Tuesday, October 30, 2012

Fruits

For listening practice tonight, William and I picked a page from a Baby Einstein book with pictures of fruits: apple, watermelon, banana, grapes, orange, and blueberries.  We fancied it up a bit by having me listen to try to guess which word he was saying.

"Grapes" was the clearest word, and I guessed that one correctly most of the time.

"Watermelon" and "banana" were hard to distinguish, but I could sometimes tell that there were three syllables in the word.

"Orange" was tricky.  Too tricky.  I often mistook "orange" for "banana" inexplicably.

"Apple" never sounded right. Every time William said, "Apple," I heard, "Lemon." Every single time.  "Lemon" wasn't even an option!  After enough of that, I explained to William what was going on, and he said, "That's crazy." And I said, "Because they sound so different to you? And they sound exactly the same to me." Then I started to cry, and practice was over.

It is so obvious that I have overcompensated for my hearing loss by developing alternate listening strategies: lip-reading, trying to guess the context of a conversation based on the words that I can pick out, observing body language.  I think that these strategies will come in handy, and I don't plan to jettison lip-reading any time soon, because that tends to impress people a lot.  But learning how to listen, without any external cues, is almost impossible.

Monday, October 29, 2012

Speed Reading

(This one is by William.)

I noticed several people who know Rebecca commenting that she reads much faster than most people, and that reminded me of something.

We had only been married for a short time when I realized that Rebecca read much faster than I did. I remember several times showing her some article on the computer -- we would both be reading to ourselves and Rebecca would get impatient because I was taking too long to scroll the page.

I never thought anything of it. I always assumed that everyone read at a different speed, and that I was at the slower end of the spectrum and Rebecca was at the faster end. But then one day I learned a new word and my eyes were opened. There is actually a reason that Rebecca reads faster than I do. That word, that reason, is subvocalization.

Subvocalization is when you hear words in your head while you are reading to yourself. When I read something, I actually imagine a voice (usually my own voice) speaking the words. Sometimes I even move my mouth slightly or speak the words under my breath. As a result, I usually cannot read any faster than I can speak.

I asked Rebecca about this, and she told me that she hears no such voice in her head when she reads. She doesn't subvocalize (at least not nearly as much as most people do), and therefore her reading speed is not constrained by the time it takes to speak words aloud.

That is why I think Rebecca reads so quickly.

Sunday, October 28, 2012

A small success!

This morning in the car on the way to church, we were listening to Primary songs. I usually can't hear the CD's in the car, especially anything with vocals.  This morning, I distinctly heard "If You're Happy and You Know It."  Here's what I heard (with my implant and my hearing aid both on).

If you're happy and you know it, clap your hands.
If you're happy and you know it, touch your nose.
If you're happy and you know it, blink your eyes.
If you're happy and you know it, touch your ears.

And just now, we checked the lyrics in the song book.  Here's how it actually goes.

If you're happy and you know it, clap your hands. (Check!)
If you're happy and you know it, tap your toes. (Close!)
If you're happy and you know it, blink your eyes. (Check!)
If you're happy and you know it, snap your fingers. (Well. There's always room for improvement.)

Just wanted to put that out there.  A small success!

Sunday Thoughts

I've got a lot of different things on my mind, not necessarily related except that they've popped into my head throughout today.

I went back to church for the first time in weeks.  It was good to be back.  Sacrament meeting was loud as always.  I tried to listen to the talks as best as I could, but the effort was tiring.  Listening out of one ear (which is basically where I am while I'm getting used to the implant) and trying to lip-read from afar, while keeping an eye on two girls in constant need of attention or snacks, amidst dozens of other families also trying to manage their noisy small children, was a challenge.  So, if you were to ask me what the talks were about, I would not be able to give a terribly articulate answer.  But it was good to be back.

The closing hymn was "Come, Come Ye Saints," which we Mormons sing whenever we need something pioneer-y.  It was written during the Mormon trek westward to the Salt Lake valley and was inspired by the always present challenges and hard to recognize joys along the trail.  The second verse touched me today.

Why should we mourn, or think our lot is hard?
'Tis not so; all is right.
Why should we think to earn a great reward
If we now shun the fight?
Gird up your loins, fresh courage take.
Our god will never us forsake.
And soon we'll have this tale to tell--
All is well! All is well!

Now, it would be presumptuous to think that my lot in life is terribly hard, because it isn't. Not by a long shot. I'm just trying to learn how to hear again, which is tricky, but I'm told that it's not impossible.  The last few days have been discouraging nonetheless because my progress is so hard to recognize.  Nothing sounds much better than it did on Wednesday, and the effort of listening is so mentally tiring. I usually go to bed with a headache. I'm going to stick with this, though, because I have hopes that there is indeed a great reward in store somewhere at the end of this road back to hearing.



Turns out that my audiologist Amy is reading this blog, too!  She emailed me this morning to respond to some of the things that I described in previous posts.  (That's great customer service!) She also shared with me the steps back to hearing. It's a nice little checklist that I hope to get through eventually. Right now, I'm definitely past step 1 but not quite fully into step 2.
It's great to hear you are doing your homework!  I know it's going to be frustrating, but that's the only way to get your brain "adjusted" to all the new input. It's similar to learning a new language – you have the language in your head, but you have to associate the NEW sounds with the words already in your head.  Keep in mind the stages of sound identification, since this will help you figure out where you're at.  Here's a quick summary, as simplified as I can make it:
  1. sound on vs. off
  2. Syllbable identification  (single words) - given the topic
  3. Vowel identification (single words) - given the topic
  4. Consonant I.d. (multiple levels of this actually, in words) - given the topic
  5. Word I.d. (single words) - given the topic
  6. Word I.d. At the END of a sentence only…and later in middle, then beginning of a sentence - given the topic
  7. 1-2 word I.d. At end of a sentence, then middle, then beginning - given the topic
  8. Single word I.d. WITHOUT a topic given
  9. 1-2 word I.d. WITHOUT a topic given
  10. Sentence I.d. WITHOUT a topic given
Interesting stuff, no?



My Primary class was happy to see me back.  (I teach three 9 and 10-year olds each week, kind of like junior Sunday School.)  One of the girls asked me how my ear was doing and seemed concerned when I told her that I still couldn't hear very well out of my ear. I wonder if she thinks that my surgery didn't work.  Sometimes I wonder that, too. Ha!

Friday, October 26, 2012

Alone with My Girls

This afternoon, my mom went home. She's been with us since Monday and has been a life-saver in helping with the girls, driving me around while I'm shaking off the last bit of vertigo, buying groceries (and the cutest red ballerina flats for me), and being a generally stabilizing and encouraging force amidst some serious upheaval to our daily routine. She was there the first time I learned how to hear, and this week she reminded me several times, "You did this once before. You can do it again."  So I miss her, and the girls miss her.

I had about three hours between the time she left and the time William got home from work.  I think it's the first time that I've been alone with both girls in over two weeks, and certainly the first time that I've been alone with them with my hearing being bad in my left ear and terrible in my right.  Molly's vocabulary is limited to babyspeak and cooing, so she's pretty easy to understand. If she wants something, she yells unintelligibly. If she's happy, she goes around babbling, "Day day day day day."  Sometimes she growls. It is all really cute.

My three-year old Emily is a different story. She started speaking in sentences at 18 months and pretty much has not stopped talking since. She always has something to say. Always. She's also currently in the throes of the "Why?" stage.  It's endearing because she's so curious about everything, but it also keeps me on my toes for good answers to her questions. (I'm trying really hard not to take the lazy route and just respond with "Because." to everything.)

The point here is that my girls make a lot of noise, and it never stops.  So, we were home alone this afternoon, and I was trying my hardest to keep up with what Emily was saying, all the while listening to Molly's happy babbling in the background.  It was utterly exhausting. Emily kept moving around and looking away from me, as three-year olds will do, so lip-reading didn't help. I am really nervous about how I am going to manage the girls all day, every day next week and the week after that up until the point when my implant is actually producing intelligible sounds.

After they went to bed, William and I  pulled out Bright Baby Touch and Feel (Colors) and did a little more homework.  At some point this afternoon, I had realized that I could barely hear out of my implanted ear, not even bells or ringing, so I wanted to see if doing homework would help me figure out what was going on.  The only sound that was coming through was some unidentified ambient noise. I had my implant remote and decided to play around with the volume to see if I could help. Lots of button pushing later, William's voice started to be slightly intelligible, which is an improvement over yesterday.

However, regardless of where the volume level is set, the implant continues to produce a constant buzzing sound that masks any other potentially intelligible sound.  I don't know if this is something that my brain will learn to filter out over time or whether my implant's programming is in need of some serious fine-tuning. My next appointment with Amy is on Friday, November 2, so I have a week to figure this out.  But right now, it's driving me nuts!

Bonus Post: Pumpkin Bread Recipe

Lots of heavy stuff on the blog lately!  Time to take it easy for a day. I have long dreamed of being a food blogger without having gotten any real traction. Anytime I find a recipe that works, I want to share it with the whole world.  It seems like a good part of the world is reading my cochlear implant blog these days, so I'm going to combine genres and share the recipe for the pumpkin bread that featured so prominently on Activation Day.  This is from Cooks Illustrated's September 2012 issue. Those people do not mess around.  Folks, cream cheese inside pumpkin bread=genius.  You're welcome!

Really Good Pumpkin Bread

Makes 2 loaves
The test kitchen’s preferred loaf pan measures 8 1/2 by 4 1/2 inches; if using a 9 by 5-inch loaf pan, start checking for doneness five minutes early.

Ingredients

Topping
  • 5 tablespoons packed (2 1/4 ounces) light brown sugar
  • 1 tablespoon all-purpose flour
  • 1 tablespoon unsalted butter, softened
  • 1 teaspoon ground cinnamon
  • 1/8 teaspoon salt   
 Bread 
  • 2 cups (10 ounces) all-purpose flour
  • 1 1/2 teaspoons baking powder
  • 1/2 teaspoon baking soda
  • 1 (15-ounce) can unsweetened pumpkin puree
  • 1 teaspoon salt
  • 1 1/2 teaspoons ground cinnamon
  • 1/4 teaspoon ground nutmeg
  • 1/8 teaspoon ground cloves
  • 1 cup (7 ounces) granulated sugar
  • 1 cup packed (7 ounces) light brown sugar
  • 1/2 cup vegetable oil
  • 4 ounces cream cheese, cut into 12 pieces
  • 4 large eggs
  • 1/4 cup buttermilk
  • 1 cup walnuts, toasted and chopped fine

Instructions

  1. FOR THE TOPPING: Using fingers, mix all ingredients together in bowl until well combined and topping resembles wet sand; set aside.
  2. FOR THE BREAD: Adjust oven rack to middle position and heat oven to 350 degrees. Grease two 8 1/2 by 4 1/2-inch loaf pans. Whisk flour, baking powder, and baking soda together in bowl.
  3. Combine pumpkin puree, salt, cinnamon, nutmeg, and cloves in large saucepan over medium heat. Cook mixture, stirring constantly, until reduced to 1½ cups, 6 to 8 minutes. Remove pot from heat; stir in granulated sugar, brown sugar, oil, and cream cheese until combined. Let mixture stand for 5 minutes. Whisk until no visible pieces of cream cheese remain and mixture is homogeneous.
  4. Whisk together eggs and buttermilk. Add egg mixture to pumpkin mixture and whisk to combine. Fold flour mixture into pumpkin mixture until combined (some small lumps of flour are OK). Fold walnuts into batter. Scrape batter into prepared pans. Sprinkle topping evenly over top of each loaf. Bake until skewer inserted in center of loaf comes out clean, 45 to 50 minutes. Let breads cool in pans on wire rack for 20 minutes. Remove breads from pans and let cool for at least 1½ hours. Serve warm or at room temperature.

Thursday, October 25, 2012

"Eyes. Ear. Mouth. Nose." A Day Later

The response to the Activation Day post has been tremendous.  I'm astonished and touched by the outpouring of encouragement from my blog readers. It warms my heart to know that so many people are reading this story and cheering for me on the way.  For that, I thank you.

That's why it makes a little hard for me to rain on everyone's parade here.  But for the sake of keeping this real and after having some time to reflect on how to articulate this, I'd like to explain what was happening in the magic moment at the end of the video.

Amy was talking, and I was trying to make some kind of sense of what I was hearing.  I had a memory of Amy's voice. And all I could hear at the beginning of the appointment was bells, bells, bells.  Nothing intelligible was coming through. But Amy kept talking in her distinctive voice, and at some point, the sounds that I was hearing with my implant started to resemble what I remembered of Amy's voice.  It was very faint and not intelligible, but underneath all the ringing and bells was a hint of Amy's voice. That was the "A ha!" moment in the video.  In essence, I was able to reconcile what I remembered (thank you, neural networks!) with what I was then hearing.  The video makes it look far more comprehensive than it was.  While I don't discount the miracle of being able to perceive anything at all, I also don't want to give the impression that the implant somehow flipped the "Hearing: On" switch in my brain and now I am ready to go to the opera.

The challenge from here on out will be to replicate the first day's experience times every sound that I was able to hear with my hearing aids, and then add on all the sounds that I wasn't able to hear before.  That's a pretty big registry of sounds. 

So, tonight, I started small, with my husband William's voice.  We did our homework as Amy explained: find a quiet place to talk one on one and start going through words.  Armed with Bright Baby Touch and Feel (the Numbers and Colors editions) and Happy Baby Words, William and I headed to the living room to get away from the dull roar that I'm hearing from my refrigerator.  He started to count, with the Numbers book as a visual cue for me.  And then "I'm going to cover my mouth, and you tell me which number I'm saying."  I closed my eyes to make sure that no one would accuse me of cheating and tried to listen.  I heard nothing but bells.  One guess that I hazarded was "Three," and William had actually said, "Two."  Hmpf. Then he switched to the colors book.  "Yellow. Red. Green. Orange. Purple. Brown. Blue. Pink. Black. White."

At this point, I began to cry out of frustration. Nothing was intelligible.  Still bells all around.  At best, I could tell that there was something in the room generating a sound, but the nature of the sound, its direction, and its source were a mystery (except that I knew it was William trying to read colors to me.)  No "A ha!" moment. He tried again, unruffled by my tears. (He used to do IT desktop support. He knows how to handle emotional people.) Still nothing. We changed our approach.  I closed my eyes, and he read each word five times while I listened.  The word that was most intelligible was "purple."

We switched to Happy Baby Words.  Each page has four words on it, so I suggested that we just work on the first three pages and repeat.  "Eyes. Ear. Mouth. Nose."  Turn the page. "Hand. Back. Legs. Toes." Turn the page. "T-shirt. Shoes. Pants. Dress."  Back to the beginning.  I had William read the first page several times.  "Eyes. Ear. Mouth. Nose. Eyes. Ear. Mouth. Nose." He read the words over and over as I listened. He turned the page and did the same with the second set of words and again with the third set of words.  I had him go back to "Eyes. Ear. Mouth. Nose." over and over. He kept reading, always patiently.  At some point during that tedious sequence, I heard something familiar underneath all the bells and tones.  William's voice was faintly coming through. "Eyes. Ear. Mouth. Nose."

So, this is where the road to hearing begins.  It's not an especially auspicious beginning, and I expect more tears over the coming days and weeks, but at some point, I must be able to look back and realize that somehow, imperceptibly but certainly, I'm making progress.  "Eyes. Ear. Mouth. Nose."

Wednesday, October 24, 2012

Learning How to Hear for the Second and First Time

William did a very nice job of writing about what happened at the appointment, and the video cuts out a lot of the less interesting parts of the Activation Day appointment this morning.  My homework now is to practice listening to words from one person at a time in a quiet room with only my implant on.  (Today, I had my hearing aid in my left ear for practical and safety reasons.) My mom is going to be the first to help me with homework tonight, and if I'm lucky, I might be able to understand her voice a little bit by the end of it.  We're going to keep it simple. I imagine that I'll get out some of Molly's baby books and go through them. "Ball." "Bath." "Kitty." Rigorous stuff.

I love parallelism, so here's some more from my dad about the first time that I learned to hear.
Because hearing impaired children often have serious challenges in learning to communicate, the therapist recommended to us to enroll Rebecca in two-year old pre-school classes later that year. Additionally, she would attend weekly therapy sessions at Sunshine Cottage. Practically speaking, that meant that her mother would have to load Rebecca (and a newborn brother) into a poorly air-conditioned 1971 Datsun and drive her to San Antonio for therapy every week. If there is a hero in this story, it is her mother.

