I have just come back from the grandly dubbed ‘World Health Innovation Summit’ in Carlisle, organised by the irrepressible Gareth Pesach and Amir Hannan.
I met new friends, heard inspiring speakers and had a blast (though I don’t recommend staying at the County Hotel!)
But the best bit was this: Katherine Rutherford, an inspiring entrepreneur and founder of Happy Mums Foundation (@happymumsfdtn) came up to me after my talk. She said that my presentation had given her renewed hope. This short blog is for Katherine.
After decades in this strange game of patient and public engagement, that small moment means more to me than being rich or famous – both of which neurotic tendencies are slow to fade.
I am not sure whether it was my story of recovery that helped fuel hope. Or the way in which I had framed the familiar frustrations of trying to change things as a service user. Maybe she felt acknowledged. Or perhaps it was about the hope engendered by a service user becoming a Patient Director. It doesn’t matter.
I remember precisely when I lost my hope. I had been ill and wanting to die for two years before I was admitted to a psychiatric unit in Barnet, North London. During my first few days, I was put under ‘close observation’, which means a nurse trailing you 24/7.
At one point I lashed out and was ordered to a small bare pink painted room with a mattress on the floor. The nurse sat outside doing the crossword. Surely there was no further to fall (though I was later proved wrong). I felt utterly abandoned, emptied and hopeless. Words are impossible. Though, the following poem gets close.
I’m curled into a ball
on a thin mattress on the floor
covered with a crinkly nylon sheet
smelling faintly of sick and piss.
Outside the heavy brown door
sits Len, muscly, tanned,
with the Mirror crossword.
Not much older than me,
he’s done his fair share
of hurtling down corridors
readying needlefuls of Depixol
to slam into the arses of lunatics
like me I suppose.
As my sobbing slows,
I hear him humming tunelessly
clicking the end of his pen:
‘Mate, your mum said
you didn’t use to be a dickhead.
Let’s see. Try this for starters:
French for dead-end, 3-2-3?’
I don’t know whether he’s
smart enough to be taking the mick
but I’m damned if this mad man
will ever tell him the answer.
There is more belligerence in the poem’s last lines than I felt at the time. Poetry can do that.
Later, I stumbled to the hospital canteen. While slumped on a plastic chair, I watched a man lead his small child by the hand to the service area: ‘I will never be a father. I will die in this place alone’ were the words in my head.
There were many moments like this during my six years of illness. Few so poignant now.
I write this on a sunny afternoon 25 years later, as a husband and father of two boys, having just made a speech at a national conference, about being a Patient Director. And every time before I get up to speak at an event, I visualise those two moments of seemingly irreparable hope.
Things can change.