“Let a sufferer try to describe a pain in his head to a doctor and language at once runs dry … He is forced to coin words himself, and, taking his pain in one hand, and a lump of pure sound in the other … so to crush them together that a brand new word in the end drops out.”
—Virginia Woolf, “On Being Ill,” 1926
Eyes:
Color is disturbed, illuminated, pastels turned neon. Tomatoes become sickening, glistening red, overwhelming. Eyes transfixed, I stare, choke down a gag. I turn to friends beside me, pointing in shock at the shift in hue. Incandescent, confused faces stare back, releasing words in the shape of disagreement, of concern.
After months, I finally call my Primary Care Physician, a pediatrician I outgrew the year before. Alone in her office, I pull up Instagram, shifting through the filters to show the change in color that happens internally. She frowns, shakes her head. We both look to the empty seat where my mother should be, COVID relegating her to the car. My pediatrician shrugs and asks about pain.
I tell her that a couple of weeks ago, just before my 20th birthday, the shift in color was accompanied by shooting pain behind my eyes and just above the bone bump in the back of my head. I tell her that Tylenol and Advil and Aleve and Motrin and Excedrin don’t work. I leave the office with a slip instructing me to take 4 ibuprofen, to keep her updated on my journey of self-medication.
Brain Tissue:
When my body begins to move on its own accord, I visit my pediatrician. At 21, I’m too old to still be seeing her, but picking a new doctor is more uncomfortable than seeing someone you can reliably distrust. I insist that my mother be in the room with us. As I describe the shooting pain in my head, my wrists begin to twist, rapidly, back and forth. My doctor eyes my mother for confirmation that this wasn’t an act, an unsubstantiated ploy for attention.
When my mother says, “Sometimes when I talk to Faith about pain, there are moments where I think she could be faking it, when her face doesn’t crimp the ways it should when someone’s hurting.” My pediatrician smiles, but my mother continues. “Except then I have to remind myself that she’s been in pain for the past year and a half, that it’s something she’s just used to.”
At the end of the appointment, my pediatrician tells us that she thinks it’s something really very bad, something that she can’t bring herself to say out loud until she sees pictures of my brain. She can’t schedule the MRI; I will have to wait for someone to call me on an unspecified date at an unspecified time. Hand on the doorknob, she asks if I have any questions. I sigh.
FAITH: “At what point do I need, like, to go to hospital?”
Her mouth twists.
PEDIATRICIAN: “If one side of your body gets really weak, if you start slurring your words, if you have trouble hearing or seeing, or if you’re in the worst, most unbearable pain you’ve ever been in, you should go to the ER.”
FAITH (bored, frustrated): “So, if I have a stroke?”
She doesn’t look me in the eyes, focuses on the wall just above my head.
PEDIATRICIAN: “Yes – I don’t want to scare you, but yes.”
Three days later, I’m admitted to the ER, slid into a CT scanner. Patient has no evidence of stroke. I’m released and scheduled to meet a neurologist on call. Her office is bright and clean and in the city. The appointment is an hour and a half long because she’s thorough, drawing evidence and experience out of me, out of my mother’s memories of my childhood. As we near the end, she brings up the black and white photos of my scan on her desktop, adjusts the view to full screen.
TEMPORARY NEUROLOGIST: “Perfect!” She zooms into the gummy parts of my brain, turning, looks me in the eye. “Your lobes are absolutely beautiful!”
Part of me wishes that something more pressing was wrong because she only sees patients whose central nervous systems pose a threat. I thank her. In the car, I sit on my hands to keep them from writhing.
Skull:
The pain exists here, has taken up residence in my bones. I know, technically, that migraine lives within muscle, in brain tissue making false connections, but I imagine pain as a structure, as a solid. Muscle, like water, will shape itself to the environment that it’s in, will change forms to fit its container. My pain is rigid: a migraine is a migraine at home and at work and at school and at the doctor’s and at the grocery store. A migraine doesn’t know the concept of weekends or holidays, of breaks. A migraine only knows itself.
