Lovely, Dark, and Deep

  Josh: How does Café Nestor work for you?

  Josh: By Liberty?

  Josh: After school?

  Texting Josh is one thing, but seeing him in person, something else entirely. My hands, my hat, my fainting, I have strayed far, far away from normal. I stuff the phone into the dark recesses of my messenger bag. My shoulder is against the door, ready to push it open, but for the first time, I don’t want to go inside, where I’ll be under surveillance. Or worse, pummeled with guilt. That guilt means that I should be wildly concerned about my mysterious condition, a reality I can’t deal with right now because my life is not changing. At. All.

  My head itches under the hat. Irritated, I swipe it off, feeling ten pounds lighter and ten times cuter. My phone buzzes with a call. I sigh. This could not possibly be my parents, detecting my hat removal, is it? I narrow my eyes, scan the dashboard. I wouldn’t put it past them to rig my station wagon with a spy cam even if one of their core concerns is protecting personal privacy.

  “Viola,” Dad says, his voice urgent in my ear, “there’s an opening at the pediatric dermatologist in an hour. Can you meet us at Children’s?”

  Before I can protest, Mom preempts my refusal. “Honey, we know it’s the second week of school. But your health is more important.”

  Who am I to ignore the perfect excuse to leave Auntie Ruth guilt-free? I text her, Sorry, I’m not up for a visit, which is technically true. Take that back to Dad.

  THINGS YOU NEVER WANT THE PERSON YOU’RE CRUSHING ON TO SEE

  Clipping your toenails.

  Picking earwax, eye goop, belly button lint, pimples, scabs, tartar, or ingrown hairs.

  Cheating on tests, board games, or people (say, your boyfriend, and you find out that he’s back together with his ex because you and thirty of your favorite classmates catch them grinding in the hall, and he never, ever acknowledges your presence again).

  After this morning, I can say with the confidence that comes from firsthand knowledge, none of these compare to phototesting.

  What I’m talking about is having one-centimeter patches stuck to your backside. (Yes, your buttocks, butt, behind, bum, tush, rump, rear.) And then, aimed straight at said polka-dotted backside are different light sources along the visible light, UVA, and UVB spectrum. (Who knew my research on light for Josh would come in so handy?)

  So there I am for an hour, while fluorescent bulbs, a xenon lamp, a boxy device called a monochromator, a slide projector, and good old sunshine are blasted one at a time at my butt. What the medical team is doing is provoking a reaction. They could have accomplished that with their questions alone.

  “Are you itchy?” (Yes.)

  “Does it burn?” (Yes!)

  “Does it hurt?” (You think?)

  …

  It is not a good sign when the phototest is cut short because your skin has reacted faster than the speed of fear.

  Weakness is not an option for the Lee & Li clan—we grit our way through headaches, laugh at broken bones, scoff at fevers. Menstrual cramps? What are those? We are the Marines of our lives, letting nothing and no one come in the way of duty and obligation, always faithful to work, school, and bake sales.

  So it’s startling when Mom asks me once we’re headed down to the lobby of the Children’s Hospital, “Do you want to go home, honey?”

  I keep my hands fisted at my sides, wishing I’d worn a long-sleeved shirt that I could tug over my knuckles. Blister count: now three. Troubling since the phototest was aimed at my rear, not my hands.

  Dad chimes in, “Yeah, rest a little? You must be exhausted.”

  I am, but I won’t, especially when their very questions reveal that they’re fretting, too. “Fret” is a four-letter word in the Lee & Li world. We lock down. We pinpoint. We plot. We do not worry, considering anxiety an unnecessary waste of precious time and energy. So I shake my head and look stoically forward at the windows, all sunshiny bright outside like there could not possibly be anything wrong in the world.

  “Okay, then!” Dad says with the heartiness of a serial attendee (reject) of Santa school. He throws his arm around my shoulders. “We’ll get the test results tomorrow. They promised.” (Ho! Ho! Ho!)

  “They ended the test early,” I remind them.

  “Meaning they were able to rule out some conditions fast,” Mom explains to me like I’m a toddler.

  I fume. Another four-letter word in the Lee & Li world. We pitch. We persuade. We produce. We do not aimlessly fume. Yet. Why won’t my parents just tell me what they know or suspect? Annoyed, I demand, “Like what? What could they have ruled out?”

  “Lupus,” declares Dad, all definitive.

  “That’s what I told Dr. Anderson on Saturday,” I huff.

  “We know. Auntie Ruth said you did a great job advocating for yourself,” Mom says as she checks her phone and frowns.

  “What, honey?” Dad asks.

  She shrugs. “Just my sister, asking about graduation again.” Which should remind Mom that I’m the college applicant, where every class and every grade still counts. Instead, she asks, “You sure you want to go back to school? You can rest in your bedroom. In the dark.”

  “Ms. Kavoussi is waiting,” I tell them, but I’ve already missed my meeting with my college counselor, thanks to the phototest that was awful on so many levels: humiliation, pain, and fear. What else could possibly go wrong today? Even if I shiver at that thought, I stalk away.

  …

  So much for the dramatic exit. Sitting in the driver’s seat after a phototest can only be described as uncomfortable. No matter how gingerly I shift, how tightly I grasp the steering wheel, how much I try to rest my weight on one cheek, then the other, I find no relief. I need help of the geek variety:

  Me: SOS. I can’t even sit and I have to drive to school.

  Caresse: Extra padding.

  Aminta: So much for nutritionists saying that cookies are bad for you.

  Caresse: Do you have anything to cushion you?

  Aminta: Even a gnarly towel in your trunk?

  My eyes drop to the sweatshirt Roz tossed on the passenger floor. When I reach down for it, I find her discarded summer reading, the Robert Frost book, crushed under her feet. I can’t help but smooth out the mangled pages, my eyes skimming the poem about woods that are “lovely, dark and deep” and “miles to go before I sleep.” After staying home this last weekend, let me tell you: There is nothing lovely about a darkened room. Yet I have miles to go myself if I want to preserve my future.

  Even though it’s going to hurt, I force myself out of the car, wincing, and rummage for my mud-encrusted trail running shoes in the trunk. I kick off my Adidas. Once my toes wriggle in the familiar footbeds of my thick-soled trail running sneakers, I feel like a semblance of myself. Quickly, I fold Roz’s sweatshirt into a small pillow. What more could possibly go wrong today?

  In answer, my phone buzzes with a text.

  Josh: So Café Nestor today?

  My eyes blur with tears. I wipe them angrily. What the heck am I doing, flirting with another charming flake? Did I really want to be further humiliated? Did I need to repeat Darren today and have my heart shattered tomorrow? These boyfriend dreams are the ones that should go up in flames.

  I type one word.

  Fury, grief, regret, the two letters burn: No.

  I hit the gas and go home.

  My best-laid plans to hide at home and get a head start on the bake sale are no match for the Lee & Li Action Plan. An armada of work vans is assembled in our driveway. What are my parents conspiring now? I hated to imagine. My phone pings, and I nervously check it, only it’s not Josh asking me why I can’t meet, but Auntie Ruth: Are you sick?! What do you need? I’m so sorry! Call me.

  After that deluge of concern, it takes me a full minute in the station wagon to settle down and gear up for whatever’s waiting inside. Even so, I have to suppress a small gasp when I slide out of the driver’s seat. Set my life on fire? My rear is taking care of that just
fine.

  Inside the living room, two older women are so hard at work, measuring the windows, that they don’t even notice me walking in until I greet them, then ask, “So what are you doing?”

  “Your dad wanted a bid for blackout shades,” the woman with a halo of gray hair answers.

  Of course he did. My fist chokes the strap of my messenger bag.

  A gasp—never reassuring—comes from the kitchen, and I hustle over to find a rotund man with a beard that belongs at the end of a squirrel, balancing precariously on a tall ladder, where he’s sticking some sort of film over the skylights.

  “Careful,” I tell him automatically.

  That must have translated into a dare because the Bearded One steps up another rung. “Don’t worry. I’ve got insurance.”

  Which is so not reassuring. Where, may I ask, are the two resident and professional crisis managers now? I point to what looks like Saran Wrap in his hand and ask, “What is that?”

  “Window film.”

  “Let me guess. It blocks UV rays.”

  “Ninety-nine percent of them,” answers Dad as he rushes in from the back door like I’m the one who’s about to topple off the ladder. Sorry, my two feet are planted on terra firma whereas Dad is clearly floating off in space because this in-home invasion of blackout materials is beyond irrational. Nothing about my so-called condition is a fact yet, just fear and speculation. He says, “We’ve been trying to get ahold of you. Wait, what are you doing home so early?”

  I could ask him the same thing if the reason wasn’t so obvious: Lee & Li have declared war on light.

  Dad shifts the brown package in his arms without moving his eyes off me. “Are you sick?”

  “No. I’m fine,” I grit out.

  “Fever? Vomit?”

  “Dad, do you see me throwing up?”

  “Lesions?”

  Lesions? As in ulcerated, weeping wounds? I swallow. “No, I’m fine.” (I was, until now.) “What list are you checking off?”

  “Side effects of the phototest. It’s all in the sheet the nurse gave us.” Dad sets the package down on the counter and slides his phone out of his pocket, frowning, as he texts, no doubt reporting in to Mom: Baby bat has winged home. I repeat, baby bat captured and contained.

  A troubling banging comes from our basement. Suspicious, I ask, “What’s going on down there?” A curse soars up: harsh with a side of terror. I guess hopefully, “Oh, are you getting rid of the spiders finally?” Unless you think Halloween should be a year-round experience, you never, ever, venture down to the basement. Doing laundry in our house is petrifying, an act of supreme courage. It’s not a question of what you’re going to encounter, but how many and how big (The Invasion of the Wolf Spiders, 2017, 2016, 2015, 2014, 2013).

  “Something like that.” Dad takes a swig from his coffee tumbler.

  Thank you, Bearded One, for showering years of dust from the skylights upon us. I sneeze. Dad, unfortunately, spies my blisters before I can lower my hand from my nose.

  “That’s it,” says Dad. Even if his voice is cool and collected on the surface, anxiety churns in his undercurrent. “The school’s getting a letter. Today.”

  Worried, I ask. “Why?”

  “We told the school what the doctors suspected. That you’re sensitive to the light,” Dad continues, his voice picking up indignation. “And all they’ve given us is a pat ‘we’ll look into it.’ Sorry, not good enough.”

  “You can’t force everyone at school to sit in the dark because of me. That’s not fair.”

  “You can’t serve nuts at school because of peanut allergies,” Dad counters, arms spread wide. “No peanut butter sandwiches, a staple of school lunches for generations. That’s not fair, but it’s right.”

  “Yeah, but—”

  “This is for your own good.”

  “Dad,” I say calmly, then ask, “where’s Mom?”

  “Your mom who’s not going to be happy that you left school early?”

  “Yeah, that mom.”

  Dad checks his phone. “She’s on her way home.”

  It’s just two in the afternoon. My suspicion brews, and I narrow my eyes at him. “Why?”

  Dad answers, “You’ll see why the letter’s a good idea. If I pound it out in the next hour, I’ll have time to run it by legal.”

  Legal?

  Dad was going DEFCON Three, a slap on the wrist with the threat of a nuclear bomb behind it. It doesn’t take a whole lot to picture Dr. Luthra making a public announcement during an assembly: “Little did we know that we have our own resident vampire.”

  I yank my hat off and swing it, brim and all, dramatically toward the living room. “Dad, what gives? We remodeled this house for the light.”

  Unhelpfully, the Bearded One on the ladder says, “You’ll still get light through this film. It’ll just block out the UV rays.”

  “See?” says Dad, pointing heavenward. “Behold: light. We’re just mitigating the danger.”

  “Dad.”

  He narrows his eyes at me. “You look really—”

  “I know: pink.”

  “I think your color is more commonly referred to as red,” says Dad.

  “Pink.”

  I choose not to hear Man on the Ladder cough: “Red.”

  The alarm bell chimes loudly: intruder alert. So does the maternal alarm: Baby bat under attack.

  “Red? How red?” Mamazon descends, hurtling toward us as if blood is leaking from my eyes.

  I shrink back. All laws of normal physics bend. The air thickens with motherly concern. Mom charges in with a bottle of aloe vera in her hand. My mother is not stowing a crate of aloe vera in her purse now, is she?

  “Good, you’re home. We’ve been trying to reach you. Here, slather it on,” Mom says as she scrutinizes the Bearded One in the kitchen, then the ladies in the living room. Her voice lowers confidentially. “Let’s go out to the Shed.”

  “Here’s fine,” I say. Privacy may be a virtue in the Lee & Li world, but whatever news she has, I want to hear it now.

  For once, Dad agrees with me. “Here’s okay, love.”

  “Honey,” Mom says slowly, a new script she hasn’t mastered, “the doctor wants to see you. Today.”

  …

  For the record, the third time to Children’s Hospital in a matter of days is not the charm, not when Dr. Anderson’s eyes are distressingly tender when he breaks it to me, “Your skin reacted so fast during the phototest, it’s likely you’ve got solar urticaria. But because your hands also presented with blisters independently, it’s possible that you also have polymorphous light eruption.” His voice actually becomes the same nerdy-excited I hear in Aminta and Caresse when they’re on the brink of an invention. “I even found one study where almost a quarter of patients with solar urticaria also had co-existent PMLE.”

  “And?”

  Dr. Anderson sidles an unconscious look at my parents as if he needs their moral support, but for once, they don’t look invincible. Mom’s biting her lip, Dad’s worrying the writer’s callus on his middle finger. So the doctor straightens his necktie embroidered with helicopters before telling me, “There have only been about a hundred cases of solar urticaria in history, obviously fewer with both conditions, but to date, there isn’t a cure.”

  “You mean, this is lifelong?” I can’t conceal the despair in my voice, as I consider hats and blackout shades and hives and blisters forever. Not to mention the possibility of dying.

  “Not necessarily. There are too few reported cases to know for sure, but some of those cases resolved spontaneously on their own!”

  Spontaneous—nothing in the climate-controlled world of Lee & Li is spontaneous and unplanned. Yet Mom brightens and seizes the word like spontaneity is her new motto. “So it’s possible. What were their diets?”

  Dad adds, “And exercise programs? How much average sun exposure did they have in a given day?”

  Dr. Anderson shakes his head. “We don’t know. There’s
just not enough data.”

  I swallow and ask the question that needs to be answered, “What’s the worst case you read?”

  Dr. Anderson says, “Some people can’t leave their homes.”

  “Oh, come on,” I scoff, edging off the examination table, and stand with my hands on my hips. “Ever?”

  He nods. “For some people, it takes just a minute outside for their skin to react.”

  I look from the doctor to my parents, but they are frozen in not-so-comforting shock, too. My hands drop to my sides.

  Ever.

  As fast as I blink my eyes, tears still blur my vision.

  “There’s a new biologic medication that seems to help with the hives,” Dr. Anderson offers.

  But Dad shakes his head. “She’s not a guinea pig.”

  Dr. Anderson reassures me, “There are lots of other ways to mitigate—lessen—the triggers.” Hastily, he hands me a sheet of paper as if it’s a security blanket. All I want to do is wad it up like the wrecking ball that the facts are. “Solar urticaria is just so rare, and the two conditions combined are even rarer. But we can apply techniques from people who’ve learned to live with conditions like lupus and have to stay out of the sun. That’s the key: Keep out of the sun as much as possible. So, for instance, if you want to swim, wear a rash guard and swim pants.”

  Adieu, bikini summers.

  “Was it the Doxy I took for Africa?” I choke out abruptly because I’m not ready for good-byes yet, not when a headwind of “why’s” presses hard against me: Why me? Why now? Why is this happening?

  “I would have to say no.” Dr. Anderson shrugs, then shakes his head in pure regret. “But we don’t know what triggered your conditions. Viola, we might never know.”

  “Could I really die?” I ask quietly.

  Again, he gives me an apologetic look: yes. Gently, so very gently, Dr. Anderson says, “In very, very, very few cases, yes, some people with your conditions have died.”