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!

https://wordgathering.com/vol13/issue4/poetry/michell/

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.