Interview by Katie Bannon
I first “met” Jennifer Lunden, who goes by the name Lunden, in a Facebook group we both belong to called “Binder Full of Memoirists.” This is an online community of female, trans, gender non-conforming and non-binary writers with the mission of elevating work by writers who have been historically marginalized.
The moment I heard about Lunden’s new book American Breakdown: Our Ailing Nation, My Body’s Revolt, and the Nineteenth-Century Woman Who Brought Me Back to Life (Harper Wave; May 2023), I knew I had to read it. As a chronically sick person, I’m hungry for stories that represent the too-often stigmatized voices in the chronic illness and disability communities. American Breakdown accomplishes this and then some.
In her genre-blending masterpiece, Lunden shares her journey to understand her myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), an illness that left her bedridden beginning at age 21. She also interweaves the story of Alice James, a nineteenth-century woman Lunden refers to as her “bed-comrade” due to their shared experience of crippling fatigue.
American Breakdown extends far beyond the personal, though, offering an in-depth look at capitalism, industrialization, and the American healthcare system – and how these affect everyone’s health. Drawing on two decades of meticulous research, this book is a must-read for both a medical and mainstream audience. Her storytelling, while ambitious, is imbued with a wonderfully intimate, lyrical voice. I delighted in Lunden’s language as much as in her ideas.
I had the privilege of talking with Lunden last month over Zoom, where we discussed her craft and research process for American Breakdown.
Katie Bannon: How would you describe how the book is structured, and what was the reasoning behind this choice?
Jennifer Lunden: The way that I write is the way that I think. I’m not good at thinking in a linear way and the structure of my book reflects that. At first, I wanted to write a factual third person account, because I thought an illness story might be boring. I mean, my illness was boring to me…The narrative was just, I’m tired, I’m tired, I’m tired. What if I never get better? But then I realized it was important to include memoir because personal stories help people care. It gives them an escape from the hardness of the content and allows them to connect to the emotion of the story. I wanted people to read my book with both their minds and their hearts.
I have a goal to get doctors and medical students reading this book. That’s why there are a lot of endnotes. Going back and forth between factual information and memoir allowed me to engage people in the medical field, as well as readers who’ve experienced these illnesses themselves. I also wanted to reach people without firsthand experience with these illnesses, so they could develop an appreciation for how disabling they are.
During the writing process, I thought a lot about chaos theory and fractals. I’ve begun to wonder if my book is fractal – there’s something to the idea that there are all these interconnected segments in the book (you described the structure as an onion bloom, which is fractal too!). I love reading research, and this is what kept my mind moving in that fractal, onion-bloom way. I kept following my nose – I wanted to get to the bottom of the research and continued asking the question “Why?,” bringing me deeper and deeper into the fractals. By the time I finished writing, I could feel in my body the interconnectedness of everything.
KB: Yes, I love that. I would definitely agree that the story deepens over time, but also that there’s a sense of return – a return to both your and Alice James’s stories. Alice’s story is integrated so seamlessly into the narrative, almost like there is a call and response relationship between your story and hers. Although Alice James lived during a completely different age, she comes alive on the page. How did you pull that off?
JL: I read Jean Strouse’s biography of Alice James in 1994, after I’d been sick for five years. For the first time, I felt like I had company in my illness. It was life-changing to have someone like Alice to admire – someone who was smart, witty, and made me laugh. It felt like having a friend who lived a hundred years before I did. Jean Strouse made Alice a living character. Alice’s own words from her letters and journals also made her into a full person. I think my shared experience with Alice allowed me to see her and render her with a kind of depth that someone without that experience probably wouldn’t be able to do. It’s really hard to get into the experience of someone whose foundational life experience you have not shared.
One of the interesting parts of exploring a character from a different time is seeing how much things haven’t changed. As a culture, we pride ourselves on our scientific advancements and how much more knowledgeable we are now, but I often wonder: How are people going to look at us in a hundred years?
KB: You’ve mentioned that this book took you 20 years to write. Can you talk about what kept you going during the ups and downs of the writing and research process? What sustained or grounded you during the moments you wanted to give up, when you thought you’d never finish the book?
JL: What kept me going creatively was knowing that I had a message to share. I wanted to destigmatize myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and multiple chemical sensitivity (MCS). That meant looking at the bigger picture of our society and finding ways to make these topics relevant to everybody. Everything that happens in our culture has an impact on our health, either positive or negative. As humans, we are interdependent with our surroundings – whether it’s the chemicals we’re exposed to, the beautiful nature surrounding us, or the political structures we’re entrenched in. The reality is that we are both independent and interdependent, and this affects our health. These were all messages I wanted to share in the book, and they propelled me forward.
There is another important piece of the story, though. I started researching the book in 2001 and writing it in 2007. In 2015, I said to myself, “Oh my god, I have been writing this book for so long, and I’m not even halfway done. I’m going to be writing this book for the rest of my life.” The project felt like an albatross around my neck. For the first time, I allowed myself to consider letting it go. I gave myself a few days to sit with that. Then I reread some of what I’d written and realized that it was good, and important, and that the message mattered so much to me.
But I knew that if I was going to move forward with this project, I needed support. That’s when I started to apply for grants and residencies. Those really helped boost my energy as a writer, giving me the validation that my book mattered and that other people wanted to invest in me. Residencies fill me up spiritually; there is so much cross-pollination that happens among artists. And I needed funding so that I could stop working and just focus on my book.
KB: I want to switch gears slightly and talk about the end of the book. I was fascinated by your inclusion of an Epilogue, which talks about the relapse you experienced shortly before your book deadline. In my classes, I often address the problems with the Western model of the narrative arc and having linear, happy endings. Just like our culture struggles with the chronic, non-linear trajectory of illness, we also struggle with non-linear books with messy endings. Why did you decide to end the book the way you did?
