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.”

Self-driving cars could be a game-changer for people who can’t drive. We explore how safe they are, and how much longer until they’re on our roads.

There’s a car hurtling down a busy motorway in Massachusetts, USA, reaching speeds of up to 60mph. Not an uncommon sight, but there’s just one alarming problem - the driver is asleep at the wheel.

Thankfully, the car doesn’t veer off into the next lane, and doesn’t slam into the car in front. It’s able to automatically speed up and brake in time with traffic.

The car is a Tesla Model 3, one of the newest cars available to buy with the ability to drive itself. The driver and his fellow road users are quite safe.

Driving plans
These and many other cars that will eventually have the capability to self-drive are already on the move on our roads. And they have the potential to not only bring in a new era of productivity in many UK sectors. They could also redefine freedom and independence for those with disabilities and people with epilepsy who cannot drive.

In addition, when we’re able to fully adopt self-driving car technology, it could help cut the huge number of deaths and accidents on our roads. According to road safety charity Brake, in 2017 there were 1,793-road related deaths on Britain’s highways, with a further 24,831 people seriously injured.

The government has announced plans to put driverless cars on UK roads as early as 2021, and advanced testing of self-driving cars is well underway in several cities. By 2035, connected and self-driving cars will be said to be worth £52bn.

Chris Grayling, the UK government’s former Transport Secretary, commented: “Many who can’t currently drive will be able to take to the road. Elderly people or people with disabilities which prevent them from travelling today will discover a new sense of freedom and independence.”

As well as Tesla, big-name car manufacturers such as Lexus, Toyota and Volkswagen are racing to develop their
own self-driving car technology. However, it’s important to note that these cars will be immensely expensive. By carrying the latest in sensor and artificial intelligence technology, these cars will be priced out of the reach of many people for some time.

The future, today?
Fully self-driving cars have the potential to be a game-changer for people with epilepsy who are currently not permitted to drive by the DVLA. Imagine stepping out of your house into your car and being taken to work, school or the shops without you having to lift a finger.

You’ll be able to read, sleep, watch TV and even work, as your car gets you to your destination. In theory, one day you’ll be delivered to your chosen destination door to door. And then your car should be able to go off by itself, find a parking space and park itself in it.

Today’s cars are able to do much without driver input. They can brake automatically if its sensors detects something, or someone, in front. They can speed up and slow down to keep in traffic and stay within lanes. Some can even read road signs.

These new developments are sure to be exciting, and a great leap forwards in how we’ll travel in the near future. However, it’s important that we manage our expectations with where we’re at with current technology and the law. We also need to be patient of the work that still needs to be done.

Firstly, we need to understand where the current technology’s limits are, and the work that’s needed for fully self-driving cars. With this in mind, the Society of Automotive Engineers created a classification to describe the progress made so far. Experts say that the latest automatic cars on the roads operate at Level 3. Here, the car can largely drive itself but still might need driver actions in some cases. Level 4 is set to happen within the next few years, and could mean it becomes possible for those without a DVLA licence to ‘operate’ a car.

While in the US some states declare it’s not illegal to fall asleep at the wheel of a car on autopilot, things are different in the UK. Drivers must be awake and alert at the wheel, ready to takeover if things ever go wrong.

There’s still lots of testing to be done on UK roads, and that means millions more miles to go before these
systems are proven to work. Until then, cars need a driver, and there are still limitations to this technology that
experts are trying to find ways around. For one, the radar system in these cars can be obscured by bad weather such as snow and heavy rain. That’s why a majority of the testing has taken place in hot and dry places like Arizona and California.

The same radar system can keep up with regular traffic, but can’t quite react quickly enough deal with objects that suddenly appear on the road. Consider if the car is driving at speed and suddenly the car in front changes lanes to avoid an obstacle. Or perhaps someone suddenly walks into the road without warning.

These problems have already contributed to accidents on the road. Last year in March, a self-driving car owned by taxi operator Uber struck and killed a pedestrian during a real-world test. It’s reported to be the first pedestrian fatality involving a self-driving vehicle.

