Wednesday, January 23, 2013

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!

Sunday, January 20, 2013

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:


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

Wednesday, January 16, 2013

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.

Monday, January 14, 2013

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.

Sunday, January 13, 2013

Fitness Barbie

It's the beginning of 2013, and with a new year comes new year's resolutions, usually taking the form of masses of people running to the gym in January. I am no exception to the trend, and typically exercise vigorously post New Years Day, only to stop in February and then panic and run like a madwoman in May when bathing suit season too quickly approaches.

This year, however, I wasn't burning calories on January 2nd; instead, I had a coupon that enabled me to join a new gym on January 10th for $1.  So I refused to work out until the 10th, because I knew I would be cashing in on this sweet deal and sweating off the massive amount of wine and cookies I had ingested over the holiday season... which in my case, started pre-Halloween.

At around 4 PM on the 10th, I stepped into my soon-to-be new gym and approached a young girl in a tracksuit who appeared to be a staff member... and a Barbie doll.  I held up my coupon in triumph, excited to embark on my 2013 fitness journey for only ONE DOLLAR.
The real life Barbie Doll didn't wear this outfit... THANK GOD.

Barbie Doll was elated and quickly ushered me to her office to start paperwork.  She left the office door open, and I tried to understand her as she was explaining that I would be paying $1 today... but, um, $450 soon after.   Sure, I had been scammed by a flashy postcard promotion, but I still wanted to join.  I had procrastinated to the 10th of the month, after all.

Barbie's squeaky voice was competing with the surrounding echo of treadmills and elliptical machines, and while I was following most of what she was saying (like that she called me ma'am repeatedly... am I really old enough to be ma'am?) I'm also a much better advocate for myself than I used to be, so I stopped her and explained my hearing situation.  She asked if it would help if she shut the door and I agreed that would allow me to understand her better.

As Barbie shut the door, I guess she explained to a fellow staff member outside of her office that she was dealing with a hearing impaired customer, and news of my situation- exciting, I know- must have spread like wildfire.  Probably thirty seconds later, a staff person entered the office to retrieve some paperwork.

She looked at me and smiled in a rather phony and uncomfortable way.  "Hiiiiiii!"  she said loudly, her one word taking way too many seconds to say.

"Um, hey," I responded normally, disliking her immediately.

Another thirty seconds passed and the gym's owner decided to stop by my meeting with Barbie. 

"Hi, I hear you have some trouble hearing," he stated right away.

He could have said, "Hi, I'm the owner, and I'd like to tell you about our gym."  Or "Hi, I'm the owner.  What kind of fitness goals do you have for yourself?" But no.  I don't even know his name, but I know he knows I have trouble hearing.   

By this point, I'm fired up.  Do they make this similar introduction with say, a gay person?

As in, "Hi, I hear you're gay.  Thanks for stopping by."  What if the customer was scratching his head, and then admitted to Barbie he had a dandruff problem.  Would the owner stop by and say, "Hi, I hear you have dandruff."  NO... because it's TOTALLY UNNECESSARY.

Meanwhile, Barbie was fine.  She identified my concern, she asked what to do to make it better, and she helped by closing the door.  But I classify the follow-up from the other staff members as borderline ridiculous- actually, scratch that... it WAS ridiculous...  and certainly not the way businesspeople should address a prospective customer.  I could justify the behavior if the staff wanted to ask about how to best communicate with me, or if they were concerned about safety,  but there was no mention of any of these issues.  I'd like to think maybe they were considering these thoughts and upon hearing my response, their concerns were alleviated.

At this point, I tell the owner, "Yes, I am hearing impaired but I got a cochlear implant this year and I'm re-learning to hear.   You don't need to yell... I may ask you to repeat yourself sometimes, but for the most part, I do very well.  And I don't talk to people when I work out anyway."

And that seemed to end my conversation with the owner.  He left. 

When I told this story to my husband, he reasoned, quite simply, that this particular gym staff was not normal.  But I beg to differ.  This is not my first awkward hearing moment at a gym; in fact, there was one encounter at another gym that was even worse, and I vowed never to return... but I'll save that story for another blog post.

To make this a teachable moment, I'm asking readers to consider this thought.  When encountering people with differences- whatever it might be- try to learn how to help the person, and focus on the act of helping them, not on the difference that constitutes the help.  Having worked in human services and in education for more than a decade, I've encountered many adults with limitations of some kind, and more often than not, they KNOW what accommodations they need to live successfully.  They also know that they don't need people identifying their limitations just for the sake of saying the name of their disability out loud.  Letting someone know that YOU KNOW they have a disability does not make you a caring person.  It makes you a DUMBASS.

So, while I'd never thought I'd advise this, here I go: Be like Barbie.

Happy to help, MA'AM!

Sunday, January 6, 2013

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.