We’d had CAP workers since Chase was twelve. CAP stands for North Carolina’s Community Alternatives Program. Designed to keep the developmentally disabled, medically fragile, or AIDs-suffering population out of institutions, CAP paid for a worker to come to our house every afternoon after school and stay until Chase’s bedtime and for another who came on weekend afternoons; it paid for an occupational therapist to come twice a week and a speech therapist to come once a week. It paid for respite care so that I could go to the movies with friends or close the door to my room and lie on my bed or go to the gym or take Haley to the store.
Our first CAP worker had been an MP in the army and thought the military way was the best way and the only way. She swiftly instituted a strict system of order, followed by equally strict punishment for disobedience. Her method of communicating with Chase was to bark commands from which he shrank and retreated. She complained to me: Chase wouldn’t keep up. Chase didn’t even try. Chase was totally noncompliant. Chase needed strict discipline to shape him up. It didn’t take long before I realized Chase was afraid of her.
Our next CAP worker was a young man named Samuel; he stayed for almost a year before getting engaged and going off to graduate school in Buffalo. After that came Ted, the Young Republican whose sole interest in working with Chase was to get some clinical experience that would help his graduate school application in clinical psychology. He complained about the way I kept house and regularly made remarks about the ways in which single mothers and black people and anyone else he could identify with unsteady domestic economies brought their troubles on themselves. After nine months, he was gone and Chase mourned his loss, for Ted had been a college student who tried to teach Chase some of the nuances of cool, along with how to pick up his room. After that, we had Mitch, who lasted three weeks, and then Andrew. And then came Robertson, about whom I tried very hard not to think.
After a time, I realized the hall light was on and someone was coming down the stairs. I sat up and reached for my robe. By the time I got into the dining room, Chase stood unsteadily at the bottom of the stairs, staring at me.
“Do you want a drink of water?”
He nodded.
I got a glass and some ice and gave him his drink, stood next to him while he drank it, and then told him to go back upstairs.
“Get some sleep,” I said, and glanced past him at the kitchen clock. It read 2:13. I felt something inside me sink a little. In less than three hours, Chase would be up for the day.
Four nights later, when I came home late from work, Chase sat in the corner of the kitchen by the front windows and Melissa sat across from him, and Chase’s favorite book—the one about gargoyles—lay open on her lap.
“Chase can’t really be upstairs by himself right now,” Melissa said. “He’s pretty scared.”
I put my hand on his head. He didn’t shrink from my touch but looked at me, his eyes big, dark, staring.
“Did you have another bad dream?” I asked.
He didn’t reply but looked around me and then flinched and looked again. I looked at the wall to see what Chase saw, but the wall was blank.
I looked at Melissa. “Is Haley asleep?”
Melissa nodded.
“Chase? What’s going on?” I spoke to him in the hale and hearty let’s-get-the-job-done voice of an emergency worker. I’d found myself using this voice with Chase more and more frequently. It was as if I believed my brisk voice and the firmness of my statements would, by intention alone, get him back on track. I’d begun to lose faith in this approach when Chase saw the profilers out at the state park. I’d lost more faith when Chase barely spoke to anyone but paced around the house and refused to sit still, or woke me in the night with screams. He’d gone to school on Monday but had begged me to come and pick him up in the afternoon. I told him he needed to walk home. He said the Crips were after him. I reminded him that there were no Crips in our town. He said he saw them. He said they followed him. I tried to see things as he must: the five blocks home from the school with ragged figures dressed up like hip-hop stars traipsing along behind him, maybe saying things to him, maybe calling his name, maybe waving guns or knives. I stopped. I told him that it was important for him to walk home and realize that nobody was following him and nothing could hurt him.
By this time, I’d e-mailed Dr. LJ, who’d cared for Chase ever since we came to Chapel Hill, about med changes, but Dr. LJ seemed unimpressed with my description of the changes in Chase. When I spoke with him on the phone and asked if Chase should go to the ER, he said that he didn’t know what the ER could do to get Chase stable. He asked me to increase the dosage on one of Chase’s meds, so that he’d be taking 12 mg a day. When I saw Chase that night, speechless and terrified in a chair in our kitchen, my faith in the effectiveness of med changes or in what I was going to be able to do slipped a little bit further away.
“Chase,” I said again. “What’s going on?”
He stared past me at the hallway behind me. “The nailers,” he said. “They were coming in.”
“The nailers? Who are the nailers?”
“They nail you to the chair and kill you,” he said. His eyes brimmed with tears.
“Where did you hear about nailers?” I said. I looked at Melissa. “Is this a comic book thing?”
“I don’t think so,” she said. “He’s been talking about them all night.”
I knelt down in front of Chase and put my hands on his shoulders. “There is no such thing as a nailer,” I said. “Do you hear me? They don’t exist.”
He nodded slowly but his eyes were dark and wet and fearful.
“Do you understand?” I said. “No such thing at all.”
He nodded again. But he looked past me and watched the invisible world crawl up the wall behind me and turned and flailed his arms a little and then took a deep breath and wept.
“It’s okay, Chase,” I said. “It’s okay. You’re okay. Come on. Let’s go up to bed.”
He shook his head.
“There’s nothing in your room,” I said.
He stared at me and shook his head again.
“I’ll go up with you,” I said. “Come on. You’ll see.”
“There’s the executioner,” he said.
I shook my head. “No such thing,” I said brightly. “Can’t be.”
“Mom,” he said.
“No,” I said. “Come on. You’ve got to go to bed. You’ve got school tomorrow.”
He looked at Melissa.
“Your mom’s right,” she said. “It’s way past time for bed.”
“Okay?” I said. “You’re fine. I’m home now. You’re completely safe. I will not let anything hurt you. I promise. That’s my job. Remember? I will always keep you safe. You’re in your own bed in your own house. You are fine. I’m here. It’s okay now. You don’t have to be afraid anymore.”
I offered him my hand and after a while he took it and leaned forward and hoisted himself out of the chair. We walked together from the kitchen to the stairs and then he walked in front of me, one hand on the wall to steady himself, his head drooping to one side, his stuffed bear in his other hand. When he got to the top of the stairs, he stopped and turned to look for me and pressed one shoulder into the wall and began to chew on his bear while I checked his room. One window blind dangled in a crazy slant across the glass; the other had been pulled down completely. I stepped around uneven piles of upended and overturned books and dragged his bookshelf back to its place under the window; he’d shoved it in front of his easy chair, which itself was pushed into position so that it could be shoved against the door. All of the sheets and blankets were off of his bed, which wasn’t surprising since he’d wrapped his white blanket around his shoulders while he sat in the kitchen. Waterfalls of clothing spilled from his dresser drawers. Anything that had been on a shelf was now on the floor, along with paper with strange letters and strips of the wallpaper border he’d stripped from the walls. Only his bed and dresser were left in their o
riginal positions. Anything that could be moved had been moved, until all the furniture in the room stood at cockeyed angles to one another, all of it in front of the door.
“All clear,” I called. “Chase. It’s okay.”
He came along the hallway and stood in the middle of the room and stared at the window. He pulled the blanket up to his head and chewed on the satin binding and didn’t say a word.
I picked up the sheets and blankets, remade the bed, and he watched me and watched the air around him, as if things would emerge from nothing.
“Come on, Chase,” I said. “I’ll tuck you in.”
He got in bed and I pulled the blankets up to his chin.
“You’re safe now,” I said. “You can go to sleep now. Here,” I said, and took his hand in mine. I leaned down and put a kiss in the palm of his hand, the way I did when he was a little boy, so he could hold onto it until morning.
He looked up at me from the bed. “Mom,” he said. “Mom. Mom. Mom. Would you perform a mercy killing on me? Mom? Would you do a mercy killing on me please?”
“No, Chase,” I said. “I won’t perform a mercy killing on you.”
“Please, Mom,” he said. “Please, Mom, please, Mom. Mom. Mom. Please.”
