At every moment of our lives, we have one foot in a fairy tale and the other in the abyss – Paolo Coelho

For years I thought advocacy had to be letter writing and fighting an unjust system, but lately I felt really bogged down with it. The state of the world does not seem friendly lately to the chronic illness population or any group of “others”, whatever that means at any given moment. When I first started this blog, I wanted to highlight the shiny and dull parts of our lives and to create a supportive community where everyone was welcome and could feel safe with their truths. Right now, I would like to focus on the softness and shiny parts of our worlds.

When living with a chronic illness, everything requires so much “more”. More planning, more resources, more money to do the simplest things. Definitely more bandwidth to plan the simplest of tasks. An example is that recently my mobility has been worse, especially my balance. Walking is requiring physio, special shoes, braces as well as pain meds. I am not listing these things as excuses. Sometimes the world I live in just feels really overwhelming and exhausting. I decided that for awhile, the most radical thing I can do when things feel this heavy is to create a refuge light enough to lift me up. You may be thinking a vacation, but even holidays come laden with responsibilities and more planning than I have the capacity for right now. What I need is an effortless place to inhabit. For me, that involved art.

I decided what was needed was to create a world that had all of the things I felt were lacking for me in my life at this time. Comfort, ease, and peace. I may not be able to fix the fairness of our hospital system today, but I can fix the atmosphere in my art studio. Lovely jazz music is playing, my chair is the most comfortable one around, a cup of tea is always within reach. I’m not escaping reality, but am curating my survival space.

If art isn’t your thing, it doesn’t have to be. It could be writing, music, or a walk in nature. I have chosen art because it is safe and a place I feel comfortable in. However, I did want to still learn. I am usually a mixed media artist focusing on acrylic paints. I decided I was going to try to learn to work with watercolour. The reason I didn’t really like it before is that it doesn’t stay put where you put it. It languishes around on the page and moves where you may not want it. That actually felt like it might be beautiful to me right now. All of those colours mingling together on the page.

I started watching some tutorials by an artist Karen Campbell who runs the Awesome Art School online and writes books on art. Some of her lessons were around creating wonky houses and wacky characters. That sounded just like what I was looking for. The ability to create a village or community where everyone could come and support each other sounded perfect. I had never painted buildings so I thought why not? Watercolour is new anyways. So far I have created Silly Sally and her slanted house, Chic Chloe and her Cafe, as well as Quiet Quinn and her library. It is always peaceful and calm in this village and it can grow as big as I want it to be. Everyone will also be sympathetic and supportive. Every character will have their skill and will use it and contribute to the village in their own way. I cant wait to see who else “arrives” in the village. I might show up one day with my walker. Maybe I will teach art classes somewhere. The walker will not be seen as a loss, just another way to get to the library.

More than anything to me, community is so important, with MS or without. All beings can only thrive in community. Everyone should feel people have their back when they need it. If you don’t have that right now, find a way to create it. I love to help people find their things. Send me an email or a message to brainstorm if you are having a hard time thinking of a modality to express and create your own “village” whatever that looks like.

I will always remember a trip I took to Mexico many years ago and I went on a pirate ship tour not realizing that we had to get off the boat and get to shore on a small boat and swim in to the beach. I asked the “pirates” if I could just stay on the boat because I would not be able to swim to the beach. Two handsome pirates told me “Everything is possible in Mexico and we will carry you to the beach.” I am not a small person so was really nervous about it. But they both wouldn’t give in and carried me like Cleopatra on to the beach. And then got me a Margarita. That was them showing me community, even if it only lasted a few minutes but I felt valuable enough for them to want to include me. Two of my favorite ways to relax are watching Call the Midwife and reading Three Pines books by Louise Penny. Call the Midwife is a show about a group of nuns and nurses in England working in tenement houses that build the gentlest community during an ungentle time in history. Three Pines is a fictitious town in Quebec filled with misfits and unique characters where everyone is welcome. No application necessary. These are worlds I crave to live in.

For now, I will create my village, one building at a time, filled with love and acceptance. Who knows who will show up. Maybe if enough of us create these worlds of inclusion, they might influence the real one.

Keep thriving and surviving by supporting each other. I’ll be hanging out at Chloe’s Cafe.

Christine