Seizures Unscripted
Share Your Story. Shape Our History.
Be part of the world’s only community-led archive of life with seizures.
The Seizures Unscripted Project is collecting first-hand stories—told by people like you—that go beyond medical charts and prescriptions to capture the real, everyday experience of living with seizures.
Doctors can define seizures. Medications can attempt to manage them. But only you can say what it feels like, looks like, and means in the flow of daily life.
This archive will be a living resource—accessible, and authentic. Built by the community, for the community, and you can add your voice, on your own terms!
sWho are we? We are a six-member team of scholars, advocates, and artists with our own very real experiences of epilepsy.
Help us help our community.
You can participate if you are:
- currently living in Canada or the United States.
- 18 years of age and older
- diagnosed with active epilepsy (meaning you’ve had a seizure within the last five years) as an adult
Share your experience with us. Our community doesn’t have anything like this, and we want to hear from you.
Who are we? We are a six-member team of scholars, advocates, and artists with our own very real experiences of epilepsy.
What’s your story?
Your participation Involves:
- A 1-3 hour interview, scheduled at your convenience. (You can say as much as you want, and you can say when you’re done.)
- A chance to see the questions in advance and review your transcript afterward (but you don’t have to prepare anything).
- With your permission, your audio recording and transcript may become part of an online archive.
- Your story may also inform academic articles, teaching tools, presentations, and publications that raise awareness and expand understanding.
Modest compensation is provided in thanks and respect for your time and contribution.
Our Stories Connect Us
“I’m lending my voice to this project because so few of us speak out. Oral histories preserve stories that may otherwise be lost — offering future generations insight into what it truly meant to live with epilepsy. Projects like StoryCorps and Disability Visibility Project have shown how powerful such archives can be for helping listeners understand epilepsy beyond stereotypes and fear.”
Alisa Kennedy Jones
Author of Gotham Girl, Interrupted : My Misadventures in Motherhood, Love, and Epilepsy
Watch team member Alisa Kennedy Jones’ uncut interview with Eleanor Anstruther to get a slice of her story.
