Preface

June 24th, 1995

The Tilt -A-Whirl spun and dipped with ever greater ferocity as the accompanying calliope played on. To Cindy Dawson, safe in her stroller, sticky residue of a candy apple on her face, the groans of the gears and motor driving the ride played harmony with the laughter and screams of the riders. She sensed the exhilaration of the people taking their turn on the machine and she bounced her legs to the beat only she truly heard. Her mother stood above and smiled at her daughter as she took another step forward in the funnel cake line. The ride was winding down it’s cycle and the music that Cindy heard ebbed with it until a deafening silence filled the air just under the great ruckus being made at the carnival. It was silence that only Cindy noticed as she licked her red candy stained fingers. Other songs were playing in the carnival from other rides and when she listened she could hear even fainter melodies coming from the people themselves - even from the ragged grass of what was once a field, now a setting for the fund raising carnival, by the First Baptist Church of Quarryton, Pennsylvania. Though none of the other songs she heard seemed as sweet as the Tilt-A-Whirl.

Cindy’s mother, Carol, finally had made her way to the front of the line and had ordered her funnel cake. Grease filled the air around the food cart, and sweat was pouring down the brow of the pimple-faced boy making the funnel cakes. Pop - sizzle - the sounds of the batter cooking added to the music that Cindy heard. The sweet swell of the funnel cakes drew her attention in now that the Tilt-A-Whirl song was taking a break. She ignored the rest of the sounds of the carnival while she looked up at her mother wondering what sugary goodness would be presented to her next now that only remnant of her candy apple lay sticking to her face and the ragged stick she had tossed to the ground. A moment longer and her mother would hand the money over to the wrinkly woman with a face like a potato on the other side of the cart’s counter and Cindy and Carol Dawson would share in the sweet. It was while she waited that the Tilt-A-Whirl song began winding up, and it was also when she noticed what she would remember only as the “dance boy”.

He stood in line just behind her with his own father. While Cindy was only three she noticed the difference between the Wal-Mart clothes she and her mother wore, and the clothes the boy and his father wore. She didn’t know it, but the boy’s father was a lawyer and while the man had grown up on this side of Quarryton, he hadn’t been back in years. The boy looked out of place. A little lost too, and his eyes occasionally darted from side to side as if to ask if what he was seeing was something safe and appropriate for a boy to look at. This was indeed his first time at a carnival, and his father had brought him here for a reason. He had sheltered his son from his past, but had decided it was a good time - an urgent time in fact - for them to both come to Quarryton. The man had realized his time in the town - growing up and eventually leaving the blue collar railroad town - hadn’t been all bad. The boys mother would have “thrown a gasket” as the man would have called it if she knew where her son - her soon-to-be-invalid son - was at. The boy would occasionally let out a rasping sound as he breathed. No one noticed it. Not even his father with all the carnival noise that filled the air. No one that is except Cindy.

Her tongue was still searching as far as it could reach on her cheeks for any lingering vestige of candy apple, but she had done as well as a girl of three could do with licking her face and hands clean thus leaving little behind. She had heard the rasping of the boy’s breathing, and now she could see he was only a little older than her. As yet the boy hadn’t noticed her, but as he stood there holding his father’s hand Cindy had noticed a silence coming from him. She would have told her mother that he was quiet even if he had been banging a drum to which her mother would have corrected.. Cindy could hear the silence, and while she had no words for things like cells or peptides or genes or long chain fatty acids the lack of a particular sound that was issuing from all the living things around her was at first irritating - then louder, almost like the sound of nails on a blackboard.

Carol, carful not to lean against the powdered sugar coated counter, fished through her purse for the five dollar bill she knew she had gotten as change from the kiddie ride ticket booth. She felt the tug at her skirt, but her attention was still toward the bottom of her purse - a lipstick, tissues, a scratched losing lottery ticket, a wrapped tampon - ah, there it was - the fiver.

“Mommy,” Cindy said as she tugged at the skirt.

“Mommy,” she said louder this time, but her mother was still rummaging in her purse.

Carol paid the woman who seemed perturbed to have to be at the carnival sweating and making the funnel cakes. She then turned to her daughter who was still tugging at her skirt.

“C’mon sweetie. Don’t get that candy apple all over me.”

Cindy stopped, checked her fingers once more, and smiled a grin with reddish stained lips and teeth while wiggling her fingers.

“All clean, Mommy.”

“Yeah, that’s why half my clothes have little greasy finger prints all over them.”

