The Boy Who Loved Tornadoes

by Randi Davenport

  Afternoon sunlight fell on the wall behind him and he blinked a little. Chase’s new social worker, Patrick, had joined us halfway through the meeting. Now he stood and crossed the room and adjusted the blinds so that he and Dr. A could sit without the sun falling across their faces and into their eyes.

  Dr. A had a new theory about Chase. He thought the normal EEG gotten upon admission to Memorial was very provocative, given Chase’s history of abnormal EEGs. “Sometimes,” he said, “when a person’s epilepsy is treated so thoroughly that he no longer seizes, and his EEG appears normal, the consequence is a huge upswing in psychotic symptoms. They call that situation forced normalization,” he said, “because the control of the epilepsy has resulted in an EEG that is forced by medication to appear normal. But the downside is the severe psychosis.”

  He spoke softly, in a gentle voice, and watched me carefully for my reaction.

  “So if we let Chase seize, his psychosis will resolve?” I said.

  Dr. A smiled and nodded. “That’s the theory, anyway.”

  “I don’t think I’m comfortable with that,” I said.

  Dr. A blanched. “No,” he said. “I’m not suggesting we let Chase have a seizure. What I’d like to do is look into this a bit more, maybe get Chase seen by his neurologist, consult on this as a possibility, make sure we’ve pursued every angle on this case.”

  After the meeting, Patrick waited in the hallway for me.

  “Do you have a minute?” he said.

  I nodded.

  We watched Dr. A walk back through the hospital, turn a corner, unlock a door, and disappear from view.

  “Let’s just go back inside,” said Patrick, and gestured back at the visitors’ room. I sat down and he sat across from me in a worn rocking chair. He was a slight man with longish hair and Chase had become convinced that he was his father and would not speak to him. Patrick told me that he’d been reading reports of my visits with Chase and he noted that I experienced a great deal of aggression from Chase during these meetings.

  “The thing is,” he said, “you can’t argue with psychosis. Think of the worst zealot you’ve ever met and how impossible it is to have a conversation with him because his beliefs are so entrenched. Chase is a thousand times worse than that. Your impulse is to have a conversation with him about family matters, but he’s operating in a world of beliefs that no longer acknowledges family matters. When you talk to him about these things, he just gets more hostile, more agitated. You’re just succeeding in getting him worked up. And then you have a visit that is not acceptable to you, either.”

  He leaned forward. “I’m going to ask you to accept that Chase doesn’t know who you are. This is hard,” he said. “But this is the way it is and this is the way it’s likely to be for a long time to come. If you can find a way to just sit with him and let him set the tone of the visit and just agree with the things he says, maybe he will come to like seeing you. You may never be anything more than the lady who brings him a sandwich once a week, but at least you can have a relationship with him as the lady who brings him the sandwich. You can have that relationship with him for the next thirty or forty years.” He paused and reached behind the sofa and found a box of tissues and handed it to me so I could wipe my eyes.

  “I know plenty of parents who have been where you are,” he said. “They’ve watched mental illness take their children. But the thing about Chase that’s different is that you and he have lost the primary relationship, the one between parent and child. The other parents I’ve known, their kids still recognized them. This is harder because of that. And it’s harder than death because it’s so unresolved.” He shook his head. “This is a very severe case,” he said, “and it’s hard to accept. But you need to accept it. Chase is going to need twenty-four-hour, one-to-one institutional care for the rest of his life and it’s probable that he will never know who you are again.”

  I sobbed once and wiped my eyes and looked away and then looked at him again. “I’d like to visit him,” I said and Patrick nodded.

  “I’ll take you up,” he said. “I think they’re expecting you. But I want you to remember what I said.”

  THE INSURANCE APPEAL had long since come back, indicating that Chase was still in need of acute care and, therefore, the case was dismissed, so I could have moved him back to Memorial. But I remembered the day he was brought to the ambulance and his anguished cries and his struggle to break free, and I decided that the only thing to do was to minimize the number of moves he had to make to the one where he moved from Umstead to BART.

  ONE SUNDAY EVENING I turned my car away from town and drove along a road that passed a house shaped like the spaceship in When Worlds Collide and a cemetery that stood alone on the top of a knoll and a Southern plantation – style house with a red tin roof and a new layer of gravel on the drive circling in front of the big front porch. I left the trees and deep woods behind and crossed the county line and looked to my left, at the big boxy apartments in the complex where Chase and Haley and I had lived when we first came to North Carolina. Then I turned right and followed a much smaller road down a hill and through a stand of hardwoods and over a bridge. Two deer stepped out of the long grass at the side of the road and stopped and stared at me. I turned at the iron gates and passed by the community garden and an open space filled with iron fencing and fireplace tools and metal parts of things now incomprehensible and found a parking spot on an embankment.

  The evening had turned cool and the sun was almost down behind the black trees, the sky just a glowing band of deep yellow, the dense blue of early night on the rise, and someone had already lit the fire in the round fireplace in the center of the gazebo and pulled the sliding-glass doors shut to keep the heat in and lit the candles below the stained-glass window that had been forged in the shape of the yin-yang sign. A man sat on a cushion on the floor with a harmonium before him and touched the keys and squeezed the bellows and a woman winched a round iron ring stuck with candles back to the ceiling now that the candles were lit and looped the pulley rope around a bracket and tied it off. Others arrived. A tall man with a gray beard brought a tabla and a mandolin. A woman walked down the path from the parking area playing a cedar flute. A man carried his guitar down the path and a woman walked three feet behind him and carried a bag of rhythm instruments. I sat on a meditation bench to the right of the man with the harmonium and waited with my legs crossed beneath me and my eyes closed and then the practice notes of the harmonium gave way to a chant about Krishna and the man who leaned over the instrument began to sing. I opened my eyes and watched the yellow fire curl and roll over the dark logs in the fireplace and listened to the song and listened to the voices of the others, who sang immediately and without hesitation. Another man began to beat a tom-tom, and another man finished unpacking his djembes and he, too, began to play. When the Krishna chant was through, the man at the harmonium let the bellows go and the air rushed out of the instrument and he picked up a rattle and began to sing about Wakan-Tanka and the others followed and a woman jumped to her feet and sang loudly and shook a rain stick with her right hand and turned her left palm upward and turned her face upward and beseeched the ceiling.

  The sky outside turned black and the iron lampposts standing in the woods turned off, one by one, and darkness closed in around us. I sang when the others sang and I paused when the others paused and I looked past the fire and out the big glass windows and into the black woods where no light shone. Then I stood up unsteadily and crossed the stone floor of the gazebo and reached into a cardboard box full of ground cedar and scooped up a handful and stood before the fire, the ground cedar scattering around me but still some held in my hand, enough for a hope, a wish, a prayer, and I held my hand to my heart and then held my fist over the fire and opened my fingers and the ground cedar sprang up as red and orange sparks and I asked for help and I asked for an answer and I didn’t know to whom or what or even if to anything at all I directed this supplication but I knew I should have do
ne more, handled things differently, made some sort of Faustian bargain, if such a thing could have been made, but I had not. Instead, I must have done everything wrong that one could do, or else we would never be here, and so I stood in a wooden gazebo while old hippies and true believers sang around me and asked someone or something to take our lives and make them right. Then I closed my fingers and sang some more and afterward walked up the path under the waving dark trees and drove home.

  I MET WITH THE director of Murdoch Center and with members of the Orange-Person-Chatham area unit who were responsible for finding Chase a place for long-term care. The director’s office was a wood-paneled place in the center’s administration building. When I parked my car out front, Linda was just stepping out of her black Honda. Inside, a group of people from Murdoch were waiting—an outreach coordinator, the center’s associate director, a client advocate. After a few minutes, Linda’s boss from OPC arrived, with a woman who worked on the mental-health side of things for the unit. We sat in chairs that made an approximate circle and I explained that I’d asked for this meeting because I thought we might be able to find a solution if we worked together. I explained that Chase was not doing well at Umstead and Umstead didn’t want him there. I explained that Umstead was unable to provide the services he needed. I explained that I was not getting any real help from Leonard Button’s office. I explained everything carefully and was careful to keep my voice even and measured. I told them I sought their collaboration, that as a team we might be able to do more than I had been able to do as a parent alone.

  Everyone nodded. Linda talked about the many meetings OPC had had about Chase and their many efforts to find a place for him. She talked about coordinating all of the materials for the applications, first at the place in Jacksonville, then at the PATH unit, and how Chase had been rejected by the place in Jacksonville and then reviewed by the admissions committee for PATH and was also rejected, but then was reviewed for BART and was accepted.

  The director of Murdoch talked about that admission being essential to anything we might do but, at the same time, he wasn’t sure what it was we could do, realistically speaking. What we needed was the one thing he couldn’t offer us, and that was a bed. He knew we were in a difficult spot. It was not a desirable situation. But he could not come up with a bed when a bed was not to be had. He asked me what sort of contact I’d had with Raleigh beyond Leonard Button’s office and I explained that I’d called the man who oversaw all of the hospitals and group homes and that had gotten Chase the consultations with Murdoch that were now in place. Otherwise my contact with him had not resulted in movement on a placement, so I’d written to his boss and, when he’d failed to respond, I’d written to the secretary of the division. She had also failed to respond. Right now, I was left with conversations with Leonard that were less than helpful, but I was trying to come up with more people to talk with and had contacted my state representative and my congressman. The congressman had said he could not do anything because this was not a federal matter; the state representative was looking into the situation from her office.

  When I was finished, no one looked at me. Murdoch’s director thumbed the papers in his lap and studied his shoes. Finally he turned toward me and said, “I think you might need a miracle. I’m sorry to put it that way, but it might be that this is what it’s going to take.”

  IN SEPTEMBER, THE HOSPITAL sent Chase to see his neurologist so he could further explore Dr. A’s theory of forced normalization. His neurologist met us in an exam room at the famous hospital where he taught and reeled backward when he saw Chase, for he had not seen him since the summer before Chase went into Memorial. “How long has he been like this?” he asked, and I explained. He nodded and shook his head and made murmuring sounds and looked aggrieved. Then he turned to Chase and said, “How are you, young man?”

