It was one of those days, one of those moments I’ll never forget. One of those incidents I won’t want to talk about. One of those that really struck right into my heart. Yet it passed as the most normal thing in the world, no attention given, by anyone, it just came and went. And made, and makes, me cry, hurt so much, beyond comprehension.

A friend of Pádraig’s had left the new CD by IMLÉ, which they had launched recently. It’s really absolute brilliant music. I played the CD for one of Pádraig’s carers this morning. When “Pádraig” came up, the song Marcus had written for Pádraig, I got my laptop, went to YouTube and showed the video and song to the carer.

At the beginning of the video is this picture of Pádraig. When the carer saw the picture he asked: “Who is that”?

Would you believe it? It’s exactly one month to Christmas today, and just a few days to the first Sunday of Advent. And by accident, not by design, Christmas arrived early today for Pádraig when our HSE community therapist and the company the HSE had contracted delivered his new Comfort Chair!

Watching Pádraig enjoying his new chair, I was thinking that it might be used even if he isn’t in it. It really is so cosy, a bit bulky, a bit wheelchair-like looking, but you can’t have everything, all the time:) It’s just brilliant. Looking at the ‘bigger’ picture, I thought that Pádraig’s room is getting a bit small for all the equipment he is using… It would make so much sense to have facilities where he could get together with others using similar equipment, sharing it with them, getting a bit of banter going, enjoying each other’s company.

Just another reason to get the An Saol project on the road!

So you think you know what a ‘deadline’ is? So did I. But I double-checked today when I saw this van.

Historically, it is “a line drawn around a prison beyond which prisoners were liable to be shot”. Hhhmmmm. Today, most of us would understand it as “a date or time before which something must be done” though. But what on earth is a “Deadline Courier”? Historically. Today. To me this is some marketeer’s mind gone bananas.

Deadlines are not inspiring. They have a feel of “time running out”, or “the end is near”. They also have a connotation of finality. It’s similar to something expiring. Once a deadline has passed, there’s no going back. Systems like deadlines because they put people under pressure to deliver. Or at least they create the illusion.

In my mind, deadlines are like plans. They always make me think of the old jewish joke about God laughing when he sees man making plans. And anyway, if something is important, it’s worth waiting for or working towards it – always with as much dedication as possible, but not pressurised, not threatened.

Yet systems put deadlines even on sick people. Like three months in the National Rehabilitation Hospital and you’re out. You’re expired and categorised as a no-hoper if you’re not recovering after one of those enforced, completely farcical deadlines.

Pádraig and I went to St Patrick’s College (now part of the ‘University of Enterprise’, aka Dublin City University) and joined one of their weekly lunch time concerts. It was such a pleasure to listen to these young really talented musicians, all 45 of them, playing trad and contemporary music for just about 45 minutes. It was a real treat. The walk through the park crossing the little river and passing young kids playing in the play ground. Getting into the College. Sitting amongst young, bright, beautiful, enthusiastic students. Seeing and hearing them perform their own versions of great pieces of music. Sitting down beside the river on the way back. Talking with Pádraig, Wondering what the sea gulls were doing in the middle of the city, miles away from the coast. No pressure, nothing to do, no deadline.

PS: A former student sent me a link to a very funny video. It’s a skit on Apple (or on the people buying Apple products?). It’s in Spanish with English subtitles. The curious thing is that the subtitles have nothing got to do with the original words, just with the ‘action’. I thought it was getting better as I was watching it, it took me some time to get into the whole thing. At the end I was just laughing… and there is nothing better you could do than having a good auld laugh. Right?

Life can be fun. Especially when you do something a bit extraordinary, adventurous. Should we go down this way? Of course! C’mon, let’s go, let’s try it!

When you’re out and about with a wheelchair, you encounter all sorts of new challenges. At times, they are even sign-posted as you can see above on the picture from Pádraig’s walk today in the Botanic Gardens!

Imagine a sign warning: “Caution – pot holes in footpath” or “This footpath partially blocked on Thursdays (bin day)”!

Sometimes we need signs to warn us, to get our attention, to tell us what we should be doing. Right? – Well, if that is the case, then…

We should have signs all over our cities and towns saying: “Life is worth living – leave no one behind!” – “Dreamboaters – full steam ahead against the current” – “The end? – Ha! Watch me!”

Which sign would you like to see?

Just back from a great concert by one of the world’s greatest poets and musicians. We went because one of our daughters had given us tickets and because we wanted to hear America, The Boxer, Sounds of Silence, Bridge over Troubled Water. Paul Simon played all of them. He gave four ‘encores’ and was in great form, with a great band.

