Chiasm

Heather Osterman-Davis

When my eight-year-old daughter, Nora, started losing her sight, I didn't even notice. After a year of battling the pandemic from the confines of our small New York City apartment, our family desperately needed to get away. Since my husband was working from home, we rented a house on a small lake in Pennsylvania for the entire summer. It was nirvana. Even my chronic fatigue, which I’d developed five years earlier, was largely in remission. Every day I’d row Nora and her brother to a small communal beach where we swam until sun, fatigue, or hunger sent us home. Halfway through the summer, my mom came to visit, and Nora, who'd just learned to swim underwater, practically dragged her to the beach. “You won’t believe what I can do,” she said. “I’ve been waiting and waiting to show you.” My mom and I watched as she took a large gulp of air before disappearing under the water, her cheeks puffed out with air.

The last morning my mom was there, she and Nora sat on the back porch reading The Black Stallion, their easy laughter drifting through the screens. Afterward, my mother pulled me aside. “Do you know she can’t see anything?” my mom asked. “She’s reading like this,” my mom said, holding her palms inches in front of her eyes, “and can barely make out the words.” 

 When I tested Nora, I discovered it was true. Not only could she not read the small print, but she couldn’t even make out the larger notes in her piano book. I had her try on my glasses, but it didn’t help. I peppered her with questions: “How long has this been going on? Did you notice anything?” 

“I don’t know. I don’t know,” she said, again and again, until I realized my interrogation was scaring her. “Should I have known?” she whimpered.

 “Of course not, Nugget,” I said, pulling her into my lap. “It might not even be serious, but I’ll call Dr. Y and find out.” 

My daughter was born with neurofibromatosis type 1, a disease that can cause tumors to grow throughout the nervous system with a vast range of consequences. Among children with NF1, one of the common complications is an optic nerve glioma, a tumor that forms in or around the optic nerve. As the tumor grows, it causes a child’s eyesight to deteriorate and, if unchecked, can lead to blindness. While NF1 can occur through spontaneous mutation, it’s often inherited from a parent. Nora’s NF1 is my fault; I gave it to her and her brother, without knowing I had it. 

I contacted Nora’s neurologist and he emailed back within the hour, saying he’d made an appointment for her to see an ophthalmologist that Friday. At the ophthalmologist’s, Nora missed letter after letter on the chart. What the average person can see at two hundred feet, she could detect only at twenty, which almost met the criteria for being legally blind. Another test measured how well her optic nerves received signals. The results were displayed in stoplight colors, a sliding scale of good to bad. Two eyes, four quadrants each: lots of red, a sprinkling of yellow, but only one green. While they wanted an MRI to confirm the diagnosis, all evidence pointed toward an optic pathway glioma.

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The left and right optic nerves intersect in the optic chiasm, an X-shaped space directly in front of the hypothalamus. Before learning this, I only knew chiasm, or chiasmus, as the literary device where the sequence of ideas is presented, then presented again in reverse order, a mirroring of concepts and parts of speech. I had an English professor who said chiasmuses were so powerful and memorable because they existed in the intersection of elegance and logic. But logic in literature is subjective. Take for example the quote by Euripides, "Love makes time pass. Time makes love pass." While this sentiment might have been logical for Euripides, who had two marriages that ended due to his wives’ infidelity, it’s entirely inapplicable to a parent who has to wait fourteen days for an MRI to confirm their child has a brain tumor. 

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Back in Pennsylvania, we tried to fill the two weeks with magic. We swam, played board games, ate too much ice cream, and invited new friends over for dinner, rowing them home across the lake under the stars. I planned to drive Nora back to the city for her MRI while my husband stayed with our son at the lake. Before we left, my reserved son threw his arms around his little sister and said, “I hope you’re okay.” While we hadn’t spoken with the kids about the possibility of a brain tumor, they knew that something was wrong. 

Due to Nora’s age and the difficulty in getting clear images of her brain and orbits, they recommended sedating her for the MRI. “The worst thing would be having to do it again,” a nurse said. I wanted to tell her she was wrong—the worst thing was needing to do it in the first place. The night before the test, Nora curled her soft body into me. “Mommy, are you sure I’ll wake up from the MRI?” she whispered. “Does anyone ever, you know, D-word?” She couldn’t even say the word “die.” 

“You’ll wake up,” I said. “I promise.” Apparently, my word wasn’t enough, because in the morning she grilled the anesthesiologist: “Can I see the mask? How long will I be asleep? Are you sure I’ll wake up? Will you monitor my heart? My breathing? Has anyone, ever, like ever-ever, not woken up while you were doing this?” 

