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.

It’s Cyborg Eve

We just posted episode 6 of the podcast. It was one of the hardest episodes to record because, as you can imagine, things get emotional in the days leading up to surgery. There’s no need to regurgitate the “life changing” hyperbole. It’s background noise, but it creeps up. Expectation management is important when we haven’t even had surgery yet.

The call came today at 4:23pm. The caller identified herself as the admissions department from the Royal Alexandra Hospital, and could she please speak with Caroline. I identified myself as Caroline’s telephone ears and we were promptly given the “what time to be where” drill. Caroline has packed her bag. It’s a single night stay overnight. Just a precaution for observation. In a lot of places cochlear implant surgery is day surgery. Caroline is very happy for the extra care. For one, it’s peace of mind. Second, she sleeps like a rock so where she is may as well be a hospital for a night.

Always calm and collected, my chicken scratch took a bit of a desperate turn, and I even scheduled Caroline’s surgery 12 hours after her arrival in hospital. Erg.

A well-timed and welcome surprise arrived in the mailbox today. It was was more step in the “this is getting real” marathon leading to tomorrow. It was Caroline’s new MedicAlert bracelet.

For the initiated, MedicAlert provides a critical information service. Caroline has a bracelet with her condition (right side cochlear implant (tomorrow), and left side hearing aid). There’s a phone number that first responders and hospitals can call to deal with specific information, history, medical contacts, family contacts, and so on. In the case of a cochlear implant, there are specific rules about whether or not you can get an MRI with your magnet (which keeps the processor in place). Certain strength MRI machines require the magent out, which means a very simple procedure to take it out and then put it back in after the surgery (but there’s even a cleaning protocol before you put it back in).

Titanium…it’s so light! I know I go on about it, but honestly…

Cochlear implants, like other medical conditions, are complicated. MedicAlert is just common sense. And the bracelet is so light. Yeah yeah, I kind of go on about it in episode 6 but seriously, that titanium is light like cheap costume jewelery, but strong like…titanium. Caroline’s implant also contains titanium, so that’s fun.

Final word goes to Caroline:To my family and friends and new online friends and followers: Thank you for you support and encouragement! I’ve had some amazing opportunities and adventures in my life. Nothing compares to this. Nothing. Not even close. Tomorrow is the first of a few milestones. I have to be (a) patient through recovery. Then it’s going to be time to get down to the work of re-learning to hear. I’m so ready for this, thanks to you. And thank you to the people of Alberta for the gift of a cochlear implant. And thank God for all of you.