When I imagine warping my body to wring the pain out, it’s my skull I imagine remolding. I screw my head off like a bottle cap. An extreme: after breaking the ice that’s formed at the surface, I plunge bone into crisp water, freezing pain. Another extreme: the skull is sacrificed at a bonfire, flame screeching as it devours the wet pocket of pain. Another extreme: fingers through eye holes, I bowl my disembodied skull down hardwood floors, disoriented pain shook free.
Migraine becomes the unit of imagination, the vessel of creativity. Rigid edges are softened by dreams, by humor, and pain becomes bearable.
Nose:
Migraine shifts perception of senses, reframes sense of smell. In my room, door closed, I can smell what my roommates are cooking in the kitchen, aroma wafting through hallways and shared spaces. Smell tracks movement. I can measure when coworkers leave rooms based on how much their perfume has faded. Nose can pinpoint the location of mold in rented grad school shared home, can determine if yard sale items are safe to integrate into the rest of loved collections. Nose is refined, a stronger sense. A tool.
Yet, nose activates gag reflex if someone on the other side of a restaurant orders heavily sauced pasta, if someone sharing space bathed themselves in cheap cologne. Smell, responsible for 80% the of perception of taste, underscores chemical preservatives, restricts access to fast food. Flavors are purified, distilled. A world encountered through absolutes.
Jaw:
When I’m on the third day of migraine, my jaw aches. Muscle becomes sore, tender, as if I’ve been chewing pounds of saltwater taffy, tongue turned blue and pink and orange by the dye. I suck on mint gum, slide it under my tongue. The gum is sharp. The gum distracts.
I open my jaw as far it goes, press my thumbs just below the bone. The discomfort doesn’t stop the pain but changes it, makes it sting. Pain is temporarily redefined, controlled. Managed.
When my jaw aches, I know the migraine will persist, that before the day ends, I will find myself with frozen peas on my face, lying down on the kitchen floor. I know that I will have to take a freezing shower to feel ice touch scalp. Jaw pain is a premonition, a warning, an omen emanated from bone.
Vocal Cords:
My lips part. Sound emerges. In the language of myself, I hum, wait for the moment to pass. Speech sticks to muscle, doesn’t articulate. It would be an oversimplification to say that I keep intangible thoughts inside. Things function independently; lips make word shapes, tongue undergoes morphological aerobatics, vocal cords vibrate, but not at the right pace. If I close my eyes, I can see the shape of the ideas I’m trying to convey, something colorful and rough, a swirling mass of space. I cannot reshape it into language.
When I’m 20, I reluctantly tell my first neurologist. He frowns, says it isn’t significant.
No evidence of transient aphasia.
Neck:
Pain travels in the medium of neurotransmitters, chemicals circulated by the central nervous system. I can only imagine this passage as something personified: bundles of autonomous nerve cells line themselves up inside me, “take one and pass the rest down” until every last unit is holding a small shard of pain in their cupped hands. Different types of pain consist of different proteins: inflammatory pain and neuropathic pain and migraine pain can be represented as different colored shards. There is no limit to how many shards each cell can hold.
All forms of pain treatment are designed to impact this motion. Over the counter drugs like Tylenol and Advil target the production of pain proteins in the brain, limiting the number of shards that get passed down through the nerve cells. If this is not successful, more aggressive treatment alters the nerve cells themselves, freezing them. Pain cannot be held if cupped hands cannot raise to receive it.
Most migraine treatments are stumbled upon accidentally. In the months following cosmetic Botox treatment, many patients noticed that their chronic migraines dropped in frequency and severity. Additional research illuminated the impact: botulinum toxin is a successful anti-aging agent as it “freezes” nerve cells, prohibiting the motion of muscles and reducing the underlying cause behind wrinkles. In doing so, the stunned nerve cells are also prohibited from holding pain. In the case of migraine, a higher dose is needed, an expansion of the terrain of treatment: 31 injections are deposited in constellations across the forehead, scalp, neck, and upper back. Each prick is sharp, defined. Each injection carries the pain of vaccine.
