I was defined by my diagnoses. Now I’m redefining what it means to live and work with chronic illness.
I was written off as broken, for no one had seen someone so ill survive.
I was scared and redundant, complicit in the belief that my physical limitations limited my possibilities as a person.
I’m creating a world that works with my strengths. And makes them stronger.
I used to use a wheelchair and I still do. This is not a miracle cure story. It is a story of liberation.
That liberation is my happy ending…and a magical beginning.
I’m sharing that story with you.
I was 18 years old. Sunburned, running around in Kent, tying down guy ropes, feeding chickens and doing yoga on fresh, damp grass before the sun rose. It was idyllic and wonderful. And unbeknownst to me, something was happening inside my body that would change it all.
I had a fever. I slept for days, then weeks. I was a mass of delirium, flushed cheeks, dark eyes and tangled burning limbs. Somehow, I made it to my mother’s house where I couldn’t even get to bed; I collapsed on the drawing room sofa and stayed there. Things did not improve. One morning, I found I couldn’t stand. I simply, suddenly crumpled to the floor. Startled by the unfamiliar instability of my body. I became fluid, lambent, fearful.
I imagined that somehow, during my 18th summer, through those glorious long, blue-sky days and carefree, beautiful sunrises, I had overdosed on light. That I had absorbed all of its glorious power and it had expanded until my body could no longer hold me.
Later, of course, there were medical tests, tears and what felt like a very, very long winter. I prepared to tend my garden, brush up on my Greek to read the classics and pray very hard not to die young.
I fell into a sort of numb slumber.
It took years, but I did re-awaken again. I came back to life and all it took was one decision: to reclaim my own potential. To believe in my own possibility. In my power.
I had allowed the doctors to take that away. (Hearing “no cure” is a pronouncement that sticks with you).
But when I gave myself permission to believe in what could be, my body surged forward, my doubt melted away and all my prayers to be of service came true.
I decided to take 6 months between my BA and MA to create the best possible environment in which to heal.
I made a list of every healing activity I could think of: lists, books, sticky notes. Lots of red pen and long references to The Lancet . I began implementing the actions that would make the most difference in my life.
I sought out the best professionals in every field. Years of academic work and activism were brought to bear in search of my wellness.
There was nothing I wouldn’t do.
At the beginning of my re-awakening journey, my memory loss was severe. Whole days were erased. I forgot how to read and write. I couldn’t spell my own name. I photographed all of my daily moments because I wanted proof that I had lived them after the recollections had vanished.
It was difficult. Long. Tiring. Painstaking. But it was also completely, utterly empowering.
The miracles kept pace with my hope, and the healing built upon itself and formed new revelations. I went from being stuck and struggling to happy and well. I have grown into myself and I am shining the light onward and outward.
From living on minimal benefits, with lots of fear (and little heat!) today, I’m a wellness teacher. I own two companies. I have taken my dreams and made them a reality. I’m embarking on adventures I never thought possible.
This community – the one you and I created – believed in me when the doctors and decision makers did not. Together, we created our own possibilities.
Now I’m paying that belief forward: I teach other women to relegate their disabilities and challenges to the footnotes and live their own adventure stories. Because true trailblazers don’t just make room for their own freedom – they forge forward lifting a torch for others to find their freedom – their possibilities – too.
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