thanks for letting me scowl independently without interruption!

  4. Hi Pam- Again I so love reading your Blogs. I am sooo.. happy to hear about your successes! Keep up your fabulous spirit. Your beautiful family are so lucky to have you and I'm sure so proud of you too! Nathalie Hillman

    1. You know I love you Mrs. Hillman. THANK YOU.

  5. Glad to hear things are moving forward.

    1. Thanks Dave. I'm moving forward at a snail's pace, but I'll get there!

  6. Pam, Patti Pepe told me about your surgery and your blog and I just HAD to read it. I understand, more than you know, about how you have been feeling. When my BAHA was first activated, I heard my pendulum clock ticking on the wall and I stood up looking around for whatever that "annoying" sound was that I hadn't heard. Songs on the radio all sounded like remakes to me, so long only listening to things with one ear. Things will get better, trust in yourself, trust in Sharon. You will learn how to mask the tinnitus (mine is horrible) but eventually you WILL be able to ignore it. I am so happy for you and can't wait to see you in all of your "hearing" glory!!

    1. Funny you should write... I was JUST thinking of you! I am sure you can relate to much of my story, and I appreciate you taking the time to read and comment. One HUGE positive is that the absolutely dreadful "tea kettle whistling" tinnitus only lasted a night... one long, sleepless night. Hopefully it stays away. I do have another version that shows up from time to time-- more like carousel music, but it is fleeting and hasn't kept me awake, thankfully. I look forward to seeing you soon, and I hope to be as successful as you have been since your surgery. Thanks Rhonda!

    2. Pam, looking forward to another update from you soon. Hope you're doing okay.

    3. Thank you for thinking of me. The last month has been so busy that I think I am overloaded with topics to write about and not sure where to begin! Another mapping appointment tomorrow, so I'll be updating soon!