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~ A Cochlear Implant Journey

Adventures With Sound

Tag Archives: cochlear implant

Hairball removal and Pat Metheny’s “First Circle”

22 Tuesday Oct 2013

Posted by Sara in Uncategorized

≈ 4 Comments

Tags

CI moment, cochlear implant, high frequency, music, patience, progress, sound, sounds

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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The Plunge

01 Tuesday Oct 2013

Posted by Sara in Uncategorized

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Tags

cochlear implant, Deaf, hard-of-hearing, lip-reading, sign language

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.  🙂

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