Despite the success rate, Botox injections are another compromise with the self. In the day following injections, the pockets of Botox cannot be touched. The Botox cannot sit lower than the heart. The Botox cannot be run under water, cannot be lathered with shampoo. The Botox cannot be put under any strain, the body restricted from performing strenuous activity and experiencing excessive heat. Botulinum toxin is one of the most poisonous biological substances in the world, with a single crystalized gram holding the capacity to kill over 1 million people via inhalation. If prodded within 24 hours of injection, Botox can become displaced; if it floats to the heart, the patient will suffer a massive heart attack, most likely resulting in death.
By February of 2022, I have run my way through almost all of my options for treatment, everything but Botox. My early days post-Botox are marked with splotches of red pain, with bags of frozen peas balanced over eyes, the weight boring into the pain. It takes 124 injections over 12 months before I feel any type of relief.
Part of me hopes that syringes filled with clear liquid will join the pile of failed treatments, that this intensive and risky plan that starts with more pain won’t work. After a calendar year, I begin to feel extended moments of relief: I use my knee brace, an aid to control aura, sparingly, I feel comfortable being in classrooms for longer periods of time, I don’t feel a rapid urgency to register myself for university accommodations. For extended moments, I’m stilled.
And yet, I find myself missing the constant dull ache of pain, the nightly delusional voice memos to friends, the solace of a completely dark, silent room. I had carved out a place in myself to hold pain, had checked in on it daily, had felt it curl up inside me, but without pain’s full weight, I felt hollow. I felt pain’s gap like a forgotten ring or watch, the discomfort of skin suddenly able to touch itself. I mourn my loss of routine, worry about the introduction of the unexpected. A weight had lifted, but skin and bones and muscle felt heavier. Fluctuating pain is a relief, a reintroduction of a part of the self, a homecoming. I had tied too much of myself to migraine, had muddled the boundaries between symptom and personality.
I still do know where I end and migraine begins.
Ribs:
Before the onset of migraine, earlier in personal history, I find pain rooted in my chest, sticking to ribs. At 19, I grit my teeth for a month until my parents visit me in college. We go to lunch, and I barely finish half a sandwich, three fries. I try to explain that anything more expands stomach too much, places too much pressure on the parts of me designed to confine. I am dragged to the doctor and wait three hours to be seen.
At the health clinic, my blood and urine are tested, medically deemed clear. I am about to be sent home without answers when, as a last-ditch effort, the PA jabs her finger into the cartilage between my ribs. I gasp, flinch, retract. I am instructed to self-medicate with Advil, to press ice against skin. The aching is referred to as costochondritis, as an inflammation of cartilage that typically affects women old enough to be grandmothers. I’m told to wait things out.
The pain persists, flares up. I sustain myself on bowls of oatmeal and plates of French fries, the only easily accessible food that chokes down easy. Over the course of five months, I lose 40 pounds.
The next time I visit the doctor, I’m praised for my figure.
Gut:
In the spring of 2021, I begin to lose faith in my first specialist, the neurologist recommended to me by my pediatrician when I grew tired of self-medication. Every month, I would run into appointments 5 minutes late, racing to the plastic chair in front of his desk. Every month, I would tell him my new symptoms: the pain that had maintained itself since my last appointment, the loss of words, the dizziness, the nausea, the bouts of uncertain delusion where I acted drunk for hours on end. Every month, he would scribble down notes, missing half of what I had said, and prescribe me something new.
