Transcript of A Conversation Meghan O’Rourke & Ingrid Rojas Contreras
- Good evening. I'm Michael Elliot. I'm the president of Amherst College and I wanna thank you for joining us here in Johnson Chapel or if you're on livestream joining us via livestream. Tonight, I am delighted to welcome you to Lit Fest 2023, the eighth iteration of Amherst College's annual literary festival, celebrating the literary life of the college and beyond. As some of you might know, I became president of Amherst College in August, and this is my first Lit Fest as president and as an English major of this great college. It is such a pleasure and an honor to return to this building where I became enraptured and entranced by the study of language, by the power of narrative, and by the ability of literature to both delight and perplex me and something that has only grown for me, a love that has only grown over the last 30 years, even though I feel as though I understand it less and less. I am delighted to be launching this year's Lit Fest. We once again have an incredible array of readings, talks, conversations, workshops with distinguished and inspiring writers. I'm truly excited to hear from tonight's featured guests, and I hope you'll join us from multiple events over the coming days. Tonight's event is the part of the National Book Awards on Campus Program, and is hosted in partnership with the National Book Foundation. We thank Jennifer Acker, Lit Fest Director and a 2000 graduate of the college for bringing this partnership about. Jen is the founder and editor-in-Chief of the Common and Director of the Magazine's Literary Publishing Internship, which gives Amherst students outstanding opportunities to participate in contemporary literary conversations while also preparing them for writing and editing careers. She's also the author of an unclaimed novel, "The Limits of the World," and a bestselling memoir, "Fatigue," as well as short stories, essays, translations, and reviews. I'll turn things over to Jen and to Ruth Dickey, the executive Director of the National Book Foundation, to introduce tonight's featured guests in just a moment. But first, I wanna acknowledge that bringing an event like Lit Fest to Life is a truly collaborative effort. I'm grateful to all of the community members across campus who've helped to make it happen, including our on-campus partners, the Center for Humanistic Inquiry, the Chi here at Amherst College, the Common magazine, the Emily Dickinson Museum. Lit Fest is also made possible by the generous support of the Croxton Lecture Fund, established by William M. Croxton class of 1936 in memory of his parents, Ruth Allen, Hugh W. Croxton. And now please join me in welcoming Jen Acker.
- Thanks Michael, and happy first Lit Fest. Welcome everyone. And a very warm welcome to Ruth Dickey from the National Book Foundation, who will say a couple words about the partnership and the foundation in just a moment. So every year when Lit Fest comes around and as I get nervous that no one's gonna show up in the dead of winter, I ask myself, why should they show up? Like, why should you all be here when it's hailing and whatever else it's doing outside? And you may be asking why we choose to hold this event in February. And my answer has always been that it lights up the winter. As Amherst own motto, as some of you may know, is Terras Irradient or Let them enlighten the Lands. I think the Lit Fest theme should Libri vitas Irradient, or Let Books enlighten our lives. And I'm talking less about wisdom here than about warmth, because good books are quite simply our good friends. Literary voices have always kept me company. I grew up in rural Maine with not so many companions as an only child, and books were as crucial to my sustenance as the vegetables that my father farmed. For all the other virtues that books possess, the ability to expand knowledge, to cultivate empathy, perhaps the most important is the way they combat loneliness and make us less afraid of the world. And I'm setting aside Stephen King and other horror writers for the moment. So let's just bracket that. We do live in a world of more or less constant threats. And I find that what truly calms me the most is reading a novel or a nonfiction account with characters that stand up on the page because they've been brought to life by purposeful and precise sentences. And I'm not talking about escapism, which is just sort of a mindless emptying. I mean that full body engagement that comes with excellent prose and poetry. The voices of good literature speak to us and the quality matters. I am not drawn in if the writing is messy or confusing or clunky, I put those books down and I remain alone. So a festival like this one, which celebrates the power of truly dynamic writing spreads the joy of literary companionship. No matter how big our families are or how many friends we have, we still need books to keep us company. And if we can have a literary experience in which we share in real time with members of our community, then that's the best of all. Even for those of us who are introverts and have known in some moments to choose books over people, some of you can probably relate. At his inauguration this fall, President Michael Elliot asked, what does it mean to love a place? And even in February, I hope this weekend helps to answer some of that question. And now, welcome to Ruth.
- Hello everyone. My name's Ruth Dickey. I have the tremendous pleasure of serving as the executive director of the National Book Foundation. Thank you so much to President Elliot and to Jen for that lovely warm welcome, and for eight years of partnership between Amherst College and Lit Fest and Team Book. I promise to keep this very brief so we can get to the very best part. But I did want to offer a heartfelt thank you to the many people who made this evening and this weekend possible, especially the president's office, Jen Acker and the Common, Amherst College's conferences and special events team, especially Christina Ladue and Mary Jane Plasik. This is my first time at Lit Fest also, and what a treat it is to see the way the entire campus and greater Amherst community has gathered to celebrate great books and the people who behind them February weather be damned. Thank you to all of you here in this room and everyone tuning in online for joining us tonight. At the National Book Foundation, we do our darnedest to reach readers all over the country in all 50 states through free topical programming in person and online, and through book distributions for young people and adults alike. This month I've launched a special newsletter, Read with NBF to share behind the scenes interviews with our 2022 National Book Award winners. I'd love it if you'd subscribe and tell me what you think. For tonight's program, it's a privilege to get to celebrate two of our 2022 National Book Award honorees, Ingrid Rojas Contreras and Meghan O'Rourke. These authors expanded the way that I think about memoir and investigative non-fiction with their beautiful books, "The Man Who Could Move Clouds" and "The Invisible Kingdom: Re-Imagining Chronic Illness." These books challenge inequities of bodies, of class and of healthcare, and show us new ways of understanding our past and our present. How lucky we are to sit with their words on the page and in conversation tonight with Amherst lecture and author of "In the Antarctic Circle," Dennis James Sweeney. Questions tonight will be handled by note cards in the pew back in front of you. Please write your questions legibly, we hope. And Amherst staff will come around to collect them. Dennis will try to squeeze in as many as possible. These beautiful books are available for sale with thanks to Amherst books, although we've heard there's a hiccup and sadly that Meghan's book is not in here with us this evening. So we encourage you warmly to follow up and get it from Amherst Bookstore or get it online at bookshop.org from your favorite independent bookstore anywhere in the country. After the program, the authors will be signing books. And now I'm delighted to introduce you to our authors. Ingrid Rojas Contreras was born and raised in Bogota, Colombia. Her first novel, "Fruit of the Drunken Tree" was the Silver medal winner in first fiction from the California Book Awards and a New York Times editor's Choice. "The Man Who Could Move Clouds: A memoir," was a National book award finalist. Her essays and short stories have appeared in New York Times Magazine, the Believer and ZYZZYVA, among others. She lives in California. Meghan O'Rourke is the author of the New York Times bestseller, "The Invisible Kingdom: Reimagining Chronic Illness" and "The Long Goodbye," as well as the Poetry Collection's, "Sun in Days," "Once and a Half Life." Her writing has appeared in the Atlantic Monthly, the New Yorker and the New York Times, and others. The recipient of a Guggenheim Fellowship, a Harvard Radcliffe Institute Fellowship, and a Whiting Creative Non-fiction Grant, she resides in New Haven where she teaches at Yale University and is the editor of the Yale Review. And Dennis James Sweeney is the author of "In the Antarctic Circle," winner of the 2020 Autumn House Rising Writer Prize, as well as four chapbooks of poetry and prose, including "Ghost Home, A Beginner's Guide to Being Haunted." His writing has appeared in Five Points, Ninth Letter and the New York Times and the Southern Review among other publications. A small press editor of entropy and former Fulbright Fellow in Malta, he has an MFA from Oregon State University and a PhD from the University of Denver. Originally from Cincinnati, he lives in Amherst where he teaches at Amherst College. Thank you all so much for being here this evening, and please join me in welcoming these authors to the stage. And enjoy the program.
