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.
Credible year, the sweet with the rough. Downward slope chez moi, but:
Heard (and spoke) poetry twice; lay in grass by last unshorn lavender field. Talked more, picked up the tab with huffs and puffs. Horrified by politics of separation. What? Who? Forgone collusion. Grateful for #MeToo, #BlackLivesMatter, intersectionality. Time for self-examination.
Summer, garden birds fled building noise; light impaled on dirty window pane. Wanderer squatted in cherry tree, her antlers tickle when she kisses me. Oh, let me swoon a little! Saw my mother – mutual solicitude revived. No books, although bought a few; no gazing up at sequined sky. I fall long before night.
Treat of purple trouser suit. Next year will droop in style. Winter now. If I stay still, why doesn’t time?
The failure of Norway’s Rituximab trial is hard to process. Hope is back in the cold room, carcass stripped. Meagre enough to start with, it owes the scant flesh on its bones to the slog of tireless advocates. And now that Unrest is out, mainstream media are taking note. Attitudes may change. Drug treatment options are years away though, and, due to the widely discredited long-term focus on psychological causes, already decades late.
Let me reiterate: Worldwide around 17 million people, adults and children, suffer from M.E. and lead much diminished lives. More than four million lie confined in darkened rooms because they have an illness which has long lacked the boon of biomedical research. If we arranged their mattresses in file they’d make a bluish vein from Britain to Siberia. When a cure is finally found we’ll have the perfect somersault lane.
The Rituximab trial has failed. I am gutted. And so very very tired.
Nothing of me that did not fade. Head down from cloud with blades in hair. Limbs barbed with pain. Hands crudely carved and not plugged in. Eyes sport a coat of Vaseline. Memory is holed up in a bur.
Flame-throwing skirt adjusts to clothes rail smoulder-mode. Harangues the tired one in viperous tones. Call this vernacular? If ears could bolt…
Practice run for bigger things? Naaaa. Made the most? Ta. Tiny though, and all ties cut.
Clothes were chosen for horizontal zing (a sofa awaited); colours for luck, bottom up: red, yellow, purple, petrol blue. Textlings and fervour too shone in vivid hues. Whenever I’m out (usually escorted by one of the lovely M.s), I push presence to the hilt. The ship is sinking! This old salt has half a spell’s grace and will return to ghostliness; not nailed to the mast though, just to the mattress until further notice.
I’d long looked forward to Palewell Press Mini Book Fest – a rare opportunity to read my work, to meet and listen to other poets. Fatigue left slivers of recall only, instants illuminated as if a match had been struck in the dark, of a bard’s wide gestures, arcanely numbered verse, poems spoken for an absent author, a little conversation. I know I was happy. Delights were shared.
In the evening, head brimming with naught, I heard fireworks. Guy Fawkes Night. Body was churning with pain. In the unlit room my yellow skirt glowed like a flame.
I wrote a brief essay on Chronic Illness and Confidence for the Chronic Illness Inclusion Project. For text and audio please click here.
No easy way to travel on your own when you’re at your best lying down, can’t propel yourself in a wheelchair, and struggle to keep compos mentishood and speech in reach. Fatigue-induced pain-levels may swing skyward first. Motivation is strong though as it’s more than two years since you last saw your mum. When you finally crawl away from TB and its treatment woes you plan, prepare, hope.
Terrified until the journey starts, you give yourself over to being conveyed by an array of strangers: driven, flown, rolled, even carried, and when parked in transit (far from the loo, just as well you’re without water) do not think beyond the next incremental task. You have a Zen master side! And a pocket full of cards detailing symptoms of POTS and M.E., and some of your immediate needs, should words fail you.
Popping grapes on parched tongue turns into ambrosian spectacle. During the flight you’ll slump across two seats (you paid for the privilege). At the airport you sit, slouch, hang, curl on a blanket on the floor, ready for another member of the relay-team. It’s an exercise in trust. Staff, on long shifts and underpaid, attend with grace and generosity. You radiate gratitude at every stage. The house you grew up in awaits.
For two weeks you spend much of your time in bed, eyes closed, but you and mother (who is elderly and now has to look after you) have gentle afternoons together, chatting as long as energy holds. So good. Wish everybody could.
“The demise of my ability to read extensively is one of my greatest losses. I try, but pages petrify. A few paragraphs must do me now; some days a couple of lines. It’s an issue many #pwme wrestle with, and contributes to our sense of separation.”
So begins a short article I wrote for #MEAction last week. I produced an audio-version as well and have decided to start recording my textlings to make them more accessible. I write as much for the ear as the eye, and have longed to make my scribbling useful. Advocacy (with a small ‘a’), and good practice for my voice (when able) as I don’t have much occasion for speech.
READING MATTERS. LET’S HEAR IT!
text and audio
WE’RE UPRIGHT IN ALL BUT BODY
text and audio