Lost for Words

By Caia Hope

I remember my first seizure in bed. I have the distinct memory of seeing my room in black and white, unable to breathe or move, and hearing the radio play in the kitchen downstairs while my mum sang along. I was able to sit myself up, seizure still in full swing, and attempted to stomp my feet on the floor, hoping she would hear my plea for help. Unfortunately my legs were too short, or rather the mattress too thick, so this time I had to let it pass on my own. After a few minutes I was able to hobble downstairs, opened up the door, mum looked over and immediately knew something had happened.

Prior to this there had been a few instances where I would suddenly find myself unable to speak or read, merely able to produce mumbled noises. We began calling these instances focals, rather unhelpfully as it turned out, as focal turned out to be a term used to describe certain seizures affecting different parts of the brain, and subsequently affecting different functions. For me it was speech and language formation, in a place called Broca’s area, located just above the left ear.

Two more tonic-clonic (shaking of the body) seizures on the one day, this time both with my parents by my side, about a month later prompted a visit to the GP and a quick referral to the hospital. Being 15 at the time, I fell into a weird position in the medical world by simultaneously being at the higher end of the children’s age range but also not quite an adult, so I ended up in a bed surrounded by a curtain covered in zoo animals and Finding Nemo playing on repeat on the TV hanging above the entrance door. I was brought back from dissociating, by the doctor pulling back the curtain. He confirmed my name and lended out his hand for me to shake it. I obliged and he replied “Congratulations… you have a brain,” prompting a good chuckle from my dad.

That day I was diagnosed with epilepsy.

Epilepsy is a strange condition as it affects people in very different ways. An extremely common misconception is that all people with epilepsy are light-sensitive, whereas in reality this only affects about 1 in 20 people with epilepsy, with epilepsy itself having a prevalence of around 1 in 100 people. That means in a randomly selected group of 2000 people around 20 will have epilepsy and only 1 will have light-sensitive epilepsy. This scientific research was quickly tested by my two brothers, after hearing of my diagnosis by immediately producing the flash on their phones and turning it on and off right in front of my face. I do not have light sensitive epilepsy.

I continued to have regular focals, and a tonic-clonic seizure around once every month and a half. I remember taking the train from Midleton with my friend to attend my first Pride event in Cork in 2018. On this short half hour trip I realised that I had not told her I had epilepsy, so I had to explain in this time what to do if I had a seizure, just put something soft under my head and let it pass. She asked how frequent my seizures were, then logically she asked when my last seizure was. I looked at her and noticed the panic in her face, as I had been very blasé about this sudden deluge of information she didn’t know about me before. I knew in my head that the true answer was about a month and a half previous, but I didn’t have the heart to further her panic so replied “oh.. I had one last week so it’ll probably be fine.” I can confirm I had a seizureless and fantastic first Pride experience that day.

I started on quite a high dose of medications to take twice daily for the foreseeable future. This diagnosis also caused my mum to start a deepdive search into everything there is to know about epilepsy, and admittedly I started a wikipedia hyperlink exploration on all the different parts of the brain. This supplied a great distraction instead of looking over material for the looming Junior Certificate. I also continued to have 6 monthly MRI scans, which have provided some of my favourite photos of myself. During Easter break, just before my exams, I was called back to the neurologist who informed me that they found a tumour. 

The brain works by firing rapid micro-electrical pulses. Much like wired headphones, my brain worked most of the time, but sometimes these pulses would fire through the tumour and my body would freak out (ie. have a seizure or focal). It was removed in an awake craniotomy that August.

I have not had an epileptic seizure since it was removed. Although this is a great revelation for my general health I sometimes feel that I have lost a sense of my identity. Although this identity is lost physically, when I saw the topic of the issue was ‘the brain’ I couldn’t help myself. I hope this article raises more awareness about epilepsy and how it can affect people differently.