In/Exhale isn't a traditional story; think of it more like a soap opera that stretches for years and years. The first few years of this story are set in the fictional town of Jonesville, Iowa, USA.
Enjoy the first part of the first day I'm sharing with you; don't worry, I have plenty more and hope to publish at least initially on a weekly (or bimonthly) basis. For now, meet Kai, his brother Jon, and Renee, and stay tuned for more next week!
For Easy Navigation of the story thus far:
TABLE OF CONTENTS
August 21, 2000
"Do you have your cell phone?" Jon stood in front of Kai in the small kitchen of their shared apartment, stuffing papers into his briefcase, his white coat bunched up on the counter beside it, his slightly damp medium-length wheat-colored hair uncombed and frazzled.
"Yes," Kai sighed, leaning on his crutches. Unlike his brother, who always seemed to have his mind occupied, considering his appearance secondary to his work, Kai was dressed neatly in a short-sleeved button-up and jeans, making sure the collar hid the remains of his tracheostomy scar. He wasn't ashamed of it, like his other scars, but it was ugly and a bit intimidating and college was supposed to be a fresh start. He didn't need everyone immediately zoning in on the pink navel-like scar on his neck and asking questions.
"And your inhaler?"
Kai shifted his weight and tried not to sigh again. He knew his brother worried, and he was just trying to tell Kai without so many words that he loved him and hoped his first day of classes went well.
"I haven't had an attack since the transplant," Kai reminded him.
"I know," Jon said, distracted for a moment as if he'd forgotten what he was doing. After a pause, he shrugged, shut his briefcase, and slipped the strap onto his shoulder. "But you're the only patient we know of with confirmed FS who had a successful lung transplant of any kind. It's impossible to say how your body will react." Jon snatched his white coat and flung it over his shoulder. "I'd just feel better if you had your rescue inhaler with you, just in case."
Kai adjusted his weight, slipped his right hand off the grip and pushed it into his pocket, pulling out an inhaler just enough for Jon to see it before shoving it back in. "I'll be fine, Jon."
Jon frowned, his thin lips pursing together, but he nodded.
"I'd tell you to relax, but I don't think you understand the meaning of the word."
Jon's frown deepened a bit, and he managed to free one hand enough to place it on Kai's shoulder. He could hardly believe his little brother was actually taller than him by an inch or two. Glancing at Kai's crutches, he added, "I know Troy said you could go without those for a while, but don't overdo it, OK?"
Over the past few months, Kai had worked hard to get back on his feet–literally–and on most days, as long as he didn’t push himself too hard, it was almost like being normal. His left foot and ankle still refused to obey, and the rest of the leg was a little sluggish sometimes, but he’d been able to keep the spasms mostly manageable, and he hadn’t had a hypotonic crisis in a while, meaning he could leave the bulky KAFOs he hated in his closet for now. Still, he clung to his forearm crutches most of the time, partially out of habit, partially to keep from putting too much stress on his stronger right leg. Because, as he knew well from years of experience, too much stress–psychological or physical–could trigger an MLS attack of cascading myotonic spasms, leaving his muscles painfully locked and stiff.
Kai sighed. "Yes, Dad. I promise. If you promise to make sure you eat." It was Kai's turn to frown as he noticed Jon was leaving the apartment yet again without eating or even drinking anything, a dangerous prospect for someone with diabetes. "Doctors really do make the worst patients," Kai muttered as Jon headed out the door, seemingly ignoring him.
"I'll probably be home late, but page me if you need anything," Jon called just before Kai heard the front door slam.
Jon leaned against the counter of the nurses station, making notes into an open chart.
Jon looked over enough to see Joanna Johnson, one of the most respected nurses on floor six of Jonesville Memorial Hospital, which was dedicated mostly to pulmonary patients. She'd become almost like a mother to Kai, as Kai’s FS had brought him in frequently for treatment over his lifetime.
"He's well," Jon said curtly, turning back to his chart, then mumbling, "Too well."
Jo heard him clearly. "How can someone be too well?"
Jon sighed and shut the chart, shifting so he faced her, one elbow on the counter. "We know so little about FS. We don't even really understand the mechanism of disease. All we really know is it’s obstructive, both acutely and chronically. That it has symptoms that mimic severe asthma and CF, and that it causes rapid bronchiolitis obliterans in some patients. It’s no wonder I’ve had a hell of a time convincing anyone it’s a distinct disorder."