- Hello, it's so wonderful to see all of you. And thank you for these wonderful introductions and it's so great to be with you, both Ingrid and Meghan tonight. Would you please bring us in to our conversation with reading some of your work.
- Oh yeah. And I'm happy to begin. Hello everyone. I'm very happy to be here with you and looking forward to the evening. I'm just going to read from the beginning of the memoir. "They say the accident that left me with temporary amnesia is my inheritance. No house or piece of land or chest of letters, just a few weeks of oblivion. Mami had temporary amnesia as well, except: where she was eight years old, I was twenty-three. Where she fell down an empty well, I crashed my bicycle into an opening car door. Where she nearly bled to death in Ocaña, Colombia, in darkness, thirty feet below the earth, I got to my feet seemingly unharmed and wandered around Chicago on a sunny winter afternoon. Where she didn't know who she was for eight months, I couldn't remember who I was for eight weeks. They say the amnesias were a door to gifts we were supposed to have, which Mami's father, Nono, neglected to pass. Nono was a curandero. His gifts were instructions for talking to the dead, telling the future, healing the ill, and moving the clouds. We were a brown people, mestizo. European men had arrived on the continent and violated Indigenous women, and that was our origin: neither Native or Spanish, but a wound. We called the gifts secrets. In the mountains of Santander, the fathers had passed the secrets to the sons, who passed the secrets to the sons, who passed the secrets to the sons. But none of his sons, Nono said, had the testículos required to be a real curandero. Only Mami, strong-willed, unafraid, more of a man than most men in his eyes, whom he liked to call mi animal de monte, could have housed the gifts. But Mami was a woman, and such things were forbidden. If a woman came to possess the secrets, it was said that misfortune would soon follow. Yet, as eight-year-old Mami recovered from her injuries after falling down the well, and as her memories returned, it so happened that, from wherever her mind had gone, she brought back the ability to see ghosts and hear disembodied voices. The family says Mami was destined for the secrets, and since Nono couldn't teach them to her, the secrets had come directly to her. Four decades later, when I suffered my accident and lost my memory, the family was thrilled. Tías poured drinks, told one another with an air of festivity: There it goes again! The snake biting its own tail! And then they waited to see how, exactly, the secrets would manifest in me. This is a story that happens in Spanish, where Mami and the tías call each other vos, the archaic "thou," but they use tú with me, the informal, tender "you." Theirs is the way of speaking in Ocaña, where our family is from, and where language can sound like a colonial fossil. In Spanish, our stories are slow then fast, and we cackle, constantly. Mami and I are spooked by the way our lives echo each other's, so we don't often discuss our amnesias. But, increasingly, this is an itch I must scratch. I scrape and scald at its touch, only to want to probe into it again. The tías ask me to tell them what it was like to live without a memory. I focus on trying to communicate how surreal it was, how cinematic. The tías roll their eyes at me, but they do so while looking at one another, like I am a bad television show they are watching and can safely comment on. Such a gringa this one, no? What they really want to know is what I dreamt. For Mami and for me, during our bouts of amnesia, our waking lives were punctuated by a constant state of confusion, but our dreams were grounding. Mami's dreams were sequential, and in her dreams she was a ghost. In mine, I had no body, and as I say this to the tías out loud, I realize I, too, believed I was a ghost. We have a word in Spanish for the walking of the dead - desandar. To un-walk. To walk until the walking is worn thin, to walk until the walking undoes even itself. That ghosts have a particular way of walking is an idea we inherited from the settlers who invaded the continent, but what is intrinsically ours is the sense of porosity, an understanding that we live between the real and unreal, and that often they are one and the same. So, to us, the living go on ghost walks too." Thank you
- That was wonderful. It's wonderful too to be here tonight in this chilly, chilly night. And I was remembering that the last time I was at Amherst was for the graduation of my brother 20 years ago, no, two years ago. And he's here tonight, which is a wonderful rejoining. So I'm thrilled to be here to talk with you. I'm gonna read just a couple of paragraphs from my book, in a chapter called Impersonation, it's chapter four. And this chapter is trying to do the work of animating from inside from within, something about the lived experience of certain kinds of chronic illnesses that bring with them symptoms we don't understand very well. Symptoms like brain fog and fatigue that are often deemed subjective, but are deeply real. These symptoms bring with them a kind of language problem because we don't know what they are, and we don't know how to describe them. Impersonation. "One of the hardest things about being ill with a poorly understood disease is that most people find what you're going through incomprehensible, if they even believe you are going through it. In your loneliness, your preoccupation with an enduring new reality, you want to be understood in a way that you can't be. Pain is always new to the sufferer, but loses its originality for those around him. The 19th century French novelist, Alphonse Daudet observes in his book, "In the Land of Pain." Everyone will get used to it, except me. Worrying that your symptoms are psychosomatic or even imagined is part of life for many people with poorly understood illnesses. Although the experience of illness is not just in the head, it is also not just in the body. The person enduring such an illness faces a difficult balancing act. On the one hand, she must advocate for herself even when doctors are indifferent or ignorant and not be deterred when she knows something is wrong. On the other hand, she also must be willing to ask whether an obsessive attention to symptoms is going to lead to better health. The patient has to hold in mind two contradictory modes, in other words, insistence on the reality of the disease and resistance to her own catastrophic fears. I found it hard in the fall and winter of 2012 to strike that balance. I was increasingly worried. After all a terrible anxiety attends chronic illness. Over time, it becomes difficult to untangle the suffering from symptoms like pain, from the suffering inflicted by the anxiety over the possibility of more pain and worse outcomes in the future. This does not mean that the illness is in the mind, rather the mind, that machine for making meaning makes endless meanings of its new state, which may themselves influence the experience. It was in this recursive hall of mirrors trying to adjust to my body's ailments that I lived. There is a loneliness to illness, a child's desire to be pitied and seen. But it is precisely this recognition that is elusive. How can you explain and identify your condition if no one has any grasp of what it is you suffer from and the symptoms themselves wax and wane? How do you describe a disease that's not always there?" I'll stop there. Thanks.
