Seize the (Purple) Day

Tom Nesbitt arrives for our meeting cheerfully dressed in his Salvation Army uniform. It’s December, and after we finish, he’ll be heading to a nearby Loblaws to volunteer with the Christmas kettles.

“I love doing the kettles,” he says with a smile. “I love interacting with the people and the fact that my grandparents, my father and my uncle all did kettles. I feel like I’m continuing the tradition.”

In uniform, Tom looks like any other Salvationist, save one important detail—a bright purple cast peeking out of the right sleeve of his tunic, the result of a sports injury.

Purple is the colour of epilepsy awareness—a passion project for Tom, who was diagnosed with epilepsy when he was three years old.

“I want to help people understand what it is and what it’s like, so that the myths and stigmas associated with epilepsy will be broken,” he says.

The purple cast is a small gesture, but it provides an opportunity to have a conversation, to educate people about epilepsy and normalize it so that, as Tom says, they “see the person,” not the condition.

Cause Unknown
Epilepsy is a neurological disorder that manifests itself in the form of seizures. It affects one in 100 Canadians, but in 50 to 60 per cent of cases, including Tom’s, the cause is unknown.

“The doctors have never been able to pinpoint that part of the brain where the seizures are coming from, or what caused me to have it, because no one else in my family has ever had epilepsy,” Tom explains.

As a child, Tom had multiple seizures a day, most of which were tonic-clonic (grand mal)—the type of seizure most commonly associated with epilepsy.

“I spent a lot of time at Sick Kids Hospital in Toronto growing up,” he says. “I was put on many medications, and it was hard spending half of the time at home and the other half in the hospital. But I’ve come a long way because I’m not on as many medications and my seizures have been reduced a lot since I was young.”

Along with medications, Tom has a vagus nerve stimulator, a medical implant that acts as a “pacemaker” for the brain, sending regular, mild pulses of electrical energy to the brain via the vagus nerve in the neck.

“I still have seizures, but now it’s normally when I’m in deep sleep, or coming out of a deep sleep, that it happens,” Tom explains.

The last time Tom had a seizure during the day was in September 2013. “I was with my mom, walking down the street near the condo building where we live,” he remembers. “It was hot and I had a drop seizure.”

“He fell to the ground and fractured his C1 vertebra,” his mother, Judy Nesbitt, adds. “But he was very fortunate; it could have been worse.”

Tom wore a neck brace for five months while the vertebra healed, but he took the experience in stride.

“I didn’t let the collar stop me from doing a five-kilometre walk for Epilepsy Toronto,” Tom says proudly. “They thought I might want to stand on the side and cheer everyone on, but I’d been training with my mom for a long time to do it. Even with the collar, we did it in less than an hour!”

That determination and positive attitude have been characteristic of Tom’s response to his illness throughout his life. A dedicated Toronto Maple Leafs fan, he plays hockey and practises hapkido karate. He’s also an active member of North Toronto Community Church, teaching Sunday school and volunteering with the kettles and more. Tom has even been on two mission trips with The Salvation Army—at a sports camp in England and in New York City following the 9/11 terrorist attacks.

“When he was first diagnosed with epilepsy, our doctor said, ‘He’s better to fall out of a tree and break his arm from a seizure than break his heart by saying he can’t climb the tree,’ ” Judy shares. “And as tough as that is, it’s wonderful advice.”

Education and Advocacy
This month, Tom will temporarily trade his Salvation Army uniform for a purple T-shirt as he participates in Purple Day on March 26, an annual event to raise awareness about epilepsy. It was founded in 2008 by Cassidy Megan, then an eight-year-old girl from Nova Scotia, who wanted to educate her classmates about epilepsy. The idea was picked up by the Epilepsy Association of Nova Scotia and has since become a global event, held in more than 100 countries.

“I think The Salvation Army should get involved with Purple Day because we are a worldwide organization and we have the ability and the resources to reach millions of people,” says Tom. “It’s a fantastic opportunity for the Army to show it doesn’t discriminate, and let people know that if you have epilepsy, it shouldn’t stop you from doing what God has planned for you to do.” He encourages Salvationists to show their support by wearing purple, posting on social media or attending a Purple Day event.

Tom has been involved with advocacy for persons with epilepsy since 2010, when he first attended BuskerFest, a weekend of events organized by Epilepsy Toronto. As well as raising awareness, the festival raises money for the organization, which has been a godsend for Tom, who attends their Friday recreation group and job-finding club.

“Ever since I got involved with Epilepsy Toronto, I’ve grown more confident in wanting to tell my story about what it’s like to live with epilepsy,” Tom shares. “When I was little, I used to think that I did something wrong and this was God’s way of punishing me. But as I got older, I started to think of it more as a blessing because it gives me the opportunity to talk to people about epilepsy.”

Education is crucial as epilepsy is a disorder that’s still widely misunderstood and rarely talked about. Many people would not know how to respond in the event of a seizure (see below), though Tom says that’s beginning to change.

“I was at my cousin’s wedding reception, having a slow dance when I got really warm and had a seizure,” Tom shares. “My dance partner dropped me to the ground and the music stopped. But my cousin came over and said, ‘It’s fine, it’s just my cousin. He’s having a seizure, but his mom’s here, it’s OK. Just put the music back on.’ ”

Overcoming Obstacles
As we wrap up our meeting, Tom gives me a purple bracelet. Printed on one side is the address for Epilepsy Toronto’s website; on the other, three simple words: See the person. It sums up our conversation perfectly.

“I hope that when people see me, whether I’m wearing a purple T-shirt or the Army uniform, they see Tom Nesbitt,” he says, “not only a person of God and a representative of The Salvation Army, but also someone who has overcome a lot of obstacles, and has not let epilepsy define who I am.”

Responding to a Seizure

If someone is having a seizure:

Stay calm. Seizures usually end on their own within seconds or a few minutes.
Create a safe space. Move sharp objects out of the way. If the person falls, place something soft under their head and roll them on their side. If the person wanders, stay by their side and gently steer them away from danger.
Time the seizure. Call 911 if the seizure lasts more than five minutes or if the person has multiple seizures.
Provide reassurance. When the seizure ends, stay with them until complete awareness returns.
Do not restrain the person or put anything in their mouth.

Adapted from Epilepsy Ontario, epilepsyontario.org/about-epilepsy/first-aid.