May the coming year be peaceful. May it be filled with kindness, joy, connection. May each and everyone have plenty to thrive on, and a place to call their home. May we tear down walls, launch rescue boats, make people safe. May we stand up (even lying down) to violence and power over. May treatment for M.E., perhaps a cure, move within reach.
May we care for the earth, our beautiful abode.
LOVE AND HOPE TO ALL!
What a challenging year! Have pulled my last Xmas greetings into the present, framed wider. Enough with judgment and exclusion!
May 2019 be full of positive surprises, politically, healthwise; may we come together.
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?
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
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.
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)
A tribute to
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