Bloom spoke with Jennifer Lunden about her debut book, American Breakdown: Our Ailing Nation, My Body’s Revolt, and the Nineteenth-Century Woman Who Brought Me Back to Life, out now from Harper Wave.
Leah De Forest: First, congratulations on the publication of this wonderfully thought-provoking book.
Jennifer Lunden: Thank you. I am just so happy to have it out in the world.
LDF: American Breakdown is many things: it’s memoir, medical mystery, history, and cultural critique. Could you tell us a bit about how the book came about?
JL: In about 1994 I found a biography of Alice James at a used book store. Alice was a diarist from the nineteenth century, sister of the writer Henry James and of the psychologist William James. I’d heard about her. I knew she had a fatiguing illness that left her bedridden. At that point I’d been sick for five years with what at that time we called chronic fatigue syndrome. It’s a devastating illness and isolating. I picked up the book (which was by Jean Strouse) thinking I’d like to read about somebody who’s had a similar experience. Her illness was called neurasthenia. I fell in love with Alice James. I felt like I’d found a soul sister in this struggle with this completely disabling illness. I got curious about whether her illness and mine might be the same. Around the time I was reading the book, scholars generally dismissed neurasthenia as a psychological illness—the idea was that maybe it had to do with women’s oppression, women not wanting to have the role of being housewives. But I felt from reading Alice’s biography, which included excerpts from her own journals and letters, that what she had experienced was as deep, real and disabling as my own illness. That was the seed. I began to do research about neurasthenia and chronic fatigue syndrome, to try to find out if anyone else had made this connection, and learned that only a handful of people writing scholarly papers had explored the connection between neurasthenia and chronic fatigue syndrome (which we now call myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS).
I started writing this book because I wanted people to understand the real-life, catastrophic effects of ME/CFS and how the illness takes over a life. Then … the book became something more.
The illness was so dismissed, especially when I first got sick in 1989. Things are better now, but still not good. There is overlap too now, with long COVID—fifty per cent of people with long COVID also qualify for a diagnosis of ME/CFS. A lot of them are being dismissed by doctors who don’t know how to treat them. I started writing this book because I wanted people to understand the real-life, catastrophic effects of ME/CFS and how the illness takes over a life. Then, as I kept researching and writing, the book became something more.
LDF: Can you describe the experience of having ME/CFS?
JL: A lot of people who have this illness will have experienced somebody saying, ‘Oh, I get tired too, I know what that’s like’. But they don’t. If you haven’t had this illness, try to think back to the worst flu you’ve ever had, or a severe case of COVID, and imagine your life being like that every single day, no knowing if it’ll ever get better. Being so fatigued that just getting up to go to the bathroom takes energy. You can’t do the things you love that bring you joy, because there’s no energy for it, and if you do those things anyway, you’re going to get something that feels like punishment. You’ll be in worse shape than before. One finding I cite in the book is that ME/CFS is often more disabling than AIDS, even in the final week of life. And that has certainly been my experience when it’s been at its worst. For many people there’s some fluctuation—I’ve had times when I’ve been able to do quite a lot, and a lot of times when I would get sicker and have to cancel a lot of things.
LDF: The subtitle of your book describes Alice James as “the woman who brought me back to life”. What was it about Alice and her story that struck a chord with you?
JL: Alice was so smart. And so witty. This is kind of funny to say because she was a nineteenth-century woman, but there’s something punk rock about Alice James. She once wrote, in a letter to a friend, “ill-health though not an exceptional or tragic fate inevitably brings a certain monotony into the lives of its victims which makes them rather sceptical of the much talked of and apparently much believed-in joy of mere existence.” She still makes me laugh, and that sentence is so true. When you have an illness like this one, and many others, it is very hard to have access to the much believed-in joy of mere existence. For her to be able to say that truth with this edge of irony, and wit—that is the thing that makes life endurable. Dark humor is one of the things that gets me through. When I was working as a therapist, that was one of the things I brought to my work, so that my clients and I could laugh at those hard times.
