“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.
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!
A milestone to report, minor, momentous: one evening last week I was able to watch – wait for it – half of Channel 4 News. In the living room. At 7 pm! Usually my paltry energies clock out late afternoon, but for once I was not in bed, far from sleep yet eyes ramming shutters down and ears sucking on radio dials like a babe on mother world’s breast. So: a mile pebble. A yard, inch, meter, thousand leagues mite, not repeated since, alas, but hope floods in through the tiniest of cracks.
And rushes out through great man-made gashes: the news that day concerned the fire at Grenfell Tower. The horrendous death toll (still rising) explodes my brain because, in the wider scheme of things, fire safety costs copper coins. How did we come to allow such contempt for people to reign decision-making? What if such callous denial of really very basic care becomes the norm? Words matter: social – once ethical, inclusive, humane, suddenly has a demeaning slant. We must reclaim it. We can never get over this.
First sight this morning: a lip of light around drawn blinds. Open window, lasso out to catch at clouds, at words: bath, read, write.
Former self was dawn’s creature, bickered with the birds and figured minutes might be hours might be days. Nor did she count. Books in bed, predating; once upon a time we wolfed them down, nary a nibble now. Brain is trussed with ticker tape, its constant crackle wearies. We read, we try, and pages petrify – headstones where doors swung wide.
When we’re the slightest bit awake we ache with hunger, lust for learning, visit sentences we loved, were bruised by, hoping they’ll return us to abandoned worlds. Marks in pencil, thumbnail scratches, coloured tails to pull a kite down. We meet “ein rotes Wort coming the other way.” * We wait, fangs filed.
* Anne Carson