Big Fat title explained (credit the talents of Gary Burbank)
At the time of a stroke you believe in the medical staff because they are the only people you have to believe in.
In the first three days of my sentence at the hospital, doctors, junior doctors, nurses, demi-nurses, student nurses, physiotherapists and people who delivered the food always said:
“With therapy, if you work at it, you’ll get your voice back. Work on that arm with exercise and you’ll get the use of the arm back. Chin up, try not to drool, stiff upper lip.” They made it sound like a few good sessions and you’ll be back to normal. The mendacity of the message looms large now. It was all based on lies.
But you tend to believe the taradiddles, because that’s all you have to believe in. They’re the experts. You are in a place where science is king, where knowledge is learned by empirical evidence. They’ve seen it happen.
They can’t be sure.
As I said earlier it’s designer disease. You have someone like the author Jilly Cooper who said of her stroke: “suddenly I went sideways and something very odd happened. About five minutes later I felt perfectly all right.” It was a slight stroke, known as a TIA, or transient ischaemic attack. Under a cloud of silvery hair there’s a long curving scar on her neck. “They just cut you open and scrape the artery,” Cooper enthuses. “I’m de-furred. I don’t want people to think I’m ill. I’m not.”
The young bon vivant, an excellent writer (my blogging inspiration) and general good guy, Dom Pardey had a stroke which paralyzed him and he lost a good part of his sight. “My brain can no longer control the movement of my eyeballs which is apparently technically called a nystagmus . This combined with occasional bouts of double vision has meant that reading is pretty much impossible unless the font size is about 30 and even then it is a challenge to read unless the line spacing is double,” is the way he put it.
Me? I’m somewhere in between.
In sessions with the student physiotherapist I learned that I could not drum my fingers on the right hand against the table, but with practice I could do it the next day, slowly but surely. They were right! With applied physiotherapy I could retrain my brain.
The next thing was to hold a pen – I could barely do it, and to write I struggled to make an X, making a lopsided figure that had lost it vertical identity and lay forlornly on its side. The next day I produced the same, and day after, and the week after, and a couple of months later, the same.
This is demoralising to a writer who prides himself on owning several fountain pens, using them at every opportunity, flowing blue-black ink into words in journals that became novels (unfinished), essays and letters before being typewritten.
You see the lie of the stroke unit? They give a fabrication that things will be just like they were. They try to build a new foundation for people with strokes based on their probabilities that in a perfect world everything will be all right.
But people who’ve had stroke are people who are entering a strange land where they are denied freedom of speech and freedom of movement and there’s no appeal to the court of human rights. I suppose the lie has its humanistic flavour, but it’s still based on a lie.
I believed it – for awhile.
Consider a part of this poem by Dom Angear written for Dom Pardey:
To realize, though painful and oh so frustratingly slow
You can crawl beneath the razor wire and go.
Inexpressible rage at this eternal nearly stage
Balancing an elephant on a razor blade
Intangible progress stinks, nothing to do but think
Through Physio reinforced will , you can make those new links
Plough on through relapses, keep re-routing synapses
Forging new paths, machete in hand
Like ants linked across a chasm, to the promised land