I read Tender Points (Nightboat Books, 2019), Amy Berkowitz’s book-length essay on fibromyalgia and trauma, when it was first published by Timeless, Infinite Light in 2015. I’d started work on my own chronic pain-focused essay collection, Codependence, the year before and was searching for a book that represented the mundane, never-ending ache of the intractable pain that Berkowitz and I both experience. I read Tender Points in one day and went back to reread it the next. All my annotations are basically nods: “Yes,” I wrote. “Me, too.” Tender Points was the first illness narrative I’d read in which the protagonist’s journey through Susan Sontag’s “kingdom of the sick” doesn’t end when the book does.
As I prepared Codependence (Cleveland State University Poetry Center, 2019) for publication, I went to reread Tender Points (again), but my copy was gone; I’d loaned it to someone or lost it in a move. Luckily, Nightboat Books reissued Tender Points late last year, which gave us two Amys a chance to talk about our books and compare notes on our overlapping but distinct conditions. Below, we touch on gendered inequities in healthcare and medical discourses, storytelling and form, and the recent expansion of our chronic pain canon.
Amy Long We’ve both written illness and trauma narratives in which we, the narrators, don’t get better. Readers tend to expect narratives like ours to adhere to a certain arc, “I got sick and went through some hard stuff, but now I’m better, and here is what I learned” or even “I’m grateful for my trauma or illness because it taught me XYZ.” Of course, we both write from personal experience, and this is what happened to us, but we’re also subverting genre expectations. We basically write memoir, in which the “I got better” structure is so prevalent. What do you think happens to the reader and the reading experience when a book refuses that structure?
Amy Berkowitz There’s something satisfying about disappointing a reader who’s looking for that ending. That sounds a bit mean. But that kind of cliché narrative is a cousin, I think, of “disability porn.” Our narratives, the narratives of people living with chronic pain, do not end with any getting better, and it would be fucked up to edit them so that they do. Let readers sit with the discomfort of witnessing us not get better. That said, the feedback I actually received about that aspect of the book was all from people with chronic illnesses who felt good about seeing their reality represented.
AL Your book was the first I read in which the narrator does not get better, so it was also the first time I felt like I saw myself represented in literature. Tender Points was a big influence on my writing for that reason (and others, obviously). We’ve both said we’ve noticed more books that deal with chronic pain getting published in the last few years, and I think Tender Points actually ushered in this little wave of chronic illness narratives that we’re seeing now.
AB Sure, I’ll take credit for that! But I don’t really think it was really Tender Points. I think Johanna Hedva’s Sick Woman Theory had a big influence. It feels great, though, to see all these books about chronic illness. I’m so happy this conversation is happening in a way that it didn’t seem to be happening in 2013, when I started writing.
AL What are some recent books that have stuck out to you?
AB Leah Lakshmi Piepzna-Samarasinha’s Care Work as well as Dirty River, which I read a while back but is still on my “currently reading” bookshelf next to my bed. Sonya Huber’s Pain Woman Takes Your Keys and Other Essays from a Nervous System, Esmé Weijun Wang’s The Collected Schizophrenias, Caren Beilin’s Blackfishing the IUD, Doing Harm by Maya Dusenbery. And this isn’t a book, but I took an Alt Text as Poetry workshop with Shannon Finnegan, and it’s changed the way I think about disability, accessibility, and poetry.
ALIt’s interesting that all the books you mentioned—even the workshop—are written or lead by women. You’ve written that it’s sort of impossible for women to be authorities on their illnesses and thus their bodies. In pain treatment, I’ve often felt as if I had to hand (or pretend I intended to hand) over my body to my doctor—like being sick means giving up my bodily autonomy. I can know what works best but most doctors just don’t seem to care what I want to do with my pain and my body.
In other areas, activists use the “My body, my choice” style of rhetoric, but I’ve never seen that argument come up in relation to women and pain or illness. Why do you think discourses around pain, choice, and consent differ so much from other women’s issues like sexual violence or reproductive rights?
