His mother rapidly tapped the steering wheel with a fingernail, her eyes staring at the road ahead. She was silent, but Tom could practically hear the gears turning in her head as she tried to come up with all the reasons why this wasn’t going to work.
“Do you really think that would be smart?” she finally asked, taking her attention away from the road to gaze at him.
It was exactly as he had expected, and he felt himself growing angry. His parents never wanted to hear how he felt about his situation, and normally he would have let them have their way, but not this time. Tom was sure that this time, his condition was changing. It had to be; it’d been thirteen days.
Mom removed her right hand from the steering wheel and reached over to gently massage his shoulder. “I think it’s great that you’re feeling better and that you haven’t had an attack in a while, but I’m afraid you’re getting your hopes up for nothing. This isn’t a condition that just goes away. Once you have it, you have it for the rest of your life, and that’s just something we’re all going to have to learn to live with.”
Tom leaned toward his door so that his mother’s comforting hand would fall away. “It’s different this time,” he responded.
She sighed, returning her hand to the wheel. Tom noticed that her knuckles had gone white, she was gripping it so tightly. “I hate to be a doomsayer, but you’ve gone two weeks without an attack before—and then had one. What makes you think this time is any different?”
Tom looked out the window at the cars zipping past him in the right-hand lane. “I stopped taking my medication,” he said in a voice far softer than he had intended. If she didn’t blow up at this, he figured he was doing all right.
“You what!” his mother yelled, and the car swerved slightly to the left as if she had momentarily lost control.
So much for me doing all right, Tom thought.
“Tell me you’re joking,” she demanded. Her cheeks were flushed red, and she had the wild look in her eyes that she got when she was about to lose it. It was the same look she’d gotten a few months back when he had ridden his bike to Butler, the decommissioned air force base about twenty miles from his house.
“Do you realize how dangerous that is?” she yelled. “How could you do something so stupid without telling your father and me?”
“I’m fine,” he yelled back. “I haven’t taken any medicine in over a week and I feel fine. Shouldn’t that tell you something?”
They were coming up on their exit and he was getting ready to point it out, but it wasn’t necessary. His mother threw on her blinker and swerved into the right lane, cutting off a delivery truck.
“It tells me that you’re not thinking,” she said, clicking on the blinker again for the exit. “It tells me that you’re so desperate not to have your condition that you’d be willing to believe just about anything.”
She took the exit a little too sharply, the car’s tires screeching shrilly as he was pushed against the door by the momentum of the turn.
“That’s not true,” he shot back. “I gave it a lot of thought before I did it. If I’d had an attack, I would have started taking the medicine again, but I haven’t.” He scowled at her from his seat. “I’m not stupid, you know.”
“I’m so angry at you right now I’m not so sure,” his mother said through gritted teeth, obviously trying to remain calm.
“You’re just being overprotective,” Tom said defensively. “I’m fine—I really am.”
She turned right onto York Street
and then left into the Monarch Plaza parking lot, where Dr. Powell had his office.
“We’ll see what the doctor says about that,” she said, pulling into a space and throwing the car into park. She threw her car keys into her bag, opened the door, and slammed it shut behind her.
Tom leaned his head back against the seat and sighed. All things considered, it had gone better than he expected.
Chapter 2
Narcolepsy is a potentially disabling, lifelong neurological condition estimated to afflict about one in every two thousand people in the United States. The disorder is best characterized as an inability of the nervous system to maintain the boundaries between wakefulness and sleep. During usual waking hours, people experience periods when sleep involuntarily encroaches into wakefulness. Those stricken with the quite rare and severely incapacitating version of the sleep disorder, Quentin’s narcolepsy, can experience periods of perpetual sleep that in some cases have lasted anywhere from a single day to five days.
Dr. Bernard Quentin from the article “A New Narcolepsy” Published by the International Research Foundation for Sleep Disorders (IRFSD), 1982
“Deep breath,” Dr. Powell ordered, and Tom did as he was told. The stethoscope was cold against his bare chest, as it always seemed to be.
