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. Nose-bound 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.
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.
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.
Imagine the most hushed, unrushed procession possible, flocks of people with severe M.E. filling the streets on berths, bunks, beds, futons, beanbags, sofas, wheelchairs – crash pads all, running on dreams and discipline. Tens, hundreds, thousands, and those who cannot leave the rooms they lie in, there with their walls around them, curtains drawn. Housebound, occasionally out, bathed, unwashed, half-dressed, PJ’s or Sunday best, some with bedpans or commodes, some with feeding tubes, speaking, humming, silent, eyes closed, eyes wide – all of us. No drums beaten, nor banners waved. Instead see our bidding magnified on bedclothes, headboards, eiderdowns, and, if the sun is out, scrawled all over the big blue: urging serious commitment to medical research, increased support, and being heard. A simmering rage is in the air – no more waiting!
We’re too tired for a riot, I’m afraid. And only up to rallying sighs. Lucky youse!
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.
Worst days pain ricochets like shooting stars with pinball crushes. Oh the love! Releases fiery goo when ramming rib tooth bone. Skull reels alone; body razed by frequent flyer flares, flags pushed here there, declaring consternation zones. Each smart begets another, emulates: ear equals ankle throat wrist shin, and brass bands march in new-laid grooves, playing their loudest, most discordant tunes. Strangely breasts score synchronicity, pressed hard against the faces of two grinning clocks (hands colliding, clouding time). Neither words nor image until pacified.
My ears know in their teeny bones that aural is superior to oral, after all their stamina is unsurpassed. Sometimes they like slumming it with sudden nausilicious surges. The onset of a piercing sound brings a little sick to mouth, as can any kind of sensory exertion. If I stay on the telephone a moment too long, or listen to the radio beyond the span fatigue decrees that day, an impulse to retch rises, a heave, a huff, a bit of barf, as if a glut of words were thronging down the gullet with a side of gristle. Only silence will do. From mother’s mouth a morsel flew…