The story behind the story.
Through my childhood, ‘art’ and ‘poems’ were subjects which appealed but with little knowledge or enquiry, hard work was the mantra at our tiny remote mountain home at the highest reach above the valley. There were few books and no libraries, we children walked or ran the grassy mountain crest for the mile and a half to a small road and a local council car, which took us to school and waited at its gates to bring us back. Perhaps the natural sounds of our wilderness, of streams that rose in the high bogs, seeped, trickled, pooled and cascaded, the elements ever changing, soft mist to howling lashing fury, gave a rhythm I absorbed; Or the wild white, brown and black Pinto horse which I ached to ride, his full tilt gallop of pure self-expression racing across our horizon from the furthest end of sight past our house and away beyond. Or my father singing as he pottered or laboured. I’m glad to remember him singing, as my memories are otherwise of a cruelly dysfunctional family. Caught in ever heavier crossfire, my impulse was escape. London and ‘artist’ beckoned, and I left.
My childhood childish creative efforts took on a different form in my new life; the machine which had worked unconsciously for me, with me, climbing trees, raking hay, exploring widely, running, leaping, began to break. Temporary all-hour, any hour part-time jobs, the trodden path of newbies in new cities, hit my physical system hard, as regular mealtimes became anytime eating. The healthy farm girl’s evolution was so abrupt and radical that it maybe challenged the aphorism Nature makes no leap.
Perpetual pain, fatigue, blocked circulation, caused by pressure from a bewildering shifting internal mass, soon overwhelmed my body and mind. Incomprehensible, to me and to medics, it generated an emotional imperative, to express, to release, to try to understand sensations too powerful to contain. Words came from “…an inner chaos crying for order - for meaning.” Arthur Miller resonates. Unending undiagnosed unbearable internal physical pain will cry out to be heard, when it’s gone on too long, invisible unnamed unknown except to the very few, the very close. Pain defers the self. The sense of me becomes future not present. As medical doors marked HOPE close, selfhood moves ever distant, a mirage wearing thinner then gone, beyond the medical wall. Separated from self, being alive is a mental pain beyond the worst unendurable physical pain. In that unknown and unknowable state, the imperative to express became a force as my breaking mind drove my hand to try to form words for the un-reality within.
Textbook training fails, medics give up. The patient, long juggling pain, self-loss and hope, loses the mirage ahead. There remains only one open door. Slipping through becomes compulsion not choice. I slipped but chance slipped through with me, saved me. Twice more I lost hope critically, my young children saved me. I could find no way to leave without impacting them. .
I owe my life to a stranger who called that first terminal breakdown day. And later to the world renowned spinal surgeon from abroad. His surgery saved me but my spinal nerves were forever damaged by the two year delay in emergency surgery for my critical condition. For years more his subtle intervention edged me beyond the blockage to a gut specialist and diagnosis: the distension and downward collapse of my entire gastrointestinal tract. It was no happy ending. NHS systems forced my return to the great hospital which had from the early outset decided my ‘Irritable Bowel Syndrome’ (IBS) was psychosomatic, and their surgery compounded my pain. I’ve since learned that surgery for elongated, distended and collapsed gut is not an easy fix.
Major surgery at age five had disclosed my rare organ displacement, left in situ, the clue never considered again in UK. By 2015 I was a grandmother when my pain gained its name: Ehlers-Danlos Syndrome, (EDS). A weakness of connective tissue - the stuff of every part of the body. Mine is a variant, as are the many forms without a known genetic tweak. Stretchy external skin, bruises, dislocated joints are easier to see than displaced, stretched, herniated prolapsed organs, bedded onto damaged lower spine, pressing on thinly sheathed nerves, blood vessels, lymph, fascia; shifting daily, cramping left side or right side with pain and inner crushing from temple to toes. Some have the worst version, whereby internal tissue is so fragile that organs can rupture. Most sufferers are female, and the medical path is tragically familiar, even for youth today. At the one Ehlers-Danlos meeting I managed to attend since diagnosis, Hypochondria headed the display board for the many sufferings patients face. And I’ve learned I was far from alone in being driven to attempt suicide.
We are ‘Orphans’. Too rare, too few to attract funding for research. But there are other deeper causes for failed diagnosis and care. Perhaps the most obvious is that we look well. And being in hidden pain while pretending to be normal, we try our utmost to stay looking well. Or hide away on our many days when we look too ill to pretend.
Above and beyond this, we are failed by our NHS system. Connective tissue interconnects our body parts. A single specialty medical system does not. Multidisciplinary care covers the ramifications of treatment for an identified condition within a specialty, interdisciplinary care is inter-territorial, a trespass, and short-term costly. Time, resources and lives are squandered in isolated mono-systemic focus on mutisytemic disorders.
On this trial-trail, the ‘hard work’ ethic of my childhood served me well. Being ill always means keep going, stay on track, act normal. I managed to live from ‘art’ - whatever came my way: greeting cards, film posters, portraits… a scribbly style emerged as I adventured widely and through 1980s exhibited at prestigious London exhibitions. From 1988 my breaking body, baby and toddler took priority. 1990s was single motherhood, health-hell, surgeries, with a blissful part-time escape into darkroom photography just as the world turned digital. By 2000, desperate to return to art, I took a great leap and fell into the predatory hungry jungle of property - I bought a cheap dilapidated studio by the sea. The late property-profit wave hit the backwater town, my neighbours colluded to gain from mt flat by driving me out.
Within that horror time, I felt and saw the cruelty of a profit over people psyche, which picked out and pecked out the marginalised, denuded of defence. Dragging my body on crutches, I could no longer pretend to be normal. Infused with dread, I tasted lives of countless others, victimised, gone or going on, who did not, may not, live to tell it. This other kind of suffering drove again my fevered words, empathy and despair as a crazed make-money machine hurtled towards crash.
Pressed onto life’s side-tracks, I found worlds I has no idea existed, drenching mine with immeasurable experience of dread, the darkness and the colour. And I live. Too many on this fractured road have not been as fortunate as I, in their bedrock friends, loving children and spirit guides.
This is an introductory fragment. The whole is too vast. It has found expression in my compulsive OCD-pTSD racing words, journals, reams of prose, verse, stories, film scripts, paintings, boxes and shelves of sketches, never time to try to float my flotilla, questing always the body-relief I know is out there, struggling on from countless surgeries, too often failed, each broken part unable as yet to factor knock-on parts.
Medicine is not an exact science. Medics are people, many are good, some are exceptional, I am finding these. Technique and technology are improving by leaps. My inner collapse can be, will be fully understood and helped. Keep on seeking.. Keep on expressing, remain true to yourself and truthful. Never ever give up.
