A milestone to report, minor, momentous: one evening last week I was able to watch – wait for it – half of Channel 4 News. In the living room. At 7 pm! Usually my paltry energies clock out late afternoon, but for once I was not in bed, far from sleep yet eyes ramming shutters down and ears sucking on radio dials like a babe on mother world’s breast. So: a mile pebble. A yard, inch, meter, thousand leagues mite, not repeated since, alas, but hope floods in through the tiniest of cracks.
And rushes out through great man-made gashes: the news that day concerned the fire at Grenfell Tower. The horrendous death toll (still rising) explodes my brain because, in the wider scheme of things, fire safety costs copper coins. How did we come to allow such contempt for people to reign decision-making? What if such callous denial of really very basic care becomes the norm? Words matter: social – once ethical, inclusive, humane, suddenly has a demeaning slant. We must reclaim it. We can never get over this.
First sight this morning: a lip of light around drawn blinds. Open window, lasso out to catch at clouds, at words: bath, read, write.
Former self was dawn’s creature, bickered with the birds and figured minutes might be hours might be days. Nor did she count. Books in bed, predating; once upon a time we wolfed them down, nary a nibble now. Brain is trussed with ticker tape, its constant crackle wearies. We read, we try, and pages petrify – headstones where doors swung wide.
When we’re the slightest bit awake we ache with hunger, lust for learning, visit sentences we loved, were bruised by, hoping they’ll return us to abandoned worlds. Marks in pencil, thumbnail scratches, coloured tails to pull a kite down. We meet “ein rotes Wort coming the other way.” * We wait, fangs filed.
* Anne Carson
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!
New claim to fame: moving from bed to front-room floor most afternoons, placing my head where the sun moons over its favourite carpet patch. For a while I follow its trajectory, face turning this way, that, lapping up light as if posing for a sluggard’s role in a film I’ll never see. It’s a regular in-door roam, and now I’m filled with wishing: garden (I do swing by occasionally), gallery, bookshop, ocean, mountain-top.
When you’re supine behind is under, and in front above. I want up up up.
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!