El Deafo

Last week, the Newbery Medal winners for 2015 were announced.  One of the Newbery Honor selections was El Deafo by Cece Bell.  Here's what the Newbery committee had to say about this book:

In this insightful and humorous graphic novel memoir, Cece Bell portrays growing up with a giant hearing aid strapped to her chest. Themes of navigating a new school, sleepovers, finding a true friend and a first crush make this book universal in appeal. Bell shows that our differences are gifts that “can be turned into something amazing.”

So, naturally, this book sounded interesting to me.  I was able to snag a copy on Monday and just finished it this morning.  And boy, did this book blow me away.  As I read it, I kept thinking, "Yes. Yes. And yes again. YES." 

It's a graphic novel about a little girl who loses her hearing at 4 and learns to navigate the hearing world, particularly elementary school, while wearing a bulky hearing aid strapped to her chest.  The book is set in the early 1970s, long before behind-the-ear hearing aid technology was where it is today and long before cochlear implants were even a viable option for the hearing impaired.  She's pretty much a contemporary of mine.

So many experiences of hers resonated with me. Wearing a hearing aid strapped to the chest. Killing it at lipreading.  Choosing to watch TV instead of playing with other kids because it's too hard to keep up with the conversation.  Being terrible at PE and sports in general. Trying to fit in and always feeling different. Wishing for a friend that doesn't make a big deal about hearing aids. Using the hearing aid-microphone combo to spy on the teacher in the bathroom.  All of these could be taken from my story.

I recommend this to anyone who would like to better understand what it feels like to be a hearing impaired kid, with all of the insecurity, brief moments of courage, and just the ever-present awareness of being different.  This would also be a good read for parents of hearing impaired children. I just wish I'd had this book to read when I was younger.  So, go read it and then if you like, tell me what you thought of it.

One year later!

My one-year cochlear implant anniversary sneaked up on me.  But it's today.  One year ago today, my right ear was implanted, and my world changed forever.

It's easy for me now to take for granted that my hearing is better, because hasn't it always been like this?  No, it certainly hasn't, as anyone who has known me for a long time can tell you. But my ears and my brain are working so well together now that I'm forgetting that they used to be largely at odds (and my ears always won, leaving my brain to wonder what in the world to do with those dinky little signals that it was getting once in a while).  I'm grateful that I've been given a second chance, so to speak. 

A few weeks ago, I heard Molly singing "Twinkle, Twinkle, Little Star" in our living room, while I was working on dinner in the kitchen.  I commented to William that she had been singing that song over and over all day long, and he said, "I'm impressed that you can even hear her singing at all."  It's moments like those that make me pause to reflect for just a moment about the miracle that's been wrought.

It only gets better from here.  Can't wait!

My ears have been busy! (Right ear version)

While my left ear is slowly waking up, my right ear has been busier than ever.  Three examples.  Last week, when my mom was here, she saw me negotiate two listening situations with ease.  The first, the drive-thru at McDonald's (don't judge.)  I used to avoid drive-thrus (besides for the obvious reason that fast food should be generally avoided) because they were just too hard to hear.  I mean, if I'm hungry enough to go for fast food, then I'm going to be pretty mad if I get home and find out that I ended up with a spicy chicken sandwich instead of the original Chick-fil-a sandwich because I didn't hear my order read back correctly at the drive thru. 

I was driving, so I had to place the order at the drive thru.  Mom was poised with her listening ear craned towards the open window, ready to jump in if needed just as she has done in the past. (My mom has been doing this for a long time--she's great.) And I ordered the food without having to ask the worker to repeat himself.  Mom didn't have to jump in at all.  It was so easy.  Afterward, Mom and I were talking about it, and she said, "That guy was a low-talker.  I had a hard time hearing what he said."  And I said, "Really?  He sounded pretty clear to me."  And then we looked at each other and smiled, each of us recognizing a small but remarkable milestone in my progress.

Next, I phoned in a take-out order for dinner on the same day.  (I should pause here and say that we do NOT usually eat out this much. I promise.)  I called a local bakery, which must not get many take-out orders, because the phone rang forever before someone answered it.  (Mom was sitting at the table next to me, ready to take the phone from me if the conversation started to go south.)  I told the woman who answered that I wanted to place a take-out order, and I heard her mutter under her breath, "'kay, let me get a pen."  I heard her mutter.  That's a big deal for me.  And then I ordered our dinner without any glitches at all.  After I hung up, Mom said, "Well done, Rebecca!" and we smiled again at another small but remarkable milestone.

