Epilepsy and Seizure Star: Linda McClure
Our March issue’s Epilepsy and Seizure star is none other than author, Linda McClure. A remarkable wordsmith and advocate for those living with epilepsy and psychogenic nonepileptic seizures, she has published her experiences and reflections in two books (and a third one is in the making!).
Her books are: “Battles of the Mind” which tells about her life with epilepsy and “Mind Games: Functional seizures and Epilepsy: A dual diagnosis,” which was written about her unique experience as someone dually diagnosed with epilepsy and PNES. Of note, it is estimated that the prevalence of people with epilepsy who develop PNES is about 12% and of those with PNES who develop epilepsy is thought to be somewhere around 20 to 30%.
Linda is originally from White Rock, BC Canada. She was a successful associate investment advisor until 2015, when a diagnosis of adult-onset epilepsy forced her to step away from her job. Years later, she was also diagnosed with psychogenic nonepileptic seizures (PNES). In her spare time, Linda volunteers as a Peer - to Peer Mentor with both the Epilepsy Association of Calgary and the seizure monitoring unit at Foothills Medical Centre. For all these reasons, we are so very pleased to present Linda with the March 2026 Epilepsy and Seizure Star recognition!
There’s no family history of epilepsy and living in a small community in the 60s and 70s nobody talked of it. I was nineteen before I witnessed my first tonic clonic seizure (known as grandmal back then) but still didn’t know it was epilepsy the woman had.
It was seventeen years later that I would experience my first seizure. I was forty-six working in a high stress job in the investment industry; a home life rapidly deteriorating. Accessing specialists, waiting for tests was a slow process taking five months to find out they were normal. Another three years passed before the next occurrence. A seizure so severe I could’ve died or suffered permanent brain damage. Although the first one was scary it was the second one that affected me the most. The realization of how devastating and dangerous seizures could be. A terrifying experience as if I died and came back somewhere else as if through a time warp.
From the outset my case was complicated. The four medications I was taking weren’t successful; the three temporal lobe surgeries reduced the severity but couldn’t stop them. Sent out of province for investigation I commuted back ‘n forth spending months without the security of family and friends close by. Throughout my travels I never once connected with another dealing with the same experiences as me. It was a lonely, isolating time spent away from home cared for by strangers. My days spent journaling and writing poetry released the building anxiety and formed the basis of my first book. The desire in letting others know they weren’t alone, provide that unbiased perspective of another struggling just as their loved one could offer family and friends the insight they didn’t have before. And by sharing my lived experience with medical professionals could broaden their scope for a better understanding of the patient perspective and how they relate to their patient.
It was after the third surgery I moved. Tired of the commute I relocated close to my doctor but within weeks of my arrival I was back in the seizure unit. It was during this visit they concluded I also had psychogenic nonepileptic seizures (PNES), also called functional/dissociative seizures (F/DS). To think I couldn’t control my emotions, to the point they triggered a psychological disturbance which resulted in seizures was unbelievable. I couldn’t accept that my seizures could be PNES. That my emotions could cause this type of physical response; emotions caused tears, laughter, joy, and anger, not seizures. And with each occurrence I wanted and insisted it was epileptic. It took years for me to accept my PNES and even longer to connect with someone who had it. While I could find books written by doctors there weren’t many by individuals with PNES and none by those with both PNES and epilepsy.
As my frustration with the doctors and paramedics use of such terms as pseudo seizures grew, the more determined I was to advocate and dispel the ongoing misconception that PNES are faked and a means of gaining attention or drugs. For these reasons I wrote my second book. The need for education and awareness was obvious and not just within the medical community.
To this day I challenge any doctor or paramedic on their use of the term pseudo seizures, I have given copies of my books to the seizure unit, placed them within the libraries at the retirement residence where I live, and the epilepsy association. I’ve written articles and been interviewed by media, and most recently recorded a podcast on living with my dual diagnosis. My advocacy efforts have extended to the student nurses who come to perform their geriatric practicums, and to anyone who’ll listen.
I’ve found living with a community of seniors twenty and forty years older has been an enlightening experience. We all know we will slow down, our bodies become achey and can no longer bend and stretch as they used to, Cataracts and glaucoma weaken our eyes, we can’t sleep or eat like we used to, and, most importantly, we need help performing activities that were once so easy. But as I got to know these seniors, I realized their situation wasn’t much different than mine.
At sixty, I struggle with the same things as they do. My vision is failing, I wear hearing aids, have problems with memory and other cognitive functions, and my balance is poor,. They monitor my showers in the event of a seizure, and I have a walker and cane. By all outward appearances, I shouldn’t need meals prepared for me, the weekly housekeeping, or access to nurses and care aids 24/7, but as with my roommates not all that ails us is visible. Depression, frustration, anger, and tears are just part of our existence here no matter our age.
Aging is part of life and society recognizes it, accepts it, and knows it to be real. And so should PNES. The last year has been interesting and fascinating so much so, a third book is in the works. I believe with comparing the similarities and the acceptance of one and not the other, there’ll be a better understanding and respect for PNES. Sometimes it takes pointing out the obvious to see what’s been in front of you all this time.
Linda McClure’s second book, “Mind Games: Functional seizures and Epilepsy: A dual diagnosis” can be found here:
And her first book, “Battles of the mind: A memoire,” can be found here: Battles of The Mind: A Memoir - Kindle edition by McClure, Linda. Politics & Social Sciences Kindle eBooks @ Amazon.com.
