It’s Like Waking Up

Where has the time gone? It’s been way too long since we recorded a podcast, but that’s on the schedule for this weekend. Finally. We’ve probably lost followers as a result of seeming inactive. The truth is, it’s been a whirlwind since activation. I’m still exhausted because hearing with a CI takes concentration, and I have really good concentration. The downside is I feel guilty because I’m not good company since I fall asleep shortly after dinner. The first few months I couldn’t sleep for hearing, and now I can’t stay awake. And this is normal. Everyone tells the same story: it’s like waking up.

So firstly, Andreas says I broke the podcast. The whole idea of My Beautiful Cyborg was backed by ideas like “This is what hope sounds like” and “A journey back to hearing.” Except my journey lasted to the sidewalk, and then I found myself in orbit around the moon. My audiologist said, “Some people walk, some people drive, and Caroline takes a rocket to the moon.” So yeah. My rehab has been unusual in that it was unnecessary. There were a few days and banging on pots and pans, and now and again I need to focus to recognize a sound, especially new sounds. But mostly, I just hear.

I’ve called homecare for my Mom in Ontario, I’ve made arrangements with an insurance agency, and I’ve called to make appointments….all on the phone. That’s a first in 15 years. Phone audio is bad for the hearing, so imagine hearing that garbled digital blech, and then feed it through my processor. Sometimes, noise is just noise. Everything is changing.

The last podcast we recorded was with the Honourable Sarah Hoffman, Minister of Health (and Deputy Premier) of Alberta. On Wednesday, Andreas and I went to the Alberta Legislature to be welcomed in the House. That means we had another short visit with the minister (and I said thank you for my CI, again), and then as sort of a “you’re welcome,” the Minister introduced us and acknowledged us as a nod to May as Hearing Month. So that happened. It’s important for official acknowledgements of the hard of hearing and hearing impaired. Minister Hoffman gets it, and for that we’re simply grateful – you don’t have to explain much for a simple reason: she has a family member who has hearing loss.

Hearing loss is invisible, but it isn’t abstract. It has tangible negative effects that you probably won’t recognize even if you know them – because we’re only realizing how bad my hearing was now that I have it back. The comparison is stark.

Then, a couple of weeks ago and bumped into an audiologist from Cochlear who said, yeah, my “rehab” is kind of astounding. Which is to say, I just hear. It’s not normal, but it’s a really good not normal. I feel like I won the lottery. In truth, I kind of did. My experience is way out of hte ordinary. It also provides an extraordinary if not unique opportunity to tell the hearing story. The truth is, I’m probably the perfect hearing teacher. I’ve adopted the monicker of #deafnotdeaf. I’m definitely deaf, but I’m not deaf with my CI. And I know what it is to lose your hearing completely. I do it every night before bed. And every morning I wake up and I can hear. THAT is extraordinary.

We’re restarting My Beautiful Cyborg – a sort of second season. We’ve been talking (a lot) and planning (not quite as much) and thinking (even more than talking) about how to tell the story of hearing and hearing loss from a perspective people will understand.

Coming Soon: My Beautiful Cyborg: A Love Story About Hearing

ZZZZzzzzz Part the Second

This is part two of my ZZZZzzzz entry. I simply cannot get over how tired I am.

Before activation I trolled message boards for advice like everyone else. I asked everyone I know with a Cochlear Implant (CI) what to expect. “You’ll be tired.” Yeah yeah, what else. “That’s it.”

They weren’t wrong. Seriously. After basically taking a thirty-year nap, my speech centres are awake, keeping the rest of my brain awake, and they just never want to sleep. Okay, everyone gets it: hearing take effort and if you’re out of practice, it’s exhausting. Yeah, fine. Good good. I get it.

What I didn’t get was just how comprehensive all the changes would be. I mean, it’s once thing to just casually go to the store, buy something, check out, and NOT have it take ten minutes of awkward misunderstood conversion to figure out she said, “Do you have a nickel?” I do that all the time now, but it’s a still a thrill every time. It’s more than that though.

You’ll notice that we haven’t recorded a podcast in a while. Well, there are good reasons for that. My Beautiful Cyborg was originally, “This is what hope sounds like: a journey back to hearing.” Well, I covered what was supposed to be a few grueling months followed by a lot of effort for a couple of years to hear normally. Months and years is the usual measurement. I was done in four days.

Yes, I’m not kidding.Four days after activation I was done rehabbing in any kind of formal way. Which is to say, I didn’t do any rehab in the normal sense. So, that kind of cuts short the idea of following progress slowly over the course of months and years.

Instead, we’ve finally come to the decision to keep going with a new post-hope version of My Beautiful Cyborg. We’re calling it “My Beautiful Cyborg: A Love Story About Hearing.” Because, I love my hearing, I love to hear, and I want everyone to appreciate how special it is. Because you don’t ever ever ever ever want to be in a position where you have to say, “You were right,” because you’ve lost some hearing.

This “new season” of My Beautiful Cyborg is going to focus on OUR hearing, yours and mine. We’re going to explore sound and hearing, and we’re going to have some fun with sound too.

We’re going to be back online in a couple of weeks. Because we’re post-hope. I CAN hear. I still can’t write that without tears. But to that Andreas always says, “Rain sounds beautiful. Let it rain.”

ZZZZzzzzzzzz

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.