Billy Lancerman, the boy who had caught Cindy’s attention, had noticed the stroller and the mother ahead of him. He hadn’t been feeling well all morning, but hadn’t had the heart to tell his father so. He didn’t like the smells issuing from the cart ahead of him, but his father had sworn he’d love the confection - perhaps too strong of a word for charred batter coming from the overused oil. He waited as patiently as he could holding his father’s hand because he knew it was important to him. Billy hadn’t really understood the words the doctors had said to his parents a week ago when they’d seen them in New York. Strange words like adrenoleukodystrophy and myelin had been thrown around by the Neurologist he’d seen. Though Billy was eight, and smart for his age, he hadn’t really understood why his mother had broken down in tears when the doctor began speaking in thick accented whispers. All Billy knew was that he’d been feeling awful, and falling down for no reason from time to time to the point that his parents had noticed it wasn’t simple clumsiness causing it. A whiff of burning meat coming from the hot sausage stand wafted into Billy’s nose, and being raised vegan - no animal derived foods at all - he immediately became sick to his stomach. This was why he hadn’t noticed Cindy point at him while pulling on her mother’s skirt.

“Why don’t they dance Mommy? Why don’t they dance?”

Carol had just gotten her change and the funnel cake was soon behind.

“Just a minute honey. Mommy has to get our goodie then we’ll get more sugared up.”

“But Mommy,” Cindy said though she knew by the look on her mother’s face she wasn’t really being paid attention to. She’d have to find the answer to her question herself.

Cindy had been listening to the boy, and even below his wheezing breath she had heard the silence. She had heard something like it before when Nemo their goldfish had died. Everything about the usually placid goldfish had been noisy to Cindy - more music - and it had all stopped the day she found him floating upside down. But this boy, he was noisy, but there was silence too. She strained to hear the silence, and it was different. It wasn’t until she though about her cartoons, especially the musical ones from Disney, that she realized that it wasn’t silence she heard coming from. It was something more. There was music in him, but a part of him, a very tiny part, just didn’t respond to it. That part wasn’t dancing. She knew nothing of the white lipid sheaths of myelin coating his neuron that were slowing being eroded thus causing them to stop conducting impulses. She just knew that a very tiny part of his cells wasn’t dancing to the music that was in his body. It was a music that lay in the borders and bonds of the molecules themselves. It was emanating even from parts smaller than the smallest and in the energies that made up the quarks in his atoms. It effected how Billy’s body dealt with long chain saturated fats - the kind which filled the greasy funnel cakes Billy’s Dad was about to give his son because it would be the last treat like this his boy would ever have. Billy wasn’t like Cindy’s fish Nemo, and she knew that. Nemo had been silent - not completely because decomposition was still taking place in its scaly little frame. This boy wasn’t like that. His cells just didn’t always dance.

She strained a bit to turn in her stroller to better see the boy behind them. So far she had only been watching him with her mind, but now she wanted to see him with her eyes. Her mother would soon push her away from the line and take her to eat the funnel cake so she knew this might be her only chance. Something was gnawing at her - compelling her to see the boy and really listen to him. Once she did she knew she’d understand the dance his cells were missing out on. Then she saw him. His eyes were dark and shy and bit more sunken than she’d expected as she craned around in her stroller straining against the seat belt.


March 5th, 2007
OK - here’s the rest of the preface. I originally posted the story of Cindy and Billy at the carnival as Chapter 1, but I now realize it is really the preface to the story and occurs 13 years prior to the beginning of Chapter 1. Also, I changed Billy’s last name to Lancerman - why, well Linderman is a character on Heroes and I just relaized why the name was in my mind. So Billy and his father get a new name which should work out better anyway. the next post is the rest of that preface.

Patrick


His pale left hand hung at his side while Billy held his father’s hand with his right. His arms were still plump like any other child’s. This would soon change as the disease took hold. Cindy could see the faint imprint of his veins just below the skin of the back of his free and in though her eyes couldn’t see the regular thump of his heart pushing the blood through them or hear it with her ears, a part of Cindy, the part that knew about dancing cells, could hear the music of the blood. She didn’t know what cells were, but she decided they were like little bugs. And she could tell that some of the bugs just didn’t dance. She was sure they wanted to. They just didn’t know how, just like how some of the kids at her preschool hung back at the edge of the room when the teacher played games like musical chairs. Cindy, however, always played and she especially always danced.

The more she listened the more she felt the urgency of it and for some reason she really wanted them to dance. It was the same sort of urgency she started to pay attention to now that she was potty trained, and in fact if Cindy had been out of her stroller she might even had started bouncing with her legs crossed. Instead she strained a bit more against the seatbelt of the stroller trying all the while to reach backwards to touch the boy. She wasn’t really sure why she had the urge to touch him. Maybe she’d poke him in the ribs and tickle him until it tickled the little bugs that were in him and made them dance. That would be funny indeed.

