In the operating room, my husband sat stationed at the side of my head, a cloth barrier blocked our view. The first thing the doctor grabbed hold of was a foot, and in that moment, my husband stood up and snapped a photo of our daughter. She’s hanging in the balance. Her legs and torso are out of my belly, her head and neck still inside the womb, one shoulder in, one arm out. Her skin blanched, almost gray, her back splattered with goop, her scrawny legs covered in a red film, and the ankle of her right foot bent unnaturally. In those seconds before she fully arrives, we are suspended in a strange fleeting space between then and now, before her skin turns pink and then beet red, before we see her almond eyes and pinched face, before we hear her tender cry.

The photo reminds me of the image of Achilles and his mother, Thetis, in the famous painting by Reubens. Achilles hangs by his foot immersed under water as Thetis dips him in the magical River Styx hoping to protect her son from what fate has in store. A fate, despite his mother’s efforts, he can’t escape. I wonder if it’s a sign—the photo, my daughter’s right foot—the first bit to emerge from the warm safety of my womb. I wonder if all of her pain was predetermined from the start, her tiny right foot, her own Achilles heel.

My daughter has a chronic neuropathic pain disorder—complex regional pain syndrome. It’s a mouthful. They call it CRPS. It affects limbs, in her case the right foot. Episodic, it comes in waves. When it’s bad, it’s like a tsunami. Sarah’s first bout hit at age five—a sharp, stabbing pain in her right foot on a Sunday morning in October. We sat on the wide, stone steps of the Field Museum in Chicago and took off her right shoe looking for the culprit. No pebble, no pin, nothing. She loved running through the museum to see Sue, the giant Tyrannosaurus rex, and the dioramas of the man-eating Tsavo lions, baboons, and giraffes. But that day all she wanted was to be carried. X-rays found nothing, but the doctor opted to cast her anyway; her first of five.

The cast was bright pink, and she loved it for the first hour while friends in the neighborhood took turns drawing on it with a black sharpie. After that it was an annoyance, getting in the way of climbing the monkey bars, going to gymnastics lessons, and taking a bath.

The second cast came two years later. Sarah was seven. The pain in her right foot was back, and she had begun to hop everywhere on her left foot. The orthopedic surgeon recommended another cast for another month. This cast was green. A few weeks later at back-to-school night, I scanned the second-graders’ self-portraits hanging in the classroom. Sarah’s was easy to spot. No head or body, just a leg, the outline of a cast from the knee down, a jagged-edged, green monster with angry black eyes drawn inside the foot.

Along the way there was an orange cast too, my daughter reminds me. By then we were seeing an orthopedic specialist thirty minutes down the road.

A couple years later, more pain, more hopping, more x-rays and an MRI, which was negative. The specialist resorted to casting too. The best thing about this cast was that it was removable, which made it much easier at bath time. But keeping a Velcro-bound walking boot on my then ten-year-old daughter proved impossible. I’d find it abandoned in the hallway, under the bed, shoved in a closet, buried in the bed clothes, on the playground, in the trunk. Eventually, we deserted it altogether, and she continued to hop and complain. The last time we saw the specialist, he murmured, “I think one day she’ll grow out of it.”

The last cast was purple. Sarah’s foot had gone quiet for a few years. Not silent quiet,  more like the quiet buzzing you hear in a therapist’s waiting room with a white noise machine running. She was thirteen and her foot pain came back to haunt loudly. Her nights were sleepless; the pain incessant. We moved on to the children’s hospital and the Chief of Orthopedics, a kind, cerebral man with a sharp sense of humor who made Sarah laugh. He took a careful history and did all the usual tests, which were negative, plus a bone scan. He propped the scan in a viewing box outside the exam room for me to see the scattering of dots spread across the image of her foot. The scan meant nothing to me, and he described it as equivocal. He suspected this wasn’t a bone or muscle problem at all but said, “I know it doesn’t make sense, but we’ll try a cast again.”

This cast exacerbated the pain, and after three days the doctor cut it off. His intuition had been right, this wasn’t a bone problem. He referred us to a large, research hospital for an evaluation, which marked the start of her battle with complex regional pain syndrome. For years we had been in search of a cause for her pain, now it was clear that her pain was the disorder, not the symptom.

*

Here’s how CRPS works: The body suffers an injury. A network of nerves sends a pain signal. The brain malfunctions. The nerves misfire. The brain grabs hold of the pain. Sarah’s foot keeps sending signals which her brain interprets as ongoing pain and that triggers a pain cycle—chronic pain. It’s analogous to a broken circuit, a matter of crossed wires. Somewhere in the circuit a signal has gone haywire.

