I live with epilepsy, with all its glorious and frustrating facets

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In 2018, my husband and I went to Tulum. What I had remembered as a dusty strip 20 years ago has now become a world-class destination, but looking back in time churned up a lot of memories. Living with epilepsy, I have always existed in a neuro-atypical space, one of neurons and charges, galvanized energy and, as my childhood neurologist described them, “lightning storms in the brain.”

Thinking about my seizures sometimes spills over into sleep. I dream I’m in a tent, I’ve had a seizure, and I am panicked. I will be startled awake, scared. What if my dream was a vision, a warning? Am I unconsciously tapped into something in the complex elliptical circuitry of the universe? Although about 50-million people globally are affected by the condition, epilepsy is still, however, the domain of the hushed, the misunderstood, the mythologized.

For me, the condition is genetic. My father and his siblings fondly recount their brother, Charlie. Born in the 1940s, he never went to school, had daily seizures and was remembered for wearing a hockey helmet until his untimely death at the age of 12. Luckily we’ve moved on with better treatment options, but this is the legacy I have inherited.

Putting the pieces of Dad’s dementia together

Children with epilepsy still fumble around in the dark. A psychologist friend asked me to speak to one of her clients – a 10-year-old with epilepsy – whispering, “she thinks she’s the only one who has it.”

I know those feelings well: isolation and fear. My epilepsy started out as an absence seizure, a complication. Then I moved into the teenage angst of seeing my friends get their driver’s licenses. By then, it was generalized – or grand mal – seizures and a program of medication.

“Do you see ghosts?” the 10-year-old asked.

“Absolutely,” I answered. “At least, that’s what it feels like.” Few know this, but there is a constellation of illusory phenomena that is common with epilepsy. Most of it relates to misfires in the brain, déjà vu and vague familiarities, but the young mind bends and turns under these impressions. Seeing ghosts seems the closest we have to describing it, signalling an alarming deficit in the English language. Growing up, I was convinced I was psychic. I dreamt about people before I met them. I found lost objects. I tweaked a keen sense of intuition, meditated on astral travel and kept vivid dream journals. I became obsessed with clairvoyance and the paranormal. I began to read tarot. I wondered, “Was epilepsy my superpower?”

Most of the time, people see only what epilepsy takes away – your dignity. While seizures leave limbs flying, difficulty breathing and a bitten tongue, the postictal state brings its own state of altered consciousness, causing drowsiness and amnesia. I’ve had seizures on bikes, in cars and in countries where I don’t speak the language. I’ve woken up everywhere from hospitals to ditches. One time I even rode my bike half a mile through traffic before a friend saw me riding erratically and took me home. But even after biking unconscious into traffic, I am still alive.

In Tulum, I stare out at the sea. I. Am. Still. Alive.

Epilepsia is the name I’ve given my female companion who represents the duality in me. She’s the one who stops the clocks, who transcends time and space. She’s the flirt, the temptress, the expert conversationalist. She’s the one who hates to leave the party. I’m the stern sober one, keeping myself away from bright lights, booze and long bouts of sleepless nights under flashing house beats, the places that would induce a lapse in consciousness.

Epilepsia has not been without her gifts. She sent me a mother who protected and prayed for me when I didn’t call, when I hitchhiked through the night. Mom begged me not to travel alone, but Dad said simply, “It’s your life.” Sometimes even a wild mare has to learn.

Epilepsia also sent me two older brothers, caretakers who managed my 10-year binge of poetry and partying, who gave me curfews and put alarms on my phone to take my meds. “You need to sleep, Mo,” they would say, over and over. But I was stubborn and years away from learning the word, no. I refused to live within the confines of the word, epilepsy.

Eventually, I embraced the fact that I was a walking nuclear reaction, full of hydrogen atoms and stardust and fire. I began to understand that somehow, I belonged to a spirit world, especially after reading Anne Fadiman’s book, The Spirit Catches You and You Fall Down, the title is a translation of the word epilepsy in the Hmong language. In the Hmong culture, most epileptics grow up to be shamans. One time, I thought that was me; I was born to be a shaman.

Epilepsia sent me a sweet husband, who has always quipped that he had to hold on to me by my coattails or I would float off into the stratosphere. It’s true that I was always set to drift.

And perhaps before I was ready, epilepsy conjured to me a baby girl – whom I dreamt of before she was born – who was so perfect and timely that she signalled an end to my roaring juvenescence. The drowsiness of pregnancy stabilized me into a quiet that my molecular makeup had never known, and for eight years, epilepsy left.

“Are you scared you might have another seizure?” The young girl asks.

“I sure am,” I say. “But it’s okay to be scared sometimes. You have to be really brave to live with epilepsy.” Fierce bravery, creativity and uniqueness are all equal trade-ins for a neuro-atypical existence.

Recalibrated after our Mexican holiday, my husband and I entered the Cancun airport to a long line of travellers. A man at the counter has fallen, and my husband quickly shields me when I see he is having a seizure. Briefly, I wonder if I caused it.

We land in Montreal and begin the long walk to the gate for our connecting flight. When I wake up, I am on a stretcher, in a Montreal airport broom closet, and the flight is gone. Time has passed, and my consciousness has travelled somewhere with it. When I get home, it is time to rebuild.

For now, I have reached equilibrium again, including the practicalities of doctor consults, medication adjustments, and finding a comfortable space where the spiritual meets the physical.

Although I sometimes feel I teeter on this astral intersection, I don’t resist an early bedtime any more, nor do I keep my condition a shameful secret. I explain, I educate. Even to my students or my kids, who may not necessarily get the full severity of what “Mom has.”

Hopefully, some day there will be a cultural shift in the conversation, and I will pave a way for the ones who will come after me, like my 10-year-old friend. Or, I suppose, it’s never too late to be a shaman.

Mo Duffy Cobb lives in Charlottetown.