The Only Functional Neurological Disorder Diagnosis I’m Willing to Accept

K Anand-Gall

I’m reading in bed, which I usually do for a half hour or so before beginning my nightly chant practice. Outside my second-floor farmhouse bedroom, the Cailleach fights for the sovereignty of winter, her battle cry an angry wind that rattles the windows and whistles between budding branches of a rotting sugar maple. Our cat Freya Louisa stalks a fly that bounces between bulb and shade in a bedside table lamp, her sister Phoebe close behind on the bed.

Suddenly Phoebe turns, and then flops. Not the kind of intentional flop that cats do when they feel comfortable and safe, but a sudden thunk followed by stillness. It is the stillness that commands my attention, a stillness incongruent with the violence of the outside wind and the frenetic buzzslap of the fly. I turn to see Phoebe stretched on her left side, her right front leg twisted at an unnatural angle and her right back leg slowly stretching outward into a tonic position. Her body begins shaking. Is she having a seizure? A stroke? I move to be closer to her, look into her eyes. They are blank, don’t seem to recognize me. I think I’m watching her die. I pet her gently.

“I’m here,” I whisper, my throat tight. “I love you.” It’s clear to me that all I can do right now is to be with her, to comfort her. After a minute, maybe two, her body relaxes. She seems disoriented, confused. I am relieved when, forty-five minutes later, she turns her head to look at me with her normal inquisitive but slightly concerned expression.

*

In the morning, I text this story to my twenty-five-year-old daughter, who lives now in her own home with her own cats. Her return text hurls me painfully into the past: “Kinda reminds me of you and your seizures. It was so hard to not know or do anything but comfort you.”

Ten years have passed since she found me standing in front of the refrigerator in my robe, my hand stuck clutching the ice bin, my body frozen at the threshold of a freezer. I had been trying to fill my water bottle with ice when a buzzing sensation rolled across my body, a visceral hum. Sound became distorted, a tinny steel in the heavens, an ionized thrum that echoed like a storm. It came like Manannán shaking the sea. The waves tugged the tides of my consciousness from the shore of control until the whole continental shelf of my nervous system was exposed. It came as a crushing column of water, a tsunami lurching toward land, swallowing my shoulders, then arms, then hands: feet of foolish tourists who don’t know to run. My body curled, tighter and tighter, spiraling into a nautilus, abdominal muscles wound and bound by the spring coil of muscle fibers compressing into a full body charley horse.

This image is what haunts me when I think about the year of my life when seizures took random control of my body: me in my blue and white flannel robe stuck in front of the freezer, my daughter ending a phone call with a friend, thrust from carefree high school student into caretaker. I am surprised to discover—looking back at the log that my data scientist and Excel wizard husband had set up to track the date, time, duration, affected areas of the body, and contextual information of each seizure—that it was one of the last I would have. Number 59 in a spreadsheet of tracked seizures that spanned fifteen months.

Number 1 happened in the car of my English department chair who found me “stiff” at my desk and drove me across town to the doctor. Of all the seizures, 36 percent happened at home, 7 percent in the car, and 22 percent in public. Numbers 10, 11, 17, 18, and 19 happened at work. Sometimes I would feel them coming, the buzz and tingle, or an overwhelming feeling of sleepiness, with just enough time to rush to the unoccupied office adjacent to my department chair’s office. I would close the door, turn off the lights, and lie down just in time for the spasms to begin. Sometimes there was not time to leave my cubicle office, and I desperately prayed neither student nor colleague would pass by. Number 58 happened at one of my daughter’s show choir concerts, my husband leading me by the elbow from the awards ceremony to as private a hall as could be found at a high school in a suburb of Omaha, Nebraska. I was embarrassed by the things my body did in public spaces without my consent. Number 35 happened on the table during an acupuncture appointment, Number 4 after a massage, and Number 54 in the eye doctor’s office when he shone bright light in my eyes. They came when I hadn’t yet explained to people that they were happening at all, like Number 19 at Thanksgiving at my aunt’s house, when I suddenly excused myself from the table, my husband hot on my heels, the family wondering if they had said something to upset me. Numbers 50–53 happened in my husband’s hometown of Bangalore in India, his family speaking in hushed tones, his aunt soaking tamarind to make rasam, which was sure to cure all ills.

Number 36 didn’t involve shaking or cramping, but absence. I had been bending down to slide a sheet pan of tomatoes into the oven to slow roast for my husband and daughter’s favorite roasted tomato and basil soup. I was aware of my daughter asking me if I was ok. I said yes. At least I thought I did. I looked up to see her staring at me from the dining table with a horrified look.

