Textling #106

I’m taking a Textling-break, friends. Feel in need of an incremental change at least while this blasted illness rumbles on. Have started a new project, a series of short poems called Humbles. Want to play a little more, experiment. Each Humble zooms in on and distils one aspect of a day. A way of marking (tired) time lest it slips away unattended. Hope to achieve a form of creative consistency as well. M.E. will feature, but also broader themes.

This is my favourite so far (my grieving visual artist self perked up!). Most aren’t as elaborate though. Just a couple of lines at times, or one word with letters settling for a rest, yet eager to be heard.

Trying to post daily for a month, on Facebook and Instagram. You can also find me on Twitter. Keep in touch?

Twitter @marjojo2004
Instagram marjojo2017
Facebook marion.michell.3

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Textling #105

Mag plucked reasons to be thankful from egregious days. I mean to follow suit, shall practise gratitude conscientiously. This morning’s list, to linger over (note to self!), details eased loose from concertina folds of anxious mind: hearing the voices of my family, over the telephone, means so much; writing when hope and mettle need retouching; ferocious skull-pain dulling; a meditation buddy; chums who keep in touch; Meryl, my sparkle-hearted carer, humming while she works; the taste of cauliflower, oven-baked, bedecked with turmeric; knowing Mag, for a little while; and, these last few weeks, scattered yet finely tuned exchanges with two #BedFest friends, one old, one new, who seem to see me from their bedsteads on another continent. Kandice, Kendrick, thank you. Here’s looking at you too!

 

Audio when I can

Textling #104

Spring has arrived, with caveat. The blackbird in my garden jubilates; a rose bush throws pale yellow blossoms in the air; scents need greeting, breath wants blessing, I will, I do – but…

So bright outside. I love the light. Greedy for unadulterated vibrancy I don a cotton jumper chive stalk green, with trousers dyed to out-shine poppy fields – for a medical appointment, then, to make the most: in bed – yet…

First, grief whips sentience like a spinning top; now, calming, drags my hodgepodge toy heart on a blasted string. Everything reminds of Mag. Don’t let me forget.


Audio

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, bawl 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