A Blog of Personal Thoughts
Moments of Epilepsy
April 2026
Sometimes I can go for two weeks without any moments of epilepsy. When I have those long periods, I think I may be epilepsy-free for the rest of my life, only this neurological disorder is not temporary. Has it interrupted my life? Not really but it has given me some challenging moments and some intriguing ones.
The challenging moments come when I have what is now called a generalized seizure, one that takes place on both sides of the brain. The easier moments come when it is what is now called a focal seizure, one that occurs in a part but not all the brain. I cannot describe my generalized seizures because I lose consciousness and am not aware of anything. My husband, son, or son’s partner have described them to me later. It takes me a while, days, to come fully out of those, to be able to think straight again. I base my description of them on what I’m told. I find some of the focal seizures fun and offer some of those
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A Floating Brigantine in Front of Set-Koy-Ke’s Painting
I sit at my desk writing, I look to my left. Above the doorway floats a brigantine, its two-masted square sails full of the day’s wind. The image holds shades of grey, outlined in three dimensions against the white wall of my study. My great-grandfather captained schooners not brigantines, but it does not strike me as odd to see this ship floating in my study. Such images, whether illusions or hallucinations, are usual for me. I like this image. It stays.
It superimposes itself in front of a Kiowa painting. Painter Set-Koy-Ke’s image is gold on black, titled The Beginning of a Story. The storyteller speaks to three men on this black night lit by a gold moon that shines between the storyteller and his listeners. It hangs on my study wall above the door. I look up from my desk and know others ponder and tell stories rich with meaning.
I then hallucinate my ephemeral, grey, two-masted brigantine but once. It now remains an illusion I can see as I sit or walk. Like the Kiowa artist, I am a storyteller, especially when the hallucination of a brig superimposes itself over Set-Koy-Ke’s work of art. This old brigantine floats across the ceiling of my life to touch watery skies, one image my brain continues to show me. I hold on to that nerve when I need an image of peace to wrap around my shoulders.
Nap in a Boston Hotel
On my way home to Alaska from Lunenburg, Nova Scotia, where one of my great-grandfathers lived with his wife and three children, I spend a few days in the city where I was born, Boston.
I take an afternoon nap and wake to see a painting of a masted ship opposite me. It is 1851. Late last night, we sailed into Boston Harbor on Papa’s schooner. My father is Captain Tom. Today he dispatched my mother and me to a hotel to bathe and sleep, while he delivers some goods from the West Indies. My brothers help and then resupply firewood for the rest of our journey home. I am ten-years-old. Why am I so specific that it is 1851 and I am ten?
I wake and lie in bed for many minutes one hundred seventy years ago. Try as I might, I cannot get back to today, 2019. I relish being my own grandmother. I am Mary, Papa’s daughter, his youngest and the little girl he adores. My mother, two brothers, and I have just journeyed with Papa to Puerto Rico and the Caribbean, so warm in September. Mama and I bought material for dresses, and shirts for Papa, George, and Will. We ate avocadoes and mangoes. I still taste their soft sweetness.
I sense Abigail and must turn on the television to return to the present. Will its stimuli break the misguided amblings of my neurons and synaptic pathways?
In my study hangs a Winslow Homer etching of Boston Harbor, dated 1852. All sails down, no ship arrives or departs from Homer’s scene. Did one of these docked ships belong to Captain Tom—The Pousland or The W.N Z.? Had I been on that ship with him and my great-grandmother? No, just a comfortable, long hallucination that did not want to release me.
On the Bathroom Floor
Another pleasant one I felt coming. I laid down on the thin rug on the bathroom floor in the middle of the night, not awake but not asleep either. I heard my husband come downstairs and knew he was headed for the toilet. I didn’t want him to trip over me. I said, “I’m on the bathroom floor. I need a blanket and a pillow.” He brought them to me and left. The good part of being married to a registered nurse is that he doesn’t panic; he treats such events as natural, which they are for me. I immediately fell asleep. I don’t know what he did, but he left me warm and comfortable on the floor. I appreciated that.
Albatross
Today we read Coleridge’s The Rime of the Ancient Mariner. I am 12-years-old. I feel a dead albatross around my neck. He’s a weighty fellow who pulls on my neck and shoulders. Even my upper arms ache. He’s been there a long time and stays for decades more.
I remain unaware he is there until I feel twenty pounds of this dead bird drag on my neck. My tongue feels withered at its root. I cannot speak. I choke on the colors emerging from my gut. My brain is parched and glazed. I am weary in this world.
This heaviness follows me through snow and mist. My tongue becomes immobile and the right words do not firm. I cannot speak. The weighty albatross does not let go. My eyes grow weary. I hear sounds that do not exist. I sense tastes and smells and thoughts that are not there. Something touches me. A speck, a mist, a shape, they plunge and tack and veer. They throw me off balance, figuratively for a moment, then literally.
The albatross never leaves me but sometimes I do not feel him. Then suddenly the weight is back. I plunge, I tack, I veer again.
Six decades later, I see an epileptologist who tells me what I’ve felt since the moment I came out of my coma at age five: I have epilepsy. Coleridge’s albatross fades into oblivion. For months, I ponder the doctor’s statement, roll the word around my tongue—epilepsy, epilepsy, epilepsy.
No longer will I keep this secret hidden. I tell people. Fourteen months later, the weight of bearing this heavy secret falls away. Anxiety’s albatross drowns in the ocean of my new knowledge and without telling him, my husband notices. The weight of someone finding out leaves me. A calmness enters my soul.
Riding Tenth Street Treetops
I drive down 10th Street in Topeka. On our way toward the Gage Park area, perhaps going to the park and the grocery store, I feel the Camaro leave the pavement and ascend to above the elm and oak tree level. Driving above the treetops feels glorious.
“Can’t you just see we’re driving above the treetops?” I ask Seth, age 12.
He looks at me from the passenger seat. Deadpan and firmly, he says, “No.”
Hm, I think. I should have had had four children. Then one of them understood my flights of thought. Obviously, this child is far more practical than I. He remains that way to this day, but he also remembers that moment. I wonder if he then thought he was in danger with such a driver.
I once asked my epileptologist if he ever saw blue leaves on a tree. He looked me straight on and raised his voice a bit, “No!” Later, I asked two friends that same question. Like the doctor, they each looked at me straight on and said, “No.”
C# Is Green
C# is green. Blue leaves fall from a live oak tree on a Southeast Alaska November evening. I lean against a wall for a few minutes until it suddenly jumps back eighteen inches, and I almost fall. I smell bread baking as I kayak through the wilderness tens of miles from any dwelling. I hear the church bells of St. Petersburg as I lie in bed in the woods of my Alaska home far from any Russian Orthodox church. My knees grow weak and I must hold onto or lean against something to remain standing. I grab onto the wall to walk down the long, wide hall on the second floor. Some days, I float out my bedroom window to sit on a branch of the Norway maple tree. With varying images, I have lived this way all my memoried life.
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Okay, so maybe I am different, but I’ve lived this way all my life, so I view it as normal. I appreciate the medication because it controls the unpleasant focal ones and the generalized ones. I just need to relish the unusual, odd, bizarre moments I’ve had.
I planned to write a memoir about having epilepsy until an agent said publishing has a lot of those and followed with “You’re a scientist. Write about the science of this.”
I realized having these weird moments led me to the science of human behavior. I received my PhD in this field. The book I work on now is about how my unknown epilepsy led me to a careful, inductive, analytic study human behavior as a natural science.
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