Middlegame

It was a careless, not even reckless but simply unguarded move, not in the least like her. She was never unguarded in her play. I studied my daughter’s face, observed her brown-eyed focus, recognized it, having seen and marveled at her intensity so many times before. Her gaze was bright, aureate, penetrating, yet this unmindful move seemed somehow important. Easily, clearly a mistake of inattention, one that I would have made over and again, but it was sufficiently uncharacteristic for her that I actually asked if she was certain about making the move. It had been a couple of years since I had put to her such a question and she was puzzled by it, or at least mildly indignant. She watched as I captured her knight with a hardly difficult-to-spot bishop.

“I didn’t see that,” she said.

“Clearly.” I held her captured knight in my palm, not wanting to amplify the event by placing it on the table. “Not like you.” She had for a year been a better, much better, chess player than I was. “Anyone can miss something. Take me, for example. I employ such nescience as a tactic.” 

She didn’t look up from the board.

“Are you OK?”

“I think so,” she said. She glanced at me, gave the board another steady look, and then resigned, removing her king rather than toppling him, as was her custom. “What the hell is nescience?”

“Tossed it out there just for you.”

“Nice word.”

“Glad you like it.”

A bad mark on Sarah’s social studies test prompted her to confess that she was not seeing all that well. The whiteboard was a blur. Pages as well. It was an easy enough problem to address and to accept. My wife had worn glasses since early childhood, so it was no surprise to discover that Sarah had her eyes.

The appointment with the eye doctor was on a Wednesday. I didn’t teach on Wednesdays, so I took her. The doctor was a pleasant young woman who hummed a lot, more and more as the examination went on. I asked her why she was humming. She didn’t answer. She had my daughter stare at a distant farmhouse.

“Is this better or worse?”

“Worse.”

“Better or worse?”

“Same.”

“Now?”

“Same.”

“How about now?”

“Same.”

She moved my daughter and took another look at her eyes through the phoropter. To me the doctor said, “I can’t prescribe glasses because I can’t figure out what’s going on. She seems to be both near- and farsighted and neither.”

“What are you telling me?”

“Nothing. I can’t tell you anything. I think she needs to see an ophthal­mologist. I can’t find anything wrong with her eyes.”

In my dream, a dream that I did not trust from its onset, probably because of the furnishings, I was not myself but instead someone who knew me well and pretended to be me. He, as me, arrived home to sit at the dining room table with a woman who pretended to be my wife and my daughter, who was, in fact, my daughter. My daughter knew that neither of her parents were really her parents, but she didn’t let on. She was frightened, quietly so, the worst way to be afraid, more scared than I had ever seen her. Even the fake me was taken by this fear, and wherever the real me was, I was feeling cold deep in the pit of my stomach. My daughter moved her food around on her plate with a spoon, and the fake me found this odd. Her fake mother and fake father talked about things that never happened. Then, in my dream, I complained about my dream, singled myself out as the maker of the dream, then laughed. Laughing, I didn’t know if I was me or the pretend me. I awoke with the same feeling.

Dr. Terence was a very young woman. My wife didn’t trust her age and lack of experience. I figured she was up on all the latest journals.

“So, what’s going on?” she asked.

“You tell her,” I said to Sarah.

“I’m not seeing very well.”

The doctor tipped back Sarah’s head and looked at her eyes while she talked. “Things blurry?” 

“The optometrist couldn’t find her problem,” I said. “Rather, she couldn’t solve the problem.”

“OK.” She rolled back on her stool. She looked at the chart and noted the vitals, listened to and observed everything much in the way that I might stare at a car’s engine.

“Any pain in your eyes? Headaches?”

Sarah shook her head.

Dr. Terence held her hands wide on either side of Sarah’s head, well past her ears. “Keep your eyes pointed at my face. Can you see my hands?”

“No.”

She brought her hands forward. “How about now?”

“No.”

Forward some more, her hands now well in front of Sarah’s ears.

“There, I can see them.”

“OK.”

“What do you think it is?” Meg asked.

“I don’t know. I’m going to refer you to Dr. Peterson over at Children’s Hospital. He’s a pediatric ophthalmologist.”

I could see that Meg was unhappy.