Powell was short, with a beard, a little on the heavy side, and his breath always smelled like peppermint. Tom liked him; he seemed to be a good guy, not a stiff like some of the other doctors he had seen over the years. Dr. Powell had been Tom’s physician since his father’s most recent assignment had brought the family to Hawthorne a year ago. Dad’s job as a mathematical troubleshooter for high-technology firms forced them to relocate a lot; Dr. Powell was the fourth specialist Tom had seen since he was eight years old and first diagnosed with Quentin’s narcolepsy.
“Good,” the doctor said. He stepped away from the exam table, placing the stethoscope around his neck. “You can put your shirt back on,” he said over his shoulder as he grabbed a manila file folder. He plucked a pen from his white lab coat pocket and began to jot down a few notes.
“So,” Powell said, still writing. “Anything you’d like to tell me about? Anything you think I should know?”
Tom’s mother had gotten to Powell first, having a little closed-door one-on-one with the doctor before Tom was called in for his examination. He’d known it was only a matter of time before the doctor brought it up.
Tom shrugged, his feet dangling off exam table where he still sat. “I stopped taking my meds,” he said quietly.
Dr. Powell looked up. “You stopped taking your meds?” he repeated sharply, then began to leaf through the medical file. “I don’t see anywhere in my notes here that I told you to do that.” The doctor closed the folder and fixed the Tom with a stare so intense he could practically feel it. “Help me out here, Tom. When did I tell you to do this?”
Tom studied a hangnail on his thumb, but he could still feel the man’s eyes boring into him. “You didn’t,” he mumbled, glancing up nervously.
“I didn’t,” Dr. Powell echoed with a slow nod. He set the file down on the countertop and placed his pen back inside his coat pocket. “That’s a relief,” he said, pretending to wipe beads of sweat from his brow. “Because I sure as hell don’t remember encouraging you to do anything that stupid.”
Tom laughed nervously. “I’m sorry. It’s just that I was feeling better, so I decided to experiment. Where’s the harm in—?”
“Where’s the harm?” Powell interrupted. “Tom, Quentin’s narcolepsy is a disorder that we still know very little about. The medications we put you on are to help you manage the disorder so that you can lead as normal a life as possible. When you stop taking them, your blood levels—”
“Normal life?” It was Tom’s turn to interrupt, his voice rising an octave. “I don’t lead a normal life.” He felt the anger growing again. Sure, it could have been worse: he could have been in a wheelchair or have some kind of cancer, but it was still bad. He felt like he was living in a bubble, looking out at a much bigger world. He took a deep breath.
“I feel fine,” he said more calmly. “I haven’t had an attack in thirteen days and I’ve been without medications for a week.”
Powell approached the examination table and put a supportive hand on his shoulder. “You feel fine now, but what about next week or a month from now when the spells hit you again?” he asked quietly. “Quentin’s narcolepsy does not go away, Tom. It’s no
t something you outgrow. It’s a genetic disorder.”
“But you yourself said that there’s lots still unknown about the disease,” Tom argued. “Maybe there’s a chance that the symptoms do decrease with age.”
Dr. Powell gently squeezed the tensed muscles in his shoulder. “We have enough information about normal narcolepsy to know that it’s a lifelong ailment that requires medications and lifestyle modifications to control its symptoms.”
“But I feel fine,” Tom whispered, hanging his head low.
“And I think it’s wonderful that you’re feeling so good,” Dr. Powell said, picking up the file again. “But I’m sorry, Tom, that doesn’t mean you’re free of the sickness. In fact, I’d be even more vigilant with medicines and routines now that you’re starting to see this level of success so you don’t throw off the stability you’ve worked so hard to achieve.”
Powell walked to the examination room door and rested his hand on the knob. “Your mother’s very concerned, you know.”
