Cochlear Implant Recipient on The Doctors Show

In my previous blog post, I discussed Dawn, the recipient who was going to be featured on this week's episode of The Doctors.  The episode aired today, and while I wasn't home to watch, I found a link to Dawn's segment.  I can identify with much of her story-- the lip reading, limiting myself to small groups, and fearing prior to the surgery what "real sound" would sound like.   Here is the link to the video, and WARNING:  Have tissues ready.

This is no doubt a miraculous and beautiful story, and over the last few days, I've questioned if I've become a bit of a negative nelly, seeing videos such as these and feeling a tad more jealous than I should for people who have shared suffering similar to my own.

I've also wondered if people who are completely deaf, or at least mostly deaf, seem to do better making sense of the new CI sounds than someone like me.   For example, I know one woman who was completely deaf and within a month following her surgery she was conversing normally and talking on the phone.  I figured I had an edge having some hearing, limited as it is, but now I'm not so sure.

I truly believe I heard most sounds as a child, but I know I've slowly lost a majority of them over time, particularly in the last five years.  I'm wondering if my brain is stubbornly holding on to 23 years worth of sound memories and refusing to make the switch over to bionic hearing because I just know... I KNOW... certain electronic sounds are just not the same as natural hearing.  I'm wondering if this wouldn't be an issue if you didn't know any different.  My audiologist tells me that eventually the bionic hearing will become "the new normal," and I'd love for her to be right.  But for now, the left side hears one thing, and the right hears a completely different version.

If there are any cochlear implant recipients out there able to offer insight on this topic, I'd love to hear from you!  Please share.

Cochlear Implant Feature on The Doctors

Today I learned The Doctors show will be featuring a piece on cochlear implants this Thursday, February 7th.  According to the promo, a recipient by the name of  Dawn K. is supposed to "hear again for the first time in a long while." Dawn's story is part of the show's "Feel Good February," featuring inspirational patients who against all odds experience miracles.  The show airs at different times of day depending on your local area.

Here is the promo for The Doctors where viewers can see a preview of Dawn K.:

From what I understand, Dawn has been implanted with a Nucleus Cochlear Implant made by Cochlear-- the same model I have.  In the video, viewers see Dawn's little boy behind her, cutely asking if "she can hear him," and like magic, she understands what he says.

Sigh.  WHY was that not MY story?

I'm not suggesting that the amazing Youtube videos of CI recipients are phony, but I AM suggesting that it is not the truth for everyone going through this process.  Unfortunately, because of my experience, my skepticism has increased when I view these videos I once found so inspirational.

Remember this one?  Pretty tattooed Sarah?

This was the first video that moved me enough to leave a comment on YouTube, and it obviously hit an emotional chord with millions, becoming a viral sensation and sending Sarah to visit Ellen DeGeneres.  (Hi Ellen!  I like you too!)

Anyway, I remember sobbing watching this video, my heart filled with hope that one day soon, I would be Sarah.  And I was SO happy for her.  Then I recall feeling appalled by some of the nasty comments, suggesting the poor deaf woman was "faking it," and that she was "really crying because of how terrible the world sounded-- just a bunch of beeps and whistles."   In response I left a comment of encouragement for this woman because regardless of what truthfully happened for her,  I know I wanted the miracle to be real.  (Sarah's implant is different than mine, by the way. Her device is the Esteem Hearing Implant by Envoy Medical.)

Somewhere out there, I bet someone is considering cochlear implant surgery and hoping that like Dawn and Sarah, s/he will have the experience of being hooked up to a computer and just like that, have NORMAL HEARING.  I wonder if the person is like me, ignoring the negative comments because it's just so much better to hope they're not true.

If you're preparing for surgery, I hope you get your YouTube moment.  I really do.

But be prepared: You might not.

It might be a long journey-- weeks, months, I hate to say it, but even years.   I promise you, as you strive to hear, you'll probably find yourself LISTENING not just to sounds, but to your spirit.   And if this happens, I bet you'll find clarity in your journey, probably in more ways than you can ever imagine.

Birthday Wishes to Myself

This week I had a birthday. 

