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.

Vanity Shmanity

One thing we didn’t talk a lot about on the podcasts leading up to surgery was my post-surgical “look.” I knew they were going to shave my head. I also knew they weren’t trained as stylists and hair care specialists. My job was to show up on time, lay down on a bed, and wake up a few hours later. I just wanted good placement of the electrode and implant for the best possible outcome. I thought about my hair, but it grows back so I wasn’t going to worry about it too much. Until I did.

When they remove the surgical dressing you’re confronted with a sticky, bloody mess of matted hair. Well, *I’M* not confronted with it, everyone else is. I was blissfully unaware of the post-apocalyptic Mad Max coif I was sporting. And really, other than Andreas, no one had to see it.

Minutes after surgery, and one week later (the nurse managed to pull off a respectable undercut!)

Four days after surgery I had the courage to “wash” my hair. By wash I meant “wet” and when I say, “I,” I actually mean “Andreas.” So Andreas gently cradled by head in the tub. I did my best to relax as he carefully poured warm water to wash away the blood and glue and mysterious surgical goop.  A few days later we added shampoo to the mix. Today I actually had a full-on by-myself shower and shampoo. Result!

Today marks a week week since coming home. I’m feeling a lot better and I’ll be right as rain by Christmas. And yes, I’ve already booked a hair appointment with Stephanie on Friday because while I look good, I can do better. My post-surgery hair isn’t an issue. What is an issue is that I NEED a haricut because I skipped it before surgery. Life is already returning to very normal (until activation day).

To be honest, I don’t mind if I wasn’t feel 100% by Christmas. The post-surgical hangover is a reminder of my best Christmas present this year.

The Elephant in the Room

Batteries not included.

Most of the time when you think of an elephant in the room, it’s the thing that everyone is trying to avoid. Don’t get me wrong, I’m not avoiding a cochlear implant. What I’m doing is trying to avoid thinking about surgery on Tuesday.

The thought of surgery doesn’t really bother me. I mean, it did bother me, but this morning after another emotionally wobbly, meltdown, conniption, and mild apoplectic fit, I realized I should talk myself down from the ledge I put myself on.

My self-talk these days has become very…pragmatic. For those of you following along at home, regaining one of your senses is a welcome gift – a modern miracle but I’d rather not have lost it in the first place. Even for the deaf, the climb to hearing and comprehension is daunting. I haven’t had a conversation on the phone with my husband since 2003. The last movie we saw in a theatre was “The Incredibles.” I finally figured out what it was about a week later when Andreas bought a bluray and we watched with closed captioning. Now I have to un-learn closed captioning? No one said anything about doing things the hard but better way? I like the comfortable easy way I’ve learned to cope with.

Yes. I’m having an acute case of “I want change, but I don’t want to change.” That voice appears to be disconnected from the one that wants hearing. If you’re having problems with voices, do what Oprah does: get everyone to talk it out.

My self-talk goes like this: “Caroline. Calm down. You’re going to have the most sophisticated medical hearing device on the planet installed IN YOUR HEAD because THAT’S HOW IT WORKS.” Andreas keeps saying my implant will be “installed.” I’ve failed to come up with a better word. Yes, it’s being implanted, but that’s a lyrical tautology. It’s being installed. It’s thoroughly unromantic, but it’s a great adventure.

I’d tell Isaac Asimov or Aldous Huxley what it’s like to hear like a computer hears. J.K. Rowling wouldn’t be a bad chat either – cochlear implants are kind of magical. Of course, none of these conversations would work for two reasons: 1) it would be a wasted opportunity until after activation day (Ms. Rowling, if you’re listening, come on over for a visit and we’ll talk about the magic of hearing). I’d really love that conversation with J.K. Rowling. Then again, I’d really love a conversation with anyone I could hear.

That conversation in my head comes and goes but when it’s on, it always drags on. After some introspection, worry, and self-doubt – when it’s time to attend to the world again – I just ask myself, “Can you live with a few days of discomfort to have a lifetime of hearing more.” Well, duh. Cranial neurosurgery is no match for my desire to hear more (and maybe one day, more than normal – my external processor will always be improved and upgraded). Andreas said something last night: “Your hearing will never grow old. Mine will. I may have to rely on you to hear for me one day.” For a second I thought I heard a noise from the other room – I thought I heard the tables turning.

When they say a cochlear implant is a life-changing moment, they don’t mention it changes everyone’s life around you. Thank God.