Bodies Watching Home Movies After My Double Mastectomy
Inside her small body lives every answer to every obstacle. No maps are necessary. She is the map.
On screen, a pale dark-haired girl and her pale dark-haired mother sit cross-legged on a mauve carpet. Between them, an empty hamster ball is perched on a colander. The girl—little me, a person I used to be—wears a plastic tiara and a magenta hand-me-down dress three times her size with puffy sequined sleeves. She stares at the ball as if trying to decode a message inside. Her hands hover centimeters above. She slams her eyes shut, whips her head back, inhales and exhales gusts loud enough for this 1989 camcorder’s mic to pick up.
“Rebeck, what are you doing there?” asks the voice behind the camera.
Her eyes swing open. “Please be quiet, Daddy. I need to con centrate.”
“Why’s that?” Her father is interviewing her, but she does not understand yet the need to document that which will someday change or be lost. “What’s in there?” he asks.
“It’s my crystal ball . ” Her voice is surprisingly adult. It is raspy, thick with a Staten Island accent: this, one of many things she will lose. “It’s trying to tell me Mom’s future. And mine. But I need to concentrate.”
The scene ends and I am back here on the couch of my parents’ living room, propped up just so, unable to lift myself. I watch the blue screen for a while.
In the notebook open on my lap, with handwriting larger and wobblier than my own, I write: Before this was ever known to be the color of a video ending, it was the color of a calm blue sea.
“Another?” Dad asks.
I smile yes. Home movies are my favorite tonic, and he knows this well. The binder of DVDs is presented to me, his magnum opus. My father is the documentarian and archivist of our family. He’s recorded, preserved, edited, transferred, backed up, and organized these memories. Our family is his art.
He waits for me to open this precious tome—but I can’t, not yet. I am only two days out from surgery. “It’s too heavy for her, Steve,” my mother reminds him. Eighteen years ago, she recovered from this same surgery.
He opens the binder, closes his eyes, draws invisible curls in the air with his finger, and lands on a disc. “2000?”
“Too late,” I say. “Way too late.”
“How about 1990?”
“That’s better than 2000. But Evan’s just a baby then. A baby baby. He doesn’t do too much yet. He can’t talk.”
“In 1992 he can speak, though,” Mom says. “In 1992 he can speak and do things. But he’s also still cute.”
“1992,” I repeat. “Is everyone alive then?”
“Yes?” my mom whispers, a half-question. “Aunt Dottie was the first to go. That was—” a long pause as she counts on her fingers “—’94. Yes, everyone’s still alive in ’92.”
“1992 it is,” my father says. As he flips back through time, I watch prisms appear and disappear on the discs, each one a tiny flattened planet.
On screen, the small dark-haired girl is five, six, seven—but also not. Her imagination is too supple for such containers. She dresses in costumes almost exclusively. She is Belle from Beauty and the Beast. She is a bride. She is a roaring twenties flapper. She is her great grandma Rose, or the character of Rose she’s shaped from stories, or at least wearing Rose’s coat. She wears a yellow polka-dot bikini and a rainbow tutu, both left over from dance recitals. She is John Lennon in a tiny suit, her mask a photocopy of his face. For visibility, the mask’s eyes have been cut out.
From this couch, I see her but she does not see me.
I am thirty-one, recovering from my recent preventive double mastectomy with a rotating cast around me: My mom. My dad. My partner. My brother. Friends and cousins. My dog, Audrey, watches over me like a pointy-eared, wire-haired fairy godmother. I am swaddled in blankets, droopy with painkillers, trying to get high on the past, or at least nurse some nourishment from it, but instead, I’m pausing, rewinding, examining, documenting in notebooks what I witness and feel under the spell of the little girl’s visions. I am opening every locked drawer inside of me, foraging for what she had and I have since lost: a passport to go everywhere and become anything.
My body is a container I am stuck in.
It chains me here. Where it is anchored, I must be too.
The little dark-haired girl’s body does not chain her to anything. Romping through a narrow backyard with one pipsqueak tree and a turtle sandbox filled with dirty rainwater, she sees kingdoms, jungles, underwater caves, spaceships, and cities. She is queen of the sea, sorceress of the land, the emperor of make-believe. No matter what trouble she smacks into—invisible snakes, witches disguised as squids, poltergeists, Maleficent’s spindle, wolves dressed in her grandmother’s clothes, a giant piranha that can breathe on land—she has not one hiccup in confidence.
Photo of author and mother
My body is a map of crimson roads.
Where do they lead?
