In The Occasional Human Sacrifice: Medical Experimentation and the Price of Saying No (W.W. Norton, 2024), bioethicist Carl Elliot begins his ethical exploration into whistleblowing in medical practice and research, surprisingly, with a personal account. Working within a discipline that has historically sought to separate subjective insights from detached analyses of putatively objective principles and systems of thought, Elliot details his experiences, calling attention to a psychiatric research study at his home institution that appeared to contribute to the suicide of one its participants. He recounts the painstaking process of bringing the injustice to light and holding his institution to account, only to find himself progressively ostracized, denigrated and ultimately thoroughly disillusioned.
Read moreReckoning: Ten Seasons in Fire Island Pines by Miles Cigolle
In Reckoning: Ten Seasons in Fire Island Pines (Sunstone Press), the reader follows an extended period in the life of a gay man, Miles Cigolle. The book, written and narrated by Cigolle as its central character, covers the years from 1988 to 2000. Reckoning is thus an individual, personal story, but one that also reveals a critical moment of social history, highlighting how the supportive communal structure that was engaged in the early responses to AIDS had many roots in a place synonymous with sybaritic hedonism.
Read moreThe Quiet Room: A Timeless Memoir Unpacking Schizophrenia by Lori Schiller and Amanda Bennett
In this review, Alyssa Sales outlines the author’s experience with schizophrenia as seen from multiple perspectives.
Read moreSeeing the Humanity in Himself: A Review of “The Country of the Blind: A Memoir at the End of Sight” by Andrew Leland
In “The Country of the Blind: A Memoir at the End of Sight” (Penguin Press, 2023), Andrew Leland digs into what people mean when they use the word “blind,” as there are medical definitions, in addition to legal uses of the term, as well as social constructs and expectations. The medical definition is complicated, as only 15% of people who are blind actually have no vision at all. Instead, they have some sort of substantial hindrance to full sight, but those issues vary wildly. In fact, most of the people in the book are more like Leland, people with some partial sight, even if that is nothing more than distinguishing light and dark patches of the world.
Read moreZig-Zag Boy: A Memoir of Madness and Motherhood by Tanya Frank
Tanya Frank, a Londoner living in Los Angeles, wrote an essay in The New York Times titled “Unmoored by a Psychotic Break” about her son’s diagnosis with schizoaffective disorder in 2009. Her book about the next decade of her and her son’s life, Zig-Zag Boy: A Memoir of Madness and Motherhood (W.W. Norton), chronicles how psychiatric illness can redefine the relationships in and beyond a family.
Read moreBeautiful Trauma: An Explosion, An Obsession and A New Lease on Life by Rebeca Fogg
Rebecca Fogg notes that there are innumerable responses to recovery, and she wisely avoids turning this story into a “how-to-survive-a-trauma” manual. This is no misery memoir, one that concentrates on the vulnerability and suffering of the survivor. She does describe the intense pain of the injury, however, in the objective, almost detached manner required of a scientist. She has a relationship with her hand as an object of concentrated study.
Read moreUncaring: How The Culture of Medicine Kills Doctors and Patients by Robert Pearl
In Uncaring: How the Culture of Medicine Kills Doctors & Patients (published by Public Affairs), Dr. Robert Pearl, a Stanford professor, plastic surgeon, and former chief operating officer of Kaiser Permanente, writes a well-documented panoramic narrative and insider view that demystifies the complicated healthcare system. His book offers a disturbing look at healthcare system that has lost its purpose. Pearl relates inefficiencies and slow changes, as patient centric views held by physicians and systems that have failed to adapt, both to cultural and individual principles, held so dearly for decades.
Read moreSome Kind of Happiness by Claire Legrand
In her 2017 YA novel Some Kind of Happiness, Claire Legrand paints a poignant picture of mental illness and the difficulties of navigating family relationships. It is a fictional account of teenager Finley Hart as she spends a summer with grandparents and cousins she has never met while her parents resolve their relationship issues. Interspersed in the chapters is a magical story of a place called “Everwood,” a fantasy realm that serves as a coping mechanism for the young girl, who uses it to journey through dangers, meeting friends and foes both without and within. Fantasy and reality bleed into each other as Finley struggles with what she sees as “a darkness” within her, a darkness that threatens to destroy the Everwood.
Some Kind of Happiness is an insightful tool that can be used to teach teenage and adult audiences the difficulty in confronting and naming mental illness in one's life. The book starts off with Finley being dropped off for the summer at her grandparents' house. For reasons not yet known Finley’s father is estranged from his parents, so until this point Finley has never met them or her aunts and uncles. Her parents need the summer alone to “work on things” and it is implied they are approaching divorce but not explicitly stated.
