CHAPTER ONE

CHAPTER ONE

Kevin was pretty sure you shouldn’t be told you were dying when you were thirteen. There probably wasn’t a good time to be told it, to be fair, but definitely not when you were thirteen.

“Kevin,” Dr. Markham said, leaning forward in his chair, “do you understand what I’m saying to you? Do you have any questions? Do

you,

Ms. McKenzie?”

Kevin looked over to his mom, hoping she would have more of an idea what to say next than he did. Hoping that maybe he’d misheard all of it, and she would explain. She was short and slender, with the tough look of someone who had worked hard to raise her son alone in Walnut Creek, California. Kevin was already taller than she was, and once, just once, she’d said that he looked just like his father.

Right now, she looked as though she was trying to hold back tears.

“Are you sure this isn’t a mistake?” she asked. “We only came in to the doctor’s because of the things Kevin was seeing.”

The things he was seeing. That was such a gentle way to put it, as if even talking about all of it might make it worse, or bring more of it. When Kevin had first told his mother about it, she’d stared at him and then told him he should ignore it. Finally, when he fainted, he’d woken up to find that he had an appointment with the family doctor.

They’d quickly gone from the doctor’s office to the hospital for tests, and then to Dr. Markham’s office, which was white-walled and filled with mementos of what seemed like trips to every corner of the planet. When Kevin had first stepped in there, he’d felt as though it was an attempt to make a cold, clinical space seem homey. Now he thought maybe Dr. Markham liked to be reminded that there was life that didn’t include telling people they were dying.

“Hallucinations can be a factor when it comes to diseases like this,” Dr. Markham said, in a careful tone.

Hallucinations didn’t seem like the right way to put it, to Kevin. That made it sound as though they were unreal, ghostly things, but the things he saw seemed to fill the world when they came. Images of landscapes he hadn’t seen, hints of horizons.

And, of course, the numbers.

“23h 06m 29.283s, −05° 02′ 28.59,” he said. “It must mean something. It has to.”

Dr. Markham shook his head. “I’m sure it must feel that way, Kevin. I’m sure that you must want it all to mean something, but right now, I need you to understand what is happening to you.”

That had been part of why Kevin had told his mom about it in the first place. It had taken him weeks to convince her that he wasn’t joking, or playing some game. She’d been sure that he wasn’t serious at first. When he’d started to have the headaches, she’d taken it more seriously, letting him stay home from school for the day when the pain was paralyzing. When he’d collapsed the first time, she’d rushed him to the doctor.

“What is happening to me?” Kevin asked. The strange thing was how calm he felt—well, not calm. Maybe more kind of numb. Numb was probably the right word for it. His mom looked as though she was on the verge of falling apart, but for Kevin, all of it seemed far away, still waiting to rush in.

“You have one of a group of degenerative brain disorders known as leukodystrophies,” Dr. Markham said. “Here, I’ll write it down if you like.”

“But I’ve never heard of that before,” Kevin’s mom said, in the tone of someone for whom that meant it couldn’t be real. He could see the tears she was trying to fight back. “How can my son have something I’ve never even heard of?”

Seeing his mom like that was probably the hardest part of it for Kevin. She’d always been so strong. He’d never had a problem she hadn’t been able to solve. He suspected that was what she was thinking too.

“It’s a very rare illness, Ms. McKenzie,” Dr. Markham said. “Or rather, a collection of illnesses, each of which presents differently. There are different forms, each one caused by a genetic abnormality that affects the white matter, what we call the myelin sheath, of the brain. There are usually only a few hundred sufferers of each of these illnesses at any one time.”

“If you know what causes them, can’t you do something?” Kevin’s mother asked. “Isn’t there some gene therapy or something?”

Kevin had seen his mom on the Internet. Now, he guessed he knew what she’d been looking at. She hadn’t said anything, but maybe she’d been hoping she was wrong. Maybe she’d been hoping there was something she’d missed.

“There are therapies available for some forms of leukodystrophy,” Dr. Markham said. He shook his head. “And we have hope that in the future, they might help, but Kevin’s isn’t one where there is any established treatment. The sad truth is, the rarer the disease, the less research has been done on it, because the less funding there is for that research.”

“There must be something,” his mother said. “Some experimental option, some study…”

Kevin reached out to put his hand over his mother’s. It was strange that they were already almost the same size.

“It’s okay, Mom,” he said, trying to sound as if he had everything under control.

“No, it isn’t.” His mom looked as though she might burst apart with the shock of it all. “If there’s nothing, then what do we do next?”

“We use the treatments that are available to give Kevin the best quality of life we can,” Dr. Markham said. “For the time that he still has left. I’m sorry, I wish I had better news.”

Kevin watched his mother forcing herself to be brave, piecing herself back together a little at a time. He could tell that she was doing it for his sake, and almost felt guilty that she had to.

“What does that mean?” she asked. “What exactly are you proposing to do for Kevin?”

“I’m going to prescribe tablets to help manage the pain,” Dr. Markham said, “and to reduce the chances of seizures. Kevin, I know that hallucinations can be distressing, so I’d like you to talk to someone about techniques for managing them, and your responses to them.”

