Life Whispers

Life has been whispering to me over the course of the last year.

I've known that I have been holding my truth too closely. I've known I should share my stories once more. But like many of life's journeys, the longer I let it go, the stronger the case was for me not to return. It seemed too hard, too much, to write any more about my hearing journey.

My life, and its inclusion of progressive hearing loss, has offered its share of intense frustration. Then there was the introduction of my cochlear implant in 2012, and the shiny hope attached to it that life would quickly get better. And then... there was its aftermath with its own frustrations, and the disappointment when I didn't hear the way I assumed I would.

Through the tears and tantrums, the pity parties, and the anger over not being able to hear “normally,” I have never doubted that this journey is exactly the life I am supposed to be living. From the time I was a child, I instinctively grasped that while I often resented my circumstances, it was a journey meant for me. I suspected purpose behind it all.

When I started this blog almost three years ago, that purpose became more clear. Sharing who I was- the good, the bad, and the vulnerable- seemed to strike a chord in people. I began connecting with family, friends and even strangers in a more meaningful way, and because I opened up, I found others did the same with me.

In 2013, I remember my husband, kids and I driving to the ocean for summer vacation. I received a message from a mother whose son was born with a developmental difference. She shared her hopes that in spite of his challenges, he would be able to confidently approach his life and accomplish his goals. She revealed she was also printing my blog posts and saving them for her little boy to one day read. Slumped in the passenger seat, I read her message over and over again. I was so incredibly moved, crying quietly to myself for miles as we drove down the coastline.

I felt as though my journey- and the sharing of it- was making a difference. It energized me. It freed me. It encouraged a greater acceptance and self-potential than I knew I could reach.

And then I stopped. A busy life got in the way.

Skydiving, Lake George. August 2013.

Those whispers-- they would come to me in life's more interesting moments. The time I jumped out of an airplane and couldn't hear a thing. The first time I saw a play and understood everything. The time I finally mustered enough courage to ask for closed captioning glasses at the movie theater, only to have them NOT work (resulting in free tickets- much to my kids' amusement- for a future visit). The time I tried again, and for the first time in ages, actually understood and enjoyed a movie. The time I was accepted into a research study at Vanderbilt University, and worked with the best in the audiology world to achieve better hearing. The time my sister, also living with progressive hearing loss, pursued a cochlear implant and how her results differed from mine.

Enthusiastically posing during Visit 1 at Vanderbilt University, Nashville.  July 2014.

Each time, a quiet thought would pass through: You should write about that, Pam.  And for a moment, I thought I would, only to distract myself with life's busy excuses once more.

Then 2015 introduced itself rather loudly.

I had a lovely reunion with my childhood friends, one who hadn't seen me since I received the cochlear implant. It's always fun to gather others' feedback as to how they perceive I am hearing, and I was pleased she commented on how much better I seemed to speak and understand. But she was also mad at me. She had loved the blog, and felt it had helped people. She was pissed at me for stopping.

The whispers were growing louder.

Immediately following the start of the new year, a dear friend of mine revealed a truth that was a long time in the making, plaguing this person's life with unnecessary exhaustion and secrets. Remembering my own big reveal, and the anxiety as to how people would respond, I can't even begin to express how happy it made me to see someone I love finally choose a life of greater authenticity. And then I questioned if mine was still in that category, or if I was masking my disability once more...

A couple of weeks later, I learned a college friend had tragically lost his life in a car crash. I didn't know Jason especially well- we shared a few classes at Syracuse, and lived near one another in our freshman dorm- but I knew enough to know he was a nice person. Through Facebook and mutual friends, I knew he had a good job, a beautiful wife he adored, a sweet 1 year old baby... he appeared to be a good guy living a good life. He was just 4 days older than me, a fact I did remember from the drunken birthday celebrations during college life. In the week following his death, I found myself wide awake one night, mourning for his wife, son, and parents, acknowledging the fleetingness of this life-- how often we save things for another time, only to never get there. I knew I wanted to write again, and I also knew I should.

A few days before my 34^th birthday, I received an email from a stranger named Joan. She had found my blog about a month after receiving a cochlear implant, and was struggling with painful “zapping” following activation, as if someone was flicking her head each time a noise presented itself. It actually took me a minute to remember my own experiences with this-- those moments a coworker would cough and it felt as though someone was snapping a rubber band at my temples. Reading Joan's pleas to provide her with hope, I felt grateful. I had come so far. If all other instances were whispers, this occurrence was a loud smack in the face. It was a blessing to connect with Joan. I needed to write again, to share again, to connect once more.

