By Courtney Moreno
Billy was sitting on a stool at the kitchen counter, swallowing the last of her medications, when Gustave arrived. She watched him dig for his key. The front door was a French door, with panes of glass embedded in the wood. During the remodeling, Billy’s parents had argued long and hard about the safety issues of that particular kind of door, illuminating every type of person who would view it as an invitation to spy, or to rob, or to steal an identity, and the never-ending conversation had sounded so very, very absurd to Billy that she longed to dress up as Freddy from Nightmare on Elm Street—her mother’s favorite and most feared horror movie—and rake talons against the front window late one night. Not because Freddy had anything to do with the front door discussion, but because Billy was pretty sure if her mom looked out the window and saw Freddy Krueger, she would pee her pants. It would be so worth it, to see her mother pee her pants. Gustave waved to Billy as he let himself in.
Every Monday, Wednesday, and Friday, Gustave, her science and math teacher, arrived in the morning, usually with a stack of textbooks and an array of props to help illustrate the day’s lesson. But today Billy sort of wished he weren’t coming. She wasn’t in the mood to be homeschooled; she wanted to go back upstairs and work on her stand-up routine. For years now, Billy’s sole ambition was to become a comedian; she divided her free time between studying the greats and working on her own material.
Leaning against the kitchen counter, Gustave opened his backpack and retrieved an enormous biology textbook. He had a giant nose. His tousled hair was so thick his scalp gave the appearance of a tightly fitting cap. Many times Billy had thought his nose too big for his face, but he would look girlish if his nose were any smaller, and anyway, she wasn’t particularly interested in the wispy, angelic-looking pop stars and teenage heartthrobs of her generation. Gustave held the textbook with both hands and let it land on the counter with a single, resounding thump. The water in Billy’s glass rippled.
“Are you excited or what?” he asked.
“Or what.”
Gustave had also brought a silky reusable bag that he now unpacked: an array of citrus fruits, a ball-and-stick molecular model kit, and a small bag of fresh scallops, twice wrapped and sealed, the white label affixed to the outside of which said, “½ lb, $7.49.” He opened the fridge and cleared a space for the scallops. He would be graduating Northwestern University soon, in about a year, and who knew what he would do then, probably move away, but that was something Billy tried not to think about. She began playing with the molecular model kit, creating what looked like a snake except that it had bony tumor-like growths along the length of it.
Returning to the counter, Gustave plucked from the molecular model kit and assembled what looked to her like a wiener dog. “Ethylamine,” he said.
“What’s with the food?”
He tossed the ethylamine molecule so it cartwheeled across the counter and then clapped his hands once, loudly. “If I said we were going to learn about the building blocks of life today, what would you think I meant?”
“DNA.”
“See, that’s the thing, exactly—everyone wants to talk about DNA. That’s always the starting place—and of course DNA is elegant and has led to some exciting science—but no. The building blocks of life are actually amino acids, because they make up proteins.”
She pointed at the ball-and-stick molecule he’d thrown. “You lost me at the wiener dog.”
“If you get one thing out of today’s lesson, I want it to be that the entire purpose of DNA is to make proteins. DNA is basically a floor plan, a code, that tells your cells which proteins to make and when.”
Before they started, he got out the questionnaire. She grabbed for it, groaning, but he lifted it out of her reach.
“But I know it already, Gustave. Memorized and everything. Number one: C, a little; number two: B, almost as often …”
“I’m required to ask you these questions orally every Friday. They’ve done studies that show people respond differently when hearing a question rather than—”
Billy giggled. “You said oral.”
“In the last week, have you had any numbness or tingling in your extremities?”
“A little,” she said, already slumping. The questionnaire had a way of defeating her.
“How often have you had numbness or tingling as compared to your established baseline? Choices are: A, as often as before, B, almost as often, C—”
“Almost as often.”
Gustave and Billy’s parents had created the questionnaire together, basing it off of existing neurological surveys because, as Gustave had explained, her disease was thought to originate from some kind of backward neurological response. Like her nervous system was having a temper tantrum, a regression, the inner thrashings of which were sometimes minor and other times extreme. Flare-ups lasted six to eight weeks and were more painful than anything, a seismic shifting of old and new bone under the surface of her skin. She hadn’t had a flare-up in eighteen months. She was probably due.
“Let’s see, we can skip the seizures part …”
“Radiating,” she said.
“Here we go. Have you experienced any neuropathic pain and if so, how would you describe it. Burning, sharp, cramping— ”
“Radiating,” she said.
He looked at her. “How long?”
“That’s not on the questionnaire.”
He had beautiful eyes, a crushed-cinnamon kind of brown, which is why if his nose were any smaller, he would have looked like a girl.
He said, “Billy.”
“Don’t ‘Billy’ me, I memorized the stupid thing, the next question—”
“Billy.”
“Like a month. Give or take.”
“Why didn’t you tell me?”
Because I want to talk about other things, she thought. Because any new symptom is scary. And because I hate when you look like that—like a Dachshund after all the bacon is gone.
She said, “Can we please just start the lesson?”
Gustave did what she asked, returning the questionnaire to his backpack, and she wondered briefly if he planned to fill it out himself or if he’d explain to her parents that they’d skipped it.
He told her about proteins. She hardly listened. She was, she realized, partially resisting his instruction because she suspected today’s lesson would one day circle back to the particulars of her disease.
Her seventh birthday had been the first big clue. Her new radio-controlled car had collided squarely below her knee, and within a week lesions had formed, hard calciferous growths that protruded just under her skin. After blood tests and scans and physical exams, after bouncing from one confounded specialist to the next, Billy and her parents went to an osteopathologist. Dr. Finley hadn’t needed any tests. One look at Billy’s injured leg, and at the big toes that had been deformed since birth, and he’d leaned forward, ropy black eyebrows knitting together. “You have fibrodysplasia ossificans progressiva.”
You’re growing an extra skeleton and there isn’t any cure.
Billy wished doctors would go about things in a different way, would make it more obvious how batshit crazy the world was. Why not hand out fortune cookies with the prognosis inside? You got cancer, one could read. Or, Rejoice! For this one, we’ve got a cure. Another could say, Uh oh, it’s lethal! And hers would read, Well, congratulations, you might just be the unluckiest person ever: you’ve won the medical equivalent of the lottery, having been born with a disease that only one in two million people get, the result of which is that you’re going to experience some fantastically ridiculous science-fiction-sounding bullshit, also known as Stone Man Syndrome, also known as cell-growth-gone-seriously-fucking-haywire, also known as oops!-no-cure-for-this-one, or hope-you-like-to-ossify, or, Gosh Does It Suck To Be You.
Gustave grabbed at the model kit. “I’m going to make a polymer for you.”
“Just tell me what’s with the food already.”
Gustave’s disappointment was apparent on his face. She scowled at him. Maybe he wasn’t to blame for her not wanting a lesson today, but neither was she. And she could feel it looming now, a sensation she detested, that of feeling sorry for herself.
Changing tactics, she sidled closer to him. “Let’s get out of here? I can’t remember the last time I did something fun.” When he tried to remind her of the trip her parents were planning, she waved him away. “You just said parents.”
Standing up straighter, he scratched the side of his neck. He was so awkward, always. “Maybe we are overdue for some kind of field trip. What do you have in mind?”
“A tattoo parlor.”
“Something science-related, Billy.”
“Teach me about polymo-whatevers and we’ll be golden.”
“Forget it. Let’s just get back to the lesson.”
“What? But you said—”
“You want to get me fired?”
“Hey, Gustave? Did you know DNA is just the code that tells your body what proteins to make?”
Gustave paused, and then quite suddenly, started laughing. When he laughed, he looked like a different person. His large square hands grabbed at the model kit and the textbook, and when his belongings were packed, he looked at her expectantly.
Gustave’s 2001 Volkswagen Golf was parked in front, the color of a tarnished penny. Billy put her hands over her heart and said serenely, “A hoopty fit for a princess.”
“Get in, smartass.”
Billy lived in the suburbs outside of Chicago, and now Gustave drove southwest, away from the city. The expressway had no traffic; his little car seemed to enjoy the freedom even as the engine whined. Billy wore a sundress and combat boots; she eased her feet onto the dashboard and dipped her hand out the open window, letting her wrist flop in the velocity-created wind. She loved this feeling. Anything was possible.
Billy’s most prized possession was a notebook that contained lists running in opposing directions. If you opened the front cover and flipped through the pages, all the stand-up ideas she’d been jotting down for the last three years were listed, some indecipherable, some circled or starred. If you turned the notebook upside down and started from the opposite cover, the pages contained obsessive notes on various comedians: Lucille Ball—facial expressions as the punchline, Louis CK—laughs at his own jokes and it’s not annoying, Richard Pryor—but how to find cocaine in the suburbs?, Eddie Izzard, Sarah Silverman, and on and on … Billy knew for her comedy routine she needed life experience. She needed love, loss, heartbreak, rejection, pain, grief, racism, sexism, injustice. All good comics turned suffering into gold, poked fun at how fat or bald or unhappy or angry they were, how bad their sex life, how ostracized from society. Billy had recently written in her notebook: Seduce Gustave. Must be awkward. Get caught in the act by mom and dad?
When she saw a handmade sign advertising a county fair, Billy yelped and Gustave obliged her, exiting and following the arrows that had been drawn in Sharpie. He parked in a dirt lot and they got out. Large trucks designed to transport barnyard animals were parked near the entrance, next to piles of hay. Billy walked slowly, her lopsidedness not terribly noticeable except to a discerning observer. She might be able to walk for many more years, depending on how the disease shaped her spine.
