A Little Life

  Caleb still hasn’t said anything, and now he drags him to the sofa, the only sounds Caleb’s steady breaths and his frantic gulps. He pushes his face into the cushions and holds his head down with one hand, while with the other, he begins pulling off his clothes. He begins to panic, then, and struggle, but Caleb presses one arm against the back of his neck, which paralyzes him, and he is unable to move; he can feel himself become exposed to the air piece by piece—his back, his arms, the backs of his legs—and when everything’s been removed, Caleb yanks him to his feet again and pushes him away, but he falls, and lands on his back.

  “Get up,” says Caleb. “Right now.”

  He does; his nose is discharging something, blood or mucus, that is making it difficult for him to breathe. He stands; he has never felt more naked, more exposed in his life. When he was a child, and things were happening to him, he used to be able to leave his body, to go somewhere else. He would pretend he was something inanimate—a curtain rod, a ceiling fan—a dispassionate, unfeeling witness to the scene occurring beneath him. He would watch himself and feel nothing: not pity, not anger, nothing. But now, although he tries, he finds he cannot remove himself. He is in this apartment, his apartment, standing before a man who detests him, and he knows this is the beginning, not the end, of a long night, one he has no choice but to wait through and endure. He will not be able to control this night, he will not be able to stop it.

  “My god,” Caleb says, after looking at him for a few long moments; it is the first time he has ever seen him wholly naked. “My god, you really are deformed. You really are.”

  For some reason, it is this, this pronouncement, that brings them both back to themselves, and he finds himself, for the first time in decades, crying. “Please,” he says. “Please, Caleb, I’m sorry.” But Caleb has already grabbed him by the back of his neck and is hurrying him, half dragging him, toward the front door. Into the elevator they go, and down the flights, and then he is being dragged out of the elevator and marched down the hallway toward the lobby. By now he is hysterical, pleading with Caleb, asking him again and again what he’s doing, what he’s going to do to him. At the front door, Caleb lifts him, and for a moment his face is fitted into the tiny dirty glass window that looks out onto Greene Street, and then Caleb is opening the door and he is being pushed out, naked, into the street.

  “No!” he shouts, half inside, half outside. “Caleb, please!” He is pulled between a crazed hope and a desperate fear that someone will walk by. But it is raining too hard; no one will walk by. The rain drums a wild pattern on his face.

  “Beg me,” says Caleb, raising his voice over the rain, and he does, pleading with him. “Beg me to stay,” Caleb demands. “Apologize to me,” and he does, again and again, his mouth filling with his own blood, his own tears.

  Finally he is brought inside, and is dragged back to the elevator, where Caleb says things to him, and he apologizes and apologizes, repeating Caleb’s words back to him as he instructs: I’m repulsive. I’m disgusting. I’m worthless. I’m sorry, I’m sorry.

  In the apartment, Caleb lets go of his neck, and he falls, his legs unsteady beneath him, and Caleb kicks him in the stomach so hard that he vomits, and then again in his back, and he slides over Malcolm’s lovely, clean floors and into the vomit. His beautiful apartment, he thinks, where he has always been safe. This is happening to him in his beautiful apartment, surrounded by his beautiful things, things that have been given to him in friendship, things that he has bought with money he has earned. His beautiful apartment, with its doors that lock, where he was meant to be protected from broken elevators and the degradation of pulling himself upstairs on his arms, where he was meant to always feel human and whole.

  Then he is being lifted again, and moved, but it is difficult to see where he’s being taken: one eye is already swollen shut, and the other is blurry. His vision keeps blinking in and out.

  But then he realizes that Caleb is taking him to the door that leads to the emergency stairs. It is the one element of the old loft that Malcolm kept: both because he had to and because he liked how bluntly utilitarian it was, how unapologetically ugly. Now Caleb unslides the bolt, and he finds himself standing at the top of the dark, steep staircase. “So descent-into-hell looking,” he remembers Richard saying. One side of him is gluey with vomit; he can feel other liquids—he cannot think about what they are—moving down other parts of him: his face, his neck, his thighs.

  He is whimpering from pain and fear, clutching the edge of the doorframe, when he hears, rather than sees, Caleb move back and run at him, and then his foot is kicking him in his back, and he is flying into the black of the staircase.

