Julie's Butterfly

by Greta Milán

  It seemed like a sign from above when he saw a young woman who looked much like Julie turn onto his street. He leaned forward to study her. The closer she came, the stronger his physical reaction. When she stopped outside the garden gate of his building and studied the mailboxes, he was sure it was her. His excitement mounted as she lifted the flap of his mailbox and peered inside. Confronted by a heap of junk mail, Julie let the flap fall and looked up at the building. From his top-floor apartment, he couldn’t quite make out her expression, but something or someone by the main entrance attracted her attention and she hurried toward it. With his nose pressed against the window, he watched her disappear from his field of view.

  It looked like she’d gone inside.

  Bastian hurried across his apartment and listened at the front door. Light footsteps were approaching. Then everything was quiet.

  All he could hear was his heart thumping as he waited for her to ring the bell.

  But she didn’t.

  And she wasn’t going to, which was hardly surprising given the way he’d treated her.

  Thrown into a panic by this realization, he flung open the door.

  Julie was crouched outside. She blinked in surprise as she looked up and stood hastily.

  “Excuse me,” she stammered. “I—” She blushed. “Oh, God. You must think I’m nuts, but I didn’t want to disturb—” She stopped and took a deep breath. “Isabelle got your address for me from Elena. Perhaps I should have rung the bell, but then I thought you wouldn’t want me to. I just wanted to return these.” She held up his black leather gloves. “You dropped them last night, and I thought you’d want them back,” she explained awkwardly. “I was going to leave them outside your door.”

  Her eyes fell to his hands, which were covered by another pair of gloves.

  “You’ve got a spare pair,” she observed, then laughed self-consciously. “Of course. How silly of me.”

  Bastian took his gloves from her.

  Say something to her, you idiot, he thought, but his power of speech had somehow vanished.

  Julie drew her dark-green cardigan more tightly around herself and folded her arms. Her brown eyes looked wistfully up at him. “I’d better go now,” she said softly and took a step back. “Bye.”

  “Coffee?” he blurted out. Wow, he could actually talk! He gave an agonized groan in his mind as Julie regarded him uncertainly. “At least, I would offer you some if I had any,” he continued casually. “But I do have hot chocolate. Or tea. Or soda. Or perhaps you’d prefer water?”

  “Is that meant to be a joke?” said Julie after a brief pause.

  He was already asking himself the same thing. Could this get any more embarrassing? He forced a smile. “I do have a sense of humor, but in this case, I’m serious.”

  Julie stared at him wordlessly, and Bastian’s smile faded to a stricken expression.

  “Listen, I’m sorry about what happened yesterday. I shouldn’t have just run off like that. It was all just a bit too much for me.”

  “No.” Julie shook her head. “I’m sorry. I shouldn’t have put you in that position.”

  Bastian’s eyes widened in wonder. He’d behaved like a complete ass, and she was apologizing? She would only do that if she considered him some kind of victim. He swallowed hard. “Would you like to come in? You must have one or two questions.”

  “I can’t,” she replied regretfully. “I’ve got a date with Luke.”

  “Understood,” he muttered. It shouldn’t come as a surprise that she was meeting someone else, however much he hated the idea.

  “I’ve told you about him.” Julie grinned as if pleased by his reaction. “He’s the one who used up all the astronaut bandages.”

  Of course. Her nephew.

  “We’re going to the zoo,” Julie continued with a cheerful gleam in her eyes. “You could come with us if you like.”

  Once more, she was having that incredible effect on him, without even being aware of it. He felt an idiotic grin form on his lips and could do absolutely nothing about it.

  “The lion is the second largest of the big cats, after the tiger. Its main habitat is in Africa. It prefers the extensive grasslands of the sub-Saharan regions. When hunting, it can reach speeds of up to fifty miles per hour, which is relatively slow compared with other big cats. Its prey consists primarily of antelope and wildebeest, as well as buffalo, zebra, and, when necessary, elephant.” Julie looked up from the small brass plaque and searched around for a lion.

