I’ve always considered myself a healthy person. Sure, as a child, I had the occasional earache, the same bouts of colds that pass through every winter, and a long term battle against dermatitis. But aside from these ailments, I’ve been quite fortunate health-wise. That was true until two years ago when, at 22 years old, I had my first seizure.

I was living in Madrid with my flatmate, having been there for three months, the first time living away from home. One evening in November, I was sitting on my bed in my small box room, the overhead fluorescent light was on, creating a grim hospital aesthetic usually counteracted with natural light.

It’s hard to describe what happened next. It was a one second to another shift. The sensation was simply entirely unfamiliar. It wasn’t pain, it wasn’t discomfort…It’s like that moment before you fall asleep, that stage where the outside world slowly fades, and sleep invites you in. Or the sense that some invisible current was moving through my body, slowly switching off. The final person in the building turning off all the lights late at night. Except the building is my brain, and I’m irrevocably stuck in the building. I could still see, I could still move, but I was in a strange form of autopilot. Nevertheless, my body knew something was wrong with my brain.

I went to my flatmate, an English girl who I’d only been living with for three months prior. She was in the bathroom, getting ready for bed, when I called out her name. She came out, confused but humoring my strange behavior. I was panicked and frazzled. “I don’t feel well,” I was thinking, but the words weren’t coming out of my mouth right.

It was like I was drunk; the words were slurred, I started speaking in different languages. Irish, which I hadn’t spoken in years since school, and some Spanish, but none of the words I wanted to say. In my mind, I wasn’t comprehending the breadth of what was happening, but I still knew well enough that I was scared.

My roommate later confessed she thought I was joking at first. Naturally, speaking on strange incomprehensible tongues will confuse anyone. But she knew to bring me to her room and sit me down on her bed. I still tried to speak to her but the words still weren’t coming out right. My brain wasn’t communicating with my mouth properly. I wonder what my eyes looked like, whether they conveyed the fear, confusion, and frustration I was feeling. What was going on? What was happening to me? How could she help me when she didn’t understand what was going on? When I didn’t understand what was going on?

I’m not sure how long she had me there talking nonsense on her bed. But I suddenly remember one singular moment, the ceiling, the light from her harsh overhead lamp bearing down at me, (I later learned that I looked towards the ceiling because my eyes rolled to the back of my head) and my vision slowly shutting down from the peripheries. If I had felt like I was in that liminal space between waking and sleeping before, then this was me being pulled into sleep, into unconsciousness, into blackness.

All I could think of was, of course, death. This was death. This was how I’d die. Don’t roll your eyes, even if does sound dramatic. But in that moment, I had no explanation for what was happening to me. My body was shutting down and I was somehow conscious enough to feel it happen. I remember staring at that horrible light and feeling a strange sense of surrender take over me. A lilting to the unknown. I could do nothing to stop it, and the darkness took over.

It felt like sleep, but I hadn’t done anything of the sort. Unfortunately, my flatmate, who had known me for just shy of three months, witnessed the scene of me going into a tonic-clonic seizure. If you don’t know what that is, it’s the stereotypical one that makes you understand why they used to think epilepsy was demons posessing the body. The whites of your eyes show as you look towards the skies, and your body is simultaneously tensing and relaxing, arms sprawling sideways or clenched tight at your side.

I fell slightly off the bed she had wisely sat me on and began to convulse on the floor. She called the paramedics, trying to think of the word for ‘seizure’ in Spanish. (“convulsión,” as I later learned). Usually, when people have a seizure, the convulsing stage lasts a short time before they go into a sort of short sleep for a few minutes. ‘I woke up’ to my flatmate telling me the paramedics were on their way. I looked at her, confused; in my head, little time had passed, and now I could actually speak, so I was better, right? She gave me a somber look and told me I’d had a seizure.

I was in what’s usually called a postictal state, the stage after a seizure, when you’re not in the right frame of mind. Time felt distorted, strange, and I was unbearably tired. Feeling awkward about being taken care of, especially by my flatmate, I now felt embarrassed about enlisting her help. I started to dismiss her assistance and downplay the situation with an “I’m alright, really!” attitude.

When the paramedics arrived, apparently in my post-seizure hospitality and internal denial at my own mental state, I sat up and said to them, while in my own apartment, “A mi casa” (To my house) and guided them to my own room. The two assessing men shuffled into my small box room and gave me half a tablet of diazepam while they ran some routine procedures.