I have yet to determine what will come from this post, and any follow-ups to it, but I trust that sharing these thoughts with you is what I should be doing at this point in time. My life has always been richer when I share it. And I nod to my whispers- my dear friend starting fresh, Jason, Joan, and all the others leading to this exact moment. 

When life whispers, it can be tough to listen. But I should in this journey, and I commit to trying harder.

-  This post is dedicated to Jason Anderson.

The Hearing Impaired Hostess

On Sunday night, Jeff's parents, brother, and sister-in-law came over to celebrate Colin's 9th birthday.

It's always a bit chaotic- and certainly much louder- when company is over.  The control freak in me loves to be the hostess, the cook, and the event planner; in fact, I even planned a gala fundraiser in my professional life, and while I did a good job, the task nearly sent me into complete mental deterioration.  This is mostly because of the hearing responsibilities that came with the role- directing people to appropriate places, handling questions thrown my way, and being able to maintain a conversation while usually doing ten other tasks simultaneously, which is very hard to do, by the way, when you need to LOOK at people to understand them.  My at-home events are not as stress-inducing (I can sense my husband rolling his eyes).  Fine, Jeff.  I admit, once in awhile, my lack of hearing leaves me wanting to pull my hair out before a meal even begins.

Sunday evening's dinner was a typical small family gathering.  There were people around talking, or loading their plates, and Claire was coloring in the living room.  I was in the kitchen, the dining room separating our respective rooms from one another, when I realized Claire had not yet specified a drink selection.

"Claire!" I called.  "What do you want to drink?"

She responded, "Lemonade!"

I called back, "Lemonade?  We don't have any lemonade.  How about orange juice?"

"Okay!" she said.

As I went to get the orange juice, I paused.  I acknowledged the moment, just for a second, and I smiled.  Thank you.

She was two rooms away from me, and I GOT THE MESSAGE.  Our exchange was by no means a life-changing conversation, but this example is EXACTLY why I wanted the cochlear implant in the first place.

Being able to call to your child and receive a response is such a normal "mom thing" to do.  Calling out to your guests and being able to offer them what they need is such a normal "hostess thing" to do.  In the past, I've felt inadequate with my inability to do either in a simple manner.

In the spirit of Claire's drink order, you know the phrase: "When life gives you lemons, MAKE LEMONADE," right?  Well, the last few years with my deteriorating hearing, I've felt as though I was given a truckload of lemons.   And I've just stared at these rotten, bitter fruits, damning them, agonizing over what to make out of them.

I'm thinking my cochlear implant journey is my path to a refreshing glass of lemonade. Cheers!

Colin Turns 9

Baby Colin

Nine years ago, I became a Mom.

This concept overall should have scared the crap out of me, but it never did.  I admit I was nervous about becoming a hearing impaired mom, but what brought me even greater anxiety was the possibility of my baby being hearing impaired too.

At 22 years old, I lacked understanding of the real world, and I was greatly unsure of my life.  I was also deeply ashamed of who I was.  I couldn't speak of my hearing without my eyes welling with tears, and if someone else was to speak of my situation, or even ask me a question about it, I felt violated, embarrassed, and buried in self-consciousness.  I also felt guilty for my feelings, because I knew, intellectually, that my hearing impairment was not that big of a deal. Still I couldn't shake my damn emotions, and so I marched into parenthood wrapped in denial, hoping for the best, but deeply worried for the worst.

I think I've always known that at some point or another, I was going to have to accept the life God had given me.  I also believed- and still believe- that my circumstances are no accident, but this didn't necessarily make me feel better about not being able to understand people.  Still, as angry as I could be with my ears, I've always believed I was made this way for a reason.

Now I'm warning you: This might sound crazy.  But I feared God would punish me for my lack of acceptance.  I feared my baby would be born hearing impaired or deaf.

Throughout my pregnancy with Colin, and even three years later in my pregnancy with Claire, I reasoned there was only one way TO FORCE me to accept my life.  I knew I wouldn't be able to help my child develop confidence if I could not be confident in myself.  And so I assumed I would be forced to tackle my truth by having a hearing impaired child. The presumption of this challenge was so monumental to me that it terrified me to my core. 

At 10:43 AM on January 19, 2004, my beautiful baby boy, Colin, was born.  He was absolutely perfect,  and through the afternoon into the evening, my fears melted away... temporarily. 

