“The demise of my ability to read extensively is one of my greatest losses. I try, but pages petrify. A few paragraphs must do me now; some days a couple of lines. It’s an issue many #pwme wrestle with, and contributes to our sense of separation.”
So begins a short article I wrote for #MEAction last week. I produced an audio-version as well and have decided to start recording my textlings to make them more accessible. I write as much for the ear as the eye, and have longed to make my scribbling useful. Advocacy (with a small ‘a’), and good practice for my voice (when able) as I don’t have much occasion for speech.
READING MATTERS. LET’S HEAR IT!
text and audio
WE’RE UPRIGHT IN ALL BUT BODY
text and audio
Unsurprisingly I did not manage, and yet I’d said ‘Don’t worry, I’ll be OK.’ Two little letters charged to carry normalcy like droopy caryatids in pretty drapes.
Mustn’t grumble, I think, I’m not as bad as X, Y, Z, very nice roof over head, food in fridge, can write a bit, occasionally enjoy a visit. Ending up without speech, unable to read (not even tweets, though glad to know myself addressed), to phone my brother on his birthday, or filch dinner from the freezer – par for the course! Radio voices, usually the last resource, pan out as well? Just let them go. Charlottesville, Partition, new M.E. research, and cards from friends, tied in themed bundles and tucked away, along with fresh ideas and keen intent? Breathe…
In this fast world I chase a hurried game of peekaboo. The ‘nots’ drag on unseen.
Some days the phrase ‘you’re just not good enough’ is all pervasive. It’s the shape accrued frustration takes, a crust, or coat, too tight to wriggle out of. Doubt thrives on silence (the chronic, polyester kind); when radio is the only voice you pluck the air for adjuration. And there she waits, your girdled guide, smacks bloodless lips and drools disdain: your art, your writing; your sleep, your rising; your ability to connect, converse, consider; your quests for energy and cure; upswing of any sort – whatever you try is veined with lack.
Red letter days are those with room for conversation. You gush in half-remembered, rampant tongues; hush falls before the need is gone. Just time to carve an ear into the ground, and while fatigue declares she’s won another round, the joys you stumbled on fan out in quiet jubilation.
Next door declares its augmentation with screeching saws and thumping hammer blows. Builders’ lore did not prepare me! I turn a feral thing, snarling as drills roar out their diatribes. Dumpsites for thoughts are chock-a-block, and other senses in decline. Each pore an ear now, each orifice. We dream of dams and flight and being drunk on words.
Headphones harangue us for an ode: best love for Bose, I sing. But fortitude is thin as fickle, smokes fags behind the neighbours’ shed. She thinks of sourcing hearing out. Someone fetch her!
Had a run-in with time and lay in the car, stiff as a bell’s tongue, and just as mute. Pain in aspiration stage – still hoping I’ll hurl myself against walls, eager to chime.
After a blurry episode give looking another go. Burgess Park is not itself right now: tiny, lifeless, the green of grass and foliage moulded in the same garish tones. Clouds, birds, a plastic sun, tacked on a smudge of blue. We too minuscule and stuck mid-move in a scale-model some architect should have improved.
Bed, at long last. Limbs scattered like mikado sticks; palms so painful they seem large as cities. Must have crashed across the continent, one hand throbbing in Rejkavik, the other limp in the Aegean Sea. Each crumple in my sheet a mountain ridge or carved out canyon, nuzzling the gash of me. A chore to breathe.
Days shivering in sleety weather zones. I pine for hot. PEMalaise me not!
One for the dictionary! When you’re just about ‘well’ enough to try again:
As often as mind has room I fume a failproof lookalike who strolls about town. Oh, the places she has seen! Priceless when fancy factualises for a wisp of time. A caper on my scooter – first in a year, or two. Almost called out – look at me! – like a child riding her bike without stabilisers on. Hung a while on armchair at the bookshop twenty doors from mine, tried a little conversation. Turns out a semblance of normality is quite a strain.
In a matter of minutes home and supine again. Slept in clothes that night, entwined with spectre. Days later the idea of a repeat seems preposterous, but: elsewhere was achieved, momentarily. Blue plaque please?