HEAR THIS: Vote for VET HELP!

Have you noticed the Aprons in Action/Home Depot logo that keeps appearing on your facebook newsfeed? 

It seems like every day someone is voting for something, so recently, I started to pay closer attention to what this meant.


It meant a lot.

The Aprons in Action contest is through The Home Depot Foundation, an organization dedicated to improving the homes and lives of U.S. military veterans and their families through volunteerism, grants and product donations.  They select a monthly winner, and based on online votes, an organization wins an incredible $25,000.   Then the winners go on to compete for first, second and third prizes-- winning up to $250,000.  It all depends on daily votes from the public.

And in April, we had a local winner!  Saratoga County Rural Preservation Company- VETHELP, is an organization based out of Ballston Spa, NY providing transitional housing for veterans and employment and training assistance.  As the $25,000 monthly winner, VETHELP was able to provide additional living space in a transitional home for homeless, female veterans who are trying to rebuild healthy lives and regain their independence.

This month, I had the opportunity to meet a professional from Saratoga County VETHELP, and she was telling me about the female veterans and their struggles in seeking employment.  We also talked about this blog, and the subject of hearing loss came up.   It's a subject veterans know very well.

According to the Department of Veterans Affairs, about 60% of deployed military service men and women have noise induced hearing loss, tinnitus (ringing in the ear), and other hearing injuries.  In fact, impairment of auditory activity and tinnitus are more likely to occur in Iraq and Afghanistan war veterans than post-traumatic stress. 

I recently talked with a veteran, and he explained that while soldiers are given ear plugs to protect their hearing, in combat, they want to keep their senses working at full capacity.  He went on to tell me that muffling sound can be a dangerous circumstance.  Upon returning home, this young man lost 60% of his hearing in one ear, and 40% in the other. 

My research also led me to an article about a retired army captain, Mark Brogan, who served in Iraq six years ago.   He had been near a suicide bomber who detonated his weapon; as a result, the captain lost his right arm, suffered from brain injury, damaged his spinal cord, and returned home with great post-traumatic stress. 

In an interview, he stated that of all his injuries, his hearing loss was the worst of his physical traumas.  It impacted almost every activity in his life.

Recently, I happened to meet a woman through an online cochlear implant support group.  The woman is not in the military.  However, she has been hearing impaired since her teenage years, and only now- at 55 years old- is she considering treating her hearing with a cochlear implant.  

The reason?  After 40 years of significant hearing loss and straining to understand those around her, she's at the point where she doesn't feel she is able to work anymore unless she does something.

I get that.

I know from personal experience how depressing it can be feeling that a disability hinders job performance.  I know how painful it is to avoid an opportunity because a circumstance beyond your control causes frustration and doubt.  I know the strength it can take just to carry on with a challenge, let alone persevere with one.

Let's face it: Work is a big part of all our lives.  "What do you do?" is one of the first questions a person asks a stranger.  How we make a living is a defining factor in all of our identities, and employment- and our ability to support ourselves and our families- highly determines how we feel about ourselves.

So, based on all I've told you: I've certainly become emotionally invested in the Aprons for Actions contest.  I want the women supported by VET HELP to not just carry on, but to rise far above the challenges they've been handed.  We can help, but it's not going to be easy. 

The big cities have a substantial lead, but I have faith in the power of social media.  Share, share, share-- with your friends, your coworkers, your cousins.  It takes 2 seconds to vote.

Log on to facebook and please vote for Saratoga VET HELP today, and every day.  Then share on Facebook, on twitter, via email.  Keep voting. 

They deserve it.

CLICK TO VOTE FOR SARATOGA VET HELP.

Simple Summer

This past week, my cochlear implant was re-mapped- AGAIN- and once more, I'm growing accustomed to different versions of sounds in each of my life's situations.  I've experienced restaurants, baseball games, car rides, and backyard fires.  In fact, the fires happened twice: once at a friend's home, and once in my own backyard. 

Backyard fires go hand in hand with living in upstate New York.  It's part of the Adirondack experience.  If you've been surrounded by the tranquil mountains in Lake George, or caught a sprawling view from the high peaks, I suspect you know the feeling of such events.   

An easy, simple peace.

Though I've lived here a decade, I've only recently come to appreciate these benefits, mainly through seeing the awe in my children's faces when they experience them. 

Growing up in northern Jersey, I was not exactly a nature-girl.  Funny looking back, because many of my friends vacationed in Lake George, and I'd question their families' reasons for purposely choosing to sleep under the stars.  From a young age, I was accustomed to vacationing in places like Atlantic City, consuming flashing lights, seafood buffets and variety shows, ending the days sleeping to the air conditioned hum of a Trump-owned hotel room.

But times have changed.  Don't get me wrong-- I love dressing fancy and pretending I belong in a VIP section.  Still, I'm in a phase in life where following over-scheduled days, I want nights to be as simple as possible. 

I don't think it gets any easier than wearing old sweatshirts, playing some music, consuming cocktails, and sitting around a backyard fire.

My backyard firepit, 2013

It's blissfully uncomplicated-- the air gone cold following a hot day, the hypnotic trance that comes with staring into orange flames.  And the best part- the story-sharing- when in the night's darkness, sudden memories emerge so hilarious the group roars in laughter, revealing the pure stupidity of the people they used to be.

But for me, with my hearing loss, these simple fires have been anything but.  With little light glowing on the faces around me, it's often hard to read lips, and also to identify who is speaking.  Background music often swallowed the conversation, and within seconds, I'd be lost.  I've felt bored, ignored, and often angry during such an easy activity. 

Easy, yes, because most people don't have to worry about hearing around the fire pit.  But also easy in that backyard fires are relaxing.  Mellow.  Enjoyable.  Of all of life's activities, THOSE are the types of experiences I want with my cochlear implant-- the moments that are seemingly so easy to others. 

I crave the simplicity.

Sometimes I have to stop myself to notice there's a difference, to consciously acknowledge things are going well. 

And that's exactly what happened this past weekend at the fires: I noticed I was relaxed.  I noticed I felt content.  I noticed, for the most part, I was following conversation.

Is it easy yet?  No.  But it's easier.  

And for now, that's the focus.  A little less complicated, and a bit more peaceful, moment by moment by moment.

