Tuesday, March 26, 2013

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!

Thursday, March 21, 2013

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.

Sunday, March 17, 2013

Here's to Hope: Vanderbilt University's Cochlear Implant Study

In a study led by Vanderbilt University, researchers are creating a patent-pending nonsurgical process for cochlear implants.   Check out the article from Vanderbilt University here.   Their hope is that this will greatly improve recipients' abilities to understand speech.

The research team aims to increase sound quality and also improve upon spectral resolution.  This is when the brain takes complex sounds and breaks them down into individual parts-- a process people with normal hearing have little problem doing.  A bionic ear, however, struggles with this, often causing speech clarity, especially in noisy settings, to be challenging and exhausting.

So far, participants in the study are calling the results "life-changing."  Even CI users who were happy with their electronic hearing before claim that their hearing after the study is even better.   

If you've been reading my blog, you know my top reason to get the CI was to understand speech as effortlessly as possible-- without looking, without lip-reading, in the dark, on the phone, in the car.  But it hasn't happened for me... not yet.

After almost a year, to be struggling with speech recognition is frustrating.  But this study, THIS WONDERFUL STUDY, is giving me hope.  And of course, I've emailed Vanderbilt... several times.  (VANDERBILT: If you're reading this... PICK ME!)  I would LOVE the opportunity to work with their research team.

If I can't though, I'm hopeful the results of this study will be a game changer for cochlear implant recipients.

My friend Jennifer, a Tennessee native and an amazing connection for me via the power of Facebook, is one of the study's lucky participants.  Jennifer was the first hearing impaired person I reached out to when I began exploring treatments for my hearing loss.  I stumbled upon her profile on a website that listed "hearing impairment mentors." In Jen's profile, she identified herself as a cochlear implant recipient, as well as a busy mother and an extreme social butterfly.  I sensed a match for me.

I wrote to her and she responded with one of the kindest, encouraging messages an in-the-closet hearing impaired person could receive.   Little did I know that Jennifer is truly a rock star in the cochlear implant world; she is very knowledgeable about treatments and assistive technology, she is an incredible advocate for people with hearing loss, and she is a shining spirit who gains followers wherever she goes.

Now she is providing an INCREDIBLE service by blogging about her experiences in the Vanderbilt study.  I'm sharing her blog, Journey to Sound, in case someone is out there who like me, wonders if speech clarity will ever come.

I hope this study, and Jen's experiences, bring as much hope to YOU as it has brought to me.   Miracles happen every day.  Let's keep hoping!

Thursday, March 14, 2013

Meeting Motivational Speaker Jeff Yalden

Yesterday I met Jeff Yalden, an award-winning and internationally acclaimed youth speaker.  (To see his website click here.)  Some might know Jeff as the teen life coach on MADE, an MTV reality show.  He's also known for his ability to connect with teens through capturing their attention and inspiring them to really think.  In fact, that is his main message: TAKE. TIME. TO. THINK.  

Since meeting him, I've certainly taken the time.

Jeff and I were in the same vicinity minutes before he took the stage to speak.  I said hello; we introduced ourselves.  I had read his blog before the event, so I had a sense of who he was and what he was putting out there-- not to compromise ourselves, not to seek validation from others.  In essence, Jeff Yalden is encouraging his audiences to honor their truths

We chatted about his blog, and I told him about mine.  Just the night before, Jeff was talking with his assistant about her brother, a man who has struggled with hearing loss since childhood.  Just recently- at age 45- the man received hearing aids.

We talked about why this happens, what it is about hearing loss that causes so many people to stay struggling for so long.  As I think about it now, I can offer a variety of reasons from my own experience.  Ignorance, vanity, cost, getting by for so long and for the most part, managing, albeit unhappily-- these are all reasons why someone might stop from asking for help.  I told Jeff about my own emotional/intellectual disconnect, how deep down I've known I would not be rejected for admitting the severity of my hearing loss.   Still, the emotions held me back.

As a child and young adult, Jeff Yalden experienced his own set of challenges.  I listened as he spoke of his once-strained and abusive relationship with his parents, and how when he graduated high school, he was abruptly kicked out and thrust into the overwhelming world of adult independence.  He spoke of how people get by in dark times such as these, often sticking to themselves, avoiding the helping hands and loving arms of those around them. 

