It was my first time at a Coroner’s Court. The Court sat today to determine the cause of death of our dear friend Sara Walsh who passed away on 17 June 2015. We first met Sara in Beaumont Hospital where she shared a ward with Pádraig. Following an ABI in Beaumont she was the first to go to the neuro rehabilitation centre in Pforzheim and made great progress there. Her death left us all devastated, most of all of course her parents and family who have been great supporters of An Saol. There are many things that could be said about today’s sitting and the testimonies given there – none of them would make a difference. Sara will always be with us.

As part of it series “Ten Things You Need To Know” the Irish State Broadcaster RTÉ One tonight showed a programme about brain computer interfaces and brain technology in general. Check out especially the last five minutes or so of the programme featuring Pádraig flying a drone in the Wicklow Mountains!

https://www.rte.ie/player/ie/show/10-things-to-know-about-30003660/10805890/?ap=1

Ready to roll?

In my second job here in Ireland, at around 4.30 in the afternoon, when everybody was really relaxed and getting ready to go into the weekend, I past by a colleague’s cubicle. He looked up as I was passing and said, “how are you?”

What happened next was not what he had expected. Asking someone in Ireland “how are you” is like saying “it’s a grand day today, isn’t it?” This question doesn’t really require a response. It’s like acknowledging the other person and saying “hello”.

Well, I sat down. And I told him how I was that quiet Friday afternoon.

Thirty years later, when someone asks me that question, my response is “Great! Couldn’t be better! And on a day like this!”

Was I a more honest person then? Have I adapted more to my chosen “Heimat” today?

Pádraig went with us to visit two very sick people in hospital today. Each of them is, in their own way, fighting for their life. As he was, four years ago, when we had just arrived in Germany for what we thought were going to be a few weeks, maybe a couple of months, but not more. Those weeks leading up to Christmas and into the New Year, I thought, could push me over the edge. They didn’t. In a way, they prepared me for what was going to come. I was ready to roll…

It’s late and I’m tired after a busy Saturday with no carers. That’s when I do the work of about four people or so who would usually work with Pádraig over a day. For the first time ever, I managed to organise the shower just on my own, with Pádraig helping. Something unthinkable not too long ago. It was also a day when I realised how much progress he has made with eating and drinking. Not just the amounts, or the consistency, but also the confidence with as good as no coughs. This evening, he had the best homemade food anybody could wish for, prepared by our friends and left here to help us getting over what are difficult and complicated times. More than usual.

When he finally managed to fix what had always bothered him about his appearance, he completely lost his mojo. That special thing about him suddenly disappeared.

It could be that whatever I find to be the most annoying aspect about my personality, about my appearance, about how I think I present myself, is my most valuable mark. I take it away and I’m just like anybody else.

The secret is to be who you are. Rather than wanting to change who you are, be it.

So far, this is mainstream popular psychology.

Tonight, I’ve been thinking: how does that work if you changed from one second to the other? If, because of an accident, you become, to the rest of the world, someone else, without really being someone else?

When the German OT had successfully tried this out with Pádraig in the summer, he decided to give us a loan of the button and joystick. Eventually, I managed to find and download the software and set the switch and joystick up on Pádraig’s computer. We were all taken aback by his ability to move the snake around the screen in directions we asked him to move it.

If we manage to give his arms and hands the right support, he is able to move the joystick (and thus the snake) into whatever directions he wants to move it to, starting the game by pushing the button. It’s really about us supporting him in the right way. Not about him having the ability…

The other day a briefly talked to someone about my experience of time over the past few years. I forgot to say that I really have lost the ability to experience time. Never thought that was possible. I know that it exists as a concept for most people whose primary experience of it is that it passes. It’s a linear experience. It comes from somewhere, the past, and is consistently moving to somewhere else, the future.

