On a bitter March day in 2015, Andrea Buchanan was sick with a virus. In the middle of an intersection, on the way to have brunch, she coughed so violently that, unbeknownst to her, she tore the membrane covering her brain and spinal cord. Her cerebrospinal fluid began to leak from this tear, and over the course of the next nine months, she would be bedridden, wracked with pain and befuddled by brain fog, until she found specialists at Duke University who understood how to mend her leak.
Through all of this, she was going through a divorce and raising two teenagers, whom she tried to shelter from the severity of her pain. Trained as a classical pianist, Buchanan returned to playing the piano as part of her neurological recovery.
The Beginning of Everything, out tomorrow from Pegasus Books, is Buchanan’s eleventh book. Recently, we talked about translating the experience of illness for those who don’t speak its language, how certain experiences in our lives can feel like rhyming couplets, processing trauma through narrative, and the relationship between playing music and writing.
The Rumpus: The memoir ends in January 2017. How are you doing now?
Andrea J. Buchanan: Overall, I’m doing much better than I was a year ago. So far, I’m still not leaking anymore.
I’ve been volunteering with the Spinal CSF Leak Foundation. I interviewed a couple of patients and both of them had these stories where they were okay for a while and then four years ago, they started leaking again, and I was like, “Uh… can you tell me a little bit more about that? Let’s go back to that part where everything was fine and then it all turned out horrible.”
It’s only been recently that I’ve been thinking more than a week ahead in the future.
Rumpus: Narrative is such a big part of this memoir. It’s interesting to hear you say that when you find these other people who mention having another leak, that you ask them, “When did it start?”
Buchanan: Having a narrative helps ground you in the experience because it’s so strange. Even the doctors can’t really tell you what’s going on. For me, and for a lot of people that I’ve encountered, we’re grasping for a context to ground this in. Any sort of story that might point to what this experience might be like for me—it’s so hard to be able to project into the future when you’re in something really uncertain like this.
Rumpus: As a writer, you’re drawn to seeking a narrative. You write, about being at Duke: “There is a relief in telling this particular kind of story to a group of listeners who know exactly what you’re talking about.”
Buchanan: Whether I was very sick, or when I was beginning to recover and rejoining the world, I didn’t even really feel like I had a place to start, in terms of telling people what happened. It felt so big. Being at Duke, where people had an automatic understanding of what I was experiencing, was almost like a shortcut to acceptance. I didn’t have to frame it for anybody. I didn’t have to try and explain these mysteries because to them, it wasn’t mysterious at all, which was such a relief.
As opposed to my normal life, where I might run into somebody at the store and they’d be like, “Where have you been for two years?” And I’d be like, “Well, I coughed…and I got divorced…” How do I even begin to explain what happened?
Rumpus: What do you mean by “big”?
Buchanan: The whole experience felt intangible and in order to explain to somebody what it was like, I had to translate it from this other language that they didn’t know. It felt impossible sometimes.
Trying to describe your pain for someone else is like telling them about a dream you had. Everybody knows what it’s like to have a dream but it doesn’t matter to anybody except the dreamer what the symbolism is, and what the feeling was like when you had the dream. That part is untranslatable. To try to communicate to someone else what was happening to me felt similarly impossible to translate.
Rumpus: You’re translating an experience of sickness for the world of wellness.
Buchanan: I felt like recovery equals forgetting. In order to be truly “well,” you’re supposed to be completely beyond whatever had happened to you. You’re supposed to be back to normal and forget what all that was like, but that’s hard to do. On the one hand, I didn’t want to forget what it was like, just in case it happened again. I didn’t want to lose touch with that place where I had been existing for so long because I felt like it would be harder to go back to if I completely left it. And also, it felt like tempting fate to be like, Yeah, I’m all done now! I don’t have to think about that anymore!
It felt almost dishonest to pretend like nothing had ever happened. Worse than that, impossible to return to some kind of “normal” life without the knowledge of everything I’d experienced. That was difficult, too, when I was starting to feel better, to juggle the worlds of the sick and the well, and also because I didn’t know if I would be able to stay in the well world for too long, whether it was just a day pass.
When I was first asking the doctors, in the best-case scenario, if I’m fine and this is fixed, how long would it take me to get back to “normal”? They reframed that as, “Here’s how long it could take you to get back to baseline.” So then I was thinking, What does that mean? I can’t return to the place I was before this happened but what I kind of realized was, I spent so much of my time when I was very sick trying to look for the start of everything, like I could somehow control the narrative or find the narrative for it. If I could figure out the beginning of this, then I could figure out the ending.
Even when I was starting to recover after my procedure, I was still puzzling over how did this start? Why did this start? What did I do to make this start? I was fixating on that to the point where I was missing out on the fact that I was at the beginning of something else.
