Thursday, December 13, 2012

The New Normal

I think I'm finally settling into the New Normal here.  The two-month mark for my cochlear implant surgery passed quietly on Monday.  When I pointed this out to William, he said, "That seems like it was so long ago." And to me, sometimes it feels like hardly any time has passed, and sometimes I feel like this is how it's always been.  We're back on our regular routine, and I feel like I'm fully functional again.

My physical scars are nearly gone. The only lingering effect from surgery is that my right ear is still numb, meaning that I can't wiggle both ears. There goes my good party trick--you'll have to settle for seeing my left ear wiggle.  The vertigo problems are gone, mercifully.  My sense of taste is almost completely back, except for the taste of some sour foods.

In terms of hearing, I feel like I am mostly back to where I was with hearing aids.  Voices are intelligible (no more bells and tones!) but I'm still not very good at participating in group conversations. (I tested this theory out at a baby shower last week, and I was pretty much lost trying to keep up with everyone. Why do women all have to talk at the same time?)  Voices sound different, though, deeper and richer. It's like everyone's voice was turned down about five notes.

One thing that makes me a little sad is that music is just a mess right now. I can't hear the difference between, say, Middle C and an octave higher or lower than that.  Everything sounds very monotone. In church a few weeks ago, the kids were learning a new Christmas song. The music leader asked them, "Can you hear that part where it gets very high at the end of the line?" I couldn't tell, and after she pointed that out, I tried to listen and still couldn't hear the difference in the notes. So, if you have the opportunity of sitting next to me during church and find yourself wondering what in the world is wrong with my singing, just know that I'm doing the best I can.

At one of my appointments with Amy, she asked me, "What's my goal?" and I didn't have a good answer. Whoops. My goal is to hear. It's a good goal, right? Except that it's not quantifiable and measurable. So, let me try again. I want to be able to have a normal conversation in the car. I want to go to a baby shower and keep up with the conversation. I want to hear the phone ring and not get a knot in my stomach wondering if I should try to answer it. If I could put a deadline on my goals, I would. (But even Amy who has years of experience with cases like mine can't put a timeline on my progress.)  Wouldn't it be nice to know when I'm getting close to the finish line?  Of course!  However, I suspect that my finish line is still in the far distance, so I will keep walking on my road back to hearing.

Today, I read this talk by President Thomas S. Monson, Finding Joy in the Journey. It touched me for several reasons. At the end of the talk, he shares a story about a woman who was born nearly blind. Here's the end of the story and the part that I identify with:
Miraculously, in 1943—when she was over 50 years old—a revolutionary procedure was developed which finally restored to her much of the sight she had been without for so long. A new and exciting world opened up before her. She took great pleasure in the small things most of us take for granted, such as watching a bird in flight, noticing the light reflected in the bubbles of her dishwater, or observing the phases of the moon each night. She closed one of her books with these words: “Dear … Father in heaven, I thank Thee. I thank Thee.”
Like the woman in this story, I'm hearing things that perhaps many take for granted.  For the first time, I'm hearing the beep of the washing machine and dryer when a cycle is finished, the distant roar of airplanes flying over our house, the Salvation Army bell ringer, the little bells on Christmas ornaments, the highest register notes on a piano, and birds chirping outside.  As I'm settling into my New Normal but still trying to figure out what to do with this new ear of mine, I can find joy in the fact that for the first Christmas of my life, I can hear the bells ringing.  The magical sound of things, indeed. 

Sunday, November 25, 2012

More from Dad! (Extra Help from Technology)

I've been digging through my emails to find this.  My dad had more to say, and I want to make sure that he gets to say it!  In this post, he writes about some of the electronic equipment that I used in schools, beyond my hearing aids. 
When Rebecca was in elementary school, the school district recommended that she use an FM system in classes. It consisted of an FM transmitter with a microphone for the teacher to clip on her lapel, and a receiver that Rebecca would wear on her belt and connect directly to her ear-level hearing aids. That would enable her to hear the teacher’s voice even if she (the teacher) were at the board with her back turned to the class or were standing in another part of the classroom. The local Lions club paid the approximately $1,000 cost of the device. I still remember the proposal letter from the school district asking for this contribution to assist a “remarkable little girl”.

One day in first grade Rebecca came home from school and told her mother that Mrs. So-and-So was going to have a baby. “How do you know that?” was the wary question her mom asked her. “Oh, I heard them talking about it in the teachers’ lounge.” Obviously, it is important for the teacher to remember to turn the transmitter OFF, before leaving the classroom.

