Dear Sick Girl (Welcome Back)
Updated: Apr 27, 2021
The past few weeks I've been off from work for pain management. About 6 months ago, I injured my neck lifting something relatively inconsequential. The subsequent healing has been anything but. Here's some gentle reflection.
[Image Description: A 4-year-old girl with red curly hair is sat on a plastic chair, looking away from the table distractedly. There is an unfinished puzzle in front of her. She is wearing a small medical gown. The medical apparatus in the far background of the photo reveal she's in a hospital room.]
I've just had my wisdom teeth out on Thursday before the weekend (and Perth's snap lockdown), so I thought I'd take the opportunity to help mum clean out the house in the form of obsessively filing stray photos by month-and-year into photo albums. I came across this photo from 1998, my heyday.
This photo struck me because of my current predicament: not only am I at home with icepacks on my cheeks instead of out enjoying the long weekend, but also because I've been a form of 'unwell' for the past 6 months.
This photo is significant because it was taken on my first real holiday to regional WA with my grandparents and mum. We'd packed up and gone on a road trip to Monkey Mia back in the glory days where the family had the freedom to go away for over a week whatever time of year they wanted because I hadn't started school yet (you're welcome). I was ecstatic, as any 4-year-old would be about going to visit dolphins.
Here is proof of how stoked I was to be on holiday:
[Image Description: The same 4-year-old girl with red curly hair wearing a blue shirt is stood on a sandy beach with her arms outstretched, stoked in her facial expression as she proudly looks into the camera.]
That photo was taken 4 days before I came down with a case of tonsillitis (or something similar) so bad, that I had to be hospitalised for the rest of the trip. Apparently I'd forgotten to pack my immune system for the road.
Four-year-old me had no understanding of why I was sick on holiday, or of the cruel irony of what a getaway was meant to entail. I think the effort my family went to of taking a photo of me in the children's ward was to try and brighten my experience of the trip, because I was spending nights sick and confused in a regional children's hospital ward instead of by the beach, but now as an adult I look at those photos side-by-side and get a strange twang of where I first started to feel my own limitation.
Fast forward and I was diagnosed with Elhers Danlos Syndrome (EDS) at 15 after a-few-too-many injuries, a condition I recently learned often also means you have lowered immune system (which explains a lot to poor dolphin-hopeful, Monkey-Mia-bound Sam). I add in a quick disclaimer here that EDS manifests differently in every body (which is why the symbol of the community is a Zebra, because all stripes are different) so there's no real good in comparing my experiences to any body else's, but my condition is generally down to joint paint and hyper-mobility.
My healthcare strategy for EDS for the past decade has just been to ignore the fucker. Have I been to the physio? A few times. Should I have been going more than that? Absolutely.
What EDS has amounted for me is a 6-month slow and painful recovery from a neck injury that shouldn't have cost me this much time off work, this many GP visits, tele-health appointments, new specialists, physiotherapy appointments and equipment, and liver-fortifying amounts of Voltaren gel. There's the literal financial expenses, but the mental ones too. I haven't been able to lift my own suitcases, my own kettles full of water, my own laptop case without experiencing pain in my neck, between my shoulders and down my spine. What EDS has become for me is 6-months of pain. The type of pain that has made my wisdom teeth removal actually almost unnoticeable (except for the stitches) (and I know I'm preaching to the converted if I'm talking to circus artists about frustrating injury recoveries).
EDS has meant that I've put the breaks on a lot of projects that require me to sit at a desk and work for extended hours, which unfortunately means most of my creative producer work et al. EDS has felt like dropping the ball on projects that are collaborating and supporting the chronic pain community, ironically.
These last few months, having EDS and independent producing have felt hard-walled incompatible. Last week I sat across from my new rheumatologist-and-pain-management specialist and as she wisely told me to "listen to my body": if that means I'm in pain after sitting at a desk for over 15 minutes, that means I get up and stop working after 15 minutes. Have you ever gotten into a flow of work or study and had to stop after 15 minutes? Keeping up with productivity culture, especially the arts-grant-writing productivity culture that's so prevalent in our COVID-19 context, does not allow bodies like mine to be interrupted every 15 minutes. Being an independent producer looks different for everyone, and it's really hard not to compare myself and my outputs with other companies and collectives (independent or major), but maybe that's also just imposter syndrome #throwback. I now may just need to leave the mental comfort of what I understand my own productivity to be, to evolve from here, and moderate my body for pain management and recovery. So if you've been wondering what's been happening with Get Well Soon as a project and why it's dropped off comms: it's coming along, as is my healing.
Yes, I theoretically should have been healed from that initial injury by now, but after I went backwards a few weeks ago I was in more pain than where I started. But I've rallied again, I've just started a physio rehab program that will take my bank balance down but my hopes higher than they have been in months. This is all part of a difficult recovery and I'm grateful that it's not forever.
All I can ask is, doth not judge EDS sufferers for choosing to ignore their conditions if they do, but support them when they try to take them on. I've watched on kind of enviously for years as my peers and circus friends take cardio or cross-fit classes and apparate abs, knowing that if I tried joining anything as high impact that quickly that I would probably blow a fuse. To reach my peak physical fitness feels like an impossible mountain to me, in an industry where I look around and everyone's set up camp on top of mountains. Currently my rehab exercise app is telling me to lay on a foam roller for 5 minutes and breathe (literally just breathe with my arms out). Part of me still wants to ignore what I've been told and get back to full-speed project work where I sit hunched over a desk for 8 hours without moving, but does that ethic defeat the values of a project like this anyway? Where is the heart in creating an inclusive circus company if it itself is not accessible to work in? Have I overworked my sense of irony?
For four-year-old Sam, this is an incredible opportunity to reclaim some of that health that stopped me from meeting all the dolphins. Besides, baby Sam had shit to do too. She had places to be, people to see, juice boxes to dominate*. I owe it to all of us to get on top of this injury and start managing (or at least respecting) my EDS. I am privileged to have a supportive collective around me on this project. I am privileged to have a supportive family, a supportive workplace and employer, and for private health insurance. And I'm bloody excited to maybe do a push up one day? Maybe?
Punchline is, I welcome you (anyone reading) back to Get Well Soon, and look forward to making project announcements in the coming weeks. PSA: Big things ahead, 2021. Let's try take it at a sustainable pace.
*Proof of baby Sam's power lifestyle:
[Image Description: The same girl with curly red hair sits on a plastic deck chair. She has her face painted with exaggerated red lips, pink cheeks and blue eye make-up. She gazes off out of frame, looking deep-in-thought as she sips her Golden Circle juice box.]