“Hello?” It’s that high-pitched four-year-old voice I know too well. Shouldn’t she be in bed by now?
“Hi, Sarah. It’s Sep. How you doing?”
“I’m in trouble.”
“What a surprise.”
“At school.”
“As good a place as any.”
“Know what I did?”
“You can tell me later. Can I talk to your mother?”
“I bit Clancy.”
“You’re four, Sarah. Almost five. You know biting is antisocial.”
“What’s antisocial mean?”
“You can guess.”
“Bad.”
“Right.”
“He deserved it.”
“I’m sure he did. But that doesn’t matter. When people are rotten, we try to help them, not bite them.”
“No one helps me.”
“That’s not true. Besides, no one bites you, either.”
“Clancy did.”
“Oh.” This changes things. A little. “Did you bite him back? Is that what happened?”
“No. I bit him first. He bit me back.”
I stifle a laugh. “Can I talk to your mother now?”
I hear the phone clatter, probably falling to the floor.
“Hello, Sep? Is that you?”
“Do you still need a sitter for tomorrow night?”
“Yes.”
“Are you still paying two dollars more an hour?”
“Yes.”
“Plus a five-dollar bonus at the end of the night?”
“Yes.”
“Then I’ll do it.”
“Thank you! Can you be here at seven?”
“Sure.”
“Thank you, I’m so grateful. And you’ll have plenty more parties you can go to. You’ll see.”
Right. “See you tomorrow, Mrs. Harrison.”
I take a bath because it’s easier to inspect myself in the bath than the shower. With a hand mirror, I examine every inch of my body I can possibly see.
I get out and towel off and sit on the sink with my rear to the medicine cabinet mirror and use the hand mirror to see the center of the back of my head and neck.
This is dumb.
I go to my room, clutching that hand mirror, and check myself out top to bottom in the full-length mirror inside my closet door.
There are no other white spots on me. Yet.
I fall in bed. All at once I realize I haven’t called Devin. I was going to. I promised myself I was going to tell her everything. But I’m in bed now. And I feel like a heap of heavy dung. I couldn’t get up if I tried. But I don’t try.
My stomach burns like nothing I’ve ever felt before. Flames shoot up the center of my chest. I’ve heard about heartburn in TV commercials. I’m giving myself indigestion. I’m becoming certifiable, like Slinky said.
And I’m going to be very ugly very soon.
IN THE MORNING I put on the blue lip color. I’m not exactly sure what the difference is between lip color and lipstick beyond the fact that one is skinny, so you get less for your money.
Silver Plum. It isn’t actually very blue. And it is actually very pretty.
Suddenly I’m furious. I don’t even know why. I jam the top on the lip color so fast, I catch it wrong and break off the tip. More money wasted.
“Cool lipstick,” says Devin, first thing.
“It’s a disguise.”
“Maybe. Or maybe you’re becoming someone else.”
“Have you been doing mind probes again?”
She laughs.
“I got something for you, too.” I hand her the purple nail polish.
“How come?”
“Just ’cause I love you.”
“Thanks. I love it.” Devin puts it in her pocket. “And I love you, too. Hey, you’re not going to believe this: I heard someone talking about you. In a good way.”
There goes that heartburn. “Who?”
“Well, actually, I didn’t hear it. Rachel did. And she told me.”
I like Rachel; she loves Mamma’s spinach pie. “So…? Out with it. Who was talking about me?”
“Guys. They were listing girls. And your name came up. I told you it was possible. You have to learn to trust me.” Devin talks. On and on.
I should interrupt her. Say I have something to tell her.
But I don’t, and Becca joins us. And now it’s two motormouths.
As we reach school, I compose my face. Casual is the rule. “Oh, Becca, I meant to tell you, I’m sorry, but I can’t make it tonight.”
“You’re not coming?” Becca catches me by the elbow. “Really? You’re not going to some other party, are you?”
“Of course not. I just can’t do a party tonight.”
“Did you get grounded? You! I can’t believe it! What did you do?”
I’d laugh if I wasn’t so sad. “Mamma’s never even heard of grounding.”
“Sep, you’ve got to stop calling your mother ‘Mamma.’ I’ve been telling you that since sixth grade.”
“Yeah, right, I’m hopeless.”
“Wow.” Becca steps back and studies my face. “You’re really upset. What happened?”
“I got to run. I hope the party’s great.” I hurry to my locker.
Devin’s at my side. “How could you do that?”
“What?”
“How could you not tell me? I was counting on going with you. You knew that. I can’t believe you did that.”
“I’m sorry. It just happened. Last night.”
“What? What happened?”
My throat has done that shut-trick again. It’s been doing that a lot. It feels like it’s closed to the size of a straw. Maybe I’ll suffocate. “I can’t talk now.”
“You can’t talk ever. I texted you last night, but you never answered. I tried Wednesday night, too. I keep telling myself you’re not trying to avoid me. I keep smiling and joking with you. But now this. You just flaked out on me. Parties aren’t any easier for me than for you, you know. I act excited because you’re supposed to act excited. But you know how I’m really feeling. So what’s the matter, Sep? You’re supposed to be my best friend. What’s going on?”
I have to tell her. But not here. I would rather someone stab me through the eyeball than cry in the school hall. “Drop it, okay?” I stash my backpack and grab my stuff for Bio and English.
“All right. I get it, Sep. I get this message loud and clear.”
I turn, but she’s disappeared in the hall crowd.
What a jerk I am.
In Bio Mr. Dupris tells us enzymes are proteins that catalyze chemical reactions. That means they speed them up. He shows us a picture of a white cat with blue eyes. He calls it an albino.
I sit up straight so fast, I smash my knees on the underside of my desk.
“Is something wrong, Sep?” Mr. Dupris looks worried.
I feel myself flush. Find something to say. Fast, girl. “I thought albinos had pink eyes.”
“Most do. But in some albino cats, the eyes can be blue. This cat is missing an enzyme that would catalyze the reaction that would allow the amino acid tyrosine to produce melanin. Melanin is responsible for skin pigmentation.”
So that cat is white because he’s missing an enzyme. “What enzyme?” I blurt out.
“Good question, Sep. Tyrosinase.” Mr. Dupris looks proud of himself. “And the enzyme that catalyzes the chemical reaction that breaks down proteins into their component amino acids is called proteinase—or protease, for short. Can you see the pattern?”
A half-wit could see the pattern. No one answers. We’re not half-wits.
“You take the name of the substance that the enzyme acts on and you attach the suffix -ase, and, presto…” Mr. Dupris snaps his fingers. “You’ve got the enzyme name. It doesn’t work all the time, but it comes close.”
Mr. Dupris should date Mrs. Reynolds, the Latin teacher. She’s always going bananas over analyzing words. But she’s married. And probably
thirty years older than him. Maybe forty. Still, they could be open-minded about it.
“Now look at these photos.” Mr. Dupris shows two more photos. “Here’s a black cat. And here’s a black cat, but with some red hair right there.” He taps the photo. “They’re the same cat. When they changed the cat’s diet so that it had very little tyrosine in it, some of his hair turned red.”
Dr. Ratner said my hair wouldn’t change color. Or, rather, he said it was rare—and only in patches.
But then, I’m not a cat.
I have nine hundred questions. But this class is about enzymes, not about pigmentation. That was just an example to make Mr. Dupris’s point. I suck in the sides of my cheeks and try to listen. We’re having an enzyme quiz on Monday.
English class is interminable. Mr. Batell has a gravelly voice that makes me think of grating off all my skin, and that idea makes me even jumpier.
I gobble my lunch as I walk. Joshua didn’t come talk to me at lunch yesterday, which probably means he’s moved on, and Devin sure isn’t about to invite me to sit near her, so what’s the point of going to the lunchroom? I go directly to the library.
Cats that are missing tyrosinase are not only albino, if they have blue eyes, they are also often deaf. And it isn’t even all white cats with blue eyes—because lots of other things can cause white hair and lots of other things can cause blue eyes.
White connected to deafness.
Nothing I read said I might go deaf.
I close my eyes. Someone coughs. Someone turns a page. A chair leg scrapes the floor. Birds and people do their thing outside the window. The librarian speaks softly. The air itself seems to make noise. What’s silence like? Constant silence?
I open my eyes and type again. Fast. My fingers fly. It turns out a mutation in tyrosinase is responsible for albinism in humans, too. In pretty much anything that can be albino, in fact. Even plants. But whiteness from vitiligo has nothing to do with any mutation or malfunctioning of tyrosinase.
So much for that.
Still, if I want color, I might try increasing my tyrosinase. Tyrosinase contains copper. I search around a bit. Nuts and oysters contain a lot of copper. So does organ meat—but I will never eat organs, yuck. Maybe I should learn to like oysters. And I love nuts. Especially Brazil nuts.
Only now I find articles about high levels of copper in our blood being connected to depression, bad PMS, learning disabilities, senility, and schizophrenia.
In other words, nuts make you nuts.
I’m joking. What am I doing, joking?
I lean back and pick at a spot on the base of my thumb. It’s brown, not white. A hint of blood shows instantly. Rosy. On an impulse I Google “scrape off skin” and find a site about pumice stones. They are a gentle way of removing skin, especially rough, stained skin, like on feet and elbows. My lip skin is not rough and the problem is, there’s no stain to remove.
I could buy a pumice stone and rub and rub and rub like a maniac, until my skin was gone and my lips bled. But they’d only scab up, and when the scab fell off, they’d be white again. Plus I hate the idea. When Devin and I were little and she wanted to be blood sisters, she pricked herself with the pin, handed it to me, and held up her bloody thumb, waiting. But I threw the pin in the trash and ran home. I couldn’t mutilate myself.
I kiss the tiny hurt on my thumb.
I should have kissed everyone in the world while my lips still had color.
MAMMA’S WAITING FOR ME in the car as I come out of school. She beeps, but I’ve already seen her. She drives a baby blue VW bug, the old kind, so it’s easy to spot her even when you’re not looking for her. It’s in mint condition, which means everyone admires it.
I get in and look down so I won’t see the eyes of car aficionados. “What’s up?”
“We can use the medical library at UPenn. I thought we might go now.”
“Who did you have to sleep with to work that out?”
“Very funny. The husband of one of the English professors teaches there.”
“I thought you hated all English professors.”
“I do. But they don’t know that. Besides, I only hate them when they talk. How was your day?”
I wonder if my dislike of literary-criticism talk comes from Mamma. And here I thought she hardly influenced me at all. “We learned about limits.”
“Limits? Well, I should hope everyone in eleventh grade already knows about limits.” She puts on a fake schoolmarm voice.
“This is math, Mamma. Limits are an interesting idea. You can talk about the value of something as it approaches something else. Like if you put a triangle inside a circle, with the three points touching the circle, well the triangle covers less area than the circle. But if you put a square inside the circle, it still covers less area than the circle, but more than the triangle did. And you could keep going. You know, putting in a pentagon and then a hexagon and whatever, on to an infinite number of equal-length sides. You get closer and closer to the area of the circle, but you never quite get there.”
Mamma doesn’t say anything.
She’s like everyone else; I bore her. “You’re not listening.”
“I am, too. You said, ‘You never quite get there.’ But, you know, Pina, it sounds close enough.”
I look at her surprised. Is my mother brilliant? “I bet you’re right.”
“Right? Me? I thought I was your mother, and that meant I’m never right.”
“This time you might be. I bet we’re going to be looking at cases where close is all you can get, but close is enough.”
“Enough for what?”
“I don’t know. We haven’t gotten there yet.”
She laughs, and I wasn’t even trying to be funny.
We park in a parking garage. I let out a yelp. “You mean we’re not going to circle the area nine hundred times to try to find a meter?”
“I thought you had a babysitting job tonight. Time is limited.” She smiles. “Limits, you see.”
No, I don’t see. That’s not the same idea at all. My mother is not brilliant. Well, that’s a relief. She’s pretty—at least I can be the smart one.
We go through many doors and Mamma explains to three librarians, each one more important than the last, before the name of Professor Diaz makes magic happen. The fact that Diaz is his last name explains why Mamma can talk to his wife, the English professor. Mamma can overlook a lot about people if they speak a Romance language.
This librarian sits us at a table and actually brings us books himself.
We read. And look at hideous photos. One book says some vitiligo victims feel like freaks and withdraw from social situations. I close it. It’s the biology I want to read, not some depressing psychology junk.
I open another book. Dr. Ratner was right. No one knows what brings on vitiligo. No one knows how to cure it. But they try. They try really hard.
There’s the blunt and painful method: skin grafting. But you keep getting new spots. And the grafted skin can get spots.
There’s an ultraviolet light therapy to darken the spots. You put a photosensitive medication on the spots first, then sit under a lamp that shoots UV light. Two to four times a week, for fifteen to thirty minutes, for a year or more. And then sometimes it doesn’t work at all.
After each treatment you have to wear UV protection over your eyes for a few days or you might get cataracts. So you’re wearing the protection nearly all the time. And you have to wash the drug off your skin before you go outside or else cover up really good, because you can get a terrible sunburn.
I am not interested in UV therapy. Laser therapy sounds even worse—the burns are apparently super painful, they can’t be exposed to the sun, and sometimes it works and sometimes it doesn’t.
But I have to find a cure. Okay, here’s more.
If a person has severe vitiligo, where over fifty percent of the body is white patches, then doctors can use a skin bleach, so the person becomes whiter all over. Then you look more u
niform. The trouble is, the bleaching is permanent. But sometimes vitiligo clears up on its own, so you’ve become a ghost for no reason.
Sometimes vitiligo clears up on its own. I’m trembling inside.
Mamma obsesses on bad things pretty often and Dad always tells her that statistically it just isn’t going to happen to us. And Mamma always answers that if it happens even to a tiny fraction of people, why shouldn’t we be in that tiny fraction. But it can’t just be the doomed tiny fraction that our family should be part of. We could be part of the lucky tiny fraction, too. Why not?
I keep reading.
Ointments can be used—Vitamin D, cortisone, tacrolimus. They don’t have a lot of side effects. And sometimes they help. But mostly they don’t.
The one thing that has no side effect is cosmetic concealers. Covermark, Dermablend, Chromelin Complexion Blender. It turns out most people with vitiligo cover it up; they go into hiding. All these white-speckled people, hiding away like fugitives. That strikes me as ridiculous. I’d never do that. I am who I am.
Except lipstick is a cover-up.
I’m getting dizzy.
And, hey, it turns out I need vitamins now. I should take a B complex, and E, and folic acid, and ascorbic acid, every day.
And I shouldn’t develop film. Exposure to phenols can accelerate vitiligo. Well, there goes that future hobby—as though anyone develops film anymore. I bet I can’t become a horse jockey, either. Or a dentist. Or the president of a small banana republic.
“I want to go home.”
“Sure.” Mamma closes the book she’s reading.
We drive home with the radio on. I stare at the back of my hand. Is there a white spot there? I cover it with the tip of my index finger, then lift and look again. It’s still there. It wasn’t there this morning. It wasn’t there at lunch.
Vitiligo happens gradually for most people. But for others it comes in a bang. White lips one morning. Unrecognizable three months later.
When we pull into the driveway, I turn the radio off. “I’m not doing anything with UV therapy or lasers. And no skin grafts. And no bleach.”
“Let’s see what Dr. Ratner says.”
“I’m not doing it, Mamma.”
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