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
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!
Skin a pilfered, painful thing, clearly not mine as much too tight. No touching! No budging either, utterly depleted, and yet so wired I might stretch and pull the sky down for a wrestling match. Senses rule in radar mode. Day shines too bright. Odours breed and multiply. Worst: ears catch at sounds rapaciously. The world plays trumpet in my bed; birds toot their tremolos, the rowdy lot. I hear a thousand sirens growl – their manes are shorn! My say-so: no chance to heed their clown-mouthed calls when all I need is rest.
Carer knows: no hoovering in vicinity. The cutlery drawer is the enemy. Oh the din! Leg, wing, fin – how can I get away? Auricle just wouldn’t say.
The fall was steep, pain so fierce it almost purged me of relation. In its throes for days, nerves afire skull to toes. Then the process of emerging, trying to remember, searching for elation. Fatigue’s blunt fangs sunk deep into my hide, like calcified negation. Soon as I could I sorted shards of shared delight, sent cards, frogmarched words across the pillow till they lined up (kind of) right. Drive seems strongest when abjection worst.
Still, call me lucky! A friend is bed-bound, cannot bear the light I thrive on, and has not left her room in years. I round up exultations, crazy greedy for more.
Last Tuesday I was out, for pleasure. First time since the book launch in November; already dreaming of more… Went with friends to Dulwich Picture Gallery – Vanessa Bell’s paintings called out to me. Favourite jeans on (flared), and riding a grin; or else a wheelchair pushed by stronger arms than mine. No coffee afterwards, no sideways glances; all energy assigned and labelled ‘art’. Beautiful portraits there, abstraction too, collages; vibrant, discerning work. Always learning, I think, trying out. Books feature – people read, which I loved especially (long to myself, so much). Good to know: DPG is well-equipped for rest, and dotted with divans. Very comfy indeed (says one who often lies on floors), in dark emerald green – most becoming with my orange blanket. No protests when I lay. Soles did not touch, I swear.
The painting I wish home with me gives an intimate glimpse of Virginia Woolf (Bell’s younger sister), looking worn, held in an armchair’s warm embrace. She’s got a piece of knitting in her lap, red as the flesh of water melon. Her hands seem caught in hesitation. I’d like to look at her every day.
I have a weekly appointment with highly time-limited, semi-supine exuberance, then duly plunge into days of crushing disconnect, with a dizzying dose of pain. Call it the Jack in the box effect. I count my blessings though, assiduously – for many the lid stays shut.
Lovely visit. Lovely visit! Cupcakes, talkfest, crochet recall. Cut when fatigue befalls, like castigation. Pain strikes cyborgian notes: arms, calves, skull bespoke from basement metal forge. No Midas-touch – a pound a limb. Enhancement of abilities – fail; branching of facilities – nay; not even a green thumb.
On the clock: pith, purpose, potency, a kind of flowering. Crack in rock.
Mid-January a six months’ course of treatment for TB trundled to an end. Third illness, sick on Sick, a gripping slew of side-effects: friendship with food cut loose, nausea bounding up and down the Richter-scale, and dizzy turns, with occasional, almost blissful reprieves. No rest for the knackered…
I am grateful (and lucky) that my lovely doc insisted an erratic but tenacious cough was worth investigating. Baffling symptoms are all too often banished to the half-light of M.E. where they incur no action.
Now I’m slowly crossing over from the zone of bounteous recoil, a first tentative hooray teeters on the tongue. Is it really done?
Hle
I am lnely.
I am lnely, and I am struggling.
I am nt k.
I cannt say it withut shame.
N petry. N metaphr.
Lnely.
My elderly mom, out grocery shopping, is mugged not far from home. In bright light she is thrown to the ground and robbed of purse, vitality, and wobbly confidence. I, useless as a bowling pin, do not rush to her side, not by road, river, runway, sky. Tremulous voices steer a course, measured mouthfuls, the telephone astride my chest like a luckless charm. In time she rights herself, retraces daily routes to shops, dad’s grave, fast walks through empty fields, with fierce intent.
A friend of mine, severely ill, whose spirit rises every morning while she can but lie, does not share her mother’s dying hours, nor attend the funeral. Her grief, of which she cannot speak, her devastation, remain unbounded by communal rituals. Processing is inner, remembrance alone.
Not being there when we need to be, want to be, is felt, by us, no matter what the circumstances, as failed fidelity, incurring a debt of love.
Feeling my way towards writing again. Better brief than not.
Hope in Midlife with a Chronic Illness
Young people, arts, kindness and being an autism parent
insights from the invisible world of energy limiting chronic illness
Insights from the intersection of patient & pharmacist
supinesublime 