ABThe obvious difference to me is the popular belief that doctors are good and always provide the best, safest option for their patients. They’re not right-wing politicians taking away our rights, and they’re not rapists; we like to believe that they don’t hurt us or take away our autonomy. But they do.
ALYour assault happened at the hands of a doctor. How does that impact your thinking around health decisions and around your depictions of other doctors?
ABThe experience taught me early on that doctors can’t be trusted and can do wrong despite our traditional belief that they always know best and are infallible. I think anyone writing critically about healthcare will ultimately come to this conclusion, but I came to it early and from a deep place.
I really appreciated your depiction of Paul in Codependence. He’s really the exception to the rule: he’s a doctor who’s thoughtful and kind, and he listens to you. He makes you a crochet octopus. And he discloses that he’s taken antidepressants, which feels so unlike a doctor. They’re supposed to be perfectly healthy, you know?
ALYeah, he’s a really good man. I’m glad that comes through for you because I haven’t heard much about him from other people. I wanted him to be defined by his empathy and care, not the prescriptions he wrote me. It was important to me that he didn’t look like a pill-mill doctor or a quack who just feeds me narcotics (not that there’s anything wrong with that! It’s what I said I wanted).
AB What is it like to have a doctor for a sibling?
ALIt’s… interesting. My doctor sister is at least sympathetic. She doesn’t agree with me that opioids are the best way to treat my pain, but she also doesn’t think I just want to get high. Her thinking has taught me a lot about how doctors think. They have their boxes, and if you don’t fit in the box for whatever issue you have, they don’t know what to do with you. To her credit, my sister is less prone to that kind of thinking, but I still see it in her responses to me.
AB What do you think is behind doctors’ refusal to understand chronic headaches or admit that the treatment might be painkillers? Is it fear of defeat? Are their egos so fragile that they can’t handle not having an answer?
AL Their egos definitely play a part. I’ve had doctors throw diagnoses at me so they could say they had an answer. Or you go into their office, and they think they’re the one who’s going to figure out this thing that no other doctor has figured out over at least a dozen years of serious trying. But I think a lot of it is fear. Doctors are targeted by the Drug Enforcement Administration for “overprescribing” opioids, largely, I think, because the government has to look like it’s doing something. All of this is despite the fact that studies increasingly say even though opioid prescribing has decreased, opioid deaths have increased.
Opioid prescribing is at a historic low right now, but overdoses are still going up in part because of an increase in heroin use and in part because heroin is so often cut with illicit fentanyl now. Without access to a known and standardized dosage, people don’t know how strong a bag of heroin is. All drug users are safer when they know what they’re getting. We are past the point where decriminalization would help all that much. Dealers would still sell fentanyl-laced heroin. But if we legalized drugs, I’m sure overdoses would level off. I could go on and on about statistics that show how infrequently pain patients overdose or get addicted—it’s between less than 1% and 10% or maybe 35%—but I won’t hijack the conversation!
There is something about headaches that make doctors especially unwilling to use opioids. I don’t know if it’s that they don’t take them as seriously or that they don’t think opioids work, but I’ve had at least two doctors say to me, “I wouldn’t write more than X milligrams for headaches, either.” They also seem to think of taking a narcotic painkiller for the rest of your life as “giving up,” and it bugs me because I feel like I should be able to make that decision, and I don’t want to spend the prime of my life looking for a cure that probably doesn’t exist.
AB As you say that, I’m thinking of the end of the first piece in your book (you are so good at endings, by the way), which ends “I picture the next thirty, forty, fifty years and wonder how I’ll bear them, what shape they’ll take, if I’ll still be able to write and what I’ll do if I can’t; I think about why I want to live. When I tell my mom I’m taking opioids again, I’m telling her how I will.”
AL Thank you! So many nice things in that question! I’m glad you connect doctors not wanting to “give up” to what I tell my mom, because my mom also sees a life on opioids as “giving up.” But I see them as something that keeps me from giving up. I think, if I didn’t have them, I would have, like, literally given up a long time ago.
