Zibby Owens: I’m here today with Andrea Buchanan, who goes by the nickname Andi, who is a New York Times best-selling author. We’re talking about her book, The Beginning of Everything: The Year I Lost My Mind and Found Myself. She’s also the author of ten other books including The Daring Book for Girls and Mother Shock. Before becoming a full-time writer, Andi was a concert pianist. She currently lives in Philadelphia with her family.

Welcome, Andi. Thanks for coming on “Moms Don’t Have Time to Read Books.”

Andi Buchanan: I’m so glad to be here.

Zibby: Thanks for being here in person too. This is so great.

Andi: My pleasure.

Zibby: Your memoir, The Beginning of Everything: The Year I Lost My Mind and Found Myself — PS, great title. How can you not want to read a book with this title? Tell listeners what it’s about. What inspired you to write it?

Andi: It’s a book about a lot of things, but primarily about the year that I experienced a pretty profound health crisis when I had a spontaneous spinal CSF leak, which unbeknownst to me is a thing that can happen.

Zibby: CFS, cerebral…

Andi: Cerebral spinal fluid. I had a flu. I had a high fever. I had a cough. I coughed one day. Then unbeknownst to me, that was enough to make a tear in my dura mater, which is the tough protective membrane that covers the brain and spinal cord. This tear was large enough for my cerebral spinal fluid to begin leaking out, which is a bad thing. I didn’t know that’s what was happening. I had a terrible, terrible headache. I thought maybe I just still had a flu, still maybe had a sinus infection. I saw doctors who told me I had migraines or sinusitis. Then eventually after going to several doctors and telling them that I had noticed that I felt better when I laid down and worse when I stood up, somebody connected the dots and said, “This sounds to me like a CFS leak.” It took me about nine or ten months to find an actual doctor who knew that I definitely had a spontaneous spinal CFS leak, knew how to treat it, and knew how to fix it. For that year basically, I was mostly bedridden. I had a headache pretty much 24/7. After a while, even laying down didn’t make it feel better. I couldn’t read, couldn’t write, couldn’t watch TV, couldn’t remember my kids’ birthdays, sometimes their names. I was really, really cognitively compromised. On top of everything, I was going through a divorce. It was a big year for me.

At the time, I wasn’t really able to think about how any of this felt because I didn’t have the capacity for narrative. Things just happened, and I accepted them. I really didn’t have the brain power to think any more deeply than just what was happening on the surface. In moments of lucidity after I’d had maybe a steroid injection or a treatment that helped for a little while, I might have thought about how scary it was or worried about what my future would look like. Most of the time, I was just in too much pain and too out of it to really understand. It was only when I started to feel better that I started to grapple with those questions. It was about maybe six months after I had my procedure to fix the leak that I first was able to start writing about it again for real, which was difficult but also a relief. When I was very sick, I wasn’t sure that I’d be able to write anything ever again, at least not in a book form.

Zibby: Wow. You do such a great job in the book of mixing a lot of the science-y explanations. I feel like I learned a lot more about even how the body works. I haven’t taken science in quite some time. You wove it in as you were going through this odyssey of figuring out what was wrong with yourself. If you’re only there in the moment trying to figure everything out, how did you go back to write about it in such detail? It’s almost like you were just a fly on the wall watching this happen to you. How were you able to…?

Andi: In some ways, that’s what I kind of felt like. The me that was me was this tiny, tiny speck that was like a fly on the wall watching everything happen. When I was trying to figure out, how do I write this book and how do I tell this story, that’s kind of where I started. I’ll just zoom in on these moments and go from there. I had to do a lot of research on my own life. I had to look at medical notes from doctors’ visits. I had to look at the CT and MRI and other procedure results and interpret those. I had to look back on emails I’d sent to my family in moments of lucidity just giving them updates. I had some text messages I’d saved. When I was trying to look for clues about what exactly I’d experienced, I even came across some writing I’d tried to do, which was completely nonsensical. I didn’t even remember having done it. I had to do a bit of investigation. Out of these breadcrumbs, I had the dates and times of appointments, and emails to friends and family about the results, and some other things that I’d jotted down at the time. I was able to kind of recreate that journey. It was tricky. For me, it called into question what I think is the real fundamental question of memoir anyway, which is, who is telling this story? How much of it is true? What is truth? What is the self? Who’s the I that’s doing this storytelling? I talk about that a lot in the book because it’s so interesting to me and because my experience was very much about that, that questioning of, who am I if I can’t think, if I can’t use words? I’m a writer. Who am I? If I’m not there, who am I?