  “Cool.” Like all boys his age, Luke drawled out a long o whenever he was particularly enthusiastic about something. Julie’s nephew was incredibly bright for his six years. The wind had tousled his short brown hair, and his brown eyes—which bore a striking resemblance to Julie’s—shone with delight. He stood on tiptoe next to his aunt so that he could see better over the railing around the big cats’ outdoor enclosure.

  Bastian went to stand beside them.

  On a plateau lined with dense bushes, a regal pair of fully grown lions lazed luxuriously in the spring sunshine. This was clearly the alpha male of the pride with his companion.

  “Look!” Luke pointed to a lion who appeared out of the bushes, stalking the pair. He must have been younger, as his mane was nowhere near as majestic as the alpha male’s. As the pair noticed him, they jerked to their feet, prepared to defend their territory, and the two males sized each other up, snarling. The tension was palpable.

  The female took cover beside her companion. The older lion growled out a further warning, but the young lion, undeterred by his rival’s imposing presence, leapt at him in a single bound.

  Luke gasped. The big cats’ growling and snarling was punctuated by Luke’s cries of encouragement. The victor soon became clear. Despite his boldness, the young lion failed to overcome the pride’s leader. It only took two final, well-aimed blows to force the weakened challenger to retreat.

  Luke’s shoulders sagged in disappointment at the abrupt outcome of the skirmish. “I was rooting for the other one.”

  “He looks like he needs to fatten himself up a bit before he can hold his own against the big one.” Bastian sounded chummy and familiar. They had quickly become friends—it had only taken a second for them to decide they liked each other.

  “At least the big guy took his share of the beating.” Luke grinned at Bastian, revealing a gap in his teeth. “But why were they fighting?”

  “For food, perhaps,” suggested Bastian.

  Luke looked around the plateau for evidence of that. “No, there’s no food there.”

  The pair had settled back down and were once again lazing together in the sunshine.

  Julie laid a hand on his shoulder. “They were quarrelling over the girl,” she explained.

  Luke looked disappointed. “So Big Guy let himself get drawn into a scrap over a girl?”

  Bastian suddenly became aware of a certain similarity to his own situation. Not long ago, he’d jumped in on Julie’s behalf, not without getting himself hurt in the process.

  Julie also seemed to be aware of the parallel. “He didn’t go looking for trouble,” she said uncertainly.

  The corners of Bastian’s mouth twitched at her guilty expression. “Maybe not, but it had to be done.”

  Luke glanced back at the pair of lions. “He must like her.”

  Bastian’s eyes fell on Julie. It would be so easy to confirm Luke’s observation, but the implications of that would be so much greater than the little boy realized.

  Blissfully unaware of the tension between his two companions, Luke was eager to move on. “Let’s go.”

  “What do you want to see now? The elephants? Or the monkey house?” asked Julie.

  “I’d like an ice cream, please,” he said, looking at her so imploringly that she had no choice but to head to the nearest café.

  The zoo’s s
mall bistro was busy with weekend visitors, but they managed to find a spot by the window that looked out over the sunny garden, where a well-equipped playground beckoned.

  As they waited for their order, Luke talked about his new school. He’d started just a few weeks earlier and was still excited about it. The only downside was having to get up early.

  The waitress soon arrived with a fruit sundae for Luke, a slice of apple cake for Julie, and a plate of crêpes for Bastian. She also brought hot chocolates for each of them.

  Luke’s eyes gleamed with delight. As he started in on his sundae, he continued giving Julie and Bastian a detailed account of his new friends at school. He claimed to already be part of the most popular school-yard gang, which he mainly attributed to Julie’s first-day gift, a remote-controlled monster truck. He told Bastian every detail of his fiery-red Carrera RC racing machine, which was eighteen inches long and could hit twenty miles per hour.

