activation

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.

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before activation

Tomorrow is Cyborg Day

The FDA still hasn’t approved Advanced Bionics’ new Naida Q70 processor, but as Matt mentioned earlier, my audiologist has offered to loan me a secondhand processor (Advanced Bionics’ Harmony).  This means I’m going to be–wait for it, y’all–sooooo turned on tomorrow.

Whoa.  Tomorrow?  Tomorrow.

I’m nervous.  I’ve been reading a few cochlear implant blogs in preparation.  This one is my favorite since the author’s history is similar to mine: she’s been deaf all her life and got an implant as an adult.  Her implant activation wasn’t particularly exciting–she heard nothing but beeps.  However, her “ear” grew stronger and stronger each day, and she grew to love it.  In fact, she loved it so much, she got her other ear implanted!  How encouraging is that?  So, if I get frustrated or worn out tomorrow, I’ll think about this blogger and her story.

Good night, everyone!  Wish me luck.

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before activation

I’m so excited!

“So …. are you excited??!!”

This is a question I’ve been asked a lot lately. I usually nod and say, “Yeah, totally!” But, to be honest, I don’t really feel that excited. I mean, I am. Sort of. Kinda….?

“Excited” is the wrong word to describe what I’m feeling right now. A more accurate description would be “curious and apprehensive.” I’m curious, because I know having a cochlear implant will enrich my life, but I’m not sure how or how much, yet. Apprehensive, because hearing bionically is something I—and most people—have never done before. Which is totally bizarre, if you think about it.

I’ve been assured by many that I’ll love it. Neat! But what exactly is “it”? I have absolutely no idea. If I said to you,

“Hey! I’m going to cook you some pufflinkles. Yeah! What do you mean, you don’t know what pufflinkles are? Everyone loves pufflinkles! They taste like flops and sandies and smell flutty and porsive. They’re cloppy but not too cloppy: they have the perfect amount of cloppiness. Have a seat and I’ll bring out a nice hot, steaming plate of pufflinkles in a few minutes. MMMMMmmm I bet you can practically taste it already.”

Would your mouth be watering? I’m going to go out on a limb here and say probably not. Mouths don’t water unless they know what to expect. And neither do ears. (Actually, ears probably shouldn’t be watering at all….)

Not only is it hard to muster up excitement for something I’ve never actually experienced, I’m harboring the knowledge that it’ll be an artificial experience that’ll take months to adjust to. Which is where the apprehension comes into play. The implant/processor will make me hear like–well, like a machine. To elaborate on my previous analogy, while most of you stuff your faces with pufflinkles, I’ll be nibbling on vufflinkles—vegan pufflinkles. As anyone who’s ever had tofurkey or vacon or anything inside quotation marks at a vegetarian restaurant knows, vegan versions of anything, while perfectly edible and tasty in their own right, don’t begin to compare to the real thing. (And have way too much sodium.)

And man, that’s going to take some getting used to. A common observation of a new implantee is, “Words sound like blips and bleeps.” Blips and bleeps? You mean, when I lovingly whisper good night to my husband, I’m gonna hear “Bleeeep Bleeeep” in return? (Did you just call me a fucking bitch, Matt?)

I know those bleeps and blips, once my brain adapts, will eventually evolve into more natural-sounding voices and sounds, but that will take time. What if the transition drives me crazy? What if it frustrates me, makes me cry? What if the implant doesn’t work that well for me? What if I’m no better off than I am now? What if it doesn’t live to everyone’s expectations? What if, what if, what if! I don’t know! I don’t know anything! This is all so weird and new and hardly anyone can speak to me about it from experience. So yeah, while I’m committed to making the most out of this journey, it’s hard to be excited before I’ve even shifted into drive.

That said, I hope that in a year from now, after I’ve adjusted and transitioned and all that jazz, my enlightened future self invents a time machine and goes back to the present day to say to Today Me:

“So …. are you excited??!!”

And also:

“Girl, you are gonna be soooooo rich from inventing this time machine!”

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post-op

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!

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tech talk

Expectations

Lindsay beat me to writing about her first post-op week. Isn’t it remarkable how little doctors tell you about surgery that you’re about to undergo? When I had my tonsils out at age 30, they warned me that having such an invasive procedure at that age would be “pretty painful”. Ha! Understatement supreme.

