Peng

You’d be forgiven to think “Peng” is a Chinese name (I think it is), but in Germany ‘Peng” is what a balloon ‘says’ when you stick a needle into it. Which is what Angela Merkel did to the opposition leader and their leading candidate Martin Schulz over the past few weeks. The way all this was translated into the title of the latest edition of the Stern magazine is really brilliant, I think. And the expressions on the faces of the two contenders are just priceless.

I’d like to stick a needle into this balloon that says ‘rehab for sABI survivors is a waste of scarce resources’ and deflate it. It’s an argument that was used in Germany 25 years ago when a father set up a hospital to help his young daughter to recover from her severe brain injury.

And recover she did. PENG!

Pádraig had a brilliant and eventful day. His physio from Ireland is here too working with us for a week. It’s such a positive, can-do approach, hard work, huge efforts – but great return.

Schwarzwälderkirschtortenstück

Sure what else would you have but a Schwarzwälderkirschtortenstück in the Black Forest?

All meaning that we arrived. We got here. Exhausted but ok. We had what the Germans call “Abendbrot” the term itself indicating the distance between German and irish evening meals. But we all enjoyed it a lot. Pádraig had some especially minced meal, followed by a piece of cake, followed by a few strawberries, followed by a full glass of Apfelschorle.

We met the other Irish family that is here at the moment, leaving at the end of the coming week having that Abendbrot. It was good to catch up and to hear how they had been getting on.

Pádraig then had a shower and went off to bed, to rest before an early start and a busy day tomorrow. We’re about to follow him!

Paris

Paris – oh Paris! To be honest, we are a little bit in the not-so-attractive outskirts right beside a motorway in an IBIS Budget ‘hotel’.

Just now we managed to sit down (thought there isn’t really that much space in our ‘room’ to sit down:) and we are absolutely and completely exhausted.

So it’s ‘bon soir’ for now!

Vive la France

En route to France on the Oscar Wilde whose cabin doors, as it turns out, are just that little bit too narrow for a wheelchair.


Though they made an exception and gave Pádraig, just this time, a special cabin at no extra charge – just this time. Not sure what we’ll do on the return trip…

We’re just loosing sight of land so I’ll better post this now!

Ahoi, Dreamboaters!

PS: news about today’s viewing of “An Saol on Sea” and, separately, of our meeting with the HSE tomorrow. – All good and exciting stuff!

An Saol on Sea

It’s late and another crazy day is about to finish. Tomorrow is going to be even better.

I was in Limerick today for the oral PhD examination, the viva, of my last PhD student. It was such a pleasure to follow her presentation and the way she handled the questions and the discussion with her examiners. It moved me to bit to hear the external examiner who had come to UL from the University of Salamanca saying that he was honoured and proud to be at the cradle and the world centre of localisation teaching and research. The last time he had been here he was still a Masters’ student attending our localisation summer school…

Hardly spent time with Pádraig today. He was in good form, enjoying the good weather and getting ready to go to Germany tomorrow via Rosslare, catching the boat to France and then driving to Germany over two days.

Tomorrow morning, just before we’ll have to leave, I’ll be having another meeting with the HSE.

While a group of supporters and (potential) funders will be checking out the Bray Head Hotel – or: An Saol On Sea: SMARTlab at the Lighthouse Living Lab. Wouldn’t that be absolutely mad, weird and wonderful? Bringing together sABI survivors, technologists, musicians, therapists, artists, researchers, carers: Dreamboaters of the World Unite!

Sometimes you have to be mad to make the most incredible things happen. This would be big. Real big. A game changer.

 

Columbus

Ok, it probably wasn’t him but the Irish monk Brendan who ‘discovered’ (whatever that means) America. Or was it the Vikings?

What is for sure though is that it was him, Christopher Columbus, who said something worth of a Dreamboater:

 You can never cross the ocean until you have the courage to lose sight of the shore.

The past few years have felt like as if I had been preparing for this journey. When I would loose sight of the shore. When I would truly believe that this ‘boat’ would really float. When I would go on board, cut the ropes and sailed away.

What is the use of playing it safe, doing what you’re expected to do, making yourself dependent on other people’s expectations, complying, when, in reality, the wise Columbus-like decision would be to forget about any ‘baggage’ and do what needs to be done.

Have you done this before? Does it require courage? What difference does it make?

Root’nBranch

What a beautiful day! Wow! And where else would you enjoy it but in the National Botanic Gardens! Which is where we came across this.