- Thank you both. It's just so wonderful to get to hear you read your work out loud after having read these books and sort of inhabited them for a while. Both of these books hold so much. In the case of "The man who Could Move Clouds" it navigates a multi-generational family legacy of curanderos in the context of Colombian history. And "The Invisible Kingdom" tells a personal story of chronic illness against the background of our medical systems, difficulty navigating such illnesses. So I wanted to ask to start us off, when did you decide to set out on the journey of these books? Was there one moment when you decided you needed to write this down?
- I can start. I think, you know, I always wanted to write this story. Growing up, my grandfather died when I was one year old, but I always heard stories about my aunts and uncles and they would describe him moving clouds. And then as I was growing up, I also met different people who my grandfather had treated and he used to have like a healing business in his house. And curanderos usually use like a mixture of plant knowledge and prayer and ritual and it's just a mix of, yeah, medicine and older indigenous things and newer, modern things. And I was just always really fascinated by that story. And I always really wanted to tell it. I think that it was probably after I lost my memory in 2007 and when I regained my memory and remembered that story, I think it was the first time for me that I suddenly knew how to tell it. So for me, it just really took kind of like the everything being gone and then returning again. I just saw it in a different light that I hadn't seen it before. And I think I just, I suddenly knew exactly how I wanted to tell it.
- That's interesting, this idea that everything being gone can create the void that makes you wanna fill it, right. I think something similar happened for me actually, which was that as the book recounts, sort of, my story of getting sick, which the book recounts is a difficult one to tell because I didn't have a dramatic beginning to the illness. It kind of came in waves, starting when I had just graduated from college. But it was, in fact, after my mother died, I got very, very sick with a virus and I really never recovered. It was kind of like falling off a cliff suddenly. And I think into that absence came this desire to find language for what felt like a void that was unnavigable in some ways. And I think what happened for me as a writer was that I quickly began to feel that what was a biographical problem, which was that I was ill was actually also a literary or a linguistic problem because the nature of my illness was to resist being named or categorized. And so there was no way for me to experience my illness as almost anything but a kind of linguistic literary problem as well as a biographical one. And I think it was the moment I understood that what I was looking for was language, and that in the absence of language, I was radically alone, like many, many other people, ironically this invisible kingdom. That was the moment that in a way a kind of quest began, not only to get better, but actually to find the language for the experience that I had no language for.
- I'm so glad that you brought us to that question of language 'cause it's something that struck me about both of your books, trying to find language for something that the medical system maybe isn't recognized or has trouble recognizing, right? Or trying to find language for like the supernatural or an inexplicable force. And yeah, I'm just really curious about how that process took place for you. Like how do you find language for the things that resist it or for the things that don't have language yet?
- I guess one of the things that I really love doing when I'm writing is if there is, if there is a mystery living in a story, I try to resist the impulse of solving the mystery and instead of just sitting with the mystery. And so for me when I was recollecting stories for the book and thinking about what stories would go in there, one of the most amazing stories to me is that the night that my grandfather died, my grandmother had this dream and they had, she loved him very much and he was kind of a toxic man. And they were separated, but she had this dream that night and he came and they made love in her bed. And then when she woke up there was dirt all over the mattress and then there was mud in her underwear. And she somehow knew that that meant that her estranged husband had died. And so the next day when people told her she already knew, and she just repeated that story over and over again of the dream that she'd had. And to the day where when I was growing up, she would tell that story to us and she would say, "I knew at that moment what it was like to make love to a ghost." And so, you know what I mean? And so it's a story that's so beautiful and regardless of how the dirt ended up there, it's almost like if we try to solve the mystery of the earth on a mattress, then everything, the meaning is lost. So for me, I just try to preserve the meaning and sometimes that meant allowing myself to sit with the mystery.
- And it reminds me, in your case, Ingrid, of you talk also about kind of the artificial distinction between like fiction and non-fiction or like the true and the untrue. Does it play into that for you as well?
- Yeah, yeah. I think and when I first started to think about this book something that happened in writing circles was that I would be told, I would be writing a story about my grandfather and I would say people said that he could move clouds. And people would be very corrective to me about that. And they would say, no, that's fiction. And they would try to kind of try to make me write that way. And then in the beginning I had just arrived to the US, and I think that I, for a while thought that maybe I was wrong. So for a while I thought, yeah, maybe my life or what my family, our culture is fictional. But in the writing of the book, I started to think about the politics of what we call fiction and what we call non-fiction. And the politics has to do with who is the one who gets to say this is real and this is not, this is history and this is folklore, this is religion and this is whatever the other thing.
- Absolutely. And it feels like a political question, in your case too, Meghan, giving a name to here to , things that the body does, finding that name or sort of advocating for it. And so I'm curious, I'm also asking for a friend kind of thing in this situation 'cause I have a chronic illness and I've also tried to figure out how do I find the language to describe my own experience? Excuse me. So yeah, I'm just curious, like, how did you do that in your case?