Jeff had gone home for the night to get some rest, and through middle-of-the-night darkness, a nurse entered my room to let me know Colin was going to be taken to the nursery for tests.  Included was his infant hearing screening, and my chest tensed in anxiety.  The nurse told me to just sleep, but despite the exhaustion that comes with labor, hospital visitors, and new motherhood, I was wide awake.  I told the nurse I needed to know the results of the hearing test immediately.  She was adamant I needed my rest, but agreed she would slip a note under my door letting me know the results.

She told me not to worry, and to get some sleep.  Yeah right.

I stayed awake, my eyes glued to the clock watching each excruciating early morning minute pass by.  Occasionally I would tiptoe to the door of my room (I felt like I was being defiant in rejecting rest, not realizing yet my role as a parent and my right to be with my child).  So I would sneakily pace my way to the door in hopes of getting the results sooner, only to feel like I was being foolish and would anxiously return to my bed moments later.  This went on for what seemed like forever until finally a sliver of light entered the room as the door cracked open.

When I got to the door, THIS note was on the floor:

CONNOR?!  WHO THE HELL IS CONNOR?

I had spent most of the night worrying about this very moment, so I no longer cared if I wasn't following nurse's orders.  I marched to the nursery, the note in hand.  When I found Nurse Kim, she assured me she had mistakenly written "Connor," and that indeed, Colin had passed his screening with flying colors.  He was continuing his tests and doing just fine.

And then, finally, I rested.  Next thing I knew, nine years flew before my eyes.

As the years went on, I am happy to report Colin continues to pass his hearing tests.  We were skeptical during grades 1 and 2, but alas, he achieved a perfect score with the audiologist.  It seems Colin has a combination of selective hearing and a case of "Fisher Fog," otherwise known as a genetic condition where Fisher males seem to be looking through you as you speak to them.  Colin acquired one of the worst cases.

He's also a wonderful kid: witty, passionate, creative, philosophical, athletic, and wise beyond his years.  And now he's nine-- the same age I was when I learned of my crazy hearing.

I'm no longer worried Colin will be hearing impaired, but should it happen, I know I'm a hell of a lot more equipped to support him than I would have been when he entered this world.

Today I can say, I am who I am... and I'm okay.  But I'm not just saying it; I believe it.  And I hope my kids can see that no matter what, they'll be okay too.

Claire, me, and Colin

Pay It Forward

On the evening of November 27, 2012, I was depressed.  I was trying to recover from the exhaustion of my day that had come from once again, trying so hard to pay attention to everyone around me so I could understand the world. 

I was going on seven months with the cochlear implant, and I miserably acknowledged that I was still in such an early development stage regarding my hearing.  It really pissed me off.   I questioned if I’d ever hear normally, thinking I might just be the one person that wouldn’t achieve success through the surgery.   That night, I slouched on my couch, dividing my attention between crap TV and Facebook.

A post from one of my favorite local coffee shops caught my eye, and as I read the story, my mood shifted.  Then, I was crying, but in a good way.  I was so excited that I wanted to share this with the world, and I felt my blog was a good place to start.  I drafted a post rather quickly, re-energized and uplifted by what I had learned.

And then I hesitated.  The two people from the story knew me in the way professionals in the same community know each other- maybe through a Linkedin profile, or through a hello and a smile at a function- but what would they make of some hearing impaired girl talking about them on a blog?  I wasn’t sure, and I didn't feel brave, so I stored the post as a sweet memory. 

That is, until today.  This morning I happened to be at that very coffee shop, and the man from the story, John, stood ahead of me in line.  I was tickled to see him talking to Sue, the coffeeshop owner, because these two are the stars of the story I so wanted to share.

I patted John on the arm, said hello and we re-introduced ourselves to each other and chatted.  We followed up with one another by email, and I revealed to John that  I had written about him but never shared it.  Little did I know John already knew a bit of my story, (He read the ever-so-popular Fitness Barbie!) and encouraged me not only to keep sharing my stories, but to SHOUT them. 

So here I am SHOUTING WITH JOY.  Here, my friends, is my post about John and Sue.  Prepare to be inspired!

Written November 27, 2012

Today is Giving Tuesday.

In the past, I’ve failed to acknowledge the significance of this day, certainly placing a greater emphasis on Black Friday and Cyber Monday.  Today, however, I learned of an act so heartwarming and magical that free shipping and doorbuster deals paled in comparison.

In the nearby city of Glens Falls, NY, there is a gem of a coffee shop called North Country Coffee Café.  Also in town is O’Brien Insurance Agency and today, these two small businesses partnered to create Giving Tuesday magic.

