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.

The Big Game

A friend of ours was generous enough to treat us to an Edmonton Oilers hockey game. Andreas worked at the Oilers for over a decade, and going to games became routine. There was nothing routine about last night’s game (a 7-5 loss to the Florida Panthers for anyone keeping track at home). It hasn’t been a great season for the Oilers, but it was a worse night for Mo, my cochlear implant.

I was braced for a sensory overload as we walked into the NHL’s newest state-of-the-art arena. It’s an expansive building with personality splashed on the walls with light. It’s a hockey arena. It’s what you expect one of those to be. Sadly, it was mostly an uncomfortable experience.

First, I could hear until I couldn’t. Hockey arenas are big concrete and steel echo chambers. They’re basically big Faraday cages that create a soup of radio signals. Those radio signals (from 20,000 phones, wireless networks, various telemetry gear etc) caused my remote to seize. I couldn’t turn down the volume or change programs because my remote(s) were disconnected from the processor – radio interference cut me off from controlling my processor. We had to beat a hasty retreat and found that outside of arena on the concourses, there was no problem.

I’ve had my hearing for two weeks. That’s two weeks of #deafnotdeaf and I just can’t go back. I won’t. The arena was compromising my hearing, so it was time to go. It’s not even an actual choice for me.

A few things about the arena: sustained 80dB volume level are dangerous over time. Roger’s Place It’s 60dB (normal conversation volume) when it’s quiet. That means you have to speak louder than a normal conversation to hear or be heard. The 80dB peak levels are actually dangerous over time. If you have Oilers seasons tickets for more than a decade: get your hearing checked. Seriously. It’s a hockey arena. Noise is inevitable, and I’m basically deaf so it’s not like it’s anything other than painfully uncomfortable (which it is at times – and if you’re reading this and NOT experiencing pain or discomfort, then DEFINITELY get your hearing checked).

Two other issues struck me while were there.  First, they play an in-arena game to make the building as loud as possible. Yes, noise is fun. Unfortunately, the Oilers are entertaining their fans to deaf. They should rethink that strategy. I have an expert opinion on this: deafness is not fun. My prize was a cochlear implant. It’s worth more than a box of pizza. It’s priceless.

I’m used to being deaf so the temporary confusion was horrible, but manageable. Getting in and out of the arena was…unpleasant.

Look, I get it: I have a metal implant in my head. They have security gates. They want to make sure fans attending the game are safe. Important not for future reference: CI users don’t like security gates or anything that emits radio waves. While metal detecting arches are safe to go through for regular people, they can cause serious problems (erasing your hearing program, or MAP). Then you’re deaf or suffer with screwed up hearing until you can get another (costly) appointment to reload your map. On top of that, hockey arenas probably aren’t buying the very best shielded metal detectors. The best way to avoid it is to ask for a pat-down and avoid the arch altogether. As one might expect, the security staff were clueless, but courteous. You can show them a cochlear implant, but there’s still a lot of confusion and staring. I get it. It’s unusual. I’m a cyborg. And I’m afraid someone needs to educate the security staff on how to deal with exceptional people like me. Please just let me walk AROUND the security gate. Frisk me, please…just let me keep my hearing.

I’ve been to hundreds of NHL games. It was great to be in an arena with the excitement, energy, and noise. But the noise is excessive and the energy confused my gear. I was deaf for 28 years. I’m not going to do that again for a single minute more if I don’t have to. And right now, if I want to watch hockey, I kind of have to.

My experience last night was a bit of a bummer, but hearing is too valuable to lose it even for a couple of hours of hockey. In our game of our life the score will always be:

Hockey: 0
Cochlear Implant: 1


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…