I was exhausted from a year and a half of working as a nurse in the pandemic when ACM asked me last August to interview Emily Maloney about her forthcoming book Cost of Living. I tried to say no. But simply reading the advance press for Maloney’s essay collection brought me to understand that my exhaustion was not from the pandemic. Rather, it resulted from nearly thirty years of the everyday moral distress experienced by any worker in our capitalist healthcare system. So I said yes to this interview because I hoped that Maloney could illuminate the simultaneously overwhelming and incremental ways that the system dehumanizes us. And she does that in her new book. As Sarah Manguso said in her New York Times review: “Each essay documents a different kind of structural failure, caused or complicated by capital and inevitably ending in harm to patients.” Cost of Living’s February release has catapulted Maloney into the spotlight, with praise from Publisher’s Weekly, USA Today, the Chicago Tribune, and NPR, among others.
In the book Maloney describes her struggle as a teen and a young woman with what she thought was a psychiatric illness that had failed to respond to twenty-six medications. In her mid-twenties she finally learned that her struggle to connect to the world—which caused her to wonder at times if “I am worthy enough to buy bread”—was actually caused by a vitamin deficiency, hypothyroidism, and a neurologically-based developmental disorder. Despite the relief and treatments that resulted from these new diagnoses, Maloney was mired in a medical debt in the tens of thousands resulting from a suicide attempt at age nineteen. She found herself working in an emergency room in a futile attempt to pay it off. The book’s later essays stretch into her thirties after she turned to higher-paying work as a pharmaceutical publications manager. In the final essay, “Something for the Pain,” she describes attending PAINWeek 2019—a journalist among medical practitioners who are seeking to discern “the fine line between a pain patient and a drug addict,” observing that “sometimes patients go back and forth across it.”
The essays in Cost of Living trace a multitude of the fine lines that divide Americans into artificial categories such as provider/patient, healthy/ill, insured/uninsured, indigent/able-to-pay. The book summons us to witness up close as she, her ER coworkers, and patients drift across these lines, often traveling in opposite directions.
Maloney’s work has appeared in the Washington Post, Glamour, Virginia Quarterly Review, Atlantic, and the American Journal of Nursing. The book’s title and opening essay, “Cost of Living,” was selected for Best American Essays 2017, edited by Leslie Jamison. Maloney is also a MacDowell Fellow and a 2019 Illinois Arts Council fellow. She lives in Evanston, Illinois, with writer Ori Fienberg and their dog, Millie.
Since our interview in November, Maloney has sold her second book, Burn This House Down, to Henry Holt & Co. This book will bean exploration of psychopathy in Maloney’s own family tree that also examines failures in the way society treats psychopaths.
I interviewed Emily Maloney November 26, 2021, over Zoom. The interview was edited for clarity and supplemented by email conversations.
–Barbara West
Barbara West: Do you wonder what your life might have been like if you were diagnosed with NLD [nonverbal learning disability] sooner? If your thyroid and vitamin deficiencies had been discovered earlier, rather than you spending years being misdiagnosed and mismedicated?
I think we’re all doing what we can with the resources that we have. So I refrain from assigning blame. Would it have been useful for me, when I was younger, to know how I was wired differently? At least middle school would have been marginally more tolerable. We want to have some way of explaining ourselves to ourselves, and some way of explaining ourselves to the world. But I hesitate to say that my story would have been any less complicated than the story I ultimately told.
I’ve lost several friends to suicide; and my life, both personally and professionally, has been touched by mental health issues in many ways. I want to talk about my fear of reading your book. And also my fear of continuing to read it at certain moments.
Sorry!
No, no, it’s all good! It’s good for me, or I wouldn’t be doing it! One of the things I worried about was that it was going to be a victim story. Instead, you have a lot of empathy for the people who were trying to help you. Do you want to say anything about that?
There are a lot of memoirs out there in which things happen to the narrator and continue to happen to the narrator. Although I’ve read a lot of those books, I can’t always endorse them. There are three people in every book: the narrator, the author, and the character. The character is the id you, the idiot you, walking around. The author is outside of the world making choices. The narrator is there to parent the character along. A lot of modern memoir fails to recognize the difference between the narrator and the character. And that failure of recognition results in a lot of these, like you say, victim/blaming books, where things just sort of happen to the character rather than them being an agent in their own change and evolution. I think it’s really important to have reached that point at which you can tell the story.
