I am thrilled with the M.E. Awareness time of year turnout. Everyone's at it in their own way. (Signs wrote something beautiful, NMJ has fantastic news, Digitalesse was refreshing, tumblyday was out in the real world, other links here compiled by RachelCreative.)
This week I can't help but think about the beginning. I remember being eighteen, sitting across from my then-doctor's wooden desk. He was a family friend, and reminded me of my father in his kindly zest, the way his curly hair strayed to the wild side and maybe he wore an earring, maybe he didn't.
I'd been in bed for six months, there'd been tests, specialists, a diagnosis. He held a pen from a pharmaceutical company, looked over in the general direction of the town lily-ponds, and told me there was no cure. While startling, it wasn't a tragic moment. 'No cure' meant nothing to me, I went into instant denial and stayed there for a decade. I was brimful of hope and optimism. I thought that for me there would be an end. I was sure of it. Everyone has an inherent faith in their own specialness, that they should get special consideration from fate, and I was no different.
I had no conception that the new mist that filled my brain, the overwhelming weakness, the burning pain, the crushing consequences of any activity, that they would all become prickly and permanent companions. That I'd not return to uni, or my job waitressing at the local cafe. That I was on the boat to an underworld of disdain from many in the medical profession and general bewilderment from everyone else.
But this is not about me. There are millions of people all over the world who've had this beginning. And no end.
We millions, and loved ones of millions, this week's a time to make a ruckus. Or even just a little fairy whisper if you can muster it. I'm on the edge of that place where children of my own, finishing a degree, financial independence, a job, owning a home; they're all unlikely features of my future. But I hope that during my lifetime I will see change: proper funding for good biomedical research, effective treatments, a diagnostic test, better awareness. If not for me, then for the others who come after me, with their own beginnings.
Hope comes to mean something new, something small, something kept under a pillow and touched daily. I still have it.
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