Whilst I was packing up my room to move house this week, I found the diary I kept when I was going through all the tests around the time of my first seizure. I remember it felt pretty tough after the first seizure when it wasn’t certain if I was epileptic or not, so a lot of the journal is positive things I would force myself to write to try feel better about the uncertainty that came with not knowing why I had a seizure that day. I wrote nothing on diagnosis day. I wrote the following, three days after.
It was very affirming today when my friend told me he thinks that I am handling this whole thing quite well. He said that he was impressed with how maturely I talked about it, and said that some people with a lot less on their plate deal with things way worse.
It was very nice of him to say, but it would be even nicer if what he actually said was true. I’m sure if he saw me on the occasions where I bury my head into my pillows and scream to have my old life back, he might think differently.
But, it was nice of him all the same.
November 20, 2013 at 10:12pm
i often wonder - by s.bruce
I’ve often wondered if things happened differently on the day that I had my first Epileptic seizure, would I have had a seizure at all. After a difficult conversation with a friend on the phone the night before, my mind ran marathons all through the night and dragged my consciousness with it. I slept for an hour and a half and almost vomited when I woke up. But these weren’t exactly unusual circumstances: I’d been pushing the envelope with sleep deprivation for months. I had picked up a second job over the summer and a day that started in darkness at 5am and finished in the dusk of evening became regular. I’ll sleep when I’m dead, I joked with people when they asked when I would find some time to rest. Don’t get me wrong, I was tired – constantly – but I was also nineteen years old. I figured if there was a time in my life where I could manage maximum hours on minimum sleep, it was as a young adult who, realistically, would have been pissing away the hours in a day in a less productive way if not constantly at work.
I grew to somewhat look forward to the energy drink that I would silently sip on in the car park before my shift at the bakery started at 6am. It was the quietest moment of my day; no part of what would follow would be as calm as the world was at sunrise. I would watch the colours of the sky grow and evolve for as long as I could, knowing that the next time I saw the sky would be in the afternoon when the summer climate had obliterated the peacefulness of morning with a merciless heat. In the break between my two shifts, I would sit on the swings at a playground nearby and listen to my iPod. I was obsessed with the song La Femme D’Argent by French electronica duo AIR. As I bagged loafs of bread and stacked shelves with fresh rolls and fruit mince pies in the morning, I would fondly anticipate the moment in the day where I could put my headphones in and block out the white noise of life with that one song. Sometimes, after I finished my second shift as a kitchen hand in the afternoon, I would walk to the park around the corner from my house to swing some more. Even now, five years later, that song is still the perfect antidote to a day that has felt unpleasantly long.
The hours were draining at the best of times but with the looming commencement of my second year at university, I understood that it was a temporary situation which made it marginally more bearable to do. I had deferred my first six months of tertiary study to do nothing much except drink and party, only to return to study and become complacent with sub-standard academic results. This isn’t you, I’d told myself when I looked at my exam results and saw that I just scraped through Psychology with 50%. Next semester will be different and taking on the extra hours over the summer felt strangely like penance for the disappointing decisions I made when I completed college. Maybe I could even save some money for a holiday somewhere, or even a semester abroad if I could get my grade point average up. As monotonous as the hours and the work itself often felt, it was not without high hopes for what was around the corner. I was excited, I was planning, I was busy.
But the undercurrent of exhaustion assisted by the rickety impetus of instant coffee became stronger and stronger as I tried to find some semblance of balance between crazy work hours and a social life. On Tuesday’s, a group of us would go into the city for $4 pizzas. I’ve never been a confident driver, so my friend best friend would pick me up and he and I would go in together. We’d almost always end up holding hands underneath the table or stealing a sly goodnight kiss from each other at the end of the night, but I was determined not to complicate things with the drama of a boy. I couldn’t pull myself away from him though, nor him from me, and even though we had the ‘we’re just friends’ conversation more times than we could count, he was the person I wanted to be around the most on a good day, on a bad day, on any kind of day. I quickly realized that I could love him very, very easily. It made me nervous. It’s why I didn’t sleep the night before my first seizure.
‘I just think,’ I began, ‘that it’s not good timing and we work better as friends.’
