Julie's Butterfly (10 page)

“What did he want?” asked Felix. His cheeks were flushed with fever, but his expression revealed a trace of amusement when he noticed Bastian’s mood.

“My consent to use some pictures of me for his book.”

Felix sank back onto the pillows. His glazed eyes came to rest on Bastian. “Did you agree to it?”

“I told him I’d think about it.”

“Which I assume you’re not going to do.”

“They’ve got photos of you?” asked Elena in astonishment.

“The first time I came here, they asked for some photos for archive purposes, but I refused,” said Bastian. “I assume Dr. Wangenroth needs illustrations of my type for his book.”

“Which means they’d need to take the pictures first,” said Elena.

“Exactly.” Bastian rubbed his hands together, uneasy. Elena inevitably looked at his gloves.

“I realize it would be hard for you,” she said softly. “But isn’t it worth it if you can contribute to helping others?”

“Besides, the pictures would be anonymous,” added Felix. “It’s not as if they’re going to list your name and phone number with them.”

Bastian ran his hand through his hair. Of course his friends were right. But he dreaded the thought of pictures of his hands being published in a book. He knew that he would be spared the reaction of those who saw the pictures, but he couldn’t simply break down his internal resistance just like that. His old demons were too deeply embedded for him to suddenly forget all the repulsion and scorn he’d faced over the years. Even Julie’s eyes had widened in shock when she saw his wounds for the first time. He shuddered at the recollection.

“Well, I’d do it,” announced Felix finally. “After all, I know from experience how important it is to support various theories with images,” he continued insistently. “When a scientific author invests so much time and effort in writing a book, even the smallest of hurdles can be really discouraging.”

“Not again,” murmured Elena.

Bastian looked in bewilderment between the brother and sister.

Felix’s mischievous grin was replaced by an obstinate expression. He folded his arms stiffly and glared defiantly at his sister.

Elena sighed wearily. The look she gave Felix was patient but determined. “If Dr. Wangenroth decides it’s necessary for you to stay here, then you’ll stay,” she said in a tone that brooked no argument.

“I don’t have time for this nonsense, Elena. I’ve got to get on with my dissertation.”

“Surely a day or two won’t make much difference.”

Felix turned in appeal to Bastian. “Will you please explain to my sister that a day or two does make a significant difference.”

“I’m not going to stab you in the back, buddy, but under the circumstances, we’d better let the doctor decide,” replied Bastian diplomatically, earning himself a resentful look from his friend.

Before Felix could take the argument any further, Dr. Wangenroth entered the room with an intern and the nurse who had met them at the entrance.

Elena and Bastian stood up. Dr. Wangenroth offered first Elena, then Felix his hand and briefly introduced the others. “You’ve already met Mr. Summers, and this is my new assistant, Pierre Anderson. He only joined my team a month ago and hasn’t seen a case of epidermolysis bullosa before.” He turned to Felix. “With your consent, he’d like to take a look at your injuries.”

“Be my guest.” Felix grinned complacently, though, given his obvious pain, his nonchalance was unconvincing.

Dr. Wangenroth smiled at Elena, who understood his tacit request.

“We’ll wait outside,” she said, as she and Bastian left the hospital room. Out in the corridor, they sat down on an uncomfortable metal bench.

Bastian passed Elena a cup of coffee, and she took it gratefully.

“He’s as pigheaded as our father,” she sighed.

“It’s just that he’s ambitious.”

“That’s no reason for him to put his work ahead of everything else.”

“Would you prefer that he bury his head in the sand?”

“Of course not. I’m glad he’s got such drive. The last thing he needs is total isolation. It’s bad enough that he hardly ever gets out of the house.”

“It looks like the fall has set him back a bit,” said Bastian sadly.

“I still don’t know what actually happened.”

Bastian studied Elena thoughtfully for a moment. She looked no less exhausted than Felix. Under the harsh artificial hospital lights, her face looked even paler than before. Dark rings were visible beneath her usually lively green eyes, and her lips, which normally looked so full, were pressed together in a thin line.

“Don’t you think the time’s come to get some help?” Bastian asked cautiously.

Elena frowned. “You mean a care worker?”

“Or at least some housecleaning help.”

She leaned back limply against the cold metal backrest. “I don’t know.”

“Elena, you can’t manage the impossible all by yourself. At least, not forever.”

“Then I’ll just have to try even harder.” Her voice was determined.

“You’re a tremendous help to Felix, but do you want to live for him and your work alone?”

“What’s so wrong with that?” she protested. “Lots of people sacrifice their lives for their loved ones. Whether that means helping their sick brother or devoting themselves heart and soul to their children makes no difference. They do it because their hearts tell them it’s the right thing to do.”

“But even they need breaks occasionally,” said Bastian gently. “When did you last go on a trip or do something nice for yourself?”

