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.

Standard
activation

So Turned On Right Now

This post is long overdue. It’s been, let’s see… carry the one, add the the four, okay… over three weeks since I was turned on. Damn. That’s practically two periods and three-fourths of a box of tampons ago.

Sorry!

Being turned on wasn’t what I expected at all. Mickie the Audiologist placed the processor on my ear, slapped the magnet on my head, and hooked me up to her computer. She then sent a series of tones to my implant so that she could set my thresholds. At first, I didn’t realize that those vibrating shocks inside my head were these tones. I thought my head was spinning and humming because I was about to pass out from nerves. But no. I quickly realized that the feeling in my head was sound. I burst into tears. Not because I was touched by the beautiful magic of the experience, like a unicorn getting its horn stroked for the first time. Not because I was disappointed, like, oh, this is what I’ve been waiting for? No. I cried because I was totally. freaked. OUT.

My hearing aids have always amplified sound for me in an external-ish way. The cochlear implant was utterly internal. I could even feel it in my chest. A freaky, foreign sensation.

When someone–let’s call him Peter–tickles your foot, you laugh and say ha ha ha stop ha ha ha. Peter continues tickling your foot. Panic creeps into your voice and you’re like, ha ha? stop … no really, STOP. Peter stares at you with those empty black pools that he refers to as his eyes, picks up a scalpel (I guess Peter is a doctor–his mom must be so proud), SLICES YOUR FOOT OPEN, and proceeds to tickle your foot from the inside out.

That’s kind of what hearing with the implant for the first time was like. Taking a sensation to a whole new disturbing, fucked-up level.

I spent the first few days squinting and wincing and having panic attacks. I could barely focus. My brain was functioning in slow motion, but the world around me felt like a Baz Luhrmann movie. Heightened, frenetic, over the top, not enough John Leguizamo. Every noise, every movement, every light was just too much. I wanted to hole up in a dark room by myself. And I did, for long stretches. The first week was physically and emotionally exhausting.

I think part of the reason why it has taken me so long to write this post is that I’ve been struggling so much with understanding this experience for myself that I couldn’t imagine how to explain it to others. To be honest, I’m still not sure how to tell everyone what this is like. But I’ll try, little by little, as this experience unfolds over the next few months.

At first, it sounded like there were crickets inside my head. Loud, angry, sexually frustrated crickets. CHIRP CHIIIIIRP CHIIIIIRP CHIIIIIIIIIIRP. It was, to put it mildly, maddening. But now, three weeks later, thank GOD, the crickets have gone. The ones inside my head, that is. The real ones are still out there, making actual noise.

I went out to dinner with my parents and Matt one evening. When we returned home, they heard a particularly loud cricket down the alley. My dad asked if I could hear it. I instinctively went to say “no” but stopped myself when I realized that YES, yes I could hear it. Very clearly, in fact. Matt followed the sound of the cricket and discovered it a couple hundred feet away. You know what that means? I could hear the cricket from two hundred whole feet away! Curious, I turned off my processor and tried hearing the cricket with only my hearing aid. Nothing. I walked closer… closer. 100 feet. 50 feet. 25 feet. 10 feet. There! Finally. I had to practically be on top of the damn thing to hear it. So, to summarize:

cricket to hearing aid: 10 feet; cricket to processor: 200 feet.

Neat, huh?

Standard
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.

Standard
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.

Standard
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!”

Standard
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!

Standard
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!

Standard
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::

Standard
post-op

R-r-r-recovery

Oh man, y’all.

I had NO idea it would be this rough.

I had surgery on my hand a few years ago: anesthesia, scalpels, the whole works. Immediately after leaving the hospital, Matt and I spent the next several hours rolling on Swedish ecstasy. (We went to Ikea.) When we got home, I followed some confusing-as-fuck cartoon directions and put together our newly purchased dish rack with one hand. ONE HAND.

Does that not sound like SuperPatient to you?

Not only that, despite getting prescribed an insane amount, I took only one Vicodin throughout my entire recovery, favoring Ibuprofen the majority of the time. The nearly full bottle of Vicodin is still in my medicine cabinet, collecting dust, its yellowed label chastising me for not accumulating the five (now outdated) refills. Yeah, that’s right, I could easily have had hundreds of Everyone’s Favorite Painkillers/ Party Fun Time Pills, but I opted not to take them. Because I’m not a pussy.

