MONTREAL — Jerry Catalfo remembers sitting in a Toronto subway car when he had a violent epileptic seizure — and no one came to help him.
“I remember they stopped the train and had everyone clear the train because they thought I was on drugs or something,” he said in an interview.
“There was an invisible bubble around me … nobody wanted to get too close to me.”
When he finally came to, transit officials realized he wasn’t a threat and passengers were let back on the train. The experience five years ago wasn’t the first time the investment banker with the National Bank has had a seizure — they started at the age of 12.
Generally, people have been sympathetic when he has a seizure on the subway or a bus. Catalfo, who’s now 46, says most of the time someone will hand him a handkerchief or a tissue if they see him drooling.
The father of two says his convulsions got worse with the arrival of his son 10 years ago.
“Some months I’ll have three seizures and I might go a couple of months without any seizures at all,” he added.
Catalfo gets what are described as “tonic-clonic” seizures which exhaust his entire body and which require at least one day to recover. But he praises his employer for having a “fantastic” attitude.
“They tried to accommodate me as best they could. I asked if I could work from home because that might relieve some of the stress so they allowed me to do that,” he said.
Then, after having “too many seizures” he decided four years ago to go on long-term disability.
It’s estimated that about 300,000 Canadians have epilepsy, which includes those who take anticonvulsant drugs or who had a seizure within the past five years.
Epilepsy Canada stresses on its website that it is a disorder — not a disease — and it is not contagious.
One expert has some basic advice on how to help a person who is having an epileptic seizure: Roll the person on their side and keep them safe and away from any objects that can hurt them.
If the seizure lasts less than five minutes, the individual will probably be OK, but if it lasts longer, then 911 should be called.
There’s a misconception that something should be placed in the person’s mouth. But that should not be done because a sharp object could cause injury to the person or the individual who is trying to help.
Dr. Mac Burnham, a director of the University of Toronto’s Epilepsy Research Program, says one in 300 people live with uncontrolled seizures and they are the ones who have all the problems.
“They are frequently fired if they have seizures at work,” he told The Canadian Press.
At least Catalfo has an understanding employer.
But 32-year-old “Robert,” who does not want his real name used because it could jeopardize his chances of future employment, hasn’t been so lucky — and has been fired twice because of his epilepsy.
The IT specialist, who lives in Toronto, once had a high-powered job and handled mergers of computer services for several major companies. But his life took a turn for the worse when he had his first seizure at the age of 23.
The first attack occurred during a lunch break while he was working in the U.S.
“I was taken to hospital and nobody knew what happened,” he recalled.
Then six weeks after his first attack, he had a second one. He thought the seizures may have been stress-related so he decided to take a break and flew back to Toronto.
Robert says that’s when doctors found a pulmonary embolism and determined he wasn’t getting enough oxygen to the brain.
He says his seizures got worse over time and, as they did, he began to be isolated.
“Initially, I did have a circle of friends who were still around me, but as time progressed, my social circle completely, completely diminished,” he said.
“Even my close buddies started looking at me as a sick man.”
He went on disability, but as soon as he came off it about a year later, he was offered a layoff package by his American employer.
“They said ‘Look we know we’re not supposed to, here is a settlement plan and we’d like you to leave,”’ he said.
Robert then found work as a consultant with a Montreal firm and even told them he suffered from epilepsy when he was hired. But he was fired on his second day on the job.
“They actually told me over the phone: ’The reason we’re firing you is we’re afraid if you have a seizure or do something bad physically, as in break something, our insurance premiums would go through the roof,”’ he said.
Robert is currently taking a combination of two medications and has seen improvement over the past eight months.
“My states of seizures have come under almost complete control. (but) I still get a small loss of orientation every two or three weeks or once a month,” he said.
As for his chances of getting a job in the future?
“It’s completely unknown,” is his response.
Epilepsy Toronto may be of assistance to people who are looking for work.
It has two employment councillors who can help write resumes and search for jobs. They will even go to the workplace and help employers understand what kind of accommodations are needed.
Burnham says in Robert’s case, there wasn’t much that could be done.
“We followed up legally and we found there was really no recourse for him,” he said.
“When we went to civil rights lawyers they said: ‘It happened in the United States and we can’t pursue that.”’
Robert could have taken legal action against his Montreal employer, but didn’t have the resources to go on.
“He could have challenged it, but he’s out of work,” Burnham said.
About 30 per cent of people with seizures will be able to control them if they take the proper medications, he said.
“So the average person with epilepsy is under control, drug control, and may never have another seizure,” he said.
“The actual truth is if you have a person who has got proper drug control, the employer will probably never know that person has seizures — nobody will know.”