In 2016 in the US, a Tesla car in self-drive mode collided with a white lorry that was turning into its path. The sensors were unable to tell it apart from clouds in the sky, and judged the highway to be clear. It’s clear a lot of work still needs to be done before the age of self-driving cars that take you to your destination door to door.
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Although the automated technology in cars has advanced at a rapid rate, it will be some years before these vehicles are in place and affordable by the general public. This technology could lead to a future where the barrier between having active epilepsy and driving can be safely removed.

Richard Seymour, spokesman at Toyota says: “Fully self-driving vehicles that can operate at all times and in all situations will take time and careful, collaborative efforts to overcome safety and performance challenges. In the next several years, we expect to see Level 4 vehicles, where the automated driving technology can operate in specific areas under specified conditions.”

Last issue, we explored the barriers that people with epilepsy have in finding and holding down a job. Here, we look at three different case studies from people who are juggling epilepsy with their busy working lives.

Daniel
Football performance analyst
Daniel, 29, lives in Acton, London and works as a performance analyst at Watford Football Club. He was seven when he was diagnosed with epilepsy following his first seizure.

“I remember my first seizure clearly – I woke up feeling dizzy, so I went to the kitchen for some water. I managed to get my cup and turn on the tap, then that was it. The next thing I remember was waking up in A&E at St Thomas Hospital.

“It took a few more seizures, brain scans, CT scans and EEGs before I was diagnosed with temporal lobe epilepsy. I was told I had a grey area with dead cells which was the epicentre of my epilepsy.”

Daniel has both focal (focal onset) seizures and secondary generalised (focal to bilateral) tonic-clonic seizures. He takes Tegretol Retard, Gabapentin and Fycompa, though his seizures are not yet under control.

“I used to have three to four seizures a day – now I have one every two or three months. Due to the higher dose of meds I take at night, I have tiredness in the evening and the occasional slurred speech. Sometimes I have a short temper but that is manageable.”

And naturally, Daniel’s diagnosis did have an effect on his friendships and pursuits when he was younger.

“I felt like a normal kid before, but when I was diagnosed, I shied away from doing things like bike rides and swimming. I was going through things that others weren’t.

“But I was also lucky, as I had a great support network, where my family and friends encouraged me to come out
and do things. Also, they were very understanding, where some days I’d feel up for things and other days I wouldn’t. So, they would arrange for another occasion where I’m feeling good which was great for my confidence.”

With this confidence, Daniel had dreams of becoming a professional footballer, but unfortunately his epilepsy made his career choice difficult.

“It was something I was really interested in, but I was having seizures on the field, so I was told to stop. It was devastating.”

But despite this career setback, he soon discovered other ways of staying in the beautiful game.

“My friends and family helped and encouraged me to complete my football coaching qualifications and I started
coaching at a local grassroots team, so I was still involved in football. In 2010 I decided to go to university and study Sports Science and Coaching.”

One of Daniel’s course modules was on Performance analysis, which sparked a passion within him, and he decided to pursue a career in this field. He signed up to extra courses to immerse himself in the subject, and started working freelance for grassroots teams to gain practical experience.

Once he graduated from university, he started contacting football clubs to offer his expertise. Watford FC was the first club to bite, offering Daniel a role as a voluntary intern, and following this he was given a full-time position. He
told the club of his epilepsy, and the organisation was only too willing to help accommodate.

“They have a care plan in place if I have a seizure at work, and I can get a couple of days off or more if needed to recover. I’ll also get checked over by their medical team, which is great. I’m lucky as due to the industry I work in, we have an on-site doctor, so I guess I’m in a safe environment to have a seizure.”

Daniel says he’s always been able to be transparent about his epilepsy for job applications and interviews. “I have to be upfront for my own safety, in case of seizures. In all the jobs I’ve had, they knew about my epilepsy – they were great about it and supported me well with time off to recover if I needed.”

Interestingly, it’s Daniel’s willingness to be frank about his condition which helps employers engage with and de-stigmatise his epilepsy. “I think it’s because I am so open and honest about my epilepsy, it makes it easier to get
the help and support I need. It gave me the confidence to talk about it with my current employers, and I had the chance to educate them.”

Linda
Freelance crotchet artist
Linda lives in Carlisle and runs her own business making and selling crocheted collectibles.

Her epilepsy diagnosis came when she was 14, with her first seizures occurring aged nine. “In between there was a lot of uncertainty whether it was epilepsy or not. They eventually caught it after an emergency four-hour EEG video telemetry session.