- Yeah, well I got so wrapped up in what Ingrid was saying and thinking, it's interesting how there're overlaps in books that are so very different in some ways, but I think in other ways have a shared set of concerns about the work that language can do not only to name what might otherwise go unnamed and therefore either unnoticed, poorly understood or actually never even seen, but also how language is inherently in many cases political, right? So part of the work of describing that I'm doing in the book is not only explaining to myself what was happening, but using that act of explanation to start to try to make a larger social point, which is to ask why we actually put so little stock into the testimony of those who live with illness, right? That the language of people who are sick is often regarded as a kind of either degraded language or almost the language of people who are somehow infantalized by their illness, right? So in the medical system, patient's testimony is actually one of the least important factors in making a diagnosis. So there's even like a, you know, weight to various factors and of course lab tests in our biomedical age are the most important thing for many good reasons. But I became very, very interested in how did we get to a point where the person inhabiting the body became almost by definition an unreliable narrator. And was that an evolution that we knew we had embarked on, that we all wanted, that we were comfortable with, and what did it tell us about our society and how we think about health and illness and our own discomfort with, in particular illnesses that can't be resolved, that you can't muscle through, that you can't sort of just do it and come past it.
- I'm wondering too, how research plays into this, how building sort of the compendium of information that you give us. For both of you, maybe I'll ask this of you right now. Meghan these conversations that might happen between patients and doctors, these things that might be outside of the book form or not often attended to, as you're saying about patient testimony. What was it like kind of trying to gather research for this book and use your conversations with people to try to also bolster what you're talking about?
- Yeah, so I think in my case, as I just said, I got mysteriously ill, it took, if you can believe it, 15 years before I got any kind of diagnosis. And then I got a lot of diagnoses, so that was great. But the title, "The Invisible Kingdom" in the book is meant to evoke the fact that in fact the kinds of illnesses that I'm writing about are all too common. And in fact, autoimmune disease is on the rise in Western countries for reasons that are themselves poorly understood. But that rise is pretty well documented, right? So I was interested. The research came into the book because the very early, well, from the very beginning, I knew that I wasn't only telling my story, I wasn't actually particularly even that interested in my story, except insofar as it became this angle onto the problem of finding language for something that so many people were experiencing. I was interested in my story insofar as it helped animate this murky lived experience of people who often are not believed. So I knew from the beginning that research was really, really crucial because research was the way I would answer the questions that I had as a person to whom this happened to be happening, including why was it hard to be believed, why in an age where you can get a diagnosis for ice cream headache, it's called Sphenopalatine ganglion neuralgia, right, you can go get that, I couldn't get a diagnosis, right? Like it was really intellectually interesting. The other reason research was really clearly important to me was that as a person with an illness, I had been lurking on message boards as one does, as a 21st century patient. I was in all these groups. And a narrative, and it was a narrative, that I saw over and over again was a narrative of people saying, I have an autoimmune disease in which my immune system is attacking my body, and therefore something about my life must be wrong. I'm living an inauthentic life that is causing my immune system, which is supposed to defend me, to attack me. So me is what's wrong, right? And this seemed patently wrong to me, right? Because we know that there's a reason that these diseases are rising in western countries, there's theories that have to do with changes in the microbiome, chemicals, food, et cetera, et cetera. So I thought, okay, this is really interesting. All these people are individually telling themselves a story that in some sense the culture is feeding them. And it's a very common kind of story that we tell in this country, which is that you as an individual are responsible for your illness. But in this case, it's very clear that there are these social political, you know, underpinnings that we actually need to look at, this invisible kingdom as kind of the product, sorry, of a kind of a social problem. And also illness itself is not as isolating as it is. It's the thing that also connects us all, is our mortality and our fragility. Right? Does that make sense?
- Yeah, so thinking about how the research brings that collective story together in a certain kind of way.
- Yeah, exactly.
- Thank you so much for that. And I'm thinking about, you know, the collective story that you're telling Ingrid too, right? Largely a family story, but also beyond your family for sure, and maybe how research played into that, I'm curious.
- Yeah, the research was fascinating. And yeah, Meghan, as I was reading your book, I was also just really fascinated by all of the things that our books share and then so divergent at the same time. With research, something that happened was that I couldn't find what I was looking for very early on. And part of it is, for example, like I went to the village of Ocana which is where my family is from. And I was doing what I would think is kind of like the basic research of I'm just gonna get down the family tree and I'm gonna find the documents for everyone in the family. And I went to this place that was right next to the church, and they keep all the records of baptisms. And I just, I could find my mother and her parents. And then on each side what happened was that the husband or like the father would be, was born out of wedlock. And so then that meant that that document only had the mother's name. And so it was then became very difficult very quickly because I couldn't work my way up. And I kept asking for, I kept making approximations of, okay, so say that they got pregnant here, and then they were born here. And I just started to guess and just ask for more and more books. And I couldn't find answers to anything, but I just kept taking wild notes when something seemed similar. And I went back, like, I was just there for four days just asking for books. And at some point they gave me one of the oldest books that they had. And I opened it and I was looking at it and I was actually admiring this very beautiful calligraphy. And when I tilted up the book, the pages were not connected to the book itself and so it started to slide down. And then the paper grain just kind of tripped over itself, and it all just became a cloud of dust that just filled up the room. I like breathed it in. And for me it was just this metaphor of we are not in the record, like people like us are not in the record. And it just, that question or that moment led me to look into maybe older documents or just the history of colonization and what happened through that. With curanderos, it would've been that very early on during colonization there would be like the Spanish Inquisition. And so anybody who was practicing indigenous things that would be witchcraft and then you would be sent to be tortured. And so a lot of that went underground. So I just finally started to find the answers about, why is it secretive or why is there no history that I can look at? And inevitably it just led me to oral traditions and it led me to discover like, oh, that's where it lives. Like we're not in the record, but it lives in oral traditions and it lives in a different way. So I started to lean into that different history.
- I love that story, and I remember that moment from the book so well. And it made me think a lot about the book form, right? We're kind of at Lit Fest celebrating the book form together and thinking about what that can do. And so it made me think about what does it mean to bring these stories into the form of the book, right? And particularly in non-fiction. You're both coming from other genres, from fiction writing in your case and from poetry and journalism. What does it mean for you to work in non-fiction? I feel like we often ask, we say in poetry, what can poetry do in the world, what can fiction do in the world? But like, what can non-fiction and non-fiction book do in the world for you?
