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Photo by John Molloy/Photonica

Photo by John Molloy/Photonica

From a new novel by Elizabeth Graver

Picture your child as one in half a million, with a condition so rare that it takes months, after he's born, for it to be correctly diagnosed. Picture the white cotton weave on his blanket when you put him in his car seat under a tree, how within minutes, the open weave of that cloth has imprinted itself on his skin like a tattoo, a rising, welting rash. Allergies, says the doctor, prescribing cortisone, but meanwhile the infant is still swelling, blistering, his eyes squeezed shut, his mouth an open ring of pain. Picture the hike you take with your baby strapped to your chest, a rocky climb to the top of a mountain in New Hampshire, the fresh young family, the older boy who clambers, sturdy, up the rocks. How the new one cries and cries, howling so hard that as you rush back down the trail, you can think only of wanting to tuck him back inside you, return him, unbirth him.

Tests and speculations, then, charts and results, until—finally—a name: xeroderma pigmentosum. You've never heard of it. The words are twisty, warty, on your tongue. Xeroderma pigmentosum. XP. Flawed DNA repair system. Hypersensitivity to ultraviolet light. Skin cancer, eye cancer, at a thousand times the normal rate. Only a thousand known cases worldwide. The X moves into your house. The P moves in. You gather up the facts, gather up the children. A new planet, this, and you, it seems, the only people on it. Once you were a lover of light, a traveler of lands. Now you darken the windows, batten the hatches, close the doors. Slowly, as time passes, this begins to feel like all you've ever known. You grow accustomed to the dark. You live—you often even love—your life.


IT WAS mid-February of Max's ninth year that I first showed him the camp on the computer. It was close to midnight; we were taking a break from his lessons, Ian and Adam asleep. The link to Camp Luna sat on the XP Society's home page below a photo of a canoe on a lake. There were two kids in the canoe, wearing tank tops and orange life preservers and holding their paddles aloft. You could tell from their red pupils that a flash had gone off, but still the photo had an air of light about it, the glint of water, the reach of arms. Perhaps it was this image, newly posted, that made me bring the camp up to Max, when other nights I'd passed it by. Or maybe something else: a readiness. I went to the link; I clicked.

"Come see," I told Max. "It's about a camp for kids with XP."

He slid into his desk chair, and then we were there, on the black page with its winking yellow moon, while outside the real moon shone and, next to me, my boy's eyes looked at a screen that might, for once, lead into a world of actual flesh and blood. I started skimming the text on the home page: Secluded lake . . . for children with XP and other light-sensitivity disorders . . . limited spots . . . free. (Could it be true? How had I not noticed it the year before?)

Before I could read further, Max took the mouse from me and clicked on an icon that led us to pictures of the previous year's camp. There were children mugging for the camera and gathered around a campfire, girls with their arms draped around one another's shoulders, kids angling toward a volleyball. Max studied the photographs. I watched him watching, tried to let him be. He'd only ever met two other children with XP, both at dermatology conferences where we'd gone to meet the scientists and look for help. Those kids had been much worse off than Max. One had been diagnosed late and had needed over 40 surgeries to remove cancers; the other had the strain of the disease that leads to neurological damage—at 12, she was deaf and could neither walk nor talk. Max clicked again and we saw a lake, a string of lights, three adults on a bench, holding up some sort of papier-mâché beast. Again he clicked. A child looked out at us, his skin pocked, his grin lopsided as if part of his jaw had been sliced off.

"All right," I told him, my voice thin, but still he wouldn't stop. He went through all the pictures, once and then again, leaning ever closer.

Finally, he sat back. "Say we're coming. So they save us a spot. Okay?"

"Hold on, sweetie," I said. "We need to talk to Dad first and figure out our schedules. He has summer school, and Adam's signed up for soccer camp, remember? There are a lot of things we'd need to find out."

"Dad—" he started to call, heading for the door.

"No." I got up and stopped him with my arm, then leaned back and clicked us to the home page, away from the wounded boy. "Tomorrow's a school day. We'll ask him later."

I didn't tell him that I had, in fact, read about the camp on the listserv the year before and suggested it to Ian then. He had dismissed it for a hundred practical reasons and (though he didn't admit it) a deeper one—he didn't want Max dumped into the collective stew of the disease. I hadn't pushed. I hadn't even investigated further. We'd grown comfortable in our lives, all of us wary of change. Instead of camp, we'd gone on a short vacation to southern Maine, staying in Ian's cousin's empty summerhouse. We took the kids to an amusement park one night and to an outdoor movie on another. On our last night, we raced down a long beach, singing and throwing pebbles into the phosphorescent tide.