“What?” I asked.

“Are you okay?”

“Yes,” I said, slightly irritated. “I told you I was.” She shakes her head, brows still furrowed. “No, you didn’t. I asked you twice and you didn’t say anything. I thought you would be angry if I asked you again.”

“I only heard you ask once, and I answered you.”

She swears I didn’t. “Your body was hunched over like it does when you are about to have a seizure.”

Did she feel then, as I did with my cat last night, as though she might be watching me die?

Occasionally, the seizures made us laugh, like #20, which started with a small cramp in my face that resulted in me snapping my mouth around a corner of toast like the cats snap at flies. I tried to hold onto the joy of the laughter as I slipped between the rock and tumble of conscious thought into the muffled abyss. I heard their hushed words, an instruction from my husband to write down the time. My job, the job I had assigned myself, was to relax into the experience. To not resist. A paradox: relaxing into the tightness, into the full-body charley horse that held me hostage, allowing the contractions to simply be. The whole of my attention was wrapped up in surviving the experience. I hadn’t fully processed, until my daughter texts me—It was so hard to not know or do anything but comfort you—how scary it was for them. I know I reassured them after each episode, telling them how they should not worry, that it wasn’t a terrible experience, just uncomfortable, sometimes painful, but that it probably looked more frightening than it was. Still, the text from my daughter crushes me, the worry of watching my seizing cat fresh in my mind. Could I watch that fifty-nine times?

She’d been anxious her entire childhood that I would die. For the first fifteen years of her life, it had been just us two. When my seizures began, my husband and I had been married just two months. And even though he and my daughter would adopt each other a year later, surely her own psyche must have been twitching with the shift in identity from daughter of a single mom to one that included two parents, one of them still partially a stranger.

*

In one of my early medical appointments during the year of seizures, a physician asked us if there was a pattern to when they occurred—the impetus for my husband creating his spreadsheet. We stopped tracking in detail when subsequent doctors labeled this document anxiety and suggested we were making the situation worse by focusing on it. As a result, 34 percent of my seizures happened in unknown locations, simply because the act of recording them eventually took its own logistical and emotional toll. Surely some went entirely undocumented. If documenting them only made me look crazy to the doctors, why bother?

Instead, we started looking for other patterns, patterns related to physician engagement in what was happening to me. Were doctors more receptive if I dressed professionally or sloppily? If I left my hair naturally wild and curly or if I straightened it? Did we get better results if I went to the appointment alone? With my husband? Generally (and infuriatingly), doctors seemed to take my symptoms more seriously when there was a man in the room to verify the veracity of my statements. But we were living in a primarily white midsize city in the Midwest. Would his presence as an Indian change the quality of my care? In recent years, much research has uncovered the very real impacts on patient outcomes of racial and gender biases in the healthcare setting. But back then, we held these conversations privately. Having already been labeled anxious, we were worried we would sound paranoid if we shared them with anyone.

We noticed that the doctors were reticent to call them seizures, largely because I maintained a degree of consciousness—altered consciousness, to be sure, the world around me muffled and distant, locked out of my reach. We struggled with how to perform the language of what was happening in my body to the medical professionals. Should we even call them seizures? Events? Spells? Episodes?

In the odyssey to figure out what was happening in my brain, we saw ophthalmologists, neuro-ophthalmologists, nurse practitioners, neurologists, psychologists, pulmonologists. I was tested for Lyme disease, narcolepsy, pathogens. They ordered blood tests: CBC, WBC, hemoglobin, hematocrit, sedimentation rate, TSH Free T4, Vitamin B12, folate, C-reactive protein. Each test promised a possible answer: epilepsy, immune disorder, anemia, thyroid disease, West Nile. I spent one full night and one full day in a sleep lab. Every doctor who had salivated over the diagnostic possibilities at first meeting thumbed quickly through reports at the follow-up and delivered some version of “nothing of note” or “no clinical indication.” Perplexed and disheartened, ten months after my seizures began, we booked an appointment at the Mayo Clinic. Right around the same time, I established care with a new primary care doctor, a doctor of osteopathy with a holistic approach.

“Has anyone ever told you that you have a heart murmur?” she asked.

“I was adopted,” I said slowly. I tried to remember what I had been told about the mysterious heart problem my adoptive parents were given no information about. “They thought something was wrong with my heart, so they delayed sending me home with my parents. They kept me in foster care for five weeks while they ran tests. We don’t have any medical records.”

We didn’t have medical records because, at that time in Nebraska, adoptive families had no legal rights to their adoptive children’s medical records. But what about all the doctor’s appointments my mother had taken me to as a child? No country doctor had ever mentioned a heart murmur. Was it because there wasn’t one? Could heart murmurs hide? Did the doctors hear it and think it innocent? If there had been a swish in my heart, why had every doctor I had ever seen stayed silent?

“I think you might have a congenital heart defect,” the doctor said, “and I think it’s causing you to have ministrokes. When you go to Mayo, I want you to ask them to get an echo of your heart.”

This theory shocked us. All this time, we had assumed the problem was in my brain.

*

At Mayo, the doctors did an extensive intake. They, too, seemed disinterested in the documentation my husband produced, which now also included a couple of videos of me seizing. We spent a day shuttling between diagnostic appointments: electrocardiogram, MRI, blood work, and echocardiogram. We ate at an Italian restaurant that night, which gave the trip the cheap veneer of a vacation, though it clearly was not.

The next morning, the morning of my thirty-eighth birthday, I was scheduled for an electroencephalogram, an EEG. The technicians covered my head with goop and attached a nest of electrodes between strands of my hair. They flashed strobing lights in my eyes, made me hyperventilate, and, just like that, I was seizing. They measured and recorded the electrical activity in my brain.

When we left the hospital, we were relieved. It had happened. It had happened in a clinical setting, and now it was clinically documented. We believed we would have answers at the follow-up appointment later that afternoon. Answers seemed like the very best birthday gift I could hope for. We returned to the hotel, where we spent an hour in the pool. My spirit was as light as my body floating in that water, the wooden pool house reminiscent of a Nordic longhouse. All along, I had wished fervently that my story could be a purely clinical one. Through months of suffering, I had wished to be able to tell people: I went to the doctor. I got a test. They saw a thing. They named that thing. They provided me with clean, clear-cut strategies for treating that thing.

But nothing for me, medically speaking, has ever been that simple. Back at Mayo later that afternoon, the doctor explained to us that the EEG was normal. They gave us a label for what was happening to me: functional neurological symptom disorder, a newer and broader term for what was once called conversion disorder. There were other names, too: psychogenic non-epileptic seizures, somatoform disorder. These terms were tidy categories for neurological symptoms that could not be explained by neurological disease or other medical conditions. They said it was common in people who had experienced trauma, such as people who had been sexually abused as children.

I heard it as failure. I heard it as it’s-all-in-your-head. I heard it as something-must-have-happened-to-me-in-my-childhood-and-I-repressed-it. We spent my birthday evening in the hotel room, subdued, me combing my mind for potential repressed memories. Five days before our first wedding anniversary, the night before we would make the seven-hour drive back home to Nebraska, my husband and I read the report. “There is no change on the EEG, and the EEG was normal. This result makes these spells consistent with nonepileptic behavioral events. We believe that these non-epileptic behavioral events are a dissociation of the mind and the body, likely a stress reaction to either acute stress or stress or trauma in the past. Medication is unfortunately not useful for these spells, but cognitive behavioral therapy has been shown to be helpful.”

We searched the internet for more information. Occasionally we ran across a detail related to the heart—sometimes non-epileptic seizures are related to a problem like low blood sugar or the way the heart is working—but more often the information focused on psychological distress: non-epileptic seizures resemble ictal events but are behavioral manifestations of psychological distress that lie outside the patient’s awareness and conscious control. With every sentence, I fell deeper into despair. Over and over again I asked myself the question that has become foundational in trauma-informed care: what happened to me?

I resisted the idea of trauma. I resisted the whole idea of functional disease. It seemed to me a mystical catchall category for all the people with symptoms the doctors didn’t know how to deal with. I attributed it to place and time, a medicine not advanced enough to clinically capture the pathophysiological symptoms I was experiencing. After all, echocardiography didn’t exist until 1953, and the very first application of perinatal echocardiography in the United States was documented only in 1972. It seemed highly unlikely that the diagnostic application of this technology was widespread three years later when I was born with a heart murmur. And even if it had been, would the state have paid for it, given that I was a state ward? So who was to say that the thing happening in my brain and body was not measurable? I preferred to think that science simply had not yet figured out the clinical signals, had not yet invented something capable of measuring what was happening to me.

I thought of an interaction I’d had a few months earlier with a colleague at the college where I taught, a woman who had seen me convulsing in a dark, empty office adjacent to my chair’s office. A few hours later, she put her arm on mine, squeezed, and smiled conspiratorially. “Wedding planning is really stressful.” Though my husband and I had been legally married in a private ceremony for months, we were trying to plan an international wedding tour: a stateside Druid ceremony and a traditional Hindu wedding in Bangalore, his hometown. “Um, yeah it is,” I said, too stunned to resist her implication, but livid at home when I told the story to my husband.