In observance of the day, all purchases made at North Country Coffee Café were compliments of O’Brien Insurance.  They only asked that in return, the customer “pay it forward” by giving in his/her own way to someone else.

Can you picture the joy?  The surprise?  If I went to pay for my cappuccino and found out some stranger had taken care of it for me, I would have happy danced out of the shop!

Over and over today, I’ve imagined smiling customers leaving the North Country Coffee Café  full of inspiration, their hearts equipped with a tad more trust in human kindness.  Some customers wrote down how they planned to pay it forward and posted their ideas on the cafe’s wall.  Others started a Hurricane Sandy donation jar.  And there are people like me who through the power of social media, learned of this great act and then asked myself, “Well, what can I do?”

As I’ve mentioned in previous posts, I sometimes struggle to acknowledge the small victories in my journey, failing to recognize how miraculous it is to hear a certain sound that I have never heard before.  I’ve also realized that when I fear I’ll produce something less than magnificent (such as when I blow off my rehab exercises because I don’t want to score less than perfect), instead of doing something, I do nothing at all.  And THAT is the biggest failure there is.

Today’s kindness at the coffee shop reminded me that even one small act can be truly meaningful.  And when you combine a bunch of small acts together… well, that is absolute magnificence. 

So I march onward, inspired by today’s acts, and gratefully taking each small whistle, beep and buzz with me in my journey toward clarity.

The Golden Globes

For as long as I can remember, I've loved The Golden Globes.

I have always thought of it as the ultimate award show, a champagne-fueled room full of film and television elite, where amongst the glitz and glamour I could discreetly hold hands under the table with Justin Timberlake.  It's been a long-term fantasy of mine.

Well, the JT part is more of a recent development, but otherwise I've enjoyed this fantasy since I was a little girl.   I spent hours dreaming of having the best dressed hair, makeup, and gown, practicing my surprised and humbled expression as a nominee, and perfecting a speech that would bring the audience to hopeful tears.

As a child, I was a performer.  A dancer and singer.  An actress.  Somewhere in storage is a black and white headshot of me as an aspiring child star, my name beneath my chubby-cheeked smiling face.

In a leotard and ballet slippers: TADA!

In fact, it's a shame most of you missed my critically acclaimed performance in a play I also wrote.  It was a modern adaptation of The Ugly Duckling in which I played the girlfriend of the lead character, Snoop Ducky Duck.  My role even included an alternate version of On My Own from Les Miserables featuring the following lyrics:  "On my own, I love a duck with a beauty.  That lies within him oh so truly.  And even though the other ducks they say: He's ugly, oh I hate him, he's disgusting... how they rate him."

I know.  I can't make this stuff up.

I had a passion for show business until probably my early teen years. That's when I started to hesitate.

I remember thinking I could never audition for a show because the director might be seated at a distance and ask me a question.  This was an imaginary scenario, of course, but in my mind, I pictured myself unable to hear him, leaving me frozen in embarrassment and running offstage in tears.

I didn't ever want to take that risk.  And so I pushed my starlet dreams aside.  I let go.

Since my surgery, and since the blog, my eyes have opened to the many times I've failed to even try something I might enjoy-- not because of fear I would fail, but because I have been so scared of the vulnerability that accompanies revealing my true self in the process.  That fear alone was debilitating enough to keep me from embracing what I truly love in this world.

I vow the future will be different.

Therefore, without fear, should I one day receive a second chance to perform, I accept.  And if this performance merits an invitation to a future Golden Globes, so be it.  Just know, Foreign Hollywood Press, that you'll get my true JT-stalking self in attendance.

Kindergarten Critics

Me and Claire-December 2012.

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

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

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

It was hard giving this speech. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Bright Side

I like to think I am an optimist… that I try to see the good in even the bleakest of situations.  However, when I’m in a Dayquil-fueled fog accompanied by head-buzzing misery, I struggle to see the bright side.

Prior to Thanksgiving, I caught the dreaded stomach bug.   A week later I replaced my condition with a never-ending sore throat and sinus headache.  I’ve had two colds since my surgery, and both times, it seems my cochlear implant’s functionality is compromised during cold and flu season.  For me, a simple cold now coexists with head pressure surrounding my implant site, and more annoyingly, a constant buzzing that remains ringing through my head regardless of whether I am wearing the processor or not.  That’s right; even when the implant is OFF, I still hear noise—a condition common to people with cochlear implants known as tinnitus, also known as “ringing of the ears.”  Some people have this without being hearing impaired or having an implant, and it’s my understanding that deaf or not, it sucks for everyone. 