From January to July of 2021, I was given butalbital-acetaminophen-caffeine (50-325-40 mg), Topamax (25 mg), Rizatriptan (10 mg), Zonisamide (50 mg), Gabapentin (100 mg), Zolmitriptan (1.25 mg), Emgality (120 mg), Cymbalta (60 mg), Ondansetron (4 mg), and Ubrelvy (100 mg). To supplement, I was instructed to take Tylenol (1,000 mg), Advil (400 mg), Aleve (440 mg), Melatonin (6 mg), and Benadryl (25 mg). I shoved ineffective bottles into my vanity until the drawer, clogged, couldn’t close.
With each new bottle of pills, my trust in my neurologist dwindled. Every night, between swallowing pills and falling asleep, I scrolled through descriptions of different types of migraines online. Whatever I had was intractable, had slowly swan-dived into chronic, but the specific nature of pain was unclear. I read research of migraines with and without aura, accounts of patients with vestibular and menstrual and abdominal and episodic migraine. I looked for language in the shape of myself.
I circled around descriptions of hemiplegic migraine until I could recite the symptoms: motor weakness in one side of the body and aura manifestation consisting of hallucinations, skin tingling and numbness, and impairment in speech. My fingers lingered on the screen, sopping up information. Eyes were stamped with data, with statistics. Hemiplegic migraine is one of the rarest forms, with a diagnosis rate of 0.01%. The vast majority of diagnoses are hereditary; pain will be echoed in a direct family member, but sporadic cases live in mutations of DNA. With age, it’s possible the symptoms will slowly emerge, most frequently in the first two decades of life. My research was independent, solitary, an isolation in experience.
At 20, there was something about the condition that stuck. The key qualifier for the syndrome is hemiplegia, the loss of strength on one side of the body. That is to say, half of the body will be unable to hold itself up. Despite not having experienced this, the shape of the word in my mouth resonated. Something deep inside was struck, saw itself reflected.
Before my migraine resided in my skull, dug deep into the genetics of bone, whispers lived in my gut as an omen.
Arm:
Weeks after their onset, my erratic movements are diagnosed. I’m 21. The causality of symptoms is determined, concise. Under bone, migraine has brewed for two years. A movement disorder specialist describes them economically.
He sits, leaning back in a small, wheeled doctor’s stool.
MOVEMENT NEUROLOGIST: “I think the movements, the tics, are indicating that something’s wrong, that your body has been undergoing strain for too long.”
I nod, processing.
FAITH: “So, kind of like a check engine light?”
He grins excitedly.
MOVEMENT NEUROLOGIST: “Bingo! The treatment’s just more of what you’ve been doing – fix the migraines, and you’ll fix the tics.”
The tics love my arms, dig into muscle, take up space behind skin. When I stay up late Googling, I learn that need for movement is described as something like a sneeze: it can be held in when needed, but sound is replaced with pain, with vibrations under skin.
I imagine my tics as puppetry, as possession. Arms and legs and neck and hands and feet are strung with invisible wire, controlled by a silent and invisible third hand. My puppet is jointed, mobile, can make all the same movements as me, but when migraine lives in my left knee, the weakness renders that joint immovable. Hemiplegia pauses tics. Pain reinstates autonomy.
In September of 2021, I am asked to record the motions, to gather evidence for my next appointment with the movement disorder specialist. I informally record my arms folding in on themselves, my legs twitching under desks in class. When alone in my dorm, I let the camera run for longer. Propped up on dirty coffee mugs and stacks of books, I watch my lips tuck and crimp, my mouth grimace and stretch, my eyebrows raise, my eyes force shut. On screen, my arms compress and shake, my wrists spin, my hands force fingers into the “hang ten” sign. When my legs buckle, I fall out of frame, only to hoist myself back up seconds later. Several complex motor tics in a row linguistically become a tic attack, an enemy infiltrating, outside force posing aggression. Language pits the body against the self.
