A Blog of Flashbacks Anniversary of My Epilepsy Diagnosis
July 2026
Today, 15 July, is the 7-year anniversary of my epilepsy diagnosis. I am delighted. I now have reason for my odd thoughts, feelings, and behaviors. My brain is different from the one I was born with. It is different from the brains of most other people.
I learned an interesting fact last week. Only 25% of people with epilepsy have tonic clonic seizures, the seizures that used to be called grand mal. A tonic clonic seizure and any other generalized seizure affect the whole brain. During a tonic clonic the person loses consciousness and tremors, drools, and shakes uncontrollably. There are other generalized seizures where the person loses consciousness but does not shake or drool.
I don’t have tonic clonic seizures. Seventy-five percent, 75%, three quarters, ¾ of people with epilepsy do not have tonic clonic seizures. This leaves a lot of us with some other misunderstood and misdiagnosed type of seizure. Sometimes we live for years or even decades without the proper diagnosis.
I have three kinds of seizures—generalized, focal, and absence. During a generalized seizure, I lose consciousness. I pass out. Both sides of my brain, all my brain seizes. I don’t drool, bite my tongue, or shake. Why did I not know this before I reached my 70s? Why did I get misdiagnosed so often—personality problems, psychological problems, whatever those two mean—PTSD, a heart problem, vasovagal response. In my 40s, doctors repeatedly told me I had a heart problem. I was jogging daily, had usual blood pressure of 90/60 or 100/70, a pulse around 42 or 46. Why does that indicate a heart problem? It’s the abnormal electrical activity in the brain of someone with epilepsy that can cause some heart arrythmia. I noticed I occasionally had an irregular pulse after jogging or even while resting.
I also have focal seizures, that is, one side of my brain seizes. Sometimes I just feel weird, out of sorts. Other times I can’t think or function. The room spins out of focus. My words jumble out of order for many sentences. Maybe I hallucinate in any of the five senses—hear, see, taste, smell, feel things that are not there. Perhaps I float above the treetops.
I still have absence seizures. I look as if I’m paying attention, but I am unaware of anything in my environment. One time, a colleague asked me if I’d finished the portion of a project. I told him he never asked me to. After a few moments of arguing, I realized he was right, but I had no recollection of his asking me. Another time as a teacher, I saw a student not listening to me. I flashed my fingers inches in front of his eyes. He did not blink, a good sign of an absence seizure. I called his parents and they took him to a doctor: he ended up on anti-seizure medication.
My medication is marvelous. It reduces the number of moments. A moment is a hallucination, being out of my body, lightheaded, having vertigo, having nausea, being dizzy, having an illusion or an aura, or losing consciousness—any sign of a seizure. Some moments are delightful, some frightening. Except for the auras which are short, the moments have sometimes lasted for 10 minutes or ten hours. One time the moment lasted for four days. That was a secretive and bad two days at work and a weekend grateful to be home.
After I ended up with the diagnosis, and the epileptologist increased the medication to 2,500 mg per day, I can function with some sense of normal. These days I look at moments lasting a few seconds except for the rare occasions where I have a focal or generalized seizure. The generalized seizures seem to occur post-surgery.
I am grateful for the auras. Dostoevsky, who had epilepsy, found these precursors of a generalized seizure ecstatic. I agree with the ecstasy of that moment, which for me form and last 3 to 10 seconds. However, while they precede a focal seizure, they do not always precede my generalized ones. Sometimes with a generalized seizure, I lose consciousness without warning.
If it took so long for me to receive a diagnosis, how do I remember the images? I have lots of years of these images. I’ve often used them when writing a poem. They create bizarre but fun to me, weird to others, images. Across the decades I’ve had many of these images. Therefore, they stay. I remember close to 50 of them. Here are some of the short ones.
* * *
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.
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 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 his 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.
Riding Tenth Street Treetops
I drive down 10th Street in Topeka. On our way toward Gage Park, I feel the Camaro leave the pavement and ascend above the elm and oak trees. Driving above the treetops feels glorious.
“Can’t you 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 would have 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.
* * *
Years later, I asked my epileptologist a similar question.
“Don’t you see blue leaves on trees sometimes?”
“No!” his voice raised slightly.
Okay, I thought. His response was clear.
A month later I asked two friends, “Don’t you see blue leaves on trees sometimes?”
Their facial expressions did not change. Their answers were flat and clear. “No.”
Four to one. I guess driving across treetops and seeing blue leaves on trees is not normal. It was not only the answer of no, but each person gave me a matter-of -fact answer.
Before diagnosis, I occasionally kept track of these aberrant behaviors of mine. In 1974 and 1976, I counted them for 100 days each year. In 1981-1982, I counted for of them for 14 months. In the spring of 2019, I began to count them daily. My definitions were far from perfect since I didn’t know what was going on. However, one significant day occurred in 1976 when I had 32 of these weird moments, my highest count of any day. I met with my PhD advisor who asked if I’d been smoking pot. Offended, I responded with a sharp no. What I failed to tell this experimental psychologist was that as I walked up the hill to his office, I walked on treetops, hallucinated, and had other weird behaviors. In those days, I didn’t want anyone to know something was wrong with me.
Now I have counted these behaviors for over 9 years. I tell anyone who asks or will listen. I am surprised at the number of people who say a relative has epilepsy.
I thank the cardiologist whose wisdom was great enough to see I had epilepsy and not a heart problem. I remain deeply grateful to the epileptologist who diagnosed me. I thank my present neurologist for keeping track of me. All three of them were interested in the charts that show my epilepsy data.
Here is my monthly standard celeration chart of my 7 years of daily recording. Not only does the number of moments decrease, but the duration of the moments decreased, by ÷360, from July 2019 to July 2023.
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