Also, hearing-impaired children have to “learn” how to hear, meaning that they need to associate an aural impulse with some particular meaning. Again, the role of “teacher” fell to Rebecca’s mom, who often would react to a particular sound by pointing to her own ears and saying to Rebecca, “I hear that!” so that Rebecca could catch on.

We had been under the na├»ve impression that as soon as Rebecca could hear sounds, she would suddenly learn to talk. That was also a slow process, assisted by much therapy – formal and informal. If one cannot hear a sound very well, it is very difficult to imitate it in speech. That is why hearing-impaired children have such a hard time making the “sss” and “zzz” and “shhhh” sounds. They just can’t hear these soft sounds. We have been grateful for the dedicated work of school district speech therapists who have helped Rebecca.
Oh, a word about learning to talk. Dad points out that my hearing loss cuts out high frequency sounds, so I've had trouble reproducing sounds I can't hear. Today at my appointment, Amy was asking about whether my hearing had changed at all over my lifetime. She kept saying, "The way you talk makes me think that at some point when you were young, you were able to hear those sounds."  Even after my mom got there and insisted as nicely as possible that my hearing has always been terrible, Amy didn't seem terribly convinced.

Here's the deal. I had to suffer through years of frustrating, maddening speech therapy while I was in public schools. I don't remember being a terribly cooperative patient, but little kids don't often have much say in what grown-ups make them do at school.  Nor did I really understand the point of it. And I especially hated being pulled out of class to go do special ed stuff.  When I was at BYU, upon recommendation from my dad, I had two more years of therapy in their on-campus clinic with graduate students. Everyone loved me because adult patients were so hard to come by. I was a much more cooperative patient by then. And here in Austin, I had a friend who was a speech therapy graduate student, so for about a year, I would go to her apartment once a week for therapy sessions.  It has taken me a very long time to get where I am today. And maybe once I'm comfortable with the implant, I'll be ready for even more therapy.

What I Saw at the Activation Appointment

I took today off from work so I could drive Rebecca to the audiology office and be with her when they activated her cochlear implant. Rebecca's mother Ann is in town to watch the girls.

The morning was mostly normal. Rebecca wanted this day well-documented, so I spent some time taking videos with the camera (with Ann's help) of everyone getting ready. We all had a nice breakfast together then Rebecca and I drove to the office.

We waited only a minute or two before Amy, Rebecca's audiologist, welcomed us in and led us back to a room. She had some cables connected to a notebook computer and an assistant, Ashton, who will be receiving her Ph.D. in May.

Rebecca sat next to the computer and Amy and Ashton started putting various implant pieces together. Part of the processor is held on to Rebecca's head with a magnet, and it took them a few tries to pick a magnet that was strong enough to hold on but not so strong that it would give Rebecca a sore on her scalp. They settled on a "number 4" magnet, whatever that means.

The part of the implant that is inside Rebecca's cochlea contains a series of electrodes that stimulate different parts of the auditory nerve. Stimulation in different parts of the cochlea is what makes sounds different. An electrical impulse in one part of the cochlea is interpreted by your brain as one sound, and an impulse in another part of the cochlea is interpreted as a different sound.

The first tests Amy did involved activating one electrode at a time and sending electrical impulses, starting very weak and gradually building up until Rebecca either heard or felt something. The processor would send a series of pulses to the implant, and if Rebecca did not hear anything or could not determine how many impulses were sent (between 1 and 5), Ashton (who was working the computer) increased the power.

This process was repeated for each electrode (I think there are 22). Rebecca described the sounds she was hearing as low bells ringing, with lots of reverberation.

After Amy was satisfied with the power levels on each of the electrodes, she turned them all on at once, at a very low volume. The entire process is quite gradual, but if we had to point to a moment and say, "This is when we threw the switch,"this is that moment.

With the implant on, Amy started to talk to Rebecca. At first, she said she only head the bell sounds, one on each syllable that Amy spoke. But after a surprisingly short time, Rebecca started to recognize Amy's voice. "I can hear you!" Rebecca said, holding back her tears. It was moving and incredible touching.

Hopefully the above explanation will help you understand what is going on in this video:


Cochlear Implant Activation from William Jackson on Vimeo.

The processor (the device you see behind Rebecca's ear) contains the microphones that pick up sound. It converts those sounds to electrical impulses that are sent through the headpiece (the round thing that holds to the side of Rebecca's head with a magnet) to the implant inside Rebecca's head. All the external parts can be turned off, and when they are Rebecca won't hear anything in her right ear. So if she wants it to be quiet, she can make it quiet.

It's Alive! Initial Impressions

We just got home from my implant activation. I will write more later, but here are initial impressions.  Everything sounds like a bell with a ton of reverberation.  My grandma had a Wurlitzer organ that we played with all the time, and it had different buttons to change the reverb. Being the really annoying kids that we were, we always turned the reverb level as high as we could.  That's what I'm hearing right now. 

Voices sound like low-toned bells.  I could hear the audiologist's voice, but soft-spoken William is still hard to hear.  Every other noise that I hear sounds like a bell: footsteps, typing on my keyboard, William turning the key in the ignition, the garage door.  Here's another way to think of it: a microphone that's turned up too high. Just before the feedback starts, the speaker's voice sounds whiny and words are not necessarily intelligible. 

The volume is turned way down on my processor, so I will start listening at a level that's comfortable and then turn it up incrementally.  I can still wear my left hearing aid, which will be very helpful while I'm figuring out how this wonderful world really sounds.  And that's how Day One goes.

Tuesday, October 23, 2012

Update: I'm feeling better!

It's become clear that some of my readers are under the impression that I am still in bed with a blanket over my eyes, trying to keep any bit of food down.  Well, I'm pleased to report that two weeks after surgery, I am feeling much better.

Whatever magic the PA worked during my post-op check-up worked, because my dizziness started to go away the next day.  I stayed out of bed all day on Friday and Saturday, and the only pain medication I took was a couple of Tylenol at night.  I was feeling well enough to go to stake conference* on Saturday night and then out to dinner afterwards. On Sunday, I made a fancy dinner with William.  And on Monday, I did a bunch of laundry and housework, so in some aspects, life is back to normal.  My sense of taste is slowly coming back, and my mouth isn't drooping anymore. (If my sense of taste had been permanently damaged, that would've been the most tragic thing ever to happen to me, even more than being born deaf. I cannot even imagine never being able to taste French fries dipped in honey mustard again.)

I still have a bruise under my right eye that mostly just looks like I got carried away with the green eyeshadow. Riding in the car is still giving me a little bit of difficulty, so I don't trust myself to get behind the wheel just yet. But each day is an improvement, so I expect to be back behind the wheel sooner rather than later.  Brighter days are indeed ahead!

I've been without hearing in my right ear for two weeks now.  My left ear has been doing a lot of heavy lifting, if you will.  It has been frustrating not to hear as well as I'm accustomed, but something is better than nothing. I'm also mindful that two weeks of not being able to hear well is a good reminder for me that I have been so fortunate, given the level of loss that I have.  So many children never have the opportunities that I had, and life is really, really hard for them. I've largely been spared many of those challenges and have been able to make the most of what little hearing I have. For that I am most thankful.

*On Saturday night's session of stake conference, without any warning, I was picked out of an audience of hundreds to share a testimony. First of all, I was glad that I'd put some make up on. Second of all, I was glad that I had some things of a spiritual nature recorded in my blog that I could cobble together into a semi-coherent message. So, I talked about the thing that has consumed my thoughts of late, my cochlear implant. And by the time I finished, I didn't see many dry eyes in the audience. Mission accomplished.

What to expect on Activation Day

Today I got an email from Amy, the audiologist who will be activating my implant tomorrow at 9. Here's what she said that we can expect.
For activation tomorrow, you can bring ANYONE you'd like. My room is only big enough for about 2 other adults, and your kids would probably get VERY bored, so just keep that in mind.   Also – I don't mind at all if you record, video, take pictures, etc., of your visit tomorrow.  It's your appointment, so you can do whatever you'd like.  The first 45 minutes will be not very eventful. I will put your processor on your head, make sure the magnet and headpiece stay in place, check the function of the internal implant, etc.  Then we'll spend about 20-30 minutes having you listen to EXTREMELY soft beeps at different pitches.  This will help me set the very softest level for your first set of programs.  Then we'll turn on the sound, adjust it until it's comfortable…all while you are slowly adjusting to the new sound of your implant.  It will takes us another 45-60 minutes to review ALL of the equipment that you'll be using, as well as appropriate auditory rehab exercises to do at home.

Let me know if you come up with any questions before tomorrow.  I really look forward to seeing you and turning on your implant!!  It will be the beginning of a whole new journey!

And that's it.  Stay tuned for pictures and if it's not too embarrassing, a video!

The Master Healer

My cochlear implant will be activated tomorrow at 9 a.m. ish. I imagine that there will be some fiddling around and adjusting before the sounds come in.  What no one can predict is whether I will recognize or understand the signals being sent to my brain.  Many of the impulses will be entirely new to my brain. Sounds that I've never been able to hear include s, z, and the difference between sh and ch. There's a whole range of high frequency pitches that I can't hear, either.  Think the top two octaves on a piano. There's likely to be a steep learning curve as my poor 33-year old brain attempts to figure out what to do with all these new interloper sounds trying to forge new neural pathways. I imagine it being like a whole bunch of people showing up at my brain's orderly, well maintained house and knocking on the door, demanding to be let in at once to do some major remodeling. After the implant is activated, I'll have homework, and William (and anyone else patient enough to take me on) and I will practice listening, recognizing, and categorizing a whole new set of sounds.  Turning the implant on is not the end, but rather, one more step on the road back to hearing.

With that background in mind, on the eve of activation, I want to record something that I've thought about for many years.  The New Testament records the miracles that Jesus Christ worked during His ministry.  Of special significance to me are the healings of the deaf and the blind.  Mark 7 records Christ's healing of a deaf man with a speech impediment.  The man is brought to Christ by his friends. The account doesn't record any conversation between Christ and the friends, but rather, Christ takes the man, puts his fingers into the man's ears and then touches the man's tongue.  With the simple, "Be opened," the man's ears are opened "straightway" and his tongue is loosed and he speaks clearly, likely for the first time in his life.

John 9 records the healing of a man born blind. I've always liked this miracle because Jesus teaches that the man wasn't born blind as a punishment for sin, but rather, that the works of God could be made manifest.  And how!  Jesus anoints the blind man's eyes with clay and instructs him to wash the clay off in a nearby pool. The Bible records that the man washes and comes away seeing.

Understanding a little about how the body compensates for a missing sense, such as sound or sight, I see that these healings are actually two miracles in one.  The first miracle is that Jesus corrects whatever physical defect caused the first man's deafness and the second man's blindness.  The second miracle, and the greater accomplishment, is that these men's brains immediately know what to do with the signals coming in from their restored senses.  The deaf man's brain immediately recognizes, understands, and reproduces the sounds coming at him, since he's able to speak without impediment.  The blind man's brain receives the signals from his newly restored eyesight and immediately recognizes what it's seeing, Jesus, his friends, the man's parents, etc, all people that he'd never before been able to see. The fact that Jesus' miracles can overcome all of the disadvantages of being born with a missing sense and restore them perfectly is a testimony to me that He is indeed the Master Healer.

And these types of miracles are not limited to physical defects.  His Atonement covers all limitations and shortcomings and can, through exercising faith, restore each of us perfectly.

Monday, October 22, 2012

A Parent's Perspective

Time to give you a break from me.  My story began 32 years ago.  Here's how my dad tells it.  I'm breaking it into several posts, but here's the beginning of the story. I thought it would be especially appropriate, as I approach Activation Day on Wednesday, to start with the first time that I heard a sound. I wonder if my reaction will be similar. 


First, a bit of background. Rebecca’s hearing loss was not formally diagnosed until she was about 13 months old. We had noticed that she did not always respond as expected as an infant. For example, I remember standing in her bedroom doorway and talking to her without her apparent notice until I walked up to the crib so that I was in her field of vision. (If she had been a teenager, I would have thought that this was completely normal.) Then she would kick her legs and almost quake in excitement. (That would certainly have been abnormal for a teenager.)

One night I thought that I would “test” her hearing by clapping while she was sitting on the floor with her back to me. She immediately jumped, so I concluded that she could hear just fine, but was just an unusually serene child. Later, after her hearing loss had been confirmed, it occurred to me that she had not “heard” the clap as much as she “felt” the concussion of it.
Her pediatrician had not seemed particularly alarmed by our concerns about her hearing. I think that he dismissed our anecdotal evidence as typical of new parents of a first child. (Incidentally, this is why I often refer to Rebecca as “my firstborn in the wilderness of my affliction”: we lived in Corpus Christi when she was born. Anyone who has lived there would understand.)

Anyway, we moved to New Braunfels and got a new pediatrician. Testing infants’ hearing must have been a new technology in those days, not a routine procedure as it is today. It must have been the new pediatrician, Dr. Frank Hampel, who encouraged us to take her for testing, which was done at Texas State University (then SWTSU). We were expecting to hear that she needed to have tubes inserted in her ears for drainage and that they would solve the problem.
I think that we handled the diagnosis of “profound hearing loss in both ears” pretty calmly. Looking back, though, I cannot understand why we would have been so calm. We must not have understood all the implications for her – and for us.
I don’t know who it was that recommended that we take her to the Sunshine Cottage in San Antonio for evaluation and therapy, but it was a God-send. The faculty there recommended to us that we follow the philosophy of making use of whatever hearing she had, assisted by hearing aids, and teaching her to hear and talk without resorting to sign language. I know that this is a highly charged controversy among the hearing-impaired. But for Rebecca it has been a blessing.
In those days technology was such that the hearing aids best suited for her were small rectangular boxes about the size of a package of cigarettes. She would need to wear them at chest level, with the aids connected to ear-pieces in both ears by thin wires. Her mother was supposed to sew several elastic “halters” with tight loops in them to hold the hearing aids securely. Yes, this made them very conspicuous, and we worried that she might reject them as being “unfashionable” even at that tender age. I told my wife, “We’ll just tell her that it is a training bra and she won’t mind at all.” We have very few pictures of Rebecca wearing the halters, but she was as cute as a bug in them.
I well remember the day that her hearing aids were installed for the first time. The therapist, Dan, at Sunshine Cottage had “warned” us that the experience could be traumatic for her, since it would be the first time for her to ever hear any sound. He was very gentle. Rebecca sat in my lap while he inserted the hearing aids into the halters, and then inserted the ear pieces into her ears. He was sensitive to any reaction on her part that would indicate that she was uncomfortable or upset at any stage. Then he turned on one of the aids. We waited in eager anticipation to see what miracle was about to unfold before our very eyes.
She promptly fell asleep in my arms.
More to come from my dad soon.  And just to give you an idea about the difficult decisions that parents make for a deaf child, here's a great blog post from the New York Times that ran last year.

Sunday, October 21, 2012

Why Now? Part Two

At my first appointment with Dr. Slater, he looked over all the hearing tests, scans, case notes, and everything in my file, and asked me, "You've obviously been a candidate for a cochlear implant for a long time. Why now?"*

In early 2011, it became clear to me that my trusty hearing aids were starting to give out.  I'd purchased them in 2005, right after I started working full-time, and they'd served me pretty well.  But 6 years is a tremendous lifespan for hearing aids, and the technology has advanced and improved considerably over that time.  I was lucky to have gotten as much mileage out of them as I did.  I'd had little luck finding an audiologist in Austin that I was comfortable with, so Mom looked around in New Braunfels and made me an appointment with Estes Audiology.  She might've picked them because there was a coupon in the paper.  But whatever the reason, it turned out to be an inspired decision because the people I met there made all the difference.

My first appointment was with Phallon Doss, one of the audiologists working there.  I was a little nervous going into my appointment because I didn't know what to expect.  I just wanted someone to fix my hearing aids, or in the worst case scenario, help me find something better without taking my money and running.  (Because my hearing loss is so severe, fitting me for a hearing aid is an ordeal, and I'd yet to find someone who could reliably work with me over the course of weeks and months to customize my hearing aids to me.)  Phallon put me at ease immediately, listened as I explained what was going on with my old hearing aids, and talked to me about why getting new hearing aids was probably the best course of action.  So, shortly thereafter I ordered some fancy new hearing aids, powerful top of the line Phonak aids, complete with a remote and Bluetooth receiver! 

