My first ever tonic-clonic seizure arrived at a beautiful destination wedding in Spain. Thankfully, it had the good sense not to crash the ceremony; it waited until in a taxi the morning after. That — and most other details — had to be relayed to me by other people later, through anecdotes and photographs and medical reports. There are pictures of me standing in a beautiful peacock garden that I simply cannot remember.
They were, apparently, taken the afternoon before the wedding. We had all gone sight-seeing. The blues and greens of their ornate tails look like they belong to an oil-painting, and the flower-beds are organized and intricate, boasting soft pink roses that I know would have delighted me. Despite the beauty of my surroundings, I’m looking at my own feet; You can’t see my eyes, really, just my lashes, and my hands are all knotted together. Looking at it, I can’t tell if I was trying for a demure pose to match the prettiness or the garden, or if I was anxious or distressed. It was probably a combination of both.
I’d been harboring suspicions that something was wrong with me for over a year, but the possibility of epilepsy had never crossed my mind. Unpacking the distress of this diagnosis may have been easier if I had any concrete memories surrounding the main event.
The few memories my subconscious has dredged up are brief, fragmented, and almost entirely negative: the clearest one is, in fact, a memory about forgetting — a jolt of panic upon leaving, a sudden realization that I’d left my phone behind in the hotel. We were in a hurry to get back to the airport; I was holding everyone up; people would be cross with me.
The few other moments I can recall are similarly punctuated by anxiety: Very loud music and too many conversations; a visceral reaction to the unexpected texture of a tomato-flavored something; spilling my tea at the breakfast table, which was attributed to clumsiness, but was probably a myoclonic jerk. My legs giving out in the hotel room, and — just before the seizure — crying in the taxi.
Why was I crying? Nothing had happened yet. Perhaps (probably) I was simply overwhelmed – my doctors have since identified stress as one of the biggest triggers of my epilepsy. Taking a trip to another country required a shift in routine at a time when I was already balancing many anxieties.
My health was actually one of those anxieties. I knew — although I struggled to convey this to anybody else — that there was something wrong with my brain.
Memory problems have followed me all my life, but they had worsened dramatically in the year leading up to my seizure. I’d previously struggled with packing my bag for school; the timetable was slightly different every second week, which always stumped me, and I had never been very organized. If we were asked to bring in a specific textbook or particular piece of equipment, it was likely to slip my mind. But now, I’d rack my brain and still have no recollection of ever being asked to bring it in at all. Further, a lot of the time I’d simply have no memory of actually packing the bag, although of course I had done it; this would leave me at a loss to explain where exactly things had gone wrong.
To outsiders, the difference was probably difficult to see. But I could feel that it was fundamentally different, that this wasn’t just absent-mindedness or a concentration issue but a hole, an actual gap; when I pictured my mind, I imagined putty, stretched too thin until it was torn.
After my diagnosis, however, my memory problems could no longer be attributed to carelessness. I received less advice about timetabling and post-it-notes, and people seemed happy to assist me in trying to remember. The diagnosis was significant enough that my symptoms could no longer be considered carelessness. I received other people’s memories — as stories, as Get Well Soon cards, as photos — and attempts at genuine understanding, which I had spent a long time feeling desperate for.
Looking through photos from my time in Spain hasn’t helped me remember my time there, but they have helped me make guesses that help fill some gaps. Many photos feature an enormous tree that looks like it belongs in a storybook, one that I’m sure I loved; a lot of the pictures of it are from my own phone, and I have always loved fairy tales. It was an outdoor wedding, so I bet I was cold; Spain was surely warmer than England, but I am always chilly and the dress was sleeveless. The bodice, too, is an awkward fit, but I only know that because I’ve worn it since.
The dress is lovely, blooming all over with satiny pink flowers — in the photos, I’ve paired it with an awkward white fascinator, a type of decorative headpiece, often worn at British weddings, trying my best to grow into the elegance I so desired at fourteen. When I imagined “adulthood,” I often thought of ease of movement, of being someone stylish and glamorous who never dropped things or forgot them. I wonder if my teenage self would be disappointed to see me now.