Elena stared into her coffee. “Probably not since our parents’ accident.”

“That was seven years ago.”

“I know,” she sighed.

“You also know that Felix’s condition is never going to improve permanently. He’ll always need help, always be dependent on you.”

“And I’ll be there for him.”

“No one would think any less of you if a nurse or a house cleaner came by a few times a week and took a bit of the weight off your shoulders.”

She shook her head. “I can’t afford a care worker. Felix’s disability payments are no more than a pittance, and my salary is only enough to pay for a decent life with a little left for emergencies.”

“Dr. Wangenroth must know someone in social services who can advise you on how to get help. The system’s undergone some changes in the past few years. I can’t imagine it would fail you now.”

She gazed sadly at the door to Felix’s room. “He’ll think he’s being a burden to me.”

“Let me speak to him,” said Bastian. He had no idea how he would broach the subject tactfully, but he knew that Felix would listen to him. Especially when it concerned his sister. Before he had a chance to give the matter any further thought, however, the door swung open. Dr. Wangenroth waved Elena and Bastian in with a smile as the intern left the room with a polite nod. Bastian studied him critically, but his eyes revealed no trace of pity or repulsion. He was completely impassive, in that way only doctors accustomed to bearing bad news while hiding their own feelings could be.

A harsh gasp drew Bastian’s attention to Felix, who was holding himself tensely on the bed while the nurse placed a gauze bandage on his leg.

“The wound on the back of his knee is infected,” said Dr. Wangenroth as he made some notes on the clipboard at the foot of Felix’s bed. “I’m afraid ointments won’t get us too far this time, Felix. We’re going to give you an intravenous broad-spectrum antibiotic.” He handed the prescription to the nurse, who hurried out to fetch a drip and the medication.

“I’d like to keep you here under observation for a couple days so we can contain this as quickly as possible,” continued the doctor.

“OK,” said Felix, throwing Bastian a meaningful look. “Sometimes you have to break the habits of a lifetime.”

“Your brother’s being uncharacteristically reasonable today,” said the doctor, smiling at Elena, who was no less bemused by Felix’s sudden change of heart.

The doctor patted Felix’s foot gently. “You’ll start feeling a great deal better as soon as the antibiotic takes effect. I’ll look in on you again later today.” He turned to go.

Felix raised his eyebrows at Bastian. It wasn’t necessary for him to speak aloud the command in his eyes.

Bastian grunted. “Dr. Wangenroth, regarding your book . . . ,” he said to the doctor in a resigned voice. “Perhaps you could give me a little information on what exactly it is that you need?”

“Of course,” replied the doctor.

“I’ll be here for a while,” added Felix, exchanging a conspiratorial grin with the doctor. “Just leave the documents with me when you come by later. I’ll make sure Bastian gets them.”

“Excellent,” said Dr. Wangenroth. “So I’ll see you later.”

Once the doctor had gone, Bastian gave his troubled friend an annoyed look. “That really wasn’t necessary.”

“Of course not,” said Felix, grinning. “But we don’t want you to come to the wrong decision. It wouldn’t be the first time.”

“I haven’t decided one way or the other yet,” said Bastian.

Smiling indulgently, Felix sank back onto the pillows. “The longest journey starts with the first step, my friend.”

C
HAPTER
14

Julie knew Bastian was no longer beside her before she even opened her eyes. The realization made her heart tighten. Bleary with sleep, she sat up, searched the floor fruitlessly for her slippers, and listened. Her apartment lay in familiar silence. She glanced at her alarm clock and was amazed to see that it was already midday. She pushed her blankets aside, triggering a grumble from Spot, and went into the living room.

“Bastian?” she called uncertainly. Her voice sounded silly to her own ears. It wasn’t as if he’d be hiding behind the sofa until she awoke from her Sleeping Beauty slumber.

Feeling a newspaper beneath her bare feet, she looked down and found his message hastily scribbled on the edge of the front page: “I didn’t want to wake you. You’re breathtaking, even when you’re asleep. Call me. Bastian.” He’d written his phone number underneath. Julie smiled with relief.

He had been so sensitive the night before. Her every touch seemed to trigger a new wave of feelings in him. She couldn’t begin to imagine what it must feel like for him to force his hands into those uncomfortable leather gloves day after day, denying himself the sensations they could bring. Though she could understand his intentions, she was glad that he had allowed her to break through his armor. Their encounter hadn’t involved anything more than a few ardent kisses, but the passion that blazed beneath his reserved exterior had surfaced a few times. She had been no different. After the wine had relaxed her inhibitions, she had been increasingly tempted to ignore her self-imposed limits.

But each time the sparks had threatened to overcome them, the mood had changed as if by unspoken agreement. And so the evening had slipped from that of a blazing fire to one of a smoldering flame, generating a hitherto undreamed-of warmth inside her.