Tom laughed sarcastically. “When isn’t she?”
“Your parents just want what’s best for you,” the doctor replied. “I’m sure they can be a little overprotective, but it’s only because they care.” He motioned with the manila folder for Tom to follow. “Come on into my office and we can talk this through with your mom.”
Tom slid off the table and followed Dr. Powell into his office, where Victoria Lovett was waiting for them. She had been on the phone and was quickly putting the cell back into her purse. Probably on the phone with Dad, he thought. Busted.
She still didn’t look happy.
“Well?” she asked from her seat in front of Dr. Powell’s desk. “Is he all right?”
Powell sat down at his desk. “He’s fine as far as I can see,” he answered, arranging some paperwork in front of him. “I’d like to take some blood before he leaves, just to be sure.”
Tom sat down in the empty chair next to his mother, doing everything he could not to make eye contact with her.
“I can’t believe he did this,” she continued. “After we worked so hard to cut down on the attacks, this is what he does.”
“I’m sorry,” Tom said again, his anger returning. “I get it; you’re upset. I’ll start taking the medication again when I get home, so just calm down.”
“Calm down?” his mother yelled, shifting in her seat so she could address him directly. “Don’t you think I have reason to be upset?” she asked. “My only child has stopped taking the medicine that keeps him from falling asleep for days at a time and he doesn’t understand why I’m upset?”
He hadn’t thought that it would be this big a deal. Part of him had hoped that his mother would be psyched that he was feeling so much better. The thing was, the more he thought about it, as much as it burned him to admit it, he was starting to see her point. He didn’t say anything, staring at the office floor, at the swirling red pattern in the rug beneath his feet. Tom didn’t want to be there anymore; he wanted to go home—to his bubble.
“We could change some of his medications, maybe up the antidepressant a bit, but I’d like to look at his blood work first,” Dr. Powell interjected.
Images of pills danced in Tom’s head: tiny white pills, black-and-orange time-released caplets, ones that resembled Skittles candies. Dexedrine, Provigil, Tofranil, Norpramin, Anafranil, Cylert.
From far away, he heard his mother and Dr. Powell discuss his medicine, and then the doctor picked up the phone and dialed the lab. He listened to Dr. Powell speak. It was as if the doc were speaking from inside a public restroom. Something was wrong.
Not this, Tom thought, please, not now. He started to stand.
“We can’t go until Dr. Powell takes some blood,” his mother was explaining. “Tom, are you all right?” she asked, and though she sounded far away, Tom could detect the concern in her voice.
“Gotta go,” he managed, sounding like he was speaking in slow motion. His limbs felt heavy, as if they had been filled with lead.
“Tom?” he barely heard Dr. Powell say, and there was a commotion and a brief flash of pain and he realized that he had fallen to the floor.
They were right. The world turned black and began to close in all around him. He wasn’t better. It had been waiting for him all along. Patiently waiting until he let his guard down, letting him think that he might have a chance.
What a jerk he’d been.
He would never be normal.
Never.
After eight years with Quentin’s narcolepsy, Tom should have been used to the attacks. Oh, well, here comes another one, better aim for something soft.
But that wasn’t the case.
They came on him with very little warning. Sometimes he would find himself suddenly emotional, very excited about nothing in particular or really pissed off. That was usually a good indicator, but by the time he realized it, it was often way too late. The loss of muscle control was next. Medically it was called a cataleptic attack. He would get very weak, his arms and legs feeling like they were made out of rubber—or like they suddenly weighed a thousand pounds each. Yeah, this was the fun stuff, the warm-up to a full-on narcoleptic episode. And as if things weren’t exciting enough, there were the hallucinations. He’d been having more of those lately, but not this time.
