Navigating Uncertainty and Medical Mystery with Gillian Deacon

[1:33]Zibby Owens: Hi. This is Zibby Owens, and you're listening to Totally Booked with Zibby. Formerly, moms don't have time to read books. In my daily show, I interview today's latest, best selling, buzziest, or underrated authors and story creators whose work I think is worth your time. As a bookstore owner, publisher, author, and obviously podcaster, I get a comprehensive look at everything that's coming out and spend my time curating the best books so you don't have to. Stay in the know, get insider insights, and connect with guests like I do every single day. For more information, go to zibbymedia.com, and follow me on Instagram at zibby owens. I loved interviewing Jillian Deacon at our Totally Booked live event at the Whitby Hotel. She wrote the book, a love affair with the unknown, leaning into the uncertainty of modern life about her experience with an unknown illness, which she tries to figure out over the course of the book and in so doing does a ton of research into how to live life most fully. She is incredibly impressive, and I was totally moved by the book. Jillian is an award winning broadcaster and writer. She is a familiar voice on CBC Radio, and Jill spent over a decade there as host of Here and Now, Toronto's afternoon drive show. She is the author of the national bestsellers, There's Lead in Your Lipstick, Toxins in Everyday Body Care, and How to Avoid Them, Green for Life, and the memoir Naked Imperfection. Jill lives in Toronto with her husband and their three sons. Welcome to Totally Booked Live. I am so excited to be here with Jillian Deacon talking about a love affair with the unknown leaning into the uncertainty of modern life. Welcome. So excited. Sydney, this is such a treat. Thank you. Thank you for having me and just for all that you do for books and readers. I love it. Aw. Thank you. It's my pleasure, and it's so nice to have everybody here in the audience, and hopefully you will be having a great time laughing and clapping and all the good things. I loved this book so much. Aw. It's so good. I love how Well, first of all, why don't you tell people what it's about, and then I'll go into why I loved it. Okay.

[3:46]Gillian Deacon: I am curious to hear why you loved it. It's a book about learning to rethink our relationship with uncertainty. There's so much uncertainty in the world, my goodness, right now. You'd think I planned it to publish it with geopolitical uncertainty and climate and AI and the economy, and I mean, there's just so much weighing down on us about what's going to happen and when are things going to return to some sort of sense of stable order and predictability. The book is, hopefully, it's my offering to people about maybe letting go of the idea that that stable certainty is even possible, and actually recognizing all the power and potential and growth and opportunity and creativity and confidence that comes from thinking differently about uncertainty and seeing it as really the only thing that makes life possible. It makes growth possible, it makes hope possible, and the driver of that inquiry into how to rethink uncertainty was quite personal. I've had all kinds of experiences with health uncertainty in my life. I've had four cancer diagnoses, two serious treatments rounds almost a decade apart for breast cancer, and I also had long COVID for close to twenty months, almost two years. It was the period of long COVID that forced me to start examining how do we get more okay with not being okay. And so that was my starting point for investigating different ways to think about our relationship with uncertainty.

[5:45]Zibby Owens: That's what the book is about. Well, when you're reading the book, you also don't know that you have long COVID, it's sort of a gradual mystery medical mystery unfolding as we read, and you intersperse these so now it's not a mystery, but pretend you didn't hear that. As Jill shares the little bits and pieces of her debilitating medical condition, the doctor's appointments and all that, she then intersperses it with these really brilliant, thoughtful, almost essays, meditations on uncertainty using different quotes from authors and leaders and things from the environment, from all different ways, and spins them all into this perfect web so that we all understand a little bit more about life and how do we live it better. And you came at this from a journalistic perspective as a big deal Canadian broadcaster yourself. Talk a little bit about that and how what you were doing fed into your critical reasoning about this whole condition.

