A new friend told me I should learn to surf. An old friend told me I shouldn’t let the doctors get to me. An acquaintance asked me if I’d considered changing my diet. A perfect stranger says ’take every opportunity while you’re young and healthy!’. A close friend tells me there’ll be time to sleep tomorrow.
They say now is my time. They say I’m young, carefree. They say run anyway! Hike anyway! They say screw them and their diagnoses and all that medical quackery. They don’t know you! Take a chance! Say yes! Just do it!
I feel myself recoiling inwards with every well-intentioned command, red hot pokers camouflaging the reality of the bumpy surgical scars layered across my skin.
Am I making it up? Can I just do it all anyway? My brain replies no, this life of mine is real. The pit in my stomach questions my rationality.
What I wouldn’t give to paddle into those waves, to run through that grass, to sweep my bow across the strings of my cello. If changing my diet would fix me, I would do it without question. Learning to sleep has been one of the hardest lessons of my life.
Every so often, I find myself mourning the person I could have been, if only it weren’t for this heaviness weighing me down – three words. Two names and a category. An acronym. EDS.
I think perhaps I would have been an explorer. An adventurer boldly crashing through barriers. I think I would have been always full of joy & light, a slightly taller replication of my 14-year old self. I think I would have said ‘yes!’ and ‘why not?’ even more than I already do. I think I would have been a free spirit, forever amidst nature. I think I would have travelled through South East Asia instead of Europe, I think I would have driven a motorbike, ridden a skateboard, been held under by crashing waves, gotten lost in jungles and forests, danced into the night every night, sleeping only when my eyes could stay open no longer and my body was crumbling beneath me…
I think I would tell people like me to just do it. Learn to surf. Follow your passion. Take every opportunity while you’re young and healthy. Sleep tomorrow.
I think this pain in my knees, the wonky bones digging into soft flesh across my back, the grating of nerves down my arm every time I dance, have given me the gift of empathy.
I think I wouldn’t be me if it weren’t for that empathy.
I wonder if perhaps this heaviness weighing me down is in fact one of life’s most well-disguised gifts.
Portrait taken by the inordinately wonderful Izzy Dempsey
[Updated 29 July 2017]