Tuesday, December 4, 2012

The Bright Side

I like to think I am an optimist… that I try to see the good in even the bleakest of situations.  However, when I’m in a Dayquil-fueled fog accompanied by head-buzzing misery, I struggle to see the bright side.

Prior to Thanksgiving, I caught the dreaded stomach bug.   A week later I replaced my condition with a never-ending sore throat and sinus headache.  I’ve had two colds since my surgery, and both times, it seems my cochlear implant’s functionality is compromised during cold and flu season.  For me, a simple cold now coexists with head pressure surrounding my implant site, and more annoyingly, a constant buzzing that remains ringing through my head regardless of whether I am wearing the processor or not.  That’s right; even when the implant is OFF, I still hear noise—a condition common to people with cochlear implants known as tinnitus, also known as “ringing of the ears.”  Some people have this without being hearing impaired or having an implant, and it’s my understanding that deaf or not, it sucks for everyone. 

Additionally, certain noises seem to be even more obnoxious than normal when I’m sick.  Head-buzzing is one of them.  Another is the high pitch squeal of Claire’s screams when she plays with her brother.  This has always annoyed Jeff, but pre-surgery, I was oblivious to its occurrence.  Well, I hear it now and OH. MY. GOD.  Little girl screams are the WORST. 

As you can probably tell, I’ve been grumpy, and though I should probably focus on my blessings during this most-wonderful-time-of-the-year, I admit I haven’t been feeling very thankful.  I thrive to hear voices, after all… clearly and effortlessly; I didn’t get this surgery to hear squeals and buzzes.  And so, I’ve spent the last few weeks pretty pissed off toward my cochlear implant progress.

Today, however, and in more ways than one, I was lucky to see some light.  It appeared during an all-day training held in a large, hotel banquet room.  The majority of the training was lecture-style, and the speaker was great—charismatic, interesting, and to my luck, he spoke loudly and clearly.  Even better, I realized I didn’t have to work to understand him… that is, until I slid my processor magnet off my head to see what he would sound like without the implant.

He wasn’t clear.  And he wasn’t loud.  I had no clue what he was saying.

It would be a disservice to the implant not to acknowledge its value to me when I’m attending presentations and lectures.  In that setting, and with the right speaker, it is working.  Upon realizing this, the room brightened.

The training, incidentally, focused on cultural diversity and social identities, and considering my 23 years of experience with a disability, I felt I could contribute to the discussion.  After sharing some of my story with the participants, one woman added that when she first heard my voice, she wanted to know “where my unique accent was from.”

There it was—the reaction to my speech that I try to make sound as normal as possible.  Sometimes I get the “Where-are-you-from question,” and other times, and especially from kids, I get the frank “You-talk-funny” statement.  On occasion I’m asked if I have my tongue pierced.

Then there’s my favorite-- when a daycare parent once looked at me inquisitively while I spoke and then commented, “You’re so exotic.  Where are you from?” 

To which I replied, “New Jersey.”

If ten years ago, a colleague had pointed out I talked differently in front of 50+ professionals, I most certainly would have been embarrassed.  I might have cried.  And I definitely would have wanted to wring that lady’s neck for spotlighting the fact that I was different.

Today, however, there was no bitterness.  I realized she wasn’t trying to hurt my feelings, but that she was curious—that’s all.  Just. Curious.  What a difference from a decade ago…  Hell, even a year ago!  My progress in self-acceptance continues to surprise me and truly brighten my days. 

I realized today that the bright side is there, but it is my choice whether or not to let the light in.  Moreso, when the journey seems foggy and dark, it is up to me to remember those moments of brightness.  During the 2012 holiday season, my first Christmas with the implant, I choose for my days to be merry and bright.   I wish the same for all of you.

Tuesday, November 13, 2012

Our Hometown Tree

The Rockefeller Center Christmas Tree beginning its journey from my hometown of Flanders, NJ

Last night started like most other weeknights: I was hungry in bed trying to convince myself NOT to have ice cream (FAIL), Jeff was in the living room reading about nineteenth century Russia, and I tried my best to maintain optimal focus between concurrent games of Draw Something and Bravo reality shows.  Then something magical happened.   Lighting up my facebook news feed like a Christmas tree, was just that: a Christmas tree, but this was no ordinary tree—THIS was a 10 ton Norway Spruce from my hometown of Flanders, New Jersey, selected as this year’s iconic Christmas tree at Rockefeller Center.

My parents still live in Flanders, while many of my classmates from high school live in or nearby the suburban town located in northwestern New Jersey.  The town and its surrounding areas were not spared from Hurricane Sandy’s destructive path, and while my parents were extremely fortunate to lose electricity for only 48 hours, I learned through facebook that many of my old friends went up to almost two weeks without power.  Many also waited for hours to fill their gas tanks, suffered through long trips at the grocery store and were unable to return to their schools, workplaces, and businesses.  In fact, many friends had their power restored just the day before the wondrous news of the Rockefeller tree.  I imagine that going from heartache and exhaustion to civic pride was a real morale booster for the Flanders residents.

It was for me too.  Four hours north of Flanders in my upstate NY town, I had been feeling kind of glum.  And to make it worse, I felt guilty for feeling this way because I knew my troubles were minuscule compared to those trying to move past the hurricane.  When the weatherman warned of Sandy’s potential damage,  I absolutely went out and bought an extensive supply of bottled water and groceries, but Sandy’s presence in my town was nothing more than a somewhat windy rain shower.  There was no damage-- aside from what I was viewing as an ongoing catastrophe on the right side of my head.  Now in November, I had reached a plateau with my cochlear implant progress, and even more embarrassing is that in recent weeks when I struggle to hear, I have suddenly burst into tears, a totally unfortunate and unprofessional occurrence.

But how can you be sad when an 80-foot tree from your hometown will soon be the most famous Christmas tree in the world?  You can’t. Upon sharing the excitement in my own facebook status, I started daydreaming how amazing it would be for all my friends of Flanders past to come together in Manhattan to view the tree- OUR tree.  Then I took the daydream to the next level, imagining that I would sing “O Holy Night” at the tree lighting.   And then I started laughing at the thought of us all ice skating together beneath the spruce, similar to how we had skated in middle school at a place that I hold near and dear to my heart: The Hackettstown Roller Rink.

During my middle school years, I spent many Friday nights at this establishment.  For a boy-crazy pre-teen like myself, it was heaven.  Sporting a kickass bodysuit or perhaps a hooded baja shirt,  I would glide around that rink to tunes by Ace of Base and Crash Test Dummies, strategically positioning myself to grab a nearby boy for the much anticipated couple skate.  Young couples would demonstrate their love to each other when the rink dimmed the lights, skating hand in hand to “I Will Always Love You” by Whitney Houston, or “I Swear” by All-4-One.  And sometimes, we would use this opportunity to exit the rink and kiss by the video games, fulfilling all of my dreams of middle school romance.

I then started thinking about my hearing in relation to the rink.  It was certainly a noisy place with all the kids, and the loud music, and such environments are usually not my favorite locales because of the background noise.  Maybe it was because I was skating (or kissing) more than talking, or maybe my hearing was just so much better than it is now, but I can’t remember even thinking about my hearing at the roller rink—a much different situation from today, as I rarely go an hour without silently acknowledging and damning my disability.