The MRI was on a Friday, and we were scheduled to see the oncologist on Monday, assuming the MRI didn’t miraculously reveal that nothing was there. The neurologist promised to call as soon as he’d read the scans, and I held my phone for the next forty-eight hours, even sleeping with it under my pillow. He finally called Sunday night, apologizing profusely for the delay, explaining that he’d just been given the scans. Then he confirmed it was a tumor. 

In anticipation of the oncology appointment, I’d purchased mother-daughter matching sundresses, something Nora had always wanted. The white dress—covered with bright orange and blue flowers—was adorable on her, but I looked like an aging woman trying but failing to reclaim her youth. But I wore it happily because it was something I could do. As we waited to cross the street to the doctor’s office, a woman touched my arm and smiled. “You two are beautiful. Enjoy it, it goes so fast.” The light turned and, as we walked off, she shouted after us, “You’re doing great, Mom!” 

My mother and sister had joined us for the appointment and, after examining Nora, the oncologist suggested my mom take Nora for a walk. My sister, a radiation oncology physicist, stayed to take notes and ask questions. Nora’s tumor was centered in her left chiasm but had stretched into other areas of her brain. As it was located in the area that controls coordination, motion, vision, and hormone regulation, surgery was off the table. And radiation was a last resort because of its potential to create a secondary cancer. 

Our treatment choices were carboplatin/vincristine, a traditional chemotherapy which would be delivered through IV infusions weekly for fifty-two weeks, or selumetinib, an oral chemotherapy taken twice daily at home for two years. Selumetinib, a MEK inhibitor, works by blocking the proteins needed for cell growth and killing cancer cells, though it was considered experimental for treating Nora’s specific type of tumor. 

“What would you do if it was your child?” I asked the doctors, but they would only say that there were benefits and risks to each. I struggled over which toppings to order on my pizza; how could we be expected to choose the right treatment for our daughter? 

Afterward, I met up with my mom and Nora, evidence of chocolate ice cream dotting her dress. “That was weird,” Nora said, without preamble. “That was a doctor appointment about me, but I wasn’t there. Does that mean it’s really bad?” 

I suggested we go home and call Daddy so we could all talk about it together, but she wouldn’t budge. “It’s my body. I want to know now,” she said. I looked at her, amazed. She was more confident in her body—and in her power over her body—than I was at almost fifty. 

“Okay,” I said. “We’ll talk now.” 

Nora asked question after question about the different treatment options: how well they worked, the potential side effects, and if she’d still be able to go to school. I answered to the best of my knowledge. Then as we finally started toward home she asked, “What does it look like?” 

“Like a mini octopus,” I said, thinking of its bulbous center with arms and tendrils stretching out into her brain. 

“We should call it Octopoop,” she said. “Because it’s poopy.” 

“The poopiest thing ever,” I agreed, squeezing her hand. 

After flurried research and much agonizing, we decided we wanted the MEK inhibitor and luckily got into the clinical trial where it was offered. Every month we’d have to go for bloodwork, EKGs, EEGs, and a myriad of other tests to make sure the pills weren’t poisoning the wrong parts. Every three months, she’d undergo an MRI. The first day of treatment, a woman from Child Life Services took Nora off to learn how to swallow pills. They came back with a handwritten poster listing the steps: 1. Wet mouth 2. Put pill on tongue 3. Put water in mouth 4. Swallow 5. Burp Burp. Nora had practiced with Tic Tacs, then empty pill casings, and was ready to try the real thing. As the oncologist, his resident, the study director, the child life specialist, and I looked on, Nora proudly swallowed her first pill. Everyone burst into applause, more like she’d finished a piano recital than ingested medically sanctioned poison. As she prepared to swallow the next two, I slipped into the hallway to cry. 

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When the exact words in a literary chiasmus are inverted, it’s antimetabole, a virtual palindrome of words. Antimetabole is often used as a rhetorical device to ingrain a phrase into the listener’s mind. “Ask not what your country can do for you, but what you can do for your country,” or “When the going gets tough, the tough get going.” While memorable, it’s not entirely accurate. Sometimes you get going because staying still means drowning.

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On Halloween, Nora dressed as Rapunzel and was eager to go trick-or-treating, especially since last year had been a wash due to the pandemic. The mood on the street was exuberant, full of hope and wonder, and it was impossible not to bask in the joy. But as day slipped into dusk, the low evening light made it impossible for Nora to see more than a few feet in either direction. Each time she climbed up brownstone steps, I waited, arms stretched out at the bottom, worried she’d fall. Back on the sidewalk, a throng of children rushed between us, and Nora screamed out, “I can’t see you, Mom! I can’t see you!” I got to her within seconds, but she was sobbing, shaking, done. 

