Becoming a robot on Halloween…?

“Are you a robot?” While volunteering at a school, dozens of first and second graders asked me if I was a robot. They wanted to know all about the wire on the back of my head. “What does it sound like?” “Does it hurt?” “Can you hear me?”

Almost 6 years ago this week my left ear received a cochlear implant and I began the journey of learning and experiencing sound in a whole new way. Today my world of sound is unlike anything I ever expected and continues to surprise me on almost a weekly and sometimes daily basis. I cannot be more thankful for the implant in my left ear and the progress I’ve made since that day.

I hear frogs in the bushes. Even though they drive me mad on some days, I hear different kinds of birds all around me. I hear the elevator beeping. I hear the train door chiming. I can almost understand word for word the automated answering services that greet me when making a phone call to a business line. I can hear Siri announcing what lane I need to be in. I hear leaves crackling on the ground.  If I’m close enough, I hear water dripping in the bathtub. I hear feet shuffling behind me.  I can now hear a smoke alarm beeping – I could never hear them before as they’re high-pitched and I have a high-frequency hearing-loss.

The most beautiful sounds are those found layered into the beats within songs. Music now feels deeper and so more expansive. Multidimensional in a way and I can’t get enough. I hear my best friend’s laugh -she has a very sweet, little girl laugh. Before I would just see her face go rigid but now I hear it, too. I hear my mom’s voice so clearly now. Rain pouring down onto the roof sounds incredible.

My speech has improved. My “deaf accent” has lightened a little as I can hear my own voice more, which helps me to annunciate the quieter, higher parts of syllables within words. I feel more confident in my ability to speak louder. And I do. Often.

What I struggle with most is “localization”. Because I’m not bilateral and “in-stereo”, I can’t tell where the sound is coming from. I mistake a fire engine in the distance for a person yelling near me.  Thinking I heard a knock at my door, I answer only to find no one there.

Once when planning to commute downtown with a friend, we planned to meet in the last car of a specific subway train. When that train arrived, she leaned out of the subway car and called to me repeatedly.  I thought I heard her voice coming from the opposite direction so I started walking the other way.  The doors closed and the train pulled away. As it passed me by, I saw her standing on the other side of the door waving at me while everyone behind her stared at us -confused.

In exercise classes, I’m that lady that goes right while everyone else goes left.  I even missed a plane while sitting right there at the terminal because I didn’t hear the announcement that my group was to board.

I still rely heavily on lip-reading to understand what someone is saying. So if I don’t see the person’s mouth, chances are I’m comprehending only a fraction of what they’re saying and I’m filling in the blanks myself – tricky and sometimes dangerous game. I still teeter through conference calls and conference rooms of people speaking so I rely on my coworkers to fill in the blanks or sometimes a web-based transcription service.

All of things considered though, hearing from the cochlear implant  in my left ear far exceeds the hearing I have in my right from a hearing aid. This past Monday I went to an audiologist for a hearing test to gauge whether or not I was a candidate for an implant in my right ear. The results were staggering. Word comprehension was almost 20% with the cochlear implant device and only 3% with the hearing aid. Upon the conclusion of the test, the audiologist opened the sound-proof booth, looked at me and nodded.

So, next Thursday on Halloween I’m scheduled to go in and have my right ear implanted. And the journey begins again.

 

 

 

 

A whole twelve percent!

It’s been a long while since I’ve posted here and so much has happened. I keep a mental list of things that I want to write about because it’s all so exciting to me yet I’ve just not taken the time to sit down and put it on paper.

Twelve percent.

Before I decided to take the leap and undergo the procedure to receive a cochlear implant, my audiologist tested my hearing comprehension level with my hearing aids. I went into a soundproof booth and sat in a chair facing a thick glass window that looks into another room where the audiologist sat.

The first test she performed involved tones. I would take one hearing aid out and she would run through a series of beeps and tones to detect how much I could hear. Upon hearing a tone, I would raise my hand. I heard low tones and medium tones up to a certain point but the high tones would peter out almost immediately, which is not surprising as we already knew that I have a high-frequency loss in both ears.

The second test was centered around words and sentences. Again, I would take out one hearing aid and then switch as the audiologist shielded her mouth and said short, one or two syllable words to me. I would try to repeat them back to her and failed miserably with both ears. This was also not surprising because the aforementioned high-frequency loss made it impossible for me to pick up the beginnings and ends of words. Sounds like “ssss”, “tttt”, “shhhhh”, “ppp” or “nnnddd” were loss on me. All I could hear is the middle part of the word and that was likely a vowel which sounded like a tone with no beginning or end. A hamburger without the bun to complete it.

If a word has more than one or two syllable, I would try hard to think of what the word could possibly be but it was luck of the draw at that point. And I had very little luck in the sound-proof booth. In fact, none at all because I scored a big fat zero on that test.

