Our Long Marvelous Dying by Anna DeForest

One moment of Anna DeForest’s Our Long Marvelous Dying, just published by Little, Brown and Company, captures the immense grief at the root of their new novel:

 In the interval between giving a dose of intravenous opioids and seeing the peak effect, I will sometimes pass the time by catching up on the news. There is almost always a disaster imminent…You get used to it…

A sense of resignation and detachment pervades the story told by an unnamed narrator, who works as a palliative-care fellow in New York City after the peak of the early COVID-19 pandemic.  In the first chapters, she recounts aspects of her training as a specialist, who “serves as a sort of illness interpreter, bringing the jargon of clinical medicine into the life and language of the patient who is living the experience.” It’s a specialty also “trained to be comfortable with [prescribing] the stronger stuff: morphine, hydromorphone, fentanyl.” As the fellow learns these skills, an assessment of how her specialty serves the dying patient and her colleagues becomes clear:

The trouble that the other doctors have is not a lack of gentleness. Well, not only that. More often what they cannot do is tell the truth. They pack death up in so much misdirection, talk about the success or failure rate of this or that procedure or treatment, when the truth is the patient will be dead soon no matter what we come up with to do in the interim. That’s the part they need a specialist to say.

 We also get glimpses of the narrator’s personal life: her relationship with her husband Eli, the dark ground-floor apartment they rent, the chess games she plays with her young niece Sarah, who her brother has left with them. We learn about the death of her father. Throughout the novel, the narrator seeks ways to withstand suffering—the global and local, present and past—in her daily existence.

Anna DeForest (they/their) is the author of the novels A History of Present Illness and Our Long Marvelous Dying, and a palliative care physician in New York City.

Photo by Stephen Douglas

Our Long Marvelous Dying is DeForest’s second novel and in some ways narratively follows A History of Present Illness, published in 2022, which challenged the lore of medical education through the story of a student managing her own personal trauma and the wider trauma of American healthcare. Reviews of DeForest’s first novel linked the writer, who works as a palliative care physician at Memorial Sloan Kettering Cancer Center in New York City, to the narrator—and the same might apply to Our Long Marvelous Dying, as many moments seem pulled from the firsthand experience of a physician versed in hospice and palliative care.

In many of the novel’s settings, bereavement surrounds the narrator and often consumes her. But the grief that grounds the story and proves most unsettling for the narrator stems from the death of her absent and unkind father. DeForest structures the story to reflect the narrator’s apprehension towards him. We see him in pieces between scenes in the hospital, and can’t put him together as a whole until the very end. In managing the arrangements for his death, the narrator takes us through their fraught relationship. His favorite story to tell her romantic partners when meeting them for the first time is how whenever she cried as an infant, he said “I never liked you from the beginning.” But the cruelty of his abandonment is in its persistence—he is a “latent monster,” a “ghost” from whom she never stops craving acknowledgement.

Beyond her family, the narrator guides us through additional layers of grief in a way that we never stay long enough in one place to take up the devastation. The world offers constant tragedy—floods, destruction of coral reefs, extinction of thousands of species. And every day the COVID-19 pandemic rages. The reader hears about the refrigerated trucks lining New York City blocks, but what the reader sees in specific detail are the causalities for healthcare workers: their loneliness and coping mechanisms of alcohol use, disordered eating and SSRIs for suicidal ideation. During rounds, for example, an attending physician recounts the peak of the pandemic and says absently, “I am on an SSRI.” Meanwhile, the narrator notices the spring air coming through the window in his office that has “no bars, no screen. Fourteen floors up, with a view of the Empire State Building.” There is an omnipresent threat of self-harm, if not from one tragedy, then from the weight of so many others. 

But Our Long Marvelous Dying is not a trauma dump. It confronts the obvious truths we train ourselves to overlook: the truth of death in a hospital, the truth of our own progression to death. It forces the question of “what is the purpose of living?” and does not give a satisfying answer. In this way, the novel’s title does not allude to the hidden deaths in the hospice wings, it alludes to us. Without despair, the narrator states “that all of us will die…that all of us are dead already.” The narrator acts as a palliative-care physician for us all, interpreting the jargon and euphemisms that drown the simple truth of daily tragedy.  The sugar coating has dissolved, and she wants to communicate that “no one is coming to comfort you” and “nothing will help.”

 One of the most provocative aspects of DeForest’s work is their ability to situate the reader in the day-to-day clinical world. The narrator normalizes death, dying and the grim collapse of human bodies that happens, not because of dispassion, but because of routine. While contributing to the book’s undercurrent of grief, the hospice unit provides meaning on a quotidian basis. On a phone call, in response to a mother’s dismay that her daughter may die before they arrive, the narrator reflects: “of course she can and does die alone.” In another situation, she reflects that an aging actress “dies the same as anyone.” These are tragedies that are contained, expected and managed. 

Despite submission to muted sorrow, the narrator still attempts to manage her trauma. The palliative-care fellowship itself, in the view of its program director, draws those with personal layers of grief in addition to their professional interest. For the narrator, her work keeps the despair at bay and allows her to reflect on the minutiae of existence—for example, describing her underground commute as “the long stretch of track between where I live and everything that matters.” In revolving her life around the care of others, she does not have to generate her own will to continue living.

She also tries to endure by tempering her connections, especially to her husband Eli, a “well-adjusted” and handsome chaplain with a network of friends who adore him. The constant in their marriage is the restrained threat of its end, from “red flags” or laments that “it isn’t working.” This sense of detachment also manifests with her niece Sarah, who she describes as her “temporary daughter” while Sarah’s father is unable to care for her due to his substance use. We learn that an intergenerational dearth of attention and love has conditioned the narrator to the security of pain rather than love; the cycle of abuse contributes to her decision not to have children. The place where she seeks connection is a monastery out of the city, where she arrives and departs anonymous to her peers.  

While there is no neat resolution, the protagonist steadily approaches the grief that eludes her—the death of her father. We see this through the lengthening of the scenes themselves. Initially, we learn about her father in brief moments between scenes of her palliative-care fellowship; by the end, we are allowed to linger as she sorts through his belongings. For a person who asks uncomfortable questions (Are you happy?) and speaks revolutionary words in a hospital (death and dying), the narrator takes her time to confront his death. She asks a rabbi at the hospital what to do after death about the bad acts her father committed in his life. Just as she can cut through medical euphemisms and jargon, he cuts through her question: “The weight you feel, he says, is not a need to forgive anyone. Just call it grief. Call it trauma.”

In Our Long Marvelous Dying, DeForest challenges our discomfort with death and instead leads with loss and our search for meaning within it.—Margo Peyton

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Margo A. Peyton is a resident physician in neurology at Massachusetts General Hospital and Brigham and Women's Hospital. Prior to medical school at Johns Hopkins, she worked in film and television story development for DreamWorks Animation. Her essays and book reviews have appeared in The New England Journal of Medicine, JAMA and the Boston Society of Neurology, Neurosurgery, and Psychiatry.

Interview with poet Chris Martin about Multiverse, a new poetry series from Milkweed

Earlier this year, Milkweed Editions, an independent non-profit publisher based in Minneapolis, launched Multiverse, a literary series devoted to different ways of languaging, curated by neurodivergent poet Chris Martin, whose new book May Tomorrow Be Awake: On Poetry, Autism, and Our Neurodiverse Future just came out from Harper One. The first book in the Multiverse series was Hannah Emerson’s debut poetry collection The Kissing of Kissing, which fulfills a key tenet of the imprint: To showcase editorial voices that emerge “from the practices and creativity of neurodivergent, autistic, neuroqueer, mad, nonspeaking and disabled cultures.” Creating this kind of series is a transformative act that enriches, enhances and transforms our current literary landscape. I interviewed Chris Martin about how Multiverse will open up a chorus of voices and sensibilities that our medical humanities community needs to hear and witness. 

Thank you for getting together to talk about Milkweed’s Multiverse series that explores different ways of languaging. Could you explain that term and also speak about how the clinical community can learn from this core concept of your series.

‘Languaging’ is a term I got from Adam Wolfond, who is a non-speaking autistic writer from Toronto; his book “The Wanting Way” will be the series’ second title coming out in the fall. Adam likes to emphasize movement, emphasize how something is rather than what it is. One of Multiverse’s intentions is to disrupt the monolithic ways of seeing people and conditions and to bring out the wild variety of forms that language and autism and neurodivergence and disability take. When we’re speaking of non-speaking autistic writers, there is a tendency to think of them as ‘exceptions’ and have one stand in for everybody, whether it’s Tito Rajarshi Mukhopadhyay or a book like “The Reason I Jump” by Naoki Higashida. But when one or two people stand in for everyone else, we forget there’s this amazing amount of variety. By giving a range of neurodivergent writers, we give them a platform to express themselves exactly how they express themselves and show how much they diverge from each other. [It’s limiting to] think we sum up a condition or way of life with one particular set of ideas.

