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Volunteer Advocate
cf insights cf insights

Finding my role in the CF Community

Hello, my name is Jim Best and I am a 34-year-old living with Cystic Fibrosis.

I am sitting and writing this realizing how hard it is to speak on CF. I, like the other 4000+ Canadians with cystic fibrosis deal day in and day out challenging, re-calibrating, respecting, battling and enduring CF. This is an interesting platform for which to speak on the condition as it is for the most part to those who have a vested interest or curiosity in it. In my regular day to day life, it isn’t brought up willingly. CF is with me, I’m not ashamed of it, but it has been something I try not to define my regular day and life by. I still take pride when I can mask my condition for as long as possible. That isn’t to say doing it is a piece of cake. I often struggle with trying to live as close to a normal life as possible while having CF, walking uphill, having a long conversation, doing laundry even is a tap on the shoulder that normalcy is hard. Its affected relationships I have had, and has tested my inner and outer strengths. I have a hard time not thinking of its effect on those I love.

I have had the pleasure over the past few years, particularly through Cystic Fibrosis Canada and social media, to connect with other people with CF, and those who share their lives with persons living with CF. It’s provided a great tool for reflection and appreciation for seeing life through an alternative but similar lens. I think this has led to an understanding that everyone, CF or not, has their own struggle. In speaking engagements through Lawn Summer Nights and Shinerama I try to reiterate this to the audience. I have a profound thankfulness that others take time out of their lives to help mine. My sister, who also has CF, has – unbeknownst to her I think – been a huge source of inspiration to try and live less cerebral and more blissfully when possible. Your own experiences mold you into the person you are, but having an outlet to analyze others sharing your condition certainly makes it a valuable tool.

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Enough of the doom and gloom of CF, however, it may be a terrible condition to have, but it also has made me the person I am today and allowed me to do things I don’t think I’d otherwise have done without it. The CF community is full of energetic, vibrant and creative individuals who work and volunteer tirelessly to help with the cause. This coming to light one day made me look at myself and realize having “two arms, two legs and a heartbeat” (thanks mom) that I could be doing more. To give back, I considered what skills I have outside of traditional fundraising. Then I realized; I have loved being on two wheels since I was a kid. From motorcycling on wooded trails to sports bikes, I enjoyed my time on motorcycles. So, in 2014 I drove a rented Harley Davidson from Boston to San Francisco raising over $10,000 for Cystic Fibrosis Canada. In 2015 I followed it up with a trip around Ireland on a rented BMW GS 650 raising another few thousand dollars. Finally, this summer I took my 20-year-old sports-bike named Jenny, from Halifax to Vancouver, again in efforts to raise funds and awareness for Cystic Fibrosis Canada. Totals currently for this trip have come in close to $9000.

These trips were not possible without the support and well wishes of family, friends, colleagues, sponsors and even strangers. Riding motorcycles long distances can be both a physical and mental challenge. Having a message on the road from someone was amazingly uplifting. During my trips, I often carry a handkerchief with the names of those who have passed away from CF. I had no reason to be too tired or too down not to muster up the strength to try and continue on. That does not come without its limitations, however, as I learned after my USA fundraiser where my butt landed in a hospital bed not long after returning. The motorcycling community is a very supportive one; I have met a lot of fantastic people on the road, shared my story, the story of Cystic Fibrosis and learned about their story. People always wonder if I feel isolated and alone doing these trips by myself, but really it never feels that way to me when I have conversations on the road or sit down to a nice email or text from home. Oddly enough I find myself reconnecting with friends I haven’t spoken to in ages.

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I have been asked before to comment on what a world without CF is to me. I have been asked what my life goals are, what I want to accomplish or leave behind. I have had a really difficult time answering these questions. Certainly the prospect of having that CF tap on the shoulder has sculpted me personally in limiting my sights for long term aspirations at times, but it hasn’t limited the way I live my present life. It has presented challenges and obstacles that I still am working through, but I try and wake up early, push myself daily, assess and respect my CF and remember that others wake up and face their challenges everyday too. It is something to be proud of when you can do this, no matter what that personal challenge is. I think making a world without CF for me is knowing that those I care about won’t worry. I will continue to ride motorcycles as long as I can do without impacting my long term health. For me, being on a motorcycle is a way of feeling free while not letting my mind wander into the depths of CF. I do my best thinking when I’m on two wheels as it gives me a clarity I’ve found nowhere else. I do my best fundraising and advocating with a helmet on my head and jumping on a motorcycle, as it’s most certainly my happy place, and to be able to use it as a mechanism to fight cystic fibrosis makes it the perfect parallel.

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