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…

The Elephant in the Room

Batteries not included.

Most of the time when you think of an elephant in the room, it’s the thing that everyone is trying to avoid. Don’t get me wrong, I’m not avoiding a cochlear implant. What I’m doing is trying to avoid thinking about surgery on Tuesday.

The thought of surgery doesn’t really bother me. I mean, it did bother me, but this morning after another emotionally wobbly, meltdown, conniption, and mild apoplectic fit, I realized I should talk myself down from the ledge I put myself on.

My self-talk these days has become very…pragmatic. For those of you following along at home, regaining one of your senses is a welcome gift – a modern miracle but I’d rather not have lost it in the first place. Even for the deaf, the climb to hearing and comprehension is daunting. I haven’t had a conversation on the phone with my husband since 2003. The last movie we saw in a theatre was “The Incredibles.” I finally figured out what it was about a week later when Andreas bought a bluray and we watched with closed captioning. Now I have to un-learn closed captioning? No one said anything about doing things the hard but better way? I like the comfortable easy way I’ve learned to cope with.

Yes. I’m having an acute case of “I want change, but I don’t want to change.” That voice appears to be disconnected from the one that wants hearing. If you’re having problems with voices, do what Oprah does: get everyone to talk it out.

My self-talk goes like this: “Caroline. Calm down. You’re going to have the most sophisticated medical hearing device on the planet installed IN YOUR HEAD because THAT’S HOW IT WORKS.” Andreas keeps saying my implant will be “installed.” I’ve failed to come up with a better word. Yes, it’s being implanted, but that’s a lyrical tautology. It’s being installed. It’s thoroughly unromantic, but it’s a great adventure.

I’d tell Isaac Asimov or Aldous Huxley what it’s like to hear like a computer hears. J.K. Rowling wouldn’t be a bad chat either – cochlear implants are kind of magical. Of course, none of these conversations would work for two reasons: 1) it would be a wasted opportunity until after activation day (Ms. Rowling, if you’re listening, come on over for a visit and we’ll talk about the magic of hearing). I’d really love that conversation with J.K. Rowling. Then again, I’d really love a conversation with anyone I could hear.

That conversation in my head comes and goes but when it’s on, it always drags on. After some introspection, worry, and self-doubt – when it’s time to attend to the world again – I just ask myself, “Can you live with a few days of discomfort to have a lifetime of hearing more.” Well, duh. Cranial neurosurgery is no match for my desire to hear more (and maybe one day, more than normal – my external processor will always be improved and upgraded). Andreas said something last night: “Your hearing will never grow old. Mine will. I may have to rely on you to hear for me one day.” For a second I thought I heard a noise from the other room – I thought I heard the tables turning.

When they say a cochlear implant is a life-changing moment, they don’t mention it changes everyone’s life around you. Thank God.