Reach Out

When life gets hectic, I always have Claire.

 A placid, congenial, and helpful child, she is a soothing contrast to my ruffled feathers, reminding me with her six year old example to slow down, hug often, and smile.

This is my kid who mid-dinner will make eye contact with me, put her hand over mine, and ask, "Mommy.  How's the hearing going?"

She is genuinely concerned for others' happiness, and should I hear a beep or a whistle and Claire picks up on it, she'll nod with enthusiasm.

"Very GOOD hearing, Mommy!  You're doing good!"

It fills my heart every time.

Having grown accustomed to her steadiness, I've been thrown for a loop with her sudden change in behavior.

As of Thursday, her joyful glow has dimmed, replacing her bright-eyed laugh with tears, anxiety, and worry.  She is crying everywhere, each time offering a different explanation as to why she is so stressed.

She misses me.  She misses her Dad.  She misses her grandmother.  She misses her friend from pre-K.  School is too loud.   A friend is grumpy.  A friend was absent.  Sometimes kids at school don't behave. 

And there was that moment on Saturday, through crazy curls and streaming tears: "Mommy.  I'm just EXHAUSTED.  I'm. Burnt. Out!"

Sigh.

It's hard to watch my baby suffer with such angst.  Considering the varied explanations, I'm lost as to what momentarily stole her sunshine.  I've talked with her teachers, with her babysitter, with our family, and we all have our theories as to what is weighing so heavily on Claire's little shoulders.  In the end, we each offer the same conclusion: It's just a phase.

And I believe that.

Still, I found myself in a text exchange with her teacher, offering this insight: "I feel for her always trying to be the good girl.  She feels this tremendous responsibility not to let others down."

Before I pressed SEND, I paused.

I might as well have been talking about me-- always trying to make sure I'm not an inconvenience or a disappointment.  I thought of how I put pressure on myself to make a strong first impression, work harder so others work easier, possibly overcompensating because I don't want my struggles to be spotlighted. 

It's easy to feel lost when you're alone, and maybe Claire started to realize this. Yesterday, she offered an idea to remedy her worries:

When she gets sad, her big brother could comfort her.

Interesting.

Don't get me wrong-- I love my son, and he has many wonderful qualities.  Displaying empathy, however, is not his strong suit.  He's a cool nine year old, a jock, a BOY... you think he wants to kneel down and wipe the tears of his little sister, especially in front of the other kids at school? 

Still, I believed in him, and saw Claire's proposal as a leadership opportunity.

Colin, help your sister.  Be there for her.  Comfort her.  First and foremost, have her back.

This morning I dropped the kids off to school and as they walked toward the entrance, the signs were there.  Claire's eyes grew watery; her shoulders began shaking.

I watched her reach out for her brother; he acted like her hand wasn't there.  She tried again; he looked away.  On Claire's third attempt, I watched as he reached down and grabbed her small kindergarten hand. 

With his back to me, he couldn't see how proud I was.

Sometimes we need certain someones to have our backs.  I don't have a big brother, but I have several fill-ins for the role.  These men (and women) have become mentors in my life,  allowing me to be my most vulnerable self and accepting me just the same.  They encourage me to see challenges as opportunities, to "stay the course," to relish in adversity.   It can be tough to put ourselves out there and admit confusion as to what to do next, but I've learned it's way tougher to get through those moments alone. 

Claire will be fine.  I will be fine.  We are lucky to have the strength to reach out to others, to embrace their wisdom, and to learn from their journeys.

We'll pick ourselves up and move forward, stronger and brighter than before.

No Mind Over Matter

 A friend texted me this week: What is going on with YOU?

Oh, lots.  Lots & lots & lots.

And this makes it all the more challenging to share.

Instead of one simple explanation for this week, several experiences have arisen, each one critical in my quest to find clarity, both in sound and in life.

The events of this week are filed into a multitude of categories, with headings such as T-Ball Coaching is No Joke, Hearing is Hard, My Dreams Are Coming True, and I Hate My Life.

Last weekend I overheard Jeff telling someone that living with me is like being on a constant roller coaster ride.  Was I offended?  Not in the least... he's 100% accurate.  And this week another loopy segment was added to the track.  We're still on the ride, still hanging on.

Let's start with Monday when I traveled to Albany.

It was a remapping appointment with my audiologist and I was feeling optimistic.  At the last mapping, one of the 24 electrodes in the implant had been turned off.  We were on to something; the clarity improved so greatly (Remember me hearing the geese?  Pretending I was Norah Jones, singing in bathroom?)  Then without warning, eight days later my comprehension seemed to drop.  A part of me believed my brain had acclimated so fast to the new program that it was all the more ready for some additional advanced mapping, a chance to be even clearer than before. 

As I said to Dr. Sharon, "I'll stay as long as it takes.  I'm in it to win it."

She smiled kindly, but also acknowledged I typically grow fatigued after more than an hour of testing and mapping.   Sadly, this observation (damn it) is the truth.

It's funny because I'm just sitting there, but mapping is exhausting.  Trying to pinpoint which beeps are fuzzy or quieter than the others, trying to find the right descriptors to explain the quality of sound, trying to comprehend... there comes a point when my brain withdraws and closes shop for the day.  It's not a "mind over matter" mission either, like when you're out for a run and you're exhausted, but still manage to convince your legs to run a final lap.

This IS my mind.  When it shuts its door, there's little I can do but take a rest and wait, and let's be honest: I'm not good at that.

Additionally, Monday's mapping began on a sour note.  We started discussing telecoils, and soon we were experimenting with cell phones.  Then I grew frustrated not being able to hear on the phone and minutes into the appointment, I'm taking deep breaths so I don't start bawling in the office.

Once I put a stop to the telecoiling, we got to mapping, once again abandoning the modern day procedure (where electrodes are adjusted globally and all fall into their places) and instead, we tested electrodes one by one, testing my comfort level with each and every beep.

Dr. Sharon opted to try this because in many instances I "feel" sound as opposed to "hearing" it.  It's not pleasant.  It can best be described as a flick or a quick zap to my head around the implanted area, especially when the noise presented is high pitched or especially loud.

By the end of the test, Sharon suggested we try turning more electrodes off, this time a total of four.