The little dark-haired girl’s fingers are antennas that receive signals from beyond the Milky Way. They are keys that open endless doors. They are wands charged by enchanted voltage. With them, she releases Hammie the hamster from an evil queen’s ancient curse and summons him back into his rightful body. Her powers are fierce enough to rescue Evan, Mom, Dad, Hammie, and all citizens of her imagined realms from any threat.
She knows the exact right routes to escape any peril, and just in the nick of time. Inside her small body lives every answer to every obstacle. No maps are necessary. She is the map. She travels through time and space, across dimensions, in and out of bodies, eras, terrains, and universes. I watch as she becomes and becomes and becomes, gathering self upon self.
Somewhere in between the me on screen and the me watching it, I became a writer. I studied creative writing as an undergrad and went on to pursue my MFA in a large program divided by concentration. When meeting someone new, students would often ask each other, instead of, “What do you study?” the simpler, “What are you?”
“I’m poetry,” some would say.
“I’m nonfiction,” said others.
“I’m fiction,” I would answer.
I am fiction. By this, I meant—or thought I meant—I had a passport to go everywhere. To become anything.
Now I teach a fake writing class. Or maybe I should say I teach a writing class that orbits the theme of fakery. We talk about authenticity, disguise, costume, mimicry, forgery, replicas, ad infinitum. “Through writing fiction,” I tell my students, “you get to live many lives, lives other than the ones you’re bound to in reality. To write fiction and to read it is to play inside the multiverse: to explore and experience what you may never have a chance to in the confines of your body. Here’s your chance to dress up awhile as an alternate self.”
“My favorite view of fiction,” I tell them, “is that it’s a practice in expanding and deepening empathy. To write or read or view from the perspective of someone else is a practice in becoming another, in understanding beyond the borders of yourself.”
Sometimes when I think about measuring my relationship to fiction, I think about this:
The first time my mom had cancer (breast), I was thirteen. For the full year she wore one, I didn’t once see her without her wig.
The second time my mom had cancer (ovarian), we went wig shopping together. I was twenty-three. Only as the stylist demonstrated how to properly secure a wig did I recognize how much effort Mom must have expended those ten years ago: how careful she’d been to protect her children from seeing the wreckage of her illness.
This, the third time (ovarian, metastasized to the spine), the diagnosis arrives while I’m at a writing residency in the Catskills, where I’ve come to finish my magical realist/sci-fi novel. This, the third time, Mom accepts my offer to drive to her home in New Jersey. This time she allows me to hold her in bed while she weeps. We have both, for a moment, put our fictional worlds on pause.
When I arrive back in Woodstock I sit at my wide desk with its piles of papers and books, eager to swaddle myself in stories. But I can’t wrap my head around narrative, can’t cover or comfort myself inside the blanket of it. My mind refuses to make order out of the chaos of life, as story tends to do.
Defeated, I leave my desk. Instead of writing fantastical worlds where ancient potions extend life and chimerical creatures roam, I take long walks in the woods, collecting rocks, weeds, tree bark, and twigs—but especially fallen leaves, evidence of life and of decay. I begin see spines in everything. The midrib of a leaf. The stem of a sunflower. A feather’s rachis. The difference between a book and a gathering of pages. The Washington Monument. The bendable part of my desk lamp. Tree trunks. Skyscrapers. Rivers. Highways. Suit ties. Tall, many-shelved bookcases. The columns holding the White House up.
It is with the spine that we divide the animal kingdom in two: vertebrate and invertebrate.
It is with the spine as metaphor that we divide the strong from the weak.
It occurs to me that I am hoarding connections. Desperate to understand what is happening inside my mother’s body, I shape the world around me. This, too, is a form of storytelling, and there are too many fallen leaves to process. I must remember that bone is just bone, a leaf just a leaf. My mission pivots. For the time being, I am not here to hatch new realities but to see, smell, taste, touch, hear. I must become an observer, a witness: inventor of nothing and recorder of everything.
At my desk, I turn away from words. I arrange and sketch my gatherings. My hand tries to describe the lacy tentacles of each petals’ veins, the spindly fingers of these groundless roots . There is no story here: only faithful documentation of what is true.
Artwork courtesy of author
Sometimes when I think about measuring my relationship to nonfiction, I think about this:
The first time my mom had cancer, I was thirteen, in the throes of puberty. As tumors grew inside her right breast, as this breast was surgically cut out of her, breasts besieged my own body.
The second time my mom was diagnosed with cancer, I was twenty-three. Weeks before the finding, I’d visited the genetic counselor and found that I, too, had the same genetic mutation likely responsible for both of her cancers. The letter from the counselor reads: “The likelihood of a woman who is a carrier of a BRCA1 mutation developing breast cancer is 54–87%. The chance of developing ovarian cancer is 34% in one study, but as high as 65% in another.” This letter goes on to detail options: the safest being the removal of body parts. “Women who remove their ovaries and their breasts reduce the likelihood of developing these cancers by 95%.”