I couldn’t stand the silence on the other end of the phone. If he had yelled back and told me I was indecisive and crazy and didn’t know a good thing when I saw it, I think I’d have felt less horrible about what I was doing. But even that early on, all he wanted was for me to be happy. And he would accept me not wanting to be his girlfriend, if that’s what it took. I don’t think I could have been that big, least of all as an angst-y, emotional nineteen year old. I would have screamed the universe down, but that’s just one of the many ways he and I were different at the time.
‘I just want to know one thing,’ he said. ‘Is it because of me? Is it something I’ve done?’
‘Oh god, no, not at all,’ I rushed emphatically. ‘It’s just timing. Everything you are is perfect. I think I could love you very easily.’ I squeezed my eyes shut and winced in the darkness of my bedroom, wondering if I’d gone a step too far and made things irrevocably worse than I already felt they were.
‘That’s the nicest thing anybody has ever said to me,’ he said quietly.
I meant it too and if you have the distinct pleasure of knowing the person I’m talking about, then you would understand that everything he truly is as wonderful as I have said. But the exhaustion from a summer of mad work weeks had carried into early April, tarnishing my school start. I was behind already and I was determined for the semester not to be a repeat of the last. It didn’t feel like the right time to become heavily involved with anybody but if there’s something I’ve learned from being Epileptic and having to give in to the feeling of impending seizure, it’s that you don’t get to pick when everything happens to you. I can tell my brain ‘no, not now!’ until I’m blue in the face but there’s no good pleading with a seizure. Same with your heart – you can reason all you like but at the end of the day, it wants what it wants and it’ll nag at you until it gets it.
As soon as we said goodnight and hung up the phone, is when the marathon of anxieties kicked into gear. Had I done the right thing? How would I catch up with school? Would I get enough sleep before work in the morning? In hindsight, it seems so silly to think I lost so much sleep by worrying about things that in no way posed as a severe threat to my livelihood. In a twisted way, what a blessing it is to say that I have lived a life where at one time, the issue I felt was more pressing was ‘does my best friend still want to be my best friend?’.
I had a ten hour shift starting at 7.45 the next morning, with an alarm to wake at 6.30. The faster time ticked away, the more I fretted about the imminent drone of my Basement Jaxx ringtone (sidenote: it is damn near impossible to sleep through ‘Where’s Your Head At’). How was I going to get through ten hours on next to no sleep, complimented by an unhealthy dose of lament about the phone call. The last time I looked at my phone for the time that night, it was just before 5am. I woke up ninety minutes later, swinging my legs out of bed and sitting up as straight as my unrested body would let me. I fought the urge to dry-heave before bringing myself to my feet.
I was used to feeling tired. Even the nausea happened from time to time, but usually disappeared once I started to move a bit and get ready for the day. The day of my first seizure though, was different. As I stood in front of the bathroom mirror brushing my hair, my arm jerked violently and the brush fell into the sink. I remember looking at my arm incredulously, wishing someone else had been there to verify what the hell had just happened. I stood still for a minute to see if it would happen again, inspecting my tired-looking face in the mirror for a moment. My skin was blotchy and red, the circles beneath my eyes dark and prominent. Definitely not your best version of yourself today, are we? I wondered cynically. I grabbed the hair brush out of the sink and finished tying my hair out of my face and into a messy bun, wishing I’d taken the time to straighten it. I had a twenty first birthday party to go to after work and I could already anticipate not having the patience for my wiry hair and a hot iron after ten hours on my feet. I checked the time on my phone: much longer getting ready and I’d be late. I darted back into my bedroom to quickly change into my work uniform, before grabbing my car keys from my dresser and leaving the house. It was April - April 4th, to be precise - and the early morning starts were much cooler than what I had become used to over the summer. I got into my car and cranked the heater for a minute or two, pondering the persistence of the nausea and the strange feeling that something wasn’t right, that things would become extravagantly worse before they would return to being right. When I couldn’t put my finger on what felt out of place, I reversed out of the drive way and began the twenty minute drive to work on the dead roads of Saturday morning.
November 15, 2013 at 10:24am
As my train pulled closer to Melbourne, the cityscape felt very sad and very beautiful all at the same time. Like when you love someone but you know it’s falling apart, and the memories of when it was good are magical but not enough to make you stay.
Plaça de Catalunya - Barcelona.
Maybe my third night in Barcelona - I got so fucked up at a pub crawl, I was on my way back to the hostel at about 3am when I bumped into some people I’d met earlier that night. I could barely walk straight but they convinced me to go with them on their night time adventure. So we walked around, bought 1 euro beers off the Pakistani men, and we eventually found ourselves lying on the circle in the middle of Placa de Catalunya. One of the guys screamed “BARCELONA” at the top of his lungs, and a second later, another loud “BARCELONA” scream was heard. I have no idea who from, but it was from someone who was nowhere to be seen. So we all laid there, screaming out “BARCELONA” and listening to randoms scream it back. We didn’t know who they were but we could all feel the same magic of the amazing city. That was my first week in Barcelona - little did I know that I’d be calling this place home for the next two months.
Even just looking at this pictures brings tears to my eyes.
reading this brought the biggest smile to my face. one of my best friends, who I met in Barcelona, once said to me - whether you are here for days or for years, Barcelona is the kind of city that changes a person.
I’m inclined to agree.
a necessary madness.
I had a fight with my sister once. I don’t remember what the fight was about but I do remember great threats on my sister’s part to kick me out of the bedroom that we shared. I laugh just thinking about this, as the sister in question is one of the gentlest, most selfless souls that has graced this earth - the kind of sister who brings me homemade soup and oreos when I call her up confused and crying about what to do with my life, the kind of sister whose parting words when I’m in such a state are always, undoubtedly ‘it’ll be okay’. I, on the other hand, am the kind of person who would rather jump the fence and break in through the back door instead of look for my lost house keys, only to find them hiding in the veggie draw in the fridge. With this information alone, it’s safe to say that if my sister wanted me out of the room, I’d probably done something completely mindless and/or frustrating to warrant it. But as I said, I can’t tell you what it was that prompted my sister’s threats to evict me. I only remember what I did to exert my claim to our bedroom in response:
I picked up a pen and started to write my name on the bedroom wall.
I hadn’t yet studied writing and literature at college, so I didn’t know about the power the written word has to communicate a message. I hadn’t yet fallen in love with my first favourite novel, so I didn’t know how the message behind words could stay with you long after you’ve read them. I was about four years old, so I hadn’t yet learned to write at all. But even without knowing how to write or how important writing would come to be for me, it was my instinctive response to the situation and nothing about that instinct has died in the twenty years that have passed since then. It’s memories like this one that make me feel like writing my novel next month is the furthest thing from crazy. When I consider that the instinct to write has existed in me long before I could even understand or recognize it, smashing out 50,000 words worth of novel in one month is really just the next logical step, right?
Admittedly, I laughed when I got to the end of that sentence because nobody has questioned the sanity of my desire to take part in National Novel Writing Month more than I have. Maybe logical isn’t the right word to describe what I’m about to start. It’s a necessary madness. There will be nights where I don’t sleep. Days where I don’t have time to cook and eat. I can see myself spontaneously bursting into tears at work/with friends/at the shops when I am convinced that the task I’ve set myself is a complete and total Everest. I will be shocked if I make through November dry-eyed. But the wonderful thing about the people I have in my life right now is when I’m hard up for some faith in myself, they share a little of their own with me. I messaged a friend the other day asking her if she thought I was doing the right thing by trying to write a novel. Her response was exactly what I needed to hear:
‘You absolutely need to be writing.’
Borrowed faith is a wonderful thing.
so, epilepsy. - a poem by s.bruce
in fact once,
i felt at all.
like the cusp
what i could imagine,
teasingly just out of my reach.
what a teenage thrill; impending everything
cusp was cliff! you?
the unexpected push,
insidious laughter in my
ear each time i crawled
against the carpet and you.
when symptoms come
i’m too afraid to walk
in case i fall and split
my head on some mundane
household shit and die alone
bleeding, fitting, choking
on my tongue
as you give yourself
a congratulatory pat
on your spineless,
for a back.