Regina's Cochlear Implant Diary

29 May 2015 [Regina’s public announcement on Facebook]

Got the official approval: Next week I’m having cochlear implant surgery! It’s a big step. After years of bluffing and faking it, hiding exactly how difficult it’s been to function in the hearing world and how much worse it’s gotten (and not fully understanding it, really), I’m finally ready to gamble on this. Some people see it as a disfigurement, others unrealistically as a miracle cure – but for me I’m expecting it to make my life more … interesting. A hunk of computer embedded in my skull zapping my brain with electricity thousands of times per second? Oh boy FUN.

There’s a good chance that surgery will wipe out all the good hearing that I have now in that ear – so it kind of feels like risking my high-quality bass-only speakers in exchange for ones that are low fidelity but cover a broader range of tones. But, hey. After months and maybe years of tough rehab I hope my brain will figure out what to do with all the zaps and let me “hear” things I’ve never heard before – like songbirds and cats purring, fire alarms and tea kettles, and what the word “shit” really sounds like (and most importantly, that 80%+ of speech that I can’t hear now).

3 June 2015 [the day of the operation]

I feel like today’s operating room could benefit from a little ceremony. “I, Regina Lorraine Nuzzo, take thee, Tiny Brain Computer, to be my surgically embedded chip, to have and to hear, from this audiogram forward, in silence and in noise, for vowels and for consonants, …” Yeah?

23 June 2015 [The day of activation]

Headed into NYC now! Today’s finally the day – after three long and frustrating weeks – that Tiny Brain Computer and I consummate our union! Activation blast-off: 1 pm. All is not completely happy in the cochlear hinterlands, though. Apparently my inflammatory cytokines have been hard at work freaking out about the hunk of metal now occupying my inner ear. It doesn’t look like I have much residual hearing left. Not good. We’ll know more today. No idea what to expect when they flip the switch. It’ll be zapping parts of my auditory nerve that haven’t been touched in decades – or ever at all. Is anything still alive in there? Some newly activated people hear nothing but beeps, whistles, shrieking. Also popular: everyone sounds like Donald Duck, Minnie Mouse, or Darth Vader. Wish I could choose my own fictional character to populate the world.

Luckily I brought along a bona fide expert on all this, Michael Chorost. Yesterday he patiently drew diagrams to help me understand exactly why he might soon sound to me like Mickey Mouse. It’s kind of cool. He also said, “I can tell you’re going to science the shit out of this.” Hope so! Going to be a long but interesting rehab. Wish me luck and lots of pretty beeps!

24 June 2015 [The day after activation]

Observations from a day-old cyborg:

  1. There are many more things that make sound in the world than I had ever dreamed of.
  2. Everything is frequency-shifted upward. Lots of bells. Knock my knuckles on the table? Sounds like a squeeze toy. Burly guy laughing on the train? Tinkerbell. My other ear, which still hears some low frequencies, is very puzzled.
  3. Interleaved with the bells are not sounds, but more like metaphors of sounds. Synesthesia, almost. When my audiologist activated the outermost electrodes – the ones that control the highest frequencies – I heard silence. But I felt it in my head. Bright, painful, blank nothingness. Thin, white beams of light. Sharp icicles jabbing me in the brain. Those white starbursts over the heads of cartoon superheroes fighting. I think these are the pitches I’ve never heard before. Is this what virgin, untouched auditory nerve fibers do when they warm up? Or what half-dead ones do? No idea.
  4. It’s eerie to have the silent lightning bolts in my head be in synchrony with the outside world. My audiologist tells me she’s making an “ssss” sound, and at the same time I’m feeling a thin white string of light being threaded through my temple. “Sshhh” is a sandpapery sheet of ice. Crumpled tissue paper was a giant explosion of silence that shook the inside of my skull. Raindrops on the sunroof of a car were staccato brain tickles. Feels like the world is communicating in coded mental telepathy. Or like if you realized that if you were to concentrate really hard you could taste infrared light.
  5. The silent sounds are viscerally unsettling. In some noisy situations I can’t actually hear anything. But I can feel the waves of white silence crashing around. My heart starts pounding. My logical brain knows what is going on and thinks it’s cool. But I think that underneath that there’s a reptilian brain running around yelling, “Danger, danger, something weird is going on, get ready to run like hell.”
  6. Where am I hearing/feeling these sounds? The silent explosions are on the implanted side of my head only. Not on the other side, and not in my ear. More like my right temple and behind my right eye. Why there? No clue.
  7. Statistics for simple words today! CI only: 1 out of 10 on the first guess. Unimplanted ear only: 36%. Both together: 48%. I have no idea how they worked together. It was like deciphering alien speech. Still a long way from understanding a sentence.
  8. Music sounds like shit. Doesn’t even sound like music. More like aliens having a huge bells-and-silent-fireworks party in my head. Wheeee.