Zibby: What’d you come up with?

Andi: It was an existential crisis. I realized that I had all along thought that I was the person driving the car, and I’ve been a baby in a toddler seat in the back with a pretend steering wheel this whole time. Buddhists talk about this self and non-self. I had this amazing experience of really being able to observe the self going on without me. If I hadn’t been in the midst of a terrifying illness and incredible pain, that might have been a crazy intellectual revelation, but it just felt discombobulating. It felt like groundlessness. It wasn’t the kind of groundlessness that I could experience sitting on a yoga mat and feeling safe and protected. It was like, this is my life, and nothing is what I thought it was.

Zibby: How does that impact your day-to-day life and decisions now? Does it?

Andi: Yeah. It’s hard not to come away from an experience like that and not have it linger. In the very beginning, I felt very raw walking around. I felt like I’d been to the moon and back. Nobody could tell from the outside that I was different, but I felt like everything had been — this has been a world-shattering event. I was also really anxious, or not anxious, but conscious of the fact that this could happen again. This wasn’t my one thing and now nothing bad will ever happen to me. That was a little bit anxiety-provoking. On the other hand, it was also a little bit of a relief, like, well okay, this has been the worst thing that’s ever happened to me, and I’m okay now. Another thing will probably happen too. I’ll probably also be okay, or maybe not. It’s not up to me. So this process of being kind of vigilant about worrying about it but also being able to kind of relinquish this because it’s truly out of my hands. I spend a lot of the book trying to retrace my steps back to the beginning of everything, hence the title, to figure out where was that moment that I could’ve undone? I had for years, even up until this year, I’ve had these night terrors where the theme is I forgot to do something. Now everything is horrible. The world is ending. People I love are dying. It’s because I didn’t do this one thing that could’ve saved everybody.

That was a theme that I was grappling with when I was ill. In trying to create a narrative around this time, where’s that one thing? There wasn’t just one thing. It was the combination of a myriad of things that I could never tease out to one tiny factor that I had any control over. I think that’s true whether you’re grappling with an illness or a life-changing event or even a happy thing. There isn’t the one thing that you have complete control over that can determine whether or not everything’s going to be fine. In the immediate aftermath, I was very careful. I didn’t want to cough. I didn’t want to have a cold. I didn’t want to bend or lift or strain. There’s no more yoga for me. There’s no more headstands. There’s no more rollercoasters, no weightlifting, nothing that’s going to put stress on my dura because I don’t want this to happen again. Every once in a while even now, I’ll carry groceries up the stairs and think, is this the moment that I’m going to look back on and think, oh, I shouldn’t have done that? On the other hand, I can’t stop living my life. I do have to keep going because what is the other option?

Zibby: Wow, that’s a lot to carry around with you every day. I also thought it was great in the book — you are a former pianist, professional concert pianist. I don’t know the right lingo for what you are, but gifted pianist professionally. You used music in a way to find yourself again and to reignite those neural circuits and get back to where you were before when you were teaching yourself how to play the piano and following your old notes. Tell me about how the piano helped you find yourself again too.

Andi: One of the frustrating things about this disorder in the first place is that there’s very little research about what patients’ experiences are like in terms of how long they suffer before they are fixed and then how long the fix works, how long that holds. There’s not any research about what the trajectory is like after you’re patched up and repaired. There’s just nothing about once you’re okay, how to get back to baseline. It’s not like you’re sent home from the hospital with a list of things, like, here’s the kinds of the things you can do for somebody who’s had a brain injury or a concussion. There’s nothing like that. I was kind of adrift when I was recovering from this, not sure if I was actually okay, or how long this patch was going to hold, or if this was the real fix, or if this was just a step towards a real fix. Once I was able to start reading again, I began to read a lot about the experiences of stroke survivors, about the experience of TBI survivors and concussion survivors, and a lot about neuroplasticity. When I read about the neuroplasticity research about the brain, what they described in the context of rehabilitating stroke patients was the focus on very small repetitive movements, in the case of a stroke patient with the damaged hand or side of the body. What I read was that this kind of sustained focus practice with very small muscle movements was really integral in creating a kind of plasticity or taking advantage of the plasticity of the brain to create these new neural pathways.

