I am so tired. I’ve never been this tired.

Yes, we’re alive. I’m sorry not to have written more, but as much as we thought things felt intense and busy before, yeah, that was the training period for intensity.

It’s like this: I can hear really well. Most days I only burst into tears a half dozen times because I’ve either heard something new, regained a lost behavior (re: listening without looking), or am just overwhelmed by the immensity of what it means. We hug a lot. And by a lot I mean any time we’re standing, we’re clinging to each other. Mostly it’s joy and relief, and the remainder is confusion and “hang on for dear life” stuff.

Andreas talks about meaning a lot. He has a way of framing a topic to be understood by an audience with uncanny precision. He knows how to get people to understand. In the case of my cochlear implant, well, it kind of defies understanding. So, we’re just kind of going with it. All our normal hearing impaired behaviors now feel awkward and strange. And since that was ALL our behaviors before January 29, we’re literally re-learning how to interact. It’s awkward. It’s often funny. We talked a lot about how stressful regaining hearing feels. This is how it feels…

A thought experiment: imagine waking up completely deaf tomorrow (sorry, this thought experiment is only for the hearing – I guess the rest of you can just switch of your HA or CI until you’re done reading). Maybe you had an infection; an ear ache/headache for a couple of days. Maybe you had an infection and you were given antibiotics or are on some other medication like a blood thinner. Some drugs are “ototoxic” which means they can damage the hearing organ (organ of corti). For the sake of argument, the drugs or infection attack your inner ear and you wake up deaf. (incidentally, this does happen – and more often than you’d be comfortable with).

What happens first? First, you don’t know you’re deaf yet, it’s quiet after all. You might sneeze, sniffle, or move a little. Silence. Maybe your ears are plugged in spite of not feeling any sinus pressure. You stick your pinky finger in your ears and realize the path is clear. You also realize that sticking a finger in your ear made no noise. You call out to a loved one but you cut yourself short. You can’t hear yourself. You throw off the covers and tromp down to the kitchen. No footsteps. No booming thumps down the stairs. In the kitchen you turn on the tap…no tap noise…no familiar clink of glass. The dog meanders over and startles you because you didn’t hear her nails on the kitchen floor. She then takes off and runs to the window. Her body is convulsing and recoiling like a shotgun. Nothing. The dog is barking at a passer-by and your only cue is to look past fido. The dog quickly stops and then runs to the door and starts barking. Someone is at the door. No doorbell. Still no barking. Should you even open the door if you can’t hear. You jump out of your skin when your loved one finally pokes you in the shoulder from behind. You turn and yell. They’ve been talking for a minute but you’re not hearing it. They want to know why you’re not getting the door or answering the phone. The TV is on too loud. You’re missing text messages. If you go to work, what do you do? First thing: go to the doctor. With deference to general practitioners, most could use a refresher on hearing. The doctor grabs the otoscope – the think they stick in your ear – and she takes a look around and doesn’t see anything unusual. She sees a pink eardrum with the handle of the malleus (the hammer bone) attached to the eardrum where it’s supposed to. Everything looks fine, but you’re deaf. You go to an audiologist who then tells you, yep, you’re deaf and it’s permanent.

Here’s the short list of what changed:

  • shopping (talking to strangers)
  • entertaining (talking to friends)
  • no phone use
  • increased text/email
  • advocacy – telling people you’re hearing impaired/deaf and need their help to hear
  • Work (whatever you do, imagine doing it without hearing anything)

Holy shit is right. Now do that in reverse, and that’s been the last 9 weeks for us.

The fact is that for the last month I’ve been utterly and completely exhausted and I have no energy to do much more than talk or listen to music. My brain is in overdrive. It’s not just my speech and hearing cortex that’s waking up. My cognition – how I think – is changing. Andreas says my sense of humour is getting bigger and funnier (thank goodness he thinks I’m funny). I’ve never studied psychology, but I’d swear that being able to hear yourself talk – the self feedback loop – plays a huge role in comprehension, understanding, and synthesis of ideas. It only makes sense. It’s hard to come up with a twist on an idea if you’re working with incomplete information. But I find I come up with ideas and complete them while I’m talking. It’s probably normal, but it’s new to me (at least new enough that I can tell it’s different).

“Get some rest.”