29 June 2015 [One week after activation]

Nearing the end of my first week as a cyborg! And with it another numbered list.

  1. Having brain nerves suddenly zapped with electricity thousands of times per second is exhausting work, even if you’re just sitting there. We’re talking multiple naps per day – plus major pizza cravings. Started and stopped this post so many times because I couldn’t keep my eyes open.
  2. I’m becoming a volume junkie. Loudness levels that were pure torture a week ago are now boringly soft. I think it’s like spicy food. When you’re a kid, a bit of chili powder is enough to make you start crying and spit it out. But once you’re used to it, the pain is kind of exciting, and you crave the pure sensory overload. Yes, please, more pain!
  3. Favorite new sound: women’s heels going clackety clack. Way more powerful than they look. Tiny bright firecrackers with every step.
  4. The bells are disappearing. (Bye-bye, Tinkerbell! I’ll miss you!) The implant’s sounds-to-electrode mapping hasn’t changed – so it must be my brain that has. So cool. Frequencies are shifting down a little bit every day. Maybe it’s peer pressure from my unimplanted ear, which knows low frequencies quite well, telling the auditory cortex on the other side to get its act together. Now voices are like robots in a tin can, or comical whispering poltergeists in a low-budget B movie – raspy sounds that are all edges and right angles but no round middles. Bright white and shiny chrome, without much color. Anne Hathaway reading “The Wizard of Oz” on my Kindle doesn’t sound like Anne Hathaway, or a woman, or even human. Still can’t understand any actual words.
  5. The silent lightning bolts haven’t budged. With a nifty iPhone app I found the pitch at which input changes rather suddenly from “comical sounds that at least sound like sound” to “painful silent piercings in my skull.” (They start at about 1.75 kHz – almost three octaves above middle C. My electrodes top out at 8 kHz. That’s a lot of lightning bolts.) Synesthesia is still there. “Ssss” = skinny white thread. “Ssshh” = robust, sandpapery sheet of ice. “Ffffff” is harder to catch, but I’m getting something like a thin, furry rug.
  6. If someone wanted to mug me right now, they wouldn’t need a gun, knife, or taser. To incapacitate me they’d just need to crumple some tissue paper in the general direction of my ear. That stuff is deadly.

From the comments section

  • Regina answering Mary: Some deafies are lucky because through hearing aids they’ve had exposure to lots of pitches, so those brain areas are already awake. I didn’t have that, unfortunately. So my brain literally isn’t hearing all those new sounds – it’s feeling most of them as silent lightning bolts. Maybe those parts of my brain have been remapped, or they’re in a coma, or whatever. My audiologist told me yesterday that some people with long-standing profound deafness like mine are eventually able to hear the new sounds, but others are never able to. (Years ago I wrote for Rosie about a guy who had his foot amputated and afterwards felt his orgasms in his phantom foot – possibly because the dormant “foot” part of his brain was remapped by the neighboring “penis” part of his brain. I am sad to report that the high-pitches part of my brain has not in fact been colonized by the pelvic regions.)

  • Regina answering Hua: I hope so! Right now it’s a huge step backwards in intelligibility and energy. But I hope it will eventually be two steps forward. I’m giving it a good two years before I give up.

  • Regina answering Doug: Great points, Doug! I’m still chasing down some information about why I’m feeling lightning bolts instead of sounds. My audiologist said that people with long-standing deafness sometimes move on from just perceiving sounds to hearing them, while others never change. I’m curious about which I’ll get – and if I do hear them, whether all the high pitches will start to come into focus at once, or if I’ll hear the lowest one first, and then the next highest, and the next highest after that.

