When I had signed everything I needed to sign she turned to a thick stack of papers stapled together. She handed these to me. “This is our handbook,” she said. “It explains something about us and gives you all the rules about the unit.”
SHE LED ME BACK down the long hallway and we turned the corner and walked past the gym. She stopped in front of a wooden door with a window high above the doorknob.
“You can see Chase now,” she said, and pulled out her keys and unlocked the door. “Just go inside and wait. Someone will bring him around.” She held the door with her foot while she spoke to me and watched me walk inside. “This door will lock behind you,” she said.
The room was furnished with a brown vinyl sofa, a brown vinyl chair, a wire-frame chair with a black plastic seat, a wobbly table, a wastebasket, and a telephone on top of a dog-eared directory. Two windows looked out over the parking lot at the rear of the children’s unit, where cars lined up on the broken asphalt. Old green paint on the walls. Old brown linoleum floors. I sat on one of the chairs and then stood up and walked over and looked out the window. The windows were made of thick glass and the glass encased wire mesh. There was a noise in the hallway and a single file line of adolescent boys bumped and jostled by the window. I watched them but none tried to look my way.
I sat down again and waited. It was a big place that you would expect to find full of sounds but it was mostly quiet. I could hear the sound of the air-conditioning system as it put out lukewarm air. I rolled the tips of my fingers on the arms of my chair and then stopped. When I crossed or recrossed my legs, the vinyl on the chair squawked. I sat down and then stood up and walked around again and then sat down and was sitting when someone came to the door with a set of rattling keys and I heard the bolt slide back in the lock. Chase followed the nurse into the room. He wore blue hospital pajamas. The nurse sat on the wire-frame chair and flipped open a file and looked at her watch and then made a note on the page in front of her.
“Chase,” I said softly. “Hey Chase.”
He didn’t look at me but paced up and down in front of me. He was talking under his breath, grimacing and sighing and pointing to unseen things. The blue pajamas sagged around his waist and his hands were dirty. He walked around the room as if he were the only one in it.
“Would you like to sit down? Chase?”
He stalked the room in front of me. The room wasn’t large so he could only take five steps before he had to turn and then take five steps back to the opposite wall. He tapped his chest and then his thigh as he paced, and then fired lasers. He didn’t look at me or at the nurse. He paced and paused to strike a strange pose and then paced again. Then he crossed to where I was sitting and tried to kick me. I ducked away and stood up. The nurse jumped to her feet and opened the door that led back to the ward.
“Visit’s over,” she said.
Chase stalked through the door. The nurse looked back over her shoulder at me. “I’ll see that he’s in his room and then come and let you out,” she said.
“Can I walk with him to his room?”
“Against the rules,” the nurse said. The door closed behind her.
WHEN I GOT HOME, I took off my good clothes and put on a pair of old paint-splattered shorts and a paint-splattered T-shirt. I lay newspaper on the floor in the hallway and taped off the baseboards and the door frames with blue painter’s tape. I backed the screws out of the switch plates with an old screwdriver.
I pried open a bucket of paint with a church key and then stirred it until the color was true. I carried the bucket into the hallway and set it on top of some doubled layers of newspaper and took a brush and began to cut in around the doorway and the taped-off moldings. The hallway was the last room in the house due for a new coat of paint. After I’d painted Chase’s room, I’d decided that my room needed painting, too, and then the living room, the dining room, Haley’s room, the bathrooms. I’d decided we needed to get rid of the old carpet and Haley and I had spent one weekend pulling it up and prying hundreds of carpet staples out of the old subfloor. Haley used the crowbar to jack up the carpet strips along the baseboards and I knelt on the floor with a rubber-handled screwdriver and pulled the tacks. We swept up all of the dirt and Haley came along behind me and drew pictures all over the floor and wrote messages for the men who would come on Monday to lay the new wood floor, encouraging things like, Keep up the good work! Or, Good job! You’re almost there! They got a big kick out of that. I borrowed a friend’s truck and we cut the carpet into sections as we pulled it up and then rolled the sections and together hoisted them into the back of the pickup and drove out to the landfill. We lost part of our first load on an empty country highway and had to go back, laughing and moving fast, to pull our old living room carpet off the dark turning road.