- Well, we were just talking about this a little bit, weren't we? It's interesting. So there was this moment when I walked out of a doctor's office on a kind of humid New York Day, and she had really patronized me and I was really suffering and I had high hopes for her. She was someone who'd been highly recommended to me. And she just kind of was like, well, maybe you just need to try hard. I can't even remember exactly what happened, but I came out and I started to weep and I just remember leaning against this very dusty car on the street and feeling as profoundly alone as I had ever felt. And in that moment, flashing on this image, it's not a lie to tell you this, of this invisible kingdom, right, of this idea that there were just many, many, as profoundly alone as this experience had made me feel, I was actually one of millions. And so for that reason, it became very important to try to tell this my own story and the research that I did in the form of a narrative. And in the form of a narrative in particular that would have the capaciousness to kind of problematize or into question other kinds of narratives that we told. And the reason I wanted to build a narrative of it was that it seemed that no one could, right? This was a story that no one wanted to hear and therefore was a story that I and others couldn't in fact tell. But interestingly, to tell it, I wrote the first chapter and then I was completely stuck for a year. And finally I realized I had to write some poems about the experience. And I began to write these lyric essays where there was no possibility of solving the mystery, the essays, the poems were about the language being incommensurate to the experience. And it was only after I wrote those poems and allowed myself to kind of wildly fail that I could go back to nonfiction, which had, at its heart this task of actually trying to communicate, right? Trying to say something. And something about the experience of writing the poems allowed me to find a narrative form in nonfiction that was truth telling and that told the truth about all that could not be said, right? Does that make sense? But hopefully in a way that also gives you a sense of urgency and propulsion that there is this mystery that we're after. But there's something about the non-fiction that interests me the most brings into it silences and like lacuna and ruptures and the cloud of dust and all that can't be found 'cause otherwise it's not true, right? So I had to discover that through playing with different forms and genres.
- I think for me, I guess there was one moment where I knew for sure that I had a book in my hands. And so it happened when my aunts, like my extended family found out that I had had amnesia like my mother and everyone got very excited. And then a few weeks after that, two of my aunts and then my mom had a dream where my, independently of each other, they just all dreamt that my grandfather came and said, I want my remains to be disinterred. And so, because it happened to three of them, and we say like, when you have a shared dream like this, it's kind of like a peer reviewed dream. So then that meant that we just, we were like, well we have to do it. And so we just bought tickets to go to Columbia and we were like, how do you disinter a body? Like what do we do with the body? Like we just had so many questions, but there was this like that, I just, I knew at that moment as I was getting on the plane and we were going to do this, I knew at that moment like, this is a book and it had to do with this receiving an errand from the dream world, like that concept to me was so fascinating. And I was always just really interested in the cycles in families, especially in mine. And I think for everyone, there's probably cycles within everyone's family where you live something out that maybe your mother lived out. And it's strange that it's repeating like that. Yeah so for me it was, I just couldn't, just after getting amnesia, I just, I had the hardest time just even understanding that my mother had amnesia as well and that like the two people that I knew had amnesia. So it was just, yeah. And so yeah, I think that, that was the moment where I just got so excited about the journey back and what it would mean to disinter this person that everything came from.
- I feel like at this point in the conversation, I really wanna ask about ghosts, something that comes up in both of these works. I also wanna say for those of us who are writing questions, I just wanna remind you to do that and I'll ask a few more questions of course. But please write down questions you might be interested in hearing the author's answer. And we'll collect those and in a few minutes, we'll ask them. But I have these two quotes and I have to read them back to you, forgive me. But you have this sentence or this phrase in the mannequin move clouds, you say the pliable texture of memory has its uses. It leaves breathing room for the ghosts. And Meghan, you have this sentence that you're talking about kind of at the nadir of your illness, this idea of like the ghost of your self kind of inhabiting you in some way. You say "ghosts haunt themselves into being." So I'm wondering what kind of ghosts have inhabited these books and what do you do with those ghosts once they arrive? I don't know if it's connected to this mystery, you know, or this kind of like the things that are difficult to language here, but what happens when a ghost is in the text or in the process of writing it maybe?
- Yeah, that's a great question. I've never been asked this question. I think for me writing, maybe it's because I'm a poet. Poets are always disappointed in the poem, right? Poem is never what you think poetry is. And so for me, any act of writing is an act of failure, the sort of failure to catch up with thought, the thought trying to catch up with the word on the page, the pencil, the typing. And I think of each book as being a kind of palimpsest, that term that describes ancient tablets that would have the mark of writing below the surface, previous writing, other writings, perhaps other hands writing. And so the ghosts, literally that ghost is the ghost of a self that I had lost in the book, but I couldn't write the book without animating that loss. But I also, I couldn't reanimate the loss, right? So there's a kind of paradox or failure there. So I'm very interested in my writing in looking at where we usually paper over loss or we paper over ghosts and hauntings and we put them behind the wall. And I kind of wanna welcome the ghosts in, I think, the ghosts that trouble narrative, that trouble tidiness, that trouble the home and ask what happens when we look at them. Yeah, that's an abstract answer, but I think that's part of what's going on. And the palimpsest is connected to it, right? It's like this idea that there's, we're all haunted by ourselves in the past and the writing that's come before us, the thinking that's come before us, the thinking around us.
- I think that I just, I felt the most like a ghost during that time when I had amnesia. And part of it was that I was walking around a space that was supposedly mine, like my apartment and I couldn't recognize anything. And I would take journals from the bookshelf and open it and couldn't recognize the handwriting, but I knew that it was supposed to be my handwriting. Or I would look at, take out the ID and see my name and read my name a hundred times and it still wouldn't be familiar to me. When I was writing the book, I was just fascinated by that feeling of being suddenly outside of your life. And for me it, I would've guessed before having amnesia that that would be a very sad, or I don't know, tragic or distressing experience. And I was the happiest that I've ever been in my life. I've never been happier than when I had amnesia. And I think that it was just this, I had no, you know how you just sit and you're like, I can't believe that I said that at that party. And you're thinking about a party that happened 10 years ago. When you have amnesia, you have none of that. So you're just kind of sitting and it was this, it was kind of waking up into this state of astonishment. I was just astonished by everything. There would be sunlight coming through the window and I would just kind of be losing my mind. And it was this kind of, this act of being present that I still kind of try to hold onto or I try to kind of call back. But it's very difficult when you have a memory 'cause you're thinking about that party 10 years ago, you know? But I think that there are many ghosts in the book. Probably the ghost of my grandfather is one that is throughout. Like he appears in dreams. He's someone that touched so many people's lives in a good way, in a bad way. And I also kind of grew up, my mother would do, sometimes I would see her do exorcisms and that would be something that was part of my language kind of growing up, having seen, yeah, so many, many types of ghosts and hauntings.