2 July 2015

I’ve discovered music! Well, a version of music, at any rate. It’s not anything that hearing people would recognize as such. In just the cochlear-implanted ear, music still sounds like shit, but I decided to try an experiment: what if I used my Bose headphones to give acoustic bass in the natural left ear, and a bunch of poltergeists and lightning bolts in my implanted right ear? Add a Pandora station full of oldies from the 60s, 70s, and 80s – songs familiar from sheer repetition, and so easier to decode – and what would happen? Some observations of this experiment-in-progress:

  1. First up on the random queue: the Beatles’ “A Day in the Life.” Nothing but a jumble of sensations at first. Natural ear was not getting along with Tiny Brain Computer ear at all. But then at the end there was that famous chord. And somehow it all came together. It floored me. This was so much more complex than I’d ever heard before! Extra layers and embellishments. And lasting surprisingly long. I’d always thought that the song just faded out into a long, dramatic silence. Oops. Apparently there were actual interesting sounds there. Who knew? (I find myself saying that a lot these days.)
  2. Next, Pandora gave me Joan Jett’s “I Love Rock and Roll.” Fun extra percussion-y things! Clapped hands, perhaps? Still jumbled, but by now I was starting to get the hang of parsing things. Then I got John Lennon’s “Imagine.” It was amazing. I actually started to get teary and choked up. Cheesy, I know, but it was just so light and bright with the extra sounds and silent lightning bolts. Apparently what I had been hearing all my life with my narrow range of sounds were only the round, mushy earth tones. Now the song had sharp, shiny highlights everywhere – like someone had polished it up, and now it reflected light from gleaming new corners and edges. I never thought before that music was boring. But now I was struck by just how damn pretty this new stuff was.
  3. Then I got that silly 80s dance mix “What Is Love” by Haddaway. (I think SNL did a skit with it?) Here I really started to cry. Which is downright ridiculous. But I was captivated by that stupid song. The highlights and lightning bolts were weaving new patterns I didn’t know existed! (What are they called – melodies? Do silly dance songs have melodies?) There was so much brightness and complexity to take in. It was like running a decoder pen over a picture with invisible ink and seeing extra designs and curlicues suddenly appear. Magic. I had no idea music could be like this.
  4. There’s been lots of listening since then. I’m happy to report that “Hey Mickey” sounds just as silly with the new sounds as it did before. And “Another Brick in the Wall” sounds even trippier.
  5. My new favorite sound: snare drums. They sound like exclamation points.
  6. Next sounds I’m trying to detect: high hats and cymbals. When I was a kid I was convinced that cymbals didn’t actually make a noise – that their purpose for existence was to be pretty and shiny. And, strangely, to give the drummers something to do with their arms in between hitting the drums.

8 July 2015 [Two weeks after activation]

A two-week-old cyborg enters the world:

  1. I now have emergency-vehicle ESP. That’s what it feels like when I sense sirens wailing down the busy city street outside my apartment before they become audible. First I perk up for no discernable reason – sensing a disturbance in the Force, perhaps – then several seconds later I detect a siren. Those high-frequency lightning bolts may be silent, but they’re still useful. (No ability to bend spoons or predict the stock market yet.)
  2. Donald Duck is in the house! Whispering-poltergeist voices have given way to soft nasal quackings. Although this is a step in the right direction of frequency remapping in my brain, I can’t really say that this is a total quality-of-life improvement. Quackawackawackywack.
  3. Tiny Brain Computer ear (which I’m naming “Tiny”) and Natural ear (“Tubby”) are starting to get along. Sounds through each ear no longer seem as if they’re originating from different planets. Now it’s same planet, different continents. First I get the familiar sounds through Tubby, and then after what feels like a fraction of a second later, almost like an afterthought, my brain remembers to recognize the tinny sounds from Tiny. Those high pitches are edging everything with pretty chrome and brass and bright icy white.
  4. I’m deep into alien cryptography these days. For example: I still can’t hear the difference between “ooo” and “eeee” sounds. “Tomb” and “team” sound exactly alike. My auditory rehab therapist explained this is because they both share the first two sound layers (formants), but that the “eeee” has a third layer on top that is in my never-heard-before lightning-bolt range. After a lot of practice, though, I discovered that if I concentrate hard enough, I can sense the lightning bolts in the “eeee” vowel. So now when I’m listening to words, I “feel” for sounds. If I catch “Loooo” with extra lightning bolts on top, I can deduce the guy’s name is really “Lee” instead of “Lou.”
  5. I’m also putting my phonesthesia to good use as I teach my brain how to hear consonants for the first time. In my new auditory codebook, RiiiThinSharpThread = Rice. RaaaRoughWideIceberg = Rash. BiiiiTinyBrightFirecracker = Bite. Aaaa*ThinFurryRug*riii*BiggerRougherFirecracker*aaa = Africa. So I finally know what “shit” sound-feels like: Iceberg-iiih-TinyFirecracker!
  6. Speaking of which, the “bouba-kiki” effect is kind of cool. Across cultures and ages, people associate the sounds in “booo-bah” with round shapes and those in “keh-keee” with pointy ones, researchers have found. So maybe everyone has some degree of phonesthesia already built in. *PointyRoughFirecracker*oool!
  7. Peeing in a toilet in an echoey restroom: Oh my god.

