Step by step (Epilepsy Today, March 2020)

Briar Nolet found a passion and a career in dance. But it all hung in the balance when her seizures began. She speaks exclusively with Epilepsy Today about her journey.

Briar Nolet is standing on the stage alone, poised and ready. She’s about to perform on World of Dance, a competitive dance TV show based in the US that’s watched by millions. The lights fade to black, and the cheers of hundreds of audience members quieten to a whisper.
 
Golden spotlights illuminate her as the Canadian suddenly erupts into an energetic dance routine to the beat of Celine Dion’s Out of Ashes. Her emotional performance wows the audience as she tumbles and pirouettes through the air seamlessly and effortlessly. Each spirited flip and trick makes the crowd go wild with louder and louder cheers and applause.
 
It’s a routine that’s not just technically excellent, but also packed with raw emotion, as Briar reveals her dance was inspired by five years of living with epilepsy. The 21-year-old trained in competitive gymnastics from an early age, having been inspired by her father, a former Olympic gymnast.
 
However, Briar started having back problems after just a few years and was encouraged by her dad to try other sports. She decided that dance would become her new pursuit, and began lessons when she was seven years old.
 
“Since I can remember dance has been the biggest part of my life,” she said. “I would practice from 2pm until 10pm at night. I lived for those days, dancing and learning new tricks and challenging myself, it was the best.”
 
She discovered she had a natural talent for dance – being able to learn the routines quickly became like second nature to her. Dancing was also an escape to refresh and reset her mind.
 
“It takes me away, balances me and puts me in this amazing state of mind.” Briar knew she had found her calling.
 
However, at the age of 16, she started showing symptoms of epilepsy, which began plaguing her recitals. At a dance convention during a class, she started having jerks, making her forget specific moves or lose her timing.
 
“In the middle of it I would almost trip out, like a having a blackout without the black. I would laugh it off and keep going – I knew something was weird, but I didn’t think anything of it.”
 
Briar’s symptoms often meant she couldn’t learn her dance routines as quickly as she once did, which puzzled both her teachers and her parents. Then one day, she found herself running late for a hip-hop class. She snuck to the back of the room to try and catch up, where the blanks returned once again, and Briar struggled to focus on the instructor.
 
During the group routine, she suddenly forgot all her choreography and her mind went into a blur. She was having her first tonic-clonic seizure.
 
“My right hand started to shake, and I fell to the floor – I think I passed out for about 10 seconds.”
 
Briar woke up on the dance studio floor, surrounded by her worried teacher and fellow students. She was taken to the hospital and was referred to a paediatric neurologist. She had tests done but everything came back clear – she was told she had a suspected concussion.
 
After this, the seizures kept coming back and she was having them every couple of months.
 
“They were triggered while was learning choreography – I never had a seizure outside a dance studio.”
 
This was a challenging experience for Briar, who didn’t want to give up dancing because of her seizures. She danced for up to 40 hours a week, so it was a huge part of her life.
 
She’d also recently been given a starring role on Canadian teen TV series The Next Step, which is broadcast in the UK on CBBC. It follows the life and times of a dance group as they compete in dance tournaments and deal with drama on and off the stage. But with her seizures, her career as a dancer and actress was potentially in jeopardy.
 
“It was hard for me because I love to push through things. I’d thought maybe it was some kind of anxiety that was causing the seizures, because it was only happening at the dance studio. So I was thinking it was something that I could eventually control.”
 
Her reluctance to take a break from dance was tough on her family.
 
“It was frustrating to see how much of a toll it took on them. My mum had still never seen me have a seizure, and she was confused as to why they kept happening. My family just wanted me to stop dancing to figure it out. But I was saying no, I’ll keep going at my own pace.”
 
Briar later started seeing a psychologist to see if her dancing really did bring on stress and anxiety. But she recognised something was still off, as she knew she wasn’t one to get stressed, let alone be stressed enough to have a seizure.
 
She decided to keep dancing, and the seizures worsened over time, getting longer and occurring more frequently. “They used to appear when I was learning quick dance styles, then they crept in when I was learning contemporary dance, which is a lot slower.”
 
The seizures also started to affect her education, as the jerks would appear if she typed or wrote quickly. When she was 18, Briar was referred to another neurologist in Toronto who gave her an EEG test. Again, the test revealed nothing.
 
The specialist then arranged for her to have a three-day EEG test at home, which finally revealed a diagnosis of epilepsy. It was a relief for Briar, who was finally starting to get answers. She also had a big choice to make – what medication to go on.
 
She also decided to take a break from dancing for three months to give her body the rest it needed. After then, it was time to go back to the studio and face the music. As dance was the one activity that triggered her seizures, Briar knew she had to find out if the drugs were working.
 
“I started back slowly, getting back into doing slower routines and making sure I was okay, then building from there to faster hip hop dances. From then on I got more comfortable as I knew I wasn’t having any of the blackouts.” The medicine was doing its job, and Briar was delighted to be able to keep her dancing shoes on.
 
Her journey with epilepsy was something she wanted to draw from for her emotional routine for World of Dance. She’d entered the competition a year after becoming seizure-free.
 
“Going on to the show I knew I wanted to do a dance about epilepsy, but wanted to wait for the perfect song, which I found after I got through the first round.”
Before her routine, she reflected on how far she’d come – the jerks, the blanks, the tonic-clonic seizures, all in the dance studio. And as a dancer, she would usually focus on perfecting her moves at a technical level. For this performance, she let go and danced for herself. This time, nothing was holding her back.
 
“That dance was the first time I really dug deep and expressed a story that meant something really special to me.”
 
Briar has now been seizure-free for two years. Thanks to her performance and her speaking about her epilepsy, her condition has opened her eyes to those living with epilepsy.
 
“I get lots of great feedback and messages all the time from people with epilepsy, asking for advice or sharing their story with me. I love reading about them because I obviously wasn’t familiar with the epilepsy community before any of this happened. Now one of the most important things for me is to stay involved and do what I can.”
 
For Briar, she counts herself among the lucky ones, being able to come back to do the thing she loves and forge a career with it.
 
“I’ve always been grateful for dance, but I feel like when you go through something so traumatic it definitely makes you even more grateful for it. Being able to dance again was all I ever asked for when I was going through it all. I never take it for granted, as I know of a lot of people with epilepsy can’t find the medication that works for them.”
 
Briar has recently completed a global dance tour with The Next Step cast. She spoke about her love of dancing on stage and being able to see the reaction of fans.
 
“It’s incredible. It’s pretty crazy looking out into the audience, hearing so many voices and seeing so many people. I get so much adrenaline and want to give them the best show possible because that’s what they deserve. It’s a crazy feeling.”
 
Touring around the world took her thousands of miles from home. But Briar found she had another family she could count on to look out for her – her Next Step cast mates.
 
“They’ve been more than I could ever ask – my parents trust them so they know I’m in good hands. Jordan Clark, who plays Giselle, was there for six of my seizures and she knows exactly what to do, how to calm me down and was there when I woke up.”
 
Reflecting on her own experiences with epilepsy, Briar hinted that she would have probably done things differently looking back.
 
“In my case, it was hard because I wanted to dance all the time.”
Lastly, she shares a message for those going through what she has.
 
“Obviously your health is first, so stay safe if you know what’s triggering your seizures. Taking a step back for a second is only going to drive you forward, rather than pushing yourself too hard and having to take five steps back later. Have hope, believe in yourself and know that everything’s going to be okay.”