I recognize the clothes I’m wearing in the peacock garden photos too — those photos are my favorite, although I prefer the garden itself to my sartorial choices. The necklace was pretty and ornate — Alice in Wonderland themed — but I wouldn’t wear it now. In the photo I’m wearing stonewash jeans that I’ve since gifted, and my top is cold-shoulder because all women’s tops seemed to be back then. It’s actually quite sweet — pretty, pale yellow, floaty — but now it’s folded tightly somewhere at the back of my wardrobe, rarely worn.
Now, when I think of the wedding, the glossy sheen of those photographs comes to mind. I can recount the basics of the story; I know what other people have said happened. Is that the same as remembering the wedding? I know that it isn’t.
The effects of epilepsy on memory are well-documented. It’s frustrating to constantly forget important tasks or items, or struggle to recall words or forget where you’re going mid-sentence. (The latter issue is particularly handy as a writer). But the complete erasure that has accompanied my tonic-clonic seizures feels like a different beast altogether.
Arguably, my memories have been my biggest loss: the first medication the doctors tried effectively controlled my seizures. I don’t think I’d like clubs anyway; not drinking has never presented many issues for me; I doubt I would have been a fantastic driver. And I wanted to be a writer, not an athlete or a surgeon, so my condition couldn’t destroy my dream the way it would have swallowed up the dreams of so many others.
I did have more seizures after the wedding, but nowhere as momentous as the one in Spain. In fact, after that they all happened at home — in bed, on the sofa, not at an actual wedding. It’s not such a terrible thing to forget what you were thinking about lying in bed at night, or what work you were doing on your laptop, but forgetting a marital ceremony is something you can feel the loss of far more keenly.
I could go back to Spain, but it wouldn’t be the same; I could keep trying fruitlessly to remember. Or, I could accept the destruction of those memories — a fact, within the larger fact that my life has been irreparably impacted by my disability.
Moving forward has only been possible because I haven’t shied away from looking back, and looking back properly. Especially when the diagnosis was new, people shied away from the word epileptic, told me not to call myself that. Thankfully, my teenage self was stubborn enough to hold onto it.
That conviction has served me well; sometimes I still get shocked or upset reactions if I say that something — like alcohol, for example — is beyond my limitations, but what are you to do when it’s the truth? It is important to see things as they are; a photo album and an anecdote do not a memory make. But even if I can’t conjure up anything of the peacock garden, there’s no reason why I couldn’t make plans to return to it tomorrow.
My fractured memory wasn’t particularly helpful during a time where I was trying to grow into my identity, but I have since recovered my sense of self. Looking back on the period after my diagnosis — probably one of the most difficult in my life — has allowed me to appreciate my own strength. I managed my exams alongside my health against people’s expectations. I eventually returned to the things I used to love; I even discovered new ones. Accepting where I’m standing has enabled me to figure out where to go.
There have been plenty of photographs since then. Earlier, I considered whether my younger self would be unhappy with what I’ve become. Certainly, I think she’d be slightly dismayed to discover that my memory hasn’t much improved and that I still have a tendency to lose my way and drop things.
But I don’t think she’d be disappointed if she had a chance to view my more recent photo albums. I hadn’t even thought about university back then; I don’t know what I’d have said about my matriculation photos at Oxford, or my university bedroom.
Even if my brain is still deeply unreliable — I’m fond of referring to it as a sieve — I’m sure not to forget the kind of person I am, or my ambitions and goals. The peacock garden, as beautiful as it was, is not necessary for any of that; I can make peace with the loss of it.
Megan is an emerging freelance writer currently pursuing English Language and Literature at Oxford University. She likes writing about health, faith and fashion; she does not like Twitter, but is occasionally found @meginageorge. All her published work is available at https://meganspublished.tumblr.com.