Tuesday, 27 December 2016

Temporal Lobe Epilepsy

I want you to imagine that you’re sitting at your desk. Maybe you imagine something in your mind’s eye. You might have a track of music you like on your mind.
Suddenly, the visions in your mind start to become more vivid. They start to take a life of their own, out of your conscious control. The music becomes louder, almost real, and takes its own direction and movement, nothing quite like you’ve heard before. The visions in your mind become progressively more fantastic, realistic, and detailed. For a moment you thought you saw one of the characters in your mind’s eye darting across the room in your peripheral vision, and you can now almost smell that you’re there. You hear the background noises of the scene in your mind. You feel someone tug your sleeve and urge you to pay attention to them. The music is becoming like a score to a movie playing in your head, and you’re the protagonist. People, objects, things, start shifting in size and perspective. Someone’s head looks massive and funny, the wall seems an infinite distance away, and that ant looks way larger than it should do.
You’ve likely experienced this many times before, ever since childhood, and you know that these are hallucinations. But they are compelling and they don’t leave you alone. The longer they stay with you, the more you want to engage with your hallucinations, to be the hero of your mind’s own movie, which of course isn’t socially acceptable behaviour if you don’t want to be instituted. As this goes on, perhaps after a few minutes, the hallucinations might start to come more and more out of your mind’s eye and senses and into your real perception of the world. Of course, you know they are still hallucinations, but they are compelling, and they are demanding your attention. You are in Wonderland, in space, on a faraway planet, on a spaceship, it doesn’t matter. You are seized by your imagination, you are in a fit of fantasy. You might talk to your characters, act out the weird things occurring, and people trying to bring you back to the real world can only do so for a few seconds before your mind becomes captivated – seized, again.
By the time this starts to end and you return to the real world, you can feel the most horrific migraine setting in. You may feel dazed, slightly out of touch with reality. You won’t usually be up for conversation for a while. Alternatively, you might come back to the world with brilliant and clear insights – whether relating to your own life, to work you need to do, or just more broadly about philosophical ideas or world events and politics.
This condition isn’t schizophrenia, but it is still, sadly, often misdiagnosed as such. It is temporal lobe epilepsy, and it is the condition the author Lewis Carroll almost certainly had, and which he gifted to his most famous character, Alice. It is also the condition I was diagnosed with in my late teens. Epilepsy, like autism, is not one disorder but a collection of them with often different underlying causes, a spectrum of severity, and often characteristic personality traits that form parts of the syndromes for specific types of epilepsy. Epileptics are very obviously non-neurotypical, but the term is still very rarely applied to epileptics as opposed to autistic people in mainstram discourse.
Some types of epileptiform neurological condition are still intensely difficult to discuss because they can present like psychosis or a psychedelic trip. The stigma attached to epilepsy is still very much real, and especially in the forms of epilepsy that present in superficially psychotic-like behaviour the stigma can be different to someone who suffers only tonic-clonic (grand-mal) seizures. The particular stigma attached to them arises simply because the discussion of hallucination is still taboo in our society.
Epilepsy, like autism, is seen by modern Western medical science as purely pathological, and something to be treated and cured. But as many autistic people report developing an appreciation for some features of their autism – the attention to detail, the cases of savantism and genius – some epileptics have come to see the medical model of attempting to suppress epilepsy through the use of medication and even surgery regardless of the cost to the individual and whether medical goals meet the goals of the patient, as being just as offensive and misguided.
While I absolutely agree that my epilepsy needs managing medically (there are situations where it is totally inappropriate to be seized in this way, and in my teens they did occasionally become secondary generalised seizures), I have absolutely no desire to cure myself entirely of this condition. I credit this condition, as many others who live with it, or have lived with it, for my brilliant imagination. I credit it with my gift (nay, even compulsion) for writing, and my lifelong love of philosophy and spirituality. And I also credit anti-convulsant medications for robbing me of these things for quite a few years of my life.

I share this condition with some brilliant minds – Lewis Carroll and Fyodor Dostoyevsky to name just two. And I want to ask you a question in ending this; I want you to suppose Lewis Carroll and Dostoyevsky lived in the modern era and used anti-convulsants for most of their lives. Would their works be anywhere near as remarkable or famous?