Because it is difficult to get much out of television if one cannot hear the audio, we purchased a “closed caption” unit to assist Rebecca. This was long before such technology was required to be installed in every television unit. Having a text bar displaying the narrative is a real benefit to those unable to hear the audio. We are sure that having this device also helped Rebecca (and her younger siblings) learn to read better. I’ve always said that if my children ever grew up with an inclination toward spray-painting obscenities on public walls, they would always be able to spell the words correctly, all thanks to network television.

And a few words from me about this.  I pretty much hated wearing the FM system. I had a unit that I wore clipped to my belt, and the teacher had a separate unit, complete with a large microphone that could be clipped onto their shirt.  As far I was concerned, I might has well have been wearing an sequined eye patch that played music. I felt very, very conspicuous wearing it and thought that it screamed "Special Ed!" The good news here is that my friends thought it was awesome because between classes, they would take the teacher's unit and try to talk to me, a la walkie talkies.  Because no kid can resist a microphone, right?

My teachers were always very understanding. Before each school year started, Mom would take me to school to meet my teacher and warn/educate her about how to use it.  The teacher's unit had an on/off button, and my unit had a volume control, as well as on/off. If I had been more mature and less curious, I could have turned my unit off whenever the teacher left the room. Just couldn't resist a good eavesdrop, I suppose. Easily the most embarrassing moment for any of my teachers would be the time that Mrs. Smith (5th grade) forgot to turn her unit off when she went to the restroom. I turned mine off quickly after I realized what was going on, but I couldn't resist telling her when she came back to the classroom.  She was mortified, especially when she realized that I had already gleefully told the entire class what had happened.

Until I read Dad's post, I hadn't realized that the local Lions Club had paid for the FM system. That was not the only time I was the beneficiary of their charity.  But I am grateful. For all the mortification it caused me, the FM system was probably one of the reasons that I did so well in school. I was able to listen to the teacher's instruction, rather than classroom chatter, and wearing it reminded the teacher to give me just a little extra attention. I wore it from elementary school to high school, and it is miraculous that it held up as well as it did.

One of the more inventive uses for the FM system came from my 6th grade band director. He noticed that I was playing my instrument a little flat and thought that clipping the microphone to the bell of my clarinet would help me stay in tune.  So, we tried it out, and my problem was solved.  To this day, I do not know why that helped. I don't remember changing anything else about the way that I played, but somehow, hearing my sound through the FM system kept me in tune.  He was so impressed that he even had me demonstrate to the entire band how my sound had changed.

 Now, closed captioning. It is amazing! Why don't more people use it?  At one of my appointments with Amy, I asked about whether I would be able to watch TV without closed captioning. She thought that with some practice, I would get there. To me, watching TV without closed captioning is the ultimate proof that my implant has worked. (I'm not there yet.)  Anyway, William listened to this little interchange, and after he'd had enough, he piped up, "Uh, I don't think that I want to get rid of closed captioning..." And then we all laughed, because closed captioning is so helpful! (Have any of you ever tried to watch something dialogue-intense like Sherlock or The Social Network without captioning? How did you keep up with it?)

Just over a year ago, the movie theater closest to us started using in-seat captioning devices.  I've used this device twice, with The Help and The Hunger Games, and boy, has it revolutionized my movie-watching experience.  The first time I used the device, I couldn't help but think just how far accessibility for hearing-impaired people has come. I was, and continue to be, grateful to live in a time when such help is available.

Thursday, November 22, 2012

Gratitude

Of late, my prayers are mostly filled with gratitude and thanks. It's a funny thing that amidst some challenges and difficulties, I would be most mindful of things to be thankful for.  The thing I ask for most is "Please help me to hear."  But the thanks go on and on.

I feel especially keenly this year that we are such a blessed family, to have our health, a roof over our heads, clothes to wear, food to eat, and a steady source of income. We are surrounded by family and friends who care deeply and serve quietly but meaningfully. We have access to good medical care and technology. Our lives are richer for having the gospel of Jesus Christ to teach us how to find happiness in the things that matter most.

For all these things, I'm giving thanks.

Monday, November 19, 2012

The Language of a Cochlear Implant

At my most recent appointment with Amy, we talked about foreign languages. She was talking about working with her Spanish-speaking patients and how it can be difficult to understand them, especially when they speak in rapid-fire fluent Spanish. One of her strategies in those situations is to indicate which parts she understood, a word or phrase, and then ask the speaker to slow down and repeat what they just said. I made a half-joking comment along the lines of "Now you know what it's like to be hearing-impaired. Every conversation goes like that."

I've since been thinking about how that is such an accurate metaphor for both hearing impairment and learning to hear with a cochlear implant.  Participating in a group conversation with a hearing impairment is like having a basic understanding of a foreign language and being thrust into a conversation with several native speakers.  There might be a word or two or a phrase that is intelligible, but really, everyone is talking so fast that complete comprehension is impossible. There are probably many words that are unfamiliar. First, it takes a few seconds to figure out who is talking, missing critical information from the beginning of the conversation. It might be possible to get the gist of a story, but chances are that you don't know who the story is about (because the rest of the conversation uses a pronoun instead of the person's proper name) or when the story happened (because you didn't hear the storyteller say, "Last week, so-and-so said X.")  If you're brave enough to try to speak up, you might guess correctly and say something relevant to the conversation.  Or you might say something that's very odd to everyone else, even if it makes sense with what you think you heard them say.

The same is true with learning to hear with my cochlear implant.  As with learning a foreign language, it starts with one word at a time. The good news here is that I already have an English vocabulary stored away in my head, so I just have to learn how to identify the sounds of all those words. The bad news is that there are a LOT of sounds to learn how to recognize, just in speech, and even more from all the other kinds of sounds out there (the humming of fluorescent lights, anyone?)  It turns out that everyone is still speaking really fast, and if I'm lucky, I'll pick out a word or a phrase and try to go from there.  Fluency in cochlear implant English is a long way off for me.

But I will just throw this out as a little marker of success.  Over the last few days, I've tried listening to prayers with my eyes closed and I'm able to pick out some words and phrases. Surely, that's a small step towards fluency.

Sunday, November 18, 2012

Another check-up with Amy

On Thursday afternoon, I had another check-up with Amy at Austin Ear Clinic. Just like our other visits, this one was most helpful, and I left feeling a little better about how things are going.

When I got to the clinic, Amy had just finished up with a patient, a little boy about to turn 6. As I headed back to Amy's office, he was running around in the hallway while his mother was checking out.  He was very excited to show me his implant and hearing aid. So, I showed him my implant and my hearing aid, and he just about jumped for joy. Amy explained that he doesn't see many adults with a hearing aid and an implant. I talked with his mother just a little bit, too. She kept asking me how my implant sounded, and I think that she was hoping for a more awesome answer than, "I just got it three weeks ago, so I'm still learning how to use it."  I really wanted to wish her well as she and her son walk the road back to hearing.  Looking from my vantage point, the road they're on looks a little less scary, but they have no way of seeing where they're headed.

In my appointment, we did more of the same stuff: listening to quiet tones and loud tones to tweak my processor's programming.  When Amy loaded the new programs onto my processor, the sound was not dramatically different. I suppose that means that my hearing is stabilizing. That also means that the hardware is getting close to where it will stay longer-term, and now my brain needs to step up and learn how to listen. (After spending a few days getting used to the tweaks, I can tell now that voices sound deeper, like the entire population has got a bad cold, including me. It's a little unsettling.)

She added a new program to my processor.  In addition to "Everyday" and "Noise," I now have a "Focus" program, which, sad to say, does not do anything to improve mental focus. Focus allows me to concentrate on speech and sounds coming from the front of me while tuning out the noise from behind. One place where this could be helpful is in a restaurant, with William for instance. (We actually tried this out last night.  William thought I seemed to be keeping up with the conversation better than usual.)  Does anyone else want to take me out for practice?

Amy and I also talked about my longer-term progress, like when I can expect to hear on the telephone, for instance, and function without heavily relying on visual cues like lip-reading. Short answer is that everyone is different, and she didn't feel comfortable making any guesses, especially since I've had long-term hearing loss.  She was surprised that I was able to pick up on the "s" sound so quickly. Because the "s" and "sh" sound similar to me, she suggested that I practice listening to words that have those sounds at the end, rather than at the beginning.

There are support groups in Austin for cochlear implant recipients. Amy asked if I would be interested in going to a meeting. I honestly don't know if I would like that or not. I've never been a part of the Deaf community, but rather have considered myself to be hearing-impaired living in a hearing world.  The hearing world does not pay a lot of attention to hearing-impaired people, so my hearing loss is not something that I have much experience talking about or commiserating with others about.  So, I don't know what I would contribute to a support group or what I would take away.