Easy for you to say. I’ve always been a good sleeper. I can nap anytime, anywhere. It’s almost a point of pride. This kind of tired is so far beyond that it’s not even in a movie – it’s in the sequel. Exhaustion is normal after CI activation. Part of my brain has been nearly dormant for most of my life and now it’s awake. Not only are my speech and hearing centres on fire, but my brain is acquiring a new way of interpreting the world (Andreas stops when I turn to see him come into a room – it’s just completely new behavior). It might seem silly, but it’s obvious that most of our social behavior is learned. I think babies sleep 18 hours a day because they’re sponging up all kinds of information. In mid-life I’m doing in the same thing. The nice thing is, when I feel like crying I just pour myself a glass of wine and declare “quality snuggle time.” It’s a bulletproof coping mechanism (with or without the wine).

We’ve been told it takes about three months for the adrenaline to ease off and I think that may already be starting to happen. The first month was a whirlwind (seriously people, where did March go? I had a birthday in there and it’s practically the only day of the entire month that I can remember). Now, we’re beginning to re-re-emerge.

Lots of stress, but good stress. Like the spectrum that my processor, “Mo” provides me, it’s a matter of filtering out the good from the bad.

Through our exhaustion we’re still delighted with the experience. We remind ourselves that we were hoping for “good,” and we ended up with “amazeballs.”

Hearing is worth losing a little sleep over. It really is.

CBC Radio Active – Part 2

Hi, Andreas. Again.

CBC’s Radio Active co-host Rod Kurtz interviewed Caroline about her implant experience. Full disclosure, we’ve known Rod for a long time. He knew Caroline was hearing impaired, but didn’t know she is profoundly impaired (it’s fun to say she hears best out of her deaf side – with the implant). Caroline wanted her experience to not just raise awareness, but ally any fears and to provide a human perspective for something that’s rarely seen. Good job, good job.

Here’s part 2 of CBC Radio Active interview with Caroline…

Counting to Ten

I can hear.

Monday, January 29, 2018 was activation day. Andreas and I hunkered down for a quiet weekend together and mostly were just anxious about how activation would go Our first worry was that the implant would work at all. It’s not really realistic since it’s tested at the end of surgery before they closed me up. Everyone was A-OK so we really just had to wait for activation.

Andreas brought a camera to record activation but there’s no AHA moment. Those are reserved more for infants and pre-lingually deaf (deaf before learning speech). To them the sound is dramatic. Andreas missed the moment the mics were on because I was just chatting with the audiologist when she flipped the switch. It’s boring. There’s nothing to see. There’s no drama. I start hearing and then we sort of work through a process to start developing what kind of sounds I can hear. I look good in my blue dress, but really, that’s not enough for an activation video (it is a great dress and I look super cute in it though. Just sayin’).

I invited Melanie Monaghan to activation because she referred me for evaluation for the cochlear implant program. She started the life-changing ball rolling and I really wanted her to share in the moment for a couple of reasons. First, she’s become a dear friend. She is thoughtful and compassionate. Melanie is good people, and something of a deafness mama bear. Melanie lost her hearing to viral meningitis when she was two. She was Canada’s second cochlear implantee when she turned three. She’s now working in a school division helping kids with their hearing and hearing technology. The other reason was that, Melanie had never been to an activation other than her own. She knows what’s going on and she was excited to see it from the outside. Melanie explained what was happening to Andreas and he was happy for the insight because from the outside, the process is pretty boring looking.

Do you feel the tension building? No? Of course not. Because there wasn’t tension. It was very businesslike and procedural. It kind of has to be. It’s high tech after all. IN MY HEAD! I still can’t get over that.

Cochlear Kanso sound processor and a 3d model of a human inner ear for comparison.
Caroline’s Cochlear Kanso sound processor with a 3D model of an actual size inner ear/cochlea. The Kanso is just 41mm long and 13 grams.

First, my audiologist, ShaSha brought out my backpack. By “my backpack” I mean the backpack with all my batteries, accessories, cables, manuals, warranty cards, and other bits and pieces. When she opened the processor box I was stunned. I’ve seen the Cochlear Kanso a couple of times, but those were just empty demo units. It’s really impressive how small it is. It weighs 14 grams and is about the size of a stack of 5 or 6 twonies (Canadian two-dollar coins). It’s small and off the ear and I love love love love it.

I choose black because flexibility counts. It’s so small and discrete it’s actually hard to see. We went to Thanh Thanh on Tuesday because after every milestone day we go to Thanh Thanh. They’re closed Mondays so we went Tuesday. Because that was information you needed to cope with your day. Anyway, we showed off my Kanso to the staff. We had to grab a flashlight, but the black just absorbs light, so I had to take it off. I seriously need to get myself a dummy model or a blank or print a 3D model so I don’t have to go deaf every time I want to show someone. Which brings us to actual activation.

First, ShaSha connected the processor to a computer and placed the Kanso on my receiver coil. It took a minute to find. I’m still learning. Andreas gets it every time.