“Go to sleep now, Chase. You’re safe. You’re at home in your own bed. I’m here. I love you. Goodnight, buddy. Sleep tight.”
He didn’t close his eyes when I left. I went downstairs and made tea and Melissa and I sat on the sofa in the living room. My stomach felt hollow, the way it does when you stand on a high place and look down and imagine that at any moment you will slip and lose your hold and fall. I looked at Melissa. “What happened?” I said. A blind man could see what had happened but I wanted to hear it, beginning to end, from her.
Melissa stirred her tea thoughtfully. Then she said, “It started out like a pretty normal night. I sent them up to bed and Haley went quiet. But there was banging in Chase’s room. And I knocked on the door and he was doing something and he was kind of freaked out. He said the nailers were going to come get him. I asked him if he wanted a story and he said yes. So I read him Gargoyles and told him he could leave his light on but it was time to go to sleep. I went back downstairs. More banging. I went back up to his room and he was in there, moving stuff around. The whole place was trashed. And I said, ‘What are you doing?’ And he looked at me and he had these big scared eyes and he said, ‘The nailers are coming for me.’ I told him there were no nailers but he said, ‘There was a thing in my room, there was a thing in my room.’ And then he shrieked, ‘Can’t you see that? It’s right there!’ And I don’t know if he was hallucinating but I told him there was nothing there. He kept screaming, ‘It’s right there! Don’t you see it? Melissa! Don’t you see it? It’s right there!’
“Finally I got him to lie down in bed. And I came back downstairs but then there was really horrible banging so I went back upstairs and tried to open his door. I couldn’t get it open so I pushed really hard. He’d put his chair in front of the door and when I pushed it open, the chair moved and he freaked out, because he thought I was whatever it was coming into his room. He started screaming. And I came in and he was covered in toothpaste. It was all over his hands and his face and his hair. He said he was using the toothpaste to protect himself. So I got a wet washcloth and mopped him up. And then I wrapped him in a blanket and brought him downstairs and he just sat there totally scared, saying things like, ‘Did you see that?’”
Melissa sipped her tea and I stared at the floor. I listened for sounds but the upstairs of my house was, for the moment, quiet.
“I don’t know,” I said. “Maybe he needs to go to the ER.”
“He was talking about the death penalty, about how he was under the death penalty,” said Melissa. “And then there was something about the executioner. He kept talking about being killed.”
We sat there in silence.
“If I took him to the ER, how would that work?” I said at last. “He hates hospitals now. What if I couldn’t control him? I’m not even sure I could get him there. What if he freaked out and tried to get out of the car? What if he tried to run away?”
I remembered Chase in a frenzy, trying to get out of a moving car when he was five; I remembered him constantly running away when he was seven, kicking me when he was angry, shuddering with fear before his last surgery, clutching my hand with a grip so tight my fingers went numb as we crossed the pedestrian bridge from the parking deck over to UNC Memorial Hospital in the predawn dark on the day of his last surgery. He was a big kid then, 6 feet 3 inches and 205 pounds, and a fragile kid who could be easily hurt. The surgeries had left him terrified of hospitals and I couldn’t predict how he’d react to the news that we were headed to one now.
At such moments, you have to make decisions based on a mix of things, none of them quantifiable. How much of my reluctance came from my unwillingness to tempt fate by driving Chase through a dark town, when he could not be anywhere where there weren’t eye-blasting amounts of light? How much came from the plain inconvenience of having to arrive at a hospital in the middle of the night? I thought of things like work the next day and Haley’s school and who I might call and how any of this could be arranged, so I know that I was operating from some deep place of assessment: Is this serious enough to require that we go right now? Or can it wait six hours, until morning brings daylight and phone calls to psychiatrists? And I’d read a small story in the New York Times about a man who was killed on a highway in Queens. His family had tried to care for him at home but when they could not and they could not find a place to take him, they decided to bring him to the ER to see if his medication could be changed. When they got to the hospital, the man was frightened. He couldn’t be controlled. He ran away, straight into traffic on a high-speed road, where he was struck and killed.