This is kind of funny to say because she was a nineteenth-century woman, but there’s something punk rock about Alice James.
LDF: In some ways this book is a long braided essay: your personal story is central, of course, and so is Alice James’s, and so are the other threads that you bring in (the history of medicine, for example, and your critique of gender bias in healthcare). Were you thinking about this kind of braiding as you wrote?
JL: It was more something that emerged. When I began writing the book, I knew some of the things I wanted to say, and I had an idea of the structure. But at that time I don’t think I’d read much braided writing. And then I discovered the lyric essay and fell in love with that form. It’s a hard form to define, but braided essays can be lyric essays; lyric essays often make use of white space and they can blend in research and memoir. They also leave room for a reader to make intuitive connections.
I came to see that I was taking the story of my illness and Alice’s illness, and I was putting them within the context of the larger story of what was happening in the nineteenth century, during her lifetime, and what was happening in my lifetime. I was looking at the cultural things that were contributing not only to our illnesses, but maybe all illness. And the only way to write something that complex was to do it in a fragmented, braided way. Also, in the mid-80s—when I first started studying writing in college—I found that I couldn’t write in linear ways. I felt like this was a flaw. But many years later I was introduced to this life-changing quote by the French writer Jean Cocteau: “Listen carefully to first criticisms made of your work. Note just what it is about your work that critics don’t like—then cultivate it. That’s the only part of your work that’s individual and worth keeping.” So discovering the lyric essay helped me find a way to write the way I naturally write, and cultivate it. And I don’t have to write a linear narrative. Thank God!
I was introduced to this life-changing quote by the French writer Jean Cocteau: “Listen carefully to first criticisms made of your work. Note just what it is about your work that critics don’t like—then cultivate it. That’s the only part of your work that’s individual and worth keeping.”
LDF: Can we talk a bit about wallpaper?
JL: Yes! Let’s talk about wallpaper. Wallpaper was this life-shifting moment for me when I was researching the book. You described the book as a sort of medical mystery: I was trying to figure things out about my illness and its context. I have a friend, Jennifer Tuttle, a PhD who specializes in nineteenth-century narratives of women’s illness. I was talking with her about my research one day, telling her there was a missing piece, and I didn’t know what it was, or if I could find it. The next time we met, she brought me this tiny little clipping from The Boston Globe that was about the Arts and Crafts trailblazer William Morris. His wallpapers had arsenic in them. I was flabbergasted. I unearthed nineteenth-century research estimating that 54 to 65 percent of all wallpapers sold in the US between 1979 and 1883 had arsenic in them. The arsenic was used to make these brilliant shades of green that nobody had seen before. This was a great way to use up a byproduct of the copper mining industry. People died, including two children of a Lancet journalist. Arsenic was in candy wrappers, playing cards, children’s craft papers, in the papers that lined bakery tables.
Even William Morris called the growing belief that arsenic was making people ill “witch fever.”
Manufacturers insisted these arsenical wallpapers were safe, and even William Morris called the growing belief that arsenic was making people ill “witch fever.” Manufacturers argued successfully that we didn’t need any legal protection from arsenic. That felt like what’s happening now with everyday household chemicals that we’re exposed to and that we think the Government is keeping us safe from.
LDF: And the Cartesian model?
JL: The Cartesian model—the idea put forward by the philosopher René Descartes that the mind and the body are separate entities—has been so important in medicine, helping us break things down to their smallest conceivable unit. That allowed us to do things like understand pneumonia, or create machines that will look at a part of the body—CT scans and so forth. But the failure of Cartesian medicine is that it divides the mind and the body as if they’re two separate things. It’s so inculcated in our culture that even after spending 20 years writing this book, I still have to consciously interrupt myself when I start thinking that something’s happening in my head and not my body. They’re attached by the neck, for a start!
