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:
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.
Pure pleasure trip one morning, to café down the road. Crept out through crack in clock face. Wheelchair pushed by bubbly befriender; trundling from pothole to pothole. Forgot to touch peeling bark of silver birch on former totter fringe, let garden views flit by. Beeline while upright… Made outside corner mine, head propped on purple cushion. Fleeting acquaintance with strawberry tart, crumbs licked off finger-tip, custard trickle. In no time at all talk travelled far and further, salut, dommage, güle güle. Homeward bound stopped to chat with neighbour only ever waved at when bundled into car on way to hospital. A few minutes of banter, laughter. Bed after.
Suddenly a third illness looms, and I am scared and unsettled in strange, contrary ways, hoping for and dreading yet another diagnosis. Time for a professional disease (not this preposterous amateur affliction); a new label, steel blue, rule book cool, with proper treatment options, and above all else: one where fatigue is a side show and not the centre, the crummy sun around which all of life revolves.
The doctor treats my need to lie down half way through consultations as an eccentricity – my own fault, I did ride in on a steed called Rolling Pin, without a saddle. She repeats over several appointments ‘I am sure it is nothing’; another finds the scan alarming. I want it to be nothing (lest something turns out to be life-shortening), I want it to be something (lest nothing means more of the same). I am pathetically, perversely torn, as if I considered wishing a genuine source of influence. What if #3 were the sister who moves to Moscow after all and pulls her hapless siblings in her trail; the blazer who, sickle in hand, cuts paths through medical undergrowth, carves gates in walls, marches ahead with go-getting, new sight-setting good sense? What if she falters, sprawls with the other two on a bed that is much too small?