[6:53]Gillian Deacon: That's true. I've been working for many, many years as a live broadcaster, and uncertainty is baked right into that career. When you go on air, I've most recently hosted a three hour afternoon radio show every weekday on the national public broadcaster, the CBC in Canada, and so you go in with your scripts of what you think you're going to talk about, but so much news breaks throughout the three to 6PM chunk of the day, and live broadcasting is about being nimble and responsive to when that happens, so uncertainty is inherent in the work. I tell a story in the book about, you know, sitting, I can't remember the exact date now, but anyway, was this December day, believing that my next interview was going to be about the upcoming Santa Claus parade, when all of a sudden the news broke, it came shattering, I'll never forget it, into the newsroom that Nelson Mandela had died. I mean, this massive global moment that I get shivers even now thinking about it, that was an historic event, and the entire world was responding to it. And so the script for the Santa Claus Parade went right out the window, and my team was scrambling behind the glass to quickly rustle up guests and experts to talk about the impact of historic figure in our lives and what this moment signified. There's just something about letting go of what you thought you were in control of and surrendering to this exact experience as it's happening. There's a communion with the listeners in a way that's different than when you're reading off a script. It's like what's happening here in this room. I don't quite know what I'm going to say next, and none of you do, and that's partly why we're here. In the age of artificial intelligence, who knows what's real, this is real right now, and there's something just vibrating about that. Anyway, a version of that is what I lived all the time as a live broadcaster, and what I guess trained me in some ways for all the other health uncertainty that I also wound up going through. Do you mind if I read a section or two? I don't.

[9:25]Zibby Owens: Okay. This is to your point of learning to live with all of this uncertainty and everything. You say, I tap above my belly button. I tug gently on my ear lobes. I touch the back of my neck and cast my eyes to the left and right, breathing deeply. Each Vagus Therapy exercise looks and sounds more whimsical and absurd than the next, but there is no mistaking the immediate wave of calm that washes over me as I follow these quirky steps. I have no idea what I'm doing, but it works. Lost in the not knowing, I yawn, sigh, and observe a gentle reprieve in my physical discomfort. I have wandered off the path and don't know how to get back. But look at all that there is to be found here. It seems to me that the safety and comfort we seek, that we mistakenly believe will be found in the arms of the familiar and predictable, is right there and present in the uncertain. We just have to learn to recognize all the value the liminal holds. How beautiful is I like that. You can use it. Can take this on the road. You. You also I just want to show listeners how beautiful you write about pain, which is itself a gift, and I'm so sorry you had to go through all this because it sounded torturous, and there are many, many passages on it, but let me just read you this little one. Let me try to tell you what I hear right now. Come into my head. Plug your ears, though. It's loud in here. A deranged toddler is on the loose in my ear canal, smashing their angry, fleshy little fingers onto all the control panel buttons at once. There's a microscopic demon wielding a shard of flint scraping its sharp point across a fluorescent light tube that threatens to crack open. An impish intruder leans on the top note of a tinny little keyboard. The tiniest bird is in there, howling for recognition, its yellow beak stuck into a crevice in the apex of my cochlea. Who invited you assholes in?

[11:16]Gillian Deacon: That's my description of tinnitus, or tinnitus, or whatever it's called. Yeah, that was one of my symptoms. It's interesting that you're reading the parts that are about the discomfort and horror of going through long COVID, because those are the spine, I guess, of the through line of the story. As you say, it's sort of the medical mystery that, to an extent, drives the reader, and maybe it's because I lived through those, and I very much don't feel that way anymore, that I of I feel like saying, That's not what the book is about. It's not about pain and suffering, it's about inquiring into sort of the all the, as I said, the sort of possibilities and other things that open up when we learn to handle things that we don't like, and yet that's interesting that those were the parts that you were drawn to, or for the moment anyway. There were many parts. You also talk about how

[12:12]Zibby Owens: all of the uncertainty heightens your awareness of the present and how you should appreciate all the mundane things that maybe annoy you in the everyday, and yet those are the things that you would miss the most and you miss the most when you were in bed and just wishing you could run up the stairs easily and just do the normal things, and you were like, when is that version of me gonna come back? Mhmm. Okay. I don't usually read this much, but I just there's so much fodder here. The conclusion you reach from all that is something that I have not stopped thinking about since I read the book, and I every time, which is often, I have four kids, every time I get annoyed, I'm like, but what if I couldn't do this moment again? And it's changing my perspective all the time. And you said, the next time you're stuck in a situation that feels frustrating and not what you wanted, pause for a second to ask yourself how you would feel if you never got to do it again. When I find myself stressed about running late or angered by a slight or grouchy about having to clean up someone else's mess or bored by a droning conversation or fuming in gridlock traffic, I try to remind myself of the times I spent in hospitals, wondering whether I'd ever be able to run late for anything or clean up a messy kitchen ever again? What if something changed your circumstances so that you could no longer drive? You could find yourself missing the chance to sit stuck in a traffic jam, not realizing how fortunate you were to be able to operate a vehicle. Don't dwell on the possibility of terrible things happening to you or your loved ones. That's unproductive anxiety, but do consider for a moment the possibility that you may be doing something for the last time.

