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.

I had hear of Feldenkrais but didn’t really know what it was until a Feldenkrais ‘master’ today worked with Pádraig on improving the connections of his body with his brain. I couldn’t find any reference of it being used to help survivors of brain injury, but the approach makes sense. Whether it works, we don’t know but will find out over time, I suppose. Pádraig seemed to have enjoyed the session today.

In the morning, we had been at the funeral of our friend, Gabrielle. One of the readings was a section of Ecclesiastes (3) The Byrds had used for their song “Turn, Turn, Turn”: “To every thing there is a season, and a time to every purpose under the heaven”.

I had a meeting with an architect who will drive the development of the An Saol premises in the Players’ old tobacco factory. I’ve been thinking about a name or the building and thought that “FABrík!” would be a great name for this fabulously funky tech playground that will support survivors of severe ABI to recover their function.

What do you think?

Thursday, 30th of November 2017

The Parish of Our Lady of Dolours

Mulled Wine, Mince Pies, Hot Chocolate and Marshmallows

ADMISSION FREE

With donations in aid of
CARING FOR PÁDRAIG
gratefully accepted

Our neighbouring parish decided this year to organise a raffle at their annual Winter Songs by Candlelight to support “Caring for Pádraig” which is so incredibly generous that I honestly do not know what to say… It’s the Parish where we got married a few years ago and it will be a great honour to join the Parish on that evening for what, no doubt, will be a brilliant night of song and good company.

Sadly, we also had some bad news. Last night, Gabrielle Carty, one of our longest family friends and former DCU colleague, died. We have so many good memories of brilliant times spent in her company, memories that will always stay with us, as will she herself!

When the An Saol Foundation applied to the Revenue Commissioners to be registered as a charity, the foundation was told to register with the Charities’ Regulatory Authority (CRA) first. When we did that, we were asked to fill in a questionnaire which had to be amended several times until it finally met the requirements of the CRA. When we then applied, again, and many months later, to the Revenue, we were asked to modify part of the information we had provided and which had been accepted by the CRA and check with the CRA whether they were ok with it. Once that’s done, we need to make a whole bunch of internal changes. And then, finally, we hope to have all the magic numbers, the CRA and the Revenue charity numbers, together.

Sounds boring, complicated, complex, and repetitive? – Yes, it does. And it is.

About two weeks ago, a report was published and widely reported on in Ireland stating that almost half the people in the country do not trust charities.

It also found that 83% of people think charities will have to be more transparent about their spending, while 60% said wages in the charity sector are too high. About two-thirds of respondents, 64%, say there are too many charities with similar functions and roughly the same proportion (68%) say such charities should merge. Broadly, the same share of those interviewed (68%) think charities should hire the best professionals available. However, only 41% feel that charities should pay competitive salaries for these professionals, while 64% of people believe most of the work carried out by charities should be done by volunteers. (The Irish Times, 26 October 2017)

Which explains why the authorities are making it increasingly difficult for organisations to register as a charity.

Sounds boring, complicated, complex, and repetitive? – Yes, it does. And it is.

Finally, something that is the antithesis of boring, complicated, complex, and repetitive. Pádraig’s new assistant is doing what I had heard about so often and always meant to do, i.e. making the service of daily health care and personal hygiene part of his daily rehab effort. While I often ask Pádraig to help me by lifting and arm, a foot, or a leg, I often do not wait long enough to give him a chance. Since we have started to wait, to be more patient, and to give him a real chance dressing or eating or washing will never be the same. It will only happen with his determination, his help, and his support.

Sounds marvellous? – Well, that’s because it is!