Textling #103

A tribute to

Mag Friel

5.

And now let’s talk about rage. We have seen too many notices about M.E.-related deaths & suicides. These are not ‘tragic’ losses, they are shameful!

To most of the world, Mag, and thousands like her – bed-bound, in constant pain, with a catalogue of spreading and ever more debilitating symptoms – do not exist. Mag had severe M.E. for 25 years! Imagine what could have been achieved if research had not been impeded by the ‘it’s all in your head brigade’. Years, even decades of unmediated, unattended suffering, can drive a person to that last desperate step. It is appalling that these conditions persist. We need a radical change in attitudes and substantial funding for long overdue biomedical research, now!

I mourn the life Mag could have led. The lives we’re all missing out on.

Our friend has gone. Hope had expired, and the fight in her was done.
We are bereft.

 

Audio when I can

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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!”

 

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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.

 

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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.

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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.

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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?

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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.

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