ELEVEN
When Haley was two, the college closed the writing and rhetoric program where I’d been teaching and we moved to the Midwest. The word Midwest sounded to me like “failed test.” I hadn’t published enough and made enough of a name for myself to get a Big Job at a Big School so I took a job at a small liberal arts college in the middle of nowhere.
Our only other choice would have been for me to quit teaching and for us to live off of Zip’s earnings at the music store. But he had no health insurance, no benefits of any kind, and I knew we could not afford Chase’s medical bills on Zip’s earnings alone.
So I took the job at the college and hoped for the best. I read The Berenstain Bears’ Moving Day to Haley and Chase, over and over again, pointing out the new house, and the new rooms each child would have, and the way that the movers would move our furniture and our things so that when we got to the new house, everything would be there, waiting for us.
We left the Finger Lakes early one morning in August and headed west, toward Canada. The plan was to stop and eat lunch and show the kids Niagara Falls. The plan was to make this move a pleasure trip. I cried as we left town and then stopped, so Chase and Haley would not see. We made the Rainbow Bridge before noon and parked near Horseshoe Falls. We allowed ourselves to be carried to the lookout in front of the falls by a little shuttle bus, just another family among the tourists, and we took pictures of each other with crashing spume behind us and ate overpriced hamburgers at a stand across the street from the place where the Niagara River stops being a river and hurtles over cliffs to become a waterfall. It was gusty near the falls and I watched the kids eat and watched the stiff breeze ripple along the edge of the bright orange canvas awning that shuddered gaily in the wind.
After lunch, we crossed the flatlands of Canada near Hamilton, and in the late afternoon passed back into the States on a high bridge that took us into the air and then down. A huge sign hung like a banner across the roadway, welcoming us to the state. Chase climbed up on his knees and looked out the window so that he could get a better view of the boats passing far below, the water glittering under the afternoon sun, long shivering V’s of silver behind the boats on the white-capped water.
“Chase,” said Zip. “Sit down, Chase.”
He grinned at us and turned around and sat down. “They have boats here, Mom,” he said. “Can we go on a boat?”
“Maybe someday,” I said. “Look. Do you see the lighthouse?”
“When can we go on a boat?” he said.
“Maybe after we’re all moved in.”
“And then we’ll go on a boat, right? Right? Right?”
“Maybe,” I said. “We’ll see.”
By nightfall, which comes late in the northern part of the Midwest in early August, we were headed north again. Chase and Haley slept in the back. Haley’s head lolled against the side of her car seat; she rested her hands on the soft furry pelt of her stuffed giraffe. Chase’s chin dropped forward onto his chest and every so often he would jerk upright but he did not wake up. Zip leaned forward in the dark, trying to find something on the radio, and I listened while he punched buttons up and down the dial. Nothing. There were very few cars on the highway and the only lights were those that appeared on farms, where some enterprising dairyman had wired a single bright light to the peak of his barn, or had hung a security light over the farmyard between dark house and dark shed. Zip fiddled but all we heard was static, or the occasional weak voice of a late-night preacher, his voice calling to the faithful, a ghost of the airwaves out on the great flat plains in the middle of the country.
At ten, we drove into town past the oil refinery, the twin torches blazing in the darkness. Downtown was empty but there were fireworks over the Masonic Home, blooming flowers of sparks and screaming rockets that briefly lit up the sky and died. We found our new house and pulled into the driveway, our headlights sweeping across the previous owner’s garden, the tomatoes and peppers and beans and pumpkins poking through a crazed jungle of tall, twisty weeds.
Inside, the house smelled like gas. We walked from room to room to open the windows and went to the neighbor’s to call the gas company. I fixed sandwiches and chips and juice for the kids and let them eat their suppers tucked into the nest of blankets we made for them on the living room floor.