That’s what I’m struggling with in my writing now, and why my editor is having me read Phillip Lopate.
He was actually sort of responsible for an enormous breakthrough that I had. As a grad student, I was awarded a fellowship to attend the New York State Summer Writers Institute. Phil, as we called him, was my professor and gave a series of lectures about memoir writing and how you’re engaged in a relationship with the reader that starts on page one. I want them to understand that I am in fact OK. That I am an adult who learned a lot from these experiences, but I am not the person who is encapsulated on these pages. That way we don’t have the kind of anxiety that makes some readers stop reading.
Let’s talk about another source of anxiety for most of us—our healthcare system. As a wound care nurse, I often work with folks like the E.R. “frequent fliers” you describe. Even if their wounds might heal, most of my patients don’t really get better, physically or mentally.
It’s weird that we live in a world where people can’t get the help they need and resort to presenting at triage, saying, I have this terrible pain, or whatever it is. It’s among the most catastrophic failures of American medicine. ER docs can’t deal with whatever psychological issues are present. We saw a ton of psychiatric patients and medical patients with complex etiologies, dozens of physical comorbidities, and a lot of psychiatric comorbidities as well. There was a study Atul Gawande wrote about this in the New Yorker a few years ago. A hospital in Camden, New Jersey, piloted a program where they just provided additional concierge round-the-clock care to patients who were identified as frequent fliers. Guess what, it was cheaper. It was cheaper than them coming in and flooding the ER. They had better quality care. They got better.
I can understand if policy makers don’t care about people’s well-being, but when it’s actually cheaper to just go ahead and take care of them, that’s what kills me.
If it were about saving money then people would have a different approach. But it’s not about saving money. It’s about making money. Making money is the goal.
It’s painfully ironic for me that, after twenty-nine years of working as a nurse, I need you to tell me this. Speaking of ironies, I’m curious about other contradictory impulses you describe in Cost of Living. You were knowingly writing for an audience, while you were simultaneously working in the ER and keeping your own mental health struggles secret. Can you explain this contradiction?
I don’t know, I always wrote. There’s a woman in my head, she’s not me. She’s exceptionally rude, and she just tells me what to write down. For a long time I thought I had severe mental illness because of it, but it turns out I’m just a writer (laughs). She often wakes me up in the middle of the night to work on what I’m working on now. I started writing a few of these ER stories and I went back to school to finish my undergraduate degree. I took a graduate class in nonfiction at the University of Iowa from Susan Lohafer who seemed to be behind 80% of the books that came out of their nonfiction program. She explained myself to myself in a way that I had never quite understood prior to that point.
I joke that in an ideal world, I can just drop books into a black hole and they will somehow be disseminated to readers and I don’t have to hear about it. The idea is, as long as no one talks to me about my own work, I’m fine.
Writing was really hard for me and that’s a function of my NLD. Most of us NLDers—and that’s a terrible acronym…we’re working on it—are not writers because it’s too hard to organize our thoughts, because the gap between our verbal IQ and performance IQ is vast. And so we talk fast and think slow. Which gets you into a lot of trouble. On some level, I’m using the narrator to organize and make sense of the world around me. Even if I don’t think I’m writing for an audience, I’m still writing for an audience.
Are you hoping your story might be helpful to those with similar struggles?
I just want to share it with people because I don’t know what else to do with it. It just piles up otherwise.
Yes. How did Cost of Living come to be a book?
This collection of essays became my MFA thesis at the University of Pittsburgh. My adviser at the time, who was great—but a little squeamish maybe?—he hated it. So I found a different person who was willing to be my advisor.
It started with the essay that was in VQR in 2016 and then reprinted in Best American Essays. I was originally supposed to write a reported piece for VQR about West Virginian EMTs and their oral tradition—a lot of these guys are not literate, but they’re amazing first responders, saving lives—but they can’t pass the written component of the national registry exam. (I was working for a Danish pharmaceutical company during the day, managing the flow of publications for clinical trials.)
But then I had a problem with my source. So I emailed my editor at VQR and said, I’m really sorry, I’m totally embarrassed and horrified that I can’t do this EMT story. I’m sending you a piece from my MFA thesis as a consolation prize, do you think anything can be done out of this? He wrote back, “I think we can do something.” He rearranged a lot of it. (And this is true of people with NLD—we write things, but not in the correct order.)