"I don’t remember my first seizure, but I remember how scared I was and how I couldn’t understand what was happening to me. Especially as everyone thought I was doing it for attention and would tell me I was upsetting my mum.”

Linda was diagnosed with frontal lobe epilepsy. As well as her epilepsy, Linda has ‘ticks’ such as clapping, clearing her throat repeatedly and moving her neck.

She takes oxcarbazepine twice daily, but her seizures are not under control, and they occur most evenings and sometimes during the day. As a result, Linda is less likely to take part in evening activities due to the risk of seizure. This, along with the lengthy diagnosis process, has taken its toll on Linda’s confidence over the years.

When she was younger, Linda’s mother took her to help at a nursery, and by the time she was 14 she was offered a job during the holidays.

“I just took to it naturally – children don’t judge you like adults and I found I was able to be myself without worry of judgment. I enjoyed being part of their learning experience.”

However, one day the nursery had to close due to funding, and finding subsequent nursery work hasn’t been
easy for Linda.

“I’ve found over the years if I put my condition on the form I don’t get an interview, whereas if I don’t, I do
– it could be a coincidence, but because of this I started leaving it off. Then in the interview I would disclose it so I could explain in person and play it down so as not to cause alarm.”

When she did land a job, she quickly found they weren’t understanding of her epilepsy.

“In one particular role they became frustrated with my hospital appointments – the deputy manager became particularly angry with me about it. They couldn’t understand that my condition fluctuated and the more stress they put on me about my seizures, the worse they became. I ended up leaving because my health was more important to me.”

It’s clear that in many workplaces, Linda has had to fight against the stigma and misconceptions of epilepsy, not just in managers, but fellow colleagues.

“I feel they don’t understand my type of epilepsy – they immediately think of tonic- clonic seizures and panic. I’ve struggled with getting time off for appointments, and when I was going to them in a different city, they didn’t understand why I needed the full day off. They also didn’t appreciate it if I needed to be off following a seizure
during the night. My seizures would often be worse as I’d push myself to go in as I was worried about losing my job.”

After being in and out of part-time work for years, Linda decided enough was enough.

“I decided not to look for jobs anymore. I struggled to fit work around my health and getting my daughter to school – I felt like I was no longer the best parent I felt I could be, and my health was suffering. After my third child I decided to become self-employed so I could work around my epilepsy and my kids.”

Linda now sells her crotchet pieces through a shop, and she’s had a few repeat customers commission her for her work all over the country. And while embracing a freelance lifestyle isn’t without its challenges, Linda enjoys having the flexibility of being her own boss.

“I find the bookkeeping side of it stressful, as maths isn’t my strong point. But I make sure to keep everything I sell documented. Sometimes I also find myself worrying if I’ve had a slower month. After two years of it I’m still getting to grips with marketing my products, but it still feels slow going sometimes. But I enjoy having time to work around my health and family, and turning something I love into a job. I love the fact something I’ve made gives
someone joy!”

Following her experiences in work, she feels that much needs to be done to dispel the myths and educate
employers around supporting people with epilepsy.

“I think there should be more training in regards to different seizures; how they affect someone’s life and the medication and appointments that come with that. Workplaces should have a degree of flexibility when it comes to appointments – it’s not a case of someone avoiding work. There also needs to be less fear around epilepsy. If
you need to have the morning off after a night-time seizure, it might make things difficult for the employer, but it shouldn’t make you unemployable.”

Gemma
Caravan park owner
Gemma lives in Leeds and was 26 when she was diagnosed with epilepsy in 2009.

“On the day of my first seizure, we’d been backpacking around Australia and celebrating the new year. I was going down for lunch in the hotel, and without any warning, the next thing I knew, was waking up with blood all over the floor and two paramedics beside me. At the time they said it was probably down to jetlag or scuba diving and that it was a one-off seizure.”

When Gemma returned to the UK, she felt things still didn’t feel right, but the doctors couldn’t do anything to help without a second seizure. A couple of months later, the seizures returned. She had an MRI and eventually she was diagnosed with epilepsy. At the time, Gemma experienced tonic-clonic seizures along with focal seizures every few days.

“They didn’t find a cause for my epilepsy really – it was either from my scuba diving, an arachnoid cyst that they found when I had a CT scan in Australia, or it just happened. The cyst was also on my temporal lobe, so it affected
my memory.”

