By Deron Hamel
One goal Epilepsy Ontario aims for through its news program, Voices of Epilepsy, is to highlight people who have not allowed living with a seizure disorder to hold them back from pursuing their dreams and ambitions. So far in 2016, we have seen many of these stories.
In January, we highlighted the story of Brock Welton, a 22-year-old man living with Dravet syndrome, a catastrophic form of intractable epilepsy. Last year Brock joined TOROS, a progressive and inclusive community theatre for young people, which has had a profoundly positive impact on his life.
His mother, Jo-Anne, says Brock was “very quiet” when he began participating with TOROS, but in short time this changed. The other TOROS members empowered Brock, encouraging him to take an active role in the spotlight and to participate in their song and dance numbers.
Eventually Brock thrust himself into the action; he attended rehearsals and began performing on stage, an aura of self-confidence surrounding him. No evidence of the shy young man who once stood at the side of the stage remains.
“Now, you need a hook to get him off the stage,” Jo-Anne chuckles. “He just loves it.”
The confidence Brock exudes today has grown beyond his work with the theatre group, Jo-Anne says.
“I find he is so much more self-driven, and I have had to adjust to this because I was always so used to doing everything for him,” she says. “My role has changed from being someone who is his total caregiver to him telling me what he wants to do with his life, and I am trying to accommodate him.”
Peterborough resident Kerry Jenkins first began having up to 100 absence seizures per day at seven. In August 2000, she had her first tonic-clonic seizure. The seizures progressed to an average of 15 per month. She was diagnosed as having both generalized seizures and temporal-lobe seizures.
For Kerry, like so many others with epilepsy, life has been a road with many obstacles. Her marriage ended because of her condition, which also strained her relationship with one of her children. She lost her driver’s licence because of her epilepsy, which presented transportation challenges for her, as she was living in Lindsay at the time and had to travel more than 40 kilometres to her job in Peterborough every day.
Since a series of successful surgeries that began in 2010, Kerry’s seizures have sharply declined and she no longer suffers from generalized seizures. Given all that she has gone through, her doctors at Toronto Western Hospital have taken to calling her a “walking textbook on epilepsy.”
They have even encouraged her to tell her story.
“I’m used as an example to other patients and family as how much someone can have to go through with epilepsy,” Kerry says. “My (team at Toronto Western Hospital) has encouraged me to write a book about what I have gone through. They have told me that I have the best attitude they have ever seen.”
Last November, Rob Jamieson, a 21-year veteran of the Ontario Provincial Police (OPP), was elected to a two-year term as president and CEO of the union representing 9,200 uniformed officers and civilians working for the police force. He is also living with epilepsy.
His position with the Ontario Provincial Police Association (OPPA) is the result of many years of hard work and support from his family, friends and OPP colleagues. He is also an example of how people living with epilepsy should not let their condition stand in the way of their aspirations. This is the message he wants to send to people living with epilepsy.
“I want that young kid who has epilepsy to read this and be inspired; I want to reduce the stigma (of epilepsy),” says Rob, who has not had a seizure since 2004.
Rob says if asked 10 years ago if he envisioned himself as head of one of the largest police unions in Canada, his answer would have been no. However, he is committed to helping others, so it’s not a complete shock either.
“Did I see myself specifically in this position? No. But did I see a role something like this, or did I see something like this happening through hard work and support? Yeah, anything is possible, as long as I am in that role of helping others,” he says.
Do you have a story to share about overcoming challenges related to epilepsy? If so, we’d like to hear from you. Please contact the newsroom at 1-800-294-0051, ext. 23, to share your story.
If you have feedback on this story, or have a story of your own that you would like to share, please contact the newsroom at 1-800-294-0051, ext. 23, or e-mail deron(at)axiomnews.com. You can also leave a comment below.