  Luke had finished about half his sundae when he noticed Bastian’s gloves. He peered up from behind the glass dish and frowned. “What’s up with your hands?”

  Bastian shoved a bite of crêpe into his mouth.

  “I feel the cold,” he said simply. His attempt at indifference felt barely credible. The shock of his recent exposure made it difficult for him to fully overcome his awkwardness.

  Luke was satisfied with his explanation, however. “Then it’s good you didn’t order an ice cream,” he replied with a shiver. He put his spoon down and pushed the glass over to Julie.

  “Have you had enough?” she asked, surprised.

  Luke nodded. He looked longingly over at the playground, where three boys around his age were playing. One of them had a football under his arm.

  “Can I go and play?”

  “Of course, but you know the rules.”

  Luke rolled his eyes. “I know, I know. Always stay in sight.”

  Before she could say another word, he scooted off.

  Julie excused herself briefly to go to the bathroom. While she was gone, Bastian watched Luke approach the other kids. He dug out the small camera he always carried in his pocket just in case, took a photo of the boy, then stashed the camera away again.

  Luke was the embodiment of a happy child. Bastian was ashamed of the inevitable pang of jealousy he felt. He was not an envious person by nature; it was just that he would have given anything when he was young to be able to walk freely up to other children and play with them. But in addition to his constant fear of rejection, there was simply too great a risk that he would fall and injure himself. The few times he’d tried to ignore his disorder had resulted in some extremely painful consequences. He became more careful as he grew up, and his discipline had enabled him to lead his life without getting seriously hurt—provided he wasn’t running around after beautiful women.

  He looked over at Julie who had sat back down and was poking at the remains of Luke’s ice cream while staring absently at his hands. Bastian suppressed the impulse to hide them under the table. Instead he speared a piece of his crêpe and raised it slowly to his mouth. As if entranced, she followed his movement.

  She blushed slightly as their eyes met, but she set her chin defiantly. “I’m not going to apologize for anything.”

  “Fair enough,” he replied with a sigh. “Ask me whatever you want to know.” He had never invited anyone to do such a thing. But that was why he was here after all.

  “What’s the name of this”—Julie hesitated—“disease?”

  “Epidermolysis bullosa. We’re also called butterfly children, because our skin is as easily damaged as a butterfly’s wing.”

  She bit her lip. “What actually happens to you?”

  Bastian looked down at his plate. Explaining the complex medical phenomenon of his skin disorder was not easy. In an attempt to find a visual analogy, he used his fork to separate two pieces of his crêpe and pushed them into position on his plate. “Imagine these are layers of skin,” he explained, indicating the pieces. He splashed a spoonful of chocolate sauce onto one piece, piled the other on top of it and pressed them together until the sauce squeezed out the edges. “This is your skin.” He tapped the stack with his fork. “Each layer of skin is connected to the next by proteins, just like this sauce is holding these two pieces together.”

  He cut two more pieces of crêpe of the same size, dotted a much smaller amount of sauce onto them and fitted one on top of the other in similar fashion. He laid the second example next to the first. “And this is mine.” Bastian continued, “Because of a genetic defect, I’m unable to form the proteins that automatically anchor my skin layers together.” He shoved a piece of his model into his mouth. “I’m hardly able to form any chocolate sauce, so I’m more sensitive to wounding than you are.”

  “When do you get injured?”

  “Pressure causes the skin’s two layers to rub against each other, but because they’re not held together firmly enough, they tear apart, and fluid or blood fills the space. That’s how these blisters form.”

  “Does it happen all over your body?”

  “Everywhere. But I’ve got a relatively mild form. My skin is mostly stable. It mainly affects my hands, feet, and joints, because they’re what I use most in daily life.”

  “That’s why you wear the gloves,” observed Julie.

  “Well, they help some, but I don’t really use them to protect my hands from injury.” He smiled ruefully as he recalled the days before he began hiding his hands. He didn’t know which he had found more humiliating, the deprecating looks or the abusive words.