But maybe—I think now, a decade after the event, looking back at that time through my daughter’s eyes—in a way, that colleague was right. Not about the wedding planning, but the marriage itself, the commitment, the attachment. Bessel Van Der Kolk, in his seminal book The Body Keeps the Score, writes, “Early attachment patterns create the inner maps that chart our relationships throughout life.” He invokes the poet E.E. Cummings: “I like my body when it is with your body / . . . Muscles better and nerves more.” What if the simple act of marrying my husband activated a deep-seated, primal fear of loss that was rooted in my adoption?

What happened to me? I was adopted. Dr. Bruce Perry, a brain development and trauma expert who co-authored the book What Happened to You? with Oprah Winfrey writes, “The experiences of the first two months of life have a disproportionately important impact on your long-term health and development.” Was the trauma that I couldn’t remember the trauma of loss, the culmination of multiple separations? In a culture that glorifies adoption as a perfect solution, such a possibility was more than unpalatable. With each broken attachment—my first mother and then my foster mother—my body learned to inherently distrust the extended presence of other bodies. My body waits for the other shoe to drop. My body waits for absence. My body has learned that to attach is a dangerous thing—not because the people associated with those attachments are mean or bad or neglectful, not because there is no love, but simply because the attachment is broken and broken again. To commit to marriage was to attach, something I had successfully avoided my whole life. Maybe marriage itself was causing me to dissociate, to leave my body. Maybe my diagnosis was less functional neurological disorder, and more disordered attachment. Had I passed that fear onto my daughter? Was her persistent fear of losing me a terrible kind of intergenerational legacy?

When I followed up with my new doctor, she focused not on the words “functional neurological disorder,” but on a small detail barely noted in the report: “Echocardiogram showed a redundant atrial septal flap with a small-to-moderate, right-to-left shunt with Valsalva. The patient will follow up with this with her primary care physician. This may be what they found when she was an infant that was of some concern at that time.”

She tapped the report. “This is exactly what I thought we’d find,” she said. The only mention of a functional neurological disorder she made was to suggest that the physiological stress of what she called “ministrokes” was traumatic to my body. She referred me to a cardiologist to get about the business of closing the hole in my heart, which she hoped would prevent any further strokes.

Again, things were not that simple. A formal neurological consultation is mandatory prior to any PFO closure; both cardiologist and neurologist must sign off on the procedure. “To date,” researchers note, “stroke in the setting of a patent foramen ovale (PFO) is one of the only few disease processes wherein stroke neurologists and cardiologists closely collaborate.” My cardiologist was on board to close the hole in my heart, but the neurologist—a senior physician at the only neurology practice in town—held a contradictory view about managing patients with PFO. Because I was only thirty-eight, because my symptoms were atypical, and because I had none of the usual risk factors for stroke, he was reluctant to classify the spot in my brain as a stroke.

In short, he wouldn’t sign off on the closure.

“Closing the hole creates its own risk,” he warned. He had seen firsthand, he told us, the consequences of getting what you wish for: a woman who just happened to be my exact age, who just happened to have migraines like me, who just happened to have a hole in her heart, who just happened to convince her doctor to patch it (insert dramatic head shake), and who just happened to have another stroke as a result of the procedure—a stroke that killed her.

I shifted my hips, the exam table butcher paper crackling, pulled from vinyl, stuck to the sweat of my thighs. His narrative felt too precise, his parable too contrived.

“Can you put it in numbers?” my husband asked, seeking the precise measurement of risk. He is scientist, not storyteller. His mind seeks numbers, not imagery. His question pinned the neurologist down to percentages.

“Two percent,” the neurologist finally concedes.

Risk like milk. Something real I could swallow.

Thirteen months after the stroke that began my year of seizures, days after my husband and daughter adopted each other, the cardiologist closed my PFO. Pressed with quantifiable measures from a transesophageal echocardiogram about the actual size of the hole in my heart (quite large, in fact, the neurologist said, suddenly on board) and accompanying septal aneurysm—a fancy name for a floppy, unstable wall between the upper chambers of my heart—my neurologist finally signed off on the procedure. My daughter didn’t come to the hospital. She was still terrified I would die.

*

After the hole in my heart was closed, I had no more seizures. No more migraines. No more strokes. It seems likely my episodes were, as my new doctor suggested, a physiological trauma from my stroke. And yet, I can’t entirely discount the possibility that the commitment of my new marriage did in fact trigger a psychosomatic expression of a lifelong pattern of disorganized attachment.

