She looked at the toaster.
“Why don’t you come with me to see Chase?”
Her eyes widened and she shook her head and took a step back from me. “No, thank you,” she said.
“It won’t take long,” I said. “And we could stop at the CD place on the way home.”
The waffles popped up and she leaned over the toaster and examined them carefully and then pushed the lever down.
“Why don’t you ever want to go see your brother?” I said.
She looked away from me. “I just don’t want to.”
“But why not?”
She shook her head and lifted the lever on the toaster and popped the waffles up and put them on a plate. “I just don’t want to,” she said.
“What are you going to do today?”
“I have horseback riding.”
“After that.”
She lifted one shoulder and dropped it.
“Play guitar?”
She shrugged again. “Probably.”
“Could you clean up your room?”
“I like my room the way it is.”
“He’s better,” I said. “You haven’t seen him in a while. He’s doing better.”
“Does he know who you are?”
I shook my head.
“Then he’s not really better,” she said.
“He’s better than he was,” I said. “Every time I see him, he seems a little bit better.”
She looked away and then back at her plate and then picked up her waffle and took a bite. “I don’t want to have an autistic child,” she said.
I nodded. “That’s reasonable,” I said. “I didn’t want to have an autistic child, either.”
She studied her waffles and narrowed her eyes and gave me a puzzled look that felt accusatory at the same time, as if she believed that I had had a choice in the matter and had chosen this for Chase and for us, or as if I had secret information that she needed and was refusing to give to her.
I explained that there was no predicting that something would go wrong with Chase and that even now the doctors were confused about what that thing was. “I can’t promise you that you won’t have a child with a disability,” I said, “but I think the odds are strongly in your favor that you will not.”
She looked at me again, not with a hard look but with a face so bland and quiet that I knew whatever she was asking had a great deal of importance to her.
“What about my dad?” she said. “Isn’t he sick?” She kept her voice casual, even. She looked at her plate but at the last minute raised her eyes and looked at me. When I didn’t answer right away, she took a bite from her waffle and acted like she had all of the time in the world.
I sighed. “No one knows,” I said. “I think so, but no one really knows.”
She looked skeptical.
“Dr. LJ says that if there is a genetic issue, it will show up earlier and more severely in each subsequent generation,” I explained. “All we know is that Chase is really sick. It might be genetic and it might be on the male line. But it might not be. Since no one really knows, no one can say anything definite.”
“So I won’t have an autistic child when I grow up,” she said.
“Oh, Haley,” I said. “Probably not. No one knows for sure so I can’t make you any promises. But probably not.”
Haley kept a picture of her father in her bedroom, a photo of Zip pulling Haley on a sled across our backyard while it was snowing, next to a snowman that we’d made in the afternoon, when all the schools in town closed early. She told me she didn’t really recognize him in the photo. Sometimes, she remembered the way her father picked her up and flew her through the air like a bird, flew her through the kitchen and the dining room, the living room and up the stairs, to her bedroom and her bed, as if she herself was flying on her own wings. Over time, as he never showed up or called to talk with her or sent her a birthday card or Christmas present, I could see her father disappearing from her memory, not abruptly, but slowly, like a long slow drip, where each drop that fell was never to be recovered and took a long time in the letting go. She began to test her memory of him. Every once in a while she’d say something like, “My dad liked the Titanic, right?” And I’d recall Zip’s obsessive interest in the subject, the way he collected books about the sinking and then read them over and over and over again. He kept those books on a shelf next to his collection of toy soldiers, little iron figures dressed in the coats and puttees of the First World War, each in a pose that a soldier from that era might assume: here were the artillery men, and the foot soldiers, the messengers on bicycle, the riflemen lying prone, and the radio operator and the cooks.
When I told Haley that her father was very interested in the First and Second World Wars, she nodded as if this was confirmation that she’d had a father and could count on the fact that she would remember him.
