A Toronto writer’s experience on the TTC last week with a woman living with epilepsy is the topic of a thread on Twitter that is going viral.
“I’d like to tell you a story about something that happened last night, in the hopes that I can process my feelings around it,” she begins.
Erynn Brook says she “met a girl on the train” on her way home from work.
As she approached her stop, the young woman addressed her.
“I noticed she was holding a laminated sheet of paper out… At the top, it said ‘my seizure plan.’ I blinked at it then looked up at her.”
Brook asked the woman if she was having a seizure.
She replied, no, but that she was about to.
“She looked down at the monitor on her finger. ‘Can you sit with me until your stop?’ she asked,” Brook tweets.
A three-minute seizure followed, but not before the 18-year-old woman “moved her purse out of the way and folded her scarf in a place to catch her head as she slumped over.”
Brook describes the seizure plan as “an anchor.”
Mackenzie Muldoon, of Epilepsy Toronto, notes, “the more the general public can be aware the more comfort we can offer those people who have a pretty big challenge already.”
Muldoon says having seizures can be quite common for people living with epilepsy.
“For a lot of people with epilepsy, they don’t want to be rushed to emergency. It’s not an emergency to them, it’s part of their life,” she said. “If they’ve got the signals, like an aura or some kind of tingling or something that tells them, ‘hey, I’m about to have a seizure,’ then they’re able to pass this on to someone and give them a warning.”
Angini Mohammed lives with epilepsy and while she does not carry a card herself, she does see the merit in it.
“Having a card really clarifies things,” Mohammed said. “What can you do to help if that circumstance should arise, you know just be there for the person, they’re just there with everybody else, we’re all there just carrying along as normal.”
Brook missed her stop but chose to ride the subway with the young woman, eventually accompanying her all the way home.
“She gets these seizures 1-4 times a day, and each episode lasts 10-60mins. Just think about that for a second. Think about being randomly completely vulnerable multiple times a day, and this is just… every day,” Brook tweeted.
Brook tells Global News she hopes others learn from her experience that “listening, truly listening, is the most important thing.”
She says people should turn their “feelings into actions.”
“I think people often have the impulse to do or say something but end up talking themselves out of it. That first step, first word, first eye contact is so important.”
Brook’s thread on Twitter is garnering a lot of attention and raising awareness.
“Both women in the story were very courageous and brave and also human,” Muldoon said.
“I think it’s something we can all relate to, taking that little bit of extra time, the fear that you might feel but also knowing that it’s ok, and the courage it takes to go on and live your life and not let epilepsy and seizures stop you.”