Monday, February 25, 2013

The Speech

Since September, I've been a participant of Leadership Adirondack, a program sponsored by the Adirondack Regional Chamber of Commerce in upstate New York.

For years, I've admired the LADK program from afar; the classes are comprised of bright, philanthropic professionals eager to make a positive mark on the world. Though my heart has yearned to join this crew for awhile, year after year my hearing impaired self questioned if I was good enough to even apply.

While life with a cochlear implant is by no means perfect, I know my confidence has grown from the journey-- partially because I AM hearing better, but more so because I've shared my true self with so many. And you know what? I'm okay.

2012 was my year to join the program, and I am ecstatic to have learned what I've learned and to have met some of the greatest people I've ever encountered.

To top this all off, my LADK classmates selected me to speak at our graduation dinner, held February 21st in Lake George.

What a program, what a night, and what an honor. The speech was a game-changer for me, increasing my hopes to reach a higher level of self-acceptance than ever before.

I've received several requests for a transcript of my speech, so here it is.

Thanks to all who cheered me on and those continuing to route for me. I promise-- I'm routing for you too. 

Tuesday, February 12, 2013

Hearing Loss: A Foggy-Brained Future?

As a person with severe hearing loss, I've often feared missing the joke at a party, or sleeping through my alarm clock.   Where I've failed to worry regards any risks for future health concerns.   I don't worry because, honestly, I'm not aware of any.

This morning I received an email from my husband with a link to an article by Katherine Bouton, author of the new book, “Shouting Won’t Help: Why I — and 50 Million Other Americans — Can’t Hear You." (Great title, by the way.  I look forward to reading this.)

While I choose to keep my spouse informed of various minutiae throughout my day via text or instant message ("My back itches."  "I'm going to the bathroom now."), Jeff doesn't usually reach out unless it's pretty important.  So when I received the following link, I paid attention.  An important read if you or someone you know has hearing loss: New York Times Article, Straining to Hear and Fend Off Dementia.

I spent the next few minutes reading, pummeled with both terror for my future and a sense of validation that some of my recent experiences seem supported by scientific evidence.

According to Bouton's article, which discusses the findings from a 2011 neurological study, the worse the hearing loss is of a person, the greater the risk s/he has of developing dementia.  THAT's the terrifying part.

The study, led by Dr. Frank Lin, an otolaryngologist and epidemiologist at John Hopkins School of Medicine, discusses the reasons associated with this correlation, the first being social isolation.

Given the first sign, I let out a sigh of relief.  I'm a social butterfly after all.  Sure, I'm a mom... but I DO go out sometimes, and when I do, I might even sing karaoke, and I most definitely bust out Michael Jackson choreography publicly as often as possible.  Surely this makes me social.  I'd even go as far to say that I'm the person who is called upon to greet guests at a function, to welcome new staff into the workplace.  In my professional endeavors, I've even been nicknamed "Pambassador" for my gregarious abilities.  Social isolation?  Well, that's certainly not me. 

And then I read on.  The article discusses multidisciplinary studies on isolation showing that perceived isolation, or loneliness, is a more important predictor of health outcomes.


How many times have I gone out with friends to loud, crowded bars?  I think of the photos from many nights out.  Physically, I was there.  I was with the group.  But in most scenarios, I probably didn't hear a word.  I think of the many times I've arrived home from social occasions, utterly exhausted from my attempts to interact with my peers, tears streaming down my face because of how alone I felt in the world.

Preparing for a night out with friends, November 2011 (Pre-Cochlear Implant)

Do I have perceived isolation?  You bet I do. Each time I cry of my loneliness, or question why I can't reach a certain level of connection with friends, it's my perceived isolation staring me in the face.

The second risk factor is cognitive load.  The article explains: "Essentially, the brain is so preoccupied with translating the sounds into words that it seems to have no processing power left to search through the storerooms of memory for a response."    So there's a NAME for this!

Throughout the last decade, but mostly in the last five years, I have been SO TIRED.  Often I have to remove myself from family situations because I need to rest, although physically I'm usually not drained.  It is indeed a mental exhaustion that wears down my spirit, that makes me feel as though I'm a lazy person when I KNOW I have the drive to work hard and to focus.  Just last week I went to my physician for blood work, trying to identify the vitamin deficiencies or conditions that were contributing to my self-diagnosed case of "foggy brain."    My test results came back normal, but I now question cognitive load's role in my fatigue.

The third risk factor is a pathological process suggesting the possibility of a genetic or environmental factor that could be causing both hearing loss and dementia.  I can't pretend to know anything about that, but I'd prefer to stay away from this factor if at all possible.