That seemed very interesting to me because it reminded me, that description of this small muscle movement and focused intent, reminded me a lot of practicing piano. As somebody who’d been practicing piano for thirty years, I thought this might be a way for me to help my brain get better. Definitely, the top things they say are to sleep and to rest and not do anything to overexert yourself. After those things, I would say that playing the piano was the number-one thing that helped my brain get back to where it was. I wasn’t able to tolerate sitting very much at first. Sitting brought on a pretty bad headache. Once I had been fixed and my leak was gone, I still had these aftereffects to deal with. I thought, I’ll sit at the piano with this piano posture. That will maybe help me tolerate sitting a little bit. I’ll do some very basic old exercises that will make me really have to concentrate and really focus on one finger at a time. I started out really small, like five, ten minutes at a time and working up to maybe a half an hour at a time. Then I started being able to go through older repertoire I had and then things that I’d learned more recently.

It served a dual purpose. It not only helped rehabilitate my brain, my piano brain-training exercise, but it also helped me reconnect to myself. I was going through and playing pieces that I played when I was eight, when I was ten, when I was thirteen, when I was seventeen and at the Conservatory, when I was twenty and I was at graduate school, when I was twenty-six and doing a Carnegie Hall recital. The process of going through that repertoire was not just practical, but also an emotional experience as well because I had really struggled with a sense of, who am I? As I said, who am I if I am out of commission? Being able to go back and revisit these kind of snapshots of who I have been through my whole life really helped me establish a feeling of a continuity of self so that I could see I’ve always been there, which was very useful.

Zibby: You mentioned you were going, and it’s obviously a lot in the book, but that you were going through a divorce at the same time. How did that play into everything? By the way, I felt like your ex-husband, given that you were going through a divorce and having been through a divorce myself knowing how that can stir up certain feelings and all the rest, how he was really helping you quite a bit, especially with all the medical stuff. I don’t know if that was a conscious decision, if that was the “question mark” truth of a memoir or what. Tell me a little more about that relationship.

Andi: One thing that was really important to me when I was writing this book was I did not want to tell other people’s — obviously, I have to tell other people’s stories because there’s other people in my life, and they’re not writing this book. I am. I didn’t want to tell other people’s stories too much. I didn’t want my version of somebody else’s story to become the official story of record because I am the only one writing this particular memoir. My ex-husband isn’t writing his own, that I know of. It was very important to me to be fair. It was important to me that whatever I write not contradict anything that perhaps was the story that my children knew about the end of our marriage. I will say that that was something that was important to both of us. Our primary concern was that the children have a positive experience, that we be as amicable as possible. But of course even in the best-case scenario, it’s still really difficult. I didn’t want this to be a book about my terrible divorce or my stressful divorce or my whatever divorce. I wanted that to be a part of the story, but I didn’t want to focus everything on it. I really tried to do my best to be fair in how I told the story. Luckily, he was somebody who was very helpful in connecting me with some medical professionals who were then able to connect me to other professionals who actually knew about what I was dealing with. For that, I was very grateful.

Zibby: It really reiterates how terrifying the medical field can be if you don’t have some sort of an advocate. I was so grateful when he would swoop in and help you when you were floundering. I’m thinking, what if she hadn’t been married to a doctor?

Andi: Right. That’s what’s so striking about all — I’ve spoken to so many patients or former patients suffering with spinal CFS leak. It is so difficult to be taken seriously, even for the patients who are men, but especially for the patients who are women. It’s so difficult to be taken seriously, especially if you’re talking about pain as a woman. That’s made even more difficult by the fact that there are so few experts in this disorder. It’s kind of a cliché story at this point that the people that this happened to spend a lot time being disbelieved and misdiagnosed and have to become advocates for themselves at a time when their brains are so compromised. They can’t do anything. It’s symptomatic of a lot of problems with our healthcare system that patients have this burden put on them at a time when they are not in their right mind or their right health. They don’t have the energy or the resources or the connections or the luck to be able to do this kind of thing all the time. It was very frustrating. I spent a lot of time on very confusing phone calls with insurance companies just sobbing.

