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!

The only graduation I had ever attended was Pat’s. And that was a long time ago. Germans didn’t do Graduations when I graduated in the 80s. “Unter den Talaren steckt der Muff von tausend Jahren” was the agreed view on ceremonies dominated by gown-wearing old men.

One of Pádraig’s sisters graduated in Germany, Pádraig himself missed out on his, so today’s graduation ceremony was the first one in a long time, the first one for us as a family. It was all very exciting. Later on in the day, we went for an early dinner with the extended family. The day was full of life and celebration. It was a very happy day in a very special way for all of us. A day that proved if proof was needed that life, Pádraig’s life and our life, goes on, with happy days like this!

Straight after Pádraig’s morning session, I drove West. To Limerick. It was great to talk to my colleagues and to hear how things were going. It was also sad and, in other time, it would have been really upsetting in a way. Not so today. Anyway, the primary reason to drive West today was to go to Askeaton and Coláiste Mhuire to meet students doing a transition year project with their fabulous teacher on  – guess what?

Acquired Brain Injury.

We talked about brain injury, Pádraig’s accident, the help he received in Germany, what the situation is in Ireland, and our decision to establish An Saol to change the disgrace that is the way persons with a severe acquired brain injury are treated here – in under-resourced nursing homes (in most cases and as a matter of course).

They are thinking big the way we all should. The older we get, the more complicated things seem to get – it’s an illusion you don’t fall for when you are – or remain – young.

Next March, there will be 4,000 people assembling for the world record for the largest number of people with a helmet ever, 4,000, in one place.

It was an absolutely brilliant, motivating, energising afternoon with beautiful people determined to make the world a better place.

When I was looking, over the weekend, for a way to walk the “way”, the Camino (just the last 100km:), with Pádraig I came across this project that two friends undertook: walking the whole of the Camino, all 800km, one by foot, the other in a wheelchair. I remembered that I had read about their story some months ago and looked it up again. They are now making a film about their journey and hope to release it next year. They are also writing a book that they plan publishing in 2017, as they announced on their Facebook site.

But above all, they thank their sponsors, one being a company in Vancouver that makes the wheelchairs they used. – It’s phenomenal. Really great. Wonder if there is a company in Europe making a chair like that?

So the plans are progressing. And there’s nothing like having a good plan, to make God smile!

Playback brought back a bit of anger this morning. (In case you don’t live in Ireland or you don’t know the programme: it’s an hour of the ‘best’ of the past week’s RTÉ Radio One programming.) During the week, an old lady rang Joe (Duffy) – probably the most popular phone-in radio show in the country.

She rang Joe because she is in a nursing home. A nice nursing home. The food is ok. The people are treating her ok. But, it’s not the place where she wants to be. She wants to be at home. And she was told that she can only leave the nursing home if her daughter signs her out. Something that the daughters is not doing. This lady appeared to be mentally fine and she reassured Joe that she was physically fine too. Now, how on God’s earth can a person be held in a nursing home against her will without the owners being brought to court for false imprisonment? I felt what the Spaniards call, very aptly, deep ‘rabia’, real anger. What kind of world are we living in?

Then the day got busy. In a really good way. No carers today. None of the ones Pádraig has do Saturdays, and only one of them does one hour on a Sunday. The upside of this is that the days are not structured by the carers’ timetable, but by what suits all of us: a lengthy breakfast, easy, nice long stretches, a lovely lunch, a visit with Pádraig’s grandaunt, calling in to a cousin’s (twice removed?) confirmation family party, a film back home during dinner.

In a way, life is literally hopeless. There is only one outcome. But there are good moments. Moments that make Pádraig smile. Like when he met his grandaunts today. Maybe he remembered one of them leading the whole family up the strip in Las Vegas many years ago. Really remarkable women! Early Dreamboaters!

Pádraig meeting his grandaunts today

There are days like this when everything falls into place like the flick of a switch. When it’s not always raining…

So here we go, heroes or ghosts. One man’s mood can break another man’s soul. Or am I just too cynical for my own good, too scared to say, we’ll get there if we should. And you know, you know, it’s harder than it looks. It’s harder than it looks, but I know it’s gonna take a lot of time and a little bit of luck.

And it’s beginning to happen, it’s beginning to move. I’ve seen a reaction, yeah I’ve watched us improve. And you could say we don’t care or that we don’t believe but this is what we’ve got and there’s nowhere we’d rather be.

I ‘borrowed’ that:)

Well, it’s a song I re-discovered when Pádraig’s music therapist was singing it for him and I managed, for the first time, to understand the lyrics. She asked Pádraig whether he was sad after she sang the song to him and he said “yes”. And she said “yes, it’s kind of a sad song, even the music is kinda sad”. I was ready to jump up and shout “no, no, no! This is *not* sad! Can’t you see: It’s beginning to happen! It’s beginning to move! I’ve seen a reaction, yeah I watched us improve!”

I could see that Pádraig looked a bit sad alright but didn’t think it was because the song was sad but I’d say because he must have remembered the happy times when he was singing the song at the top of his voice with the Coronas at a concert or a festival. So don’t grow old forgetting who you are, a simple goal could get you very far. (I borrowed that line too, from the same song:)

When I looked it up on YouTube it was curious to see that the Irish version had more than five times the number of hits than the English version. Maybe I should do (with Irish) what I did when I was learning English: singing songs in Irish, reading the lyrics, then learning the songs off by heard, and slowly understanding what they are all about…

Someone once told me that in Ireland, things come in three (like in the Trinity). So today, I’m adding music to travel and communication – three things to focus on for Pádraig. Music is a bit like a smell: it instantly catapults you (back) to places and times and people – and brings back memories, the good ones, the bad ones, the sad ones and the happy ones. But this is what we’ve got and there’s nowhere we’d rather be.

The point of all of this is, I think: never, ever trade your heroes for ghosts. (Even when you’re growing old:) – Makes sense?

We were walking along the bridge and up towards the statue of Mary in Dollymount when we spotted the flowers, in November, growing amongst the stones, shielding the footpath and narrow road from the sea. In the most unusual of places for a flower to grow. Where is shouldn’t grow. Totally unexpected. (If you look closely, there was also an empty bag of chips – where it shouldn’t have been:)

Just shows that when you open your eyes and look around, not just focused on what you want to see, the most marvellous and beautiful things can appear in places where you wouldn’t expect them at all.