4 August 2015 6:30pm [Six weeks after activation]

Almost six weeks of living the ultra-glamorous cyborg life!

  1. Lately I’ve been feeling like those dogs on YouTube clips, the ones who pass a bit of intestinal gas and startle themselves into wide-eyed terror at this new, unknown threat. No GI distress with me, though – just sounds. Walking down hallways I’ll suddenly jump out of my skin at a piercing noise and look around in alarm, only to realize that I’d simply jangled my keys. Never sensed that sound before! Other similarly harrowing sounds that have turned out to be of my own doing: sizzling onions in a skillet, opening squeaky doors, sucking my teeth, and doing anything at all with paper.
  2. Voices sound humanoid now! Like everyone is pinching their noses, but recognizably in the human species. Listening to Anne Hathaway read “The Wizard of Oz” I can pick out some accents she’s using. Individual words still aren’t easy, but it’s fun hearing Oz as a Nebraskan hayseed.
  3. News flash: Apparently I’m not the only one who gets silent lightning bolts. (Thank you, PubMed.) It’s called “cross-modal somatosensory phenomena,” and it seems to happen only to implanted adults who didn’t get to hear enough sounds when their brains were still young and malleable. The thing is that the brain doesn’t like to let valuable unused real estate go to waste, and so it probably rewires those unstimulated auditory areas for other tasks – like vision and, strangely enough, for the cranial nerves. No one really knows why the brain likes to pair up “hearing” with “feeling things inside your head,” but it’s an evolutionarily ancient combination, leading to some cool auditory-tactile illusions even for normal people, like being able to hear phantom sounds just by manipulating your head muscles, or making your skin feel smoother by listening to certain sounds. (No, really.)
  4. People who get the silent lightning bolts also do far worse with their implants on average, though. Very depressing. It’s because it take more effort to make your brain malleable and rewire it correctly when you’re in your crusty adult years. Sigh. So I’ve redoubled my efforts to be more neurally plastic. Research suggests lots of brain training and extra aerobic exercise are important. Solution: I’m doing my auditory rehab while I’m on the treadmill. (PSA: This unwanted rewiring can also happen in a smaller way when you lose even a tiny bit of your hearing as an adult. And it’s just as hard to undo. So, A: go to the gym, and B: get your hearing checked often.)

5 August 2015 - 7 June 2017

Two years this month since Tiny Brain Computer and I were hooked up. I’m a cyborg toddler! Here is a selection of previously unpublished observations looking back over the past two years:

The world is still an amazingly noisy place. But also it’s a much more active, physical, enveloping world than it was before. It’s neat how the sense of hearing is like a remote alert system, an alien communication signal letting you know that some kind of action just happened somewhere around you. Someone clinks a fork against a glass, and a “sound” appears inside my brain. I never stopped to think about how something needs to happen to make a sound – a collision, a friction, a little bit of violence between two objects. A fork just lying on the table doesn’t make a noise. Someone needs to pick it up and strike it against the water glass. The other senses don’t work that way – with a motionless fork you can still see it, taste it, smell it, or feel it. Sound is active physical confrontation personified.