When the new program was turned back on, my first reaction was that my cochlear ear seemed to be taking over in comprehending, a positive considering I still so heavily rely on my hearing impaired ear.  And while Sharon's voice was still mostly robotic, there was just a hint of human there letting me know she was female.

This might sound funny to those who hear, but even a year in, I still can't differentiate between male and female voices with just my CI ear.  So I felt we were on to something.

But in this roller coaster ride, the results did not transfer over into the real world.   After leaving the office, I noticed a constant presence of background noise, a crackle of sorts, even in complete silence.  Later, with the implant off, the noise stayed in my brain.  Tinnitus was back, this time presenting itself as whimpering puppy.  All.  night.  long.  

Plus I had noticed I couldn't understand my kids.   I couldn't understand my t-ball players.

The next day, I sat straining during a meeting.  After sixty minutes, fatigue smacked me in the face like never before.

I could feel it.  I was going to cry.  I tried my best to avoid eye contact with everyone at the table, to go inside my head and mentally remove myself from the conversation.  I had to stop trying to comprehend or I would shut down.

After the meeting, I needed a half hour sitting on a park bench staring at tulips in order to recover.

Not a bad view, though a rather conflicting image considering by not-so-cheerful disposition

Later, I tried to bounce back. I had to make it work.  I tried rehabilitation exercises, listening to a carpet cleaning radio ad over and over and over again and not making out the words.

There was nothing I could do about it-- no "mind over matter self-talk" that would make it any better.

And it pissed me off. 

I'm an emotional person, but not necessarily an angry one, and certainly not a violent one.  In fact, a friend once tried to take a photo of me where I used my best "mean face" or "tough face." The results were laughable.

But this time was different.  My teeth were clenching, my insides trembling.  I wanted to throw something.  Break something. Yell at no one in particular using the most profane sentences I could conceptualize.

Lord, I am TIRED.  SICK of the hope, the disappointment, the optimism, the depression.

Get me off the ride.  I am done.

Except, I'm not.  I have my family, my work, my future.

And so, by the grace of God, I keep picking myself up and starting again.

And as crazy-busy as my life can be, it's my overcrowded mental file cabinet that keeps me going.  The fact that I could sit and cry, but can't...  I have a t-ball game.  Or when I feel like punching the wall, and throwing things, but can't... someone, somewhere is acknowledging me for my work.

All life is a roller coaster.  Mine just happens to be a particularly long and bumpy ride.

But I'm still holding on, looking ahead, knowing one day I'll come to a stop.  Hopefully then, I'll wipe the tears from my eyes, and look appreciatively at those who shared the ride with me.  I hope we laugh.

Monday Misunderstanding 4: Communication Skills Suck When You're Hearing Impaired

Today, I received praise from my audiologist. 

In terms of "testing" my hearing, Dr. Sharon decided to call from her cell phone to mine, allowing me to try out the telecoil function on my cochlear implant processor. Telecoil technology can better separate background noise from the sounds someone wants to hear, such as a TV at a distance, or a voice on the telephone.  This pairing of telecoil technology with cochlear implants (or hearing aids) bridges the physical space between a person and the sound source.

I've tried the telecoil a few times during rehab exercises and work conference calls, but each time with limited success.   That trend continued today. 

I struggled.  I could feel the frustrated tears rise to the surface, my inner dialogue growing more defiant by the second.

I don't give a crap about the telecoil right now.  I just want to be able to understand my kids in the car.  My coworkers when they speak to me.  A friend in a restaurant.

Quickly, I said, "I don't want to do this anymore.  Let's move on."

Each time I meet with my audiologist, I get nervous about the time. 

Maybe you identify if you've ever had a pressing health concern and you finally catch that in-demand specialist.  You want to make the best use of that face time and today, I didn't go in with high hopes of telecoiling.

My expectations have lowered significantly.  I just want better in-person speech clarity.

So I did not get praise for being patient and kind during the telecoil experiment.   A polite hear-er with the telecoil, I am not. 

However, Dr. Sharon called me a GOOD LISTENER.  A GOOD COMMUNICATOR.

I was a bit taken aback by her feedback, maybe because I feel so tongue-tied when it comes to explaining how I hear to her.  She often spends way over an hour with me, but still, it flies by, and  that time to me is precious.  I want to ensure I'm communicating as best I can to achieve optimal mapping. 

Here are some of my descriptions I've used when describing CI hearing thus far (I'd love to hear what others say):

• For a few months, each time someone said "Ch" or "Sh," it felt like the person was flicking me in the head.  As you can imagine, I felt that way often.
• In the last month, each time Claire clapped her hands (and this is often, as she opts to dance place to place instead of walk), it felt like once again, I was getting head-flicked.  No fun.
• I say sometimes it's like a pounding headache, but only for a few seconds in the implant location.
• I use phrases like "voices sound like they have two layers" and "there are holes in sentences"
• I use words like "echo" and "squeak" and "static" and "robotic"

Does this accurately convey my experiences?  Sometimes, I'm not sure. 

But Dr. Sharon assured me I'm a good listener.  After conducting a comfort test within each of the CI's electrodes, one by one, gaining my feedback after each and every beep, she said I'm "in tune" with what I'm hearing.

I believe many hearing impaired people are, ironically, good communicators.  In my case, I know I'm good at reading visual cues.  Body language, facial expressions, where a person looks when speaking-- all of these factors have aided my intuitive capabilities in the workplace and beyond.  I also double-check a lot; I rephrase and repeat.  I'm all the more conscientious and want to be sure I understand completely.  I pay attention (it's exhausting, at times-- but I still do it) and I believe this brings better results in my life- both at home and in my professions- and also makes other people feel acknowledged and appreciated.

So am I a good listener with my new mapping?  Only time will tell.  But it's doctor-approved that I'm hearing impaired and my communication skills don't suck.

What about you?  How do you communicate successfully with doctors?  With hearing professionals?

Four Turtles

Today I faced a long break between appointments.  

The morning had me scheduled with my nonprofit job, the afternoon with writing, and the evening with my new t-ball gig.

Of my four paying jobs- nonprofit, tutor, teacher, writer- I was only obligated to two today.  I questioned if I should get a manicure, maybe an eyebrow wax.  I made friends with a wannabe celesbian on twitter and thus learned the word celesbian.  I made a kickass salad of arugula and goat cheese.  I thought about vacuuming, decided against it and considered yard work.  But that wasn't happening.  I was lost in this break.

 

I meant to write, and more than just a tweet.  You know, a freelance assignment that actually pays me.

But I couldn't commit.  I couldn't see how to pinpoint the energy.

It was a beautiful afternoon and quite depressing of me to Facebook to no one.  I ventured outside, eager to run as I usually do, but my brain was heavy.  I needed to be present, and I knew attention to detail would fail me while sprinting.  

I would walk.

Trekking down my small town street, I turned toward the local park.  I passed just-hanging-on houses, the paint mostly chipped away on their porch steps, the lawn decor faded from having never been removed during snowstorms.

Those houses had been through a lot.

Occasionally an old man would drive by, winning staring contests with me before going about his way.

I looked at the overflowing playground trash cans, the space bordered with cigarette butts and crushed soda bottles.  I felt the familiar mix of anger and sadness that arises when I question what I'm doing here, if it will ever get better.

I took a different route than usual.  

I'm not a fan of woods, yet I stood at the mouth of a stream.

In the water sat a branch, and just barely, I realized something more was there.  A turtle.  Wait-- FOUR turtles, MY turtles.  

They were waiting for me but what exactly for? 

Were they symbolic somehow of Jeff, Colin, Claire and me?  Was one a writer, a tutor, a teacher?  Do you blog in your spare time, turtle-girl?  Why are you here?

Despite their reputations, three of them must have startled in my presence, scurrying off with such speed, I immediately lost sight of them.

But one- no doubt the mama- remained perched on her log.  She wasn't scared; she didn't flinch.  I then wondered if she could hear.

We stared at each other, She-turtle and me, meeting each other exactly when we are supposed to, on an unplanned walk on a sunny day.

She was telling me something: quietly, gently, and with dignity.

Stay the course, girl.  Slow and steady, stay the course.

Then when it damn well pleased her, Mama Turtle joined the group in the water.

She decided she was ready, and she dove right in.

 

 

Monday Misunderstanding 3: We Try to Hide Our Disabilities

It was less than three weeks ago when my cochlear implant processor was revealed for the first time.  I posed for a press photograph, hesitantly and very vulnerably, to the wide readership of the The Glens Falls Chronicle.

In the moment Cathy Dede, the editor, took my picture, I attempted to ignore my insecurities by making a joke: "I guess I should have put puff paint on it this morning so you could see it better against my hair."

She made a comment, seeming to understand my processor was brown to blend in with my hair.

I immediately nodded, agreeing CI recipients choose models closest to their hair colors in attempts to camouflage their circumstances. I then realized I was acting as a spokesperson for the CI world, and a dishonest one too.    In talking about people, I was referring to me.

Through the tremendous gift of the internet, I've come in contact with many cochlear implant recipients throughout the globe.  Social media gives access to photographs, and at times, I've stared at others' images filled with a combination of awe and jealousy.

Some people actually wear their processors like prized medals of honor.  Some people actually FLAUNT them.

Before my surgery, I remember clicking through the facebook photos of a CI recipient. She was a bridesmaid and my jaw dropped when I saw she had worn her hair in a... wait for it... UP-DO.  Unbelievable!  She had unabashedly CHOSEN to let her processor BE SEEN.

I thought, how could she NOT care?

Days before my surgery, I was still coming to terms with the fact (in my mind) I would NEVER be able to wear a ponytail again.  To me, this was a price I'd have to pay to be able to hear, an inconvenience surely, but a necessary step for me to move on in life.

I KNOW.  And I'd be lying if I said I didn't feel a bit ridiculous, and also ashamed, in admitting this.

I can't help but think of other proud CI wearers reading this, shaking their heads at me in disgust.  I picture them cursing me out at their computers and smart phones, telling me to get my head out of my vain ass and get my damn priorities straight.

What's worse is I agree with them.  And though I've come a long, long way, I still worry my processor conveys a negative message: that something is wrong with me, that I'm not pretty, that I'm not normal. 

Even when I was first activated- in my AUDIOLOGIST'S office, no less- I hesitated trying to attach my processor to my head unless I knew it was concealed.  I had never worn a hearing aid, making it all the more difficult as I struggled to attach the magnet and earpiece.  Just as I started complaining I would never get the hang of it, my audiologist firmly advised me to stop worrying so much about trying to place it perfectly beneath my hair.

I felt stupid. I felt exposed. What was wrong with me? In front of my AUDIOLOGIST, who more than ANYONE knew the truth of my circumstances, I still made attempts to hide.

I'm writing this because as much as I've told people throughout the years that my vanity didn't  impact my decision to seek hearing help, that's not the complete truth.  Even the hearing aid companies tell us through marketing that smaller and hidden is better. Each time I explored options, I was told the sleeker, in-the-ear models wouldn't serve me, leaving me disappointed and hesitant to move forward with treatment. That's not the ONLY reason I didn't end up with hearing aids (they didn't help my level of loss), but still, appearance was a factor.  I imagine someone out there can identify. If you're that person, let's talk about how much this barrier has affected our lives.

For years, in my warped view (and maybe in yours too) NO ONE would ever want their hearing aids or CI (or any other assistive device for that matter) on display unless forced to do so.

But I'm wrong.  And I'm glad.

According to my audiologist, one of her patients, a short-haired, middle-aged male, has a right processor in one color, and a left processor in a totally different shade, together representing the color combo of his favorite sports team.

Some personalization options for cochlear implants.  Original Source: Cochlear Americas

One of my facebook friends, a professor and fellow blogger, decorates her CI processor per season, adorning her head with flowers or butterflies or whatever else grants her self expression.

Check out the blog "Hearing Elmo," about living with hearing loss and other invisible disabilities at http://hearingelmo.wordpress.com/

Even a quick internet search led me to a site in which people share ideas to "bring a little bling" to hearing aids, as shown here in this photo of a child with a cochlear implant (My 6 year old, by the way, would LOVE to wear that).

http://lateonsethearingloss.org/2012/09/19/5-ways-to-bring-a-little-bling-to-your-childs-hearing-aids-and-cis/

Friends: This Monday misunderstanding is all mine, that if we are "impaired" in some way, whatever it is, surely we want to hide it.