Nora and I both joined “brain-tumor survivor” support groups. The word “survivor” confused me because I had always associated that term with people who were cancer free, who’d beaten it all. “Brain tumors are different,” the support group facilitator explained. “Often brain tumors never go away, and even when they do, the impact of surgery or treatment frequently remains. Nora is a survivor right now. You are a parent of a survivor right now.” 

Somedays, I felt like I was killing it as Cancer Mom. My daughter and I wrote songs for “Tumor the Musical.” At night we envisioned her tumor shrinking, twisting it into thick, sticky strands and tossing it out the window. We hid in the closet and screamed into pillows or cursed at her tumor with progressively absurd insults until we dissolved into laughter. But I had to constantly pace myself to keep my chronic fatigue at bay, and so many other things fell to the wayside. My house was a mess. I fed my kids too much junk food and gave them unlimited screen time. I worried I was neglecting my son. I paid bills late, left emails unanswered, and snapped at particularly rude strangers on the street, in what my husband and I coined, “marginally misplaced anger.” And worst of all, forgetting how Nora’s vision had changed, I pointed to things on the horizon she couldn’t see, hating myself for hours afterward. 

Two days before Thanksgiving, Nora had her first full assessment since starting treatment. Her vision showed surprising improvement, especially in her left eye, which had been the worse of the two. We were ecstatic but the ophthalmologist cautioned us not to expect continued improvement, explaining that “two data points don’t make a trend.” My husband, Nora, and I all went to the oncologist and Nora wedged herself between us, weaving her fingers into ours, squeezing hard. An image of her brain appeared on a large computer screen, and the oncologist flipped back and forth from the previous MRI to this one, excitedly pointing out that the tumor had shrunk by almost 50 percent, far more than they expected. Nora threw her arms up in the air and ran around the room whooping with joy. 

To celebrate, my mom took Nora and me to see Aladdin on Broadway. Knowing that from the balcony the stage would be nothing but a blur, my mom splurged for orchestra seats. Nora kept hugging us again and again, whispering, “Thank you. This is the most wonderful thing ever!”

Then sometime in the second act, strobe lights exploded across the stage, causing Nora to cry out in pain and bury her head in my shoulder. The tumor had made her extremely sensitive to rapid changes in light. If I’d known it was coming, I could have prepared, but the sudden illumination was an unexpected attack. “Is it over? Is it over?” she whimpered quietly, as I covered her head with my sweater. 

Later, riding the elevator toward home, Nora sighed. “I wish I didn’t have this tumor. It’s too hard, Mommy. It’s too hard.” 

“If I could, I’d pluck it from your brain and put it in mine,” I said, dropping to the dirty elevator floor to hold her.

Shocked into silence, she looked at me with eyes widened into bright O’s. “You’d do that for me?” 

“In a heartbeat.”

“That’s the kindest thing anyone’s ever said to me,” she whispered. “That’s the most anyone could ever be loved.”

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Though less common, a literary chiasm can present contrasting concepts as long as they maintain the pattern of inverted word order. “It breaks my heart that she understands the depths of my offer, but the depth of her understanding floods me with joy.”

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Nora, who had always been fiercely independent, began to have sporadic moments of intense regression. “Do ‘Mama had a baby,’” she pleaded, climbing into my lap. I cradled her, chanting in a singsong voice, “Mama had a baby, and she hugged her like this. Mama had a baby, and she gave her a NOSE kiss.” We rubbed noses and she giggled. I repeated the process again and again, substituting nose with cheek, elbow, chin, and forehead, until, sated, she slipped off my lap. I didn’t begrudge her this. Some days I wished I could still crawl into bed with my own mom, listening to her read Anne of Green Gables as I fell asleep. 

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After half a year of treatment, one more line of letters came into focus on the eye chart, but there were no perceptible changes in Nora’s tumor. “I wanted it to be smaller,” she said, disappointment etched onto her face. “I really hope it will shrink next time.” The doctors, who deal in probability, not possibility, said that additional shrinkage wasn’t likely, that this was probably as small as it was going to get.

While chiasmus usually appears as part of a phrase, paragraph, or speech by an individual, there’s no rule that dictates this. In Richard III, Richard asks, “But shall I live in hope?” This chiasm is completed, not by Richard himself, but by Lady Anne. “All men I hope live so,” Anne answers. This structure feels deliberate, as if hope requires external confirmation. My daughter might not need external confirmation, but she deserved it. Probability is not the “thing with feathers” that perches in the soul. 