- I'm thinking about how both of these books, of course have illness and healing both deep within them. And I wanna ask a question about healing, like if that can happen in this work, especially maybe it's inviting the ghosts in or like letting them inhabit the work in some kind of way. I've been asked about my own work, was this healing for you, was this therapeutic for you? And I always kind of resist that question, so I'm not sure that I'm asking that. But in the context of talking about curanderos or in the context of talking about how we can make our medical system better, what does it mean to heal for you, for this work maybe? That's a big question.
- Yeah, I'll answer it. I think that sometimes healing is just sometimes living with whatever happened to you. You know, sometimes healing is not returning to a place where before something happened, but just kind of making room around, you know, whatever happened that is now different. So kind of growing around a wound or learning to carry something. I think from just watching my mother and the people who would come to see her, one of the most, you know, the things that she was the most popular for was that she would fill these like soda bottles with water and she would breathe prayers into it depending on what someone wanted. So there were a lot of people with broken heart that would come she would breathe prayers into this water to help them with the broken heart. And it was, I don't know what was happening, right? But I would see the change in people as they came back. And you know, whatever was happening, the water was doing something, right. And as a teenager, like any teenager, my sister and I would just make fun of my mom all the time for this. And we would just be mocking her and we would blow into each other's cup of coffee and we'd be like, you'll get an A in math today. And we just, you know, and then at some point my mother gave us water for healing and for some reason, she first gave it to my dad 'cause she said that we all had to take the water. So my dad did it first. For some reason, he went to the bathroom and threw up and we were like, that's really strange. And then she gave the water to my sister and my sister was just kind of like, fine, I'll take it. Are you happy now? And she took it and then she had to go to the bathroom and throw up. And then I was like, I don't understand, like, what is going on? And then I took the water and I threw up. You know, so there's, and I like after that, like whatever happened, I have no language for, and it's kind of, it's still unnamed, but I know that after there was this feeling of release, and again, like right, you sit with the mystery of that. Like I'm not sure what it does, but I know that there's something to someone caring for you in that way, or there's some wounds that we have that are so deep that nothing can touch. And maybe someone breathing into water and a prayer into water and giving you that is a way of touching that and we respond maybe. So yeah, that's my answer about healing.
- Thank you.
- It's hard to say anything after that, that was just yes, all of that, that's amazing. You know, I think what I can say is that I always resisted, or maybe still do when, when people say, oh, was it therapeutic for you? But I actually wanna say that in some way, writing this book was therapeutic for me. I mean, that wasn't why I wrote it. I wrote it to try to find a container for this experience that I thought needed to be made legible. And as it turned out, finding a story where there was no story was an incredibly transformative experience for me. And actually not just finding it, but then hearing from readers, which as a poet I don't always hear from readers. One does a little bit, but poetry for me is really different. It's just much more internal. It's almost like meditation. It's just about language itself. But there was something dynamic and kind of transaction, not transactional, but social actually in the experience of publishing this book that has been really, really interesting to sit with and think about. And I think it speaks to why we're here tonight, which is just that story. There's a reason we tell stories. Stories are healing, stories told well, told honestly, told bravely, told with humor, told subversively, we need stories in order to live as Joan Didion said, in a slightly different way. But I think too that there's a way in which writing and reading can be forms of ritual. And you were talking about ritual, and I think that for me, that act of sitting quietly in a room present with something is an act of ritual. And one thing that was really true when I was sick, and I heard this from many of the people I interviewed for my book, was that they felt they couldn't begin healing or even adjusting to being a chronically ill person because so much of their energy was dedicated to persuading other people of the reality of their disease. And one person said, I can't adjust to my illness because I have to make everyone else believe it's there in the first place. And so energetically, if that's what you're doing, you never are able to get to the healing. And so I think there was a way in which the book was that act of persuasion that then sort of facilitated that too, if that makes sense.
- Thank you so much. I think I'll ask one more question and then we can have some audience questions. So if whoever's in charge of the basket wouldn't mind collecting and bring it up in this direction, if there is a person in charge of the basket. Do we have a basket person? We could self appoint. Oh, thank you so much. If you wouldn't mind collecting those and bringing those up, that would be wonderful. Just walking through the aisles and grabbing anybody who has a question for us tonight. But yeah, in the meantime, I think I'll ask us one more thing to bring us a little bit full circle with, you know, I asked you at the very beginning like what was, what started this, you know, what made you have to write this book? I also wanna know what got you through the hard work of writing it? What brought you to this place, you know? What was maybe the one thing, even if there were many things, that allowed this work to be possible.
- It took me 10 years to write my book. And the way I got through it was that every day would sit down at my desk when the Brian Lehrer show on WNYC started. And the little like jingle to the music would just get me going. So that's the facetious but true answer. It wasn't candles or discipline. It was like, okay, Brian Lehrer is starting, I've gotta get to my desk. But I think the deeper answer, and this is something I say to my students all the time, 'cause they're like, well, maybe this is a book or maybe I wanna write this book. And, you know, having a book, writing a book, I was like having a book, it's like having a child, you live intensely with it. It takes you out of the world around you. It takes you away from the sunlight coming through the window. It takes you into its own world in which, for me, at least when I'm writing a book, it's like I'm walking through the world and debris is coming at me that suddenly I'm like, that debris is related and that, and that and that, and the world starts to make sense in the sort of scope of this story. So you have to just be obsessed with your book, I mean, to the detriment of even yourself and other aspects of your life, I think. And in my case, that obsession was, I felt that we were ignoring the lived reality of millions and millions of people. And I felt an incredible, it was my duty in some sense to try to animate that experience, explain why we were ignoring it, and hopefully try to, you know, through the power of story, facilitate a conversation and start making change. There was a kind of end point for me in that.
- I love this idea about obsession. I think that's a beautiful way to put it. I think my own obsession or the thing that got me through it was just thinking that I hadn't so much seen curanderos in non-fiction, that I had seen them in fiction and loved those books. And I just really wanted to see that in non-fiction. Facetiously baths for me were the thing. I had all of these bath bombs that were amazing. But I would, a lot of... I have like this tray and I would bring the computer into the bathtub and write in the bathtub. Which if it's not connected, if it falls, you'll be... You won't die but you will feel like the shock of it. So I did kind of research it and was ready for that.
