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.
One for the dictionary! When you’re just about ‘well’ enough to try again:
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?
In bed (not on) long before evening falls; still bright outside, not nearly night. Like most, or all, I waited for the light of spring, green shoots, raw splendour to refute earth’s plight, yours, mine. Yet now that days step up their game, I find that spring does not reside in me, take hold, drive buds and blossoms. Or not the kind I hope for.
A roll call by the weathervane finds selfsames skittered out the door. Just words now: artist, maker, reader, earner, sleeper, walker, failed lover, lucky friend… One with steady hands, one who remembered, one who talked a mile a minute hours on end and savoured silence. So earnest, so keen to do things right, with a propensity for shame. I wish I’d worried less, been bolder.
At sunrise: Take me to the warden, for a slice of day, a pound of night!
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!
Skin a pilfered, painful thing, clearly not mine as much too tight. No touching! No budging either, utterly depleted, and yet so wired I might stretch and pull the sky down for a wrestling match. Senses rule in radar mode. Day shines too bright. Odours breed and multiply. Worst: ears catch at sounds rapaciously. The world plays trumpet in my bed; birds toot their tremolos, the rowdy lot. I hear a thousand sirens growl – their manes are shorn! My say-so: no chance to heed their clown-mouthed calls when all I need is rest.
Carer knows: no hoovering in vicinity. The cutlery drawer is the enemy. Oh the din! Leg, wing, fin – how can I get away? Auricle just wouldn’t say.