Fast forward to six months later. After six months of slowly adapting to the strange new way of hearing that a cochlear implant brings – the odd trills, the quirky atmospheric hums and clangs, the sudden jolts and the soft, stealthy pings, I scored a whopping twelve percent. This number will go up as I continue to practice with the aid of apps and audio recordings that sound out words and I listen carefully. “Run”, “nun”, “pun”, “top”, “pop”, “mop”, “ran”, “tan”, “land”, “sand”….

For a person who has lived a lifetime of relying upon lip-reading to help make sense of those vowel sounds -to bring clarity to a whole word, this is enormous.

What’s fascinating is that I’m now at the point where I don’t hear as well without the implant’s external device on and activated. I’ve come to rely on it for a more comprehensive understanding of sounds around me. I’m suddenly hearing the rice cooker we’ve had for more than five years beep when it’s done. I hear the screen door creaking when it opens. The cat’s meow is a scratchy squeak.

And the best part is the birds. The birds are driving me absolutely nuts! And I love it!

“I hear a symphony, a tender melody, pulling me closer”

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               “Ah things ain’t what they used to be, no no

               Where did all the blue skies go?

               Poison is the wind that blows

               from the north and south and east

               Woo mercy, mercy me, mercy farther

               Ah things ain’t what they used to be, no no”

                                             -Marvin Gaye

As a person living with a severe to profound hearing loss from birth, I experienced something for the first time in my life this past week and I’m still smiling about it. I went to the Broadway show and I understood every single word of it.

In my life thus far, I’ve had the privilege to attend dozens of productions -musicals, plays, concerts, shorts…and while I’ve enjoyed them all so much, I’ve always struggled to understand what was being said, what the context was, what the songs were expressing.

“Miss Saigon”, “Cats”, “Phantom of the Opera”, “Rent”, “Chicago, “Kiss of the Spider Woman”, “Mama Mia!”, The Vagina Monologues

Tina Turner, U2, Violent Femmes, The Temptations, Sarah McLachlan, Peter Gabriel, Depeche Mode, Jill Scott, Diane Reeves, Esperanza Spalding, Patti Smith, Buena Vista Social Club,  East Village Opera Company, Gregory Porter, Taj Mahal

Attending these events brought me great joy and I’ve never shied away from attending in spite of the fact that I was missing out on a major component.  Instead, I would focus on watching movement, observing faces, interpret music  in my own way -even so far as to imagine what was being said as empathetically as I could. In a sense, I would create my own version of the production in my head with the information available to me through my four and a half senses.

Plays could be researched beforehand to help provide context and those who attended with me would do their best to fill me in as the production progressed.  Some larger venues would have enormous monitors throughout, displaying a performer’s face so that I could catch snatches here and there.  In many cases, I would even recognize favorite songs -those I would know the lyrics by heart and could “hear” from memory. U2’s “With or Without You”, Tina Turner’s “Private Dancer”, The Temptations’  “Just My Imagination”

Watching the expressions on other concert goers’ faces would fill me with happiness and  sometimes if I was lucky I could read their lips as they sang along -my own private interpreters.  Elaborate costumes, gorgeous choreography and the energy of the crowd provided me with an incredible experience in itself. A different kind, yes, and without words but still so beautiful in its unique way.

               “You’ve given me a true love,

               and every day I thank you love

               For a feeling that’s so new

               So inviting, so exciting

               Whenever you’re near

               I hear a symphony

               A tender melody

               Pulling me closer

               Closer to your arms”

                              -Diana Ross

This past Tuesday evening, all of that changed.  My partner and I attended the incredible Mo’town The Musical -a production we’ve wanted to see for quite some time as we know one of the lead performers but because I knew I wouldn’t be able to understand most of it, my partner did not want to attend as she felt this was unfair to me.

And then we found out that this particular performance was open-captioned. So we jumped at the opportunity.

Thanks to an amazing organization called the Theatre Development Fund, Mo’town and scores of other theatre  productions are made open captioned for a selected number of performances.  A text display stationed at the side of the stage provides a simultaneous transcription of dialogue and lyrics during a live performance. Because I don’t know sign language, this was the perfect solution for me -along with thousands of others who are hard-of-hearing.

When we reached our seats and took our coats off, moments before the lights dimmed, I scanned the crowd and noticed dozens of people wearing hearing-aids and cochlear implant devices all around me.  Suddenly, as the theatre darkened, bright orange words flashed on a rectangular screen to the left of the stage as a song -one of 59 began, accompanied by a booming 18-piece orchestra.  “You’re Nobody ’til Somebody Loves You”, “Dancing in the Streets”, “War”, “My Guy”, “Ain’t No Mountain High Enough”…and so many more.  And I could understand every single word the performers were singing and saying.

Overwhelmingly happy, I cried.

               “You and I must make a pact

               We must bring salvation back,

               Where there is love, I’ll be there.

