A Castlegar woman says she’s very happy to be home from a bike ride of more than 5,000 kilometers across the southern U.S. collecting stories of people with epilepsy.
“The journey’s been wild,” says Kelly Hall of her journey that began Jan. 1 in California and concluded on April 11 in Florida when she dunked her front tire in the Atlantic Ocean. “Tons of ups and downs. I ran into so many amazing people along the way.”
Hall said despite some bike problems and some freezing nights in a tent, “overall it’s been a fantastic experience.”
As the days got longer, she rode from an hour after sunrise until 5 p.m. each day, but in the early going she had to find a campsite by 4:30 each day “or I was in deep trouble.”
She mostly camped and stayed with a series of hosts, only occasionally spending the night in a hotel or AirBNB, so “there were lots of pony tails and dirty days.”
Hall has had epilepsy since she was seven and was inspired to hit the road when she met people who would confide they had epilepsy too but wanted to keep it a secret.
“I didn’t like that they felt they had to hide it and I felt and feel there is stigma about epilepsy. The whole point was to get it out there and quell some fears some people have.
“People hear the word epilepsy and think the worst. But there are so many types of epilepsy that there should be more compassion and people should listen to what’s going on in people’s lives rather than making snap judgements.”
Hall said the best way to learn how different epilepsy can be is simply to talk to people with epilepsy to get their stories and experiences. That’s what she did along the way.
“I heard everything from ‘this doesn’t really bother me that much’ to ‘I can’t swim in a pool’ and people being arrested and going to holding cell because people thought they were on meth. From lives on the line to lives barely being affected.”
She’ll now be editing the video interviews she did.
Hall said she finished just shy of raising a dollar for every one of the 5,429 kilometers she pedaled. The money will benefit the Centre for Epilepsy and Seizure Education in BC and the Defeating Epilepsy Foundation in the US, both organizations that provide services to adults who live with epilepsy.
You can read more about Hall’s trip at https://www.storytellingseizures.org.