Sunday, November 11, 2012

BOB Books and Food Words

I recently ordered a set of BOB Books, thinking that they would be helpful in starting to teach Emily how to read. Some of the parenting blogs I've read have great things to say about them as an emerging literacy tool. They come in a box set, which is very appealing to kids who like to take stuff out of containers (e.g. my children), and each book has about 10 pages in it. They are perfect for little hands.

It turns out that the books are also great for my listening practice! Each book emphasizes only a few sounds, and words are repeated. Sentences are short. The plot, if it can be called that, does not require much mental effort to follow, allowing me to concentrate on listening to the words. "Mat." "Sam." "Mat sat." "Sam sat." "Mat sat on Sam." (This is where things finally get interesting.) "Sad Sam." "Sad Mat." "The End." That's the first book. The second and third books introduce Dog, Cat, and Dot, and the perils of putting a hat on a dog.

We've been going through those for the last two nights of practice. Here are a few things that I've noticed as I've listened to William reading. "Cat" is always intelligible, but "hat" sounds like "hot" or "hut." William joked that my dream of living with an English-accented man has finally come true. But it is such an interesting phenomenon. "Cat" and "hat" have the same vowel sound, but for whatever reason, I'm not recognizing the "a" in "hat."

Something similar is happening with "dog," which often sounds like "dug." And "rag" sounds like "red." Any linguists out there who can explain why?

And if you remember the vocabulary card that I once threw across the room in frustration, you'll be pleased to know that tonight's practice with that list ended happily. We reviewed the list of food words. William read through the list several times so that I could hear each word. Then I closed my eyes to listen, without any external cues. "Oatmeal." "Cheese." "Banana." "Lunch meat." And a bunch of other food words. My comprehension wasn't perfect, and there were several words that I had to repeat. But by the time we had gone through the list several times, there was only one word out of 16 that I still wasn't able to pick up: "apple." The day that I can actually understand "apple" will be a major milestone because it continues to trip me up. Another problem for my linguist friends to consider!

The sound that has started to be an auditory guidepost for me is "s". I've never been able to hear the "s" sound in words. Now when I do my listening practice, I can hear it so clearly in words, even when the other consonants are not as clear. Who would've ever guessed it?

Saturday, November 10, 2012

A Month Later

One month ago today, my cochlear implant was put into my right ear. Has it really been a month already? In some ways it feels like a lifetime ago, and in some ways, it feels like just yesterday.  We didn't do much to recognize this milestone, but perhaps we should have.

I'm feeling almost 100% better (except for a teeny bit of dizziness if I sit up too quickly). My incision is healed, so I was able to get a long-overdue haircut this afternoon.

And tonight, I realized that for the first time in my life, I can clearly hear the "s" sound in words. It was so unexpected that I didn't recognize what was happening until I slowed down and truly listened. This must be the beginning of the miracle, evident only in recognizing the smallest changes in what I'm hearing but evident all the same. I expect to have more of those minor miracles in the coming days and weeks until I will look back over my progress and realize that the complete and majestic miracle has unfolded slowly but surely.

Thursday, November 8, 2012

Questions from Readers

I love reading comments on my blog, but I am never sure what the best way to answer questions is. If you leave me a question, are you going to check the blog every day until I answer it in the comments? (If that's you, I'm sorry for not being responsive.) Do you want me to email you the answer and risk everyone else who has the same question not knowing the answer?  So, I thought it would be fun to answer some questions that have popped up recently right here in the blog!  We'll see how fun I thought it was after I'm finished writing this post.

From Liz H.: are there other cochlear implant patient blogs out there?
Amy sent me the link to this one, which partly inspired me to start my own. This one hasn't gone much beyond the implant activation, and I thought it would be useful to record what life is like post-implant.  I haven't looked for others, but there are lot of Activation Day videos on YouTube, mostly for little kids.

From my mom who is very funny: Maybe all those years dots and dashs [meaning Morse code beeps] from Dad's ham radio kept those aural lines open. Is hamming in your future?
Nope. If my dad's experience is any indication, ham radio has got to be maybe the most exasperating hobby of all time.

From Farrah (who just had a baby and I'm still waiting to find out what the baby's name is. Maybe she will tell me in a comment!): Do you turn [the implant processor's volume] up incrementally or do you go back and they do it for you? How often will the volume get cranked up? 
At my appointments with Amy and Ashton, they fiddle around with the programming of my processor to make the sound quality and volume level more suitable. My next appointment is in a week, and after that, they will probably start to get further apart as I become more proficient at hearing. I hope. The processor came with a remote control that looks a lot like an old school iPod. The remote allows me to adjust the volume and sensitivity (meaning how far a way a sound is before I can hear it) depending on the listening situation. It is programmable, and right now, the programs are an "Everyday" program that picks up all sounds and a "Noise" program that picks out speech. I don't play with the remote too much, but perhaps I should. Good reminder.