               I’ll reach out my hand to you

               I’ll have faith in all you do.

               Just call my name and I’ll be there.

               I’ll be there to comfort you,

               Build my world of dreams around you,

               I’m so glad that I found you.”

                              –Berry Gordy

As the story moved along and the action shifted about on the stage, in synchronous movement my head along with dozens of others around me swung back and forth from the screen back to the stage, reading quickly and then watching the performers.  Several were clapping along, many were smiling and all of us could understand.  Being able to read the words made the musical experience so much richer.  This time -for me costumes and stage decorations were icing on the cake and the choreography was so much more fun – simply because I was able to “hear” the words to the songs to which they were dancing.

Since first introducing this service to Broadway in 1997, there have been over 46,000 admissions to TDF open captioned performances. More information on this amazing organization can be found here.

Looking at each sound within the entire mosaic.

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It’s been a while since I’ve last written and much has unfolded in my auditory world. As part of training my ear and brain to learn and recognize new sounds, I am to go to the audiologist every four weeks and receive an updated set of four incremental programs.

Each new program opens up the range of sound available to me a little at a time and this is so that my brain is not overwhelmed and therefore can adequately and somewhat calmly absorb this new world of pitch/frequency/vibration. Every seven or eight days, I increment up to the next program and I spend the week navigating that program.

To date, I’ve worked my way to the third increment within the third set of programs and I can see and feel a major difference from the very first day of initial activation -I must admit I feel like an android when I use this word but it’s industry standard and heck, there IS a wire peeking out from my hair so I might as well embrace the term whole-heartedly.

I’m now hearing more parts of sound. Because I was born with a high-frequency loss, my brain has no idea what high frequency sounds look like and therefore, this has been the most daunting part of the process. Every program has given me more access to high-frequency sounds and while it’s been amazing in its own capacity, I’ve felt so overwhelmed with the myriad of high notes out there.

What is overwhelming about this is that the sound fills my head.  I actually feel the sound. The experience of “hearing” has taken on a new dimension to me.  My eyes feel the vibrations. The space behind my forehead feels the sound and that rolls back into the inside of my head.

Silverware clattering into the drawer organizer, water turned on full blast into the kitchen sink, notebooks slapping the conference table at the beginning of a meeting, sirens of emergency vehicles a few blocks away, piles and piles of leaves rustling, clinking of glassware, brakes grinding as the subway comes to a standstill, the alarm on the exit gate that everyone uses when rushing to get out of the subway station, the ironing board screeching as it is opened and closed, even the tinkling of my own pee.  I feel the sound of my own pee inside of my eyeballs and my head.

As much as I’m enthralled with all of these brand-new mini ear experiences, at times it becomes too much.  I told Lisa, my partner that I don’t know how hearing people do it.  How do you filter out or water down the power of all of that….noise?!  On the days that I increment up to the next program, I go to bed exhausted that night. I’m crabby, irritable and I basically feel assaulted and worn out.

And then I wake up the next day, slap the magnet on along with ear piece, turn it on and it feels a little better.  Not as overwhelming. Not too unlike beginning a new work-out course and making through to your third class without wanting to chuck your water bottle at the obnoxiously perky & energetic instructor.

What I’m learning, though, through this process is that it feels more digestible to look more closely and isolate the unique sounds I’m picking up.  When I focus on the specific sounds and have a conversation with myself about what they are, I feel as though my brain catalogues the sound more rapidly.  Often on the subway ride to work in the mornings because I’m fresh and rested, I’ll take the opportunity to turn the hearing aid off in my right ear and I’ll ride with my eyes closed, listening hard. The sound of the bell tone as the train doors open. The automated voices listing the available transfers. The grind of the brakes.  The pull of the tracks as we careen around a bend.  I recognize the familiar sounds of a typical train ride and interestingly enough, I feel safe in this experience. It’s consistent.  My brain knows what to do with this particular mosaic of sounds.

It’s within the context of consistency that I’m able to then experience unusual sounds and to pick them out. On a train ride, I heard a sharp crack and turned my head to see a dropped smart phone had landed on the floor. I smiled fiendishly as I recognized that my brain was able to isolate that sound until I caught the look of dismay aimed my way by the owner of the phone. I didn’t feel that it would be fruitful to pick my way over to her and attempt to explain that I was ecstatic at hearing her phone hit the hard surface and why. She was clearly having a Monday morning.

Walking to work, I grinned happily at some poor unsuspecting fellow who sneezed right next to the magnet microphone attached to my head and I automatically replied, “Bless you!”  I can only imagine what he thought of the overzealous smile right in his face as he turned to me.  The light changed to “Walk” and I moseyed off.  I heard him sneeze!

I had an ethereal experience in the forest a few weekends ago when my friend and I went on a day hike at Storm King Mountain.  Hiking over rocks, streams and hills, I became so enamored with the isolated sound of leaves rustling past my boots that I found myself perched on a rock, staring down at all of the fallen foliage around me.  Every single step I took made my head spin. Almost stimming like a person with autism, I started shuffling slowly -experimenting with my heady ear hallucinations. When I looked up, I found that my fellow hikers were piling up behind me, staring at me oddly and all I could do was shrug and take off again, maintaining focus on pace. Which brings me to a conclusive point.

As I move onto new programs and wider ranges of sound become available, maintaining focus and continuing dialogue with my brain will be what helps me to grow comfortable with these sounds -eventually learning to filter them appropriately into a larger picture -or a mosaic.

Meat-lovers & dog kicking

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Last week while walking back to work from lunch with a colleague, I kicked a small dog. Hard. The owner shot daggers at me and of course, I was horrified. I apologized profusely but I was still pierced by the withering glare of the pup’s daddy.

It happened while we were walking along a typical New York sidewalk up 8th Avenue in Chelsea -not too wide and relatively crowded with other hurried pedestrians. I was intently reading Sarah’s lips and trying to keep up with our conversation concerning a business project -all the while navigating what I couldn’t see in front of me because my eyes and head were turned toward her face. Sideswiped someone’s grocery bag but not so much that they dropped it. Near-missed a wheel-chair ramp railing exiting a building -only mildly dinging my right hip against the metal pole. Almost stepped off a curb into direct traffic. And then on complete accident, I kicked the pooch that had magically landed in front of me just outside of my lip-reading periphery.

Let’s talk about lip reading. More importantly, the experience of relying on lip-reading. In my 38 years of living as a hard-of-hearing person, one comment I receive the most is how “amazing it is that I can read lips so well” and it’s usually followed by garden-variety comment such as “you could be a spy” or “what am I saying?” and that sometimes leads to the obligatory game of repeating back silently mouthed phrases.

“What’s my name?”

“Can you read my lips?”

“What am I saying?”

“This…is…so….cool.”

After the fun little game is completed, I debate whether it wouldn’t be inappropriate to hand over a t-shirt that says “I’m certified.”

Another droll routine occasionally occurs when I meet any random stranger and we have a conversation. Often times, at some point in the initial conversation I may have to explain that I am hard-of-hearing and that I need for that person to stop playing with their moustache or to remove his or her hand away from his/her mouth so that I can have full view of the two lips that are forming the words.

This is where the circus act comes in. When said person fully comprehends that I am indeed reading their lips, they do the worst possible thing. They start to articulate. And by articulate, I mean go into extreme slo-mo with wild, almost unnatural gelationous mouth movements. I suddenly think of Jim Carrey performing some obnoxious scene and it becomes very difficult for me to maintain a straight face -much less understand what is being said. Some will even offer some strangled form of hand-gestures that are supposed to pass for sign-language. And I don’t even know sign-language.

I gently explain that I don’t need for them to…ahem…articulate. After all, I was “reading” just fine moments ago. All that was needed was for that particular visual obstacle -such as a hand or a piece of masticated debris to be removed. Yet the eyes go wide and the extraordinary articulation continues. And the hand gestures don’t quite go….away.  It’s in these particular cases that I want to hand the winning person a t-shirt that reads, “I”m certifiable.”

Lip-reading a large group can be likened to watching a hyper game of table tennis -with more than two players and more than two sides of a table. One of the challenges of effective group lip-reading is to find the person is talking among the bunch. This can be quite taxing in a larger group -especially when sitting around a square or rectangular table. So the trick is to settle your sights on one or two people who appear to be doing most of the talking and in the meantime fill in the blanks yourself so that you can remain an  active part of the conversation -or at least have your contributions maintain some relevance to the current subject matter.

That trick, though, has a few caveats.  At the very same lunch mentioned above, another classic lip-reading moment occurred. As it was a Friday afternoon that we went for our meal, we were all talking about our plans for the upcoming weekend. I asked a co-worker directly across from me if she was planning to go to visit her boyfriend in Pennsylvania.  She replied yes and the conversation eventually led to the pro’s and con’s of living outside of the city -meaning NYC.  More space, less people to deal with, less noise, cheaper housing….and so on.

I explained that we have two dogs and that we were lucky because we have a backyard, which is unheard of in Manhattan but we did not have a car. She mentioned that her boyfriend had what I thought she said a dog. I asked her what kind and she replied, “a Mercedes”.  My brain automatically started to try to picture what a “mercedes dog” looked like. Troubled, I asked her how big it was.

She looked at me and said, “um…not that big”.  I told her I had never heard of a mercedes dog and what did it look like? Her eyes went wide and she looked at me for a brief ten seconds. Suddenly, it clicked. She smiled and said, “He has a CAR.” Oh!  A car.  (shit.) We both snickered for a few moments and the conversation went on.

“Car”, “dog”. That makes sense. One syllable words with vowels that look the same in a darkened Mexican restaurant where the margaritas are flowing.

Moments later, I swung my eyes to another co-worker -employing the same trick of watching a person who is a lively participant to get a sense of where the general conversation was at.  Someone asked her who she was going to an event with and she coyly replied, “My lover” but because I was not used to that type of reference and I knew that she had a boyfriend with whom she lived, I thought she said, “Meat lover”. I smiled at her and told her that I thought that was cute that she called her boyfriend “Meat lover”.

She and I gazed at each other silently. I ran through the possibilities in my head… “Meat Lover. Why she she call him ‘meat-lover’? What does that mean? Is it a pervy reference of some sort? Is it really that he just loves his meat? What kind of meat, exactly? Or wait, is he an extreme vegetarian?” My imagination went straight down and through the rabbit hole. Her eyebrows went up, she smiled wanly, pointed to herself and said, “My lover.” We both started laughing so hard because oddly enough, even though it was not what she originally said, “meat lover” still made sense.

Lip-reading has been a life-saver for me. I’m able to participate in a mainstream lifestyle with very little additional aid and for that, I’m grateful. But make no mistake,  lip-reading absolutely has its hazards. Meter maid poles, fire hydrants, uneven sidewalks, car bumpers, scaffolding towers, conversational disconnects that lead to wild goose chases, misinformation and the maiming of small animals.

A skateboarder’s herbacious high and a CI moment

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It’s week three of being activated and so far, it’s been …interesting. I want to tell you that I love it. I want to say that it’s been one auditory revelation after another and that I’m jumping up and down because the quality of my hearing has skyrocketed.

In all fairness, I can’t do that. This whole experience is not any of those things. It’s not firework explosions and crystal clarity that I’ve never experienced before. It’s not me picking up the telephone and having conversations with college girlfriends or family without a translator nestled somewhere in between. It’s not me putting on music and smiling along with the lyrics that I’ve never understood before.

No. It’s none of that. What it is…is frustrating. It’s downright grueling work. And frankly, if I’m to be very open and honest about it, I don’t like it right now. I don’t regret it but  I’m struggling with it. I’m having conversations with myself about how I knew this would be hard work. That it’s not what I expected but if I’m to fully benefit from what this whole cochlear implant procedure and process truly is, then I will need to surrender over and over again. And I don’t like it. Patience is not my virtue.

For the last two weeks, I’ve been exhausted. I fall into bed around 8:30 every night with a steady tone ringing in my implanted ear. The tone begins around 4 or 5pm every night and goes away by the time I wake up. The tone is from the nerves being overstimulated. While I haven’t experienced headaches, I do feel a deep tiredness like my brain was doing calculations all day long with an accountant while trying to also write a thesis paper for physics -two subjects I know nothing about. That kind of tired.

I can tell you what all of this is, though. Right now it’s dozens and dozens of little CI moments. Some strung together like homemade Christmas popcorn garlands, one after another. Others singular and quite momentous in themselves.

From the day of activation up until now and for the next few months, I’m experiencing what I can best describe as tap dancing on my auditory nerves. I don’t feel like I’m hearing sounds. I feel like there are little tiny people inside my head with tiny little hammers and they’re tapping away at my under-exposed nerves. Tap, tap, tap, tinkle. Tappity-tappity tap…ping!

All of this tapping serves a purpose, though. As weird as I feel, I can already see the progress of these taps, tinkles and pings. The under-exposed nerves have never heard sound before. Ever. Because of that, the programs that I’m working with are designed to slowly increment the range of sounds that are allowed in, giving the infantilized nerves time to wake up, get acquainted and become active participants in receiving and processing sound.

I’ve already worked through a set of four programs -each active for 3 days. Now I’m working my way through a second set of four programs given to me by my audiologist. These programs last for a week each. Today I’m on the second. And I feel high. Not uncomfortably so but I do feel like I ingested something and everything is a wee bit illuminated.

I wear a BTE (behind the ear) hearing aid in my right ear that affords me very little  residual hearing. Right now that residual hearing feels like it’s been touched with sprinkles of heightened color and glitter. I can read lips so much better. Sounds feel prettier. I’m experiencing less difficulty understanding conversations in front of me, especially when I sit back and allow myself to relax.

Last week I was out walking the dogs and enjoying some gorgeous Fall weather when suddenly I heard/felt a rumbling sound. The dogs jumped and I turned around to see a young man on a skateboard roll up to us. He jumped off and with a broad, lopsided smile asked if he could pet the dogs. I happily obliged and as he was kneeling over rubbing the their heads, we chatted about his own experiences with dogs. He was talking a mile a minute and I stood there, listening, smiling and nodding. I was smiling not at what he had to say but at the realization that I could understand almost every thing he was saying…and this was a stranger.

He chattered at me for a good five minutes, growing more and more animated and my grin grew wider and wider -gleeful that I could take all of this in! Suddenly, he stopped rambling and said, ‘Okay! Thanks! See you around!” and he was off, leaving behind a faint whiff of the cannabis. It hit me that he was having his own little special moment while I was having mine.

