Week 3 – The Implant is Actually Starting to Work (and a Cool Link)

The last couple of weeks have been hell.  I had constant ringing and squealing in my ears that was almost unbearable.  I hardly slept, was constantly distracted at work, and was short-tempered almost all the time.  Last Thursday I ended up in the E.R. with excruciating ear pain, just to add insult to injury (it’s better now – was partly from my ear still recovering from surgery and partly from the way I hold tension in my jaw when I’m stressed, believe it or not).

This week I went into the audiologist for my first tune up, or “mapping” after having the implant turned on.  I got a standard hearing test, but could barely pick out the tones behind the constant barrage of noise in my ear.  After the test, the audiologist surprised me by saying he thought I needed to turn up the volume.  I actually cringed at the thought…I had already tried that during the first week, and it was excruciating.  So I braced myself (literally gripping the table and closing my eyes tightly) and he cranked up the volume.

Surprise! The tinnitus practically vanished!  And I could hear when he was talking!

I was shocked.  After the appointment, the interpreter and I were saying how counter-intuitive it was to make something loud and annoying even louder…and having that fix the problem.  It’s like telling people with ADHD to try stimulants, or suggesting people with arthritis get up and move more. The audiologist said some deaf people’s brains and ears actually struggle with quieter sounds, and do better with more noise and stimulation.  He said this happens sometimes – it’s just a quirky thing.

But who cares about the reasons it worked?  It seemed to do the trick. Now I’m at the point I thought I’d be on the first day of activation.  I can pick out when people are talking and hear environmental noises.  Of course, people sound like goofy high-pitched robots speaking gibberish, and noises aren’t recognizable.  But that should improve over time.  The tinnitus is still there when I take off my processor, but it’s very faint and tolerable.  When I have a lot of noise in my ear now, I know it’s because it’s noisy!

My five-year old son Zack is having a lot of fun helping me identify sounds, and I am constantly amused by what my ear is hearing, because I still remember what most sounds are supposed to sound like.  But there have been some admittedly cool moments, like when Zack was in the backseat with my iPhone and I suddenly heard a lot of noise – he told me I was hearing a movie he made with my iPhone!  I also was driving along at one point and clearly heard a “Mama” sound from the backseat when he was trying to get my attention (because he had noticed my gas gauge was on low).  Ironically, Zack’s voice is easier to hear than Tracy’s or most adults, so he’s taking his self-imposed teaching/auditory training duties quite seriously, and using a fun combination of talking and signing with me.

And yesterday I heard one of the most beautiful sounds I have heard since I became deaf – a soothing rhythmic sound like waves of the ocean.  It was so beautiful I just stopped and listened for a while.  It was a backhoe moving dirt at an SU construction site, going back and forth, and back and forth. 🙂  During a break between meetings, I asked my sign language interpreter Amy if she wanted to go listen to the backhoe for a while with me to relax, but she politely declined, believe it or not.  It’s hysterical to know how awful that sounds to hearing people, and then to think about me standing there with my iced tea from Starbucks, sort of rocking and enjoying the noise.  My co-worker suggested that some of our autistic students might be willing to go with me if I can’t find any hearing people to tag along – and she was serious.  I love my job.

I’m now feeling more confident that the implant will do what it’s supposed to do, and will support my lip-reading at some point.  I also like the idea of hearing more environmental noises.  And I’m learning how to work with an interpreter while getting some auditory input.  So I’m finding my groove.  In two weeks, I go back to the audiologist and he will adjust the three channels of the implant for three settings: the phone, everyday conversation and work, and for music.  My homework until then is to get a bunch of children’s books on CD and to listen to them over and over.  My brain is like a child’s – it needs to hear simple words first with lots of repetition, and then it will be able to learn more complicated speech.  I’m also supposed to continue turning up the volume as much as possible – the louder the better. Still seems weird that I would even want to do that!

I think we’re through the worst now, and I’m curious about what the next few months will bring.  I’m not gonna lie – the last two weeks have been tough on me, my wife Tracy, and my kid.  We’re all grateful for family, friends, and co-workers who have offered support.