Inside they passed stands selling jewelry and artwork and food. There was a Ferris wheel, rides that looked designed to make you sick, and a small steam train that circled the fair’s perimeter. A screaming four-year-old, hand held fast in his mother’s, had collapsed to the point of falling and yet was being dragged along, head thrown back and yowling.
“Well?” Gustave said. He was grinning.
Billy pointed at the Ferris wheel, suddenly shy. She flipped her palm up as if to say, “What if?”
Every morning when Billy woke, she began with an inventory of her bones, starting with her deformed big toes, a hallmark of the FOP disease, one of the only signs when you’re a baby that you might have it. Billy’s toes were smaller than big toes ought to be, shaped like miniature thumbs, and they pointed inward. Every morning she wiggled her toes, rotated her ankles, and bent her knees. She’d circle her wrists and shift her hips, cataloging what had changed. FOP spared vital organs but the skeleton of her upper body proliferated daily, tendrils of bone extending across her ribcage, splintering out from her spine, trapping her heart and lungs in a misshapen cage of skeletal coral.
The lesions on her right shin had long since calmed down. After the initial swelling nine years ago, they’d sunk back under her skin, hardened, and settled in. But others had formed, from the flare-ups that occasionally racked her body or from any incident that stressed her skeletal muscles or connective tissues—a bruise, fatigue, a flu shot, or the flu. Now that Billy was getting older, Dr. Finley said it was time for her to understand her disease better, to learn which parts of her body were involved, and be able to describe the mechanism that had gone horribly awry. But Billy continued to imagine her muscles playing Ro-Sham-Bo, the loser saying “ah, well,” before poof! turning into bone.
Her parents were also all too quick to point out: she was a teenager. Billy was sixteen now, but as soon as she’d turned thirteen, her parents started saying she was a teenager. It was as if they’d anticipated the change for years, had readied themselves to interpret every expression, movement, and sound as potentially volatile.
She had been feeling volatile. She’d been wanting a tattoo, for one thing, even though she knew that besides being too young, the process would probably spark painful bone growth. And then there were the berries she’d been collecting from the backyard—which ever since she was little she’d been warned not to eat because of the poison within—now aggregated in a thin jar underneath her bed, red faces pressed against the glass. In case what? She didn’t know. She didn’t want to die, but for some reason the berries had seemed like a good idea, or maybe just a powerful one, a secret that gave her something to hold onto when her parents or the world or her disease drove her batshit crazy.
A tattoo of a bat could be nice, maybe one slumbering, its folded wings transparent and grainy like rice paper.
What Billy told no one is that she hoped to someday wear a ring that never came off.
In the late afternoon everything became a blinding white-blue—the sky, the ground, and everything in between—as if looking at a bright light through the fabric of a comforter. Billy and Gustave wandered. They had partaken in the Ferris wheel, the funnel cake, the petting zoo.
“You’re making excuses,” Gustave said.
“Maybe it’s not G-rated, okay? Maybe—”
“Billy. I know you. You’re fearless. Do it already.”
“Only if you don’t laugh.”
He laughed.
“No, I mean—unless you want to.”
They sat down at a picnic table that was mostly in the shade, facing not each other but the dwindling stream of fair-goers. This morning Billy had written in her notebook: People think: not this body. Not this hair, not this face. They want shiny, glowing, slim, curvy, tall, firm, petite, young, forever. People think: I want. Now she studied the expressions of people passing by—were they happy? were they in love?—but for the most part, everyone wore the slightly cross-eyed look of overstimulation.
“Okay, a blonde, a dolphin, and an accordion walk into a bar,” Billy said. Then, “No, absolutely not—who does that? Does anyone start a routine with a blonde joke anymore? Comedians are rolling in their graves right now. The faces of John Belushi and Robin Williams are pressed up against the pearly gates. They’re screaming down at Earth: ‘You nutwad. What a terrible joke.’
“Speaking of the afterlife, lately I’ve been thinking about it. I’ve been thinking that people should get whatever matched their belief system when they were on Earth. You know, hell, heaven, purgatory, the seven levels of Jannah, whatever—because why not? Who cares? And anyway, you’re dead. But if you’re agnostic … well, if you’re agnostic, actually you don’t get a choice. You can only get reincarnated as some kid’s sock puppet.
“When I was a kid—I mean, younger than I am now, I always had to choose my own punishment if I did something bad. You know, parents, they tend to think that’s a fair thing, that’s a way for a kid to put herself in a parenting situation and hopefully be a little remorseful, but for me it was a totally different story. For one thing, I have a freaking horrible illness. So I get a little rageful sometimes. But for another thing, I am truly demonic if left to my own imagination. I mean, I come up with stuff no one should have to endure. My parents would say, ‘Billy, you left the bathroom light on again,’ and I’d go, ‘Oh, yeah, I see that. I’ll go ahead and lock myself in a shack, set fire to my shoes, and drink my own pee for five days.’”
Billy stopped abruptly. She was out of breath, had rushed through her material, skidded over words, left out important parts. Gustave had laughed at odd moments and more than once wore a puzzled expression. She hated him.
“Now you,” she said.
He looked genuinely alarmed. “But I—”
“Tell me something. Teach me something.”
He looked around, palms resting flat on the metallic yellow surface of the picnic table. At the petting zoo, one goat in particular had taken a liking to Gustave, an animal with spotted, floppy ears and those unsettling rectangular pupils. When Gustave lost his balance, the goat had rested its chin on his knee with an expression that seemed to say all’s right with the world.
“The sky is blue because of the size of molecules in our atmosphere,” Gustave said. “When sunlight comes toward Earth, most of it bounces off and away, but blue light is just the right size. So it travels through. And when there are sunrises and sunsets, light comes at us in a different angle, gets bent at the horizon, so that’s why we see more colors. Red and orange and indigo. The light scatters toward us instead of bouncing off.”
“Why don’t you ever see green?”
He considered this. “I don’t know.”
It was time to leave. While Gustave used the bathroom, Billy stood near a bulletin board on which a few torn flyers and posters were pinned, their edges rattling in the breeze. One photograph had been deliberately retouched to look like it was from a different era, perhaps the early 1900’s, and captured a strange-looking group of people drenched in sepia tones. Pincer hands and protrusions. Extra limbs or lack of limbs. Skin that looked reptilian. The members of the group posed and smiled with their arms around each other as though they’d gathered for some kind of bizarre class reunion. The headline boasted of a carnie circus act featuring “some of the forgotten wonders of the world.”
Billy had once heard someone at the doctor’s office say that the oldest recorded case of FOP might be in the Bible. When Lot’s wife could no longer move from where she stared, it wasn’t because she had turned into a pillar of salt, but because she had grown an extra skeleton. Thousands of years and so few cases had been recorded. Staring at the poster now, Billy wanted what she saw. Even if the whole thing was fake, even if the guy with the reptile skin was actually just some asshole in a suit, this group had each other. They had a personal and collective history.
Billy reached out and slapped her palm against the smiling faces. She took a picture of the poster with her phone and vowed to look them up later.
When Billy was younger, before the ambition of becoming a stand-up comedian had taken hold, she’d been an avid reader of comic books, partially out of a fixation that a person could be secretly destined to serve the good of mankind. Billy used to imagine that she too would one day be charged with a quest for which no one else was suited. Her shoulder blades would grow outward; all the muscles in her back would knit together and ossify; all her vertebrae would scallop and spiral. She would become a new species—like a Marvel superhero, or an X-Men mutant, or a thestral from Harry Potter. Billy used to imagine she’d sprout long light-boned wings and fly away.
On the way home, the setting sun glaring at them, Gustave raised his hand as a kind of shield and whistled an off-pitch version of the Ferris wheel song. He left his car running while they both walked up the path to her house. The front door opened before they reached it: her parents stood in the opening.
“What’s with the seafood? In our fridge?” Billy’s father asked.
Gustave started to answer; Billy loved it when he blushed. Before he got the words out, Billy’s mother made a sound as if discovering something.
“What—” Gustave looked sharply at Billy. “Oh.”
Billy’s mother reached forward with one finger and pressed firmly into Billy’s shoulder. When she released, the white oval turned an angry red.
“Looks like you cooked our kid,” she said grimly.
Gustave tried to apologize, but they waved away his concern even while their faces told a different story. Sun damage didn’t lead to bone growth, Billy knew. You idiots, she thought. Gustave handed them the questionnaire and said goodbye; there was no way for Billy to step over the threshold without also being folded into her mother’s arms.
“You okay, honey?” Her mother patted her gently. She was using that voice Billy hated, the one that made it sound as if Billy were ten and not sixteen, but Billy was lulled, by the fullness of the day and her own exhaustion, so she only nodded, her ear rubbing against the knocking thumps within her mother’s chest.
That night, when Billy was falling asleep, the sheets irritated her calves and crackled under her knees. She smiled in the darkness at the thought of her raw red skin, its tautness stretching over the knob-bursts of her bones. Tomorrow she’d wake and take her inventory; her body would expand like unpacked origami; her wings would unfurl. But in the meantime she was grateful for it, for something so ordinary as a sunburn.
Courtney Moreno’s writing has appeared in LA Weekly and Best American Nonrequired Reading. Her award-winning debut novel, In Case of Emergency, was named Best Books of 2014 by Masters Review, and Best Fall Books 2014 by Huffington Post.
