She always came back though. That was the silent mantra I repeated to myself whenever the absences seemed to reach a breaking point. Juliet always comes back.
JULIET CAME CLATTERING down the fire escape.
“Did you see me? Did you see me?” She was jumping around like one of the Cat Dancers on the pom squad at Iron County High where we were students but never actually went.
“I saw you!” I said. “What made you do that?”
“What in the world would inspire even you to do something that idiotic?” Rob snapped. “That was screwed up, even for you.”
“What do you mean, even for me? Somebody who’s not a wuss?”
Rob rolled his eyes. “My point is: you don’t even know what you’re doing. People work out for years before they try anything like that.”
“I’ve been practicing it for months!” Juliet’s hair had come loose from its braid and cascaded around her shoulders. Her face blooming in the cold, she looked like a movie star, the only imperfection a little shadow of a cleft in her chin.
When she got mad, her eyes changed color, like somebody had retouched them with gold flecks. Juliet had no scars. Most people with XP who don’t find out until they are two or three years old have a lot of dark freckles: scary dark scars from sunburn. Rob had some on his back and neck. They found out he had it when he was one, and they were pushing him in his stroller at Disney World. Some lady looked at him. His mom thought she was going to say how cute he was, but instead she screamed, “What did you do to your baby?” Rob’s neck and back had morphed into an angry field of huge, dripping blisters.
I didn’t have any scars, either. But they found out I had it before I was born. Ironically, my dad is a genetics researcher. He had a cousin with XP, the fatal allergy to sunlight. (Clinically, Xeroderma Pigmentosum.) So they tested the unborn baby for it. And they found out—yay!—she didn’t have it. Then she was born. Surprise! I did have it. Tests aren’t always right.
Then Dad took off.
Lots of dads do. I hadn’t seen him since I was four. He existed for me as some very nice handwriting in a few letters and a bunch of fat guilt checks that allowed us to own our house and have some nice things. Mom adopted Angela instead of latching on to some guy, which I completely admired her for, because most XP kids are only children.
What makes XP even stranger is that there are seven kinds of variations involving eight genes. Some kinds only affect your eyes and skin. But others involve cell changes from exposure to sunlight, too. Juliet and I have Type A, and Rob has Type C, but none of us have the kind that makes a child start out smart and beautiful but lose more and more every year … reading and drawing and words and steps just disappearing, like water into dry earth. If you can be grateful for something that’s impossible to be grateful for, I was grateful for this small blessing. And for my mom, especially. I couldn’t even imagine trying to raise a kid who was not only doomed to a life without sunshine, but also to lose her mind.
Juliet continued to pirouette before us.
“You’ve been practicing this alone? What if you hit the ground?” Rob demanded.
“What if I did?” Juliet said. “I’d die. Gideon would find me the next morning. Somebody’s going to find me dead sooner or later anyhow.”
As the douchebag Henry LeBecque pointed out, one of the truly extra-terrific things about XP is that you’re forced to live like a vampire, except you’re not immortal. Most people with XP die before they’re forty, although in every other way, you’re totally normal. Juliet lived like she was dying. Some XP people do. Others just hide in the dark and wait.
Nobody said a word.
Juliet finally glared at both of us and growled, “I’m getting my sweater.” In a flash, she hurtled back up the rickety fire escape to the pizza parlor roof and came stomping back down, clearly outraged at Rob—and me, too, although I hadn’t done anything. “Go on and leave. I’ll walk home. I’m taking it you’re not interested.”
Her home was a long, lonely uphill hike from Gitchee.
“Interested in what?” I asked, glaring at Rob, too. “We’re not leaving you.”
“She can do what she wants,” Rob said in a toneless voice. He was shaking out the keys to his Jeep, mumbling about going home early. It wasn’t even three. We hardly ever went home before five. Then he relented. “Get in the car, Juliet.”
Her eyes sparkled in the darkness. “Don’t you even want to try it? Don’t you want to learn? I have two DVDs and some books. It’s the most incredible feeling. Like flying. Like an orgasm while you’re flying.”
