“It never seemed like he knew where he was or who we were,” the nurse said. The teachers had called her down to the room to see this, and it wasn’t something that looked right to her at all.
FIVE DAYS LATER, another call. Chase was lying on his mat when his body went stiff and he began to pound himself rhythmically in the chest. He didn’t respond when they called his name. Afterward, he slept for the rest of the afternoon.
“It was definitely a seizure,” the nurse said. “No doubt about it.”
WE TOOK HIM TO a neurologist who thought he might have a seizure disorder. She made an appointment for him at the hospital in Clifton Springs to have an EEG while sedated with Nembutal; they could do an MRI at the same time. She seemed concerned because Chase couldn’t hop on his left foot and had switched hand dominance. He had been doing everything with his left hand, but now seemed to prefer his right. We brought him to the hospital one morning and watched while Chase slid into the tube. But things went wrong and the test failed.
SO HIS DOCTOR AT the Strong Clinic ordered the EEG and MRI and told us Chase would have general anesthesia at the hospital in Rochester. I was on break from teaching so didn’t have to get someone to cover my classes, but Zip had to take off work, and I had to make arrangements for Haley, who I worried about with a worry that was with me like breath. I watched her closely, waiting for something to emerge, and she looked back at me with her thoughtful gaze and then grinned and giggled as if I were playing some sort of game whose rules only I understood and pushed off in her infant walker and scooted wildly across the floor.
I told myself she was safe at her day-care center and safe with Karen if we ended up having to stay late in Rochester. Karen worked in the infant room at the day-care center. She knew how to make a cake in the shape of Barney the Dinosaur. She’d come from Wyoming and she missed the West and talked all the time about how good it would be to get back home to Laramie, where you could walk fences for miles and never see another living soul. She was a big woman with big hands and a big round face and she kept herself busy. One night a week, she came over and stayed with the kids while Zip and I had an evening out. We went to the movies and sat in the dark and then found a place to have dinner afterward. We didn’t speak. When we got home, she always said, “Did you have fun?” And I’d look glumly at my feet and say, “Yup.” Once I found a twenty-dollar bill in the parking lot of the movie theater.
This time, I wanted us to be ready for the hospital. This time, I found a miniature toy operating room with tiny figures in green gowns and masks, and lamps on tall, skinny poles, and a patient with removable plastic bandages shaped to fit snugly on his head or arm or leg. I set the figures up on the kitchen table and showed Chase what it was like to go into the hospital. I showed him the Mommy and Daddy figures who would sit outside while the Chase figure lay on the table and the figures in the green gowns and masks took pictures of the inside of his head. I told him he’d be asleep and never even remember that part but his daddy and I wouldn’t sleep. We’d be right there waiting for him and we’d see him as soon as he woke up.
We drove up to Rochester in the early morning. Snow lay on the fields and black creeks cut through the snow and hawks turned lazy circles high overhead. Every so often, the highway crossed a gorge where a river gleamed dully below.
We checked in at the ambulatory surgery center at Strong and then an aide of some sort escorted us to a waiting room outside of the MRI center. “It won’t be long,” she said.
I sat in a blue chair in that dim room with Chase on my lap. Zip sat next to me. We didn’t say much. After a while, I opened the book I’d brought along and began the familiar rhythm of Go, Dog, Go! Chase looked away from me at anyone who came into the room. When the double doors opened and someone said, “Chase?” I stood up and carried him toward the nurse. I followed her down another hallway and told Chase that everything would be all right, we’d see him again before he knew it. He rode in my arms and by now was crying. The nurse stopped in front of another door and it opened and a man in a mask stepped forward.
“I’ll take that big guy,” he said and lifted him out of my arms but not before Chase cried “No, no,” and dug his fingers so hard into the back of my hand he cut me deeply with his nails. I went back to the waiting room and swabbed my hand with a tissue and then held a little square of tissue over the wound until it stopped bleeding.
The MRI was normal. The EEG was not. But it wasn’t abnormal enough for them to say, This boy has a seizure disorder. His doctor ordered Tegretol. Chase became violent and threw a table at a group of children at day care. We stopped the Tegretol.
I USED TO THINK I knew when Chase started having seizures and would describe, with great confidence, Chase’s first grand mal, when he was five. The problem was that even though I thought everything I said was true, and would have sworn to it at the time, and learned to speak with great authority to doctors about what I had seen, much of what I said was true only insofar as it was truthfully my perception; medically, it was not entirely accurate. Chase’s seizure at five was probably not a grand mal; it was probably a complex partial seizure. And I have no idea if it was his first. The neurologist who saw him in upstate New York was not convinced of a seizure disorder based on what she saw when he was five but she did allow as how failure to treat would let a seizure disorder “kindle,” if a seizure disorder existed. She said this in a letter to our pediatrician but she didn’t say it to us. Instead, she simply told us that medication was our choice and it could be dangerous but it could be helpful. She didn’t tell us one way or another what we ought to do.
TEN
It was hard to think about those early years now, about the seizures and the doctors who talked among themselves but didn’t talk to us. It was hard to think of misdiagnosis but it came to mind again and again, usually when I visited Chase and he told me that his shower was a gas chamber or that his nurse had killed him the night before.