Another one from Liz H.: so how does your hearing today compare to the hearing you had in your right ear when you had a hearing aid? 
This is an old question from Activation Day, but the answer is still interesting two weeks later.  My hearing is not where it was with a hearing aid. Right now, the implant is mostly acting as a "Hey, there's a noise in the environment. See if you can tell what it is."  It is picking up sounds that I couldn't hear before, like the fan in the baby's room and the beeping on my crockpot, but I'm still having a hard time telling where the sound is coming from.  So, I spend a lot of time listening and wondering and looking around to figure out what something is.

From my sister: Can I help you practice your z sounds?
Yes.


There, I think I'm caught up on answering questions. Keep them coming! (And those of you who sent questions for Amy, thank you!  I'll send those her way and hopefully, we'll get an interesting guest post from her soon.)

Wednesday, November 7, 2012

About blogging

I started this blog kind of on a whim, thinking that it would be a nice way for my family and close friends to read about my recovery from my cochlear implant surgery and how things were going post-activation.  I didn't know how often I would write in it, or whether I would even have anything to write about.  It was an experiment.  As I wrote, more and more words started coming to me. Posts would start forming in my head, and I had a nice list of things that I wanted to write about. Because I spent so much time in bed recovering from my cochlear implant surgery, I was able to write as much or as little as I wanted. The words and experiences kept coming, and I kept writing.  Here I am nearly one month after my surgery, and I'm still finding things to write about.

I decided to share the link to this blog on my Facebook page. The response was overwhelmingly positive, and I was surprised to see that so many people had started to read about my journey.  My family told me that they were checking it every morning to see if I'd posted, even my grandmother! A few friends linked to the blog on their own Facebook pages.  My mom has shared the link with her circle of friends. My sister-in-law, who has a degree in audiology, asked to share it with her network of audiologists in Austin. And I've given Amy permission to share it with any of her patients who might be interested in reading about cochlear implants from one patient's perspective. 

I recognize that blogging is a mostly self-centered pursuit. I'm writing about myself, and my little part of the world is front and center.  Parts of myself that have previously been private are coming out on the blog. But it would seem that's what readers want, to know more what it's like to be hearing impaired and to suddenly have the promise of hearing and to know that it isn't always a pretty process.

I knew that I wanted to have an accurate record of the ups and the downs (hence, all the recent whiny posts about my homework) because each post is a snapshot of how I am feeling on a particular day.  Someday I hope to look back and be most grateful to have a candid record, rather than a sugar-coated, glossy view, of what has been one of the hardest things I've done, to date (motherhood will probably take the cake on that one, though). Given how my readership has expanded far beyond what I originally intended (and I'm OK with that), I also hope that if there's someone out there considering a cochlear implant for themselves or a loved one, they will have a better understanding of what they might be in for. And someday, it will be a nice feeling to look back to see how far I've come.

Knowing that I have an active readership makes feel a compelling responsibility to tell my story and share it with others. The emotional risk of laying this experience out for the world to see has been worth it, because so many of my readers are watching my ups and downs without frowning in disapproval of a woman who throws cards on the floor when she gets mad. Instead, they've been sending words of encouragement and promises of prayers for me to have a better tomorrow.  And that has made ALL the difference.

Thank you again and again.

Tuesday, November 6, 2012

Mighty Unicorn Band Reunion

Last Friday night, I went to my high school band reunion. Alumni from all 80 years of the New Braunfels High School Mighty Unicorn Band were invited to march in the halftime show of the football game and play the Fight Song and Grandioso, two staples in the Unicorn band repertoire. It was the most fun I've had in a while.  In spite of my previous misgivings, I'm so glad that I got to go. 

My sister Carrie and I drove over to the high school together and promptly got lost. There are more one-way streets than there used to be around the high school. We found the alumni group, signed in, changed into our t-shirts in my mom's car hoping no one would see (just like old times!), and joined our respective sections. Carrie headed off the flutes, while I found my friend Heather from our Pit days. I told her that she had to be my ears for the evening, and she happily obliged.  Heather has been reading my blog (Hi, Heather!), so she knows what my listening situation currently is, and she was a lifesaver.