I also got my agent out of my MFA program. Pitt sends third-year nonfiction students to New York to pitch to editors and agents. I had actually gone to the meeting for my friend, to support her, but then Matt McGowan turned out to be the right agent for me. He’s great.
At some point, during all of this, I started working as a medical publications manager at a Japanese pharmaceutical company, because my debt situation had spiraled out of control. I needed to pay off all sorts of things before I could work on any real projects. During that time I got into the McDowell Colony, put together a proposal, and sent it to my agent.
I timed McDowell for Christmas, New Year’s, and the week after, so I could use all of my holiday pay, everything. I was a different person having gone there; they feed you amazing things, everyone should apply, it was basically magic and life-changing.
That spring the proposal and sample chapters went out on submission, including the 2014 Atlantic essay I wrote during the program with Phil Lopate. Luckily enough, people were interested, it went to auction, and someone bought it.
All of these people in the book are HIPAA de-identified, all the names are changed with the exception of those in the two essays that appeared in VQR. Each of those was fact-checked thoroughly. I had to send my medical records to the fact-checker as well as my debt information. They interviewed people.
It’s amazing to think of someone sorting through all that, so long after the fact. Back to the fear of discovery that appears so often in Cost of Living. When I’m writing revealing memoir pieces, it helps to say to myself: Probably no one will ever read this. Is that what you do?
Oh, I just assume everyone will read it. The fear of discovery I describe in the book was just a function of hoping I could keep my job. NLDers sometimes come off as flat affect or inappropriate affect at times, or we’re too honest.
You write a lot about your neurotypical mask, such as this passage from “Soft Restraints:”
“I smile and talk to people, remember coworkers’ birthdays, keep fidget toys or candy at my desk to show that I am inviting, friendly, playful. I am careful to regulate what I say, how I say it, who I am, who I appear to be. I pass, more or less. I brush my hair and teeth, wear clothes that signify that I am performing office life. But this is not an easy choice. It is, however, a choice, at least for me, at least for now. It is a choice I make every day.”
That is a necessary ingredient for survival.
But my guess is that the NLD helped you cope with all those times you did lose your job, as if the social impact of getting fired doesn’t register with you?
That’s true. I could get fired from a job and then like five minutes later get another one. It helps knowing how to sell yourself in specific situations where dialogue is more scripted. I’m pretty good for 15 minutes at a time, but things fall apart after that.
On Twitter you mentioned your audiobook. Is there anything you’d like to say about it here?
Sure, I had a lot of fun. I actually had to audition for it! I have some experience doing auditory essay, and my book is wired for sound, the cadence of each sentence. This is very true of NLDers; we’re all very much wired for sound. Every bit of my book is meant to be spoken aloud. It just so happened that I had to write it down in order to get published.
Were you reading it aloud to yourself?
When I’m drafting, I have thoughts about what I might be doing, and then I go for a walk, or I load the dishwasher, or I go ride a horse, come back, and, by the time I write it down, I already have it in my head, already constructed the way that I think it needs to be constructed. There’s a particular cadence for this book. There’ll be a particular cadence for the books that follow. I want to construct each sentence to be reflective of the kind of energy I want the reader to bring to reading it.
Can you say more about that, the reader’s energy?
I aim to devastate, to ruin? That’s the goal, I think. The sentences build to form a tiny arsenal and then I release them to the reader. The narrator, the woman in my head, who wakes me up in the middle of the night—I write down what she says, so I’m already hearing what needs to be written as I write it.
You’re not using dictation software, you’re actually writing it in your head, memorizing it, and then typing it up?
Yes. The book I’m working on right now, I can read it in my head. So I just flip the pages and words appear on the pages. And then I match the words in my head to whatever I need to write down.
Do you have a photographic memory in general, or just for these things in your head?
No, I wouldn’t say I have a photographic memory. There are things though that, when I know I want to remember something, I can remember it pretty accurately.
Wow. Have you had backlash from publishing these?
From whom?
I don’t know. In the environment where I work, I’m afraid of being “found out” every single day, just for doing my job.