It was BO that had hit Kai hard less than a year out of high school, causing extensive fibrosis in his lungs that had made them nearly useless, forcing Kai to struggle for every breath, barely able to keep his body oxygenated even on 100% oxygen delivered transtracheally. It had taken all of Jon’s will and clout, along with the help of Dr. MacDonald and Dr. Johnsen, Jon’s mentor and Kai’s pulmonologist for the past twenty years, respectively, not to mention the pathological evidence, to even convince the transplant committee to consider listing him for transplant. Then they’d spent years waiting, as Kai’s condition deteriorated, Jon worrying they wouldn’t find a match in time, wishing they had another living relative so he could offer himself as a living transplant. And then, when a match had finally been found, there’d been another battle with the committee because of Kai’s MLS, several physicians arguing that because of his progressive physical disability, the transplant should go to someone else. Thankfully, MacDonald had convinced the committee and Kai had successfully undergone the double-lung cadaveric transplant, but Jon had never been able to look at some of his colleagues the same after that.
Jon was grateful that he'd been allowed involvement in Kai's care at all, because although they no longer shared a last name, it was a small community who knew they were brothers, and it normally wasn't ethical for a doctor to treat a relative. But there were extenuating circumstances, and despite his reservations to Jo, Jon had managed to acquire several substantial grants for research that the hospital greatly appreciated. As a result, Jon was granted more freedom and leniancy as long as the money and publicity kept rolling in.
"Deep breath," Jo said with a warm smile. "You’re doing good work here. You’ll get there. Anyone with any sense will look at your patients and see they’re not true asthmatics, because you don’t see that level of mucosal build-up or fibrosis in asthma. And CF is easy to rule out even if the respiratory symptoms suggest otherwise."
Jon nodded. "I just worry . . . what if . . ." Jon struggled to say what he meant. "Of course we told the committee the transplant would be curative, and right now it looks that way, but . . ." Jon let his voice drop off, unable to speak the words he feared so much.
Thankfully, Jo nodded as if she understood. Then she placed a comforting hand on his arm. "It'll be OK. And even if it won’t, you should spend time with him while you can. Most of us are tired of seeing you around this place all the time anyway."
Jon managed a laugh, rare for him, and swept his hand through his hair. It was a habit he'd developed as a kid and had never managed to shake, even in med school and residency when he'd be chastised for it repeatedly. Even when he'd tried to clip his hair short so he'd have nothing to pull fingers through, he'd still found his hand going through the motion.
"You tell him I said hi," she said, her eyes twinkling a bit. "And as much as I miss him, I hope I don't see him around here any time soon, all right?"
Jon nodded and watched Jo turn to go. "Jo--thanks," he said, grateful for the warm smile she flashed him as she turned. He knew he couldn't thank her enough for being there for Kai all those years that he couldn't.
It wasn't his first time on campus, or even his first college class, but a flutter of nervousness still floated in his stomach as Kai pulled into the closest available handicapped space to Thomas Hall, where he had his first two classes. Kai sat in his car for a moment, the engine tinking as it cooled down, his eyes shut, focusing. This time would be different, he told himself. He was different. As if to remind himself of the fact, he took a slow deep breath, letting it out easily. Kai opened his eyes one by one, noticing the students, all of them younger than him, milling about, bags slung over shoulders as they hurried off to their classes, and glanced over at his crutches. Troy, his physical therapist, had encouraged him to spend a few hours a day without them, and Kai was anxious for the anonymity not needing them would bring.
He was old enough now that probably none of the students would know him, and he'd have the chance to make new friendships, he hoped. The new start he desperately needed. Still, he hadn't yet tried to manage much without them outside of the apartment, and it made him nervous to leave them in the car. Kai sucked in a satisfyingly easy breath, grabbed his bag, and pushed the door open.
Jonesville University had a large campus, spread out over miles, with generous space between buildings, plenty of parking nestled around each one. Due to the intensity of the cold winters, and partially because the campus had expanded gradually over the years, it was a necessity for many students to bike or even drive to each class, and Kai was grateful for that fact, knowing he could never manage on his feet for long, especially if he couldn't rest in between.
The buildings of Jonesville U had been built over the years; the oldest, from the founding of the university, were a more traditional style--serious stone buildings that spoke to tradition and expectation of what a college should look like. The newer buildings ran the gamut from artistic and modern to plain and efficient. Thomas Hall had been built only ten years previously, and was a five-story rectangle of red brick that had little architectural character to its many square windows. But new meant the elevator almost never broke down and didn't take an eternity to take you from the first to fifth floor, unlike Jones Hall, one of the oldest buildings on campus, named after Horatio Jones who'd founded the town two centuries ago.
