It’s a lonely place for Ireland to be in. Also quite an embarrassing place to be in. While we are, according to our Taoiseach (or Prime Minister) a great little country to do business in – we don’t even want the taxes, with interest, corporations based here have been told by the EU to pay to our Revenue – but, we are not so great when it comes to disability rights.

This coming Thursday, there will be a demonstration at Leinster House, in front of the Dail, the Irish Parliament, from 13:00 to 13:40, to highlight the fact that Ireland has not yet ratified the UN Convention on the Rights of Persons with Disabilities – making it the only country in the EU not to have done so. And despite the Government having promised to do so before the end of the year. The Government are with Johnny Logan, one of Ireland’s greatest sons, singing, as he did at the Eurovision in The Hague in 1980: What’s another year!

Though the lyrics make it more a song we would sing, stoically (and a bit sadly) – never listened to the lyrics as I did today.

I’ve been waiting such a long time, reaching out for you – but you’re not near. What’s another year? – What’s another year for someone who’s lost everything that he owns? What’s another year for someone who’s getting used to being alone? I’ve been praying such a long time, it’s the only way to hide the fear. What’s another year?

So, what’s another year? – It’s another year of a broken promise, a commitment not met. Because other things were more important. Listening to the radio these days makes me angry. There is one storm after the other in this big tea cup. They’re all pretty inconsequential, in my mind  – while actions that really do make a difference are rare and, when they happen, often not reported by our headline seeking media because they don’t “sell”. And then we wonder why people are dis-engaging, watch reality TV shows, and forget how to think and analyse independently, voting for crazy things and crazier people.

There was a brilliant moment today, too. One of Pádraig’s carers had brought him chocolate from their holidays and as he put a piece into his mouth that was about to fall he made sure with his index finger to catch it and put it were it should go. Pure enjoyment. And a first – proofs that you can do anything, as long as there is an important purpose.

On some days, I just write because it’s so obvious what I need to write about that I don’t even have to think. On those days, something has happened that I just need to get rid off by typing it into this laptop that shares it with whoever wants to read it as soon as I hit the publish button. I don’t even think about who might be interested in reading this stuff because for me, it’s like an act of liberation.

Today is different.

There is the first of Advent. Being a German at heart, I went into Lidl and bought my four candles.

For the first time, each candle was of a different length – well, it’s because the one we lit today will burn over four weeks, the one we’ll light next Sunday over just 3 weeks and so on… What first looked like a mistake, makes perfect German sense! I also baked a cake, one my mother always did. All in an attempt to create a bit of this German Advent atmosphere in the middle of Drumcondra. While I was doing all this, two friends of Pádraig’s called in for a visit, and so did a neighbour bringing in an apple tart made with her neighbour’s apples. Pádraig enjoyed the banter, was really interested in some quirky news  – apparently Tom Cruise, an accomplished member of the Church of Scientology, can now fly but won’t do it -, and loved the whole atmosphere of anticipation of things to come. And things will come!

Then there is the really very funny story of someone getting my name (slightly) wrong and putting together an even funnier picture.

A German ‘Braveheart’ dressed up as a Scot fighting in Ireland… Could it get any better? On a more serious side: the HSE are finalising their service plan for 2017 these days. I just hope for their own sake that they included the An Saol Project. Because if they didn’t Braveheart’s fight for Scotland’s freedom was a piece of (Apple-) cake compared to the storm that will come over them.

Today, the discussion about whether Fidel Castro was or was not one of the giants of international politics, someone who took away Cuba from the US Mafia and gambling bosses and gave it back to its people – or a ruthless dictator killing hundreds of his fellow citizens.

What is true, no matter in which way you look at it: there are no homeless people and there are not people on hospital trolleys waiting to be treated in Cuba. And I don’t think they would just abandon survivors of severe Acquired Brain Injuries, rather than helping all they could to all survivors to have a life, travel on the Dreamboat.

No carers since yesterday at lunch time until Monday morning. ‘My better half’ had a small procedure, was in hospital yesterday and is resting today. So I spent the days with Pádraig. It’s a privilege. No interruptions. Nothing to be explained to anybody. Time is ours, it’s on our side. A visit called in, one of Pádraig’s friends I’d first met in Cape Cod Hospital.

It’s been a demanding day or two and I’m tired, but in a good way.

Tomorrow will be the first Sunday of Advent – we’ll be looking forward to the end of ‘darkness’, to the day that night will turn into day. Just four short weeks away. Wonderful.

 

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!