She wanted to know about his rock-and-roll band so I pulled out the old posters and tapes and she took them to her room, where silence followed for a time. After a while, I heard Zip’s voice and the siren clamor of Mickey’s guitar as he imitated the whine of bombs falling from the belly of a plane. When I went into her room after that, I saw that she’d propped the poster up where she could see it from her bed. She wrote the name of his band, the Strangers, in repeating lines like a list over the knees of her jeans.
She took up guitar and I could hear her trying to learn Nirvana songs in her room when her homework was finished. She had a black and white Telecaster knockoff that I’d gotten her for Christmas the year she turned twelve, with an amp and a webbed nylon strap. She began to save up for distortion pedals; later, when she was thirteen, we would be making weekly trips to the local music store, where she could try out better guitars or test different pedals and feel herself admired by the young men who staffed the store for the fact that she was learning to play. She wanted to form a band and waited for one of her friends to get a drum kit so they could get started. She worked at the guitar and felt that this was something all her own. I smiled when she said this and thought that she had either gotten the guitar-playing DNA from her father or else had taken up the guitar as a way to supply his presence.
Now she finished her waffles and put her plate in the sink.
“Why don’t you come with me today?” I tried again. “He’s a little bit better. You can see for yourself.”
She raised and lowered that same shoulder, that same eloquent shrug, the lifting of loss and the inability to fully embrace hope, and she lifted and lowered it again. “Okay,” she said. “I’ll go.”
EIGHT MONTHS HAD PASSED since Chase came to Murdoch. The weather had turned warm and we had begun to take walks when I visited and, when we walked, the visits assumed a predictable shape. We walked after Chase’s meal and we always walked the same inner loop of driveway that circled behind the Murdoch Center cottages, and Chase always walked along the inner gutter, where concrete made a path different than the asphalt. An aide came with us, for Chase did not yet have campus independence. We walked without speaking. Afterward, Chase walked with me to my car and, when his aide directed him to, waved when I left.
We kept reducing his medication; he no longer drooled or slept for half a day. He spent more time in the classroom and he learned the token system and he moved up to unit independence. He had a speech and communication therapist and a recreational therapist and an occupational therapist and a psychologist and a nutritionist. He had pet therapy with a dog named Tucker. I brought him a photo album filled with pictures of his family and his therapists worked with him and worked with him. No one debated his diagnosis anymore and eventually I stopped asking what was wrong. I began to understand that in searching for a name I was hanging onto the idea that there was yet a treatment out there, yet a cure that we might find, and in fact neither of those things was true or possible. I stopped seeing Chase as a child I just had to get back on track and saw him as he was, tall and painfully thin and unable to care for himself, unable to c
ommunicate, beset with the unseen, the unknown, the unnamable, but arrived into himself completely, as if all of this had been hardwired, preordained from the start. Dr. LJ tried different words when the treatment team met every quarter to review Chase’s progress—Lennox-Gastaut syndrome, movement disorder, psychosis NOS—but finally said that if he was going to be completely accurate, the only thing that he could call what plagued Chase was “Chase NOS”—Chase Not Otherwise Specified. “He’s a population of one,” he said.
When we walked, I talked with Chase about his childhood. I talked about his trains and our big drafty old house in the Midwest, and the way we had played red light – green light when he was a little boy riding his bike in upstate New York. I talked about the trips to the playground where he had loved the slide and about the days we spent swimming in the lake or about that time we got so sunburned and about the day that his cat came to live with us. I talked about the year the Christmas tree fell over and the year he had a windup train on top of his birthday cake and the time we went camping with our friend Donna. We would scuff along the driveway and step to the side when one of Murdoch’s white laundry trucks came by. The driver would slow and wave to us through the open door. When we would pass other cottages, their patients would often be sitting outside in the shade and we would wave to them as we walked by. Former residents, long gone into their regular lives out in the world, still came back to visit with the oldest members of the staff. Murdoch had become a place where there were twice as many staff as patients, but under the reform movement, it might be forced to downsize, and services would be lost. I worried about BART closing, because beyond BART, there was no place in the world for Chase.