Additionally, certain noises seem to be even more obnoxious than normal when I’m sick.  Head-buzzing is one of them.  Another is the high pitch squeal of Claire’s screams when she plays with her brother.  This has always annoyed Jeff, but pre-surgery, I was oblivious to its occurrence.  Well, I hear it now and OH. MY. GOD.  Little girl screams are the WORST. 

As you can probably tell, I’ve been grumpy, and though I should probably focus on my blessings during this most-wonderful-time-of-the-year, I admit I haven’t been feeling very thankful.  I thrive to hear voices, after all… clearly and effortlessly; I didn’t get this surgery to hear squeals and buzzes.  And so, I’ve spent the last few weeks pretty pissed off toward my cochlear implant progress.

Today, however, and in more ways than one, I was lucky to see some light.  It appeared during an all-day training held in a large, hotel banquet room.  The majority of the training was lecture-style, and the speaker was great—charismatic, interesting, and to my luck, he spoke loudly and clearly.  Even better, I realized I didn’t have to work to understand him… that is, until I slid my processor magnet off my head to see what he would sound like without the implant.

He wasn’t clear.  And he wasn’t loud.  I had no clue what he was saying.

It would be a disservice to the implant not to acknowledge its value to me when I’m attending presentations and lectures.  In that setting, and with the right speaker, it is working.  Upon realizing this, the room brightened.

The training, incidentally, focused on cultural diversity and social identities, and considering my 23 years of experience with a disability, I felt I could contribute to the discussion.  After sharing some of my story with the participants, one woman added that when she first heard my voice, she wanted to know “where my unique accent was from.”

There it was—the reaction to my speech that I try to make sound as normal as possible.  Sometimes I get the “Where-are-you-from question,” and other times, and especially from kids, I get the frank “You-talk-funny” statement.  On occasion I’m asked if I have my tongue pierced.

Then there’s my favorite-- when a daycare parent once looked at me inquisitively while I spoke and then commented, “You’re so exotic.  Where are you from?” 

To which I replied, “New Jersey.”

If ten years ago, a colleague had pointed out I talked differently in front of 50+ professionals, I most certainly would have been embarrassed.  I might have cried.  And I definitely would have wanted to wring that lady’s neck for spotlighting the fact that I was different.

Today, however, there was no bitterness.  I realized she wasn’t trying to hurt my feelings, but that she was curious—that’s all.  Just. Curious.  What a difference from a decade ago…  Hell, even a year ago!  My progress in self-acceptance continues to surprise me and truly brighten my days. 

I realized today that the bright side is there, but it is my choice whether or not to let the light in.  Moreso, when the journey seems foggy and dark, it is up to me to remember those moments of brightness.  During the 2012 holiday season, my first Christmas with the implant, I choose for my days to be merry and bright.   I wish the same for all of you.

Our Hometown Tree

The Rockefeller Center Christmas Tree beginning its journey from my hometown of Flanders, NJ

Last night started like most other weeknights: I was hungry in bed trying to convince myself NOT to have ice cream (FAIL), Jeff was in the living room reading about nineteenth century Russia, and I tried my best to maintain optimal focus between concurrent games of Draw Something and Bravo reality shows.  Then something magical happened.   Lighting up my facebook news feed like a Christmas tree, was just that: a Christmas tree, but this was no ordinary tree—THIS was a 10 ton Norway Spruce from my hometown of Flanders, New Jersey, selected as this year’s iconic Christmas tree at Rockefeller Center.

My parents still live in Flanders, while many of my classmates from high school live in or nearby the suburban town located in northwestern New Jersey.  The town and its surrounding areas were not spared from Hurricane Sandy’s destructive path, and while my parents were extremely fortunate to lose electricity for only 48 hours, I learned through facebook that many of my old friends went up to almost two weeks without power.  Many also waited for hours to fill their gas tanks, suffered through long trips at the grocery store and were unable to return to their schools, workplaces, and businesses.  In fact, many friends had their power restored just the day before the wondrous news of the Rockefeller tree.  I imagine that going from heartache and exhaustion to civic pride was a real morale booster for the Flanders residents.

It was for me too.  Four hours north of Flanders in my upstate NY town, I had been feeling kind of glum.  And to make it worse, I felt guilty for feeling this way because I knew my troubles were minuscule compared to those trying to move past the hurricane.  When the weatherman warned of Sandy’s potential damage,  I absolutely went out and bought an extensive supply of bottled water and groceries, but Sandy’s presence in my town was nothing more than a somewhat windy rain shower.  There was no damage-- aside from what I was viewing as an ongoing catastrophe on the right side of my head.  Now in November, I had reached a plateau with my cochlear implant progress, and even more embarrassing is that in recent weeks when I struggle to hear, I have suddenly burst into tears, a totally unfortunate and unprofessional occurrence.