As photos of hearing aid bling prove, this isn't always the case nor should it be.

Though I doubt you'll see me bedazzling my processor in the near future (just not my style), the loud-and-proud folks teach me lessons in self-acceptance, give me hope, and also make me smile.

Why? They're just being themselves.

If you didn't care what people thought of you, what would YOU reveal?

Monday Misunderstanding 2- I Don't Know Sign Language

Are you surprised my almost-6 year old knows more sign language than I do?

It's true.  During 2012, one of Claire's crazes was watching Signing Time DVDs on repeat, and sure enough, she grew quite skilled at signing various types of snack food and emotions.

I caught enough of the Silly Pizza Song (played OVER and OVER and OVER again) so that I could sign "apple" and "cheese."  Aside from some sloppy finger spelling, that's really the extent of my signing skills.  Not that I'm content with this; learning American Sign Language (ASL) is one of my lifetime goals.  I've found this is surprising to people; many assume I know it already.

The first time someone attempted to communicate with me via sign language was when Colin was a baby.   We were visiting the pediatrician's office, and in what still remains a mystery, someone decided to put a note in Colin's medical file.

It read something like, "MOM IS HEARING IMPAIRED!  SHE READS LIPS!"

I suspected something was off after the nurse spoke super-loud and slowly to me, exaggerating each and every word.  It was awkward.

When she left the room, I grabbed Colin's file, and sure enough-- there on Page 1 was evidence as to why the staff was suddenly acting so bizarre.

I WAS FURIOUS.

Granted, this was at a time when I fought to hide my hearing loss, so if anyone revealed it, I was immediately angered.  Sure-- the note spoke the truth, and I imagine whoever placed it there was only trying to make medical visits easier for my son and me.  Still, this was all done behind my back; no one asked for my input as to how I best communicate.

It made me feel judged, small, and violated.

I remember the doctor coming into the room.  At first we chatted for a good sixty seconds as we always had.  Then she opened Colin's file.

The pediatrician was in mid-sentence when that handwritten note caught her eye.  Now, remember:  I'm talking with her with no issue prior to the note discovery.  Still, when she saw that note, the whole energy of the room changed.  She looked nervous, she paused to think, and started hesitantly waving her fingers at me in what I assume was her best attempt at ASL.

"Um, what are you doing?  I don't know sign language," I said.

She looked embarrassed; I was embarrassed, and all because of the assumptions that come with a disability label.

The expectation that I know ASL has followed me ever since.

In one of my jobs, I work as a writing tutor at a community college.  Several years ago, ASL classes were introduced there, and to great fanfare.  The students LOVE it, and it's wonderful seeing the  campus developing a deeper appreciation and knowledge of the Deaf community.  In fact, there is an upcoming theatrical performance at the college- Children of a Lesser God- in which the performers are using both spoken English and ASL. 

A professor at the college recently approached me, figuring I must be super-excited to watch the sign language in action.  I do plan to attend the show, but again, I don't know much about Deaf culture.  I didn't grow up Deaf.

Several times I've disappointed students.   Faculty have referred them to me, indicating I can help with ASL practice.  What a waste of time this is for the student!

I don't know sign language.

Since getting my cochlear implant, the assumption I can sign is even more apparent.   

I was recently asked if I could serve as an interpreter for a funeral home.  As much as I would LOVE to do that, I can't.  I don't know how.

One of the funniest reactions I've had regarding my inability to sign came from a colleague I've known for years.  Recently we were out for drinks, when I left our table momentarily. She then made some indication to my husband about how I signed before my CI surgery.  I guess she was shocked when Jeff told her there was no ASL in the Fisher household.

Again, I've known this woman for awhile.  And while maybe I can be expressive, or talk with my hands, there is not a single time in my life I have attempted to communicate with someone using ASL (unless the middle finger counts).  It makes me laugh how people all the sudden think I communicated in sign language prior to my surgery.

Where were you guys for the last 31 years of my life? 

So today's Monday Misunderstanding: Not all hearing impaired people know ASL.  Not all cochlear implant recipients know ASL.

But I will tell you, seeing videos like this makes me all the more anxious to learn. 

Worth noting: Though this person totally resembles my brother-in-law Aaron, it's not him.  Nevertheless, I bet Aaron's theatrical abilities would serve him well in ASL.

Also worth noting: I've been trying for months to incorporate a Justin Timberlake song into one of my posts.  Thank you, Aaron-look alike for this incredible YouTube service. 

My Cochlear Implant Birthday- PLAY BALL!

One year ago today, I took a chance.   On April 18, 2012, I invited a surgeon to cut into my skull, wire a mini computer through my cochlea, and turn me into a bionic woman.

The famous jock strap picture: April 18, 2012

So here we are: ONE WHOLE YEAR LATER after my cochlear implant surgery.

No doubt this has been a challenging twelve months.  My expectations have battled with reality, and often, I find myself grumpily focusing on what I can't do versus what I can.

Fortunately, with the new mapping in March, I have to acknowledge that my "I can hear these sounds" list is getting longer. 

Just yesterday, in my office, I heard a phone ringing softly.  I listened wondering where the sound was coming from, and sat marveled as I heard a colleague across the room answer.  All of this without looking too!   A month ago, I couldn't even identify the phone ringing on the desk NEXT to me, so to recognize a phone from ACROSS THE ROOM, and then to identify the person speaking as the correct coworker-- well, it's really quite amazing.  It's worth a celebration.

Through the internet, I see many cochlear implant recipients acknowledge their "CI birthdays," often  creating cakes designed to look like processors. 

Me?  I'm not that into cake, but I am marking the occasion with an activity quite a stretch from my normal routines.

You ready? 

I'm coaching Little League.

I'll pause now so you can finish laughing.  Okay, let's continue. 

Since telling people of my new role, I've received a wide range of reaction.  Even Colin was like, "MOMMY is going to COACH?!"  The most common response is some surprised chuckling and then comments like, "Are you going to coach in your leopard print heels?"  

I get it.   I'm not the sportiest of people, but I did play softball- sometimes- as a kid.

In eighth grade, I remember signing up to play, my biggest motivating factor being that boys would often watch the games, and I might be able to flirt with them between innings.  This was also the same year I posed for my team picture, my glove on my hip, while holding the bat like a vaudeville performer's cane.  What can I say?  I was more theatrical at heart.

