Like Wings, Your Hands: A Novel

1. May 13, 2015: 20,000 feet

On the plane to Bulgaria, Marko’s mom had to catheterize him in his seat. She placed a blanket over his lap for privacy. Marko was watching baseball on his iPad but only the games he had saved on the device because he didn’t have Wi-Fi. Sitting beside his mom, he was careful to avoid opening the secret folder where he had his private links and files. Marko noticed how tense and nervous his mom was when she catheterized him. She moved quickly, like a bird. Marko didn’t like to watch her thread the tube into the tip of his penis. He was always disturbed by how far she seemed to push it inside his body—was there really that much space in there?

Watching made math happen in his head, unwilled. Sometimes he could see sounds, smell colors, taste shapes. And sometimes, when he saw the unfeeling parts of his own body interact with anything—his own hands, his mom’s, objects, the outside world—the math happened. It wasn’t just math; it was a vivid, visceral, sometimes painful experience of numbers. The numbers moved in his mind. Sometimes they’d fly fast—that’s when they hurt. But sometimes they were slow. They could be dark, almost black, or they could be blindingly bright, or somewhere in between. Each number was a three-dimensional shape with a color and a texture. The number seventeen, for example, was mostly blue, a little yellow, round but not perfectly round—more like an ellipsoid—and it had a smooth texture like marble. Nine thousand and fourteen was rough and dry but also soft like wool, diamond shaped, and beige. Every number between zero and ten thousand had color and shape and texture. And because every feeling Marko experienced, physical or emotional, also had shape and color, each corresponded to a number or a set of numbers. So sometimes, when Marko didn’t know what he was feeling in words, he would know in numbers. He would think: I’m feeling 4,372, which is a yellowish-brown, sharp-edged asymmetrical triangle.

The math happened when his unfeeling parts came in contact with anything that had to do with spatial navigation in the half of his body whose boundaries he couldn’t sense. The numbers came together to give him the perception of the precise location of each point in space where his body ended and another thing began.

Marko pressed his face into his mom’s hair: long, straight and black threaded with gray. He inhaled her smell—which he associated with home—leaned back, and looked at her. He could see his reflection in her eyes: two tiny hims staring back. His face was long and narrow, his wire-rimmed glasses perpetually slipping down the bridge of his nose. His voice was deeper now that he was fourteen and his pubic hair was thicker. He had a single brown mole sprouting two coarse hairs on one pale cheek, matching similar moles on his mom’s neck and body. His hair was dark blonde and fine, unlike his mom’s thick, black mane. He changed his focus from his reflection to her eyes, their colors like autumn in New England: brown and burnt orange and yellowish green.

Being 20,000 feet in the sky, trapped inside a metal tube, hurtling forward at hundreds of miles per hour gave Marko an uneasy feeling in his stomach. It wasn’t quite sick but almost. Any time there was turbulence, Marko imagined a gust of strong wind flipping the plane and sending it spiraling down to crash into the ocean below. At this speed the surface tension of water would be the same as that of pavement—he knew because he had looked it up—and he imagined the plane as it smashed apart, all the scraps and all of the people and limbs and Marko’s wheelchair would sink to the bottom of the ocean floor, catching in the dense foliage of kelp plants to gather algae thick as moss.

He has spina bifida. Paralyzed from the belly button down, Marko’s mom said to the woman seated next to them in the three-seat row. The expression on the woman’s face in response was as familiar to Marko as the sound of his own name.

I’m sorry, she said, which was the soundtrack to the familiar facial expression. If it had meaning, it would have been mildly offensive to Marko because it would mean she was sorry about who he was—sorry about his heaviness in her mental notebook, the burden his existence was to the imaginations of able-bodied people—but thankfully, it was as hollow as the look of pity it accompanied. Unfortunately, the words didn’t seem to have lost their meaning to his mom, because she looked even more nervous.

To calm himself and distract himself from his mom’s nervousness, from the tube threaded into his penis, from the potential crashing of the plane, and to counter the swirling math, Marko decided to concentrate on something else. He looked for all of the printed numbers he could see around him and added them all up, dividing the total by three. If it were a clean divide, one that resulted in a whole number, then he was safe and the plane wouldn’t crash. If there were a fraction left over, he would simply add those numbers to the whole number and divide by three again. He would repeat this until he got a whole number as a result.

In the midst of this mental arithmetic, Marko’s mom pulled his arm down a little roughly. He wasn’t even aware that he’d had his hands up in front of his face again until she yanked on him. He tried to keep them down but they sprung back up involuntarily. He put them down again and kept them at his side, but when he did, he wasn’t able to do the adding and dividing in his head. His thinking was stuck. He started to panic. His hands went back up.

I’m sorry, sweetie, can you hold still for just a moment until I’m done here? His mom’s voice was soothing. He dropped his hands again and tried to relax. But then turbulence happened and he still hadn’t gotten to a whole number!