“How are you sleeping these nights?” Dr. Terence asked Sarah.

“Same as always.” 

“Hard to wake up?”

“No.”

“What does that tell you?” Meg asked.

“I’m just asking questions,” the doctor said.  

It seemed odd, but right, that Children’s Hospital Los Angeles should be a cheery place. The lobby was lively and colorful. Bright colors, not pastels. A couple of clowns strolled through. Children laughed in the corners with their laughing parents. We checked in at the desk with a smiling young man who already knew our names and which doctor we were there to see. He instructed us to follow the light blue line to the east wing. On our way we passed a giant aquarium filled with angelfish and black ghosts; the angelfish actually had wings. This made me pause, and I stood there staring, a fish staring back at me.

“What is it with doctors and fish?” Sarah asked. There’d been an aquarium in Dr. Terence’s waiting room.

“Fish are supposed to be calming,” Meg said. “Fish calm everyone down. They use fish in prisons during riots.”

That’s not true, I thought, but I said nothing. In what prison were they using fish and how?

The outer waiting area of the ophthalmology department was done up in all red, various shades from pink to burgundy. Our wait for an examination room was, however, brief. The exam room was as one might expect. Posters of eyes and ears covered the walls. A square nurse came in with a clipboard, took Sarah’s blood pressure and temperature. She was talking the whole time, but I cannot remember what she said, if I even knew what she was saying. The nurse looked at the thermometer and nodded the nod of an expert at reading such things. “Let’s try the other arm,” she said about the blood pressure. “The other arm is not the same as that one.”

Sarah didn’t respond but looked at me as if to ask, What the fuck? And though Sarah would never have said that, not in those words, she actually did. “What the fuck?” she said, ironically.

“Sarah,” Meg said. I thought it was a reprimand at first. It wasn’t. “Sarah,” she said again.

My daughter looked strangely into the air in front of her. Her head fell back ever so slightly. 

“Zach?” Meg’s voice shot through me. 

Sarah was not herself, was not right. I took her hand, felt the small bones under my thumb. I thought it was odd that I was taking time to appreciate her delicate construction. “Bug?”

Sarah’s eyes fluttered and rolled back in her head. For some reason I looked up at a poster of the parts of the eye as if for an answer.

The nurse was at the door quickly. “Dr. Peterson!” she called down the hall. “Emergency in three.” Then, “Calling Dr. Peterson, calling Dr. P., trouble in room three, Dr. P. I rhymed.”

Dr. Peterson was an enormous man, near seven feet tall. He squeezed through the door and gently moved my wife and me out of the way. His giant head hovered over Sarah. “She’s seizing,” he said. So calmly he said it. But it wasn’t his daughter, was it?

And then it was over. Sarah looked at me, disoriented for only a second. I asked her if she was all right. She asked me why I was asking, smiled.

Dr. Peterson stood and bumped his large head on the ceiling. “Whew. An abscene seizure, not obscene, but abscene. But an obscene seizure is something to see, believe you me.”

“You rhymed,” the square nurse said.

“I believe I did,” the doctor said.

I awoke, sweaty and confused. I looked at my watch. I would be only a couple of minutes late for class.

Sarah claimed that her vision had not deteriorated further, but she was not seeing as she had. Dr. Peterson was not what I had dreamed. He was in every way average height, weight, humor, and strangely all of this ordinariness served to promote confidence in his ability as a doctor. He was at ease with Sarah, patient while listening to us describe the situation, and remarkably calm as my daughter slowly and quietly began to have the very seizure I had dreamed she’d have.

“Sarah, how is your vision today?” Peterson asked. “Sarah?” He leaned forward to look at her eyes.

“OK,” she said.

Peterson looked at her eyes. He paused, adjusted his light, and studied the left one again. He made a note. “Sarah, would you look to your left, please, away from the light? Sarah? Sarah?”

Sarah looked disoriented. She smacked her lips in a way that was unfamiliar. She had never done that before. Meg looked at me. I had never been so alarmed by any sound in my life.

“What’s going on?” Meg asked.

“Sarah?” Peterson was quietly alarmed now.

Meg and I, not so quietly. “What’s wrong with her?” I asked.

