CI At Six Months: Before I Forget

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Breakfast in Austin with friends.  I could even hear the young lady at the other end of the table.

Breakfast in Austin with friends. In spite of traffic noise, I could hear even the young lady at the other end of the table.  (That’s me in black at the end; my husband is next to me in the green shirt).

I’ve begun to forget how horrible it was before the CI.  Right now, I am a link between both worlds.  But if I forget how bad it was, my ability to articulate the pain of those who are struggling to hear will be lost.  So before I forget, here is a story:  

Back in the days before I even knew about cochlear implants, I went to a very noisy cocktail party.  I didn’t know many of the guests, so the struggle to hear and interact socially required a lot of energy.  My strategy consisted of sticking next to my hearing-husband and letting him do the interacting while I stood there with a smile on my face.  The trick was to not get separated from my husband.

At first, everything went well.  We found the few people we knew and caught up on their lives.  Since my ears do not do the hearing for me, I stood directly in front of people and read their lips.  The movement of lips, accompanied by bits of sound (not consonants, unfortunately) was sometimes enough to facilitate understanding.   I relied on other resources such as my vision, memory, social cues, and body language.   If I missed the beginning of a comment, I waited until something in context revealed the subject. I relied on my cognitive powers to process the clues and generate meaning.  Since I knew these people, I was familiar with names, places, and things they were involved in.  Constructing meaning from clues is exhausting, but possible.

Our small circle expanded to include new arrivals, and our cocktail party group conversation began to seem like watching ping pong.  The only way to keep up was to see each speakers’ lips at the moment they began to speak.  Since people didn’t wait until I was watching their lips to begin speaking, I could not possibly keep up with the back and forth of group conversations.  Asking for repetition would disrupt the flow and one repetition wouldn’t suffice.  I’d have to ask them to repeat again and again unless they learned to face me every time they spoke.  And that was not going to happen.  So I ramped up my focus, pushed my concentration, and worked.  I could not sustain this level of intensity for more than an hour, and I was reminded of research showing that constant overload of the cognitive function is thought to be a link to dementia.

And then it happened.  I found myself alone, face to face with someone I did not know whose lips I could not read because of his obscuring mustache.  Not a single word.  My husband was lost in conversation on the other side of the room and everyone I could have called on for hearing help was suddenly out of range.  Ditching mustache man was not feasible given the logistics of the tiny crowded room.  So you ask: Why not just tell him you’re hearing-impaired?  Simple:  Because I wanted to continue to exist.  When they realize you are deaf, even the most generous people eventually begin to leave you out.  And when you are left out, you are diminished.  Not as smart.  Not relevant.  When they do address you, some talk to you as if you are very old, or very young, or not all there.  You lose your dignity.  Even sitting with my family in my living room in the evening, the chairs too far apart for me to hear, my children address conversation to my husband, and not me.  I was slowly being buried alive. So the answer is: I would rather fake it than lose myself.

So there I was, looking for loopholes in his mustache, processing the occasional vowel sound, searching my memory bank for connections to body language, facial expressions, and vocal inflections–anything that might generate a clue to his meaning.  It was a risky approach and the longer I kept it up, the more ridiculous I would appear if he discovered he was talking to a deaf post.  Soon, I was in too far to confess.  And that was when he stopped talking and looked at me.  At first I thought I was nailed, but then I realized he had just made a point.  So I nodded.  He started talking again.  Depending on his expression, I responded to his pauses with vague affirmation, surprise, or a smile.  I did not understand a single word he ever said.  But I got lucky.  He was one of those people who are so self-absorbed he didn’t realize I wasn’t hearing him.  I shifted into park and relaxed while he carried on a one-way conversation.  It was a win-win: he got to expound; I got to hang out in the hearing world as if I belonged.  He never suspected, and I managed to coast for 20 minutes.

While I survived that evening, cocktail parties were destined to go the way of lectures, meetings, restaurants, movies, and plays, because I couldn’t hear enough to justify the energy spent.  When I went to see Dr. Peters and learned about the CI, I was on the verge of resigning from the hearing world.

This is what I have to remember.

Next time:  How My CI and I Got Into Hearing Trouble Before an Audience of 100.   

 

 

 

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9 thoughts on “CI At Six Months: Before I Forget

  1. Keri Reynolds

    Hi Cindy. I think of you often and wonder how you are and when are we going to share a brew of some sort. 😄

    I LOVE this post and I’m so glad you recorded your thoughts. This was me too 12 years ago. 😄.

    It’s so good to hear from you.

    Keri

    Sent from my iPhone

  2. Gloria Buckley

    Cindy, thank you thank you THANK YOU so much for writing this & posting it! It is so relevant & I hope so many with hearing loss who are not doing something about it will think about the impact it is making on their lives, and the lives of those dear to them. Can’t wait for your next post.

    Gloria ( your other audiologist!)

    Sent from my iPad

    >

  3. Barb

    I can’t begin to tell you how much you are speaking my story. Sometimes you feel like your the only one! How do you do in large group settings now with the Rondo? I really love the wirefree option, but feel I might be giving up sound ..talking on the telephone and waterproof options by going with a different brand? Does it stay on your head? Is it breakable?
    Really hoping for a non-biased opinion:)

    • Hi Barb,
      My purpose in sharing is to promote the CI and not a particular device brand, since my limited experience with one manufacturer gives me very little authority. That said, I will tell you that I made a list of features that were important to me and scored devices based on my weights. The waterproof option was not important to me, although I know people who chose a device on that basis alone. The rondo comes with three magnet strengths and I do not use the strongest magnet (saves battery power). It falls off when I forget it is there and brush my hair or pull a shirt over my head. It does not fall off in regular use. It is not breakable. I use my hearing aide ear to talk on the phone, so I can’t speak to the phone aspect at all. I received a behind the ear device as well as two rondos as part of a special promotion when I got my device, but I have never worn the behind the ear model. However, technology has improved since my surgery and people who have used both types of devices (Rondo and new/improved bte) say there is a difference. If I were choosing now, I would take the new technology into account in making my decision. Good luck!

      • Hi Barb,
        I still have trouble in noisy places, and my otologist says that I always will. All sound is amplified, so it can be hard to distinguish the voice talking to you from the other noises in the room. Some noisy rooms are worse than others, but my old coping skills still come in handy and the energy freed up from the overall improvement in my hearing sends me into those situations with more confidence. Instead of dealing a death blow to my struggling social interactions, noisy rooms are simply a nuisance to work around or avoid. In reasonable settings I can hold my own, socially, and that makes all the difference.

  4. Brigid

    I’ve been reading your story and this particular post is everything that I’ve been living with….hopefully for only 10 weeks more! I’ve been wearing two hearing aids for about 20 years….since my mid-30s and have finally been approved for bi-lateral CIs to be implanted on 11/19/2015. Thanks so much for your candid info….

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