On being creative within the constraints of chronic illness

I really loved your book. We have really similar experiences in certain ways - you totally captured that sensation of feeling like you’re crazy and everyone telling you, “It’s true, you are crazy.”

Your book was a reassuring memoir to me when I was in the editing process. I had initially started my book as a novel and had hangups about writing a memoir; yours was one of the first I read that was avoiding the trauma dumping, but also providing an honest account of something, particularly labor. I thought it was great.

Did you feel a lot of pressure to discuss your trauma in the book to help it sell better? Personally, it felt like something people were especially interested in.

Thankfully, my publisher was on board with both the memoir material and the story of this hysteria patient being presented as I wanted them to be. The context in which those stories happened were a lot more important to the book than the particulars of anyone’s life or trauma. Lately there’s just an insatiable appetite for the culturally-scripted trauma narrative. Trauma does come into the book, but in the context of Freud’s attempt to cure the traumatized at the level of the fantasy that makes the trauma adhere.

In the beginning of the book, all the different threads felt really disparate: the ballet, the sickness, the hysteria. It was so satisfying when they all came together.

The associative model works well when writing about illness because it allows the form to reflect the context: the brain fog, the interruptions of pain, interrogating your experience in front of others. It felt very natural just following the subject wherever it went.

My own self understanding doesn’t come from my own innate awareness of the body, or diagnostic categories. If anything, it comes from reading a lot. I’m really interested in what happens when we put text and images together in a way where the images then defy their documentary purpose—I hoped that including the images of this famous hysteria patient would be not only a visual aid, but generative.

You wrote about the woman in the photos before they appeared, so I had already formed a mental image of what she looked like. When the photos appeared, I was forced to reevaluate.

Photos bring you closer to the flesh and blood of the person, but also create distance because the image is being used toward artifice. Smoke and mirrors.

Was there anything in particular you were doing to ground yourself physically?

I’m very prone to dissociation and repression, especially when ill, so while writing, the challenge was more forcing myself to be present. As for grounding myself, I don’t know. I would take Adderall when I was editing, which made editing more possible, but it’s not exactly a grounding drug!

Whatever works!

It’s frenetic; good for editing, but not so good for writing. It’s not a very creative drug.

Wasn’t that Hemingway’s advice? “Downers when you’re writing, uppers when you’re editing.”

That’s how it is for me. Weirdly, weed is a great writing drug, which is something I only discovered after the pandemic.

Do you have a ritual of smoking weed before you write?

I don’t really smoke. I like to smoke, but I’m so asthmatic, so I’ll usually do just a quarter of an edible and try to keep the caffeine to a minimum. Do matcha instead of coffee.

I use weed for writing emails. I don’t know if I’ve ever used it when writing writing, but it totally makes sense. It turns off some censorious part of your brain.

Sometimes I forget that drugs can be taken in fun new combinations. I was very pleasantly surprised by how well weed and Adderall mix. Really nice.

Or caffeine! I’ve never had weed with Adderall, but I’ve done it with Modafinil. That one will really get you going, that’s for sure.

It’s fun to find those combinations, to see if you can maintain it for a while as you work.

How did you come up with the idea for the book in the first place?

I started writing about a woman suffering from mysterious symptoms in my fiction MFA, but it really lacked the propulsion necessary for great fiction. I also find writing about myself fairly mortifying. The book only started to take form when I found these ghostly, haunting images of the hysteria patients. They represent what became one of the core themes of the book: this very futile hope that pain could be made visual and demand to be seen. The images are of interest as art objects to many people, but that can be problematic. We like to think of these photos as having been created with agency, but the women were forced to perform their symptoms in the vain hope to have them alleviated. The images provided the occasion for me to explore outside of my own story: medical history, psychoanalytic history, and the pathologies embedded in ballet, which I grew up in. Almost like a collage. There was this tension between late capitalist malaise and the frenetic excitement of the association in the book.

The biggest challenge of this book was working through illness. The biggest trick was finding the form that suited that kind of restriction. Visual artists are probably much more accustomed to working that way. I have a lot of artist friends who say they work best with a set of constraints. Writing can feel so much more open. Finding the form was really finding the set of constraints for myself. That was really the biggest trick.

That’s so interesting. Do the constraints always feel like they’re about form, or do you work with sets of constraints as well?

They’re mainly about form and deadlines for me. I might try to experiment more going forward. You reviewed Stephanie LaCava’s book, right? I love surrealist language games—I should play more games with my writing. That might be a good future challenge.

Oh, I agree. Stephanie’s book is also generously edited for our short attention spans these days.