He quickly decided on another way to keep the plane safe. He listened for anything he could overhear from people on the plane, any words he could make out from their conversations. If he whispered those same words aloud to himself three times and then did it again with the next words he heard, the plane would stay safe. Marko listened. It was hard to hear voices over the roar of jet engines. He thought he heard that was funny after someone nearby finished laughing. Marko lowered his head and whispered, that was funny as quietly as possible three times.

You okay? His mom asked. He looked up at her. She smiled. He nodded, listening for the next words. But now she was done catheterizing him and she got up to go throw out the waste. Marko looked at the woman in their row. She was 92 percent uneasy being left alone with him. To make her feel better, he tried to make conversation.

I’m going to meet my grandfather for the first time in Bulgaria, he said. She gave him a nod and a tight, fake smile. Her uneasiness wasn’t reduced. In fact, it went up a few percentage points. He decided to take it up a notch and over-share.

It all started six months ago when I found this book and my mom’s journal. And this box that I could lay down in and sort of time travel and have weird dreams. He pulled out the book and held it up to her. The same strained smile stared back and her uneasiness had now topped out at 100 percent. She got up and walked off down the aisle. He was free to use his hands again, so he went back to the more comfortable task of addition and division.

2. May 13, 2015: 20,000 feet

On the plane to Bulgaria, Kali saw the high view of the past nineteen years of her life since she’d left there to come to America. The years contained so much—falling in love, having another abortion, having a baby, falling out of love, getting divorced, watching him leave their child, accepting her mother, Lydia, as the surrogate other parent to her son when she hadn’t even filled that role for Kalina as a child. Only Lydia called her Kalina anymore. In Bulgaria, before 1999, she had always been Kalina. In the States, after 1999, she was Kali.

When Kali left Sofia, she went to the South Shore of Boston to be a nanny for wealthy children there. Lydia followed her six months later. Kali’s host family let her mother stay there with Kali for a few months until Lydia herself found work as a nanny. Lydia’s wealthy children belonged to a family with a townhouse in Cambridge and a mansion in Lincoln, Massachusetts.

Kali recalled all of this while she catheterized Marko. She was embarrassed to have to do it right there in his seat, but there was no other option. His wheelchair was gate checked and she couldn’t carry him to the tiny airplane lavatory. She put a blanket over his lap for privacy, even though he seemed oblivious. He was busy with his screen time. He was watching reruns of Red Sox games. Kali knew he’d rather be watching porn, or kissing videos as he called them. He had a cache of videos of people kissing, both people and cartoon characters, actually—a vanilla collection that he allowed his mom to know about. But Kali was aware of the harder core stuff he had hidden behind a password-protected folder. She’d thought about making him get rid of it, but decided to let him be. There was the inevitability of it on the one hand, him being a teenage boy much like any teenage boy, but then, on the other, was the heartbreaking part. The part Kali couldn’t bear to think about. What kind of romantic life would he be able to have with no sensation in his pelvis—no sensation anywhere below his waist?

Kali knew that sex is 95 percent mental—that the pituitary gland is the hub that produces all the chemicals that make the body feel so on fire about it. And Marko’s pituitary gland was alive and functioning, so why couldn’t he have a full and active sexual life, even without the use of his penis? Even without a partner? Thus, the videos. Kali couldn’t deprive him that.

The woman in the seat next to her in their row was staring unabashedly at Kali prepping the catheter. She looked away when Kali inserted it into Marko’s penis, and then looked back when she re-covered his lap. Kali made eye contact with her and she looked away.

He has spina bifida. Paralyzed from the belly button down, Kali said. The woman gave her that look she knew so well. It was a look of admiration and pity that Kali couldn’t stand. It made her nervous to have it this close to her. She fought the urge to slap the woman, to knock the look right off her face.

I’m sorry, the woman said. Kali didn’t respond. She went about taking the cath back out, as the bag was nearly full. Marko was moving his hands rapidly and rhythmically, so Kali couldn’t get a steady hand on the tube. She grabbed his arms and pinned them down, which startled Marko. Immediately, she regretted having been so rough with him.

I’m sorry, sweetie, can you hold still for just a moment until I’m done here? she said, apologetic in tone. It worried Kali slightly that Marko held so still and was so quiet while she removed the tube and cleaned him up.

You okay? she asked. He nodded and she smiled. With the used catheter and bag gathered up, she needed to get up and dispose of everything and wash her hands. She gave a look to the woman next to her and started to rise, aware even as she did that it was a simple luxury—this bearing of weight on her legs—that her son would never experience. As the woman stood up and moved aside to let Kali out, that thought made her aware, more intensely than usual, of how completely this basic guilt was woven throughout her life and everything she’d done since Marko had been born fourteen years prior. This brought her thoughts, again, to Lydia and when she first came to the States.

