HEART ATTACK

ODE TO THE 'INVISIBLY' ILL (for M.E. Awareness)

NEXT TO THE SKIN

Photo credit with thanks: Kaboompics .com from Pexels

I still can’t bear

To wear wool

Next to my skin.

Thanks for that,

Family holiday

Fifty years gone.

A draughty caravan.

The east coast cliffs.

My new white woolly

Jumper with the roll neck

That nearly pulled off

My ears, dragging it

Over my head.

My occipital bone

Would emerge with a pop.

The hand-me-down sweater

Had shrunk in the wash

Squidging my puppy fat

In its greasy cable-pattern

Straitjacket.

Whooping cough

Mixed with pitch-and-putt,

Primrose Puffer,

Smell of rockpool.

My chest disembodied

With hot racking peffs.

Tinned vegetable soup,

Comfort food

That brought no comfort.

I suppose the vomiting

Was already written

In the stars and salty

Tide-charts.

Anyway, it happened.

Suddenly.

The arm of my woolly

Wasn’t quite so white, now.

Fever made the memory,

The touch of wool, distort

Into a nightmare loop,

Stiff itchy filaments

Squeezing my soreness

Rubbing me raw

With every rasp

Tickling, tingling,

Pinching.

 Two years later

At a party,

Under the table

I ate too many

Of those controversial

Chocolate dunkables

Sponge and hidden

Orange jelliness.

Cake or biscuit?

I had to be sure!

Greed not pertussis

My nemesis this time,

Again I was sick.

It only put me off

For a half a day.

If that.

(But still I won’t wear wool.)

SWINGTIME 1963

Buttery sun slants through the nets
Bootees kick into light
Dad’s dependable shunter’s palms
Guide to-and-fro at my back
Terpsichore clock hours bouncing blissful
From Bill Haley’s vinyl track
On the scarlet-lidded Dansette

Toddler pendulum, Dad rocks me

From kitchen cool to living room warmth

Up, lifting, back, forward, toes pointed,

Flying gaspy giggles, you trying to sing,

Floor tilts with subsidence

From mine-shafts burrowing

Blind moles under our valley

Dropped pencils roll from the south

Towards our cramped back yard

Its draughty outhouse, crunchy coalhole

Steam train rings on rails

Shudders the triangular under-the-stairs

Vibrates my heart-space with its presence

I don’t recall the Kennedy shock

When all the world stood still

Knowing where they were,

What they were doing.

I was ready already 

For the Moon landing.

How quickly it came, like the end

To my sixties swinging

Earthbound then soaring through stardust

Orbiting before the plummet

Two years later, back on the ground,

I run my fingers over those hooks

Either side the jamb painted magnolia

Echoes of where I swung without cares

Where hospital bed now fills the room

With its pulleys and chrome

When the dark blood clot moved into ours

While I was sleeping

And ate my daddy alive.

BUTTERFLY WITH BONES - a poem for those who live with chronic illness

#MILLIONSMISSING FROM THEIR LIVES WITH M.E (M.E. AWARENESS DAY 2017)

In the middle of living my happy, busy, joyful life, a monster called Myalgic Encephalomyelitis came and ate me whole.

The M.E. monster stole my work, my home, my income, my social life, my health, my independence, my spontaneity, my possibilities and a big chunk of my future.

I spent years blogging about it here:- M.E. Myself & I Ask You (Joyce's other blog about living with M.E. and Type 1 Diabetes) if you want to know more about my journey.

Today is M.E. Awareness Day worldwide.

Today, millions of people with this devastating, life-changing disease, are uniting under the #MILLIONSMISSING  banner to raise awareness of M.E. To fight the willful misunderstanding, underfunding and neglect patients have suffered for decades, from the medical establishment, the media and government.

For years I pushed through, blaming all my pain, bone-crushing exhaustion, vulnerability to infections, heart arrhythmia, unsteadiness, sickness and cognitive dysfunction on my diabetes. But it wasn't just the Type 1. Autoimmune illnesses love to flock together. M.E. had decided to join the party too, to move into my central nervous system, my immune system, my brain stem, my whole body.

One of my social media posts for M.E. Awareness Day 2015

Nobody knows how all this started. One day, we will. I had M.E. symptoms back as long ago as my teenage years, with periods of boom when I felt fine, and bust, when I was totally unable to function for months on end.