It's so easy to think, "You don't know me.  You won't understand what I'm going through.

I knew exactly what Jeff meant.  I've often pushed people away as they've gently prodded me to let them in.  I've held on tightly to my ego, refusing to let others show me new pathways.  I knew if I revealed my broken self, if I spoke the truth of how much I needed their help, I would break down. 

As Jeff spoke, I thought back to a few years ago.   I had been offered a job that I really, really wanted.  Two weeks before my official start date, my new supervisor invited me to a picnic so I could familiarize myself with my new coworkers and surroundings. After lunch, several of us walked up an enclosed staircase, chatting as we went.

When I started my new job, my supervisor indicated that on the staircase those people were talking TO ME.  But I appeared to ignore them.  Obviously, I hadn't heard them.

At this time, I was prideful that despite my circumstances, I often appeared as a hearing person (or so I thought).  I was mortified my hearing loss had honestly revealed itself so quickly in my new professional role.

In turn, my supervisor kindly asked me a simple enough question: "What accommodations do you need to do this job?"

There it was:  an offer of support, a new avenue to explore, and a possible way out from the daily anxiety I felt trying to pretend to be someone I wasn't.  And you know what I said back?

"Nothing.  I'm fine.  I'll get by."

As the job went on, I grew incapable of talking with more than one person at a time, a task that was quite difficult in a busy office.  To avoid phone calls, I often ran after people to speak with them, taking a ton of time away from my other work duties. To compensate, I often worked more than necessary, usually calling upon my husband last minute to pick up my children from long hours at daycare.  I was left frazzled and exhausted both at work and home.  I grew so stressed that on several occasions, I had massive crying fits at work, sometimes to the point I couldn't breathe (in front of colleagues, no less!  AWFUL!).  At one point, I actually grew physically ill and landed myself in the hospital for about a week.

All because I pushed help away.

It was unfortunate leaving that job; however, the bigger loss was that I was unable to be honest with myself.  I learned the hard way that I needed to break down.  I needed to reveal that pain in order to pick up the pieces and rebuild a more confident, secure, and capable version of myself.

I'm grateful to know that now... that it's okay to say, "Help me." 

Thank you, Jeff Yalden, for the reminder.

Sunday, March 10, 2013

Cochlear Implant Regrets

This past week, I was interviewed for a Massachusetts newspaper.  The reporter is the relative of a reader of my blog (Thank you, reader.)   Through email exchanges with the writer, I learned she had a great amount of technical information for her upcoming article on cochlear implants.  What she lacked, she claimed, was an emotional perspective. 

Well then... I'm your girl.

Being interviewed is exciting.  It's thrilling someone out there finds my story to be news-worthy, and empowering that my insight might reach someone looking to identify with an experience like my own.

But it also worries me.

I feel a great deal of responsibility when speaking about cochlear implants.  My journey does not seem to be a typical one, and I'm wary of becoming a CI spokesperson.   I worry my comments will evoke skepticism, avoidance or fear in someone who could really triumph with a cochlear implant.  I also don't want to be labeled the Judas of the CI world by somehow implying, despite others' tales of life-changing miracles, that the surgery isn't all it's cracked up to be.  Still, I'm committed to the truth, and this happens to be mine.

So it's a heavy task... sharing this experience. 

The reporter asked a lot of questions.  The answers should have come easily considering I was sharing the story of ME.  Still, I spent hours pondering, searching my soul for responses that reflected my whole-hearted truth. 

Perhaps I took the most time when she asked if I ever regret the surgery.  I read that question over and over again, sighing each time, wondering what would merit the most honest response. 

Almost a year into my experience, it's true I'm nowhere near satisfied with the quality of hearing I currently have.  I could be angry, I could feel cheated, and for sure, sometimes I do.  But there's a bigger reason why I DON'T regret my decision.

This isn't JUST about hearing.

I've learned this journey is also about connecting, about sharing, about honesty.  I've craved these in my life for more than two decades, and without the CI- as frustrating as it can be- I just know I wouldn't have shared my true self.  Nor would I have met so many wonderful people, or started this blog, or be interviewed for a Massachusetts newspaper (I'll share the article once its out, by the way.  Stay tuned.).