Complex multi-system illnesses—like ME/CFS, Multiple Chemical Sensitivity, long COVID, Postural Tachycardia Syndrome (POTS), chronic Lyme and various autoimmune diseases—don’t respond well to the Cartesian method. These are not logical, linear illnesses. They require us to understand the body as a whole that is interconnected. And that all the systems in the body are in communication with each other. When I first was sick and my doctor ran blood tests, she found nothing. So she determined that there was nothing wrong with me. This sort of thing is happening now with long COVID. But I believe that we’re on the threshold of a new way to approach medicine which does take into account the whole person. And it’s going to be much more effective at identifying and treating multi-system illnesses like mine.
LDF: And healing?
“Considering how common illness is, how tremendous the spiritual change that it brings … it becomes strange indeed that illness has not taken its place with love and battle and jealousy among the prime themes of literature.” — Virginia Woolf
JL: I feel the most important thing to know about healing is that healing can happen even when cure doesn’t. Most people who are sick with a disabling illness are hoping for a cure, I certainly did, and part of what’s in the book are all the things I tried to do to recover my health. I knew I personally was not going to give up on recovering full health, but I also learned from one of my teachers that you can heal even if there’s no cure. Illness is an opportunity to look inward, and also to look outward, to see the world in a different way. There’s an epigraph at the beginning of the book from Virginia Woolf. It says: “Considering how common illness is, how tremendous the spiritual change that it brings … it becomes strange indeed that illness has not taken its place with love and battle and jealousy among the prime themes of literature.” I want to be clear: I don’t think illness comes to us because we have something to learn, but I do think that those of us who become ill or disabled, or both, can use that as an opportunity for healing. For me, illness was a way to find meaning in the darkness. And so was writing the book.
LDF: And hope?
JL: The whole time I was writing the book, I knew I couldn’t just write a cultural critique. I had to find something hopeful, or what’s the point? People would finish reading the book and then they’d feel powerless. That would have felt like a failing, because for me one purpose of writing this book was to shift people’s ways of thinking and behaving. And if people feel helpless and hopeless, they don’t change. Speaking just for myself—if I’m in that state, why would I bother? And that can become an excuse for taking no action at all.
When I was finishing the book we were at the beginning of COVID, Trump was the President, and I had just written a lot about what was wrong with America. I felt pretty hopeless. But Rebecca Solnit’s book Hope in the Dark taught me some really important things, which eventually undergirded an entire chapter. One of the key things that I learned—and this applies to the time we’re living through now, too, when things feel hopeless and scary for many reasons—is that positive social change isn’t linear. Even when it looks like things are completely hopeless and that things are never going to change, we cannot predict what’s going to happen. One of the things I did in American Breakdown is think about things that seemed, at the time, like they would never change. For example: the fight for gay marriage. People fought for this for decades. Efforts failed repeatedly: at the time, people probably felt like they’d failed. But they were laying the groundwork. There was a time, when I was a kid, when the “Wanted” ads had separate listings for jobs—those for men, and those for women. In the ‘70s this was just normal. Feminists have done so much to change things for us that we now take for granted: that happened because people worked for change. And it didn’t happen in a linear way. I really believe in the power to create social change when we invest our time and our energy, and, when we can, our money.
The other important thing Solnit says is this: The powers that be want us to be hopeless, to be placid. Hopelessness, and also toxic positivity, can both be used as excuses for inaction. Cynicism can be a way to avoid putting any effort into making the world a better place.
LDF: I’d like to turn to your process for a while, if that’s okay. One of the things you talk about in your book is learning to work with your body, rather than in resistance to its needs. Can you talk a bit about how that played into your process of writing American Breakdown?
