Accessorizing the Cyborg Way

This week I went back to work. I work at the Marriott Courtyard in Edmonton. I work in the hospitality industry because it suits me: I love people.

Hellen Keller said, “Blindness separates you from things, but deafness separates you from people.” Every deaf person knows the truth in Keller’s words. They also know they she hard it harder than most of us (being what’s now called “deafblind”). Still, going back to work fostered a lot of anxiety. By Dr. Liu’s account, the surgery was “pretty routine.”

When you agree to a cochlear implant, you sign an agreement. One of the first items in bold uppercase is the following note: AFTER SURGERY YOU WILL BE DEAF ON THE IMPLANTED SIDE.

So you’re sitting in a room being told you will regain access to sound, but you have to agree to do the one thing you have spent your entire life aiding your hearing to fight against: you will be deaf. Stress? Heck yeah. Emotional? oh Baby. Exciting? Like you would not believe. I signed the agreement because I want access to sound. I want a cochlear implant. I was profoundly hearing impaired before surgery. Now my right ear is completely deaf. And I can’t tell the difference. Honestly.

Managing the paradox of “I’m choosing to become deaf so I can hear” demands more than a little trust in your treatment team. I do trust them. They’ve been as honest and forthright as you could hope. Heck, my first evaluation meeting started with, “Just so you know, 100 percent of cochlear implant recipients hate the way they sound.” Yeah yeah, whatever, let’s move on. I’m looking forward to hating how it sounds too…because SOUND! I’ll learn to love whatever it sounds like.

Last week I went back to work. It was exactly one month after surgery. Before coming back, my hotel’s senior managers invited me for lunch. We had a wonderful meal where I shared my experiences in the process, the surgery, and recovery. I suspect I’ll be doing a lot of “show and tell” – probably for the rest of my life. But I’m good with that.

My husband made tent cards branded with the hotel logo explaining to my guests that I might struggle more than usual with my hearing. The hotel is also printing small business cards which explain my hearing loss, the implant, and then links to this blog and podcast if guests want to follow-up.

I’m so grateful to my general Manager Chris, operations manager Nicola, and the entire staff at the hotel. They’ve been so kind and helpful – it’s a huge relieve to have one less thing to think or worry about. Feeling isolated is a debilitating problem for the hard of hearing and deaf. I’m so grateful for the management and staff at my Courtyard Marriott (downtown Edmonton).  And hey, be sure to stop by the Riverside Bistro! It would be my pleasure to serve you (and answer any questions you might have).

You always want to look presentable with you work with the public. My stylist friend Stephanie gave me an amazing cut a few weeks ago, but my head is still so tender that I find it hard to style it the way it should be styled. I have to get my haircut before activation day anyway, but a couple of times my husband has looked at my experimental hairdos and simply said, “No.” We laugh because the problem is real: how do you DO your hair when you don’t want to TOUCH it?

Hair and accessories are all on the outside. My best accessory is going to be my kanso, but my favourite accessory right now is my implant. I mean, look at these pictures. What’s not to love? I’m wired for sound!

Wired for sound.
Wired for sound.

One for the Nerds

Hello nerds, it’s me, Andreas. You are my people. That’s who this post is for, but if you’re not a nerd please read on – you’re still going to learn a bit about me and a lot about sound, hearing loss, and cochlear implants. I’m going to skew toward the conceptual because the serious hard core nerds are looking this stuff up before I can write about it anyway – no need to get bogged down in specifics.  Moderate nerdism is what I’m talking about. “Ectomorph Temperans Nerdicus” is on the crest.

You see, it’s one thing for a loved one be evaluated, confirmed as a candidate, and preparation for surgery progress. There are so many milestones that it’s easy for a nerd to get a grip on not just what is happening, but to understand how it all comes together. There’s actual research that suggests nerds are nerdy not because of pencil protectors and computer games, but because their curiosity utterly supercedes any fear of failure. They’ll explore, test, examine and learn until they’re satisfied they have a complete grip on the question at hand. This means I want to SEE, TOUCH, EXAMINE, PLAY WITH, and generally get my head completely around what the cochlear implant and processor technology is, how it’s being used and what it’s doing.

Even the language is a little different in the program here. Candidates” are people who ARE getting an implant, versus someone who has been recommended for evaluation. It’s weird nomenclature but I didn’t write the guidebook on that. If I did candidates would be proto-cyborgs, and then just cyborg or”borg” for short. “Cochlear implant patient” is just so 1986 (with apologies to Dr. Grame Clark).

As a nerd, I have a lot of technical questions about the implant. This isn’t out of a overblown sense of competency or anything. I just want to know how the audio is processed. I recently switched to a new studio production tool (PreSonus Studio One 3.5.2) and it includes a whack of analysis and metering tools that that are inadvertently helping me understand what Caroline hears, compared to what normal hearers hear. I have some digital instruments that employ different audio processing (like granular synthesis) that sounds remarkably like cochlear implant audio I’ve been able to find online. That’s just one nerdy thing I’m curious about.

