To raise awareness, we spoke to Heather Johnson who’s battled with epilepsy for most of her life. Here in this exclusive interview she tells us how the condition hasn’t stopped her from conquering her goals.
My Figure Skating Dreams
Heather, 26, from Eau Claire, Wisconsin, US, was diagnosed with epilepsy at the age of 12. Like any young girl heading into her teens, Heather had lots of hopes and dreams – most of which involved spending time at her local ice rink – Hobbs Municipal Ice Centre.
“I started ice skating when I was four. As a family when we’d watch my older brother play ice hockey I was always staring at the other sheet of ice watching the figure skaters.
“From that day forward most of my spare time was spent on the ice. I love showing everyone how much I enjoy skating, ” says Heather.
Being Diagnosed with Epilepsy Changed Everything
As an aspiring ice skater and straight A student, Heather was reading aloud in the classroom when she got stuck on a word. The next thing she remembers is waking up on the classroom floor surrounded by teaching staff.
After various medical tests it was clear what had happened, Heather had a seizure and received a diagnosis that would change her life – she had epilepsy.
“Until that day I had never even heard of epilepsy. My whole life revolved around skating, the rink was where I felt most comfortable, so my main concern was if I could still compete.”
At first she was advised to wear a helmet when she skated, but the idea was soon dismissed when it became clear this would affect her balance on the ice.
“My coach took seizure first aid classes, but to this day I’ve never had a seizure on the ice. I think this is mainly because skating is a stress reliever for me.”
Living with epilepsy or any chronic condition can be stressful in itself. Heather describes the ice as her sanctuary. Any strain she does experience through competing is superficial and nothing like the stresses of everyday life.
Skating with Epilepsy Can be Challenging
Before she was diagnosed, Heather was already performing double jumps. As she continued her programme she found strength a big issue and was often tired.
“The medication I was on also made me gain weight, which affected my balance, but didn’t stop me. One major set−back is injuries that have occurred from seizures over the years.”
Heather was always fearless when it came to jumps. Nicknamed the jumping bean, she once landed double lutz – a well−known advanced figure skating move.
“I was close to performing double axels and triple salchows, but had to cut down on competing because of a shoulder injury from a combination of skating and the seizures.”
Persistence and Determination
“Coaching is my livelihood now. I love seeing the excitement on my skaters’ faces when they complete something successfully. Even when I have a full−time job, I’ll still continue coaching.”
Heather has performed in a number of ice shows – her greatest achievement was when she landed all her jumps in a performance, despite having just had shoulder surgery.
Her incredible achievements have also led Heather to be featured in the book Skating Forward: Sixteen Amazing Young Women Celebrating Life on Ice written by Joanne Vassallo Jamrosz. The book follows the journeys of young women who don’t let any physical or personal limitations stop them from taking part in the sport they love.
Stay Safe and Have Fun
Heather encourages everyone to try their hand at ice skating, whether it’s a visit to your local outdoor rink at Christmas or joining a learn−to−skate program.
“Go for it. I teach kids of all abilities every week. It’s a good outlet for everyday stress. You can always wear a helmet when first starting. I have kids who wear them all the time. You’ve got nothing to lose by giving it a go.”
“As long as your coach is aware of your medical condition, the sport does not discriminate, ” says Heather.
She also wears an epilepsy medical ID bracelet and advises others to do the same.
“I make sure I wear or keep my ID bracelet with me, particularly when travelling or going somewhere new.
“If someone is having a seizure, I always look for an epilepsy ID bracelet, that way you can follow the instructions or call the emergency contact number,” says Heather.
More Awareness About Epilepsy Needed
Heather believes more awareness about epilepsy is needed and tries to educate as many people as she can.
“My motto is that seizure first−aid should be just as important as CPR. A heart attack can lead to a seizure, so can someone hitting their head, or a diabetic not having enough sugar or too much sugar. So many things can contribute to someone having a seizure. If no one around knows what to do, then the person’s life becomes more at risk.
“I would hope that if I were to have a seizure walking down the street, people around would know what to do. Unfortunately, I do not feel that safe yet.”
Find out how you can get involved and raise awareness as part of National Epilepsy Awareness Week here.
If you have any concerns about epilepsy please seek advice from your GP.