  As he soars, he thinks, suddenly, of Dr. Kashen. Or not of Dr. Kashen, necessarily, but the question he had asked him when he was applying to be his advisee: What’s your favorite axiom? (The nerd pickup line, CM had once called it.)

  “The axiom of equality,” he’d said, and Kashen had nodded, approvingly. “That’s a good one,” he’d said.

  The axiom of equality states that x always equals x: it assumes that if you have a conceptual thing named x, that it must always be equivalent to itself, that it has a uniqueness about it, that it is in possession of something so irreducible that we must assume it is absolutely, unchangeably equivalent to itself for all time, that its very elementalness can never be altered. But it is impossible to prove. Always, absolutes, nevers: these are the words, as much as numbers, that make up the world of mathematics. Not everyone liked the axiom of equality—Dr. Li had once called it coy and twee, a fan dance of an axiom—but he had always appreciated how elusive it was, how the beauty of the equation itself would always be frustrated by the attempts to prove it. It was the kind of axiom that could drive you mad, that could consume you, that could easily become an entire life.

  But now he knows for certain how true the axiom is, because he himself—his very life—has proven it. The person I was will always be the person I am, he realizes. The context may have changed: he may be in this apartment, and he may have a job that he enjoys and that pays him well, and he may have parents and friends he loves. He may be respected; in court, he may even be feared. But fundamentally, he is the same person, a person who inspires disgust, a person meant to be hated. And in that microsecond that he finds himself suspended in the air, between the ecstasy of being aloft and the anticipation of his landing, which he knows will be terrible, he knows that x will always equal x, no matter what he does, or how many years he moves away from the monastery, from Brother Luke, no matter how much he earns or how hard he tries to forget. It is the last thing he thinks as his shoulder cracks down upon the concrete, and the world, for an instant, jerks blessedly away from beneath him: x = x, he thinks. x = x, x = x.

  2

  WHEN JACOB WAS very small, maybe six months old or so, Liesl came down with pneumonia. Like most healthy people, she was a terrible sick person: grouchy and petulant and, mostly, stunned by the unfamiliar place in which she now found herself. “I don’t get sick,” she kept saying, as if some mistake had been made, as if what had been given her had been meant for someone else.

  Because Jacob was a sickly baby—not in any dramatic way, but he had already had two colds in his short life, and even before I knew what his smile looked like, I knew what his cough sounded like: a surprisingly mature hack—we decided that it would be better if Liesl spent the next few days at Sally’s to rest and get better, and I stayed at home with Jacob.

  I thought myself basically competent with my son, but over the course of the weekend, I must have called my father twenty times to ask him about the various little mysteries that kept presenting themselves, or to confirm with him what I knew I knew but which, in my fluster, I had forgotten: He was making strange noises that sounded like hiccups but were too irregular to actually be hiccups—what were they? His stool was a little runny—was that a sign of anything? He liked to sleep on his stomach, but Liesl said that he should be on his back, and yet I had always h
eard that he’d be perfectly fine on his stomach—would he be? Of course, I could’ve looked all of this up, but I wanted definitive answers, and I wanted to hear them from my father, who had not just the right answers but the right way of delivering them. It comforted me to hear his voice. “Don’t worry,” he said at the end of every call. “You’re doing just fine. You know how to do this.” He made me believe I did.

  After Jacob got sick, I called my father less: I couldn’t bear to talk to him. The questions I now had for him—how would I get through this?; what would I do, afterward?; how could I watch my child die?—were ones I couldn’t even bring myself to ask, and ones I knew would make him cry to try to answer.

  He had just turned four when we noticed that something was wrong. Every morning, Liesl would take him to nursery school, and every afternoon, after my last class, I would pick him up. He had a serious face, and so people thought that he was a more somber kid than he really was: at home, though, he ran around, up and down the staircase, and I ran after him, and when I was lying on the couch reading, he would come flopping down on top of me. Liesl too became playful around him, and sometimes the two of them would run through the house, shrieking and squealing, and it was my favorite noise, my favorite kind of clatter.

