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.”

CBC Radio Active – Part 1

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 1 of CBC Radio Active interview with Caroline…

Ablate the what now?!

Hi, Andreas here. Time for another nerd post.

Last week was activation. It was as uneventful LOOKING as Caroline described. That doesn’t mean it wasn’t significant. There are four dates Caroline says define her life: her birthday, our wedding, implant surgery, and activation day. Frankly, I’m just happy to be in the top 3. But activation day was about hearing, not putting on a show.

From my perspective activation was a lot of waiting. I took a video camera and started it, but I shut it off after a minute. You can’t even tell when ShaSha (the audiologist) turned on the microphones for the first time. It doesn’t look like anything. It was as focused and businesslike as you could imagine. It was the opposite of every YouTube video you’ve ever seen. The audio is much better and I’m putting together a collage of the sounds of Caroline’s activation. Audio only is more appropriate for a podcast about hearing anyway.

Last week while ShaSha was briefing us on how activation would unfold, she said something I didn’t expect to hear. What she said was so unexpected it actually bounced off my skull and ricocheted off the wall and knocked over a picture on the desk. I was so surprised that I just kind of sat there. Normally I’d ask a million questions but I just had no way to process what I was being told.

What I was told is that Caroline’s implant’s electrode array had a slight biofilm on it. Sure, that makes sense. The body is trying to protect itself. No biggie right? Apparently it’s not a huge biggie, but it is a bit of a biggie. It seems that biofilm (just body slime and cell growth) impedes the electrical signals from reaching the nerves of the cochlea. The solution: ablate the electrode. You read that right: they want to burn off the biofilm on the electrode. Everyone goes through it.

“Ablate,” “cochlea” and “electrode” are all fine words. It’s just a bit disconcerting when they’re used together.

Caroline and I have had one mantra throughout her cochlear implant experience: we only things do things contribute to the best outcome. Considering the astonishing speed at which Caroline has re-learned to hear, it seems like we made good choices. Thank goodness.

We’re adapting to the world of sound. WE are. I can hear, but WE have always been hearing impaired, and now WE have a cochlear implant. I need to be as competent with Caroline’s equipment as she is so I can support her. I need to understand her new behaviors so I can get a heads up when things may go off the technological rails. I need to understand a new set of hearing issues. Now that Caroline has access to most sound, it’s not if she hears something, but if she recognizes what she hears.

Hearing impairment is invasive. That includes electrode ablation. As bad as it sounds, it’s nothing. If they didn’t tell us we’d never know. That’s because hearing impairment imposes itself on every moment of your life and especially relationships. If ablating the electrode is something that helps Caroline hear, so be it. I’ll give the final word to Caroline, who something that will inform how I think about every aspect of Caroline’s experience for the rest of our life: “I’ve been healed. I can hear. I can’t go back. Ever.”

That’s all she has to say about that.