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Macmillan Childrens Publishing Group


13 Stories Starring Disabled Teens

Edited by Marieke Nijkamp

Farrar, Straus and Giroux (BYR)


The Long Road


THERE IT IS—do you hear it?

Hissssss, shhhhh. Hissssss, shhhhh.

The desert wind. Like a serpent sliding through the stones, or my mother warning me not to speak.

Shhhhh, hush, hushhhh. Say nothing. Reflexively, I press my lips together—but everyone who matters already knows my secret.

I should have kept it better, but it’s too late now.

The road stretches before me and behind. It is littered with camel dung and pomegranate rinds, wet tea leaves and boiled stew bones. Along it, travelers come and go, west to east and east to west, following the arc of the sun.

And north? If I shade my eyes, I can see the desert from whence the winds come, shifting the dunes of the Takla Makan: the Place of No Return. The haze on the horizon is sand in the air. My father says it can scour the meat from the pale bones of the dead. All travelers whisper about the wind. How, if you get too close, you’ll hear it call and bid you come.

I don’t hear my name on the wind—only the sound of the sand. The road we travel skirts the edge of the wide wasteland. Perhaps we are at a safe enough distance. Or perhaps the voices are drowned out by the dull ringing of the tangled amulets strung around my neck.

Chung, chung, hissssss. Chung, chung, shhhhh.

Back in my little garden in Xi’an, I used to love the sound of chimes: bone and bamboo and little bronze bells shimmering in the breath of the breeze. A happy sound. Light as the wind. My heart used to beat to their delicate music as I moved through the flowers, taking air and exercise. The sound would make me smile, except on the very worst days.

I haven’t smiled in nearly a year. I forgot how to, for a long while. And by the time I remembered, on the road, there wasn’t much left to smile about.

The saddle sores on my thighs, the swaying of the camels, and all their beastly smells. The sun draped heavily across my shoulders, the grit between my teeth. Not to mention the amulets I wear. They are meant to protect me, but they only remind me of what I’ve lost. And when I walk, I jangle, discordant: a harsh, heavy effigy of an old sweet song. They are heaped thick on my shoulders, the talismans sitting on my chest like a gui ya shen—a ghost’s weight—and each step is a chore.

One charm is from my cousin, who said she’d pray for me on my long journey. Another from my older sister, who couldn’t look me in the eyes as she slipped the charm over my head. And one from the man who would have been my husband, if the rumors about my bad fate hadn’t spread before our wedding.

The rest of the medallions came from my parents. I don’t have the heart to tell them they aren’t working—especially not after they’ve taken me such a long way from my garden, with so much farther still to go. Besides, would they want to know how I feel? Shhhhh, hushhhh, say nothing. But the truth is a powerful force—relentless and dangerous as the wind. It’s what has pushed us here, like dead leaves to the edge of the desert.

The road we travel is not my father’s typical route—and I am not his typical cargo. He is a silk trader between Xi’an and Dunhuang. Or he was, before. And my mother used to keep our books. She, like I, had never been beyond the walls of the city. This is the farthest any of us have traveled, and we’re not even halfway to Persia.

What will we find there? I hardly dare dream. I want it to be beautiful—but most of all, I want it to be worth the journey. An end to the travel—and to my tribulations. A garden, perhaps, but one where I can flower and grow. But can I, a girl from Xi’an, take root in such foreign soil? If not, what then? I wasn’t thriving in our little garden, either.

I shake the thought out of my head. We are far from that fate and getting farther all the while. And up ahead, somewhere on the road: the point past which it is longer to travel back home than to go forward into the unknown. Already, miles and miles of dust lie between me and my old life. But the distance was not the difficulty—that life was no longer mine. There was a wall now stronger than the one built by the first emperor: the diagnosis.

My parents had risked two doctors to treat me—one we’d known for years, who knew our family and all its secrets—and another who might have had better news. I still think he was the one who let the rumor slip. I only told my sister—and she would never have shared the truth with anyone outside our family, not when it brought her as much shame as it brought me. Then again, my bad fate might have been obvious in my unstoppable tears or my uncontrollable laughter, the unseemly flirting or the weeks spent in bed, the times I went out with coins to spend on rice and came back with ribbons for my hair.

These days, my fate is obvious in the heaped strands of amulets around my neck—but less so, every step we travel. Because in the west, bad fate can be treated.

I hear they don’t even wear amulets there—that the treatments are simple but effective. At least, that’s the claim on which my parents sold everything to make the journey to Persia. I am lucky; I know that much. I have another cousin, back in Xi’an. One I’ve never met—never seen—who herself never sees the light of day. I imagine her sometimes, as pale as the mushrooms that spring up at night only to crack and wither in the sun.

Is her fate as bad as mine? Certainly my fortune is better, because I have a chance for treatment. For freedom.

If we can make it past the Place of No Return.

How long have we traveled? Weeks, months. So far, at least, it has been more tedious than dangerous—or is that only the bent of my mind, convincing me nothing has happened when everything is different? I know I have seen more than I ever thought I would—ugly and beautiful, all thrown together. The green fields, where white herons watch their own reflections till the silence is broken by the jeering laughter of rough men. Or the carcasses of unlucky pack animals, ridden too hard, rotting under the clear and glorious sky. Or the long sweep of poplars to the south of the road, their green arms holding back the wasteful desert.

And the shocking emerald gems of the oases where we stop for the night.

I love the camps, and I hate them. They are a place to rest—to eat—sometimes even to wash away the dust and sweat of the road. But they are also places where traders gather from all corners, and I am not used to so many strangers. They aren’t exactly frightening, but they are much too friendly for a girl with secrets to keep. And their usual questions—What is your cargo? Where are you bound?—are not so easy to answer. And then, of course, there are those who already know what the amulets mean.

The stares were worse closer to home—we’d left in the dead of night to avoid them, but even on the road outside of Xi’an, everyone knew. Since passing Dunhuang, though, the looks have softened from suspicion and scorn to a milder curiosity. But I still remember what it was like—the prickling skin, the chill in my flesh, the dizzy heart-pounding feel of being known as mad.

But there’s nothing for it—at least, not until the journey’s done. For now, night is falling as it always does, and we are nearing the next camp. Miloo, my camel, always smells the water first. I can’t imagine how, when the pungent scent of her own fur still makes my eyes sour. But I’ve gotten to know her signals—the way her strides lengthen when she senses there is food ahead—and so when she starts to stretch, I watch out for the greenery.

Soon enough it appears: a bright emerald burst against the dun-colored landscape. As the sun sinks, we approach the little camp. Nestled in the curve of the spring, squat buildings rattle like dice in a cup. A little frontier town, gambling with fortune on the edge of the world.

“It’s called Niya,” my father tells me. His smile is hopeful—his white teeth strange in his dust-coated face. Then the smile falters a little. “Or at least, that’s what they tell me.”

My father knew his old route like he knew my mother’s face—comfortable in his familiarity but in love anew every time he saw it. I’m not used to seeing him out of his element, but none of us know the way anymore.

I try to smile back, my lips still pressed together. My mother watches me, but I do not open my mouth. At last she sighs. “Do they say whether there are baths?”

“There must be,” my father says. “And lamb and hot bread and pomegranates, too.”

“Flowers in gardens,” my mother plays along.

“And hua mei, singing under the trees,” my father replies, his grin returning.

My parents look at me sideways, waiting for me to join in. This is a game—we all used to play it. A dreaming game, where you give voice to your heart’s desire, and in that way come close enough to imagine it. I don’t dare—not anymore. It feels too frivolous—too risky—so the only sounds are the chime of my amulets and the tread of our camels’ hooves.

The day is cooling under the purple dusk as we make our way into the camp. Tents and yurts and even some shacks spread across the scrubby grass near the bank. Many spots are already taken by travelers who made better time coming from the last oasis, or people coming from the east. Food is cooking at little fires and at a bigger, more permanent kitchen—an enterprising family serving the traders. The smells make my mouth water. Someone somewhere is playing a spike-fiddle, someone else is eating a pomegranate, spitting the seeds into the dirt: pthoo, pthoo.

My father goes to get water, and my mother seeks out the camp cook to inquire about food. I slide down from my camel with a clanging jangle that turns heads.

Shame creeps across my face, but I try to tamp it down. I know what I must look like—my shirt is plastered to my skin with sweat and dust, and the amulets make a thick mat across my chest, like the web of a spider with insects trapped inside. But all of us here are strangers—east and west mingling with a smattering of north and south, and when I take a deep breath, I swear I can taste the moisture in the air. At the very least, I know I don’t smell as bad as Miloo.

I set to making camp—unrolling the oilcloth, spreading the tarp, driving the stakes. I’ve gotten better at it—quicker—though the process still leaves me breathing hard, with the amulets swaying and dragging like a yoke.

Chung, chung. Chung—pthoo!

Chung, chung. Chung—pthoo!

Someone is still staring at me; I can see her out of the corner of my eye—she’s got sun-darkened skin and a mocking smile, half-hidden behind a red fistful of fruit. Her scrutiny makes my skin crawl as the seeds land in the dust near my feet. I ignore her until she speaks.

“What are those?”

She used the language of the traders—east and west mixed together and then shortened, smoothed into sounds we all can manage. But her inflection is eastern—has she lived where I’m heading? I want to ask, but I’ve learned my lesson. My mouth stays shut.

Chung, chung, pthoo. Chung, chung—

“You’ve angered the gods.”

Despite the heat of the fading day, I am suddenly cold. She knows—of course she knows. I straighten up quickly, gaping at her, but she only smiles. I blink once, twice, then flee into the tent.

I do not come outside to eat, and my mother, worried, brings my dinner inside—warm bread with lamb gravy. I see the concern on her face. “What’s on your mind, Lihua?” she asks, and even though we’re alone inside, I’m not ready to tell her. I’m not ready to say anything.

Still, she sits beside me while I eat, her hands in her lap. The ink that used to stain her fingers is fading, replaced by grit and grime under her nails. My mother used to have porcelain skin—untouched by the sunlight. Now it is turning gold in the desert light. Does she miss her old life? I know she must. I do, and it’s my fault we had to leave it. But she never says so, and I never ask. I can’t.

After dinner, we bundle up, my mother and father joking, laughing, but it is forced between them, and I am silent. I am still silent long after they have gone to sleep, long after the spike-fiddler has stopped playing, even after the camels have stopped groaning and chewing. Still, I am awake. The amulets jostle whenever I try to burrow down into the blankets. Finally, just when I’m comfortable, I realize I have to visit the pits.

We passed them on the way in—they’re downwind of the camp and far from the water. The night air is cold in the desert—I can see my breath when I step out of the tent—but I just wrap my coat tighter around my shoulders and start toward the swale.

The moon is bright, and the night is quiet but for the jingle jangle of my shame. A flash of anger—no less fiery for being familiar: I wish I could tear the whole lot of them from my neck and leave them in the pit. But I don’t. Of course I don’t. I want to be well. Even if it doesn’t feel like they are helping.

On the way back to my tent, I walk slowly—carefully—trying to keep quiet. Placing one foot in front of the other—one foot in front of the other—so focused on my feet that I’m startled to find a person in my path.

The girl.

I stiffen as she smiles, but the mockery in her face is gone—softened by the shadows. And with her red-stained hand, she reaches up and pulls something from inside her shirt. The moonlight glints off an amulet.

It’s shaped like an eye, similar to one of my own—an amulet my father had traded for. And the chill I feel now has nothing to do with the desert air. Before I can stop them, the words escape my lips. “You too?”

She nods, and suddenly I have a hundred thousand questions bubbling up on my tongue. I’ve never met another person with bad fate—much less someone who would tell me so themselves. I’ve only heard rumors. Hushed references, memories spoken in past tense, as of the dead, but without the reverence. I stare at this girl—chin high in the moonlight—smiling as though her fate were not a burden. Could I ever be so bold? I open my mouth, but the wind picks up—shhhhh, husshhhhhh—and I hesitate, so she speaks.

“Aren’t they heavy?” She nods to my necklaces and takes my grimace for an answer. “Why do you wear so many?”

I want to answer, but it’s hard to speak, even now. My mouth feels dry, so I wet my lips, then swallow the grit on my tongue. “The more the better, they say.”

“What do you say?” she asks immediately, and I blink at her, considering the question.

“Not much.”

Her lips quirk, but I hadn’t meant it as a joke.

“Who am I to argue with the doctors?” I say quickly. “I just want to be well.”

An expression flits across her face—something I can’t quite catch. “You’re heading west?”

“To Persia,” I say.

She nods, as though she’d guessed already. “That’s where I’m from.”

“What’s it like?”

“Good food.” Her eyes sparkle, but I’m not amused.

“I wasn’t asking about the food.”

She laughs—so loud in the night. Near the trough, the camels shift their weight. “It’s better than in the east, or so I hear. I’ve never been to your country, but I’ve met people who’ve fled. Cursed ones, like we are,” she adds, but in her voice it is a sisterhood rather than a conspiracy. “They come from all around, if they can afford to. All for the treatment.”

“And … what is the treatment?”

“Clean living,” she says simply. Then she looks me up and down. “Bad hygiene insults the gods.”

My eyes narrow—I get the impression she’s teasing me, and I’m suddenly very aware of the stains on my shirt and the sweat in my hair. Then again, it might just be the limits of our shared language—the trader’s tongue is a narrow bridge. And could that be why the amulets haven’t worked? “What does it mean? Clean living?”

“Exercise. Baths. Fresh air. Fruit. Easy enough to keep up on the road.” She looks at her fingernails, still red with juice. “Except for the baths.”

“Why did you leave?”

“Money,” she says simply. “We’re taking a load of linen east. Clean living isn’t cheap.”

“I know that.” I press my lips together, remembering all that we had to sell to come this far. How much farther did we have to go? “How long does it take?”

“What do you mean?”

“The treatment. Till you’re cured.”

Her eyebrows lift like wings. “Cured? No. There is no cure.”

“What?” My stomach twists. “But I thought—”

“There is no cure,” she says again. “The treatment is forever.”

“Forever?” I feel dizzy, so I sit heavily on the grass. My amulets clang. She kneels down beside me—a soft hand on my shoulder.

“Not so terrible, is it? At least, not as terrible as it could be.”

“But I’ll never be normal.”

“Normal?” She laughs. “What is that?”

I look at her, disbelieving—but in her face, I see something reflected: a memory of something else, something terrible. What else has she seen? Shhhhh, hushhhh. I look out at the desert, the sand sliding on the dunes, and the long road, silvered by the moon. My garden is back there somewhere. I’ve never felt farther from home, though we’re not even halfway to Persia.

“Didn’t you have another life, before all this? Something you want to go back to?”

The girl cocks her head. “It is all my life. Just different times.”

My heart slows. Perhaps we don’t have much in common after all. Suddenly I am so tired. I feel myself sinking into the sandy earth. Desperate, I look for hope. “Does it help, at least?”

“The treatment? A little.” Her voice is much softer now—she reaches out and brushes one of the amulets on my chest. “More than these do, anyway.”

“Then why do you wear one?” I say quickly. Then I feel it—a flush in my cheeks at my own rudeness. It’s been too long since I spoke—I am out of practice.

The girl only smiles, tucking her own amulet back into her shirt. “Because even if it doesn’t work, it reminds me that someone I love wishes it did. You must have a lot of people who love you.”

I look down at the mass of necklaces and take a deep breath under their weight—chung, chung. “This isn’t how I want to be reminded.”

The girl shrugs, as though she couldn’t say either way.

“Do you want to know what helps me most? More than amulets, more than clean living?”

I look up at her then, meeting her eyes. “Yes. Please.”

“Talking. Finding others like me. You’ll meet more on the journey.”

Is she lying? I consider it—do I feel better now, or worse? Worse, knowing there is no cure. But I would have learned that eventually. And it is better knowing I’m not alone. Still, I don’t know if I’m ready to tell her that, not just yet. Instead I make a face and grip the strands of my necklaces. “If this is a journey, I am a pack animal.”

“Let go of what doesn’t work, and find out what does. Try the exercise, maybe.” She wrinkles her nose. “And the baths.”

I laugh then—the first time in a while—and the sound is too loud in the dark. Camels shift on their feet, and the cool air rings. “Have to get past the Takla Makan first.”

“The garden of the desert,” she says then. “We named it after the poplars, you know. Takli.”

I frown at her. “In Xi’an, we say it means the Place of No Return.”

“Taqlar?” She shakes her head and helps me to my feet. “The sound is similar, but the meanings are very different.”

* * *

The next morning I look for the girl, but I can’t find her. I wake slowly, eat slowly, pack slowly, but it is still early when we have to leave, and she has not yet come out of her tent.

Did I only imagine her, or will we meet again on the journey? If we do, I will have to ask her name.

The sun is bright but not yet overwhelming as we leave the oasis and travel down the road. Our shadows fly before us like arrows, as the camels fall into their steady pace, Father first, then Mother, and me behind.

Chung, chung, chung, chung. As we travel, I work my fingers into the knotted tangle, pulling one of the strands over my head. A piece of carved bone, warm on my palm. The piece my sister gave me. I bite my lip as I remember her expression—her eyes everywhere but on my face. As though what I had might leap through the air and take her by the throat if she looked me in the eye. This is not a memory I want to hang around my neck. And as the camel walks, I let the charm slide free, down into the sand.

Chung, chung, thump.

The next is a smooth wooden frog. Had I ever wanted to marry the merchant? Or was I only wedded to the idea of the life I’d expected?

Chung, chung, thoomp.

One by one I lift the amulets off my shoulders—a bit of brass, a rounded stone, a silk packet of faded herbs—and as they fall away into the dust, I am lighter with every step. I take a deep breath of fresh air—not better, not yet, but freer. I pull them off, piece by piece, lifting away the weight, until there is one left—one from my parents, shaped a little like an eye.

That one rests against my heart—a memento of their watchful care. I feel so light. A laugh bubbles up on my tongue, and Miloo senses it like she senses water. She stretches her long legs with a ridiculous groan, and I am laughing in earnest now as the wind takes my hair. Suddenly we are flying west as the road stretches away before and behind, and all I can hear is the sound of my heart racing.

“Lihua!” My father’s voice tugs me back; I pull on the rope and Miloo slows. Using the reins, I turn her in a circle to wait as my parents urge their own camels toward me. My father’s brow is furrowed at first, but a smile tugs at my mother’s lips when she sees my own. “Where are your amulets?” he calls, but he has already turned his eyes to the long road behind us, as though he knows I will not answer.

“I only need one,” I call back, and my voice is rusty but loud. “The others slow me down, and I’m eager to get to Persia.”

His head snaps up, and suddenly he is the one at a loss for words. But my mother kicks her camel forward, till she is eye-to-eye with me. “Understandable,” my mother says carefully. “What do you think we’ll find there?”

“Good food,” I say impulsively, and my father laughs then.

“Peacocks, too,” he adds. “And fountains.”

“Beautiful baths,” my mother says with longing.

“And people like me,” I add, and their smiles only deepen as they catch up. I take one last look east—back toward Xi’an—before I turn to join them, side by side as we journey on the long road.

Copyright © 2018 by Marieke Nijkamp