What Does It Mean To Live With A Body That Can’t Be Fixed?
Three new books by Ada Limón, Sonya Huber, and Sandra Gail Lambert change the narrative around what it means to live with illness — and be well.
Writer Susan Sontag’s notion that we each reside “in the kingdom of the well and in the kingdom of the sick” has become shorthand in essays like the one I’m writing. In the context of chronic pain or of disability, the usefulness of this statement as a reference point rests on the word “and.” Thinking about being well and sick opens up possibilities of moving back and forth between the two kingdoms or even of living in both at once. Sontag's essay in the New York Review of Books also points to the ways people are treated based on the kingdom in which they are assumed to reside, whether temporarily or for a lifetime. Forty years after that essay was published, I continue to grapple with its implications — as the daughter of someone with a disability and as someone who has struggled with chronic illness myself, and when reading other people’s experiences of illness. That’s why I welcome three new books that each offer a different prism through which to view sickness and disability. The authors of these books are not merely surviving with chronic conditions, but thriving. Their books counter traditional narratives that equate illness with weakness and women with hysteria by providing complicated, lived contexts in which illness or pain is not the be-all and end-all but, rather, one aspect among many in their lives.
In which kingdom do writers like Ada Limón, Sonya Huber, and Sandra Gail Lambert reside? Limón has severe curvature of the spine and recurrent bouts of vertigo; she started seeing a physical therapist for scoliosis when she was 17 years old. Huber has rheumatoid arthritis, an autoimmune disorder that damages the lining of the joints; her symptoms began five years before she wrote Pain Woman Takes Your Keys. Because of the long-term effects of a childhood polio infection, Lambert uses a wheelchair and seeks treatment from acupuncturists and chiropractors when her “arm is not back to regular, whatever that was.” Their superbly written books — Limón’s The Carrying, Huber’s Pain Woman Takes Your Keys and Other Essays from a Nervous System, and Lambert’s A Certain Loneliness — show us that there’s no clear border between the well and the sick. These are books that reside in the space of and. They elucidate the possibilities of lingering in limbo between sick and well, and they shift the idea of what “normal” could look like.
Because these three writers face unpredictable disability with no end date, they must focus on the problem of living.
Importantly, though her essay is applied broadly now, Sontag focused on tuberculosis and cancer, two diseases that have historically been seen as death sentences. Anya Silver, a poet who lived eight years with metastatic breast cancer, writes in her stunning poetry collection Second Bloom, published last year, “I don’t dread death more than you do.” In it, Silver makes clear she knows she will not be cured, that regular life is a past she cannot return to. She states bluntly that she doesn’t “know why I’m still alive.” Her acknowledgment of her proximity to death is an arresting statement from the kingdom of the sick, in a work that centers her experience as a person expecting death even as she embraces each moment. (She died of the disease in August.) But what of those who must live on with illness, as Limón, Huber, and Lambert do with chronic vestibular neuritis, rheumatoid arthritis, and the lingering effects of a poliomyelitis infection, respectively?
Because these three writers face unpredictable disability with no end date, they must focus on the problem of living. Limón, Huber, and Lambert get around; they aren’t picking out urns or plots. They have, as Huber notes, “the language of lifespan.” They are also among the more than 1 in 10 Americans who experience chronic pain, defined by the National Institutes of Health as having pain daily for three months. That’s more than 25 million of us who, in the words of Huber, have a body that “shifts, rankles, resigns itself to a grade that does not fit its effort, its hope.”
That these three authors are women is crucial to their explorations of disability, illness, and pain and how they are treated, both in a formal sense by health care providers and in an informal sense by family, friends, and strangers. The gender disparities in patient care have been documented in numerous studies over many years. As an article last year on the Harvard Health Blog summarized, women are less likely to receive pain treatment than men, are more likely to be prescribed sedatives instead of painkillers, and tend to have to wait longer for pain treatment.
These writers are sick — dizzy, in pain — and they write of being perceived as sick, not normal, not up to code. Yet in focusing on family, work, nature, and the challenges of living, these writers have created testaments to living well, even beautifully, if imperfectly, in a society obsessed with fixing itself.
Huber’s essay collection is the most focused on pain and disability, with every essay addressing the topic directly in an intensity of accumulation that mirrors her own chronic pain itself. Women’s pain is often doubted, as if we’re crying wolf as a group, and treatment is sometimes designed to calm us down as much as it is to address the pain. The experiences that Limón, Huber, and Lambert share with readers are experiences of gendered bodies in pain, of people whose social identity — their roles, their perceptions of themselves, others’ perceptions of them — is shaped by being women shuffling among specialists.
Limón writes about the antagonistic relationship between herself and her body: “I am in a raging battle / with my body, a spinal column thirty-five degrees / bent, vertigo that comes and goes.” The battle offers an intriguing metaphor for our relationship with illness. It’s one thing to battle cancer or infection, but what if the body itself — one’s own, unfixable spine, joints, or muscles — is the enemy, as Limón suggests? The ways we think about the atypical body can put us at war with ourselves as well as with the world around us — especially in how we are forced to perform our illnesses.
Not appearing weak feels paramount to living a successful life.
Limón’s The Carrying includes numerous poems about how her bent spine and dizziness are intertwined with her life. She writes: “Invisible pain is both / a blessing and a curse.” Having been to urgent care, the poem’s speaker — Limón herself, we can assume from interviews like the one at Publisher’s Weekly from July in which she talks about her bouts of vertigo — has a purse full of pills. “Wonder Woman” is a short, beautifully wrought poem that conveys human frailty and also a power we share. In it, she thinks about the invisibility of her pain: “You always look so happy, / said a stranger once as I shifted to my good side / grinning.” In these lines, she hides her physical reality, and the other person doesn’t understand or ignores her body’s shift. Limón smiles, keeping up the charade. Pain, while felt fiercely, can go unnoticed not only by strangers but by friends and coworkers who may find others’ discomfort uncomfortable fodder for an otherwise pleasant interaction. The not noticing seems like less of a hassle, less uncomfortable, and less dangerous for everyone involved. Not appearing weak, then, feels paramount to living a successful life. Yet, line after line, Limón challenges this notion of what a vulnerable woman can be.
A woman in pain may seem vulnerable, like a mouse or like mousy Beth March in Little Women, whose “pain claimed her for its own,” or she may seem untrustworthy like Serena Williams, whose nurse thought pain medication was making her confused about blood clot history and symptoms of pulmonary embolism. “When a person confesses to being sick,” Huber writes, “she is seen as less reliable, less capable, and therefore less of a person within the social and production networks of the well.” In fact, a recent review of 77 scientific articles about pain bears this out, with women portrayed in peer-reviewed studies as sensitive, emotional, unfit, and self-doubting in comparison with seemingly stoic, self-assured men. These descriptions in the scientific medical literature may have blossomed in the 1990s, because, before that, women were not regularly included in medical research on human subjects.
In A Certain Loneliness, Lambert tries to explain her pain to her mother, who can’t seem to understand its source or symptoms. She’s confused and upset by Lambert’s tiredness, which “seems to be going on forever.” Lambert, who has recovered from the polio infection of her childhood, has a body forever changed by it. She has moved from leg braces to crutches to a wheelchair, and eventually an electric one. Her pain level varies, though it is sometimes debilitating in the wake of exertion. She won’t be hopping back over to live completely in wellness, particularly as her mother defines it. “Each day how to grocery shop and cook was something to solve,” Lambert writes. We see this attempt to solve in action while she works at a bookstore or on camping trips with friends and, later, alone. In one passage, she describes a dinner party, aware she may not host many more. Her old friends understand the time and effort it takes to set the table, make the food, and open the door, but her new friends admit they almost canceled at the last minute, as if it were no big deal to reschedule. As her longtime friends meet Lambert’s eyes, she feels embarrassed that “they know how much heartbreak that would have been.” This moment of unintentional hurt lingers, one of many in this memoir that evokes tremendous emotional power in highlighting the seemingly banal choices we make and how they adversely affect the sick, those in pain, and those with a disability. From person to person, situation to situation, Lambert adjusts what she wants others in her life to know or think they know, playing with the possibilities inherent in the space of and. “There’s a pleasure in being both known and unknown,” she writes.
