ManifestM.E.

I was thinking of my friend Mag Friel when I wrote these lines last year. To most of the world, she, and thousands like her who suffer(ed) from severe M.E. – bed-bound, in constant pain, with a catalogue of spreading and ever more debilitating symptoms – do not exist. Let us change that.

I will be tweeting the flyer from @2tired2riot today, #ManifestME – please share.

#MEAwarenessDay #MillionsMissing #CanyouseeMEnow

Audio (only of the flyer I’m afraid)

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Textling #102

A tribute to

Mag Friel

4.

Mag’s funeral service was a wonder. We had two months to organise in customary slow-motion; carers did the running. Mag’s favourite songs were traced, hymns she loved, psalms, poems. Two old friends, met during their stay at the CFS/M.E. Unit at Oldchurch Hospital, Romford, in 2004 (long since closed), were kept abreast and shared their memories. Still severely ill, they perhaps understand most closely what Mag went through and how she could have reached that point beyond endurance.

Order of Service, lyrics, CDs, were posted in advance to those too sick to come. We have all felt wretched when missing pivotal events, and hoped – this time – to infuse the dreaded ‘there in spirit’ with a dose of lifeblood.

Robin song, which Mag adored, filled the church as people arrived, most from the support group whose gatherings she had never been able to join. There were chairs, four-legged and wheeled, recliners, and mats on the floor for lying down. Only an elderly couple had known our friend in blooming health, neighbours since she had bought a battered house and set to doing it up, by herself. In the end she lived in a hospital bed in a darkened room on its ground floor, unable to tolerate a hug, or being washed, because she hurt so much.

The vicar, who, years ago, had visited to give her communion, poignantly interwove the service with testimonies from friends, reading for people who could not attend. The depth of love for Mag was palpable.

The last tune played was the Archers’ theme, and here we smiled. Mag’s final words to us: “See you on the other side!”

 

Audio when I can

Textling #101

A tribute to

Mag Friel

3.

I know hardly anything of Mag’s life before she fell ill in 1993. We were witnesses to each other’s ‘now’. There are clues though: when I sent our shoes to the #MillionsMissing protest, Mag selected a pair of dainty black Velours stiletto heels with pointed toes. Imagine her staccato gait – upright and stable! Last year, while Cannes was in the news, she wrote: “May 1991 sailed to Cannes on my partner’s yacht, hoping to complete on 5 million film deal we’d worked on for 4 years. May 2017 achieved my goal of having bed sheet changed, first time in months. Heaven. Happy ME Awareness Day. Love and eternal hope for us all. xxxxxx”

Memories of who we were before M.E. seem almost fanciful when we need all our energy to make do. Mag’s fortitude was striking. Her life shrank to the very basics of survival, and still she rifled through day’s pockets for wee pleasures.

The lack of funding for biomedical research and the disparagement of the M.E.-community enraged her. She faced complacent institutions and their indifferent, even contemptuous representatives with unceasing anxiety, and was let down in countless ways. Two beloved long-term care-givers worked hard to balance the scale and tended to Mag’s needs with boundless empathy and precision. Their insight into M.E., learned on the job, does them proud. If only it were easily transferable. If only people wanted to know.

 

Audio when I can

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’ve never set foot in. 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 #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 #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