He could think of nothing worse than what he was experiencing on the floor of his doctor’s office, that feeling of helplessness as the darkness opened wide to swallow him. Tom could hear his mother’s voice, far, far away, telling him that he was fine, encouraging him to ride it out, and he knew that she was right. But there was still that nagging question in the back of his mind: What if this is it? What if he was dragged so deep into the darkness that he never woke up?
It could happen. There was so much they didn’t understand about the illness.
He’d been out for five full days once. Five days.
Want to make it six? Tom imagined the darkness asking as it pulled him deeper. Come on down, we have plenty of room. Stay as long as you like.
His body reacted, thrashing wildly, the side of his face bouncing off the carpeted floor, followed by a sudden surge of adrenaline that allowed him to escape the clutches of sleep, but only for a brief instant before he was lost again. It was too strong. No matter how hard he fought, the spell would beat him; it was a horrible lesson that he had learned over the years and one that he would have to accept all over again now that he knew the affliction had not left him.
The worst part of an attack was when the darkness of sleep took him whole. It dragged him so deep that all sense of self disappeared, and at that moment he didn’t seem to exist anymore.
Tom imagined that it was an awful lot like dying.
Chapter 3
Madison shuffled into the kitchen, her slippers sliding on the tile floor as she crossed to the cabinet to get herself a cup for her morning coffee. She poured herself a full mug and then splashed some milk in, watching the color change from nearly black to a light brown before taking a sip.
She made her way to the island in the center of the kitchen and grabbed a banana from the fruit bowl. DJs jabbered softly from a radio, but Madison wasn’t hearing them. Already she found herself lost inside her head, thinking about her parents.
If only they had told me sooner, she thought, taking another swig of coffee.
“I have to get a life,” Madison muttered.
She finished her banana and pushed her stool away from the island, bringing the peel to the trash. She caught a snippet of a Rolling Stones song playing on the radio. Her dad loved Mick Jagger, and she had to laugh, remembering the really horrible imitation he did whenever a Stones song came on back home.
A wave of sadness washed over her, and Madison found herself reaching for the cordless phone attached to the wall, checking the time showing on the microwave as she dialed a number she knew by heart. He should be in his office now, she thought, pacing in a circle, listening to the sound of the phone’s ring.
“Ste
ven Fitzgerald, how can I help you?” answered a voice.
Madison smiled. “Hey, Dad,” she said. “It’s me.”
“Hey, me, how’s it going?”
She went back to her stool and sat down. “Okay,” she said. “Aunt Ellen and Uncle Marty haven’t thrown me out yet, so it can’t be going too badly.”
Her father laughed, and she wondered how often he actually did that these days. “Hold on for a second, would ya, hon?” he asked, and the sound on the other end of the phone muffled as he placed his hand over the mouthpiece and began to talk with someone. Her father worked at the registrar’s office at the University of Chicago.
“Sorry about that, kiddo,” her dad said, coming back to her.
“That’s all right. You busy?”
“No more than usual,” he replied. “What’ve you been up to? Pahking your cah in Havahd Yahd?” he asked in a horrible attempt at a New England accent.
Madison started to giggle. It was cool to hear him joking for the first time in … a while.
“People do not talk like that around here,” she said with a laugh.
“Yeah, right,” he said in mock disgust. “Next time I see you, I won’t be able to understand a word you’re saying.”
They shared another laugh and as it died down, Madison ventured, “Talk to Mom lately?”
There was quiet on the other end of the phone.
“Dad?” she prodded. “Have you talked to …?”
“I heard you the first time,” her father answered. There was no longer any hint of humor in his voice. “No. No, I haven’t. Your mother and I… Your mother and I don’t… Well, it’s not that we don’t, we just can’t talk nicely to each other anymore.”
Madison felt a tightness come into her throat. “What do you mean you can’t talk to each other? Of course you can talk to each other. You just pick up the phone and call the house.”
Her father sighed heavily into the receiver. “Madison, please,” he begged her. “Your mother and I are going through some pretty rough stuff right now, and it’s just hard to be civil with each other.”
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