After showing the new doctor, I’m unable to delete the videos from my phone. They take up too much space, data that could be reserved for pictures with friends and family, but I need to be able to bear witness, to verify that on September 11 and September 14 and September 28 and November 16 and December 9, I lost control. Tics morph over time, new movements replacing older iterations in my body of work, but when the tics see themselves on screen, they manifest, reflecting a version of myself that existed 2 years ago, when I was 21 and soaked in pain.
This representation is pointedly different from migraine, from pain that does not materialize visually. Tics quantify pain, introduce new metric. Doctor’s measurements are imperfect, are rooted in the believability of self-reportage, but a body thrown into acrobatics by internal desperation is palpable, is inherent. I cannot erase proof of experience, keep it close, use it as evidence of condition. Motor tics lack dialogue, but they still speak.
Lower Back:
The pain cannot exist in a vacuum because life outside of pain exists. I wear my favorite shirt to my job at the museum and to my best friend’s birthday dinner. This does not make these two geographies intrinsically connected. The same is true for sensations. To say that I was in pain at my job at the museum and at my best friend’s birthday dinner is to communicate that I was present at both events. The pain does not define the experience. I do.
Migraine cannot touch the small of my back. Aching pain is caused by frumpy posture, by overloaded backpacks, by fluctuations in hormones. Lower back pain is an effect, a result, a consequence. The new pain is refreshing, a reminder that other parts of body exist. The pain is a conduit for self-reclamation.
Uterus:
I go to a new gynecologist when I’m home from grad school in the summer. This decision is made for me; I have to drive further out, perusing the only sick appointment. On the drive there, I practice my lines: I’ve just turned 23; a couple of months ago, I got my period four times over the course of six weeks; I went to the doctor at grad school, and she cracked me open with a speculum and told me that my “uterus looks beautiful, so fleshy and pink!”; She recommended tests, but my school health insurance wouldn’t pay for them; I stopped taking my birth control; the bleeding stopped, but my periods are infinitely more painful; I need imaging.
I’m instructed to strip from the waist down, to barely cover myself with an itchy hospital gown. I tell the new gynecologist about the blood that’s been seeping out of me, about the sharp abdominal pain that’s followed. She looks me up and down and asks why I need the birth control, mentioning that, really, an IUD would be easier for me.
I cross my legs. I mention that I have chronic migraines, that I need to be able to stop taking medication at any point in time. She pushes, saying that my potential to get pregnant will decrease. I use my buzzwords, sprinkling patient agency and chronic pain and neurologist. I explain that I’m not at risk of pregnancy but need the progesterone to help manage migraine. She starts talking about IUDs again, highlighting how convenient and popular and sexy they are. I want to ask if she recommends that I reach my hands inside myself to rip it out, if she’s suggesting that I relinquish control over my flesh. Instead, I stare at the wall.
FAITH (frustrated, ignored): “Is it reasonable to just go back on the progesterone and see what happens?”
She pauses, mouth smiling.
GYNECOLOGIST: “You know what – that’s a really good idea! I never would have thought of that.”
As she slips her hands into blue plastic gloves, she sighs.
GYNECOLOGIST: “You know, a lot of women think that their pain won’t go away for a long time. They’re like damn, I don’t think I can wait until menopause for this pain goes away – I’m here to remind everyone that sometimes, you just wake up in the morning, and you never have a migraine ever again! Menstrual migraine can just be like that.”
Before I can correct her, she smiles at me, motioning for me to open my legs. They’re too long; the chair needs to be adjusted. I’ve never felt so small.
Speculum in, twisted, she tells me everything looks normal. She removes it, replacing it with her finger to check for cysts, for swelling.
Leaning in, face inches from mine, she smiles.
GYNECOLOGIST: “I’m sure you’ve made a lot of great friends in Virginia! How are you liking it?”
With her finger still inside me, I grit my teeth. I think about how I haven’t mentioned the geography of grad school, that major life changes have passed by unsaid. I picture descriptions of my personal life printed on medical records beneath hemiplegic migraine diagnoses, beneath lists of prescriptions. She pushes down on my stomach.