Just before we’d left the Finger Lakes, I’d met with Chase’s pediatrician and asked him to tell me what was wrong with Chase. I had seen the MRI report, where the radiologist had written: 5-year-old male with pervasive developmental disorder. It was the first time I’d seen those words when someone was talking about Chase and I’d asked Chase’s doctor what they meant, but all he told me was that these were just descriptive words that helped the radiologist know what he was looking for, they were not a diagnosis, no one knew what to call the thing that might be wrong with Chase. In his opinion, I didn’t need to worry about naming the thing. He had a philosophy, he said, of not telling parents the name of the thing that had come to live in their house because, he believed, the parents would focus on the thing and not the child. I found this statement bewildering; the name, it seemed to me, told me what I already knew: that my child was himself and this thing was part of who he was.
I told the pediatrician that I needed to know the words that had been entered into the medical record about Chase before we left town. We would change insurance companies with my new job and I needed to have the same information the insurance companies would have. I needed to know the words they knew.
“Autism,” he said. “Atypical autism. That’s what’s in the record. That’s what’s been coded for the insurance companies.” He suggested that I call a pediatrician in our new town and explore services that might be available for Chase. When I did, I was met with silence on the other end of the phone. Finally, the nurse said, “We don’t have anything like that. We just don’t have families with those needs here.”
It’s easy to say now that we would not have moved to the rural Midwest if we’d known that Chase had an autism diagnosis but I’m not so sure. His pediatrician had done his job well and I didn’t see autism—even an unusual type of autism—when I saw Chase. I just saw Chase, who loved trains and dump trucks and riding his bike and who spun from room to room, who asked questions about everything he saw, the same questions over and over again, and stood on his bed and crowed like a rooster, giggling all the while.
WE COULD AFFORD THE house in the Midwest because the market was depressed and the house needed a lot of work. Chase’s bedroom had a hole in the ceiling, where wires from an old light fixture snaked out from the darkness. The downstairs bedroom and bath were separated by a hole shaped like a doorway cut into the wall that you could step through into the bathroom; the previous owner had rented the upstairs bedrooms and kept the downstairs for himself, padlocking the two rooms so his renters couldn’t get in. You could see a greasy crescent-shaped stain on the wall of the bedroom where he’d rested his scalp against the paint; it took Zip three coasts of Kilz to seal over the mark. The upstairs bath had a hole in the floor where the linoleum just dropped off to floor joists. The toilet had been salvaged; so had the bricks the last owner had laid along one side of the house to make a walkway through the enclosed garden. He’d dropped an old bathtub into the ground to make a pond and Zip spent one fall weekend digging and levering the thing out of the earth because I was afraid that Chase or Haley would fall in and drown. We lifted a half-rotted deer head out of the compost pile. We harvested the garden and then brush-hogged the backyard and raked up the stones and loose sticks and seeded and watered until we had grass where the kids could play. We put up a swing set, just a board on two large wooden tripods from which hung twin swings with a trapeze in between, and Chase and Haley could swing and tip up under the trees and fly back over the grass and tip up under the trees and fly forward, again and again. Forty-foot cedars lined the back of the yard and I planted daffodils and crocuses and snowdrops below their dark branches so that in the spring, we�
�d look out and see flowers across the grass, at the rim of darkness. We painted all of the rooms and pulled the old carpet up. We turned the downstairs bedroom into a study, with shelves that lined one wall, and made a desk by putting a slab of door on top of two file cabinets, so I could have a place to work.
The house held a hidden room in the basement and Zip had planned to make it into a music room, a home studio, a place for his guitars—he had nine—and his bass guitars—he had three—and his four-track recording deck, and his electronic keyboards. But the house sat in a part of town that tended to be wet and our neighbors told us that someone did a geological survey one time and they discovered a hidden river running below the earth. We had a sump pump and every so often we’d hear the thing kick on and send water spewing into the polyurethane pipe that drained into the street. It was too wet to put instruments down there so Zip took the cases and slid them into a long, wide closet under the stairs, just off the study, and gradually his music room went black with mold.