- I've wondered this for a long time. So I'm glad now I know.
- If it's not plugged in, you'll be fine, but it will hurt.
- As writing does.
- So that got me through.
- That's great. Thank you so much. We have some great questions here. Thank you all so much for sending these up. First that folks have, what is the biggest challenge about writing non-fiction and your up, sorry, about two biggest challenge about writing non-fiction about your own experience. What made you choose non-fiction rather than a fictionalized form?
- Yeah, well, in my case, it was really important to bear witness to reality, a reality that I felt was going ignored. And so it felt like I had to bring the full weight of reporting and research and my own experience and the sort of reportage on myself to do that. I think the hardest thing in a way, from a technical point of view when you're writing non-fiction is that, about yourself, is that you are yourself in the present as the author creating the book, and you're writing about a past self who does not know what you now know. And you want to, on the one hand, be true to that self and enact that self, but to pretend you know nothing of what you now know would also be false and dissatisfying. And so it took me, I would say like about a year to find the voice and the structure that was capacious enough to allow me to both inhabit that prior self who did not know what was wrong and was desperately searching for answers, but also be able to pivot to this present day self who had done eight years of research talking to like leading scientists in the country and interviewing a hundred people with illness and reading everything I could read. And I had to figure out how it would be persuasive to the reader and not disorienting for me to go from, the state of not knowing that it was trying to evoke and summon up to this kind of expertise. And that was the hardest thing to figure out, like kind of from a technical point of view.
- Yeah. I would agree with that. I guess for me the story was so good already that like even if I wanted to embellish to make it better, I wouldn't even know what to do. You know, like it's just, it's already just so, like every element of it, I'm like, that is great storytelling. Like, you know, whoever was in charge of this amazing. But I think for me trying to put into language what amnesia was like, was probably the hardest part, trying to kind of get across what is the state where you don't know who you are at all and you can't remember your parents, and like what is that state of being and how do I put that into language?
- Thank you. We have a question from Meghan. How does the process of writing about grief differ from writing about chronic illness or illness that doesn't result in death, like non terminal illness? How can one through literature grapple with terminal illness and what's the difference of doing that with chronic illness, I suppose?
- Yeah, I mean, as far as I knew, I did not have a terminal illness, right? So I don't know them much about writing through terminal illness, except insofar as this illness that I have will be with me till I die and might contribute to my death. But so the difference in fact for me, with chronic illness and grief was that there was a kind of propulsive narrative element for this book that there wasn't in grief, which is that in grief you're in it and it's very intense and you're actually waiting in some ways for it to ebb. So in my previous work of non-fiction, I wrote about grief after the death of my mother when she was 55 and sort of chronicled a year of living with very, very intense grief. And so that book was really challenging to write because in a way it was sort of had an anti narrative, both books do, but this one in that book, you're waiting to go from intensity to kind of a release of that intensity, but it didn't have like a dramatic ending. The ending was kind of like, I feel a little better now. Whereas in this book, there really was this search for an answer to what was wrong, and there's a way in which I get that answer. It turns out to be much more complicated than I thought it was going to be. And it turns out that the quest I was on was the wrong quest in some sense. But actually the more I thought about this book, the more I realized this was a book that actually did have a kind of dramatic arc, even though part of what I'm writing against are illness narratives that have like a dramatic reveal in which you recover. Because in my book, I don't recover. What I learn is how to live with a body that is imperiled, you know?
- This is a question for Ingrid. When telling the stories of others in combination with yourself, how do you balance staying true to their experience? How do you stop your biases and views from perhaps changing what others felt and saw?
- I really enjoy writing a scene out as I remember, and then calling that person on the phone and saying, this is what I think and this is what I think happened and this is what I think, you know, about why you were doing that. And then the person will usually have something to say about that and they'll be like, you're completely wrong. That is not what happened. These were my intentions, I was going through this. And then what I like to do is to then introduce that into what I've already written. 'Cause I don't really believe that anybody holds the true account of something that happened, but I think maybe we get closer to a truer account when there's multiple versions of what happened and memory is so pliable and so personal and emotional actually that what we may remember just may have to do with what we were living through at that time specifically. And I love to insert those complications into the text. And sometimes that would mean having really difficult conversations with family, what I would be talking about difficult times and if there was any kind of like harm doing or wrongdoing, then I would have to be upfront about what I thought about that. But as part of my own process for non-fiction, I feel that if I am going to say something in the book, that I would rather have it be a conversation first before I write it. So if I'm not willing to have that conversation, then for me, it feels like I haven't earned the, I don't know, what it takes to be able to put it down.
- Thank you. For both of you, what was the most effective kind of encouragement you received that helped you finish your book?
- Hmm. That's a good question. I don't know. I mean, I had small children and they kept saying, when are you gonna finish your book and play with us? So, I dunno if it was, it was a kind of encouragement, but they still are like, do you remember that year when Daddy took care of us? Yes, I do remember that year. Yeah, maybe that probably is truthfully the strongest encouragement I had.
- I was writing a lot of the book, a big bulk of the book during pandemic, and I'm friends with , and he was writing his novel that is coming out soon. And we were just getting on Zoom every once in a while, and every time when one of us would hit some kind of milestone, we would send the other a bottle of wine and then we would, you know, get together and kind of celebrate. And we just did that at different moments throughout. Yeah, so I would say that was really, that was one of, that was like a, such an encouraging part of it.
- That sounds much better. I'm gonna ask my children to send me bottles of wine.
- This writer says, thank you both. This is a question for Ingrid. What does it mean for you to be writing about your family in English? Did you encounter any interesting translation problems?
- I did all of the time. You know, what was fascinating is that when I first like, I think for the first couple of days of amnesia, I did not remember that I spoke Spanish. And so it was only after my phone rang and I looked at my phone and it said Mother, so I knew that it was my mother calling. And then she started to talk in Spanish. And I was just like, I can understand Spanish, this is amazing. And yes, Spanish is my first language. I think that I'm always trying to, when I'm writing, what I like to do is to have language seem like it's, you know, on the outside English, but on the inside Spanish. So Spanish in wolf's clothing is what I like to say. And I try to do a lot of transliteration and I think the language is more interesting that way. So I try to think of everything in Spanish and then do a very quick internal translation and just do, kind of try to do the wrong translation. I try to do kind of like a clumsy translation. And I find that there's a lot of poetry that comes from that, from just doing it wrong.
