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.

What a day! Going out for a walk with one of Pádraig’s friends in the morning was really nice. But going out for a swim with Pádraig this afternoon was just pure magic.

Good friends had arranged the pool where we used top class equipment to lift Pádraig into the really nice, warm water for about half an hour.

The champ was back in his element:) After more almost three years and a half. He really really so enjoyed this. Floating and relaxing, moving his legs, stretching his arms, moving from one end of the pool to the other almost weightless.

I went into the water with him to support an hold him. Three of his former swimming teachers and coaches were at the pool side calling out instructions, almost like the old days.

It was pure fun and delight.

Tonight, we will be able to see the most spectacular supermoon since 1948, appearing 14 per cent bigger and 30 per cent brighter than usual. It’s because the moon will be coming closer to Earth than it has done for 69 years.

Not 100% sure whether there is a connection but earlier in the day, before the superman was to appear, Pádraig’s good friends finished the sensory garden features.

Maybe just in case tonight’s clouds would cover the sky and hide away the supermoon they installed lights (which you can see on the picture) and added some soothing sounds of water splashing down on the stone (don’t think you can see that on the picture). There are a few finishing touches to be done but it looks like Pádraig’s new garden is nearing completion. It’s feeling, looking, and sounding pretty amazing.

We were preparing today for Pádraig’s first trip to a swimming pool after the accident tomorrow afternoon. It’ll be a really exciting day. One of those I thought would never come.

Oh, do go outside and have a look: nothing will match this superman until the moon makes a similar approach to Earth on 25 November 2034. (And yes, I did switch off the lights outside:)

PS: Try autocorrect on ‘supermoon’:)

I don’t know a country where Sunday papers are as important as they are in Ireland. There are loads of them. People buy not one but several. You switch on the radio and people seem to talk about nothing else. Which is how I heard about a story, then bought the paper, and thus learned about another development.

asds

The Chief Executive of Acquired Brain Injury Ireland (ABII) had been in the news a few months ago when an issue about an additional salary paid to her was reported on in the news. Today, it was reported that she had resigned from the Board of the Charities Regulator – the Government ‘watchdog’ introduced to oversee the charities sector following a number of scandals. The Mail on Sunday, in true form, added a handful of other details to the story. It’s a sad state of affair and, in many ways, quite upsetting what is going on.

Surprisingly, it seems that the Government will make funding for ABII dependent on its willingness to merge with two other (unnamed) charities active in the same space as ABII. I would love to know more about these plans.

Apart from the papers – we really only looked at one paper and one article – it was a very quite day. Some friends of Pádraig who had planned a visit cancelled because they became ill. I spent most of the day in bed hoping that it would be the last day that I was feeling so sick. Really can’t wait to get better.

I’m waiting but don’t want to can’t really have no patience and above all no time to wait or to waste all the scandals all the disasters of the world in far away places caused by nature, man, or elections the pressures of work I’m not even doing anymore programmes being restructured work being dismantled price of coffee being raised none of this is really touching me anymore all of these things have no impact whatsoever on my reality I mean what difference do all of these things really make and I mean really make none is the answer whether a therapist comes to help Pádraig depends on much simpler factors like how much money have we got and for how long will it last if we pay for all the therapy Pádraig needs or are we able to find the right therapists or will the traffic on the M50 delay people coming to the house when will the builders finish the snag list what kind of broadband should we get or what is the best way to get the TV channels Pádraig and us would enjoy which and where are the good places and occasions to bring Pádraig to how can his friends be best involved with him yes visiting but also doing how can we build and maintain a circle of friends for all of us how will be able to do the camino travel to Lourdes and to Alaska and to Pforzheim and spend the summer in Tating enjoy life as it is enjoy life make the best out of it when will we hear from the HSE why are politicians not in touch and is the project proposal included in the service plan questions hard to answer when a stupid flu makes me feel 30 years older feeling miserable useless fearful of spreading whatever first caused my voice to disappear then a headache and now waves of coughs that come out of nowhere and make it hard to breathe it’s getting better all the time but it’s hard to see on certain days hard to appreciate it hard to extract myself from daily routine though it is not really a routine and instead to look forward and in bigger terms this day is done tomorrow is another day if not better than at least new, fresh, full of promises.

A thousand years ago I lived at this Hotel in NYC. I was a frequent rider of the elevator on this Hotel. I will continuously leave my room and come back. I was an expert on the buttons of that elevator. One of the few technologies I really ever mastered. The door opened. I walked in. Put my finger right on the button. No hesitation. Great sense of mastery in those days. Late in the morning, early in the evening. I noticed a young woman in that elevator. She was riding it with as much delight as I was. Even though she commanded huge audiences, riding that elevator was the only thing she really knew how to do. My lung gathered my courage. I said to her “Are  you looking for someone?”  She said  “Yes, I’m looking for Kris Kristofferson  “I said  “Little Lady, you’re in luck, I am Kris Kristofferson.”  Those were generous times. Even though she knew that I was someone shorter than Kris Kristofferson, she never led on. Great generosity prevailed in those doom decades. Anyhow I wrote this song for Janis Joplin at the Chelsea Hotel.

Everyone has their own favourite song by this most magnificent poet turned ‘singer’, their favourite stories. The one about the Chelsea Hotel is my favourite story, as told by the man himself at a 1988 New York concert, an ‘indiscretion’ he later regretted. (I made sure to stay in that hotel during my first visit to New York in the eighties, went up and down the elevator, but, unlike Leonard and Janis, was never ‘in luck’.:) My favourite song is Everybody Knows: “… that’s how it goes. Everybody knows the boat is leaking, everybody knows the captain lied.” – If you like the original version of the song you’ll find it here. And my other (maybe even more:) favourite is the Anthem, especially in times like these: The birds they sang at the break of day. Start again I heard them say. Don’t dwell on what has passed away or what is yet to be. Instead: Ring the bells that still can ring. Forget your perfect offering. There is a crack in everything. That’s how the light gets in.

Apart from the death of one of the Greatest, we heard of early this morning (although he had died last Monday), today will always be the day I’ll remember as the day, three years ago, that Pádraig and I left Beaumont Hospital really early in the morning, I think it was around 6am, to be brought by ambulance to Dublin Airport from were we went by air ambulance to Hamburg. I won’t, and tonight I don’t really feel like doing it, go back to that day, the care of the therapist in Beaumont who had come in at 5am to prepare Pádraig for the journey, the good wishes, blessings, holy water and really heartfelt friendship of the staff that morning.

But thinking of that day and of what followed, and having spent the afternoon with Pádraig today beside the fire while it was cold and rainy outside, I am beginning to feel grateful for the life we have together, as a family. Never thought that …

All men will be sailors until the sea will free them… in the meantime: keep ringing the bell that still can ring and watch that crack: that’s where the light gets in.

PS: Just commented that we all spent nights singing with Leonard, that we all know the lyrics of his songs like nobody else’s. The meaning of which we, or at least myself, never really grasped (I don’t think they were meant to be), but always thought were just magnificent.

The story continues. Today it emerged that Homer got it right (as always:) when he predicted ten years ago that Donald Trump would be President.

Or was it 16 years ago, as The Mirror says in its posting and a short video of the show?

A reality TV show, a cartoon, has morphed into reality.

I’m still coughing and sweating, trying to get over the headache and feel pretty useless, almost like being in the way.

One of Pádraig’s friends came over for a visit today and Pádraig used, for the first time, the new setup on his Tobii Dynavox – starting with ‘hello, how are you?’, not telling his friend what he wanted to drink or eat or wear, definitely not his, nor anybody’s favourite topics of a light conversation, but asking him what kind of music he was listening to, whether he had been to any concerts recently, or whether there were any new interesting clips on YouTube. He said ‘good-bye’ saying that he hoped to see him again soon.

That’s what I call ‘inclusion’. None of this would have been possible without the help and support of a professional therapist who’ve made it her mission to support Pádraig communicating with the people around him, to not just be the recipient of ‘messages’, but the sender, the initiator.

Being able to listen is good and necessary. But sometimes you have to be able to say things. And Pádraig will be getting to the point where those ‘things’ are going to be more substantial than about food or music or clothes. D’oh!

“Nurses can remove patients from beds ‘as trespassers’ using minimum force in order to free up acute beds for patients who need them.”

Sounds like a statement by President Elect Donal Trump’s new Secretary of Health.

Instead, it’s from a memo by the Irish Health Service Executive (withdrawn in the meantime) as reported today by RTÉ’s Health Correspondent Fergal Bowers.

There is a certain irony in what happened today: 27 years to the day after the world’s most famous wall came down in Berlin, a man was elected President of the USA who is best known for building a new one. 15 years after 9/11, the USA got an 11/9 to remember.

I think most of us will remember for a long time what we were doing this morning when we heard that Donald Trump got elected. I woke up with (almost) no voice, and stomach and head aches. I’m in bits, as they say. And it didn’t get better.

The ‘good old’ Pádraig was there really prominent today telling everybody who wanted to hear it this morning – and that was myself, his therapist, and his sister – that he really liked Trump, that it was great that he had won the elections, and that he would have voted for him had he been an American. The therapist decided Pádraig’s feet were too tired to press the switch properly – as therapists do when they think they are getting conflicting messages:) I think Pádraig was simply having a bit of a laugh, having everybody on, provoking us, questioning everything, especially the ‘obvious’, poking fun – as he confirmed when we asked him again in the evening (ppphhh!!!). It’s good to see he’s right here with us.

Nobody better than Trump to prove it!