Testing and calibrating the processor took a few minutes. There was a graph that was supposed to take a certain shape. If it wasn’t that shape thre might be a problem ( couldn’t tell you why, I should ask Andreas). One the tech test passed with flying colours, ShaSha tested the electrodes with a series of beeps. I wouldn’t call them beeps then, more like whooses of sound. Three days later I think I’d probably hear tones.

Then ShaSha opened the microphones.

The first sounds werenn’t natural, but I didn’t find what I heard unpleasant. I was making the connection between an action and a sound (clapping for instance). That was a good early test. Loud sounds weren’t bad either but I was really struggling to get past the warbling whoosing wall of sound I was hearing. I couldn’t recognize anything. Then something happened. ShaSha just said, “Let’s try counting to ten.” The phrase itself was a mass of jumbled noise. Then…

“One….two….three….four…five…six…seven…eight…nine….ten.” It sounds like “WHOOSHalkdjfalsjdfalj;dWHARBLE..alsdkjfaljdfWEFLKWJEFLEJKFadfjaskjWARBLE…etc” I ca say it was like noise but obviously more organized. I immediately had the sense I would be able to understand it, but I just didn’t know HOW what i was hearing was organized. When ShaSha finished the first ten, she started over.

“One…two…three…four…five…” and then dawn cracked on the number six. I heard the shape of the word SIX. Not the word six, but I could recognize that I was supposed to be hearing SIX – I could tell there was something there organized and it correlated to SIX. If that makes any sense. I can only describe it like one of those 3D optical illusions. If you shift your vision in one direction it becomes a coherent picture…move just slightly in any direction and it’s gone. That’s what it’s still like. I have to really listen consciously to shift what part of the audio spectrum I’m focused on…the detail of the sound sort of comes in and out of focus.

By the time ShaSha counted through “seven, eight, nine, ten….one…two…THREE I HEAR THREE!! FOUR! FIVE! YOU JUST SAID SIX! I HEAR YOU! OH MY GOD I CAN HEAR YOU. YOU SOUND BETTER WITH EVERY WORD! WHAT’S THAT NOISE? IS THAT YOU? IT”S SOMEONE IN THE HALLWAY?  I CAN HEAR OUTSIDE THE ROOM?!” My heart was pounding and I stayed focused on my tasks and tests. My brain was so fascinated by the new relationship to sound that I just never broke stride. “Exceeded expectations” was the note on my activation form. Indeed.

My activation day was a “golden ticket” moment. I’m Charlie, and hearing is my chocolate factory. I’ve spent who knows how much energy trying NOT to hope for the activation day I just had. It’s the thing you hope for but dare not expect. One Facebook implantee told us he just heard lyrics in a song for the first time in sixteen years. I heard Michael Jackson singing “Billie Jean” yesterday, the day after activation. Tonight I heard “You Spin Me ‘Round” (Yes, 80’s tunes because they’re emblazoned in my teenage memory, I could still hear them, and I listened to them over and over and over – 80’s tunes are perfect generation X rehab fodder.

FAVOURITE SOUNDS: my titanium Medic Alert bracelet. It’s a pleasant jingle.

FAVOURITE VOIDE: I’ve started to hear Andreas’ voice the way I always remember hearing it. Full of character. It didn’t start that way, but by the end of the day on Tuesday, I could. He sounds all warbly and washy if I lose focus or am tired. Amazeballs.

All that said, I have a long way to go to even better hearing. There’s a ton of work to do, but it’s interesting and fun if you’re open to it. Tonight we sat on the kitchen floor for an hour and banged pots, the floor, the dishwasher, counter, and various trays and cutting boards with drum sticks. Andreas just tapped away on a wood cutting board…tap tap tap tap tap…then a metal cookie tray…bang bang bang bang bang…and back and forth for ten minutes. At the start the cutting board and cookie tray banging sounded the same to me. By the end, I “had” those sounds. This is all day every day. Andreas is amazing. He’s as motivated as I am for my hearing and I’m so grateful.

I’ve worn a pair of hearing aids at work, with friends, mountain biking, sea kayaking, shopping, even sleeping sometimes to wake at a noise (it never worked) all day, every day for the last 27 years. Yesterday, two days after activation I retired my hearing aids. Today is the second day I’m going full cyborg. It’s simply a better way to hear.

I’m still going to do a lot of listening rehab, but the really ugly hard grunt work of filtering through all that wash of sound and picking out something is done. My brain did it for me. Thank you brain. Good job. Take 8 hours and then we’re back at it tomorrow, because I’m so ready to hear more.