Living with epilepsy: Believe in yourself and never give up
Grit, determination, and resilience are all words that spring to mind when you talk to 34-year-old Shaun Kehoe.
Despite a lifetime of serious health problems, including epilepsy, he has never stopped fighting for the life he wants.
“Believe in yourself and you can get through anything,” he says. Even epilepsy.
Epilepsy is a serious neurological condition marked by seizures that can, but not always, result in convulsions and loss of consciousness. It affects almost 10,000 people in the Ottawa region, an estimated 260,000 in Canada and 50 million worldwide. It also affects more people than are affected by multiple sclerosis, parkinsonism and cerebral palsy combined. Yet – largely because of stigma – very few people talk about it.
Kehoe started to have seizures at the age of 18 and was diagnosed shortly after. The seizures were triggered by scar tissue from several brain surgeries he had undergone over the first 13 years of his life after suffering brain hemorrhages.
By his second year of college, the seizures got so bad he had to leave school and give up many activities, including his favourite: working out at the gym. He couldn’t work, had to move in with his father and, worst of all, wasn’t allowed to be alone with his young son, Aaron.
“I felt trapped for years,” Kehoe recalls. “I felt somewhat like a child again because I required constant supervision due to my seizures.”
Kehoe consulted neurologist after neurologist and tried more than 16 medications to control the seizures, but without success. At one point, he was having 15 to 20 seizures a day, resulting in broken bones along the way.
Over the years, he had more brain surgeries – this time for epilepsy. He also struggled with depression and suicidal thoughts. “What motivated me to stay alive, was my son,” he says, “and a fierce refusal to be beaten.”
As discouraged as he felt, Kehoe pushed himself to work out again, with a friend in tow in the event of a seizure. He got involved with Epilepsy Ottawa who encouraged him to do volunteer work with a number of local organizations. Along the way, he began new medications that reduced his seizures to two or three daily. Then, at the recommendation of a friend, he added omega 3 fish oil to his treatment regimen. It worked! With the epilepsy surgeries and ongoing use of medication and fish oil, he’s been seizure-free for eightand-a-half years.
Today, Kehoe lives alone and has a full-time government job. He spends quality time with his now 17-yearold son and is a certified Canfitpro personal trainer who helps clients reach their own fitness goals at The Centre for Strength and Athlete Development. Last August, he participated in his first Olympic weightlifting competition, successfully completing a 66 kg snatch – a personal best. “It was one of the most amazing days of my life,” he grins.
While he relishes his progress, he’s never downplayed the physical and emotional toll of living with epilepsy.
“Epilepsy can have a bigger impact on quality of life than many other chronic conditions,” says Nikki Porter, executive director at Epilepsy Ottawa, a charitable agency dedicated to improving life for those who have epilepsy and those closest to them. “It increases the risk of poor self-esteem, depression and suicide. It can also jeopardize a person’s education, employment and independence, as well as their ability to drive and hold a driver’s license. Its effects go beyond the individual to touch the entire family.”
Shaun is one of the lucky ones. Although around 70% of people with epilepsy gain control of their seizures through medication alone, and some through the combination of medication and diet or surgery, others struggle with seizures throughout their life.
“March is Epilepsy Awareness Month,” says Porter, “and our hope is that more people will take the time to find out about epilepsy. Only by talking about it can we help eliminate the social stigma still associated with it.”
Porter cites examples of many people with epilepsy who have lead full and productive lives, including musicians Neil Young, Prince, Harriet Tubman, and several Olympic and professional athletes.
Kehoe offers this advice for people diagnosed with the disorder: “Don’t listen to naysayers. Find out what works for you, what motivates you and do it. Reach out to social service agencies like Epilepsy Ottawa for information, access to support groups, and referrals to community resources.”
“Above all, never give up! You’ll have down days but you are not the disorder – you’re stronger than it is.”
For more information about Epilepsy Ottawa and its support services, education, school and workplace advocacy, and on-going public awareness, visit www. epilepsyottawa.ca