Once all of the alumni had been signed in, it was time to head out to the blacktop to learn our spots for the halftime show.  So Heather and I grabbed our cymbals and found out that we would be standing in the front of the whole band on the 50-yard line.  Awesome! Everyone found their spots on the field.  Then they rehearsed the first song, Grandioso. It was at this point that I noticed that my hearing aid was shorting out, leaving me with only the impressions of sound coming through my implanted ear. Extra awesome! Because who doesn't want to stand on the 50-yard line crashing cymbals visibly out of time because they can't hear the rest of the band?  After our first run through, Heather looked over at me and laughed, "You're so off!"  Very helpful.  Then we ran through the NBHS Fight Song, which has a much stronger drum beat, so I could at least crash my cymbals in time with the drums. 

After practice, there was a tailgate party where we could chat with other alums. I looked really hard to find someone else from the class of 1997, but I found only one person that I had barely known in high school.  (So, if anyone from the class of 1997 is reading this, I'm disappointed in you.)  But I did find a few other friends.

Carmen, Heather, Me, and Alice
Next up, we marched over to Unicorn Stadium with the current NBHS band. They have an awesome group of kids in the band right now.  Everyone was so welcoming to us old-timers. I haven't been in Unicorn Stadium in 15 years, so marching back in brought back a lot of happy memories. I loved seeing the hometown crowd in the stands already. There really is nothing quite like a Friday night high school football game in small-town Texas!

The halftime show was great. The current band's show is so impressive.  Their cymbals players were running on the field, crashing cymbals in time with the music!  Running!  All we alumni had to do was march front and back in a straight line. There were no disasters from what I could tell. My hearing aid mostly cooperated, and the cymbal part finally came back to me so I could play effortlessly. My mom sneaked down onto the track and made this great video of me and Heather playing our cymbals.


I especially loved seeing my old band directors.  Mr. Zientek (middle right) was the first band director I ever had, the one who assigned me to play clarinet. To his credit, he recognized me, though I imagine that I look a little different from 6th grade.  Ms. Bronk (middle left) was my head director in high school. Boy, did that lady ever have my back.  I don't remember her ever getting mad at me, even if I played wrong notes or seemed not to be paying terribly close attention to what was going on. Ms. Townsend (middle) was the drum instructor who taught me how to play keyboards with mallets. All are old friends that I was delighted to see again.


In this blog, I keep talking about neural networks of sound.  One of the things that I was worried about was how the music would sound.  It had been 15 years since I'd played either of the songs.  However, I was surprised at how quickly the parts came back to me. I'd played both songs so many times over the years that they were etched deeply into place. There are just some things that this old brain won't forget. And that is encouraging to me as I'm trying to learn how to use this new ear of mine.

Sunday, November 4, 2012

A Lesson from Molly

Last night's practice ended with me throwing my word cards on the floor in frustration. We practiced with word cards I'd picked up at my most recent audiologist appointment. "Sky," "flower," and "dog" were indistinguishable to me, and I couldn't hear a difference between "cat" and "grass." In our first round, the only word that I was able to pick out on first try was "butterfly," and that was because it happened to be the only three-syllable word in the set. The card-throwing resulted from one too many attempts to hear "bird" unsuccessfully.

Many people have generously offered to help me with my listening practices, and Amy said it would be a good idea to have practice listening to different voices. But right now, I can't handle the thought of the family and friends seeing me fail so badly. It's more vulnerability than I'm willing to expose right now. Even writing about it is difficult. If it hasn't been made obvious yet, I can be a pretty proud person.



Our ten-month old daughter Molly took her first steps a week ago. She stood up by herself, as she's been doing for at least a month now, and took two little steps as she lost her balance and fell into my arms. Since then, William has coaxed a few more steps out of her on a couple of days this week, and the most I've seen is six at once. Some days she doesn't feel like walking by herself, so she doesn't. She opts to crawl or when she can, to walk around with her fingers tightly wrapped around a grown-up's. But when she does take a few independent steps, she is so pleased with herself.

Molly is satisfied with her five clumsy steps forward before she collapses into someone's arms. She's more than happy to have help with her wobbly, stiff-legged practicing. She would be happy to have someone help her walk around our kitchen island over and over, because it's valuable practice for her and strengthens her little legs. When she gets tired, she crawls away, knowing that she'll feel better next time. And she is confident that with more time and practice, she will be able to run and jump and skip, just like her big sister.