This, the third time my mom is diagnosed with cancer, I am thirty-one. I’ve come to my parents’ house from my home in Brooklyn to sit with her during a chemo infusion. On the morning of her appointment she wakes me gently, sitting at the edge of my childhood bed. “Beck, I don’t want to pressure you.” She means it. “But the sooner you can do this the better.” She means this more.
Mom tells me about her friend’s daughter who, at twenty-seven years old, was recently diagnosed with breast cancer. She says this in a way that tells me too many things to process at once. We are quiet for a while. We both pet Audrey, who sleeps every night at the foot of my bed, and who has now wiggled up between us. I try to decode the precise way my mother swallows as she looks down, jaw tight, and up, eyes bright wet. For eight years she’s carried the burden of her daughter’s future peril while I’ve avoided the safest options. I fill in the hole of her silence with words of my own: I am your possible future. At least let this suffering be purposeful. At least let this horror help you to save yourself.
No more than two months later, my breasts have been removed. In their place, two silicone elastomere pouches are secured under my skin and pectoral muscles. Over the coming months, they will gradually be filled with saline, a little more each week. When I am told these gradual fills will train my skin and muscle to expand, I can’t help but think of my students: how I’ve told them that if they fill themselves with stories, their empathy may expand.
My pathology report comes back clean. My breast tissue shows no signs of cancer. “One thing checked off the to-do list!” Mom says with a dab of heavy humor. I now only have my eggs to freeze and my ovaries and fallopian tubes to remove by the age of thirty-five.
My body aches for lost breasts today; it will ache for lost ovaries tomorrow. This is how I relinquish myself: bit by bit, part by part.
I am watching home movies when my mother comes back from her tattoo appointment. She shows me her back, now inked with black dots that will guide her coming radiation treatments precisely. The tumors are in her spine, after all. The marksmanship must be exact.
We sit on the couch. In our newly mapped, ever-costumed bodies, we watch across the canyon of years as the thick-haired mother on screen watches over the little girl performing for an audience she cannot possibly know, for a future riddled with loss she naturally prepares for through story. When the girl builds a fort around her brother and the pillows collapse on him, she shrieks, “Don’t die, Evan!” with a fervor that tells us she truly believes the walls of a house are collapsing on him.
The sun has set. Mom and I share a blanket and put in another DVD: It is in this scene that I find the locked drawer I’m searching for.
Author and brother in costumes
On screen, the little dark-haired girl wears the same tiara and magenta, puffy-sequin-sleeved dress she wore while reading hamster ball fortunes. “There are snakes everywhere. Be careful .” She points out to Evan the measly roots of the pipsqueak tree. “If they hear us they’ll bite us and turn us into snakes too. But don’t worry. I’m going to save us all.” She’s a cocky one: prophet and heroine of her own invented world.
The view quakes lightly. To the camera she declares: “This is not funny. This is really not funny. There’s danger, Daddy. And we have to get back to the sea or else we’re toast.”
“What sea are you trying to get back to?” asks the laughing voice belonging to the hand that holds the camera.
“ Greece ,” the girl says, frustrated by her father’s inability to see all that is so obvious around them.
“Now I’m going to get back to saving us,” she says to her brother: “I promise.” Behind her, little Evan stands with his hands folded obediently, surrounded by snakes, rooted in place between the tree’s roots, waiting for rescue.
“Rebecca, hon.” The camera pans to the right, where my mother, previously out of frame, sits in a lawn chair watching. She radiates, her gaze luminous as she watches a small self-proclaimed savior wearing the body of her daughter, a daughter so hungry to exit the real world of this backyard and enter a new one booby-trapped with imagined dangers at every turn.
By way of the screen, my mother sends my father—and us, here, watching from the future—a sweet conspiratorial glance. Look at these nuts we’ve made, I imagine inside her silence. Look at these two little people with countless little worlds inside of them. “Beck, how are you going to save us?” She is as curious about the secrets this little girl contains as I am.
“I can change form just like that.” The little girl snaps her fingers, jazzily juts one hip. As she leads her brother through the tangle of snakes, her dress slips down the front of her—but she continues on, unselfconscious, wearing this ensemble she’s been taught represents femininity, all the while carefree about her non-breasts, as flat as her belly.
“But how can you do that?” little Evan asks.
“I’m a shapeshifter,” she says. “That’s how.”