Hospital appointment today. Being in the world for a few hours clobbers the already fragile time/energy continuum till it lies face down in the sand: starting days before, as I try to prepare and provide for the fallout/backlash/after-effects; more so the days thereon, when everything grinds to a halt, as if someone hit pause on the film of my life. I re-emerge in painfully slow motion, frame by frame if you like. And all the while I know time flies.
Energy-wise things keep sliding. Sleep-thieves strike most nights, and while they’re at it trample on my hands and sow doubt in me noggin about – almost everything. Because fatigue entraps the body and beyond; untethers thought, drive, desire; severs connection; makes you wonder what (not who) you are.
At its worst it consumes me: I lie tightly coiled for hours, limbs in a knot, like a fossilised pretzel. Speech globs on the tongue, eyes are stuck in an empty gaze. There is no distraction – I cannot read, watch tele, listen to the radio. Silence spreads in my head, heavy, and cold as a snowball. Every so often brain pounds out alliteration loops, or spiralling versions of I’m so tired, I’m so tired which I try to slow so I can put a tiny wedge between myself and this feral thing we call fatigue.
As I resurface selfhood is as insubstantial as a dust bunny. But there’s a place in me where something stirs, and all I want is reach – through layers of weariness – and let a string of words swim up from its sediments.
The other day I sat in the garden and got drenched. I’d woken to the heavy beat of rain, a sound both ominous and reassuring, and checked my limbs for relative coherence. Not quite 6 am when I shlepped outside: that time before dark cedes to light and you know of colours before they emerge. Sky, ground and foliage in grey hues, all from the same palette. A few windows in the neighbourhood lit up, dull yellow cut-outs. I pulled the chair away from the wall I normally lean against and sat, eyes closed, shivering in the morning chill. Salvos of fat drops on hands, face, shoulders, the rest of me, drumming sensations directly on skin, through cotton tee, flannel pj’s. Different degrees of cold. Feet warm in running (!) shoes. The metal staircase rising behind me – drops swelling and falling at slower, irregular intervals; from further off the hum of car engines and the occasional aeroplane.
For as long as I could I stayed in place, suddenly new, then back to bed. The elements moved out of reach for the rest of the day. Had something to remember though.
Ever hopeful I booked two tickets in July, for the wheelchair tour of Joseph Cornell’s Wanderlust at the Royal Academy: one for myself, one for a facilitator = vehicle pusher and pleasure sharer. I wish I could go places without travelling. Scotty! Just now sitting up comes at a prize and the journey is enough to wipe me out.
Great art feeds my soul like nothing else. My whole being is animated, challenged, nurtured. Right after, pain and exhaustion may well obliterate the memory of what I’ve seen. As I recover I recall though, and my artist-self – the best part of me -, bubbles over.
Does fury have a half-life? At least I’ve learned something, about loanwords and false friends. Wanderlust translates literally as desire (or lust) to hike. It is a melancholy term, linked to German Romanticism – a sense of wonder hovers. Oh, it oozes yearning. I used to walk for hours; these days I count my steps. I went to exhibitions all the time, crossed over into other worlds…
The tour begins at 9 am. I dream myself there, shapely on a wheeled divan, its engine purring. Eyes wide, ears cocked, notebook at the ready. Then home in the arc of my grin, catalogue in bag.
If I had more courage I’d exclaim on Facebook ‘Had a bath today, heyho’, ‘Spoke on the phone’, or ‘Walked up and down my garden path’ (it’s been a while) – great achievements in my book, and more than a multitude of M.E. sufferers (in silence) can manage. Such banalities, such profane deeds, fluff pinched off the fabric of life… But these lives are shrunk; each activity fragmented, a labor of finely calibrated movements and gestures. Contingency mostly, completion elusive.
This text too is piecemeal work, stitched together from words and notions, slivers of time, and the lightest of keyboard touches. It is intimate, bare bone stuff, and I question my motives. Writing here seems almost extravagant, my own (tired) kind of me me me. And a reality check: This is not how I see myself. A sort of patchwork selfie, if you will, snatched from the here and now, not the there and then (where I’d much rather be).
Amongst all the f-words fatigue is the worst. M.E. is like a burglar who steals from you every minute of every day. Its booty is your energy, half a sackful of cognitive functions and whatever else it can find. Out goes your profession, your social life; your mobility, vision, memory; your ability to look after yourself without help; your idiosyncratic vitality – in short: the way you were in the world. Hardest though: your intelligence curls up in a ball and rolls out of reach and you lie in wait for those rare instants when you can seize it by the scruff of its scrawny neck and pull it from under bed, for a wee while.
I’m a squeezer of moments, a wrestler of worth and meaning from lucid periods that are never long enough. As soon as I have the tiniest ounce of energy I want things luminous!
This is not a lament or an exercise in melancholy or a hero’s tale, but an attempt to insert myself into the world, worm myself and all those other invisible ones into your consciousness with my words, my craft, my artistry. And while I’m at it I might as well try to turn a bit of straw into gold…
Nowadays I spend most of my time lying, by which I mean supine, not telling untruths. I love the ambiguity of language, write in other tongue, not mother tongue – slightly off-side. Pitfalls welcome!
Much of my life is inner. Even at my most tired words matter: I am their plaything. When nothing goes anymore, in zero activity mode (and I mean zero) after over-exertion, I can get stuck in maddening alliteration loops – ska scalp skol skittle skein – skip skirmish scuttle scold – scarecrow – skunk screw school scrofula… Or sink into delirious rhyming schemes – slime lime time thyme mime Keim Reim shine fine furrow filibuster…, and round and round again. There’s no off-switch. When all I want is rest words roll and rock and rumble, skull-under. I see and hear them. I cannot budge but something wondrous is on fire, spits and crackles, and now, as I remember, makes me laugh.