Thanks to facebook, another wave of nostalgia washed over me. My high school boyfriend, Andrew, had liked my status about the tree from Flanders, and my thoughts shifted from middle school years at the roller rink to high school years when he and I had dated.  Andrew was in the class ahead of mine, played on the varsity soccer team and drove a sweet Grand Am.  He had earned the nickname Rico Suave, I think because he would unabashedly sing the god-awful song on demand (fortunately he did not look like Gerardo), and also, because he grew up in an Italian/Spanish household and acknowledged women with over-dramatic charm and flattery.  And I loved him.  For being 15 and 16 years old, we thought we were so mature, not knowing at the time that adult relationships rarely include constant love notes, dramatic marathon sessions on the telephone (YOU hang up first.  No, YOU hang up first!), and the hormonal drive to touch one another as often as possible.

By the time I was in high school, I had developed a greater awareness of my hearing impairment.  It didn’t interfere all that much with my teenage activities (I spent hours on the telephone, for example), but there were minor instances when I assumed my hearing was obvious to everyone, and I felt ashamed and embarrassed, and totally uncool.   As Andrew and I grew closer, I one day mustered the courage to tell him about my hearing, which of course led to a crying fit despite Andrew’s reaction of absolute indifference.  Looking back, this might have marked the first time I honestly revealed my truth to someone.   Sixteen years have passed since then, and I now recognize that any time I “come out” to someone, it never results in the person not liking me.  Still even today, even with this blog, I still fight the shame that comes with revealing my true self to people.

Some more about Andrew: I’m surprising myself by even including him in the blog.  Our breakup was just as dramatic as the relationship that preceded it, and up until meeting my husband, I mourned that Andrew and I would likely never speak again. Though I have not seen Andrew in more than a decade, he and I have started to reconnect in the last year via facebook, and it's an unforeseen joy to read posts that he is advancing in his career and look at pictures of him and his adorable wife and feel genuine happiness for the boy that shaped so much of my teenage experience.   When I started the blog, he sent me an encouraging message wishing me the best.  He also gave me his blessing to include stories of him in the blog (he was never very shy, after all) and assured me my hearing had always been a non-factor for him, a sentiment that the insecure teenager in me truly appreciates.

Cut down today and shipped to Manhattan, the heavy tree from Flanders will soon be admired by millions of people.  It will serve as a symbol of joy, and of tradition, and for many looking up at its white lights this holiday season, it will serve as a symbol of hope. Whether or not I get to view the hometown tree in Rockefeller Center, I am grateful it has already reminded me of my roots and how far I’ve come. 

Sunday, November 4, 2012

Lessons From Jamaica: A Six Month Update

Kathryn on her wedding day and me in Montego Bay, Jamaica
Hi there.  Remember me?  I realize a long time has passed since I last posted.

A week ago, I drafted an apology for the lack of updates.  I started by explaining how “insanely busy” I’ve been throughout September and October.  It was similar to a recent talk I had with a personal trainer at the gym.   First you should know this guy was not ­­my trainer- I’m not that cool or rich.  Rather, I was waiting for someone at the gym, and the trainer was nearby, so I chatted with him.  I initiated the conversation by telling him how I really want to make it to the gym more, but I am just so busy with this, and that, and this…   He listened to the tales of my complicated life, then shrugged and said, “If you want to be here, you’d be here.  There are many people busier than you and they get here.  You have a lot of excuses.”

I guess I could have been pissed off, but I tend to appreciate straightforward people.  And he was right.  I was making excuses.

The same goes for writing… I love it, and I love this blog.  If I really wanted to, I’m sure I could have posted an update.  Lord knows I spend enough time on Facebook commenting on photos.  So what has been holding me back?

When I started the blog, I wanted to inform my family, friends, and colleagues of my decision to get a cochlear implant.  I figured it was easiest to update everyone all at once as social media carried my news from person to person.  It worked, but once I published, I also realized the weight of my shame as a hearing impaired person, its heavy presence on my shoulders day after day, and the constant voice whispering, even in the presence of success, “You’re not good enough.”  Sharing my feelings via the blog was an incredibly freeing experience, an occurrence I credit for changing my life.  I wasn't just ready to hear, but also to heal.

Following surgery, my activation and initial weeks in rehabilitation proved to be challenging, and as frustrated as I was with the new cochlear implant, I at least recognized as a writer that my experiences made for a good story.  I was also generally optimistic.  I figured in the months that followed, I would persevere through my trials and tribulations.  I predicted that one day I would say to you: Yes, the beginning of this journey SUCKED, but LOOK AT ME NOW!   I’d be sharing stories of how I talk for hours on the phone with my friends, or how when driving in the car, I pick up all the lyrics to a song, or how my new hearing makes me feel fully competent, completely included, connected and whole.

I tend to describe my cochlear implant success based on how well I communicate in “bigger” milestone events as opposed to everyday occurrences.  I realize this analysis might not be the most accurate, but I can’t help but put more emphasis on the significance of hearing during special occasions.  Post-activation, it was my son’s communion and my daughter’s birthday party—two events surrounded by a storm of unrecognizable noise.  NOT a great hearing weekend.  Then came my first family vacation with the implant, and the reality that life with a processor was often inconvenient.  I mourned the loss of natural hearing I once had in my right ear.  I was also saddened by the difficulty I experienced trying to understand multiple voices in a single setting. 

With each milestone that passed, I hoped the next big event would be better.  May events were difficult, I still struggled in June, but with the arrival of summer, and a few different mappings, I thought I was on a better track. Though I still wasn’t where I wanted to be, people around me were noticing a difference, saying I was more relaxed and seemed to understand more than when I was without the implant.

My BIGGEST event of 2012, the one occurring a whole six months post-activation, was the wedding of my best friend, Kathryn.  She and I talked about the occasion before I even went through surgery, and I’d say things like, “I’ll be able to HEAR at your wedding!  YAYYY!”

This was NOT just any wedding.  Oh no.  This was a full five-day event in Montego Bay, Jamaica, complete with all-inclusive cocktails, a trip to the spa, uninterrupted, child-free time with my husband, and more than 70 guests joining for what would be a once-in-a-lifetime occasion.  In my airplane group alone were four sets of parents collectively leaving seven children ages 8 and under with trusted babysitters.  This does NOT happen every day, friends, and I promised to embrace every second of Jamaica to the fullest.

And I did.  The wedding was beautiful, the resort was amazing… but it’s not a complete story if I didn’t admit to the cochlear implant frustrations.  First, before I even made it to LaGuardia Airport en route to Jamaica, the ear hook on my processor broke.   Of course, it was my last small one.  I was forced to use a large hook for the remainder of the trip, resulting in an awkward fit around my ear.  I spent the first two days at the beach feeling my processor dangling from my head, petrified it was going to get too wet and no longer work.  But I didn’t sweat it… it was the trip of a lifetime, and in the days that followed, I didn’t wear it at the pool or beach.  Was it hard to hear?  Yes, but I was in Jamaica.  No problem, Mon.  Plus there were endless frozen drinks.