Although I had listened to the song loads of times on the radio, tonight I got the words for a first time. It’s a song from his latest album and it’s about access and inclusion:

Wristband, my man, you’ve got to have a wristband
If you don’t have a wristband, my man, you don’t get through the door
Wristband, my man, you’ve got to have a wristband
And if you don’t have a wristband, my man, you don’t get through the door

I can explain it, I don’t know why my heart beats like a fist
When I meet some dude with an attitude saying “hey, you can’t do that, or this”
And the man was large, a well-dressed six-foot-eight
And he’s acting like Saint Peter standing guard at the pearly…

When I was thinking about it I realised that much of the world is about wristbands. About allowing people ‘through the door’ and a well-dressed six-foot-eight man standing guard at the pearly…

In Paul Simon’s song, the riots started slowly with the homeless and the lowly,
then they spread into the heartland towns that never get a wristband. Survivors of a severe acquired brain injury never got a wristband in this country.

They will. Whatever it takes. We will not tolerate the status quo. Under no circumstances.

They said the wind was up to 110 km/h. The rain drops were more like small blades cutting into your face. Of course, the Germans were well prepared. The bridge over to the Arche Noah Restaurant was packed with people testing their outdoor gear originally made for Mount Everest expeditions. I’m sure that to them we looked like bloody tourists completely unprepared for the elements:)

The walk across the bridge was brilliant. The wind literally blew the blues aways and cleared the head. Going back tomorrow. Can’t wait to see Pádraig again. He has an appointment in  a special assisted technology clinic for tomorrow morning I’ll be missing – hope it’ll be the first of several. Should also hear from the HSE and hopefully from the Department of Health about the An Saol Project application.

Just found another example of how unconnected I am:) Palmen aus Plastik (in Hamburg und Berlin) von Bonez Mc & Raf Camora. Worlds apart from Dylan, Young, Morrison, Simon or Joni Mitchell.

Sitting in the living room in Tating, getting ready for the day, going through the papers (ironically the Hamburger Abendblatt’s headline is about overcrowded emergency departments in the city’s hospitals – though it’s all relative if you read the details:), and listening to my favourite radio station, Deutschlandfunk.

It’s Ulrich Wickert (73), Mr “Tagesthemen” (one of Germany’s most watched news programmes).

Here is someone who went to school in France just after the war, studied in the USA and took part in the freedom riders in the early 60, before exposing the ex-Nazis being in charge (again) of a good part of post-war Germany while studying in Bonn.

I’m sitting here, I stopped reading the papers with tears in my eyes. And I can’t stop. Ok, I’m quite a bit (!) younger than Wickert, but what he is recounting, the music he is playing, is my pretty close to my life.

For reasons I’ve tried to understand but always failed to, I’d never find my past in Ireland although I’ve spent most of my time here.

Rock around the Clock (Bill Hailey), Beethoven piano concerto no. 5, We shall overcome (Joan Baez), Spiel nicht mit den Schmuddelkindern (Franz Josef Degenhardt), Mercedes-Benz (Janis Joplin), Perfect Lives/The Park (Robert Ashley), Country Roads (John Denver), Le temps des crises (Charles Tenet) – for always connected to the popular uprising of the Commune de Paris 1870/71. (My favourite de Tenet is La Mer. If your French is like mine, you can check out the lyrics here🙂

I love this, it’s memories, kind of a happy past – but there’s less and less people to share them with.

Here’s Pádraig’s sister coming in while Janis is singing and asks me to change that awful music. “Come on”, I’m saying. This is an absolute classic!. “It’s awful!”. – Shouldn’t have been a surprise to me. Have you ever tried to share your memories of more than a couple of decades ago with someone young? It just gives away your age.

What is that thing about the past that makes me cry?

It’s just 11am and we agree to go out at noon: to Husum, have a look at shops, go for a swim (it’s a brilliant 50m pool with a large, heated outside area), have something to eat, watch a movie in a small but really nice cinema with arm chairs and tables. “This is real luxury”, I said. “The way Saturdays should be”, she said. How can they be?

10 hours later and I am finishing today’s blog. We took it even easier than planned in the morning. No swim. No cinema. But a really nice dinner on a boat in Husum Harbour and two films back in the house who couldn’t be more different: One of the all time classics, The Graduate, and the modern, outrageous Special Correspondents.

