I’m taking a Textling-break, friends. Feel in need of an incremental change at least while this blasted illness rumbles on. Have started a new project, a series of short poems called Humbles. Want to play a little more, experiment. Each Humble zooms in on and distils one aspect of a day. A way of marking (tired) time lest it slips away unattended. Hope to achieve a form of creative consistency as well. M.E. will feature, but also broader themes.
This is my favourite so far (my grieving visual artist self perked up!). Most aren’t as elaborate though. Just a couple of lines at times, or one word with letters settling for a rest, yet eager to be heard.
Will try to post daily (or whenever energy allows) on Facebook and Instagram. You can also find me on Twitter. Keep in touch?
Mag plucked reasons to be thankful from egregious days. I mean to follow suit, shall practise gratitude conscientiously. This morning’s list, to linger over (note to self!), details eased loose from concertina folds of anxious mind: hearing the voices of my family, over the telephone, means so much; writing when hope and mettle need retouching; ferocious skull-pain dulling; a meditation buddy; chums who keep in touch; Meryl, my sparkle-hearted carer, humming while she works; the taste of cauliflower, oven-baked, bedecked with turmeric; knowing Mag, for a little while; and, these last few weeks, scattered yet finely tuned exchanges with two #BedFest friends, one old, one new, who seem to see me from their bedsteads on another continent. Kandice, Kendrick, thank you. Here’s looking at you too!
Audio when I can
Hospital, for xyz test. First patient, quiet affair. After, quick dip into coffee shop. Rudolph’s clogged jelly nose quivers on chocolate log. Take a jiggle over a jingle any time! On way home first surge of pain, sudden, as if flicked by a switch. Next few hours, midst deepening fatigue, it fans out and intensifies, until verily, verily, if you could speak you’d swear on King Lear’s life that you crashed down those castle stairs and hit every cobblestone, turret to potter’s field. Each bone clangs to a different tune. Soon you’re all but brittled out, a fractured creature, with gigantic, useless claws (they hurt till last). Something Giacometti might have cast in bronze, cool and cruel.
Abjection. No inner sense of ‘us’, no reach, no touch. PEM doesn’t sound like much.
One for the dictionary! When you’re just about ‘well’ enough to try again:
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!
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!