No easy way to travel on your own when you’re at your best lying down, can’t propel yourself in a wheelchair, and struggle to keep compos mentishood and speech in reach. Fatigue-induced pain-levels may swing skyward first. Motivation is strong though as it’s more than two years since you last saw your mum. When you finally crawl away from TB and its treatment woes you plan, prepare, hope.
Terrified until the journey starts, you give yourself over to being conveyed by an array of strangers: driven, flown, rolled, even carried, and when parked in transit (far from the loo, just as well you’re without water) do not think beyond the next incremental task. You have a Zen master side! And a pocket full of cards detailing symptoms of POTS and M.E., and some of your immediate needs, should words fail you.
Popping grapes on parched tongue turns into ambrosian spectacle. During the flight you’ll slump across two seats (you paid for the privilege). At the airport you sit, slouch, hang, curl on a blanket on the floor, ready for another member of the relay-team. It’s an exercise in trust. Staff, on long shifts and underpaid, attend with grace and generosity. You radiate gratitude at every stage. The house you grew up in awaits.
For two weeks you spend much of your time in bed, eyes closed, but you and mother (who is elderly and now has to look after you) have gentle afternoons together, chatting as long as energy holds. So good. Wish everybody could.
“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 Rejkjavik, 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: