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.

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.