We're upright in all but body!

UPDATE: Now you can also listen to an audio-recording of Marion’s personal essay on Soundcloud.


#BedFest was quite the occasion. People appeared in PJ’s, crumpled t-shirts, crochet vests, keen to address the wider world; people whose voices are seldom heard, called together by #MEAction and its volunteers to share music, art, photography and multifarious creativity and raise ME-Awareness. We didn’t have to leave the house…
I am so moved by people’s contributions, their vision, guts, drive, and the vulnerability that’s dared here. Teachers, engineers, students, artists, pilots, nurses, social workers, and an opera singer; kids, teens, adults of all ages and from three continents; mothers, fathers, lovers, friends; people who – before the fall – led active lives, worked, grew, hiked, carried shopping, played the bagpipes. So much loss, so much determination, and a strong sense that we’re not desperate because we’re ill (hard as it is), but because we have been disregarded, even disparaged for years. Wonderful to see my iPad-screen light up with joint imagination.

They danced at dusk, they danced at dawn (2006/7)
Crocheted from artificial hair, each dress between 30-35cm wide and 45-50cm high

It felt good to be part of something so positive, proactive. I am a visual artist, but my hands are in trouble and I pour my art into writing. For #BedFest I read a textling (‘lings’ are a thing when all you manage is minute-work) which I duly refocused for ME-Awareness Day: “Imagine the most hushed, unrushed procession possible, flocks of people with severe M.E. filling the streets on berths, bunks, beds, futons, bean bags, sofas, wheelchairs…” Really, I wanted to do an air drop or a snail-mail post-out to all those who cannot leave their darkened rooms; whose eyes stay closed for much of the day; who feel invisible, discounted. Whisper in their ears: We know you’re here. Your voices carry.
“#BedFest is a rich and wondrous place”
There’s hope in the air at the moment, biomedical research is branching out, but overall attitudes remain ambivalent. That we need a campaign like #BelieveME in 2017 seems shameful. Distilling some of my experience concisely, poetically, is me trying to do my bit(ling) while holding beauty close. Fact is: unless completely eviscerated by fatigue I need to create. It keeps me sane, even if I ponder one sentence for hours. #BedFest shows that’s true for most of us. Also – we crave exchange and conversation and continue to meet in a designated Facebook-group for flashes of slo-mo artistry.
I was chuffed when #MEAction used a selection of my words, combined with Elizabeth d’Angelo‘s gorgeous paintings, to promote #BedFest on social media. A little feedback came my way. “Amongst all the f-words fatigue is the worst” touched a nerve with many… Nice to be useful for a tick, feel connected. I even briefly volunteered and cast a beady, half-open eye over people’s details before transfer to the #BedFest website. It’s a rich and wondrous place. Do have a look, hang out with us. Think what you can do to contribute, to help.
Let’s escalate M.E. Awareness!
@marjojo2004
supinesublime (blog)
www.marionmichell.com (art)

“Marion Michell’s textlings are carefully crafted and tightly focused chronicles. Piercing and full of gusto, they give glimpses of a life (and many others) bent out of shape by a debilitating and little understood disease. Most importantly though, language is turned into adventure. Her writing is lucid, luminous, and entertains, enthrals.”
Marion Michell: SUPINELY SUBLIMELY. Selected Prose. Published by Palewell Press

Facebook
Twitter
WhatsApp
Email

Latest News

A laptop sitting on a desk. In the background, you can see a cup and saucer, some post-it notes and a folder. On the screen is the Scottish Government's website, with a large title that says 'Scottish Good Practice Statement on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME-CFS).' A red banner is at the bottom of the photo with white writing which says, '#MEAction Scotland responds to the updated Scottish Good Practice Statement on ME.’ The ME Action Scotland logo is in the top left corner.

#MEAction Scotland responds to the updated Scottish Good Practice Statement

The Scottish Government published the updated Scottish Good Practice Statement (SGPS) on ME-CFS on 28th February 2023.  The decision to update the Scottish Good Practice Statement, originally published in 2010, was a result of the Scottish stakeholder review of the 2021 NICE guideline on ME/CFS, and its recommendations for implementing the guideline in Scotland. The

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.

Donate

Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Subscribe
Scroll to Top