For the past week I’ve been waiting for words to pop into my head. Words that will allow me to express what certain events in the past month have meant to me. And they just haven’t come to me. I guess that means… there are no words.
On June 22nd I was surrounded by a ton of people that I respect and value, particularly for the support they’ve shown towards the CF cause. The Rod Brind’Amour Golf Classic raises a huge amount of money (for the small town of Campbell River!) for Cystic Fibrosis Canada to use for research grants, clinical care, advocacy and more. It’s a fundraiser that has grown immensely over the years and luckily we’ve had the continued support of several very important people - Rod Brind’Amour especially. Every year I’m honoured to publicly thank Rod for coming to the event and for everything he does for us. Rod means a lot to me and has truly become a big brother figure over the years. This year I wanted to show him, and everyone at the event, what a typical day looks like for me so he could see why it’s so important for me to have someone in my life who inspires and motivates me. So, James and I created a video that can be seen here if you’re interested.
Rod is someone who gives me a ton of motivation, which, if you watch the video, is key when living with Cystic Fibrosis.
For the past two years we’ve also had the privilege of having Ryan Nugent-Hopkins attend our event and I just can’t say enough good things about him. Ryan’s a young hockey star who happens to have a heart of gold. You can tell his head’s in the right place and (lucky for us) his heart is as well. He’s kind, generous, and focused on what’s important in life. I’ve had the pleasure of meeting his mother, Debbie, who’s genuinely kind-hearted and has clearly taught Ryan the importance of giving. It’s such an honour having him and his family join our event.
That night I was also presented with the Summerhayes Award which completely shocked me. It’s a national award that is presented to an individual with CF who’s demonstrated an exceptional commitment to the CF cause. Although I’m thrilled to receive this award, I certainly don’t feel I’ve done much to deserve it. Having said that, I was truly honoured to accept it and I’m filled with such gratitude each time I look at it sitting on my mantel.
On the very same day of the golf tournament, the “Gear up for CF” bike ride began; An epic ride from Vancouver to Banff over 9 days. Cyclists rode anywhere between 100 to 190 km’s per day and a LOT of those kilometers were up HUGE hills! Krista Houston is one of my very best friends who I cherish very much. She’s a friend who I can turn to when I’m having a really bad day. She’s a friend who knows what PFT’s are and why they’re important to keep track of. She knows what it means when I have to go on IV antibiotics. And she can tell when I’m too sick to do the things I love to do with her. She’s also a friend who decided to take part in this years “Gear up for CF”. So, driving up to Banff to greet her at the finish line was an easy decision for James and I to make.
Krista was riding with an amazing group of people. There were people with CF, people with CF who’ve had double lung transplants (who are doing GREAT by the way!), parents of people with CF, people who’ve unfortunately lost loved ones to CF and people who just wanted to be a part of something remarkable.
The CF community has always had this amazing spirit of camaraderie. A kinship with one important goal in mind… to find a cure or control for Cystic Fibrosis. Being amongst this type of solidarity gives you feelings of gratitude, fulfillment, goodwill, friendship and purpose. It reminded me why people volunteer for CF.
At the finish line I was reunited with a dear friend who I met at one of the very last CF camps when we were about 11 and 12 years old. We wrote letters to each other for a few years, but as teenagers do, got caught up in our own lives and lost touch. Being able to reunite with this friend was incredible to say the least. I could have chatted with her all night. It was as if our connection had never been lost and we were able to pick up where we left off all those years ago.
What a fabulous day in Banff! I was able to reconnect with an old friend, welcome another friend as she completed 1200 km’s (on a bicycle!), discover that parents of children with CF hug others with CF with the same love and caring nurture, and bask in the joy of these people all connected to CF. Inspiration bloomed as we celebrated the riders accomplishments.
Some of you know that it’s not recommended for people with CF to be in close proximity to each other because we can share bugs that are harmful to one another. This makes it incredibly difficult to connect with others who are going through or have been through similar experiences in dealing with CF. If you’ve ever had to get through anything difficult in life, you know it is a huge help to talk to someone who’s been there, who can truly empathize. As you may imagine, it’s the same with living with CF. Connecting with others with CF means that you are not alone. And it’s just not the same when it’s on the phone or online. Being present amongst a group of people that have one thing in common is remarkable. It was the first time in a long while that I didn’t feel alone with my disease. I so look forward to the day we can hug each other and not worry about our CF bugs.
I am so very proud to be a part of the CF community and look forward to many more CF events. But perhaps, someday soon, CF won’t be the reason we get together for events. Perhaps CF will simply be what we had in common and a cure for CF will be, in fact, what brings us together in the future.
I'll leave this post with a quote that I absolutely love. A quote that reminds me to do things in life with purpose and meaning.
“Choose to Inhale, do not breath to exist” – Mattie Stepanek