I cried, cussed and complained. I’m improving!

On Friday, I had a one month post activation follow up with my CI audiologist.  To start, she makes the mistake of asking me, “How are you doing?”  I then express frustration, disappointment, fatigue, uncertainty, etc.  All of this is interspersed with tears, some profanity, complaints and general whiny-ness.  I also apologize repeatedly and I am reassured that I’m not first complainer nor the worst of her patients.  Once I finish venting my audiologist says, “Well, let’s do some testing and see where you’re at…”

We go through 2 types of testing.  The first where I listen to tones of various frequencies and loudness.  That one doesn’t bother me too much although I confess that at times I’m not quite sure if I’m hearing the sound or imagining that I’m hearing the sound.  Maybe it’s the same thing 😉

The second test is the dreaded word recognition test where I’m supposed to repeat or guess single spoken words.  I’m not as tense as the last time and I feel like I’m hearing more correctly.

My results are good.  I’m up to 71% in the first test and I’ve improved on my word recognition score from 20% (my pre-implant level) to 58%.  I think my audiologist is both pleased and relieved, as am I.  So bottom line, I am doing better and the implant is working.  Because I was deaf for so long I’m not going to be an overnight success but I will continue to progress.  The challenges I face in navigating real world situations should improve with time as I get more used to hearing so much more and as I improve with overall hearing ability.

I expect a lot of myself and have trouble with not knowing what’s normal, what’s possible, what can I realistically expect.  I need to practice the art of appreciating the small victories and gifts along the way.  Remember, now I can hear raindrops falling on leaves…

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Hearing Diary Excerpts: 4/1 – 4/11 (Day 9 to Day 19)

My bilateral CI brother Bob recommended I keep a hearing diary and make notes of  both good things and not so good things as I learn to hear with my cochlear implant.  This is good for me, to see progress, and I can use it when visiting the audiologist to assist in making any program changes that might help.

Here’s a laundry list of the types of things I’m noticing with my developing hearing ability:

  • Heard raindrops on leaves.  My husband told me what I was hearing.  Frankly, I just couldn’t believe it.
  • Dance class.  Wore Harmony processor.  Better experience overall.  Music still awful.
  • Lunch in a noisy cafeteria.  Lot of trouble hearing.  More than before.  Why?
  • Audiobook listening while following along with hard copy.  Followed very well!  (connected via audio port on Neptune to my laptop sound port)
  • Listened to episode of Smash on iPad with direct connect audio port.  No captions. I could understand the bulk of it!  This is big.  Granted it was a show with most dialog filmed directly showing actors faces without heavy background music.
  • Road noise less of a roar but still very bothersome.  Burble-y sounding.
  • Someone called my name from behind me as I was walking to my car.  I heard them!
  • Aural rehab: improving a bit on the CLIX listening program downloaded from the AB Listening Room site 🙂
  • The wind.  Geck!  Still not liking that.  I visited a local Radioshack looking for wind screen cover for the mic but no luck.
  • The sound of my heels in hallways is killing me.  Blurgh!
  • Hardware issues on aqua mic for the waterproof Neptune processor.  My husband helps troubleshoot with earbuds and monitor setting on processor.  Post questions to Advanced Bionics site.  They contact me and send a replacement mic.  I am impressed with their responsiveness!
  • Some environmental sounds are still jarring, doing dishes, newspaper pages turning, keys, walking down the stairs in my house, typing on my computer.
  • Working with clients one-on-one pretty good, including a visiting professor with a heavy Polish accent.  I think I’m hearing some people more easily?  Voices I know, coworkers.
  • Lunchtime at local café. SOOO noisy.  Tried to tough it out.  Tail end of lunch rush wait staff started dragging metal chairs on a stone floor.  That was too much.  I had to leave.
  • Cleaning woman emptying trash at the end of the office day.  Loud!
  • Gym wearing Neptune with UHP.  Overall good.  The machine sounds are less jarring.  Was bothered by a guy on a machine, maybe 20 ft from me, who was clacking the handheld parts of the machine together.  That seemed annoyingly loud.  I kept glaring at him.  Others didn’t seem to be as bothered.
  • Listened via direct connect audio port to a webinar for work and 2 episodes of New Girl on Hulu.  That was pretty good.  The voices sounded a bit mickey mousey, but not consistently.  I didn’t get much out of the webinar in terms of comprehension, bits and pieces.  Found that turning the volume up helped with softer woman’s voice.
  • First dance class.  Decided to connect aqua mic on my Neptune and try that.  The sound was pretty bad, especially with music.  Most music sounded very unpleasant, garbled, jarring.  Single voices okay.  Multiple voices were very hard to distinguish between.  Echo-y.  Need to retest with better mic.
  • Gym wearing Neptune.  Pretty good.  Like the off-the-ear.  Hearing some very small snippets of nearby conversation. For example, trainer’s voice as he works with a client.
  • Work for the first time since implant.  Attended smallish meeting (about 10) with people whose voices I know.  Seating was arranged in semi-circle which gave me a good sight line to almost everyone.  It was okay.
  • Still having trouble with some voices that I did before.  Will this get better?
  • Noticing the high pitched s’s in voices.  Not too spikey.  Just noticing.
  • Accusing husband of being too loud.  Too loud?! Who woulda thunk.
  • Hearing Peter’s high pitched pet names for our dogs.
  • Hearing birds on the morning dog walk… beep…beep,beep…beep… beep, beep, beeeep.  At least I assume it’s birds.  I need a hearing buddy to explain sounds to me.
  • Mom’s stove makes electronic beeps when I set the temperature for baking.
  • Visit with my sister Nancy at a Starbucks.  I complain that it’s loud.  She says it’s not that loud.  Again, I’m told that my voice is quieter.