After a minute, she was staring back at us. “What is it?” she asked. 

“Are you all right?” Meg asked.

“Sarah, do you recall me turning to look at your eyes?”

Sarah didn’t answer, but it was clear that she was confused and quickly becoming scared. 

Peterson measured her pulse and wrapped the blood pressure cuff around her arm, inflated it while he studied her face. “How are you feeling?” he asked.

“Mom?”

“Just relax, baby,” Meg said.

Peterson released the cuff. “Everything sounds good.”

“What just happened?” I asked.

“Could have been nothing,” the doctor said. He got up, opened the door, and called in a nurse. “Lacy, would you take Sarah down and get her height and weight for the chart?”

Sarah looked at Meg, then to me. I nodded. “Go on.”

Once the door was closed, Peterson sighed. “Could be nothing, like I said. But your daughter might have just had a seizure, what we call a complex partial seizure.”

“What does that mean?” I asked. “What does it indicate?”

“Maybe nothing,” he said. 

“People don’t have seizures for no reason,” Meg said.

He took a pad from the pocket of his white jacket and started to write. “I don’t like to guess about anything. I think you need to have a neurologist see her. Dr. Gurewich is in this building and she’s very good.”

“What are you thinking?” Meg asked.

“Dr. Gurewich is excellent.”

The worst feeling in the world is knowing your child is afraid, not startled or apprehensive as when about to take a test or ride a roller coaster but paralyzed by that icy cold in the pit of her stomach, confused because she suddenly believes her parents cannot make it all OK. When Sarah broke her tibia playing volleyball, I was of course concerned and hated that she was in pain, but that was manageable. Now, there might have been nothing wrong at all and certainly I was afraid, but the look of fear in Sarah’s eyes sent that same ice lance through my center, lodged it in my spine, and kept it there, unmelting, unmoving. My daughter was my reason for waking each day, and I wanted to kill myself for having in some fashion already resigned myself to losing some part of her. Selfishly, I saw my world as illusionary, fragile, existing only because others allowed it to exist. I realized that I was ever awaiting such a moment of loss, that I was, in fact, daily resigned to death but had never resigned to life. I bit my tongue hard enough to snap out of it. But not hard enough to injure myself.

We performed well enough in the scene that preceded the afternoon appointment with the neurologist. We prepared as if headed for a routine visit to the dentist, Meg even reminding Sarah to brush her teeth, a request that made no sense and somehow all the sense in the world. In the car we listened to “Sarah’s” music, always worse in theory than in practice. At least for me. The sappy pop seemed to irritate the poet in Meg, but I had to admit I sort of liked it. While a girl sang a cheery, up-tempo ditty about happily casting off the devastating hurt of lost teenage love, I reached over and squeezed Meg’s hand. She rubbed her thumb against my knuckle. And this was the only expression of panic during our ride. I continued to be an agreeable audience to my daughter’s tunes and recalled first bringing her home after her birth. I thought as we were leaving the hospital, Are they really just going to let us stroll out of here with this person? But they did. No one warned us about the sounds a baby was likely to make in the night or how they might seem to stare ghostly at you in the darkness. Sarah gurgled crazily while sleeping, causing us to think she was choking to death. I would leap up and rush to her side only to have her noise subside into the most peaceful breathing. When I didn’t tear myself away from the sheets, her gagging would become eerily absent, and so I would spring out to be sure that she was still breathing. Most of my parental sleep deprivation was a consequence of my anxiety over keeping this creature alive. And so, here I was again. When I looked in the mirror at Sarah in the back seat, I found her staring at me, wanting me to make it all OK.

Dr. Gurewich was a broad-shouldered woman with a noticeable accent, I thought Eastern European. She talked to the three of us first, questions about Sarah’s schoolwork, her vision, her diet. She then called for a nurse to take Sarah and get her weight. I looked at the things on and around her desk. There was a basket with skeins of yarn and knitting needles on the floor.

It wasn’t so much a coolness or estrangement as it was that we were dividing, cleaving our child; she wanted her daughter and I wanted mine.

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Dr. Gurewich turned to Meg and me and asked about the alleged seizure we might have witnessed. We told her what we knew, what we thought we saw. She asked if we’d noticed any new behaviors, tics, sounds, sleeping problems.