Dr. B called and asked to meet with me, so early one stormy afternoon I walked up to the hospital on water-puddled sidewalks and then stood in front of the nurses’ station holding a dripping umbrella. The nurse took the umbrella from me when I signed in and told me it could be used as a weapon so they would keep it safe for me behind the nurses’ station. I raised the hems of my pants and tried to shake them out a little, the way a dog shakes after a bath. Just then, Dr. B stepped out from behind the station and nodded me toward the unit library and then closed the door behind us.
“Did you see Chase today?” Dr. B asked.
“Not yet,” I said. “I thought I would when we were through.”
He nodded. Dr. B was a man of acutely realized impassivity; even the staff commented on how little he showed his emotions. He was young with something of the appearance of a Boy Scout and I felt sympathy for him because I imagined he must have had to endure comparisons to Doogie Howser.
“I’d like to add another drug to Chase’s medications,” he said. “It should help stabilize his mood and retard the constant pacing.”
“All right,” I said.
He studied me.
“The nurses will ask you to sign a consent form, just as they have asked before,” he said.
“All right,” I said. “I can sign it on my way out.” I bit my lips.
Chase walked past us without looking into the library, head down, arms flailing, listing a little to one side as he always did.
“I met with the insurance review board this week,” Dr. B said. “They’ve certified Chase’s care again but they won’t do that forever. Have you found a place for him?”
I shook my head. “We’re looking but no one will take him.”
“Have you tried the mental-health side of things?”
I nodded. “And the developmental-disabilities side. The private providers out in the community don’t want him. He’s too complicated and they don’t have the staff and they keep telling me that they can’t offer any programs that are worthwhile.”
&
nbsp; “Well,” said Dr. B.
“I think they’re doing everything they can,” I said.
“I wanted to meet with you to find out how this side of things is progressing. We still have treatments to try and Chase will be able to stay as long as that’s the case. But sometimes these things don’t go as you’d like them to. I don’t want you to be blindsided.”
“I appreciate that,” I said. “But I don’t know what I can do when no one will take him.”
Chase walked by the library again and caught sight of me. He stopped and stared darkly through the glass walls, saying things in words we could not understand, and I remembered a night in New York City, years before, when I was still young, and an old man in the clothes of the homeless stood with his face pressed to the restaurant window beneath which I sat with my date, having dinner, and the man screamed and pounded on the glass and pointed at me and cursed me and the other diners turned to look at him until the waiter came over and pulled the curtains over the man’s face.
Chase raised his fist and pounded it weakly on the glass and the glass shivered and I began to stand up but then Pam came and carefully led Chase away.
I felt tears well and bit my lips again and again. I looked at Dr. B, who looked impassively at me.
“Can’t you help him?” I said. “Please, can’t you help him?” I wiped furiously at my eyes with the heels of my hands and then dug around in my purse for a tissue while Dr. B watched me without showing any emotion at all.
“I’m sorry,” he said. “We’re doing everything we can. In cases like these—”
“Cases like these?”
He nodded blandly while I wiped my eyes. “In cases like these,” he said, “where the patient is experiencing a significant psychosis that is refractory to treatment, we work to get him out of it as quickly as we can. Chase is experiencing an acute psychosis that has resisted our efforts to bring him out of it.”
“So it’s common?” I said. “This sort of thing? You see this a lot?”
Dr. B blinked. His hands were folded carefully together in his lap. “I wouldn’t say it’s common,” he said. “Usually one of the drugs will be effective. But there are some people who don’t respond to anything.”
“What’s wrong with him? Do you know?”
“It’s hard to say. His psychosis is very severe but he doesn’t quite meet the diagnostic criteria for schizophrenia. Maybe schizoaffective disorder.” He frowned. “You have to remember that we treat the symptoms, not the label, so it probably doesn’t matter what we call it. Unfortunately for Chase, his symptoms have been hard to treat.”
“But what does that mean?”
“You mean long-term?” he said.
I nodded.
He looked thoughtful. “The longer a patient remains psychotic,” he said, “the worse the prognosis. We don’t know why. Something about the processes that create the psychosis seems to cause irreversible harm. In the most severe cases, the person never really gets better but his symptoms might wax and wane some; at times, he might seem to be a little bit better, at some times he might seem a little bit worse.”
“And Chase?”
“He’s been psychotic for quite a while now and his symptoms are very severe. It’s extremely unlikely that he will get better. I’m sorry.”
I wept and Dr. B watched me weep and Chase walked past us again and looked sideways through the window glass but didn’t try to stop, just looked in at us with his suspicious dark face, and then stalked off toward the other end of the unit. I swallowed and tried to keep from sobbing and Dr. B. sat motionless before me. I struggled and he sat without expression and I thought of all the ways I had been unable to protect Chase from this illness that stood outside the rules and categories prized by all the specialists we’d ever visited, the pediatricians, developmentalists, psychiatrists, neurologists, neurosurgeons, geneticists, cardiologists, psychologists, occupational therapists, behavioralists, speech therapists, autism experts, and social workers who shook their heads and said, “It’s difficult to say how, exactly, but it’s clear there’s something different about your son.” Hospitals are ideas as much as they are places and, as such, develop expectations; in our common mythology, the fact of their existence suggests that it’s possible to achieve comfort, treatment, cure. If we’re lucky, we carry these beliefs without really even knowing that we have them. If we’re lucky, we’ll have no reason to test them and so have no reason to expose them as merely partial, merely beliefs, not even to ourselves.
