The other day I was thinking about something, but then I lost the word I wanted. Then I lost the thought altogether. I crinkled my nose and tried to find it. No luck. Whether the hesitation was my epilepsy brain, my insecurity around it, or simply the slower pace my epilepsy brain has to take (sometimes), I could not distinguish. It did give me an idea for today’s post, though.
I’ve had an epileptic’s brain since 2007, at least according to Kaiser, who first diagnosed me after my “first” seizure. My husband had to drive me to the hospital, probably at bullet speed, while I frothed and contorted. (Think of Elaine dancing on Seinfeld). The truth is, I was having seizures as early as age 19, or even earlier than that. When I was in college in the late 80s and 90s, I had frequent bouts of déjà vu, particularly around the time of my college graduation in 1991. Turns out, déjà vu is an actual seizure-related thing, or it can be. (Many people with epilepsy describe the same phenomenon. Other people with seizure disorders also have “auras” where they might see colors or smell smells that don’t exist. Epilepsy: all kinds of fun for all kinds of folks!)
I would come to learn that stress can trigger a seizure, and back then, I did not yet know if I was going to go to graduate school or going to get a job. So, yes, stress. Ultimately, I would attend graduate school, and the partial seizures I had mis-attributed to déjà vu faded into regular life, regular stress. Once I went back to school, déjà vu rarely occurred.
Later, while I was in grad school, I would have an event where I lost my speech, and could only speak in ill-structured, nonsensical gibberish. It was aphasia, a speech disorder commonly found during or after a stroke. I had just had one. A stroke, I mean. It was terrifying. Later it was diagnosed as a TIA (transient ischemic attack). Not quite a full blown stroke, but its milder, less life-threatening first cousin. I call it a “stroke junior.” It passed; life returned to normal, but it hovered there, lurking, that…one day…maybe. Many years later, I was diagnosed with a blood disorder, ITP. ITP was almost certainly the cause of my “stroke junior.” The disease causes platelets to clot (or to bleed, depending) and I would need to take a daily baby aspirin for the rest of my life. The ITP explained the event, because I had likely had a clot that had gone to my brain, hence the mini-stroke (the TIA). It was a bonus experience that actually is unrelated to epilepsy. Twice lucky, I guess. Equally strange experience, though. [For more on my alphabet soup disorders, check out “I wish I weren’t so interesting,” July 2021.]
Having epilepsy (now politely described as “seizure disorder”) is a strange way to live. In many ways, I am on both sides. I live with the regular humans a majority of the time. I am like a regular human most of the time, too (albeit an odd one). Sometimes, however, I live in the liminal state, a place between consciousness and the seizure I am about to have. Or the seizure I just had. When I pretend to live as a regular human, I know that I am, at all times, vulnerable to disappearing. I could have a seizure. I could wet my pants. I could “zone out,” and my friends or colleagues would not know that I was actually having a partial seizure. For these and many other reasons, I am not “normal.” I don’t drive. I don’t swim unattended. I avoid stairs and ladders, and it’s not because I’m superstitious, even though I am. Liminal.
At a Puerto Rican restaurant, I once face-planted into a plate of rice and beans. My husband once had to catch me as I had a “drop seizure,” during which I did exactly as the name suggests. He caught my arm and slowed the fall. Fortunately, even though I still landed on the wood floor, I had not hit my head. My elbow hurt a little, but it was a damn good save. Small price, and it could have been so much worse. It could have been a one way ticket to the other side. The real other side. (Then again, I wouldn’t mind meeting Patrick Swayze.)
At a Puerto Rican restaurant, I once face-planted into a plate of rice and beans.
Feisty Quill
I wouldn’t mind meeting him.
I live on the in-between, even when I am not having a seizure. I know I could cross the threshold of awareness at any time, and, while I try not to think about it too often, I know it’s there. I can be here. Then I could be not-here, and take a brief jaunt to unconscious town. Or, of course, there’s the possibility I could just, well, die.
Because of these two addresses I live in, I am not afraid to die. It’s a blessing really (if you will excuse the religious tone of the language.) I know what it is to be liminal. Epilepsy: There. Not there. There. Not there. Epilepsy isn’t painful, at least not in the way we typically label pain. Immediately after a seizure, though, there’s yet a third place. The fence.
When walking on the fence, one might talk. One might walk. It can feel a little like sleep walking (and I do that, too). The world is fuzzy, or blurry. I don’t see anything—not in the sense of being temporarily blinded; it isn’t that. It’s just a type of tunnel vision in a way. I am looking at the window. I am not seeing the window. I am looking out of the window, but I do not know what I am seeing. If you have ever fallen asleep whilst reading, it’s a little like that. If you’ve ever fallen asleep while driving, it’s a little like that, too. “Holy hell, what’s happening?” the brain might ask. The brain might answer: “you need a nap.”
Public service announcement:
Feisty Quill
Avoid sleeping while driving.
Avoid seizures while driving, too.
After every seizure, I need to take a nap. Immediately. I don’t know precisely how long I sleep, or how long I need to, but I know that I need to. Immediately. I once had a seizure in the dollar store, and I was still completely unconscious. The manager came over and told my husband, “she can’t sleep here.” Husband said, “She’s not sleeping. She just had a seizure.” The manager was embarrassed and just…walked away. Later, when I came to, partially, I went home. To take a nap.
And now, unrelated, seizure-free and unencumbered, right now I need to take a nap, too. See you later, my people. Thanks for reading.