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.

Will try to post daily (or whenever energy allows) 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 #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.

 

The full tribute (an edited version of my textlings), incl. voice-recording, has been published by M.E. Association

Mag asked mourners to make donations in her memory to the 25%M.E. Group (instead of sending flowers to the funeral service). Isobel Bennett has set up a fundraising page

 

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 #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