A hospital in Melbourne, August 2015
I was 14 when I had my first seizure.
It was the first Saturday after my birthday, the logical date to hold my birthday sleepover. Two of my friends would come over and, in the grand tradition of teenage girls, we would eat junk food, watch Mean Girls, and probably gossip and giggle about our other friends and boys we liked and classmates we didn’t.
Instead, I spent the night in the paediatric ward.
I had three more seizures that year, and heaven knows how many tests (EEGs and MRIs and fMRIs and sleep-deprived EEGs and spinal MRIs and a truly ungodly amount of blood tests) with no answers. “This can just happen to young teenage girls,” doctors explained to my terrified parents. “Their hormones are fucking insane.” (I’m paraphrasing…probably). So I was put on medication, just in case, and sent on my way.
I was 16 when I read Lord of the Rings. I’ve been deep into fandom since I was a pre-teen, devouring fanfiction, fanart, meta, and, most importantly, fanmixes. Fan-made playlists, songs dedicated to a character or a ship. They remind me of a teen in a 1980s movie, finger on the record button, waiting for the radio to play that song, the one that reflects their exact feelings and dreams.
A Frodo/Sam fanmix on 8tracks (God, that might be the dorkiest thing I’ve ever written) is what led me to Gregory and the Hawk’s Boats & Birds. I fell in deep, devoted love with it. I even learned to play it on guitar, which was difficult because I can’t play guitar.
It was probably a few months later that I had my worst seizures yet.
I’d been weaning off my medication. That had been the agreement: meds, just in case, for two years, and if nothing happens, awesome! It was a one-time thing! You can stop taking the meds, stop worrying about losing your mind and your health and your life. You can be a normal kid again.
I woke up on a Saturday morning feeling like death. Not just regular death, either, old death. Ancient death, as if I’d been put in my tomb with Hatshepsut in 1458 BCE, rotting for 3000 years, and suddenly woken up in my little bedroom in Australia.
I barely made it out of bed. I don’t know how I ended up at my mum’s house (my parents divorced when I was 11), but I know I talked to her a few hours later.
I’d had a seizure in my sleep, we’d deduced. She wouldn’t let me out of her sight for hours, hours I spent sleeping on the living room couch. When I woke up, she finally relented and let me retreat back to the small, calm darkness of my bedroom.
The next thing I knew I was on the ground. A paramedic was talking to me. I didn’t know what they were saying.
I remember being at the hospital, lying on a gurney. I remarked to my mother that I was surprised at how quickly I was getting a bed. She told me, as gently as she could, that I’d had another seizure at the hospital. I’d just come out of the resuscitation area.
There are a lot of things no one tells you about epilepsy. The biggest one, I think, is the panic. The panic that you feel after a seizure, confused and in pain and with no idea of what just happened. The panic you see in your friends’ and family’s eyes when they witness it. The underlying panic that stays with you always, constantly wondering when it will happen again.
It was late, I think, by the time I got a room. I was tired. I wanted to go to sleep. But the panic was still there, preventing any hope of that.
My mum had brought my phone from home, knowing that I always fall asleep to music, not knowing that most music hurts my ears and my head for days after a seizure. But it was almost instinct. I took the phone, put on my headphones, pressed play.
The panic started to subside, and I fell asleep listening to it.
There is something calming about steady guitar picking, the soft build up to the chorus, and Meredith Godreau’s soft, sweet voice. I can’t find the words to describe why, just like I can’t find the words to describe a seizure. All I can describe is the calm feeling that song gave me.
It’s been four years since that day. I don’t listen to Boats & Birds as often anymore. It still takes me back there, reminds me of something I would rather forget. But when I do hear it, I feel that same calm. That same sense of peace.
And I still think about Sam and Frodo.