Photo of J.G. Chayko/: J. G. Chayko affronte le monde avec la polyarthrite rhumatoïde
Credit: J.G. Chayko

The ferry cuts through the stormy grey waters of the ocean. The waves mirror the overcast sky, but there’s a bright spot along the horizon where the sun burns behind a low layer of cloud. I lean over the rail and feel the spray against my bare face as we sail toward the light. It feels like I have finally shed the husk of a long hibernation and am returning to the world again.  

The first six months of the pandemic I did what everyone did — I stayed home as much as possible, I didn’t visit anyone in person, I masked up to go grocery shopping, work, and attend appointments. I sat out on my patio every night and watched the sun set in crimson fire at the end of each day wondering when, or even if, it would end. Over the months of continued restrictions, we adapted to our new circumstances, and then there came a day when I knew that the virus was always going to be with us, and it was time for me to figure out how to live my life in this new world.  

It’s been a rough couple of years, and no one has felt the heaviness of a pandemic world then those of us with RA or other autoimmune conditions. The world opening and going back to “normal” is a hot topic in the chronic illness community. Many feel they are being left behind. I see it simply as another obstacle to overcome. The world has come through a storm, and now, whether we are ready for it or not, the clouds are breaking. Restrictions are lifting all over the world, masks are coming off and some of us can’t help but wonder what that means and how we can live in the undercurrent of a COVID world 

Making a Choice

Facing a world without masks and restrictions is challenging at best, but our leaders and governments never implemented mandates to keep me safe before the pandemic hit, and I don’t expect that they will reinstate those mandates now that we have lived with it for two years. I am left with two choices: keep sheltering from life as it carries on without me or figure out how to move forward with it. 

I started with baby steps. My husband and I took long walks around our neighbourhood and nearby parks for fresh air and exercise; we graduated to dinner and drinks on outdoor patios to support our favourite local restaurants; we became tourists in our own province, travelling to different communities and enjoying the beauty of our own west coast. We breathed in the salt of the ocean, felt the desert heat on our skin, went for walks through the vineyards and along the shores of the Okanagan lakes. We went ahead with our wedding plans and got married on the beach under the blushing pink sky of dawn. We found safe and effective ways to enjoy moments and time together. The more we went out, the easier it became. It was empowering. 

The biggest criticism against the chronic illness community as we try to move forward at our own pace is that we are living in fear. People call us fearful for continuing to take precautions. Don’t let those words influence your decision. It’s not fear — it’s rebuilding, re-inventing, and recovering. I have the tools to assess my own risk and make the safe decisions. None of us are guaranteed a long life and I intend to make the most of mine.  

There’s no normal anymore, there is just what works for you. There’s always risk, I face it every time I leave the house — it was there pre-COVID and it’s there with COVID. The virus doesn’t scare me as much as wasting the only life I will ever have so I am facing the world again. I’ll do it safely, with masking and distance, hand-washing and self-monitoring, but I am going back out there.  

Life is burgeoning around me, waking up from its long winter sleep and I am burgeoning with it. When I look back at the last two years, I see a life packed with wonderful moments that far outweighed the inconvenience of pandemic restrictions. The pandemic forced me to focus on the things that were important to me, and I thrived in that modest world, but now I’m ready to stretch my boundaries and break the confines of my protective shell. 

Maybe I am the anomaly of my community, ready to move forward when no one else is, but the world is not going to wait for me to be ready, and neither will it protect me. It will move on whether I choose to participate in it or not. Many would say to wait a few more months, maybe another year, but I don’t see the point. Who’s to say things will be different in a few months anyway? Tomorrow is always in shadow — tomorrow may not arrive at all.  

There will never be an ideal time when we’ll all be comfortable emerging from our husks. In the end we must choose what is best for us. It’s all the control we have. COVID isn’t over, but neither is my life. If my time ends tomorrow, I want to go out having lived today.  

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