This refusal to give a name to problems is a recurring theme that’s true of the teenagers and adults alike in this insightful narrative. Like Finley many teenagers may be unable or unwilling to articulate what they are feeling. They are suddenly dealing with complex emotions and adult situations they’ve never encountered before. Finley’s journey through this symbolic forest of emotional struggles—and how much her viewpoint as a teenager differs from the adults around her—is a reminder of the confusion adolescents experience and the real benefits that come from confronting and giving voice to their struggles.
While the story is geared towards a Young Adult audience, Legrand’s skillful and engaging prose creates a useful depiction of working through these emotions and figuring out what they mean. It also helps to combat the stigma of mental illness, normalizing it as a part of life. Adult readers can glean a lot of insights as well. I found myself reflecting on how I try to recognize struggles in children and youth around in my life, and how I approach difficult and sensitive topics with them.
As the story progresses Finley tells her cousins about the Everwood and the children play fantasy games in the nearby forest together. Her cousins are knights, squires and princesses, and Finley plays the orphan turned queen. Against the warnings of their grandparents, they make friends with the neighbor boys and create a world full of lore and magic. The tone and story of the book made me think of Bridge to Terabithia by Katherine Peterson.
Though she plays with her cousins the Everwood isn’t a game to Finley; it is something more, a place where she escapes from her problems. One day the young girl realizes the Everwood is changing and decaying and as she investigates, she meets a snake. The snake warns that something within her is destroying the Everwood and helps extract a portion of oily darkness from her. Unfortunately, the snake isn't powerful enough to remove all of the darkness, but warns that it must be removed to save the Everwood, as seen in this passage:
“Whatever we carry within our hearts, the Everwood’s power makes it real. And soon what you carry will destroy not only you but everything you touch. The Everwood is not as strong as it once was; your darkness will bring out its own. To save the forest you must face this thing inside you.”The orphan girl held back tears of shame. Her great secret, the one she had worked so hard to conceal, lodged in her heart, “But how?”
“First you must give it a name,” said the snake. “Naming a thing takes away some of its power and gives it to you instead.”
But Finley refuses, finding it too hard. This reminded me a lot of when a patient I worked with told me that being diagnosed with depression was almost as hard as suffering from it. To have their sadness given a name made it real and was painful, in part, because they couldn’t hide from it anymore. This is what Finley feels, and later, when she is confronted with a fox, she still refuses to name the darkness. It is unclear whether Finley is just afraid to name her condition and admit what is going on, or if she truly doesn’t understand what is happening and is unable to name it.
Legrand uses Finley’s internal dialog to adeptly describe the struggles of mental illness. Her young protagonist often has “blue days” and “episodes” that seem to be panic attacks. Finley, who feels incredible guilt about these attacks, recognizes her life is better than others and feels she has no reason to feel the way she does. When her cousins and friends discover a burned-down house with three graves in the front, they name it “Bone House” and learn about a young family that died in a fire. As the revelation comes to light, Finley begins to have a panic attack:
“...not even fresh air can get rid of this fear living like bugs underneath my skin.
This fear that I have no reason to feel.
There is no reason for the heaviness I can feel pressing down on me. Like when you step outside before a storm and the air feels heavy and damp, like you’re drinking it instead of breathing.
Like that, but worse.
It seems wrong to feel these things while standing in front of this poor, broken Bone House.
I ought to be able to get rid of these feelings—right?
Shouldn’t I be able to live in my beautiful, clean house (which is not burned) with my family (who are still alive) and be happy about it?
I ought to be able to get rid of these feelings.”
Eventually, as she explores the Everwood and receives help from her parents and family, Finley is able to name her darkness when she goes to see a therapist:
“I breathe in. I breath out.
(Its ok, Finley.)
(Let her see.)
Dad squeezes my hand.
“I think I have depression.” I hesitate, “And anxiety, too.”
When I say it, the words float away from me and leave nothing behind.
They are only words. They are only part of me, and I am still here.
I do not need to be afraid of them.”
With an understanding of what is going on within herself and a realization that things aren’t as perfect as they appear on the outside, Finley is able to accept who she is, and as she does the darkness of the Everwood recedes. Things are right again and she becomes more than “the orphan,” she becomes Queen of the Everwood.
