Imagine for a second you had to tell a stranger about your epilepsy. Actually, not one person. Maybe hundreds of strangers. And not one by one. All at once. Hundreds of people are looking at you and you are centre-stage telling them about your epilepsy.
That probably sounds daunting to most of us, even if we are quite comfortable talking about our epilepsy. But one woman is taking to the stage and doing just that. She is telling her story, shrouded in light-heartedness and humour, of growing up with epilepsy.
Maisie Adam is 24 and lives in Brighton, where she moved last year from her home in Pannal, North Yorkshire. Over the last year-and-a-half, she has been working as a stand-up comedian.
“I did my first gig in October 2016 in Ilkley as part of my local fringe festival,” she explained. “I always loved comedy but it wasn’t until after I left university that I thought about pursuing stand-up comedy.
“I trained to be an actor and always thought that’s what I wanted to be, but I always got the comedy roles so I knew I had a thing for it. When I saw that Ilkley Fringe was asking for people to be part of it, I thought ‘I guess I’ll give it a go’ and I applied.
“I was given a slot, and it went really well! I was hooked on stand-up after that.”
As it turned out, stand-up comedy really suited Maisie. Last year, she won So You Think You’re Funny, an annual stand-up comedy competition for new acts. The final was held at the Edinburgh Festival Fringe in 2017 in front of an audience of over 300 people.
“It was the scariest moment of my life!” Maisie said. “I’d never performed in front of that many people before, and I couldn’t believe I’d made it to the final. I know it’s clichéd to say but I genuinely didn’t expect to win.”
Maisie’s prize-winning material focused on things like the broad northern accent of her French teacher at school and her family at Christmas. But her upcoming tour has a different angle. It is called Vague and in it, she talks about her experiences growing up with epilepsy.
‘The same experiences as my friends’
Maisie has juvenile myoclonic epilepsy (JME). “I’ve had it for 10 years. It was initially diagnosed as just absence seizures, but then soon changed to a diagnosis of JME.
“When it first started, it was just the absence seizures. I was diagnosed when I was about 14, but my parents had been noticing the absence seizures for a while beforehand and just not known what it was. I think they thought I was just spacing out of conversations occasionally. Then my mum’s friend – who is a nurse – saw one and told us to book an appointment with a neurologist.”
In her teens, Maisie also experienced myoclonic seizures and tonic-clonic seizures. She said the myoclonic seizures were very frustrating, getting in the way of things like getting ready in the morning. However, she said the tonic-clonic seizures were really scary, both for her waking up in an ambulance, and her friends who were with her when it happened.
Aside from the seizures, getting diagnosed with epilepsy had an impact on Maisie trying to navigate her teenage years. “Getting diagnosed as a teenager was hard, and I talk about this a lot in my show.
“It was mainly difficult because during those teen years, I just wanted to have all the same experiences that my friends were having. I was really worried having epilepsy would pose a threat to that.
“The lack of understanding around epilepsy really frustrated me. For example, everyone assumed it was to do with strobe lighting and thought the only seizures were ‘foaming at the mouth’.”
‘Helped me be a bit more open’
Given that speaking in front of crowds hasn’t fazed Maisie so far, it’s easy to assume she is very comfortable and confident about her epilepsy. But she says otherwise:
“In all honesty, I haven’t always been open about my epilepsy. After my first tonic-clonic seizure, I was so taken aback by it! My experience of ‘having epilepsy’ up to that point had just been absence seizures which were totally controlled by medication. So, I was hesitant to acknowledge it myself, let alone tell anyone else.
“I’ve always been very guarded about telling someone I was dating that I had epilepsy, too. I was always scared they’d feel like they had a duty of care or something! It’s horrible to feel like that, but for me it’s true.”
So, what made Maisie decide to talk about her experiences with epilepsy in her new show?
“I think it’s something different, and certainly not something that just anyone can talk about. I decided to do it because I love the nostalgic side of my show.
“It’s things like talking about certain dance tunes of their time or little niche references from your first night out. Except that I could add my own unique perspective with my experiences of doing all those things with epilepsy.
“I honestly think it’s helped me be a bit more open with my own epilepsy.
“I would just like the show to help people understand that epilepsy is not one thing. It’s got lots of variations and forms and presents itself to different people in different ways.”
Maisie will be performing all over in the next few months. She is doing regular gigs around London and Brighton, as well as Just For Laughs Festival in Montreal.
She will also be performing her show Vague at the Edinburgh Festival Fringe 2018 at the Gilded Balloon Teviot in August. You can see the show between 1-27 August at 4:30pm.
Look out for Maisie’s full story in the September 2018 issue of Epilepsy Today magazine!
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