Every morning I got up and went to work at the college. I took on an overload teaching assignment to make more money; when I didn’t have papers to grade or courses to prepare, I tried to write something that would get us out of there. Our plan had been that Zip would find work and Haley would go to day care while Chase was in school and, in between, we’d work on the house. But this part of the Midwest had taken a turn for the worse and there were no jobs for Zip. It didn’t take long before Haley got mono at day care and we realized Chase needed someone at home after school. After that, I’d come home from work and find the three of them in the driveway, Chase on his bike and Haley in her racing car and Zip on a bike, wobbling in slow, easy circles behind them.
Zip hung drywall in the doorway-shaped hole and then sanded and primed and painted the room. He crawled into the space below the eaves to figure out why water leaked into that corner of the house. He redid the floor in the front foyer. I stripped the wallpaper from the walls and he painted the dining room. We had the counter in the kitchen replaced after we got a dishwasher.
One evening, when I came home from work, I found Zip doing laundry while Chase sat at the kitchen table and refused to do his homework. No one had started supper and as soon as Chase saw me, he jumped out of his chair and said, “Mom’s home. I’m done now!”
Zip turned away from the washer and shoved a wad of damp towels into the dryer. “Chase,” he said. But Chase was already gone; we could hear him on the stairs and then the sound of a racing car coming from his room.
“Hey,” I said. I hung my briefcase on our old brass coat tree and slowly unrolled the scarf from around my neck and then took my winter coat—an old navy blue cashmere coat I’d bought in the East Village—and slipped my arms from the sleeves and shook the coat before I hung it up.
“I told him to sit there until he was done,” Zip said. “I didn’t tell him to sit there until you got home.” He turned the dial on the dryer and slammed the door shut and pushed the start button. “Chase’s teacher was here this afternoon,” he said.
“Here? Why? Was I supposed to be here?”
He shook his head. “She just showed up at the back door.”
“Why?”
“She said if we couldn’t get him to do his homework, she was going to try. She sat at that table for an hour and tried to get him to do his work. But he didn’t do much. He kept getting up and walking away. She told me he was going to have to focus more.”
“That’s original,” I said.
Zip shook his head. “She said that he keeps telling her that kids are bothering him at recess but he doesn’t play with anyone. And then she complained about his clothes and his appearance at school. She said he needed to come to school in better clothes.”
“He chews all of his shirts,” I said, “and then there are holes. He wears clean shirts when he leaves here. I don’t know what else we can do.”
“And his hair,” he said. “She said we need to wash it more often. And that he’s always dirty. That he smells.”
I leaned against the doorway. I could smell laundry soap and the heat from the dryer. I breathed in and out, and finally said, “What do you want for dinner?”
He shrugged. “I don’t care.” He brushed past me, out onto the back porch, and sat down on the second step from the bottom and took his cigarettes out. I couldn’t understand how he could sit outside in the cold but I stepped out after him.
“I can make chili, if you want,” I said.
He smoked and didn’t say anything.
He faced away from me, out to the backyard. I’d pulled the car into the garage and you could see tire tracks in the snow pack, icy tracks so compressed they took the imprints of the treads and froze the patterns into place. The fact of the matter was that it was true: Chase did have an odd aroma, one that I noticed whenever I went into his room, whenever I stripped the sheets from his bed, whenever he stood next to me. Fresh from the bath, that aroma moved with him like an invisible cloud. Years later, I’d tell a geneticist about it, Chase’s odd, off smell; I told her that Zip had it, too. Some days it was really strong, and some days it was barely there. Chase had had it for a long time but it wasn’t something Zip had until after we were married. She took notes and nodded and I felt helpless because I couldn’t produce the odor at that moment, so she’d know what it was. When Chase’s third-grade teacher complained about it, I had even less ability to explain this to her; I didn’t know then that genetic metabolic disorders are sometimes signaled by strange odors.
