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. A simmering rage is in the air – no more waiting!
We’re too tired for a riot, I’m afraid. And only up to rallying sighs. Lucky youse!