She refuses to order imaging, mentions that sharp, frequent pain is normal, natural. I slide my pants back on and drive to work.
A coworker asks me how my appointment went. He smiles well-meaningly, and I return it. “Good.” We nod. He forgets, repeats his question several times. With each probe, I reconsider, processing information and my reactions. (This, like any pain, should be kept internal.) He asks – I remember feeling overwhelmed. He asks – I remember the false promise of waking up without pain. He asks – I remember her finger inside me, her smile. “Good.” We nod. I cry on the drive home.
She is feeling more “hormonal,” and she is more likely to cry.
Buttock:
Migraine as a condition is understudied, despite being the third most common medical phenomena globally. This is an issue of gender – women are three times more likely to experience migraines than men. In institutionalized settings, feminine pain is measured through the metric of desperation.
When I’m 21, after finally receiving a formal diagnosis of hemiplegic migraine, I read online that Diet Coke can shock the body out of pain. In my undergraduate dining hall, I drink as much Diet Coke as possible. I drink a can of Diet Coke while waiting for my tea (two tea bags) to steep in the morning, swallowing Clonidine (tics), Amitriptyline (migraine), Fioricet (pain), and Benadryl (allergies). I nurse a can on the way to class, during lunch and dinner. The process is repeated, resurrected. I drink over 404 mg of caffeine daily.
The thought of Diet Coke, the imagined taste on tongue, is motivation to crawl out of bed in the morning. When I fall apart in the evenings, face twitching, wrists twisting, elbows snapping open and shut, Diet Coke returns body to resting state. I would be the first to recognize that Diet Coke tastes like chemical waste, that carcinogenic aspartame throws things off-kilter, but the idea that a subtle change could be revolutionary, could be treatment, was enough encouragement to start and not stop.
At the diagnosing neurologist, the medical student checking me in didn’t pay much attention to the Diet Coke in my hands, instead placing pressure on other parts of my history:
MED STUDENT: “How often are you taking the Fiorcet?”
FAITH (candid, captivated): “Every day.”
He pauses, eyebrows furrowed.
MED STUDENT: “Like, every day, every day?”
FAITH: “Yea … they said to take it whenever you’re in pain, and I’m in pain every day, so I take it in the morning regardless of how I’m feeling.”
MED STUDENT (hesitant, careful): “Have you been to the ER recently?”
He looks to my mom expectantly. She shrugs.
FAITH (confused, unsure, cannot read where the script is going): “Not since over the summer – I had this thing where they thought I was having a stroke, but I –”
He cuts me off.
MED STUDENT: “If you don’t take the Fioricet, do you feel like you need to take it?”
His eyes are trained on mine, searching for weakness, for uncertainty.
FAITH (laughing): “Nah, I’m not like hooked on it or anything.”
I take a sip of Diet Coke.
MED STUDENT: “Stop taking it every day.”
I make a face at my mom.
FAITH: “Ok, cool.”
She fills in the space.
MOTHER: “Is it habit forming?”
He releases a breathy laugh.
MED STUDENT: “Incredibly.”
When I graduate a couple of weeks later, in the winter of my 21st year, I decide that I don’t want to financially support my Diet Coke habit, elect to cut back. Diet Coke becomes an emergency supplement, a can to dust off once a week when pain roots itself again. I keep a case in my car, and it explodes when it freezes, butterscotch stains creating constellations in the trunk. I microdose.
In the spring, I see a fifth neurologist for a second opinion. My caffeine habits are questioned. I panic and lie, reducing my actual amount by half. She blinks, stares at me in disbelief. “I wouldn’t advise that – have you considered meeting with a nutritionist?”
Patient self-medicates with Diet Coke.
Desperation the second time is cleaner, less addictive. Reluctantly, I drag myself to the chiropractor, a suggestion from my mother. She had read a study on the importance of precise posture with migraine, on the pain that comes with bending.
