This was a very different mass. Most of the people attending tonight didn’t seem to know what was going on, despite the introduction provided just before the mass started by someone who was in the know.

It had taken me months of preparation and hard and dedicated study to become an altar boy the best part of 50 years ago. Back then it wasn’t just the ‘moves’ it was also the words, pretty long prayers to be recited between the priest and the altar boys that I had had to learn off by heart. In Latin. – And just when I had learned it all and was ready to go, someone somewhere in the hierarchy decided that enough was enough and that from now on, everything was to be said in German. You can imagine my disappointment!

Tonight I travelled back in time, beyond the birthday of most of those attending. Not sure what to think about it.

The mass was read to remember Pat’s cousin’s family, especially her cousin and her nephew who died a year ago under very tragic circumstances, making headlines in the papers and on Claire Byrne’s TV show. It was a death that should not have taken place. One that make you think “when will they ever learn?”, “where are all the flowers gone?”…

For some reason, I feel beaten today, wondering why on earth people have to die when they shouldn’t have to, why on earth young people are still being ‘managed’ in nursing homes, why on earth we hit a new record of 612 people on trolleys in hospitals  waiting for a bed, why on earth there isn’t a revolution in this country ending all this non-sense of blaming the flu, blaming the system, blaming the previous government, blaming Brexit or Trump?

I feel beaten with no energy left to argue or to fight. It’s so useless. To argue. To fight. The only useful thing to do is to do it myself, ourselves, and to show to the rest of the world that there are better ways to create a civilised, fair, equitable, caring and transparent society.

Liberally quoting what they say on those cooking programmes… Here is a piece I wrote earlier.

I always liked Janis Joplin’s song Me and my Bobby McGee. It couldn’t get much better than Freedom’s just another word for nothing left to loose. Freedom meant just getting rid of ‘stuff’ that was nothing but a burden. Freedom also meant being totally and completely and utterly independent. The idea was to follow your feelings (as opposed to anybody else’s), anything else made you a prisoner of circumstances spiralling out of control, tying you in to a straightjacket.

I didn’t really look at getting married, getting a house and having children – like in Pete Seeger’s Little Boxes song – as a step closer towards freedom. How could I decide where to go if that decision was no longer really mine? If everything had to be decided together and was dependent on a myriad of factors completely beyond my control?

When I did get married, had children, bought a house, even got a full-time permanent job, practically selling my soul to the company store, so to speak, life certainly changed. There were certainly fewer options. At times it felt as if there were none.

But as our family grew and as I realised that I was now ‘on the road’ together with some other people (!), that we were going to be on this journey together for the next while and that we all really needed, wanted, and loved each other – I did not miss this freedom anymore that is defined by ‘nothing left to loose’. In fact, freedom is not at all defined by what you haven’t got, but by what you have, by the people who are travelling with you on this voyage – no maps, riding out the storms, sitting out the doldrums, working together, learning to cope. Life is an ocean, love is a boat. The Dreamboat.

Pádraig (and us) are getting back to the normal routine after the Christmas and the New Year. Getting up early, going through the stretches, the exercises, going our for a walk, visitors, carers coming and going, structuring his day. We’re all tired tonight and it will take a few days before we’ll get used again to the ‘routine’.

But we have tons of stuff to luck forward to: from a walk down Santiago Way, to the start of the An Saol Project (fingers crossed), from brilliant concerts to good company, from mad adventures to insane fun!

Come with us!

PS: Life is a struggle, as well as a voyage. And at times it feels like I’m not winning. Like tonight. Though I know, it’ll be a different day tomorrow.

I just did it for the pictures. What other reason could you possibly have to meet up at 9 am on New Year’s Day at the 40 Foot to go for a swim? It was still dark, it was quite windy, there was a bit of a swell, and it was really cold! Luckily, the water was a bit warmer than the air! – 9 degrees celsius versus just 3 degrees! I was on the lookout for icebergs.

In the end it turned out that this was the best thing I’d ever done on New Year’s Day! It was brilliant ice-coldplay! Pushing myself to do something I’d never done before, something pretty mad and insane felt like a great start to the New Year! And I would never have done it without the company! Tonight, I’m happy to say that I can feel my feet again (just about) although I think my body is still in a slight state of shock.