I was impressed with the honest way mental illness was portrayed. I’ve read many clinical books that describe mental illness, but Claire Legrand was able to portray it in an emotional way that strikes one's heart. Some Kind of Happiness does what Finley struggles to do: It adeptly names and beautifully describes the struggles of depression and anxiety in a way that connects with readers. While Legrand doesn’t have an academic background in mental health, she has spoken on the struggles of living with mental illness. Her personal experiences shine through in the way she describes these struggles, making it an insightful one for those who are confronting their own difficult emotional landscape. Using both real world examples and allegory Some Kind of Happiness is a useful story for younger readers as well as clinicians in understanding mental illness. It gives voice to those who feel like outsiders in their own families or feel inadequate compared to everyone around them. It teaches us we don’t have to be afraid of what's inside us. We can face it, and when we do, we don’t need to face it alone. —M.T. Bennett
M.T. Bennett is a student at Trinity School of Medicine. He enjoys writing and spending time with his wife and two sons. Bennett is the author of “Dark and Bright: Poetry and Prose.” His writing has appeared in various publications from the Harvard Medical Student Review, to the Journal of Supernatural Studies, World Medical & Health Policy, Graphic Medicine, HEAL, America Media and MedPage Today.
Second-Generation Healing: The Holocaust poetry of Yerra Sugarman in "Aunt Bird" by Robert C. Abrams
The subject of Aunt Bird, a collection of poems by Yerra Sugarman, is the last year of the life of her aunt in the Kraków ghetto during Nazi occupation of Poland (Four Way Books, 2022). The book is a collection of impassioned poems about the lost hopes of a spirited, once-vital young adult.
Read moreThe Song of Our Scars: The Untold Story of Pain by Haider Warraich
Almost everything we know about pain and how to treat it is wrong, Haider Warraich says in his insightful book The Song of Our Scars: The Untold Story of Pain, published earlier this year by Basic Books. The physician and assistant professor at Harvard Medical School claims that there are dire misunderstandings between patients who feel pain, the clinicians who address it, and the researchers who study it. Worst of all, he says, pain has transformed from a symptom into a disease.
One in five American adults—an estimated sixty-six million in total—experience chronic pain, resulting in billions of dollars in direct medical costs and lost productivity. Lower back pain is the leading cause of disability in the United States, followed by migraine headaches, neck pain and conditions like osteo and rheumatoid arthritis. And Americans are most likely to use opioids to help alleviate their pain. Yet, as Warraich points out, opioids provide little to no benefit for chronic non-cancer pain, and can even make it worse.
Pain’s storied complexity is multifaceted and multilayered. Its treatment, in Warraich’s view, requires empathic holistic care that considers how pain is racialized, gendered and personal. Pain is subjective. You can have pain without suffering. There is no single dedicated pain center in the brain. The pain of Black people remains both under-recognized and under-treated. Women are more likely to feel pain, but their pain is also more likely to be dismissed. Simply assessing pain on a numeric scale doubles the risk of opioid overdoses in hospital. And exercise is a vital part of any multidisciplinary approach to managing chronic pain.
Warraich himself has chronic back pain due to a sports injury that happened many years ago when he was a medical student in Pakistan—around the time when he felt confirmed in his vocation to be a doctor. Just when he felt like he had fallen in love with medicine, he broke his back.
Now an insightful, wounded healer, Warraich draws from his own experience of how disruptive chronic pain can be—how it “disrupts the way a person moves through their life, the narrative they define themselves by, the arc of their stories.”
The Song of Our Scars is filled with research findings, clinical vignettes, historical details and sociopolitical commentary. Yet the story Warraich tells is so broad and at times surprisingly sequenced—jumping from the mythological Greek world, to the history of opium, to the American Civil War—that it can sound like listening to the radio while scanning the channels, catching snippets of newscasts in search of a good song. We as readers want to hear more of Warraich’s own personal self-reflections, which would help focus his narrative by giving voice to his song, and deepen its impact on readers, his listeners.
Perhaps most helpful is Warraich’s concern for the origins of the opioid addiction crisis in America. The story of the opioid crisis continues to unfold in the United States, and recently came into the headlines in the documentary “All the Beauty and the Bloodshed,”directed by award-winning director Laura Poitras about artist Nan Goldin’s life and chronicles her addiction and activism that led to major museums such as the National Portrait Gallery in Washington, DC, the Guggenheim, the Tate and others to stop taking donations from the Sackler family and removing the Sackler name from the walls of their institutions. The documentary won the prestigious Golden Lion at the Venice Film Festival in September.
In The Song of Our Scars, Warraich highlights how Cicely Saunders’s revolutionary approach to pain management in hospice care was “hijacked” into a business strategy by the pharmaceutical industry, whose goal, he says, “was to take Saunders’s approach toward total pain experienced by people at the end of life and apply it to people in every phase of life, treating routine medical conditions as if they were terminal illnesses.” Saunders, who started her clinical practice as a nurse and became a doctor, is credited with founding the first modern hospice and establishing the discipline and the culture of palliative care in the late 1950s.
In terms of narrative care, Warraich brings to mind, but does not reference, other prominent physicians and scholars who describe and advocate also for such empathic patient-centered care, including Rita Charon, Victoria Sweet, Arthur Frank and William Randall.
