How to Disappear Completely

by Ali Standish

  I run my fingers over the tiny valleys made by the pen that pressed against these pages so long ago, and I remember the only thing Gram ever told me about her childhood. She used to play in the Spinney as a little girl, too.

  Did she do these sketches in the Spinney? Sketches of things she saw, or imagined she saw? And how old was Gram when she did these? Was it before or after that picture was taken? And was the picture before or after her illness?

  The truth is, Gram didn’t leave me answers in any of these objects. And the more I stare at the sad girl in the picture, the more I feel like I never really knew her at all.

  40

  When I go down for breakfast on Monday, Lily is sitting on one side of the table. Mom has some blueprints laid out on the other. In one of the bottom corners, it says, O’SHEA HOUSE.

  I literally glance at them just long enough to see the name before Mom appears behind me and starts rolling them up. “Don’t look at those, please.”

  “Geez, Mom, it’s not like they’re state secrets,” Lily says. “Anyway, you left them out.”

  I reward Lily with a smile. I could get used to this whole getting-along thing.

  But when I turn around, Mom is staring at me with her eyebrows knitted together in the expression she has when she watches the six o’clock news.

  “What?”

  “You—you’ve got a new one,” she says, brushing her thumb against the skin beside my nose.

  I run upstairs to look in the mirror. Mom is right. There’s a new spot on the right side of my face, just between my cheek and my nostril.

  It’s a tiny little spot. It shouldn’t be such a shock, especially because, in lots of the pictures I’ve seen of people with vitiligo, it forms a pale mask around their eyes, mouth, and nose. I already have it around my eyes and my mouth, so what should it matter if I have it around my nose, too?

  On the bus, I try to convince myself that I’m fine. I remind myself that things are already going back to normal at school.

  But then in math class, when I finish rummaging in my backpack for my homework, I look down at my desk to see a folded piece of paper.

  On it are two words.

  Hey FREAK!

  I look around, but everyone is staring at their notebooks or up at what Mr. Owens is writing on the board. One of the Graces sits behind me, right beside Sean. Was it one of them? Or was it Skyler, the girl who I caught staring at me last week?

  I crumple up the note, my eyes burning with tears.

  How could I have actually thought that just because I had one okay week that things were going to be normal again?

  In the library at lunchtime, when Fina asks me what’s wrong, I show her the note. She looks at it and scowls. “Who wrote this?”

  “I don’t know. The Grace with braces, maybe. Or Sean, or someone else. Someone left it on my desk. And there’s more. I have a new spot.”

  I point to my nose.

  “I can barely see it,” Fina says, squinting hard behind her glasses.

  “It’ll probably get bigger,” I say. “I thought—I thought I was kind of okay about it now. But maybe I was just okay because last week I didn’t see any more spots. And nobody called me a freak.”

  Fina squeezes my hand. “I’m sorry someone wrote this note,” she says. “And maybe there will always be a few stupid people who are mean about your vitiligo. I can’t pretend that that doesn’t suck. But there’s also me. And I don’t think you’re a freak, no matter how many spots you have. Do you think you’re a freak?”

  I actually think about this for a while.

  A few weeks ago, I might have said yes. It’s true that I have pale patches on my face and neck and elbows and toes. That is still weird, even to me. But when I look in the mirror now, I don’t see a disappearing girl anymore. I see more than just my patches. I’m starting to see Emma again. Plain old normal Emma.

  “No,” I say finally. “I think I look different from most people. But I’m not a freak.”

  “So, whose opinion do you trust more? Yours and mine? Or Grace and Sean’s?”

  “Yours and mine, I guess.”

  “Thank god,” Fina replies. “I was really worried for a second there. Besides, there are tons of people in the world like you, remember? Didn’t you say it was like one in a hundred?”

  “Yeah,” I say. “I did.”

  She grins, and for some reason, I suddenly think again about Gram and me, standing in front of the village hall lights last Thanksgiving. How she said she loved this time of year because it was when the world finds out how resilient it is.

  I didn’t actually know what resilient means. I had to ask Gram.

  It means not giving up, even when things are really tough. Like how plants can live through winter in the frozen ground and still bloom again in spring.

  And I guess maybe looking different from most people means I’m just going to have to be resilient now, too. To hold on tight to the Emma that I almost let slip away before. Because Fina’s right. I’m not always going to be able to control whether people call me names or write mean notes.

  But I also can’t let those things control me.

  “Emma?” Fina says. “Did I say something wrong?”

  “No,” I reply. “No, I was just thinking. Everything you said was right. Totally, one hundred percent right.”

  Then we spend the rest of the lunch period talking about what Dad told me about Gram’s childhood and what I found in her closet.

  “Madeline Mitchell is the only one who can answer my questions about Gram,” I say after I’m done. “We have to go talk to her. Tomorrow.”

  “Tomorrow,” Fina says with a nod. “After school.”

  41

  The rest of the day is surprisingly okay. I feel like I just got back a test that I thought I had flunked, but I actually did really well.

  I got a new spot and got called a freak. And I survived.

  I’m okay. And the fact that I’m okay somehow makes me feel much better than okay.

  There really is something to this whole resiliency thing.

  When the last bell rings, I find myself hovering outside Ms. Singh’s doorway. I wait until the last few kids trickle out, then I step in.

  “Hi, Ms. Singh.”

  She looks up from the papers she’s shuffling on her desk and smiles. “Hi, Emma,” she says. “How’s your day been?”

  “Pretty good. What about yours?”

  “Long but good,” she replies.

  “Ms. Singh? I, um, heard someone say that you know someone else with vitiligo.”

  Technically, I heard it myself, but I still don’t want Ms. Singh to know I was standing outside her door when she lectured everyone about being nice to me.

  All afternoon, I’ve been thinking about what Fina said. There are other people like me. Lots of them.

  Her eyebrows lift before she shakes the surprise from her face. “That’s right,” she replies. “Two people, actually. One friend from high school and one from college.”

  “What do they do?” I ask.

  “Hmmm, well, one’s a lawyer,” she says. “The other does something with music production, I think. He lives in Hollywood, anyway.”

  “Oh, wow,” I say. “And are they—I mean—what does their vitiligo look like?”

  “Well, the lawyer has some on her face, and the music producer has it mostly on his hands and feet, I think. I don’t keep in touch with him much. But the lawyer is one of my good friends. If you ever—well, if you want to talk with someone about it, I’m sure she would be happy to talk to you.”

  The whole time I felt so alone because of my vitiligo, I never even thought about talking to someone else who had it. Never thought, until today, that it might help me feel less lonely. But actually, it would be really nice to talk to somebody who’s gone through what’s happening to me. Someone who doesn’t have to try to understand. Who just . . . understands. “Thanks, Ms. Singh,” I reply. “That would be great.”

  “Sure
thing. I’ll give her a call after the Thanksgiving break. And Emma? Are things, you know, going okay for you? Here at school, I mean?”

  “They’re—” I start, thinking about the crumpled note now lying in the library trash can. “I think they’re going to be, Ms. Singh. I think they’re going to be more than okay.”

  “Glad to hear it, Emma,” she says, beaming.

  A few minutes later, while I’m waiting for Mom to pick me up, I google “famous people with vitiligo” and scroll through the list. Turns out, not only is there a supermodel with vitiligo, there are actors and singers and politicians—even a ballerina. The pale spots sprinkled across her dark chest twinkle in the stage lights like stardust.

  And the best part is, the comments section of the article isn’t filled with trolls calling the people in the article awful names.

  It’s filled with people saying how beautiful they are, how unique and brave.

  My chest feels warm inside by the time I’m done reading. The feeling floats with me out into the parking lot when Mom’s car pulls up.

  “How was your day, sweetie?” she asks.

  “It was pretty good.”

  “Well, that’s great!” she replies brightly. “We need to stop at the grocery store before we go home. There’re still some things I need to get for Thanksgiving. Actually, can you pull my list out of my bag? I want you to write down a couple more things before I forget them.”

  I grab her briefcase in the back seat and start rummaging through the papers inside.

  “No, not my briefcase,” she says. “My purse.”

  But I’m already pulling out a list from the briefcase.

  Not a grocery list. Another list.

  “Emma, put that back, please.”

  But I’ve already started to read it. And the more I read, the more the warm feeling slips away.

  Questions for Dr. Howard:

  Any sign of repigmentation from the light box/creams?

  Supplements/natural remedies to try?

  Special diets—do these work?

  Scientific trials—any promising?

  What about acupuncture?

  Depigmentation cream—more details?

  I stare at the questions. My chest is cold and clammy now. Mom is saying something about wanting to be prepared for our next appointment, but I’m not really listening. All these questions are about treatments. Ways to get rid of my vitiligo.

  I don’t say anything for a long time. The tears I was fighting this morning are back.

  Because as long as I have a friend like Fina, I can be resilient at school. I can make myself not care what the Graces and the Seans of the world think of me.

  But I can’t do that with Mom. I can’t not care what she thinks of me. She’s the person who’s supposed to love me no matter what.

  “Depigmentation cream, Mom?” I ask. “Seriously?”

  I remember reading about that. It’s for people with vitiligo covering a lot of their bodies who decide that getting rid of the rest of their pigment is better than being split into two colors or waiting for the rest of their color to fade away.

  But my patches are still really small compared to those people’s. Can my own mother really want to strip all the color left in my skin? The color I’ve always been proud of—the one she gave me?

  “Well, not for now, of course,” she says. “It’s just to get a sense of what our options are for the future. In case, you know, the treatments we’re trying now don’t work. I’ve seen pictures of people who have no pigment in their skin, and they look very normal. Just fair-skinned.”

  “Would you just STOP thinking about how to make me normal, Mom?”

  The words burst out of me like racehorses galloping from their gates.

  “I know it must be really hard for you to have a polka-dotted daughter and everything, but maybe you could just try to get used to it.”

  I hear Mom give a little gasp. She pulls over to the side of the road and puts the car in park. I stare straight ahead, not bothering to wipe the tears running down both cheeks.

  “What do you mean, Emma?” she asks, her voice shaking slightly.

  “From the second I got diagnosed,” I say over the sound of my blood, which seems to hum with anger, “all you’ve cared about is getting rid of my patches. All the creams and the light treatments and sending Lily to do my makeup. But now that I’m not wearing makeup anymore, you want me to be some guinea pig for scientific trials or take away the rest of my color so I can fit in again.”

  “Emma, I—”

  But I can’t stop the words now. “Every time you look at me, I see you staring at my spots, trying to see if I have new ones. It’s like I’m not even your daughter anymore. I’m just this big problem you can’t wait to fix so you can go back to having a perfect life. Well, news flash. I’m not perfect. And neither is Lily, by the way. I’m sorry you didn’t get a daughter like Edie O’Shea, but you know what, Mom? Edie isn’t a very nice girl. And I would rather have spots and be nice than be popular and mean.”

  Now I’m done. I wrap my arms around myself, hunching my shoulders, and start to sob. Mom slowly reaches over and pets the back of my head. I scoot against the window, away from her hand. There’s a long moment of silence.

  Then, “Emma,” Mom says again, her voice soft. “Maybe I haven’t been— I haven’t done the best job supporting you. I see that now. But believe it or not, up until this moment, I really thought I was doing the right thing.”

  “How is making a list like this supporting me?”

  “I thought you wanted to get rid of your spots,” Mom says. “You seemed so scared when you were diagnosed. So I’ve been researching anything that might help. Or at least give you some hope. Of course I don’t want you to do the depigmenting cream. And I’m not going to put you in some trial. I just thought it would be nice for you to know if there’s anything promising for the future. But was I wrong about you wanting to treat your vitiligo?”

  “No,” I say, sniffling. “Maybe. I don’t know. I just want to know that whatever I want, it’s okay with you.”

  She reaches over again to stroke my head, and this time I don’t pull away. “Emma, of course it’s okay. I thought you— Well, it doesn’t matter. I should have said that right away. Maybe I didn’t listen well enough. Maybe I just thought you were scared because I was.”

  “Scared of what?”

  She sighs. “If you ever have kids, you’ll know that your first priority becomes their happiness. You want to do everything you can to keep them safe and happy. You want the world to be kind to them, and that’s not always something you can control.” She gives a little cough, but it’s not enough to disguise the waver in her voice. “When we found out you had vitiligo, I was so worried that your world might become a crueler place. I know how awful kids can be about stuff like this.”

  I glance at Mom. Her eyes are glistening as she stares at me. “You do?”

  “Of course I do,” she says. “When I was your age, I got bullied a lot at school.”

  “You did?” I’m not sure I’ve ever really thought about Mom being my age, but if I had, I would definitely have imagined her as the most popular girl in school.

  “I did. I wore hand-me-downs from my sisters because your grandma said there was no point in buying new clothes when we had perfectly good ones. She cut my hair herself, and she wasn’t very good at it. She didn’t know how to style it like the other girls did. And the worst part was, I had terrible acne, but I wasn’t allowed to wear makeup.”

  Mom laughs a little and shakes her head. “As soon as I got to college, I found a part-time job and saved up all my money for new clothes. I bought magazines to teach myself to do my makeup.”

  I cock my head, trying to imagine Mom as a dorky kid with a bowl haircut and pimples. But I can’t. It is literally impossible to see her as anything other than beautiful.

  “Why didn’t you ever tell me this?”

  “It’s not something that makes me happy
to talk about,” Mom says. “And when I became a mother, I didn’t want you and Lily to go through what I did. I wanted to give you every advantage I could. I’ve always tried to protect you however I can. That’s what I thought I was doing these past few months.”

  “So, you aren’t ashamed of me?” I ask. “Not even a tiny bit?”

  “Not even a microscopic bit ashamed,” Mom says. “Just very, very worried. Especially since Ms. Singh called us that week you were ‘sick’ to say that you were going through a hard time at school.”

  My heart skips a beat. “She did?”

  Mom nods.

  “What did she tell you?” I ask. “Why didn’t you say anything?”

  “She said that there were some rumors going around school about vitiligo and that she would address them with the students. And your dad said that if you didn’t tell me, it was probably because you didn’t want me to know. I wanted to say something, but I decided he was right.”

  I can’t believe Mom’s known all this time. Can’t believe she knew and, instead of trying to get me to tell her all the details and find a way to fix it, just watched Netflix with me and rubbed my back. Is that why she’s been crying at night? Not because she’s ashamed, but because she’s been worried about me getting bullied?

  “Emma,” she says, “I want you to tell me the truth now. Are kids still giving you a hard time? Is it Edie O’Shea?”

  I hesitate a second before answering. “Some kids are always going to be stupid,” I reply. “But I have Fina. I’m resilient. So you don’t need to worry about me so much, okay?”

  Mom nods. “Okay. But maybe just a little bit?”

  She brushes the back of her hand against my cheek. “Yeah,” I say. “Just a little bit would be nice.”

  “And about Edie,” Mom says, then stops, biting her lip.

  “What?”

  “Well, I shouldn’t really say anything. I’m only telling you this because I trust you not to tell anyone and because it might help you understand why Edie has been mean.”

  I lean in closer, waiting.

  “You know the house I’m designing for her dad?”