Because my new hearing aids were so much more powerful than my old ones, it took several visits over the next weeks and months to fine-tune the settings to where I was comfortable with them.  And after I had gotten used to them, I was still frustrated that my hearing seemed to be about the same.  I still couldn't hear in the car or other noisy settings, and speech was only a little bit more intelligible.  I had reached the limit of what modern hearing aid technology could do for my level of hearing loss. Perhaps this was just my lot in life.

At one of the visits with Phallon, I noticed that she had some brochures in her office about cochlear implants.  I was curious, so I asked if I could take one home with me. She also shared her professional opinion that a cochlear implant would be the next step for me, given the level of loss. She also talked about why I would be a good candidate: I've worn hearing aids my whole life so there are some key neural networks for hearing, and I've spent a lifetime working to improve my speech. In essence, I've already overcome two of the major obstacles that many cochlear implant patients face: learning to hear for the first time and learning to speak, both of which things are increasingly difficult to do after the critical language development periods of infancy and early childhood. 

It took me a few days to get up the nerve to look through all the materials because I wasn't sure what my reaction would be.  The brochures were geared towards pediatric patients and filled with story after story of children and parents whose lives were changed for the better because the child got a cochlear implant.  It sounded miraculous and hopeful.

As I read through everything, I began to weep.  I wept because when I was a child, my parents did not have the luxury of cochlear implant technology and so they had to chart an alternate course for me to find my way in the world of hearing. I wept at the thought of living in a time when such technology could touch the lives of so many hearing impaired people.  I wept because it sounded like maybe there was another option for me, beyond hearing aids.  Clearly, there was something to this cochlear implant business after all, and I wanted to find out more.

Two weeks later, I found out that I was pregnant with Molly, and everything was shelved.  Cochlear implants were in the back of my mind, but I had more pressing matters to attend to.

In April 2012, my family was listening to General Conference. (As members of the Church of Jesus Christ of Latter-Day Saints, we participate in General Conference twice a year.  It's a two-day meeting in Salt Lake City, Utah, with talks from church leaders on a variety of topics relevant to faith and family. The proceedings are broadcast over the Internet, for convenience and a broader distribution of the messages.) Elder Russell M. Nelson gave a talk called "Thanks Be to God."  His comments about the majesty of the human body, the completeness of its functions, and the miracle of the resurrection touched me deeply.  I especially appreciated this remark:
Be we reminded that a perfect body is not required to achieve one’s divine destiny. In fact, some of the sweetest spirits are housed in frail or imperfect bodies. Great spiritual strength is often developed by people with physical challenges, precisely because they are so challenged.
At the end of his talk, the thought came into my mind very clearly: "It's time for a cochlear implant."  I even wrote that down because it was such a distinct impression.

From there, everything fell into place quickly.  Through Soriya Estes, the founder of Estes Audiology, I was introduced to the team at Austin Ear Clinic.  I met Amy Gensler for the first time at an event sponsored by Cochlear Americas, and from there, the evaluation process started.  Now that I look back at how events have unfolded, I am amazed that it all came together so tidily.  I was able to get appointments sooner rather than later, paperwork was processed quickly, and help always came when I needed it.  The time was finally right.

*So, the answer I gave in the doctor's office was "Because no one has ever made a compelling case for one before." And he was satisfied with that.

Saturday, October 20, 2012

Why Now? Part One

At my first appointment with Dr. Slater, he looked over all the hearing tests, scans, case notes, and everything in my file, and asked me, "You've obviously been a candidate for a cochlear implant for a long time. Why now?" 

Here's part of the answer, and I dare say, my main motivation.


These two girls are the reason why. I want my children to be able to play at the park without being tethered to my side because I can't hear them calling me. I want to talk to my children in the car to learn how pre-school was that day and who bonked heads with whom and what kind of snack they had. I want to talk to my children without having them repeat themselves, especially after a story has taken considerable effort to tell in the first place. I want to hear the crash that warns of a playtime disaster. I want my children to know that I am listening, always listening, and that their words are so important to me. I want to hear my baby crying in her room upstairs. I want to be able to sing happy songs with my girls. I want to be comfortable taking the phone call from school telling me that my child is sick and needs to be picked up. I want to be able to watch silly movies and cartoons and puppet shows.  I want my children to know that they are safe with me and that I can take care of them. I want to hear all the funny little things that they say when they are playing together. I want to my children to enjoy all the happy things a childhood has to offer, without being held back by their mother's limitations.

Thursday, October 18, 2012

Post-Op Appointment

This afternoon at 2, William and I went to my post-op check-up at Austin Ear Clinic.  My appointment was with Andrew, the physician's assistant, so I didn't get a chance to give Dr. Slater a hard time about how lousy I've been feeling.  The nurse took us back to an exam room, and I saw Andrew working on some paperwork as we walked back.  He must have seen us walk by because he stuck his head in and said something to William about my being dizzy and then told the nurse to move us to an exam room with a table. 

While we were waiting in that exam room, William told me what Andrew said. "I don't mean to pry, but are you holding her hand because she's dizzy?"  Interesting question.  I guess that William and I don't give off the newlywed vibe anymore.  I think it would've been funny if William had gone out of character and said, "No, good sir, I hold her hand because she is the love of my life!"  Ha.

So, we waited in the exam room with the table.  The nurse had brought up my file on the computer and then left it open, so William went to see what was there.  She'd pulled up Dr. Slater's write-up about my surgery, and William said, "I think I'd like to read this report."  (So, when we left, I got a copy of that report. It is a marvel of medical lingo, but I think it says that my surgery went well.) We waited and waited.  William even played with their computer a little, long enough to figure out that the mouse battery was running low.

Finally, Andrew came in and started checking me out.  He looked into both of my ears.  My left ear has a hearing aid in it, so I light-heartedly told him that he wouldn't be able to see much.  He didn't really think that was funny.  (By the way, this happens so often. When I go to a doctor's office for ear trouble, they NEVER tell me to take my hearing aids out. They just start looking and then seem surprised to see hearing aids in the way. It never fails. Sounds to me like someone didn't read my chart before coming in.)  So, he looked at my ears and then at my incision.  No problems there. 

Then he started checking the dizziness.  He asked a few questions about what kind of dizziness I'm having, spinning versus rocking motion.  He had me lie down on the table while he cradled my head in his hands.  He started turning my head slowly in several directions, which was supposed to help with the dizziness.  He was talking to William about what he was doing, but I cannot read lips upside down and couldn't tell what he was saying.  He worked with me for a few more minutes and then finally sat me up.  Boy, my neck was getting tired.

Turns out I have benign paroxysmal positional vertigo.  Here's what I understood from his explanation.  There are some crystals that normally are suspended in fluid inside the cochlea.  During the surgery, some of the fluid and crystals flowed into other bones of my inner ear, which causes the vertigo.  The head rotations that he was doing were supposed to help shift the crystals and fluid back where they belong.  So, crystals in my head. Cool, huh?  (Actually, I was having a hard time following him and started thinking about The Dark Crystal and what a terrible movie that was.)  He gave us a really long handout with a much more technical explanation about the vertigo and possible treatments and then told me that I should not bend over or tip my head backwards too far for a few more weeks.  When sleeping, I should sleep with two pillows to keep my head propped up. He actually said that sleeping a recliner is ideal. (Obviously, he's never slept in a recliner.)  In theory, all this is doable, but in reality, I have two small children and a house to keep up with.  We'll see how well that goes.

I'm supposed to go back in a week for another vertigo check and possibly some more head rotations. I can hardly wait.

And while we were driving to and from the appointment, the first time I've been in a car since my surgery, I noticed that I get dizzy and slightly nauseated.  So, it looks like I won't be getting behind the wheel for a while.

Day 0: William's Perspective

William here, letting you know about my experience the day Rebecca received her implant.

Before we left the house that morning, I was looking for a book to read. I knew I was going to spend some time waiting. I wanted to read my Book Club book for October, but it was not available at the library yet. So I took a look at our bookshelf where we keep all the library books we have checked out -- all the books that are not for Emily, at least -- and settled on Malcolm Gladwell's The Tipping Point: How Little Things Can Make a Big Difference.

Even though the title of the book is referring to something completely unrelated, I can't help but call attention to the fact that a cochlear implant is a little thing that can make a big difference.

While Rebecca and I were waiting before going in to pre-op, I told her that I would have brought my computer instead of a book had I known there was free WiFi at the hospital.

We were both in high spirits. We were confident that everything would go according to plan. There was no doubt in our minds. We were doing the right thing.

