Pain has something urgent to tell you but forgets over and over again what it was.
Pain has ambition but is utterly unfocused.
Pain folds the minutes into fascinating origami constructions with its long fingers.
Pain leaves the meter running.
Thus begins Sonya Huber’s forthcoming book Pain Woman Takes Your Keys, And Other Essays from a Nervous System. Pain Woman is a collection of literary, reported, and avant-garde essays about living with fibromyalgia and chronic pain. Huber uses pain as a lens through which she examines disability, gender bias, motherhood, and the very basic condition of living in a body.
Pain does not mean to harm you.
Pain is frustrated that it is trapped in a body that is ill-fitting for its unfolded shape.
Pain has been born in the wrong universe.
Pain is wild with grief at the discomfort it causes.
Pain Woman circles its subject, reporting on it from every angle, prodding it, sympathizing with it, questioning it, seeing it as a misguided visitor, an angry child. The book opens with the lyric essay “What Pain Wants,” a sentence-by-sentence exploration in the vein of Anne Carson’s “Kinds of Water” and Carole Maso’s “The Intercession of Saints.” The lyricism and poetry-prose hybrid continues throughout the book, interspersed with narrative reported pieces, humorous anecdotes, and sharp social commentary. In the next essay, “The Lava Lamp of Pain,” which describes when Huber began to feel sick but didn’t know why, her writing shines: “Lying in bed at night, I felt my skeleton pulsing. I shifted under the sheet and struggled to fold my tangle of bones together. I was a silverware drawer in a mess, a tangled wind chime.” She later describes her hand: “The blunted splay of a rheumatoid hand is a misconjugated verb, as if the articulate word of the hand has been misspelled.”
Pain emphasizes that it is not a god, but then makes the symbol for “neighbor” over and over, and you do not understand what it means.
Pain licks at its hot spots like an anxious dog.
[Pain] is shattered like lace or withered as an old tea bag. It is an anvil-hat, or a cross of crickets. It is a body suit of burrs dipped in gold paint.
For years, Huber was subjected to tests and endless appointments, but no one could tell what was wrong or how it might be fixed. Doctors failed her. “I was a bitchy patient,” she says, “crying after each doctor’s appointment…. I wanted to claw my way back to the body I knew.” She had nothing to rely on or go back to except for the pain, which was a constant. “Unlike the doctors, the pain itself was reliable and might be learned…. Pain creates its own knowledge.” And it’s from that knowledge that Huber has composed this honest, wise, droll book.
Huber tells us that chronic pain costs the United States more than cancer, heart disease, and diabetes combined. She states that only four U.S. medical schools require students to take a course on pain management, and that the majority of chronic pain patients are women. Huber is finally diagnosed with fibromyalgia, a disorder marked by musculoskeletal pain, fatigue, and cognitive, memory, and mood impairment. Huber writes, “It took roughly five years of pain-days to believe that the pain-free body had died. I need to understand that she is buried in photographs with my face, to understand that I am now living another incarnation of myself.”
In her book Tender Points, which investigates sexual violence, gendered illness„ and patriarchy through chronic pain, Amy Berkowitz relates that “up to 90 percent of fibromyalgia patients are female.” She cites “The Girl Who Cried Pain,” an article in Journal of Law, Medicine & Ethics, which says there is a strong precedent for “women’s voices not being heard or considered credible in the male-dominated healthcare system.” Berkowitz continues: “While I can’t say for certain how fibromyalgia would be discussed if the condition primarily affected men, I suspect that we would see words like ‘mysterious’ and ‘unknown’ drop from the literature, replaced by the findings—however incomplete—of research done thus far.”
This is a rich time to be a woman talking about chronic pain and disability. Many brilliant feminist writers are tackling the intersection of womanhood, disability, and pain. In an essay for Virginia Quarterly Review titled “Grand Unified Theory of Female Pain,” Leslie Jamison writes, “The moment we start talking about wounded women, we risk transforming their suffering from an aspect of the female experience into an element of the female constitution—perhaps its finest, frailest consummation.” Artist, activist, and write, Johanna Hedva—who wrote and performed “Sick Woman Theory,” which is about the political, emotional, and physical repercussions of being a sick woman—maintains that the “body and mind are sensitive and reactive to regimes of oppression—particularly our current regime of neoliberal, white-supremacist, imperial-capitalist, cis-hetero-patriarchy…. [Woman] still represents the un-cared for, the secondary, the oppressed, the non-, the un-, the less-than.” Eula Biss’s essay “Pain Scale” is a totemic depiction of how personal and indescribable chronic pain can be. Huber also credits neurodivergent and disabled essayist and intermedia artist Karrie Higgins as well as poet Andrea Scarpino with publishing work that paved the way for her ability to be vocal about her pain.