Kali moved carefully down the plane’s aisle, absorbed in the memory. Lydia had come initially, or so she said, to merely visit Kalina. But after a month and a half lapsed and her mother was still there with no plans of leaving and dwindling money, Kali began helping her look for work. Kali understood that Lydia didn’t want to return to Bulgaria and be alone with her father, Todor, who was chronically depressed and who routinely threatened suicide, to the extent that it no longer had any shock value left. Kali herself had just stopped talking to him shortly after moving away, not wanting to bear the emotional burden of his pain.

The kind of work that could sponsor a visa and keep Lydia in the United States for longer than six months was abundantly available in New England, given all the rich, white people having kids. After Lydia found a family to nanny for, Kalina didn’t stay at her job long. She left and became a student, going to graduate school for psychology. That’s where she met Marko’s father, Zach, and started that whole journey. Looking back now, Kali could see the inevitability of it all—like a black line running across the clear sky, its unwavering trajectory carved solidly against a dramatic canvas of deep blue.

Kali, Zach and Marko spent whole days with Lydia at the mansion in Lincoln, swimming in the pool, lounging in lawn chairs in the family’s acres-big backyard. After the parents divorced, the man promptly remarried a much younger Russian woman who didn’t like Lydia. With the kids grown and off to college, Lydia soon found herself out of the mansion and back on her own in a country that still didn’t feel like home.

Marko was six at the time and Lydia came to live with them. Kali, having become integrated into the yoga community, connected Lydia with people she knew at the ashram—a spiritual yoga retreat in the suburbs. Lydia was able to get a small apartment there and a job cooking as well as another part-time job at the local Montessori school. This way, Kali was able to visit her at the Ashram and sometimes leave Marko there with her for a few days so she could get away. To Kali’s mind, it was the perfect solution; Lydia could also come to the city to visit Kali and Marko, but they didn’t have to be on top of each other. She loved her mother, but too much time together often led them down a path of buried resentments from older, deeper wounds.

And now Kali was headed back to Bulgaria for the first time in fifteen years. She opened the door to the little airplane lavatory, disposed of the catheter bag, and washed her hands. She thought of her son. Marko would see Sofia for the first time and meet his grandfather, Todor, who Kali thought might actually, finally, be dying for real. When Lydia had told Kali she was going back to stay with him because he was sick, she had known it must have been serious. Faced with the reality of his death after having been estranged from her father for nearly two decades, she decided, somewhat spontaneously, to return and see him one last time and let him meet his grandson.

When Kali walked up the aisle to return to her seat, she squeezed past the woman who had been sitting next to her headed in the opposite direction, looking uncomfortable. Marko must have over-shared something with her, Kali thought, then laughed to herself. She returned to her seat to find her son, face upturned and illuminated by the sunlight streaming in through the window, hands carving elegant arches and angles in the space before his face.

3. December 13, 2014: Cambridge, MA

Marko sat in his room and stared at the wall to think. It had been a year since his dad moved out and went to California. Marko didn’t mind that his dad was gone. In fact, he preferred it to when they had all lived together. His mom and dad had fought a lot. And Marko didn’t get as much one-on-one attention from his mom when they all lived together. Sometimes he acted like he did mind because that would get him more attention, but he only did that a very few times when he was feeling extra lonely (number eleven) or extra uncomfortable (number fourteen). In fact, he didn’t even want as much one-on-one attention from his mom anymore. What he wanted was to know her—to know her 100 percent, or at least 80 percent. He knew her only 17 percent. His mom never talked to him about what she felt for anyone but him. She never talked about what made her afraid or lonely or what she wanted out of life. Marko knew that wasn’t malicious. She was doing it to protect him. She wanted him to feel safe, and if he knew she was fallible (which he knew she was), she worried he would not trust her.

Because he wanted to know her more, he started asking her questions. He would ask about her friends and if she was dating anyone, but she would answer with short, meaningless phrases like so and so is a good person or I’m not interested in dating. When his questioning didn’t lead anywhere, he decided he would have to be a detective and find out for himself.

One practice his mom had started since he turned fourteen was leaving him home alone sometimes. He could create this alone time if he asked her to go and get him something.

Mom, can you please get me a smoothie from that health food store? I really have been craving one, he said that second Saturday afternoon in January when it all started.

When was the last time you had one, honey?

It’s been weeks, he said. He felt a little bad because he knew that they were expensive and that his mom never had a lot of money. She never told him she couldn’t afford something, but he knew.

I’ll pay you back, he said, knowing he could not. Still, he liked to think that eventually he would find a way to earn money and be able to not only pay his parents back for taking such good care of him, but also help to take care of them.

It’s not about the money, babe, she said, I just don’t know about going out in this weather.

You go without me. I’ll wait here, Marko said and smiled. His mom smiled, too. She knew he was proud to be trusted on his own for a little while.

Okay, I’ll go get you a Green Goddess, how about that?

Yes! Yay! Marko pumped the air with his fist, which she loved and which always made her laugh and hug him.

As soon as she closed and locked the door, Marko wheeled himself into her bedroom. He looked inside her drawers and opened the various small containers on her dresser, but all he found were earrings and hair barrettes and clothes and underwear. He went to the small bookcase just behind the wall inside her room and scanned the spines. He was familiar with the books his mom kept next to her bed. He’d read most of the English ones, but not the ones in Russian, Bulgarian, and French. His mother’s fluency in four languages was something he admired and envied, but he’d never had the patience to learn other languages. There was too much to learn and to think about in English. He recognized a new book on the shelf and he picked it up. It was a hardback book with a gray cover and the words:

THE

UNBEARABLE

LIGHTNESS

OF BEING

A NOVEL BY

MILAN KUNDERA

He opened it and flipped through it. There was some writing that was highlighted on a page: What does this mad math signify?

This was how Marko first read the line, and he was so excited to find his own latent, burning question in print in a book under his eyes that he nearly threw the book to the floor. Was this author writing about the mad math in his head? Did he have the mad math, too? Marko had never considered this phrase before exactly, but he thought it was an excellent name for the numbers and shapes that operated in his mind: the mad math.

But when he reread the line, he saw that he’d misread it.

To think that everything recurs as we once experienced it, and that this recurrence itself recurs ad infinitum! What does this mad myth signify?

Myth. A much different word than math.

Still, she had highlighted it, so it must mean something to her. Or had someone else highlighted it?

He turned back to the front of the book and saw an inscription on the title page. It read: To Kalina, my firstborn: this will help you perfect your English and heighten your thinking. Let it make you smarter, and more interesting! All my love, Papa.

Marko’s heartbeat quickened. His mom never talked about her father and Marko had never met him. All he knew was that he lived alone in Bulgaria and was a sad man. Marko’s mom had a brother who died, also named Marko, and she talked all about him, but never their father. The inscription in the book was dated January of 1985. A quick calculation. His mom would have been eleven years old. If she could read it when she was eleven, then Marko, being fourteen, could certainly read it.

Marko replaced the book on the shelf and picked up another book, a journal. Its cover was blank yellow fabric, worn and a little dirty. Was this her diary? Even handling it made him feel guilty. He knew that diaries were for secrets, and not for anyone else to read. Still, he needed to know her better. It was important, more so than he could explain. It was like there was a deep well inside of him and he was stuck at the bottom. Knowledge about his mother was a rope that he could hold onto, one that could possibly lift him out.

He opened the journal. Inside, every page was filled with his mom’s tiny print handwriting. At first, he avoided reading it, feeling ashamed. In the back was a stack of papers. He unfolded one and saw that it was a letter to his mom from his grandfather. He knew that she rarely spoke to his grandfather—they’d been estranged for most of Marko’s life. He couldn’t resist. He read the letter and then replaced it. He then read several pages of the journal, careful not to lose track of time and read for too long.

Satisfied, feeling that he did know his mom just a bit better, he closed the journal and returned it to the shelf. He wheeled out of the room just in time to hear the key unlocking the door. His heart pounded and he felt lightheaded. He glanced back toward her room to check for evidence that he’d been there. He saw none. The door opened and his mom stepped inside. She had a brown paper bag and two plastic cups filled with green sludge.

I got us scones, too, she said, smiling. But then her smile fell off. Her mouth was a straight line and her forehead crinkled.

What’s wrong? she asked.

Nothing, why?

You look guilty. Did you do something?

Uh, no. I just have to poop, I think.

Oh, ok, let me get you on the toilet, she said, and put down the cups and the bag. She crossed the room, lifted him out of his chair, and carried him to the bathroom. She grunted when she put him down.

You’re getting too big for me to carry, she said. Marko knew she was trying to make him feel better. Even with the growth hormones he’d been taking, he hadn’t gained much weight. While the hormones had caused him finally to start puberty, and while his legs and arms seemed somewhat longer, he was still only 65 pounds.

On the toilet, he helped her pull his pants down and remove his diaper and he was embarrassed to see an erection there, between his legs. Where had that come from? He felt his face heat up and he started stuttering.

It’s okay, it’s fine, she said. It happens, no big deal.

But it was too late. Marko was crying and covering his penis. The feeling it produced in him was unbearable and insatiable.

Honey, why are you sad?

But Marko wasn’t sad. Whatever he was, he didn’t understand, and it was overwhelming enough to make him have to cry. His mother said nothing more. She looked at the wall over his head and bounced him on the toilet seat, waiting for poop to come out.

4. December 13, 2014: Cambridge, MA

Kalina sat in the