Love, Life Stories

When I was living with a seizure disorder abroad, I had to learn how to find the beauty in everything

I moved to Spain hoping for a beautiful, cinematic experience. Instead, I learned what it's like to live abroad with a chronic medical condition.

It was my second year in Spain, the year I was hunting for poetry in everything.

In August of 2014, I had a grand mal seizure on the floor of my parents’ living room while I was home visiting. My neurologist diagnosed me with temporal lobe epilepsy, and two weeks later I was back in Madrid where I had a job teaching English.

My first year abroad had been idyllic, but now I was returning on an anti-seizure medication with a laundry-list of possible side effects. They included irritability, drowsiness, depression, mood swings, poor coordination, muscle tremors, and short-term memory loss. I experienced all of them.

[bctt tweet=”It was my second year in Spain, the year I was hunting for poetry in everything.” username=”wearethetempest”]

Before moving to Madrid, I imagined myself as the protagonist of a coming-of-age film who “finds herself” in Europe. I hoped I’d have tumultuous love affairs. I hoped my life would resemble the movie Before Sunrise, or maybe a Henry James novel.

Instead, I found myself struggling to navigate a foreign medical system. 

I needed a Spanish neurologist to prescribe me medication with fewer side effects, but first I needed a referral for a specialist, an overnight EEG, and approval from my private insurance company for the procedure. This process took eight months.

In the meantime, my muscle tremor was so bad that I once dropped a full glass of orange juice in the break room of the school where I worked. The glass shattered on a table in front of all my coworkers. I stared at the shards, paralyzed with embarrassment. Before I could explain, my brain went from calm to hysterical. I ran to the bathroom to cry in private. I was aware that my emotional response was disproportionate to the event, but still unable to console myself.

It didn’t matter how much I exercised or meditated. I had three moods: irrationally angry, despondent, and giddily talkative. In a perverse way, I liked being able to pinpoint the cause of my problems. I’d always half wished for diagnosis more specific than “depression.” Now I had a tangible neurological condition, but the solution was completely out of my control.

At 23, I had never thought much about my health before. Now I had to be vigilant about taking care of myself. I had to get enough sleep every night. My doctor sternly instructed me not to have more than one glass of alcohol at a time, perhaps unaware of Madrid’s culture of staying out til 7:00 am every weekend. I tried to go out, but I never knew what to say when people asked me why I wasn’t drinking. I could either be purposefully cryptic, which led to more probing questions, or I could overshare my entire medical history. Now that someone told me I couldn’t do it, all I wanted was to get sloppy drunk and make reckless decisions.

[bctt tweet=”In a perverse way, I liked being able to pinpoint the cause of my problems” username=”wearethetempest”]

To cope, I told myself that I was having an “experience.” Each morning I took two metros and a bus to get to the tiny village where I worked. On my commute, I would see a piece of graffiti on a brick wall stating in black spray paint simply “HOW TO LOVE.” I heard the Ecuadorian buskers’ flutes in the metro warp into eerie coos the farther I walked down the platform in the afternoons. I watched the sun rise and set over fields of yellow flowers and herds of sheep. I thought over and over again about “HOW TO LOVE” and who had written it but could never find the words to explain why it felt so beautiful to me.

There is a rare side effect of temporal lobe epilepsy known as hypergraphia, or the intense desire to writeIn the months following my seizure, these phenomena kept reappearing in my life. I read about it first in my obsessive googling of everything related to temporal lobe epilepsy. Then I started seeing articles on my favorite publications about curious cases of people who never wrote poetry until after they had a seizure, who suddenly started keeping meticulous journals, or people who couldn’t stop writing the same word or phrase over and over again on sheets of paper. 

I filled up shelves worth of journals in Spain. I began and abandoned poems. I thought of lines everywhere, wrote them down, repeated them over and over again to myself. I don’t know if this was hypergraphia. I’ve been a compulsive journaler since 1998, but I liked the idea that a surfeit of electrical activity in my brain could endow me with a superpower.

With every irrational mood swing, I decided “this will be poetic one day.” I had no evidence that my compulsive journaling was anything other than circumstantially related to my condition, but I survived by telling myself there was a reason for all of it. 

[bctt tweet= “With every irrational mood swing, I decided ‘this will be poetic one day.'” username=”wearethetempest”]

In February, the insurance company finally approved me for the overnight EEG.

On Valentine’s Day, a nurse glued multi-colored electrodes to my head while No Doubt’s “Don’t Speak” played on the radio. I wondered about the effect of a song I’d been obsessed with in middle school on my brainwaves. The nurse’s soft voice sounded through a microphone in another room. She instructed me to hyperventilate, close my eyes while bright lights flashed, read aloud, and do math problems. I was in a sci-fi movie and it was all taking place in my second language. I journaled in my hospital bed, wondering again whether my thoughts had an effect on the test.

[bctt tweet=”I was in a sci-fi movie and it was all taking place in my second language. ” username=”wearethetempest”]

It’s been almost three years since I’ve had a seizure. In the first year following my seizure I spent a lot of time staring out bus windows and thinking about ‘HOW TO LOVE.’ The second year, I made a lot reckless decisions as if to compensate for having taken such good care of myself before.

This past year has been spent readjusting to my own culture and finding out how to make my life interesting without the built-in poeticism of a city like Madrid. The inability to control my emotions disappeared as soon as I switched medications, but my desire to make things from my pain has remained.

Now, I think I finally figured out what ‘HOW TO LOVE’ means.

It means I figured out how to love my circumstances, even as I felt helpless, by finding beauty in someone’s ugly graffiti scrawled across a brick wall in the middle of nowhere.