‘She’: Epilepsy, Mental Health, and Self-Detachment

TW: This article includes discussion of mental health, seizures, medical ableism and discussion of to eating disorders.

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I recently sat down to write a poem for a competition entry. It was only when I re-read my work I realised in several stanzas, I referred to myself as ‘she.’ To my surprise, I changed them all to ‘I’ – but then, the poem didn’t feel right. So, I changed them back.

I’ve previously convinced myself that I’m nothing more than a consciousness. It’s usually when I’m in bed and have a chance to think. The more I think, the more life starts to unravel at the edges. The idea that individual souls are connected to individual bodies feels ridiculous, absurd.

The sensation mounts, and then something snaps. Sometimes, it feels like my actual bodily form is changing, until I half-believe that someone completely physically different is lying in my bed. 

Or, I might not feel like I’m grounded to anything physical at all – just thoughts, deluding themselves into belief in the human race and a tangible world. It’s not an anxious feeling although it’s not the best, either. It’s just there until it passes, and then I go to sleep. 

Until the poem/pronouns incident, I assumed this was a pretty ordinary experience. (People talk about existential crises all the time, right?) However, upon investigation, it turns out I might have a problem. 

It isn’t the first time I’ve come to this conclusion because of a poem. I’m not very good at communicating with myself. Since I was young I’ve dreamed about fictional worlds that, to be honest, are more elaborate than anything I’ve written down.

They contain fictional countries with unique political systems and cultures, complex, three-dimensional characters with in-depth backstories, invented fantasy creatures, and elaborate forms of witchcraft and magic.

I consciously retreat to this universe when I’m upset, but I spend hours there every day regardless. It’s where my “big” emotional issues are dealt with and processed. It’s a deconstructed version of myself, with different aspects of my life, personality and problems organised and rearranged through different characters, situations, and even fictional government policy.

Once I thought about it, it made sense this might have an effect on my ability to conceive of myself as a grounded and singular being. But, if that is the case, I’m not sure what to do. And as I realised when I was fifteen, I need all the coping mechanisms I can get. 

I knew before the seizure that my mind wasn’t completely in control of my body. Unfortunately, fourteen-year old girls don’t have much control over anything, and no-one thought to get me properly tested until my first full tonic clonic seizure (the kind you’re probably picturing, where I drop to the ground and spasm).

The months prior were spent in constant, mundane terror. I knew my limbs were jerking without my consent, but I was helpless to stop it. Excluding a couple of friends, nobody thought anything was wrong. 

As I grew older, my “clumsiness” became less endearing – I dreaded social settings, terrified I would be embarrassed or told off for dropping or knocking something. I had a lot of absence seizures, which are unnoticeable and involve “spacing out”.

These made it difficult to organise myself, and consistent muscle spasms meant I was in a fair bit of pain. The first tears in my hospital bed weren’t because of my aching muscles or the drip in my arm; I was relieved to see an actual doctor, one who believed something was wrong and was going to help.

I was lucky – the first medication prescribed pretty much worked. The full seizures stopped in months, but the spasms remained, reminding me that I wasn’t really in control. It wasn’t just that I couldn’t trust my body; it was that I knew people around didn’t trust me, either. I (perhaps naively) thought an official diagnosis would be enough to be believed, but the extent to which people will deny the existence of disability– especially invisible ones– surprises you. I hate it. I want to be angry, but that isn’t the primary emotion.

It knocks my own perception of reality. I start to doubt myself, both mentally and physically. It skews my sense of time, too. I feel younger, because I still associate my mid-teens with that sensation of being terrified and disbelieved. Things become ungrounded again, and my sense of holistic self slips away. 

I wish I could wrap up this article with a solution, but the truth is I’m still working on it.

During the pandemic, I developed some issues surrounding food. I contacted a counsellor once I realised that my eating was becoming disordered. This led to some unpacking of my overall body image.

This brought home the realisation that my relationship with my body is so much more than social pressures surrounding weight, or Eurocentric beauty standards I can’t fit into. I’m grappling with detachment, not just dislike. And that’s not an easy fix.

But it’s not hopeless, either. In one lockdown, I started failing to recognise my reflection in the mirror. But now I know that it’s me. I’m eating better. My daydreams are becoming more representative of my physical reality.

I know better than to claim things will be entirely upwards from here, but I’m moving towards improvement. And when it comes to mental health? That will always be the most important thing.