The porousness of the border between well and sick calls into question how we define wellness and normalcy generally.
The porousness of the border between well and sick — the possibility that one might be well and sick at once, straddle good days and bad, or perform against type — calls into question how we define wellness and normalcy generally. Such definitions go back at least to the anatomical drawings of the 18th and 19th centuries, which used bodies of executed criminals and unclaimed deceased hospital patients as models for rendering images in which body parts were idealized for greater medical understanding. These images present the body as static: either as healthy or as diseased. Additionally, “Single body parts replaced whole, articulated cadavers. Faces, if they were shown at all, were depicted in a state of sleep or death,” writes Richard Barnett in The Sick Rose. Conventions for these medical illustrations, such as the color blue for veins and yellow for nerves, were “the results of artists and anatomists seeking to connect the facts of a single dead body with the wider truths on which medicine was coming to insist.” The artist’s version of a particular example (based on a cadaver, not a living person) became emblematic or generalizable, and the assumption that there existed a typical human body — and therefore an atypical body — was embedded in these anatomical maps, and became references physicians used to treat living patients.
Today, modern-day imaging can look deeper to reveal whether a body is healthy, but what happens when it cannot pick up what is imperceptible? In “From the Ash Inside the Bone,” Limón writes of her chronic vertigo: “MRI says my brain’s hunky-dory / so it’s just these bouts sometimes.” In other words, the anatomical rendering of her brain reveals that she is healthy, but that conclusion doesn’t sync with Limón’s experience of her body or, rather, her body’s experience in the world. The doctor has run some tests, seen nothing physiologically faulty or treatable, and determines that she’s well, while her world continues spinning. Health care providers look for ways to explain a problem, but symptoms the physician can’t see through imaging, blood work, or observation leave the problem largely untreatable in a meaningful way. The physician’s relationship is to the visible disease or defect, rather than to the patient and her needs.
Huber, meanwhile, writes of trying to appear healthier than she is so that her pain is a medical challenge her doctors can explain and manage and also so that she, as a person, doesn’t seem unmanageable. After all, there exists a history of treating women for hysteria. Women patients deemed hysterical were treated for supposedly making up or exaggerating complaints or being generally unreliable or, worse, troublesome. Huber hesitates to complain much, to appear troublesome, “because I don’t want to close off access to my current level of treatment. Not ever again. I am terrified in the doctor’s office. I go in and minimize. I shrug … for fear of being branded emotional, hysterical, psychosomatic.” In the physician’s office, Huber tries to perform as a patient with the simplest case of rheumatoid arthritis she can muster, a person willing to work hard to get better. Even her rheumatologist focuses on the disease rather than the attendant symptoms, as if pain is not enough, in and of itself, to treat in order for Huber to move through daily life more comfortably. “I am perfectly okay with the fact that I might not be fixable,” she writes, knowing that rheumatoid arthritis isn’t curable. But what does it mean to be officially labeled unfixable in a society so invested in being fixed?