So no.  There's no regret.  Besides, I have a whole lot of journey left in front of me.

Friday, March 8, 2013

Big Plans (A Thank You to John O'Brien)

The eleventh month of my cochlear implant journey coincides with March, a time of year famous for holding its lion-like threats over our heads.   As we battle to escape the excessive dreariness of winter, at least some comfort exists because spring is within reach-- a time of growth, of renewal, and we hope, a time for clarity.

Believe me: I have high expectations for Spring 2013.  The vicious lion of March has had quite a tight grasp on me this week, and I can feel myself crumbling.  I'm angry.  I'm tired.  I don't want to fight anymore.

John O'Brien knows this.  Throughout the winter, our paths have intersected on several occasions. With each interaction, I find myself sharing my struggles with him, though I never make plans beforehand to do this.  It's weird, really.   In fact, I didn't even plan to write this post.

John and me, J. Walter Juckett Awards 2013
Do you know John O'Brien?  If you live in my upstate NY community, you probably do.  He, along with his brother, Kevin, received the prestigious J. Walter Juckett Award last night, a recognition given to those who dedicate their lives to the betterment of the community through philanthropic activities.  (To read more about the O'Brien brothers, click here.) 

John and Kevin are extremely deserving of this award, and I'm sure members of our community know of the brothers' charitable actions much more so than I do.  

You see, I only met Kevin this past Monday.  Meanwhile, John and I have only been friends since January.   

People seem surprised when I tell them this, and assume, considering the intensity in which John promotes my blog, that we must be old family friends.  In fact, John mentioned my blog during his acceptance speech of his award last night.  People have asked if I knew he was going to do this.  I didn't.  I was extremely moved he took his moment and somehow weaved my name into it, especially considering our BFF-ness is still very new.  (To read more about the Pam-meets-John story, click here.)

Since January, John has provided me with a great deal of support, generosity, advice, and friendship.  We talk about PLANS, about faith, and how fear is often a front for times we lack control in our lives.  

These are emotionally heavy conversations because often, I want control.   I think back to when I scheduled my April 2012 surgery.  I was scared out of my mind, but I accepted the fear because it was a part of the plan-- MY PLAN.  Of course, I expected to be worried.  I mean, someone was drilling a hole in my head after all.

Then I expected to take some time- let's say two months- where I would practice and get used to my new hearing.

Next I'd be recognizing new sounds by the minute, and best of all, I'd be able to understand EVERYONE crisply and clearly.

The final stage would mark the rest of my life; I'd lay my broken self to rest and carry on in my journey complete with everlasting joy and success.

This was MY PLAN

Nowhere did it mention that in March 2013, I'd fight back tears as I desperately tried to get through an excruciating phone call this past Tuesday.  Nowhere was it written that I'd be at a function last night straining to understand a person six inches away from me.  Nor did I anticipate I'd still be approached by people who, despite what I assume are good intentions, opt to speak to me in an excruciatingly slow and animated fashion, immediately evoking feelings in me of extreme self-consciousness.   Minute after minute after minute, the reminders are there:  You haven't escaped, Pam.  You're STILL broken.

Admitting all of this is hard for me.  It's not fun writing sad chapters in my story, especially when people commend me for optimism and inspiration.  In addition, I feel like I traitor in the CI community; recipients all over the world share stories of their miraculous new lives since being implanted.  Then there's me, like a recording on repeat, sharing how I can now hear oven timers, microwave beeps, and door chimes.  Exciting in the first month, for sure, but not so thrilling when those are still the sounds I'm referring to almost a year after surgery.  Surely if you're a prospective candidate for a CI and you're reading this, you're going to switch to a more hopeful blog where the deaf-now-hearing-person is chatting on the phone.   I don't blame you.

What keeps me going is that despite my frustrations, I believe this is happening to me for a reason.  Even in my darkest periods pre-surgery, even with my struggles to tell people about my circumstances, even when I screamed and cried and wondered why I had to be different from everyone else, I've always known this to be true.  

There is a reason. 

And while I didn't plan for John O'Brien to join me in this journey, he's now a part of it.  I'm grateful, John.

Through trials and tribulation, I must be grateful for THIS PLAN, whatever it may be.