Thread by @NancyRomm

MY DAUGHTER'S HEAD

There were no obvious signs at first—more that she was tired, then spacy. This was a shift. Since turning 13, she had experienced none of the expected personality shifts; no back talk, no tantrums.

She was still a sweet and loyal kid, if one who spent more time on the phone and used words I did not recall teaching her. Sure, she was tired after school, but she’d always been. What happened now was more than afternoon tiredness.

I’d pick her up from the bus at 4:30 and she’d sit in the car as though she were a zombie.

At home, she’d slide into the kitchen banquette to do homework, as she had every day after school since she was seven, but there was no pep to her; she’d sit as though she were an old person resting after a long day.

I’d be at the stove making dinner and instead of her chatter or questions about math, there’d be silence, and I’d see her staring not at her books but into space, her lids heavy, her mouth slack.

At first I thought maybe she just needed some downtime—seventh grade is a big step, plus the whole social thing—so I suggested she take a rest.

I’d check on her 40 minutes later and she wouldn’t be in her bed but down the hall in mine, leaning against the pillows, her eyes glazed. Was she sleeping, perhaps, with her eyes open? I’d whisper her name, but she wouldn’t respond.

One time, when she came down to dinner, I asked if she’d been sleeping with her eyes open. She thought this was funny, and said, “How would I know, Mom?” Then one morning I couldn’t wake her up. I shook her shoulder gently, then harder. She was limp and unresponsive.

I called her dad. Nell was at the breakfast table zoned out by the time Bill arrived. I was a mess. I pulled him to the far side of the kitchen and told him I’d called the doctor; he said to bring Nell in and that he’d scheduled an MRI. Bill looked at our daughter.

I could tell by the way his brow thickened that he thought something was really wrong. He knelt in front of Nell and asked how she felt. Sleepy, she said.

He lifted her eyelids, felt her forehead and cheeks, and then he said something that frightened me, because he has better instincts than anyone I know: “I don’t think it’s something the doctors will be able to help.” They did the MRI. They did a CT scan.

What she had was Disassociative Cortexual Disorder, DCD. I’d never heard of it. “I’m not surprised,” said Dr. Blank, the specialist we’d been sent to. He was a little younger than me, maybe 35, with dark hair combed straight back and a straight nose.

To be a good-looking surgeon in Los Angeles, I thought; what power. I didn’t trust him. “I’ve actually never seen it before myself,” he said. “So then how do you know she has it?” I asked. “She has all the symptoms.”

He clipped the images of my daughter’s head to a light board. “And she’s the right age.” He indicated with his pen the wiry fissures on the pictures of the inside of my daughter’s skull.

“We see the onset at the same time when schizophrenia starts, usually late teens to early 20s.” “She’s only 13,” I said. “That’s ballpark,” he said. “Are you saying my daughter is schizophrenic?” A beat started in my throat that made it hard to hear.

“She could be,” Blank said, looking at the image. “But not likely, if we operate.” Operate? “Operate on what?” I said. “This area.” He pointed to a lower portion of her brain. “You can think of it as a reconnect.”

“I don’t want to think of it in metaphorical terms; I want to know what you’re going to do to her.” Blank sighed, as though this were all taking a little too long.

“We need to sever the pre-cortical pas- sage from the brain, to stop the transference of information, and then reattach it. It creates an interruption of brain function that realigns the whole thing.” I was on the verge of whiting out. “How dangerous is it?” He sighed again.

“Mrs. M., all brain surgery is dangerous. That is what we do.” What did this mean? “I’m asking you, Doctor Blank, are you going to kill my daughter?” Blank looked pleased that I’d asked, because then he could tell me. “We are not going to kill her,” he said.

“But we are going to make her different.” I sat in the car thinking about what Blank had said: that afterward, my daughter’s personality would be changed; of this he was almost certain.

She would remember us but her emotional makeup—what she thought was funny or sad, how she laughed, what she respected and how she engaged the world—all these would be altered. They would rob her of her, and give me back her body.

Her father and I sat in the car, in the hospital’s below-ground parking garage. “I don’t think we should do it,” he said. I didn’t know what to do. What were our options? Bill told me he wanted to look into a few things.

Within two days, my daughter was bed-bound, barely speaking. I brought her glasses of orange soda, which she drank with a straw. On the third day, Bill came with two friends. They were both Native American, like Bill, and, also like him, more than six feet tall.

I knew Josh; the other man I’d never seen. “We’re going in to see her,” Bill said, and the other men nodded at me as they followed him into my daughter’s room and closed the door. After 10 minutes I couldn’t take it anymore and went in.

They were burning sweetgrass, waving the smoke over Nell and praying in a Native language. I stayed by the door. Bill came and stood next to me. “They think her spirit is being robbed,” he said. How could I argue with this?

This was exactly what had been happening, and also exactly what the doctor said he was going to do. “We may need to take her out of state.”

“What do you mean?” “We’ll see how it goes today, but if she doesn’t get better, I’ll take her to Acoma, and we’ll try to cleanse her there.” I stayed up late on the Internet looking up DCD, of which there was a nauseatingly small amount of information.

The best site I found was from Highlands Medical, in Aberdeen, Scotland. There was apparently a small town where two boys and a girl in one family had been afflicted. The first boy was operated on and came out a vegetable. The second son died.

When the daughter was afflicted, the father, a farmer, took her out to a barn and hit her in the back of the head with a shovel. The girl not only survived, but when she came to 48 hours later was no longer afflicted with DCD.

This was in 1964 and she was still living, though, understandably, the medical community did not tout her case as a cure. I stood over my daughter’s bed. Her 14th birthday was the following week, and it appeared she was going to sleep through it.