[13:44]Gillian Deacon: Yeah, I learned That's one of the sort of areas of inquiry that I stumbled into when I was sick with long COVID. My ability to expend energy was very limited, but writing and reading a little bit was certainly something I could do, and that's how a lot of this book was written in that period. But I discovered that Stoic philosophy, that sort of premise in Stoic philosophy that I think it's called the last time meditation, is something that we can do, which is that exact thing that you described. The idea of Again, it's a way of reframing uncertainty or unpleasantness, something, some discomfort that we're experiencing, which is often sort of a violation of how we think things should be. Someone else should have cleaned up this mess, or this traffic should be moving at a better pace so I can get to my appointment, we have this sort of hubris that drives our sense of how we think things should be, and I just loved When I stumbled upon that aspect of stoicism, the idea that, Hold on a second. What if Just take your ego and your need to control the situation, which isn't working because you're still stuck in traffic and these messy dishes are still here in spite of how you think it should have gone, and just turn it upside down and think of it that way. I just found it beautifully liberating to It literally, in the moment, changes anything unpleasant into a treasure. That is a basic premise of Buddhism, the idea that the present moment is all we have, and we can know that, but when we really are forced to think about that, it just erupts with richness, I find. So yeah, that's a really helpful practice. I guess practice is the keyword. I had a lot of time, I had a lot of months to practice, getting more familiar and more comfortable with the present moment, whether I liked it or not. But it is something I think all of us in all of our respective uncertainties can work on and practice and think about and find a lot of comfort in. Today's episode is sponsored by Quince.

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[18:54]Zibby Owens: I'm curious about you now because a lot of the book takes place while you're going through these things. You also take us back to your cancer diagnosis, and you're so funny even when you write about it. You're like, And then when I found out about cancer, and you're like, Not a sentence anyone wants to write, and then you go back the next time, you're like, Again, a second sentence nobody would like to write. So you talk about all these, the impact on your family, how you are managing all of it, work and kids, just all of it. And then the resolution of your long COVID, what has happened since? Like, what do you do aside from writing an amazing book like this with all of this information and the knowledge that you're so lucky to be in the moment? Like and then how do you take all that but then have to, like, get your to do list done and finish emailing and, you know, get on the like, how do you how do you and then, therefore, all of us, like,

[19:46]Gillian Deacon: synthesize all of that? I mean, is I haven't got it all figured out.

[19:51]Zibby Owens: Give us the secret It's a

[19:53]Gillian Deacon: work in progress, as are we all. I guess the one big thing I did when I did get better, and I feel like a bazillion percent back to my old self, which I'm very happy to say. I partly say that just as a small note to anybody who's suffering with long COVID, or something vague and mysterious that they don't know if it will ever end, because I think it's important to know that these stories do end and end really well, so hope putting that out there for anyone suffering. But one of the things it did was change my perspective on what mattered. Like what happened in the pandemic, we all sort of had these recalibrations of priorities and thinking, Wait, life is short, and maybe I don't want to keep doing this job, or whatever. And in my case, I had been ready to take a leap and trust myself, she said, pointing to the person leaping off a giant cliff on the cover of my book. I'd always wanted to do a podcast. I'd always wanted to, I don't know, do all kinds of other things that I'm now able to do, and it's partly, I guess it's a trust in the moment and in myself. I'm not sure I'm answering the question. How do I synthesize

[21:13]Zibby Owens: all the suffering I went What is just on a daily basis, like this morning, getting dressed and putting makeup or doing whatever, like, how do you keep all of the perspective and then still accomplish the everyday stuff, or does it just make your mood a little bit lighter? It definitely Yeah, I mean,

