On Communicating Auras and Daytime Seizures

I have an overwhelming backlog of things-it’s-probably-important-to-blog-about, so, naturally, I’ve been avoiding writing about anything at all. But since I currently have enough energy to blog and not enough to work on real-life stuff I have to get done (i.e., I’m procrastinating), I guess I’ll just choose something and get crackin’.

First, some background. These past few weeks have been more seizure-y than has become my new normal, and in a novel way: while my seizures are typically in the evening and a mix of the convulsive and partial variety, lately they’ve been mostly in the afternoon (bad) and partial-complex (good, at least comparatively speaking). This shift to daytime “action” has been difficult, in part because I’m almost never home before 6 PM or so. This means that in the past ten days alone, I’ve had at least seven seizures while out and about, doing my thing. These have included:

  • A few on the subway;
  • One on the streetcar;
  • One while browsing the avocados in my local Loblaws;
  • One in a professional setting;
  • Two, in close succession, while with a friend in a café.

The Transit Seizures were relatively straightforward—aura, desperate search for semi-private corner in which to die of shame, memory gap, return to reality—and thus don’t warrant further detail. So far as the Loblaws Incident is concerned, suffice it to say that you can relax: no avocados were harmed as a result of my neurological dysfunction.

I’m going to start with the last on the list and save the penultimate for its own post.

Something I have to work on, I’m realizing more and more, is vocalizing in a clear and articulate manner (to people who aren’t my husband, who always has the distinct pleasure of hearing that danger’s on the horizon) when I have an aura. I recognize how lucky I am to have auras at all; that little gap, that little warning, has often been the difference between falling and not-falling, has allowed me to position myself in a safe location while I wait for the inevitable on countless occasions. And yet, when I’m with others and get that familiar feeling, instead of doing the logical thing—telling them that I sense an approaching seizure, thus allowing them to help me and simplifying matters for everyone—I frequently do what seems logical at the time: rush off to the bathroom in the hope that I can either a) have the seizure and recover in a speedier manner than I ever have before, emerging and rejoining the conversation as if nothing has happened; or b) somehow avoid the seizure by ignoring the aura because that’s a totally legit strategy, right?!? #epilepsydelusions

The result is inevitably that I wander out of the washroom, confused about where and who I am. Since I was too embarrassed to alert my friend/companion/loved one/whomever to the fact that my brain was about to self-destruct, oftentimes he/she also has no idea, at first, what’s going on.

That sets the scene for what happened on Wednesday. Working in a coffee shop with a friend who’s very familiar with my history of epilepsy and has been incredibly understanding and supportive through my hospitalizations etc. etc., I had what can only be described as a sense of impending doom. I briefly considering informing him that I was in all likelihood about to have a seizure.

“Nope,” went my internal dialogue. “Wouldn’t want to inconvenience him. And how mortifying.”

Welcome to my brain, dear readers. I strongly suggest not trying to make sense of it.

And so I got up and made my way to the seizure-cell/bathroom. I’m not sure how I knew which table to come back to after the fact, but, like a carrier pigeon magnoreceptively making its way to its nest (yeah, weird analogy), I somehow found my laptop and, as an extension, my friend, who was about to leave. I didn’t alert him to the fact that anything had just happened. Rather, he said later, I was quiet and “off.” Once he was gone and I was a little more with it, I texted my husband, who in turn texted our friend, who very nicely came back to make sure I was OK (I wasn’t, really).

A little while later, while I was still recovering, it happened again. This time, though, I swallowed my pride and mentioned the aura in some overly awkward way. He, however, was super chill about it, even promising that he’d just watch something on his phone until the seizure resolved itself.

What can I learn from this episode (from which I am omitting many details, partially because I have no memory of them and partially because, believe it or not, even I have limits about the amount of detail of my semi-traumatic medical experiences that I want to share with the Internet)?

Mostly, that I should try to do a better job of remembering that the people I hang out with are, generally speaking, pretty cool. Thus, it’s OK to not make my default assumption be that they’re going to be horrified/think I’m a freak of nature/be scarred for life if they witness me having a seizure.

And, related, that I’m not a “freak of nature,” even when I’m convulsing or lip-smacking or whatever. I think—no, I know—that a significant part of my reluctance to warn others about impending seizures stems from my fear of drawing attention to my otherness.

Destroyer, yes. Monster, no.

 

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One thought on “On Communicating Auras and Daytime Seizures

  1. As a friend of yours, I would want to be there for you during an episode, and I would hope that you would let me know, because no one should feel lonely or embarrassed when they’re dealing with something this serious. Easier said than done, of course, to overcome the embarrassment that can be associated with someone seeing you have a seizure, but we (your friends) love you to death, and genuinely WANT to be there with/for you when this happens, especially if it helps. Tvb.

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