I didn’t set out to be an advocate of anything. I spent years of my life in perfect health, always carrying a trace of that spirited invincibility the young know so well. I lived life on my terms, and smoothly navigated around the obstacles that were dropped in my path – the one I never expected was chronic illness.
When I was diagnosed with early Rheumatoid Arthritis, I had no idea where my journey would take me, no conception of a life after diagnosis. I’d read the facts, met others with the same disease, and assumed I’d be walking in their shoes. I was wrong. RA is as individual to each person as a snowflake. It took almost a year before I noticed how much of the life I’d built had been left on the roadside. My body could no longer handle the physical stamina of dance. For a little while, I lost the energy and resilience for theatre life. That’s when I decided to create the blog that started me on the path of an accidental advocate. The Old Lady in My Bones was created from an essential need to find my way through a disease that was slowly transforming my life. I needed to write, to fill a creative void I thought I was losing to RA.
I had always written.
I began writing in childhood, keeping diaries, writing poems to my great-grandmother, creating short stories from the embellished drama in my elementary school life. I wrote in my teen years about love, loss, and growing older. I wrote as an adult, crafting the early stages of novels, memoirs, and fiction. I filed them all away, waiting for the day I was ready to release my words out into the world – when RA came crashing into my life, I no longer had a reason to wait. I traded the dance studio for the written word. I fashioned my own choreography with words on the page. I wrote to heal, to find the lightness, to uncover the positive in the seemingly dark world of chronic illness. I was determined to find a way to continue on the creative path I had chosen. I knew it was possible, because many before me, with health challenges far more difficult than my own, had reconstructed their own world – it was only logical that I could, and should, follow suit. Words empowered me, and motivated me to build a new world for myself; they opened doors to new opportunities, and in the midst of it all I connected with others that encouraged and inspired me.
I wrote about how my body changed, how I felt from day to day, the things I gave up – but mainly I focussed on the things I could still do.
I didn’t know the world was listening. I didn’t really understand the concept of a worldwide web, until one day I noticed people from all over the world had come to visit a little piece of my life. I received invitations to participate in talks at the local university, I was asked to give my voice to articles and guest blogs, and I shared my story on video at a fundraiser for arthritis research. I was flown out to a blogger’s event to brainstorm new ideas to educate people about arthritis, and how to live a fulfilling life in spite of it. RA had pushed me to follow a hidden dream sooner than planned.
All I wanted was to live life on my own terms.
And somehow, in the midst of all that, I found myself an advocate of living with RA. I recognized my limitations and wasn’t frustrated by them. I was grateful for all the things I could still do. I sought out the positive in each negative; I took charge, recognized my new limitations, understood how to push a little more beyond my boundaries, learned from my failures and always celebrated my victories. My accomplishments in the face of RA belong to everyone. My advocacy life continues to inspire me. It’s become more than just about living life with arthritis. It’s about living the best life I can – within and beyond the fringes of my disease.