It worsened in my 30s when I was working in South America and contracted giardia, a common M.E. trigger. It worsened every time I crashed and tried to struggle back to work and life. I had severe shingles in my head (not "all in my head") 4 times in 8 years as my body struggled to cope with the onslaught of being attacked mercilessly from within.

Then, in October 2005 I collapsed in the week I had the flu jab. Sometimes over the years, the flu jab has made me very ill, other years, less so - a vaccine lottery, for me! That year, whatever the trigger, from that moment, on a Sunday morning before work, life as I knew it was over, in spite of my best efforts to continue as before. My body, my brain, the me with M.E., would no longer co-operate and in 2007 I had no option but to accept early ill-health retirement and put my life into limbo.

All my GP and the NHS could offer was a dose of CBT & GET (from the now resoundingly discredited PACE trial) which made me and so many others worse. In the end, the occupational therapist forced to administer this torture at one of the government's so-called "Fatigue Clinics," knowing I knew as much as she did about CBT and much more about coping with chronic illness long-term, looked at me and said apologetically: "You really *ARE* ill, aren't you?"

Ten years later, here I am. To put a positive spin on it, I have been worse than I am now, both bedbound and housebound. Even now, though I can occasionally get out into the local countryside or a hospital appointment, this often leaves me so drained and poorly, (with the classic M.E. post-exertional exhaustion) that it takes me days, weeks, or months to recover.

On a better day, I can fill my life with joys, subtly different from, but just as valuable to me as what I treasured before.

Writing.

Researching.

Photography.

Reading.

Dog-sitting.

Birdwatching.

I am one of the blessed. Others become bedbound and never see the light of day again. Children. Men. Women. Just as I was often convinced I would not. Without the support of a loved one, my dear mum, there's no question. I wouldn't still be here. Too many are not.

Today I give a huge shout-out to all my fellow #millionsmissing all over the world. Those and their carers strong enough to join physical demonstrations to raise awareness, hope, understanding, funds (including the excellent biomedical research championed by INVEST IN M.E.), resources, research and, one day, a cure. A shout-out too, to all those who can't be there with their broken bodies, but who, like me, stand shoulder to shoulder in spirit with the rest from our homes and our beds.

The monster can't keep us down. It tries its hardest, though, every day, in somebody's bedroom, darkened, unseen, mocked, forgotten.

There are #millionsmissing - but finally the lost are finding a voice.

MY DAD: BORN THIS DAY 1924

Today would have been my dad's 93rd birthday.

He isn't here to celebrate it with us, but we remember him with love through the years.

Dad died at 65, 20 years after suffering a series of massive strokes at 45 (or as the doctor airily insisted to my mum, who knew only too well what had happened, "It's just a touch of bad bronchitis, Mrs Barrass!"). The doctor walked out of my parents' bedroom that day, leaving my mum bereft and alone with the obvious lie that my dad had merely a bit of a chest infection, even though his speech was slurred and he was weakly doing the opposite of every action, pushing away when he should be pulling towards, spilling when he should be holding steady.

Only a second opinion brought diagnosis, but soon the ambulances were on strike and he was forgotten for much of the time he should have been fetched to physiotherapy. Such were the times at the dawn of the 1970s. The strokes left him permanently disabled and unable to do anything without support. For many things he most loved, that meant not enjoying them at all, ever again.

At 8, I saw the happy, strong, capable, funny dad who used to stand on his head to make me laugh and gave me fireman's lifts till I was hysterical with giggles, turn overnight into a stranger who struggled to make himself understood by slowly spelling out words on my old toy chalkboard with magnetic letters, choked at almost every meal and lived in a huge hospital-issue iron bed in our tiny front room with calipers, pulleys, feeding cups, commodes, canes and humiliating helplessness.

No more running down the path, past the freight weighing shed, across the yard, along the platform to meet him at the little station at the bottom of our garden where he worked as head porter and shunter. No more that thrill of hearing the purring crescendo of the engine of his motorbike as he arrived at the school gates to whisk me off home or on some impromptu adventure in the Yorkshire countryside.

