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…
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.”
Monday, January 29, 2018 was activation day. Andreas and I hunkered down for a quiet weekend together and mostly were just anxious about how activation would go Our first worry was that the implant would work at all. It’s not really realistic since it’s tested at the end of surgery before they closed me up. Everyone was A-OK so we really just had to wait for activation.
Andreas brought a camera to record activation but there’s no AHA moment. Those are reserved more for infants and pre-lingually deaf (deaf before learning speech). To them the sound is dramatic. Andreas missed the moment the mics were on because I was just chatting with the audiologist when she flipped the switch. It’s boring. There’s nothing to see. There’s no drama. I start hearing and then we sort of work through a process to start developing what kind of sounds I can hear. I look good in my blue dress, but really, that’s not enough for an activation video (it is a great dress and I look super cute in it though. Just sayin’).
I invited Melanie Monaghan to activation because she referred me for evaluation for the cochlear implant program. She started the life-changing ball rolling and I really wanted her to share in the moment for a couple of reasons. First, she’s become a dear friend. She is thoughtful and compassionate. Melanie is good people, and something of a deafness mama bear. Melanie lost her hearing to viral meningitis when she was two. She was Canada’s second cochlear implantee when she turned three. She’s now working in a school division helping kids with their hearing and hearing technology. The other reason was that, Melanie had never been to an activation other than her own. She knows what’s going on and she was excited to see it from the outside. Melanie explained what was happening to Andreas and he was happy for the insight because from the outside, the process is pretty boring looking.
Do you feel the tension building? No? Of course not. Because there wasn’t tension. It was very businesslike and procedural. It kind of has to be. It’s high tech after all. IN MY HEAD! I still can’t get over that.
First, my audiologist, ShaSha brought out my backpack. By “my backpack” I mean the backpack with all my batteries, accessories, cables, manuals, warranty cards, and other bits and pieces. When she opened the processor box I was stunned. I’ve seen the Cochlear Kanso a couple of times, but those were just empty demo units. It’s really impressive how small it is. It weighs 14 grams and is about the size of a stack of 5 or 6 twonies (Canadian two-dollar coins). It’s small and off the ear and I love love love love it.
I choose black because flexibility counts. It’s so small and discrete it’s actually hard to see. We went to Thanh Thanh on Tuesday because after every milestone day we go to Thanh Thanh. They’re closed Mondays so we went Tuesday. Because that was information you needed to cope with your day. Anyway, we showed off my Kanso to the staff. We had to grab a flashlight, but the black just absorbs light, so I had to take it off. I seriously need to get myself a dummy model or a blank or print a 3D model so I don’t have to go deaf every time I want to show someone. Which brings us to actual activation.
First, ShaSha connected the processor to a computer and placed the Kanso on my receiver coil. It took a minute to find. I’m still learning. Andreas gets it every time.
Testing and calibrating the processor took a few minutes. There was a graph that was supposed to take a certain shape. If it wasn’t that shape thre might be a problem ( couldn’t tell you why, I should ask Andreas). One the tech test passed with flying colours, ShaSha tested the electrodes with a series of beeps. I wouldn’t call them beeps then, more like whooses of sound. Three days later I think I’d probably hear tones.
Then ShaSha opened the microphones.
The first sounds werenn’t natural, but I didn’t find what I heard unpleasant. I was making the connection between an action and a sound (clapping for instance). That was a good early test. Loud sounds weren’t bad either but I was really struggling to get past the warbling whoosing wall of sound I was hearing. I couldn’t recognize anything. Then something happened. ShaSha just said, “Let’s try counting to ten.” The phrase itself was a mass of jumbled noise. Then…
“One….two….three….four…five…six…seven…eight…nine….ten.” It sounds like “WHOOSHalkdjfalsjdfalj;dWHARBLE..alsdkjfaljdfWEFLKWJEFLEJKFadfjaskjWARBLE…etc” I ca say it was like noise but obviously more organized. I immediately had the sense I would be able to understand it, but I just didn’t know HOW what i was hearing was organized. When ShaSha finished the first ten, she started over.
“One…two…three…four…five…” and then dawn cracked on the number six. I heard the shape of the word SIX. Not the word six, but I could recognize that I was supposed to be hearing SIX – I could tell there was something there organized and it correlated to SIX. If that makes any sense. I can only describe it like one of those 3D optical illusions. If you shift your vision in one direction it becomes a coherent picture…move just slightly in any direction and it’s gone. That’s what it’s still like. I have to really listen consciously to shift what part of the audio spectrum I’m focused on…the detail of the sound sort of comes in and out of focus.
By the time ShaSha counted through “seven, eight, nine, ten….one…two…THREE I HEAR THREE!! FOUR! FIVE! YOU JUST SAID SIX! I HEAR YOU! OH MY GOD I CAN HEAR YOU. YOU SOUND BETTER WITH EVERY WORD! WHAT’S THAT NOISE? IS THAT YOU? IT”S SOMEONE IN THE HALLWAY? I CAN HEAR OUTSIDE THE ROOM?!” My heart was pounding and I stayed focused on my tasks and tests. My brain was so fascinated by the new relationship to sound that I just never broke stride. “Exceeded expectations” was the note on my activation form. Indeed.
My activation day was a “golden ticket” moment. I’m Charlie, and hearing is my chocolate factory. I’ve spent who knows how much energy trying NOT to hope for the activation day I just had. It’s the thing you hope for but dare not expect. One Facebook implantee told us he just heard lyrics in a song for the first time in sixteen years. I heard Michael Jackson singing “Billie Jean” yesterday, the day after activation. Tonight I heard “You Spin Me ‘Round” (Yes, 80’s tunes because they’re emblazoned in my teenage memory, I could still hear them, and I listened to them over and over and over – 80’s tunes are perfect generation X rehab fodder.
FAVOURITE SOUNDS: my titanium Medic Alert bracelet. It’s a pleasant jingle.
FAVOURITE VOIDE: I’ve started to hear Andreas’ voice the way I always remember hearing it. Full of character. It didn’t start that way, but by the end of the day on Tuesday, I could. He sounds all warbly and washy if I lose focus or am tired. Amazeballs.
All that said, I have a long way to go to even better hearing. There’s a ton of work to do, but it’s interesting and fun if you’re open to it. Tonight we sat on the kitchen floor for an hour and banged pots, the floor, the dishwasher, counter, and various trays and cutting boards with drum sticks. Andreas just tapped away on a wood cutting board…tap tap tap tap tap…then a metal cookie tray…bang bang bang bang bang…and back and forth for ten minutes. At the start the cutting board and cookie tray banging sounded the same to me. By the end, I “had” those sounds. This is all day every day. Andreas is amazing. He’s as motivated as I am for my hearing and I’m so grateful.
I’ve worn a pair of hearing aids at work, with friends, mountain biking, sea kayaking, shopping, even sleeping sometimes to wake at a noise (it never worked) all day, every day for the last 27 years. Yesterday, two days after activation I retired my hearing aids. Today is the second day I’m going full cyborg. It’s simply a better way to hear.
I’m still going to do a lot of listening rehab, but the really ugly hard grunt work of filtering through all that wash of sound and picking out something is done. My brain did it for me. Thank you brain. Good job. Take 8 hours and then we’re back at it tomorrow, because I’m so ready to hear more.