For a minute, I imagined going through with it. I pictured the three of us, Chase, Haley, and me, sitting in the pediatric ER until two in the morning. The rooms around us would be filled with other injured and sick children. At two, the pediatric unit would close and the nurses would move the kids who hadn’t been treated yet over to the adult ER. Chase, who would present as a complex and difficult case, would join them. He would wait on a gurney in the hall, while Haley and I stood next to him. All around us would be things I didn’t want either one of them to see.
“His doctor doesn’t think he needs the ER,” I said.
Melissa gave me a dubious look.
“He increased his meds. Maybe I just need to give that time to work,” I said. “I think we just need to keep doing what we’re doing. I think we need to get him back on track and get him moving forward again. I’ll call his doctor in the morning.”
“Are you sure? If you want me to stay, I’ll stay.”
I told her no thanks. By now, Chase was asleep and he would stay asleep until four thirty or five. When he got up, he’d play his music too loud and it would finally be just like any other day.
IF YOU SPEND ENOUGH time among parents of disabled children, someone will give you a copy of an inspirational story, which tells how a family bought their tickets for a trip to Italy and planned for their trip to Italy and looked forward to their trip to Italy but when the day to go to Italy arrived, they were told they were now on a plane that would land in Amsterdam. They were also told that they must not worry because Amsterdam, while not Italy, was also a very beautiful place, with its own wonderful flowers, its own breathtaking works of art. The point of the story comes near the end, when the narrator concludes that Amsterdam is a darn fine place, full of riches she never would have expected, and she’s awfully glad she got to go there; even though it wasn’t the place she wanted to go in the first place, it ended up being a very fine place, in fact, the best place in the world. The story turns on the idea that one thing can be supplanted by another, that something as simple as X, known as Italy, can become something else, Y, well-known by the name Amsterdam; in this equation, not only will Amsterdam be equall
y pleasing, Amsterdam will hold unanticipated delights.
I’d already landed in Italy and been in Italy for some time when I learned that Italy might not be my final destination. And when I was told that Amsterdam might be my city, not Rome, I was told that I also might be headed to Paris or Tokyo or Algiers, as well, and at some point I might be in all four places at once, we’d just have to wait and see, try to understand as things emerged, make sense of it as we went along. I was shown a Venn diagram to explain how it could be that Chase would be a citizen of all of these cities at once, as well as of others that had not yet declared themselves.
The first moment of Chase’s disability was either hidden and might never be known, or simply kept happening, again and again. Often, in those days, I would lie awake and try to think it through, try to understand when everything started, try to understand where we had gone wrong. But the inescapable truth was that, instead of one first moment, there were many, from the time Chase’s pediatrician said that something might be wrong right up until the time Chase’s doctor told me that no one really knew what to call this thing that was wrong with Chase. Each moment brought with it a new set of words, and those words did not pin down truth. Those words destabilized all meaning: global developmental delay, severe ADHD, pervasive developmental disorder, Tourette’s syndrome, obsessive-compulsive disorder, complex partial seizure, Asperger’s syndrome, atypical autism, psychosis, absence seizure, epilepsy, mild mental retardation, bipolar disorder, affective disorder, grand mal seizure, seizure disorder, Capgras syndrome, schizophrenia, schizoaffective disorder, movement disorder, movement disorder not otherwise specified, affective disorder, moderate mental retardation, autism, psychosis not otherwise specified.
These diagnostic words piled up. All had some truth to them but none was essentially true. Plus, things with Chase evolved over time. When he was nearly three, his developmentalist thought Chase might be manifesting the symptoms of someone severely attention-deficit-hyperactivity-disordered but he wrote a letter to Chase’s pediatrician to say that while he could appreciate why so many people had observed something different about Chase, and ADHD might one day be a diagnosis he could live with, there were other possibilities, too; he preferred to wait and see if the best diagnosis wouldn’t, in fact, clarify over time.
The Boy Who Loved Tornadoes Page 3