Updated: Apr 7
Recently, I dabbled in being concise. It doesn’t come naturally! The first time, I tried to sum up my vision for the world in a three minute video. It took me over thirty attempts, and I still wasn’t 100% happy with the final version. I sent it out to live in the magical mini-world of the One of Many community, and the feedback was gorgeous. People spoke with warmth about the world I wanted to create and my ability to do it - fantastic. And no one missed the two minutes of statistics left out of my preferred version in search of brevity - even better.
The second time was a much wilder, unruly beast: tell your story in sixty seconds. Sixty seconds?! I can barely rattle off all my labels in that time, especially if we’re going for the formal systemic lupus erythematosus (which rolls off the tongue like a square brick over a safety railing!)
Once I started to plan it out, it got me thinking… what is the heart of my story? “There once was a girl who…”? I was stumped, so I followed my own most repeated advice - I got curious.
Is my story one about growing up bisexual and deeply afraid of how to be attracted to all the genders in a very straight, very binary world? I don’t think I heard the word bisexual on a mainstream television show until the glorious Detective Rosa Diaz came out in Brooklyn 99. All I knew is that kissing girls hadn’t been well received the few times I’d tried to talk about it. Much easier to play it straight - if you can like boys, there’s the simple choice. This older, slightly wiser version of me has cynical laughter and a pity hug for that inner 13-year-old. She’ll learn her lesson later.
If it’s more than just “hey I’m gay” then what else? Is it a tale where one brave teen girl took on the medical establishment and… got her arse kicked around the block for over a decade? I started showing symptoms at 16… I got a diagnosis at 28 (years, ten months and three days old… not that I’m counting…) and I was, at various points, diagnosed as stressed, overworking, highly strung, imagining things, seeking medication, anxious, depressed, taking the wrong contraceptive pill, taking an even worse one, and (I’m fairly sure my second to last GP thought) absolutely over-the-edge-there’s-no-turning-back-from-this “crazy”.
In her defence, seeing my highly organised, colour coded list of symptoms dating back over the past twelve years did look a bit extreme for someone who “wasn’t sick”. She probably also didn’t enjoy my “I’m not leaving until you order tests” ultimatum either. But I was right. I knew my body, I knew my science, and I knew that typical twenty-somethings didn’t spend their nights crying in pain. Turns out you aren’t supposed to have antibodies to your own DNA - who knew?!
But that doesn’t feel like the full picture either though.
I’m still working out how to talk about my trauma - the bits that I can offer up for public consumption and the parts that are too tender to bare to the world. I listened to Labour MP Rosie Duffield speak in the House of Commons about her experiences with domestic abuse and I am still not sure whether I am in love with the bold, stark truth she committed to the record, or afraid for what will come next for her now it’s done. That’s a puzzle for another day.
So what’s my story then? The sixty-second elevator pitch of my life…
There once was a girl who grew up an ugly duck in a swan’s world. She thought she could pluck out her feathers and become the glorious, glowing white vision of loveliness she saw on the next pond over and it did. Not. Work. She let the people around her teach her the rules of how to be, and broke her body trying to make it more palatable. She crashed, burned and tried again. And again. And again. Until one day, she found a cunning, beautiful, woman who held a safe space around her fire - for the burning down and the blazing up - and she learned her truth. She wasn’t a duckling. She wasn’t a swan. She was a phoenix. Shaped by the fire, flowing in cycles of growing and releasing… each version a little more true than the last.
In the words of my favourite poet/inspiration/truth-speaker, Alexandra Elle: