It’s called ichthyosis, but all that matters is that my skin is scaly and the scales flake off. My face and hands and feet look normal, but my arms and legs and torso get red and itchy, shed little pieces of skin like wilted petals. They’re soft, feathery almost, but very, very annoying. Jenna, one of my daughters, has the condition, too. Today she calls me from school to say she’s sick. Again. It happens when the other kids are teasing her. She knows I can’t leave work and I tell her to stay in the infirmary until it’s time to go home. I leave the jewellery store at five, hear more about the day when I pick the girls up from the babysitter’s.
“Em’s trying to sell my skin flakes on the playground,” says Jenna. She sits beside me in the front passenger seat. Em is behind her. “She’s saying they’re magic.”
Em’s two years younger, fourth grade, and has my ex-husband Isaac’s smooth skin. Jenna wears long pants and long-sleeved shirts to school most days, but Em has made sure that everyone in the elementary knows exactly what Jenna’s arms look like.
“Your sister is not a sideshow,” I say to Em.
“I’ll give her part of the money,” says Em. “Nobody’s bought any skin yet. I’ll have to work harder tomorrow.”
I swear she’s going to be in marketing someday.
“It’s her skin and it’s not magic and you can’t sell it,” I say. “That’s disgusting.”
“It’s all over our bedroom,” Em says. “I might as well do something with it.”
Jenna mutters, “Use it as damn confetti.”
“She swore,” says Em. “No dessert.”
“And no dessert for you for trying to sell pieces of your sister,” I say.
“Hey,” says Em. “New rule. No fair.”
I check the rearview quick to make sure no one is behind me, then turn into the next empty driveway and shift into park.
“Listen, kiddo,” I say, turning around, “there are some things that don’t need a rule made about them ahead of time. This is one. If you try it again, you’ll be asking for worse things than no dessert.”
Em pouts and Jenna smirks and I back out of the anonymous driveway and feel a headache coming on. When we arrive home, Em stomps into the house. Jenna and I follow her, but both of us go to the kitchen sink, roll up our sleeves, and dust off the skin scales that have loosened. Everyone’s skin flakes like this, just in pieces so small that most people don’t realise it. Jenna’s and mine wear off too slowly, so it thickens and looks kind of like alligator hide.
“So you got another stomach ache at school,” I say.
“Some of the kids are nice,” says Jenna, “but some of them are assholes.”
“Jenna,” I say.
“I’ve already lost dessert.” She shrugs. “And they are assholes. My friends don’t mind my skin. But the rest of them . . .” Jenna pauses, glances over to me. “They say I stink. And sometimes I do. On hot days. And after gym class.”
“I know,” I say quietly. Our skin doesn’t let sweat escape, which is sometimes a bigger problem than itchiness and irritation. We take baths in the morning and evening because bacteria get trapped under our skin and causes us to smell less-than-pleasant. In the summer we have to take extra care since the sweat can’t evaporate and cool us. When Jenna was little, two years old, Isaac let her be out in the sun too long and she got overheated. We had to take her to the ER. I never forgave him for that, especially because I was pregnant with Em at the time and didn’t need more stress. I’m not superstitious, but sometimes I wonder if that aggravation is responsible for Em’s temperament.
I give Jenna a couple cookies. Little ones.
“One more?” she says. I sigh but oblige. It’s hard to say no to her. Especially after days like this. Jenna smiles, knows not to tell Em, but a minute later my younger daughter flings herself into the kitchen.
“Jenna’s eating something,” Em says. “And you told us no desserts.”
“I gave her one cookie,” I say, “because she had a difficult afternoon.”
“She didn’t even have to be in class,” says Em.
“I’m sure she would have rather been there than in the infirmary.”
“Why can’t I get a cookie, too?” asks Em.
“You’re trying to make her miserable,” I say.
“I’m trying to make some money.”
“You’ll get to eat at dinner.”
“Not fair,” says Em. I walk past her to the refrigerator and find the chicken legs while Em huffs out of the kitchen. I am the mother of the bully and the mother of the bullied and I don’t always do the best job of negotiating it, but what am I supposed to do when my own child reminds me so much of kids who teased me when I was younger?
My sister and brother and father and I all had ichthyosis. My brother was the oldest, I was in the middle, and my sister was the baby, so we had safety in numbers. My brother was an outgoing guy, the sort everyone liked, so while we did get teased, no one tried to gang up on us. Later he became an accountant and my sister went into architecture. Neither wanted to have kids. Both were worried when I got pregnant because there was a fifty-fifty chance I would pass on the condition. Ours wasn’t a bad childhood, but it wasn’t an easy one, and they didn’t want me to give that experience to someone else.
Having a child entails an odd sort of narcissism. You decide that you’re attractive enough and a good enough person to create more of yourself. Sometimes I think I’d do it again. Sometimes I think I wouldn’t. One of my high school friends adopted because she’s diabetic and didn’t want to pass on the condition. But when I got pregnant with Jenna I was twenty-four and figured I should be able to have a baby, same as any other woman. After she was born with ichthyosis I didn’t plan on having another kid, figured the risk of having a smooth-skinned baby was too great. I didn’t want to breed rivalries. Understand that I love Em, I wouldn’t choose not to have had her, but the second pregnancy was a surprise.
Tonight when I tuck the girls in bed I see Jenna’s arms are a little red, inflamed.
“How are you feeling?” I ask.
“No worse than usual,” she grumbles, glancing up at me with hard eyes. I don’t regret giving her three cookies. I worry Jenna hates me because of her skin. Worry there is nothing I will ever be able to do to make it up to her. I have to try in small ways.
In the jewellery store I’m a gemologist, spend most of my day in a small room examining cut stones. Della owns the store, hired me to do appraisals and help her when she makes gem purchases, be sure that sellers have what they say they have. You can’t just take their word for it. Sometimes they try to give us lesser quality or even synthetic stones, but Della says they’d do it a lot more often if she didn’t have a gemologist.
I keep a loupe in my pocket for the initial examination, to spot obvious fakes. Faux diamonds, for instance, have facets that are rolled a little, without the crisp, sharp edge that a real diamond would have, and they’re too clear inside, don’t have inclusions like carbon flecks or small cracks. In the back room I have a small laboratory for closer inspections. Everything fits on a tabletop—the coloured diamond grading set, electronic scales, refractometer, dichroscope, spectroscope, and ultraviolet cabinet. Sometimes Della calls me out into the store to do an on-the-spot appraisal with my loupe, give an estimate of what a stone is worth or if it’s genuine, but I don’t like fast appraisals because they involve too much guesswork. I hate being rushed, prefer the quiet of my lab and having time to prepare longer reports on specific gems. Those involve pictures and diagrams, describe the stone in terms of its colour and clarity, its measurement in millimetres, the dimensions of its cut and crown height, and any damage or chips that may affect the value.
I love working with stones because of the lovely precision to the art, the weighing and measuring and calibrating. Sometimes I get a few skin flakes on the table when the cuffs on my sleeves aren’t tight enough, but I tend to lose myself in my work and my body becomes immaterial, an afterthought. That focus helps me survive on days when I’m terrifically itchy and uncomfortable.
At the store I try not to think about my girls, but sometimes can’t stop myself from wondering if Jenna will get sick again or what Em is telling the other kids on the playground. Em is shy around adults, but not peers. Jenna is the opposite, good with older people, but hesitant with those her own age. I understand her wariness. Even a few adults cringe when they see my skin, but they’re not as rude or as hurtful as children can be.
Two days after Em’s business fiasco, Jenna says her skin is dry and tight and it hurts to move. Her arms seem especially red, but I hate to let the girls miss school, and Em makes a big stink whenever Jenna does.
“Can’t you try going to class in the morning?” I say to Jenna while I’m brushing my hair.
She sits mournfully on the toilet. “Mom,” she says, “it’s really bad.”
“You could take a tube of lotion,” I say.
“You know how it feels when it hurts a lot,” she says.
“And sometimes I just go into work anyway,” I say. “Because it’s my job.”
Jenna closes her eyes. “It really hurts,” she says.
And so I let her stay home. I’ve taken off work a couple days in the past year because of pain, because sometimes it’s best to sit in a cool bathtub for a few hours. Jenna has periods when her skin is worse—drier and thicker—than mine has ever been.
While she draws water for her bath and dumps oatmeal and salt in the water, Em paces and rants and demands to know why she can’t stay home, too.
“She’s making it up like she always makes it up when she says she’s sick,” says Em. “She gets out of everything.”
“This is how it’s going to be, kiddo,” I say, handing her a bagel for breakfast because we’re running late. “You have to get to school now. We can talk more later.”
Em pouts during the drive, doesn’t tell me good-bye when she gets out of the car.
At work I feel lousy. My skin is particularly itchy, probably because I was in a hurry this morning and didn’t put on enough lotion.
Just before I go on lunch break, I get a call from the elementary principal telling me that Em has been caught on the playground trying to sell Jenna’s skin. She managed to get quarters off three kids, but several other students told the teacher. Em’s going to spend the rest of the day in the office doing homework.
“You love her more than you love me,” Em says that evening when I pick her up from the sitter. It’s the accusation all siblings make. What my brother and sister and I wailed to our parents from time to time.
“I don’t,” I say. Which is what all parents say. What my parents said. But I worry sometimes. I don’t love one child more than the other. But Jenna has to learn how negotiate her body and she needs help to do it. I feel more for her than I do for Em. Is it favouritism or just empathy?
In the passenger seat, Em starts crying.
“You give her cookies,” she says. “You let her stay up later. You let her stay home from school.”
“She’s older,” I say, “and today she was hurting.”
“You punish me more,” she says.
“I don’t love your sister more than I love you,” I say, almost yelling it. The sound reflects back from the windshield and fills the car. Em cringes. Funny how the more helpless people feel, the louder they get.
“I don’t love her more,” I say quietly. “But I know she was in pain today because I have those same pains. And I punish her like I punish you when she does something that’s not nice.”
Em stops crying but doesn’t say anything else. When we get home, Jenna is still in the bathtub, says she’s been in and out of the water all day. She towels herself off and we go to my bedroom so I can apply lotion. It’s best to do when our skin is still a little wet. I smooth it over her back and neck, places she can’t reach.
“I want some lotion, too,” says Em, wandering into the bedroom and sitting down beside me. I put some on her shoulders and her arms, but her skin is so smooth already, she doesn’t need it. After I spend a minute rubbing her back, I peer back at Jenna whose skin looks even worse to me than it did before.
“I want some more,” Em says when I return to lotioning Jenna.
“Jenna needs it around her neck,” I say.
“If you’d rather have skin like this, be my guest,” says Jenna.
Em thuds out of the room. At dinner she chews slowly, stares down at her plate, shrugs when I ask her about the history project that’s due next week.
“Honey,” I say, “you don’t need lotion. Your skin is smooth enough.”
“Brat,” mutters Jenna.
“Hey,” I say and narrow my eyes at my older daughter.
“Feeling like this doesn’t put me in a good mood,” says Jenna.
By the end of the meal, both girls are scowling at me. After dinner Jenna sits on the couch in her bathrobe, starts doing the homework papers her teacher sent home with Em. I load the dishwasher. Em plods to the girls’ bedroom. I know I need time alone with her, think maybe next weekend Jenna could spend the afternoon with a friend and Em and I could be together, maybe see a movie or go to the park and get ice cream. I walk to the girls’ room, hoping the promise will cheer her up.
When I brush through the door I find Em sitting in the middle of the floor, surrounded by a dozen or so of Jenna’s shirts and a ruler. She’s cut all the sleeves three inches down from the shoulder, scattered the pieces around her. I gape. Em smirks at me, measures down another sleeve before she hacks it in two.
“Goddammit,” I yell.
Twenty seconds later Jenna scrambles from the living room, starts crying when she sees Em surrounded by sleeves. “How am I going to go to school when everyone can see my arms?”
“You don’t want to go anyway,” says Em.
“That’s it,” I say. I grab Em’s arm and haul her up off the floor. She tries to wrest free but I’m holding tight. Em doesn’t flinch. She’s done what she wanted to do. Upset me. Jenna drops to her knees, gathers up her shirts and the sleeves. Any sympathy I felt for Em has drained through my hands and feet. The sleeves will have to be sewn back on Jenna’s shirts, and I’ll need to buy her several new ones because the seam will look funny.
“Grounded,” I say. “No television or desserts for two weeks.” Em keeps squirming. I don’t know how else to punish this. Grounding alone isn’t adequate. I can make her pay for a couple new shirts, deduct money from her allowance, but there’s no way to make Em understand how it feels, the itching, the embarrassment, the need to be constantly covered.