So what does this mean?  Does this indicate I'm en route to dementia?  Maybe.

But for now, this article reminds me I'm not alone.  Forty-eight million Americans suffer from some degree of hearing loss.   FORTY EIGHT MILLION!  Still, the stigma of hearing loss and the many uninsured costs of remedying the conditions keep so many from seeking the assistance they not only need, but the help they deserve.  Bouton's article also makes me recognize I need to take care of myself.  This means more rehabilitation efforts, more audiologist visits, and more of an effort to build social relationships in less noisy settings.  While I can't choose what frequencies I am able to hear naturally, I certainly can advocate for myself so I'm not in a position where I have to strain.

Lord knows my cognitive load is heavy enough.

Thursday, February 7, 2013

Cochlear Implant Recipient on The Doctors Show

In my previous blog post, I discussed Dawn, the recipient who was going to be featured on this week's episode of The Doctors.  The episode aired today, and while I wasn't home to watch, I found a link to Dawn's segment.  I can identify with much of her story-- the lip reading, limiting myself to small groups, and fearing prior to the surgery what "real sound" would sound like.   Here is the link to the video, and WARNING:  Have tissues ready.

This is no doubt a miraculous and beautiful story, and over the last few days, I've questioned if I've become a bit of a negative nelly, seeing videos such as these and feeling a tad more jealous than I should for people who have shared suffering similar to my own.

I've also wondered if people who are completely deaf, or at least mostly deaf, seem to do better making sense of the new CI sounds than someone like me.   For example, I know one woman who was completely deaf and within a month following her surgery she was conversing normally and talking on the phone.  I figured I had an edge having some hearing, limited as it is, but now I'm not so sure.

I truly believe I heard most sounds as a child, but I know I've slowly lost a majority of them over time, particularly in the last five years.  I'm wondering if my brain is stubbornly holding on to 23 years worth of sound memories and refusing to make the switch over to bionic hearing because I just know... I KNOW... certain electronic sounds are just not the same as natural hearing.  I'm wondering if this wouldn't be an issue if you didn't know any different.  My audiologist tells me that eventually the bionic hearing will become "the new normal," and I'd love for her to be right.  But for now, the left side hears one thing, and the right hears a completely different version.

If there are any cochlear implant recipients out there able to offer insight on this topic, I'd love to hear from you!  Please share.

Monday, February 4, 2013

Cochlear Implant Feature on The Doctors

Today I learned The Doctors show will be featuring a piece on cochlear implants this Thursday, February 7th.  According to the promo, a recipient by the name of  Dawn K. is supposed to "hear again for the first time in a long while." Dawn's story is part of the show's "Feel Good February," featuring inspirational patients who against all odds experience miracles.  The show airs at different times of day depending on your local area.

Here is the promo for The Doctors where viewers can see a preview of Dawn K.:

From what I understand, Dawn has been implanted with a Nucleus Cochlear Implant made by Cochlear-- the same model I have.  In the video, viewers see Dawn's little boy behind her, cutely asking if "she can hear him," and like magic, she understands what he says.

Sigh.  WHY was that not MY story?

I'm not suggesting that the amazing Youtube videos of CI recipients are phony, but I AM suggesting that it is not the truth for everyone going through this process.  Unfortunately, because of my experience, my skepticism has increased when I view these videos I once found so inspirational.

Remember this one?  Pretty tattooed Sarah?

This was the first video that moved me enough to leave a comment on YouTube, and it obviously hit an emotional chord with millions, becoming a viral sensation and sending Sarah to visit Ellen DeGeneres.  (Hi Ellen!  I like you too!)

Anyway, I remember sobbing watching this video, my heart filled with hope that one day soon, I would be Sarah.  And I was SO happy for her.  Then I recall feeling appalled by some of the nasty comments, suggesting the poor deaf woman was "faking it," and that she was "really crying because of how terrible the world sounded-- just a bunch of beeps and whistles."   In response I left a comment of encouragement for this woman because regardless of what truthfully happened for her,  I know I wanted the miracle to be real.  (Sarah's implant is different than mine, by the way. Her device is the Esteem Hearing Implant by Envoy Medical.)

Somewhere out there, I bet someone is considering cochlear implant surgery and hoping that like Dawn and Sarah, s/he will have the experience of being hooked up to a computer and just like that, have NORMAL HEARING.  I wonder if the person is like me, ignoring the negative comments because it's just so much better to hope they're not true.

