by Ali Standish
“You are a perfectly healthy young lady,” Dr. Howard says. “Why don’t you get dressed again, and then we’ll talk? Mr. and Mrs. Talbot, maybe we can step out into the hall for a moment.”
Notice how she didn’t exactly answer my question?
Yeah. Me, too.
I get dressed as fast as I can. Everyone is still gone when I pull the curtain back again. The door is open a crack, though, and I peer out.
They’re all standing in the hall. Dad’s arms are crossed against his chest as Dr. Howard speaks. Mom’s eyebrows are knitted tightly together. Then Dr. Howard says something, and I see Mom’s mouth drop into a little round O.
I can read that shape as easy as words.
It’s O as in Oh, No.
O as in Uh-Oh.
Or like vitilig-O.
14
Frequently Asked Questions about Vitiligo
My hands shake as I read the pamphlet for the third time. Rain beats down against the windshield, and Dad has the wipers going full speed as we turn off the highway.
What Is Vitiligo?
Vitiligo is a common condition that causes depigmentation of the skin. It occurs when an overactive immune system begins attacking the cells that create pigment, or color, in the skin. The condition generally begins as small pale spots, often on the hands, feet, or face. These spots can grow into larger spots and merge with others to create patches of pale skin. Spots or patches often form symmetrical patterns on the body, so a person with vitiligo on her right arm is likely to have it in roughly the same place on her left.
Dr. Howard said I was right about the spots on my toes and around my elbows and also above my eyebrows. She found one on the back of my neck that I hadn’t noticed before, too. My face is the part I’m most worried about. I can hide my knees behind jeans for most of the year and my neck behind my hair. And arms are just arms. But my face . . . is my face. My face.
Except it doesn’t really feel like mine anymore.
How Did I Get Vitiligo?
As with many autoimmune diseases, it’s unknown what causes some people to develop vitiligo, though it is suspected that there can be a genetic factor, and it can be triggered by stress.
Dr. Howard explained that a “genetic factor” means that vitiligo can sometimes run in families. Dad reaches a hand over and rubs my back. He doesn’t have vitiligo. Nobody in my family has vitiligo. And Lily’s the one who is stressing over all her college applications, not me. So why am I the one who got it?
Is Vitiligo Dangerous or Painful?
Vitiligo rarely causes symptoms besides skin whitening. It is not painful, dangerous, or contagious. However, the condition causes many sufferers psychological distress, which can lead to social anxiety or depression. Therefore, it should not be considered simply a “cosmetic” condition.
My eyes keep floating back to the sentence about psychological distress. (Which can lead to social anxiety or depression.)
I really wish they’d left that part out.
I know what depression is because Gram said Gloria was depressed for a long time after her husband, Bill, died. She was so sad that she started sleeping all the time and skipping garden club meetings. She even forgot to string the Christmas lights in front of the town hall.
Gram told me she and Ruth had to drag Gloria to the doctor, where she got medication and therapy to help her feel happier again.
I don’t want to ever be that sad.
But then I think about the pictures I saw online. People whose faces were two totally different colors. People with white patches all over their bodies. I bet they get stared at a lot. Like when Lily broke her foot skiing a few years ago and had to be on crutches afterward. Wherever we went, people would always follow her with their eyes, like they were wondering what was wrong with her.
Lily loved the attention.
But Lily only had to deal with it for a couple months. I bet having people stare at you your whole life would make you sad and anxious. You would probably want people to just treat you like everyone else.
What Is My Prognosis?
The path of vitiligo is impossible to predict and occurs differently in every patient. Your spots or patches may stay small and be confined to one area of the body, or they may continue to spread, covering much or even all of the skin. Spreading can occur rapidly and stop abruptly, or it can occur slowly over a long period of time.
If my white patches keep spreading, people might be staring at me for the rest of my life.
If I spent my life being bothered by what other people thought of me, I’d never get anything else done, would I? Gram says in my head.
But Gram had perfectly even, dove-pale skin. Snow White skin. People only looked at her funny sometimes because she chose to dress differently, with her long dresses and her parasol. I don’t have any choice about whether my vitiligo spreads or where it goes. I’m like a tree with vines wrapping their way slowly around me, and nothing I can do to escape their grip.
What Are My Treatment Options?
There is no cure for vitiligo, but there are treatments that can slow its progression and can help some patients to regain pigment. These include creams and light treatments. Your doctor will help you determine the best course of treatment for your condition.
As soon as Dr. Howard had officially diagnosed me, Mom started quizzing her about treatments.
“Many people decide not to treat this condition at all,” Dr. Howard told her, glancing at me. “But certainly, there are treatments to explore if Emma would like to.”
Then she and Mom talked for a long time about all these different creams and light treatments where I would go into this stand-up booth and have a specific type of light shined on me. Something about that kind of light can sometimes help bring color back to people’s skin.
I knew I should be paying attention—it’s my skin, after all—but it was kind of hard to because they started speaking Science instead of English, and Mom kept interrupting with questions every time Dr. Howard was starting to get somewhere.
She and Dr. Howard finally decided that twice a day, I will put this cream on my white spots to help the color come back and try to keep the spots from spreading too fast. And I’ll come back to the office twice a week to stand in the light-box thingy.
Then Dr. Howard stood to go. “Do you really think this stuff will work?” I asked suddenly. “I mean, make my skin normal again?”
“I’m not going to lie to you, Emma,” she said. “For some people, treatments work really well. For others, vitiligo is tougher to treat. Sometimes it takes a while to find what works. But maybe . . .” She hesitated, thinking. “Maybe you can start by rethinking what you mean by ‘normal.’ Between you and me, I think normal is pretty overrated anyway.”
I mustered a small smile because she sounded a lot like Gram.
Still, I think I’d rather have my old skin back.
But that’s the thing . . . I don’t really get to choose.
15
Dad clears his throat from the driver’s seat. “Are you okay, Butterfly?” he says, voice raised over the rain.
“I could be better,” I reply honestly.
“Well, I know it’s not what we were hoping for,” he says, “but I have to admit I feel kind of relieved.”
“Relieved?” I ask, turning to stare at him.
“Relieved,” he says again. “Like Dr. Howard said, you are perfectly healthy. Your vitiligo isn’t going to make you sick. You’re going to be just fine.”
“I guess that’s a bright spot,” I say. “Actually, there are a lot of bright spots.”
I point to white speckles on my elbow. “Get it?”
Dad hesitates, then chuckles. “That’s my girl,” he says. “With that attitude, you’ll be feeling great again in no time.”
Except I mostly just made the joke for Dad. And despite what he says, I do feel sick. My insides are all trembly, like I’m coming down with the flu.
When we get home, I go straight u
pstairs to change my clothes. Mom, who beat us there, watches me track mud up the stairs and doesn’t say a thing.
Boomer is on Gram’s bed, and I think he has finally given up on her coming back again, because he doesn’t cry when he sees that it’s me and not her. He just lifts his head and wags his tail. I close the door behind me and change into my pajamas, even though it’s still just afternoon. I nuzzle my face into Boomer’s fur and shut my eyes.
But that’s no good, either, because when I close them, all I see is the sad shape of Mom’s face, standing out in the hall with Dr. Howard. I don’t want to make Mom sad. And I don’t want people feeling sorry for me, or staring at me.
I want to be Emma, the girl who reads a lot. Who lives in Lanternwood. Emma who hangs out with Fina and Ruby.
I don’t want to be Emma, the girl with vitiligo.
I take a huffy breath, try to tell myself that I’m being stupid. It might not get any worse. It might have already stopped spreading, even. And if it does keep spreading, well, it’s like Dad said. It’s just skin, isn’t it? I should feel lucky it’s not something really bad, like cancer or some rare flesh-eating bacteria.
Except I don’t.
I open one eye, pull my feet to my chest, and examine the white spots on my toes. They aren’t exactly spots anymore—more like patches. And the patches aren’t exactly white. Not white like a fresh piece of paper. They’re creamier than that. Mom would probably call it eggshell or pearl. But the color is still miles away from the rest of my skin. Like a puddle of milk spilled on Gram’s kitchen table.
I’ve always liked my skin just the way it is.
You, Emma, are the color of afternoon light settling on the trees in the Spinney, Gram had told me, and I had been proud. But now, for the first time, I almost wish I hadn’t inherited Mom’s complexion. That I’d inherited Gram’s skin color instead. Then you would barely be able to see a difference between my spots and the rest of me.
I squeeze my eyes shut again and try really hard not to think for a long time. So long I must have fallen asleep, because the next thing I know it’s getting dark outside, and there’s a knock at my door.
“Emma?”
It’s Lily.
“What?” I call.
“Can I come in?”
The last thing I want is for perfect Lily to walk in here and rub her perfect skin in my face. (Seriously, she’s never even had a pimple.)
“No,” I say. “I’m getting dressed.”
“Oh,” she replies. “Okay. Well, um, dinner’s ready.”
I’m not hungry, but I know Mom will just barge in and make a fuss over me if I don’t eat any dinner, so I drag myself out of bed.
Downstairs, Mom has already piled my plate high with chicken parmesan and garlic bread. My favorite dinner.
“How are you feeling, sweetheart?” she asks as I slump into my usual seat.
“I’m okay,” I say. “My stomach doesn’t feel very good.”
I force down a mouthful of pasta.
“Well, I don’t want you to worry, all right?” Mom says. “I read that treatments work best on younger people. And there are other options, too—”
Dad clears his throat and shoots Mom a warning look.
Have you ever heard the expression “if it ain’t broke, don’t fix it”?
Yeah, well, not my mom. I don’t think she ever saw something she didn’t think needed fixing.
And now that something is me.
I can already feel her getting all obsessive like she does sometimes. Like she is about Lily’s college applications, which she asks about every night.
Part of me is really thankful for Mom, because I do want my old skin back, and I know not all kids have parents who would pay for those treatments. Not all moms make chicken parmesan when their kids have a bad day. I know that.
But part of me just wants her to say that no matter what happens with my vitiligo, I’m going to be perfect, at least to her.
“All I’m trying to say is that we’re not going to let this thing get the better of us, all right?”
“Sure, Mom,” I say. Across the table, Lily is staring at me hard. I glare back at her, and she drops her gaze.
Mom smiles at me. “That’s my girl. Now, Lily, how’s the personal statement for Yale coming? Is your new draft done?”
I eat in silence until I’ve shoved down as much as I can stomach. Boomer sits beside my chair, looking hopefully at me. I sneak him a piece of chicken. A giggle escapes my lips.
“What?” Dad asks, raising an eyebrow.
I lean down and stroke Boomer’s head, black dappled with spots of ivory.
“Nothing,” I say. “It’s just, I guess I’m going to look a lot more like Boomer from now on, huh?”
It’s not funny, really. I just needed to laugh about something or else I’m going to start crying. I thought making a joke might help lighten the mood, like it did in the car with Dad.
Instead, Mom puts her fork down on her plate. “Oh, Emma,” she says quietly. “That’s not very funny. And don’t feed the dog from the table, please.”
Then she gets up and sweeps our plates away.
I guess dinner is officially over.
16
The next morning, I wake up early. I lie there until the first crescent of sunlight appears on the floor of my bedroom, like a seashell washed in on the tide.
I can’t go back to sleep, so I make myself get dressed and brush my teeth without looking at my reflection once. Then I grab the leather journal and slip out the door, Boomer tip-tapping close behind me.
We walk down High Street, passing the silent church. The first birds are starting to twitter sleepily in the branches above us, and the only color so early is the first bits of scarlet dappling the trees.
For the first time this year, I feel autumn in the air, hanging just out of reach. A chill crawls up my arms. Of course I didn’t think to bring Gram’s sweater.
I break into a run as we pass the orchard, like if I pump my legs fast enough, I can outrun this thing that’s happening to me. We fly down to the meadows, and by the time we reach the Spinney, I’m not cold anymore, and Boomer is panting happily.
The moss under my scuffed boots glitters with dew, and there is a threadbare carpet of golden leaves beneath the sycamore tree. A raven caws from its branches.
I creep up to sit on Throne Rock, flipping through the journal to the new chapter and rereading it once again. Ivy in the moonless forest, keeping watch for the witch. The woman in the white cloak appearing below her.
I still don’t know what to write next. I only know that I want to disappear into the pages of the journal, to escape the pit in my stomach that’s been there since Mom took me back-to-school shopping but that has become much heavier since yesterday.
So I turn to the first blank page and pick up the pencil again. I tap the eraser against the page for a few minutes, thinking.
Slowly, I write down a few words.
Then a few more.
And then the pencil races along the page, the Spinney flickers out of sight, and I find myself back in the story.
For many weeks, Ivy refused to set foot in the forest. Though it hurt her to be away so long, she was too frightened to return. For though her gran insisted that the woman in the white cloak had only been a figment of Ivy’s imagination, Ivy knew what she had seen.
After the winter’s snows had melted away, Ivy awoke one morning to find a weight on her feet. She looked down to see a bundle of fur.
“I came across him begging for scraps in the village,” said her grandmother.
Gran insisted the creature was a dog, but Ivy thought he looked more like the pictures of wolves she had seen in fairy books.
“He’s yours,” Gran said. “He won’t let any harm come to you. Now you can return to the forest, you see?”
Ivy decided to name the creature Shilling, for his coat was silver as a coin. It shone so brightly that sometimes Ivy suspected it was made of starlight.
With Shilling by her side, Ivy soon felt brave enough to return to the forest, where the wolfdog’s ears and eyes always stayed alert, as if he were searching for any signs of danger. Ivy was overjoyed to feel the pull of the wind through the trees once more, and the embrace of the sunlight that glittered in the glades.
The seasons stretched into years like saplings into great trees. Shilling grew from a pup to an enormous creature that made the villagers hiss and whisper behind their hands.
But still they came to the cottage for Gran’s remedies. And when the villagers left Poppy Cottage, they spoke in serious voices of how the child, Ivy, had herself grown from a small girl into something else. Something equally wild.
Ivy never heard this gossip, for she spent each happy day in her beloved forest, climbing the trees and memorizing from above the location of every thicket and clearing and rock and burrow. She spent each contented night by the fire, learning from her gran to prepare and mix remedies.
And, like a stone dropped into a deep pool, Ivy’s memory of the woman in white slowly faded away into nothing at all.
Until one moonless summer’s evening, Ivy and Shilling stayed late in the forest, picking dandelions to make a remedy for aching bones. When Ivy glimpsed the stars appearing between the branches of the trees, she knew it was past time to head for home.
Together, she and Shilling galloped through the trees, each racing the other and both racing the wind. But just as Poppy Cottage came into view, Ivy’s breath caught in her chest and she stopped short.
For there, gliding from the cottage, was the woman in the white cloak, carrying her wooden staff. Although it was summer, her fur hood hung across her face, hiding it from view. Shilling began to growl, but Ivy motioned for him to be quiet. Together, they hid behind a great oak tree. Nearby, Ivy could hear the sound of the woman’s cloak sliding across the forest floor. Fear spread like a dark ink stain across her heart.
She waited until the sound faded away, then sprang out from behind the tree. For she had just realized the importance of what she had seen. The woman in white, leaving Poppy Cottage, where Ivy left her grandmother tending the fire.