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!
“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