If you’ve been following me on Twitter or listening to my podcast, you have probably gleaned that I’ve been having a severely rough time for the past few months. As I mention often, I live with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), which is difficult at the best of times, and over the past 18 months it has been steadily getting worse. It means I can’t do things as perfectly as I would like, for example finishing The Other Movie Project with 12 shiny monthly instalments sitting in my archives. Instead, the blog posts kind of tapered away while my health got worse. This annoys me. This annoys me a lot.
I like to do things well. No – I need to do things well. It’s a personality trait that gets me good things and also bad things. The same people who tell me to take it easy on myself are also the ones usually telling me how “naturally good” I am at something. “You’re just a natural!” It sets my teeth on edge: I’m good at stuff because of how hard I’ve worked at it. If I stop putting pressure on myself, surely the praise will stop, too.
This is a thing I am working on within myself. I’m trying to do everything at 80% instead of my usual 120%. I would tattoo “TAKE IT EASY” on my forearm if that wasn’t a rather extreme tactic and a bit counterintuitive.
As a chronically ill person, I’ve had to adjust my personal standards, to be pleased that I managed to take a shower today instead of taking that as a given. I still get frustrated, comparing where I’m at now with the ideal, healthy life I thought I’d be living. When I became disabled it felt like I was transitioning out of “the world” and into “sick person land”. It still feels that way sometimes, but now I try to lean into it.
Actually, I still live in the world.
I’m telling you all this so you’ll understand what this means to me:
In the new Frankie magazine that came out on Monday, they feature me in a showcase of young creatives doing interesting things in 2016. I did the photo shoot and interview for the Frankie feature when I was at one of my very lowest points, physically and mentally. The acknowledgement of my career and my work gave me a huge lift. And I wasn’t being singled out as a “disabled person to watch” or even a “woman to watch” (which is always nice but kind of feels back-handed) – I was recognised just for being creative. For what I do!
Look what sick people can do!
We do things!
Flipping through the magazine, or being on ABC Radio lately, I’ve been having moments I wish I could send back to my teenaged self while she grappled with her new diagnosis. She’s hoping that she’ll be a writer and be in magazines and talk on the radio one day, and she can’t see a way to doing any of that while she has ME/CFS. She’s desperate for the illness to go away forever. I daydream about going back in time and telling her it won’t, it will come back and stay, her worst fear will come true. I’d also tell her that while she is disabled by illness, she will: perform poetry at the Sydney Theatre Company; be invited to teach workshops at a university (she’s a real nerd, she’ll love that); see her writing published in a book; be interviewed on triple j (she’s 16 and triple j is everything, this will freak her out); get PAID to tell jokes; and do a photo shoot for a fashion magazine. And sometimes these cool fun things will coincide with the absolute worst dips in her health, or will even happen because she’s sick.
But she probably wouldn’t believe me tbh.