Then freshman year I decided to play again, mostly because I thought it was the cool thing to do. Still, I had no athletic confidence.  When the coach started me at second base our very first game, I quickly realized I was WAY over my head with high school athletics.  This was no little league, and I was scared. 

And so, I often hid behind the bleachers so I wouldn't have to play.  PATHETIC. 

To compensate, I'd write amusing songs about the team, and perform them on the bus.   Regardless of how I played, I was happy to accept the "Most Team Spirit" award at the end-of-the-year banquet. 

As an adult- I was probably about 26 years old- a friend recruited me to an adult softball league, the team consisting mostly of our coworkers.  I hesitated to play, but my friend assured me it was not a competitive league and many participants were first-time players.  So reluctantly I said okay, with the understanding I would play catcher as to not have to worry about risking line drives to my head. 

Before one of our games, an obnoxious know-it-all husband decided he would authorize himself as "the coach."  I found him SO annoying.  In hindsight, I realize there might have been more as to why he grated on my nerves.

I couldn't hear him.  In fact, I couldn't hear anybody.  During warm ups, I didn't know what people were telling me to do, and I was always anxious I wasn't following the instructions.  Not only that, but I had a constant fear someone would yell to me if a ball was speeding toward my head, and I would miss the warning and be knocked out.

You're Killing Me, Smalls!

You know that scene in The Sandlot?  Where Smalls gets invited to play with the neighborhood kids, gets the ball in the outfield, pauses, and then runs the ball in and hands it to Benny?  Well, that's what I've always wanted to do-- not because I couldn't throw the ball, but because it would place me face to face with a teammate and then I could hear the person. 

My whole life, my hearing loss has held me back.  It might not seem that way, but I know it has.  If I did something on my own, and I failed... well, that's one thing.  But from childhood on, I couldn't bear the fact of somehow missing something and screwing up a play for a team eager to win.  And so, I either coped in my own unique Pam way (by say, writing songs behind the bleachers) or in most cases, avoiding a TEAM activity altogether. 

So back to today, and my decision to coach.

The truth is that the little league program is highly important to my son, now on his fifth year playing.  It also has tremendous worth to my husband, who spent countless hours as a kid doing anything baseball-related, eventually pitching for his high school team.  Thoughts of our small town's little league is often paired with heartwarming nostalgia as townspeople recall memories of goodhearted families coming together every spring so their kids could discover the magic of baseball. 

But times have changed. 

Over the past five years, I've often sat frustrated on the bleachers watching overweight kids stuff their faces with junk food in the dugout, while their coaches curse in the faces of teenage umpires, while the spectators vehemently SCREAM at kids and coaches from the sidelines, while many players in need of someone believing in them were excused time and again for disrespecting their coaches, their opponents, and the game.

I could remain on those bleachers this year, OR I could find the confidence within myself- hearing impaired or not-  to get out there and do whatever I can to make a difference. 

And so I'm coaching Claire's team (and yes, it's t-ball, and yes, Jeff is doing it with me).

Before this year, I would have NEVER done this.  But again, times have changed, and from my surgery until now, I feel more equipped to take a step or two out of my comfort zone.

As the new t-ball coach, I may not hear or understand everything.  I won't be perfect, but I'll try my best.  My hope is I inspire my kids to do the same.

Today, on my CI birthday, I'm taking a chance and trying something new.   And if this year has taught me anything, I know: I'll be okay.

Monday Misunderstanding 1 - Hearing Loss Does Not Mean Silence

Having lived with hearing loss for most of my life, I see how often it is misunderstood.   If you're a person who is hard of hearing, I bet you have stories too-- tales of people who make a remark or perform an action that show, despite good intentions, some people JUST DON'T GET IT.  I used to get super frustrated by such people, but I've learned it's not always their fault.  They don't fully understand, or necessarily realize they're being offensive, and for good reason.  Hearing loss is confusing, complex, individualized, embarrassing and often awkward to address. 

But I'm blessed to have a forum to talk about it.  Welcome to the first post of a series I call "Monday Misunderstandings." As the title suggests, on Mondays I'll be writing about some of the misconceptions I've come across since talking openly about my hearing loss.   I hope you find it entertaining as well as educational.   As always, please let me know what you think!  

The Chronicle Article: My Big Reveal

In the last year, my blog has led to various writing opportunities, most recently being asked by The Glens Falls Chronicle to share my story.

My Chronicle Article, April 11, 2013

Aside from reading The Chronicle every Thursday (I love it), once upon a time I happened to interview there.  As I neared the end of a stay-at-home stint with my daughter, The Chronicle happened to advertise for a writing position.  Loving writing, and loving The Chronicle, I threw my hat in the ring.  Soon after, I learned I was a finalist.

The interview process was unlike any other I've been through.  It was intense, but also an accurate reflection, I believe, of The Chronicle's standards for high quality.  As a finalist, I was fortunate to meet Mark Frost, passionate founder and editor of the paper, and Cathy DeDe, The Chronicle's energetic and talented managing editor.  As I listened to Mark and Cathy during the interview (as best I could anyway-- it was during the peak of my hearing troubles), I remember thinking regardless of the outcome, applying had been worth it.   Mark Frost told me face-to-face I was a good writer, and it meant the world to me.

Say what you want about Mr. Frost's opinions-- Lord knows I've shaken my head in disagreement with much of his political commentary.  Regardless, he's an incredible entrepreneur, a compelling entertainer, and in meeting him, I learned of the tremendous responsibility he sees in sharing his love for our community with others.   So, I'm a fan.  And when someone you admire commends you... well, it's awesome.  The Chronicle interview was a real highlight for me.

Yesterday, I had my chance to write for The Chronicle.

As you probably know, I didn't end up getting the staff writer job, but since then, I've run into Chronicle staff, providing brief updates of my professional circumstances, as well as where I'm at in my hearing journey.  In January, Mark questioned if I'd be willing to share my hearing story.

The opportunity to write for Northern NY's leading paper had come like so much else that appears in my life: In time. With patience.  And I acknowledge, at the moment that proved most appropriate for me.

The second page.  Nice to have my family included!

