Saturday, May 29, 2010

A Beginning

I've started this blog to tell a story. It's a story that will probably be ongoing through the next several years of my life, and I hope that, by writing, the journey will take on more sense and significance.

Two months ago, on March 14th, I made the decision to get a cochlear implant. I am 20 years old and have been profoundly deaf since birth. (By "deaf" I mean that I have a profound bilateral sensorineural hearing loss, but that's a mouthful. Like many other deaf or hard-of-hearing people, I object to the term "hearing impaired," finding it derogatory.) My decision to be implanted was fraught with complex personal feelings and numerous medical consultations, some of which I hope to go into here. It also involved settling on which cochlear implant manufacturer to use, a choice that at the beginning was far from clear. After weighing between the big three companies of the cochlear implant industry (Advanced Bionics, Med-El, and Cochlear), I decided to go with Advanced Bionics' Harmony device. Again, this was a complex decision influenced by internet research, published studies, side-by-side comparisons, technology platforms, Q&A publications, webchats with company reps, conversations with friends who have been implanted, and other people's blogs. As you can see, it probably deserves its own post.

My surgery is scheduled for June 10, just under two weeks away. That will be the true beginning, to which all of these considerations will be just a prologue. My story, however, does not start here, with this decision, nor there, with the implantation itself. Getting a cochlear implant may be a big change to my life - it may well be a beginning for some things - but it is not the beginning. My entire life, I have been deaf. My disability has not defined who I am, but it has shaped the path I have taken and the decisions I have made. Navigating the hearing world as a deaf person, equipped with the unique skills of lipreading and oral and signed communication, helped along by wonderful friends, parents, sign language interpreters, speech therapists, teachers, and mentors, has been an incomparable journey in itself. It has been full of many highs and lows, many rewards and frustrations. The skills I use are not always reliable, not always enough - and that is what has led me to my decision to get an implant. But acquiring these skills was the real start to my story, and something I hope to write about another time. Being implanted is just the next step, and I see it as a strange and stimulating new frontier into a side of the world that I have never known. The results of my pilgrimage are uncertain, but whatever happens, I know that I can already survive and succeed. At the very least, I am adding another tool to my arsenal.

Let me back up here. What exactly is a cochlear implant? This is a question I've received several times. Upon telling a friend that I plan on being implanted, I get a hesitant smile and the words, "Oh, that's great. Wait, what is it?"

A cochlear implant, for lack of a better description, is essentially a bionic ear. It's a surgically implanted electronic device that translates external noises into electrical signals that stimulate the auditory nerve and, resultantly, cause the brain to receive and interpret impressions of sound. Instead of amplifying sounds like hearing aids do, it bypasses the structures of the auditory canal to insert an electrode array directly in the cochlea (the snail-shaped sensory membrane in the inner ear). In a normal hearing person, the cochlea functions through thousands of tiny, hair-like cells, all of which fire action potentials in response to fluid displaced by physical sound waves. My deafness is sensorineural, meaning that my ear is normal except for the fact that I lack most of these hair cells on the cochlea. Think of a cochlear implant as a computer electrically stimulating my brain into thinking that it can hear. Some say that this is akin to becoming a cyborg.

The external processor has two parts, the behind the ear (BTE) speech processor and the transmitter magnet that conducts the sound signals to the internal device by electromagnetic induction. Mine will look like this:


(image from http://ciborg.lillarosin.com/en/tag/advanced-bionics)

There are many wonderful sites and blogs explaining more about how the device works, many of which have been invaluable to me in my evaluation.

Countdown to becoming a cyborg: 12 days. After the device is implanted, the surgical site heals, the external processor is turned on, and then the real journey begins. Countdown: almost one month.

My experience is especially interesting, because I am getting implanted at a later age. Most cochlear implant recipients are either small children whose parents decide to have them implanted, or older people who have lost their hearing later in life. Since stimulation of the auditory nerve is essential to establishing the neural connections that allow the brain to maximally interpret sound, anyone in my situation is at an inherent disadvantage. Although I have worn hearing aids my entire life, the amount of stimulation they have provided my brain is perhaps minimal. We shall see. Although encouraged by some specialists, my own parents declined to implant me when I was young because they wanted me to make that decision for myself - something for which I will always be grateful. But, in my situation, I find myself oddly alone. There is a general lack of prelingually deaf implantees out there. This is a complex and somewhat political topic, but again - more later.

Before closing, a final note: I struggled with what to title this blog. At first, I composed a list of phrases and puns involving the word "ear," and tried to think of some play on the word "audible." Longing to be clever, I knew I did not want to choose something like "Rachel's Cochlear Implant Blog." This journey is about far more than hearing, far more than cochlear implants - it encompasses fundamental questions about identity, communication, and interaction. (If this does not make sense now, I hope that it will soon.) In the end, the title "Perception Unearthed" seemed to fit. I pray that my cochlear implant journey will teach me far more than just hearing. I pray that it will uncover, or unearth, startling insights, lessons, and perceptions about myself and my world. I constantly dwell on clarity and discovery. And, as a means to attain this, I write.

7 comments:

  1. Hi Rachel

    SPeaking to other implantees, I am told that the CI changes how they feel and changes how they interact with others. I'm looking forward to hearing about your experiences. Good luck on 10 June!

    Tina
    http://funnyoldlife.wordpress.com

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  2. Hi Tina,

    First of all, I LOVE your blog. It's been one of my greatest assets in researching CIs and making my decision, and you always express yourself so perceptively and well. Thank you for sharing your experiences!

    And thanks for the well wishes. I'm hoping this is just what the CI does for me.

    Rachel

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  3. Rachel,
    This is Linda Pfeiffer. I LOVED reading your blog -- besides the fact that you are a fabulous writer and have such a gift for explaining things, we Pfeiffer's just love you much! We will be praying for you on June 10 and will be closely monitoring your blog for post-op comments. Good luck, good luck, good luck!
    P.S. Blogs are wonderful tools for sharing information -- Chris has learned a wealth of good information regarding his cancer issues from blogs. Bless you for sharing

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  4. Rachel, this is Chris Pfeiffer.
    I agree with Linda that you have special talents. It has been wonderful for us to learn more about you.
    I too will be getting an implant this summer.
    Since my cancer surgery I have lost control of my neo-bladder (they took my old one and made a new one). I struggle with the thought that if implant fails, I too will be doomed with a life of incontenance. Even if it works, I will have to change my life in how I do my daily tasks.
    I am very interested in your daily walk and your thoughts as I have simular ones though I do not have the life long experiances you have had, especially dealing with deafness.
    I am aware however, how minority groups (very conscience of being pryed upon by others) being amoung themselves very prejudicai of their own group.
    Love the Lord, Keep your eyes upon Jesus.
    Chris

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  5. Hello, wonderful Pfeiffers -

    So glad you are reading this. Chris, how interesting that some of your feelings relate closely to mine. Where is your blog? I kept up with you on CaringBridge for a while but would love to read it. I'll pray for your own implant this summer.

    I'll keep in touch, here and in other ways. Love you all!

    Rachel

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  6. Rachel, I am amazed by all of the support and prayers that are being sent up for you. Daily I have many, many people inquire about you and state that they and their support groups are praying for your well being. God is Great and he will do great things with you. Love Dad

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  7. Samuel Cohen-TanugiAugust 18, 2010 at 11:05 AM

    Cyborg or not, I still expect you to have lunch with me when the school starts.

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