Lambert, who balances humor, sadness, anger, and joy throughout her memoir, faces antagonism when she applies for social security disability, a process in which she must be deemed impaired (impairment is the government’s term) enough to warrant resources. The forms “were designed to catch me in a lie,” she writes. And in order to prove herself worthy of financial resources, she must prove that the impairment is not merely the result of an unwillingness to fix herself, but that she attempted a fix and has still come up short. In one passage, Lambert notes instructions for the physician’s inspection that tell her “to bathe and wear clean clothes.” This would not be worth noting — unless, of course, one’s disability made it difficult to bathe and dress, a reason for the application in the first place. While she must prove that she is not well, she must still be able to take care of herself in a way that keeps up appearances. Now in her sixties, Lambert writes incisively about years of making her way in the world with crutches, braces, and a wheelchair. “The more I used the wheelchair,” she writes, “the more my life expanded.” While these devices are often seen as signs of confinement, restriction, or deficiency, physical aids can be liberating. At first, Huber says of getting a cane, “I didn’t want to be a slow, three-legged girl.” Then she sets the cane’s tip on the ground and leans into it. “Pressure eased,” she writes. “I could walk with a bit more balance.” That expansion wasn’t always easy for these women, and it took a year to “wrest a real power wheelchair from Medicare” that allowed Lambert to host dinner parties and go kayaking on her own.
Lambert talks about the body’s need for touch and the importance of skin.
Both Lambert and Huber also talk candidly about the physicality of sex. Lambert writes, “The sun’s heat on a bare shoulder recalls a kiss, after sex, when lips become soft and wide.” She writes of her intimate relationships, the bodies of other women, and why these relationships flourished and faltered. She talks about the body’s need for touch and the importance of skin. She calculates hugs, and she sits on the couch at parties so that she can rub shoulders with friends. Lambert does not take intimacy for granted.
Huber, on the other hand, admits, “I had taken my hips completely for granted.” After establishing a “wild and crazy” sex life while dating her husband before she developed rheumatoid arthritis, “Suddenly issues of endurance, certain positions, and even whether I could have sex on a certain day were all completely unreliable and nonnegotiable.” Like Lambert, Huber explores the effort that physical intimacy requires: “Desire is a different substance now, a process requiring attention and effort. It is no longer a thoughtless release.” In fact, Huber’s essay “A Pain-Sex Anti-Manifesto” is a must-read; it demonstrates that sex can be an art and, more generally, that individuals can sew “up the ways of loving each other,” no matter what body they have.
Huber considers intimacy and touch broadly, while Lambert’s chapters about camping, kayaking, and swimming capture the importance and splendor of intimacy with our surroundings. “The remembered rhythm moves through me, moves me through the water,” she says of swimming in a river. “I’ve arrived. … Tomorrow, the next day, for the next week, I’ll hurt from this. Today, however, I know who I am.” Limón writes of a similarly invigorating experience as a gardener in her poem “The Burying Beetle.” While weeding, she finds herself “missing everyone I know.” She goes on, “Sure, I know / what it is to be lonely, but today’s special / is a physical need to be touched by someone / decent, a pulsing palm to the back.” She lies down in her garden. Loneliness is a certainty in life, and pleasure is awareness of one’s own body and connection with its surroundings.
These authors know and appreciate their bodies as deeply as I hope to know and appreciate my own one day, regardless of my level of wellness. These books about striving and taking care of oneself, sometimes while staying in bed, do not reveal these women as heroes (okay, Limón is a little heroic in “Wonder Woman”), nor are they lucky their situations aren’t worse (yes, polio could have killed Lambert). In fact, sometimes things are worse, and there’s little reason to be calm, composed, or grateful, even if that’s what the doctor, friends, or strangers would prefer. These women are not drama queens, as Donald Trump suggested about a Washington Post reporter who has an inherited joint disorder. Their conditions are not the means for redemption nor a way to get attention. These assumptions about disability and pain reveal how little we want to acknowledge disability or pain, as if awareness of someone else’s physicality, awareness of each other’s unfixability, burdens us.
Traditional narratives we have been told about the well and the sick need revision. The Carrying, Pain Woman Takes Your Keys, and A Certain Loneliness implore us to throw out age-old myths about pain, chronic illness, and disability. Readers will see that the question of well and sick is not about either/or but, instead, about living on the continuum that holds space for both. Gaining a deeper understanding of one’s own pain or someone else’s has the potential to radically alter our interactions day to day, and to shift our focus away from a desperate need to be fixed and also from the exhausting performance of wellness into a more manageable way of living a fully realized life. ●