This afternoon I had a ‘ticcing fit’ in the warm waters of the Pacific Ocean. Leftwing Idiot and Innes helped me out of the sea and onto the beach. I could feel the warmth of the sand through the towel cushioning my body, and see swathes of blue sky above. This is definitely one of the most relaxing settings for a fit that I’ve ever had. And five years ago, all this would have seemed unimaginable.
On 21st October 2011 I woke up with a surge of intense tics that were preventing me from speaking or controlling any of my movements. This was the first of many episodes that day. Back then I didn’t have the words to describe what was going on, even though these tics been happening on and off for many months. But with the help of my friends and family, my doctors, my social worker and Access to Work I developed the strategies and language I needed in order to manage my changing needs, continue to live independently, and work full time.
Back when this started happening regularly, just leaving the house felt daunting. But having the right support has meant I’ve been able to do things I could never have imagined possible – not just swimming in the Pacific but also enjoying music festivals with my friends, writing a book, performing live on TV, having incredible conversations, organising events for children, creating a stage show and touring the world!
Today is a date that always holds special significance – it’s my Fitiversary.
I can’t think of a better way to celebrate than by spending it on a glorious Australian beach, surrounded by friends, having a delicious lunch and then later sharing my journey and experiences with an audience at Queensland Performance Arts Centre this evening.
There have of course been some upsetting and challenging moments too, but with responsive emotional and practical support there’s always been a way through. My ticcing fits are manageable but I know my life would be very different if the resources that let me to live it were not in place
Five years ago I was shocked and frightened by my changing tics. Today I feel incredibly lucky and happy.