The way things sound to me has been constantly changing. But trying to notice the changes is like trying to watch grass grow. I used to imagine that if I paid enough attention then I could catch the tiny differences in my perception every day, and watch the sound change gradually over time. It turns out that it feels more sudden than gradual. For example, one day I was listening to “Blackbird” by the Beatles and suddenly there were little bird tweety sounds in the song that I’d never heard before. The previous week they weren’t there. Then they were there clear as day, impossible to ignore. How did that happen? It’s like sounds just emerge out of the mist until they cross some kind of perception threshold and get my attention, and then it’s like, “Oh, hello there, brand-new sound in the world.” So when I hear something new or different I don’t always see it coming – often it feels like a surprise out of the blue.

I need to keep reminding myself it really is all in my head. Example: one day the beeps from the buttons on my microwave sounded strange. I’d heard the beeps since I was implanted, but now they were so different I thought maybe my microwave was dying. I made a friend listen to the beeps as I held up phone up and hit buttons over and over. No, he said, they sounded normal. It’s just my brain that’s different. But it always feels like the world is what’s changed, not me. I know I’m the one with a hunk of computer in my head, and that my neurons are making new connections every day, and that alters the way sounds actually sound to me. My egotistical mind isn’t convinced, though. Its storyline is more like: The me doing the listening is the same me as yesterday, so if something sounds different it must be a change “out there,” not “in here.” Kind of trippy to experience reality that way.

New sounds don’t appear quite as tidily as I had hoped. After surgery, I wondered how I would start to hear the new sounds. Would they appear in order like they do on a piano, with lower pitched sounds arising first, and then the next higher-pitched after that, and so on, n, n+1, n+2 … ? Mathematically that would have been nice. But it’s more like the new sounds started to appear from the inside out. First they were just smears of sensation. The first time I could hear birds it was weird – they were something that wasn’t like all the other somethings I was hearing, but they felt like a fleeting impression from a dream, broad brushstrokes of sensation with no shape or definition or “soundness” to them. I said to myself, “I think I hear birds!” and again called a friend to hold the phone up to the tree to verify. How can you only think you hear something, not know it? When your brain can’t tell the difference between figments of your imagination and reality. Then over time the bird sound-sensations started to acquire some edges, with a beginning and end. They were clearly real but were just the outline of a sound, a rough sketch. Next the twitters and calls started to take shape, with the sound outlines getting sharper and the sound-sensation taking on a bit more heft and solidity. New sounds are still filling in, like a sketch turning into a painting.

Learning how to hear new sounds takes a lot of relaxed concentration. Hard zen work. I do a game where I listen to a word spoken against a hubbub of background noise and guess what it is. Tap? Pat? Sack? I play it over and over, trying to figure out what those edges of the words are, the new-to-me consonants. If I listen it without paying much attention, all I might hear is “aa,” because that’s all I was able to hear before. If I instead concentrate as hard as I can – and this was my strategy at first, clenching jaw and fists, trying to will those consonants into existence – it’s almost worse. Yes, the edges of the words start to appear, but I have no idea what letters they represent. My brain second-guesses and then exhausts itself, and I get nowhere. But what if I give up trying to force the consonants out of hiding and wait for the sounds to come to me? I clear my mind, play the word again, and try to just experience it like I’m waiting for an alien telepathic message. Ignore the obvious “aaa” sound – can I feel any sensations hiding behind that? What do they feel like? What’s their texture? What word is my subconscious suggesting as an answer? OK, let’s try Pat. Amazingly, I get it right much more often this way. But it’s hard work to get that balance of paying attention but not too much attention, waiting quietly for the unexpected without getting bored and distracted.

I need a lot of sleep. A LOT. When I don’t get enough sleep, things that I could understand just the day before can end up sounding like a smeared, cacophonous mess. I wish I were five again, with lovely malleable brain. Research is starting to explore adult neural plasticity, and it’s not as hopeless as it seems. Inspired by some of those findings, I’m doing a few things to try to make these old neurons more plastic: lots of cardiovascular exercise and brain training every day (walk 4.5 miles to work while listening to podcasts, books, and bad 80s music), inventing brain games for myself that require my attention and give me little rewards when I get something right (learning simple melodies on the piano and making up ridiculous lyrics[“Brother Neurons, Brother Neurons, are you sleeping?” Or picture Judy Garland singing “Somewhere Far Up the Keyboard Near High C”]; a JavaScript frequency-discrimination game I called “Neural Crossfit WoD”), and of course sleeping a lot. Apparently some research suggests I should also be taking amphetamines, but I’m going to hold off on acquiring a meth habit for now.