  “People,” said Bastian slowly, “are . . . cruel.”

  “Not all of them,” she protested.

  “But most.”

  “People are afraid of what they don’t know,” she said, searching for an explanation, for him, for herself, for everyone.

  It was futile to try to consider society’s motives. He’d been trying to do so most of his life. In any case, he’d had to dwell on it for a lot longer than Julie had.

  “You’re probably right,” he said with a smile. “But there’s really nothing for people to fear. That’s why I’m explaining it to you. Epidermolysis bullosa isn’t infectious, but it is a disease.”

  “So there are different forms?”

  He nodded. “There are three main forms, and each of those has several subtypes, depending on which gene is defective. The mutations are so numerous that they can’t be easily identified. And each form has different degrees of severity. It may be that a patient with a very severe case of the mildest form is affected worse than someone like me who’s affected by a milder form of the worst kind.”

  “What other symptoms are there?”

  “Apart from the visible manifestations, severe cases can have large-scale wounding, problems with the mucous membranes and teeth, hair loss, muscular dystrophy, fusion, or deformities. There’s also an increased risk of skin cancer.”

  He studied Julie uncertainly. Those were the hard facts. Confronting someone in this way with his condition was a new experience for him. To his amazement, Julie’s reaction was in no way dismissive; actually, it looked as though she was concentrating hard on what he was saying.

  She looked like an ambitious medical student, processing what she heard as she sucked in her plump lower lip.

  Looking at her, he was suddenly blindsided by the memory of those same soft lips on his sensitive hand. He longed for another kiss, to feel her warmth on his skin, but he immediately pushed such outlandish thoughts aside. He cleared his throat awkwardly.

  “Is there anything else you want to know?”

  “Is there a cure?” she asked.

  “The disease is so rare that there’s relatively little interest in it. There are a few dedicated researchers searching for cures, through gene therapy, for example, but they’ve got a long way to go. For now, all they can do is all
eviate the symptoms. But no, it can’t actually be cured.”

  Bastian could see that Julie had more questions, but she held her tongue as Luke came storming back into the café. His cheeks were rosy, and he was panting after the exertions of play. He flopped down happily on the chair next to Julie and took a gulp of his chocolate, which had gone cold.

  Luke’s cheerful presence brought their conversation to a close.

  Once the boy had rested a bit, they decided to visit the ape enclosure. It was part of the jungle house, a huge new complex of buildings designed to display a variety of species. The gorilla exhibit housed five animals, who were spread out among clusters of branches and rocky outcroppings arranged above a mossy floor in a faithful replica of the rain forest. The only reminder that this was a cage was the high glass frontage where the spectators stood.

  “Look, Julie!” Luke pointed to one of the males. A large gorilla was entertaining an enthusiastic youngster, whom he heaved gallantly onto his back. “The ape looks like Dad. He’s as strong as that.”

  He stretched up to see more, but his small size prevented him from doing so. “I can’t see,” he said, turning to Bastian. “Could you please lift me up?”

  Bastian hesitated initially, but then overcame his reluctance at getting close to the child and lifted him carefully into his arms. He was amazed to find how strong the boy was. He felt Luke’s warmth and energy as he shifted around and put his arm around Bastian’s neck. Bastian was moved by this intimate gesture—he’d never been so close to a child before.

  Obviously delighted by the new perspective, Luke pointed to another gorilla chewing on a twig. “And that one looks like Grandpa. He always looks strict like that.”

  He giggled and looked expectantly at Bastian for confirmation. “Don’t you think?”

  “I don’t know your grandpa,” replied Bastian with a smile.

  “Ah, you’ll see what I mean when you come to his birthday party.” Luke paused. “You are coming, aren’t you?”

  “Luke,” admonished Julie. Her warning tone did nothing to curb the boy’s enthusiasm.