“And what does it mean when the monster is us?” asks our panel’s event description.
The Oxford English Dictionary: monster meaning, “a mythical creature which is part animal and part human. . . any imaginary creature that is large, ugly, and frightening . . . a disfigured person . . . misshapen being . . . an individual with a gross congenital malformation. . . an ugly or deformed person, animal, or thing.”
Rosemarie Garland-Thomson writes, “The historical figure of the monster, as well, invokes disability, often to serve racism and sexism. . . . As departures from the normatively human, monsters were seen as category violations or grotesque hybrids.”
I am a “category violation,” a “disfigured person”—born with bilateral talipes equinovarus—better known as two club feet—that were surgically corrected when I was an infant. Born with Beta Thalassemia, a hemoglobin abnormality. Then later, chronic pain. For 25 years, I have experienced some form of chronic pain, whether related to the Reflex Sympathetic Dystrophy Syndrome I developed as a 10-year-old, or to the seemingly hormonal constellation of pain issues that began with menstruation: migraine, debilitating mastalgia, uterine fibroids, endometriosis. But even though pain has been a constant presence in my life, as have physical therapists, endocrinologists, hematologists, pain specialists of all kinds, I only began to write poetry about pain in the last year and a half, after a week’s stay at the renowned Mayo Clinic led me to understand there was no cure, there would likely never be relief. I would have to find ways to live with pain, not cure it. I would have to grow comfortable with my monsterhood.
Elaine Scarry writes in her influential book The Body in Pain, “Thus pain comes unsharably into our midst as at once that which cannot be denied and that which cannot be confirmed.” Later, she describes “how inaccessible the reality of physical pain is to anyone not immediately experiencing it.” This unsharability and inaccessibility of pain is also discussed by Megan O’Rourke in her essay “What’s Wrong with Me?” which details her struggle with an autoimmune illness. O’Rourke writes, “One of the hardest things about being chronically ill is that most people find what you’re going through incomprehensible—if they believe you are going through it.”
Let’s linger there: “if they believe you are going through it.”
One of the complicating factors of my kind of monsterhood is its invisibility. “But you don’t look disabled!” people tell me. “But you’re such a happy person!” Both are true statements.
Unless you see the scars running up and down each of my heels, unless you see me lying awake at night, unable to sleep from pain, unless you see me on the phone with nurses, pleading with doctors to do something, anything, to stop the pain, crying in the car on the way home.
Susan Sontag writes in her influential essay, “Illness as Metaphor,” “For purposes of invective, diseases are of only two types: the painful but curable, and the possibly fatal.” Chronic pain is neither; it exists in a murky middle ground that discomforts physicians, patients, and society alike: the person with chronic pain will not be cured, and will not die (at least not from pain). And her pain isn’t even diagnostically verifiable.
As Tobin Siebers writes in “Disability in Theory: From Social Constructionism to the New Realism of the Body,” “The greatest stake in disability studies at the present moment is to find ways to represent pain . . . There are only a few images of pain acceptable on the current scene, and none of them is realistic from the standpoint of people who suffer pain daily.” Even in a field like Disability Studies that should be attuned to issues like chronic pain, there is a dearth of creative and scholarly discussion of the pain experience. Bodies like mine—monsters who can “pass” as healthy, who can hide their monsterhood at least some of the time, monster bodies like werewolves who seem “normal” but transform unpredictably from “normalcy” into sites of unbearable pain—remain invisible.
And what does it mean when the monster is us?
Disability Studies has taught us the social construction of disability, feminism and critical race theory have taught us the social construction of bodies. We construct “normalcy” and monsterhood. We decide what bodies to celebrate, what bodies to denigrate. Garland-Thomson writes, “Disability reveals the essential dynamism of identity. . . . it undermines our fantasies of stable, enduring identities in ways that may illuminate the fluidity of all identity.” Identity is fluid. The body is fluid. Disability and ability are fluid.
Early in the 18th Century, the definition of monster shifted to denote, “an extraordinarily attractive thing . . . an amazing event or occurrence. . . a prodigy, a marvel. . . a remarkably successful person or thing.”
Examples from the Oxford English Dictionary:
1931 New Yorker. Daddy, what’s a Second Monster Week?
1968 Rolling Stone. Of course, man, she’s a monster. She’s like the best
of that type of singer.
A year and a half ago, I began to write my pain experience because the Mayo Clinic doctors—some of the best in the country—told me pain was my future. There is no cure. Indeed, there is not even a diagnosis. I began to read: Paul Monette, Audre Lorde. Body as a site of loss. Body as scarred. I wrote to try to make sense of my monsterhood, what it would mean to live the rest of my life in pain. With good days, with good months. With bad days. With month after month of pain. I wrote to try to communicate the incommunicable, the unshareable and untranslatable body in pain.
I read Peggy Munson’s Pathogenesis:
“I should have walked on cobblestones that day. While I could still take walks.
I try to sing when the perpetual is good.”
The monster body as misshapen, disfigured, ugly, only partly human.
The monster body as attractive. Remarkably successful. Prodigy. Maybe even sacred.
There are many risks associated with admitting monsterhood when you can pass as “normal.” But in the past year and half, writing my monster body in all its gruesome details, all the nights I couldn’t sleep, all the time I spent in doctor’s waiting rooms, something began to grow in me. Not acceptance—I still will work to be pain-free. I still dream of a life without pain. But maybe a truce. With my body’s many disfigurements. My body’s many successes. bell hooks writes, “Only in fully knowing the wound could I discover ways to attend it.” The monster I am writing towards, the wound I am learning to know, growing towards: a vision of myself as: “Of course, man, she’s a monster. She’s like the best.”
Planet of the Blind 