- Thank you. Thank you both from the pre-health community at Amherst. This work is so very important. This is just a thank you. And could Meghan speak about long COVID and its connection to your book?
- Absolutely. Yeah, so I was, I don't know, close to being done with my book when the pandemic started. And in fact, part of my book was already about, in particular, autoimmune disease and other diseases that are, some researchers increasingly think are what they call infection associated chronic illness. So the kind of illness that I'm most specifically writing about are illnesses that through a kind of accident of biography and environment, including exposure to viruses, your body doesn't respond the way others do. And instead of recovering, you kind of take a hit, right? And you don't quite get better. So I was talking to virologists and they started saying, you know, pandemic's coming and there's gonna be a big problem potentially because we don't know anything about what this virus does to the portion of people who may have long-term effects. So that's just a long way of saying that. Early on I started lurking on message boards and kind of looking to see what's going on? Is anyone saying they didn't get better? And by April, end of April, I was seeing people say I got sick in March and I'm supposed to be, you know, the whole idea then was it was 14 days. And you know, I'm on day 36 and I'm still sick and this is what I'm experiencing. So I started reporting, I started following people and talking to them and began writing a piece that I then published in The Atlantic, which was one of the first pieces about long COVID a long feature where I followed people for the first year of what was going on. And basically for me, it presented this challenge, which was that it's so tied into what I was writing about, but I wanted to have a really ethical relationship to it, and not to kind of like tuck it in as a reason my book was timely and to just sort of say, and now long COVID. So it really took about an extra 18 months with the book just to report out that long COVID section that's a half a chapter. But I felt that ethically as a non-fiction writer, I needed to really, really spend time with this and think about how long COVID mapped on to what I was already writing about, how it was different. And what I can say is that essentially it mapped very, you know, completely onto what I was already writing about, which is this idea that just for some people, you are genetically susceptible to not recover fully from a virus, you know, that might be Epstein-Barr virus, that might be other viruses too, but in particular Epstein-Barr and SARS Cov2 seem to trigger this kind of long-term inflammatory reaction. Or also maybe there's viral persistence in a more significant cohort of people than other viruses. So I had the feeling a little bit of being like the first at an accident scene. You know, it was not a good feeling, but it felt like, okay, I'm here and I've gotta stay here and really see this through.
- There's a couple questions about audience in here or like thinking about how you approach the folks who are reading the book. One is, do you prefer to think of writing as a process for yourself or something towards others? And the other is, when writing your stories, do you first think of who your audience is or does that come later in the process? So you can answer either or both.
- I mean, all of the, you know, like everything, all of those things in a way. I think for me, poetry is very, when I'm writing poetry, I'm not very much thinking of audience because one's tastes in reading poetry are so singular and idiosyncratic that it's much more about language as a material and thinking about what can't be said in other mediums. But in a book like this, I definitely was thinking about audience and I had a very specific thought, which was that I didn't want this book to be read only by people who are chronically ill. It's very much for people who are chronically ill. I really want chronically ill people to read it. But I also very much wanted people in the medical establishment, loved ones, caretakers, people who have no connection to chronic. Because chronic illness is such a major part of American life at this point, even before COVID and now more than ever, that I had to really think about audience because I had to think, how is the person who's not having this experience, how am I gonna make them interested? How do I ask them to spend their time thinking about this? And that's where kind of my work as an editor came in 'cause I had to put on my editor hat and think, okay, how do I pull them along and how do I edit my work to do that? What about you?
- I was thinking about, I think that I wanted to tell the book like how my family tells stories. So I constantly in writing the book, if I ever got stuck, I would just call my mother and be like, can you tell me a story? And I would pay attention to what she does when she does it orally. And she's an amazing storyteller and probably the person that I learned about writing the most was from her. And I'm just really fascinated by the structure that she uses. And so in this book that was something that I was thinking about. So I think that I just wanted the reader to feel as though you're listening in as my family is, the style in which we would tell it and the way that the story shifts and turns. It's very much how we would say it out loud to each other. Yeah, so for this book, I really wanted that feeling there.
- Thank you. I think I'll ask one more question. We have time for one more. And I wanna say before I ask that question, after we're done, we'll move some tables outright there and we'll do a book signing. And if you'd like to get a book signed, or even if you can't get a book tonight, because I know we're out of Meghan's books right now, I'm sure we can find something for you to sign and we can put it in the book later when you order it. So don't be shy to come up and say hello and get something signed. So we'll line up in that aisle right there and I'll ask our last question. So at what point do you discover or understand the purpose of the story you're trying to tell? At what point in the process of writing these books?
- I think probably at the end, probably I reached the end the first time, the first draft and understood what it was about. Sadly that happens to me. That happened with my novel as well. I had to reach the end of the book and then say like, oh, it's about this. Yeah, I don't know, that's just how I work I think.
- Yeah. Very similar. So this book took me a long time to write, partly 'cause I was sick, partly cause I had children in the middle and my father died, but it was with me for a long time and I was thinking about it for I'd say eight years. And in about a year, seven and a half, I had a moment and I went racing downstairs from my little attic office to my husband who was having his coffee. And I said, "I know what my book is about." And he said, "what?" And I said, "uncertainty." And he was like, "I dunno if that's gonna sell." But I really did. I was like, the moment where I was like, oh, right. I thought I was writing toward an answer, but actually I'm writing toward a proliferation of possibilities and uncertainty. And in fact, my book is about what the 19th century poet John Keith calls negative capability, which is the term he uses to describe, he's trying to figure out what makes a great artist great as opposed to the much more full ranks of the good. And so in trying to figure that out, he writes to his brother and he says, I think basically what makes a great artist great is that they have negative capability. They're capable of remaining in uncertainties and they don't have what he calls this irritable reaching after fact. And it's such a great line. And it was really in that morning when I thought, oh, right, that's what this is about. It's about learning to live in uncertainties and what happens when you realize that your quest, which is to find answers was the wrong quest. And the real goal of your quest was actually to become educated about. It's like your amnesia story, the power of the sun coming through the window even as you're suffering. The now even without answers and what would happen if we all undertook the radical act of being in uncertainties together.
- What a wonderful place to end. Thank you both so much for this conversation. Thank you.
- Thank you.
- Thank you so much.