Some days fatigue holds outright sway, claims hands and eyes, drains space and time of meaning. Breathing becomes a chore. You’re all body! If brain has room, the beauty of a sentence soothes, but sounds intrude (and pierce your skull), and when you smell your unwashed self, you almost wish your senses dulled. Will night fall soon? Tomorrow might be better. If sleep’s your friend…
Here’s what’s alive in you right now: Pain leads a ticker tape parade through head and limbs, throws doubts of self about, in rainbow hues. There’s no escape.
‘How do I earn my day?’ You try to shake this question from your weary ruminations, sigh ‘Ableist notions! Danger zone!’, and – without budging – sink a little deeper.
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I press my eyes into the pale blue sheet, imagine it’s the sky that holds me. Duvet rains posies like a capsized cloud, in Frida Kahlo colours. The whole wide world is upside down!
My throat remembers ancient chants, recites in tongues long dead or colonised – until I realise: they aren’t mine to sing. I let them die.
Heart holds a galaxy of want, where crooks in politicians’ stocking masks escape responsibility for the disasters they created. We let them! Where CEOs with almost human faces worship their riches, dismantle our earth for loot, use people’s backs as stepping stones. We let them too.
Disguised as rainbow devotees, they wave their profiteering flags while others bleed, and trust pandemics will slay minorities, the poor, the sick, the elderly – but never them.
When finally they drop from stately heights into polluted seas, the rescue boats they’ve long denied despairing refugees will pass them by. Time to return the sky to stars and mountain tops, to bean stalks, birds, and atmosphere. Oh, let us breathe, and build a world where care comes first, and ‘we’ means truly everyone, and our splendid earth. We’ve got work to do!
Thought a thing.
Thought some more.
Do a thing.
Did a thing!
Phew – ding is done.
I thinged a do!
Did a do!
Thing I did, for Bethlem Gallery (4 – 8 May):
When I bought candy apple-coloured, spool-heeled shoes from money I’d received for a birthday treat, I launched a tradition of subterfuge. Last year I ordered pumps in shamrock green, decoy for bumblebees, and failed surrogates for barefoot strolls through flowering meadows.
The birthday blues is on me now, and I realise the hope I might one day walk out of this static life of mine is nearly gone. No use fanning its flickering flame with a new pair of flats… How can I still believe there’ll be wildness again, climbing of hills, scaling of coastal paths, art making, book reading, and abundant in-the-world time, when M.E. remains contested?
People with chronic illness are often told to think positive. We’re shamed when we falter. Denial won’t get us better though. Our straits are dire! With minuscule energy we advocate at whichever level we’re able. We donate from meagre incomes to fund research; educate doctors, carers, nurses, where we can. That we have to do so, on and on and on, is wearying beyond measure. Yet, in spite, and against: we keep a sleepy eye out for pleasure!
I most fervently want to write when M.E. comes close to untethering me. Those times when fatigue crashes down like a tidal wave, primal as a sea god’s wrath, and my soggy self swirls off with shoals of plastic-bellied fish. When speech runs out completely; when vision gets so vague that the parakeets outside my bedroom window look like lime-green smudges; when turning over, even breathing is a chore; and words issuing from the radio (normally the last resort) turn into gristly morsels an alien force presses down my gullet. When all I need is silent, twilit rest, and that is the hardest, loneliest best.
Writing doesn’t anchor. It’s more like wearing water wings in a thunder storm – a token gesture toward lifeblood, and connection. And a wink to beauty…
A bit of good news gave me a boost last week. My poems bond, Chronic, and Hues, appear in WORDGATHERING: A Journal of Disability Poetry and Literature. Audio-recordings are attached. Enjoy!
On better days (they are never good…), you get dressed for two, three hours. You don your velvet skirt, say: indigo blue, stitched with red, orange, yellow blooms, and sage-green stalks. Summer left a calling card! You revel in colours – as if lying ‘on’ bed, not in, required the wearing of Sunday best. No shoes though. Hardly ever shoes! And no one but your sparkle-hearted carer sees.