She was nonetheless plagued by innumerable thoughts in connection with his condition. She wanted to understand him better, but bombarding him with questions was undoubtedly the wrong way to get closer to him.

Since she still had a little time before her parents expected her for their obligatory Sunday coffee date, she went over to her laptop and turned it on. While waiting for it to boot up, she went into the kitchen to fix herself a hot chocolate. Then, fortified with butter cookies, she wrapped herself in a blanket and sat down on the sofa with her laptop on her knees.

First she looked up “butterfly children,” as she couldn’t remember the scientific name of the disease. She found support associations, medical articles, and reports by those who suffered from the disease and their relatives.

She read through complex medical explanations of the disorder and descriptions of the symptoms. She looked at images, which were displayed with a warning that some people might find them distressing. There were even a few explanatory film clips. An Austrian association had gone to the effort of raising awareness about the rare condition with an extensive publicity campaign, which included visuals that showed what life with epidermolysis bullosa would feel like to a healthy person. Their posters showed barbed wire hammocks and hairbrushes with steel nails instead of soft bristles. Chairs had prickly backrests, and there was a plush teddy bear covered with cactus spines.

Julie tried to remind herself that Bastian had a mild case, but that didn’t do anything to reduce the magnitude of the disease’s effects. She gradually came to understand that butterfly children missed out on many aspects of life that she took for granted.

And that wasn’t the worst of it. The idea of living every day at the mercy of so many different kinds of pain was unimaginable. If she injured herself badly—which was rare—she could always tell herself that it would pass. But it never passed for butterfly children.

And what was left when they found a way—despite all that—to come to terms with the ever-present pain?

Exclusion and the constant fear of rejection.

Julie had seen that fear in Bastian’s eyes. She inevitably wondered how she would have reacted if he had not been wearing gloves the first time she’d met him. Did she really think it would have made no difference? Unlike most of her friends, she didn’t turn white as a sheet at the sight of blood, but she was nevertheless always careful to avoid getting hurt. Before Bastian had revealed his hands to her, she had suspected a rash or burns, but she’d ruled those out as soon as she saw them. Though he had borne her examination in patient silence, it couldn’t have been easy for him. If she’d seen his hands when they first met, however, she was ashamed to admit to herself that she would have reacted as anyone probably would, by looking but asking no questions. She would probably have just smiled politely and come to her own conclusions.

And Bastian knew that.

Even after he had explained it all to her, he had remained on his guard, as though certain she would leave at any moment.

Upon further reflection, she thought she should perhaps have ended the evening early rather than falling asleep beside him. But that had nothing to do with his disorder; she simply wondered whether a gentle farewell might have been more palatable than a lonely awakening.

She didn’t know when—or even whether—she would see him again, an unsettling realization that triggered another pang of intense longing that she found difficult to explain.

To avoid getting dragged down by her thoughts, she pushed her reservations aside, jumped up, and dialed his number. She held her breath as it rang.

And rang.

And rang.

“The subscriber is currently unavailable—” Julie threw the receiver onto the sofa in frustration. Spot, who had curled up in one corner, blinked up at her in irritation before giving her a reproachful glare.

“No need to look at me like that,” moaned Julie. “Just consider yourself lucky you’re a cat. At least you’re spared all this madness.”

Spot yawned, unmoved.

“Thanks for your concern,” murmured Julie, giving the cat a brief scratch behind an ear before going into her room. If she didn’t get a move on, she’d be late to her family coffee date. How she envied Jo her excuse. Children could really come in handy sometimes.

There was no need for her to ring the bell when she arrived at her parents’ house a short while later. Her mother was standing in wait in the doorway, critically eyeing Julie’s casual jeans, brown cotton shirt, and plain green cardigan.

Louisa was immaculately turned out as always. Her knee-length burgundy cashmere dress perfectly matched her fingernails, and even in her own home, she was not without her classic heels. It was a mystery to Julie how she could curl up on the sofa in that getup—if she ever had the inclination to do such a thing.

After a perfunctory greeting, Julie followed her mother into the imposing late nineteenth-century villa that was her parents’ home. Although the furniture hadn’t changed in years, the same could not be said for the various objets d’art that surrounded it. Her mother had clearly wasted no time finding replacements for the exhibits recently offered up for sale. Julie skeptically examined an olive-green vase that stood on an antique bureau in the hallway, clashing violently with the turquoise wallpaper. Julie didn’t know much about art, but there was no question that her mother had absolutely no taste.

Shaking her head, she entered the parlor, which looked like it had been furnished by the Sun King, Louis XIV. The combination of Baroque armchairs and chaise longues were undoubtedly indicators of wealth, but these too felt arbitrary, giving the room an artificial feel. The floor-length windows let in a dull light that was almost swallowed up by the heavy navy-blue drapes. The only source of heat came from the fireplace, where a small fire crackled. Two sofas faced each other in front of it; between these, a table was already set with coffee for two.