Two days later, I incremented to another program and on that very day, I attended a conference/panel discussion. Normally such events would be a battle for me. Missing out on approximately 50% of what is actually said, I attempt fill in the blanks to make sense of the subject matter. This time, I didn’t have to. My colleague and I sat up front where we had a clear view of all of the panel participants. I was able to lean back, read lips and with the help of an excellent sound system, I heard almost all of it. I was overjoyed! I found myself truly absorbing the information, understanding what was being discussed and I even felt confident enough to raise my hand and offer my own input -over and over again. This was an enormous CI moment for me.

Granted, the aforementioned event was within a controlled environment, with each person taking turns to speak and to speak clearly so that everyone could hear. Even so, this was an event of over 50 participants. That’s huge for me. I smiled for three days -even as I slept hard for three days as well because it was still indeed exhausting work.

I can now hear the swishing sound that my belt makes when I pull it through my jeans loops. I can hear the dog’s nails tapping on the hardwood floors as he trots to his food bowl. Can’t hear the cat yet but definitely the dog.  I can hear the clink of the spatula hitting the pan when making dinner. I can hear myself pee. I can hear that woman in high heels clicking across our open-air office’s cement floors.  I can hear my boss walking up behind my desk. The radiator as it gurgles to life.

The best is the yellow Fall leaves in our back yard. I can hear the leaves crunching under my shoes as I wade through them. It is absolutely moments like these that I’m hanging on to when I feel overloaded and discouraged.

Hairball removal and Pat Metheny’s “First Circle”

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It’s day six of being ‘activated’ and I must admit it’s been very interesting.  I’ll also admit that it’s been an exercise in extreme patience.  During dinner last night, I told Lisa that while I absolutely do not regret this, I can see how some people would go a little nuts in the beginning. I can see how failed expectations can really falter determination and even discourage actively pursuing progression.  Two things are at play here.  Expectations and surrendering.

Because I have no idea what it is to hear high-frequency sounds, I also have no idea of what kind of expectations are reasonable.  A person cannot help but to have expectations. Planning that trip to a place you’ve never been to before during a time that you really, really need a trip, your mind cannot help but to visualize what it’s going to look like. You imagine how it will feel to stroll slowly along cobblestoned streets with colorful flowers, quaint outdoor cafes and wafts of laughter floating by. (Yes, I said “wafts”.) Or that oceanside spot -your toes dug in sand, your hair damp from that incredible swim you just took and a cold, refreshing beverage in your hand.  You keep imagining over and over again what it will look like and you can’t help but to smile in expectation. Ahh…..

And then you get there. Boom.  One of the kids gets sick, your suitcase got lost and the bed-and-breakfast room that you booked smells like mold.  To make matters worse, you’ve got the worst sinus headache known to humankind.  And all you want to do is sleep…because you’re exhausted. You keep thinking in the back of your head, “This was not supposed to happen!”

In this case, while I don’t have to sniff a moldy guest room and I don’t have sick kids to tend to and I don’t have a suitcase I have to track down in a foreign country, I do have ringing in that ear, I’m totally exhausted and I do feel downtrodden, like “What!? This is not the what I thought it would be.”

At the end of every day so far, I’ve had a mild headache, I feel like a sleepwalking, cranky, crabby zombie and my left ear has a strange ringing/rushing sound in it -even after I take the processor off. It was so loud one night that I began to wonder if what I was “hearing” with the processor on was a figment of my imagination!  Albeit, when I woke up the next morning, the sound had thankfully vanished.

Having described all of the difficult parts, and they have been difficult, it’s even more important that I look at the other side of the coin.  I had what some call a “CI” moment yesterday on the bathroom floor while removing a matted hairball from our 18 year old cat, Molly.  A CI moment is a moment when a cochlear implant recipient experiences hearing in a brand new way and it’s extraordinarily exciting. Often times it’s a small moment but so many of those moments make up a mosaic that becomes your new hearing experience -the one that you are working so hard for.

So, back to the bathroom floor, scissors in hand and a very angry old toothless cat, I was wearing only the processor -I had left my hearing aid out so that I could let my left ear do some work.  I had my computer open in the dining room and my YouTube list of favorites was playing. Carefully cutting through this particularly large hairball, I kept hearing -or rather feeling this beat in my head. I shook my head and looked at the cat. She glared back at me.  It was not my imagination -the beat continued. Leaning forward, I snipped another tuft of fur and as she bit my hand with her gums, I thought to myself, “Am I hearing something or am I nuts?”