Audio is audio. We’re all working with moving air…unless you have a cochlear implant. Then the moving air is out of the loop once it hits the sound processor (hearing aid). At that point it’s all electrons. Electrons in the processor computing the sound, electrons transmitting through the skin to the implant, and those electrons traveling down the implant to the cochlea, sparking the auditory nerve and your brain lights up with “SOUND!”  It’s almost exactly the same processor in my studio computer. The only difference is that my studio audio goes to speaker or headphones, not a nerve. So, it occurred to me that I had a bunch of ways to SHOW Caroline what I hear. It’s all physics – if we know the math we can recreate it. The only difference is the size of computer. Not surprisingly, Caroline’s processor is the most sophisticated real-time audio processing unit on the planet. There isn’t a single piece of audio gear in any recording studio dedicated to real-time audio processes than Caroline’s Kanso implant. If that doesn’t throw you into a full five-alarm-red-flag-klaxon-howling-bang-on-a-garbage-can-nerd-alert, nothing can.

Caroline and my studio production software also have something in common: the implant is a permanent thing. Caroline for the rest of her life. It’s been on our minds a lot lately BECAUSE of my studio software issues. For me, it’s a problem solved. For Caroline the same problem would be devastating. And it’s an issue that will be with us for Caroline’s entire life. And if that isn’t enough of a teaser, then you’ll just have to listen to episode 5.

At the end of yesterday’s podcast Caroline wanted to do a demonstration to show just what NOT hearing things is like. She did a little object lesson with a little crystal Christmas tree bell. She ran the bell “open” so it would ring. Then she rang it closed. If you’re like me and have normal hearing, you hear “tik tik tik tik.” It’s a clear difference. Everyone gets that but the deaf. What you can’t see in studio is Caroline’s expression of amazement that they sound the same. Release the Nerd! What struck me was that it’s easy to reproduce Caroline’s hearing loss in the studio: turn down the volume. We’re going to do another demonstration of what Caroline hears. Ironically the only way for you to hear what she hears is for me to crank the volume. It’ll make sense when you hear it. We’ll have that demonstration during Caroline’s “quiet” post-surgical recovery.

Sound is a quirky thing. In the studio, silence is your canvas, and sound is the paint. You’ll probably notice an evolution of sound of the podcast itself. There are a few good reasons for this. The first episode was a hasty production. We’d just gotten the news that Caroline was approved and would receive a cochlear implant. We were so excited and flabbergasted that it took us three hours to record the first fifteen minute episode – we said things that were too revealing, inappropriate, and for a lot of that first episode, in spite of being in a studio, we forgot it was a podcast and we just talked about what a cochlear implant means for our future. I was in a hurry to get the first podcast out; I took some shortcuts which compromised the quality of the audio. The audio is “gated” (it sounds like it’s switching on and off, which it is). In short, I apologize for the crappy sound early on. It should be better now.

It’s ironic that we’re producing a podcast about hearing impairment, deafness, hearing health, and cochlear implants. The audience with the most appreciation for it can’t hear it and we don’t have the resources to provide transcripts to deaf/HoH listeners. That said, Caroline wanted to do the podcast for people who have normal hearing, or THINK they have normal hearing. That second part is especially important because only a fraction of people (barely 20%) who need medical intervention for their hearing (hearing aids or surgery) don’t get it. Usually that’s because they don’t know they’re struggling to hear.

Caroline describes being hearing impaired like needing glasses not wearing them. Most people with glasses have the experience of “look at the leaves,” the first time they put them on. They’re astonished by the detail they’ve been missing but didn’t know they were missing. It’s exactly like that with hearing: low rumbles are high energy so they’re audible, high frequencies are less energy so they seem to disappear first. The solution: just go for a hearing test. If you’re struggling, the worst thing that can happen is that you’ll find out you can get help.

This afternoon we’re going to sit down and talk with Caroline’s audiologist, Greg Nedelec at Living Sounds. The first part of the discussion is going to be what to do about Caroline’s left hearing aid. It might be an orphan after the surgery – and Cochlear is in cahoots with ReSound hearing aids. They make a hearing aid that will talk/work hand-in-hand with Caroline’s implant from Cochlear. We’re also going to interview him for the podcast. It’ll be a wide-ranging interview we’ll use over the next several weeks. Greg has been Caroline’s audiologist for nearly twenty (20) years, so he knows her hearing as well as anyone.

In the meantime, eight days to surgery. We’re stalking up on fluffy pillows, a movie watch list, popcorn, and over-the-counter pain relief.

All Saints Day

While most people look forward to Halloween (and Lutherans the world over will party like it’s 1517 – the 500th anniversary of the Reformation), Caroline is looking forward to the next day.

Shortly after landing in Toronto for a family visit, Caroline received her next appointment: she’ll be meeting with the surgeon, Dr. Liu.

We assume the consultation is to schedule a date (or window of dates) for surgery. Caroline is also looking forward to the “this is what to expect” talk

We’re still way ahead of schedule, and the visit home to Toronto went a long way to ease nervous family members (all of whom suffer from varying degrees of the same kind of sensorineural hearing loss).

In fact, in episode one of the podcast we joked about family conversations. I wish I would have recorded the chat because it went like this:

CAROLINE: Pardon?

ANDREW: excuse me?

CARMEN: (cranks up aid) Say again?

You get used to it. In fact, a tangible upside is that everyone is desperate to make sure they’re getting the right message. It looks hackneyed and sounds rude, but it’s courteous and earnest.

November 1st is another exciting day on the calendar. When know Christmas is December 25th. We’re anxious to find out when cochlear Christmas is.

Meanwhile, episode two of My Beautiful Cyborg will be recorded partly on the flight home and partly in studio. We’ll have a very special guest talk about what it’s like to raise children when you can’t hear them.