“Nothing,” Meg said.

“She didn’t see my bishop,” I said.

“What?” from Meg.

“We were playing chess. She’s a very good, careful player. She didn’t see an obvious danger.”

“What’s that have to do with anything?” Meg asked me.

“No,” Dr. Gurewich said. “It’s a bit of information. It might mean nothing, but it might be useful.”

“It was something she never would have missed before,” I said. I shook my head. “But people miss moves all the time.” 

“But it concerned you?”

“I guess it did.”

The nurse returned with Sarah, handed the doctor the chart.

“OK, young lady, you sit up here and let’s have a look at you.”

“Have a look at you,” she said. I was reminded of my father saying that it was all well and good for one to see a doctor, but the doctor had to see you as well. Here was my daughter, my Sarah, being seen by the doctor, and I stood by wishing that the doctor could not, would not see her at all. In the examination room, the very fear that had begun to push or jolt Meg and me close again now seemed to do just the opposite. It wasn’t so much a coolness or estrangement as it was that we were dividing, cleaving our child; she wanted her daughter and I wanted mine. Even then, out of nervousness, I considered that word, cleave, and wondered how it could contradict itself so cleanly, wondered if the two meanings canceled each other out, leaving nothing in its wake. Cleave.

Dr. Gurewich had Sarah put her fingertips together, touch her nose, close one eye and then the other and take a pen, walk, hop, repeat series of syllables, repeat series of numbers, say the date, recall breakfast, recall yesterday, sing a song. The doctor looked at her eyes, felt her joints, tapped her reflex points with a hammer, checked her peripheral vision, talking all the while, a soothing voice, accent and all.

“Do you like television?” the doctor asked.

“I don’t watch much.”

“Spend much time on the computer?”

“I do my schoolwork on the computer.”

“Do you watch videos and things like that?”

“Not so much.”

“Do you like video games?”

“Not really. I used to play one when I was little. It was called Turn Me Loose.”

“Was it a fun game?”

“I guess. I was 6.”

“I remember that game,” Meg said.

“Does time ever seem to get away from you? You know, you’re watching and then all of a sudden it’s time for bed or time to leave. Does that ever happen?”

“Sometimes. Is that bad?” Sarah asked.

The doctor shook her head. “Happens to all of us. Have you felt disoriented lately? Are you more forgetful?”

“I don’t know.”

“Ever forget where you are? Feel lost for a second or two?”

“No.”

“This is going to sound like a strange question: Can you remember the last thing you forgot?” 

Sarah laughed.

“I told you it was a weird question.”

“I forgot I had a flute lesson.”

“Ever done that before?”

“I can’t remember.”

That made me laugh. Meg shot me a glance.

“Very good,” the doctor said.

The doctor went through many of the same tests again.

“Repeat after me: La fa ta.”

“La fa ta.”

“La la la fa ta ta.”

“La la la fa ta ta.”

“La la fa fa ta ta.”

The incongruous, ironic part of the exam was that, though I was completely, absolutely invested in watching, though I was bothered by worry, agitated, and perhaps near panic, I actually experienced what might have been the kind of small seizure I was afraid my daughter had suffered through as I became aware that some minutes had passed without my regard. I came to or awoke to find the doctor holding a sheet of paper towel in front of my child’s face. She was attempting to induce a seizure, I could see that, and I wanted to object but of course did not. 

“OK, Sarah, I’d like you to blow on the paper here and make it move. Do it until I tell you to stop. Big breaths.”

Sarah followed the instructions. The paper towel moved away and fell back four times, eight, and then Sarah stopped blowing; her head dipped, she seemed to fall asleep, and her head cocked to the right.

“Sarah? Can you hear me? Red. Blue.”

“Red?” Sarah asked.

“So you heard that.”

“Mom?” Sarah looked to her mother.

“It’s OK, baby.”

“Everything’s fine,” Dr. Gurewich said. “I’d like to run an electroencephalogram. And we’ll do the bloodwork. The seizures might be absolutely nothing. They could be environmental and might go away. It could be associated with her diet. I’d like you to chart everything Sarah eats for a week. And let’s get rid of all perfumes, scented soaps, and shampoos. Is that OK, Sarah?”

