Candice Bundy

Epilepsy – Misconceptions on Fire

I don’t usually do this. I generally don’t feel the need to carry on about my epilepsy.

Today is different. If you’d rather pass on this one, feel free to do so now, cause I’m going there. This is why I’m writing a book about my Temporal Lobe Epilepsy. Well, not the only reason, but you’ll get the drift.

Back when I was first diagnosed I shared my news with friends and family I predictably got tons of support. I took medication after medication until I found the magical mixture which controlled my symptoms. Nearly a year later I felt I’d finally gotten a hold of the beast.

Of course there’s always someone who treats you differently after a ‘big diagnosis’. This time it was a family member. They’ve been odd about it from the get-go and have been consistently treating me like I’m still sick, ill, and convinced that my treatment is very ‘day-to-day’ unstable.

I finally asked my husband, what the hell, cause this is on his side of the lines, and he clues me in: this person interpreted my epilepsy diagnosis as insanity.

Yeah, you read that right. Epilepsy = Insanity. I, predictably, drank another glass of wine, and then elucidated to those present how “crazy” that theory was. But then I slowly understood.

You see, I was diagnosed with temporal lobe epilepsy, expressed by both focal and absence seizures. This is a fairly uncommon form of epilepsy. It’s not tonic-clonics, mind you, so I don’t lose muscular control and get my groove on. None of that, no, that would have made diagnosing me about one thousand times easier because it’s what doctors are more used to seeing. Even my absence seizures weren’t very pronounced, after I started to fall flat on my face and almost crashed my car. I mean, I ‘spaced out’ on people, and they no doubt took it personally. (So yeah, if I’ve ever just been looking off into the distance on you for a moment and you couldn’t get my attention, and then I was back and had lost the train of thought in the conversation, I’d just seized on you. Surprise!) Not as obvious as falling on my face while walking, but we’re not always walking around, right?

Anyway, my absence seizures only accounted for a small percentage of my total seizures, the majority were focal seizures. My presumed ‘insanity’ is related to my focal (aka Simple Partial) seizures. Here’s a helpful definition from wikipedia.org to help clarify the heart of the matter:

Simple Partial Seizures (SPS) involve small areas of the temporal lobe such as the amygdala or the hippocampus. The term “simple” means that consciousness is not altered. In temporal lobe epilepsy SPS usually only cause sensations. These sensations may be mnestic such as déjà vu (a feeling of familiarity), jamais vu (a feeling of unfamiliarity), a specific single or set of memories, or amnesia. The sensations may be auditory such as a sound or tune, gustatory such as a taste, or olfactory such as a smell that is not physically present. Sensations can also be visual, involve feelings on the skin or in the internal organs. The latter feelings may seem to move over the body. Psychic sensations can occur such as an out-of-body feeling. Dysphoric or euphoric feelings, fear, anger, and other sensations can also occur during SPS. Often, it is hard for persons with SPS of TLE to describe the feeling. SPS are often called “auras” by lay persons who mistake them for a warning sign of a subsequent seizure. In fact, they are indeed seizures. Persons experiencing only SPS may not recognize what they are or seek medical advice about them.

Also, note the last line of the above description. It’s why I didn’t get diagnosed for so long. It’s not that I was a dope or anything, I just didn’t realize having déjà vu six times a day was unusual. Right?

Now you get it, don’t you? Do you? Everything in that list is something I’ve experienced, and my family knows this. Now you know it. No seriously, reread that shit. Everything there is intimately familiar to me. I can tell you jamais vu is the worst. Imagine looking at your family or friends and having no emotional connection to them. Oh yeah, be happy those seizures only last for thirty seconds to two minutes on average. At least they pass quickly, and then the fantastical quasi-reality passes and I’m left feeling hung over with a headache and happy it’s over. Whew.

Let’s be very clear, I know when I’m back to what’s real. What’s ‘normal’. Traditionally your actual crazy people don’t know have this distinction. Before I was diagnosed I rightly feared my ‘episodes’, not knowing what caused them, when they’d come next, or what they’d look like. Sometimes they’d be fun and wondrous, and secretly I lived for those. Mine was a spectacular, if terrifying world before medication.

Am I insane simply because my brain functions differently than yours? We’re all quirky and different and I don’t call you crazy when you can’t match your socks to your shirt. Yeah, occasionally my reality slips. So what? I’m sure you’ve got imperfections too. I’m not holding those against you, am I?

And yet, to this one person, I will forever be insane because of my diagnosis. There’s no reasoning there. No changing of minds. I over-shared on my symptoms into the realm of things ‘crazy’, and now I can’t go back. What’s done is done, and I am now looney tunes. On the upside, I suppose it does afford me some laxity of behavior at future events. I mean, hey, I’m a wack-job, after all, right? What freedom…

I’m not afraid of the stigma of epilepsy. No one with this condition should be afraid either.

If you’ve hung in this far, thanks for reading. Anyway, yes, I’m outlining a book on my experiences with Temporal Lobe Epilepsy. I hope to dispel the idea that people living with this disorder are in any way crackpots and generally give insight into the condition. And not from some doctor’s point of view, who’s simply known many patients, but from the mind of the patient. Perhaps it’ll be useful, or perhaps it’ll only serve to confirm my stance as an insane person. Whatever. It needs doing.

I’m a writer, after all. It’s what I do.

Oh, and as a footnote, there’s a number of artists and writer’s who’ve been diagnosed or suspected to have had with Temporal Lobe Epilepsy. There’s something about it that fuels the imagination and forces people into creative outlets. So please don’t feel a damn bit sorry for me and my brain that runs on a different wavelength than yours. It’s helped make me the awesome, creative, and unique person I am today.

Tags: epilepsy, insanity, misconceptions, rant, temporal lobe epilepsy