The Kissing of Kissing by Hannah Emerson is the first in Milkweed’s Multiverse series, curated by Chris Martin.

That’s one of the challenges for the clinical community: Learning to differentiate and do a ‘close reading’ of each patient provides a chance for clinicians to be creative and open, rather than relying just on symptoms, tests, data. Most clinicians are taught to be so by the book and what feels embedded in Multiverse as a concept, and in Hannah Emerson’s poetic universe as well, is learning to be open to a different language or point of view. The question is if clinicians can adapt to that discipline of puzzling out a new language in the hospital room or ER—poetry teaches patience and openness to a different language but will that skill be transferable when confronted by a patient’s weird blood count or cough that won’t go away?

When you say ‘by the book,’ it’s such a powerful phrase, because it is by the book! If Multiverse could be by the book writ large as a resource for different voices, that is amazing. The more nonspeaking writers I engage with the more my understanding of autism grows, and the more my understanding of myself grows, learning about what it means to be me, a human animal. The difficulty you point to is really interesting, and we often misapprehend where that difficulty arises. Primarily, it is that the language isn’t transactional, it doesn’t follow neuro-normative patterns that allow it to be instantly consumed and that arises in medicine too. We’re living in a capitalist ableist society, a neuro-normative society trying to get everyone on a conveyor belt where they will be, inevitably, crushed, at least the way I see it. But who’s to say we have to move at that pace? There are other ways to communicate, other ways to be together, and if those ways feel challenging at first, it’s because they’re pushing in the opposite direction of the conveyor belt. We have to work hard to step away and to take things on their own terms rather than follow preconceived ways of how language should work or how people should work and I think there couldn’t be anything more important than that.

One concept taught in Narrative Medicine at Columbia University by Dr. Rita Charon, is co-constructing a narrative. Along with close reading and understanding tone of voice and point of view, there’s also how the self and the other construct a shared story in the clinical encounter. There’s the doctor’s point of view and the patient’s – and the idea of coming together to create this story involves a ‘shared power’ – not just, ‘I’m the doctor, the authority figure, and I hold the power here.’ How does your series speak to this concept?

One of the things we think about at Multiverse is “can we foster and cultivate consensual futures together?” By that, we’re going back to the roots of that word to think about how we feel together in the world that emerges between us. We’re also interested in consent—a consent that is a constant process, to involve the writer on their own terms or at least in a place where we can ‘find’ each other instead of making them answer things in a neurotypical way. Like with Adam: His visual acuity doesn’t allow him to fix the words on the screen—they swim on it—so when it came to making line breaks we had to think of the accommodations to allow Adam to do this. From the beginning Adam totally questioned the authority that comes with authorship –so he also commissioned about a dozen poets, writers and thinkers to participate in this experiment of line breaking. Then he figured out which ones he preferred – his own or theirs. Also, he doesn’t see them as breaks but as windings like a river – so he would have writers unwind the poems, then rewind them and bring their own sensitivity. Other writers liked the idea and adopted the practice of commissioning others (not me, I love doing line breaks, it’s one of my favorite things). But what started out as an accommodation became this methodology that others did too.

“Unwinding” as a way of disrupting in a creative way – it’s a great metaphor that clinicians and caregivers can use when feeling out of control of a situation. The idea of looking at a clinical encounter and unwinding it in order to make the breaks (or rewind the circumstances) is useful.

May Tomorrow Be Awake: On Poetry, Autism, and Our Neurodiverse Future by Chris Martin was just published by Harper One.

It’s so important to ask ourselves what we’re trying to fix, because of the non-normative linguistic approaches these writers have. In Hannah’s book, there’s a lot of repetition, there’s no punctuation, there’s a lot of anaphora, starting lines with the same words, ending lines with the same word, those are literary devices used by many people, but I think Hannah does it in a particular way that it takes one awhile to figure out how the poems move, and once you do, it becomes really seamless. There is a way of reteaching yourself how to read and for each of these books, I hope that’s the experience on some level, the sense of ‘Oh I have to relearn how to read because I’m encountering something so true to its own patterns that I have to listen very closely and be humble and figure out how this is moving.’