I was able to push the processor frustration aside, but another remained.  I had anticipated hearing much better WITH the processor than what was actually occurring.  I expected success in the airport (I had never been able to hear in an airport before), but I found it just as difficult to communicate as it had been in pre-implant life.  I also found group conversations to be more difficult than I expected.

At dinner one night at a restaurant at our resort, I sat among some of my favorite people in the world—beloved family members, my best friends, my husband’s best friends.  Conversation was occurring all around me in various directions, and several times, people had said something to me but I failed to understand.  For a few seconds, I let my frustration show, and admitted to the table I was having a lot of trouble.  As soon as I said it, I felt the tears coming.  

 I was NOT going to cry in Jamaica, I had told myself, and I excused myself from the dinner to shake it off in the ladies’ room.  I later realized the tears were not just because I hope to do better, but because I realized, others so wanted it to be better for me too.  I saw the hope in each person’s face that surrounded me at that dinner table.  I often cry when I feel loved, and that night I definitely did. 

The next day- the wedding day- Kathryn had gone to her suite to start getting ready.  It was midday as I sat by the pool when suddenly, those tears returned.  But this time, there was no shaking it off.  This time, they flowed freely and uncontrollably.

The few women around me understood I was emotional because my best friend was getting married.  I blubbered on and on about how much we had been through together,  how she had been by my side at my wedding, and a bunch of other dramatic-girl sentences that left all of us in bathing suits sniffling and hugging while slurping our daiquiris.

But it was more than that.

Perhaps prompted by the previous night at dinner, I had been thinking about the cheerleaders in my life.  I thought about how Kathryn had always wanted the best for me when it came to my hearing.  Having lived together for four years during college, she knew of my situation during a time when I spoke with very few other people about it.  Her understanding of me wasn’t just because I shared my feelings with her, but because she saw it.  She LIVED it.  And in many circumstances, she was my lifeline, filling in the missing pieces when I didn’t understand, rephrasing or repeating when I needed it.  Above all, I knew she didn’t see me as “the hearing impaired friend,” but just as Pam.  I’ve been blessed to have developed other similar relationships since that time, but considering how special Kathryn’s and my friendship is, and how really, she served as the first person I truly “came out” to, it was completely justifiable that I turned into an emotional basketcase three hours before the wedding.  I cried from a place of gratitude.

So why haven’t I written?  Maybe it’s because the writer in me felt that the story was not getting any more exciting.  Maybe I felt I was not only letting myself down, but letting others down, as well.  Six months post-activation is really no different than three months ago.  Sometimes life with the implant is fine, and other times, it’s annoying.  I remain grateful I can hear the phone ring, but totally pissed that I can’t talk on the phone without struggling.

Speaking of phones, I recently talked with my friend Kathryn, now  married and settling into life after Jamaica.  We don’t speak on the phone though… rather, we text each other for hours at a time, often providing one another with amazing commentary during Real Housewives episodes.

In our last texting exchange, we talked about continuing to motivate each other to work out, to maybe do a half marathon soon… and at the end of the conversation, she suggested we put a phone call- a REAL one-  in our schedules.  She followed up by saying, “Who cares if you can’t hear me?  We can text about it after.”

At this point in the journey, I seem to be at a plateau in the climb.  Still those who love me continue to be patient and cheer for me, and even push me to try harder.  I am grateful because frankly, I need it.  The challenge continues, but I try to remember what my friend Kathryn tells me: “You’ll get there.”

Monday, August 27, 2012

To Have, To Hold, To Hear

I met my husband in October 1999.  I was a freshman at Syracuse University, and Jeff was the cousin of my roommate, Kathryn.  Jeff plus three of his hometown friends came to visit for the weekend, and as the four boys entered my dorm room, I quickly assessed that I needed to get the hell away from them… and FAST.  They were NUTS.   Fifteen minutes into their arrival, I knew these boys had some serious partying experience, and terrified for my personal safety, I made plans with a girl down the hall to hang with her for the weekend.

It was Halloween, and on Saturday, my friend and I ventured to the upperclassmen apartments and competed with all the “sexy” cats, nurses, devils, and playboy bunnies to be first in line for the keg.  I had teased my then-curly hair as big as possible, wore an obnoxious amount of make-up, and called myself an 80’s girl.  And that 80’s girl… well, she got pretty drunk.

I don’t remember much from that night, but I vaguely recall arriving back to my dorm, screaming down the hallway and pounding on each and every door because I couldn’t remember what room was mine.  Eventually, Kathryn came out of our dorm, and led me back to our room. 

“You need to go to sleep,” I remember her saying.  “My cousin Jeff is already in your bed, but just get in with him… he won’t care.”  I didn’t even hesitate.  Into my bed with the cute stranger I went. 

The next morning, and I DO remember this… Jeff and I awoke at the same time.  We’re in a college-size twin bed together.  He didn’t have a shirt on, and I was still wearing my hideous makeup from the previous evening. 

“Um, hi.” I remember saying, trying to remember how this boy and I ended up in my bed together.  We were both utterly confused, searching our hungover brains for reason as to why the situation was happening.

And that was the beginning of Jeff and Pam’s romance.

Friday, August 3, 2012

Hearing and Healing

A couple of weeks before my surgery, a colleague stopped me as I entered the room. 

"Can I say something to you at the risk of being inappropriate?" he started.

I braced myself.  You see, this particular colleague is inappropriate on a regular basis, peppering everyday pleasantries with mentions of genitalia and orgasms at every chance he gets.  He is also Santa Claus... literally, his side job is Santa at the mall, and I tell you this because I think it makes for an amusing visual as I continue my story.  Anyway, the fact that he was WARNING me of potential inappropriateness was terrifying.

"You look radiant!" he continued.  "Your aura... it's a BEAUTIFUL, BRIGHT BLUE!"

And that was all.  I exhaled.  It was nothing compared to what Horny Old St. Nick is capable of, and while it's questionable if he could really "see" my aura, I chose to believe him.  Yay for me and my beautiful blue radiance!

Oddly, it was the second time that week someone had commented on my "energy."  I had met a lovely woman- who happened to be a doctor- and she told me she sensed some strong spirituality and power that lived not only in me, but also in my daughter, Claire.  Of course, I LOVED her medical opinion and immediately called  my husband to inform him of my superpowers.  I think he laughed.

Though Jeff wasn't impressed, I found the whole energy-detection thing intriguing.  I've always believed if I put good energy out in the world, eventually, good will come back.  I KNOW this, but it's hard to do, and sometimes, especially a few days before my period, I lack control and my nasty energies unleash themselves all over the place.   I want more healing and good in my life, and I'm not ashamed to admit I need help.  So this past week, I scheduled my very first Reiki appointment.

According to the pamphlet I grabbed, Reiki (pronounced Ray-key) is a name given to a system of natural healing, where a practitioner gently places his/her hands non-intrusively over a person to realign energy centers of the body.  In the pre-session consultation, I told the Reiki Master I wasn't sure if I was opening myself up as much as I could to my new world of hearing.  This might seem odd (why would I want to block my new ability?), but I was noticing, for example,  I could hear the phone one day, but then the next day I couldn't.   I would know it was ringing because I could see the phone blinking and I would pay close attention.  OK, RING, I heard you yesterday... where are you NOW?   And nothing.