So, I will take my one easy-to-understand word, "butterfly," and be pleased with that little wobbly-eared (if you will) success. I will keep up with my awkward practicing and maybe even let someone hold my hands along the way. When I get tired, I will be satisfied with having done my homework and remember that I can hear at least a little bit better than I did last week. And I know that with much more practice and stumbling over and over, I someday will be listening and talking effortlessly.

Molly and I will be baby-stepping along the way together.

Saturday, November 3, 2012

Old Pictures

While I'm away for the weekend, I didn't want to leave this blog unattended.  My mom found some pictures of me wearing my first hearing aids.  Here's one, from my brother's 2nd birthday party. I'm wearing the blue halter that my mom sewed to hold my hearing aids.  She made four to match my different outfits: blue, red, white, and yellow.  Very fashionable!


By 1984, I must have gotten new, less conspicuous hearing aids, since the halters are missing in this picture.


Friday, November 2, 2012

My First Post-Activation Check-up



This morning at 10, I had my first post-activation check-up with Amy and Ashton at Austin Ear Clinic. We started out by reviewing the difficulties that I’d been having since the implant was activated: inability to distinguish between noises (like a cabinet door slamming and footsteps sounded the same), constant buzzing in my ear even when the processor is turned off, and muffled voices.  Amy thought that the buzzing was a sign of my long-out-of-use auditory nerve being kicked back into gear.

From there, Ashton started doing the same tests that she did at my activation appointment.  First, while the processor was turned off, she tested the electrodes in the implant to make sure that they were still working.  Everything was fine there. 

Next, she tested how my range of hearing had expanded over the last week.  She started to play beeps at various volume levels and pitches and had me count how many I heard.  Some of the beeps were very, very quiet, almost where it was more of a buzzing sensation in my jaw than an actual sound, and some of the beeps were more audible.  That test was designed to test how low I could go. (Ha.) I could tell that it was easier for me to distinguish and count the separate beeps at this appointment.

The next test was a new one to me. This one was to determine how loud I could go. I had a little chart that had a Likert-type scale, ranging from “Off” to “First Sound” to “Soft” and up to “As loud as I can handle ALL DAY LONG” and “Uncomfortable.” No guessing on the number of tones. I just had to indicate how loud the separate beeps were by pointing at the chart. I noticed that the higher pitched beeps were harder to tolerate.

So, we did all of those beeps until Amy and Ashton were satisfied. They had a whispered consultation about how to program my processor according to the test results.  Then Amy said, “Let’s turn it on and see how things sound.”  She said, “It might sound a little different than what you were used to over the last week.”
And then they turned it on and waited. Amy said something, and I could immediately tell that everything sounded SO MUCH BETTER. I could hear a voice that wasn’t nearly as muffled but there was still some background noise, possibly from the laptop fans in the room.  Then Amy explained that they had put two programs on, one “regular” and one “noise.”  Then she switched to the noise program, and her voice sounded EVEN BETTER.  It was like night and day difference in how much more intelligible she sounded.

For the last part of the appointment, Amy had me go over her word lists. It was similar to what William and I have been doing at home, you know, the homework that reduces me to tears. She read off a list of grocery words, like oatmeal, lunch meat, milk, orange juice, etc., so I could hear what they sounded like.  She read them one more time and then covered up her mouth and had me guess the word as she read.

I don’t want to brag too much, but I pretty much rocked this. There were a few words that I didn’t get right on the first try, but there were no words that I couldn’t eventually figure out with more listening.  “Apple” was one of the words, and I didn’t mistake it for “lemon.” That was huge. Amy even said a few times that she was impressed with how quickly I was able to discern words, after having my new programs turned on for just a few minutes.

I would say that appointment was a huge success. I’m actually excited to do my homework now that everything sounds louder and clearer. Yay!

My next appointment is on November 10. Amy said that after that appointment, the processor should be set pretty close to the volume level that it will stay at for the longer-term.

Also exciting: Amy said that she would do a guest post for this blog! So, I have some ideas but I’m curious to know what my readers would like to hear from an audiologist’s point of view.  Suggestions, please!

Thursday, November 1, 2012

Musically Inclined

Tomorrow night, against my better judgment, I am going to my high school band reunion. It promises to be a thrilling evening, the highlight of which is marching in the half-time show of a New Braunfels High School football game with band alumni from all of the 80 years of the NBHS Mighty Unicorn Band. (If there is actually anyone there from 80 years ago, I will be astonished.) Anyway, my dad, my sister, and two aunts will all be there with me and other Unicorns to relive the glory days of Friday night football games wearing dorky high-waisted pants and going nuts (i.e. playing "Hey, Baby") every time the Unicorns managed to get their hands on the ball.

