tech talk

Batteries are the New Black

Just a quick post, about something that Lindsay experienced the other night while we were out and about with friends. Another enormous difference between hearing aids and her CI processor: what happens when the batteries die.

I didn’t know this, but hearing aid batteries die slowly, with a very gradual loss of sound. A typical aid battery can last for a week or two. But not so for the power-hungry processor: like a typical smartphone, you have to recharge those batteries every night, and they last for about a day, if she’s lucky. When she isn’t lucky, there is nothing gradual about the sound loss – she can go from hearing to hearing nothing mid-sentence. The processor warns her that the battery level is low, by giving her a few beeps in her ears beforehand, but that’s all she gets. It always surprises her.

things heard

One Lonely Drum

We’re going to be crossing the one-year mark of Lindsay’s implant surgery and activation in the next couple of months. I truly don’t understand how a year could go by so quickly. But I do know that this has been an exciting one.

Yesterday, in the car, I was memorizing some lyrics to a song I was performing with some friends. We were coming home from a road trip – Lindsay was driving, and I put the song on the car stereo and started following along. When she asked me what some of the lyrics were, I wondered just how many she could make out on her own, without reading my lips. An experiment! Here’s the song:

One Lonely Drum
(Kevin O’Donnell)

Stop the parade but leave the streets all closed
Tell the children to remove their brightly colored soldier’s clothes
Oh please, let one very lonely drum still drone.

Set baby on your shoulders and let his balloons rise up
Still hold your post; the marching won’t let up
The sun is still above but no eyes will blink
The shiftless crowd will know and wonder what to think.

May the wind blow cold and make our mouths close
The old and wise don’t know what history has told
There’s nothing new in death and ends all come again
So stop and hear the leaves underfoot… were once green.

So much remains the same
Even as so much as changed
A thousand men and women and children… change.
May the fifer’s lungs leave last song unsung.

I went over each line, sometimes in sections, sometimes even down to a single word. The song was perfect as a hearing exercise, because the lyrics are a little esoteric. This killed Lindsay’s preternatural ability to decipher sentences from context, a skill that all lip-readers have to have. With lines like “May the winds blow cold and make our mouths close”, she couldn’t guess what the sentence was, she had to work hard to hear it.

A year ago, even with her hearing aids in and cranked to the max, she might have made out one or two words of the song, total. And most of those would have been lucky guesses. But 10 months into living with a cochlear implant, by my (very un-scientific) estimation she could repeat about 60-70% of what I read to her, with no lip-reading.

There were sentences that she got immediately. “The old and wise don’t know what history has told”, for example – sentences with more hard consonants, in general. Then there were pieces of phrases that she could make out, but got stuck at more ‘nasal’ phonemes (“mouths”, “unsung”). And there were words she didn’t know at all, like “fifer” (a word that very few people know, probably, unless you’re into tiny flutes). She had to give up on that word completely, but before she did, she tried words like “night” and “bike” and “life”. She was getting the “aye” sound pretty clearly.

This, ladies and gentlemen, is completely kick-ass. It may seem like a small feat to some of you. It’s not talking on a telephone, or following a movie without captions. But it’s a whole world of difference to the both of us.

“So much remains the same… even as so much has changed!”. Hell, yeah!

cued speech

AGB Montessori! and Twista: Cued Speech is Great

Last night Lindsay and I went to a gala and silent auction for the Alexander Graham Bell Montessori School, the school she started school at. Lindsay was one of the school’s first students, and it was (and continues to be) one of the leaders in use of Cued Speech, thanks to its program Alternatives in Education for the Hearing Impaired (AEHI).

As I’ve mentioned before, I personally owe a lot to CS; learning it helped me with the very few communication hurdles Lindsay and I had at the beginning of our relationship. I’m still not a whiz at it, but it’s easy to learn and a great system for the hard of hearing, their friends and relatives. It’s not about language, though Cued Speech can help with that-it’s about communication, which is important whether you are deaf, or Deaf, or hearing. It’s a tool, and a great one for anyone.

Our friend Ben Lachman was honored last night for his recent work in spreading the word of CS, as was the Illinois School for the Deaf, which has recently made mandatory some all-Cue classes in its curriculum. It’s very exciting. The kids are excited. And so is Twista:

Ben and friends made this great video the other week and I’m still kind of stunned at how fast he’s able to cue, in it. Sure, he’s been Cueing all his life, but still. My “speed Cueing” classes start next week.