I feel like my brain can be overly cautious and tired, and sometimes, when sounds approach, she can be hesitant to welcome them.  As she gets used to them, she might allow one or two sounds to come in initially, and after warming up a bit, maybe she'll host a few more the next day.  But if she's tired, she's probably going to keep to her quiet self.  My hope is that eventually, my brain will open her doors to a big sound party, stop over-thinking, and just relax.

And that's why my bright blue aura and I gave Reiki a shot.   I want to be open to the possibility of my new capabilities.  And I enjoyed Reiki.  It was relaxing, and though I could hardly feel the practitioner touching me, I DID feel warmth, out-of-nowhere shivers, and at the end- SWEAR TO GOD- my implanted ear let out a little POP.  

My cochlear implant journey is a story about HEARING, but it's also about HEALING.  It's a story about sharing my truth, finding my inner power, and aligning myself with who I am meant to be.  And it's a very spiritual journey, only instead of Jesus or Buddha, at least so far,  I'm stuck with a naughty Santa pushing me in the right direction.

Wednesday, July 25, 2012

Thank you, Thank you Dunkin' Donuts!

For several years now, I've been running on Dunkin.'

My love affair with Dunkin' Donuts became serious after I had my daughter, Claire. Though I have always liked coffee, I used to be able to take or leave a cup in the morning, and I was not particularly partial to any brand or shop.  Once I became a working mother of two, however, coffee became a necessity, and if I didn't have it, my chances of having a good day were minimal.

My local Dunkin' Donuts is within two miles of my home, and my addiction intensified after experiencing the intoxicating joy of my local drive thru attendant, a blonde and smiling woman my friends and I have come to refer to as "Thank you, Thank you."  Why?  After handing over my money for my necessary morning drink, this woman- who I've since learned starts work before the crack of dawn- cheerfully leans out the window and gives me a glee-igniting smile and wave before saying her signature, upbeat "Thank you, Thank YOU!"

It is the BEST, and I.  LOVE.  HER.

About a year before my surgery, my trips to the drive thru window lessened.  Even in rain and snow, I started to park the car and walk into Dunkin' Donuts to place an order instead of go through the drive thru.  Soon, I was pretty much avoiding the drive thru altogether, which was often inconvenient and time-consuming. As I noticed my hearing declining, the experience of the drive thru- and most experiences in my life, for that matter- became anxiety-provoking.   Receiving my coffee from Thank You, Thank You had always been so fun, but it was no longer the same, and I was plagued with insecurity about not being able to hear the voice over the speaker.  It was yet another reminder that I couldn't perform such an everyday task, and it depressed me.

Since my surgery, I have visited my local Dunkin' Donuts several times, and I have tried the drive thru once again.  In the beginning, it was HORRIBLE, and I would end up pulling the processor off my ear, sometimes abandoning the speaker to give my order at the window.

But I'm improving.   Even though I don't hear each word Thank you, Thank you says over the speaker (or whoever is working the window for that matter), it's getting better.  MUCH better. (Also exciting, though irrelevant to the story, is that I recently purchased an iced coffee koozie from DD.  It's awesome.  So I now have coffee, koozie, drive thru, Thank You, Thank You, and I'm hearing.  WINNING!)

So today I was driving home from a work meeting where I sat among approximately 100 colleagues in an echo-filled hotel conference room non-stop for seven hours.  It was a lot of voices- A LOT of noise- but to date, it was the BEST I have heard at a meeting.

When it was time to leave, I welcomed a brain break.  During my commute home, I took off my processor in need of some quiet.  My ears continued to ring throughout my drive (a common occurrence after a few hours of noise), but I was still given some respite from hours of constant sound.

Tired, I decided to visit a Dunkin' Donuts on the way home for a little pick-me-up (not Thank You, Thank You's location, sadly, but I don't think she works the evening shift anyway).  Pulling up to the speaker, I waited.

And waited.

"Hmm," I thought to myself, "I'm not used to visiting the drive thru this time of day, so I wonder if maybe the staff person doesn't stay by the window as much as a morning attendant might.... Oh WAIT!  My PROCESSOR!"

As quickly as I could, I put the processor back on my ear and sure enough, there was a voice: "Can I take your order?"

When I got to the window, I asked the pretty teenage girl if she had been talking to me for a while without me responding.

"Yes," she said smiling shyly.  The old Pam would have been embarrassed, but I just laughed.  I then told her about my surgery, and still laughing, I told her how nice it was to know the implant was, indeed, working.  She laughed too, and told me she was happy for me.  

Driving away, a smile on my face, I was once again reminded that I'm moving forward in my journey in so many ways.  I said a prayer using one of my favorite phrases: "Thank you, THANK YOU!"


Tuesday, July 17, 2012

Applauding Small Victories

It’s been about two weeks since I wrote what I’ve come to refer to as “Pam’s Pity Party Post,” a hearing impaired bitch-fest, if you will, regarding my frustrations adjusting to life with a cochlear implant.  Venting over the Internet proved to be very cathartic (Thank you, Readers, for waiting politely as I revitalized myself with a good, old-fashioned temper tantrum).  Once I let go of some of my frustrations and anger, I am happy to report good moments returned to my life.

As my Facebook friends might have seen, I recently posted a status that yielded nearly 100 likes (Thanks, Facebook Friends).  In an abbreviated version of the following story, I wrote how my children, Colin and Claire, had their first piano lesson.  The lesson took place in an old music hall,  and I watched with joy as the kids happily familiarized themselves with the keys and notes of a beautiful, restored 1904 piano.  I think I was so pleased that they were so enthusiastically engaged in the lesson that it took me a few minutes to be conscious of my hearing powers.  As Claire’s fingers slowly paced up the keyboard, I realized I didn’t stop hearing once she got to the upper third of the keys.  In the past, I’ve had enough musical knowledge to “know” what note comes next on the scale, and to be able to hear it in my head, even if I can’t sing it.  (And trust me- when it comes to a high note, I CAN’T sing it.)  In the past, I was also accustomed to hearing the “tap” of pressing down a piano key (think of pressing a key on an electronic keyboard when the keyboard isn’t on).  But this time, I realized, I was hearing actual tones—crisp, clear, non-robotic, and in fact, pretty tones reaching higher and higher in frequency.  Once I realized what I was hearing, I informed the kids’ music teacher that I was new to the high notes, and he allowed me to prolong my moment by pressing some  more keys and even letting me experience the cymbals of a drum.  When presented one by one, I experienced each unique tone like never before.    It was a victory… a small success that my cochlear implant could happily surprise me after a long cycle of frustration.   I was grateful.

Gratitude is a wonderful feeling, but sadly, it can be so short-lived once positive thinking is removed.  After posting my tale on Facebook, I experienced a mild “Oh, how nice” kind of feeling that I had so much support, but there was a part of me that felt as though I was lying.  Sure, hearing the upper register on a piano was new and exciting in the moment,  but that’s not what I wanted from this surgery.  It didn't make me successful.  When I go out with friends, or participate in a meeting, I’m not interacting with a high G note, after all.