DCIM100GOPRO

DCIM100GOPRO

DCIM100GOPRO

DCIM100GOPRO

DCIM100GOPRO

DCIM100GOPRO

DCIM100GOPRO

DCIM100GOPRO

DCIM100GOPRO

DCIM100GOPRO

DCIM100GOPRO

DCIM100GOPRO

DCIM100GOPRO

DCIM100GOPRO

DCIM100GOPRO

DCIM100GOPRO

DCIM100GOPRO

DCIM100GOPRO

DCIM100GOPRO

DCIM100GOPRO

DCIM100GOPRO

DCIM100GOPRO

DCIM100GOPRO

DCIM100GOPRO

Tomorrow is a public holiday in Ireland, Tuesday will be a ‘normal’ day again. We’ve been spending a lot of ‘lazy’ time together as a family over the past week, really relaxed. I feel like as if I were about to explode, don’t think I’ve ever eaten as much in my life as I did over the past week. What a great change this has been compared to the past few years. We met family, friends, and neighbours and it was life back in a great community.

But we’ve also been planning the new year. Things we want to build into Pádraig’s daily and weekly routine to achieve his goals of being able to participate more and more in activities of daily life. We’ve been looking at possible trips for the coming year. We’re not there yet, but even being able to do this is a big change.

In a world that changes at the blink of an eye, there is one constant: the Vienna New Year’s Day concert. Seeing it and listening to the Blue Danube Waltz as well as to the Radetzki March made me feel as if I was sitting with my parents back in Dortmund, my father smoking one cigar after the other and my mother worrying about what the smoke was going to do to her white curtains – in those days nobody was worried about what the smoke would do to your lungs. Today, I made new memories to this music with Pádraig. Neither of us smoked, the curtains were wide opened, and the sun was shining outside!

What’s the new year going to bring? Can we influence this – can we design the future? Whatever it will be, we’ll continue the journey on the Dreamboat, we won’t accept existing boundaries nor a system status quo, and we’ll continue to play the non-zero-sum game of An Saol, of Life!

Happy New Year!

I used to party on the last night of the year. There was one New Year’s eve when we weren’t married yet and I wasn’t living in Dublin yet, when the pubs closed at 11:30 (!) and I refused to go home. So we went to the harbour, found a German freighter, managed to get ourselves invited, and spent a couple of hours in the great company of very happy German sailors and their great looking Irish friends. We had a great night!

We’re home tonight watching 2016 in review. Just back from mass with a real sense of community where Patrick now has made many new friends. Tonight a man collapsed right beside us. We called an ambulance but within seconds there were two nurses beside the man who knew him and his family and were able to talk to him and to reassure him. He was hardly able to speak but made it clear that he didn’t want his wife to be called to the church as he didn’t want her to get upset. – An elderly lady said to me, “you never know how the day might end when you get up in the morning”.

2017 will be Pádraig’s year. I’ve got a feeling this year’s for me and you. I can see a better time when all our dreams come true. 2017, here we come!

See you tomorrow at 9am at the 40 foot for a dip in the water!

PS: I will go out next week to get the Christmas presents I didn’t get:) 3 CDs by Dylan, Bowie and Cohen – all remembered in the 2016 review with Dylan, still alive, winning the Nobel prize and singing about Fallen Angels, while Bowie and Cohen sang about wanting it darker and Lazarus being in heaven…

We had a brilliant evening out at a friends’ house, having dinner that not even remotely resembled turkey or ham – a first for the last week! It was great to get out of the house, not having to cook ourselves (nor to do the clean up:), and to pass time in great company.

We are taking it easy this week, staying in bed a little longer in the mornings, going for walks, planning the next year – or at least thinking about what we want to do. All the ‘classics’ are there: loosing weight, getting fit, sleeping more and better, spending more time on what is important and less on what isn’t. But there’s also some ‘specials’: very concrete goals for Pádraig, clear objectives for An Saol, a loud message to society.

This time of the year has been the most difficult one, following Pádraig’s accident. Three years ago, we were emigrated because there was no bed, not at the Inn, but in the National Rehabilitation Hospital. Pádraig’s lung collapsed and he had three major operations and a complication that almost finished his life for a second and third and fourth time. Two years ago, he was ready to be discharged home – after a planned procedure to make his tracheostomy permanent, a procedure we just about managed to stop. Last year, he was about to be officially discharged from the NRH and we were worried about his health. This year he is fine, he is with us, he has not been in hospital since he was discharged a year ago, and has not been seen by a doctor for a long long time. That’s significant – as is the fact that his physical and mental condition keeps improving, a surprise for professionals who recommended everything between a nursing home and the end.

What’ll be next? Can’t wait!

Being German and all, I’d heard of mistletoe but up to today didn’t know what it is all about. For example, I didn’t know that Loki tricked the blind god Hodur into murdering Balder with an arrow made of Mistletoe, being the only plant to which Balder was vulnerable. Did you?

I also didn’t know that mistletoe has become part of the Christmas celebrations in many parts of the world:  a man is allowed to kiss any woman standing underneath mistletoe. Bad luck befalls any woman who refuses the kiss.

Which is where Justin Bieber comes in with his song – though you must endure the whole song to get to the bit with the mistletoe.