Moments later after freeing Molly’s offending hairball, I sat down in front of my computer and suddenly realized that the beat bouncing in my head were the notes to Pat Metheny’s “First Circle”.  “First Circle” contains a myriad of high notes produced by an assortment of instruments and human voices.  To the natural hearing ear, it’s a melodic exploration of sound but to my ear, half of the song was inaccessible -that is, until yesterday on the bathroom floor with my enraged kitty.  I could suddenly hear the high-frequency beats and when I realized what it was, it made sense.  It was a definite “CI” moment.

I mentioned surrender.  This is the difficult part.  I’ve noticed that when I “surrender” my expectation of sound, I hear more.  When I stop listening for something, I hear more.  When I was concentrating on avoiding the cat’s attempts to bite me while not scissoring her on accident, that’s when I could hear the beat.  While I’m sitting here typing this, I can hear the  beats.  It’s when I strain and listen for what I believe it to sound like is when the song fades away.  I’m working on surrendering to new sounds and my patience is being worked. Then again, patience is a muscle that must exercised   regularly in order to grow.

When you look back on that trip you took where you had so many expectations that failed to materialize and you felt so left down, you may also remember some super sweet moments that made the trip incredible.  You may have held your sick kid on your lap while watching a gorgeous sunset from the porch swing at the “moldy” guest house. You may have taken a nap three days in a row to help your sinus headache go away, only to find out that you really just needed some sleep -peaceful, uninterrupted sleep. And you may remember laughing so hard with your family that your face hurt.

That’s what I’m working on. Letting the CI moments come so that I can have my own mosaic of hearing experiences.  But I do suspect that the cat will be hairless before this all over.

“Hand me the doggy bag…I can’t hear the music.”

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A few nights ago, before activation, Lisa and I went out for dinner at a neighborhood restaurant. I had my leftovers packed up to go in a doggy bag -a styrofoam container in a plastic bag.  Strolling down the street, we noticed that there was live music happening at Rooster’s, another neighborhood establishment. We decided to go in for a nightcap and to enjoy some tunes.

The music consisted of a fantastic DJ spinning some beats accompanied by a violinist playing nearby.  The place was jammed with patrons chatting, laughing and some even dancing. Polished cement floors and enormous windows contributed to the bouncing cacophony of sound that was swirling around my lone hearing-aid and it was becoming too much.  I stood still and tried to relax, focusing on the dancers in front of me.

Lisa tapped my shoulder, motioning for me to take the glass of wine and the doggy bag that were in her outstretched hands. I reached over and took both items and suddenly the beat of the music made sense to me.  Looking over at the violinist, I happily watched him sway as my right foot tapped in time to the vibrations reverberating through the styrofoam container in my left hand.

With the aid the styrofoam clenched in my fingers, my brain was able to isolate some of the sounds and I could see where the beats were coming from.  Fast forward to today, that’s what I feel is happening with my newly “activated” left ear. I’m experiencing an odd assortment of sounds -mostly a dull roar, almost like a continuous tone of white noise with the sporadic injunction of a tweet or ping.

When I leave my hearing-aid out, it’s hard for me to map where the errant tweet or ping comes from and I don’t even necessarily hear anything more than that but when I put my hearing-aid back in my right ear, I suddenly hear more in my left. I know this is because my brain is mapping sounds with the help of my right ear -which I’m now referring to as my “styrofoam doggy bag”.

I can definitely tell the difference today and it’s only been 24 hours. My hearing is heightened.  Almost like when you have a decade-old prescription for eye glasses and you’re used to it. You go in and grudgingly get a new prescription and, wow! things are so much more crisp! You can read those signs! Huh!

It’s not all clear yet and there’s clearly a lot more mapping to do but I can see where this is going.  Today I tap-danced in the office bathroom after flushing the toilet because I could hear the tinkling of the tile under my shoes. And I liked it!

Waiting for….Sylvester?

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This morning I went to the audiologist and got “activated” for the first time. Simply put, it was surreal. I’ve personally never done acid before but I feel like I’m on some variation of an auditory acid trip. The best way I can describe the feeling is….it’s exactly that -a feeling!  I don’t feel like I’m actually hearing sounds but rather, I’m feeling them in my head. Like seismic waves reverberating through my skull.

Because I was born hard-of-hearing -more specifically, with a high-frequency loss, my brain has never developed a comprehension for those sounds. The nerves are there but they were never used.  A classic piano has 88 keys. Thus far, I’ve had access to a little over half, and all of them on the left side. The keys on the right side are there but the strings are not attached.  In theory, the cochlear implant will “attach the strings to these keys” but I need to learn to hear and recognize these notes.  This is the mapping process.

A major part of this process will include introducing these new sounds to my brain, little by little. The audiologist programmed the processor to increment a little more every three days. This will go on for a few months as I become more comfortable with new sounds. It’s almost like when you buy a new car, you suddenly start noticing that car everywhere. After a while, the newness wears off and you don’t notice as much anymore. That’s what will happen as my brain absorbs understanding of these amazing new vibrations.

