Textling #88

Some days the phrase ‘you’re just not good enough’ is all pervasive. It’s the shape accrued frustration takes, a crust, or coat, too tight to wriggle out of. Doubt thrives on silence (the chronic, polyester kind); when radio is the only voice you pluck the air for adjuration. And there she waits, your girdled guide, smacks bloodless lips and drools disdain: your art, your writing; your sleep, your rising; your ability to connect, converse, consider; your quests for energy and cure; upswing of any sort – whatever you try is veined with lack.

Red letter days are those with room for conversation. You gush in half-remembered, rampant tongues; hush falls before the need is gone. Just time to carve an ear into the ground, and while fatigue declares she’s won another round, the joys you stumbled on fan out in quiet jubilation.

Audio

Textling #85

One for the dictionary! When you’re just about ‘well’ enough to try again:

Textling #84

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?

Textling #80

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!

Textling #78

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

Textling #77

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!

Textling #76

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.

Textling #75

The fall was steep, pain so fierce it almost purged me of relation. In its throes for days, nerves afire skull to toes. Then the process of emerging, trying to remember, searching for elation. Fatigue’s blunt fangs sunk deep into my hide, like calcified negation. Soon as I could I sorted shards of shared delight, sent cards, frogmarched words across the pillow till they lined up (kind of) right. Drive seems strongest when abjection worst.

Still, call me lucky! A friend is bed-bound, cannot bear the light I thrive on, and has not left her room in years. I round up exultations, crazy greedy for more.

Textling #74

Last Tuesday I was out, for pleasure. First time since the book launch in November; already dreaming of more… Went with friends to Dulwich Picture Gallery – Vanessa Bell’s paintings called out to me. Favourite jeans on (flared), and riding a grin; or else a wheelchair pushed by stronger arms than mine. No coffee afterwards, no sideways glances; all energy assigned and labelled ‘art’. Beautiful portraits there, abstraction too, collages; vibrant, discerning work. Always learning, I think, trying out. Books feature – people read, which I loved especially (long to myself, so much). Good to know: DPG is well-equipped for rest, and dotted with divans. Very comfy indeed (says one who often lies on floors), in dark emerald green – most becoming with my orange blanket. No protests when I lay. Soles did not touch, I swear.

The painting I wish home with me gives an intimate glimpse of Virginia Woolf (Bell’s younger sister), looking worn, held in an armchair’s warm embrace. She’s got a piece of knitting in her lap, red as the flesh of water melon. Her hands seem caught in hesitation. I’d like to look at her every day.

Textling #72

I have a weekly appointment with highly time-limited, semi-supine exuberance, then duly plunge into days of crushing disconnect, with a dizzying dose of pain. Call it the Jack in the box effect. I count my blessings though, assiduously – for many the lid stays shut.