“Sounds good already,” I said under my breath. I’d never flown in an airplane or had sex, at least with anybody else.
“I can show you how to be safe,” Juliet encouraged.
“Yes, I could absolutely see how safe you were up there,” Rob replied.
Juliet stopped in the middle of the street, her hands on her hips. “It’s a discipline, Allie. It’s called Parkour, Rob. It was invented, like, fifty years ago in France, and it’s based on strength, speed, skill, self-confidence and safety.” She opened her blue eyes wide. “Safety? Get it? It’s a way of getting so strong you can move as fast as you want past obstacles, or over or under them, without ever being hurt.”
“I’ve seen the videos on YouTube,” Rob said. He was already in the driver’s seat.
“One of the founders said it’s a way of touching the earth and everything on it, being part of it instead of just having it shelter you.” Juliet ran over to Rob’s side of the car. “We’ve had enough shelter, don’t you think?”
“I’ve seen the memorials too.” Rob made air-quotes. “ ‘He died doing what he loved.’ That’s as stupid as one of those stories about how some fourteen-year-old kid’s uncle shoots him while they’re deer hunting and everybody’s okay with it.”
Juliet kept smiling. “Everybody dies,” she said, turning her face so it was out of the light. “But not everybody really lives.”
Within a month, Juliet had converted half of Rob’s barn into our Parkour Skill Gym, with mats and parallel bars Rob’s father had scraped together from work. I wasn’t surprised by how easily Rob caved, and frankly I didn’t care. I’d become alive, like Juliet. I would wake up at sunset sick with pain in my belly and shoulders from the endless crunches and handstands. This is how she must have felt during ski training, I thought. And when that ended … what was she going do with all that excess energy? Within a few weeks, I could leg-press two hundred pounds and do a handstand on the bars.
The three of us were all over the playground at the elementary school, and then all over the bleachers at the high school. At first, we ran the bleachers sideways, skipping up one row at a time to the top, for agility. After we could do that without tripping, we would swing our way down the supports. Rob even stopped saying the word “safety” every five minutes. He was in the thick of it, too. I could hear it in his laugh.
We used the playground equipment to practice vaults until we could hurtle the little merry-go-round touching it with only one hand. (In Parkour terms: a passement.) But while Juliet and Rob mastered the backflip right away, I needed a hundred tries to run up a wall and hurtle backward to a standing position. I never landed like they did. Although I will say in my defense: everything I’ve ever read says that the backflip is not really a Parkour move as much as a show-off move, since the point of Parkour is to get you quickly from one place to another, defying obstacles.
After a series of my progressively more embarrassing wipeouts, Juliet said to Rob, “She’s un-teachable. Allie, how did you ever learn to do a backflip off a pier?”
“I can’t backflip off a pier,” I snapped, with what little breath hadn’t been slammed out of my body.
When I finally mastered it, though, I couldn’t stop. I must have done thirty in one night.
Once in a while, we saw the beam from one of the police cars: Juliet’s dad or one of his friends. They must have thought: Nice. What good, clean fun we were
having, just playing like the kids we were.…
At the beginning, my mom, who—did I mention?—has always had a problem with boundaries, would walk into my room and say, “You’re burning through the Ibuprofen. What are you guys doing out there? This doesn’t seem prudent, Allie.”
But I rarely had a cut or scrape because I soon learned to drop and roll. I would land on the balls of my feet and then tumble to a standing position. To a bystander, it would look like I’d whammed myself, but it was a way of harnessing momentum to land lightly. The feeling of being able to run to the end of a wall twelve feet up and make this controlled dive into mid-air … and knowing you weren’t going to twist an ankle or break your collarbone.… Juliet was right about the sensation. It was a part of something magical. It was like being on the earth instead of hiding inside it. And she was right about that part, too: we’d hidden all our lives.