  It was October when he began getting tired. I picked him up one day, and all of the other children, all of his friends, were in a jumble, talking and jumping, and then I looked for my son and saw him in a far corner of the room, curled on his mat, sleeping. One of the teachers was sitting near him, and when she saw me, she waved me over. “I think he might be coming down with something,” she said. “He’s been a little listless for the past day or so, and he was so tired after lunch that we just let him sleep.” We loved this school: other schools made the kids try to read, or have lessons, but this school, which was favored by the university’s professors, was what I thought school should be for a four-year-old—all they seemed to do was listen to people reading them books, and make various crafts, and go on field trips to the zoo.

  I had to carry him out to the car, but when we got home, he woke and was fine, and ate the snack I made him, and listened to me read to him before we built the day’s centerpiece together. For his birthday, Sally had gotten him a set of beautiful wooden blocks that were carved into geode-like shapes and could be stacked very high and into all sorts of interesting forms; every day we built a new construction in the center of the table, and when Liesl got home, Jacob would explain to her what we’d been building—a dinosaur, a spaceman’s tower—and Liesl would take a picture of it.

  That night I told Liesl what Jacob’s teacher had said, and the next day, Liesl took him to the doctor, who said he seemed perfectly normal, that nothing seemed out of the ordinary. Still, we watched him over the next few days: Was he more energetic or less? Was he sleeping longer than usual, eating less than usual? We didn’t know. But we were frightened: there is nothing more terrifying than a listless child. The very word seems, now, a euphemism for a terrible fate.

  And then, suddenly, things began to accelerate. We went to my parents’ over Thanksgiving and were having dinner when Jacob began seizing. One moment he was present, and the next he was rigid, his body becoming a plank, sliding off the chair and beneath the table, his eyeballs rolling upward, his throat making a strange, hollow clicking noise. It lasted only ten seconds or so, but it was awful, so awful I can still hear that horrible clicking noise, still see the horrible stillness of his head, his legs marching back and forth in the air.

  My father ran and called a friend of his at New York Presbyterian and we rushed there, and Jacob was admitted, and the four of us stayed in his room overnight—my father and Adele lying on their coats on the floor, Liesl and I sitting on either side of the bed, unable to look at each other.

  Once he had stabilized, we went home, where Liesl had called Jacob’s pediatrician, another med-school classmate of hers, to make appointments with the best neurologist, the best geneticist, the best immunologist—we didn’t know what it was, but whatever it was, she wanted to make sure Jacob had the best. And then began the months of going from one doctor to the next, of having Jacob’s blood drawn and brain scanned and reflexes tested and eyes peered into and hearing examined. The whole process was so invasive, so frustrating—I had never known there were so many ways to say “I don’t know” until I met these doctors—and at times I would think of how difficult, how impossible it must be for parents who didn’t have the connections we did, who didn’t have Liesl’s scientific literacy and knowledge. But that literacy didn’t make it easier to see Jacob cry when he was pricked with needles, so many times that one vein, the one in his left arm, began to collapse, and all those connections didn’t prevent him from getting sicker and sicker, from seizing more and more, and he would shake and froth, and emit a growl, something primal and frightening and far too low-pitched for a four-year-old, as his head knocked from side to side and his hands gnarled themselves.

  By the time we had our diagnosis—an extremely rare neurodegenerative disease called Nishihara syndrome, one so rare that it wasn’t even included on batteries of genetic tests—he was almost blind. That was February. By June, when he turned five, he rarely spoke. By August, we didn’t think he could hear any longer.

  He seized more and more. We tried one drug after the next; we tried them in combinations. Liesl had a friend who was a neurologist who told us about a new drug that hadn’t been approved in the States yet but was available in Canada; that Friday, Liesl and Sally drove up to Montreal and back, all in twelve hours. For a while the drug worked, although it gave him a terrible rash, and whenever we touched his skin he would open his mouth and scream, although no sound came out, and tears would run out of his eyes. “I’m sorry, buddy,” I would plead with him, even though I knew he couldn’t hear me, “I’m sorry, I’m sorry.”