While women writing about pain and resultant disability may seem to be new, the Disability Rights Movement has a long and storied history. The Anti-Defamation League reports, “People with disabilities have had to battle against centuries of biased assumptions, harmful stereotypes, and irrational fears.” Add female, queer, of color to that, and you have the perfect storm, which many of these women write about. These authors are writing against stigma, against shame, against helplessness, and they are making breathtaking genre-shattering art that is not only a mirror for those with chronic pain and disabilities to recognize themselves in, but a mirror for all humanity to learn about grief, control, gender, strength, and beauty. Huber asserts, “Pain enacts itself in predictable ways and flows into the fault lines between all the other social problems one can imagine, mortaring the pieces in place. Those who are in chronic pain—the majority of whom are women—are viewed as unreliable, as an unwise investment, as a burden, as complainers, unfixable.”
Fibromyalgia is currently incurable, and as such, it flies in the face of consumer capitalist culture that promises there is a pill or purchasable cure for everything. People living with chronic pain know there is not. “The massive gulf separating the pained from the non-pained can be summed up in one question: ‘Have you tried yoga?’” Huber writes. She explains, “This is both trying to get a handle on an unfixable tornado, and, unfortunately, minimizing someone else’s experience with the idea that you might be able to fix it…. I have tried yoga and I enjoy yoga. But if you tell me to try yoga, then I will have to fight you.” The implication of this question and this line of thinking is “If you tried harder, you could fix it.”
To avoid isolation, Huber takes to Twitter, texting, message boards, and groups for her sanity. “We’ve been fused together, thankfully joined via the internet, where we pool our symptoms and start advocacy groups and share diagnoses and treatment strategies.” She helped organize an online Disability March alongside the physical Women’s March on Washington and the Sister Marches around the world, for those whose illnesses prevented them from participating in person.
To connect to others, Huber also takes selfies. Her commentary on selfies is one of the most insightful and original parts of the book. She writes, “The selfie is supposedly the mark of our particularly narcissistic age, but the self-portraiture remains mysterious and even sweet to me, a flashlink peering into the self’s darkness. Sometimes a regular selfie is a question seeking an answer. I wince at the ones in which the question in my eyes is too naked: Am I beautiful?” She takes pain selfies. “They seem almost sadistic, a collection of low points I should let go of. Yet I do not erase them. A selfie pulls me out of the tedium of days to allow me to narrate, to say that even here, amid the tasks, I am alive for future versions of myself to remember.” She distinguishes between the pretty selfie, the sexy selfie, the accomplishment selfie, the sick selfie, and the selfie of self-acceptance. “The square of the picture’s edge announces that for this moment, this woman was all she needed to be,” she writes.
I cannot let go of the pain, but I stop fighting it.
I am attempting to come to terms with it, to re-center my life around my own experience.
Pain is my new normal, and I want to sink into the meat of it,
to push my fingers at its seams,
to probe its texture. I want to claim this little hammock,
to say, ‘Look! This too is a good home!’
With acceptance, Huber recognizes the strange, agonized beauty of a pain-filled existence. She becomes “pinned to the Now, the breathless present, the kind of heaven that Buddhists and mystics and kinks know. I wish I had a safe word but I do not.” When pain prevents her from concentrating on writing an essay, she gives up and settles for a short blog post. It goes viral.
This raises the question of which woman is a better writer—me in pain or me without.
The pain-woman speaks in a pared down voice; she is a dreamy laser. You can’t tell her a single thing. She has room for only one emergency.
Pain woman…has a kind of messianic confidence that I do not have in my normal writing or even in my normal living.
Pain woman gives no shits. Pain woman has stuff to tell you and she has one minute to do so before she’s too tired.
She aches in slow motion for everyone’s crumbling life.
She wonders if “only pain can strip away the artifice” that hides her from herself on the page. The economy of Huber’s language, its sparse harshness like bone, gleams. “I am more curt because I have to reserve my strength.” Pain woman wrote this book. Or, it was a collaboration between her and Huber. One wouldn’t be what it is without the other.
Pain needs no altar. It is a deity older than worship and recoils from abasement.
Imagine pain’s misery, in fact—it has no hands to help you up.
Pain needs to see itself in the mirror through your eyes.
Pain’s song sounds like this: What is this? What next? Who am I? What does this mean?
In “Grand Unified Theory of Female Pain,” Jamison recounts a dream her friend had in which her Pontiac crashed into a million pollen-coated pieces. With her analyst’s help, she recognized, “My wounds are fertile!” And perhaps all of our wounds are fecund, giving rise to art, to community, to empathy, wisdom, and insight.
Out of pain, from tender points, we create. And the finished product can comfort, holding a mirror to our marginalized experiences. Huber writes that when she’s ill, “only the kingdom of the ill is of comfort.” This book is that kingdom of the ill—and also of pain, of sexism, of misogyny, of defeat. It holds a mirror for all of us for whom those are elements of reality. Pain is inherent in life, there’s no avoiding that. And while we’re left stranded in the middle of the road scratching our heads at the hurdles that come our way, pain woman takes the keys, and drives away.