Body laid out on the table, we talk about the cyclical nature of pain. The chiropractor is surprised by how poorly aligned my spine is, how far it’s strayed from its course. He taps it back with a pressurized gun that clicks with each adjustment. He says that he thinks the frequency of the pain could have something to do with my crooked neck, with the blood vessels rerouted beneath skin. The gun clicks. He says that my spine is half an inch off from where it should be. The gun clicks. He says that to fully adjust my back, he needs to push into the fat of my ass. He is uncomfortable. I am not. The gun clicks.
I go to the chiropractor twice a week for two months and find no relief. The inherent humor in the desperation, in the moment where adjustments were a feasible cure, is enough to pursue alternative treatment.
Hands:
When Alice falls into Wonderland, she finds that her body doesn’t fit into predetermined architecture, form transformed too large and too small. For Alice, these changes are intentional, planned sizes used as a conduit for agency, for self-rescue. Yet sometimes, off the page and out of Wonderland, changes in the visual perception of the self happen organically. Sometimes, hands and face appear altered, appear intrinsically changed. Alice lends her name to this medical phenomenon, represents something bigger than herself. In 1955, “Alice in Wonderland Syndrome” was coined, fiction transformed to medical terminology, to describe an altered, disproportionate view of the self. Those with the condition will suddenly become confused with the size of specific parts of the body, fixtures understood to be too large or two small without any measurable difference.
I look down to my hands and laugh. I hold them up to friends remarking on how strange they look, how unhuman. Rationally, I know they are unchanged, but something deep inside is convinced that my hands have been traded, swapped with something built in a laboratory, something alien, hands dipped into the river that bisects the uncanny valley.
Hands can be hidden, can be tucked into pockets or sat on, body pressing down on the untrue parts of itself, but the face is a constant, cannot be ignored. Some nights, when I wash my face, glances into the mirror become more permanent, and image sticks to glass. I become transfixed. Trapped in my own eyes, I lose time, having to shock myself out of routine by running hands under cool water from the tap.
When something inside shifts, the body becomes artificial. The present body, one with rational thoughts and perception and beliefs, disintegrates. Personhood dissolves. Only the body remains.
Scientists rule that the change in tactile perception can be manifested, that Alice in Wonderland Syndrome can be artificial, brought to front through the use of hallucinogens, LSD. The natural cause is unclear, either a result of abnormally high or abnormally low blood flow to the brain in areas that receive and understand texture, understand auditory perception, understand the passage of time. A shift acknowledged without causation.
Relief is derived in the treatment of migraine, in the resolution of pain. The prevalence is unclear; patients remain silent, reluctant to invite misdiagnoses of psychiatric disorders. Statistically, women are more likely to experience faults in perception. Statistically, women are more likely to be misdiagnosed.
While experience predates 1955, predates the establishing text’s publication in 1865, early descriptions only existed in the Latin of scientific terms, as micropsia and macropsia. Language is inaccessible, distanced. Most adults only recognize the condition in themselves when their children, existing outside the language of medical hesitancy, are diagnosed.
When Alice returns home, body aching from adventure, she tells her sister it was all a dream.
Fingers:
: “Sit on the examining table, legs hanging. Good. With your finger, touch your nose, touch my hand, touch your nose, touch my hand, touch your nose, touch my hand. Good. Follow the light with your eyes, 1, 2, 3. Good. Look to the wall, don’t pay attention to the light shining in your eyes. Good. I’m going to touch your face. Does it feel the same on both sides? No? Ok. Smile. Good.”
: “Hold your hands out in front of you. Push as hard as you can against me. Good. Flip your arms around. Push. Good. Hold my hands.”
Remember to wipe the sweat off, the clam out.
: “Squeeze. Good. Hook your arms, pull against me.”
