Op-Ed: Living with temporal lobe epilepsy: A husband’s story

Posted Jan 18, 2010 by John David Powell
From "Surviving Wonderland: My life with Temporal Lobe Epilepsy," an unpublished book by Sharon Powell and John David Powell
Looking back, we see that Sharon’s temporal lobe epilepsy has been a manipulative companion throughout our lives together, from our first days at Indiana State University, through the years of unpleasantness and separation, and up to today as we compile this amazing compendium of her survival of Wonderland. How would our lives be different if we had known?
Sharon writes of pain as a constant companion today, but it’s always been around for the nearly 40 years we’ve been together. When we first met, she blamed migraines for her horrible headaches and ulcers for her stomach pains. And why not? It’s what her doctors diagnosed. Auras and sensitivities to light and sound meant migraines. Stomach pains and cramps had to be ulcers, unless they were stomach migraines.
Then there were the visions, hallucinations, dreams, or whatever you want to call them. A couple of early incidents stand out. She awoke from a nap at my parents’ house to see pots and pans dancing across the room. Everyone laughed and chalked it up to another Sharon dream. Another time, Sharon’s dorm mate awoke to see a man standing in the room, dressed similar to a knight from a deck of cards. Sharon roomed alone shortly after that. Such weird Wonderland-type of incidents didn’t frequently reveal themselves to others until a few decades later.
God has a way of taking care of mothers, particularly the mother of my children. Sharon’s TLE seemed to go into remission during both pregnancies and through the toddler years, otherwise she would have bounced off the walls during those months of little sleep, late nights, loud crying, and stress.
Sharon’s condition didn’t explode within our lives until after 2000 when she started working from home for 3M and traveling to Utah and around the country. Maybe it was the stress of traveling, or the constant need to please unreasonable managers, or the difficulties associated with two teenaged daughters, or living with me, or a combination of these and other things, or just the fact that it was time. Whatever the causes, life became difficult and even strange on occasion. Looking back, we can see how her TLE flexed its muscles and took control of her life and ours.
One of the major problems facing people with TLE and their families comes from doctors and specialists who don’t listen to the patient, but forge ahead with the easiest and quickest diagnosis. You must be schizophrenic if you hear voices. You must have migraines if you have head pain and auras. You must be bipolar if you have trouble concentrating or have hallucinations or have wide mood swings.
So, the doctor prescribes what may be the wrong medication or treatment, which not only fails to address the condition, but also may cause additional physical, emotional, and psychological troubles for the patient and for the people around the patient.
Learning how to live with TLE is an ongoing process for loved ones. And so, I learn and observe.
I’ve learned to watch for the visual triggers, and to adjust our daily life around them. People who do not have epilepsy and who do not live with epileptics have no idea of the number of visual triggers that confront a patient every day. We no longer go out to the movies, because digital film-making technology creates cinematic conditions similar to standing in front of a thousand flashbulbs. We may not be aware consciously of the effects of special effects, but the epileptic’s brain still registers them and goes into a full-blown seizure.
Television production techniques may be worse for epileptics. At least you know what to expect when you go to the theatre. Commercials can trigger seizures when they’re chock-full of special effects. Awards programs, particularly music awards, are guaranteed to set off a seizure, because of strobing lights and quick camera cuts.
CNN may be the worst of the news channels. Some consultant somewhere said studies show that constant movement on the screen keeps a viewer’s attention. Sure, if the viewer is ADD. I once counted 53 graphics changes in one minute, which did not include the slow and constant movement of the map behind the anchor. I counted the number of graphics changes during one five-minute news block in the middle of the day and came up with an average of 37 per minute.
This next sentence may be more for the person with TLE rather than for the person sharing the condition. In our relationship, TLE causes inconsistencies in actions and behaviors, likes and dislikes. We’ve had periods throughout our marriage where all of sudden she dislikes or cannot tolerate something that she’s enjoyed, wanted, or participated in, sometimes for many years.
This can be anything and everything involving one or more of the five senses. The frustration and confusion to the other person may lead to inappropriate responses, anger, or total bewilderment.
One more thing, and probably an essential point to living with and around Sharon: she looks in the mirror and sees the distortions she sees in others when she’s full-bore into a seizure. It’s a carnival fun house without the fun and without any connection to reality.
And so, I tell her many times during the day that she’s beautiful and how much I love her. Do the same with the person you’re with. The person may not hear it at the time, and may not accept it, but I’m convinced that somewhere in the fog and confusion your voice and your love will serve as the light that leads out of Wonderland.