Tuesday, April 30, 2013

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, April 29, 2013

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).


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, April 22, 2013

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.


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. 

Thursday, April 18, 2013

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, April 15, 2013

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!  

Friday, April 12, 2013

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 audienceTo 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.


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.

Tuesday, April 9, 2013

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.