At the time, I ignored the “other possibilities.” I hung onto the idea of severe ADHD and stuck tight to it, right up until the day the developmentalist said the word “autism” instead. But even then, he hedged and said that Chase, at six, didn’t quite fit. So he said it was “atypical,” as if that word would mediate meaning in such a way that the entire picture would suddenly be clear. But the thing about Chase, whatever that thing was, didn’t quite fit any one diagnosis, not exactly, so his diagnoses came to seem like something that was about him but not truly of him, a suit of clothes he’d borrowed from someone else.
I had a kind of label envy. I wanted to know what was wrong with Chase so I could fix it. I knew that other parents got what seemed to me then to be simple answers: Your child has Down syndrome. Your child has cerebral palsy. Your child has sustained a massive head injury in a wreck. Your child has cancer. But certainty about what was wrong with Chase never came. When he was born, no one named his disability on his birth record. He didn’t take sick and emerge a different kid when the sickness was over, so different that I’d been given a sheet of paper with a syndrome labeled at the top and bulleted points describing who my child was going to be, now that he was no longer who he was.
Instead, there was suggestion, supposition, hypothesis, and a very slowly growing sense that when something went wrong for Chase, whatever it was would be complicated and it would inexorably lead to another first moment, and then another, and another. A geneticist described it to me as “stair-stepping,” where original sets of skills and behaviors plateau for a while, then drop precipitously to the next level, where they again plateau for a while before dropping again. Each level seemed to bring the opportunity for more words to pile up. But the more words there were, the less meaning any of them had, and the more they depended on each other for whatever nuances of meaning they did have. If this troubled me more than it might have troubled the average person, it was because words mattered to me. Even as I knew that meanings were provisional, contextual, historically situated, unstable, I seemed to hold to the idea that the classifications of diagnosis had somehow escaped the very provisional nature of meaning that I accepted everywhere else. I simultaneously held to the idea that nineteenth-century claims about hysteria, for example, could provide us with a kind of quaint taxonomy of nineteenth-century beliefs and second, that there was stability in the diagnostic words that twentieth-century doctors offered me. I believed in the certainty and absolutism of these words because I believed that if we could name this thing, we could cure it. I could save Chase.
IN THE MORNING, Chase was pale and quiet but he dressed for school and took his meds. It had gotten cooler overnight so I told him to wear his winter coat. He put it on and pulled the hood up over his head and then went out and sat in the car. I fixed Haley’s lunch and checked her homework. We drove to school and listened to U2. School was close enough that the kids could have walked but we had gotten in the habit of a morning drive when Chase hurt his neck and we’d never gotten out of it. From there, I drove to campus. When I got to my office, I called Dr. LJ, who was working at a hospital in Raleigh that day. I left a message telling him I needed to talk with him about Chase and it was urgent. I sent him an e-mail that said the same. And then I tried to do my work.
Even though I had plenty of evidence that something was going on with Chase, the school nurse’s voice on the phone surprised me.
“I just wanted to let you know that we’re having a problem with Chase,” she said. “He won’t leave Ms. Plummer’s room. He tells us he’s going to be killed by an executioner.”
She must have heard my silence as resistance for she plunged on in a brisk upbeat voice. I recognized the approach.
“I see many things that worry me,” she said. “He’s very afraid. He needs treatment. He can’t come back until he’s had it. We think it would be best if you came right away.”
“I called his doctor this morning,” I said. “But he’s not going to be back in town until tonight.”
The nurse paused. Then she said, “Do you think you can get him to go to the hospital?”
“I don’t know,” I said.
“What if I go with you?” she said. “If you can get him there, I’ll meet you there, and between the two of us, we should be able to get him in.”
I hesitated. “I wish I could talk to his doctor before I go to the hospital with Chase,” I said.
“You understand that the school won’t accept him back as student until he’s been treated?” she replied. “We can’t have him here when he’s like this. It’s not safe for him and it’s not safe for us. I don’t think it’s safe for you and your daughter to have him at home, either. The best thing to do is to take him to the hospital. I’ll meet you at the ER. If there are any questions at all, I’ll be there to help.”