I wiped my eyes and blew my nose. “What is this going to do to his life?”
Dr. B looked blank. “What do you mean?”
“Does it affect his life expectancy, anything like that? Or will he live a long time just like this?”
“For reasons that you can imagine, people who suffer severe psychosis tend to die a little bit early,” he said. “They don’t take care of themselves. They don’t have access to good medical care. They can’t report symptoms to medical personnel.”
“They wind up on the street,” I said angrily. “They live in tunnels and under bridges.” I furiously wiped more tears.
He nodded. “That’s sometimes the case,” he said. “But I don’t think that’s what will happen with Chase.”
I grasped at thin straws, steering for something that felt like hope. “Why not?”
“I think,” he said, “Chase will always be taken care of. He will always need twenty-four-hour, one-to-one institutional care.” His voice was plain and matter-of-fact, without a hint of anything that would give away what he felt.
“But please,” I said, with a fresh wave of tears. “Please. Can’t you help him? Please?”
AS CHASE GREW SICKER, I blamed myself in ways too uncountable to name. Somehow I had made a million wrong choices. I rehearsed these failings in my head and always came out on the short end of the stick. In every case, I was the parent. In every instance, I should have known better.
To bring Chase back so I could have another chance, so I would do better this time, so that things would be different—this was some of what I wanted when I said to Dr. B, “Please help him. Please.”
I MET THE HOSPITAL social worker in her office. I sat across from her on the sofa and she swiveled her chair away from the folder on the desk and looked at me.
“What are your plans for Chase?” she said.
“What do you mean?”
“You aren’t going to be able to bring him home. Where do you intend for him to live?”
“I thought he would come back to us,” I said slowly. But even as I said this, I knew it wasn’t true. The Chase that Haley and I knew wasn’t coming home. I’d told the local area workers that. But I had to keep telling myself that, in order to make it stick, in order to get myself to believe it. On the one hand, here was Chase before me, so transformed by illness that he no longer knew me as his mother and, on the other hand, here was my dream of Chase, the boy who loved to dance and read comic books and who always, in my mind, had a future.
Now the social worker shook her head. “He’s not coming home. That’s not going to happen. You need to find a long-term-care facility that can take him, a place with the right program, a place that knows how to take care of someone like him.”
It was very quiet. This was not like the rest of the hospital, not like the pediatric intensive-care unit, with its glass walls and humming, hulking machines, not like the pediatric postsurgical floor, where families used the microwave and the ice dispenser and got Popsicles and ice cream out of the freezer and nurses banged the metal doors of the linen locker and called to each other about extra gowns or pillowcases and rolled hampers on hard plastic wheels up and down the linoleum floor and every night at eight thirty the man with the squeaky sandwich cart came by and I’d buy Chase a bag of chips.
When I didn’t say anything, the social worker leaned forward and gave me a hard look. “He’s fine here for now,” she said, “but one of these days your insurance company is going to kick
him out and you’d better have a place lined up when that happens.”
“What about Chase’s Medicaid program? Won’t that kick in when the insurance company refuses to pay?”
“No,” she said. “Absolutely not. Medicaid will follow the insurance company. In your case, I think the review board for your insurance company is the same as the review board for Medicaid.”
“But they don’t even know Chase,” I said. “How can they make an informed decision?”
She shook her head. “It’s the system. Every so often, Dr. B meets with the board and argues that Chase still requires this level of care. So far, he’s been successful. But time is going to run out. You need to be prepared.”
I looked at my hands in my lap and felt my mouth quiver. The social worker asked me what I wanted to do.
“I don’t know,” I said softly. I thought about holding Chase in my lap when he was a baby and I thought about holding Haley in my lap and I thought about the way I held them together and the way I held them apart and I thought about going home to a family that was now just two, and I thought about this illness that had no name but that had nevertheless left us diminished and uncertain and changed forever. Then I cleared my throat and asked her for the hospital’s list of long-term-care facilities.
“We don’t keep any lists like that,” she said. “That’s for you and the area mental-health unit to figure out. You’d better do it soon. There’s no time to waste.”
“This just seems unbelievably unfair. He needs care. How can they just kick him out?”
She shrugged. “They won’t argue that he doesn’t need care. What they’re going to tell you is that he no longer needs this level of care. And then they’ll pull the plug.”
“Based on what?”
“They’ll review his treatment and his prognosis and they’ll listen to Dr. B’s recommendations, but in the end, it’ll be their decision. They don’t need to meet him or to meet you,” she said. “They’ll have what they need in Chase’s chart.”
The Boy Who Loved Tornadoes Page 13