It really is. She writes a lot of the sentences that I want to write, but I totally can’t—anachronistic or very simple short sentences where what is unsaid comes through more clearly. I always end up writing these long, clunky sentences with em dashes and semicolons, and it ends up in a totally different place than it began.

The most collaborative element of writing for me is reading. It feels so much like collaboration that I try to stay away from reading stuff that’s too similar to what I’m working on, because I’m terrified of unintentionally plagiarizing. I want my work to be in dialogue with something perhaps less obvious.

How do you go about picking the books that you want to serve as disparate influences on your writing? Is it just what speaks to you or do you intentionally seek things out?

Honestly, aside from niche academic interests, I mostly read fiction. I read most of the New York Review of Books’ new releases, a lot in translation, and the recommendations of friends. When I find a writer who speaks to me, I read everything they ever wrote.

There’s nothing more satisfying than working your way through a stack of all of an author’s books. I was so distraught the first time I did that as a kid. Oh my God, I’m never going to read anything that speaks to me this way ever again. Did you do a lot of reading as a kid?

I did, which wasn’t really the norm in ballet where people don’t tend to read as much. I basically just did ballet and read 24/7. I was very serious. I think I have more fun as an adult than I did as a child.

I remember reading Duras for the first time in high school and thinking, oh my God, this is it. This is what a book can be. I was so interested in the fallibility of memory and she’s really into that smoke and mirrors game. She tells the same story over and over in many different ways from many different angles. I don’t want to be that way, but I might end up being that way.

Sometimes part of the work is pushing against your natural tendencies, which are still going to show through anyways. The real creativity comes in that tension.

Pushing against yourself.

If you lean too far into the surrealism, the fallibility of memory, then maybe it becomes too abstract. But if you push back against that urge, you get something very interesting. You did this in the book. At first, there was this miasma of all these disparate ideas: there was ballet, there was this pain you’re experiencing, there was this writing about hysteria, and it was all swirling around, until eventually it crystallized very beautifully and you could understand how all of the elements fit together and why they were things that you were thinking about so much. Sometimes you need to wander around in the fog.

That’s my hope. When I’m reading a book that’s kind of acutely aware of the fallibility of the first person point of view, I appreciate a little bit more context.

I really loved it. It’s a book about how your body is betraying itself, about an illness you don’t fully understand; naturally it will be disorienting and confusing.

It’s like the old writing class adage: showing, not telling. You can show your reader you’re disoriented better than you can tell them.

Did the process of writing this book feel cathartic?

I don’t find writing especially cathartic. It feels good to be done. I got to the end. It’s so hard to know the beginning or the end of a story about a chronic illness—it’s never going to go away. Having the constraint of a deadline, knowing there has to be an end point, was itself a bit cathartic. I can move on to a different story now. Or try to.

You wrote that when you were young, you felt that flavors hurt when you ate and had a challenging time explaining that to your mother. Was it hard to capture in words the sensations that you were experiencing?

Yeah, definitely. There was a book in the ’80s, Elaine Scarry’s The Body in Pain, that explored how pain destroys language. It’s harder to describe than most things that we experience, perhaps especially so with chronic pain. The usual one-to-ten scale isn’t especially useful. I agree with Anne Boyer that it’s very convenient for a world which doesn’t want to see or hear about pain to render it invisible or indescribable or destructive of language.

It became a question of context. I can’t necessarily tell you exactly what my arthritis feels like, but I can tell you more about the context in which I experience it.

Writing about my own pain still feels hyperbolic or melodramatic. It brought up so much shame. I was anxious readers would think I was faking it, which obviously reflects whatever medical trauma I have.

Totally. Trying to describe it does feel hyperbolic. You’re trying to say, I’m suffering so much it feels like I’m dying, this is the worst thing that’s ever happened to me. Writing about the emotional pain of medical disbelief, skepticism or dismissal can communicate more to the reader than just trying to describe a physical sensation.

Everyone understands shame. The shame that I felt about not being believed and being told that I was crazy was just as bad as the pain. Maybe worse. Once I finally saw doctors who really believed me, the pain became more manageable because I was actually getting the right treatment, but the pain also felt more manageable because I was believed.

That’s both the benefit and the fraughtness of diagnosis. I’m skeptical of diagnostic categories—they can’t really recognize anything about our humanity or suffering. I don’t think they’re liberatory. But at the same time, they’re means of accessing care. That’s what we have to acquiesce to if we need care. You may feel seen or recognized, but it’s a fraught recognition. I don’t have any answers.