I PARKED IN FRONT of the school in the kiss-and-go lane and left my hazards flashing. I walked down a white-tiled hallway bordered in aqua and then turned right onto a white-tiled hallway bordered in burgundy and looked through the window in the door of room 713 and found Chase sitting at a desk in Carrie Plummer’s classroom. He wore his coat with the hood pulled up over his head and didn’t look at us. Carrie sat on the edge of her desk, facing him, and Diane, the nurse, stood beside him.
“Here’s Mom now,” Diane said. Her voice was bright and firm. “Are you ready to go, Mom?”
“All set,” I said. I looked at Chase. “Hey Chase. Hey buddy. We’re going to go to the hospital. Do you understand?”
He didn’t speak but turned ever so slightly away from me.
I walked over to him and put my hand on his back and began to rub his coat between his shoulder blades and he didn’t flinch or pull away nor did he lean toward me for solace. He sat as rigid as a board with his hood pulled up over his head and his face expressionless and white.
“Don’t worry,” I said. “Sometimes your medication stops working and you need to have it fixed. There are doctors at the hospital who can help us do that.”
He didn’t reply.
“Chase,” I said. I thought about the things I said even as I said them, and wondered for whom I was speaking. Chase? Myself? But I kept going. “Come with me now,” I said. “It’s going to be okay.”
“I don’t want any more surgery,” said Chase. He looked at me and then looked away.
“Don’t worry,” I said. “You won’t have any more surgery. They’re just going to fix your medicine. That’s going to make everything okay.” I looked up at Carrie. She’d been his teacher for two years. “Do you have his backpack?”
“It’s right here,” she said and I realized it had been sitting on the table in front of her the whole time, Chase’s black backpack that he’d picked out himself so he could seem cool. “Now listen, Chase,” she said. “You get better quick and come back to school soon, all right? We’ll miss you until you get back.”
Diane said, “We can all drive over in my car or I can meet you there.”
“It could end up being very late before we get out of there,” I said. “Let me take my car and meet you.”
“What about your daughter?”
“She’s going home on the bus with her best friend. I called her mother at work and they’ll keep her until I get back.”
I carried Chase’s backpack and Diane walked beside us along the long white-tiled hallway and then out through the front door of the school. It was an overcast day two weeks before Chase’s fifteenth birthday. Winter was starting to make its presence known. I opened the passenger side and Chase got in and I closed the door and Diane stood casually by Chase’s door with her right hand on the handle and her left hand on the glass, leaning into the car, leaning toward Chase, as if he might at any moment bolt and run, while I walked around to the driver’s side and opened the rear passenger door and tossed his backpack on the backseat and then closed that door and opened the driver’s-side door and got in. I checked to make sure Chase was buckled up once I got in and then reached acro
ss him to lock his door. Diane walked around to my side of the car and I rolled down my window and told Diane we’d see her over there.
“I’m right behind you,” she said. I watched her walk toward the staff parking lot in my rearview mirror. Chase sat beside me, his hood pulled up, his face still and white, his eyes big and wet and full of life and ideas he couldn’t express.
I stopped at the intersection of the school driveway and Old Fayetteville Road and then turned and drove east to come up into town. Just as I always did, I pointed out Chase Avenue as we turned onto Manning Drive but Chase rode without speaking and stared out the window. I found a spot in the ER parking lot and looked around for Diane’s car.
“Let’s wait for Nurse Kiddle,” I said.
Chase didn’t say anything but furtively stepped behind one of the concrete pillars in front of the ER entrance. He retreated further into his coat and stared wild-eyed at the cars passing in front of the hospital. When a white van drove by, he began to say something about FBI profilers and the death penalty.
“Let’s go inside,” I said. “It’ll be better to wait inside.”
