Host of Sickboy podcast uses humour to deal with terminal illness

A young Halifax man with cystic fibrosis who has gained attention for his podcast that takes a lighthearted look at terminal illness will be the keynote speaker at the Ontario Lung Association's annual "Breathe!" gala on Thursday night.

• Sickboy podcastoffers young actor's take on his illness

Jeremie Saunders started his podcast, called "Sickboy: Exposing Illness & Dying with Laughter," with friends Brian Stever and Trevor MacGillivary last September. The 28-year-old actor and yoga instructor says he's used humour to cope with his disease since he was 10, when he first learned that cystic fibrosis is fatal.

Humour is "a form of therapy," which gave him an entirely new outlook on his life, he told CBC's Metro Morning.

Saunders had been kicking around the idea of starting a podcast, so he, Stever and MacGillivary went to the local library to record their first hour.

While one listener admonished the trio that death isn't a laughing matter, the podcast has received "super-positive" feedback from cystic fibrosis patients and their parents, Saunders said.

"We realized that not many other people were having this type of conversation,and it's something that a lot of people keep telling us, especially people who are living with illness, that it's really refreshing to hear these things that are often looked at with this really negative and sad view and putting a twist on it," Saunders said.

"Finding humour and finding levity in an otherwise dark situation."

One episode included Saunders's own parents, who hadn't told their son that the disease could kill him. They were told not to, and so he learned about it from a pamphlet that said the median age for a cystic fibrosis patient to die was 30.

Some 4,000 people in Canada are living with CF, which attacks the lungs and digestive system. The disease has no cure.

When Saunders was in junior high school, a friend called him "disease boy" while the two were in the middle of an argument.

For a few days the words hurt, but then he came to the realization that the words were true.

But he decided he wouldn't let his illness make him feel like less of a person, and it was then that he decided to use it as fuel, a motivating force.

"Since we started the podcast in September we've talked to a number of sick people and this thing that we keephearing over and over again is they don't want their illness to define them," Saunders said.

"And one thing that I've realized since starting this convsation with people surrounding illness is that I used to say the same thing, I didn't want CF to define me. But, I think I have and I do let it define me, but I do let it define me on my own terms."

Saunders says his humour and positive outlook have helped him achieve career success, which includes time as host of a CBC children's show, a documentary with the National Film Board and performing with former astronaut Chris Hadfield.

But he does have down days, now that his lungs are operating at about 70 per cent. His health has been on a steady decline since his late teens.

Two years ago his lung function dipped to the high 50s when he had pneumonia, and he spent two weeks taking three different intravenous antibiotics.

And some mornings he will wake up coughing so hard that he will vomit until his lungs settle down.

He knows those days are unavoidable and are bound to get worse over time. But he feels as though he could make it to age 40 before needing to go on the wait list for a lung transplant.

Meanwhile, he will continue balancing offering patients and their families useful information about the disease with silly humour as long as he is able.

"The fact that cystic fibrosis is a fatal genetic disease, I don't look at it and fear the thought of death coming," Saunders said.

"Instead I lookat that and I go, 'oh, I onlyhave a shortamountof time left? I'd better get my butt into gear and get moving and start using that to my advantage.'"