A nurse appeared and marched us back to the pre-op area. It's a good thing we're married because I was there while Rebecca changed into the hospital gown. Rebecca asked me to take plenty of pictures and I promised not to accidentally post any on the Internet.

Rebecca mentioned I was telling stories about when I was a Boy Scout, but I don't recall what prompted those. Eventually the nurses came to roll Rebecca away so I gave her one more kiss and found my way back to the lobby.

For about an hour and a half I divided my time between reading The Tipping Point, snacking on peanut M&M's Rebecca's mother kindly gave me, and trying not to be distracted by Food Network on the big screen on the other side of the lobby.

After he completed the surgery, Dr. Slater came to the lobby to tell me about how it went. Contrary to what Rebecca wrote earlier, I think Dr. Slater told me that Rebecca's cochlear malformation actually put her at less risk for dizziness. Other than that, it was a textbook procedure skillfully performed by an experienced surgeon.

Dr. Slater told me I had to wait a little longer and a nurse would come get me when Rebecca woke up. I used that time to report the good news on Facebook. That was the moment when I started to feel emotional about this whole thing. This was when I really accepted the fact that our lives just changed dramatically. This was my tipping point.

People who know me know that I rarely express strong emotion outwardly. Joy, sadness, surprise, anger, excitement -- I show these emotions very rarely. But after I learned that Rebecca's surgery went well, I was definitely feeling a mixture of emotion. There was joy that the procedure went well, but sadness at what I knew was going to be a slow and probably frustrating recovery while Rebecca learns to hear with the implant. There was some fear of not really knowing what the next few days and months would hold.

But mostly I was happy, and proud of Rebecca for having the courage to take a step into the silence so she can eventually hear better.

Dr. Slater told me a nurse would come get me in about thirty minutes when Rebecca started to wake up, so I waited some more. I eventually got to go back to see Rebecca. The hospital staff wasted no time in giving us instructions and shuffling us out to the car and on our way home. The drive home was quiet while I'm sure Rebecca focused all her attention on not honking in my car.

We got home and got Rebecca in bed and I think I spent most of the rest of the day camped out in our bedroom with my computer, telecommuting and waiting for Rebecca to wake up and ask me for anything.

Recovery

So, the recovery pretty much stinks.  There's no way to sugar coat this.  I'm writing this post a week after surgery, and I can't say that I feel significantly better than I did a week ago.  A little bit, yes, but I'm definitely not up to my normal routine. Recovery is slow and painful and wearing on everyone's patience, especially mine. Yes, this is going to be kind of a gripe-y post, so feel free to stop here.  For the sake of an accurate historical record, I'm going to keep writing about how this feels.
 
I've got terrible vertigo and some mild nausea.  I've constantly got the feeling that I'm about to faint, where I get very hot and light-headed and my arms suddenly weigh 150 pounds.  My right ear hurts a lot on the inside, and on the outside, my ear lobe is completely numb. I can't even wiggle my right ear, so there goes my one talent show-worthy trick. The right side of my tongue is numb, so I can't taste or feel anything on that side of my mouth.  Last week, I ate a cupcake, and it felt a lot like eating a mouthful of Crisco, because I couldn't taste it.  I spend a whole lot of time in bed, lying down, sleeping or trying to sleep.  I've been trying Zofran for nausea and hydrocodone for pain.  They're somewhat helpful but they mostly make me sleepy. And my ear still hurts.  I can only sleep on my left side, so my neck is stiff.  I'm only wearing a hearing aid in my left ear, and there's not a whole lot that I can hear. Everything sounds pretty muddled and echo-y.

As for my appearance... Oh, dear.  First off, I wasn't able to wash my hair for five days after the surgery.  No amount of dry shampoo could save that look.  Bleh.  When Monday's shower came around, I was so excited to finally wash my hair.  But taking the shower made me so dizzy that I had to spend the rest of the morning in bed.  I have a bruise under my right eye from some of the surgical monitoring equipment, and my neck has bruising on the right side.  Because my mouth is numb, my right lips are drooping ever so slightly.  I've been lounging around in pajamas because that's the path of least resistance for me.  When I walk, I feel like I'm listing slightly to the right and I've perfected the shuffle/stagger walk of someone afflicted with vertigo.

So, are you imagining what this looks like?  I'll tell you. I look like I'm hung over.  Well, having never actually been drunk, I'm guessing.  But I don't think I'm too far off.  A few days ago, I was feeling steady enough to attempt a walk to our mailbox around the corner.  Of course, as we were shuffling along, we happened to bump into our new neighbors that we haven't met yet.  What a great first impression.  I had sunglasses on, even though it wasn't terribly bright outside.  I have bruises on my right side. I was clinging onto William's arm for dear life and shuffling away painfully slowly.  When they talked to me, I had to squint and try to listen extra hard because I can only hear out of my left ear, which isn't much. I think I asked them to repeat a few things, which tends to knock off a few IQ points.  OK, so maybe that part of it is kind of funny.

One other thing that is weird. A few days after surgery, I was reading a story to Emily. I didn't have my hearing aid in my left ear, for some reason.  Normally, at least pre-surgery, when I didn't have hearing aids on, I could still hear/feel myself talking in my right ear.  It was more of a vibration than a sound, but I could tell that something was there.  When I was reading the story to Emily, I couldn't hear or feel a thing. That's when it hit me that my right ear's natural hearing is completely gone.  And in its place is an implant, a man-made marvel that's supposed to make all of this misery and discomfort worthwhile.

Wednesday, October 17, 2012

Surgery, Part 2

Someone is patting my hands. I open my eyes with some effort and see a blond nurse smiling at me with some concern.  She doesn't look like Jesus so I figure that I've pulled through the surgery just fine.  She asks how I'm feeling.  Very polite, right?  I tell her that I'm feeling dizzy, slurring my words badly.  The room is spinning, and I'm having some trouble focusing my eyes.  She pops something into my mouth and says that it should help with the dizziness.  At this point, I just want to go back to sleep, so I close my eyes for a few more minutes. 

I open my eyes again, and the spinning continues.  I also notice that my arms feel really heavy and shaky.  The nurse asks if I want a saltine. Since I haven't eaten anything since the night before, I agree.  Trying to put the cracker in my mouth requires some effort, and chewing is painful.  After two bites, I put the cracker down.  Too hard to eat right now.  I close my eyes again.  Also, my right ear hurts.

After what feels like a few more minutes, the nurse rouses me again and says it's time to get dressed.  The dizziness pill has actually helped, and the spinning isn't as bad. She starts pulling my clothes out of a plastic bag, and I wonder how I'm going to get these clothes back on.  She's evidently done this before because getting me dressed goes pretty smoothly.  I don't put forth much effort other than to lift an arm or leg when she says to. I lie back down on the bed, glad that I haven't had to try to button or zip anything. This is one of those rare times when stretchy knit pants are more than OK.

Then she says, "I'm going to get your husband and then we'll get you ready to go home."  Finally, I can see William again.  It seems only a few seconds before he comes bounding in, smiling hesitantly with the unspoken question of how I'm feeling.  I see concern and relief in his eyes, and he looks happy to see me. I'm happy to see him, too.  But every part of my body weighs about 100 pounds, and moving requires too much effort, so I give him my best effort at a small smile.  The nurse starts talking to him about getting me home.  I start to feel nauseated, but it passes as soon as I close my eyes.  I have the presence of mind to ask for a barf bag for the car ride home, just in case.

After a few more minutes of lying perfectly still with my eyes shut and not making a sound, I'm roused once again by the nurse who has procured a wheelchair.  Time to get up.  Getting into the wheelchair isn't as difficult as I'd expected, and William, as is so often his lot in life, ends up carrying my purse as we work our way out of the post-op recovery room and into the hallway.  I'm wheeled through the same lobby where we'd waited in the morning and notice just how small this hospital is.  William runs to get the car, parked maybe 50 yards from the entrance.  I tell the nurse that she forgot my barf bag.  She looks at William bringing the car up and decides to run inside to grab one for me. It's not like I'm going to make a getaway in the wheelchair.  She comes back with the barf bag, just as William pulls the car up.  The two of them help me get into the front seat.  I close my eyes once again, and William drives away.  I don't say a word on the drive home.  It requires too much effort.