I am (understandably?) nervous about what tomorrow will hold. Not only will I have the chance to see people that I haven't seen in 15 years, I will also be trying to play the cymbals** during the NBHS fight song with my new ear. So, maybe at this point you are wondering what business I had playing in the high school band.

Probably not much. But I did it anyway. In the sixth grade, I signed up for band and was assigned to play clarinet. At some point halfway through middle school, my band director decided to switch me to the contrabass clarinet, which is the bassiest of the clarinet family and a beast of a woodwind. This is what I played for the rest of middle school and all through high school. No one else played the contrabass clarinet, so I always got to be first chair. At the risk of sounding cocky, I think I was pretty good at it, too.

It was about as ideal an instrument as someone with hearing loss could play. The range of notes it could play were all audible (inaudible instruments=flute and oboe), and pretty much all that was required to play the right note was to get the fingering correct (brass instruments require a lot more lipwork and a keen ear to get the note right). I'm oversimplifying a bit, since there was still a lot of work on getting pitch and technique right. For whatever reason, it didn't ever seem unusual to me that I would be playing a musical instrument, when the odds were seemingly stacked against me.

When I was in the fifth grade, my parents decided that all of us kids should start piano lessons. My brother and my sister both have a knack for music and rhythm, and I guess Mom and Dad didn't want me to feel left out. So, I took a lot of piano lessons up until my senior year of high school. Even with all of the work that went into playing the piano, I never felt terribly comfortable performing. I always had stage fright, along with a fear that I would play wrong notes and not know it while it was painfully obvious to the audience.

Playing the piano was a challenge because anything other than a major chord sounded dissonant to me. Even with as much practice and ear training as my poor teacher could inflict on me, telling a wrong note apart from a complex chord was nearly impossible. The intricacies of, say, a Chopin composition were utterly lost on me. There was just too much going on for my brain and my ears to process.

I remember one particularly frustrating lesson with my teacher Mrs. Wilson. She had her students work on musical theory and ear training, and she could tell that I was having a hard time. I think that she felt bad for me. She looked a little bit teary-eyed and said something to the effect of, "Even if you think that you can't hear what's going on, I can tell that you feel something because you get such beautiful tone out of the piano when you play." It was very kind of her to say something so encouraging.

The point of all this is that somehow, with a lot of hard work, music became a little part of my life. I am hopeful that somehow that training forged some neural networks that will come in handy sooner rather than later. And here's hoping that I can hold my own tomorrow night.

** Because the contrabass clarinet is unwieldy and difficult to march with, I played in the Pit (marimbas, xylophones, bells, etc.) during marching band. For parades and the fight song, I played cymbals. That's what I expect to play tomorrow night.

3 Weeks Post-Surgery, 1 Week Post-Activation

My cochlear implant surgery was 3 weeks ago.  Hard to believe that much time has already gone by!  A few days ago, I said to William, "I'm still figuring out what the new normal is for us," and he just nodded.  We're still taking things one day at a time, in hopes that the new normal is less frustrating than the current normal and more full of sound than the old normal.

I'm mostly recovered from surgery.  The vertigo is almost entirely gone, except I can get a little light-headed if I stand up too quickly or bend over too far.  So, I'm still careful about that.  My right ear is still numb, but my incision is healing nicely.  My sense of taste is almost back, but some things still taste a little bland.  But no trouble with spicy foods!  And I still have a bruise under my right eye.  It is the strangest thing--it doesn't hurt at all, but I still have a green spot on my cheek.  You know what, though? I'm so glad to be back on my feet. I've been catching up on laundry this week, and I'm itching to scrub the bathrooms.  It's such a nice feeling to be useful again.  I don't mind the occasional sick day, but being in bed for almost two weeks is ridiculous.

In terms of where I am after implant activation, that has been pretty well documented here.  I am having a hard time hearing.  By the end of the day, I am so tired of listening to Emily's chatter, especially since she tends to get shoutier towards bedtime.  All sharp noises are pretty much the same volume, so I am especially sensitive to slamming doors, things falling on the floor, Emily singing, or Molly tapping blocks together.  Because I'm not hearing a lot of variation in volume and little articulation between words, my days are strangely noisy and confusing.

That's where I am today. And every tomorrow will be just a little bit better than every today.

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.