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.

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.