[“What Next” by my mother Susan Brown, the talented rug hooker of Lake Annis Studios]
Learning to live with a new chronic pain condition/ illness is a hotbed of uncertainty. Diet, lifestyle, relationships, habits… every aspect of life must be shifted to accommodate and prevent pain, and it’s often impossible to know what things will look like either in the short term or long term future. Among all these wriggly, unwieldy, shape-shifting life questions, the hardest to wrangle is how the eff am I going to make a living?
The magical privileged benefit of a union-made safety net has kept me from poverty and dependence these past few years, and given me some time to think about what’s next. Without this, I imagine I would have fallen much deeper into the pain and depression hole instead of clawing my way out. This is a good thing. But for people like me who are in a position to potentially wean off this safety net, sick leaves also generally present a catch-22:
Sometimes employers and government agencies offer individually tailored programs that support a gradual return to work and/or support to explore new, more appropriate types of work. More often though, it seems that being eligible for sick pay means you must be classified as unable to work, period –with any attempts to support yourself otherwise being considered fraud– and so in order to make alternative attempts at self-sufficiency, one must forgo the safety net. And that’s where I’m at.
Mostly scary. And something that lots of people deal with when they lose a job, move, or their circumstances otherwise change. So I know us spoonies are not alone in this, but on top of being chronically ill it sometimes feels pretty heavy.
I’ve done my grieving about leaving music education behind, but I still miss it so much that I basically just try not to think about it (so please don’t bring it up!). When I come across Do What You Love and Follow Your Dreams memes, I still think, bitterly, stupid priviledged, ableist propaganda. Do what you can, do what you can!
So with illusions of grandeur, I’m nearly ready for a part-time venture into the world of freelance writers and painters while banking on my employer for continued accommodations so I can still teach part time. This will mean taking a pay cut, at least for a while, and increased challenges in the pain management department. Oi.
I am grateful that my drive and ability to try new things currently outweighs my fear of increased pain and financial instability. It’s the waiting for things to fall into place that makes me want to chew my own arm off. Instead, I am trying to save money, improve my health, reach out to others who have taken similar leaps of faith, and trying to figure out how this all might work.
Wish me luck!
Have you successfully navigated a similar situation? How?!