Sarah nodded.

“What kind of science are you doing in school right now?”

“Biology.”

“Any lab work? Dissecting anything? Any things that have a strong or disagreeable odor?”

“No lab at all.”

“Good. Sarah, why don’t you go out and wait in the other room. I want to schedule that test and talk to your parents about our next appointment.”

The doctor called the nurse and let her take Sarah down the hall.

“Well?” Meg said once the door was closed. 

“Everything I told Sarah is completely true. But there is a possibility we’re dealing with epilepsy.”

“Oh my God,” Meg said.

I thought it.

“A possibility,” Dr. Gurewich reiterated. “The good news about that is that even if it is epilepsy, drugs can control it. And epilepsy that shows in childhood does not mean a shortened life. If it is epilepsy, though, there will be drugs for the rest of her life.” She paused to study our faces. “Let’s do the tests and see what her blood tells us.”

“What about the vision thing?” I asked.

“That could be caused by the seizures. They are very mild, and I’m sure she doesn’t realize they’re happening.”

“That’s why she didn’t see my bishop?”

“Very likely. But we’ll keep an eye on the vision problem.”

The only good news you can hear when discussing your child’s welfare is that there is absolutely, positively nothing wrong. Sarah’s fear was palpable. She of course wanted to know what the doctor had said to us in private. Meg was unsure about whether to tell her; worse, she was uneasy. I told her anyway.

“The fact is, the doctor doesn’t know what’s wrong,” I said.

“She says you’re fine,” Meg said.

“The worst could be that you have to take some medicine,” I said, quickly. “But she has to do the tests to figure out what medicine.”

“Did I have a seizure?” Sarah asked.

“Maybe,” I said. “It was a small one if you did.”

“What is a seizure?”

I pulled the car over, parked under the shade of a chinaberry tree. I looked at Meg and she nodded to me.

“Is it really bad?” Sarah asked.

“No, Slug, it’s not really bad. Especially because we now know they’re happening. It’s as if you’re taking a tiny nap. Like a little short circuit in your brain.” (I was sorry I’d said “brain.” I was sorry I’d said “short circuit.”) “In a way, we all have them from time to time. You’re just having a few more.”

“So, what does the doctor think I have?”

“She doesn’t think anything yet. It could be your diet, your shampoo, or your deodorant,” her mother said.

“I don’t use deodorant.” 

“About that,” I said.

“Zach,” Meg complained. 

But Sarah laughed. 

That night Sarah cried out with a bad dream. Meg and I ran to her room the way we did when she had night terrors as a small child. She never awoke, as she never awoke then. Meg held her and rocked. I put my hand on Meg’s shoulder, as if Sarah could or would feel my hand through another body. As I touched Meg, I felt her soften, and I felt close to her like I had so long ago. In that moment Sarah was not her daughter and my daughter but our daughter, the way she had been our daughter when we first brought her home, when looking at her was akin to looking at a portrait of the three of us. Meg looked at me, and I could see the fear.

It irked me that Children’s Hospital was so decidedly cheerful. It irked me that I was irked by it. Why shouldn’t the place have been cheerful? It was, after all, where most children got better. I should have believed that because of all the happy colors and tanks full of smiling fish and bright, shiny, floating balloons, my child would be made better as well. I wanted to believe that, but apparently I didn’t. I had sunk into a pessimistic wormhole, and, knowing I couldn’t extricate myself, I at least resolved to hide my fear.

I followed the red line on the floor to neurology. That unwavering, resolute red line. Situated between the blue and yellow lines, leading past the big fish tank, over the pedestrian bridge, having no meaning by its being red but meaning everything because it was red. I followed, chased, heeded the red line until it led me to my daughter.

Somehow my red line following got fouled up, and I arrived again at the big aquarium, where I stood staring at an oversize angelfish that decided to stare back at me. A black ghost slithered his eel body through my peripheral vision. I imagined that if I chose to hallucinate at that moment, the angelfish would speak to me, say something cryptic or profound; as I stood there entertaining this weird notion, it dawned on me that I was essentially hallucinating anyway. I looked down, rediscovered the red line, and set off again with neither more nor less resolve. This time I found Dr. Gurewich’s office and my family. 