Zibby: They should have just a sobbing hotline.

Andi: They should.

Zibby: Insurance recovery hotline.

Andi: Or a patient advocates hotline where somebody else can take all the information and bring it to the people who are going to, rather than having —

Zibby: — They must have something like that. I don’t know.

Andi: They should.

Zibby: They must. I don’t know. We’ll have to look. I just wanted to read one passage from your book that stuck with me and I thought was beautiful. You said, “I’m not performing yet. I am somewhere in between the chaos and the finish. I am recovering, and so I can start anywhere. I don’t need to know where the beginning is. I don’t have to determine where it might be. I don’t have to choose a precise moment when it all started and when it all went wrong because in practicing, it doesn’t matter. And the more I practiced, the more I see that in life it doesn’t matter either. I pick a point and work from there, and that’s the work. That’s the point. Every day I work a little longer, increase my stamina, nourish my brain. And every day it helps me stop the futile quest for the answers to everything, which of course could never be located in one perfect, precise moment. Every day I continue to start where I am because I’m not performing, not yet. I’m practicing.” Wow, that was amazing. It’s like that’s the meaning of life right there. Thank you very much, Andi. Tell me a little about that passage. I know we spoke already about your quest to find the beginning.

Andi: This is from a chapter where I’m talking about the importance of my piano brain rehab and the benefits of practice in general. It’s interesting. When I used to teach piano, that was primarily what I was teaching people, whether they were little kids or grown-ups. What I was teaching them was how to practice because you don’t know how to practice. In reminding myself how to practice by going back to this old stuff and sitting at the piano and trying to work through this stuff in a really focused way, I was really reminded of the work of practice, which has always felt to me like a metaphor for life. This was pretty on the nose for me, this notion of when you approach a piece of music, you can play it all the way through from beginning to end, but if you’re really going to practice it, you should start somewhere in the middle. You should start at a place that’s hard for you and work on that first. You should pick a small section and just focus in on that. Then later on, you can extrapolate to how that matters to the rest of the piece. In this moment of practice, you’re not working on the whole thing. You’re just tackling this one small thing. Starting where you are, or starting with what’s hard for you, or starting with your least favorite part, or starting with some place that’s tricky, that’s where I was when I was suffering with this condition, when I was writing this book, which was .

Zibby: I was going to ask. It sounds like you could apply this whole section to writing.

Andi: Yeah. It was a really useful way for me to think about living in my life too where I also can’t start from the beginning and play it all the way through. I have to be where I am. I have to tackle these things that are hard for me and not have answers and only be able to look back later and say, ah, that’s how it all fits together. This was a reminder to myself as much as advice to anybody else.

Zibby: Tell me a little more about writing the actual book. How long did it take for you to write this book? Where did you sit and write it? Do you like to write at night or in the morning?

Andi: This was my eleventh book. Twelfth? Eleventh book? It was almost like it was my first book. It was the hardest book I’ve written, for sure. Normally, I’m a very fast writer. I don’t usually have to do many drafts, but that was not the case with this book. It was not easy. It was not fun. When I first wrote the book proposal, that was the first big piece of writing I’d done since my injury, or the CFS leak. That, I wrote maybe about nine months after I had the leak fixed. It was so exhausting for my brain and so difficult. I’ve written a ton of book proposals before, but this was like… When I sent it off to my agent and then we got an offer for the book, I was like, oh, no. I thought I was done, but now I have to write a book. I hadn’t thought this through. Then I was very scared because I thought, I could just barely do this thirty-page proposal. How am I going to do this whole book? My brain is just not ready for this. I kind of put everything off for a little while. I did a lot of mulling. I was still very much having to spend a lot of my day in bed at that point. I set up my little writing station in bed. I took notes. I did a lot of thinking.