I had apparently decided that everything about our house needed to be changed, as if by making a new house I could start us over again, as if I could build health for Chase out of paint cans and new floors. I worked the brush around the door frame and thought about Chase adrift at Umstead, nothing in place, no one talking to one another, until I couldn’t stand it anymore. I dropped the brush into the kitchen sink and closed the can of paint and turned the faucet on so water ran over the brush and used the handle of the screwdriver to tap the lid back onto the can. I washed my hands and turned the water off and left the brush to drain and wiped my hands on the tail of my shirt and walked over to my desk, where I’d written some phone numbers on a pad of paper. Squinting, I dialed the last number on the page and got Umstead’s medical director on the first try and asked him about the consultation with the Murdoch folks. He explained that he’d just now gotten off the phone with Raleigh and they would get the thing set up. He expected it would take some time, these things normally do, but within a week or two, they should have things in place.
“What are you doing about finding a place for your son?” he asked.
The million-dollar question.
I gave him the short history.
“You know that we aren’t equipped to care for children with developmental disabilities,” he said. “This is not a desirable placement for Chase. We would want a strict time line so we’d know that he was going to be moved along quickly.”
“I think you might want to say that to the people in Raleigh,” I said.
“My idea was that you would,” he said. “It will carry more weight coming from a parent.”
“I don’t think I have that kind of weight,” I said. “But I’ll try.”
“And I’ll send them an e-mail this afternoon detailing our concerns,” the medical director said. “I’ll tell them in no uncertain terms that an appropriate placement for Chase must be identified. It’s in everyone’s best interests to have him moved as quickly as possible.”
WHEN I SPOKE TO the man in Raleigh the next morning, he told me that he had said all he was going to say in our first conversation and he was going to have me speak to a customer-service representative for the division. From now on, I must direct all of my calls to him. He was the only one who would be able to help me, for he was an advocate for the customers of the system and would know the process I needed to follow.
The line went to Muzak and then someone picked up the phone and said, “Leonard Button.” He had a youthful, eager voice but he let me know that he’d been doing this work for twenty-five years and had two grown children and a PhD in anthropology. He said he’d been fully briefed on Chase’s situation the day before and was in possession of the e-mail from Umstead’s medical director and he felt he knew the whole picture well. He asked me about the area mental-health unit. He wanted to know what they’d done to locate a placement.
“It’s really up to them,” he said. “They’re the ones who need to step up to the plate. What’s your local unit again?”
“Orange-Person-Chatham,” I said.
“It’s surprising. They’re one of our best. I’d think if anyone would be able to help, they would.”
“I
don’t think they can help because the kind of facility that Chase needs doesn’t seem to exist.”
“Come now,” he said. “Tell me the places you’ve sent in applications.”
I listed them. “Most places won’t take an application from us,” I said. “Once they hear about Chase.”
“They just need to get a little bit creative,” he said. “They just need to put their heads together some more.”
I told him about the joint meetings between the developmental-disability and mental-health staff; I described the trip to Jacksonville and the director of that facility’s flat rejection of Chase, the way she’d flipped through the application and immediately said no; I explained that PATH had turned us down and that BART had no bed for him.
“I think it’s the state’s responsibility to provide a bed for him at the facility that’s been identified as the only facility in the state for him,” I said.
Leonard deflected that opinion. “I think you’d better call up your local worker and give her what for,” he said. “I think that’s the place for you to start.”
“You’ll forgive me for saying so,” I said, “but I don’t see that as the most productive way to resolve this. The area unit has done all that it can do. That’s why I called your boss in the first place. It seems to me, if he can’t solve it, and you can’t solve it, that the next place for me to call is not the people who work for you.”
“Now, now,” Leonard said in an unctuous voice. “Now, now. What we’ve got to do is give this thing a little time. Lawyers aren’t usually the best way to resolve things.”