Chase also had dirty hair some of the time because by the time he was seven or eight, he no longer tolerated water in his eyes and thrashed and screamed in the bath when his hair was washed, and flung water everywhere, and howled as if we scalded him without care. Zip and I had to tackle the shampoo process together, one of us holding Chase down while the other sudsed and rinsed. Afterward, the bathroom would be flooded. We couldn’t face this more than twice a week. And Chase chewed on his sleeves and the neckline of his shirts—all soft T-shirts or sweatshirts for he could not tolerate anything scratchy, anything with buttons—until the enzymes from his saliva had burned through the fabric. We could not afford to keep replacing things and when he’d chewed his cuffs down to shreds, I’d cut them off and sew hems in the short sleeves so he’d still be able to wear the shirt.
By third grade, it was clear that Chase did not like homework and would find any means possible to avoid it. Some days, he flung open the back door and simply ran away, down the alley behind our house, down the busiest street in town, across the bridge that arched over the scummy river, anywhere he could be free of us and of the things we expected him to do. In the winter of his eighth year, a psychologist told us to padlock him in his room to keep him from running away. I hated the lock but I hated the idea of Chase lost or gone or crushed beneath a truck even more, so Zip went to the hardware store and bought a lock that fit on the door like a plate on a hinge, with a loop for a padlock, which we planned to keep in the loop with a key in the lock at all times. He drilled the door frame and screwed the lock in place and Chase watched. Once he was inside his room and the lock was turned, he kicked until the wood was splintered and the door pulled away from its frame. The lock dangled from one edge and he was out again and running and running and running.
The smoke from Zip’s cigarette curled upward in a blue stream. I leaned one hip against the railing. A single star, so huge that it must have been a planet, hung on the horizon in front of me. “Like a diamond in the sky,” I said softly. I watched Zip’s back. He wore his old beret and his shoulder bones poked sharply through his cardigan sweater; he looked thin, suddenly, as if he’d lost a lot of weight fast. His hair was dirty. I couldn’t remember the last time he’d bathed. He no longer slept in our room but had taken to sleeping on the sofa every night, telling me that he liked to stay up late and he knew I had to get up early. He slept in his clothes and then wore the clothes the next day, the same clothes night after night and day after day. Now
he sat on the back porch in clothes he must have had on for a week and smoked and when the cigarette between his fingers was nearly down to the filter, he shook the pack and lit another. All around us, kitchen lights had come on, yellow squares and oblongs, the occasional shadow of a shape or hand, where someone prepared dinner.
“You’re at home,” I said at last. “I can help but you’ve got to keep the kids clean, at least. You’ve got to make sure their teachers don’t think they’re suffering from neglect.”
“Yeah, right,” he said.
“I can’t do it from my office at school. If I were here, I would. But I can’t. I’m at work.”
“Blame it on me,” he said. “You always do.”
“That’s not the point,” I said. “That’s not what this is about.”
He sucked smoke into his lungs and looked out over the road that ran next to our house.
“Do you think you can do this?” I said.
“Whatever you say,” he said. “You’re the boss.” His voice was filled with contempt.
“Please don’t be like that,” I said. “I’m just trying to figure out what to do. Do you agree that we can’t have Chase’s teacher showing up here for visits out of the blue? Do you know what that says?”
“That she doesn’t know how to mind her own business?”
“Come on,” I said. “That isn’t going to help.”
But he stopped talking and stood up and brushed the seat of his pants and slipped his cigarette pack into his shirt pocket. He opened the back door and walked away from me, into the house. I walked down into the driveway and took a deep breath and stared up at the big star. A gust of wind came across the snow and I felt dry, icy crystals hit my cheeks. The house suddenly felt like it was going to be too close, too hot, too airless for me so I stood under the new evening sky and let the wind blow snow dust against me.
When I went inside and up to Haley’s room, I found her coloring in her Lion King coloring book. She wore her Lion King sweat suit, with the smiling lion faces printed on the front and the yarn fringe around her hood, like a mane. She picked this outfit every day and sometimes I had to slide her out of it when she was sleeping just to get it clean.
The Boy Who Loved Tornadoes Page 14