In between phone calls home to see how things are going. I had woken up last night in a panic thinking that I needed to get up to turn Pádraig. There isn’t really any ‘getting away from it all’ and the thing is, I don’t really want to. I’m not even sure if I want to to reminisce about the ‘good’ old times. If you’re young you don’t do that, I never did, I couldn’t wait, ever, for the next exciting turn of life.

So the next exciting turn will be An Saol getting of the ground to get a life for those with a severe acquired brain injury so that they won’t have to be ‘maintained’ in nursing home but are integrated in life the way everyone else is. And we will be all back here in Tating to enjoy the summer, the wind and the sea.

The best ever ever ever recorded concert was The Last Waltz. And the best song of the best concert was I shall be released. Watch it1 Listen! And shout it out: Any day now!

On the way to Hamburg. With Ryanair. To sort out a few things in Hamburg and in Tating. Just a long weekend with one of Pádraig’s sisters. We’re sitting in row 5 ( doing your online checkin at the last minute moves you up to the front of an almost fully booked plane with dozens of Reeperbahn fans and stags in the back:).

I’ve been coughing for the first hour on the plane because we had to run to the gate in Dublin airport (if you know me you’re aware that I’m not a sprinter) when we the notice board on which we wanted to check the gate number showed our flight as being ‘closed’.

By the time we got to our seats I could hardly breathe. I’m still having this taste of blood in my mouth you get when you’re really pushing yourself. – We were discussing which hostel we would have staid in for the weekend had we really lost the flight, and who we could have asked to photoshop us into a couple of pictures of the wild North Sea.

This is supposed to be fun. Can’t wait for tomorrow.

Another Germain song: Ich will leben bis zum letzten Atemzug. Ich bin keine Maschine. Ich leb’ von Luft und Phantasie.

As Bernie Sanders and his supporters are thinking aloud about a ‘Tea Party of the Left‘, I googled why the Tea Party is called Tea Party. I didn’t have a clue. – Well, there seem to be two reasons: first, it’s a reference to the American colonists who dumped tea into Boston Harbour as a protest against taxes introduced by King George; second, it’s an acronym for Taxed Enough Already. – That explains the “Tea” part of the name. Still not sure about the second part of the name, the ‘party’ bit. I’d call the whole thing a “Schnappsidee” – hard to find an English-language equivalent – but there you are. I wonder if they have heard of the Pirate Party? Could that be the left equivalent of the Tea Party?

It’s all about polarisation these days, looks as if this was a good thing. Which side are you on? Make up your mind. And you can’t sit on the fence, because you’ll be shot at from both sides:)

Pádraig is doing really remarkably well. Getting much better with holding and controlling his head, standing up, eating, drinking, being present. Again, nothing dramatic, but visibly better with little surprises every day. It’s way away from what we all had hoped for but – had anyone told me not so long ago that Pádraig would be ‘with us’ the way he is now, I’m not sure whether I would have believed them (although I would always had hoped for it, and much more). I have the feeling we need to get though the winter and next spring we’ll be in a very different space.

The (former?) president of the Olympic Council of Ireland, Pat Hickey, will be allowed to return to Ireland from Brazil where he has been under house arrest on a 400k euro bail for health reasons. Match that with the news of 520+ patients on trolleys in Ireland and you wonder whether Pat Hickey is taking the right decision. Could the health system in Brazil really be that much worse?

I was introduced to a new German song called “Chöre” just a few days ago. It’s all about taking life less seriously, about being more chilled, about being comfortable with yourself. A line from the song that stuck with me was about stopping to defend yourself. It’s the best idea I’ve heard in a long time. Because defending, or justifying what you’re doing has, in most cases, the exclusive effect with other people to do exactly the same: defending themselves. And before you know it you’re in a terrible, stressful and, above all, unnecessary row.

So here’s what I am thinking: unless you are a politician and are out for a sharp profile you’re much better off just being yourself, controlling the temptation to convince others that you are right, and justifying who you are and what you do – no need for all that, it just makes life more miserable. Instead, be a Dreamboater and listen to the music:)

Chöre.

One day, in secondary school, in our German class, we practiced writing summaries of stories we had read. These summaries had to be short, yet they had to capture the essence of the stories. Our teacher praised of my fellow-students’ summary and said he himself couldn’t have done it better. When I, with respect, said that I wrote a shorter and more to the point summary, he was first slightly offended but then conceded when I read out loud what I had written that this was truly excellent.

What I had done was to cut out the ‘noise’ and focus on what was at the core of the story.

Sadly, for me, it was a once-off. I never again did as well as I did that day in my German class.