That’s the experience a doctor has when meeting a new patient. That level of engagement is what NM tries to teach so clinicians feel comfortable instead of bothered by newness. Speaking of new, let’s focus on The Kissing of Kissing. How should someone new to poetry and to Hannah Emerson’s work engage with this new collection? 

Read it out loud. One of the amazing paradoxes of Hannah’s work is it’s so incredibly, entrancingly lyrical it begs to be read aloud. When it’s read aloud, you’re experiencing it and that’s the best possible thing to do.  Also, trust that the book will meet you in the middle. If you spend a little time with it you’ll find yourself being addressed in really direct ways. That’s what I love about Hannah’s book: while on some level it’s difficult, there’s also this incredible connectivity and directness toward the reader and those who do connect will get hit with a lightning bolt.

In an interview you did with Hannah, she voices the following remarkable passage:

“Nothing is the stillness that is the moment that is now yes yes. Please try to go to the place that is in all of our dark places that we try to run away from every moment of our great great great beautiful lives yes yes. Please try to understand that these thoughts go directly to the place that we need to go to deconstruct the freedom that we think is the way to a comfortable life that has brought us to the brink of extinction yes yes.”

Talk about how readers, especially clinicians, can be open to the ‘nothing’ Hannah speaks of when many have been trained in suppositions about normalcy.

For one thing, resist that quick grasping or groping after categories and the way we want to fill the space quickly with things we think are productive but may instead cover up and smother an authentic connection with someone that would lead to authentically learning who they are. I was just reading “How to Do Nothing,” a remarkable book by Jenny Odell who talks about the philosopher Martin Buber, and his idea of the I-it relationship – one of instrumentality where you’re treating someone like an it so you can get what you want when moving through your own experience, and I-thou relationships, where you truly behold someone on an equal plane, and are ready to learn from who they are. I feel like that’s the space of the ‘nothing’ and one thing Hannah is saying is there’s a kind of plane where we can meet each without those preconceptions and humbly slowly carefully learn about each other and what arises there will have an authenticity and realness to it that will be nourishing and hopefully, in clinical terms, will be incredibly useful.

Why is poetry such a potent tool to disrupt our ways of thinking?

One of the things I’ve tried to figure out is what is this incredible reciprocity between autism and poetry. Hannah writes a lot about freedom – it’s not a traditional idea of freedom, but rather it’s that “dreaming kissing life.” One of the things that carries that freedom is, I would almost say, a love—the pattern of love. For me, every poem is a love poem, no matter what it’s about. The patterns you infuse that poem with communicate a number of things. One is that the author cares about how the poem meets you; in prose, there are a lot of patterns but a writer is often so hemmed in by grammar, right? It’s sometimes hard to feel the care in the way language is shaped, whereas with a poem there are so many strategic choices being made you really feel like someone has made something for you—there’s such an intimacy to that. And the word poesis, the origin of poem, is ‘to build or compose, to make.’

In The Kissing of Kissing, there’s such an intimacy in the way a poem meets you, greets you, kisses you, that’s hard to find in other places. But it’s also a place where you can take off everything that’s extraneous, you can drop all the standardizations or make all your own choices— whether it’s punctuation, capitalization, the shape of the poem, there are just so many potential choices you can make. It’s analogous to moving through the world and something I’ve had to learn—how do I unmask as I move through the world as a neurodivergent person, a disabled person, how do I allow who I really am to meet other people and where do I find spaces that are safe enough. A poem I feel takes all those aspirations of unmasking and meeting people in direct and consensual spaces, and it combines with our love of song.

You’ll find that all through Hannah’s work, and one of the things clinicians might be interested in is that Hannah is echolalic – she’s nonspeaking but she’s often always singing. Song, I believe, is where language originates, language began as song, and then coalesced in other forms associated with story and then written language. But poetry returns us to the original impulse of song, which is something we use to celebrate and come together in communities, something that enjoins us.—Donna Bulseco

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Donna Bulseco, MA, MS, is a graduate of the Narrative Medicine program at Columbia University. After getting her BA at UCLA in creative writing and American poetry, the L.A. native studied English literature at Brown University for a Master's degree, then moved to New York City. She has been an editor and journalist for the past 25 years at publications such as the Wall Street Journal, Women's Wear Daily, W, Self and InStyle, and has written articles for Health, More and The New York Times. She is editor-in-chief of Intima: A Journal of Narrative Medicine, a literary journal recognized as a leader in the medical humanities world.