Last example.  My musical ear is coming back, finally.  A few weeks ago, I was in a cardio class at the YMCA, and all of a sudden, I realized that one of the songs being played was the Village People's YMCA!  (Haha, right?)  It was so surprising I couldn't pay attention to the instructor any more--I was just listening to the music that I recognized suddenly.  Also, I recognized the tune of the prelude organ music at church on Sunday, as well as the tune of the background music to a video that we watched in Sunday School.  It would seem that, at least for tunes that I already know, my ear and my brain are working together pretty nicely to help me make sense of it all.  Music to my ear indeed.

Activation Day 2

I accompanied Rebecca to her activation appointment last week and recorded some video of her first few minutes with her left implant on. I did not get as much footage as last time, but it’s something:



As Rebecca has already mentioned, we had a very good idea what would happen at this appointment, so it was possible a little less magical than the first time, but it was still exciting.

The first part of the video is when they are testing the electrodes, Rebecca is counting the beeps that she hears. Then the video skips to right after the microphone is turned on and Rebecca hears voices through it for the first time.

It is always easier for Rebecca to hear Amy’s voice than for her to hear mine. Whenever someone tells me to “start talking”, I can never think of anything to say. And, ironically, I think my voice becomes even deeper and quieter and harder to hear when I get self-conscious about it.

Rebecca did great at the appointment, and I can’t wait to see how much she improves in the coming weeks.

My ears have been busy! (Left ear version)

My left implant was turned on a week ago, and I've gingerly been trying to learn how to listen with my left ear.  It is slow going!  Part of the trouble is that I still have trouble getting the processor to stick to my head, even with a super strong magnet. I just have too much hair. It's like I'm a lion or something. On the day after Activation Day #2, I never got it to stick after 10 frustrating minutes and one messed up ponytail and decided to go processor-less for the day. Each day is a little easier to locate the sweet spot, and this morning was hardly any trouble at all. 

The sound is still pretty quiet and muffled, which is to be expected.  There have been times when the processor came loose, and I didn't realize it because the sound is almost imperceptible.  I tinkered with the volume a little bit tonight, so maybe I will hear just a little bit better tomorrow and each day after.

It's a little easier for me to accept that this is a slow process because I've been through this once before and because I'm not utterly dependent on my left ear like I was with my right ear.  I have one ear that works pretty well, so it only gets better from here, right?  Someday, I'll have two ears that work better than ever, and the promise of someday is good enough for me.

Post-Op Appointment

On the day after Activation Day #2, I had a check-up with Dr. Slater at 2 p.m.  My mom came to Austin to spend the day with us and to help me with driving.  At least, that was the plan.  On Wednesday night, I took my last dose of hydrocodone--I didn't plan it that way, but it turns out that was the last time that I needed it.  I just decided to tough it out from then on. 

So, by the time my appointment rolled around, I was driving!  Since I was able to drive myself, my mom watched my girls, and I went to my appointment alone.  This was the first day in a week that I'd been able to drive myself.  I was mindful of how long it had taken me to feel well enough to drive after my first surgery and once again felt very grateful for my speedy recovery.

This appointment was so different from my post-op appointment in October.  Obviously, I was feeling much better, so I had fewer complaints for the doctor.  I was surprised to see Dr. Slater walk in, since my last appointment had been with the PA.  He greeted me warmly and asked how I was doing.  I told him that I was doing fine and asked him what he'd done differently this time.  He kind of shrugged to indicate "nothing much, really."  So, I started asking him why I wasn't so dizzy and why my sense of taste hadn't gone out.  He said that his surgical technique was intended to minimize the trauma to the inner ear (which it did).  He also looked at my chart from my first surgery and saw that he'd had to cut a facial nerve to get to my inner ear, and that's why I had the mild paralysis and lost sense of taste.  (Incidentally, I'm not sure that my sense of taste has completely come back on the right side of my tongue, but it's much better than it was.)  He was very non-chalant about this, as if he goes around cutting nerves all the time (which he probably does, actually.)