Speaking of interaction, however, I DID have a good CI outing on a Saturday with my husband Jeff.  We were at a local restaurant, seated at an outdoor table while a very talented acoustic singer performed near our table.  Pre-surgery, I would have loved listening to the music; unfortunately, that is all I would have been able to listen to, as the background noise of vocals and guitar would have surely dominated over any conversation at the table.  The way I was hearing was different that evening, and by playing with my CI settings and volumes, I was able to come to a comfortable place where yes, the music was there, but so was Jeff.  We could talk.  I was still looking at him, and I was still focused, but we could do it.  Another thankful day, another small victory.

A week after, a group of friends and I returned to the same restaurant for a girls’ night out.  Once again, outdoor seating, and once again, an outdoor performance, although this time it was a band.  I had even suggested the spot because of my previous weekend’s success, boasting to my friends that I would be able to hear them!  And I could… sort of. 

Dealing with four different female voices proved to be a challenge; though one setting might be ideal for Tara, the volume wouldn’t be right for Michelle.  Though the sensitivity level would be perfect for Carrie, somehow I kept thinking Kim said “cranberry” when she was really saying “grape.” (I know... Not even CLOSE). With more noise surrounding me, there was so much more to consider, and the ability to hear all sounds harmoniously presented quite a challenge.  It was certainly not the same as a single note, or one familiar voice.  My brain struggled to keep up.

My optimistic self tells me this is to be expected, and little by little, my brain will allow more complicated noise to be deciphered.  After all, I didn’t initially hear the blinker in my car, or the beep when the microwave turns off (I’m still startled every time it beeps, by the way).  On most days, these small collection of sounds have become a “new normal," an experience I would have never had before.  Still, my regular, perfectionist, impatient self typically ignores those moments and instead wonders why this whole confusing process has to be so damn annoying.

I TRY to remind myself that not every victory has to be the result of some complex, Olympian task.... I really do.  Still, I struggle with Pam’s perfect expectations, not just when dealing with my CI, but when dealing with life, in general.  Take my to-do list, for example.  Too often I won’t finish it.   I might get around to finally folding the laundry (a small victory in itself), but instead, I’ll brood over how I failed to weed my front yard, failed to make dentist appointments, failed to email my friend, failed, failed, FAILED.  Even when I heard the high notes on the piano- quite possibly the first time I had EVER heard those notes- my gratitude quickly faded when I turned my focus to how much I was still missing in conversation, how difficult it was to talk on the phone…  Failure, failure, FAILURE. 

Please remind me during my next pity party to applaud the victories, big or small, to remember the beauty of a single high G note, and to smile and say THANK YOU.  Being grateful just feels better.   

Now what small victory are YOU grateful for today?

Sunday, July 1, 2012

Beware: I'm back.

Moving forward during my recent family vacation.

I have just returned from vacation.  Hours ago, I arrived to my home after a week at the beach with my family.  That was one vacation.  The other break, I realize, is the one I’ve allowed myself from the blog.  I feel like I’ve had a lot to say, but sometimes when there is so much going on, it is difficult to focus on a single topic.  Instead, I’ve kept my feelings to myself, a decision that has probably stifled my healing as I come to terms with life with the cochlear implant. 

Much has happened since I’ve last written.  I’m now a contributing writer for two business newspapers and loving it.  I’ve also started another job, working three days a week as a community outreach coordinator for a nonprofit organization.  The professional opportunities that have come following my surgery not only allow me to do what I love,  but I also have much more flexibility than ever before, enabling a greater balance between family and work.  Life should be good, and often, I’m stubborn and don’t want to admit that life isn’t as great as I thought it would be at this point post-surgery.  My hearing should be improving day by day, little by little. 

The truth: I don’t see much improvement, and I’m disappointed by my inability to provide a happy ending to my journey.    

I had a week or so when my optimism was growing.  A few friends told me they noticed a difference in interacting with me.  I felt as though I was getting closer to my goal of understanding noises around me, even if I was slowly crawling to get there.

I’m not sure what has changed in the last three weeks or so, but I feel like a failure.  I’ve met with the audiologist, and she knows my concerns.  I can hear the sounds, but I still can’t make sense of them.

This past week, my family rented a condo in Ocean City, Maryland with my husband’s siblings and parents; at most, we had a total of fifteen people in the house at one time. This vacation had been planned for months, so I knew prior to surgery that two months after, I’d be at the beach.  With so many recipients telling me that they had seen such drastic improvements in three weeks to a month to two months, I was certain this vacation would be amazing. 

All my life, I had struggled at the beach.  While the ocean breeze and the waves crashing is relaxing background noise for most people, for me it was always the only noise I could hear, masking the speech of those around me and prohibiting me from participating in casual conversation unless I gave my utmost concentration, which of course, I always did, leaving me exhausted and completely un-relaxed.

I had envisioned this vacation at the beach to be different—easy and breezy, for once in my life not having to think about hearing. 

Unfortunately, I knew on the first day that I was overwhelmed with all the voices under one roof.  I would turn down the volume but it was still loud, and the cacophony of noise remained chaotic and unclear.  Hearing-wise, it wasn’t what I had hoped, but also comfort-wise, I was having difficulty.  We were fortunate to have beautiful beach weather, but it was HOT, and the processor sat on my sweaty head uncomfortably, leaving me itchy and annoyed, and since I’m unable to get the processor wet, I had to be particularly careful around water.  Additionally, my ability to put my hair up in a casual beachy ponytail was not so easy; besides worrying about my physique in a bathing suit, I felt insecure about the mini-computer connected to my head.  Not exactly the summer look I was going for.

Bitter emotions bottled up inside me until Day 3 of the vacation when midday I started to feel sick.  My stomach hurt and my head ached, and I excused myself to lie down in my dark, air-conditioned bedroom.  Jeff came to check on me, questioning if I had “too much sun.”  I realized my body was responding to the bitterness I’d been holding in. 

Quietly, I admitted what I had been thinking for awhile: “I shouldn’t have got the surgery.”  There.  I had said it.

Jeff rubbed my back for a minute as I drifted to sleep, actually feeling relieved that I had finally vocalized my fleeting thought, hoping that it would now go away, allowing gratitude and perseverance to guide my thinking from that point forward. 

After the declaration to Jeff, I  was able to enjoy the trip, even with my crappy hearing and the itchy processor.  I decided not to focus on it, and just do the best I can.  Most of the time, that meant avoiding conversations and just relaxing on my own—not such a terrible thing at the beach.  And sometimes, I didn’t wear the processor at all (I know fellow recipients and my audiologist will not agree with that move, but briefly, ON VACATION, I wanted to forget it existed).  Temporarily, I coped.

Sunday, May 20, 2012

One Month In: Good Days, Bad Days, French Lit and Modern Family

Hard to believe it has been an entire month since my surgery. 

Of all the occasions thus far, my first mapping day proved to be my most victorious situation yet.  Noises surrounding me seemed to be normalizing; instead of hearing voices comprised of 95% beep and 5% robot, I transitioned to around 70% voice and 30% robot.  The latter mix has been much more tolerable.

Since my audiologist, Dr. Sharon, told me I was doing so wonderfully, I was fired up to rehabilitate and to truly start hearing.  I had previously purchased an app on my smart phone; though designed for children, I figured it couldn’t hurt for me to try it.  The app is called Hope Words and it is made by Cochlear, the company that also manufactures my implant.  The premise behind the app is that the user can select a letter of the alphabet and the program will go through various vocabulary words and pictures for a particular sound. 