“You want Kevin to see a psychologist?” his mother asked.

“Linda Yalestrom is an expert in helping people, particularly young people, to cope with the symptoms that rare illnesses like this can cause,” Dr. Markham said. “I strongly recommend that you take Kevin to see her, given the things he has been seeing.”

“They’re not just hallucinations,” Kevin insisted. He was sure that they were more than that.

“I’m sure it must feel that way,” Dr. Markham said. “Dr. Yalestrom might be able to help.”

“Whatever… whatever you think is best,” Kevin’s mother said. Kevin could see that she wanted nothing other than to get out of there. There was something he needed to know, though. Something obvious that he felt he should probably ask, even if he didn’t really want to hear the answer.

“How long?” he asked. “I mean, how long until I… die?”

That was still a hard word to believe. Kevin found himself hoping it would all turn out to be a mistake, even now, but he knew that it wasn’t. It couldn’t be.

“It’s impossible to say for certain,” Dr. Markham said. “The rate of progression for leukodystrophies can vary, while each case is different.”

“How long?” Kevin repeated.

“Perhaps six months.” Dr. Markham spread his hands. “I’m sorry, Kevin. I can’t be more exact than that.”

---

Kevin and his mother went home, his mom driving with the kind of care that came when someone knew they would probably fall apart if they didn’t concentrate completely. For most of the journey out toward the suburbs, they were silent. Kevin wasn’t sure what he could say.

His mother spoke first. “We’ll find something,” she said. “We’ll find another doctor, get a second opinion. We’ll try whatever treatment they can think of.”

“You can’t afford that,” Kevin said. His mother worked hard at her job at a marketing agency, but their house was a small one, and Kevin knew there wasn’t a lot of money for extra things. He tried not to ask for much, because it only made his mother feel sad when she couldn’t give it to him. He hated seeing his mother like that, which only made this harder.

“Do you think any of it matters to me?” his mother demanded. Kevin could see the tears pouring from her eyes now. “You’re my son, and you’re dying, and… I can’t… I can’t save you.”

“You don’t have to save me,” Kevin said, although he wished that someone would right then. He wished that someone would come along and just make all this stop.

It was starting to seep in what this might mean. What it

would

mean, in less time than the end of the school year. He would be dead. Gone. Anything he’d looked forward to would be cut short, anything he hoped for the future would be stopped by the fact that there would

be

no future.

Kevin wasn’t sure how he felt about that. Sad, yes, because it was the kind of news you were supposed to feel sad about, and because he didn’t want to die. Angry, because what he wanted didn’t appear to matter when it came to this. Confused, because he wasn’t sure why it should be him, when there were billions of other people in the world.

Compared to his mother, though, he was calm. She was shaking as she drove, and Kevin was so worried they might crash that he sighed with relief when they pulled onto the street where their house stood. It was one of the smallest houses on the block, old and patched with repairs.

“It will be all right,” his mother said. She didn’t sound as though she believed it. She took hold of Kevin’s arm as they made their way into the house, but it felt more like Kevin was supporting her.

“It will be,” Kevin replied, because he suspected that his mother needed to hear it even more than he did. It might have helped if it were true.

They went inside, and it felt almost wrong to do anything after that, as though doing normal things would have been a kind of betrayal, after the news Dr. Markham had given them. Kevin put a frozen pizza in the oven, while in the background, he could hear his mother sobbing on the sofa. He started to go to comfort her, but two things stopped him. The first was the thought that his mother probably wouldn’t want him to. She had always been the strong one, the one looking after him even after his father left when he was just a baby.

The second was the vision.

He saw a landscape beneath a sky that seemed more purple than blue, the trees beneath oddly shaped, with fronds that reminded Kevin of the palm trees on the beaches, but trunks that twisted in ways palm trees never did. The sky looked as though the sun was setting, but the sun looked wrong somehow. Kevin couldn’t work out how, because he hadn’t spent time looking at the sun, but he knew it wasn’t the same.

In one corner of his mind, numbers pulsed, over and over.

He was walking across a space covered with reddish sand now, and could feel his toes sinking into it. There were creatures there, small and lizard-like, that scuttled away when he came too close to them. He looked around…

…and the world dissolved into flames.

Kevin woke up on the kitchen floor, the oven’s timer beeping to tell him the pizza was ready, the smell of burning food dragging him off the floor and over to the oven before his mother had to do it. He didn’t want her to see him like this, didn’t want to give her even more reasons to worry.

He took the pizza out, cut it into slices, and took them into the living room. His mother was on the couch, and although she’d stopped crying, her eyes were red. Kevin put the pizza down on the coffee table, sitting beside her and switching on the TV so they could at least

pretend

that things were normal.

“You shouldn’t have to do this,” his mother said, and Kevin didn’t know if she meant the pizza or everything else. Right then, it didn’t matter.

Still the numbers hung in his head: 23h 06m 29.283s, −05° 02′ 28.59.