But how can you be sad when an 80-foot tree from your hometown will soon be the most famous Christmas tree in the world?  You can’t. Upon sharing the excitement in my own facebook status, I started daydreaming how amazing it would be for all my friends of Flanders past to come together in Manhattan to view the tree- OUR tree.  Then I took the daydream to the next level, imagining that I would sing “O Holy Night” at the tree lighting.   And then I started laughing at the thought of us all ice skating together beneath the spruce, similar to how we had skated in middle school at a place that I hold near and dear to my heart: The Hackettstown Roller Rink.

During my middle school years, I spent many Friday nights at this establishment.  For a boy-crazy pre-teen like myself, it was heaven.  Sporting a kickass bodysuit or perhaps a hooded baja shirt,  I would glide around that rink to tunes by Ace of Base and Crash Test Dummies, strategically positioning myself to grab a nearby boy for the much anticipated couple skate.  Young couples would demonstrate their love to each other when the rink dimmed the lights, skating hand in hand to “I Will Always Love You” by Whitney Houston, or “I Swear” by All-4-One.  And sometimes, we would use this opportunity to exit the rink and kiss by the video games, fulfilling all of my dreams of middle school romance.

I then started thinking about my hearing in relation to the rink.  It was certainly a noisy place with all the kids, and the loud music, and such environments are usually not my favorite locales because of the background noise.  Maybe it was because I was skating (or kissing) more than talking, or maybe my hearing was just so much better than it is now, but I can’t remember even thinking about my hearing at the roller rink—a much different situation from today, as I rarely go an hour without silently acknowledging and damning my disability.

Thanks to facebook, another wave of nostalgia washed over me. My high school boyfriend, Andrew, had liked my status about the tree from Flanders, and my thoughts shifted from middle school years at the roller rink to high school years when he and I had dated.  Andrew was in the class ahead of mine, played on the varsity soccer team and drove a sweet Grand Am.  He had earned the nickname Rico Suave, I think because he would unabashedly sing the god-awful song on demand (fortunately he did not look like Gerardo), and also, because he grew up in an Italian/Spanish household and acknowledged women with over-dramatic charm and flattery.  And I loved him.  For being 15 and 16 years old, we thought we were so mature, not knowing at the time that adult relationships rarely include constant love notes, dramatic marathon sessions on the telephone (YOU hang up first.  No, YOU hang up first!), and the hormonal drive to touch one another as often as possible.

By the time I was in high school, I had developed a greater awareness of my hearing impairment.  It didn’t interfere all that much with my teenage activities (I spent hours on the telephone, for example), but there were minor instances when I assumed my hearing was obvious to everyone, and I felt ashamed and embarrassed, and totally uncool.   As Andrew and I grew closer, I one day mustered the courage to tell him about my hearing, which of course led to a crying fit despite Andrew’s reaction of absolute indifference.  Looking back, this might have marked the first time I honestly revealed my truth to someone.   Sixteen years have passed since then, and I now recognize that any time I “come out” to someone, it never results in the person not liking me.  Still even today, even with this blog, I still fight the shame that comes with revealing my true self to people.

Some more about Andrew: I’m surprising myself by even including him in the blog.  Our breakup was just as dramatic as the relationship that preceded it, and up until meeting my husband, I mourned that Andrew and I would likely never speak again. Though I have not seen Andrew in more than a decade, he and I have started to reconnect in the last year via facebook, and it's an unforeseen joy to read posts that he is advancing in his career and look at pictures of him and his adorable wife and feel genuine happiness for the boy that shaped so much of my teenage experience.   When I started the blog, he sent me an encouraging message wishing me the best.  He also gave me his blessing to include stories of him in the blog (he was never very shy, after all) and assured me my hearing had always been a non-factor for him, a sentiment that the insecure teenager in me truly appreciates.

Cut down today and shipped to Manhattan, the heavy tree from Flanders will soon be admired by millions of people.  It will serve as a symbol of joy, and of tradition, and for many looking up at its white lights this holiday season, it will serve as a symbol of hope. Whether or not I get to view the hometown tree in Rockefeller Center, I am grateful it has already reminded me of my roots and how far I’ve come. 

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!

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!