  Chase rolled his lips together but didn’t speak. He patted his chest and then patted his thigh.

  “It’s sound communication,” he said at last and twisted his face at us.

  “Let’s sit down here on the table so I can get a look at you,” Dr. S said and Chase sat on the exam table.

  Dr. S examined Chase and then told me he had a note from a doctor at Umstead who was interested in his opinion on forced normalization. He said, “In my opinion, there is no such thing as forced normalization, or if there is, it’s a fleeting, short-term thing that can’t possibly explain the condition we find Chase in now.”

  Chase sat on the table and squinted at the lights and then turned to the ceiling vent and moved his lips.

  “There’s no chance that this could be behind the psychosis, then?”

  “No chance?” Dr. S said. “No chance? There’s always a chance of anything. But the point is that, in Chase’s case, that chance is so unlikely as to be practically nonexistent. Forced normalization, or so the theory goes, explores the relationship between epilepsy and psychosis and suggests that the more aggressively you treat the epilepsy, the more severe the psychotic symptoms become, and if you let the epilepsy alone some, the psychotic symptoms will abate. It’s never been proven and is highly controversial. I don’t think it applies here at all. This is something else.”

  “What?” I said.

  “Oh, that I couldn’t tell you,” he said. “That’s not something I’d be able to hazard a guess on.”

  Chase said something and Dr. S and I both looked at him and I said, “Chase?”

  Chase began muttering and then he said something about the executioner and the nailers. He patted his thigh.

  “It’s okay,” I said. “We’ll be done soon.”

  We waited but Chase didn’t say anything else. Dr. S shook his head and came across the room and clutched my hand in his. “We’ll get him back for you,” he said urgently. “Don’t worry. We’re going to get him back.”

  But he didn’t say how.

  AT THE HOSPITAL, Dr. A ordered an increase in Chase’s Clozaril. Then he ordered a swallowing study to make sure that the reason Chase was losing weight had nothing to do with his ability to eat. One morning Chase surprised everyone by saying in a loud, clear, strong voice, “I’m ready to be discharged to Murdoch now.” He said it twice. When nothing happened, he sat on a sofa in the dayroom and slipped into his fog. Two days later, he arrived sobbing at breakfast convinced his mother had been killed. Right after that, he began to tell the psychiatrist that Little Chase lived inside him and caused him to do bad things and that was why he’d been sent to jail.

  I RARELY WENT INTO Chase’s room at home, for each item in it reminded me of Chase before he got sick. After I’d carefully boxed up all of his belongings and stacked the boxes in his closet with the labels facing hopefully outward so I could easily put my hands on anything Chase might ask for, as if he might ever ask for anything again, the room still seemed to be his, and was therefore in its emptiness too big a reminder of what the emptiness had replaced. I couldn’t look at photographs, either, or at the videotapes we’d made when Chase and Haley were young. I wept at unpredictable times and could not stop myself. People asked about Chase but then, when I could not tell them that he was getting better, in acts of kindness that cut through me like a bitter sweetness, stopped asking. I met new people who had never known Chase and did not know that I had two children and thought that when I said, “My family” I meant just my daughter and myself. I grew silent about the facts of my life, for I could not imagine saying, You don’t understand, we were once a family of four and then some strange illness came among us and first took their father and then, in the most horrible way, took my son, and Haley and I have tried to figure out how it is that we are a family still, with half of us lost to some kind of darkness so truly impenetrable by light, so truly unknown, so utterly mysterious—for what else could be the definition of darkness but the absolute absence of light and knowledge?—that it doesn’t even have a name.

  I wanted to be like the mother in the film Lorenzo’s Oil and find a cure that doctors had overlooked.
I scoured the Internet for syndromes, relatively common things at first, and then for more rare and unknown disorders, things locked into Chase’s mitochondria or his metabolism or his dopamine receptors. I looked for genetic conditions and I tried to match his symptoms to the symptoms of other children in other families. I read about complicated seizure disorders and illnesses of copper deficiency and untreated PKU. I looked into syndromes so rare that fewer than fifty people were known to have the illness, and of those fifty, thirty-eight were from Norway. I believed the diagnosis of schizophrenia and then I didn’t. I believed the diagnosis of autism and then I didn’t. I believed the diagnosis of schizophrenia and autism in one person, a condition that was said to be nonexistent, unknown, impossible, and then I didn’t. I called the psychiatrist who’d treated Chase while we still lived in the Midwest and explained what had become of Chase and asked him if he had any thoughts about his early diagnosis. He told me he remembered Chase well, for it wasn’t every day that you saw a child like Chase, and he was very sorry to hear of the current state of things, and yes, he’d used the atypical autism diagnosis but secretly had worried that what Chase really had was that rarest of all mental-health catastrophes, true childhood schizophrenia. He’d avoided that diagnosis because there were other ways to explain Chase’s symptoms and he preferred those to the childhood schizophrenia label because the prognosis was so grim, so dire.