Textling #100

A tribute to

Mag Friel

2.

Mag’s capacity for deep communion, care, and laughter in the midst of hardship was immense. She stayed in touch with friends through fantastically abbreviated text messages. Notes written on kitchen roll were precious. Even more so the occasional voice recording – words barely louder than a breath. Her inner liveliness, her fierce intelligence, her willpower, her curiosity and wit, shone through her arduous, yet often joyful utterances.

She craved visits, but could seldom manage them. Even minutes spent in silence by her bedside left her depleted and worsened symptoms for weeks. What a fight it was to be alive! I don’t know how Mag endured. Her faith certainly sustained her. In our local M.E. group she was known as a prayer warrior who would plead for you or a loved one. People who had never met her were moved by her generosity of spirit, her desire to be part of a community, to be of use. I felt more supported by her than anyone else.

To her great distress Mag lost the ability to text, although messages were still read out to her. Unable to communicate with the outside world, without hope for reprieve from constant agony, as experienced by so many patients with severe M.E. who suffer mostly out of sight, Mag took that final step.

We are all diminished by her loss. Missing her has only just begun.

 

Audio when I can

Textling #99

A tribute to

Mag Friel
10 October 1953 – 31 December 2017

1.

We never cooked a meal together, linked arms, kicked autumn leaves on Peckham’s streets; never walked along the Seine, crossed Brooklyn Bridge, took train, bus, boat wherever; never dipped toes into the freezing sea in January or any other month; never talked all night, never cried together, although we often felt we might; never heard each other laugh, though laugh we did, out loud, almost in unison. At our best we made up stories, travelled North, South, East, West (to Ambridge too), sent messages from bedstead, sofa, blanket on the floor; shared desperate times, hers always so much worse than mine, and small delights, until the short supply of hope ran out and there was naught, zilch, nothing left for Mag but the brute force of M.E. in its severest form – fatigue that totally incapacitates and isolates, and leaves the sufferer with increasingly uncontainable symptoms and atrocious physical pain 24/7, in a room with curtains permanently closed.

For years Mag lived life on the point of a needle.

She took her life on 31 December 2017.

 

Audio

Textling #98

Those times when you’re feeling too much and speech gets lost in the folds of fatigue. When you’re feeling too much and can’t call a friend, or stomp it off, or sit in a park and stare through trees. When you’d trudge to the corner shop, if you could, hoard jam rolls and wine for crying; or stand rounds at a pub you normally fly by. You’d dunk morsels of breaded past in each glass, shout ‘keep them coming!’; fall asleep in a book you found on a bench, still between billowing lines. First light you’d take a knife to the bedroom wall, carve a way to a sun-lit now. You’d climb every belfry in town to roar down from, or, should all fail, wave a white flag, with her name on.

When a friend dies, too much is just not enough.

Audio

Textling #97

The best possible Xmas-break to everyone, and warm greetings to those who are housebound, bed-bound, or simply all-round struggling; to just-at-this-moment 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. Let no one be excluded.

May your day be filled with care, joy, and – if that’s what you crave – festive connection.

Audio

 

Textling #96

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.

Audio

Textling #95

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?

Audio

Textling #94

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.

Audio

Textling #93

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.

Audio

Textling #92

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.

Audio

I wrote a brief essay on Chronic Illness and Confidence for the Chronic Illness Inclusion Project. For text and audio please click here.

Textling #91

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.

Audio