I know that I’ve shared the official Cued Speech site before, but Ben and a group called Cue Cognatio have put together a new one recently:, aimed at a younger audience, I suppose, but not exclusively so. There is a whole lot of great video on the site…and one of my favorites is Hannah’s Cued Speech Story because it does such a great job of explaining that Cued Speech doesn’t have to replace Sign Language for the deaf…it’s just an easy way to make communication easier for deaf and hearing alike.

And the videos that the group calls “Cuesic Videos” – people cueing songs (like the Twista one) – are going to be fun to watch. Lindsay has always told me that the way for me to get faster at Cueing would be to cue along to songs that I knew. Ben asked us if we’d do a Cuesic Video together…a challenge that I am ready to take. Stay tuned!

things heard

Staying Alive

Before I post about the great time we had at the AGB Montessori Gala last night, which won’t mentioned cochlear implants at all, I wanted to say that even though the evening (for us) was mostly about Cued Speech…

At one point in the evening while the DJ was spinning various popular songs, Lindsay realized suddenly that she could actually hear the track he was playing. There have been times in the past year that she asked me whether she was hearing a certain song, in a bar or restaurant, perhaps, and was disappointed to be wrong. Last night she nailed it: Staying Alive, by the BeeGees.

A look to the dance floor gave her all the confirmation she needed: a sea of arms spastically pointing fingers to the air and to the floor. Ten o’clock, four o’clock, ten o’clock, four o’clock…stayin’ alive! stayin’ alive!


Little Things

She now hears what she calls “pretty” things: church bells ringing, solo piano pieces, certain voices that have a clear and resonant quality. Julie Andrews in the Sound of Music, for example, which has always been one of her favorite things. (Woof! Sorry.)

She hears the dogs’ under-cut toenails as they scuttle across the hard wood (vinyl) floors. She had no idea they made so much noise. This is also kind of annoying, she thinks, and I have to agree, but it’s neat that we can share this annoyance now.

Garbage trucks and other street cleaners, airplanes and buses: she heard them before, sometimes, but now she hears them down the street, around corners. She has to ask what some of the sounds are, but I don’t mind.

Last night she heard the waitress, standing behind her, ask a question. She answered without turning around. She doubted what she heard, out of habit, but she was pleased that she was correct.

And more and more she hears me: the timbre of my voice (tenor-pitched, a nasal tone). When it’s quiet in the house she sometimes answers questions that I don’t look at her to ask. And it’s almost like living with a different person when that happens.

But it isn’t a different person, and I have to remember that no matter how good she gets at this, I can’t get lazy about communicating with her. And it’s still the beginning.


Lindsay Doesn’t Squeak Any More

She used to, though. That is, her hearing aids did.

Every time she had to wear hats, or if someone put a hand to her ear, or sometimes even if she yawned too vigorously: the microphone in her hearing aids that sampled her world and sent that sound to her ear would feed back, causing an audible “squeak”.

But she hasn’t worn a hearing aid in many months. And while her CI does have a microphone, it isn’t amplifying any sound externally, so…

She might be getting some really nice ear muffs for Christmas.


In Berlin!

Lindsay and I are in Berlin, for our year-delayed honeymoon. And headed to Italy soon. We spent the week before we left packing and preparing, so I didn’t get to write much about the drama that accompanied the arrival of the Naida processor…needless to say it seemed to us that Advanced Bionics was fairly disorganized in the deployment of devices and parts. Lindsay got all sort of parts that she didn’t order, and didn’t get some parts that she did order, and it took nearly a week to get it all sorted out (and we’re still not 100% sure that we did). It wasn’t a big deal, but it was a little frustrating to go through right before a big trip.

That bit of negativity aside, the difference between the Harmony and the Naida are immediately noticable. She’s already hearing things that she didn’t before. And quieter noises too. It’s smaller than the Harmony, and the color she ordered (brown) blends with her hair better. She was a little annoyed at the new cabling system; the cable itself attaches to the magnet/mic with a lot of extra depth, but to me the entire processor is a lot less visible than the Harmony. So if you don’t want to hide your Naida, order it in hot pink.

We’re on vacation and she made a bold decision to a. not bring the rechargeable batteries and b. not bring her hearing aid. Before now she used the hearing aid a lot as a “crutch”; it was a familiar sound and in some ways provided more volume for her (as maybe we’ve mentioned before). But in a desire not to keep up with two different sets of batteries and gear she left it at home, and has been hearing the entire trip with just the CI. And so far, so good!

I wish that I could better detail the new things that she seems to be hearing. I notice, of course, when she asks me what the “pretty sound” is (usually chiming church bells, actually) and now, seemingly as a Theme for her entire cochlear implant experience, she will say “Crickets!” when we pass particularly loud critters singing at night. It’s a beginning, for sure. And she knows that her depth of sound has changed and will continue to change (hopefully). The other night she told me that she was glad that she had the implant, that it was already worth it, which I was happy to hear.