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“I want to ask you something, but I’m afraid,” Nora said one day while I was making dinner. Even after I assured her she could ask me anything, she couldn’t get it out. I put down my knife, turned off the burners, and took her into the bedroom where I made a tent with a blanket. Finding comfort in darkness, she asked if she’d pass this disease to her children. I try not to hear it as, “like you did to me.” The fact is, if she has biological children, there’s a 50 percent chance they’ll inherit NF1 and any of the myriad of medical issues that can come with it. Of course, it could be avoided with genetic screening—but that’s so loaded. If I’d known about my disease and used genetic screening, Nora wouldn’t exist. My daughter has pulsed with incandescent beauty since the day she was born, and the thought of her not being in this world makes me ache. The thought of me not being in this world makes me ache. 

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Our imperfect bodies are bodies of perfection.

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At the nine-month mark, Nora’s vision had improved to a degree that astonished the doctor. While anything beyond a few hundred feet remained a blur of colors and shadows, she could read most books without her magnifier, see the board at school from a few feet away, and read the titles of her favorite television shows from the couch, though not the smaller text of the descriptions. The tumor, though, stubbornly remained the same size. In the week leading up to the MRI, I’d done my best to prepare Nora for this possibility, to balance hope and expectation, but she was inconsolable. One of the doctors suggested that she should be thankful because many kids’ tumors didn’t shrink, and most kids didn’t regain any sight, let alone the amount she had. Before I could open my mouth to protest, Nora curled her hands into little fists and screamed, “You don’t get to tell me how to feel! This is my body! I’m allowed to have my emotions.” 

I wanted to applaud. She was entitled to her emotions, even anger—something patients, especially females, are too often told is unacceptable. When I was a sophomore in college, I found myself suddenly unable to walk, gripped by excruciating pain in my ankles. I had to leave school, and my parents dragged me from doctor to doctor, trying to get help. Eventually I was diagnosed with osteochondritis dissecans, a condition in which the bone underneath the cartilage in a joint dies due to lack of blood flow. The bone can then break loose, causing pain and inhibiting movement. At the time, there was very little that could be done for it outside of surgeries where the cure was worse than the illness. One renowned orthopedist examined my records and sighed. “Imagine you had a car with balding tires you could never replace. What would you do?” I was apoplectic. It was one thing to acknowledge she couldn’t help me, but she could have at least helped me figure out how to thrive in the body I had, rather than implying I should park myself in a garage, out of sight, waiting. So, without missing a beat: “I guess I would blow it up, collect the insurance money, and buy a new car.” Afterward the doctor told my mother she didn’t think I was “a fit” for her practice, as if compliance and gratitude were integral to my treatment. The misconception that there’s a way to be a “good patient” clung to me for years. Why is gratitude essential while disappointment is detrimental? 

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The chiastic structure can also be applied to the complete structure of a literary work. In some stories the comparative symmetry is so strong you can split the story at its midpoint, fold it in on itself, and the contrasting plot points would line up one by one. This structure ensures cohesion; the ending is in the beginning.

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The summer following Nora’s diagnosis, we rented a different house near a different lake. My mom came to visit one week, almost a year to the day since the visit that set us on the path to discover the tumor. Nora, who'd just learned to jump off the floating dock into the deep water, practically dragged my mom to the beach. “You won’t believe what I can do,” she said. “I’ve been waiting and waiting to show you.” My mom and I swam with Nora out to the dock and watched as she took a large breath, scrunched her face tight, and launched herself into the air, disappearing under the water. I held my breath until she broke the surface, her face exploding into a smile. 

If her brain tumor story was a chiasmus, that moment could have made a somewhat tidy resolution. But it’s not that simple. What was the actual beginning of the story? When Nora inherited my NF1 gene? When she got diagnosed with cancer? How about the folding point? Is it when the tumor first started to shrink and her vision rebounded? Halfway through the clinical trial? And what of the resolution? Stopping treatment? Maintaining stability for three months after she comes off medication? A year? Ten? Brain tumors don’t adhere to predictable structure. You miss the true starting point, and there is often no clear resolution. This is why you get to be a survivor the day you’re diagnosed. Maybe this is the case with many things.

Heather Osterman-Davis is an unapologetic genre jumper. Her work has appeared in Tin House, Creative Nonfiction, River Teeth, The New York Times, Slate, McSweeney’s, and The Washington Post. She's currently at work on a memoir about creating her nontraditional family.