Soon I was taken in an ambulance for the first time in my life to the hospital, where I stayed overnight and saw a neurologist at the crack of dawn. They did some ECGs and CT scans to rule out possible tumors in the brain or unusual activity. I was asked a multitude of questions about family history with seizures, experience with recreational drugs, and history with meningitis. All of which were generally ruled out as the cause.

I was told it’s quite common for people to have one seizure in their life and never have another. Sometimes it can happen when you’ve been binge drinking, have a high fever, haven’t gotten enough sleep, simply when you’ve sort of neglected your body It is usually after two or more seizures with no known cause, that people start bringing up epilepsy.

So I went home to my apartment the next morning, shaken by the news and yet excited to recount this strange story. My dad booked a flight to Madrid to see me—maybe to make sure I hadn’t, in fact, taken up recreational drugs, or more likely, to make sure I was okay and wasn’t alone. My mum suggested I come home from Madrid to safety, family, and familiarity, but I decided against it. I was enjoying living out there in Madrid, and I’d have to throw away a 1000 euro deposit for the program I was doing if I quit, and despite it all, I didn’t see a reason to leave. It might not ever happen again, right?

After the initial storm of confusion and logistics had passed, I began to puzzle over what might have caused it. Even entering the café I had been in on the afternoon of my seizure, I found myself assessing every probable series of events. I was suddenly supersitious as I retraced my steps, as if having a coffee at 2pm in that same cafe or taking a certain route home may invoke another seizure.

I began to focus more on my health and well-being. I managed to treat the skin condition that had caused me to lose sleep, and then I started to take running more seriously than I had before. The running helped with the stress, and a part of me convinced myself that if I was in shape and happy, then the risk of seizures would at least be mitigated.

I went home for Christmas, excited for some rest and relaxation. The switch in routine threw me off-kilter. I was eating junk food, staying up late, and sleeping in. Typical Christmas Activities, of course, but one’s that would bite me in the ass.

To mark the end of 2022 with a twist, I had my second seizure. This time, however, I didn’t have the conscious mental stupor that happened before. All I remember is getting up from the sofa around 1 a.m on New Years Evene., and then waking up on the cold deck outside. I reckon I’d been on my way to my father, who’d been inside the log cabin (a separate building from our house) and had seen me standing outside before falling to my side and seizing. To this day, my father claims it was one of the scariest moments of his life to see me like that.

My family was gathered around me, my dog’s wet nose sniffing curiously at my face, its tail wagging at the curious spectacle. The paramedics through the phone speaker had told them to keep me lying down, but all I could think of was how cold it was outside in January on the wet decking. So they sat me inside on the sofa, while the paramedics came once more, this time conversing to me in the typical Irish manner. Once again, I was whisked off to the hospital.

As you can imagine, the A&E was overflowing with people on New Year’s Eve. Ireland already has a problem with overcrowded emergency rooms and a shortage of beds. Unlike in Madrid, I was stuck in that room for 36 hours, sitting in nothing but a chair, though thankfully near a power outlet. I remember Pelé had died while I was there; I watched it on the TV, dozing off occasionally with my head propped on my hand that was resting on the armchair.

I finally saw a neurologist on Monday morning. He informed me that I most likely had epilepsy and prescribed Keppra—500 mg, the lowest dose, to be taken twice a day. He warned me about potential mood changes and urged me to notify my doctor immediately if they occurred. These drugs were going to affect my brain, possibly altering my mood. They couldn’t give me an exact reason why I had epilepsy. Scientists still don’t fully understand the cause; it could be anything—genetics, a benign brain formation, or a previous head injury. What they could do, however, was attempt to identify triggers. Sleep deprivation seemed a likely culprit, the one possible link in my two seizures.

You’d think that once you’re prescribed your medication, you’d be content and treated. For me, luckily, Keppra worked and still does. But for others, seizures can be unrelenting, requiring higher doses or cocktails of various anti-seizure medications. I haven’t had a seizure since starting Keppra, though I still experience brain fog and occasional headaches. The one thing that doesn’t go away and that I underestimated is the anxiety.

