Beth—February 4, 2014
We survived The Activation.
Barbara, the audiologist, presented Tina with packs containing the two processors, the behind-the-ear version (Naida) and the clip-on version (Neptune). I had less baggage when I traveled to Australia for two weeks. Right now, we’re focusing on the Naida—the manual looks like a Tom Clancy novel, but apparently only the first 62 pages are in English.
Barbara then started to assemble the pieces—so many packages, each with a booklet in six languages describing the piece, how it works, how to put it together, complete with warnings that it will cause choking if swallowed. After Barbara showed Tina how to assemble all the pieces and place on her head, she connected her to the computer but Tina said it was too loud. However, this program has the least amount of current possible so that Tina can slowly get used to hearing sounds.
The Naida processor holds five programs and this week is all about volume. Tina will switch to the next program every two days and slowly adjust to the increasing volume. I told her it’s like the guy who uses different length toupees to trick people into thinking his hair is growing and then got cut.
Back at the hotel, we entered the first of what will be many hours of Tina asking “what is that sound” and me responding “what sound? I don’t hear anything.” Tina described a constant sound and imitated a machine running. I suggested maybe the ice machine (“no, that’s not it”), the room heater (“no, not that either”), and then the mini-fridge (“that’s it!”).
Tina remembers loud noises from wearing a hearing aid, but with the new, small noises, she can’t decide whether they’re fascinating or annoying. I heard her flip the bathroom light switch on and off repeatedly until reporting with amazement that it made a clicking sound. The zipper on the duffle bag also got a lot of attention.
We ate dinner at the restaurant’s quietest table. Facing the room, Tina identified other people dining, music, and dishes, but when the waiter gave the special, she didn’t understand. Too bad, because I couldn’t, either, but it was an intense story about a sea bass that went on so long that he must have been explaining where this fish went to school and how it was caught. We ordered the classic pizza.
Tina was intrigued by the noise of her fork hitting the plate and that she could hear a woman clear across the room laugh. My voice sounds normal to her and even though she needs to lipread to make sense of voices, it was the first conversation in a month without a white board or computer.
To Tina, the world is exhausting and noisy. She’s well on her way with this journey, but as expected, it will be a long road.
Beth—April 6
(Editor’s Note: for reasons of space, I have not included the interesting and entertaining reports as Tina continued her visits with the audiologist and her ongoing rehabilitation.)
We are still trying to keep track of all the cochlear implant parts and what goes with what. We finally covered the dining room table with both processors and all of their accessories. I got 3×5 cards and colored markers and labeled what worked with the Naida, what worked with the Neptune, and what could work with both. Like a good systems engineer, I constructed use cases to define the configurations for different situations and recorded all the solution patterns. Tina just left me with all the papers and cards and went to watch HGTV.
The journey continues. Tina hears things I say I didn’t mean for her to hear. Yesterday she dragged me out on the deck to identify a really strange sound—the birds. When we meet with friends, she’s much more engaged in the conversation and learning how to understand better every day.
Mostly she is watching that last patch of snow in our backyard anxious to return to the golf course with her new processor—while I’m still checking off items on the test plan.
Beth—June 15
Tina graduated on Friday!
Tina has been studying hard. Besides working with the speech-language pathologist to train her brain to interpret the new sounds, she has been listening to audio books, although most of her training has been on the golf course listening to others in her group.
We have continued to work on listening exercises, where the highest level (10) asks her to understand the difference between “bait” and “bake” or “meet” and “meek”. The first level was focused on the number of syllables listening to the difference between “book,” “table,” and “spaghetti.” She left me behind at level 5 with single syllable words, because I can’t hear the difference between “shake” and “take”.
To make the listening exercises more interesting, I enlarged the work sheets and cut out the single syllable words to make mini-flash cards. There are 10 lines with 4 words on each level, for a total 300 words that I put in a Tupperware container. For this exercise, I pull a word out of the container and read it. The problem is that I can’t hear if Tina’s response is correct, so I let her grade herself. She puts the ‘right’ responses in one pile and the ‘wrong’ ones in another. At first her goal was to work toward having the “correct” pile larger than the “wrong” pile. Now she is trying to make the “wrong” pile smaller each time.
In December (before the cochlear implant), Tina scored 28% correct on the words with her hearing aid and we didn’t even talk about the phonemes (sections of words). Now, her hard work has brought her scores up to 65% word score and 88% phonemes. Since these are all single syllable words, I think this is an amazing score—and better than I would score.
The other amazing thing is Tina’s new audiogram. She has a stack of them going back to when she was a child, and the audiogram produced on Friday is better than any I have seen. While not as good as a “hearing person,” it does bring Tina back to the best she has ever heard, which is more than we were hoping for when we started this journey.
As the ranking deafie in the house now, I need to train Tina to face me when she talks to me—and wait for me to get my hearing aid on before chatting away. I am still adjusting to her ability to understand speech when not looking at the speaker. A few weeks ago on the golf course Betsy asked if anyone had a tissue. Tina responded by looking at her watch, so I tried to discretely tell her that Betsy did not ask for the time. Without looking up from her Garmin watch, she said, “I know, I’m multi-tasking. When I figure out what club I need, I’ll get some tissues out of my bag.” She looked up to confirm that the distance on her watch didn’t involve any hazards and walked to the cart to retrieve her golf club and a package of tissues. Her golf buddies are adjusting to keeping their comments to themselves now that Tina can hear them on the tee box and putting green.
Tina completed her visits with the speech-language pathologist and at the end of her audiology visit on Friday, Barbara told Tina she doesn’t need to come back for a year. That will be an annual check-up that she can schedule when she books her mammogram.
With that milestone, I’m no longer grounded and will start traveling again next week. Tina’s golf league begins the Juniper Cup tournament, so I’m not sure she’ll notice I’m gone. I’ve enjoyed reporting on Tina’s (and my) progress and we both appreciate the encouragement we have received.
Naida Photo: Advanced Bionics
