Make sure that you won’t miss the launch of “Pádraig” tomorrow night, 8pm, at the Dublin Generator Hostel, Smithfield:

https://www.facebook.com/events/374935589377452

There was an interview with Cian Mac Cárthaigh of IMLÉ and Marcus Mac Conghail on Raidió na Life tonight at 8pm, on Fios Feasa presented by Siobhán Seoighe, with a performance of Pádraig, the song. I managed to record the interview ok, but messed up the first minute or so of recording of the song for some reason – which, I guess, makes it a collectors item!

Pat interpreted for me, so I was able to follow, more or less, what was said. There were two things that stood out for me: one was that this is a song, an anthem, to all people with a good heart; the other was that Pádraig has friends that are legend.

The interview: 

The song: 

This is summer. Holidays. Early morning runs. Long, warm, summer evenings in the back garden with family and friends.

Next year.

This year, I’m becoming an expert in ceiling lifts, hoisting systems, stair platform lifts, all sorts of bath tubs and other gadgets. Today, I found out that there is a “Verein” in Hamburg that has not just experts on communication, bathroom solutions, mobility, a barrier free construction, they also have a 200m2 show room where they show and demonstrate solutions from different manufacturers.

Of course, the “Verein” is financed by the Freie-und Hansestadt Hamburg and its services are free. We’ll go there tomorrow morning to get some ideas on how to make life for Pádraig a bit better.

There’s a “Verein” for everything in Germany. I should have know!

Pádraig is doing well. We’re trying to get the three meals a day going. Today was the first day with the changed schedule. T’wasn’t perfect (yet:) but a good try. It’ll be better tomorrow.

Today’s German Music Tip
BVB (100,000 Freunde, ein Verein) – It’s a different kind of “Verein”, but – in Germany, there one for everybody in the audience… and Pádraig really likes BVB!
What’s hot
BVB
What’s cold
The wind high up on a roof terrace, even on a hot day.
The German word/phrase/verse of the day
Dat kannse dia vonne Backe putzen.

PS: Just found this on Raidió na Life’s website

There is no doubt that Pádraig is moving a little bit more every day. And that he is eating better and more every day. Being more himself.

Today, as on most days, his aunt rang to talk to him. Routine. Except that, today, he was holding his arm up (no support underneath) and he was holding the mobile (or ‘cell’ as our american friends would call it), he was holding the mobile in his left hand, holding it close to his ear.

We changed our arrangement with the carer slightly because were are going to introduce three meals a day for which he will need time. We will also go out more often and more regularly. It’s summer, after all!

And we’ll be getting more mobile by the day!!!

Today’s German Music Tip
Helene Fischer, Atemlos. This has been the song in Germany over the past year or two, and I never ever thought I would recommend it to anyone. But his version is like a lesson in German culture: Helene sings her summer hit at the celebrations of the German soccer team, the new world champions, at the Brandenburg Gate last summer. It’s iconic in a special sense.
What’s hot
Phone home
What’s cold
Helene Fischer
The German word/phrase/verse of the day
Tortenarsch, Bratbär, Pflaumenaugust, Muffkopp, Kappskopp, und Dreckschüppengesicht – all words you should remember when you want to really insult somebody.

Today was s fabulous day outside. A bit windy, maybe, but a great blue sky with sunshine and temperatures that were just right. So we went out for a long walk. Two, maybe three hours. I showed Pádraig and Pat the route where I go ‘running’. Pat didn’t want to walk back the way we came, which is what I always do, so we walked up a side street and discovered – that Tonndorf actually has a beach and an open air swimming pool in a natural lake! Tonndorfer Strand!

Zigarettenautomat – ad for and sale of cigarettes from machines on Tonndorfer Strand!

It was a great walk and Pádraig really enjoyed it, I think. On a day like this, why would you stay in the house when it is so beautiful outside? Maybe the only downside to all of this was that we were not the only people thinking that way, of course, so there were just a tiny bit too many cyclists, walkers, runners, and dogs around. But having people around is great and makes you feel alive!

