The 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.

Haider Warraich is a physician, author and researcher at the VA Boston Healthcare System, Brigham and Women’s Hospital and Harvard Medical School. He has published more than 140 research papers including in the NEJM, JAMA and BMJ. He frequently writes for the New York Times and Washington Post, and is the author of the books Modern Death, State of the Heart and the just published The Song of Our Scars – The Untold Story of Pain (Basic Books).@haiderwarraich

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

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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).

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.

Show Me Where it Hurts: Living With Invisible Illness by Kylie Maslen

Kylie Maslen’s critically acclaimed non-fiction essay “I’m Trying to Tell You I’m Not Okay “ took a new form on shelves worldwide in 2020: The essay became the first chapter of Maslen’s experimental book Show Me Where it Hurts: Living With Invisible Illness. Like her essay, the book has met with success: it was shortlisted for Non-Fiction in the 2021 Victorian Premier’s Literary Awards and named among Guardian Australia’s 20 best Australian Books in 2020.

Author Kylie Maslen . Learn more about her work at kyliemaslen.com
Photo by Lauren Connolly

As Maslen herself says, her book is a part of a growing trend of Australian “sick lit” – literature that deals with life with chronic illness. “Living with invisible illness poses a unique challenge,” Maslen explained we spoke via Zoom, “in that you’re constantly having to fight for attention because things are not self-evident.” Her collection of essays primarily focuses on endometriosis and bipolar disorder and brings to light conditions that are not well known or understood but are quite common. Endometriosis alone affects 1 in 10 women and its issues create complications we often choose to dismiss or ignore.

The topic of the book might sound a bit heavy – and at times it is – but Maslen managed to create a Millennial masterpiece. It is many things: confessional literature, a review of pop culture and a fight for disability awareness and representation all at once. A source of both tears and laughter, the book comes with an important message. As a part of pop culture itself, it manages to entertain nevertheless.

The nature of the book is already illustrated in the opening essay, where Maslen movingly writes about endometriosis, suicidal ideation and memes all in one text, as the following illustrates:

The very nature of chronic illness lends itself to isolation. Time spent at home resting, time spent in waiting rooms, time spent in hospital, time spent recovering.
Things I want to say:
I don’t know how long I can keep doing this.
I can’t do anything nice for myself because I spend so much money on staying alive.
Instead I post a meme of SpongeBob walking into a room with an exaggerated swagger. The caption reads ‘walking into your doctor’s office’.
The receptionist at my GP’s rooms says, ‘Take a seat, Kylie’ when I walk in the door. The frequency of my visits spares me the time it takes for him to look me up on the system and confirm my appointment; he no longer asks, ‘Is this still your current address?’ before letting me sit down. I’m grateful that he can see my exhaustion and helps me in this small but not insignificant way, but I’m saddened that my life looks like this at such a young age.

A key theme in chronic-illness memes is conversations with ‘normies’ (those who are not chronically ill or disabled). Specifically, she chronicles their refusal to listen, an inability to empathize with others’ pain or the quickness to dispense unsolicited advice about symptoms and illnesses of which they have no lived experience.

Things people say:
‘You don’t look sick.’
‘You look much better than last time I saw you.’
‘It’s good to see you with some colour back in your face at least.’
Many of us with chronic illness are often housebound. Unable to socialize with family, friends or colleagues we go online to interact with others. We are also searching for people who understand.
Peer support through social media offers a source of experiential knowledge about illness. It gives us a way to normalize pain and a life lived with chronic illness. That can take the form of sharing stories and asking questions, but often we communicate through chronic-illness memes, which are a simple visual means of conveying complicated emotions and frustrations, as well as a way to add humour to our heavy conversation. Using memes—images or videos that are already widely shared – with context tailored to illness communities allows those of us who feel socially isolated by circumstances beyond our control to connect with the broader zeitgeist.

Maslen connects with readers, especially those of her own generation, with her daring honesty. The author discusses sex, loneliness, mental health struggles and the burden of chronic pain as well as pop icons, her favorite TV shows, books and movies. In one essay, the writing is raw and dark, disclosing extremely intimate episodes of alcohol and prescription drug abuse as well as Tinder dates gone wrong due to endometriosis; another essay is a playlist, where each song serves as a tool to dig deeper into her own headspace. We are presented with an analysis of SpongeBob SquarePants and an ode to Beyoncé on the one hand, and on the other we witness Maslen thoughtfully posing for Instagram, choosing what to share and how, and comparing her life to the curated online lives of those who are well. It is this combination of different approaches to the same topic that enable the book to be a refreshingly accurate description of an entire life, warts and all, of a person just like any other Millennial—having to deal with the burden of chronic illnesses on top of it all.

This aspect of her narrative is what made it stand out from the rest of “sick lit” for me personally. Not much younger than Maslen, I, too, suffer from endometriosis. I’m often bedbound, scrolling through memes about menstruation and ‘endo life,’ laughing out loud and sharing the best ones with my online support groups and trying to communicate my condition with others through Instagram stories. I am yet to find a book on the subject that so fully resembles my own life. I can say with no hesitation that Maslen managed to do what all illness narratives aim to do – she wrote a book that connects with those who experience similar things on a very deep level. This makes the reader feel validated and less alone. It is, however, written in a welcoming way should it fall in the hands of ‘normies’ who are willing to learn more about what it is people like us experience.

There is a running joke in the endometriosis online community: We are the worst club with the best members. Nobody wants to be a part of this club, but everybody is offered a level of understanding that can hardly be found elsewhere as our situations are so particular, very individual yet somehow the same. In Maslen, I immediately recognized an #endosister as we say. Having heard that I would be doing this review, Maslen felt the same when she “Instagram stalked me.” It is for this reason, as well as being a genuine fan of the book, that I was thrilled when Intima decided to reach out to Maslen and ask her for an interview.

Maslen agreed to have a virtual sit down with the journal’s editor Donna Bulseco and myself, and across time zones, each cozy on our own continent, the three of us had a wonderful online chat about chronic illness, social media, narrative medicine and the possible impact of books such as this one on society at large. It was my pleasure to chat with Kylie, and I hope it will be yours to listen to what we each had to say. —Alekszandra Rokvity

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Alekszandra Rokvity is a Serbian-born writer and PhD candidate working on her doctorate between the Karl Franzens University of Graz in Austria and the University of Alberta in Canada. She specializes in cultural studies and medical humanities. Her academic interest lies in the experiences of women with endometriosis within the healthcare system. Her doctoral dissertation is a case study of endometriosis that explores the connection between gender bias in the medical community and the social discourse surrounding menstruation.

Ms Rokvity has previously taught in Austria, Canada, Vietnam and is currently teaching in Belgrade, Serbia. An avid activist for women's rights, she cooperates with various NGOs such as the London Drawing Group (UK) and Vulvani (Germany).

Read more of her work on Medium.