It was exciting, of course-- a chance to share my story with a larger audience because selfishly, each time I share, I receive comments and feedback, usually in the form of support.  Having gone 22 years keeping my  hearing loss struggles to myself, I can't justifiably explain how healing it is to continuously peel back the shameful layers I've gripped tightly for so long. Time and again, I go through the motions of feeling compelled to share, worrying what people will think, hesitating, sharing anyway, and letting out a big sigh of relief when  it's over and people identify and/or offer support.  Each time, the message becomes more believable:  Pam, you're okay.

On Monday I received an email from The Chronicle.  In addition to the article, they wanted accompanying photos-- not just of me, but also specifically my cochlear implant processor.   Yes, the robotic part of me.  The hearing aid-like device hooked behind my ear, attached to a wire connecting to a nipple-resembling magnetized circle, all carefully hidden under my long, wavy hair.

Oh.  You want a picture THAT?

I admitted I didn't have any photos showing my processor, nor have I ever presented such images to my blog audience.  To get the photo, Cathy Dede would have to take it .

When we met, she must have sensed my hesitation because she assured me I could back out if I wanted to.  But you know what?

Screw it.  It was time.

Ironically, even though I write about my implant, appearance-wise, I've continued my efforts to keep my invisible disability just that: INVISIBLE.   I've continued to ensure I reveal my truth on my own terms, as opposed to someone else making assumptions of my capabilities because they've caught a peek at my processor.  I still worry how other people might view me.  I still want to carefully control my first impression with others.   No doubt, revealing my processor- FOR ME- was a vulnerable experience.

REVEALED.

But as the photo evidence shows, I took a deep breath, pushed aside my hair, and revealed.  Peeling off another layer, that processor photo was an important milestone in my healing journey.  Thank you, Chronicle, for facilitating it.

Because once again, I shared.  Once again, I'm okay.

Clarity's Disappearing Act

Since I last wrote, several people have inquired, "So... how's the hearing?"

It's been an interesting two weeks.

I noticed a pretty significant and positive difference following my last mapping appointment.

Day 6 with my new program, on Easter Sunday.  It was a happy day; my family realized I was responding to people without directly looking at them.

I found myself understanding people without having to look at them--not everything, but at least some words from time to time.

I found that high pitch sounds were recognizable, that with each "shh" and "chh," it no longer felt like someone was flicking the side of my skull with a rubber band (a very welcome change, indeed).

One of the best developments, appearing almost overnight, was the shift in my energy.  Since my surgery, I've been very bitter and frustrated to not experience wanting to jubilantly jump out of bed in the morning; in fact, this year I have needed more sleep and "rest time" than ever before, and frankly, it annoys the hell out of me.  I have life dreams to accomplish, after all!

Prior to surgery, other recipients and audiologists had told my husband and me that once I  had my CI, "Jeff would have trouble keeping up with me."  After years of exhaustion trying to hear, I prayed for some relief.  I've yearned to wake up effortlessly, ready to seize my day free from worrying about situations that would require increased concentration or effort to understand.  Following the latest mapping, I found I was less tired, waking up easier and feeling more like myself than I have in years.  It was AWESOME.  Of all the changes, THIS was hugely gratifying to me.

I also seemed to be hearing much better in noisier situations; in fact, during an afternoon at a restaurant, I realized how well I was comprehending despite the background chatter surrounding my table on all sides.  It was that day- one week following my mapping appointment- that I told my coworkers how happy I was with my new hearing, how well I was understanding people,  and that certainly, I was well on my way to bigger cochlear implant achievements.

Then just like that, the clarity disappeared.

At first, I honestly thought I was wearing the wrong processor.  I have two; one contains my previous program (in case I didn't end up liking my new program), and one contains the new and improved version.  The quality of my hearing had returned to such a muddled state, I honestly believed I had mistakenly been wearing the wrong one.  I was surprised to realize I wasn't.

Then I figured I must just be having a couple of bad days.  Just like sometimes our pants don't fit as well as they should, or there's no other choice for our hair than to be gathered in a ponytail, I just figured I was having a bad hearing day or two.  But the days turned into a week.  Something else seems to be going on. 

There are brief moments of clearer speech recognition, but those moments are overshadowed by the exhaustion I'm feeling once again to focus on the people speaking to me.  Along with the drop in clarity has been a loss, once again, of my energy.  It's a setback that has hit me far too quickly, and while I could curse and kick things and drink a lot of martinis, I haven't even given thought to such behavior because there must be an explanation.  There has to be.

Today I'm still baffled by how I could have one week of great hearing and then such a sudden change.  Is it my remote control?  Have I so quickly adjusted to my new program that I already need some tweaking?  Was I too cocky about my new hearing, and is God putting me back in my place?  Is someone working on my program from afar, say via "the cloud," and messing with my head?

I honestly don't know, but I'll be investigating with my audiologist to find answers.

So how's the hearing?  Unpredictable.  But in many ways, so is this journey.  I've found in the moments I least expect, I may not be hearing, but I'm listening.   In this confusing time, I remain open to receiving some lesson- whatever it is.  I'll pick myself up and start again.

My Fresh Start

I heard the birds this morning.

As I rushed out my front door, I paused.  I heard the sound I recalled from my childhood.  I then looked to the sky.  

"Squack-a, squack-a, squack-a."

There above me, a beautiful V formation of birds returned North, hopefully bringing with them the warmth and sunshine of wherever they last were.  I certainly know a warmth came over me. 

In the past few months, I've known birds are overhead because I could hear beeps.  From process of elimination, I could figure out it was birds, but to be honest, my brain heard similar sounds for children, sirens, cars driving by.  I've had awareness, but no clarity.

But today it was BIRDS as I knew BIRDS TO BE.  I could have wept.

Just yesterday, I couldn't hear that.  Now I can.  It's truly remarkable.

During my Thursday night ugly-cry, I mourned I couldn't hear such sounds.  And I was TIRED.  Tired of being optimistic, tired of withdrawing instead of participating, and most of all, I was tired of being TIRED.  In the past eleven months, hearing has been so much work.  I felt cheated, and I finally let my anger take hold of me. 

