Monthly Archives: October 2013

Hairball removal and Pat Metheny’s “First Circle”

22 Tuesday Oct 2013

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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.

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

18 Friday Oct 2013

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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?

17 Thursday Oct 2013

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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

15 Tuesday Oct 2013

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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.

A Surprise Bit of Grieving

04 Friday Oct 2013

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Music for me as a hard-of-hearing person was always an interesting experience. What I considered to be good music included electronica and classical piano along with good base.  When all is considered, this would be attributed to my ears’ ability to only hear and isolate singular-type sounds.

When I was a little girl, I used to love the beginning electronic intro just before “Beverly Hills Cop” theme song -“Axel F”.  I wore the tape out in my little pink cassette player rewinding and playing that part over and over again.

Men Without Hats’ “Pop Goes The World” pulled me in with its rhythmic melody. I couldn’t hear the lyrics so I didn’t know that Johnny played the guitar and Jenny played bass. I just knew that it sounded like a easy-flowing, happy river ride in the sun.  My childhood friend Amy and I used to dance around her sun-lit house to the song on full-blast over and over -with the bass throttling the speakers for my benefit.

The first song I learned the lyrics to was Billy Joel’s “We Didn’t Start The Fire”. I was in middle school and I so envied my hearing friends being able to sing along with the lyrics with each other and I wished so badly I could do that.  I wanted to be cool. So I found a tape that had the lyrics in the jacket and spent an entire afternoon studying the lyrics, stopping and rewinding the song over and over again, practicing singing along with it until I got it damn near perfect.

At the next slumber party I attended, someone broke out the cassette-player and I hurriedly put my dog-eared tape in and pressed play.  Even though no one else really knew the song, much less the words, I happily mouthed along with Billy’s rapid-fire diatribe -every single one word.  It was a private victory moment for me.  I felt cool -even if it seemed like no big deal to others. I felt normal.

My high school boyfriend introduced me to different kinds of music but one moment stands out.  I remember he came over one night. He had a little red CRV that he outfitted with a rather extensive stereo system complete with subwoofers that sounded incredible to my limited sense of hearing. He recognized the kind of melody I liked and he brought a song for me to hear -“Sweet Harmony” by The Beloved.  I grinned so hard as we listened to it from beginning to end.  And then I took the tape with me and wore it out listening to it nonstop.

Depeche Mode, Erasure, U2 and Fleetwood Mac joined my high school repertoire of music that I “liked”.  Even the Violent Femmes and Massive Attack.  Later, scores of Buddha Bar and Ibiza albums would join the ranks as they all contained at least one if not a half dozen songs with electronic strains woven around some strain of an identifiable bass that I could easily follow.

I have an interesting parallel relationship with music. I can listen to one song with my hearing aids on and then I can hear that same song in a completely different way with ear buds pushed into my ears.  Some songs I’ve found that I don’t like at all with my hearing aids but others I adore with just ear buds cranked up at full volume.

Listening to music at full volume with earbuds has an embarrassing downside.  One day at work, I was enjoying U2’s “Joshua Tree” album from beginning to end while happily engrossed in a programming project. Halfway through the album, I looked up across my monitor and noticed that Robert -my cube-mate appeared to be mouthing along with the lyrics to the currently playing “Where The Streets Have No Name”.  The timing was impeccable.  Startled, I pulled one bud out, waved at Robert and asked him “Are you listening to U2?”  He smiled and nodded. And then suddenly and in disbelief, I thought…”oh shit.”

“Robert, can you hear my music?” He smiled even wider and nodded. I flushed from head to toe and sheepishly turned my music down.

Fast forward to today, I’m sitting on the porch listening to my list of favorite oldies on YouTube with my good ear when I decided to try to see if I still had any natural hearing left in my left ear to listen to music.

To be cautious with my still-healing ear drum, I turned the music down before carefully nudging the other ear bud in to my ear. As the intro starting to wind up, I slowly pressed the button to increase the volume.  And I heard nothing. I knew this would be a possibility but I guess you can’t really be prepared for that. I don’t regret this decision but I cried.

The Plunge

01 Tuesday Oct 2013

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Last Thursday, I underwent surgery to receive a cochlear implant in my left ear. It’s a little less than a week later and  I’m finally at a place in this dizziness where I can sit and write for a bit. My left ear is healing up nicely but the dizziness is from the inner ear still healing. It’s not too bad, though.

Yes, I did it. whew! Looking back, I’m thinking about how this whole process began.

It all kind of happened quickly once I started the process of consulting with the doctor, checking if insurance would cover it, etc.   I had looked into it very, very briefly years ago and it seemed too iffy back then and I also felt like there was too much controversy surrounding the whole topic.

