Values and new visions

At the start of 2021, I wondered if people with chronic illnesses would be looked to for their unique perception on what the world might be like, if people would listen to the experiences of those who have had to drastically alter their existence to suit new circumstances. Going into another lockdown, it felt like this might be the time when people would be looking for help. What I forgot is how everybody needs to go on their own journey, and that you can’t rush through that. It takes the time it takes.

At the beginning of 2020 I was working in a job that I saw as my dream job. I loved what I did, but I was often overwhelmed, exhausted and stressed. I had been spending less and less time at home, I’d quit lifting weights and pretty much every hobby I had, but I was determined to make the most of the job I loved. What made it even more special was the team around me, my wonderful and talented colleagues. We were watching coronavirus reports and wondering if we would have to close. We were on a treadmill that seemed like it could not stop, not for anything. When it did, I found myself at a loss.

At the beginning of 2021 I was weighing up leaving the job. It had been a long time. I had tried so many hobbies that other people seemed to enjoy to keep busy; crochet, clay moulding, miniature painting, baking, calligraphy… all just trying to stave off the need to achieve. Things had changed, started to move on without me as others were seen as more essential, and I found myself wondering if I was really who was needed in that role. I started to think less about whether it was my dream, and more about what was best all round, for the impact the job could have, for my own health, and for the benefit of those around me.

2021 has been a lot about thinking about what really matters for me and, I think, for everybody else. We’ve started to look a little deeper at what really motivates us, what really makes us happy. Why do we do the jobs we do? What impact do we want to have on others around us? Where do we want to spend our time, our money? What really fulfils us and what are we holding on to because we invested so much in it? Why bother with crochet if you don’t enjoy it?

In the grand scheme of things, my life has changed very little. I still work in the cultural sector, though I am back helping others make their work possible. I now work part time instead of full time. I still have a home, my partner, the cats. I read more. I go out less. Though the past few years have been marked with loss of loved ones (something that those in more disadvantaged situations have felt more keenly in the past few years it seems) I am lucky that my immediate family and close friends are still largely well, even as we have mourned the passing of some wonderful people who I miss daily. Losing people, and feeling profoundly the impact they had on me and the people around me, has made me see more clearly what I value, what they valued, and what really matters to me.

I’ve also lost some friendships that I cared about, often not in any big dramatic way, but simply because values have had to shift for many people. Families have had to come first, or livelihoods, or monumental changes have happened that have forced people into change. Equally though, I have found more time to tend to valued relationships that I let grow over when I became too focused on one thing, one place, one sense of achievement. It has been a strange balance, but one that I will always be grateful for.

I’ve found myself thinking less about product, output, events, goals, and more about values, ethos, journeys, process. I’m grateful to have a job that allows for both lists to be important, and I’m grateful for a little extra space to make time for the latter in my personal life. Some people are posting professional highlights, but this is my highlight: a life where other people’s achievements excite me, a life that ticks away without great incident both good and bad, but that will hopefully be helpful.

And, my greatest wish, a life where I can manage illness. I’ve had a few weeks of not being at my best with my chronic pain and fatigue, and I want to stop being at war with my body. I want to finally accept what I can and cannot do, and enjoy what I can when I can. It will be nine years since my viral incident, and nine years of navigating, and I’m certain it will be one of the first years for many more people recovering from COVID. I hope that we can be good to each other in the next year, and I know I will be trying to keep my hand extended. We will surely need each other on the journey.


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