I am not moving along anymore. It’s as if time was just there and I’m in it, stationary. It’s not as if nothing was happening, to the contrary. Loads of things are happening. But they are happening within this time capsule, this ever lasting moment that I am captured in. I can’t think of the past because it mostly breaks my heart. I can’t think of the future because I feel that is futile and far to accidental to think about.

So here I am: I feel energised. I feel tired. There are happy moments. There’s incredible sadness. All in this one moment.

Patrick had a great morning with a relaxing massage, a good SLT session, and afternoon with music therapy. He’s keeping himself busy. Smiling when there’s banter and when he is having you on. Or feels that you are. His humour hasn’t changed at all.I must ask him about the Dreamboater idea. The Alaska dream. The road trip in a camper van. His dreams. His experience of time.

The Board of the An Saol Foundation decided this evening to press ahead with the FABrík! Funky, cool, pure brilliance!

Pádraig today was doing really well during his physio session. He went down on a floor matt again and was working out real hard. The thing is: he enjoys it and sees that his training is paying off.

Here’s a thought and I’m not sure what you’re thinking about it:

Broadly speaking, and there is no black and white, but let’s say in general, those with a severe acquired brain injury in Germany get the treatment they need. If there is a court case that is used to decide which insurance is going to pay for that treatment.

Broadly speaking, and there is no black and white, but let’s say in general, those with a severe acquired brain injury in Ireland get the treatment they can pay for, especially if there is compensation. If there is a court case they will get the treatment they require. If there ain’t then they won’t even get a detailed rehabilitation plan, never mind the appropriate treatment.

Would you agree that this is wrong?

So we’ll change it. We’ll show how it can be done in a just, equal, caring way.

Pádraig gets his voice going by starting with a big yawn. Wikipedia says that “a yawn is a reflex consisting of the simultaneous inhalation of air and the stretching of the eardrums, followed by an exhalation of breath. Yawning (oscitation) most often occurs in adults immediately before and after sleep, during tedious activities and as a result of its contagious quality.”

Exhalation of breath is what you need to blow bubbles and to make a sound. Makes all perfect sense. The rest is ‘just’ practice.

Try it.

You might know the parable of the ten virgins. In today’s reading they were not called virgins anymore but bridesmaids. In any way, the point is that five of them were wise, the other five were foolish. The wise (let’s call them ) women were prepared and had enough oil to keep their lamps burning to welcome the groom and escort him to the wedding. The foolish women went off to get more oil, missed the groom and were not let in to the festivities. The moral: “Watch therefore, for you don’t know the day nor the hour in which the Son of Man is coming.”

If you ignore the fact that the wise women didn’t share their oil with the others and didn’t open the doors for them to let them in – then the point of this parable isn’t a bad one.

Don’t bee foolish.

Pádraig had a good day today, with carers helping him in the morning and good friends coming for a visit and a chat in the afternoon. Together with the now usual Thursday visits, his friends are really sticking with him. And each time they visit, he is having a great time, participating in live, laughter, humour, news, whatever is going on. To realise how important this is, you just have to imagine the opposite: being alone, isolated, left behind.

Today, twice, Pádraig had meals that were not minced. Among the food he had (cut into small pieces) were sausages, chicken, vegetables and potatoes. And he ate this without any problem. How small things can make you happy!

There are some big days with ‘firsts’. Today, it was one of those. A really big achievement that on first sight might not look that impressive. In fact, it looks tiny.

Pádraig’s weak side is his right, things he can do with relative ease with his left, he has trouble doing with his right. Stretching out his leg when lying on his stomach is not that difficult for him when he does it with his left leg. But he hadn’t done this, stretching out his leg, using his right leg. Today he did it ten times in a row. You have to look closely to see what is going on here.

The point is that once he can do it a tiny little bit, he knows that he can control that movement. The rest is ‘just’ practice. The absolutely brilliant thing is that it is him doing it. There’s nobody helping him, nobody supporting that movement, he is in control. Why is he doing it? – There are many reasons, one being that this is a movement similar to one he’ll do when he’ll be walking.

So this is like a first small step.