Kai had been relieved he didn't have any classes there this year as he carefully entered the building, glad that without his crutches no one seemed to notice him, even if he did have a slight limp from his weaker left leg. He'd hoped Troy could help him with it, but he knew it was gone. It was a small price to pay, and the AFO he wore helped. And it didn't really matter, if he could slip into a crowd like this and go completely unnoticed. It pushed a smile to his face as he stepped into the elevator. He hit the button for three and watched as a few other students mingled in. Freshmen, they looked like. They were only four years younger than him, but they looked so youthful. Kai sighed and leaned against the side of the car as the doors shut and they began to rise. Had he ever looked that young?
Kai tried to bite back the wave of regret that swept over him. Sure, he’d lost a few years, but that was behind him. He had a future now, one he hadn’t thought would be possible, and he needed to focus on that. He’d put the past firmly behind him, and focus on the now, on the possibilities ahead of him instead. And none of these people had to know any of it, if he could help it.
It only took a few minutes to reach the third floor, and Kai shuffled out behind a couple of cute girls. He wondered if he could ever bring himself to get close to someone again. Not just in bed--he had Nikki for that, and what they had was incredible--in fact, he planned on seeing her tonight after his classes. But growing up as an orphan in a home, he'd always dreamed of having a family someday. A wife whom he loved, and who loved him, some kids. Most of his life that had been as big a fantasy as flying, but then he'd met Becca. Becca, who he'd thought could maybe be the one, who would stick with him despite everything.
Kai felt his hands balling into fists as he wandered down the hall for his first class. New start, new start, he thought, fighting his fingers' instinct to sign the words as he finally found room 312, shuffling in behind a few other students.
Room 312 was one of the large auditorium-style lecture halls on campus, with stadium seating leading up in tiered rows, divided into three sections by stairs. It was still early; class didn't start for at least another twenty minutes, so plenty of seats lay empty. Kai glanced at the front row, where there were gaps obviously intended for wheelchairs and sighed despite himself before turning his attention to the stairs and the far top back of the room. Troy had told him to push himself as far as he reasonably could, and although he had avoided stairs as a general rule for most of his life, he decided to give them a try.
Without his crutches or a handrail it was harder than it could have been, and halfway up Kai debated stopping. But he'd been trapped at the bottom of rooms like this so often in his life, and the thrill of his breath coming so easily even as his exhalations and inhalations grew quicker and shallower, encouraged him to keep going.
When he finally reached the top, he collapsed in the first available seat, staring down and reveling in his achievement. He knew it was silly, and it wasn't like he'd ever seen a mountain, but he realized this must be what it felt like to climb one and look down, admiring the view, knowing what you did to earn it. It wasn't the most practical seat for various reasons, and Kai wondered if they had large lecture halls like this at Gallaudet, and if so, if they had some kind of camera and projection system so you could still see the professor's signs even from far up in the back row.
Although Kai had grown used to spoken language by now, and had even come to appreciate the benefits of not needing to use your hands to speak, he missed ASL terribly. Jon had lost most of his ASL fluency over the years they were apart, and Kai hadn't really kept in touch with David, his old roommate from County House, or any of the other kids he'd gone to school with before the state had forced him into the hearing high school once they’d realized he’d grown out of the muteness of his youth. There'd been a few times while he was recovering after his transplant he'd considered looking David up, but that was part of his old life. Maybe if he were able to graduate he could become a teacher at the deaf school here--or maybe even somewhere else. The thought of leaving the town--the state--was exciting. Kai had lived in Jonesville his entire life, and although he loved the place--it was home--he wondered sometimes about the rest of the country, the rest of the world. Jon had traveled with his adopted father, had gone to college at some fancy school on the East coast, but he'd still come back home. And Kai knew, even if he somehow managed to leave Jonesville, that Jon was here to stay.
Kai was so lost in his own thoughts he hadn't realized a girl had sat down beside him. It was her aroma that got him first; one of the things Kai had enjoyed most since he'd been extubated post-transplant was getting his sense of smell back. She smelled delicate and floral; he couldn't quite place the exact scent, but it was subtle and lovely. A body spray, perhaps, instead of a perfume. Certainly not pungent enough to provoke an attack if this had been before.
When he turned his head, he realized she'd been staring at him, and for a moment, he grew nervous. Had his collar dipped or come undone and she could see his trache scar? He knew it was creepy looking, especially if you'd never seen anything like it before. Reflexively, he brought his fingers to his neck, and maybe she sensed she'd been staring, because she blinked, shook her head, and smiled.
"Sorry." She cleared her throat. "I'm Renee Poche," she said. Her voice was soft and sweet like her scent; clearly, she wasn't from the Midwest.