Around that time a film called”The Sound and the  Fury” had come out. The film followed and highlighted the experiences of two related families -both with one or more deaf members. Both families were exploring the option of a cochlear implant and the film makers interviewed several of the individual family members extensively as they went through the exploration process. A highly charged film, I remember feeling dismayed by it all.  I could not relate. Even though I am not and never have been an active part of the Deaf culture, it bothered me that there was such strong sentiments about the procedure.

Before that, during my freshman year at Purdue, my roommate Amy and I took a American Sign Language course to fulfill our foreign language credit.  Our sign-language class was a group of about 20 students, all eager to learn more about the language and Deaf culture.  What I wasn’t prepared for was how negatively the professor  described the cochlear implant process. He likened the surgery to a chain saw used to disembowel the anatomy of an ear. I asked him why he was presenting the information in such a negative light and his response was that it was an unnatural surgery and that it was damaging to the Deaf community.  Many of my classmates were rapt with attention, taking his word as truth while I was seething with anger.  Needless to say, I got a C in that class.

Over time, life happened and I eventually let the idea of a cochlear implant go.  Also, over time, I felt like I was getting more frustrated with my hearing. I’m in a corporate setting for work these days -meetings, conference calls, multi-person conversations, etc. I come home exhausted and feeling basically wiped out…by Friday evenings, I’m a zombie. While I know that this is normal for a person who is almost profoundly deaf and relies almost completely on lip-reading, facial expressions and conversational cues from others, it still frustrated me that it felt like there was more that I could do.

One day my partner Lisa came home from her job consulting as a compliance officer. Part of her work was to research and line up pertinent information as related to the institutions that the bank did business with. One of them was the parent company of Advanced Bionics -a leader in cochlear implants.  As she further investigated the company, she was blown away by how much they’ve done already and how much they continue to put into their research and development.

She asked me if I had put any more consideration into getting a cochlear implant and if we could look into it. I balked at first, thinking it was super expensive and not very realistic to expect results much beyond what I hear now, which is very little.  She encouraged to me to at least keep an open mind and to explore the option.

At around the same time, I was in touch with another deaf friend that I met in San Francisco, CA. Betsy had one ear implanted almost 5 years ago and she was continuously amazed at how much it improved her life and her relationships in general.  She explained that she continues to learn more sounds over time and that it gets better and better.

So I looked into it. Checked out my insurance coverage to see what the damage would be. Turns out that it would be completely covered as long as my surgeon/doctor was in-network.  Wow. Okay. So I went ahead and made an appointment with an ENT (ear/nose/throat) surgeon -Dr. Neil Sperling here in Manhattan.

We spoke for 15 minutes and he pretty much summed it up for me…I was a candidate for this surgery. I was to go ahead and make an appointment with an audiologist at the New York Eye and Ear Institute.

I remember thinking to myself on the way to my audiogram appointment, “Wow, this is really happening. I’m checking this out! I met with the audiologist, Sabrina – a sprite of a woman who exuded a kind but serious and intelligent manner.  She parked me in a soundproof booth and after the test was over, we discussed what I already knew..I have a severe-to-profound hearing loss.

She asked me if I had any initial questions about the cochlear implant and I replied that I had hundreds of questions but I couldn’t think of any at that moment.  I didn’t even know where to start.  She explained that the next step was to read through the materials provided by the three cochlear implant options -Cochlear, Advanced Bionics and MedEl and then come back to discuss all of the information about the implant technology with her.

Armed with three folders, I pored over all three. Chart after chart promised success rates with various sounds. Drawings illustrated how the implants rested in your head. Pictures showed different people doing different things -a child and an adult both swimming, several business people sitting around a conference table, a couple smiling and snuggling on a couch in front a of a television.

I began to feel like I was being inundated with a lot of superficial information that made the whole process seem a simple matter of making a choice and purchasing a box, bringing it home and assembling according to directions. Too simple.  I was a little freaked.

I made another appointment with the audiologist. Lisa took the morning off and came with me on this visit. Together, we met with the audiologist to go over all of the technical aspects of each brand. It was a very illuminating visit and it set my nerves at ease.  I felt even more excited about it all -especially when we discussed music. It is very likely that I will be able to experience a more comprehensive music understanding with the help of fine-tuned programming of the processor.

Two weeks later, I met again with Dr. Sperling and we set the ball rolling. He reviewed the audiograms from Sabrina’s offices reiterated that he believed I would benefit greatly an implant. He pointed out that my current speech was excellent and that I would do even better after. He also said that he believed I would be knocking at his door less than 3 months later asking for the second ear to be done. I met with his admin staff and we went through the necessary insurance info exchange and set a date. September 26, 2013.

A physical, set of shots and an CT scan later, clearance was given and I was ready.  I was to show up at The New York Eye and Ear Infirmary on 14th street at 9 AM and I couldn’t have a damn cup of coffee -or anything else for that matter 12 hours prior.

The last thing I remember is the surgical team all stepping forward to greet me when I entered the operating room. Ironically, they had to lower their masks so that I could read their lips.  🙂