  I could barely concentrate at work. I was only teaching part-time that year; it was my second year at the university, my third semester. I would walk through campus and overhear conversations—someone talking about splitting up with her boyfriend, someone talking about a bad grade he got on a test, someone talking about his sprained ankle—and would feel rage. You stupid, petty, selfish, self-absorbed people, I wanted to say. You hateful people, I hate you. Your problems aren’t problems. My son is dying. At times my loathing was so profound I would get sick. Laurence was teaching at the university then as well, and he would pick up my classes when I had to take Jacob to the hospital. We had a home health-care worker, but we took him to every appointment so we could keep track of how fast he was leaving us. In September, his doctor looked at us after he had examined him. “Not long now,” he said, and he was very gentle, and that was the worst part.

  Laurence came over every Wednesday and Saturday night; Gillian came every Tuesday and Thursday; Sally came every Monday and Sunday; another friend of Liesl’s, Nathan, came every Friday. When they were there, they would cook or clean, and Liesl and I would sit with Jacob and talk to him. He had stopped growing sometime in the last year, and his arms and legs had gone soft from lack of use: they were floppy, boneless even, and you had to make sure that when you held him, you held his limbs close to you, or they would simply dangle off of him and he would look dead. He had stopped opening his eyes at all in early September, although sometimes they would leak fluids: tears, or a clumpy, yellowish mucus. Only his face remained plump, and that was because he was on such massive doses of steroids. One drug or another had left him with an eczematic rash on his cheeks, candied-red and sandpapery, that was always hot and rough to the touch.

  My father and Adele moved in with us in mid-September, and I couldn’t look at him. I knew he knew what it was like to see children dying; I knew how much it hurt him that it was my child. I felt as if I had failed: I felt that I was being punished for not wanting Jacob more passionately when he had been given to us. I felt that if I had been less ambivalent about having children, this never would have happened; I felt that I was being remind
ed of how foolish and stupid I’d been to not recognize what a gift I’d been given, a gift that so many people yearned for and yet I had been willing to send back. I was ashamed—I would never be the father my father was, and I hated that he was here witnessing my failings.

  Before Jacob had been born, I had asked my father one night if he had any words of wisdom for me. I had been joking, but he took it seriously, as he took all questions I asked him. “Hmm,” he said. “Well, the hardest thing about being a parent is recalibration. The better you are at it, the better you will be.”

  At the time, I had pretty much ignored this advice, but as Jacob got sicker and sicker, I thought of it more and more frequently, and realized how correct he was. We all say we want our kids to be happy, only happy, and healthy, but we don’t want that. We want them to be like we are, or better than we are. We as humans are very unimaginative in that sense. We aren’t equipped for the possibility that they might be worse. But I guess that would be asking too much. It must be an evolutionary stopgap—if we were all so specifically, vividly aware of what might go horribly wrong, we would none of us have children at all.

  When we first realized that Jacob was sick, that there was something wrong with him, we both tried very hard to recalibrate, and quickly. We had never said that we wanted him to go to college, for example; we simply assumed he would, and to graduate school as well, because we both had. But that first night we spent in the hospital, after his first seizure, Liesl, who was always a planner, who had a brilliant ability to see five steps, ten steps, ahead, said, “No matter what this is, he can still live a long and healthy life, you know. There are great schools we can send him to. There are places where he can be taught to be independent.” I had snapped at her: I had accused her of writing him off so quickly, so easily. Later, I felt ashamed about this. Later, I admired her: I admired how rapidly, how fluidly, she was adjusting to the fact that the child she thought she would have was not the child she did have. I admired how she knew, well before I did, that the point of a child is not what you hope he will accomplish in your name but the pleasure that he will bring you, whatever form it comes in, even if it is a form that is barely recognizable as pleasure at all—and, more important, the pleasure you will be privileged to bring him. For the rest of Jacob’s life, I lagged one step behind Liesl: I kept dreaming he would get better, that he would return to what he had been; she, however, thought only about the life he could have given the current realities of his situation. Maybe he could go to a special school. Okay, he couldn’t go to school at all, but maybe he could be in a playgroup. Okay, he wouldn’t be able to be in a playgroup, but maybe he would be able to live a long life anyway. Okay, he wouldn’t live a long life, but maybe he could live a short happy life. Okay, he couldn’t live a short happy life, but maybe he could live a short life with dignity: we could give him that, and she would hope for nothing else for him.