We were sent to the pediatric waiting room, where a small girl lay in her mother’s arms and a man watched television and two boys spun bright-colored spools and cogs along a wire track. We sat by the windows and Chase watched and watched the street that ran along the hospital in front of the emergency room. A nurse called Chase’s name and we followed her back to a small examination room.
“Let’s have your coat,” she said.
Chase hunched into it more deeply and pushed his hands into the pockets and stared darkly at her.
“How do you expect me to take your height and weight with that coat on?” she said and smiled at him. “Do you want me to get in trouble for not doing my job?”
“Do you need help?” I said. “I can get the zipper for you.”
He shook his head and pulled the zipper down and pulled his coat off. He held it in front of him like a blanket.
The nurse took Chase’s temperature, weighed him, and measured his height. Then she led us across the hall to a dimly lit room where a striped cotton curtain separated two gurneys and a glass window faced the corridor. Diane waited for us in the doorway. She was peeling her mittens off as we came in.
“Did it go okay?” she said.
The nurse took Chase’s elbow and propelled him toward the gurney closest to the door. “Just have a seat,” she said. “The doctor will be in shortly.”
“No trouble on the road?” Diane said.
“It was fine,” I said.
“That’s a relief, isn’t it?” she said.
The ER pediatrician came in. She recognized Chase from his earlier trips to the ER. She listened carefully while I described the reason for our visit that day. She made notes on the chart. She asked Chase questions about how he was feeling and what was troubling him. Chase’s responses seemed to satisfy her. Just before she left she looked at me and said, “Someone from upstairs will be down shortly.” The ER nurse came in and asked if Chase wanted to watch TV. He didn’t reply. He stared at the wall and didn’t move. She left. Chase didn’t say anything for a long time. Then he looked up and said, “I don’t want any more surgery.”
“Don’t worry,” I said. “You might have to stay overnight for a day or two but nobody’s going to do any surgery.”
“No,” he said. “I’m not staying. I don’t like hospitals.”
“Chase,” I said. “It’ll be okay.”
“Chase,” said Diane, “when you’re sick, don’t you wish you were better? That’s what the doctors here will do. They’ll make you better and then you can come home and be back at school.”
“It won’t take long,” I said. “You’ll see.”
Chase turned away from me and stared at the wall. Then the psych resident came in with her clipboard. She listened while I described the things that had been happening to Chase. She asked him many questions. He answered very few. Diane described what they had seen at school. I talked about the way in which now was different than before, but of course my statements were completely subjective, based on that most imperfect witness, bare memory, and on the shocked sense of change I’d been living with since the day we went to the picnic at Cedar Rock park.
She wrote a number of things on her clipboard and then said to me, “Wait here. I’d like to admit him but I’ll have to see if there’s a bed available.”
While we waited, Diane told me that before she was a school nurse, she’d been a pediatric psych nurse. When she saw Chase in the classroom that day, she felt she knew exactly what she was seeing. That was why she wanted to go with us to the hospital. She said she’d seen too many cases where ERs turned acute pediatric psych patients away. This would be an unacceptable outcome for Chase. So she intended to stay with us until she knew for certain he would be admitted. She was prepared to argue his case.
But it wasn’t necessary. We waited and I bought dinner for Chase at the Wendy’s on the second floor and the nurse came back and gave Chase his seizure meds and we waited some more. Around eight, the nurse came back and told us they were ready for us upstairs. I don’t remember how we got to the fifth floor. I do remember the nurse buzzed and someone inside unlocked the door and we were let in. I remember sitting in the unit’s intake room and answering questions posed by a nurse. The room had glass walls and patients already on the unit came by, especially two teenaged girls, who wanted to get a look at the new guy. One came alone and then came back a few minutes later with another girl. Then the two walked up and down and looked in at Chase. If he saw them, he didn’t let on. The nurse flipped through her papers and asked me to sign at appropriate places. I described Chase’s needs. The nurse looked at me funny but kept writing things down. By nine, they’d shown Chase his bed in a room by himself and I told him not to worry. The doctors would help him in the morning and I’d be back to see him during the day. The nurse told me to come back for a meeting with the care team at eleven. I tucked Chase in and kissed him goodnight.
