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!

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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 #54

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.

Textling #39

When M. and I dipped into (mentally skipped into) Hilma af Klint’s Painting the Unseen we found work created a hundred years ago, modern, radical, mysterious; rooted in the artist’s day, and, via the sixties (science and séances meet flower power), easily at home in ours. Time turns, throws slings around ideas, ever restless, ever green.

My impulse is to stop, look closely; sorrow tugs at fleeting glances. In my favourite room I lay on a bench, brimful with the potency of art. Eyes binged, as if they’d been shut in the box with rings I never wear. In poured the cycles of life, rendered in radiant colour. A polyphony of cells dividing, merging, multiplying, of blossoms, spirals, hieroglyphs. Vitality’s groundwork visualised, this side of strife, greed, power over. Whatever we may call it, life force, biology, mysticism, af Klint conjures boundless joy: life is.

When limbs, sight, mind are overwhelmed by tiredness, when I cannot do, I sometimes wonder: is being enough? No answers at the Serpentine, but a sense of fluid processes, continuous unfolding, and a realisation how much this wondrous bottom line needs tending.

Textling #38

If it weren’t for the piercing pains that plague my skull, today would pass in a blur. The purpose of limbs, throat, eyes, is clumsily drawn. Pain’s location is precise though, bull-eyed, electrified, and I, limp litter, fritter my life away.

Something is pushing through, perhaps a Zeusian creature? Let her be a juggler of words and worlds, a cosmonaut, a poet, a crocheteer, time-traveller, dawn reveler, purveyor of truth, rude, raucous, rowdy, proud fool, doubtful philosopher, dreamer of wild and dappled things, of ruckus, touch and ecstasy, courtship adviser, turncoat despiser, cloud racer, tracer of ancient mores, bread for guns-inciter, roses for knives, sybil, seeker, memory keeper, grace dispenser, falsehood sensor, kind heart to all souls, translator, vindicator, sharer, mapper, reader, connector, rebel rouser, boundary browser, maker of peace. One who speaks to all and sundry, declaims in tongues I have never heard, from rooftops, molehills, underpasses, and straight into my ear.