JL: It took 20 years, in part because of my health. The first one or two years of the illness I would try to just do things anyway. I’d say: I’m tired, but if I just tell myself I’ll be fine, I’ll be fine. And then the outcome would be not good and not worth it. I’d crash into a deeper exhaustion. One of the things the illness has given me the opportunity to do—and I say this almost with an eyeroll: Thanks a lot, illness!—is to learn to listen to my body and to rest when I need to rest. Culturally, this is hard. There’s a section in my book about stress in America, and the way our relationship to stress is related to industrial capitalism. When I was writing this book, I was also working part-time, managing my illness and my healthcare appointments. Something I noticed around that time is that I was happy to live in my head. But part of my work in recovery was to learn how to pay attention to my body and connect with my body. That’s an ongoing project.
When I finished the first opening of the book I showed it to a friend for feedback, and she said: this is all written from your head, Lunden, you need to find more story, to be able to tell this from your body. So learning to connect with my body was important for my health, and also for my writing. Connecting with your body can be key, I think, to writing well. In part that’s because you’re connecting with your senses, which helps readers connect with the story, and their own bodies. You also need to connect to your own rhythm as a writer. For me, that means writing in short fragments, and interweaving them.
LDF: What surprised you about the writing of this book?
JL: I thought it would take two years. (Laughter.)
LDF: What surprised you about publishing this book?
JL: The audio book is narrated by Anna Caputo. I chose her out of five people: I loved her voice, and I felt she was really authentic. Eventually, I found Anna on social media and messaged her. She told me that the book had changed her life. She lived with a chronic illness and the book gave her some ideas for more that she could do to heal, and it also helped her feel less alone. Anna was one of the book’s first readers who wasn’t somebody I knew. So in a way she was like my first reader, and for her to tell me that my book changed her life … I’d forgotten I was also writing it for individual people, and in particular for people who suffer from illnesses like these. It was just so gratifying to make that connection with her.
LDF: What didn’t surprise you?
JL: That I’m just so relieved to have it out there. In about 2015, I was so done with this book—and by done I don’t mean “close to finished”. I didn’t want to do it anymore. I wanted to write essays, I wanted to be free. I am somebody who finishes what she starts, but I gave myself permission to consider stopping. It was tempting, but I also felt like what I was writing was important, and that the writing was good. I decided I was going to reach out for help. I would apply for grants and residencies. If somebody would support me, that would be the message I needed to hear that this book mattered. That year, I got grant money for the Money for Women/Barbara Deming Memorial Fund, and was invited to be a fellow at two artist residencies: the Virginia Center for Creative Arts and Yaddo. That changed everything for me. So I just kept working and working until it was finished. So what didn’t surprise me is that I’m just so relieved it’s over. I love that it’s out in the world, and I love having conversations like this one about the book, and I love that people can go to a bookstore and buy it and read all the stuff it took me 20 years to learn and write.
LDF: What’s next for you?
JL: I love to swim in the Presumpscot River here in Maine—there’s a special spot that I love to go to in the summer. For three months of every year, I’m able to swim across the river and back. Sometimes I’ll post on Facebook about the little moments that happen there. Two or three years ago, I found a hole that was full of musk turtle hatchlings. The hole was deep; it was too steep for them to get out. They stank like death, and I thought it was because they were dying, but it turns out that’s what musk turtles smell like (and that’s why they’re called musk turtles). I love animals; they bring out the child in me—animals and bakeries will do that! I started getting the turtles out, holding them cupped in my hands and wading into the river with them, letting them choose when to swim off into the river. I was in heaven. Each time I went, over the next couple of weeks, there were more turtles in the hole. I posted videos and pictures of the musk turtles, and people loved it. And that’s what got me thinking about how much I’d like to write a book about the river—about the people and the animals I connect with there. It’s a book about connection and awe. For me, it’s the antidote for all the stress, negativity and fear that we have about what’s happening in the world right now. It’s also a healing book, to help me heal from writing the first book. This book will have a little bit of research, but it will be mostly memoir. I’ve started making notes and organizing them, but I’m planning to officially start in January. And I can’t wait.
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 health and the 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, and some gloriously untamed gardens.