[21:32]Gillian Deacon: Well, as I used earlier, the word practice, I meditate in the mornings and I try to think about the I try to recognize, again, that power in the present, and it helps me throughout the rest of the day to put those anxious, fearful thoughts into perspective and think, Okay, these are just thoughts I'm having, and some of them may come true and some of them may not. I think a lot about the idea that we tend to mistake our thinking about something. We assume this and we habitually think such and such, but it doesn't make it true. So I sort of practise catching myself in that, Well, wait a second, what do I actually know to be true? That often brings me back to something right in the present moment. Yeah, I guess it's a habit. I try to catch myself readily throughout the day and find a moment of something to appreciate. I try to notice I write about that in the book, the idea of what are we paying attention to? And we have this Our attention bias is something well documented in research, that we tend to be drawn to negative news, and I cite all kinds of research that shows that habitually humans, partly because we've evolved by learning how to avoid crises, and we've survived by remembering where the mangos are down that path and the wildebeest down that one, so we've learned and evolved as a species by paying attention to risk and by doing some planning to ensure our safety, but it's all within reason because ultimately none of us knows what's going to happen when we walk out of this room right now. Anyway, I guess I kind of lost my train of thought there. Well,

[23:29]Zibby Owens: that's good because I had something else I Okay, wanted to talk You go. No, just the last thing. You talk about one of the benefits of realizing that there are benefits to uncertainty, and you used an example of the music we listen to and how sometimes even pro these apps that can pick what we like to listen to and just feed us more of the same stuff all the time. And that's fine, and we generally like it, but then you never get the rush of excitement from discovering a new type of music and, like, how would we ever have stumbled on new musicians and talent and everything if we just keep always kind of doing a variation of what we're always doing? I'm so glad you mentioned that because it's true. I think that one of the things that's making our

[24:17]Gillian Deacon: discomfort with uncertainty worse is our devices, and there's so many great features of the weather app and the parking app and the music algorithm that just feeds you, Oh, you like this? You're going to love that. And it's just, Okay. But what that does, and it sounds like a good thing, is it erases and removes a lot of friction. We think, Oh great, I don't have to worry about going over and finding change and putting it in the parking meter, I just press the button on my app. It does remove some friction in a good way, but it also removes friction that keeps It's like muscles that we've stopped flexing of interacting with other human beings and making conversation at the grocery store and deciding, Is this banana ripe or is that banana ripe? If we're just pressing a button on an app and having things delivered to us. Yeah, those algorithms and technology is designed to help us in many ways, but it's in fact removing some potential moments for that feeling of aliveness. As you say, when you I'm old enough to have memories of thumbing through the vinyl albums at a record store and pulling it out and screeching over at your friend, No way! And sort of the discovery, or Let's try this one, and the putting it on and listening, and the little tiny explosions that go off in your mind and your spirit when you discover something new, or when you make the effort to do something and it works. Maybe it doesn't work at first, but then it does. I mean, those are muscles that were a little out of practice with flexing. I think one of the ways, and I'm putting this into practice in my own life now, this might answer the original question that I kind of got lost on, synthesizing it all. One of the things that I'm doing in my own life now is actively seeking out discomfort and unfamiliarity and things that are going to force me out of my comfort zone, because the more I do that, by definition, the wider my comfort zone gets. First of all, it feels amazing to think, I'm going to go to a neighbourhood I've never been to and try a restaurant I don't know anything about and see what this tastes like, or I'm going to cook with different ingredients, or I'm going to try a whole different walk on my commute to or whatever. I'm going to talk to strangers in transit. I mean, things sound okay, what is she all about here? But honestly, the sense of aliveness and connection to the world, which last time I checked was kind of the point, absolutely increases when we force ourselves into more uncertainty. So that's the positives of uncertainty, is that it opens us up to more hope and more growth and more creativity and more aliveness.

[27:32]Zibby Owens: Amazing. Jill, thank you so much. A love affair with the unknown. Jillian Deacon, thank you. Thank you. Thank you for listening to Totally Booked with Sibby, formerly moms don't have time to read books. If you loved the show, tell a friend, leave a review, follow me on Instagram at Zibby Owens,