Or might I implicate a culture in which marginalized people’s experiences of their bodies are discounted, minimized, or flat-out ignored?

“It’s a long way from your heart,” my adoptive father said to me throughout my childhood, so many times that I can’t pick out the particulars. It happened when I had a headache, when I tore the skin open on my lower back after catching it on the wire spring of a broken irrigation sprinkler head, when I broke my ring finger taking my sister sledding, when I tore my meniscus in freshman basketball. He said it when I curled up on the bathroom floor with an ovarian torsion, hours before emergency surgery.

“It’s a long way from your heart” was his catchphrase, second only to “it’s non-arbitrable.” He pronounced it non-ar-bi-TRATE-able, the way some people say they get heart palpations, instead of palpitations. I didn’t know he was mispronouncing it then. But the messages were clear:

I know more about your body than you do.

What your body experiences is insignificant.

I have the final say.

The bulk of my medical appointments reinforced the message that someone in power knew better than I did what was best for my body. I felt gaslit by the medical community.

In functional neurological disorders, the body expresses psychological conflict when the individual is unable to communicate distress effectively. When no language is available, the body must become the voice. As an infant, I had no language for the attachment trauma I experienced. As a child, my complaints of hurt and discomfort were dismissed by my family. As an adult, my symptoms were minimized, overlooked, or outright dismissed by medical professionals.

In the abstract for a research paper on gender differences in functional movement disorders, researchers write, “Functional neurological disorders are generally more common in females than males, but the reason for this gender difference is not well understood,” and I think: Idiots! It’s obvious!

With this, I stop resisting the idea of trauma. I stop resisting because a lack of trauma-informed care contributes to trauma. I stop resisting because my body intersects with so many bodies— these adopted bodies, these female bodies, these queer bodies, these transgender bodies, these brown and black bodies—that have something to say about this culture, and they can stay silent for only so long. We won’t hold this in any longer. The only functional neurological disorder diagnosis I’m willing to accept is one that critically examines how the bodies of the marginalized are read.

This is the manifesto I come to the morning following Phoebe’s seizure, as I sit on the couch and scroll through all those decades-old spreadsheet seizures, trying to imagine each one through my daughter’s eyes. It was so hard to not know or do anything but comfort you. Phoebe is back to normal, no sign of ictal distress, nestled into her favorite spot: the blanket-covered furrow between my knees. “I like my body when it is with your body,” I coo, stroking her head to tail. She nudges her face into my hand.

My daughter texts me a photograph in which she is wearing my old blue-and-white flannel robe, the robe I spent a lot of time in during my year of seizures, the one I was wearing when stuck in front of the freezer. When I had first offered her the robe a few months ago, she responded in all caps: “I HAVE ALWAYS WANTED THAT ROBE!” Along with the photo she sends today, she writes, “I am comfy in your robe. I feel surrounded by your love. It’s like a big hug from you.” Her full face isn’t in the frame, just her lips, chin, torso, and a bowl of chicken noodle soup. What will strike me is the shape of her mouth, the tint to her lips. For a moment, I think it is a picture of me. As an adopted person, I’ve never felt such a powerful kind of being with another body: my own image reflected in another being. Looking at the photo again, my heart aches for the distress she went through during my year of seizures.

But then I remember a conversation we had when we’d met recently for dinner—that I taught her how to listen to her body, how to trust it. Her words are my first indication that I have the capacity to interrupt a pattern, that I can forge a new path, that I can mobilize the trauma, the distress, and the discrimination I faced toward a greater good. Her words fan embers of action in my patched-up heart that will, in the coming years, inspire me to leave academia and become a clinical social worker, joining a healing justice movement that addresses the complex individual and collective grief and trauma caused by racism, gender inequity, transphobia, and the child welfare system. One day, when I am charting diagnoses, I will read the bodies of the children and families who are trusting me to help them make meaning of their suffering, and in doing so, I will make greater meaning of my own.

K Anand-Gall (she/they) is a former academic who is completing training to become a trauma-informed clinical social worker who works with children and families. Holding degrees in Creative Writing from Miami University and San Francisco State University, K's writing is forthcoming in Gargoyle and Bull, and has appeared recently in Apple in the Dark, MUTHA, Glassworks, voidspace, Thin Air Magazine, The Journal, and Rooted 2: The Best New Arboreal Nonfiction. They are the 2023 Academy of American Poets Betty Jane Abrahams Memorial Poetry Prize winner. Find K on the socials @kanandgall or at kanandgall.com.