In our garden, the best we do is to cut the branches of daffodils and tulips. The pros in the Botanics, being pros, go for the root ‘n branch approach. And since this has been referred to so often in the media here in Ireland recently (though not so often in the context of flours and the Botanics), I became curious and looked up what it actually means, “root ‘n branch”. Here is what I found:

a. (adverb)
entirely; completely; utterly
b. (adjective)
thorough; radical; complete
Related adjective: radical

I think I like the idea behind this.

There were some other, really brilliant news today: Both Prof Fins and Prof Goodman agreed to become Advisors to the An Saol Foundation! Prof Joseph J. Fins is the author of what I’d call the ‘bible’ of severe acquired brain injury and its ethics, “Rights come to Mind – Brain Injury, Ethics, and the Struggle for Consciousness”; Prof Lizbeth Goodman is a long-standing supporter of people with disabilities and particularly active in assistive technologies. I don’t think I could overestimate the incredibly valuable contributions those two world-leading personalities will make to the cause of the An Saol Foundation.

Footwork

Pádraig’s got all the foot and legwork under control he’ll need when to walk: he can lift his foot up front and back, and he can move his legs forth and back – even against resistance which is, as we know, futile:)

Here are two really short clips recorded today. Looking at this out of context it’s not really that spectacular. Knowing the effort Pádraig put in to get to a point where he is in control of his feet and his legs, this is pretty extraordinary, in my mind.

First off: the footwork.

 

“The best ever” is what Pádraig’s physio remarked when he moved his leg back today when sitting in his wheelchair ‘swinging’ his legs.

 

His physio also asked him how many people were at his ‘party’ yesterday and he ‘bleeped’ 13 times – which is what I would have said. And I’m sure, as he was pressing that switch for each of his friends who had been with him, he was thinking of their names and seeing their faces in his mind.

All Dreamboaters.

Party

It wasn’t really a party but it was a great get together of Pádraig’s friends who joined him to celebrate his upcoming birthday for which he won’t be in Ireland – but in Germany for another four weeks of intensive therapy. (Pity An Saol isn’t up and running yet.)

It was a really exceptional afternoon. In so many different ways. With so many really exceptional people. I think I mentioned before that Pádraig once wanted to set up a new country off the west coast of Ireland. His friends here today would have been the people to he would have loved to live with him in this country, full of fun, empathy, and love.

Fly

Connected Pádraig’s telly to chromecast (again!) so that we can now do stuff on the internet, watch movies, or play games on the ‘big screen’.

I never really had used Google Play to look up movies and was surprised to see some quite recent movies for not too much money. Just to see how it worked, I bought “My Scientology Movie”, describe by Rotten Tomatoes as “stranger than fiction” – because it looks like an interesting ‘documentary’ and because when some of Pádraig’s friends visited yesterday we were talking about their really expensive and luxurious looking Dublin Headquarters and the fact that I had heard that as Tom Cruise had reached the highest level of enlightenment, he can fly. Tom Cruise can fly. In fact, he is, as I was told, so enlightened, that he doesn’t even have to show the stuff he can do. He can just do it.

One of Pádraig’s therapists proposed a few things to him, things he should do while in Germany. Starting to write. Eventually a book (that therapist is very curious about finding out how Pádraig has perceived what is going on around him), but first a few practice runs at spelling sending text messages.

And if you want to text what do you need? – Right! A mobile phone. He should have a phone anyhow, said the therapist. He should also start using his Facebook account more frequently.

Someone else told us to buy this (Chinese) machine that stimulated muscles by sending very tiny electrical current through the muscles, and to use that for maybe 15 minutes everyday in order to ‘wake up’ muscles Pádraig hasn’t been using for some years now. Sounded like a really good idea. And so we did and started to use it. Pádraig says he likes it. I tried it myself and will try it again – it’s an interesting feeling.

Pádraig and I will be here on our own next week (until Thursday) and I have told him that we will go out and do something every afternoon. I’ve been thinking of going to a museum, watch a movie, go to a play (if there’s one on in the afternoon), or go to a concert (again, if there’s one on in the afternoon). He’s easy, he says, and doesn’t mind what we’ll be doing first, he’d be happy to do any of these things – which tells me that we should be doing ANY of these things much more frequently.

Finally, we’ll be having a get-together tomorrow afternoon to pre-celebrate (a little) his birthday as he won’t be here for it and to say ‘good-bye’ to friends for a while since we’ll be going to Germany this coming Friday. Feel free to join us!

Pádraig won’t fly – we’ll be taking the ferry to France:)