I wrote my last post on my phone, sitting in my car in a Stewart's parking lot, tears streaming down my face.  It was one of the fastest posts I have ever written, emotion spewing out of me as I released frustrations into the blog.  Following the post, I received many encouraging messages that not only reminded me of my blessings, but made a huge difference in the renewal of my strength.  A dear and wise friend wrote this to me:

"One thing I had to learn was that without the pity parties once in a while it is hard to stay strong and move on to Plan B. You have to feel it once in a while. I mean REALLY FEEL IT.  It will release so much of what you may not want to face but unfortunately have to. You are going to need days like this to appreciate the wonderful things I am certain will come your way because YOU will make it happen."

She claimed my words went straight to her heart, and I could not have been more appreciative of the reciprocation of her wisdom.  Thursday Night Ugly Cry Incident was the catalyst needed to embark on the next chapter, and when it was over, I also sensed I was about to embark on a fresh start in my journey.

The new chapter began yesterday morning as Jeff and I traveled to my mapping appointment.  The audiologist, Sharon, and I had emailed back and forth prior to yesterday so she knew of my struggles.  She had sent my files to Cochlear (my implant manufacturer) to see if their field specialist had any insight as to why the program was not giving me clarity.  Sharon had previously emailed me warning that in some cases, recipients might just get awareness (i.e., beeps for birds), but not clarity.

I refused to believe I was one of those people.  I did not sign up to hear the world in beeps.

At the start of the appointment, Sharon indicated all of the tests she wanted to conduct, promising that she "would work me hard."  While it is often the case for an audiologist to make an adjustment on an electrode and for the other electrodes to automatically follow suit, Sharon said this was the more modern procedure for mapping, and that perhaps, we needed to try the older, and longer method, of testing my cochlear implant electrode by electrode, each one at a time. 

The test is known as an NRT (neural response telemetry) test.  It doesn't require much work on my part, besides sitting and listening to a series of beeps that range from quiet to loud to very loud to painfully loud and back to quiet again.  At one point, I indicated I wasn't hearing anything, and I could see the surprise in Sharon's face.  Repeatedly, she'd ask if I was hearing beeps during periods of complete silence and she would nod knowingly.  I knew we had found something, a reason why perhaps hearing had become so painful for me, so demanding of my energy.  

Sharon indicated my electrodes were not following the natural pattern they were supposed to, or as she said, "they were not interpolating well from one to another."  She felt I was getting too much high frequency and too little low-- quite a difference from before my surgery when I had zero high frequencies in my world.  But all those beeps, all the spoken "shh's" and "chh's" that felt like electric shocks to the side of my head... THOSE were the high frequencies completely dominating over all other sounds presented.

Voices tend to fall in the mid-frequencies, but with limited access to those sounds, no wonder I was struggling to hear PEOPLE.  

And so my program was COMPLETELY changed.  Most times when cochlear implants are mapped, the audiologist makes a small change or tweak here or there.  This was more like a CI overhaul.  It was what I needed: A FRESH START. 

It's still early to determine all that I can and can not do with my new program, but in the past 24 hours I have been stunned by the difference in sound quality.  I even performed a rehab exercise and stared with my mouth wide open at the computer after receiving this result:
 

96%?!!  ARE YOU *#&%ING KIDDING ME?!!!

  

Some other results from Day 1:  

• I can talk with my son for five minutes without having to look at him and by concentrating, I can follow.  
• I can hear the TV.  I may not know all of what is being said, but I can hear dialogue without straining to listen.
• I can hear phones ringing, and I know they are phones.  
• When I dropped my earring back on the floor this morning, I could hear where it hit, enabling me to pick it up immediately instead of a) losing it, or b) spending ten minutes to find it.
• I can hear the blinker in the car, but it's a simple clicking noise in the background, not a series of turbo-charged beeps like I previously thought.
• I can catch a few words my coworkers are saying without having to look at them.
• I can hear the snow melting from the roof, producing a beautiful pattern of soft pitter patter on the sidewalk. 
• And I can SING!   WHAT A JOY to sing!  I even locked myself in my bathroom late yesterday evening as to not to disturb my sleeping family as I pretended I was Norah Jones.   

On Thursday night, I cried, I grew angry and I felt it... I REALLY felt it.  But how right my friend was, that with that release, today's appreciation is all the more miraculous.
 
And tomorrow might sound even better. 

Thank you for your kind words, prayers, and love.  I love you back!

I Tell Myself

It's been awhile since I've ugly-cried.

In the last few weeks, I've whimpered here and there thinking about my approaching one year anniversary with the CI. I'm still not understanding the world. When I think like this, without warning a few tears might slide down my cheeks. But when I find myself questioning why my CI isn't helping me more, I shake it off.  I have to work, be a mom, and just do what I have to do.

I try to encourage others to embrace their truths, and when I start my own pity party, I try to remind myself I'm okay. It's going to get better, right?

I tell myself it has to. I tell myself I don't have it that bad.

I tell myself I have the most beautiful, wonderful children and a loving and supportive husband. It's not that bad, I tell myself. I wouldn't want to seem ungrateful.

But tonight I'm angry. Why isn't the hearing happening for me?

Perhaps I haven't been that honest all along. Perhaps instead of escaping into my blog, or giving speeches, or any of those achievements that made me proud- so very proud- maybe I should have spent more time this last year practicing hearing, advocating with my audiologist, really trying to wrap my brain around cochlear implant technology and the options available to make life easier.

Perhaps my "success" in other areas briefly distracted me from lack of progress when it came to my hearing.

Perhaps I've been seeking self-acceptance through others than myself, because honestly, every word of encouragement, every "LIKE", every Facebook message-- they can make a difference in getting me through a day without breaking down in sobs. Maybe I depend more on others than myself to get me through.

Tonight I stood in the midst of a business mixer, numerous voices surrounding me. But it's not voices. It's just noise. Sharp, sometimes painful, chaotic noise. I turn my volume up, I turn my range down, I change programs... And NOTHING WORKS.

And so I left the event. I got in my car, and I cried. I cried really hard. Blurry-eyed, I stopped the car and started writing. Because through my ramblings, perhaps there's some clarity.

God, HELP ME TO HEAR. I want to understand. PLEASE.

I finish this post in a convenience store parking lot, wiping away my tears, and continuing on. Another ugly-cry behind me, I tell myself I must continue on.