Barbara Kalinoski takes charge of things. She’s been chair of the school board, President of the Laurentian Lakes Chapter of the North Country Trail Association, Director of the Northwest Regional Library, and President of the Minnesota Library Association.
But when the oldest of Barbara’s four children began having seizures in college in 2005, Barbara couldn’t exactly take charge. Stacia was a legal adult who could make her own medical decisions. Though Barbara came to medical appointments, she wasn’t involved — not the way she would have been, had her daughter been a few years younger.
I need to know
“Being a parent of an adult child with epilepsy is a whole different ballgame,” said Barbara. “I didn’t receive any information from the doctors. I had to find it on my own.”
If anyone could find it, Barbara could; she’d been in library administration for decades, and information was her lifeblood. But the internet in 2005 was a mere shadow of what it is today. Barbara and her husband Greg were frustrated by what they found — or rather, what they didn’t find.
“The information was really difficult to find, and what I found wasn’t helpful at all,” Barbara recalled.
Stacia was in college six hours from home, but Barbara drove to each appointment to offer support and gather any information she could. Stacia wasn’t officially diagnosed with epilepsy, but she was prescribed an anti-epileptic medication. Barbara remembers that the side effects were such that Stacia tended not to take it regularly; this worried her. But she couldn’t force her daughter to take her medicine as directed.
Years later, Stacia called her parents with a formal diagnosis: mesial temporal sclerosis. This didn’t surprise Barbara; since Stacia’s first seizure, Barbara was almost sure that her daughter had epilepsy. Barbara had some experience with epilepsy; she knew someone who had the condition, and had witnessed a few seizures.
Barbara also knew about some of the challenges her acquaintance faced every day, both in the workplace and in life in general. So when Barbara imagined what her daughter’s future might be like, some of it frightened her.