All that was nice, but the house had picture windows we had to cover with flattened cardboard boxes and black garbage bags, and the town was so small that no stores stayed open late. When we walked down Main Street in the late afternoon, people stared at Max, who was covered head to toe—ski mask, sunglasses, high-tops, gloves. Yes, we know it's hot out, I'd wanted to shout. Keep your eyes to yourselves! But oh the sea was vast, and the paths outside the house were lined with crushed white shells, and everything tasted of salt. I came home with both a renewed hunger for the outside world and a newly kindled anger at its obtuse and sunny ways. Was this the beginning, a gradual tilting of the scales? Next year, I remember telling Ian, next year it's my turn to pick.

Now Max stood by the door and hopped from foot to foot. I squeezed myself between him and the door. "Let's do some spelling."

"No, Mom, please." His voice rose. "Really, he won't mind if I wake him, he never—"

"He needs to sleep so he can work tomorrow. You know that. Okay, camp. Four letters, starts with . . ."

He sighed, then rattled it off.

"Yes. Luna."

"Um. L-U-N-A."

"Great. Marshmallow."

"M-A—I don't know. What if tomorrow there's no room left?"

"That won't happen overnight. Sound it out, possum, you were doing great."

"Do they eat them there?" He twined his arms around me, smelling of soap and the faintest glaze of sweat.

"Possums? I hope not."

He swatted at my behind. "Marshmallows."

"Oh. Probably. It's a camp."

"Can I go, Mama. Please?" Butterfly kisses up and down my arm.

I kissed him back, once, on the nose. "I think there's a good chance. We can try to work it out for a week or two—that's all I can say right now. I'm sorry. I need to talk to Dad."

He detached himself from me and began tearing around his small room, loping past the closet, climbing the bunk bed, jumping down to trace his hand along the windowsill, where he stopped to play with a corner of the window film.

"Don't peel it," I warned. "Try to settle down. After spelling, we can go outside."

"Adam goes to camp." Now his voice was bitter, almost defeated. "Everybody goes except for me." He threw himself onto his bed and spoke into his pillow. "Why won't you just say yes?"

Photo by Lisa M. Robinson/Photonica

Photo by Lisa M. Robinson/Photonica

I should, of course, have made sure the camp was certified, real. I should have asked Ian first, consulted Adam. We were a tight, well-oiled machine, my little family. When one part moved, the rest followed; things rarely happened without consultation, by themselves. I looked up. Max's eyes watching me over the pillow were too wise for a child his age. It was partly the faint web of wrinkles around them. It was partly the longing there, the way it was all bound up with too much knowledge—of the danger of just one minute under the sun for this boy born into the wrong elements, a fish spawned out of water, a land bird hatched under the sea. He asked for so little, really, when it came down to it. He lived with such grace inside his box.

"All right," I told him. "You can go, if they have room."

He smiled broadly, a child again, and sprang up, high-fiving the air. Then he stopped, suddenly serious. "Will you come with me?"

I nodded. "It says the families go, too." Already I was panicking at having made a unilateral decision, but I also knew I couldn't undo it, not once I'd said the words.

"And Dad and Adam?" Max was almost shouting.

"Shhh. You'll wake them."

"We'll all go," he said happily, as if everyone had just agreed.

The spelling words I chose that night all had to do with summer camps, though I'd never attended one myself— swimming, lifeguard, firefly, cabin, badge, craft, mess kit, outhouse, matches. Max tossed them back at me, always a good speller, and then we stopped so he could go downstairs for recess, a half-hour romp around the yard.

As I stood on our back stoop, I knew he wasn't alone there, not like he usually was, a boy running solo through the cold night air while up and down the block, the neighbors' children slept. He wasn't there at all that night, though his body circled and his lungs drank air. Already, I knew, Max was chasing after the children he'd seen on the computer screen. They would gather; he would gather with them—rare moths, regular old kids. He was throwing twigs onto a bonfire and watching them burn, kneeling by the lake, draping his arms around his friends to pose for the camera, their eyes briefly blinded by the flash.


THAT YEAR, Camp Luna ran the first three weeks of August, and while it wasn't a long period, somehow time seemed to slow down. There were 11 XP kids our first year, plus siblings and parents, close to 40 people in all. There was Étienne from France, his sister, Natalie, and their parents, Françoise and Henri. They wore ironed T-shirts, that scrubbed, polite French family, and folded their cloth napkins in small triangles, like flags. There was Anil, come alone all the way from Nepal, his airfare paid for by the camp. He was 18, the oldest of the XP kids. He'd had two siblings with XP—both of them dead now—and a pocked face and body, a wistful smile.

There was Nicole from Alabama, daughter of Carole and John, the type who might, in another life, have been a cheerleader, a sunbather. There was Helen, the girl who could see by night but not by day, and her parents, two sweet economists who squinted at the world through thick-lensed glasses. There was Carl, son of Josh and Angela, who'd had a malignant melanoma excised six months before and had just finished his course of chemotherapy, and Sara, whose left ear had been removed to take the cancer with it. There was seven-year-old Andy, who had XP and stayed close by the side of his fraternal twin brother Russ, who did not. There were children with skin smooth or scarred, freckled or clear. The lucky ones, like Max, had been diagnosed early. The others were like a fast-forward movie, the aging process quickened. You might, had you stumbled into one of the bathrooms in the lodge, think you'd come across the accessories of a theater troupe, the sills and sinks strewn with bottles of lotion, cakes and tubes of makeup, sunglasses and hats.