AB We both told our stories out of order. I know why I did it, but I’m wondering why you did.
AL Why is yours out of order?
AB Because I was writing about trauma, writing the events out of order felt like the most authentic way to represent them. I didn’t recall the abuse until over a decade after it happened. Trauma isn’t linear. My memories of what happened are messy. I wanted the book to feel like that—nonlinear and fragmented.
AL I’m not totally sure why I wrote mine out of order! I think it comes a lot from a project I did in which I narrated my drug history in a medicine cabinet, which meant I had all these little pieces to put together and that I’d already thought about as fragments. But I had initially tried to write Codependence as a novel, and using a linear chronology felt really boring and kind of impossible. And the book has two main threads: the pain thread and the period about six years before I started taking opioids for pain during which I used drugs with an opioid-addicted now ex-boyfriend—so there were already two pieces to the narrative. I think I wrote a lot of it the way I did just so I could get a handle on it. There was so much I wanted to cover, and I had to find a way to make the size manageable.
AB I like that you take on the story in a lot of different ways: the glossary, the map of pharmacies in New York. One of my favorite parts of the book is the glossary, specifically the slide you do from clinical language to really personal, emotional language. Your use of the second person there is so powerful. It’s really natural, it mirrors the drug information, which is geared toward a “you” (i.e., the patient), and it makes everything feel so immediate. I’m thinking of the part where you wind up calling the woman with a stroller a cunt! [Laughter] And it starts with prescribing information for Topamax!
AL Thank you! The stroller story is one of my favorites. I really liked writing that glossary essay. I wanted it to feel actually, exactly the way you describe it and also for the reader to feel my exhaustion. It’s a huge essay! It’s, like,12,000 words. Like, if it’s exhausting to read, think how exhausting it must have been to experience, you know?
We are both unreliable narrators, too. Especially with the trauma and your repressed memory, did you worry about people believing you? In writing mine, I wanted readers to be able to form their own opinions about what I was doing, but I’m not sure that would necessarily benefit your project. How do you think your unreliability as a narrator affects the book’s reception? And does that even really matter since it’s about what happened?
AB I never really worried about it. I wasn’t writing the book to prove anything to anyone; I was following the thread of my curiosity, this question of, Could my chronic pain really be linked to my experience of childhood sexual abuse? It’s not like I was going to send a copy to the doctors who thought my vulvodynia was all in my head and wait by the phone for an apology.
The people who weren’t going to believe my story weren’t going to believe me no matter what.
I’m glad the book has found its audience, and it’s been personally validating to hear from so many readers with chronic pain who also connect their pain to past trauma. That said, I thought about including my experience with bipolar disorder in the book, and my choice to not include it was definitely informed in part by that concern about being too unreliable. I was concerned that it would cast too much doubt over my story and my memories. And maybe it would have. I don’t regret not including it, but in a way, it’s a shame because there’s a lot to say about the links between trauma and mental illness.
AL You do a lot of interesting things with form in your book—sometimes it feels like I’m reading an essay collection, and other times, you use poems or a more lyric form. How did you make those decisions, and how do they shape the narrative?
AB Early on in the book, I vow to speak my truth in “straight, masculine prose,” explaining that verse is too feminine, emotional, and unreliable. Much of my book is in prose, but toward the middle and especially at the end, I include some poems. The poems are some of the most viscerally emotional parts of the book: my assault is described in a poem; my doctor visits are described in poems. It felt more natural to describe them in fragments and impressions—to leave space around the words, let moments pass by, rather than to dress up these messy emotional moments as neat paragraphs. And my promise to not write in “feminine” poetry was tongue in cheek, of course, so I’m glad I wound up breaking it.
AL Do you think your book will be received differently now that there’s more awareness around pain and especially in the wake of #MeToo?
AB I’m not sure its reception will be all that different except that with #MeToo and the increase we’ve both perceived in books about chronic illness, it’s part of a larger conversation now. Which is great.