Your book was in a word brilliant. I’m wondering if you ever go back and read it and see new things or if now that you’ve written it, you never want to think about it again, given that it was about a terrible time you went through and a terrifying illness?
Thank you so much, I’m so glad it resonated with you. This is a particularly timely question, as I just spent about three and a half days last week recording the audiobook version of The Beginning of Everything, which meant literally reading it aloud word for word, cover to cover. It was the first time I’d ever done that—I don’t think I’ve ever read an entire book of mine out loud before, even to myself!—and probably the first time I’d really read it through in a meaningful way since I’d gotten the first pass pages back in January of 2018, which had been my first opportunity to read it all the way through with it laid out and looking professional. Back then, reading through it fresh off the writing process, it was the first moment where I had a sense of the whole thing existing as one story, as a real book, and it was amazing to read through it with the thrill and humility and sheer relief of knowing for sure that it worked. Reading it through this time, a little over a year later, out loud, with a whole other year of healing and recovery and setbacks and etc. behind me, was a quietly emotional experience. In a way it felt like closure, a little bit of wrapping up of the puzzling and processing I’ve been doing ever since I first got sick. Being able to revisit it again and have more context for everything, more distance from everything, I was able to see which things I’ve been able to let go of, and which things still snag my heart.
When tragedy happened to me, I felt as if a layer of life had been ripped off and I truly saw what it was to be alive in the world—which was terrifying to me. From your astonishing book, it feels as though it was the same way for you. How do you manage, day to day, to not be in terror of something like –or any other strange and awful thing-- happening again? In a way, the title THE BEGINNING OF EVERYTHING is perfect, because I feel that it addresses this newness.
It was difficult, especially in the beginning, when I was forever in fear of relapsing, of doing some small thing and having the CFS leaking again. I had spent so much time tracing and retracing my steps, trying to find every tiny little thing that could have led to this, every small disaster I hadn’t noticed at the time, every risk I’d taken that I’d riskily dismissed, that it was hard not to be hypervigilant for the next thing, and the next. But at some point, I realized, this task was both fruitless and endless. There would never be one thing, one solid, graspable, definable answer for why what had happened to me had happened; and even the things I could point to—the cough, for instance—were things that had barely registered for me at the time as dangerous. And while that sense that everything could be horrible at any time, at all times, could feel claustrophobic and terrifying, it actually became the thing that freed me. I realized that if it was true that some small, insignificant thing, some tiny moment I’d barely noticed, truly had been the thing that made it all unravel for me—then it had probably already happened again without my noticing. There was a freedom in accepting that I had no control over it, and in accepting that the “bad things” had already happened. Because realizing that made me realize that my worry was useless. My worry wasn’t protecting me, it hadn’t protected me before. So why should I think it would protect me now? Realizing that helped loosen the grip of that existential terror just a bit.
For most of your illness, your brain was in a terrible fog, yet every page of your book is so intimate, so visceral, that it makes me wonder about how our memories work. In a way, the you that had recovered was writing about the you that was still in a fog. How difficult was this to come to terms with?
This book was extremely difficult to write, in part because of that reason. I wasn’t recovered when I wrote it; writing it was part of my recovery process. And so it was a real struggle. I didn’t feel too far off from that foggy, disconnected brain. I ended up having to do a lot of reporting on my own life—researching through medical notes from my physicians, plus text messages and email updates I’d sent while I was sick, and the odd journal entry I’d made when I had some moments of lucidity from time to time. The half-sentences I’d tapped into my phone here and there, and the strange bits of writing I attempted while sick—a fairy tale, it sounded like; a poem—were like cryptic messages from a ghost. Who was that person? What did that even mean? But I tried to use those, to help reconstruct that time, and recapture it. Probably the most difficult part for me in trying to write about it—aside from the things that every writer wrestles with in writing every book, namely, Is this any good??? Does this actually work???—was that I was trying to create a narrative of a time when I existed outside of narrative, unable to understand or even tell the story of what was happening to me. So the act of giving it a narrative meant revisiting that traumatic time, where my trauma had insulated me from fully experiencing narrative, and that in itself was traumatizing, too. It’s part of why I address so directly in the book the process of creating narrative, and the limits of storytelling, and the fundamental unreliability of narration.