Dad overseeing my first steps on the lawn

But that happy, strong, capable, funny dad was still inside that often child-like, stubborn stranger as I learned to understand, growing up in the shadow of his loss of freedom and dignity. So many things remind me of him with thankfulness: maps, bikes, unplanned picnics, cherry genoa cake, corned beef sandwiches with brown sauce, trifle, playing patience, silly black-and-white movies, radio comedy, pit ponies, mystery outings in the motorbike-and-sidecar, steam trains, railways, picking the second favourite in horse races on TV, the spiral staircase up Hooton Pagnell church tower, watching the wrestling and scrambling and snooker, tinkering with things, laughter with crinkled-up eyes.

Me & Dad near Filey, c1965

My next book, Cloudhover Solstice, is dedicated to him, set in the places on the beautiful Yorkshire Coast my dad loved and which, without him, I might never have discovered or laid down such treasured memories that keep him alive in my heart. I could go on, but I'll just say:

"Happy Birthday, Dad! We love you and we'll never forget!"

Dad & his only child - yours truly, 1961

My dad, porter at Bolton-on-Dearne railway station in the last days of steam.
Quintessential Yorkshireman and a decent, lovely lad.

ATTIC

When I was little, I dreamed of writing in a magical attic.

I dreamed of just having an attic!

Back then, in Railway Cottages, painted Railway Green with Railway-regulation paint, we didn't have one. No attic to go writing and dreaming in. Only a dusty cockloft where my dad would store those once-a-year, just-in-case household items, reachable only by adults, only by ladder. Only an outside loo and a coal-shed of similar compact dimensions in our little yard, where the zinc bath hung from the brickwork, the bath we filled with kettle-and-panfuls of boiling water the night before school.

But I wrote all the time. On the dining table. On the three-legged tipsy stool my granddad made. On the dressing table surrounded by scary mirrors that made you look every which way into the shadows in the corners in the fading lemon light. On my lap. On the couch in the front room with the big light on before tea. In my bedroom. In the garden, where steam trains whooshed by and sometimes sizzled to a stop at our branch line station, spiriting my imagination away to wondrous unknown horizons beyond our valley.

I was writing my world a word at a time but still I would dream of my writing attic. Was it out there, lonely, waiting for me?

I dreamed the Moon would peep in through the little window set into the roof, peeking encouragingly at my scribblings. The sparrows would twitter in their cosy nests under the eaves, urging me on to tell them stories.

I've lived in many houses, many manses, flats, digs and dives since those dreams first melted into maybe.

Then one day, illness sneaked up, smacked my hands off the wheel of working, dismantled my strength, drained my batteries, clogged my muscles and bones with rubbery uneven pain, fogged my clarity, burgled me of my old whirlwind of energy, pickled my possibilities.

I moved here, forcibly retired with half my life still not written.

A little rented house in a village where woods, streams, fields and wandery ways have crept close enough for me to visit them on my better days. A garden full of flowers that imagine themselves into colourful calendars of the passing seasons. Eaves laden with sparrows and a clear southern view to track the Moon sashaying her catwalk arc towards the west.

And guess what else was waiting here for me?

My attic.

My writing space. My rooftop chamber of dreams.

I feel so blessed. I feel its joy, its sigh of relief surrounding me as I write.

I hope I was as worth its wait!

SO FAR UNDER

SO FAR UNDER

So far under I can't swim back to the surface.

Was I ever up there? Stark in the sunshine?

Shifting ponder mouths me down, floors me.

Somewhere Moon is plucking up tides,

Distorting the equator,

Puckering cliffs,

Frothing rock-pools with crisps of dead kelp.

My ribs ache from the kiss of a flame-tongued chimera,

Thump of pantechnicon push in the seething dark

Breaking me utterly, no tracks to trace retreat.

I should be psalming howls and how longs

Yet I banter and jive from that place called normal

Bobbing my head with quotidian nods

Catching crabs in the slipstream undertow

Sucking me down askance

So cushioned and carried

You need never know.

TREES OF HOPE

If this resonates with you,  you may also be interested in my other blog which I wrote from 2010-2012 about my journey with the autoimmune conditions M.E. and Type 1 Diabetes
M.E. MYSELF AND I ASK YOU

Thank you so much for dropping by and for your comments, shares and wonderful encouragement along the way!