The teacher said, “Hitting yourself is bad enough, Marko; I can’t always stop you from doing that. But I won’t let you hit the other children.” Marko was terribly confused. Had he hit someone? He wanted to ask but he couldn’t get his mouth to open or his voice to work.
“Marko,” the principal said, “why did you hit Amy?”
Marko was stunned. He looked at his hands, then back up at the principal, and then at his teacher. The two men were waiting for him to answer. When Marko tried to speak, he laughed. He didn’t mean to laugh, and nothing was funny, but he laughed anyway. Marko could see it was the wrong thing to do—the teacher didn’t look pleased at all—but he couldn’t stop laughing once he’d started.
“Call his parents,” the principal said and slammed his pen down on his desk. Marko laughed harder. He tried to stop but couldn’t. He covered his face with his hands to stifle the sound. He felt himself being wheeled out again and he looked through his fingers. The teacher parked him at the front of the office and walked away to talk to the man at the desk, the school secretary. Marko had been in the office before, the time he’d written with permanent marker on the teacher’s desk. He’d done it because one of the other boys in class, Ryan, dared him to. He’d had no choice. The teacher had asked Marko why he did it. Marko looked at Ryan, who was giving him a warning look. Marko had started laughing that time, too, and he went to the office where they called his parents. They were calling his parents again.
10. December 17, 2015: Cambridge, MA
Marko woke the next morning feeling majorly hungry. It was feeling number four and it was flat, square, and nearly black. His belly felt inside out. He even lifted up his shirt and looked at it to see if it looked different, but it didn’t. It gurgled and ached. He placed his hand wide across it and lay back. Why was he so hungry? Then he remembered: he had refused dinner the night before. His mom had been on the phone talking from about five minutes after they got in the door all the way through dinnertime. She didn’t even talk to Marko at all. She just talked about him to other people. Marko was so used to hearing her talk to doctors on the phone about his medical issues that he’d learned to tune it out. He played a game of checkers by himself, but he couldn’t really play because checkers needs two players. He moved the chips around the board and then stacked them, red on black on red on black, into a tall tower that, in the end, he tumbled with a touch of a finger.
At school one time, he and another boy had set up an elaborate trail of dominos. The trail went in loops, around objects on the table, up over a book and back down again, ending at the edge of the table. When they pushed over the first domino together, it seemed like the dominos were falling one after another for the longest time. He watched each and every domino fall, the cause and effect of one domino bumping into another, knocking it over to bump into the next. When the last domino fell from the table and clattered onto the floor, he looked over the remains. Overlapping dominos lay in the same pattern, roughly, as the boys had arranged them.
While looking at the fallen dominos, he’d felt something he couldn’t quite name. He couldn’t decide if it was happy or sad (seven and three), triumphant or defeated (twenty-four and thirty-two). It was the same feeling he felt now tumbling the tower of perfectly stacked checkers. There was a satisfaction to it (sixty-seven), but also a little regret (seventeen). Altogether, he decided it was a pleasant feeling that he would like to reproduce at key moments—moments like this one where he felt lonely (eleven) and sad (three). The satisfaction-regret feeling somehow soothed the powerful and large loneliness that held the dark body.
While she talked on the phone, his mom cooked. It was all boring food: mung beans, brown rice, vegetables, salad. He’d rather eat some cheese puffs and pizza, which he got sometimes at his grandma’s apartment. His grandma always told him not to tell his mom that she let him eat that stuff, so he never did. Until that evening, at least; now he decided that he would tell her, because he was mad. When she finally hung up the phone and called to him, she had the table set already.
“Come and eat, sweetie,” she said. He didn’t move.
“Marko come on, it’s time for dinner,” she said, her voice a little louder and harder-edged.
“I hate that food. Grandma lets me eat cheese puffs and pizza.” Silence followed. He stretched up from his position on the floor to see her in the kitchen or dining room. There was a large, square, glassless window in the wall between the living room and kitchen and also between the kitchen and dining room, so that he could see all the way across the apartment. He couldn’t see her. It seemed like a long silence. Just about when Marko was going to apologize and drag himself into the dining room, she sighed loudly.
“Fine, you’re not eating then,” she said. Marko was shocked. He didn’t know what to say. He felt a large lump of sad and mad and frustrated accumulate right in the middle of his chest. It got so big that it made his eyes water. He saw her cross into the kitchen with the food. He heard a loud bang and thump. The faucet turned on. The refrigerator opened, then closed. Something went in the trash. Then the faucet went off and Marko’s mom walked past him to her room, where she closed the door behind her.
Marko burst into sobs. He had to, the lump was that big and pressed so hard on the place inside him where sadness lived. It pressed out the crying that was always there, not too far below the surface. When the lump came, he didn’t have the strength to hold down the crying. Even when the lump wasn’t there, he sometimes tired of holding it down and had to have a good, long cry just to let it out.
A few minutes passed and his mom came back. She picked him up without saying anything. He swatted at her and screamed, still crying. She held her head back away from him and carried him into the bathroom. She pulled his clothes off and set him on the toilet. She filled the tub. She put him in the warm water up to his chest, settled him in his bath chair. She scooped water with her hands up over his back and shoulders. She wet his hair. She shampooed him, gently massaging his head.
Marko’s crying slowed and then subsided. Even though she didn’t say anything to him, her touch was gentle and loving. When his mom handled him, held him, washed him, touched him in any way, he could feel a powerful love and a deep kindness in her hands. It was more real than her words. Marko didn’t look at her through the whole process. She didn’t speak to him. At one point, she started humming and mumbling one of her chants.
After the bath, she catheterized him.
“Hold this, please,” she said, handing him the bag that filled with his pee. He took it and held it and looked away while she threaded the tube into the hole at the tip of his penis. He didn’t like to watch. When he watched, the numbers moved too fast.
Looking at the floor of the hallway outside the bathroom door, the numbers in Marko’s head moved more slowly. He knew when she was done, even before he felt the increasing weight of the bag in his hand.
After his bladder was empty, Marko’s mom put a new diaper on him and helped him into his pajamas and then lay him in bed. She placed the book he’d been reading (the Kundera book) on his bed before she walked out. Marko tried to read but couldn’t concentrate. He read just the parts his mom had underlined or starred. Eventually, he fell asleep.
He lay there the next morning hungry as could be. He checked the time and saw that it was way too early to wake his mom: 4:30 a.m. He would get something to eat himself. Marko slid himself to the floor and crossed the room to his chair. After a few attempts to pull himself up, he realized it would be easier to get into his chair from his bed: he could slide from his bed to the seat. He unlocked the wheels of his chair and pushed it up against the bed. Then he tried to get back up into bed. He pulled at the comforter, but it only slid off the bed. He couldn’t lift his arms high enough to get the necessary leverage.
Marko gathered the comforter underneath him in hopes that it would lift him closer to his bed or the chair. He was able to get his arms onto the bed, but there was nothing secure to hold for pulling, only the sheet, which would slide off too. Conceding that it wouldn’t work, Marko abandoned his chair