IN JUNE, JULIET decided we were ready to try a gap leap to a cat grab and then swing down five stories to a ten-foot turn vault to the ground. She was going to set up a camera with a filter to film us. It would be the first “Dark Stars” video feat. Dark Stars would be our “Tribe,” which is what the Parkour “traceurs” call one another. (To perform Parkour was to “trace.” Juliet had memorized all the Parkour terms in French. I had no interest in the words, so I rarely used either the French or English. I was only interested in the action.)
Our launch pad was a six-story building under construction, perched on the bluffs above Lake Superior. Juliet had chosen the spot. From there we would land on the roof of an older neighboring five-story building: Tabor Oaks, an upscale apartment complex. Then we would “lache” (pronounced lachay): swing by one arm to the other from one balcony to the one below it. The bottom-most balconies were differently built, ten feet down and about five feet to the left or right of the balconies above—with nothing directly below them except open space.
If you missed that final move, you would plummet to the grass, thirty feet down. You’d be lucky if you only broke your neck. If you had a lot of momentum, and you kept flying, you’d eventually tumble down to the boulders washed by the waves below. I’d assumed that this was the motive behind Juliet’s choice for the Dark Stars on-camera debut: the thrill, so close to the certain death on the rocks of Lake Superior, and also so close to a bunch of rich strangers who had no taste for adventure.
Of course, Juliet must have known we might glimpse something. Only later did I realize that she’d always known.
OUR TRANSITION FROM the playground to the pit—to the end of an innocence we only saw in retrospect—was abrupt. If you had asked us, Rob and I would have said that we were very mature for our age. People think that, and say that, and we were among those who would have meant that, what with our life-threatening illness. But in fact we were, if anything, slow to “grow up.” I thought of drinking booze and smoking weed and (eventually) having sex as big markers of adulthood. I had no idea how sheltered we really were.
It began on a Thursday, right before I fell asleep in the morning.
Juliet zinged me a text: B ready.
I shot back: ?
Something new and big We R READY! READY 4 MORE! The CHALLENGE!
When?
2 morrow! Juliet replied.
And that was all.
Why so soon? I wondered tiredly. Why tonight?
THAT FRIDAY MORNING, before our epic night of “bouldering”—a Parkour word that supposedly combines the word “building” with “boulder,” from mountain climbing—I had a clinic appointment.
If I had to go to the doctor, it was usually after midnight. Many XP doctors and nurses (my mother among them) worked the red-eye shift for obvious reasons. All the patients in the XP Family Study got free care, so we tried to make it easier for those who did the caring. There were people who’d moved all the way from Wyoming and California. The Siroccos had moved from the Twin Cities, just to bring their kids to the XP Family Study at the Tabor Clinic—the most extensive treatment facility for XP anywhere in the world. They knew it was worth the headache and expense of travel to a lackluster ski resort town, all thanks to the Tabor family.
Dr. Andrew Tabor, who was around sixty, took care of us. His younger brother, Dr. Stephen Tabor, took care of the dead. (At least that’s how I thought of him.) He did research for the XP Family Study, too, but as the county medical examiner. He dissected bodies to figure out how to prevent what kills us, which is usually skin cancer—the worst kind. Every year after New Year’s Eve, the Tabors had a big party for the XP families, and Dr. Andrew would always give the same cheery toast.
“We’re THIS close. Forty years ago, my father, Simon, could never have believed how far we would come.”
Dr. Simon Tabor, who was easily a hundred and still kicking, founded the Tabor Clinic. Why he’d decided to make XP his life’s work, none of us knew—nobody in his family had been afflicted. But half of the year-round citizens of Iron Harbor worked at the Clinic. The Tabors also owned a lot of other places in town, including the canoe and SCUBA rental places, some buildings, and the three restaurants that aren’t Gitchee Pizza. Gideon wouldn’t give in, although they tried to buy him out. He said he wanted to leave Gitchee Pizza to his son, even though he doesn’t have a son and he’s been married four times.
Sometimes, I had to ask myself why, though … why this whole community has grown up around the Tabor Clinic. These families are trying to buy time, basically. Time for what? Time to be with their kids, which used to strike me as selfish if the kid was suffering. Time for the kids to have a life, which is fine, I guess, until they get old enough to know what XP really means.