"Kai Fox," he replied, offering his hand, reluctantly dropping it from his throat.
She smiled. God, she had a beautiful smile. She was petite; it was hard to tell how tall now that they were sitting, but it was yet another indication that she wasn't from around here. Her hair was dark--almost black--and curly. Kai didn't know much about women, but it looked natural, her thick tendrils perfectly framing her face in a managed chaos he found entrancing despite the fact that Becca also had curly hair.
"That's an unusual name. You a freshman?" She asked as she pulled a notebook and pen out of her bag.
Kai flushed slightly, realizing how silly it was for his body to react this way. "Yeah." He couldn't manage to say more than that.
She flipped her desk out and laid her supplies on it, smiling the whole time. "I'm an architecture student, so my program's five years. I'm a second-year right now. But I put off most of my core classes last year, so here I am."
Kai grinned despite himself. He wanted to touch her curls, feel their softness on his skin, never stop smelling her unique floral scent. His stomach churned and he knew immediately he wanted to know more about her--everything. Suddenly, his chest grew tight, and his face paled. No. This hadn't happened since. . . . Reflexively, he dropped his hand to his right pocket, feeling the inhaler beneath his palm.
"You OK?" Her face was so concerned and sincere, and she'd reached for him, placing a warm, tiny hand on his arm.
He stared at it, forced himself to take a few slow breaths, realizing he was OK. They'd experimentally grafted the most important nerves, so he had more sensation than most transplant patients, but it was different than before, something he was still getting used to. The tightness could have been his imagination. How was it that this girl he hardly knew, whom he'd just met, could make him feel so off kilter? He eased his lips into a smile to reassure her and give backing to his words.
"Yeah. Sorry." He swallowed. "First day jitters, I guess," he added with a bit of a blush.
She laughed, a musical, lilting sound that made him grateful for his hearing. "So what classes are you taking this semester?"
Kai thought a moment. "World History I, English Comp, Intro to Philosophy, Intro to Psych."
The professor had arrived and was setting up for the lecture, writing "World History I, H101, MILLER" on the white board.
"Cool," she said with that same warm smile. "Who do you have for Comp and Philosophy?"
Kai tilted his head, thinking for a moment. "I think it's Boer and . . . Mc-something."
Kai nodded. His left calf had begun to spasm slightly, enough to be painful but not so much he couldn't ignore it. "Yeah, I think that's right."
"Me too," she said. "I mean, I have those same classes. We should sit together in them, too."
Kai felt a warm flutter in his stomach. "I'd like that."
Renee looked as if she were about to say something else when the professor cleared his throat and began to speak. He was a short, chubby, bearded man, or perhaps his height was an illusion created by the distance, dressed almost stereotypically in khakis, simple button-up, and tartan sportscoat with brown patches on the elbows.
"Welcome, ladies and gentleman, to World History I. This course will fulfill your common curriculum requirement, but only if you study hard and pass my exams."
Kai knew he should be taking notes, but he'd nearly forgotten himself, so entranced by Renee, so he fumbled for his bag to grab a notebook and his own pen. It could have been his imagination, but she seemed to be casting glances at him every few minutes, smiling the entire time.
"Many people ask, 'why study history?'" Professor Miller leaned on his podium as if he were studying the class, taking everyone in one by one. With nearly three-hundred students in this section, there was no way he could know them all, and Kai knew he and Renee were just two in a sea of faces. "Of course, the easy answer is 'because then we're doomed to repeat it.' However, I think life is far more complicated than that."Professor Miller abandoned his podium and crossed so he was nearer to the first row of students, laying one arm across his stomach and balancing his opposite elbow in the palm of his hand, supporting his chin on his fist. "I believe that the past, however behind us it may seem, is never truly gone." Miller again searched the faces in the crowd, and for a split moment, despite being dozens of feet away, Kai felt as if their eyes met, and his pulse quickened, nervous, but not sure exactly why. He glanced over at Renee, partially so he didn’t have to look at the professor, and partially to simply steal a peek at her. She had her head bent over her paper, as if she were taking notes, but he could see from here her page was blank.
"The past is always a part of us, and as much as we may like to forget that, not only can't we, we mustn't." Professor Miller nodded his head, then turned his back on the audience.
Kai knew Miller wasn’t speaking to him, couldn’t be speaking to him, but why did his words feel so personal? And why couldn’t one forget the past? Kai had done it before, shifting dark memories into the deep recesses of his brain, never talked about, never thought about. Why should now be any different?
Hope you enjoyed this first selection! More coming soon, in which we meet Nikki and learn a bit more about Jon!
Continue to August 21, 2000 - Part 2 --->