It felt like a world away – Toronto. I had travelled back east earlier in the year to Prince Edward Island and I remembered a long and arduous trek across the country. Now here I was, once again, leaving the familiar comfort of the West Coast. I woke at 5:00 am, (5:00 am to a person with arthritis is akin to a rusty antiquated robot trying to turn its gears), and dragged my stiff body from the warmth of my bed. Four and half hours later, I touched down in the frenzied and chaotic city of Toronto – still moving like that antiquated robot, but it was for a worthy cause.
I was whisked across the country for ARTHfully Living, an event designed to bring Canadian arthritis bloggers and online influencers together and examine the impact of creating awareness for a disease that many see as their “grandmother’s arthritis”. Our modest group was plucked from all over Canada and represented many different types of arthritis, as well as other conditions that topple our overall health.
On our first night, we gathered for dinner and spirits. The funny and marvelous thing about this first night was that we didn’t talk about arthritis. Nobody said, “Hi, I have RA, what do you have?” Nobody compared their illness, or bragged about who was the most indisposed (a strange sport I have observed in medical waiting rooms). We didn’t line up our medication bottles like soldiers standing at attention. We chatted about who we were, what we did, our likes, our dislikes, our hobbies, our family, and our travels – we told stories of the things that really mattered. Not once did our illness cloud our conversation or define who we were.
The following day was jam-packed with speakers, workshops and discussions. Rheumatologists discussed the advances in medicine, how to make the most of your appointment with your doctor, and the advantage of working with a medical team (physiotherapy, occupational therapy, social workers and nurses) to help manage disease. We vented about our frustrations as patients; we learned how to unravel the maze of technology we call “social media” and how it connects people from all over the world and provides the opportunity to share. We talked a bit about ourselves and our online work. There are as many stories as there are types of arthritis. A common thread was the importance of sustaining hope through creating goals. Having something to fight for is a key factor in resurrecting a life that has changed. No goal is insignificant – if you want to stand, to kneel, hold a cup, put on a ring, walk, or climb a mountain, anything is possible with patience and courage. It is as much mental as it is physical.
I was grateful to be a part of this talented and insightful group. They all found ways to rise above their disease, to allow their strength to shine through their creativity. I am a huge believer in empowering myself. Medical professionals can give you medicine, they can help steer you on the path to exercise and nutrition, but they can’t make you do any of it – ultimately is it up to you to light your own fire and find a way to make your life work. We are adaptable creatures and that’s one of many things that make us unique.
At the end of these lively discussions, we were to participate in an art workshop, but alas, due to a previous commitment, I was whisked back to the airport to catch a flight home. I found out later that our art project was to create hands from clay. I pondered over what would have evolved from my fingers. It probably wouldn’t have looked much like a hand. I’m not skilled at shaping material. I’m sure I would have sculpted an unidentifiable blob – but I think I would have been okay with my blob, because sometimes the creative mess of working your way through life with an illness resembles an unidentifiable blob.
Thank you to Janssen and GCI Group for an inspiring and thought-provoking weekend. Please check out Lene Andersen’s The Seated View for a more comprehensive description of our time together – she describes it so well. It was a pleasure to meet so many amazing people. I look forward to following your journeys.
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J.G. Chayko is a writer, actress, and international arthritis advocate who’s been involved in theatre for more than 30 years and has published poetry, fiction, and creative non-fiction.