Internet/time is spotty for the last/next week or so but we’ll write again as soon as we can.

tech talk

Naída is on the Way!

Lindsay got word yesterday that she made the “first wave” cut of people that will get the new processors. She had booked a longer than normal mapping session with Mickie on Friday in the hopes that it would get here in time, and barring any postal hiccups, she’ll have it in hand tomorrow!

While we both have been so grateful to Mickie and Northwestern Hospital for lending her a processor, I think that it’s going to be really great for Lindsay to have a processor of her own.


Breaking the Silence

…of this blog, that is. It is true-it has been a long and eventful week, and it has taken a while to process.

I know that Lindsay will write about the experience of being turned on first hand, and that’s the more important post to be reading, but it has been an emotional week for both of us. Because it’s the beginning of a journey for her, and in turn for me, too, and everything around us is a part of it: the newly-experienced sound of Penny the dog sneezing, a more specific noise attached to the simmering of onions in a pan, and so much more.

She was very nervous on the way to the hospital. More nervous, really, than she was when she got the implant itself, which was a three hour invasive operation. The operation was something that she could quantify: you go in, have a surgery, go home, recover. But the activation of the implant, and whatever changes/additions this much simpler process would bring, was unknown, and therefore more frightening. But my wife is a practical person. She doesn’t make decisions lightly, and takes all changes cautiously. She didn’t go into this process with expectations, which gave her sort of a level playing field to work with.

But she was surprised by what happened when Mickie the Audiologist turned on the processor for the first time. She did cry, a little – perhaps partially from the overwhelming experience of hearing sound internally for the first time in a while. But she also had sort of a mini panic attack brought on by the new signals sent to her brain. And afterwards, leaving the doctor’s office and heading out into downtown Chicago, she seemed stoned… unable to concentrate, distracted by everything. We immediately went to Big Star for margaritas.

She was worried that she hadn’t been honest enough about the initial mapping, and she had asked Mickie to set it too low, because the implanted ear seemed quiet and muffled compared to the ear with her hearing aid. But as the week progressed we decided that it was just different, not worse. It’s still different. My theory is that she’s hearing more dynamics in the sound, compared to her hearing aid which simply magnifies any and all sounds. And my other theory, that she has been sort of imagining sounds – the noise that shaking a box of sugar cubes makes – might be true. “That’s different than I expected!” she said, shaking vigorously.

On that first day I just wanted to look at her. I just watched her as closely as I could, as if by watching her every move I could glean some idea of what she was hearing and of what she was going through. I wish more than anything that I could be inside Lindsay’s head this past week. I’ve rarely felt more unable to help her with something. I know that the first frequency mapping has to be flat so that she can get used to the device. And I know that there is such a long way to go for her to make sense of these new sounds. But it drives me crazy that I don’t have the ability to suggest “you need more mids in that mix” or agree that “yes, those high frequencies are a little harsh”. If they are. She’ll have to figure those things out for herself, in her own time.

Next? More adjustment of the processor, more getting used to the device. More listening and asking questions. I asked her the other day whether I was allowed to be excited when she noticed those onions simmering on the stove. It’s her time to ask questions and I don’t want to be pesky about all the small changes I see when she’s going through so many big changes in her own head.

But she said yes, I was allowed to be excited, and I knew that she was excited, too.


Mickie the Audiologist is Swell

I’m scooping this scoop!

LJ got an email from Mickie the Audiologist today, with the news that the FDA still hasn’t approved the Naída CI in the United States. A few months ago, she had booked two appointments post-surgery: one as a “turn-on” date, and another for the 1-week mapping adjustments. Because Lindsay’s processors aren’t officially legal yet, she missed the first date this week, but kept next week in hopes that at any minute now…

Knowing that Lindsay is probably ready to get this show on the road, Mickie also wrote that she had managed to cobble together (her precise words were “compiled”) a processor from bits and bobs at the hospital that Lindsay could borrow next Tuesday! It won’t be the new’n’fancy…we’re not even sure what she has put together, but even if it weighs fifty pounds and makes everything sound like nails on chalkboard (it won’t), it’s a start until her very own pieces get shipped.

Exciting! and let me just say that every single audiologist I’ve ever met (or talked to) has been so kind, and/or interesting, and/or inspiring. In a fit of love for Audiology, I actually looked online into what it would take to become one, myself…but I doubt I’d pass the Math necessary.

That’s OK. I’ll strive to be like an audiologist, instead. Thanks, Mickie!