Before my seizures, I thought my relationship with anxiety was like anyone else’s. But now, I feel hyper-aware of my body and its many strange tendencies. I’m paranoid about sleep and not getting enough of it. When I’m tired, I’m not just worried about falling asleep and missing my bus stop—I’m worried about my vision clouding again and waking up surrounded by strangers. I don’t trust my body the way I used to.

At times, it was crippling, and there were moments where I lamented this strange hand of cards I’d been dealt. Why me? I found myself feeling rushes of self pity, using it as an excuse to lash out, to cancel plans, to pass up on oppurtunities because I was scared of this strange new phenomenon I didn’t feel I had control over. Sometimes, I’ve had to lie down in the nurse’s bed at the school where I work because I felt unwell or dizzy, while curious seven-year-olds peeked in to see why a “teacher” was in the room. Worst of all, I started seeing myself as weak, unable to handle things like I had done before.

As a young person, we can be quite flippant about our health, but that wasn’t possible anymore. Alcohol and sleepless nights are a recipe for disaster for people with epilepsy, so my nights are always cut a little shorter as I head to bed. Swimming must always done with caution, with a watchful eye and in the shallow parts of water. Even a relaxing baths is potential for disaster. For a majority of people, a huge change is the inability to drive until you’re 1 year seizure free. While I didn’t drive before my diagnosis, I had a learners permit and was planning on getting back to learning when I returned home. As you can imagine, despite my seizures being controlled with medication, the thought of being in front of a steering wheel is daunting.

I found myself face to face with a new version of my life, navigating obstacles I hadn’t anticipated. Epilepsy brings with it a profound vulnerability—when your brain shuts off, you’re entirely at the mercy of strangers or family. I had to swallow my pride and admit to others that if I collapsed and started moving erratically on the floor, they shouldn’t be too alarmed. At a recent job, overcome with anxiety and taking a breather outside, I had to swallow a strange shame and let my boss know about how I was feeling. That shame came from a place that was embarassed about seeming weak, unreliable or somehow unable to deal with everday life.

But through this, I’ve learned to trust people more and to appreciate their capacity for kindness. People are surprisingly kind when they see you’re unwell. After I had to rest in the sick bay at work, one of my colleagues took a taxi home with me to ensure I got home safely. My younger sister will sit with me when I’m feeling lethargic, offering an arm in case I need something tangible to hold onto. People are inherently good, understanding and more understanding than we might think.

Since my seizures, I’ve become more mindful of my health and how precarious it is. I’m learning to manage it with meditation and by limiting possible triggers like caffeine, stress, and sleep deprivation. Along with a support system, I’ve made more conscious decisions about my health. I prioritise those early nights, try to drink minimally, and always remember to sit down and take a breather when I’m feeling light headed or dizzy.

But this doesn’t mean that I can’t live my life. In April 2023, I ran a half marathon in Madrid, putting months of training to the test. It felt special because I was reclaiming something—overcoming more than just tiring legs and heaving lungs, but finding peace amidst the newfound chaos of my life. As I ran those tarmac streets of one of Europe’s most famous cities, I had my earphones in, drowning out the jubilant cries of onlookers. It was just me and my aching calves, mind and body screaming at each other.

One of the songs from my playlist that came on was “Neon” by Julia Jacklin—a perfect running beat. My heart swelled as the lines repeated to a smash of drums:

“Am I gonna lose myself again?
I quite like the person that I am
Am I gonna lose myself again?”

As I pushed myself to the finish line, it was pure joy and dopamine-fueled elation. It was me, this new me, and despite my diagnosis, my life hadn’t stopped. It had made me more resilient. I was suddenly grateful for my legs, for my lungs, for my friends who had cheered me on. Despite my brain’s eccentric tendencies, I was grateful for the realization that this experience had spurred me to feel life’s fullness despite new limitations. I was still me.

Life is strange and unexpected, and I know I’ve been lucky in many ways. I live in a country where I can get my anti-seizure medication for free, where an ambulance will take me to a hospital to be treated by top-class neurologists. I have great friends and a loving family who look out for me and now possess a 6th sense to when I’m feeling poor.

I’m learning to be vulnerable, to ask for help, to know when to listen to my body and when to quiet my anxiety. I am not invincible—not in the way I used to think—but that’s okay. I am not the same person I was before my seizure. But perhaps, I am now realizing, that’s not necessarily for the worst. In my most vulnerable moments, at my weakest, I’ve found a strength in myself, and the strength one can find in others.