There was Alida, of course—Hal's only child, born when he was 42 to a mother who died when her child was not quite one. There was Tommy, Marnie's son, the flukiest fluke of all in that he'd come—half of him had—from a sperm bank, a catalogue of anonymous donors. Marnie and her girlfriend at the time had gone over and over the list, finally settling on a cluster of features that appealed to them: dark brown eyes, a love of animals, a highish IQ score, no known family history of mental illness. Good genes. I once read somewhere that 99.9 percent of human genes are identical. It's the 0.1 percent that spins us off, makes us who we are—takes, sometimes, our very lives.

Photo by Lisa M. Robinson/Photonica

Photo by Lisa M. Robinson/Photonica


IT WAS CLOSE to five o'clock. Day was, as they say, breaking—like an eggshell or a vase. We were quiet walking back up the lawn to the lodge, Marnie's arm around Tommy's shoulder, mine around Max's, and though it wasn't yet light, I could see the sunrise before it happened. Other people were heading to bed, too, moving faster than we were. Hal passed us and whispered hello, Alida asleep in his arms. Nicole, Jess, Amy, the twins, and Étienne passed us, still talking; I could hear him teaching them French words.

I climbed the stairs with Max to the room he shared with his brother and found Adam asleep on one bed, still in his tank top, cutoffs, and sneakers, and Ian asleep on the other, the night-light glowing in its outlet. I started to wake them, then thought better of it. How peaceful they looked, each curled around a pillow, facing each other. In sleep, Adam seemed younger and less guarded, and I remembered how I used to watch him doze when he was just a few months old—the twitching, veined eyelids, the mouth that moved from a pucker to a half smile to repose, his thoughts opaque. I used to think that once my children learned to talk, I would gain access to their inner lives, but their words were just as often screens as entry points. Fine, Adam would say lately when I asked him a question. Good. No problem. Sure. Whatever. My affable baby had turned, on the surface, into an affable 13-year-old, but meanwhile his fingers were worrying at the pimples on his chin; his eyes were glazed, or glaring, or far away.

I bent to take his sneakers off. I pulled a blanket over him and kissed his forehead. Still, he slept. He and Ian had spent the evening together. Ian had suggested it after I'd told him I thought Adam seemed a little lost. I'll take him on a canoe ride or walk, he had said. Something where we can talk. That's a good idea, I'd answered, but now I wanted to know what they had said to each other. More and more, Adam seemed to be entering a realm where I wasn't welcome. Did they talk about girls as they paddled across the lake? Did they discuss wet dreams or soccer strategies or mortality, or just sit in easy silence, something Ian has always done well?

I took Max's pajamas from where they hung on a hook. "Come," I whispered. "Let's not disturb them. You can sleep with me." . . .

"Do you think Arno is okay?" Max asked, of our gerbil back home.

"Yes, of course. But we can check with Rachel tomorrow."

"If Arno gets out again, he'll dig a maze of tunnels in the yard, not just for him but for the moles and chipmunks, and they can call it the Arno-reum." He snorted with laughter. "And they'll have races and I can watch through one of those scope things, like on a submarine, you know, except we have to light it somehow, and then maybe—"

"Then the animals will say, Sleep, Max," I interrupted. "Sleep, Mister Max, so you can be bright and bushy-tailed when you get up."

He squirmed beside me. "I'm awake. Where's Dad?"

"With Adam, remember? Sleeping next door."

"Where's Tommy?"

"Everyone is sleeping. It's that time."

Which was, of course, the farthest thing from the truth, since all across the state, all across the eastern seaboard, alarms were going off, people were rising, days starting. A woman stumbled into the shower, tipped her head back, lathered her hair. Another woman stepped outside into her garden for a few moments of quiet before the kids got up. Sixteen-wheelers turned onto highways, cars pulled out of driveways. In coffee shops, waitresses measured coffee into filters and pressed start.

And so the world rose. And so we moved toward rest, Max's thoughts traveling underground, mine into the waking world. Arno and the chipmunks, he saw. Arno and the mice. Arno nose to nose with a mole, an animal capable of only the simplest kind of seeing, the distinguishing of light from dark. How nice my boy smelled; I had nearly forgotten. How particular to him were the bends and turns of his mind. This child and no other.

 

Associate professor of English Elizabeth Graver teaches fiction and nonfiction writing at BC. Her novels include The Honey Thief (1999) and Unravelling (1997). Her story here is drawn from Awake (copyright 2004 by Elizabeth Graver, reprinted by arrangement with Henry Holt and Co.).

 

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