She’s feeling stronger every day, and we’re rapidly approaching the moment when Processor meets the Implant for the first time. As she said, we’re still waiting to hear that the new processor from Advanced Bionics is approved by the FDA. Frustrating, but hopefully worth the wait.

In the meantime, I thought I might write a little about the expectations for what a cochlear implant might do for Lindsay. She has already gotten a few messages from friends and family asking if she can hear. This is one of her big worries: to have people think that this implant will cure her deafness. She is afraid that people that have known her all of her life will come up and ask, “Can you hear me now?” like a Verizon commercial circa 2002. She doesn’t like to disappoint people.

I know this is a little difficult to understand, it took me a while to get it, but the cochlear implant is not a cure for deafness. It’s not a replacement for the cochlea she was born with, nor does it physically attach to her brain in any way. In fact, the actual implant is completely worthless without an external processor. When she disconnects the processor from the implant (again, with the magic power of MAGNETS!) she’ll always be profoundly deaf (the clinical term, not mine).

The technology gives her an approximation of hearing. While the quality of hearing that these processors produce has advanced dramatically (in the 20 short years that the cochlear implant has been in use), she’ll still be missing many “layers” of sound that people with normal hearing experience. And we won’t know what she’ll actually hear until they switch on her processor. It’s important, for her and for people that know her, to think of this technology as a potential improvement to her hearing experience, rather than a cure for being deaf.

There are many blogs that detail various experiences people have had with a CI. They are all interesting, in their own way. To some, it’s a magical device that returns hearing to people that have lost it later in life. To others it’s just a upscale hearing aid. Some people can talk on the phone, and others never learn to. Some start to enjoy music for the first time, ever, and some feel lucky to learn that music is playing almost everywhere you go. Even in grocery stores. (Which, when you really think about it, is kind of strange…)

Lindsay might have one of those overwhelming emotional reactions that some people have, but most likely she’ll just hear a series of “beeps”, at first, as her brain struggles to “re-learn” sound. And that’s another concept that is incredibly hard for someone that has always lived with hearing to understand: Lindsay’s brain, most likely, barely remembers what Sound is. At least, with a full range of auditory frequencies. It has been about 30 years since she could hear enough to not need hearing aids, and at this point without her aids she cannot hear anything naturally. For being implanted, it helps that her hearing loss was somewhat gradual – it increases the chances of her brain remembering sound. But this next year with a CI is going to be a challenging one for her, while she has to process the new sounds she’ll be hearing, through a device that is doing it’s best to replicate sound like a fully-functioning ear would. Again, the processor can’t fully simulate natural hearing. But the doctors think that at the very least it’ll be an improvement over her hearing aids.

Lindsay says that she imagines that hearing with a cochlear implant will most likely be similar to looking at a pointillistic painting. If you take in the whole painting, you get the full picture, but take a step too close and all you can see are a series of unrelated dots. One of the reasons she’s willing to wait for the newest processor is to make sure that she has the very best tool to make sense of every “dot” of sound that will be coming to her.

The irony is that thanks to ever-improving tech, her hearing will get better and better.  My ears, however, bombarded by years of high-decibel snare hits and electric guitar chords, will worsen. Ha! So…it’s exciting, and important, at the same time, her getting this cochlear implant. It’s a journey for everyone involved…Lindsay, especially, and me, too, but also in part the people at Advanced Bionics – we’ll both be giving them feedback as to what works and what needs tinkering.

In the meantime, maybe, instead of asking her if she can hear…just talk to her, as you always have. I’m pretty sure she’ll let you know if there’s a difference!

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Uncategorized

FDA: Fully Delaying Activation

So!  Update!

Yesterday was supposed to be the day when I had my implant turned on [replace with phrase that doesn’t make me feel like The Terminator], but the FDA still hasn’t released the Naida Q7o, the latest processor from Advanced Bionics–available pretty much everywhere except in the US.  Rather than going with their previous model (Harmony) with older technology, I’ve chosen to wait for the Naida, as I’ve been assured the FDA will be approving it any day now….

Patience is a virtue, after all, right?  ::taps fingers on table::

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