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.

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.

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?

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.

Surgery Day

Jeff and I post-surgery with my new friend, "Jock Strap"

When I woke up in the recovery room, my first thought was: "It's over?" 

I touched the top of my head and was surprised- and pleased-  to not be wrapped up in bandages, turban-style, as I anticipated.  (After consulting with other recipients, I feel quite blessed that I received the prestigious velcro bandage that I affectionately nicknamed the “jock strap.”  It’s easily removable and pretty comfortable.  I got lucky.)

While touching the bandage, I immediately thought, "Can I still hear?"

I started banging the bed, clapping my hands, snapping my fingers... making any possible noise to see if my right ear got anything.  In my drug-induced state, I was certain the right ear was still hearing.  I even grabbed the male nurse next to me and told him, “Hey! I think I can still hear!”  I then looked up to God and said, "Thank you."  And lastly, I looked around and realized other patients were in the room with me, also trying to recover before heading to post-op, and being forced to listen to the young woman with a jock strap attached to her head, happily clapping and snapping. 

I also realized it was about 4:30 in the afternoon, which meant I had not seen Jeff for over three hours.  I didn't even remember saying goodbye to him, but when I woke up, I wanted to see him immediately.  The drugs made me comfortable, and I was also very loving.  I told the nurses how nice they were several times (I wasn't making it up-- they WERE nice), and I kept asking for my husband, telling the nurses I love him and that he's really sweet and handsome.  (That IS the truth, though the drugs certainly provoked me to be more candid than usual with complete strangers).  Luckily, Jeff and I were reunited before 5 PM, and he informed me per his discussion with the surgeon that everything had gone perfectly.  I was feeling great.

Although surgery day was a bit of a blur, I can recall some specific memories before heading off to the hospital.  One of those times is when I said goodbye to the kids; if you’ve been following the blog, you know I’ve pictured this scene in my mind repeatedly and that I’ve cried instantly when thinking about it.   As a mother, it was a very touching moment for me, but I didn't break down crying on Colin and Claire’s little shoulders like I pictured.

The individual goodbyes from the kids were reflective of their personalities.  Claire was first.   She wrapped her tiny arms around me and said, "I love you, Mommy, and I hope you have a very good surgery."  Then she sweetly put her mouth next to cheek and just for my right ear, she whispered, "I love you, Mommy."  She walked out the door to her ride to school, blowing me kisses and mouthing "I love you" until she got in the car.  She is the best.

Colin was next.  He hugged me too, although it was more like ME hugging HIM, and that was expected with an eight year old boy.  He mumbled he loved me, but the best part about Colin's goodbye was his honestly.

"I don't get why we are acting sad when this surgery is going to make you hear BETTER!" he said.

It was a good point, very Jeff-like, and a reminder of all the blessings to come.  Colin wasn’t worried because he realized in time, not just my life, but our lives were going to improve.  Colin's not the kind of kid who is going to whisper sugar-coated Hallmark card phrases to me (that's what Claire is for, after all), but Colin can be very wise.  His perspective cut through the anxiety I was feeling and made me remember the bigger picture.

It wasn’t soon after I said goodbye to Colin and Claire that Jeff and I were off to the hospital.  And remarkably, I was quiet, calm… I didn’t cry.    Once we arrived, things moved quickly.  After putting on the hospital gown and a bit of a wait, I remember Jeff telling me it was “show time,” though I don’t specifically recall saying goodbye to him.  I somewhat remember being wheeled into a room where it seemed as though there were nurses everywhere preparing me for surgery… one was putting massage-like things on my legs, one was putting sticky circles and wires on my chest…   I remember seeing my name on a whiteboard in that room, and I remember saying a prayer for all the people who had offered so much love and support to me over the last few weeks.

The next thing I knew, I was making a lot of noise in the recovery room and telling people how cute my husband is!  And I was so grateful… I just knew when I woke up that I made the right decision to go through with the surgery.  I just knew I was going to be okay.

