By Grace Hall
This piece alludes to medical gaslighting.
When the Taylor Swift album came out in 2006, my sister and I were swept into her twangy teenage anger. We didn’t know the teenage breakup blues yet, we were seven and nine, but songs like Picture to Burn had us imagining that we could be just as furious as Taylor. We also didn’t know that we’d find ourselves with chronic illness – different ones – but relatively linked in nerve related root of them both in our late teens and twenties.
I remember us cackling as we watched a young Taylor Swift set fire to a red pick-up truck.
When I was twelve and my sister was ten, our parents took us on six-month trip around Australia. I was upset about it, having missed my year six graduation. There’s a photo of me standing in front of the extra-terrestrial beauty of spinifex and red dirt, with my arms defiantly crossed. My sister was enthused and ready for any adventure that my dad would propose like, let’s climb up the biggest rock you can find, or swim down narrow – seemingly bottomless gorges. I was a more anxious, hesitant kid. But as soon as Hey Stephen would come in the car, I’d give in to the grumpiness and the anxiety. We would sing every word and mmm mmm mm through the intro, adopting the sass of Taylor Swift in the line,
All those other girls, well, they’re beautiful
But would they write a song for you?
flick our hair and giggle at our synchronicity.
The migraines started for my sister when she was seventeen. She managed school and social life like an able-bodied person for some time. One GP said the following year that it could have been the stress of year twelve causing them. It wasn’t, they got worse every year. Then there was a pain specialist a few years later, who listened and tried several invasive procedures to try to halt them. On the bad days, when she couldn’t move her neck or speak because of the pain, no one in our family knew what to do or how to carry themselves.
A few years ago, before I got sick, my sister and I were sitting on the couch together. I was missing my sister well and colourful and she was missing having a body that didn’t hurt all the time. My dad suggested we put on some Taylor Swift film clips. What followed was a catalogue of Taylor’s top hits; we blasted the TV volume and watched young Taylor dressed up Rapunzel-like in Love Story. You Belong With Me was next, the song I used to embody whenever I had a crush at school. Dad sung along with us, and for a brief moment we were all transported somewhere else – into the glimmer and glitter of a Taylor Swift fantasy.
Two years ago, my pain condition started abruptly, a rare condition called Complex Regional Pain Syndrome. My foot was red, sometimes purple. It felt like a hammering, heated pain. I could barely put my foot on the ground. When it started, I don’t think I listened to music at all. I was interstate, away from my sister at the time. She was the only person I knew would understand the loneliness, the frustration, and the gravity of mourning a painless body.
I moved back home when Taylor started releasing, Taylor’s version. Both of us had been through a string our treatments for our chronic illnesses. We’d been let down by the narrative of, I can fix you and you are broken, that travels the medical system. We’d been told that if we only ate better or worked less and socialised more that our bodies would be freer. Our experiences and pain journeys had been different, but we understood each other so deeply because of it.
To this day, our messages to each other feature rating of our favourite Taylor Swift songs. They also feature gentle encouragements, reinforcing that we need to listen to our bodies, that spoons are precious – that it absolutely sucks being in pain. Having to choose between work, and study because both are impossible. Having to cancel on people. Having to explain over and over that we don’t function like everyone else.
The other day, I listened to Taylor’s song, The Best Day for the first time in years. It instantly reminds me of my sister. I sink into the line,
Don’t know how long it’s gonna take to feel okay
But I know I had the best day with you today
because I think of my sister, and how despite everything, we’re okay because I have her and she has me.
Grace Hall is a queer, disabled writer and disability support worker based in Naarm (Melbourne). Her writing explores the joys and pitfalls of growing up queer in rural Victoria. She is fueled (almost) entirely by potato and existential dread and currently reads a lot of non-fiction. Grace’s work has been published by Bramble Journal, Paper Road Magazine and Writers Victoria. In 2022, Grace was a participant in Toolkits Lite: Non-Fiction program.
You can connect with Grace on Instagram: @sick_reads