JL: In the process of writing this book, I read somewhere that readers (and publishers) want illness stories to have happy endings, ideally with the writer finding a cure. I didn’t know what was going to happen to my health as I was writing this book. To me, that’s one of the magical things about memoir – we’re not able to control the narrative in the way we might want to.
Unfortunately, that also applies to chronic illness! I relapsed while I was finishing the book: I had not been that sick since 1989, and it was completely devastating. I was bedridden and couch-ridden and it was not the ending I had planned. When time passed and I didn’t get better, I thought “What if I can’t finish my book?”
It took me months before I was able to get back to writing. By that point, it felt like there was no way I couldn’t write the Epilogue. Not including my relapse would have felt like withholding the truth. Relapse happens; we just don’t have complete control over our health. So this felt like it was important to say, even if it meant making the ending more complicated. Because I realized that was the point of the whole book – that everything is complex.
KB: How did your background as a social worker and poet influence this book?
JL: Many creative nonfiction writers were poets first, and I think that’s a really good way to start. (Not that writing poetry isn’t an end in itself!) With poetry, you learn about imagery and rhythm. Writing poetry is a bodily experience for me; I slip into a different, lovely realm, full of rhythm and sound. That has translated into my creative nonfiction.
I did not realize how social-worky my book was until I taught a social work course. The foundation of social work is not to look at the individual as the problem, but rather the society they live in. Social workers are generalists. We don’t focus on just one thing, but instead examine how all things together affect individuals and the culture. I was a clinical social worker. So I’ve had the experience of being inside the medical system both as a patient and as a practitioner who was a therapist. My social work background is so ingrained that in me that I ended up writing the book through that lens without even trying.
KB: What was the most shocking thing you learned in your research?
JL: There were so many jaw-dropping things. The first one happened while I was investigating what was going on in the nineteenth century that could have contributed to illness, particularly neurasthenia (the illness Alice James suffered from). A friend handed me a clipping about arsenic in the wallpaper. When I started researching that, I was on fire. Who would have thought there’d be arsenic in this wallpaper, and it was to make this gorgeous dye that would change nineteenth-century culture? I kept a journal every day with everything I was learning.
That finding correlates with the bigger picture of today, with all the things we’re told are safe that aren’t really. I used to think the government, and specifically the EPA and FDA, were there to protect us. I thought they over-protected us. The EPA started out with a very positive vision, but when Anne Gorsuch took over under Reagan, she changed what was considered an “acceptable” risk of cancer from one in a million to one in ten thousand. All of the sudden, the things that were considered carcinogenic before were now considered safe.
KB: Can you shed a little light on your writing and research process? What kinds of resources did you rely on for your research, and how did those change over time?
JL: I’m so grateful to research librarians. After I read the biography of Alice James and was close to winding down my master’s in social work, I knew I wanted to write a book about Alice James and my illness. I went to the research librarian at the University of New England and told her I wanted to explore the connections between neurasthenia and chronic fatigue syndrome. At the time, there wasn’t a lot written about that. But she helped me get my first pile of research papers, and the endnotes in those led me to more. Reading the research was something I could do from my bed – it was fun and gave me a sense of purpose. After doing research for six years, I felt confident that I was onto something. That’s when I started writing.
Ultimately, I read over 100 books and four file drawers worth of papers and articles. Google was my research assistant, and sometimes I asked my Facebook friends to help me brainstorm or find words or help connect me with experts.
KB: What advice would you give to sick or disabled writers who want to write a book?
JF: Pace yourself. Honor your body and its needs. It’s okay that it takes a long time.
That’s difficult to say because we’re all impatient, including me. But when you have a chronic illness and/or disability and you’re pressuring yourself to do something faster, that’s not helpful to your body.
At first, it was hard for me to see other people with ME/CFS writing about Alice James and neurasthenia, because I had wanted to be the first. But instead, I get to be part of a groundswell of women writing about the problems in our healthcare system. There are starting to be so many books and articles about these issues in medicine – the bias against women, BIPOC, disabled, low-income, and LGBTQIA+ people – and I can’t help but feel optimistic that we’re in the midst of a paradigm shift. There’s a lot to be said for being part of that groundswell.
This is maybe a different model than when the writing world was male-dominated. Women have a unique way of supporting each other: as the saying goes, a rising tide lifts all boats. The idea of women, trans, and nonbinary people supporting each other to get their voices out in the world is so powerful.
KB: What writing are you working on now?
JL: As I mention in American Breakdown, I love to swim in the Presumpscot River in Maine. Two years ago, I was among a group of people who found a hole full of musk turtle hatchlings. The hole was so steep the hatchlings couldn’t get out. We ended up rescuing them. I posted about that experience on Facebook, and people loved it.
I want my next book to be short, as well as more memoir-based, without a lot of research. Writing American Breakdown was impassioning, but it was also really hard. I’m writing this next book as a form of healing, and the river is where I go for healing. So I’m in this really fun stage where I get to start reading books and going to the river – not just for my mental and physical health, but also because it’s my job!
The recipient of the 2019 Maine Arts Fellowship for Literary Arts and the 2016 Bread Loaf–Rona Jaffe Foundation Scholarship in Nonfiction, Jennifer Lunden writes at the intersection of body and environment. Her essays have been published in Creative Nonfiction, Orion, River Teeth, DIAGRAM, Longreads, and other journals; selected for several anthologies; and praised as notable in Best American Essays. A former therapist, she was named Maine’s Social Worker of the Year in 2012. She and her husband, the artist Frank Turek, live in a little house in Portland, Maine, where they keep several chickens, two cats, a Great Dane puppy named Maisie, and some gloriously untamed gardens.