Then I eventually decided to do kind of actually what I was talking about in that passage you read which was to pick a point and zoom in and write about that. Then I’d pick something else and write about that. Then I made like a CSI murder board on my wall of all these different points that I wanted to write about. Then I clustered those points into bigger Post-it notes that were more organizing concepts. In the beginning, it had to be a very visual process like that, which is not normally how I work. Normally, I just can picture stuff in my head, and I’m good to go. This, I really needed to physically move things around. The actual writing of it was very difficult. I checked in with my therapist who I’d seen while I was very ill to just check in, see how I was doing, and where I was with the book. I told her normally when I’m writing and I come up with this kind of resistance — not the kind of resistance where it’s like, “Oh, maybe I should look into this a little bit more. This is a question that’s begging to be answered.” This kind of, “This is terrible. This is not working,” these are the kinds of things where if I encountered them in another project, I would say, “You know what? This isn’t going anywhere. I need to work on something else,” but that’s not what’s happening with this book. It’s just everywhere I turn as I try to write it, it’s really, really hard. I can’t give up on it, but I don’t know what else to do.

She kind of laughed. She was like, “Wait, so you’re telling me that a book about a time when you thought you might die or never recover your brain ability is difficult to write?” I was like, “I guess when you put it that way…” She had a good point. She was like, “This was a traumatic experience. It is retraumatizing to write about it. Frankly, I’d be concerned if you were like, ‘Yeah, it’s going great.'” It was a challenge. Here I was trying to take everything that had happened, which had happened for me the first time around outside of narrative, and put it into a context and give it narrative, find a beginning, middle, and end, which I had just kind of come to accept does not exist. Doing that and writing through it and even picking points and starting here and there was really hard because it was the first time I was experiencing it in a full way where I was thinking about what had happened and implications and everything. It wasn’t just the moment of being in pain and feeling the experience, but really trying to make a story of it. It was like it was happening all over again. It was a challenge. It was definitely the hardest book I’ve ever written, but I think it’s the book I’m most proud of.

Zibby: How long did it take to write?

Andi: It felt like it took forever, but I realize when I say this that other writers will be like, excuse me? I procrastinated writing it for months and was just mulling about it. I started writing it in full force in May of 2017. I turned it in mid-December of 2017.

Zibby: That does not sound long to me. Wow, but that’s amazing you wrote all —

Andi: — For me, that felt like a really long time. Actually, when I look back on it now, it’s like, what? Just because I felt like I’d wasted a lot of time agonizing over how difficult it was to write doesn’t mean I was doing nothing.

Zibby: It was really, really good, from the introduction on. I think I wrote you, “This is the best introduction I’ve ever read.” You’re in it. It’s not just the narrative. It’s the emotional reflection and the science and the visuals. It was really good. You should be really proud of it. It was really, really good.

Andi: Thank you. I’m so glad you liked it.

Zibby: Do you have another book coming?

Andi: Right now, I’m just in the middle of trying to figure out what’s next, so mulling still.

Zibby: All right, which means you’ll have a book in like two months.

Andi: Oh, I wish.

Zibby: The mull to production ratio, productivity ratio or something. Do you have any advice to aspiring authors?

Andi: There’s two things I usually tell people. I definitely had to take my own advice when I was working on this book. One is that the best process is the one that gets your book written, so whatever that is, whether it’s a murder board or writing in bed like I did most of my writing, although I did sit at a café and write sometimes too, or writing at a particular time. Whatever it is for you that gets the book done, that’s the process. Then the other thing I tell people is that each book that you write teaches you how to write it as you go. That was probably the hardest bit of my own advice to take with this book because what it taught me was that it was not going to be easy. It wasn’t going to be a fun process. Even if I couldn’t trust in the moment that what I was writing was any good, I just had to keep going. I think sometimes we can get kind of lost in the feeling of, ooh, I just wrote something really good, or you wrote three thousand words you feel great or whatever. Writing isn’t always like that. You don’t always get the high of, I did it! Sometimes it’s not until you’re looking back on the book in a galley form where you’re like, oh, wow, this is actually a book. I did it. That’s my advice. Learn to write the book. The book will teach you how to write it as you go. Whatever process works best for you is the best process to write it.

Zibby: That’s like what people say about the gym.

Andi: Oh, really?

Zibby: Like, when’s the best time to work out? Whenever you actually will do it.

Andi: Or like when people say, when’s the best time to have kids? There’s no good time. You do it or you don’t.

Zibby: Interesting. Thanks, Andi. Thanks for coming in. Thanks for being here in person.

Andi: Thanks for having me.

Zibby: Thanks for this really great, great book. It’s really great.

Andi: Thank you.

Zibby: Thanks.