The most exciting part about the appointment is that Dr. Slater asked his nurse to remove the surgical glue behind my ear.  She worked for a bit but couldn't get it off and said that I would have to wait a little longer and then try again at home.  A few minutes later, I noticed that it was bleeding a little and pointed this out to Dr. Slater.  So, he came to look at my ear more closely and decided to pull off the glue himself. Rip! Actually, it didn't hurt much at all, and I'm glad that he did it because I would've been kind of nervous about pulling it off myself.  Oddly satisfying.

One other thing that he mentioned is that I may need to watch out for more balance problems, especially if my allergies are flaring up.  I didn't notice any problems after my first surgery, so I doubt that my allergies will give me much more trouble than they already do. How can they possibly?? (My Austin readers will appreciate that.)  And that was pretty much it for my appointment.

Dr. Slater wants to see me in six weeks for one last check, and then the medical side of the surgery should be neatly wrapped up for good.

Activation Day #2

Activation Day came and went without too much excitement.  As we were driving home from the appointment, I told William that it hadn't been as exciting as I'd expected.  I think that's because I knew what would likely happen and (this part is encouraging) my brain and my ear knew what to listen for already.  That makes me hope that the learning curve won't be so steep on this second go around.

The appointment started with one of the clinic's doctoral externs, whose name I can't remember.  Amy was finishing up another appointment and joined us later on.  The extern started setting up the equipment and showed me my new processor (the external component of the implant). 

Turns out I was wrong about what will happen when I upgrade.  For now, I have a complete processor kit, just like the kit I got back in October, with two processors and a plethora of accessories.  I'll wear the processor that was activated and had to promise not to open any of the other boxes in the kit.  When the upgrade is available, we will send the entire old kit back to get the upgrade kit.  I just have to say that the company is pretty trusting with this arrangement, considering how many thousands of patients across the US are waiting for the same upgrade.

So, the extern handed me the processor and had me figure out how to put it on.  I spent about 5 minutes trying to find the spot where the processor's magnet would attach to the implant's magnet.  I have too much hair!  Sheesh.  But really, the other difficulty is that there is still some swelling from surgery one week ago, and that can also affect the connectivity.  I hope the swelling subsides soon.  We finally got it sorted out after putting a stronger magnet on.

By this point, Amy had joined us, along with yet another extern who was there to observe.  I felt a little like a specimen on a microscope.  Amy explained how the mapping process would work, which was no different from any of my previous appointments for my right ear's processor.  The extern played a series of beeps, and I had to listen.  If I could hear them, then I had to count them, anywhere from one to four beeps.  So, we did this for a while, and I again felt like a specimen responding to stimulus under observation.  William and Amy were having a highly animated conversation that looked much more interesting than what I was doing.  I could've eavesdropped but didn't since I wanted to give my full attention to the beeps.  (Lab specimen).

Finally the mapping part was done, and Amy said that they were going to turn it on.  So, they did!  And I could hear little tiny sounds.  I emphasize that they were tiny.  The only reason that I knew they were sounds is because I remembered my first appointment, and how I had a magic moment when I realized that I was hearing for the first time.  Amy started talking, and right away I heard her voice.  It was very faint but distinctively Amy's. 

With all the exciting stuff out of the way, Amy turned to William and said, "Now it's your turn to talk."  Then it was William's turn to feel like a lab rat!  So, he started talking about our vegetable garden, and I provided feedback about how he sounded. (Not terribly intelligible, which was not his fault.)  Poor guy eventually got drowned out by my explanation about the current state of the garden and then subsequent questions and other funny gardening stories from the audiologists.  Who knew there was so much to say about eggplant and okra?  I bet William didn't!

Despite all of this, Amy was encouraged by how I was doing, so she had me and William do another experiment.  He covered his mouth and listed colors one by one, and I had to guess which color he was saying.  Ugh.  Too hard!  I think that I heard "purple" and "yellow," and the rest were too hard to distinguish.  "Black" and "white" sounded too similar to tell them apart.  Funny, no?

And that was pretty much it for the appointment.  I thought it went well, even though I've pretty much gotten the routine down by now.  My homework is to go without the processor in my right ear for an hour or two and to practice listening with my left ear alone.  I'm also supposed to practice turning the volume up incrementally to increase my listening tolerance.

I go back in two weeks for more fine tuning.  The miracle continues to unfold slowly.