See? SuperPatient.

The implant surgery, like my hand surgery, was outpatient, meaning I’d go home the same day. The surgeon, whom I met weeks earlier, described the procedure as simple and easy. Naturally, I expected my recovery to be a breeze. After all, I was SuperPatient, a pro at this surgery-having thing. There was a Gino’s East Pizzeria across the street from the hospital, so I told Matt that we’d be going for spinach deep dish pizza right after the surgery. Also, I’d be driving to Ikea (hand surgery shout-out!) the day after to get some new curtains. And I’d paint the baseboards! And I’d write a lot! And I’d dance around the house in my underwear and tank top, catching up on tv shows and eating gallons of ice while I “recovered!”

When I woke up from surgery, I quickly realized my kick-ass recovery wouldn’t be going as planned. The simple acts of eating two saltines and walking ten feet made me vomit with enough force to flush the toilet without pressing the handle. When the nurse asked me which number face I was feeling (you know the chart: the one with ten faces listed one through ten. The ‘One’ Face looks like it’s saying, “Gosh darn it, I feel fantastic!” and the ‘Ten’ face looks like it’s saying, “Pull the Plug. Now.”) I whimpered and said, “I don’t know that I’ve ever felt a ten before. This might be a ten but I’m going to say …… seven? Eight?”

Suffice it to say, I didn’t go to Gino’s that afternoon.

I don’t remember much of the first few days, other than feeling miserable and out of it. My head, ear, and teeth pulsated with white-hot heat. My throat was so raw I could barely swallow. I could hardly stand without the room spinning and my stomach somersaulting. After a couple days of constantly sleeping on my right side (my left ear was implanted, so that side of my head was stitched and stapled and sore), my neck stiffened with so much pain that it refused to move from side to side.

Around day four, my neck and chest began to turn yellow and blue. Matt called the hospital to ask what could cause that sort of coloring and they replied that though it was unusual, it could mean that my blood was pooling downwards from my ear. Excuse-a-what did you say? Pooling? Downwards? Where’s it going? Does it have a mind of its own, like The Blob?

When Matt came home from work on Friday and asked how I was feeling, I wept. I wasn’t recovering with my expected gusto, I felt dismayed that I had to depend on drugs (tramadol) to get through the day, and I was angry that it was taking me so g.d. long to feel any semblance of normalcy.

He sat down next to me, squeezed my hand, and said, “I’m so sorry. I know what you’re going through, believe me, and it sucks. This week feels endless and you’re frustrated and tired and you’re hurting. This will be over soon, I promise. I’m so sorry I’ve had to be at work most of the week, but now it’s the weekend and I’m here for you, 100%. I love you so much. Would you like me to make you some pizza?”

Those were the EXACT words I needed to hear to get through the rest of that evening. The man makes damn good pizza.

I made Matt call the hospital again on Saturday to see if they could prescribe me muscle relaxers: I was barely getting any sleep due to the agonizing state of my neck. When Matt said that my neck was stiff, they responded that it could be a sign of meningitis, one of the risks of getting a cochlear implant. Cue the panic and googling.

After much research, I decided that I probably didn’t have meningitis (I didn’t have a fever and it didn’t hurt to touch my chin to my neck, two major signs). Because of the meningitis mention, the muscle relaxer request had been forgotten, and it was too late to call back the hospital. There was no way I could sleep another night with my neck whispering to “eeeend iiiit, eeeeeend iiiit aaaaall, Liiiiindsaaaay Jeeeeaaaan, theeeere’s sooo maaany kniiiives iiiin theee kiiiitcheeeen.” So I researched neck pain remedies.

I came across a description of a traditional Chinese method called Gua Sha, which involves repeatedly scraping lubricated skin with a blunt edge. Intrigued, I smeared jojoba oil on my neck and forced poor Matt to scrape it with the edge of a spoon until my skin turned purple (the purple marks are caused by stagnant blood rising to the surface. Google pictures at your own risk).

Guess what? I shit–pardon my French–you not, it worked. I immediately felt 1000x better and was able to move my neck in all directions with ease. I slept like a baby that night and when I woke up the next morning, I felt like a new woman. That’s when I knew that the worst was over. Each day, I’ve felt increasingly better and stronger.

