Author’s note: Myalgic Encephalomyelitis (M.E.) is a neuro-immune disease which leads to a substantial loss of physical and cognitive functioning. Even minimal exertion effects a worsening of symptoms which include extreme fatigue, debilitating pain, dysautonomia, muscle spasms, light and noise sensitivity, memory loss, reduced speech, to name a few. Worldwide around 17 million people, adults and children, suffer from M.E. and lead much diminished lives. More than four million lie confined in darkened rooms because they have an illness which, for decades classified as psychological, has lacked the boon of biomedical research. If we arranged their mattresses in file they’d make a bluish vein from Britain to Siberia, but they, as things stand, remain invisible.
Attitudes are slowly starting to change, but hope for realistic treatment options, never mind a cure, comes on a drip-feed. Poetic prose is my way of joining the many vibrant voices that challenge the neglect, even disparagement of people with M.E. and demand investment in biomedical research.
Imagine the most hushed, unrushed procession possible, flocks of people with severe M.E. filling the streets on berths, bunks, beds, futons, beanbags, sofas, wheelchairs — crash pads all, running on dreams and discipline. Tens, hundreds, thousands, and those who cannot leave the rooms they lie in, there with their walls around them, curtains drawn. Housebound, occasionally out; bathed, unwashed, half-dressed, PJ’s or Sunday best; some with bedpans or commodes, some with feeding tubes; speaking, humming, silent, eyes closed, eyes wide — all of us.
No drums beaten, nor banners waved. Instead see our bidding magnified on bedclothes, headboards, eiderdowns, and, if the sun is out, scrawled all over the big blue: urging serious commitment to medical research, increased support, and being heard.
We’re too tired for a riot, and only up to rallying sighs. But a simmering rage is in the air — no more waiting!
Marion Michell is a London-based visual artist and writer, who has had M.E. for 18 years. For a while, she created in the supine. Ever since worsening health drained function from clever hands, she’s poured her art into writing. Her book, Supinely Sublimely: Selected Prose, was published by Palewell Press in December 2016.