In the UK, Epilepsy Awareness Week takes place every year in the third week of May. I originally had grand plans about running very far and doing something fun to not just raise awareness, but to increase the representation of epilepsy in the media. Instead, this week has crept up on me - and most of us from the look of it! But I am still determined to use this time to keep up the representation of epilepsy in sports, adventure and travel.
This week, I will be doing the first ever Insta Takeovers on @SYAdventurers! I'm looking forward to handing over the reins to some great UK based advocates who are living with epilepsy and seizing their own adventures in different ways.
Here's a closer look and links to some of their work:
Cath Shanks (a.k.a. @specialeptic)
On Tuesday 19th, the reins go to Cath Shanks, a skate coach who was diagnosed with temporal lobe epilepsy in 2010.
Reasons to follow her on Tuesday: I've only discovered Cath recently, and her account @specialeptic is still new. But the account is a mix of great fun and heart-breakingly honest:
"SOME DAYS.... some days are harder than others. some days are that little bit darker. some days it’s not even the seizures that are the problem. some days I think I’d rather have seizures than take meds. some days it’s just a little bit too much to cope with. some days I can pull myself out of the rut, some days I can’t. some days Epilepsy sucks WAY MORE than others. some days I just wish I had a different brain. some days, like today."
Cath has also been learning to slackline during lockdown. Which is just so cool. You can see some of her progress on her YouTube channel.
I'll be doing a Live with Cath at 6pm on the 19th, to talk about her lockdown life and what adventure means to her.
Derrick Kay (a.k.a. @derrickkayuk)
Wednesday 20th, we'll hear from Derrick Kay, Video Creator, Seizure Survivor
Filmmaker & Youtuber.
Reasons to follow him on Wednesday:
Derrick is great to watch! He's an Epilepsy Action media volunteer and has been on
BBC, Sky News, London Live, Chanel Five and much more. His YouTube channel started as a fitness story, but he started talking about his personal life, including the epilepsy he was diagnosed with when he was 7 years old. It's very honest, with recent videos going into more detail on lockdown, mental health and more.
Expect fun videos, fitness, football and maybe some travel throwbacks! There will be a Live at 6pm as well.
Arabella (a.k.a. @seizeyourdayorg)
Thursday 21st is a chance to hear from Arabella, the founder of a blog called Seize Your Day.
Reasons to follow Arabella on Thursday:
A triathlete, a lover of the outdoors and often planning her next adventure, Arabella shares many of my values! Follow her for some uplifting quotes, some inspiration and some encouragement to exercise.
"In some ways, seizures are like thunderstorms. They are short bursts of electricity which can cause destruction. But as a result of the so-called thunderstorms, I have found NEW CHARACTERISTICS of myself that I never knew existed."
She has also hiked the Camino de Santiago, and even did the same Norte route as me, so expect our chat at 6pm to be focused on food and sore feet!