A Year and a Day

“The first day of the rest of your life.” That’s one of those trite old sayings that – at certain times – smacks you in the face like a cold facecloth. >smack<

One year and a day ago, on October 5, 2017 Andreas took a phone call. He was so rattled by the news that he began to shake. He had a message for me. The message was so serious, so life-altering, so consequential, that he did something he had never done before. 

Andreas started up the computer, wrote a short letter, checked it for spelling and accuracy (I love my nerd). He then hopped in the car and drove to hand-deliver the message. The message:

“You are a candidate for a cochlear implant.”

We both remember the moment. Andreas walked into the restaurant where I work, and simply extended his arm with the letter. I knew what it said but reading it was a big, wet, cold facecloth. The note may as well have said, “Your life is going to be different in ways you are unable to imagine.”

We’ve been away from the podcast and blog for a reason: I broke it. Andreas created a schedule to follow my typically slow progress to regain my hearing. The problem is, my brain didn’t read Andreas’ season outline or show script summaries. My hearing cortex was unaware that I was supposed to be frustrated with the slow progress to understanding speech. 

Instead, I could just hear. I have a t-shirt with #icanhear and #deafnotdeaf on it because there’s no other way to describe my hear. I hear.

Yesterday I read a very upset post on Facebook. The poster was activated a few days ago. He’s angry. He’s upset. He thinks it’s a mistake. He’s not hearing words and he can’t imagine it will get better. 

The Facebook poster is having the near opposite experience to me. And that’s the nature of cochlear implants. It’s the ultimate in customization. It’s still the only sense we can replace. That the guy can hear anything is a miracle. It’ll improve with time. Cochlear Implant recipients learn to be patient.

I’ve been hearing for eight months. In that time we’ve been featured on radio, tv, a magazine article we can’t track down, met with the minister of health and there’s more on the horizon. That’s year one. 

I couldn’t always say it, but I can’t wait for the future. 

It’s Like Waking Up

Where has the time gone? It’s been way too long since we recorded a podcast, but that’s on the schedule for this weekend. Finally. We’ve probably lost followers as a result of seeming inactive. The truth is, it’s been a whirlwind since activation. I’m still exhausted because hearing with a CI takes concentration, and I have really good concentration. The downside is I feel guilty because I’m not good company since I fall asleep shortly after dinner. The first few months I couldn’t sleep for hearing, and now I can’t stay awake. And this is normal. Everyone tells the same story: it’s like waking up.

So firstly, Andreas says I broke the podcast. The whole idea of My Beautiful Cyborg was backed by ideas like “This is what hope sounds like” and “A journey back to hearing.” Except my journey lasted to the sidewalk, and then I found myself in orbit around the moon. My audiologist said, “Some people walk, some people drive, and Caroline takes a rocket to the moon.” So yeah. My rehab has been unusual in that it was unnecessary. There were a few days and banging on pots and pans, and now and again I need to focus to recognize a sound, especially new sounds. But mostly, I just hear.

I’ve called homecare for my Mom in Ontario, I’ve made arrangements with an insurance agency, and I’ve called to make appointments….all on the phone. That’s a first in 15 years. Phone audio is bad for the hearing, so imagine hearing that garbled digital blech, and then feed it through my processor. Sometimes, noise is just noise. Everything is changing.

The last podcast we recorded was with the Honourable Sarah Hoffman, Minister of Health (and Deputy Premier) of Alberta. On Wednesday, Andreas and I went to the Alberta Legislature to be welcomed in the House. That means we had another short visit with the minister (and I said thank you for my CI, again), and then as sort of a “you’re welcome,” the Minister introduced us and acknowledged us as a nod to May as Hearing Month. So that happened. It’s important for official acknowledgements of the hard of hearing and hearing impaired. Minister Hoffman gets it, and for that we’re simply grateful – you don’t have to explain much for a simple reason: she has a family member who has hearing loss.

Hearing loss is invisible, but it isn’t abstract. It has tangible negative effects that you probably won’t recognize even if you know them – because we’re only realizing how bad my hearing was now that I have it back. The comparison is stark.

Then, a couple of weeks ago and bumped into an audiologist from Cochlear who said, yeah, my “rehab” is kind of astounding. Which is to say, I just hear. It’s not normal, but it’s a really good not normal. I feel like I won the lottery. In truth, I kind of did. My experience is way out of hte ordinary. It also provides an extraordinary if not unique opportunity to tell the hearing story. The truth is, I’m probably the perfect hearing teacher. I’ve adopted the monicker of #deafnotdeaf. I’m definitely deaf, but I’m not deaf with my CI. And I know what it is to lose your hearing completely. I do it every night before bed. And every morning I wake up and I can hear. THAT is extraordinary.

We’re restarting My Beautiful Cyborg – a sort of second season. We’ve been talking (a lot) and planning (not quite as much) and thinking (even more than talking) about how to tell the story of hearing and hearing loss from a perspective people will understand.

Coming Soon: My Beautiful Cyborg: A Love Story About Hearing

ZZZZzzzzz Part the Second

This is part two of my ZZZZzzzz entry. I simply cannot get over how tired I am.

Before activation I trolled message boards for advice like everyone else. I asked everyone I know with a Cochlear Implant (CI) what to expect. “You’ll be tired.” Yeah yeah, what else. “That’s it.”

They weren’t wrong. Seriously. After basically taking a thirty-year nap, my speech centres are awake, keeping the rest of my brain awake, and they just never want to sleep. Okay, everyone gets it: hearing take effort and if you’re out of practice, it’s exhausting. Yeah, fine. Good good. I get it.

What I didn’t get was just how comprehensive all the changes would be. I mean, it’s once thing to just casually go to the store, buy something, check out, and NOT have it take ten minutes of awkward misunderstood conversion to figure out she said, “Do you have a nickel?” I do that all the time now, but it’s a still a thrill every time. It’s more than that though.

You’ll notice that we haven’t recorded a podcast in a while. Well, there are good reasons for that. My Beautiful Cyborg was originally, “This is what hope sounds like: a journey back to hearing.” Well, I covered what was supposed to be a few grueling months followed by a lot of effort for a couple of years to hear normally. Months and years is the usual measurement. I was done in four days.

Yes, I’m not kidding.Four days after activation I was done rehabbing in any kind of formal way. Which is to say, I didn’t do any rehab in the normal sense. So, that kind of cuts short the idea of following progress slowly over the course of months and years.

Instead, we’ve finally come to the decision to keep going with a new post-hope version of My Beautiful Cyborg. We’re calling it “My Beautiful Cyborg: A Love Story About Hearing.” Because, I love my hearing, I love to hear, and I want everyone to appreciate how special it is. Because you don’t ever ever ever ever want to be in a position where you have to say, “You were right,” because you’ve lost some hearing.

This “new season” of My Beautiful Cyborg is going to focus on OUR hearing, yours and mine. We’re going to explore sound and hearing, and we’re going to have some fun with sound too.

We’re going to be back online in a couple of weeks. Because we’re post-hope. I CAN hear. I still can’t write that without tears. But to that Andreas always says, “Rain sounds beautiful. Let it rain.”