Finally, we're home.  I imagine that Mom and the girls are waiting expectantly to see me.  William helps me get out of the car and navigate my way through our garage and laundry room into the house.  Everyone is waiting there for me.  I smile a little and tell Emily that I brought her a barf bag from the hospital (unused, of course.)  Then I say that I need to sleep, so we head upstairs and I collapse on my bed.  I'll find out what the surgeon told William about surgery later. 

Tuesday, October 16, 2012

Evaluation Process

[I'm going to jump backwards in time here.  Lest you worry that I don't come out of the surgery OK, let me remind you that I have indeed lived to tell the tale.  So, there will be more posts about surgery and recovery, including one from William. His side of the story is pretty important, too.]

The evaluation process for a cochlear implant is fairly involved.  Because an implant is so expensive, insurance companies want to make sure that their money won't be wasted on someone who will not benefit from the implant. The question to answer is, "Are you deaf enough to benefit from the implant, or can you get by with just a hearing aid?"  Perhaps there's a more scientific way to put it, but that's the gist.

There were three parts to the evaluation, and we started in June 2012.  The first step was simple enough, a hearing test with my audiologist Amy Gensler. Because they're trying to determine whether a patient will continue to derive benefit from a hearing aid, the hearing tests are done with the hearing aids on to see how well the patient performs. 

Amy tested my right ear first, then my left ear.  The test had two parts: one involved listening to tones and indicating when I could hear the tone by pushing a button, and the other had me repeat sentences that were played.  The tones were used to plot my audiogram, to show the range of pitches and volumes that I could hear.  The sentences were played from a recording of several different people, men and women, saying stuff.  It was played from a recording to determine how well I could hear without any external cues, like context, social setting, or lip reading.  The sentences were played up to two times, and I had to repeat back whatever I understood.  Even if it wasn't the whole sentence, I could repeat any words or phrases that I heard.  There were 20 sentences altogether. 

With my right ear, Amy played all 20 sentences, and I had 25% intelligibility rate.  With my left ear, Amy played the first 10 sentences and when it became clear that I couldn't understand any of them, she ended the test.  At best, I could tell whether it was a man or woman speaking, but nothing came close to being intelligible. No surprises there. The minimum criteria is 50% comprehension, so I came well below the standard.  Amy also spent some time during that appointment showing us the implant equipment and explaining more about the surgery. William had a great time playing with all of the equipment, probably because there were all kinds of buttons and cables to look at.

After determining that I was indeed deaf enough, Dr. Slater's office ordered more medical testing to determine whether my ears' anatomy would accommodate an implant.  That required a CT scan to look at the cochlear anatomy and an MRI to look at my auditory nerve.  Those scans happened at a radiology clinic here in Austin, a few weeks after my initial appointment with Amy. The clinic would do the scans and send them to Dr. Slater for evaluation, so I didn't learn anything from doing those tests.  Doing an MRI is kind of like being buried alive except way noisier. Claustrophobia at its worst. I hope I never have to do that again!

I had my first appointment with Dr. Slater after these two tests. Up until this point, I'd been under the impression that we would play it safe by implanting my left ear first, so that if the implant didn't work, I would still have my hearing in my right ear to go by.  Dr. Slater indicated otherwise.  Because my right ear had been my dominant ear for so long and the neural pathways to my brain were far more developed, my right ear would adapt much more quickly to an implant than my left ear.  In a best case scenario, my right ear could be at a 75-90% comprehension within 4-6 weeks of implantation, while my left ear could take up to a year to be truly proficient at recognizing sounds and turning them into something meaningful. That's quite a steep learning curve. The next question was whether to do one implant, to implant both ears simultaneously, or to implant one ear and then the other at a later time. Dr. Slater's opinion, which I was inclined to trust, was that the best approach would be to implant my right ear first, get it up and running, and then to implant the left ear later.

My cochleas are malformed, which put me at a higher risk for dizziness after an implant.  So, Dr. Slater ordered vestibular testing to see what kind of side effects to anticipate post implant.  Vestibular testing was done in his office and basically consisted of me sitting in a La-Z-Boy with a bunch of electrodes attached to my head.  I also had to look at a bunch of bright lights while an audiologist watched how my eyes tracked them.  The last part of the test involved blowing air into my ear and seeing how dizzy it made me.  It sounds way worse than it was, and I didn't have any problems driving myself home after the test.  

After all this, Amy put together the paperwork for insurance approval.  All of this testing and documentation was sent to my insurance company where a medical director there would have the final say on whether implants would be approved.  On September 14, 2012, we received a letter that indicated that I'd been approved for implants in both ears. I didn't anticipate any problems with the approval because my hearing is just so poor, but it was nice to have confirmation at last. 

Surgery, Part 1

Wednesday, October 10, 2012. 10-10-12. I slept pretty well on Tuesday night, all things considered.  We were up at the usual time.  William was ready first, but that's because I was taking my sweet time washing my hair. I wanted it to count, since I wouldn't be able to wash my hair for several days. I put on the comfiest clothes I could find and regretted just a little bit that I couldn't even put on a teeny bit of mascara. Surgery is hard enough without looking like a zombie. There are good reasons for asking patients not to wear makeup, but this girl likes to look nice.  Also, no food or drink after midnight on Tuesday.  So, I was kind of hungry.

We needed to be at the Hospital at Westlake Medical Center by 8. We left just after 7. I had to wake Mom up to say goodbye. The girls were still sleeping, and that was probably for the best. There might have been a lot of crying if I'd had to see them before we left.  The traffic was bad because of rush hour, compounded by fog and drizzle.  To pass the time, William listened to NPR, and I read The Woman in White. It could be the last time for a while that I'd be able to read in the car without getting motion sick.

We were both surprised when we pulled up to Westlake Medical Center. It appeared to be a large compound of medical offices, with no obvious hospital building.  After driving around for a few minutes, we noticed that one of the offices had an "Admissions" sign over the entrance.  But it didn't look much like a hospital.  William snagged a parking spot right in front and we headed in to check it out.

We found it!  It was definitely the smallest hospital that I've ever been in, but also one of the more posh.  Thank you, rich Westlake neighbors, for demanding nothing but the best.  I should mention that this hospital is one of two in the city that will do cochlear implant surgery, so hopefully that explains why we drove by at least four other hospitals on the way there.  Check in was no big deal. $100 co-pay and a signature on a release form.  They asked if I had a DNR and/or living will; I don't. But I didn't think that either of those documents would be needed for this surgery. I'll put it on my list of things to get sorted out soon.

Then we went to the lobby to wait.  There were several other people there waiting for their loved ones to come out of surgery.  We saw Dr. Slater, my surgeon, come out to talk to a woman who was waiting.  He must have been reporting on how the surgery went. I'd hoped that William would eavesdrop on their conversation, but he said that it wasn't very polite. Psssh. When my implant is connected, I plan to do a lot more eavesdropping! Maybe I'll find out that conversations are not as interesting as I imagine them to be.

Soon, we were escorted back to the pre-op room where I changed into a purple gown, purple socks, and hospital-issue underwear.  Ooh la la. We were joking about the socks being a $65,000 pair of socks, a la "My wife got a cochlear implant, and all I got was this lousy pair of socks."  We were in pre-op for at least an hour, with various staff coming to check on us. A nurse got me hooked up to an IV, which hurt a lot more than I remember it hurting with my babies. Turns out that she'd gotten a bad batch of needles from the manufacturers, and everyone had been complaining about their IV's.  Glad to know I'm not a pansy. The anesthesiologist came by to put a Scop patch behind my left ear and talk about the medications I would be receiving during surgery. Nice guy. I wish he'd been on call when Emily was born. His name was Larry, so we talked about how the name "Larry" seems to have this one decade around the 1940's and 1950's where it was extremely popular and then no one ever named their son Larry again.  William told a lot of stories about Boy Scouts. I'm sure we were driving everyone around us nuts with our chatting and laughing, but too bad!

Just their way of making absolutely certain that my right ear was being implanted.

Finally, the nurse came to take me back to the OR.  He put a relaxer into my IV. I kissed William and said, "I love you."  The last thing I remember is saying, "Wow, I can feel that relaxer kicking in."

I think this picture is so funny because I look way too happy. This was even before they got the relaxer drugs going!

Monday, October 15, 2012

Cochlear Implant Info

Here's a handy little write up about cochlear implants. I figure that it's trustworthy because this is where my friend Janae went to medical school.