When I was first activated, I would go through the words and they sounded much too similar to identify.

Apple.  WOOT WOOT.
Bear.  WOOT.

Sometimes, I wouldn’t even get the syllable count right.  My children would select a word and with little sound recognition other than WOOT, I’d try guessing.

“Um, ball?”

They’d laugh and tell me I wasn’t even close. 

“Banana, Mommy, Banana!” Colin would yell through laughter.  Funny for him, I guess, but I was beyond frustrated.

The day of the first mapping I went through a lot of the words again, and I felt like I was doing better.  Apple, for example, started to sound like “Ah-eh,” which is more like apple than “WOOT WOOT” anyway. 

My confidence was really high on mapping day, and after the kids went to bed, I asked Jeff to cover his face with a magazine and to state completely made up, ridiculous sentences, removing context altogether.  This was quite a task for Jeff who isn’t exactly the nonsensical type, but with time and practice, he was talking about elephants wearing clothes and pooping birds driving cars, and really anything that failed to give me context clues or lips.  I wanted to really see if I was improving. 

I was repeating most everything accurately, and Jeff decided to advance my rehabilitation practice to the next level.  I was thinking more along the lines of Dr. Seuss, but leave it to cerebral Jeff to read aloud a selection from French Literature.   As he recited passages from Remembrance of Things Past by Marcel Proust, I was soon repeating phrases like “almost the purple hue of tilled fields in autumn,” and my growing self-assurance was turning into giddiness.  IT WAS WORKING.

To really test how well I was doing, however, I removed the implant processor (without the processor I am deaf on the right side), and we tested my abilities again, this time only my left ear (with its natural hearing) listening.  I expected I would do terribly, a true testament to my implant’s new found success and glory, but oddly enough, I was still doing pretty well.  What the heck was going on?  So much for my giddiness.

More than a year ago, as I slooooowly began to accept my hearing impairment, I attended presentations and support groups.  I had avoided such groups in the past because I didn’t think I would find anyone who would relate to me; I could hear some sounds, after all, and I didn’t wear hearing aids or know sign language.  I also figured I’d be the youngest person there, and sure enough, at my first support group, all of the attendants were a good thirty years older than me. 

Still, there was an instance in one of those groups when a husband was talking about his wife’s declining hearing.  He said, “Some days are better than others… she has good hearing days and bad hearing days.”  That statement was particularly validating for me.  For years, I referred to the good day/bad day philosophy, but wondered if it was all in my head.  For example, I especially noticed my good days in professional situations.  These were days I was just ON, and I would wonder if I was defying science and somehow re-growing hair cells in my inner ear.  And then other days, I would experience the opposite end of the spectrum.  I’d be completely lost, holding back tears (or maybe letting them flow freely depending on how hormonal I was on the bad day), and certain that I would be completely deaf by the following morning.  The support group attendees assured me I was not alone; they too, had good hearing days and bad.

I hate to downplay the success of my first mapping (I can already hear my readers telling me to be kind to myself), but looking back, I think Mapping Day was a really, really good hearing day.  I know the mapping  substantially reduced background noise that previously cluttered my soundscapes in the implanted ear, but I also feel that my left ear and all of its natural hearing was just ON that day.  Together, my left and right ears were little champions.  

But bad days soon arrived.  Following my first mapping, I attended an important meeting of approximately fifty people and it began with attendees greeting each other while grabbing coffee and pastries.  I entered the room and it was LOUD.  As people started talking to me, I was struggling to make out words. 

“Hold on,” I told a friend during an attempted conversation as a I fished through my bag for my implant’s remote control. 

Yes, I am now operated by remote control.  Let me pause to explain the controller, because this feature is a pretty fascinating component of my new status as a bionic woman.  With the remote, I can change the implant’s settings.  Right now I have access to four different settings designed for different listening situations- everyday, noisy, focus, or music.  I can also adjust the volume and the sensitivity on a given program.  The greater the sensitivity, the larger the range.  So if my sensitivity is on level twelve, for example, it’s more likely that I will pick up on noises several yards away than if I had it at level six.  In a noisy room, it can be helpful to reduce sensitivity to be able to hear the person speaking right next to me. 

So anyway, I tried to make adjustments to get to a comfortable setting, but no matter what I did, I could not understand.  As the meeting progressed, I comprehended very little of what was being discussed.  Another moment of defeat and another bad day.  My pity party was brief, though; I realized I just needed to keep practicing. 

I’m also constantly reminding myself that I have to work my implanted ear.  I am still  relying on my left ear- the ear that sounds “normal” to me- and my implanted ear isn’t even breaking a sweat.  I’ve tried cramming an ear plug in my left ear, but it’s no use.   My left ear (“the little ear that could,” as my one friend calls it) still tries to compensate for the implanted ear. 

A way to work through this is to connect an audio cable directly to my processor so that my implanted ear is forced to try and make out dialogue without assistance from the other ear.  It’s particularly effective while watching television.  I have one friend who rehabilitated with the help of 30 Rock, and another who chose evening news broadcasts.  Equipped with a new Hulu subscription, I decided that Modern Family would serve as my rehab selection.  Let me just say that I am thrilled with my choice.  First of all, Modern Family is effing hilarious (How funny was Lily on a leash at Disney Land?), and second, I have the diverse voices of adults, kids, men, women, gay, straight and even a thick Latina accent to challenge me.  Though I’m not able to understand much without captions, occasionally I catch myself understanding a word or two without looking.  In any case, the more I listen, I realize that the world is quieter and more difficult to understand without the implant—another minor victory considering I wanted to throw the device in the PCB-laden Hudson River when I first started wearing it.

One month in, and I’m still waiting for my amazing “I can’t believe I heard that” CI moment.  On the flip side, I haven’t experienced a moment of agony either, so I remain optimistic. And hey—I’ve already realized I prefer Modern Family over French Literature.    Slow and steady, I progress, continuing my journey of both good days and bad.

My rehabilitation team

Tuesday, May 8, 2012

Breaking Bad Habits: My First Mapping

A mother and son plagued by bad habits
Yesterday marked another cochlear implant milestone: the first mapping appointment.  This appointment is designed to “fine tune” the device so that I have the volume, clarity, and programs that I need to successfully hear.  I was so ready.  After my horrific activation, and the very challenging, chaotic and LOUD ten days that followed, I was very excited for this day.  It just had to get better.  It had to.

I will share the experience with you, but first a story.  (I promise there is relevance.)

My eight year old, Colin, has been making some interesting behavioral choices lately.  One of the repeat behaviors is his perpetual need to talk over adults when they are speaking, both at home and also at school.  I’m sure he is excited to share his views of the world with his teacher and classmates (he’s always been conversational and philosophical) but still, we all learn at some point or another to SHUT UP.

Each time he gets in trouble, he has a plethora of excuses as to why his choice of action made logical sense.  His most recent explanation included an indifferent shrug of the shoulders and the phrase, “I can’t help it.  It’s my habit.”   Wonderful.