But today with Haley was a hot summer day and the pale sky was big and empty, limitless and infinite, and the three of us set out from the BART cottage and crossed the lawn behind the cottage and turned up onto the circle. Haley walked beside her brother and looked up at him and then looked away and then walked without looking at him at all and then looked at him again. Chase looked at her and looked at me and he said, “Not Haley.” And I said, “No, that’s Haley, it is.” He looked again and said, “Shorter. Different glasses.” I stopped and stood with my son and my daughter under the open, endless sky, under the bright sun and the cloudless infinity, and put my hand on his arm. “Chase,” I said, “this is your sister. Some time has passed and she’s gotten taller and she got new glasses. But this is your sister.” He looked at her with interest and Haley said, “Hi Chase.” He looked at her and his lips began to twist a little and then he looked closer and said, “Are you in tenth grade?” She smiled and said, “No, I’m going into seventh.”
“You go to McDougle?” he asked.
Haley nodded.
“Cool,” he said.
I touched his arm again. “So this is Haley,” I said, “and I’m your mother.” But his face went blank and his lips were moving and his hand patted his thigh and he turned to the space beside him and said something and laughed and then he turned away and started walking again and Haley and I walked along behind him, following the gray trough of concrete that circled the ring of cottages, and passed the Munchroom and the gym and the outdoor pool, and none of us spoke.
When we had gone twice around, Haley and I followed Chase beyond the cottages to an open lawn, where short, dry grass crunched crisply under our feet. He walked and walked until he was in the middle and then he opened his arms and spread them wide and began to turn circles under the sky, a long shadow falling from him toward the road and then spinning away as he turned.
Haley watched him and then I came up to him and he turned toward me and smiled and stopped turning and took my hand. “Hey Mom,” he said. “Mom. I’ve never been in this field before.”
EPILOGUE
It took a year but there came a time when Chase always knew me. I drove up to Murdoch on the weekends and he saw me when I came through the door and he smiled. “What’s up, Mom?” he said, and came toward me with his hand raised, ready for a high five. After a while, when I came to visit, he leaned over me and gingerly folded his spindly arms around me in a delicate hug, as if his body were a bony cage.
When Chase had known me quite consistently for quite some time, the treatment team decided it might be therapeutic for him to go off campus for visits. I’d pick him up and then we’d stop for burgers and drive down to a little lake in town, where we could picnic under the trees and watch people fishing from the docks. The lake was man-made and a small waterfall ran along one side, where the blue lake rolled over a cement dam into a broad brown creek. On our shore, where we sat with our burgers and fries, there were hardwoods right up to the water’s edge, their roots tangled in bare dirt, and a rocky lawn.
Chase didn’t say much to me on these trips but when I wanted to remind him that we were together, I’d lift my hand, palm out and he’d lift his and touch his hand to mine, palm to palm, our regular embrace. Sometimes he asked to go for a ride before we went back to Murdoch. When we got in the car, he arranged the new CD player so that he could listen to U2’s “Bullet the Blue Sky” over and over again. I’d turn north from town and drive up to Oxford and cruise past the big old houses on College Avenue and ask Chase which one he would buy, if he had the money. Sometimes he answered. Usually he did not. Sometimes we just drove east, past old farms and new developments, where tobacco had given way to some kind of real-estate boom signified by the cheap, pale yellow houses that had mushroomed everywhere. After a time, Chase patted my arm and peered at me as I drove and said, “Can we go back now?” Once we stopped for the cheapest gas I’d seen in months and after I ran my credit card through the slot, Chase pumped the gas, leaning lightly against the car as if this was something he’d done all his life.
