Since this blog has a broad and diverse readership, I often find myself thinking, "Is this something okay to write about on the blog?  Should I write about therapy?  Should I write about my reflections on what happened in the classroom?"  I wondered about that as I considered writing today's post:  is it okay to write about auras?  Then I figured that most folks reading this blog know that I had brain surgery a year ago, and many of you were deeply disturbed by the video of Biffle removing my staples, so really, auras are mild by comparison.

Auras are a pre-seizure phenomenon, and they're part of my life now.  My neuro-oncologist informed me that for brain tumor patients, the question is how to make their seizures manageable--"Not," he stressed, "whether you'll have seizures, because if you've had brain surgery, you'll have seizures."  The very good news for me is that I haven't had an unprompted seizure since Dec. 24, 2009, because I'm on effective medication.  But I do have auras, a few a month. 

Most often the auras happen just as I'm falling asleep at night, but our recent fever 'n' ague experience temporarily changed things.  Because I had 24 hours of not keeping any food (or even water) in my system, I also didn't have the normal amount of medication circulating in my bloodstream.  This means that the auras became a bit more frequent, and they happened occasionally during the day, when I was conscious enough to try to observe them.

The other morning I had one while Biffle was on the scene, which almost never happens.  So I talked to him about it, both to track my own mental state and to try to describe it. 

"I feel an aura coming on," I told him.  "Yep, it's definitely an aura.  It's completely unambiguous that one is happening, but I don't know how to describe the experience, how to tell you that I know I'm having an aura.  It's like I'm not fully in this moment, like I've separated from what's happening."

I looked at him.  His eyes were wide with heroically-suppressed Alison-seizure PTSD.  I asked, in complete seriousness, "Am I coherent, or am I speaking in metaphor?"

"You're making sense," he said.

At that point the aura started fading, and I felt the exhaustion and nausea that follow. 

I used to experience a weird smell as an aura was happening, and that's very common, but that doesn't happen anymore.  I find it almost impossible to describe the very distinct feeling that characterizes an aura, but I think my last question to Biffle gets at it as well as anything:  I truly didn't know if I was speaking normal language or if I was somehow speaking in metaphor.  What would it mean to be speaking in metaphor?  I'm happy to hear that I was coherent throughout the entire aura, and I'll continue trying to describe this interesting new mental phenomenon in my life.


Claire said...

My totally inappropriate response: this reminds me of the star trek next generation episode where Picard was with the guy who only speaks in metaphors of a kind and so Picard recounts for him the Tale of Gilgamesh. Alison on auras makes me think: Gilgamesh and Enkidu at Orak.

Aaron said...

Interesting. I've never heard of this before. This post reminds me of Jill Bolte Taylor's talk on ted (http://blog.ted.com/2008/03/12/jill_bolte_tayl/). She's a neuroanatomist who had a stroke and was ale to dissect the experience while it was happening.

Also, I totally forgot about that next generation episode! ahhh we're about to netflix all of them.

The Mom said...

Thank you, Aaron. I'd forgotten her name, and was going to look it up to tell Alison about it! I'm glad you have the url for her! Yes, that's exactly what this reminded me of.

Anonymous said...

Oh I saw the ted tube- it was fabulous! I've worked with folks with seizures and auras often precede them but it sounds like for you they are instead of? Huh.
I'd be happy to hear about your therapy! or whatever!

Tracy said...

I experience auras before getting migraine, also accompanied by visual auras (and often times going completely blind) & losing the ability to move the left side of my body- it's really strange to try to put into words what is going on. It's interesting what our brains/bodies do to prepare us for the big moment- when I feel have an aura, I race home & pop my pill & get into a dark room.

KellyRose said...

I'm glad you posted this. I love that you are putting a human perspective on something as scary as a brain tumor. Thanks for being brave and strong enough to not only go through it and keep pushing on, but write about it as well :)

Alison said...

Thanks for all your comments, folks! I do remember that Star Trek metaphor guy, Claire. Starrlife, so far I'm only having auras and no actual seizures. For that I thank Keppra. Tracy, Biffle has migraines, too, and has described auras--although his seem not to have the weird metaphory quality.

Alison said...

And rest assured, KellyRose, I'll keep posting!