I couldn’t go to work today. COULD NOT go. Me. Me! Me!!! The Me I know as Miss Responsible (at least before), or Miss “Took Copious Notes and Asked Earnest Questions of Every Professor She Ever Had” (at least before), or Miss Order of the Coif & Law Review (at least before), Miss Top 5% (at least before)… I COULD NOT go. I could not go, as surely as if I had been very heavily & securely shackled and chained to my bedroom floor with no tools of any kind within reach.
Then, abruptly at 12:11 p.m. – perhaps because Miss Self-Blaming loves to make Miss Responsible feel horrible because she has not done anything productive on this (fucking difficult) day, I am suddenly ORDERED (by a part of myself I don’t know, and, frankly, do not ever want to know) to write about “temporal lobe epilepsy with localized/partial seizures.” This particular moment — Wednesday, August 12, 2015, 12:11 p.m., convinces me that my entire universe — the physical, the emotional, the intellectual, and the creative — has turned into one long, very long, seemingly endless, “temporal lobe epilepsy with localized/partial seizures” episode… at least for right now.
Helpless to help myself, mostly, except for a stubborn, almost instinctual, ability for self-care, feeding & watering. I’m conscious, but either (1) not able to speak aloud, or (2) uncontrollably babbling each & every random thought my storming brain generates. That’s how you can think of a seizure: an electrical storm in the brain. Complete, sometimes, with inner thunder & lightning & high winds. I sometimes wear earplugs, or I sometimes listen to the music I love — and there is a lot of music I love — loud enough to drown out all the sounds that go along with being in a room in a house in a city on planet Earth in the calendar year 2015. Block out the loud, the abrupt, the frightening; nurture the calm, the logical, the safe.
What has saved me thus far, mostly, is the fortunate fact that even in this fucked-up state I can still write — albeit with tons of spelling, punctuation, and grammar errors. At these moments, in particular, I thank God for the generations of computer whiz kids, who gave us things like word processing, complete with editing capabilities, and pretty good grammar & spellcheck. I thank them for these things because another aspect of these seizures is a barely functioning short term memory, and a dreamlike, almost hallucinatory perception of myself and my surroundings… very vivid while it’s happening, and very ass-kicking after it’s over. I do not recommend it as a way of life, or even as a temporary experiment.
I think, but do not yet know for sure, that my “temporal lobe epilepsy with localized/partial seizures” may be permanent, and treatable only with an alarming number of drugs, needing to be taken as many as four times a day. This entire state of affairs is due to the fact that I required brain surgery for a nonmalignant, though large, tumor, which was between, or around, or next to, my frontal and temporal lobes, and as a special bonus, was wrapped around the main aorta of my brain and my right optic nerve. The other permanent souvenir of my tumor and surgery is a 50% vision loss, more or less, in my right eye, and a funky-looking scar on my head that usually isn’t visible (thank god!) because I have very thick, coarse, wavy hair. Horsehair, I used to call it, and I am profoundly grateful for it now, for without it I would remind people of Frankenstein, and quite possibly frighten some children.
I’ve tried to write this without it sounding like a 30’s blues song… what comes to mind is “Down The Big Road Blues,” by Mattie Delaney (born 1905). When I am in this state I find myself missing my daughters… when they were children especially. I miss so many things about them! I miss listening to music or watching a movie or playing a game or just talking with them. They love music, and singing, and laughing, and playing Scrabble intensely. Aren’t the intimate connections, with our intimates & beloveds, what make life worth living? I am so humbly grateful for my beloved partner, my daughters, my dearest human & animal friends, my fellow creatives & nonconformists.
Without all of you, I would be lost. As part of a team — even if it’s only a team in my imagination — I am able to keep doing the next necessary thing, whatever that may be. Sometimes it’s cleaning the floor. Sometimes it’s snuggling my dog. Sometimes it’s work. Sometimes it’s reading. Sometimes it’s meditation. Sometimes it is putting my arms around a living, breathing, warm human. My daughters, as babies, taught me the value of plain old physical closeness to someone we love as we love ourselves. So, I say to myself… “Shoot The Loop,” just like the Acoustic Alchemy song my beloved partner introduced me to.
Thank you for your time and attention. May your day be blessed with clear thinking and right action and peace. May you, may I, and may all the human world keep on waking up from our “very long dream,” into a brilliant and fascinating future. Fascinating. Brilliant. All of us.
2 responses to “Temporal Lobe Epilepsy With Localized/Partial Seizures, a personal essay”
Those of us who have been disabled — either by a single condition or many — find we are no longer who we thought we were. Different parameters now confine us…define us. A different viewpoint is imposed on us, whether we like it or not. Yet there can be great beauty associated with the loss of our old selves. An unexpected shift in perception. You’ve captured it.
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Thank you so much. That’s what I was trying to do. You are such a thoughtful & perceptive reader….
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