For the moment, my brain and nerves are engaged in a fast and furious Broadway show of high-frequency sounds and the starring role appears to be my childhood’s beloved yellow bird, Tweety. Tweety came over and set up his dressing room inside my head. Every time I hear a sound, he screams for me to take notice. It’s wild! In addition, when Tweety screams, he does a quick little dance that makes my eyes vibrate.

I walked to work after leaving the audiologist’s office and I tried to take in as much as I could without working too hard at it. Just as I started to relax, I walked past a man who had just thrown his head back in laughter…my eyes nearly tap-danced right out of my head.

I flushed the toilet a few moments ago and was fascinated by how many sounds it makes! That water was positively tinkling in my ear!

Tweety and I are just waiting for Sylvester to join in the fun….!

Re-learning my ABC’s

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A few weeks ago, my partner and I were enjoying a meal outside in our backyard.  As we were chatting, I heard a sound and paused for a moment. “Did I just hear a rooster crowing?” She smiled and replied, “No, that was a man laughing.”

This Thursday will be three weeks since surgery.  This Thursday is when I go in to the audiologist’s office and get the additional parts -the external parts.  I’m super, super excited and I’m a little nervous at the same time.

What I’m excited about is what I will be able to hear. My partner and loved ones’ voices.  Different layers of music that I’ve never heard before -not just the bass but the melody and the lyrics; birds singing and water rushing; leaves crackling and Ezra’s full whine -I only hear the middle part, the deepest part. The swish/cracking sound of a golf club hitting a ball. The subway announcements informing me that a train will run express so I can get off and not miss my stop. Rain falling. Someone calling my name from across the street or the next room. My partner whispering to me during a show. The clicking sound that a cat’s claws make while walking across wood floor. The doorbell.  A full orchestra -violins, horns, percussion, clarinets, sax, flute, piano. The beep of the coffeemaker when it’s done so I know it’s actually time to get out of bed in the morning because a cup will be ready within seconds and not minutes.

What I’m nervous about is my expectations. I’m trying not to have any so that I can keep an open mind and enjoy the process no matter what. Many people have asked me if I’m excited to hear everything and I understand that the assumption is that I will be able to just “hear” like a person with normal hearing does. And this is where I step in and explain -and remind myself to not have this same idealistic expectation. It won’t be like putting a new lightbulb in and flipping the switch.

The process will include me training my brain to map sounds that it’s never heard before.  That will be the challenge. To listen to audiobooks, podcasts, various types of music…over and over again. There are several iPad apps that I can download and listen to in order to teach my brain to map sounds. It will almost be like me learning the fundamentals -my ABC’s all over again because one of my five senses missed out the first time around.

One of the challenges I will encounter is to learn to let go of lip-reading and to actually rely on the implanted ear to “hear”.  Lip-reading includes face-reading. It includes a million possible combinations of visual cues. It includes a million possible assumptions based upon context, atmosphere, association and even awareness of current events.

If a person that I don’t know walks up to me and starts talking, my brain scrambles to decipher the possibilities.  Small talk includes “how are you?”, “where are you from?”, “how can I help you?”, “the weather is nice today”, “what time is it?”, “what is your name?”, “how do you get from point A to point B?” and so on.  I can “read” those items with relative ease.

At work, I can expect to read a certain volume of terms within conversations, “timeline”, “JavaScript”, “variable”, “deliverables”, “project”, “HTML”, “video”, “client”, “art”….  I know to expect that sort of conversation and my brain is ready for that.

Same at home, “Hi honey!”, “What shall we make for dinner?”, “Yes, the cat already ate”, “Can you hand me that, please?” , “Ready to go?”, “Do you have the keys?”, etc.

It’s when conversations go beyond small talk that I work harder (and I make more mistakes).  Classroom discussions, dinner parties, conference rooms with more than 5 people….it’s like watching a tennis game with a dozen players and no rules. It’s exhausting but I refuse to disengage. I rely on the patience of those around me to fill me in on what I miss and 95% of the time, people come through.

I try to read the news, blogs, social media and other sources of current affairs so that I can keep abreast of potential topics.  I do this as an intelligent person interested in the world I live in but it also literally helps with cognizant lip-reading.  Just a few months ago, I was on the train and dipping into a conversation that was happening half-way across the subway car. I had read a quick summary of the daily news from New York Times and because of that, I easily recognized that the two people I was “eavesdropping” on were discussing the development that Amazon’s Bezos had purchased the Washington Post.  I “read” the conversation for a good three minutes before disembarking the train. A few weeks ago, I read another conversation on the train between three people who were discussing the government shut down and what did it mean for all of us.

I suppose that this sort of social/political/current events awareness would help a hearing person navigate conversations as well so I’m certain I will continue to employ this strategy. I imagine it will be a fine balance.  Learning to sit back, let go of lip-reading and having the confidence to let my ear naturally work on its own is what I will need to practice.  Should be interesting.