This Is the Story of You

by Beth Kephart

  Every Wednesday, this is how it was—cocktail day. Look up Elaprase, and they’ll tell you this: It’s a purified form of human iduronate-2-sulfatase, shown to improve “walking capacity,” shown to reduce “spleen volume.” Ask me, and I’ll explain: It’s the best shot we have at Jasper Lee not getting worse. The Elaprase does my brother’s enzyming for him. It costs hundreds of thousands. My mother drives. My brother sits. The government pays.

  Which is the story of us, the Banuls, and if you loved a brother like I love my brother, you’d learn the hyphenated language, too. It’d be the only way you could ever think of to make that hard part of him part of you. To share it, somehow. To say, best as you could, “I am in this with you.”

  Wednesday. Mickey was making breakfast, and Jasper Lee was in his bed, lying there beneath the model planes that Deni and Eva and I had found as kits and brought home and assembled and glued and painted and hung from transparent strings thumbtacked to the ceiling. By his door were his wooden canes, which I’d painted in candy-cane colors. On his sill was his tin soldier army, which I’d found tossed in a can at the White Elephant. His special-size Velcro shoes for his special-size feet were, as always, beneath his bed. His curtains were closed, the curtains that Mickey had sewn from remnants she’d found—fabric cars, fabric adventures.

  And there, on the bureau, nothing but sand. No mirror (“Be gone,” Jasper Lee had said). No brush or comb (“You kidding me?”). No Haven paraphernalia (“I have some pride.”). But sand, yes, film canisters of sand—eBayed out of its native habitats, sent by way of first-class mail, labeled with a chunky marker on masking tape. Jasper Lee had Corsica sand; Smith Mountain Lake sand; Cecina, Italy, sand. He had sand from the South China Sea and sand from Masaya, Nicaragua, and sand from the islands of Hawaii. He had canisters of chip, flint, spark from all over the world, and he had expertise—decipherings and decodings about the magic life of sand. Sand as interlocking crystals and three-armed sponge spicules. Sand as star shapes, heart shapes, tiny baby shells. Sand as micro sea urchin spines, rocking dodecahedra, precious garnets, feldspar, magnetite, quartz. Sand as fish bones, sand dollars, mica, forams, shipwreck dust, shark teeth, and broken dinner plates.

  “Think about it,” Jasper Lee said. “The more you knock around a grain of sand, the smoother and more polished it becomes. The heavier the wave, the more powerful the crystal. Trample it, pound it, toss it, scrape it, dig it, build it, crush it, but what have you done? You cannot defeat sand. Sand is victorious. Sand washes in, sand washes out, sand goes its own which-ing way.”

  Sand was what Jasper Lee knew. Sand was what Jasper Lee owned; it would have been my brother’s Project Flow—Jasper Lee, who, in the early part of the sunny days, caned his way through the house and out the back door into the Zone, toward the gangplank Mickey had built to ease the path up and over the dunes. The gangplank we arranged after every storm and at the start of every year.

  Captive coming, my little brother would say. Captive on his way. Stopping and standing at the top of the dune and looking out to the sea. Calling it high tide or low, even though Mickey and I already knew. The tides. The sand. The birds. The salt. He’d drag his body out there in the morning chill and find his place to be. He’d drop down beside his bucket, shovel in, watch the seagulls scatter and return, the little pipers. He’d say, Don’t run off, and sometimes I wouldn’t, and he’d pull his fingers through the sand, let that sand shimmer down to earth. His thick fingers. Those sandy grains. The lock and interlock of my brother, weather, time.

  We’ll build a castle, he’d look up and say to me. We’ll fortify.

  My brother had plans. He had plans and sand vocabulary. The best castles ever built were the ones that he designed. The best sand ever caught was the sand that he curated. The best soul on the planet was him. I might have been medium at most everything, but I had arrogance all over me about my brother, Jasper Lee. He was the best brother ever, and today was cocktail day, which was also scrapple day, though I was a sunny-side-up girl myself.

  “Hey,” I said, when I came downstairs, dressed for school and for the sun.

  “Morning,” Mickey said.