Stunning hues aside, the downward slope from dawn to night is hewn in stone, and you deteriorate without diversion. Fatigue’s thin mantle sports deep pockets, crammed with nausea, vertigo, blurred vision, and breathtaking lashings of pain… Worst: the steady cognitive decline, by the end of which you are all ear, yet can’t make sense of what you hear.
Occasionally, your bedroom’s prickly hush is ruffled by the wingbeat of wood pigeons ascending from the narrow garden, only to mould itself again around you, faithful to a fault.
Trips to hospital, though planned with miserly precision, sing: in-the-world time! Gracious turns from strangers elate, and continue to resonate during the gruesome weeks you’re stuck in aftermath mode.
The waiting room is huge, its ceiling several storeys high, which lends a slightly corporate air. While M. fills in forms you stretch out across a row of chairs, eyes closed to pointedly bright lights, and headphones on lest nearby drilling noises deracinate your weary self. You’re quite snug there – so much better than a blanket on the floor! – and rest easy until you’re seen.
A young nurse tends to you with almost radiant kindness, her face soft and open like a child’s. Hardly a prick when she inserts the needle! As the scanner moves, you glimpse her on the tube, where gargoyle mouths fizz bigotries. Has she learned to sit quietly, pay no heed? Will she speak? Meet people’s leery eyes? Will someone rise, sit with her, raise their voice? You hold your breath for her: five stops, three, two… Allahu Akbar. Safe soon.
These times need strongly worded wishes: May we be thoughtful and judicious in the coming year, and wary of the rule of corporations. May we stand up (even lying down) to violence and power over. May we connect with joy, and renounce populism’s lure. May we tear down walls, launch rescue boats, make people safe. May we learn to care for the earth, our beautiful abode – full speed ahead. Let us acknowledge the privilege secured through centuries of exploitation and colonialism, and finally make amends. May we delight in difference without forgetting what we share – high time we tackle racism, classism, misogyny, ableism, homo- and transphobia, with everything we’ve got. Let each and everyone have plenty to thrive on, and a place to call their home. May treatment for M.E., perhaps a cure, move within reach.
Let us make housing, food, free healthcare, meaningful, well-paid work (if able), and generous benefits (if not), art and education, everyone’s due. Love too.
We’re all citizens of this singular, magnanimous world. Let’s work together to preserve it. Happy New Year to you!
❤️ * 💛 * 💚 * 💙 * 💜 * ❤️ * 💛 * 💚 * 💙 * 💜 * ❤️ * 💛 * 💚 * 💙 * 💜 * ❤️ * 💛
It’s that time again: fraught holidays beckon, and the year will turn once more without cure or treatment for M.E. in sight. The election results feel like a bereavement. My relapse spurs its own grief. Can good wishes refresh the spirit?
The best possible Christmas-break to everyone, and warm greetings to those who are housebound, bed-bound, or simply all-round struggling; to people scraping by on wretched wages, or sleeping rough; to permanently tired folk; overlooked and disparaged folk; downhearted and hopeless folk; for-crying-out-loud-but-never-saying-much lonely folk; serene and anxious folk; juggling, striving, angry folk; mournful, quietly aspiring, boisterously desirous folk. Contented or happy too. May no one feel excluded – let’s vow to challenge prejudice and bigotry wherever we encounter it.
May your holidays be filled with care, joy, and – if that’s what you crave – festive connection. LOVE TO ALL!
❤️ * 💛 * 💚 * 💙 * 💜 * ❤️ * 💛 * 💚 * 💙 * 💜 * ❤️ * 💛 * 💚 * 💙 * 💜 * ❤️ * 💛
First visitor in five weeks and five days. Yes, I counted, in need of reassurance that the depth of my desire for face-to-face communion with a friend is fathomable.
Sadly I could hardly speak, and I’d swear my eyelids creaked like rusted door hinges. For a wee while we held hands and conversed in chopped (m)utterances. Soon my spasms became expansive, and then, as if someone had flipped a switch, pain levels surged, nausea ripened, and breathing felt as if I lay under a mound of earth. Visit over…
My head brims with imagined sociability, with poetry readings, exhibitions, picnics in parks. I travel to Paris regularly (Louise! Je viens!), and the pub I drink at on special occasions has a sofa with my name on it. In this universe care and compassion abound, and Labour wins the elections. You wouldn’t believe how much I smile.