The Big Game

A friend of ours was generous enough to treat us to an Edmonton Oilers hockey game. Andreas worked at the Oilers for over a decade, and going to games became routine. There was nothing routine about last night’s game (a 7-5 loss to the Florida Panthers for anyone keeping track at home). It hasn’t been a great season for the Oilers, but it was a worse night for Mo, my cochlear implant.

I was braced for a sensory overload as we walked into the NHL’s newest state-of-the-art arena. It’s an expansive building with personality splashed on the walls with light. It’s a hockey arena. It’s what you expect one of those to be. Sadly, it was mostly an uncomfortable experience.

First, I could hear until I couldn’t. Hockey arenas are big concrete and steel echo chambers. They’re basically big Faraday cages that create a soup of radio signals. Those radio signals (from 20,000 phones, wireless networks, various telemetry gear etc) caused my remote to seize. I couldn’t turn down the volume or change programs because my remote(s) were disconnected from the processor – radio interference cut me off from controlling my processor. We had to beat a hasty retreat and found that outside of arena on the concourses, there was no problem.

I’ve had my hearing for two weeks. That’s two weeks of #deafnotdeaf and I just can’t go back. I won’t. The arena was compromising my hearing, so it was time to go. It’s not even an actual choice for me.

A few things about the arena: sustained 80dB volume level are dangerous over time. Roger’s Place It’s 60dB (normal conversation volume) when it’s quiet. That means you have to speak louder than a normal conversation to hear or be heard. The 80dB peak levels are actually dangerous over time. If you have Oilers seasons tickets for more than a decade: get your hearing checked. Seriously. It’s a hockey arena. Noise is inevitable, and I’m basically deaf so it’s not like it’s anything other than painfully uncomfortable (which it is at times – and if you’re reading this and NOT experiencing pain or discomfort, then DEFINITELY get your hearing checked).

Two other issues struck me while were there.¬† First, they play an in-arena game to make the building as loud as possible. Yes, noise is fun. Unfortunately, the Oilers are entertaining their fans to deaf. They should rethink that strategy. I have an expert opinion on this: deafness is not fun. My prize was a cochlear implant. It’s worth more than a box of pizza. It’s priceless.

I’m used to being deaf so the temporary confusion was horrible, but manageable. Getting in and out of the arena was…unpleasant.

Look, I get it: I have a metal implant in my head. They have security gates. They want to make sure fans attending the game are safe. Important not for future reference: CI users don’t like security gates or anything that emits radio waves. While metal detecting arches are safe to go through for regular people, they can cause serious problems (erasing your hearing program, or MAP). Then you’re deaf or suffer with screwed up hearing until you can get another (costly) appointment to reload your map. On top of that, hockey arenas probably aren’t buying the very best shielded metal detectors. The best way to avoid it is to ask for a pat-down and avoid the arch altogether. As one might expect, the security staff were clueless, but courteous. You can show them a cochlear implant, but there’s still a lot of confusion and staring. I get it. It’s unusual. I’m a cyborg. And I’m afraid someone needs to educate the security staff on how to deal with exceptional people like me. Please just let me walk AROUND the security gate. Frisk me, please…just let me keep my hearing.

I’ve been to hundreds of NHL games. It was great to be in an arena with the excitement, energy, and¬†noise. But the noise is excessive and the energy confused my gear. I was deaf for 28 years. I’m not going to do that again for a single minute more if I don’t have to. And right now, if I want to watch hockey, I kind of have to.

My experience last night was a bit of a bummer, but hearing is too valuable to lose it even for a couple of hours of hockey. In our game of our life the score will always be:

Hockey: 0
Cochlear Implant: 1

 

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…

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.