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 #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 #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 #85

One for the dictionary! When you’re just about ‘well’ enough to try again:

Textling #84

As often as mind has room I fume a failproof lookalike who strolls about town. Oh, the places she has seen! Priceless when fancy factualises for a wisp of time. A caper on my scooter – first in a year, or two. Almost called out – look at me! – like a child riding her bike without stabilisers on. Hung a while on armchair at the bookshop twenty doors from mine, tried a little conversation. Turns out a semblance of normality is quite a strain.

In a matter of minutes home and supine again. Slept in clothes that night, entwined with spectre. Days later the idea of a repeat seems preposterous, but: elsewhere was achieved, momentarily. Blue plaque please?

Textling #80

In bed (not on) long before evening falls; still bright outside, not nearly night. Like most, or all, I waited for the light of spring, green shoots, raw splendour to refute earth’s plight, yours, mine. Yet now that days step up their game, I find that spring does not reside in me, take hold, drive buds and blossoms. Or not the kind I hope for.

A roll call by the weathervane finds selfsames skittered out the door. Just words now: artist, maker, reader, earner, sleeper, walker, failed lover, lucky friend… One with steady hands, one who remembered, one who talked a mile a minute hours on end and savoured silence. So earnest, so keen to do things right, with a propensity for shame. I wish I’d worried less, been bolder.

At sunrise: Take me to the warden, for a slice of day, a pound of night!

Textling #78

M.E. Awareness Day! #MillionsMissing Round Three. Made a card and sent to friends and comrades-in-harm. Would like to do an air drop or a snail-mail post-out to all those who cannot leave their bed, their room, their house; who feel invisible, discounted, cast aside, and can but lie in wait for better times.

(Dedicated to Mag F., who is severely ill and still my rock.)
© Marion Michell

Textling #77

The time has come for #BedFest – a worldwide hashtagged festival of art, music, poetry, performance and multifarious creativity by people living with (severe) M.E. Voices that are seldom heard, people who are rarely in the world, called forth and gathered by #MEAction and its volunteers. Let’s escalate M.E. Awareness!

I am so moved by people’s bios, their guts, their drive, their sense of beauty, and the vulnerability they dare here. Teachers, engineers, pilots, artists, students, nurses, social workers, and an opera singer; kids, teens, adults of all ages; mothers, fathers, lovers, friends; people who led active lives, worked, grew, hiked, carried shopping, played the bagpipes.

We’re not desperate because we’re ill (hard as it is), we’re desperate because we’re still waiting for the clear and unequivocal recognition of M.E. as a physical disease, for proper funding of biomedical research, and, often enough, simply to be listened to. That we need a campaign like #BelieveME in 2017 is shameful.

Can’t wait to see my iPad screen light up with shared imagination. We’re upright in all but body!