Stepping Away
You can’t pour from and empty cup
I fell off the Medium band wagon. It wasn’t on purpose. One of the things about being chronically ill is that I really only have the bandwidth in my life for one thing at a time beyond my immediate family (seriously, I forgot to eat today). I also am exceptionally ADHD. This helps me when I am in a hyper focusing mode.
I write in spurts. That’s just the way it’s always been for me. I can bump out fifty beautiful poems in no time and then not have a single thing to put into words for a year. I burn until I fizzle out and wait for the flame to be rekindled again while diving into the next one thing at full speed.
It’s how I write. It’s how I bake. It’s how I read. It’s how I saved my life. Hyper focusing on any medical literature that could possibly connect. It’s also how I’ve done patient advocacy work- kind of.
I am moving onto a new phase in my life. One that feels more sustainable and less likely to burn me out. I am moving away from being a patient advocate and spending so much of my time and energy online and in patient circles.
This won’t be true in every aspect of my work and time.
I don’t plan to stop working and participating with the Ehlers Danlos support group I help to run with one of my best friends. But I am moving away from the ME/CFS community that I helped to create and sustain for years.
I was thinking the other day about it and there is a part of me that regrets having volunteered at all. That thought was quickly replaced by the realization that had I never stepped up to that table, I would not have relationships with three of my favorite people. And we have helped people. We’ve paved a road to make it easier for those like us to follow in our footsteps instead of traversing rough terrain through a wilderness with no paths. It’s hard to feel regret when thinking on those things.
But it has also been painful in ways I hadn't expected- and in many ways that aren’t worth talking about. I suppose that is another way this experience has helped me to grow. I understand myself better. I understand boundaries more. I know who I am and what I am not and no longer feel the need to defend myself against slander. I don’t feel the need to respond to the abuse that comes my way, nor feel the need to placate. People believe what they want to believe whether it’s true or not. Whether it’s fair or not. Whether it’s right or not. And- it’s not my responsibility to try to change their minds.
I am my own responsibility. It is ok to do what is best for me.
You can’t pour from an empty cup. I have holes that need patching and to fill myself up again. In many ways it feels against my nature to think and speak like this. But I think my journey on the Earth this time around is calling to me that I matter just as much as everyone else- and I should treat myself in line with that truth. I don’t need to burn myself out for others anymore.
