I have known Christine for what feels like a long time. Our children, who are now eight years old, used to attend preschool together. I saw Christine at various birthday parties, classroom celebrations, and milestone events over the course of three years when my son and her daughter spent their days at the bright, angular school with halls filled with the music of children that buzzed with laughter and joy.
Even though I’ve had countless conversations with Christine at parties and preschool events, it wasn’t until I posted the first entry to One In Twenty Six revealing “My Story” that I heard about her history of seizures. Christine posted a comment on the blog and wrote, “. . .while I have not had a seizure in over 15 years, my middle-, high school, and early college years were plagued by them. Monitoring sleep, food intake, and stress levels are just second nature now, but auras are always scary reminders that there’s a sleeping electrical storm that could break at any time.” Christine states that the week she saw the post, she was drawn to reading the blog because she recently had an interaction with her colleagues at the University of Wisconsin, where she teaches technical writing.
After hearing a colleague recount a story where he suddenly lost consciousness and fell off his bicycle, Christine suggested that he should be evaluated for possible seizures. When the colleague scoffed, Christine pressed on, adding that she had an intimate knowledge of how unpredictable and variable seizures can be, since she had lived with epilepsy for many of her adolescent and adult years.
Christine shared her story with me while we had breakfast on a grey Monday morning that promised only more cold, slush, and snow. “After I told the group about my history of epilepsy, the room suddenly became silent,” Christine remembered, the irritation visible in the smoldering fire of her dilating pupil. “No one knew what to say. The stigma associated with seizures is still very much there,” she said. ” Something’s got to change.”
Christine’s journey with epilepsy began when she was an active middle school student at a parochial school in northern Michigan. Never one to be idle, she was involved in a myriad activities and pushed her body to the limit. Christine first noticed events where she felt an overwhelming sense of sleepiness that she couldn’t shake even if she was able to get adequate rest. Then she started to notice paroxysms of involuntary movement of her right hand, evidenced by sudden streaks of irregular writing across her papers at school where her hand jerked out of voluntary control and was suddenly guided by the brewing electrical currents within. Eventually, when Christine was working her hardest to help prepare for the middle school graduation ceremony, she succumbed to a grand mal seizure. Her diagnosis of epilepsy ensued and she began treatment with Tegretol.
Christine reports that once she started and increased the dose of her antiepileptic medication, she went from being a straight-A student to “sleeping through a year of high school.” She was no longer able to participate in a variety of activities because the medication side-effects were too great. Her grades suffered significantly as well.
After muddling through a sleepy 18 months on Tegretol, Christine was switched to Depakote, which allowed for fewer side effects and better seizure control. She noticed that she had to exercise almost all the time to avoid gaining weight while taking Depakote. Early in the initiation of Depakote therapy, Christine was warned by her physician that while she was on antiepileptic medication, the risks of potential birth defects would likely preclude her from ever having children. Too young to worry about it too much at the time, Christine took her medication every morning with hope in her heart that her seizures would one day be a part of the past.
In some ways, Christine got her wish. When she went years without seizures or auras in college, she talked to her neurologist about weaning off Depakote. She was able to become free of medications before she became pregnant and delivered her first child. Emmy was perfect, with sandy blond hair, chocolate brown eyes and an expressive smile that could light up the darkest room. Her daughter’s life seemed unmarred by her mother’s history of seizures.
Then when Emmy was three, Christine and Emmy were walking out of the library together one spring afternoon. They were smiling at the warming sun and looking forward to the day they would enjoy together. Suddenly, Emmy’s hand slipped out of Christine’s hand. Christine turned around and found her daughter spread out, quaking, unconscious, and helpless on the sidewalk. Knowing that she needed help, Christine had no choice but to leave her daughter alone for a moment while she ran inside to call for an ambulance.
Emmy’s seizure was not associated with a fever or an illness or any of the typical culprits that may lead to benign seizures in children. In discussion with Emmy’s physicians about use of possible antiepileptic medications to prevent future seizures, Christine states that she was “appalled to find that many of medications that we use in children today are very same with the debilitating side effects that were used for me twenty years ago.” Currently, Emmy is not on any medications and is doing well, but Christine reports she lives in fear of the day that things may change for both of them.
Christine describes her experience as having a “brush with epilepsy” and states that she has been fortunate to not have seizures and medications affect her everyday life. Still, while the grey changed to silver outside on a Wisconsin Monday morning, I could see slivers of how a history of seizures and years of mind-numbing medication can haunt you like a ghost forever. Christine admits that she still monitors her sleep and stress levels diligently. While she used to be “on the path where she needed to be in control of everything,” now she has learned to let things slide. She also admits that she dreads the hormonal changes in life more than most women. Where puberty and menopause are headaches to some, they may mean resurgence of seizures to women like Christine and Emmy.
Christine looks forward to the day when she can talk about epilepsy in a room full of colleagues and not be met with awkward silence. The more we talk, the more we understand. Please pass it on.