Still here, still trying to move CF ‘expiry date’
The day I was born, I was baptized immediately and five hours later was read my death rites. After being born seemingly healthy, I suddenly turned blue due to a diaphragmatic hernia, an occurrence that came with an 80-per-cent chance of death. Two years later, both my sister and I were diagnosed with cystic fibrosis.
At the time of my diagnosis, children with CF were only expected to live until the age of 13. Now, at 33, I’m still alive and doing relatively well.
I’m luckier than the dozen or so CF kids my sister and I shared rooms with at the hospital: we are the only two fortunate enough to still be alive today. This says a lot about the wonderful care we’ve received over the years, along with the uncountable intangibles that our family provided in stability and love.
It wasn’t until Grade 8, when I had to read an article out loud about cystic fibrosis, that I was made aware of my own mortality. While reading it, I got trapped on a line that I had never heard before: “The average life expectancy for a cystic fibrosis patient is 33.” I was forced to face the reality of my illness head on. Imagine at 13 believing that you only had 20 more years to live.
The following decades have been spent remembering to take my pills, doing my daily nebulizers and therapies, along with regular checkups and tests every three months. Every time I catch a cold, I hope it doesn’t turn into a lung infection — inevitably it always does. I then take weeks of heavy antibiotics, which wreak havoc on the rest of my body, while I try to prevent further lung damage. I also try to have a life.
Consciously or not, CF has been a part of every decision I’ve ever made. It’s an internal curfew whether I like it or not; it’s forced me to put down the extra drink or sleep the extra three hours when needed.
I know what it’s like to have an expiry date or fear making longterm goals. In questioning life’s purpose at an early age, I’ve been able to make choices to try to leave my mark on the world, which has inspired my chosen career in film.
After a decade of making mediocre movies and attempting to learn my craft, at 30 I finally tackled cystic fibrosis in a personal project, Foreverland. It is semiautobiographical in content, if not in narrative, and has raises more than $200,000 for CF worldwide.
In 2013, I participated in the inaugural Lawn Summer Nights event in Ottawa. Lawn Summer Nights is a lawn bowling fundraiser that is held in cities across the country and benefits Cystic Fibrosis Canada. Founded in 2009, the event has helped raise more than $1 million, generated awareness about cystic fibrosis and revived one of summertime’s classic leisure sports: lawn bowling. Here in Ottawa, we’ve raised more than $80,000 in two years.
This July, I will once again be lawn bowling in support of Cystic Fibrosis Canada. Joined by 40 other teams, I will be fundraising to help fund life-saving research for those living with CF.
I wasn’t supposed to be here 20 years ago. Hell, I wasn’t supposed to be here 33 years ago, but I am. I know I’m here because of the hard work and research that has been endlessly funded by fantastic events just like Lawn Summer Nights around Canada and the world, which have consistently allowed us to keep moving the “expiry date” forward.
Join me, my family and friends in making CF stand for “Cure Found”, and helping Lawn Summer Nights Ottawa, which begins July 8, reach its fundraising goal of $50,000. To make a donation, or to purchase spectator tickets please visit www.lawnsummernights.com/OTT.