Suspecting the worst, Julie gave the room a searching glance. “Where’s Dad?”

Louisa settled elegantly on one of the sofas. “Your father decided to make the most of a sunny sky and have a round of golf.” If Louisa was troubled by the fact that he had absented himself from the traditional family get-together, she didn’t show it. “I have no doubt he’ll be joining us later.”

Julie pressed her lips together and sat heavily down on the sofa opposite. It was going to be a long afternoon.

However, the visit with her parents turned out to be not as depressing as Julie had feared. In fact, her mother behaved unusually amiably. Instead of boring into Julie with critical looks, Louisa shared the latest social gossip. Although Julie wasn’t particularly interested in the Williamses’ interminable family wars or Mrs. Schimanski’s recovery from bronchitis, it was better than an uncomfortable silence or a litany of criticisms.

She knew her mother well enough to realize that her polite chatter was mainly intended as a warm-up for what was to follow, but this time, Julie was ready for it. As soon as Louisa pursed her lips, turned to her, and appeared to be considering what to talk about next, Julie pulled out of her purse the notes she had taken about the items at the warehouse. To Julie’s relief, Louisa donned her reading glasses and began to go through the list.

With every object, Julie recalled Bastian’s cold glances and stony silence—until the final few, when they had laughed as they came up with the descriptions. Julie’s thoughts were miles away when her mother finally put the notes aside. She wondered how Bastian was doing, what he thought about the night before, what he was doing now, and whether he’d call her back. She stole a glance at her cell phone in the hope of a missed call message or a text. But there was nothing. She began to feel like a besotted teenager. It disturbed her, but it was pointless to deny it. Julie only snapped out of it when her father returned unexpectedly early from his round of golf, interrupting Louisa’s monologue on the value of some of the items up for sale.

Joseph Hoffmann, who gave the impression of being a serious player in his navy-blue polo shirt, cotton pants, and matching golf shoes, sank down on the sofa beside Louisa with his usual display of equanimity and greeted his daughter with a warm smile. On the narrow seat, his tall figure looked uncharacteristically ungainly, emphasizing his ample middle. He reached for a bite-sized piece of cream cake that had been left untouched on the cake stand all afternoon and popped it into his mouth. Then, ignoring Louisa’s disapproving intake of breath at this surprisingly informal gesture, he turned his attention to Julie. His gray eyes studied her expectantly but without judgment; although he only rarely expressed much interest in Julie—because his mind was cluttered with so many other things—she felt closer to him than to her mother.

They drifted into a desultory conversation about her father’s new building projects, and soon enough, it was time to leave. Their aloof farewells had long ago ceased to bother Julie. People like her parents placed such value on etiquette that they were no longer even capable of effusive or affectionate gestures.

On the way home, Julie checked her phone again. Nothing. It had now been several hours since she’d called him. Perhaps they simply had different concepts of time. She told herself it was a classic man-woman problem and nothing to get worked up about. Though that didn’t make the waiting any easier, she preferred it to the thought that he might have had a change of heart.

By the time she got off the bus by her house, she had decided to distract herself from thoughts of Bastian with some of her favorite Thai takeout, a glass of wine, and a good movie. When she emerged from the local Thai restaurant a few minutes later with her glass noodles, a cold wind was blowing. Shivering, Julie raised the collar of her coat and began hurrying toward home. She stopped at the sound of a familiar whistle followed by someone calling her name. She turned in surprise and saw Gabriel, a former classmate from law school, running up to her.

“Hola, querida,” he said and hugged her warmly.

“Hey, how’re you doing these days?” asked Julie.

“Good, thanks. And you?”

“Everything’s great. I thought you were staying in Madrid for a while.”

Gabriel’s dark eyes shone. “Changed my mind,” he replied with a shrug. He had always been a bit fickle. He had been part of her small group of friends from the very start and had made the monotonous classes a little more bearable.

“Why are you back?” she asked.

“Two months with my crazy family was quite enough,” he said. “Well, that and I have to retake my contracts-law exam in three weeks.”

Julie made a face to show her sympathy. “Not good.”

“Oh, it’s no problem. I’ve got two more attempts.” He grinned in his carefree way. “Magda told me you dropped out?”

“I just couldn’t handle it anymore,” confirmed Julie.

“That’s too bad. We’ll miss you.”

“And I’ll miss you.”

“I’m having a small party on Friday at my apartment. Will we see you there?” he asked hopefully.

“Sure, why not?”

“That’s great.” He looked at Julie’s food. “Are you on your way home?”

When Julie nodded, he put an arm around her shoulder and turned her in the direction of her apartment. “I’ll walk you part of the way. It’s so miserably cold out—high time spring put in an appearance.”