  She had her apron on, her faded jeans with the ripped hems, her painted T-shirt and tie-dyed flip-flops. Her hair had been thickened by the scrapple steam, and there was heat behind her freckles. She was tall and skinny, long dark hair with blunt-chopped ends and little ribbons of gray near her face. Mickey’s shoulder blades were her most memorable part. No matter what she wore or how she stood, those two back wings angled out. They were where and how she stored her strength, which she needed plenty of; everywhere you looked there was proof of that. The basket of unpaid bills by the silver breadbox. The Post-it notes on the refrigerator. The calendar that she’d thumbtacked to the kitchen wall—Jasper Lee’s doctor appointments, Jasper Lee’s therapy sessions, all the Mickey gigs that Mickey did to try to keep our family’s engines purring. Mondays and Fridays: Front Desk at the Gray Lady Nursing Home. Tuesdays and Thursdays: kiln duty at the pottery shop. Saturday afternoons: care for the O’Sullivan triplets. Sunday afternoons: some seamstress work, if she could get it. Mickey searched, snagged, took what she could. She marked it down on the calendar. She stuck the dates to the wall.

  “Can I convince you?” she asked that day, meaning the scrapple beneath the steam. She was the kind of pretty the people who knew her saw best. Jeans shaggy, cuticles torn, hair just hanging, a few odd strands of gray—maybe that’s how other people saw Mickey. But that’s not how we saw her, Jasper Lee and me. We saw everything Mickey did for us, and all the ways she loved, which included Wednesday-morning scrapple, which is also called pon haus, which has been defined, by the Wiki, no less, as little more than mush. Food taxonomy.

  “Not a snowball’s chance,” I said, yanking out my own frying pan and plopping it down. I took two eggs from the carton. I turned on my fire. I swiped a pad of butter. I sunny-sided, taking my place beside my mother. We kept our backs to the turned-off TV.

  “Finish the scrapple and I’ll get him up?”

  “Finish my eggs,” I said, “and I’ll get him.”

  I gave her my spatula, my flame, my perfect yolks. I left her like that—manning two pans, and two fires. There was no storm in our sky. Only blue. Only light. Only the smell of all the salt in the sea.

  I would wish not. That’s what my little brother always said, his Wednesday mantra. “I would wish not. Please.”

  He would say it lying there on his bed, in the crack of light. He’d say it as I pulled his curtains wide, those fabric cars running a wavy north and south. I’d open his window, let in the breeze. I’d get his clothes out of the dresser drawer, toss them his way. I’d sit on the corner of his mattress, low to the floor, especially arranged, and nudge him on the arm.

  “Hey.”

  “I would wish not,” he’d say.

  “Please?”

  I’d sit on the edge of his bed as he squeezed his gray eyes shut, so many versions of wishing. I’d watch him and see everything he struggled with—walking a straight line, pedaling a bike, digging a sand castle, balancing a spoon, keeping his tongue inside his mouth, staying unangry even if his hands were a little bit like claws and his face kept flattening. Mickey, someone ironed my face. I’d sit there and try to see an ounce of Mickey in him, and then I’d try to imagine his dad, which was not the same as trying to imagine my own—different people and no photograph that I’d ever found of either. I’d never asked Mickey which one of her children’s fathers she’d loved the best, or if she’d loved them, even, because what kind of question is that, and how would it not make her sad, and did I even want the answer?

  My dad had been a deserter; that’s all Mickey had said. Jasper Lee’s dad had been one of those, too, gone after the pregnancy news and too lily-livered to ever show up here and say, Hello and how are you, and how is our son, you need something, Mickey? I never met any man I could call
Dad. But in the morning, when my brother wished not, I tried to see a father in my brother’s bones, in the genes he’d left, in the enzyme he’d been robbed of. I tried to see a dad, but all I could see was a kid who wished not for a machine and a hospital bed, a kid who would give anything at all to be medium smart, medium blond, medium fine, school pic after ordinary school pic.

  Medical history of my brother in a nutshell: Adenoids removed to help him sleep. Bilevel positive airway pressure machine—BiPAP—to help him breathe. Spine permanently curved because his fragile bones prevented a fix. Hernias removed, and then more hernias.

  If you need a reason not to complain about your so-called problems—the B on your Algebra 2, the tear in the seam of your jeans, the bruise above your heart, the overkill worry of your one best friend and the incredible naïveté of the other, the fact that Mario never notices you, that he sings baritone past you, that he’s short and he never looks up—then I invite you to imagine my brother. On Wednesdays he wished not, and would you not, too? Wished not to rise, not to be driven, not to be hooked up, not to be cocktailed, not to be Elaprased. In our house by the beach on the island of Haven, Wednesdays were Wish Not. We practiced the religion of persuasion.

  “Come on, little brother.”

  Groan.

  “Open your eyes.”

  He opened his eyes.

  “I’m skipping today for tomorrow.”

  “Tomorrow will be here in no time.”

  “Maybe for you.”

  “Maybe for you, too. Someday.”

  “Maybe,” he said. “Yeah.”

  The breeze through the window took his planes for a spin—the barnstormer, the Fokker, the Sopwith Camel. They went one way and then snapped back, and I thought of the day that Deni and Eva and I had hung them there, Jasper Lee lying on the bed beneath us while we cut the nylon string with our teeth. “Works of art,” Eva had said.

  She had twisted her hair into a dozen braids. She had stood there, on my brother’s bed, craning her neck, looking up. Then she’d stepped off the bed and lay flat on the wide-planked floor. “Your planes,” she’d said. “They fly eternal. No storm will ever reach them, no quake will ever fold them, no continental shelf will ever take them down, they will live on and on. Eternal,” she’d said again. She said it in that small but lovely voice she had. She said it with emotion. She said it as if suddenly she could see the future, too, and not just stratospheres of once. Deni and I stood on the trembling mattress. Jasper Lee lay there flat. We heard her voice. It echoed like prayer. I looked down and my little brother was crying.

  Eternal. What a word it was, to a boy who might not live to be adult.

  “Come on,” I said again that Wednesday. Nudging him, picking his clothes up from one side of the bed and placing them closer to where he could reach them.

  He lay there. I sat there. We felt the breeze, both of us; heard the sound of someone talking on Old Carmen’s radio.

  “She wearing her boots?” Jasper Lee finally asked, closing his eyes again.

  “Guess so.”

  “She fishing?”

  I turned, strained, looked out the window.

  “She’s getting started. You hear that?” I said.

  “What?”

  “Mickey’s making your scrapple.”

  “Scrapple is gross.”

  “I know.”

  “You’ve got to tell her.”

  “Tell her what?”

  “That I’m not a fan of scrapple.”

  Every Wednesday I made the promise. Every Wednesday I broke it. I knew what Jasper Lee knew—that Mickey needed the scrapple more than Jasper Lee wanted scrapple. I knew what I couldn’t fix—that she needed to believe she could do something more for her second child than what the doctors and the Elaprase offered.

  Jasper Lee would always be crooked. He would always be fragile. He would never be graceful. His tongue would always be too big for his mouth. Jasper Lee would always be the person people could not see first, because people see what they want to see, at least in a quick and judging first glance. Mickey hated this about people. Mickey hated it for her son. She made him scrapple because making scrapple was active, it was one of the ways that Mickey loved him out loud.

  “Just go with it, all right? Get up?”

  “I’m getting up. Can’t you see me getting up?”

  He pulled the sheet away with the best of his two hands.

  Then he turned in his bed.

  There’s no traffic to speak of off-season at Haven. There’s hardly any traffic on the bridge. But there’s mainland traffic on the way to Memorial, and Mickey did her best to beat it. That day Mickey had taken her apron off and combed her hair. Jasper Lee had caned his way down the hall, out the door, over the pebbles, to the car. I’d waved goodbye and gone inside, up the steps, into my room, when my cell phone rang, and it was Deni.

  “She’s at it again,” she said, no hello, no stop. “I was walking Cinnamon Nose, right? By the beach, right? And there were Eva and Shift out on the rocks.” I thought of Deni and her Bernese mountain dog, prettiest dog I’d ever seen. Dog had a good leash yank in him. Cinnamon Nose made spying tough on Deni, but she was keen on practicing the art.

  “Which rocks?”

  “South end.”

  “What time?”

  “Early.”

  I was putting my bracelets on, my eleven earrings. I was slipping the key around my neck, touching the bruise it left. I was pulling the ponytail higher on my head and checking the mirror and feeling the breeze through the window. I was listening but I was distracted, too—remembering the look on Jasper Lee’s face when Mickey had backed her Mini Cooper down the pebble drive. His eyes were everlasting gray. The cherry-red Cooper with the dragging back fender was headed off toward the bridge—Mickey’s hand held high and Jasper Lee’s hand held low, waving their opposite goodbyes.

  “Mira?” I heard Deni now. “You listening?”

  “I’m listening.”

  “You sound like you’re miles and miles away.”

  “How could I be miles and miles away?” I asked. “In Haven?”

  “Don’t you care what happens to Eva?”

  “Of course I care what happens to Eva. But she hasn’t been kidnapped, Deni. She’s met someone new. This is what Eva does.”

  “I don’t have a good feeling.”

  “Do you ever?”

  “He came out of nowhere. He only has one name. Who shows up in Haven to go to Alabaster, middle of September?”

  “A transfer,” I said. “I guess.”

  “Eva’s already in, whole hog.”

  “Don’t go crazy on her, Deni.”

  “I’m not crazy. I’m just careful.”

  Of course, Deni wasn’t completely wrong. Eva was an overtruster. She’d bring every ball of furry-stray home. She’d set up lemonade stands for the feeble. She’d think that she could cure the brokenhearted with her triple-flavored taffy. Eva was a bleeding heart and her heart was bigger than two Grand Canyons. Loving Eva was keeping an eye on her. It came with the package.

  Deni needed needing most of all. We loved her in spite of herself.

  That morning, Deni kept talking until she stopped. I mean: She kept talking and I went down into the kitchen to start cleaning up, water running, pan scrubbing while Deni talked and I uh-huh’d in the pauses, and then we said goodbye. I’d left my backpack upstairs and so I hurried up to get it—past the paintings on the striped stair wall and past the clay pots that sat one pot per step, each with a face that Mickey had carved at Sandy Sacks, the community art center where she worked. She’d made the pieces in the off hours when the bisque was cooling in the kiln. She’d brought each home, and she’d laughed at them, and we’d tried to guess who she’d been thinking of when she carved the nose, the brow, the grin. Not telling, she’d say. Secrets
are secrets. She used oxides instead of glazes to give the creatures color. Their teeth were gray. Their eyes were hollow. We called them gargoyles behind her back and then in front of her, but she wouldn’t give in, wouldn’t tell her secrets.

  Just people I knew, she’d say. Acquaintances.

  In my room, the breeze was moving the curtains around, the paisley bedspread, the skirts in the closet. I rolled the sliding door open, brought my cactus inside, placed it on the bureau beside the photo of my aunt. Then I went back out onto the deck and took one last look around for dolphins, noticed the waves coming in at an angle, no Old Carmen. I’d have been late for school if I stood up there any longer. I’d be getting a call from Deni first, and then a reminder from Mr. Friedley. So I stepped back inside. I bolted the door. I grabbed the backpack and my skates and headed down the stairs.

  At the landing I heard a sound in my brother’s room. There was something stirring the model planes—the breeze through the shingles and plaster. I stood for a moment and watched the planes fly. I thought of Jasper Lee, wishing not. I thought of Mickey behind the wheel of the car, the hair she combed getting tangled at once because she liked her window down.

  I didn’t see the forgotten Bag of Tricks until I was halfway gone. It’d be a long day at Memorial, I thought.

  And felt a sudden wash of sorry.

  Too late for homeroom. Too late, even with my skates keyed to my Skechers and my backpack aerodynamically strapped and no sandwich in the Ziploc; the morning had run out of time. I was Bonnie Blair, crunched at the waist. I rollered north toward the sanctuary, took some air over the curb, pumped until I was up to steady speed, and the breeze was strong, it was working with me. At the broken shells of the parking lot, I stopped, unkeyed my skates, then ran, quiet as I could over the wide white crunch.