Regardless of punishments or lost privileges that occur because of Colin’s so-called “habits,” it doesn’t seem to sink in when he is wrong.  Unfortunately, a simple “Don’t do that” means nothing to him.  He is a tricky breed, and to teach him lessons, I have to match his sneaky cleverness.

So I decided to tell him about a habit I used to have.  Throughout elementary, middle, and high school, I DREADED the required mile runs.  HATED THEM.  And I would tell people- and myself- that I was not a runner.   I explained to Colin how I used to not be able to breathe after one lap, how I used to tell the teacher I was hyperventilating... I just thought those runs (and physical education, in general for that matter) was cruel punishment for a song-and-dance child like myself. 

“But Mom,” Colin said, “You probably could have done it.  You’ve run thirteen miles.  You probably could have done one.”

Yes, it’s true: Fast forward to adulthood, and the girl who couldn’t run a mile, who would have done ANYTHING to be excused from the physical fitness test, actually cheerfully trained for a half marathon a few years back and completed it.  I’ve continued running- and liking it- ever since.

“The point is,” I said to Colin, “Before running the mile, I would tell myself that I wasn’t going to be able to do it, that I wasn’t athletic, that I wasn’t going to be able to breathe. My habit was that I told myself I was not able to run. But I eventually changed my habit.”

He stared at me in his kind of spacey, but maybe pensive way, and I hoped he was my absorbing some nugget of wisdom from my little parable.  Interestingly, I didn’t allow my own lesson to sink in until a few hours later as I was thinking about the day’s events.

A few hours earlier, I was sitting in my audiologist’s office, my implant hooked up to her laptop during a hearing test.  As she prepared, I told her about the challenges since activation.  I explained that I was not able to hear the oven timer or phone when standing right next to them.  I told her how at a party, I was able to identify the pattern of my son’s footsteps as he rode a scooter several yards away, but that I wasn’t able to hear the person talking right next to me.  I told her about the headaches, the tinnitus I developed (SUPER ANNOYING ringing of the ears), and how the world since activation was just a constant hum and squeal of noises that made zero sense whatsoever.

The hearing test began.  As the beeps changed frequencies and volumes, I still heard them.  At times I thought I was imagining noises, but the audiologist assured me that I was accurately hearing the sounds.  In fact, there was one beep that made me wince. 

“That was one of the three highest frequencies in the test,” said the audiologist.  “You’ve probably never heard that before.”

In any case, I did really well.  And the test was really important; it indicated that my implant was using 30 levels of power above what I needed.  The audiologist explained that often, recipients progress to 5 levels above after activation, but at 30, I was receiving WAY TOO MUCH input and volume to the point it was confusing and uncomfortable.

Dr. Sharon made adjustments.  Incidentally, I called Dr. Sharon “Susan” in a previous post, and was even addressing emails to her this way.  So embarrassing.  I really should know her name since my life pretty much depends on her!  Anyway, Dr. SHARON  started speaking to me and immediately, the volume was tolerable.  She sounded a bit robotic, but not too bad.  It sounded like speech at least!  I was still looking at her as she spoke to me and had no trouble understanding her.  She told me she was going to say the days of the week to me and I should repeat them.  She then put a large black circle in front of her mouth so I couldn’t see her lips. 

She began, “Thursday.  Thursday.  Monday.  Monday.  Wednesday.  Wednesday.  October.  October.”  Dr. Sharon was trying to trick me, but I still repeated all words correctly.

She then asked me a series of questions, her lips still shielded by the circle.

“How many children do you have?”  Two.

“What are their names?”  Colin and Claire.

“Where do you work?”  SUNY Adirondack.

“What color is Claire’s hair?”  I couldn’t get that one.  She went on to explain that it’s harder to understand sentences when a lot of the same sounds present themselves. 

“Of all of those, Pam, you missed just one!” Dr. Sharon exclaimed. 

“I know,” I started, “but you gave me context with the days of the week.”

“But you got October,” Dr. Sharon responded.

“Yes,” I went on, “but that’s a three syllable word and those are easier to identify than one syllable words.”

Eventually, Dr. Sharon interrupted my excuses to give me some advice.

“To make this work,” she said, “You have to trust yourself.”

She then told me a story of another patient who continuously excelled at her hearing tests, but still claimed she could not hear in “the real world.”  The woman was knitting in a chair one day and the television was on in the background.  As the woman stitched, she realized that she had been following the plot of the television program without ever looking at the screen.  The implant was, in fact, working!

I sat on my porch yesterday waiting for my mother-in-law to drop off Colin and Claire after school.  I heard the people across the street talking to one another.  I heard the cars driving by.  And then I heard some other sound I couldn’t identify—birds, maybe?  I was skeptical, though.  When have I ever heard birds?

“How’d you make out?” my mother-in-law asked as she approached the porch. 

“Really good,” I said, and then I paused suddenly.  “I might be imagining this but am I hearing birds?”

As robins flew overhead, my mother-in-law assured me that birds were singing- very softly, but they were definitely singing.

For as long as I can remember, I have told myself I can’t hear.  For years, I have avoided circumstances that relied strictly on my listening capabilities.  Many times, I wouldn’t even try to listen, certain that it was hopeless and I would fail.  I have continuously reminded myself that I am incapable- just like I was not a runner, and just like Colin can not keep quiet in class.  I guess even with the surgery, I haven’t quite broke free from my habit.  Once again I’m reminded to push my fears aside, work hard, and above all, TRUST that I can be the hearing person I’ve always wanted to be.

Tuesday, May 1, 2012

My Unforgettable Activation Experience

We survived.  3 days after activation, bucket-free and smiling at my son's first communion.

Remember how I claimed I had no expectations for the activation?  In fact, my exact words were, “Instead of high expectations, truly, I have no idea what I'm about to experience.”  I apologize.  I lied.

I did not believe I would go to the audiologist’s office and walk out understanding everything around me.  But I had excitedly daydreamed experiencing some minor improvement.  Nothing big, but maybe noticing a bird chirping, for example, or maybe a sound in the car, or possibly understanding a word or two said to me without having to look at a person.  

It didn’t happen.

On the morning of activation day, Jeff informed me that our five year old, Claire, was burning up with a fever.   Our original plan was for Jeff and I to attend the activation and leave Claire with her babysitter, but the fever obviously changed our plans.  I figured I’d get the temperature under control and Claire would just have to come with us.  Jeff then reminded me how our son, Colin, had wanted to attend the activation all along.  We discussed how pissed Colin would be once he found out Claire got to go and not him.  So we decided I would pick up Colin early from school so he could go too.  The activation would be a whole family affair.

Since this was a last minute decision, the school wasn’t prepared, so when I arrived to retrieve Colin (after putting poor, sick Claire in the car),  the office staff couldn’t locate him at first.  I was already behind schedule, and I started to worry we weren’t going to make the appointment, and in effect,  I wouldn’t be able to savor my blissful, miraculous moment for as long as I’d like.

When Colin came out of the school, he was totally confused and angry at me for surprising him.  So I was late, Colin was mad at me, Claire’s facial coloring had taken on a greenish hue, and I was also really thirsty.  When situations like this occur in my family, we have a special retreat we go to and our world becomes a more peaceful place: Dunkin Donuts.  Yes, I knew we were late, but I also knew my angst would be calmed with a hazelnut iced coffee. 