To celebrate my 32nd year of life, I had scheduled an early morning pilates class and later a one hour massage.  Fancy, right?  In between, I stopped by my favorite coffee shop, and learned a friend had paid for my cappuccino in advance.  A-maz-ing.   In the afternoon, my coworkers took me out, complete with the afternoon-shift waitresses singing to me while a single candle flickered joyfully in my almond amaretto cake.  That evening, Jeff and I slow danced in our kitchen, Claire looking on giggling and rolling her eyes as Jeff tilted me into a dip.  The day ended with Colin and Claire's performance of a "Happy Birthday" routine that for whatever reason referenced KFC.  Here it is:

If it sounds like a blissful day-- you're right, it was.  Perfect, really.  But I was surprised.

Don't get me wrong;  I suspected I'd garner a few Happy Birthday posts on my facebook wall, but it was my sincere appreciation for each moment that caught me off guard.  The gratitude and peace I felt on my birthday was in complete opposition with my thought processes from just three days earlier.

Late Sunday morning, tears stung my face for a full ninety minutes.  I clutched my stomach, not out of pain exactly, but because of a sensation I can best describe as a "heavy emptiness."  I was mourning my upcoming 32nd birthday, questioning if my post-college life had produced the dreams I aspired for myself a decade earlier.  I struggled with guilt too, intellectually seeing the blessings in my life, but emotionally, I was failing to acknowledge them.  I was lost and lonely and unable to articulate why.

A few nights earlier, in the midst of insomnia, I searched for other cochlear implant blogs.  A common thread weaved from blog to blog in that posts subsided several months post-surgery.  In some cases there were  quick messages letting readers know there wasn't much to report because "hearing continued to be so amazing!"  One woman wrote her final post eight months after surgery, reporting she was stopping her blog because "she heard everything now, regularly having phone calls and enjoying the world around her." 

I should have been happy for her, but I wasn't.  I stopped reading.  I was pissed.  I was jealous.  I'm ten months into my CI journey... TEN MONTHS.  What is wrong with me?   Why is it taking so long? What am I doing wrong?

I suspect those buried feelings bubbled to the surface during my Sunday morning crying spell.  Jeff told me to take it easy, to lessen my unattainable expectations of myself.  It was advice I've been given repeatedly but still struggle to follow.  It was MY fault, I told Jeff.  I wasn't working hard enough... I wasn't doing enough.  I WASN'T GOOD ENOUGH.  

On birthdays, some people hope for shiny presents, or maybe cocktail-infused parties surrounded by adoring friends.  Spa gift certificates, romantic dinner dates, bed and breakfast stays... these are all indulgent ways I've asked to celebrate my birth in years past.

Expensive dinner? Check.  B&B?  Check.  Spa visit?  Check.  My 30th birthday.

This year, I wanted something I've needed for a long time, something I probably need now more than ever: SELF-COMPASSION.

Think how often we say to birthday boys or girls, "Just RELAX!  It's YOUR BIRTHDAY!", or "You shouldn't have to do THAT.  It's YOUR BIRTHDAY!" 

Birthdays are often seen as "free days," a 24 hour period where we excuse ourselves from dreaded day-to-day tasks, instead focusing on the simple pleasures of feeling special, of feeling loved.  At one point on my birthday, I found myself starting a task I had not planned, wondering how I would ever accomplish it, thinking how other parts of my day would be negatively impacted by my incompetence when suddenly my mind screamed at me.

STOP!  PAM.  JUST.  STOP.  I listened. I breathed. 

I returned to the present moment.  I chose to focus on each and every loving sentiment that came my way.  I realized the world wouldn't end if I didn't check off my entire to-do list in one day.  I realized it was a choice, and an effort, to make room for love, for joy, for PEACE.  Sure, it was my birthday, my "free day," but I realized I don't require a calendar to tell me when it is justified to show myself compassion.

Following my birthday massage (another great gift I allowed myself), I caught my 32-year-old reflection in the spa mirror.   I looked relaxed, free from worry and expectations. I noticed THIS painted beneath the mirror:

And I listened.

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.