New sounds come and go. Progress isn’t linear. On Monday I’ll do an amazing job on my word-in-noise game and everything will sound so clear and perfect, and I’ll think, “Well, I rocked that, it’ll be smooth sailing here on out, no problem.” And then of course on Tuesday the exact same words will be a muddled ugly mess, and I’ll wonder if my computer app is playing tricks on me, or maybe who came into my head overnight and trashed all my neurons.

My brain doesn’t quite believe in some of the new sounds yet. It feels like I achieve something physically impossible when I get out my piano app and play all the notes in order, starting from the first octave and moving up. When I reach the sounds that are relatively new to me, starting around G6, they come with a huge sense of tension, because it feels impossible that any more sounds could exist higher this seemingly amazingly high sound. And yet there’s another note above it that I play, and another, and another, and it feels like my brain might explode from incredulity. It’s like the new sounds feel both natural and startling at the same time. Imagine you could suddenly hear ultrasound. In one sense it would feel natural because it’s simply a higher pitch along the same continuum you already know, but at the same time, it would be like, whoa, THAT’S new.

“Sssssss” is one of those unbelievable, new sounds – so unbelievable that in my brain it’s still not even a sound. Lightning bolts: a bizarre sensation that’s part tactile, part visual. All those highest pitched sounds are completely non-audible. When I hit the 8th octave as I play scales on my piano app, the sounds immediately drop off into silence (8C, if that means anything to you) and are replaced with dizzying bright flashes of sensation. I know what sounds should sound like, and these aren’t sounds. They don’t even seem to be stored as sounds. For example, even after two years of encountering “ssssss” I still can’t remember it and call it to mind as a sound. Try it yourself – try to bring a remembered “sssss” sound to mind. You can remember-hear it, right? When I think of the sounds of “oh” or “bab” (sounds I could hear before) I can bring them to mind as an auditory memory echoing in my head. But not “sssss.” It’s like my brain is filing those super high pitches in the tactile or sight drawers, not the sound drawer.

Maybe these lightning bolts are a type of phonesthesia? Or maybe my brain just looks for sensory metaphors as a way of handling these sounds in the only way it knows how? Most people think of high pitches as bright, small, and sharp, so these cross-sensory mappings aren’t arbitrary; they must be innate somehow. But why? Fascinating. Take “ssssss” and subtract the actual sound – what do you have left? What I’ve got is a needle of brightness piercing my head. The staccato of high-pitched bird twittering – that’s pop-rock-candy bits of light exploding in my brain. (It always feels like it’s in my head, never out there in the world.) The long screech of city bus brakes is a wave of whiteness that feels like I’m on a roller coaster car that’s just dropped off a ledge. Yes, that feels as bad as it seems. I hate bus brakes with a passion.

Before the implant I never remember perceiving music or sounds in a visual way. But now everything I hear, even the sounds that my brain isn’t scrambling as lightning bolts, feels vaguely visual and textural. I do a lot of listening to music, podcasts, and movies now, using special technology that streams the sounds straight to my implant, so the sound quality is really good. I can focus on deciphering the words, or I can take a mental step back and let the sounds wash over my brain. When I do that, crisp voices strike me as cool refreshing breezes blowing through my head on top of the sounds. Old 80s pop songs feel like they’ve been polished up, with bright shiny sharp edges outlining all the muddy bass notes I was hearing before. S’s and SH’s become silent little sparkles on top of the words. I think neuroscientists would call this maladaptive compensatory plasticity, a brain remapping in my childhood that was helpful then but a hindrance now. That seems so negative, though. Although I wish I could actually hear all the sounds as normal sounds, it’s still kind of fun. I hope that even after my mind gets better acquainted with Tiny Brain Computer I still can remember how to experience soundscapes in this multisensory way.