I’d been told to press the button on the machine whenever Chase showed signs of the behavior I’d described. All that afternoon and the next day, we read stories and listened to music and ran Chase’s wooden train around an elaborate track it took us two hours to build. I pushed the button eight or ten times but wasn’t always sure; sometimes, I thought I should have pushed it when I didn’t, and sometimes I pushed it when I wasn’t sure I should, to make up for the times I didn’t push it when I thought I should have. The difficulty came in trying simply to record what could be nothing more than a fleeting expression on Chase’s face, to make a swift and certain determination that this was a seizure while that was merely a moment of boredom or thoughtfulness or sleepiness.
It was peaceful in Chase’s room. Our neighbors in the apartments around us were off at work. I’d dropped the blinds against the relentlessly sunny days of North Carolina, so it was cool and dim. When we tired of books, we talked about how things were going to be in the future. I was going to get a job and then we would buy a house and we’d have a pretty good life, with good food on the table and trips to the movies or museums. We could go to the beach or maybe drive out to the mountains to see snow. Chase wanted to play baseball and I said that was surely something he could do, once we got a little more settled. He asked about his dad, when was his dad going to send the birthday present he’d promised, why hadn’t it come yet? I reminded him that his birthday wasn’t until November and changed the subject.
Our conversations weren’t your average conversations. Chase never stopped talking or asking questions. He didn’t give up on the thing that was most in his head. You could pull him off the subject and then be blindsided by the same questions three minutes later. When he played with his trains, he repeated long stretches of story line from his Thomas the Tank Engine videos. “Percy doesn’t like James when James is cheeky,” he’d say and then push the train along the track until it came to the water tower. That first fall in North Carolina he was stuck on Spider-Man and I drew comics for him that featured pictures of Chase with his pal Spider-Man as Chase learned to wait patiently for the school bus, not to talk to strangers, or how to brush his teeth. In these comics, Spider-Man always said encouraging things and the last panel would feature Spider-Man with his arm around Chase’s shoulders.
When Haley came home from school that day, we met her at the bus and Haley stared at Chase’s white gauze hat and said, “What’s that thing on Chase’s head?”
“He’s having a test,” I said. “The doctor wants to see how Chase’s brain works.”
She touched the top of her own head. “Does it hurt?”
“Not a bit,” I said. “Chase’s fine.”
IT ONLY TOOK a few days for the EEG report to come back. The long-faced neurologist called me up with the news. He almost couldn’t believe it himself. Why, he would have staked his reputation on a different outcome. All in all, it was the darndest thing. Chase was having seizures night and day. Petit mals, if he was any judge of things. He needed to be on an anticonvulsant. If I’d give him the name and number of a pharmacy, he’d call in a prescription. “We’ll give him the best drug for this sort of thing,” he said. “That’ll fix him right up.” And then if he could see him back in three months?
THAT WAS WHEN I knew without any doubt that Chase had seizures. Before that, he’d had episodes that looked like seizures, that might have been seizures, that a neurologist in up-state New York had failed to tell us were seizures. The signs were subtle: staring and eye-rolling, or moments of eyelid fluttering, or instances of chewing that seemed involuntary, automatic, his face motionless except for the grinding motion of his jaw. Everyone we consulted told us they couldn’t be sure.
So I had no idea when they’d begun and could only think of the years they had gone undetected, untreated.
By the time we’d lived in Chapel Hill for a year and Chase was almost twelve, he still had these little seizures but he’d also graduated to the kind of seizure most people are familiar with, the big one, the tonic-clonic or grand mal, the Mount Vesuvius of seizures, complete with a crash to the ground, loss of consciousness, whole body convulsions, a long period afterward of dazed confusion. Other times, he’d simply fall to the ground, lose consciousness, and his arms would jerk; this was the funneled whirl of a complex partial seizure. Many people with petit mal or absence seizures go on to develop grand mal seizures but the neurologist who first diagnosed Chase’s seizures hadn’t felt any need to mention this, perhaps because it was impossible to predict, perhaps because there was no way to know which child would be the child in which seizures would take hold and bloom.
That neurologist also led me to believe that epilepsy just wasn’t that serious. He taught me to be casual, dismissive. Seizures looked worse than they were. Seizures were scary but you could get used to them. They didn’t hurt the person who had them although sometimes he could be hurt when he fell and that was really the thing you had to watch for. But nothing in Chase’s brain would be fried, for example, and nothing would go wrong. People with epilepsy could lead normal lives if their seizures were well controlled.
When the teachers at the middle school called me at work and said Chase was having petit mal seizures that wouldn’t stop and they’d called the ambulance, I felt irritated at their overreaction and asked them why they’d called an ambulance. I patiently explained that the seizures couldn’t hurt Chase and they should just let him rest someplace quiet and did they really think an ambulance was necessary? Did they really think I needed to come get him? It wasn’t like this was something new. It wasn’t like anyone could really do anything about this. Yes, I’d call his neurologist and let him know. Perhaps we could change the dosage on his meds.
I would call and leave a message for the neurologist, who would call me back hours later or sometimes the next day. “We can increase the dose,” he’d say. “Is that what you want to do?”
He asked this as if it ought to be my decision, as if I knew anything about seizures, as if I knew the options and could make a reasonable decision. Sometimes he’d suggest that we try a different medication but by the time we got to his office for an appointment, that suggestion had evaporated. Sometimes he’d ask if Chase had ever had an MRI and I’d tell him yes, once, when he was five. The neurologist would look thoughtful and say, “Maybe we ought to do another.” But we didn’t.
One day, when Chase was thirteen, the school called an ambulance when he was seizing and the teacher put the EMT guy on the phone with me. “Do you want me to take him to the hospital?” he asked. “It looks like he’s been seizing—petit mals, I guess—for quite awhile now, maybe thirty minutes, according to his teachers. Do you think he needs to go to the hospital?”
“Is he in any danger?” I asked.
The EMT guy sounded surprised. “He’s been seizing a long time,” he repeated.
“But it’s just petit mals?” I said.
“I think so,” said the EMT guy.
“Then I think we should just let him rest until he gets through it,” I said.
No one said the words status epilepticus to me, but they do appear in Chase’s medical record. Later, when I learned what status epilepticus was, the very dangerous constant seizing that can lead to death, I stupidly thought it only applied to someone having a grand mal seizure. I didn’t understand that it also applied to petit mals and felt relieved, quite wrongly, that Chase had never experienced that.
SEVENTEEN
In April, Chase had been in the hospital on the acute-care stabilization unit for five months. He wasn’t anywhere close to being stable and the staff told me that he held the record for longest stay. It was a dubious honor. When Dr. B and Dr. LJ couldn’t agree on what to call what was wrong with him, we called a famous autism expert at Yale University to consult on Chase’s case.
He told us he’d read the files with great interest. In his years of practice, he’d seen maybe two kids who looked like Chase. One was a twelve-year-old girl with an u
ndiagnosed seizure disorder. Her symptoms cleared when her seizures were treated. “But,” he said, “I see that Chase has already been treated with anticonvulsants.” Dr. B and I both nodded and then Dr. B said, “Yes.” He leaned forward a little when he said this, as if he were afraid the speakerphone wouldn’t pick him up.
We sat in Dr. B’s second-floor office, where a narrow window overlooked the hospital driveway.
“The other case,” the famous man said, “was a boy of fifteen who became severely psychotic and stayed that way for about eighteen months. Then the psychosis just lifted. His parents started him on Clozaril and that may have helped but it was hard to know for sure.”
“Is he better now?” I asked.
“He still believes he’s Jesus in the Garden of Gethsemane,” he said. “He does some minor carpentry work for his father’s construction company. His psychosis has largely abated but he isn’t entirely lucid all of the time.”
“He lives at home?”
