Some days are unspeakable. Fatigue and pain dislodge me. Even my voice becomes unhinged, that last door. The earth turns, rivers flood, neighbours shout their children down, a girl glides by, humming a vague tune, and I lie, useless and unconcerned, like a hiss fallen from a hater’s mouth. Later, as I recall, I find words wanting, their essence (and a foot of mine) tethered in the hinterland.
Too often my chest fills with juddering beats, as if my heart were jumping up a ladder, rung by rickety rung. Too often it hurls itself against my ribs, over and over, until I lie, wherever I am, and let it do what it can.
During the diagnostic test for P.O.T.S. (Postural Orthostatic Tachycardia Syndrome) you are strapped to a table, which, after a period of supinity, is tilted upright at an angle of 60 degrees, for the longest while. Blood pressure and heart rate are monitored as one’s heart pumps, and one’s brain drums its urgent need, and heart beats faster, and there’s a rush of something in your head, an emptiness, a drop, and heart labours on, and you keep your eyes wide, and heart beats harder, and you smile at everyone you ever liked, beats faster, and hands and feet turn purple, pummels and pounds, and sticks and stones, so hard, names and bones, harder still, and dizziness is frightful, and the heart, and a faint might be a home, and the heart, so long, and the heart, and the heart, and the heart rights itself, slowly rights itself as the table tilts back, downright, end-of-night back, and blood flows all around, in full glorious circles, and if brain could heave a sigh, it would, full fathom fickle, ha! And I am, utterly utterly, I am. Me pots, you pans?
Thanks to a small butter-coloured pill, half of which scarily, soothingly sends me off, I’ve started to sleep a little better. How bland hope can look! Daytime needs rituals and incantation to keep me calm: while my body favours and enforces a level plane, want has fully woken.
Crazily my best hours are before dawn. If I can, I sit in the garden just as light lends the sky a purple hue, so faint it might be imaginary, wished there to spur daytime on. Next the hazel emerges: its ochre foliage throws itself forward – I’d like to stand in its glow. The leaves of the cabbage tree, sharply drawn, hover on the verge of green; for a few moments everything else is bathed in a beautiful, almost liquid anthracite. My thoughts turn to silence and separation, different forms of out-of-sightness, but can I stay in the dark a little longer, please, and listen to the blackbird which brims with jubilant notes? Later, autocorrect doesn’t want to know, changes nightshifts (invisible and poorly paid) to nightshirts and without further ado plonks me down in a 19th century period piece, where no-one, really, no-one, has ideas above their station.
Morning belts out promises day won’t keep. I pretend I don’t know, let want roam, even as gravity pulls.
Like a coin pusher in a game parlour whose tokens rarely reach the ledge I herd before me all those things I ache to do. A penny for a plan, naughts and naughts of them: books to read, people to meet, work to make, exhibitions to see, borders to cross, thresholds to leap over, and the heart pounds, and the brain shouts: syncopation!, and the clock turns its face away – tick tock, tick tock, hold that thought, tick tock, tick tock, let it drop.
Fatigue hexed a ring around me, arcane, impenetrable, and I, with arms stiff as bells’ clappers, have no idea how to break the spell.
The last ten days were marked by an aggregation of difficult news and instances of exemplary kindness and consideration. Heartstrings were knotted, tugged at, wrenched, torn, mended. There’s nothing for it but try and tie it all into a neat little bundle: a sudden death; the cooling down of a friendship; the Council’s cutting of services, depriving me and others of support, and those who slog away in the sorely underpaid and undervalued caring professions of income and employment; anything this government said, did, kept silent about; a hospital nurse who made room on the floor, sat by me where I lay, and calmly explained what was happening with my heart; a support worker who came when the sudden onset of aggressive symptoms – after I changed insomnia meds – got a bit much; a friend who travelled early on a Sunday morning to spend time with me and arrived with a huge bag of homemade foods – breads, cheeses, winter stews, parcelled and portioned for easy access; the care packet my mom sent from the motherland; a night with six hours of unbroken sleep.
Maybe what pleases me most is the pale yellow polenta cake with blueberry dots my friend baked, not just because it looks and tastes yummy, but because I can share its delights with the lovely people who come and help me. Almost gone now.