Mag plucked reasons to be thankful from egregious days. I mean to follow suit, shall practise gratitude conscientiously. This morning’s list, to linger over (note to self!), details eased loose from concertina folds of anxious mind: hearing the voices of my family, over the telephone, means so much; writing when hope and mettle need retouching; ferocious skull-pain dulling; a meditation buddy; chums who keep in touch; Meryl, my sparkle-hearted carer, humming while she works; the taste of cauliflower, oven-baked, bedecked with turmeric; knowing Mag, for a little while; and, these last few weeks, scattered yet finely tuned exchanges with two #BedFest friends, one old, one new, who seem to see me from their bedsteads on another continent. Kandice, Kendrick, thank you. Here’s looking at you too!
Audio when I can
Those times when you’re feeling too much and speech gets lost in the folds of fatigue. When you’re feeling too much and can’t call a friend, or stomp it off, or sit in a park and stare through trees. When you’d trudge to the corner shop, if you could, hoard jam rolls and wine for crying; or stand rounds at a pub you’ve never set foot in. You’d dunk morsels of breaded past in each glass, shout ‘keep them coming!’; fall asleep in a book you found on a bench, still between billowing lines. First light you’d take a knife to the bedroom wall, carve a way to a sun-lit now. You’d climb every belfry in town to roar down from, or, should all fail, wave a white flag, with her name on.
When a friend dies, too much is just not enough.
Credible year, the sweet with the rough. Downward slope chez moi, but:
Heard (and spoke) poetry twice; lay in grass by last unshorn lavender field. Talked more, picked up the tab with huffs and puffs. Horrified by politics of separation. What? Who? Forgone collusion. Grateful for #MeToo, #BlackLivesMatter, intersectionality. Time for self-examination.
Summer, garden birds fled building noise; light impaled on dirty window pane. Wanderer squatted in cherry tree, her antlers tickle when she kisses me. Oh, let me swoon a little! Saw my mother – mutual solicitude revived. No books, although bought a few; no gazing up at sequined sky. I fall long before night.
Treat of purple trouser suit. Next year will droop in style. Winter now. If I stay still, why doesn’t time?
Nothing of me that did not fade. Head down from cloud with blades in hair. Limbs barbed with pain. Hands crudely carved and not plugged in. Eyes sport a coat of Vaseline. Memory is holed up in a bur.
Flame-throwing skirt adjusts to clothes rail smoulder-mode. Harangues the tired one in viperous tones. Call this vernacular? If ears could bolt…
Practice run for bigger things? Naaaa. Made the most? Ta. Tiny though, and all ties cut.
As often as mind has room I fume a failproof lookalike who strolls about town. Oh, the places she has seen! Priceless when fancy factualises for a wisp of time. A caper on my scooter – first in a year, or two. Almost called out – look at me! – like a child riding her bike without stabilisers on. Hung a while on armchair at the bookshop twenty doors from mine, tried a little conversation. Turns out a semblance of normality is quite a strain.
In a matter of minutes home and supine again. Slept in clothes that night, entwined with spectre. Days later the idea of a repeat seems preposterous, but: elsewhere was achieved, momentarily. Blue plaque please?
M.E. Awareness Day! #MillionsMissing Round Three. Made a card and sent to friends and comrades-in-harm. Would like to do an air drop or a snail-mail post-out to all those who cannot leave their bed, their room, their house; who feel invisible, discounted, cast aside, and can but lie in wait for better times.
(Dedicated to Mag F., who is severely ill and still my rock.)
© Marion Michell
The time has come for #BedFest – a worldwide hashtagged festival of art, music, poetry, performance and multifarious creativity by people living with (severe) M.E. Voices that are seldom heard, people who are rarely in the world, called forth and gathered by #MEAction and its volunteers. Let’s escalate M.E. Awareness!
I am so moved by people’s bios, their guts, their drive, their sense of beauty, and the vulnerability they dare here. Teachers, engineers, pilots, artists, students, nurses, social workers, and an opera singer; kids, teens, adults of all ages; mothers, fathers, lovers, friends; people who led active lives, worked, grew, hiked, carried shopping, played the bagpipes.
We’re not desperate because we’re ill (hard as it is), we’re desperate because we’re still waiting for the clear and unequivocal recognition of M.E. as a physical disease, for proper funding of biomedical research, and, often enough, simply to be listened to. That we need a campaign like #BelieveME in 2017 is shameful.
Can’t wait to see my iPad screen light up with shared imagination. We’re upright in all but body!