THREE
Before Chase, before Zip, I knew about as much about disability as anyone who has never spent much time around it knows. I saw it as something forever at a distance, a thing that happened to others, a thing apart from me, a thing with so little purchase on my life that my considerations of it were, to be generous, completely inconsequential.
When I was Chase’s age, I lived in a town so close to the Hudson River that my boyfriends and I walked in a state park that was little more than a wide dirt road along the river’s rocky banks and a swath of raggedy cliffs over our heads. In the fall, the trees turned yellow and stood out sharply against the low purple sky, and the cliffs looked wet even before it rained.
One cold spring, a girl who was a year ahead of me in school skipped class and took some acid or did some mushrooms or otherwise altered her consciousness and fell or flew from the lip of stone that stood between land and thin air, the steely river spread out five hundred feet below. She landed halfway down on a granite ledge and had to be airlifted out in a seven-hour rescue operation that involved a helicopter. When she finally came back to school the next year, she was in a wheelchair and couldn’t speak clearly. You’d catch bits of what she said in the hallway between classes, when she was trying to get through to the aide who pushed her chair. Her voice was loud and flat and broken. She carried her books in a dirty white canvas sack hooked to the back of her wheelchair and what I remember is the dirty white sack and the way she couldn’t talk, as if each of those things had become who she was, as if she’d been erased by the fall and replaced with an object and a voice that didn’t sound like she even knew how to speak English. I looked at her and away, in just the way I assume many others did, curious, repelled, unwilling to be friends. I carried in me the unspoken idea that in her disability she had somehow ceased to be human, and now, by virtue of her damage, was a human-shaped thing in a rolling chair at which one might steal furtive glances.
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sp; My other experiences with disability did little to ameliorate this view of the disabled as beings among us but not of us, as if each of their particular challenges left them a little bit less human. This boiled down to a shameful (but I think common) idea: I could not see myself in them and so saw nothing at all. So perfectly and utterly are the disabled dispossessed that this notion of their separateness is, for many of us, beyond contemplation. It just never occurs to us to think of them as people like us at all.
I MET ZIP when I was seventeen, in the very first months of being on my own in college, and I met him as if the world had opened up for this to happen. Some things from that time stay with me: how much of what I did every day was a mystery to me, how much better prepared for being in college everyone else seemed to be. I hesitated in the dining hall and I hesitated in class. I wrote papers and I went to the library. Everyone else went to the Quad to play Frisbee and smoke pot while the boys in Simpson Hall blasted “Sugar Magnolia.”
I loved the college and I loved the idea of myself as part of this college but I felt as if I hungered on the edges of things. Finally, my exasperated older sister, who’d gone off to school the year before and seemed expert in these matters, told me that I ought to do something, join a club, maybe work at the college radio station, for god’s sake, get out of my room, and meet people.
So I found myself early one morning toward the middle of fall term sitting on a bus with thirty other students who wanted to get their FCC licenses so we could go on air at the college radio station. The college was perched at the northern end of Seneca Lake, the longest and deepest of the Finger Lakes, and a two-hour road trip from Buffalo, where we would take the test. The first minutes on the bus were cold while we waited for the station manager to show up and for the engine to warm and I sat next to a boy who would go on to become a successful investment banker. He tried to talk with me but I didn’t like the way he incessantly nodded as he spoke, as if his head was like the head of one of those bobble-head dogs you used to see in the back windows of people’s cars. Finally, I held my book up and said, “I have to study.” He seemed relieved and turned his attention to a book on the Spanish Armada. We both stared at our laps for a few minutes, our books open but unread, until someone shouted, “Here he comes.” I looked up and down the aisle and out the bus’s windshield, where I could see Zip making his way across the gray parking lot.
The Boy Who Loved Tornadoes Page 4