“The way we do patient and public engagement is not working – it fails to have any real impact because it is outmoded and unfit for purpose. In part, it was never designed to bring real change, but to buffer it and maintain the status quo. Now, if we really want solutions to our current healthcare challenges, this all needs to change.
The task is fourfold:
• Learn to value what people with life changing illness, injury or disability (IID) can bring – see patients as partners
• Change how engagement is done – rethink engagement processes
• Support people’s capabilities to better work together – develop the right skills
• Develop new opportunities for people with IIDs to influence decision making – create new roles”. Gilbert D. 2016. Stop Kicking The Cat. https://futurepatientblog.com/2016/02/13/stop-kicking-the-cat-how-patients-can-help-shift-the-rule-bound-culture-of-the-nhs/
Once upon a time, in a far off land, those of us who were unfortunate, weakened and damaged were banished to the harsh and arid Valley of Despair. There, we crawled alone to find caves in which we could live our days and suffer through the cold nights. We were changed, frightened and alone. What we had hoped to be, we could no longer be. What we could do, we could no longer do. Who we were, was no longer who we would be. We were refugees of mind, body and land.
Those of us that survived – many did not - did the best we could. We eked out a life in the harsh terrain. We learned to be creative to survive the everyday bleakness – to forage for sparse and strange plants that bore orange bitter fruit, to bear the twists of our cruel minds that woke us at 3am to the bloody cries of wolves. And to do the best we could to adjust to the terrible blackness of the cave that was now our home.
Over the snail-like years, we came to explore the depths of our caves. We discovered pins of light in the walls. We chipped at the walls to yield crystalline and asymmetrical jewels. Of course, we did not call them ‘jewels’ at first. They were uninteresting – we knew they had no value – the search was only to bide time in our intractable boredom. And that the habitual and jittery digging was something we had to do to escape from the brutalities of our condition.
We came to remember tales from our childhood. Mothers at the bedside telling of the poisonous power of the ‘Strange Cave Stones of Madness’. That the cure for this cave-borne madness (ironically) lay only in the power of the Kings (those very same who had banished us). So, we knew our touching these stones was itself a risky business. But we had no choice. What else was there to do? Our very brokenness led us to delve into broken things around us – we yearned connection, with ourselves, with others, with stones, with the world.
Some of us started tunnelling under the rocks in our cave – we mined for treasure, though we did not know it. Some strange force kept us going, and kept us tapping with rocks, digging, exploring. We began excavating under the floors of the cave and unearthed such luminous and reflective objects that we stood amazed and bewildered by what we had found. At first we thought of them as devilish rocks – that they would destroy us further with their ferocity of colour. But we still collected them, as if we were driven by the very forces that had once banished us. We could only go deeper.
And then, one or two of us began to question what we had been told. Remember that this was happening across a vast Valley Territory – all of us were mining and digging in caves that we felt were isolated from each other. Though sometimes in the middle of the night, we wondered whether the cries of wolves sounded somewhat human, like baby cries, and we dreamed of fellow cave dwellers not far off.
What if these stones were precious? One or two of us began to polish the jewels and were amazed to discover that the act of polishing changed their colour, they became reflective – we saw our own true faces for the first time in years – shaded in amazing hues of violet and gold. We were changed from what we had been, surely. But some of us saw a kind of mysterious beauty, as if our endeavours had actually polished us! We glowed.
Now I see we learned courage, resilience, creativity and the capacity to hold a light within ourselves that was more than what we had before - this is the paradoxical vision that lay behind the journey and discoveries.
A few of us began to wonder that we were still alive at all. That there was something wrong, not with us, but the world around us. Perhaps the banished had a story to tell, maybe we had found something secret that we needed to share. Could the jewels be precious to others, and not just us?
If only the market dwellers, the old Stone Cutters, the citizens and the elite in the market squares would see what we had to bring, then everything might change. If we could share these jewels with others, everyone might see themselves for what they were – reflected, in-depth, human – in these mysterious rainbow jewel glows. Surely we would be welcomed?!
A few of us set off from our caves, excited and terrified. But our legs were weak, and our carts rickety. We were not able to get far. The heaviness of our load of jewels was almost unbearable, the horses we tried to harness would not pull in the right direction. There was no support from other strangers we met on the road. Though we begged them to help us, though we extolled of the virtues of our load, they would not believe us (though a few villagers stole our jewels in the night).
What kept us going? I am still unsure. It was much to do I think with the fellow Jewel Merchants (this is what we began to call ourselves) we met from time to time on the lonely, winding roads. We shared stories of our plight and were amazed. We did not know that there were others like us who had been so trapped and lonely, and who had the same dreams.
And so we started journeying together. We did not know where we were going precisely. The roads had changed. They seemed to loop around on each other. They were bumpy and led by treacherous ravines and up bleak hillsides. We stumbled and pulled each other up when we fell. And, all the time, we could hear far away the sound of the town. Once in a while, we thought we were near, only for the next day to see our hopes dashed and the silence fill the countryside once again.
Oh the many times we almost gave up! We fell into telling each other things would never change. And a few tried to get back to their caves, or threw out the jewels from their cart, despising their abhorrent erstwhile dreams as nightmares or fantasies. We were so close to the end. In both senses of the word!
And then one night, we camped close to a river. And a few of us fell to telling our tales and shared them under an elm tree. And more and more of us came – it was like magic. First one merchant appeared and then another. And soon there were hundreds of us. It was like some sort of inauguration – meanwhile our carts seemed ablaze, it was as if the jewels were being polished once again like new under the glow of our fires and a large orange moon.
We shared tales that we had recently heard – of Stone Cutter market stall holders beginning to try to sell the jewels they had stolen from our friends; of a few of our fellow merchants that had broken through to the town somehow and begun to spread the word - that we were coming; of fights and arguments about the worth of the old stones versus the new; how laws were being re-written; how some merchants were being cast into new prisons; tales of the danger of jewels were carved on the temple walls. They drew pictures of us with long noses, mad eyes and wiry bodies. Some said they pitied us and wanted to cure us with their stones.
And that was when we decided we had nothing to lose. We could see they needed us as much or even more perhaps than we needed them. That our travails were worth the struggle. That there was a different vision…
I wish I knew the ending of this tale. We are where we are. A few of us have stolen in and preach - but more importantly try to act out the kindness we have learned - in the market place. We are still isolated and often alone. A few of us have managed to set up stall, and a few of us have exchanged our jewels – albeit it at a lower price than their true value. We do this to spread the news. No, that sounds too religious. We cannot do anything else any more.
It is not easy. But we are beginning to meet more regularly on the hillsides. And every time we do, we feel ourselves strengthened. And we notice that our jewels glow more brightly.
We know there are many still on the edges of the towns, setting up temporary villages. We know there are more yet still in the valleys and the caves. But we know too that the Jewel Merchants are journeying as we speak, that they – we - bring something more valuable than all stories, all words and all separateness. Let the tale and jewels be shared.
© David Gilbert, 2017