Everything that is possible demands to exist.
Gottfried Wilhelm von Leibnitz
Gottfried (1646–1716) was a German rationalist philosopher, mathematician, and logician who in 1703 published an article in French called Explication de l’Arithmétique Binaire. This short article is widely cited as having made known the binary concept of on or off; yes or no; 0 or 1. Gottfried later noted with fascination how his system corresponded to the much older Chinese I Ching which he had been made aware of through the French Jesuit Joachim Bouvet.
A German philosopher publishing in French later referring to an ancient Chinese source. All happening around the 1700s.
Later, of course, the binary system was picked up and developed to operate computers, including the ASCII system, and to design autopilots. Many more scientists are now credited with its development.
So Gottfried, although unknown to him, had not really invented the binary system but is now credited with its invention because his article made it widely known. A bit like Columbus not really discovering the Americas, but making them known to the Europeans.
Pádraig communicates mainly with a switch, also with thumbs up or down, tongue left or right. Not necessarily, but mostly, binary. It’s yes or no. Binary. Closed questions.
It took me a long time to realise how complex that simple looking system is.
Imagine you are eating your dinner, with someone helping you along. At some stage, someone asks you, “Would you like an ice cream?“
This is a typical dinner situation with Pádraig. I help him with his dinner and, when the plate is empty, I ask him whether he would like an ice cream for desert.
Put yourself into Pádraig’s situation.
If he answers ‘yes’, that’ll most likely be the end of his dinner and he’ll get an ice cream. There is no chance for him to ask for more dinner; it’s finished because the plate I filled up is now empty. He might like something with his ice cream or no ice cream at all. But he might still be hungry and decide to go for the ice cream rather than not having anything else.
If he answers ‘no’, that’ll also probably be the end of his dinner, when he might still be hungry. But he is not given a chance to opt for more dinner or a different desert.
So the answer to that simple question might have little to do with him liking an ice cream for desert, but with all sorts of other consideration which I all eliminated by not asking the right questions in the right order and only leaving him the option of a binary response.
And this is a simple example.
Many people ask him ‘negative’ questions, such as “You wouldn’t like that, would you?” A ‘yes’ or ‘no’ answer could be interpreted either way.
You might remember that Pádraig said, when Trump went on the campaign trail, ‘yes’ that he liked him – and it took us a week to figure out that he liked him not because he would support his politics but for his entertainment value (which rapidly faded once he got elected).
One day, Pádraig said he did not want to go for a walk with me – which left me surprised because he always likes to go for walks. Until I figured out that he had heard that I wasn’t well at the time and he didn’t want to put more strain on me.
Pádraig can take decisions for himself. Of course. But it takes a lot to be able to understand him, interpret his decisions and to support him in his decision making process. It’s never as simple as ‘yes’ and ‘no’.
It took us eight years to find out that the Central Remedial Clinic (CRC) in Dublin have a Night Positioning Clinic. Hard to understand that no one told us about this when positioning is one of the most important issues for someone who cannot move themselves.
It took a bit of time and effort. But last week, Pádraig had an appointment. For him, and us, it was amazing. The therapist was very experienced and really knew what they were doing.
We are now looking at a number or a combination of systems, among them from Symmetrisleep and the Snooze Night Positioning System.
The main concern is that his hips are positioned correctly and that last year’s issue will not return.
What amazed me most here is that all these issues and how to remediate them are well know and understood, but nobody shared their knowledge with us or offered help when Pádraig desperately needed that help. For example, it seemed that the therapist in the CRC was well aware of the procedure (percutaneous mysio fasciotomy) that helped Pádraig so much last year.
Earlier on in the week, Pádraig also had another appointment with his wheelchair clinic. The agreement now is that Pádraig is exceptionally tall and will need a wheelchair built for an exceptionally tall person. As this is not available ‘off the rail’, it will have to be built for him.
An obvious conclusion, really, just that it took a long time to reach.
Something else did not take a long time at all. And it shows how much difference a bit of initiative can make.
There is this really beautiful walk in Leitrim around a lake. The problem was that at the end you had to cross a little bridge, but you had to get up a few steps. It was a matter of getting a few strong hands and lifting Pádraig up those steps onto the bridge. One message and less than a week solved the problem.
This happened in what Pádraig used to call ‘the middle of nowhere’. Five stars!
This week’s lessons? Life is not binary. ‘Yes’ does not mean necessarily ‘yes’ and ‘no’ does not necessarily mean ‘no’. The best of care and the most attentive help might be available in the middle of nowhere where you might expect it the least.
Everything that is possible demands to exist.