: “I’m going to hit your reflexes, both knees. Again. Again. Again. I don’t know why I can’t get this one, let me try again. Jesus. Again. Again. This is so weird, just a formality. I can get it, I promise. Again. Again. I’m normally really good at this. Huh. Jesus.”
Kick your leg, slightly, just to see satisfaction wash across face.
: “Ok, finally! I was a bit worried there. Ha.”
: “Stand up. Walk to the other side of the room. Try to walk in a straight line, no, don’t follow the line the tiles make. Ok. Again, on tip toes. Again, on heels. Spin in a circle, no, faster. Close your eyes. Walk forward, try to do it straight. Ok, you can sit back down.”
: “Is your blood pressure normally this high?”
Thigh:
Her first semester of med school, my friend Madison texts me in the middle of the night. She explains that, for an exam, she has to pretend to have an illness for her classmates to diagnose. She asks to borrow mine. I cackle and immediately agree.
The next time we see each other, we’re sitting on a bench, thighs touching. She leans forward, laughing.
MADISON (delighted, smiling): “Oh my god, ok, so, I go in with all your symptoms – my leg feels weak, my head hurts, I’m having trouble talking, I’m dizzy, I’m nauseous, and my vision is impacted. We sit there for the maximum amount of time, and nobody is getting it. Finally, I explain that I’m performing hemiplegic migraines, and I know it well because one of my friends has it, and everyone got annoyed and said I picked something too obscure because, like, who even has something like that. They called me annoying. I just laughed.”
I laugh, proud that the parroting was impactful. Our shoulders crash into each other.
FAITH (excited, much too loudly): “In like, 20 years, they’re going to get a patient with hemiplegic migraine, and they’ll have fucking flashbacks.”
Knee:
The hemiplegia roots itself in my left knee. This one-sided weakness isn’t standard across diagnoses – hemiplegic migraine materializes differently in each case, each experience. When hemiplegia is cemented in my knee, I wrap myself in aids designed to constrain; a tight knee brace replaces stability that should be inherent. The hemiplegia changes my gait, left leg extending slightly less than my right, body placing slightly less of itself on untrustworthy limb. Like other types of migraine aura, the hemiplegia is only supposed to stay for a maximum of several days, but I feel it spread, feel my left elbow and wrist slowly lose strength. I drop things. The body understands that something is wrong. I tic.
In 2022, it stays for weeks, festering. I see a fifth neurologist, get a second opinion. Sitting in the chair next to her, I chronicle everything, from the onset of aura in 2019 and the emergence of pain in 2020. I describe the quality and location of pain and the symptoms that come with it. I have the terminology for dizziness and technicolor vision, for confusion and aphasia, but towards the end, I invent:
“Delusional” by which she means that she notes that her voice is higher, and she is off balance and does things that are “not smart” and acts impulsively but not in a self-harming way.
I hear myself, throw in hedges and qualifiers. The symptoms must be serious enough to warrant note but not dire enough to elicit further institutional action. I tiptoe.
I’m rewarded. Mental Status: Alert, orientated. Able to relate history without difficulty. I think of my body as an artifact, as a relic. I have dreams where my brain is deemed to be special, unique, essential to be studied. A neurologist researching hemiplegic migraine will call me or text me or send me a letter or a fax asking me to come into the city. They’ll order free tests, roll me into MRI and CT machines for hours, catalogue my DNA. I’ll be sent home with monitors and medical devices, be tasked with recording every last bit of my life so the researchers can see. My body will propel scientific inquiry, will earn an adequate, true, final diagnosis.
In the doctor’s office, I tell the fifth neurologist that my hemiplegia can exist for upwards of a month. I tell her about the knee brace I’ve taken to using for added stability, support. I am told that the aura is too present, that it shouldn’t become intractable.
She has possible hemiplegic migraines but the duration of her symptoms of mild weakness for a month at a time with aura are unusual.
I hear that I am too good at being in pain.