Rumpus: And at the same time, you were getting a divorce.
Buchanan: Just a few months before getting the leak, we had started divorce proceedings. We hadn’t told the kids about it. My kids were twelve and fifteen, so they were in the space that feels like everything is changing and everything is out of your control, developmentally—this crucial time of establishing identity. And then all of a sudden, I, the person who was their primary caregiver, was absent with pain. I had to be in bed. Even when I was upright with them, my brain wasn’t working. It was a scary time for them. And then to learn that our family would be reconfiguring itself in a really dramatic way was even more scary.
Rumpus: When I teach memoir, I’m often asking my students to choose which is their A story and which is B. I thought you could have written a completely different book about a woman getting a divorce who happens to have this pain and then the pain could be the metaphor of the divorce. But that’s not what your book is. The illness and the pain and the mystery is the primary story.
Buchanan: I didn’t want this to be a story about my divorce or my marriage breaking up after twenty years—in part because it’s not fully my story to tell.
My first couple of books were memoirs about motherhood and feminism. My kids were very, very little. I stopped writing about them once they became old enough to read about themselves. My daughter is in college now; my son is fifteen. They could read about this. So I didn’t want to tell a story that would conflict with the story that they’ve told themselves. The fact that I was getting a divorce at the same time that I was suffering from this illness that compromised my cognitive function really brought up these existential questions of, Who even am I? Who is in charge of this body? To me, that was what was sadly fascinating about it. I’m going through a huge identity shift and then, surprise! I’m also going through a neurological, biological identity shift.
Rumpus: There seems to me to be a link between searching for a cause and that leading you to blame yourself. You say, when you’re nineteen or twenty and struggling with undiagnosed ME/CFS, “Have I actively chosen to be like this? Is it serving me in some way, is it useful to me somehow? Am I choosing to be sick? Is it easier to be sick than it is to fail?”
Buchanan: Those were things that haunted me when I was sick with this spinal CSF leak. If you did not know that there was some sort of structural problem causing my cerebrospinal fluid to leak out and you just saw that here I was, having to lie in my bed 24/7, because I literally could not function, then you might think, Well this is a person who can’t handle the terrible things that are happening in her life.
Even though I got a general diagnosis fairly quickly, I wasn’t able to get treated for nine or ten months. That was a lot of time for me to wonder, Is this some sort of wish fulfillment, like everything is terrible and I wish I could rest so I have a headache that won’t go away? Because that sort of attitude is the familiar one from lots of doctors when you show up with pain that they can’t locate the cause of. It’s hard not to turn it back on yourself as something that you can have power over, or will yourself through.
It’s also tempting to think about it that way because if it’s in my control, then that means that I can be free of it. It’s a bonus. You get to blame yourself for being sick but also blame for yourself for not being well.
Rumpus: I feel like there’s this sad irony between chronic pain and depression that both are things that can’t be seen. That you have to convince someone of how bad it is.
Buchanan: There’s the legitimacy that you get when there’s something structurally wrong, versus something that can’t be found. It’s not fair.
Rumpus: When your son was three, he touched his wet hands to the power cord of your laptop, started seizing from electrical shock, but thankfully survived. Your daughter, six at the time, saw the whole thing. You talk about how she coped with it by repeatedly asking to talk about “how Nate died.” You write, “And I knew that was her way of processing, to create a narrative to understand the trauma and thus tame it.”
Buchanan: That was actually the first time I’ve written about that experience with my son. After that happened, I stopped writing. That was the time when blogs were very popular and I was a big part of that mother-writer community and I just stopped. I felt like, how could I write anything, especially since he almost died on the cord attached to the thing I use to write about my life and theirs? It felt wrong.
The one thing that has always stuck with me about that time was talking to my therapist and my being very worried about the experience of the kids and this being traumatic and her telling me, “Trauma does not have to be traumatic.”
That changed my mind about a lot of things and it’s something I return to a lot because I think it’s such a fascinating way of looking at it. That happened when the kids were three and six and now they’re fifteen and eighteen and while it’s an experience they both remember (albeit in different ways), it’s not something that they think of as traumatic, which of course you can’t know at the time.
It’s always been my parenting philosophy that I try to follow their lead and meet them where they are. I didn’t have any experience with helping a kid through something traumatic at the same time that I was trying to recover from something traumatic and it was difficult to be there and stay with her through the ways that she needed to recover from that experience. I write about how, for me, I couldn’t stop thinking about it. I had intrusive thoughts about it and I didn’t want to have to talk about it or anything. For her, all she wanted was to talk about it! So that was hard and that’s why we came up with… just tell it like a chapter and we’ll close the book and we’ll do it again tomorrow night, because I couldn’t handle it in any way bigger, but I also realized she couldn’t handle it in any way bigger. She wanted to talk about it but it was big. It was too big to get her mind around and so we had to do it in small bites, and that was all I could handle anyway.