At this point, I was still only equipped with my left ear and its 20% hearing, so I couldn’t pursue the time-saving option of the DD drive thru.  I had to go in.

The kids requested strawberry coolattas; once I was in Dunkin Donuts, I gave my order, and the person behind the counter looked totally confused.  She finally told me why. 

“I’m sorry,” she said.  “I’m new.”  Of course she was new.

So Dunkin Donuts took longer than normal too.  At that point, I was definitely running late,  I was an hour away from the audiologist , and I still had to pick up Jeff at his office.

Then Claire announced she had use to the bathroom.  Sigh.  So I called Jeff and he decided to stand in the office parking lot so that as soon as we arrive, he could grab Claire, run her into the bathroom, and we’d be on our way as soon as possible.  And that’s what happened (Claire peed the fastest she ever had in her life), except that when Claire got back into the car, she accidentally knocked over her bright red strawberry coolatta.  Though I typically store extra paper towels and tissues in the car, I had just run out.  Coolatta was all over the backseat, Claire, and me.  But we had to continue.  Mama must hear!

Just when I started to think we were going to be on time for the appointment, my maternal instinct kicked in.  I JUST KNEW something bad was going to happen.  I turned around and asked Claire if she felt alright, but it was obvious she felt terrible.

“Are you going to throw up, Claire?” I asked.  She nodded and it happened.   EVERYWHERE.

Remember, I had no paper towels, and no spare tissues.  Luckily, I had a blanket I had packed for the car ride, so we were able to clean Claire up a bit with it.  I felt horrible for her because I knew she was trying to be strong.  And I selfishly admit, I was also feeling terrible for me.  This was supposed to be my happy day, a milestone I would happily remember… and it was falling apart.

When we got to the audiologist’s office, Colin and I went in while Jeff stayed with Claire to help clean her up some more.  The staff wanted me to go in the office right away, but I explained I was waiting for my husband and daughter to meet me because I wanted them to be part of the activation too.  I also explained that we had “quite a trip,” and told them about Claire getting sick.  Right on cue, the office door opened, Claire walked in, and she puked right on the carpet.  Just awful.  I could not believe what was happening.

In the mean time, I still had to get activated.  The audiologist had fit me in her very busy schedule because I had made a special request.  Being that we were at an office specializing in ear, nose, and throat issues, the staff had much professional experience working with patients who struggle with balance and motion sickness.  They had many vomit materials ready, luckily, and Claire was given a “special bucket” for the rest of the visit.  The whole family, and the bucket, sat together in the office as the activation appointment started.

Another part of the original activation plan was that Jeff was going to record the event.  If you haven’t seen an emotional youtube video of a recipient’s cochlear implant activation, I strongly recommend them.  I can watch them over and over again and I cry every time.  They are just the most beautiful moments captured on film, and prior to my activation appointment, I anticipated that I would capture my own experience complete with happy tears and praise to God.   However, with Jeff now having to watch Claire closely, Colin had filled in as the day’s videographer.   

The audiologist started with a simple hearing test.  I was instructed to raise my hand when I heard a beep.  It was very simple, and I heard tons of beeps.  And then I heard a sound I had never heard before.

“Was that a high pitch?” I asked Dr. Susan. 

It was—for the first time I can remember - I heard a very high pitch tone during a hearing test.  And the happy tear rolled down my cheek.  I then recalled we were documenting this on video.  I looked over at my cameraman, but I guess he had found a game to play on my iPhone that was much more exciting than his filming responsibilities.  Oh well.  In any case, that was truly the “high note” of the appointment for me.   It was all downhill from there.

After the hearing test, it was time for the real activation—the first moments I would hear voices with the device.  Dr. Susan told me it was on, and Colin started talking to me.  On my left side (the unactivated ear with its natural hearing), I heard what I always have-- Colin’s voice.  And on the right side, I heard total bizarreness. 

I had heard that during activation, voices could take on a robotic quality, but it wasn’t as if Colin was talking in a “robot voice.”  It didn’t sound like “speech” at all.  It was more like a synthesizer or some very odd soundtrack to a science fiction movie.  And then the weird tones started to layer on top of each other as more sounds came in, though I didn’t know what they were—maybe the audiologist’s phone, or the tapping on a desk, the crumpling of paper.  Whatever those sounds were, they just sounded like keyboard notes.  Dr. Susan talking: a keyboard note.  Cars outside driving by: a keyboard note.  Snapping my fingers: a keyboard note.  And meanwhile, my left ear and its 20% hearing was trying to hear OVER all of this ruckus to make sense of the world.   And my reaction to my new world of sound was, “What the HELL is THIS?”

Dr. Susan instructed me that she would continue to talk about my implant materials as I got used to the device.  So she was talking and my left ear was hearing her, while I read her lips (as I always have) but the activated ear was still hearing nonsense, and I started to feel incredibly defeated.  Dr. Susan continued talking but I wasn’t following.  My focus was slipping, and I was starting to feel as though I had screwed up. In my implanted head, I asked myself: What have I done?

When Claire wasn’t vomiting (Yes, the bucket was in-use during the ENTIRE appointment), Jeff was paying attention to Dr. Susan. They both knew I was totally overwhelmed, as well as disappointed. Not only could I not hear, but I couldn’t even keep the damn device on my head.  The magnet that came with the processor was not strong enough for my thick skull, so we had to upgrade to the next level.  As I struggled to put on the processor and it continuously fell to the floor, the ugly cry started.  My internal dialogue was telling me how bad I sucked at cochlear implants!  This was NOT my beautiful moment I had so desperately hoped for. 

As my sad-looking family left the appointment, my sobs reached a new level of ugliness as we headed to our car.  Jeff, per usual, remained calm, gave me a hug and told me he accepted that this was a common scenario for an activation (minus the spilling coolattas and pukey kid).  He reminded me: It will take time.

It’s been four days since the activation and for the most part, I’ve worn the device when I am awake.  My one success is that I am doing much better at keeping the strong magnet stuck to my thick-skulled head. Other than that, I’m still awaiting my miracle moment. 

For example, as the oven timer counted down on the stove yesterday, I waited anxiously to hear that high note.  3, 2, 1… and… nothing. 

At my in-laws, I saw the kids with their hands over their ears as breakfast was being cooked.  I turned to see, and my mother-in-law hurried over to turn off the smoke alarm.  I didn’t hear it.

I don’t want to lead readers to believe that my implant doesn’t work; the first hearing test proved that I was not given a defective implant, and I hear a difference in my environment each time I turn it on.  The reality is that for years, without knowing I was doing it, I trained my brain to make sense of the world with the limited hearing I was given.  Once again, I have to work to train my brain to make sense of all of this new information.  And the audiologist will help.  My first mapping appointment is May 7th, and this is when Dr. Susan and I will start to fine-tune a program that is unique and individual to me.    

Once again, I am struggling with my unrealistic expectations.  My activation was not the emotional, youtube-ready grand finale I desired, and at the time, it hurt pretty bad.  I understand now that it was a step forward toward the happy ending I have to believe I will one day experience.  And the journey continues, one day at a time.