Almost 48 hours later, I’m still okay.  I have experienced many of the normal side effects from the procedure.  I’ve had a hard time eating (my jaw is sore) but smoothies are one of my favorite foods anyway!  My taste buds have also changed; I was warned of a metallic taste in my mouth, and sure enough, the flavor of food is pretty dulled.  In the first 24 hours, I had very minimal pain, but as Day 2 approached, swelling increased.  In addition to looking a bit like a hobbit, my head and neck also hurt.  Thank God for pain meds, and don’t worry!  I am taking them regularly!

Also, as soon I was given the okay to take the jock strap off, I had Jeff put a headphone in my right ear and play a song without telling me what it was… and I got nothing.  So, as I was warned, I assume I am officially deaf in my right ear.  What is unexpected, however, is that I really had to perform the headphone test to know for sure.  It is amazing how much my left ear compensates (which is why I thought I was still hearing out of the right side in the post-op room).  Also remarkable is though I can’t hear sound out of my right ear, I still sense energy on that side.  It’s a strange sensation to explain but I spoke with a friend who is deaf and he understood what I meant.  I thought I would be sad to lose the hearing, but honestly, the circumstance just fascinates me!  As a blog commenter so eloquently put, my story is an example of losing first in order to gain. And I certainly feel I am gaining more than losing.  With your love and support, I've gained strength, courage, excitement, and an increasing sense of peace. Of course, I'll also be gaining a lot of sound in the right side soon.  I just need to heal a bit first.

The post-operation appointment is scheduled for April 24th and the activation appointment will be next.  In the mean time, I remain on pain meds with jock strap nearby in case I need him, and I send all of you much love and gratitude!  Thank you!

Some CI Education

When I shared my blog on Sunday night, my body was buzzing in fear and vulnerability.   The 24 hours following the post proved to be one of the most emotional days of my life.  As the comments from my friends, family, and even strangers poured in, I spent most of Monday ugly-crying tears of joy and asking myself, Why the HECK didn't I talk about this sooner?  Today I feel lighter, relieved, and all the more excited for the surgery and the future.  I can't describe what the supportive messages have meant to me.  I wholeheartedly thank all of you who are standing behind me in this journey. 

In the last month, I've had several people suggest I blog about my experiences, and they know who they are.   Thank you for giving me the push I needed.  I also want to thank Jennifer Thorpe, a cochlear implant (or CI) recipient.  (A side note: There is a whole new language and set of abbreviations that comes with cochlear implants.  I attended a CI presentation a few weeks ago and made the mistake of referring to recipients as implantees.  Some advice: recipients is preferred).  Anyway, Jennifer is also a mentor to individuals with hearing loss, and I originally "met" her through a website designed to support people struggling with their hearing.  In her mentor profile, she described herself as a mother, wife, and a big social butterfly.... I knew she was the mentor for me!  I wrote to Jennifer just this past Friday on facebook, admitting I was excited about the upcoming surgery but also pretty terrified.  She responded by inviting over fifty CI recipients to share their personal stories with me, and I was provided with great bits of information and advice.   For example, I learned my jaw might be sore following surgery and I should have ice cream and sherbet on hand.   Some described leaving the hospital with their heads in a "turban," or having a large "cone" over the implanted ear.  Lovely!  Needless to say, I have no plans of going out and socializing on April 18th.  My cone and I will be in bed with a hand packed pint from Stewart's!

Anyhow, the wonderful people who wrote to me not only provided  insight about the surgical process, but  also offered their friendship, love and prayers.  I hope that by sharing MY story, I can help somebody the same way their stories have helped ME. 

Of course, the blog has also elicited some questions.  My favorite so far has come from my younger sister, Mandy, who lives with an almost identical hearing loss to mine.  Like me, she has gone through school, career, and life without much hearing help. On Monday night, she instant messaged me.

"Can I ask you a question?" she wrote.  "Are you going to have to shave your head?  Because I think what is holding me back from considering this surgery is that I really don't want to shave my head."

I actually know a CI recipient who had to shave her head for her surgery over twenty years ago, but fortunately, the procedure has been modernized.   I am happy to report that my hair will stay.  The cone, on the other hand, can go!

To learn more about cochlear implants here is a short animation: