Midnight Sun

2

There I go, rambling again. It’s a habit that gets me in trouble sometimes. You’ll see. For now, let me back up and start from the beginning.

Hi! I’m Katie Price, and I guess from the outside looking in—if you could actually see in my windows, which you can’t, thanks to the solar shades that block every bit of UV light from getting in my house—you might think I’m some pathetic sick girl who’s always staring out the window watching life go by. But I’m actually just like everyone else, with the major exception of the “can’t go out in the sun” thing.

I play guitar and write lyrics and poetry and think I sound awesome when I sing in the shower. I love astronomy and hope to be an astrophysicist someday. I hate brussels sprouts, love Chinese food, think pugs are the most adorable dogs on the planet, and get freaked out by spiders. My best friend—let’s face it, my only IRL friend other than my dad (okay, that right there just made me sound truly sad, right?)—Morgan, kicks butt and would for sure kick your butt if you don’t agree.

And, oh yeah, I just so happen to have an enormous crush on a guy named Charlie Reed. Ever since I got banished to this house during daylight hours by my XP diagnosis in first grade, I’ve watched him pass by my window on his way to school. Over time, watching Charlie go by became a part of my routine. Along with constant doctor appointments, sleeping during the day and staying up all night—which from what I hear is the dream schedule of most kids my age—and playing music. During the week, he’s the last person I see every morning before I go to sleep and the first person I see every afternoon when I wake up. While I’m getting my “night’s” sleep, he goes off to school and swim practice. He’s living his normal, perfect life. He’s basically grown up right in front of my eyes and gotten cuter with every year. He’s a senior now, tall and lanky with gorgeous floppy hair and eyes that could melt an iceberg faster than global warming. The only thing standing in the way of our great love affair is… he has no idea I even exist.

When he dragged our trash can out of the street after a windy night—after literally everyone else just walked by it—he didn’t know I was watching. When he stopped to help Mrs. Graham from across the street with her groceries. I’ve seen the thoughtful little things he does, even when he thinks no one is around to notice.

It’s not like I can just walk out my door one morning and casually bump into him on the street because then I’d fry to death. (Don’t worry—it wouldn’t happen that fast. But, trust me, it wouldn’t be pretty.) I would be lying if I said I didn’t fantasize about one day making a grand gesture, though. Like, I don’t know, bang on the window when I see him. Wave him into the house (when my dad’s not looking, I guess). Invite him upstairs. (Where my dad won’t follow us? Ha! Let me dream.) Run my fingers through that gorgeous hair. Kiss him.

Fine. Not going to happen. I know.

I’ll just watch him like I always have (in a totally noncreepy way!)—at least until that unfortunately placed tree blocks my view—and wish him well on the stars when they come out tonight. Wish that he’s happy to be graduating high school today and that he’s headed for a life full of excitement and adventure. That he gets everything he ever dreamed of. He deserves it. We all do. My biggest wish (to have a normal life—trying not to be bitter here) will never come true, but I sure hope Charlie’s does.

I open my laptop to watch the live stream of what would have been my graduation, too. That is, if I hadn’t been homeschooled since first grade. It’s a little anticlimactic for me, seeing as I’ve already accumulated enough online credits to be a college sophomore at this point. What can I say? I like learning. Plus, I’ve got a lot more time on my hands than most kids.

Still, it’s graduation. A defining moment in most people’s lives. Not sure it symbolizes anything more than the same old same old in my case, though. Come the fall, I’ll still be sitting here in my room, taking classes online, endlessly avoiding the sun instead of heading off to some fabulous university. Sigh. Somehow I’m feeling nostalgic nonetheless.

Names are called, and kids stream onstage to shake the principal’s hand. They leave clutching a newly minted diploma. Morgan heads for the camera instead of the stairs after getting hers, then strikes a pose and mouths, Yeah, bitches! She’s quickly redirected back into line, but not before I laugh so hard I snort. I wasn’t sure she’d actually go through with it—but when have I ever known Morgan to back down from one of my dares?

I impatiently wait for them to get to the Rs. Wow, there are a lot of Ps in this class (minus this one, of course). And a Q? What are the odds? (Ooh, poor girl. I assume Quackenbush was not a high-school-friendly last name.) They’re finally calling Charlie’s name. I can’t wait to see how dignified and handsome he looks in his graduation gown, how melty fabulous those eyes are under his cap. Just as Charlie steps into the frame, my dad bursts into my room.

“Katie Price!” he booms.

He’s standing there with a goofy grin on his face and a rolled-up piece of paper in his hand. At this point, most girls would probably yell something like “UGH! Would you PLEASE get out of here.” But I know he’s only trying to make me happy and feel included, so I close my laptop and laugh instead. He has, of course, put in the extra effort; why not let him feel good about it? It’s not his fault I’m sitting on my bed right now instead of walking across that stage with the rest of my class.

Wait, I take that back. It kind of is his fault. Make that half his fault and half my mom’s. Both needed to contribute a mutated recessive gene to give me XP. Whatever. He didn’t mean to, obviously.

“What are you wearing?”

“The faculty and staff always wear a cap and gown, and so do the students,” he replies, holding out the hat part of the getup.

I take it from him and put it on. He hands me the hand-printed diploma that states I am now an official homeschooled high school graduate. There’s a little footnote that acknowledges I already have twenty-four college credits to my name. I smile up at my dad and shake his hand. Mostly, and especially at times like this, I like how well he knows me. He understands how much value I place on my academic accomplishments, since learning is one of the few things in life the sun can’t screw up for me. Dad understands I’d rather stand out for my brains than for inheriting a disease that affects only one in a million.

“So, as valedictorian, I assume you have a speech prepared?” he asks.

I adjust my cap and think about what I can say to commemorate this really-not-all-that-special day. “Well, I would definitely like to offer a great thanks to my headmaster,” I begin.

“Ah, well, you’re welcome,” my dad says, his eyes twinkling.

“And my Spanish teacher—”

“De nada.” He tips an imaginary hat.

“And my English teacher—”

My dad gives a little bow here. “It was my pleasure!”

“And state again for the record that my gym teacher had no idea what he was doing.”

Dad throws a hand over his heart. “Oh, that’s a low blow,” he exclaims. “I was going to give you this card, but now…”

He dangles it close to me, then snatches it back when I try to grab it. I shrug like I don’t care. He admits defeat and drops it gently in my lap, then plops himself down on the edge of my bed.

I reach into the oversize envelope and pull out a card. It is cartoony and corny, and features a smiling star wearing a graduation cap. Emblazoned across the front in cheeseball Comic Sans font it says: ConGRADuation, Superstar!

I roll my eyes. “This is the dorkiest card I’ve ever seen.”

“I know,” he says with a grave nod. “I went to three stores to find a card that lame. All right, are you ready for your present?”

“Present?” I wasn’t expecting a gift. “What present?”

My dad jumps up and hustles out into the hallway. He comes back a few seconds later carrying a weathered guitar case with a single red bow on it.

I already know that inside is the most gorgeous instrument I’ve ever seen, with a cool tortoise-colored sunburst body and inlaid mother-of-pearl frets. I pick it up gently and run my hand along its smooth surface until a tiny set of grooves stops me. I look down at the spot where my fingers have come to rest and see the initials TJP. My mom’s initials.

I look up at my dad, and before I can say thank you, he says, “You’ve outgrown that kids’ guitar,” gesturing to the one in the corner of my room. “But I know this one is old, so if you want a newer one—”

I shake my head to cut him off before he can even finish the crazy thought. Having Mom’s guitar is like having a small part of her with me always. The thought fills a tiny bit of the gaping hole in my heart she left behind, the one that will never fully heal. “I love it. So much.”

I stand up to hug him. He hugs me back, holding on tightly. We’re probably both about to burst into tears. I let go to try to regroup. Awkward silence ensues.

“All right, well… try to get some sleep,” he finally says, giving me a kiss on the head. “I’m proud of you, Peanut.”

No need to feel sorry for me about my life of sleeping during the day. It’s probably the most normal thing about me. I know this for a fact because there are tons of people—including kids my age—online all night, every night, and it’s definitely not because they’re forced to live an upside-down life like mine.

I’ve found a couple of online communities for people with rare diseases, and even though I’ll never meet any of these people in real life and we all have different symptoms and are at different stages in our diseases, it’s nice to know they’re out there.

The Internet is full of info about XP. I learned about a small village in Brazil where one in forty people have XP, which is insane for a condition that usually affects only one in a million. And in the Navajo population, it affects one in thirty thousand. What’s that about?

And I’ve followed chains of people off of Morgan’s social media—some of them people I used to know. It’s shockingly easy to spend an hour going down the rabbit hole of a stranger’s life. I stalk their Facebook statuses and Snapchats and Instagrams and blogs, watching how easily they navigate the world with undisguised FOMO. I consider trying to make friends with the ones I seem to have the most in common with; I type comments and the perfect replies to their captions. But I never actually end up posting anything or DMing anyone to try to forge a new relationship. Because how disappointing and awkward would it be if the person I reached out to reacted to my XP the same way the kids I used to go to school with back at Purdue Elementary did?

Zoe Carmichael had been the absolute worst. It’s not like we’d ever been friends, but we weren’t enemies. When I got diagnosed after a school trip to the beach that ended with me in the emergency room because my skin burned so badly, she started a rumor that I was a vampire, and that was that. Everyone was terrified of me, they started calling me Vampire Girl, and no one but Morgan would even talk to me anymore. Charlie had just moved to town and joined our class that year. We’d never talked (because back then I was all, Eww, boys), but I remember that when some of his friends were making fun of me he told them to stop and smiled at me apologetically. That was my last day at school. After that, my dad homeschooled me. And we started getting ice cream and going to the movies in other nearby towns just so I wouldn’t have to endure kids like Zoe (or actual Zoe) staring and pointing at me whenever we ventured out at night.

And that’s pretty much why I figure it’s better to stick to who and what I know than take a chance trying to branch out friendship-wise in the real world. I refuse to give any more bullies an invitation into my life.

3

I wake up from my “night’s” sleep to a ruckus outside my window: car horns blaring, kids whooping, general celebrating. This part I know I could participate in—if only Morgan actually liked anyone in our graduating class. Which she doesn’t. And if Morgan isn’t going to whatever parties might be happening right now, that means I’m not going either.

And… scene.

So there’s no way I can go without Morgan. And she’s stubborn as anything about not “fraternizing with the snotty girls and fratty boys in the popular crowd at PHS, especially that flaming crotch rot Zoe Carmichael.” Even though it’s not like I think we’d have the best time ever if we were celebrating with our class tonight, we could probably avoid Zoe and her crew, and hang with the nice people instead. There have to be at least a few, right?

There’s a song by an Australian singer-songwriter named Courtney Barnett that I feel like sums up my entire existence as it pertains to parties: “I wanna go out but I wanna stay home.”

I sigh and throw the covers off my bed. My eyes land on my new guitar, and I decide to head to the train station to try it out. By myself. Just me, myself, and I. If I can get my dad to agree to my plan, that is.

I hope he realizes how much I need my independence right now. Years of hanging with my father in places kids usually hit with friends—the movies, the mall, the bowling alley, the fro-yo joint—doesn’t do much to dispel the impression that having XP somehow makes me a superweird person. I know Dad does everything in his power to give me a normal life and I appreciate it, but his efforts don’t change the fact that the way I have to live is not now and will never be normal. Like when he watches a different movie in the same theater complex so I won’t be the loser girl who went out with her dad on a Saturday night? Not normal either. Because who goes to the movies alone on a Saturday night? Right. No one but a superweird loser—and me. Which people generally would assume are one and the same.

Tonight I just want to be Katie the normal girl who doesn’t have a rare disease and whose father doesn’t follow her around nervously all the time.

I toss my hair into a messy bun, grab the case, and head downstairs. I look for my dad in the den. He’s not there. I try the kitchen next; maybe he’s having a snack. Nope. There’s only one place left. I go to the basement and see the telltale glow coming from underneath the darkroom door. I knock.

“Come on in!” Dad calls from inside.

When I open the door, I’m hit by how bittersweet the vibe is in here. The walls are plastered with magazine covers he shot in exotic locales. There’s an impoverished village in India. An arctic glacier rising out of a churning gray sea. A tranquil savannah in Africa punctuated by a lone giraffe. Glimpses of a life that once was and isn’t anymore. It makes me proud of all the things my dad used to do and be, and sad he doesn’t go anywhere anymore because of my “condition.” Proud that my dad is so talented, and sad he’s wasting it on this nothing town.

He’s got a bunch of newer shots hanging from a clothesline. In addition to a few landscapes, there are a ton of me. Candid pictures, ones he badgered me into posing for, and now the latest from earlier today: me playing Mom’s guitar. Most of the other ones embarrass me, but I kind of like how I look there.

“That’s a good one,” I say.

He points at me hovering above the gorgeous guitar. “That part is kinda weird, though.”

I playfully punch him in the arm. He laughs and dodges away. I’m grateful for his relaxed mood; it’ll be easier to convince him to let me go out alone tonight. It’s not that I mind that he always finds an excuse to tag along. But how will I ever get honest feedback about my songs with my daddy standing right there next to me?

“Any schmuck can take a good photo of such a beautiful subject,” he says.

I roll my eyes and walk over to one of my favorite photos of his, a group of Pakistani girls in school uniforms outside a worn-down building. “Now this is a beautiful subject,” I say, turning to face him. “How can you not miss it?”

“All that travel?” My dad scoffs. “It was miserable.”

He moves elegantly through the room. He makes taking and developing great photos look easy. But I know better. He didn’t become one of the most highly sought-after photojournalists in the world by being a hack. He notices my expression, the one that says, Come on, now. You can’t expect me to believe that.

“I’m serious,” he insists, nodding at the photo I’m standing in front of. “That trip, somebody stole my bags and I ended up wearing the same clothes for a week. I had to sleep on my guide’s floor, no mattress, no blanket. It was so cold I just lay there all night waiting for the sun to rise.”

He’s full of it. Of course he misses that life. Who wouldn’t? I’d give anything to be able to go anywhere in the world anytime I wanted to and see everything I’ll probably never get to see.

“I’d much rather sleep in my own bed and teach younger knuckleheads how to go out and get dirty,” he concludes.

“You’re a terrible liar,” I tell him.

He gives me a look, like he’s about to divulge something more than the always happy, always positive front he always puts on for me, but then he seems to think better of it. Nothing to be gained from opening that particular can of worms, I guess, but for once I’d love to have an open, honest conversation about how XP has changed just about everything in our lives. I’m the reason he can’t follow his dreams anymore, and we both know it.

“So what’s up?” he asks instead.

I take a deep breath and then let forth a fast stream of words. I figure that way he has less of a chance to get a word in edgewise, which translates to less of a chance of his saying no. “I was wondering if I could go play my new graduation present at the train station tonight?”

It comes out like this: I​w​a​s​w​o​n​d​e​r​i​n​g​i​f​I​c​o​u​l​d​g​o​p​l​a​y​m​yn​e​w​g​r​a​d​u​a​t​i​o​n​p​r​e​s​e​n​t​a​t​t​h​e​t​r​a​i​n​s​t​a​t​i​o​n​t​o​n​i​g​h​t?

I add a huge smile at the end, meant to convey: I am a competent, confident high school graduate now (with twenty-four college credits!). I am fully capable of walking half a mile down the road and playing my guitar for any late-night commuters who happen to be around. Which will probably be no one, but still. I already checked, and Fred, the station manager, will be there, and you guys have known each other since you were a kid so I will be safe, I promise. PLEASE DON’T SUGGEST COMING WITH ME.