If you're preparing for surgery, I hope you get your YouTube moment.  I really do.

But be prepared: You might not.

It might be a long journey-- weeks, months, I hate to say it, but even years.   I promise you, as you strive to hear, you'll probably find yourself LISTENING not just to sounds, but to your spirit.   And if this happens, I bet you'll find clarity in your journey, probably in more ways than you can ever imagine.

Friday, February 1, 2013

Birthday Wishes to Myself

This week I had a birthday. 

To celebrate my 32nd year of life, I had scheduled an early morning pilates class and later a one hour massage.  Fancy, right?  In between, I stopped by my favorite coffee shop, and learned a friend had paid for my cappuccino in advance.  A-maz-ing.   In the afternoon, my coworkers took me out, complete with the afternoon-shift waitresses singing to me while a single candle flickered joyfully in my almond amaretto cake.  That evening, Jeff and I slow danced in our kitchen, Claire looking on giggling and rolling her eyes as Jeff tilted me into a dip.  The day ended with Colin and Claire's performance of a "Happy Birthday" routine that for whatever reason referenced KFC.  Here it is:

If it sounds like a blissful day-- you're right, it was.  Perfect, really.  But I was surprised.

Don't get me wrong;  I suspected I'd garner a few Happy Birthday posts on my facebook wall, but it was my sincere appreciation for each moment that caught me off guard.  The gratitude and peace I felt on my birthday was in complete opposition with my thought processes from just three days earlier.

Late Sunday morning, tears stung my face for a full ninety minutes.  I clutched my stomach, not out of pain exactly, but because of a sensation I can best describe as a "heavy emptiness."  I was mourning my upcoming 32nd birthday, questioning if my post-college life had produced the dreams I aspired for myself a decade earlier.  I struggled with guilt too, intellectually seeing the blessings in my life, but emotionally, I was failing to acknowledge them.  I was lost and lonely and unable to articulate why.

A few nights earlier, in the midst of insomnia, I searched for other cochlear implant blogs.  A common thread weaved from blog to blog in that posts subsided several months post-surgery.  In some cases there were  quick messages letting readers know there wasn't much to report because "hearing continued to be so amazing!"  One woman wrote her final post eight months after surgery, reporting she was stopping her blog because "she heard everything now, regularly having phone calls and enjoying the world around her." 

I should have been happy for her, but I wasn't.  I stopped reading.  I was pissed.  I was jealous.  I'm ten months into my CI journey... TEN MONTHS.  What is wrong with me?   Why is it taking so long? What am I doing wrong?

I suspect those buried feelings bubbled to the surface during my Sunday morning crying spell.  Jeff told me to take it easy, to lessen my unattainable expectations of myself.  It was advice I've been given repeatedly but still struggle to follow.  It was MY fault, I told Jeff.  I wasn't working hard enough... I wasn't doing enough.  I WASN'T GOOD ENOUGH.  

On birthdays, some people hope for shiny presents, or maybe cocktail-infused parties surrounded by adoring friends.  Spa gift certificates, romantic dinner dates, bed and breakfast stays... these are all indulgent ways I've asked to celebrate my birth in years past.

Expensive dinner? Check.  B&B?  Check.  Spa visit?  Check.  My 30th birthday.

This year, I wanted something I've needed for a long time, something I probably need now more than ever: SELF-COMPASSION.

Think how often we say to birthday boys or girls, "Just RELAX!  It's YOUR BIRTHDAY!", or "You shouldn't have to do THAT.  It's YOUR BIRTHDAY!" 

Birthdays are often seen as "free days," a 24 hour period where we excuse ourselves from dreaded day-to-day tasks, instead focusing on the simple pleasures of feeling special, of feeling loved.  At one point on my birthday, I found myself starting a task I had not planned, wondering how I would ever accomplish it, thinking how other parts of my day would be negatively impacted by my incompetence when suddenly my mind screamed at me.

STOP!  PAM.  JUST.  STOP.  I listened. I breathed. 

I returned to the present moment.  I chose to focus on each and every loving sentiment that came my way.  I realized the world wouldn't end if I didn't check off my entire to-do list in one day.  I realized it was a choice, and an effort, to make room for love, for joy, for PEACE.  Sure, it was my birthday, my "free day," but I realized I don't require a calendar to tell me when it is justified to show myself compassion.

Following my birthday massage (another great gift I allowed myself), I caught my 32-year-old reflection in the spa mirror.   I looked relaxed, free from worry and expectations. I noticed THIS painted beneath the mirror:

And I listened.