Your rehab with the piano made me wonder yet again about the ways our brains work. Music soothes us, so does repetition and refinding what we knew before. You mention more than a few times that you are an unreliable narrator—but aren’t we all really unreliable narrators, our experiences colored by emotions
Yes, absolutely, even with the best intentions and the most thorough research and using the most precise language. The “I” that tells the story is always subjective. This fascinated me and troubled me precisely because of the way my experience of myself became so fraught and strange due to the dissociation caused by my physical condition. There were times when “I” felt absent, when it seemed as though my brain went on existing without the need for mind, and the process of healing felt like a gradual reintegration. But those moments of separation, of this strange clarity about the dual nature of brain and mind, haunted me, and really called into question who is telling the story when we’re dealing with a so-called first-person narration. During much of my illness, I felt like a second-person, the me that was Me tucked away somewhere while my first-person brain got on with the business of staying alive. Tackling this directly in the book, with those chapters that wrestle with the notion of unreliable narration, the way women in particular are often seen as unreliable narrators of their own history in the doctor’s office, and the desperate need for storytelling while acknowledging the crushing limits of storytelling, was my way of working through this.
I always wonder about process, usually if writers learn from their past novels or if every novel is a brand new terrifying thing to contemplate. However, your case is something very different, as you are trying to make sense of something that had no sense. But the question I want to ask you is more about your NEXT book. How do you think you will now approach writing differently?
I always tell people, when they ask for writing advice, that the best process is the one that gets the book done, and that each book teaches you how to write it as you go. That was hard advice to take myself as I worked on this book. It fought me every step of the way, and every day I doubted it, every day I thought about giving up. There was no moment when I read over something and thought, Yes! This is it! This is great! Instead, every day was slow and frustrating and filled with questions and uncertainty. A lot like healing. It was only in the end, once it was finished, that I was able to see it come together, and I remember reading those first pass pages with something it took me a moment to identify as pride—a word I would have never used to describe anything about my own work. I learned a lot about myself as a writer by writing this book, and it was a learning process getting to know my new brain, my brain post–CSF leak, my brain post-trauma. I’m excited to bring that to whatever comes next, and I’m glad to have had the humbling experience of working through something that seemed impossible and coming out the other side okay.
I have to ask: Are you feeling okay? Do you feel normal or is there a new normal?
I am definitely okay, for now, CFS leak-wise. The procedure I had to fix my spinal CSF leak worked, and although full recovery from that took a while (about two years for all the post-procedure symptoms to go away and for my brain to fully heal), I’m happy to say that I’m all better in that respect. My new normal is a bit complicated, though, as I’m dealing with a chronic health condition that was exacerbated by the CSF leak and has become its own problematic thing. So for now I’m trying to rest and relearn my limits and try not to poke the hornet’s nest of my own body being hypervigilant against itself.
What’s obsessing you now and why?
I started knitting about 9 months ago, when I was in the grips of this aforementioned health situation that limited my activity. Actually, I had learned to knit when I was little—my mom taught me to knit and crochet when I was 8 or 9. But a super talented friend inspired me to pick it up again, and after a visit to a cool yarn store near my house, I was in! Lately I’ve been trying to do a lot of lace—I finished a lace shawl for myself and I’m working on another one to give as a gift, plus I started a cowl with a bit of a lace pattern. It’s tricky and occasionally frustrating (and I never realized until I started doing it how bad I am at counting???), but it’s good brain-work, and in the end you have an actual thing you made that’s wearable and beautiful and kind of like a visual representation of what time looks like in yarn.
What question didn’t I ask that I should have?
I can’t think of one! These were all fantastic. Thanks for sparking this conversation!-->