On a final note, I just so happened to find a very cool video by a woman in the UK who is a lot like me – she uses whatever is at her disposal for communication and enjoys skipping around between Deaf/hearing worlds and mutations of both:
http://www.youtube.com/watch?feature=player_detailpage&v=icPsm9RnO2E
It looks like the video might simulate implant sounds for hearing people, too.  She’s a physiologist, so there’s also some technical info about the implant.  It’s also captioned!

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17 Responses to Week 3 – The Implant is Actually Starting to Work (and a Cool Link)

  1. David Salchow says:

    Keep it up Wendy! It’s very encouraging and inspiring that there may be at least a partial cure for the hearing impaired. I’m confident that all your discomfort and effort will be worth it in the end.

    Dave

    P.S. When next we meet, my voice today sounds exactly like James Earl Jones. … Honestly.

    • Wendy says:

      Dear Dave, lovely to hear from you (pun intended again). Not really looking for a cure – then I might lose my job. 🙂

      And yes, I remember your senior speech in high school. “James Earl Jones” was exactly what I remember thinking as I sat there listening. Hm.

  2. Jessica Bochmann says:

    I’m so happy to hear that there is finally progress! I think this blog is a really excellent way of documenting your experiences with the cochlear implant. I believe others will truly benefit from your input. It is puzzling that the solution to the problem was to turn up the volume. It sounds as though the implant must have been working harder to pick up those smaller sounds and in turn doing more harm than good. But, I guess you had to start somewhere! When times are tough and your spirits are low, just remember that you’re paving the way for others who may also benefit from the cochlear implant surgery.

    Best of luck!
    Jessica Bochmann

  3. Jay Duncan says:

    Wendy this is AWSOME to say the least. I am so happy for you.

  4. Uncle Jim says:

    Wendy, this is such good news. I am awestruck at what can be done these days. Love and faith will make for a new and different world for you. Hang in there!

  5. Chris Cheney says:

    Wendy,
    Congratulations on having something cool to blog about. What an amazing experience.

    And since my kids are 10 and 12 do you have any leads on getting a “silence maker”? After watching/hearing the video from the Cambridge student, I thought it would be nice to have the option of turning the audio world tuned off (and hard to have it on). I hope the implant gets you where you want to be.

    Chris Cheney

  6. Cleti Cervoni says:

    Wendy, you are one brave woman! Congratulations and I look forward to following you. Best, cleti

  7. Kelly Way says:

    Wendy,

    I have to say I am officially thoroughly confused by the solution to the ringing, but hey! Whatever works! Just goes to show us nothing is typical and no one should assume anything!

    I am so happy this experience is starting to turn around for you. After talking to you in class last week, I was ready to write a disclaimer notification to distribute to anyone thinking about cochlear implants (except mine wouldn’t be written in tiny print no one can read, or signed and spoken so fast that no one can quite tell what is actually being said- but written in HUUUUGGGGGEEEEE letters both on paper and electronically, spoken very slowly, clearly, aannndddd signed by interpreters in every form of sign language, not just ASL! Hell might as well put it in brail to boot.) How could they “forget” to warn you about all of those complications??? So hearing how much better things are going this week made me realize that cochlear implants may not be evil torture devices after all 😉

    Keep up the good spirits! Just remember you not only have your family, friends, and coworkers to support you, but an entire class of graduate students as well!

    Good luck!

    Kelly Way

  8. Claire says:

    The second you said it’s like stimulants for people with ADHD I got it. It’s funny how those things work, but I am excited that you are getting it sorted out. I am so excited that you could hear “mama” how cool that must have been for you. Can’t wait for more stories of success.

  9. Lauren Shallish says:

    Wendy, my office over looks the SOE beach! Come hang out anytime. I’ll make umbrella drinks.

    This blog is fantastic. Looking forward to reading your posts!

  10. Daniela says:

    Finally! Thank you for this post … I had no idea!
    In 2007ish, I used to be in a band (I played bass
    if you care) who had a song about this … we named it “Wonderman”
    – do not ask.

    Anyway, great piece. Thanks so much!

  11. What’s up, of course this article is truly nice and I have learned lot of things from it on the topic of blogging. thanks.

  12. Darrell says:

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  13. Adeline says:

    An intriguing discussion is worth comment.
    I think that you ought to write more about
    this issue, it might not be a taboo matter but usually people
    do not talk about such topics. To the next! All the best!
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