“I’m not talking about an attorney,” I snapped. “But I would like to know how much more time you’d like me to give this. Chase was in Memorial for seven-and-a-half months. During that time, no placement appeared. He should not be at Umstead and yet he’s there. The hospital medical director doesn’t want him there. I don’t want him there. The state doesn’t want him there, because it’s illegal to house him there. How long do you want me to wait for a placement given these conditions?”
“I think you should call me whenever you have concerns,” Leonard said. “I think that’s the best thing for now. Call up your area unit and see what they can do for you and then call me if you don’t think you’re getting anywhere.”
YOU MIGHT THINK that the man who told me these things would have a hard time looking at himself in the mirror. I hope he does. But he is not the problem. Our profound unwillingness to care for those among us who cannot care for themselves: that’s the problem. Our entrenched blindness about illnesses of the brain: that’s the problem. The fact that we share these beliefs and assumptions in untested and misinformed ways, that before Chase I shared them, that you share them today if you have never come up against this illness in someone you love: that’s the problem.
THE PLANE TILTED just a little to the left as we came in over Manhattan and Haley looked out the window at the great shapes of buildings below her and the open green rectangle of Central Park and the wide gray avenues of midtown. Everything was bathed in a yellow light so the city looked almost golden. I watched over her shoulder and yet she stayed transfixed by the view. Finally she turned to me and said, “What is this place?”
“That’s New York City,” I said.
“That’s New York City?” she repeated.
“That’s right. That’s where I used to live.”
She looked from the view to me and back to the view again as if she had discovered a piece of information that challenged something essential. All through the spring, Haley and I had kept on. I had taken her to Washington DC. In June, we borrowed a friend’s house on Nantucket. It did not seem possible that we could get away, but it also did not seem good for Haley to continue to live in her brother’s shadow. We were held hostage to it as surely as if someone held a gun to our heads, in part because I believed that at any moment Chase would come back to us and I wanted to be there when that happened. But as weeks became months, I thought it might be okay to plan a trip in the early summer, just for a week. I’d take Haley on her first plane ride. We would fly to Manhattan and then get on one of the little props that flew out to Nantucket and look at the ocean and watch as the coastline of the island came shimmering into view.
At LaGuardia we had to run for the plane but they held it for us at the gate while the other passengers coughed and fidgeted and read their newspapers impatiently in their seats. When we were airborne out over the Atlantic, Haley stared down the aisle and out the cockpit window into the vast luminous blue of the sea and air. I pointed to the tiny white wakes behind boats and the ruffled waves that meant sandbars but Haley just shook me off and stared straight ahead. The noise from the props was deafening so she had to wait until we were unloaded onto the Nantucket tarmac to tell me how much she hated flying.
We stayed in the last house down a sandy road where dunes rose on either side and wild roses crawled over the split-rail fences that fronted all of the gray-shingled houses. We arrived at sunset and unloaded our things and then in the new dark found our way to a corner market with creaking wooden floors and old glass cases filled with meat and fish where we bought bread and cheese and tea and eggs and toilet paper and milk and juice and wine.
“Dinner and breakfast,” I said. “We’ll find a supermarket tomorrow.”
We could hear the ocean shushing into the beach as we loaded our paper sacks onto the backseat of the car I’d rented. Haley buckled up and her chin drooped onto her chest as I made our way through the soft sea air. She was already asleep by the time we got back to the house and I wished I could carry her inside, as if she were a much younger child, as if I could turn back the years for her and recover everything that had been lost.
In the morning, we ate breakfast with our plates on our laps, sitting in the living room where we could look out over a greenish pond. Herons stood delicate sentinel in the cattails and marsh grass. Gray clouds lay over the horizon but for the most part the sky was blue. Haley drank apple juice and slowly ate her toast. When she was through, I washed the dishes and we put on our swimsuits and our sweatshirts and loaded a plastic tote with towels and a blanket and sunblock and a couple of plastic pails and then we set off down the road to the beach. Here the ocean seemed a dark blue and the combers stood out stark and white. The sand was as rocky as I remembered it and Haley kept her flip-flops on while she walked down to the foam and let the sea rush up over her feet.
