How Do I Love Thee (4 page)

“What do you think of the place?” Dr. Packtor asked.

“It's big.”

The doctor laughed. “Listen, we've gotten your records, which I've gone over. It seems you received excellent treatment and that the chemo protocols did the trick. There was no sign of cancer in your last checkup.”

Brett gave his mother a “see-I-told-you” look. Sometimes he wondered if she hated to let go of his illness because it meant letting go of him. It made no sense to him that she'd think that way, but nevertheless, it was often the way she acted.

“I only want Brett in your system,” his mother said. “Just in case.”

“He's in our system,” the doctor said.

“This thing's behind me, isn't it, Doc?” Brett asked.

“Can't say for aire. You know, years ago, leukemia was a certain death sentence. Now we have patients experiencing ten- and fifteen-year remissions.”

“So I'm not cured?” Brett felt his heart squeeze.

“I never use the word ‘cured’ when talking about cancer. That's why you come every year for a checkup. You're looking good, and we'll stay on top of it. If you experience any unusual symptoms, call me.”

Brett disliked the lack of optimism in die doctor's tone. Why couldn't he just say, “You're fine and cancer will never come your way again”? It would be much kinder.

Brett stood. “Are we finished?”

“Unless you have questions, yes.”

Brett saw several on his mother's face mid was grateful when she didn't ask diem. She was always scared for his health. “I have one,”
he sad. “But it's not about leukemia. This hospital treats all kinds of diseases, doesn't it?”

“Kids with diseases—no matter how rare-are our specialty, What do you want to know about?”

“A disease that a kid's born with that makes them allergic to the sun.”

Dr. Pastor looked thoughtful. “You mean a sun rash?”

“No. Getting burned, burned really bad, if the sun even touches their skin.”

His mother grimaced.

“Perhaps you mean
xeroderma pigmentosum
, or XP for shorts We call them Children of the Moon.”

child of the moon—yes, that described Shayla perfectly. “Can you tell me about XP?” Brett asked.

“It's a genetic disorder,” Dr. Packtor said. “Victims’ DNA repair mechanisms don't work properly, making them severely sensitive to ultraviolet radiation.”

“Sunlight,” Brett said.

“Actually any kind of UV light, but sunlight especially. There's no cure for XP, but fortunately, it's rare—maybe only a thousand cases worldwide. Kids from all over the Northeast come here for treatment.”

“What happens to people with XP?”

“Every time they are exposed to UV light, their DNA is irreversibly damaged. They're very susceptible to eye and skin cancers, melanoma being the worst of the skin variety. Even normal people can get melanomas. That's why we tell people not to get sunburned and to use sunscreen faithfully.” He shrugged. “But they don't listen.”

“So a kid with XP can't ever get well?” Brett's heart sank.

“No, but some cases are worse than others. Many XP victims also have severe handicaps, such as blindness, deafness, even mental retardation. Most victims die young. It's imperative that they limit sun exposure, which means turning themselves into night people. It's a hard life, especially when they're kids. But there is a kids’ camp. Every year Camp Sundown is held in July in upstate New York for three weeks. The kids sleep all day, play all night.”

“But isn't there research going on to help these children?” This came from Brett's mother, who sounded aghast.

“There's always research, but because so
few people have it, it's not a high priority. Sad but true.”

“So if Brett had had XP instead of leukemia, then he wouldn't have had
any
possibility of getting well? “

“True,” said Dr. Packtor.

“Sucky,” Brett said.

In the car, driving home, Brett's mother asked, “Why did you ask about XP? Do you know someone with it?”

“I've heard talk at the burger joint about an XP girl who lives in our town,” Brett said, unwilling to talk about Shayla or endure endless questions from his mother about how they met and so on.

“I can't imagine raising a child with such a disorder. Her parents must go to extraordinary lengths to cope.”

“It's no piece of cake for her either,” Brett declared.

“I'm sure that's true, but can you imagine what her parents’ lives must be like? They still have to hold down jobs and live in die daytime world, yet their child can't. What a heartache. I'm so glad XP isn't your problem.”

“At least her parents can come and go as they please,” he said. “They aren't pinned under glass where everybody who's normal can stare at them and make diem feel like an outcast.”

His mother gave him a quizzical look. “What's gotten into you? All I said was I felt sorry for her parents.”

“And I feel sorrier for her,” Brett fired back. “Her parents can walk out the door. She can't.”

The veiled reference to his father made his mother withdraw. Instantly he felt bad about firing the shot. Brett's diagnosis had contributed to his father's leaving. He hadn't been able to handle having a sick son who could die suddenly. Just one more reason why Brett wanted to be cured—it was an act of defiance, proof to his father, who never saw them anymore, that leaving had been an act of cowardice.