Billy finally noticed the little girl in front of him turning around and reaching for him. Some kids need to mind their own business, he thought. He was feeling all the strangeness of the carnival around him now more acutely, and the greasy smell from the funnel cakes was adding to the hot sausage smell making him even more sick to his stomach. The little, grunting as she twisted in her stroller, wasn’t helping him feel better at all.

“Mommy,” Cindy said as she saw the boy draw away from her closer to his father. “Make the bugs dance. I want them to dance.”

“Honey, c’mon just be patient. We’re almost through this now.”

Carol was turning back to the counter when she noticed the boy huddling next to his father. He had a sweet but sad expression in his eyes, and even Carol noticed they were a little too sunken for a healthy child.

“Sorry, hon,” She said to Billy as she moved Cindy’s stroller a few inches further in the line. “She gets a bit too enthusiastic sometimes.”

Billy’s father, Norman Lancerman, had finally noticed the little girl making a ruckus in front of him and he smiled back at her mother. The carnival atmosphere had absorbed him and taken him back to his own childhood in Quarryton. In fact, though his wife knew he’d grown up in Western Pennsylvania, she’d always assumed he’d meant Pittsburgh and not the little depressed and soot stained town of Quarryton just a few . Norman had never brought her or Billy here, and in fact hadn’t been back since he’d graduated from Penn State fifteen years prior. It had taken him that long to really come to some sense of peace about growing up the youngest of ten in a welfare family from poor side of the tracks, literally in this railroad town, in Quarryton’s bleakest neighborhood known to the residents as Coaltown. Norman Lancerman had gotten free of it and had made himself a success in his own mind. But now he was back again, and trying to remember all the good times that had existed in the neighborhood of his upbringing. And he wanted to give a bit of it to his son too, though he really hadn’t know exactly why. The impulse to stop in Quarryton on the way back from a Pittsburgh Neurologist appointment had come on him like a song that gets stuck in your head. Slow at first and then nagging until you either sing the song or blast the radio to drown it out. Norman had decided to sing the song and stopped. He’d had no idea the carnival had been going on, but now he was glad he’d done so.

“It’s alright,” Norman said. “Billy’s just a little shy.”

Carol smiled back and turned to receive the funnel cake that was now steaming in the counter coated in powdered sugar.

Cindy, of course had been listening to it all. So Billy was his name. Her mother had moved her a bit further away and now that the funnel cake was done they would move away from the line and the boy would be gone. She really wanted him to dance now. The idea hit her that she could make him if she wanted to. Not by poking him in the ribs and tickling him, though that would be fun too, but she could just show his bugs how if . . .

she
could
just
touch his hand.

Carol turned the stroller roughly on the bumpy ground with her free hand while she juggled her purse and the funnel cake in the other. Cindy was now facing the boy and they looked into each other’s eyes. Billy had this impulse to reach out and touch the girl’s hand as she reached for him. He almost did it, but being in this strange place with all the strange sounds and smells around him he did something that sealed his fate. It was a little thing really that wouldn’t even be noticeable. All he did was flinch. Just a little.

Cindy reached for him as her mother pushed her stroller back through the line toward the tent where the picnic tables were. The ends of her fingers ached with a static electricity that was building there - tingly like how her hair got sometimes when her mother brushed it. She could make Billy’s cells dance. She was sure of it. If she could on touch him they’d dance alright, and her fingers almost touched his arm when he flinched. She was only a millimeter away, but it was enough. It was only a millimeter that would have saved Billy Lancerman’s life. Sometimes fate is like that. Sometimes our little bugs just don’t get to dance.

As Cindy and Carol ate their funnel cake, Norman Lancerman was in the bathroom watching his son vomit and deeply regretting bringing him here. He deeply regretted any of the warm feelings he had let surface, and an overwhelming felling of stupidity came over him. The greasy smell and the whining little girl had finally gotten the best of Billy’s stomach, and Norman was in fact regretting all of Quarryton, especially Coaltown and its people again. Cindy, newly sugared up, was still being nagged by that silence she had heard from the boy and his little bugs that wouldn’t dance. It was ruining her funnel cake experience, her first funnel cake, so much that she closed off that part of her mind that could hear it. It was easy enough now that she wasn’t really trying very hard to do it with most of her attention on the gooey pastry in her mouth. She made up her mind right then and there that she never wanted to hear the little bugs not dancing in the boy or anybody else for that matter. She would really do her best not to hear it ever again.