She screamed and jumped back. “It’s cold,” she shrieked. “It’s cold! It’s cold!”
I came up beside her and let the water wash up to my ankles. I guessed the temperature to be below sixty. Haley danced on the sand and shivered. “That’s the northern Atlantic,” I said and stepped back from the waves. “Not quite like home, is it?”
“N-o-o-o-o-o,” she chattered.
“Put your sweatshirt back on. It’s only June. It might be too cold to go in. But we can go beach-combing.”
We gathered up our pails and I reminded Haley to put sun-block on her face and her legs and the tops of her ears and feet. We made our way along the beach with our heads bowed, as if our walk was some extended meditation or prayer. Haley ran ahead and came back to me and ran ahead again. I couldn’t stop thinking of Chase, of how much he would love this, the plane ride and the beach, that view of New York City. And then I wondered if these were things that Chase would ever know. And then I shook my head hard as if I could cast those thoughts upon the water and reminded myself that this was a vacation, this was about giving Haley a normal girlhood. And yet I felt again how small our family had shrunk and how the two of us stood alone.
I watched the sand, looking for something special to hand to my daughter. The surf here was rough and most shells were crushed before they were cast up on the beach. There were the long shells of razor clams, pretty much intact, and the creamy yellow scallop shells I remembered from my childhood, and the occasional tiny jingle shell lying on the dark sand as luminous and pearly as inlay in a lacquered box.
I picked my way through seaweed festooned with little waxy golden balls, like Christmas ornaments, and past rubbery fronds of brown kelp. There must have been a storm recently for so much plant life to find its way to shore. I looked down the beach and here came Haley, running toward me, calling out to me.
“Look at this, Mom!” she yelled. “Look what I found!” She splashed through the backwash no longer worried about the cold and opened her cupped palm, where she held a tiny cache of perfectly smooth, perfectly oval, flat black rocks. It was as if they’d been polished by the sea and then given over to her, flawless and whole. And I suddenly recalled that Haley used to pick up rocks wherever she went and the door pocket in our car next to her seat was always full of tiny pieces of quartz or acorn caps or interesting sticks or tiny pebbles that Haley remembered for the places she’d found them. She’d point to a pale granite chip and say, “I found this on Grandfather Mountain that time we went with Chase.” When she said things like this, I got the feeling that behind every one of Haley’s tiny objects stood a whole story, as complicated and dense as memory.
“Let’s look for more,” she said, and pushed her wet hand through her blowing hair, which was beginning to work loose from its elastic. We spent the morning working our way down the beach and found black stones and gray stones and white stones, these last heavy as lumpy eggs. When we got back to the house and I made lunch, Haley washed the stones with water from the garden hose and lay them out in the sun on the front steps to dry.
EVERY DAY I WATCHED the answering machine for messages, for I worried that something would go wrong while we were out of town and John Umstead Hospital would not know where to find me. Chase was new there, and they were new to him, and I didn’t know how things worked yet. But I’d left our number with May, who said that was all I needed to do, and turned away for seven days. When the light flashed on the third day, and my heart stopped and I sucked in my breath, it wasn’t the hospital at all. Instead, my friend Vickie’s old friend Bryce, who lived on Nantucket all year round, wanted to take us out on his boat. The next day, we met him at the dock, with his wife and their baby son Ignatius and we loaded coolers of beer and sandwiches and ice for the fish we’d catch into the boat’s cabin and we strapped life vests on and Bryce explained that, when we were on his boat, he was completely in charge, and Haley nodded solemnly and took her seat at his direction. He winked at me and then piloted us up the channel and out past the lighthouse at Long Wharf and turned north along the coast until we felt the chunk-chunk-chunk of a different sort of wave as we pounded around Great Point, where the harbor ended and the open sea began. When we were opposite Brant Lighthouse, Bryce throttled down and let the boat begin to drift. He baited a hook and then handed a pole to Haley and showed her how to flick her wrist and send the line whizzing out over the water and then patiently wait for something to strike.
The Boy Who Loved Tornadoes Page 29