Lisa sits across from me in a crowded coffee shop and speaks in a combination of hushed and muted tones as she recounts her story of living with epilepsy. Her bright blue eyes are rimmed with emerald specks of green, the brightness of which belies the hordes of medication I know she takes every day. There’s a single man sitting close by, laptop open, who seems to study us in a pirate-like one-eyed stare when Lisa mentions “grand mal seizure” or “brain surgery.” He seems to be searching for the image he would expect to accompany those words — instead of two thirtysomething women on a Sunday evening.
Lisa’s epilepsy story began in 1977 in the idyllic village of Wonewoc, Wisconsin, population 834, set in the unglaciated region of northwestern Wisconsin 30 minutes west of Wisconsin Dells on State Hwy 33. Lisa’s first seizure began when she had a high fever and a viral illness as a small toddler. Her parents tried desperately to cool their quaking child by struggling to put cool washcloths on her while her limbs twitched and placed her in a cool bath as the seizure continued. Because the local hospital was not equipped to care for critically ill children, a still-seizing Lisa was transported via ambulance over country roads to Madison to seek medical care. By the time her seizure abated, she had a temporary right sided paralysis and a permanent change deep in her brain that would last a lifetime.
Lisa doesn’t remember her first seizure, but she remembers receiving anti-epileptic medication in sugar-sweetened water every day until she was five. She recognizes the fear in her parent’s faces as they recount the story of her first febrile seizure. And she can remember stark details of the day when her seizures came back.
UW – LaCrosse seemed like the perfect place for Lisa to go to college. It was a well-renowned university, a reasonable distance from home, and had a fantastic art program, which was Lisa’s chosen major. Early in her college career, Lisa remembers waking up, almost in a trance, as EMTs and her boyfriend were talking to her. She had heard a sudden crack which she later realized this was the sound of her head hitting the bed frame as she succumbed to a grand mal seizure. Later that same day in the hospital, she had a hard time recognizing her first visitor, her mother, but as her memory returned she also began to understand that the unusual “episodes” that she’d been having throughout her childhood and early adulthood were actually complex partial seizures.
Even as Lisa’s health history was starting to make sense, her seizures were spiraling out of control. Not too long after her first seizure, Lisa had a grand mal seizure in her residence hall at college. Unaware of her seizure history and uneducated about epilepsy, the residence hall personnel assumed that Lisa had used drugs. Lisa was strapped to a metal chair and “questioned” in her unconscious state until her friend found her, rescued her, and brought her to medical care.
Shortly after her seizures returned, Lisa was re-started on anti-epileptic medication. Although she had improving control of seizures, she noticed extreme fatigue and significant difficulty focusing on her school work. Her art work suffered enough that she had to change majors. Lisa became a graphic design major at UW-Stout and hoped that starting over at a new campus may give her a reprieve from epilepsy as well.
Lisa continued to have a combination of complex partial and intermittent grand mal seizures. She has tried a variety of medication combinations, each with their own list of side effects and benefits. In 2010, she had surgery to remove the portion of her left temporal lobe that was the focus of her seizures. In Lisa’s words, “I haven’t had any big seizures since the surgery, but I have a ton more auras so I’m on more medication than before. I don’t know which is worse.”
Despite her obstacles, Lisa is now working successfully part-time as a graphic design artist and has learned how to predict the patterns when her seizures are most likely to appear. She has learned how to live with epilepsy, but still feels the stigma from coworkers, employers, and friends who don’t understand the disease. Lisa recounts a time when she had a seizure in on the way to a choir concert while she and other choir members were crowded into a taxi. After she woke up in the hospital from her grand mal seizure, none of the choir members treated her the same again.
Lisa is excited to join our efforts to raise awareness and decrease the stigma associated with epilepsy. Even our friend in the coffee shop was searching to understand how his misconceptions could align with the normal-appearing women sitting 2 feet from his table. The more we talk, the more we understand. Please pass it on.