When you care about something enough, you have to do something about it.
Meaning that when a disease affects you, your partner, your child or someone else that you care about, you’re going to take action.
This is the story of the Ride for the Breath of Life. It’s a charity motorcycle ride for cystic fibrosis. In Edmonton, it just completed its fourteenth year. It just raised about $32,000, and over the entire life of the ride has contributed about $550,000 towards cystic fibrosis research. Which is incredible, in a number of different ways.
I’ve been participating in the ride for just over a decade. By my best calculation, I’ve participated in eight rides, starting in 2008. What I know with confidence is that I’ve been a part of the last five, starting with the tenth anniversary in 2014. I’ve also been gradually welcomed into a community that is incredibly close, but can be difficult to know.
Families with CF deal with incredible challenge. Most people that carry the disease deal with daily, multi-hour physio sessions to break up mucous and allow them to breathe, something that the rest of us presume is normal. They digest numerous pills, some simply enzymes to allow them to digest their food. CF-related diabetes is often a by-product, requiring daily insulin injections and careful monitoring of blood sugar levels. And eventually, an oxygen bottle becomes your closes companion.
That’s where Erica, the daughter of a friend of mine, was at two years ago. At that point, she made the decision to put herself on the list as a candidate for a lung transplant. After an extensive preparatory program, and months anxiously waiting for the phone to ring, last May she finally got the call. A donor lung was available, and had her name on it; get to the hospital. Less than 24 hours later, she emerged from the operating room after a double transplant. A few days later, she breathed normally for the first time in her life.
That was just a few days before last year’s ride. Erica wasn’t there, but we were. We rode for her, and everyone else who has the disease. We do that every year. We’ll do it again next year.
Participating in the ride is a little bit more challenging for me than it used to be. It’s in Edmonton, and I live in Toronto. And while there are rides that are—much—closer to home, it’s the ride that I continue to support. I ride for Abe and Erica. I ride for the relatives, friends and loved ones of everyone else that gets out of bed early on a Saturday morning to take part. And I ride for the incredible sense of belonging you find when a community chooses to take matters into its own hands, because it has to, and because it can.
This year started alot like last year. An early morning flight from Toronto to Calgary. Threats of thunderstorms that were followed through on. A soggy climb up Stony Trail turning into a sullen slog towards Red Deer. And then a relatively dry last half, as I edged closer to my destination for the evening.
The day of the ride is a different level of intensity entirely. Registration starts at 8:00am. Which means that setup starts at 7:30am. A parking lot is encircled with pylons, tents are erected, registration tables are set up, PA systems are connected, and a desperate search for the iPod cable ensues before we can actually have some music.
You’re never sure entirely how many people will show up. Sunny days are good, rainy days are bad, and cold days are tragic. We have had 83 riders; we have also had less than 30 riders. The day started off cool and threatening precipitation, and ended off sunny and glorious. Today, we split the difference, with about 35 bikes starting the ride.
A new route was planned for this year, one that combined new territory with old. That created challenges—mostly me trying to get in front of the ride as semi-official photographer—and excitement for those participating, and therefore following someone that knew where they were going.
The ride encompasses some of the most beautiful scenery in northern Alberta. It’s about four hours, from start to finish. There is enough riding to be interesting. There are enough stops to be able to connect with other riders. And by the time you are done, you’re ready to stop. You’re also about to be acquainted in real time with why we’re doing this ride in the first place.
One of the very real challenges of having CF is that carriers can infect each other. Which means that, for many formal CF events, there is one ‘designated’ CF carrier, and everyone else with the disease is cautioned in no uncertain terms to keep their distance. For the ride, there is typically a presentation from a person, their parents or their loved ones of what it was like to live with—or pass away from—cystic fibrosis. It’s visceral, it’s educational and it’s real.
There is also a bit of last minute fundraising. The poker rally is popular, and I still have no idea how I made a winning hand out of a pair of aces. “Heads and tails” is more so, as grown adults grab their head or their ass to project what they anticipate to be the results of a flipped coin. Lunch is eaten, stories are shared, accomplishments are celebrated and we are released into the light and warmth of the day, another ride done. And another ride still to come next year. And another after that. And another after that.
There are few causes that cleave quite so close to my heart. It started because I had a friend, whose daughter had CF. And it continues, because I’ve befriended a community, who are all touched in some way by CF. And I’m touched every year, as I fundraise, by the donations I receive, and by who makes the donations. In particular, what amazes me is the number of messages that I get from sponsors relating their own, personal relationship to CF. Who they know, what they’ve experienced, and why they are giving.
As I mentioned, the ride this year raised nearly $32,000. As of this writing, my team raised $15,917. And I—through all of you—helped to raise $2,944.50. And I thank you for that. I’m privileged to participate in the ride. But I’m grateful to you for all of the support that you provide that makes that possible.