When Brett got off work on Friday night, he hunted down Bud's Pizza Palace.

“Hey, Brett!” Dooley called out as soon as
Brett walked in the door. “Where have you been? I've been telling the gang about you, but you never showed up. We were all beginning to think I was hallucinating.”

“Been busy,” Brett said. “But I've got a rhythm now, and so here I am.”

“Let me introduce you around.” Dooley pointed toward a cluster of teens, gave them names that included Hal, Roberta, Sandy, BJ, Toby, Susan, Kyle, and Blake.

Brett tried to keep up, but the faces sort of blurred together, and he wasn't sure he could put the right name with the right face. “Hi,” he said self-consciously.

“You shoot pool?” Dooley asked.

“Some.” In truth, Brett was a good pool player. He'd spent many hours perfecting his game when he was recovering from the devastation of leukemia treatments, too sick to go to school. He had played against himself and, when he was well enough, against his next-door neighbor, an elderly man who taught him much about the game. Brett liked pool better than computer games. He liked the geometry of it.

Dooley racked the balls. Brett was nervous, so it took him a while to hit his stride, but he was soon being looked at with respect by Dooley and his friends.

“Where did you learn to play like that?” BJ asked.

“I just picked it up over time.”

“Seems to me like you spent a lot of time at it,” Susan said. She was one of the better players in the group, “Seems to me you suckered us.”

“Hey, stop dissing my man,” Dooley said. “They're just jealous,” he added to Brett.

“No need to be,” Brett said, pleased that he had a skill that impressed the kids he'd be going to school with in the fall. “It's only a game.”

“I could use a few lessons,” Sandy said, sidling up to him.

The others made kissy sounds. Brett felt his face turn red. It wasn't often a girl noticed him, much less hit on him. “I'm working a lot,” he said lamely.

Sandy leaned toward him. “Well, if you ever find yourself with time on your hands, give me a call.”

More teasing from the others, which Sandy ignored and Brett laughed off.

Eventually Brett told them he had to leave. They invited him to come again, which he promised to do, but all the way home he wondered how they would feel if they knew he'd once had cancer. Probably not nearly so friendly. People were afraid of cancer, and kids were downright cruel about it. He'd never forget the sense of ostracism he'd felt in middle school.

When he arrived home, his mother had gone to bed. A lamp burned in the living room, and a note was stuck on the refrigerator with a magnet. It read:

Brett's heartbeat accelerated. Shayla called! He wanted to talk to her before she changed
her mind about talking to him. He eased out the door, returned to the car, slipped it into neutral, and pished it away from the cabin driveway. He didn't start the engine or turn on the headlights until he'd nosed onto the road, heading toward Shayla's house.

rett drove up to Shayla's house, cut the engine, then sat wondering how he was going to get hold of her. It was after midnight. Surely her family was asleep. He saw a candle flickering on the back porch, so he took a chance and rapped lightly on the screen.

She appeared out of the darkness, startling him. “I—urn, heard that you called.”

“I was going to ask you to come over.”

“I know it's late—”

“Maybe for you, but I've only been up for a few hours.”

Her days were his nights, he reminded himself.

“I know you work,” she said. “If tonight's not good for you—”

“Tonight's fine,” he said hastily, not wanting to miss his opportunity. She could change her mind by tomorrows “I can sleep in because my shift doesn't start until four o'clock.” He jingled the carkeys in his pocket nervously. Finally, he confessed, “Look, Shayla, I know about your having XP.”

She remained quiet for so long that he was afraid she was going to tell him to go away. Instead, she asked, “And you came anyway?”

“Why wouldn't I?”

She opened the screen door. “Follow me,” She picked up the candle and took him down a flight of stairs.

“Your room's in the basement?”

“Underground is the safest place for me, Only two tiny windows that Dad painted black.”

At the foot of the stairs, she opened a door, and he saw a huge room that glowed with lit candles and low-wattage lightbulbs. The room reminded him of an apartment, with a living area, a dining area, and kitchen. There was a
brick fireplace in one wall, and large pieces of comfortable furniture were arranged cozily to face it. Another wall was covered by a massive array of electronic equipment—a TV, VCR, DVD and CD players, stacks of CDs, and shelves of videotapes. Bookshelves crammed with books lined two other walls, and a long desk held three computers with screens aglow, a fax machine, and a small scanner. A cat jumped off the sofa and sauntered over to rub against Shayla's leg and check out Brett.