Rumpus: Writing a book is like learning a really difficult piece of music because you can hear it and you know you can do it, but then it’s much harder to actually learn it. With a memoir, you’re like, how hard could it be? I know the story.
Buchanan: Back when I was in music school, you learn a bunch of repertoire, and then you do a recital and play for two hours in front of people and then it’s over and you have to learn new stuff. And learning a new piece always felt like I wasn’t just learning a new piece—I was learning to play the piano from the beginning.
Whenever people ask me for writing advice, I always tell them that every book feels like the first book you’ve ever written and the last book you’re ever going to write. You have that panic of, How can I possibly do this? I don’t know how to do this! And also, No one will ever let me do this again.
The other thing I always tell people is the best process is the one that gets the book written. Just because you’re the same person doesn’t mean you’re going to have the same process, because every book is different. And every book teaches you how to write it as you go.
And yet, this was really hard advice to take because this book was so hard to write. Before I got sick, I was a very fast writer. I had no problem writing 3,000 or 5,000 words a day. I could have an idea and write it down and that was it! I didn’t have to do too much to it. And this was not like that. I had false starts; I was blocked (which I never like to say). I had so much resistance to actually do this work sometimes, and normally, slowness, feeling like I couldn’t do it, or actively resisting the work of doing it—all of those things would be signs to me that I’m on the wrong track. I need to put this aside and think about it differently. But for this book, it was a sign that I was absolutely on the right track.
Rumpus: And can you differentiate between how much of this was psychological (you didn’t want to write about it) and how much of it was neurological (you were still physically recovering from what had happened to you)?
Buchanan: When I checked in with my therapist and was like, “I can’t do this; every time I try to do it, I shut down,” she was like, “First of all, of course. You’re writing about a really traumatic experience and it’s re-traumatizing to write about it. You’re revisiting some really tough stuff and you were not all there, cognitively, the first time around, to fully experience what that was like. I’d be really surprised if you were very excited about writing this and feeling great.” So that was comforting.
Also, when I first started trying to write about this, I still had a lot of issues with executive function. After I started my piano brain therapy, I was able to hold ideas in my head and remember them and connect concepts and that was really exciting—to really feel my brain working like that.
Eventually, I did a sentence here and a sentence there. When I had a good day, I would write a lot.
I couldn’t edit on screen; it was overwhelming. I literally had to print it out, cut it up, move things around. When I told a writer friend about this, she was like, “That’s how I work. I don’t have brain damage but…” It was a different way of working for me and it was hard because I didn’t know how to do this.
The more I did it, the better I got at doing it and the longer I could do it.
What I ended up doing (and this isn’t a process I used for any other book) is… you know those murder boards they have on CSI where there’s strings connecting pins? I kind of had a murder board for my book on my wall made of giant Post-it notes and I’d write one big idea, like “self,” and then I’d put little Post-It notes in a constellation around it with all the things that touched on the sense of self when I was sick. And then another giant Post-it for “illness.” So I had a constellation of these Post-it notes all over my wall. Basically what I would end up doing is picking a point, zooming in, and writing about that, and then I’d pick another point, zoom in, and write about that.
That was how the process began. It felt fitting to me because, when I was sick, I couldn’t see a big picture. All I could see were these little points and I couldn’t connect them all.
It was such a hard process the entire way through. There was never a moment when I thought, “This is great! And it’s exactly what I want it to be!”
A couple weeks before I finished the book, I had this dream that the leak was back and I went back to Duke and they did some exploratory thing and were like, No, sorry, we can’t fix this. You have three months to live. In my dream I was like, Oh my God. I don’t have to write the book anymore! When I woke up, I was like, What is wrong with you that you’re actively hoping for the sweet relief of death so you don’t have to finish this book?
Rumpus: Isn’t that so common? That there’s a fantasy not only of success but of failure?
Buchanan: This is my eleventh book and it feels like my first. I remember how strange it felt to be allowed to write my first book and then that sense of accomplishment when it was done. This felt like such a milestone, to be able to actually do this. That first year of my recovery was spent relearning piano (my neurological rehab, getting my brain back into shape). The next year was writing this book. It was just as important to my recovery and my rehabilitation. It was really hard but it was really valuable.
There’s value in being able to give your life a narrative, especially to contextualize a traumatic event. This experience, which called into question all the basic facts of What is a self?, was for me especially fascinating and challenging and ultimately reassuring to re-encounter that self on paper.