CRPS in children typically resolves spontaneously with treatment the experts said. The prognosis: favorable. The disorder is most common in adolescent girls, but it’s not common. In fact, firm data on the incidence of pediatric CRPS is hard to come by because it often goes undiagnosed or misdiagnosed for years. For many young people, CRPS starts with a minor trauma, a sprain, a twist, a dislocation, or a fracture. But with some, like my daughter, there is no history of trauma. Sarah’s physical examination was non-revealing and her neurological assessment normal. The clinical diagnosis of CRPS came down to ruling out everything else.

*

With what felt like bad luck but good odds, we moved forward. The pain doctors at the medical center, a large group of pediatric anesthesiologists, were caring and convincing. The journey might be difficult we were told, but there was an end in sight. To start, they abandoned the casts and prescribed a high dose of a nonsteroidal anti-inflammatories, fifteen ibuprofen a day, plus some home-based physical therapy. First, I rubbed her right foot and ankle with a soft plastic brush for fifteen minutes, then fifteen minutes alternating her foot between two buckets filled with water: one warm, one ice cold. For another fifteen minutes, I poured cups of dry rice over her foot and let it tumble into a third bucket. We repeated the regimen three times a day and kept a chart to track it all. The buckets, old plastic bins that once held chlorine for the pool, sat lined up against the wall in the family room for months. If it sounds strange—it was—and it did nothing to relieve the pain.

From there the pain cycles escalated and the treatment became more invasive: prescription medications, dozens; nerve blocks, at least twelve; hospitalizations, two; trials with an experimental drug, a handful; office visits, phone calls, and insurance claims, countless. Biofeedback, TENS (transcutaneous electrical nerve stimulation), physical therapy, compounded salves. Nothing worked. As Western medicine continued to fail us, we looked East. We tried acupuncture; she could manage the needles, but the pain continued. We tried meditation together, a CD by Jon Kabat-Zinn. She hated it, and I fell asleep. One young resident tried “mirror therapy.” She asked Sarah, then fourteen, to stare at her foot’s reflection in a mirror, the remedy designed to deceive the patient’s brain into thinking she is not experiencing pain. Sarah rolled her eyes; she wasn’t about to be tricked. For a while she kept a scalding hot water bottle on her foot, numbing it, trading one pain for another.

Over the years the pain made sleep impossible. She lay wide awake late at night for hours, the light on, a cat by her side, me on the open half of the bed. Sleep was elusive so we improvised. Sometimes, I read to her. More often we watched reruns of Scrubs and Friends on her laptop as she fidgeted to find a comfortable position. I told her stories about my teenage years and my wild friend, her godmother, leaving out my own wildness. We took Buzzfeed quizzes. Which Disney princess are you? Me: Belle; Sarah; Ariel. Which character from Star Trek, The Next Generation are you? Me: Counselor Deanna Troy; Sarah: the Klingon Worf. A couple times her father took her to a midnight movie, but they left before the end, the pain made it too difficult for Sarah to sit still, to concentrate. All she wanted was sleep.

Often on those late nights, I’d talk and she’d listen. One night I told her about my fear of infinity. My fear of the numbers that keep mounting, adding zero after zero, and the universe that keeps expanding, getting bigger and bigger without an end in sight. “What’s beyond the end of no end, on the other side?” I asked nervously when I was taught about infinity in 4^th grade. The concept was too large for me to grasp. It made me anxious then, and the question still plagues me. I know the idea of being afraid of an abstract concept is irrational, so I shut it down. I no longer think about the infinite. I take refuge in the boundaries, and limits, and containment that help me make sense of the world. I need an ending to match each beginning.

*

“Yes, at some point your daughter will likely grow out of it. Our pediatric CRPS patients eventually just stop coming,” said our favorite pain specialist, a friendly, young Indian woman who had worked with Sarah from the very first clinic visit. As we trekked back and forth (an hour and half each way and longer in traffic) for appointments and procedures over the years, my daughter and I sometimes talked about when it would be over. Together we believed the end was dangling in the distance, still out of reach, but reachable.

She turned fifteen, then sixteen, then seventeen. The pain was always there.

Exhaustively I researched kids and chronic pain, read the books, searched the web, made call after call. Continually, I felt out of control. But there’s a resiliency to children and Sarah endured. Never one for tears or drama, over time her response to the pain became muted. Her complaints delivered as a matter of fact. She put on that stiff upper lip we mistakenly encourage kids to keep. “Hang in there.” “You’re ok.” “It will get better.” Was she ok? Would it get better? How many times had I said stupid things like that to her?

The myriad of clinic visits and procedures began to blur over the years. I lost track of time. One day, I drove home in a fog after she underwent another nerve block and long day at the hospital. Sarah dozed in the seat next to me, and I sat paused at a light across from the entrance to the headquarters of a large, ubiquitous tech firm. We passed this way each time on our way to and from the hospital. I watched the visitors and tourists outside of the tech firm’s gate taking selfies in front of the large, white billboard with the oversized, thumbs up symbol in the center.