When we went for a walk with Pádraig through the Botanic Gardens, just a stone throw away from here, we also found out what mistletoe looks like.

No. These aren’t, although they very much look like, bird’s nests, but mistletoe – a plant that lives off the tree in which it settles. While it was regarded as a pest, it’s now recognised as an important contributor to biodiversity – and home to hundreds of animals. In Australia, 240 different birds, or 75% of the species, build their nests in mistletoe.

As you can see – the weather was beautiful here over Christmas and Pádraig got a lot of fresh air.

Next year, remember to kiss under the mistletoe. For good luck! (It’ll be hanging in Teach An Saol – the centre for persons with severe acquired brain injuries and their families!)

All the world’s a stage, and all the men and women merely players.
Is life just a game? With winners and losers? And what makes a winner, what makes a loser? For me to win, do you have to lose?

Yes, says the zero sum game theory.

By contrast, it will be the intelligent pursuit of self-interest, according to Robert Wright in his 2006 TED Talk, that will save our society, civilisation and humanity. Wright also called this “non-zero-sumness” — the network of linked fortunes and cooperation that has guided our evolution to this point.

Non-zero-sum games is what I’ll be playing next year. I don’t want to win to make someone else loose. Life is far too short for that. I want to help others to “win”, and I want them to help me to “win”, because as humans we married our fortunes together.

Pádraig finally tried out a new standing frame for the first time, one we had used in Pforzheim and which is particularly well suited to exercise his upper body.

Fantastic, isn’t it?

Oh – I’ve also promised myself not to play zero sum games with others anymore next year. If they insist that this is what they want to do, I’ll tell them that they’ll have to look for someone else to play. My time has become too precious to waste it on stupid games. What about yourself?

The song A spaceman came traveling by Chris de Burgh sounds like the script for the Arrival – a recently released film still playing here in Dublin where I watched it today. Sadly – it wasn’t me who made the connection but the father of a young man who was in Pádraig’s class in primary school and who I met in the cinema by pure coincidence.

It was he who made me think that the movie was, as crazy as it may sound, about Christmas. About the idea of ‘peace on earth’ and understanding. Even the fact that there were 12 spaceships sounded like an echo.

There are a number of themes in this film which made me think. Our concept of time as being linear with ‘their’ concept of time being ‘out of order’, circular.

In an article exploring the connection between Ted Chiang’s 2002 short story called Story of Your Life and Arrival, Nick Statt wrote that hidden under Arrival’s more palatable themes about overcoming cultural differences and uniting as one species is Chiang’s more direct message about learning how to appreciate life’s moments, to live outside the bounds of time.

The underlying question is: If we could see our lives laid out before us, would we change anything? According to Statt, Story of Your Life — and by extension Arrival — is telling us to live as if the answer is, and always will be, a resolute no.

It’s a really deep and interesting philosophical question – one that most likely has been  explored ad nauseam by thinkers around the world and across the centuries.

One that is particularly relevant when life turns difficult, complex, and at times hard to manage.

What do you think?

Pádraig had a great day today – breakfast, walk in the park, a few episodes of the Mentalist, and a visitor.

Would I have taken other decisions in the past had I known years ago that this day would come, one day?

I am so often accused of gloominess and melancholy. And I think I’m probably the most cheerful man around. I don’t consider myself a pessimist at all. I think of a pessimist as someone who is waiting for it to rain. And I feel completely soaked to the skin. … I think those descriptions of me are quite inappropriate to the gravity of the predicament that faces us all. I’ve always been free from hope. It’s never been one of my great solaces. I feel that more and more we’re invited to make ourselves strong and cheerful. …. I think that it was Ben Jonson who said, I have studied all the theologies and all the philosophies, but cheerfulness keeps breaking through. (The Joking Troubadour of Gloom, The Daily Telegraph, 26 April 1993.)

Strong and cheerful when we’re soaked to the skin – sounds like a good description of how I hope to feel in the coming year…

The quote came up this morning when a group of journalists were remembering some of the famous people who died this past year. They spent quite a while talking about Leonard Cohen, the ups and downs in his life, his music, and the incredible humour in his songs. They didn’t quite refer to it as ‘cheerfulness’ though…

It’s hugely difficult to do this, but I’ve promised myself to try this out next year: to really focus on what needs to be done for Pádraig and persons with injuries like his. Sounds so simple, but it also means, if you turn it around, not to focus on things that don’t work, on people who are making my work difficult, on what often looks and feels like a pretty desperate situation. I am going to do this work cheerfully, with determination, persistently, transparently. I also know that I will have to be physically fit to do it.

I think this is how Pádraig would have done this. We both share a slight tendency to become impatient – something he managed to control really well. An example to follow.