I can hear myself whistle

I don’t know why, but this cracks me up.  With my cochlear implant I can now hear myself whistle!  Before I would try to whistle and would basically hear nothing.  I assumed it was my hearing but I also wondered if maybe I wasn’t doing it right.  For some reason I asked my husband to whistle this morning and I heard it.  Then I tried it myself and voila!  It works. I laughed. And I was happy too.

photo of girl whistling from the 60's

Easter Sunday – Day 16

Some cool things happened today with my hearing.

I attended a large family gathering for Easter brunch.  Very noisy, lots of people, tough listening environment.  I was doing good?! It seemed like the Clearvoice feature of my processor was really working.  I could hear people’s voices over the background noise.  It was still challenging at times but I felt like I did better than before I had the implant.  Wow.  This is really exciting for me.

It was nice to catch up with family members that I hadn’t seen since my surgery and activation and share what’s been happening.  Everyone was very supportive and encouraging.  Since our family has 5 out of the 9 of us with severe hearing loss we understand each other’s challenges and struggles only too well.

Tonight I continued my streak when I watched an episode of Smash on Hulu, without captions, using the direct connect audio port from my processor to my laptop’s sound port.  I was able to understand the bulk of it.  I could also distinguish the characteristics of the different voices.  For example, one character has an English accent.  This is BIG.  Granted the show was filmed largely with direct shots of  the actors faces when speaking and there was no heavy background music.  Still.  This is big.

Finally, I finished an audiobook, not a children’s but a real grown up book, again directly connected to my processor.  I could follow it very well.  Very cool.

I’m no superman… One week follow-up

One week after activation I returned to the audiologist for testing, tuning and more equipment.

Repeatedly I heard from other cochlear implant users to have high hopes and low expectations.  Meaning that adjusting to the implant will take time and the full benefit will not be immediate, like putting on a pair of glasses.

So what do I do?  I get very disappointed that my testing results are not shooting through the roof.  The word recognition test again, which most people hate.  A man’s voice says, “Ready?” and then a word, which you are supposed to repeat or make a guess.  I cry because it’s not suddenly a miraculous event where I hear it all perfectly.  I test at about my pre-implant level of 20%.  However, I’m hearing a lot more sounds which gives me all the environmental sounds that I didn’t have before.  The audiologist reassures me that I’m normal, it’s only been one week, I’m hearing more, and will improve over time.  Of course I feel embarrassed and assume she doesn’t like me.  I’m five again.

Next the audiologist does new “mapping” for me where I’m hooked up to a computer with my processor plugged in and tones are played.  I’m supposed to indicate when the volume is at a high but comfortable level.  Since I’m still feeling flustered from the word recognition test I wonder if I’m doing it right.  Is there a right?

I’m her first patient to get Clearvoice which is a new software configuration that’s designed to improve voice quality and help with hearing voices with background noise present.  She asks if I notice an improvement in her voice quality and I do.  Later, I see people  raving about it in the online AB forums.  I’m such a newbie though that I may not be the best guinea pig for Clearvoice since I have so little experience with the implant without it.

I also got the new Neptune waterproof processor ,which is great because that gives me an off-the-ear wearing option that’s also waterproof.  I think it will be great for working out.  Waterproof is pretty wild too.  You’re supposed to rinse the equipment if you wear it salt water.  Rinse it?!  That’s like saying rinse your laptop off after you use it.  Hard to imagine.  The Neptune also comes with another big box of accessories, cables, cases, de-humifier, battery charger, manuals, etc.  So much stuff!

Some improvements I noticed since activation: Voices have gotten better, less spikes in sound where the high pitches are, especially the letter ‘s’.  Several people have told me that my voice is not so loud now.  I’m hearing all kinds of high sounds I haven’t heard in a long, long time or maybe ever.  Things like smoke alarms, alert sound in the car for fastening my seatbelt, the dogs id tags as they walk though the house, some annoying sounds my husband makes…

So what happens next?  The more exposure I get to different voices and situations the better I’ll do over time as my hearing abilities develop.  I’m looking forward to returning to work so that I can test it out more and practice more in real life situations.  My capabilities with the implant will improve over time as my brain figures out how to process all this new information.  Intellectually I get it, however  now that I’m at that point in my journey I find I’m having a hard time really believing it.  I feel like I don’t have a point of reference.  I can’t think of an example of anything else that’s been like this in my experience.  Best analogy I can come up with is going to the gym.  It takes time and consistency to develop a rockin’ bod 😉

It’s good that I’m writing things down.  It will be interesting to look back and see my progress over time.

Cochlear Implant T-Shirt

My sister and I wore cochlear implant t-shirts, that I designed, to my activation appointment.  The design was inspired by Sheldon on Big Bang Theory.  One of his t-shirts is of evolution theory culminating in a robot as the highest level of evolution.  I thought, well I’m not a robot, but I am bionic with my cochlear implant 🙂

Since I’ve gotten compliments on it, I created some options for anyone interested: http://www.cafepress.com/CItshirts

photo of woman's torso wearing t-shirt with evolution theory ending w CI user

CI Evolution Theory T-shirt