What are the songs of our scars? What type, form and shape do they take? There are love songs, ballads, laments and anthems, to name an obvious few. How do they help us? Do they capture our hearts and move our spirits? Warraich hopes so. As patients tell us their tales of pain, he knows how important it is to listen to them. And he wants healthcare providers to learn how to listen more fully, deeply and more compassionately in clinical practice. Empathy is what makes a good doctor, he says—empathy and kindness.
“As we look to the future and take stock of all that we know about chronic pain,” he says, “we find that the most promising treatment approaches don’t involve any chemical inebriation or procedural manipulation. They involve one human being talking to another, helping them realize that the path to relief was within them all along.”—Robert Mundle
Robert Mundle is a graduate of Yale Divinity School and a palliative care chaplain in Kingston, Ontario. He is the author of How to Be an Even Better Listener: A Practical Guide for Hospice and Palliative Care Volunteers (JKP 2018).
A History of Present Illness by Anna DeForest
The narrator of A History of Present Illness is a young doctor going through the daily initiation of learning her vocation. In the story, the narrator subverts the fabled tradition of medical education through her position as an outsider on the inside. We discover her history in increments: She grew up in an unstable home with a mother who drank too much. In her adolescence, she walks in to see her pregnant mother sitting on the kitchen floor shooting staples into her arm. Financial instability is a way of life, as is self-injury: The narrator cuts lines into the creases of her hands, to manage the suffering and hide her scars.
Read moreOrdinary Deaths: Stories From Memory by Samuel LeBaron
Psychologist Samuel LeBaron’s book, “Ordinary Deaths” was recently published by the University of Alberta Press and in it, he examines the following truth without the drama often accompanying such writing: Death is not a heroic journey, a metaphorical “war” against fatal illness. It is, as the title states, ordinary.
Read moreIntimacies, Received: Poetry by Taneum Bambrick
Bravery, to me, is stepping forward to confront your fears and discomforts, despite the emotions holding you back. After reading Intimacies, Received, Taneum Bambrick’s moving collection of poetry, brave is the word that most readily describes the taut, sometimes treacherous path the poet takes to reclaim her sense of self and connection to her body after a traumatic event.
Read moreMedSpeak Illuminated: The Art and Practice of Medical Illustration by François I. Luks
MedSpeak Illuminated: The Art and Practice of Medical Illustration by François I. Luks is a remarkable volume that expertly brings together humanities and science.
Read moreQ & A about Neurocinema—The Sequel! by Eelco Wijdicks
When neurointensivist Dr. Eelco Wijdicks published the original Neurocinema: When Film Meets Neurology in 2014, his collection of film essays summarizing the portrayal of major neurologic syndromes and clinical signs in cinema served to underscore the field’s existence by being its premier textbook. Therein the medically-inclined movie buff or the film-frenzied clinician could explore medicine as it appeared on the big screen and better understand what the effects of medicine on film have played in our cultural milieu over time.
Read moreThe Kissing of Kissing: Poems by Hannah Emerson
In the book—the first in Milkweed’s Multiverse literary series curated by neurodivergent poet Chris Martin—Hannah Emerson ushers us into her evocative mental universe with its unique rhythms giving voice to herself as a nonspeaking autistic artist and poet.
Read moreInterview 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.
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.
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
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.
In Love: A Memoir of Love and Loss by Amy Bloom
Amy Bloom’s moving memoir, In Love: A Memoir of Love and Loss, is a love story about an idyllic marriage shattered when Bloom’s 60-year-old husband Brian’s forgetfulness takes over their lives. His personality changes, and he becomes distant and indifferent. “Names disappearing, repetition, information turned upside down, appointments and medications scrambled. Suddenly it seemed we argued endlessly about everything,” Bloom laments.
Read moreWords We Cannot Say by Sita Romero
Sita Romero’s debut novel Words We Cannot Say offers a true and unflinching look at pregnancy and hardship. The story is told through the lives of three different women as they navigate the struggles of friendship, motherhood, pregnancy and loss. Though the women seem to be entirely different, their lives connect in organic and often overlooked ways.
Read moreSmile: The Story of a Face by Sarah Ruhl
In her memoir Smile: The Story of a Face (Simon & Schuster), Sarah Ruhl tells the story of her ten-year struggle with Bell’s Palsy. Ruhl was (and is) a successful playwright when she and her husband discover they are having twins. That news, coupled with the fact they already have a daughter, leads Ruhl to worry she will struggle to write again because of the time and energy needed to balance a growing family and the high-stakes professional demands and drama accompanying her profession. That concern becomes even more complicated when she is diagnosed with cholestasis of the liver, where bile seeps into the bloodstream causing itchiness, but also possibly leading to the death of the children.
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