“Yes. It’s extraordinarily difficult for the family but I think they manage. His mother doesn’t work so she’s able to be with him when he needs to be at home, on the days he can’t work.”
“Are you aware of any facilities that might be able to help with a child like that?” I asked.
There was a long silence. Across the miles, I could hear the man shifting in his chair. At last he said, “I think that will be very difficult to find. It’s the great challenge for families, no matter where they are. Finding services. Getting the help they need. I wish I had better news for you.”
“Do you have any thoughts about what we might try with Chase?” Dr. B leaned forward again as he said this. His office lacked decoration save for the framed portrait he kept of himself standing with his arm slung over the shoulders of a pretty woman; she held hands with a pretty little girl. All three of them were dressed in white clothes. When he leaned toward the speakerphone, I could see the portrait clearly.
“Clozaril, if you haven’t already,” said the famous man.
“We’ve just begun that,” said Dr. B.
“It might be well worth your while to do some video EEG studies,” said the Yale doctor. “Fully evaluate what might be going on with his seizure disorder. I don’t know that this is going to be the cause but it would be worthwhile to explore this.”
“Anything else?” said Dr. B.
I heard the man’s chair creaking again. “I think those would be my avenues of choice,” he replied. He paused. “Sometimes,” he said, “there are no explanations. Sometimes psychosis merely descends like a curse from God.” He cleared his throat. “If anyone tells you that he knows how this is going to turn out, don’t believe him. Chase is a population of one. No one has any studies on which to base predictions. No one has any idea how things are going to go for him.”
“Thank you,” I said. My voice sounded dull and flat.
“I’d like to know how this progresses,” said the famous man. “From time to time, I’d like to hear how things are going.”
“I’ll be glad to let you know,” I said.
“We’ll stay in touch,” said Dr. B.
When we hung up, we sat without speaking. Dr. B looked out the window and then looked at me. “That was helpful, if merely to confirm that we’re on the right track,” he said.
I nodded. “What about video EEG studies?” I said. “Are those a possibility?”
Dr. B sat in his chair in absolute stillness, absolute neutrality. “I don’t think so,” he said.
“Why not?”
“When Chase came in we did an ambulatory EEG that was completely unremarkable. No findings of any kind. Based on that test, further EEG testing is unwarranted.” He paused. “Even if it were warranted, how would we do it? He’d have to go to the sleep studies clinic for a week. How would Chase manage at the sleep studies clinic for a week? He couldn’t do it. And we don’t have the staff to send with him to maintain him for twenty-four hours a day there for the week he would need.”
“What about a portable unit of some kind?”
Dr. B looked away from me. Then he looked back. “Too expensive,” he said, “given that I don’t believe it’s warranted at all.”
It was a gray day, without wind. When I crossed to my car I wondered how long the weather would hold. From the top of the parking deck, I could see into the hazy distance in the east, where clouds flattened in a great bluish wash along the horizon in advance of rain. Behind me lay the hospital and the campus and the libraries and many people who knew a great many things but no one who knew anything conclusively about Chase.
Years later, Dr. LJ described Chase’s psychosis and his loss of skills as a crossing of the Rubicon and I understood him to mean that this time in the hospital marked an irretrievable final action, from which much return was unlikely. In this, he seemed to be in agreement with Dr. B, even if the two of them could not agree on how to name the thing that caused that river to be crossed.
FRIENDS WHO BELIEVED intensely in alternative therapies offered me cures. In each offering, kindly intended I have no doubt, I felt nothing more than an accusation, as if I had failed to do enough, as if I had caused this in Chase and now must find a way to cause him to be restored. The theories were boundless: his nutrition was bad and he needed a different diet; he had leaky gut syndrome, like everyone with autism and schizophrenia; I was the dupe of the big drug companies, who didn’t want me to know about cures; he should eat no dairy, no wheat, no sugar; he should eat macrobiotic foods, fast for a month, take Chinese herbs, do acupuncture, have a massage; he should seek a shaman for soul retrieval. He needed yoga, a course in drumming, a faith healer, and for me to accept that he had chosen this path for himself.