I think that as long as you treat your characters with compassion, and you’re thoughtful and empathic and you do what you can to support their narrative and their truths. And much of the book is about my own experience, so it’s hard to say I’m invalidating my own lived experience. When I was in my MFA at Pitt, I almost also completed an MA in bioethics at the same time, learning about the bioethical implications of writing about certain patient populations.
You’re compassionate in how you describe patients, but you’re indicting the system so strongly. It doesn’t occur to me until this moment that “the system” has no identity with which to be offended and fight back.
The people I worked with, both in the pharmaceutical industry and elsewhere, were exceptionally thoughtful, compassionate, smart, really hardworking, wanted to do the best for their patients. It’s not an indictment of individuals, it’s an indictment of a system.
And this system is so huge that our insults to it are not even relevant to it.
That’s also true. Ultimately it doesn’t really matter what we feel because the machine is still there and it’s still making a lot of money every year.
What can we do, Emily? You’re tagging Medicare for All on your Twitter site. What should we be doing about this?
I really think that Medicare for All is the only viable solution, a single-payer healthcare system. I do think that insurance companies are genuinely evil, because it shouldn’t be up to the insurance company what providers are allowed to do for their patients. A big part of our problem is that somehow insurance companies are legal. They have extraordinary large lobbying power. Without something like Medicare for All, we’re never going fix any of the structural inequities.
Who is Medicare for All? I just hear about it through my union. Do I give them money, what do I do?
You can vote people into office who support Medicare for All. That’s really all we can do. There’s significant evidence that there would be less inefficiency and less waste if everyone had free healthcare. And if we could work from a wellness model, rather than a disease model.
Cost of Living is also an indictment of medication-focused therapy for mental illness. Do you want to say anything about alternative mental health approaches, like equine therapy or drama therapy?
The “biological revolution” in psychiatry basically came out of the University of Iowa in the mid-seventies. Dr. Nancy Andreeson was an English professor, but after she gave birth, she decided to go to medical school. A brilliant researcher, she wrote The Broken Brain. She did scanning and mapping of the schizophrenic brain. This was in the wake of LBJ and the legislation that turned everyone out of their institutional home and onto the street.
The “biological revolution” is based on the idea that we have a one-to-one relationship between psychiatric ailments and medications. Like insulin for a diabetic, we just have to be taking the right amount of Klonopin, or whatever it is. At the same time, reimbursement for traditional psychiatry appointments has declined. Medication management appointments take only 15 or 20 minutes, so they are much more lucrative than talk therapy. And psychiatrists are not paid well relative to other medical specialties, yet they still carry the same amount of student loan debt.
There’s a shortage of mental health providers nationwide and we live in a world where we have a disease model not a wellness model. So, a patient presents with a problem? Well, maybe we can fix it with a pill.
So here I am asking you about drama therapy or horse therapy and you’re reminding me that traditional talk therapy is hardly even covered now.
Yeah. It’s hard to measure whether or not these alternative therapies work. And it’s hard to get it approved by insurance companies because it’s not a good model for them.
When I was a child, I had the incredible benefit of horseback-riding lessons at a local, rundown facility that my mother drove me to. My parents had to pay extra for the facility’s insurance coverage because I was younger than the traditional age that people started lessons. I rode throughout childhood, adolescence, and now, as an adult. I have a number of friends who became internationally competitive grand prix dressage riders, and I became a writer instead. It’s very hard to support an equestrian career without significant financial support. There’s a horse book in my future.
The owner of the barn where I rode when I was young would buy undesirable horses from auction, bidding against the meat dealer, and then I would ride the bucks out of them. So I had experience training horses from a young age. It was an opportunity for me to regulate my body and my brain.
My brain, the woman in my head, the internal monologue, totally shuts off when I’m on a horse. I have no thoughts on a horse. It’s like totally empty, the best thing—I’ve been chasing that feeling my entire life.
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Barbara West’s second book, a work-in-progress memoir, What the Others Are Here For (And What If I’m One of Them?), explores tension between Christian/Buddhist directives to “help others” and her twelve-step program’s directive to “focus on yourself and stop bothering everyone else.” Her work is forthcoming in Bellevue Literary Review and has appeared in the American Journal of Nursing, Shambhala Times, Flying South, Full of Crow, among others. A descendant of Pennsylvania Dutch activists, she lives in Corvallis, Oregon. This is her third piece in ACM.
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