When Kyle Adamkiewicz, 33, a resident of Wall, New Jersey, first painted seashells with the simple message, “Find a cure for epilepsy,” and left them along benches on the nearby boardwalk, he couldn’t have imagined the response. Inspired by a local Facebook group, Jersey Shore Shells, which encourages people to paint seashells and hide them for others to discover, he decided to use shells as a canvas to raise epilepsy awareness. “People who found them were writing so many positive things in the group about the epilepsy shells, that it made me keep making more,” he says.
That was two years ago. Since then, Adamkiewicz, who’s been living with the condition since he was 6 years old, started his own Facebook group, Epilepsy Shells Worldwide. He estimates that, so far, he has painted more than 1,100 shells. On the back of each shell, he adheres a sticker featuring a QR code that links to facts about epilepsy and first aid tips to help a person having a seizure. His mom, Laurie, who preps each shell by running it through the dishwasher, says, “We didn’t want people to just find the shell—we wanted the shell to have an impact.”
Speaking from his family’s living room and surrounded by paint pens and shells, Adamkiewicz says he loves seeing that people have painted their own and left them for others to find, whether on a playground or a table at an outdoor cafe. Folks have taken the shells on their travels, leaving them for others to find everywhere from Paris, France, to Sydney, Australia. One Facebook group member who lives in South Africa said she didn’t have shells nearby, so he mailed her some. He also encourages painting rocks.
“The ultimate goal is to make people aware of epilepsy, not to be afraid, and to know what to do if they encounter someone having a seizure—and not just walk away.”
When he was young and newly diagnosed, Laurie tucked notes in the mailboxes of neighbors to inform them about seizures. The shell project aims to do the same. “The ultimate goal is to make people aware of epilepsy, not to be afraid, and to know what to do if they encounter someone having a seizure—and not just walk away,” she says.
The shells have brought something else unexpected to the family’s life, which is community, among hundreds of other families around the world touched by epilepsy. Laurie notes that there are many support groups for young children, but that epilepsy programs for young adults are few and far between. Adamkiewicz, who has had six brain surgeries, can’t drive, and says he must be accompanied by his brother or parents anywhere he goes. This year, he will be getting an implantation device called responsive neurostimulation (RNS).
Expanding on the positive response to their Facebook group, which now has over 800 members, the family has held shell painting parties. For Adamkiewicz, every person who paints a shell and places it for others to find is making a difference. Sometimes those who meet him ask to take a picture with the artist who inspired them to paint their own shells.