Last night, I watched the last half an hour of Bladerunner, the movie Philip refers to about a dozen times in his book, It’s not dark yet, as one of his favourite films of all times. It’s a science fiction movie, now several decades old, and still a masterpiece. Turns out that the last sentence of the movie (in the final cut) is key: “It’s a shame she won’t live – but then again, who does?” says a voice referring to a female robot and now his friend, as Deckard discovers a paper unicorn and the crushing realisation that he, too, is a replicant (but has been programmed to believe he is human). Deckard is the Bladerunner, charged with killing (or ‘decommissioning’) human robots, slaves, that are running out of control.

There must be some deep meaning. Robots looking like humans. ‘Humans’ not realising they are robots and have a limited lifespan.

The one thing that distinguish robots from humans is that humans have emotions. They could love. They can be Dreamboaters. Robots, slaves just following orders, can not be Dreamboaters. Ever.

Today’s German Music Tip
Walter Mossmann, Sieben Fragen eines Schülers.
Good idea to check out the lyrics. Neither Walter Mossmann nor this song would be ‘cool’ these days. He was one of the German singer song-writers who had convictions, a sense of justice, and a believe that artists had a role in changing society (for the better). He died on 29 May, on Pádraig’s birthday, 73 years old. Loads of his songs are on youtube and other online sources. They are not just works or art and testimony to a certain time in Germany’s history, they make you think. Think that there’s no need for a sell out. That economy is different from society. That people always come first.
What’s hot
Protest
What’s cold
The water on Tonndorfer Strand
The German word/phrase/verse of the day
Zichten

Some years ago, I was driving for the hospice in Raheny as a volunteer. Once a week, I picked up someone from home, brought them to the hospice, and brought them back home later n the afternoon. I will never forget my first impression of the hospice: it was one, if not the most beautiful places I had seen in my lift. Then, I wondered why one had to die in order to be looked after so well.

Today, I saw someone asking that question again: Why do you have to be dying to be looked after that well?

If you think about it: the hospice movement is doing exactly the opposite of what the medical profession would argue for: they are spending all their money and all their energy on people who very likely will die soon. They do that in the best way they can and what they can do is really impressive.

I think: you can be looked after that well, even when you are not dying, when people care.

Today, Pádraig is doing all the things many ‘professionals’ believed he would never be able for: he just finished a bowl of soup, he is breathing by himself, the only tube going into him is the PEG for liquids and food, he goes out into parks, supermarkets, cafés – and 28-hour train journeys. Just 5 months ago, doctors wouldn’t even let him go out for a walk in the hospital yard with us.

He can do all those things he couldn’t do just a few months ago because people care.

When people care, things can be done, even when you’re not about to die.

Pádraig’s physio tried out the therapy table with Pádraig today. There is a bit of setting up time required but once the transfer was done he really enjoyed it. There is so much more space on that table than in the bed and, in addition, it’s a bit harder, providing more support and body feeling. One nice aspect of this was that his therapist was focusing completely on what he was doing and not on the time at all.

Guess what this is: a hotel for insects! Only in Germany…

Later on in the morning, Pádraig, apparently, had encouraged his carer to read him out of an English book a friend had sent him but then changed his mind and ‘told’ him to read out of a German book for him. They both were delighted: the carer because he did something Pádraig had asked him to do (using his tongue), and Pádraig because the carer had entertained him a bit.

It made me think that we should try and play audio books for Pádraig. And, as it happens, one of his four friends visiting him yesterday and today had brought an audio book for him! So, we’ll try out how he’ll like that. They had also brought a brand new guidebook for Pádraig: a guide book to Alaska! No question, we’ll have to go there now!! And before the guidebook gets dated!

The full moon over Hamburg

…and our back garden in Dublin.