ON A COLD AFTERNOON in April, when the sky outside the hospital was the color of dirty snow, the PATH unit’s advance team paid Chase a visit. The weather felt northern and familiar and unlike a spring day in Chapel Hill. The insurance company was getting edgy. Its representative felt that five months was too long for a teenage boy to require acute care and said so fairly regularly. No one from the insurance company came by to see Chase or make an assessment based on physical findings but instead held hearings where Dr. B argued that Chase was still acutely psychotic, still in need of stabilization, still in every way conceivable eligible for care. I could often tell when Dr. B had had one of these conversations, for he’d walk over to Five South from his office and stand at the nurses’ station and watch Chase for a long time.
Jim, the PATH psychologist, was a man close to my age; he’d cut his gray hair in a stylish fashion and wore a button-down shirt with his pressed jeans. When he shook my hand, his manner was easy and evenhanded, as if he’d just happened to stop in to see Chase, and there was nothing odd to be seen here, nothing unusual in Chase’s situation. Sandy was the unit manager. From where we sat in the library, we could see part of the dayroom. I watched Sam, the male nurse assigned to Chase, and Dr. B step from behind the nurses’ station with their clipboards in hand and walk over to Chase. He wore his dark gray hoodie and his dirty black parachute pants and his hair fell down over his eyes. Sam put his hand on Chase’s arm and Chase looked at Sam and then looked over at us and took a step toward us but Dr. B. said something and Sam patted Chase on the arm and Chase stopped and stared over at us before moving off down the hallway toward his room.
We reviewed Chase’s history, with reports from Dr. B. and the nursing staff, and from Catherine, who was able to talk about all of the ways in which Chase was unable to do anything at the hospital school. I pointed Chase out to Jim and Sandy. They watched as he walked by the window. He tapped his hand against his leg. His eyes were sunken and dark and he stopped outside the window to squint at the ceiling and recoil a little. There was an air vent there and he stared at it and then lifted his hand and cupped it next to his eyes. We could hear the hissing sound even with the door closed. Then he walked on.
“That was interesting,” said Jim mildly.
“Lasers,” I sa
id.
“I assume he’s on medication?” Jim looked at Dr. B.
Dr. B nodded. “We switched him to Clozaril about a month ago.” He looked down at the folder in front of him. “He’s just now at a therapeutic dose. He seems to be tolerating the drug well.”
“How effective is the medication?”
“Chase has been on the unit for as long as he has been because he has been refractory to treatment,” said Dr. B. “We pursued trials of five other antipsychotics before introducing the Clozaril. It might be too soon to tell but we think it’s having a beneficial effect. His levels of agitation have decreased somewhat, and his paranoia has subsided to some degree, and the staff reports moments of lucidity during the day.”
Sam said he had heard Chase singing in his room and when he brought the radio in so Chase could sing some more, Chase had talked with him for a minute or two about U2 before he slid back into talk about the death cells on the sixth floor.
“And this represents a gain?” Jim asked.
Chase walked by the window again. This time, he stopped and leveled us with a weird look that was both distant and prying.
“I think the staff feels these things demonstrate improvement,” Sam said.
Jim looked at me. “Do you feel it’s a gain?”
“Yes,” I said. “But he still doesn’t know me. He still thinks his food is poisoned. When I come to see him, he’d still rather hit me than sit next to me. It’s like you catch a glimpse of the old Chase, but then it’s gone again.”
“He doesn’t know you?”
“He thinks his real mother has been kidnapped by terrorists and is being held hostage somewhere and that’s why she never comes to visit him,” I said. I swallowed hard and told myself that I would not cry during this meeting. But it was hard to keep that sort of promise, especially when we had to walk through all of the facts of Chase’s illness, and each one hit me anew, as if I had not watched him deteriorate but was confronting all of this for the first time.
The Boy Who Loved Tornadoes Page 21