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