People talk about “genetic engineering” and “stem cell research” and “DNA repair” like it’ll be available next week at Walmart. But even if God or the government doesn’t forbid it, that stuff takes more time than we have. It takes longer than one short lifetime. Like, ordinarily, people would say to a girl my age: You have your whole life ahead of you. Sure, you have to grow up in Nowheresville, but someday, you’ll remember the huge storms and the loon’s lonesome moans and you’ll be happy you had that girlhood. And that would all be fine except the odds are, this fairy tale doesn’t apply to me. This is my girlhood and my everything-hood. You can’t blame us for wanting to carpe that diem if our diems are numbered.
I went back and forth on this subject. Sometimes, I thought I would be better off if I’d never been born. Sometimes, I thought I would hang on long enough for somebody to find a biological switch that could turn this thing off. There were some adults with XP in Iron Harbor, sure. But not too many. And we didn’t see them much. Juliet and Rob and I were among the older patients.
When my mood was especially black, I’d think of Dennis Ackerman. He was one of my tutors—super cute and the nicest guy. He taught me math and science three nights a week. He tutored other kids who couldn’t go to regular school, too, the ones on chemotherapy or recovering from mono or what have you. But having XP himself, he had a soft spot for us.
Four years ago, at the age of twenty-five, he’d decided he’d had enough.
That morning, my mom came into my room and woke me out of a sound sleep. The look on her face was so awful, in the truest sense, as though she’d seen a vision. I was sure my little sister had been diagnosed with some awful disease, too, or that Juliet, who was still skiing competitively as a freestyle jumper, was paralyzed. In a flat voice, Mom told me that Mr. Ackerman’s mother had found him dead in his car that morning. He had shut the garage and stuffed rags in all the cracks and just let the car run until he fell asleep. I asked if he’d left a note. My mom said he had, and it said that he knew this was a lousy thing to do to his mother and his “kids,” but he couldn’t stand the wait anymore.
I more or less understood that, too. But thanks to Juliet, I had long ago vowed never to go that route.
MY FRIDAY APPOINTMENT got off to a lousier start than usual because I forgot my umbrella. Mom and I fought the whole way to the clinic. Sh
e wanted me to be more serious about my illness. I figured I was as serious as I could get about something beyond my control. With my mom being a nurse, though, she was pretty vigilant. She was over-protective. Let’s be frank: she was crazy. She would have had me bubble-wrapped if she could have.
I was so absorbed in thought about our upcoming expedition that nigh,t I just spaced on the umbrella. It wasn’t raining, of course: I needed an umbrella the size of a palm tree even when the sky was clouded over, which was pretty often in Iron Harbor.
My mom had gone out early for a run with her best friend, Gina Ricci. In addition to being my godmother, Gina was also a nurse who specialized in XP.
When they burst through the door, sweating, Mom rushed upstairs to shower. (Mom held the North American indoor record for speed-showering: five minutes from foot on the bottom step to fully clothed.) Gina gave me a kiss and slipped me a ten dollar bill. One of the benefits of having a chronic illness is frequent monetary giftage. I thanked Gina with a hug—but before my mother could slip into the shower stall, she stopped at the second floor landing and eyed my outfit.
“You’re half-dressed, Allie Kim!” she yelled.
I ignored her. That always lit her fuse.
You wouldn’t refer to not carrying an umbrella as “half-dressed,” unless you were my mother. So much crap to wear just to run from my back porch to my mother’s car and then the ten feet into the clinic! You can’t have one inch of skin exposed. Not for a minute. When I go out during the day, I have gloves and veils and goggles on, so that I look like I’m studying killer bees. She dashed back down and pulled the umbrella out of the closet, shaking it at me like a sword.
My mom is good. A good mom. She so believes that I will outrun XP that I sometimes let her believe it, too. If I live to a ripe old age, her reasoning goes, I won’t want to end up looking like I was deep-fried early in life, will I?