If you read the whole article, you'll find a few things that are different from my experience.  My surgeon used a minimally invasive technique, which left only a 1.5 inch scar behind my right ear and did not require any shaving of the skull bones. Ouch, right?  Also, my implant will be activated two weeks after surgery (not a month), so I'll be hitting the ground running. Because I'm an adult patient, I did not have to meet with a social worker or a psychologist, which I would imagine is more routine with school-age children who need more support with the transition.

A couple of things about me that I should mention here. I was born deaf and fitted with hearing aids just after I turned 1. Through a series of happy circumstances, I was raised in an oral environment, meaning no American Sign Language exposure.  (Maybe I can get my parents to do a guest post about that because that is really their story, not mine.) So, the fact that I quickly tapped into what little hearing I had left and because I was raised oral, the transition to a cochlear implant should be smoother for me, than it would be for someone who has never worn hearing aids and who has never learned how to speak. At least, that's the theory. We'll find out next week if that's really true.

The Day Before

On Tuesday, William went to work, and I stayed home with the girls. Emily sounded terrible, with lots of sneezing and a scratchy voice. I decided to keep her home from preschool, even though I suspected that she was suffering from allergies.  Molly also refused to take her naps, so it could've been a very long, frustrating day.

But I quickly realized that this was a tender mercy from the Lord, to have one more day with my girls where everything was just as it should be. I could be a mom and cuddle them and hold them and feed them and play with them and clean up after them. Since no one knew how my recovery from the implant surgery would go, I realized that it might be a while before I could go back to being a mom and do all the things that moms do.  Emily and I headed to the kitchen and made rolls and pumpkin bread.  Molly scooted around on the floor, happily for the most part.  It was a totally normal day in many regards.  As much as I complain about the monotony and routine of normal days, this was a normal day that I was most thankful to have.

Mom showed up in the middle of the afternoon, and Emily just about jumped into her arms. She was so excited to have Grandma stay with us for a few days. She was especially proud to tell Grandma that she'd helped to clean the upstairs bathroom so that she and Grandma could share it.  (Her favorite part was cleaning the toilet!)  The weather was beautiful, so we girls went outside to play in the backyard.  Molly was on the picnic blanket with me, and Mom and Emily played in the playscape.  I made a giant pot of mediocre soup for dinner (I had not intended for it to be mediocre, but sometimes that's how it goes in the kitchen.)  We got the girls off to bed, and as I kissed them good night, I thought, "Everything will be different tomorrow. Remember this moment."

And as luck would have it, at 8:00 that evening, I had a phone interview for a part-time editing job. (Because who wouldn't try to find a job in the midst of life-changing surgery?) William was my transcriptionist, and we were the phone for almost an hour.  One of the things that I hope comes from the implant is that talking on the phone will not be so difficult. 

I wrote down in my journal, "Today was such a normal day. How can tomorrow be the day that changes my life?"  It was a surreal feeling, one that I had the day before I was married and on the day before my babies were born. It was the same feeling I had driving home from my mother-in-law's funeral. There are all of these people out there in the world having a totally normal day, and there are some people whose lives are about to change forever.  Usually, I'm the person having a normal day, while someone else's life has changed in an instant. But on Wednesday, I would be the one watching everyone around me having a normal day and thinking, "Did anyone else notice that the world just changed a whole lot?"  But life still goes on, one way or another.

Sunday, October 14, 2012

Pre-Op Appointment

On Monday, October 8, I had my pre-op appointment with my doctor, Dr. Slater. When I checked in, the receptionist handed me a four-page document to look over and sign. The first two pages listed all the things that could possibly go wrong with surgery, the third page described how I should take care of myself after surgery, and the last page was a consent form to indicate that yes, I understood the risks of surgery. I also had to fill in the blank on the signature page: "I want Dr. Slater to operate on my _____ ear." This would be the first of many times that I had to confirm that my right ear was to be implanted.

Here are the things that were listed on the first two pages of the document:
  • Hearing loss: Since the hearing in my right ear is comparatively better than my left ear, so putting an implant in my right ear was fairly risky.  In the unlikely event that something went wrong, I would be worse off than I was before the implant.
  • Dizziness: The implant goes through the vestibular system and causes a pretty big disruption. For the first time in my life, I would have vertigo.
  • Taste Disturbances: The surgery can damage the nerve that supplies taste.
  • Ringing: Tinnitus is pretty common and understandably so. I'd never had a problem with it before.
  • Facial Nerve Paralysis: Same idea as taste disturbances. Some of the nerves controlling the face could be pushed aside since they run through the middle ear.
  • Perforation of the ear drum: Ouch.
  • Infection and Meningitis: Scary, but good thing I got a meningitis vaccine last week.
  • Cerebral Spinal Fluid Leak: My cochleas have a Mondini malformation, meaning that the bones do not have the full number of turns. Cochleas look like snails, at least normal ones do, and they have at least 2 full turns. Mine have 1-1/4 turns. This would put me at a higher risk of spinal fluid leak, hence the need for the meningitis vaccine.
Post-surgery things to remember:
  • No hair-washing for 3-5 days after surgery
  • Resume a normal diet on the day after surgery
  • Do not blow your nose for one week (this seemed to be maybe the most unhelpful thing ever. We are in the middle of fall allergy season here in Austin!)
  • Do not bend over after surgery.
  • No physical activity for one week, regardless of how you're feeling, and no lifting more than 20 pounds (sorry, Emily and Molly.)
  • Do not exercise or play sports for three weeks after surgery
  • Do not swim or fly until the doctor says it's OK
 I read through all of these worst-case scenarios and instructions then signed the consent form. No need to fear.  Of all the emotions associated with impending surgery, fear was never one of them. However, I wasn't sure whether this would be something to show my mother. Ha.

The appointment itself started out with Dr. Slater's PA, who asked me if I'd signed the consent form (I had) and handed me a prescription for Zofran and Norco. I had to ask what they were for.  (Nausea and pain.) He also told me that the hospital would call with instructions for surgery. Because the surgery would be at a hospital in a part of town that I don't know, I asked if they had maps to the hospital; they didn't. I guess that's what Google Maps is for.

Dr. Slater came in next and looked at my ears with his otoscope. I'm not sure what he was looking for since everything affected by a cochlear implant is hiding behind the ear drum.  I teased him about the scary side effects hand out and told him to "Please be careful."  He smiled sheepishly and said, "I've never hurt anyone yet."  And that was about it.  Cleared for a cochlear implant on Wednesday.

Saturday, October 13, 2012

Introduction

I have a story to tell. It's a story about me and my disability. Well, some people might call it a disability, and I probably did when I was younger. But now, I think of it more as a challenge to keep me humble in the midst of many other blessings and talents. I was born with severe to profound hearing loss in my right ear and a profound loss in my left ear. I've worn hearing aids my whole life. Big, powerful, conspicuous hearing aids that somehow manage to wring out every last bit of hearing that I had. In April 2011, I bought new hearing aids for the last time. On October 10, 2012, a surgeon put a cochlear implant into my right ear, and if all goes well, I will have another implant put into my left ear sometime in 2013.

There's a Primary children's song called "I Know Heavenly Father Loves Me."  The second verse has had special meaning for me.
He gave me my eyes that I might see the color of butterfly wings.
He gave me my ears that I might hear the magical sound of things.
He gave me my life, my mind, my heart. I thank Him reverently
For all his creations of which I'm a part. 
Yes, I know Heavenly Father loves me.
I decided that would be an appropriate title for this blog because I look forward to hearing the magical sounds of so many more things than I ever have before.

Like I said, I have a story to tell. I don't know how this story will end, or when. But I want to tell it as it unfolds. The date on this post is October 13, 2012, which means that chronologically, I'm in the middle of my story. The blog posts may be somewhat chronological, or I may exercise artistic license and throw in some background material for some of my posts. But the story will largely focus on my road back to hearing.  Sometimes I'll have William weigh in with his side of the story, because this part of the story is almost as much his as it is mine.

My hope is that as others read my story, they will come away with a greater appreciation for the tremendous God-given capacity that our bodies have. I hope that they'll understand that living with a disability is challenging, just as living in a body that works pretty well can be challenging, too. I hope that they'll recognize that the road to my recovery continues to be built on a foundation of prayers, fasts, kind words of encouragement, and generous acts of service. And above all, I hope that they'll understand a little more about the Master Healer of us all.