Something really interesting, not to say amazing, happened today – almost like a textbook lesson on severe acquired brain injury.
Someone working with Pádraig had been using his switch to allow him to communicate with them. Last week, they had used the switch to spell relatively long, relatively complex words. There was quite a bit of excitement about how well Pádraig was doing.
Today, though, it looked like as if Pádraig wasn’t ‘able’ to use the switch as consistently and reliably as last week. It looked like as if he didn’t manage to concentrate or, maybe, had physical problems coordinating his foot movements to press the switch when he was expected to do so.
Well, until the person decided ‘to get to the bottom’ of the ‘problem’. It turned out that there wasn’t really a problem at all – at least not the one expected.
Through a series of very detailed and targeted, double-checked questions (and answers!) they established that there was no physical problem at all. Pádraig told us very clearly and unequivocally, that at times he just doesn’t feel like answering. We didn’t have the time today to fully explore those reasons in detail but they seem to be similar to the ones you and I would have: not feeling like as if we wanted to have a conversation or to answer questions, when someone other than ourselves decided, for not always obvious reasons, that we should answer what at times sounded like pretty arbitrary questions… if you know what I mean.
To be honest – I wasn’t *that* surprised, but for the person working with Pádraig it was a revelation, I think, that he was fully there – not just able to complete ‘tests’ but to decide what it was that he wants to do and what he is interested in.
In my mind, the experience of that hour today should be written down, included in a textbook, and be used to teach persons working with survivors of severe acquired brain injury (sABI) as an illustration that they are dealing with real people, with interests, opinions, moods, feelings, quirks – all those aspects of a personality we would expect generally, but find difficult to accept when we are dealing with non-verbal persons affected by an sABI.
This day, two years ago, I was leaving Hamburg, driving towards the Autobahn to visit my mother when I received a call to say that she had passed away. She must be watching over us and, especially, ‘her’ Pádraig!