Awareness of a Different and Very Uncomfortable Variety

I’m nearing the end—I think; fingers crossed—of an episode of postictal psychosis that began a day after a cluster of seizures I had on Thursday night, continued through the weekend, and seemed to get worse Monday afternoon, perhaps because my brain decided to surprise me with another seizure cluster on Sunday evening.

Of all the weird, often stigmatizing health stuff I’ve dealt with, postictal psychosis might be the most difficult, and the most confusing, both to have and to talk about. I’m shameless enough, at this point, to overshare most details of my life, ostensibly in the name of raising awareness (and providing entertainment). Postictal psychosis is different. It’s scary in a way my seizures and other health issues, physical and mental, aren’t, and whenever I consider disclosing that I’ve experienced it, I worry that readers’/friends’/family members’ opinion of me will irreversibly change once they know “the truth.”

“The truth,” of course, is that I sometimes have a really challenging complication following seizure clusters, and there’s not much I can do about it. “The truth” is that I shouldn’t want to be friends with people who think that neurologically caused psychosis and/or mental-health-related psychosis are things to be ashamed of. “The truth” is that I shouldn’t care so much in general.

The truth is also that one of the symptoms of my postictal psychosis is that it makes me legit paranoid, so there’s that, too.

Though I feel strange whenever I acknowledge this, I’m grateful that I’m not conscious during my seizures. I’m someone who values being in control, at all times, in all situations, and epilepsy has taken some of that away from me. However, the fact that what I say and do while postictal is recounted to me rather than recalled by me allows me to externalize my seizure disorder, at least to a certain extent, which in turn allows me to more fluently laugh at that version of myself, and why shouldn’t I if it makes me feel better? But I purposefully separate myself from Seizure Me when I joke about her/me, a protective measure eased by the small mercy that I have no ictal or postictal memories.

And that’s one of the aspects of postictal psychosis that makes it so terrifying—that I’m simultaneously aware, or semiaware, of what’s going on and not in control of (many of) my thoughts and emotions.

A couple of days ago, after snapping at my husband, I turned to him and growled, “I’M USUALLY A LOVELY PERSON.” This claim may have been a sign that I was still delusional, but it nonetheless illustrates how GD frustrated I get when I’m in an altered state, know that I am, and feel completely powerless to change it. I’m fortunate, though, to be married to someone who’s learned to respond to such declarations, and all the other off-the-wall stuff I say while I’m in the middle of an episode of postictal psychosis, in a calm, rational manner so that we can most safely and comfortably bide our time until we’re able to return to our “normal” life together. He reassures me that he loves me, no matter what, and that this whole me-being-postictally-psychotic thing is just a temporary blip. He reminds me that my brain is messing with me—that I haven’t done anything to cause or deserve this.

I listen to him, knowing that I have to try to accept his help, trust that his words will eventually start to make sense, and ignore this current neurological chaos.







2 thoughts on “Awareness of a Different and Very Uncomfortable Variety

  1. Hello, my name is Chris. We have a mutual friend in Dave Ross. He sent me this way as I’ve just been diagnosed with epilepsy and thought your writing could help. I have to say that this far I’m quite intrigued and shall continue to read if you don’t mind. I’m still trying to figure things out but I appreciate his help and your reflections.

    1. Hello, and welcome! Sorry to hear that you’ve been diagnosed with epilepsy, but I’m glad you found your way to my blog. Let me know if you’d like to chat via email or messenger; I was also diagnosed as an adult, and I know that the initial period can be especially challenging and confusing. Take care.

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