A big thank you to my friends and family for their support and outreach, the kind words and flowers, the love and sympathy. And a special, dear thank you to Mattie, my loving husband, for helping me get through a rough week.

P.S. One more week before my implant gets–ahem–turned on! (Ugh. I hate that phrase so much.)

Standard
pre-op

The First Step

I burst into this world healthy, pink, and insanely adorable, only to contract a staph infection in the hospital where I was born. The medicine the doctor used to save my life destroyed the nerves in my cochlea, resulting in severe-to-profound deafness in both ears.

For those of you unfamiliar with audiology terms, there are different degrees of hearing loss: there’s normal (best), slight, mild, moderate, moderately severe, severe, and profound (worst). I’m severely deaf with certain sounds and profoundly deaf with others. So, basically, I totally blow at hearing. If there were such a thing as hearing contests, and I for some reason entered one, I’d walk away with a shame-soaked participation ribbon peeking out from my back jeans pocket.

But–I don’t give a crap about winning hearing contests. (After all, there are plenty of other hypothetical contests I’d kick ass in…. parentheses contests, for starters.) I’ve done the best I could with what I’ve had. Thanks to my parents, who sent me to a school that employed a fabulous system called Cued Speech, I was able to become quite adept at reading lips. That, along with a positive attitude, helped me get by in the hearing world. It’s not that I rejected the deaf world. I just was never around it much, mainly because of the choices my parents made for me. The hearing world was, and still is, all I’ve really known.

When I was about twelve years old, I was told by an audiologist that I’d be a good candidate for a cochlear implant and had I ever considered getting one? Um, you mean shave my hair and wear a magnet on my head? I’m about to start the seventh freaking grade–I don’t think so! ::snaps gum::

Seven years later, after I began college, another audiologist told me the same thing. No longer bogged down by teenage insecurities, I briefly considered it, but ultimately felt too overwhelmed at the prospect. I was dealing with college and the untimely death of my mother. The thought of having invasive surgery at that point in my life, not to mention the amount of therapy and hard work afterward, sounded downright terrifying. Plus I had it in my head that there’d be a cure (stem cell nerve regeneration) any day. Having a cochlear implant would mean destroying my cochlea—making any cure moot.

At the age of 26, when I first started dating my husband Matt (who is hearing), he asked me if I had ever considered an implant. I shrugged –not really. When he pressed, he quickly realized I knew next to nothing about cochlear implant technology. He knew more about it than I did after reading about it for a few days and couldn’t understand why I had never researched it. I hedged his questions with vague responses. He quickly dropped the subject, after sensing my discomfort. He didn’t want me to feel like he needed for me to “change.” He loved me the way I was.

I didn’t research cochlear implants after that conversation, despite secretly being curious. I’m not sure why. I think a part of me was scared. Scared of the surgery, scared of it not working, scared of getting an implant and finding out shortly after that there was a cure on the horizon, scared of having a magnet on my head, scared of being too old. I felt a little stubborn, too. Why did I need to hear better? Wasn’t I already doing a good job of acclimating to the hearing world?

When I was 29, I met with a new audiologist to upgrade my hearing aids. Like the previous audiologists, she told me I’d Be A Good Candidate For A Cochlear Implant. This time was different. I didn’t shrug it off. See, she was born deaf, like me, and had gotten a cochlear implant in her early thirties. And what’s more, she loved it and said it was one of the best decisions she ever made. I found her story so inspiring. This conversation planted a seed in my head that slowly sprouted over the next couple years.

A few months ago, shortly after my 32nd birthday, I met with her again for a hearing aid repair. I asked her a few questions about her implant and admitted that I had been thinking about getting one. She nodded approvingly and gave me the email address of a cochlear implant audiologist from Northwestern Hospital. I went home and stared at the email address for a long time. The first step. Was I ready to take it?

I was.

And now here I am, my head throbbing, my hair matted with blood, my eyes glazed over, my stomach in knots from vomiting repeatedly, my face bruised and puffy, my throat bloody from the tubes shoved down my throat during anesthesia—recovering from the cochlear implant surgery I underwent yesterday morning. And I’m smiling.

Standard