They posed and smiled with their thumbs in the air. And I smiled too. I’ll take your affirmation, and give you back my “like.” I pushed my hand forward toward the windshield, my thumb in the air. It had to be a sign. I began to fantasize: This is it. She’s turning the corner. The episodes are less frequent, first three, then six months apart, then it will be a year, then longer, and longer, and then it will be over.

I looked over at Sarah and gave her a gentle nudge. “It’s been a while since your last nerve block, right?” I asked.

“Mmm hmm.” Sarah, still groggy from anesthesia, mumbled back.

I thought back and counted. “The last block was when? November. So that’s one, two, February, March…six months. Right?” No answer. At that point in the car ride, Sarah was fast asleep, snoring softly.

We never got to more than six months between episodes and more often even less time elapsed.

*

The outcome of CRPS depends. It’s highly variable. Relapses are common. The experts don’t know what happens to children whose chronic pain does not resolve. And it’s hard to find numbers that measure the extent of the failure. Children with CRPS are often “lost to follow up” according to the research. But maybe, when the drugs and procedures continually don’t work, as Sarah’s doctor said—they just stop coming back.

In the spring of her senior year of high school, my daughter was getting ready to go on a mission trip to Mexico. Her fourth one, organized by a big church in our town, 200 high school kids and a couple dozen parents travelled to a border town over Spring break each year to build homes. For Sarah it was a week-long sleepover in a tent with friends, her days filled with mixing cement, hammering nails, and hauling lumber, and nights spent giggling around the campfire. She loved it, but she often struggled with pain on these trips. Spending all day on her feet without much of a break was a challenge, and the heat in Mexico didn’t help, but the people and activity were a great distraction.

A few nights before she was set to leave, Sarah stood by the front door with wild eyes. Her pain had flared sharply. She hadn’t slept in days. I asked her pain doctor to prescribe something to help Sarah sleep. When she did fall off to sleep, the pain woke her. I wanted something strong enough to knock her out, to let her rest. Her doctor resisted. “I don’t like to go the route of sleeping pills with children,” she said. Neither did I, but I pressed. I understood the doctor’s caution but seeing your child in constant pain changes your outlook. What’s reasonable gets recalibrated, and a few trazodone or Ambien fell within range for me. Her doctor barely conceded.

When I left to pick up the prescription, Sarah stood blocking the door. Her long, curly hair splayed in all directions like an untamed mane. She looked like a crazed animal—exhaustion had transformed her. Then came the tears. “They said I would grow out of it.” I nodded. “Do you realize that I’m eighteen years old?” Black mascara streamed down her face. “I’m not going to grow out of it, am I?”

*

For years, I’ve been trying to get my head around pain. Here’s what I’ve learned.

Pain has its own unique sensory system, a kind of sixth sense. Nociception, noci derived from the Latin word for hurt, is the ability to feel pain caused by an injury to the body. Subjective and personal, pain is a sensory experience that eludes the traditional senses. It’s hard to pin down. You can’t see it. There’s no device to locate it or measure it. You can’t hear it. Pain has no sound. It’s the hollow silence that fills the space before the sigh, the cry, the whine, the whimper, or the shriek arrives. You can’t smell it, taste it, or touch it. All you do is feel it.

I cling to the “favorable” prognosis we were promised and hold onto the idea that my daughter’s journey with CRPS will come to an end, that it will resolve spontaneously like the experts said. But this has not been our experience.

And I’ve gone back to study Reuben’s painting of Thetis and Achilles. I pull out the birth photo to show my husband and test my theory. He looks and pauses. “That’s not Sarah, that’s Sam.” That baby in the photo is her twin brother he tells me. “Remember she came out head first.” He points. The baby head down, the right foot bent unnaturally, is not Sarah.

Looking back, I realize that as we stood by the front door, Sarah had realized my fear. The fear of things without an ending. The fear I shut down because an end to her pain is what I desperately want for her, and for me. That night, I held her as she cried and kept quiet. I didn’t try to fix it with my words that had not worked. I let her cry. Then I went to pick up the sleeping pills, and she slept that night and the next, and on the morning after, still in pain, she smiled as she boarded a bus to Mexico.

Andrea Firth is a writer, journalist, and educator living in the San Francisco Bay Area. She is the cofounder of Diablo Writers’ Workshop and has an MFA in Creative Nonfiction Writing from Saint Mary’s College of California. Her essays have been published in The Coachella Review, Motherwell, and The Bold Italic among others, and she was a finalist for the Missouri Review’s 2021 Perkoff Prize in nonfiction. She is currently at work on a collection of essays inspired by a handful of old family photos.