In the beginning, he kept his eyes trained on the sky, as if things the rest of us could not see might still come in from the horizon. He still talked about bridges falling and terrorist attacks and bombs in the lobby nearly all of the time. He also talked about space travel and time travel, and how World War III came upon us in 1987 and he had to resurrect the dead so there would be a human race to go on living. If I asked him questions about these things, he turned his face away and said, “Never mind.” Sometimes he laughed in an incongruous way and shook his head and held one hand up and palm out in my direction and said, “No, man, no, no,” as if I were asking him to do something he chose not to do. I wondered if he thought I would return him to the hospital if I knew what was in his head.
But he could answer questions. If I asked him about his lunch, he could tell me if he liked it or not. He pointed to the burger he wanted me to order at the burger place. He answered when I asked him about his job. “It’s fine,” he’d say. “I’m fine,” he’d say. “Things are fine, Mom.”
He made slow, steady progress. He grew an inch. He put on ten pounds and then another five. Suddenly he was six feet eight and weighed almost 180; while he was still very thin, his painful look of emaciation was gone. To make sure he didn’t lose weight, he was allowed to have unlimited calories each day.
Every three months, the treatment team got together and talked about his meds and we agreed that we would try to cut them back as much as we possibly could. “We’ll keep pushing him until he pushes back,” Dr. LJ said, and that seemed right to me. Over the course of the first year, we stopped one of the anticonvulsants altogether; by the end of his second year, we had tapered the Clozaril to a dose that was barely in the therapeutic range.
After two years, Chase had a weekend home visit every month; he’d come to Chapel Hill and sleep one night in his room. At first, he wanted to look at all of the things in the boxes in his closet as if to make sure that these things were still there. He sat on the floor and spread his action figures out around him and made one of his Star Wars planes fly through the air, just as he had when he was younger, its wings dipping and tilting and I heard him make a rushing sound under his breath, quietly, like a ten-year-old restored. When he was finished with the plan
e, he examined the boxes that held his trains and he had me set up his solar system so he could look at the planets that turned around the sun. He opened the box of comics and looked inside. He reached into his dresser drawer and carefully cradled the Eagleman comic book his father had drawn for him, years before, in the Midwest.
But he asked for these things less and less, for time had passed and Chase was no longer a child. He was nineteen and he shaved and the toys he once loved were now souvenirs of a long-ago childhood. Eventually, we found another rhythm: pizza for dinner on the night he came home, a DVD, bed, a day’s outing the next day. Sometimes he rode out to the barn with me and watched Haley ride. Sometimes he just wanted to go to places he used to go: the comic-book store on Franklin Street, Schoolkids Records, the coffee shop where he and Melissa used to get juice. Usually, he just wanted to stay home and listen to music in his room. Sometimes he’d nap on the sofa, as if being at home allowed him a peace he could not find elsewhere. He told me that he liked it at our house because it was so quiet. Still, by four o’clock on the second day, he was anxious to be on his way back to Murdoch and would grow agitated and restless if we were delayed, and pace through the living room and dining room and say, “Is it time to go yet?” In these moments, I knew that while he liked to visit us at home, he still felt safest at BART.
EARLY ONE EVENING, AS we waited for pizza to be delivered, Chase paced up and down in the living room, patting his thigh and patting his thigh. I called to him and asked him if he wanted to watch TV, but he didn’t respond. I heard low words under his breath, but I couldn’t make sense of them. Whenever Chase spoke in public, people often turned to me for translation, but I had no private Rosetta stone for his language.
Haley came down the stairs, took a plastic cup from the cupboard, filled the bottom with chocolate syrup, poured milk into the cup, and stirred her drink with a table knife. She’d put fresh streaks of turquoise in her hair and wore a T-shirt that read “Strange Is Not a Crime.” The phone rang, and she reached up and lifted the receiver. She frowned, and then she said, “This is Haley.” The person on the other end said something and she held the receiver out to me.
The Boy Who Loved Tornadoes Page 34