Sarah embraced me as if she had not seen me in a very long while. It surprised me, scared me somewhat, though I loved the feeling of it, being reminded of when she was so much my baby. She had never felt smaller.

Dr. Gurewich called in a nurse. “Melissa, would you take Sarah and get her blood pressure, respiration, and heart rate?”

It was so clear that she was simply removing Sarah from the room that I became immediately terrified. Meg saw it in my eyes, and I saw it in hers.

“We’ll be right here, baby,” Meg said to Sarah.

The nurse led her away and closed the door. 

Gurewich’s eyes looked tired. She rubbed her forehead and temples and appeared to be not all there.

“Were you up late?” I asked her.

She absently reached into her knitting basket and pulled a skein of blue yarn onto her desk. “No,” she said. She paused and kneaded the yarn with her hand. “Sometimes I get migraines.”

I nodded. “What have you learned?”

“That scents often bring them on,” she said.

“About Sarah,” I said.

“Of course.” The doctor collected herself.

“What is it?” Meg asked.

“I first became suspicious when Sarah’s urine tests showed dolichol. So we took a closer look and did find vacuolated lymphocytes. Those are white blood cells that have holes in them.” 

“OK,” I said.

“There is a group of disorders called neural ceroid lipofuscinoses. NCL.”

“OK.”

“I believe—I strongly believe—that Sarah has Batten disease. That would explain all of her symptoms. Her skin and tissue samples support this diagnosis.” Gurewich kneaded her yarn. 

“How do we treat it?” I asked.

Meg was silent.

“We can’t,” Gurewich said.

“You mean she’ll just live with it, have these seizures? Can we control the seizures?” I asked. 

Gurewich leaned even more forward.

“There is nothing we can do.”

“Excuse me?” I said.

“What are you talking about?” Meg asked. “What are you saying?” She stood up and sat right back down.

I took Meg’s hand.

“The DNA analysis shows a mutation in the CLN3 gene on chromosome sixteen.” 

“Are you saying that one of us gave our child this?” Meg said.

“It’s a recessive trait. It comes from both of you. You are both what we call unaffected carriers. There would have been no way for you to know.”

Meg pushed my hand away, gently, but away, ostensibly to find a tissue in her bag. 

There was no other way to say it, except of course that we were left to say it ourselves, though not out loud; that would have been too much. Our daughter was dying. My little Sarah would not survive this genetic defect. I was lost. Meg was lost. She couldn’t even blame me for what was happening. For her sake, I wished that she could have.

Over time, my daughter would suffer worsening seizures, her sight would finally fail altogether, her speech and motor skills would grow progressively worse and fade, and she would suffer mental impairment; she would become demented. I would lose her before she was gone. Selfish­ly, my first impulse was to find the cheap, old, five-shot .38 that had once been my father’s but was now hidden away in a trunk, put the muzzle inside my dry mouth, and pull the trigger. My usual response to all situations (namely, to search for and implement a solution) had been effectively taken away. There was no solution. Even the quickest study of the disease left no room for doubt. My daughter would not be cured; her life would not be made better in what abbreviated time remained for her. And worst of all, worst of all, my daughter was all too capable at that moment of understanding the gravity of her situation. How does a parent tell his daughter that she will not only die young but that she will essentially fall apart on her way to her end? Does a father tell his daughter? I looked at Meg. I wondered if she would be able to tell her daughter, my daughter, our daughter.

We did not tell her that night. We told her that the doctor thought she had epilepsy, that she had to determine what kind of medication she would take, that we believed everything would be all right, that she would live a long life. Our lie was made OK because we left ourselves an out: we had said we believed she would be well, not that we knew, not that it was a fact, not that it was true. Belief was a wonderfully plastic notion. We put her into bed and tucked her in, as we did when she was 2, warm under her blanket and our lie.

In the dining room we sat and did not speak. I could think of nothing to say. I couldn’t imagine what Meg might say. What amazed me was that I did not let my mind wander to my work, my usual refuge, distraction, safe harbor. I would not be sleeping. Meg and I needed space at that moment, not each other. Correct or not, that was my reading.

“I need to think,” I said. I left the house.