In the corner of her room was an aluminum baseball bat. I picked it up. It was not as heavy as a shovel. I saw my daughter’s head on the pillow, her mouth open, her eyes lazily closed; she was sleeping. I couldn’t hit her in the head.

Even if it meant saving her personality, I couldn’t do it. I sat at the banquette for two hours, me and a bottle of vodka, and thought how some parents might not have minded being told their teenager could have a whole new personality.

Enough of my daughter’s friends had in the past two years turned surly, or into liars, or shrill and superficial. My daughter was none of these. She was kind and generous, goofy, creative.

She was devoted to her father and me, and would sooner set her hair on fire than hurt a friend. This was what we would lose. We. Was it up to me, to her father, to save her? Did what we wanted matter? Were we being selfish to want the daughter we had?

Wasn’t it about her life and trusting that, whatever kind of person she became after DCD, she would not merely survive but thrive? Did I not owe her a chance to live?

I let Bill take her to Acoma, where we climbed a mountain, my daughter in a sling gurney carried by two men I did not know. Two small women walked on either side of me; every once in a while the backs of their hands brushed the backs of mine. No one spoke.

We got to the top of the mountain at 10 p.m. People sang and prayed and waved eagle feathers at the moon, and then we sat in a circle around my daughter. At some point, I was handed a Styrofoam cup of something.

I wondered if it was some healing elixir, and if I were going to be asked to sprinkle or feed it to my daughter, and if—not being an Indian from Arizona but a Jew from New York—I could do this effectively, but it turned out to be hot coffee. We came down at dawn.

My daughter was awake and wanted to get out of the sling and walk, but the man who seemed to be in charge wanted her to rest. I held her hand and walked alongside the gurney, my daughter’s eyes shining as we passed through a pine forest, with birds in full song.

“It’s pretty,” I said. “And smells good,” she said, and closed her eyes. What will we give to keep our children as we want them? We came back to Los Angeles, and while Nell seemed content, she was no better.

She managed to get to school, but by 11 in the morning I was called and told to come get her. She’d fallen asleep at her desk. Another CT scan revealed further dislocation of the cortexual line. “Think of it as a plug hanging from an electrical socket,” Blank told me.

Nell was in the outer office, slumped against her father. “It will eventually fall out.” I thought I’d vomit when I heard this. My daughter’s plug would fall out—and then what? I did not know what to do. Why was I being asked to make a decision that would rob me of my child?

Bill said I was the only one who could make it, but I argued that just because I’d given her life did not give me the right to alter her life in this way. It was a pointless conversation.

Bill had done what was in his power to do; now it was up to me. I stayed on highlandmedical.org until 1 in the morning, and then I got the shovel from the garage. I stood over Nell’s bed. I knew my swing would be feeble, so I practiced once.

I brought it down the way a golfer lines up a shot at the tee. I did this three, four, five times. Then I brought the shovel back and up, and my daughter opened her eyes, and I swear she looked at me as if she was fully herself, her eyes very bright.

Then time slowed and it appeared she had not seen me. She just turned over and showed me the back of her head. I thought I’d have a hard time carrying her from the bed to the bathroom, but it was as if she was four years old again; I cradled her easily.

I laid her on the tile floor. I had no idea whether she was unconscious or in that nether region she’d been in for the past two months. Her head was in my lap, and I talked to her as I cleaned the wound.

It was about as long and deep as a biscotti, a crescent in the shape of the shovel’s edge. It bled for a while, and then showed white within her black hair; a clean cut. As I swabbed it I told her stories about herself, how we’d lived, just she and I, for 12 years.

I sang her “her” lullaby, many times. What else could I do? She was not waking up. I stayed with her on the floor for I don’t know how long, until my legs beneath me were numb. Then I gently laid her head on the bathmat and looked at her.

So long, almost as tall as me, her hipbones protruding through the pink nightgown. What did I do with her now?

Could I phone Bill and say, “I’ve just hit our daughter in the head and I’m hoping it’s worked but right now I’ve run out of strength and need you to get her back in bed”? Instead, I got two blankets from the hall closet and curled up beside her, my head beneath the toilet bowl.

I woke up at 5 in the morning. Nell was still asleep. She must have bled a little from the wound, because when I lifted her head from the bathmat, the dried blood crackled. I got her head and one arm over my shoulder, which is when she started to moan.

I leaned her against the wall; her eyes were closed. She kept up the wordless moaning and I became terrified; perhaps I’d knocked the plug out and she was just an animal now, a vegetative mass. I began to say her name over and over.

“My head hurts,” she said, and I began to cry. She still had language! I held her body to mine and got her in bed. I called Dr. Blank and said that Nell had fallen in the bathroom and hit her head and was complaining of pain—what should I do?

“This won’t change the scheduling of the operation,” he said. Was he an evil man? How could he be so sure? I told him I’d be taking her for a second opinion, and not to call me anymore. I got in bed next to Nell; she seemed to be asleep again.

I looked out her window—always a nice view, of a fig tree, out of which two months earlier an intricate bird’s nest had fallen. Nell had brought it in the house, and we’d put it in the center of the dining table, where it was still. I touched Nell’s cheek and told her to sleep...

…if she needed to, and remembered how she and I had leaned our elbows on the table and examined the nest and marveled at all the work it took, how one bird had made what must have been hundreds of trips carrying one twig each time, until the nest was whole.

“How do they know how to do it?” Nell had asked, her finger touching a piece of red thread that wound up as part of the whole. “It’s instinct,” I’d told her. “They just do.”