Thursday, May 23, 2013

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.



Sunday, May 19, 2013

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 relaxingMellowEnjoyable.  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.

Monday, May 13, 2013

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.

Friday, May 10, 2013

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, May 6, 2013

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?






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).

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?