On a warm spring night in 2015, an audience in a Minneapolis school auditorium waited excitedly for the curtain to rise on opening night for my middle school's annual spring play. There was a delay, though, and then a last-minute casting change. One of the show's leads would not be performing that night. Instead, a brave cast member would step up and fill the role by reading lines directly from the script.
What the audience had not realized was that as they waited for the lights to dim and the music to rise, a student in the cast experienced a seizure and was unable to go on stage. Later that same night, a second student would have a seizure. That student was me.
At the time, I was a 7th grader, already familiar with seizures. I was diagnosed with epilepsy at age two. I remember coming out of my seizure to a chaotic scene, with my friends and classmates helping, doing exactly what I had proactively taught them.
I was later told that when my seizure set in, the students nearby all reacted appropriately, while rattled adults watched, not sure what to do.
My parents, who had been waiting to meet me, came into the dressing room and found me in the middle of a seizure, with some friends counting the seconds aloud to time its duration, while other friends shielded me from the fluorescent lighting and kept the area clear. It was a traumatic night for many people involved, and the way the adults in the room had been unprepared did not feel right to me.
Epilepsy is a neurological condition of the brain characterized by someone having two or more unprovoked seizures. A seizure is a brief electrical surge in the brain which can cause convulsions, changes in an individual's behavior and/or unconsciousness.
About 3.4 million Americans live with epilepsy. In Minnesota, approximately 7,400 children live with epilepsy and attend one of the state's more than 3,000 public, private or charter schools. Despite the large number of students who have this neurological condition, too many teachers and staff lack the tools and knowledge to appropriately respond to seizures.
This is disheartening. I have always needed to independently build a network of people to help in case I have a seizure at school. It has also been difficult for my parents. They have had to pay special visits to each of my teachers every new school year to educate them on how to handle my seizures and medications — in addition to all the other natural parental worries.
Something needs to change.
Passing the Epilepsy Foundation of Minnesota's Seizure Smart Schools plan would be a great solution. This bipartisan, no-cost legislation would require seizure action plans created in partnership with parents and schools. These plans identify one school employee who is present all day and trained on seizure recognition, response and medication administration. The bill ensures epilepsy training materials are available to all staff, easily fulfilled by the free resources already available from the Epilepsy Foundation of Minnesota.
There is a lot of support for Seizure Smart Schools among Minnesota parents, students with epilepsy and epilepsy advocates. The legislation was also recently included in the state Senate's education omnibus bill — a great first step!
I would love to see Minnesota join the six other states that have already passed this legislation: Kentucky, Indiana, Texas, Illinois, New Jersey and Virginia.
I call on Minnesota legislators to pass Seizure Smart Schools (HF 469/SF 654) so that students living with epilepsy can feel safe and reach their full academic potential and so that parents can sleep a little easier at night.
Olivia Devaraj is a high school senior in Minneapolis.