For her epilepsy, Gemma takes Lamictal (lamotrigine) and Lyrica (pregabalin), and for now, her seizures are controlled. Gemma wanted to set up her own business, and she saved up by working in a hotel, pub, market stall and caravan parks.

“I’m really into local tourism, which has been part of our family business, so I’ve got the knowledge and the experience.”

It was this passion for tourism that led Gemma to buy her first business in 2014, a caravan park in Bardsey, Leeds. Since then, she’s also made improvements to the site, building a house and further developing the park.

“It’s a lot more stressful owning your own business but a lot more rewarding. I definitely prefer being self-employed. There are benefits, like if I need  time off for appointments.”

However, dealing with customers, long hours, living at work without much time off, plus competition from other caravan parks didn’t make owning a business easy. And the stress only served to make Gemma’s health even worse.

“Shortly after buying the park, I had another seizure and lost my driving licence again. Then I managed to regain it and lost it again for a second time since buying the park. It was virtually impossible to run the business, because there’s no bus route or anything here – I had to use taxis and asked friends and family for lifts.”

Despite this, things are looking up for Gemma’s business, and she’s back to being able to drive.

“I’ve worked on my own up until this point – now the business is well-established and I can afford to take on extra staff.”

She’s now going on two years without a seizure, and she says she’s never been tempted with a regular nine to five job.

“The best thing about being my own boss is that I can work at my own speed. With my memory being so bad, it would be really difficult to get a job.”

She even encourages others with epilepsy to take the plunge in owning their own business.

“Just do it – but maybe have a back-up plan and a good support network to help you out if you need it.”

Editor’s comment
No matter what our career ambitions are, working in a safe and supported environment should be a right, not a privilege. If we’re able to work, it’s important that we are able to find and keep a job that helps us to get the most
out of it.

From the Institute for Employment Studies research, it’s clear that a lot of work still needs to be done to dispel the myths around epilepsy. Many with epilepsy don’t feel comfortable talking about their epilepsy in front of a potential employer.

What doesn’t help is that many employers harbour a lot of fear and applied stigma to epilepsy. It’s a tough job market out there already without employers tossing applications in the bin if an epilepsy condition is disclosed on paper.

A popular option seems to be that people with epilepsy tend to leave their condition off their application form. Once their ‘foot is in the door’, usually at the interview stage, that’s when it’s best to disclose, so they can explain their condition face-to-face.

It’s an understandably nervy situation. However, like interviews themselves, the more times you go through it, the easier it gets.

The recruitment stage is the employer’s chance to see whether you’d be a good fit for their company. However, it’s also your chance to see if a company is a good fit for you. Remember that employers shouldn’t use your epilepsy as a reason not to give you a job, unless they have good reason, for example for health and safety.

Fire your passion
Confucius once said: “Choose a job you love, and you will never have to work a day in your life”. Admittedly, that’s lot easier said than done, but it’s all about discovering a passion that you can turn into a profession. Once you do, that passion is going to burn bright and make you a stand-out candidate in any employer’s eyes.

What did you love doing as a child? What hobbies did you have, before life got in the way? Ask your family and friends for advice. On the other hand, what jobs do you hate doing? Eliminating these from the mix might help you find your calling. You can maximise your chances further.

Do your research, follow experts in your field, and immerse yourself in job sites and job fairs. It takes a lot of energy and motivation, and while many of your applications won’t bear fruit – you only need one successful lead to bite. If you don’t have relevant experience or qualifications, be aware some careers let you start on entry level jobs. You could even volunteer to gain working experience, while apprenticeships let you earn money while learning on the job.

Supporting you
With a very small number of exceptions, there shouldn’t be any job that people with epilepsy can’t do. With this in
mind, Epilepsy Action is working to help educate employers about epilepsy as well as the reasonable adjustments that can be made.

In 2020 we’re planning to launch online tools for employers to support people with epilepsy in the workplace. Don’t forget you can use the “Epilepsy and you” online self-management tool, to help you live better with epilepsy and it includes a section on employment.

Epilepsy Action also works to ensure that people with epilepsy are considered in regulations and policies around work and employment.

You can further explore our guide to finding employment here: www.epilepsy.org.uk/info/employment