Today was the hottest day of the year: 30oC. It was the first time we could really take advantage of the terrace and sit outside in the sun. We also went for a long walk to the park with Pádraig’s friends taking care of him and the wheelchair which was really nice!

These were great days, yesterday and today, for Pádraig: being with his friends, listening to the chat, being with them.

There’s a full moon rising. The same that lit up the sky in Dublin earlier this week on an amazingly clear sky over our back garden – waiting to be transformed for Pádraig.

Twitter is brimming with the news of the launch of the song “Pádraig” in Dublin’s Generator on Thursday, 11 June. Be there and be assured of a phantastic night of music.

Pádraig had a great day today. Four of his friends from Dublin are over and we had a great afternoon sitting on the balcony in glorious sunshine. It was the first time that the weather was good enough to have “Kaffee und Kuchen” and a barbecue outside. You could see the smile on Pádraig’s face when his friends arrived and started to share their news from Dublin.

Tonight and over the coming weeks, however, my thoughts and prayers are and will be with a young person who we met in a hospital some time ago, with their family. Things have taken an unexpected turn and are not looking good.

So today work was supposed to start on Pádraig’s new room, but that got delayed for another 2-3 weeks. Instead, I met up with the people who have been helping us to put plans together and who will complete the extension. Two hours passed by in no time. And we still need to clarify loads of details – some bigger than others. The reality is that I can’t wait for these rooms to get ready, at least to start with the conversion.  It’ll be so nice for Pádraig to come back and, who knows, it might just give him a boost.

Tonight, after two long drives (Limerick) and loads of meetings, no boost will manage to keep my eyes open.

Trying to catch up. Always behind. Never on top. i close my eye. I hear noises. I hear voices. I feel that I am somewhere but am not. That I should be doing something. That the space where I am is not where I am.

Dublin is his city. This is his home.

Having read Philip’s book and seen that Bladerunner is one of his favourite films I watched parts of it again. The replicants live 4 years and are afraid of dying. So they are trying out everything they can to prolong their lives. I don’t remember how the film ends.

We wonder whether Pádraig might have a cold. How can you tell? How can he? Tell.

Pádraig is now also getting OT a few hours a week. The therapist has lots of experience and already seems to have established the beginnings of a connection with Pádraig. She is amazed that Pádraig never had the kind of therapy she is offering him. So are we. And so, I am sure, is Pádraig!

Full day tomorrow. Working my way down a long list.

We are on the Dreamboat and Dreamboaters do not give up.

Today was the big day of the Women’s Mini Marathon in Dublin. When I arrived at around mid-day in Dublin (not for the mini-marathon;) I thought I might have got off at the wrong stop. It felt and looked like Reykjavík on Christmas Eve: dark, wet, cold and windy. But, there were two brave women, old friends, i.e. friends from way back, of Pádraig who braved the elements and ran the mini-marathon for Paddy, as they know him.

Look at the pictures: they look (just a little) exhausted, but absolutely happy.

Before…

.. and after: in great spirits.

And here is what they said when they finished their challenge:

We would certainly not give up. Paddy is an inspiration to both of us…. We were completely humbled by your care for Paddy and your conviction that he will get well. We are on the dreamboat and deamboaters do not give up. We hope to make another trip to Hamburg. No date set as yet but will check will you before we book. Patricia/Mary(dreamboaters)

Pádraig was tired today, probably still recovering from this Wahnsinns-Pilgrimage to Lourdes. But he is in good form. That we will be going again doesn’t seem to be a question anymore.

A friend sent a book by Simon Fitzmaurice, It’s not yet dark, in which he shares what it is like when someone tells you that you will have just another three to four years to live. When motor neurone disease (mnd) slowly shuts your body down.

I read the book today when traveling from Hamburg to Dublin and could not put it aside. There is one section where he quotes two eminent and well-know consultants he had approached for help and advice when he eventually could breathe only with the help of a ventilator. One, he names him in the book, told him that he had to switch off the ventilator. The other, he names her in the book too, said that they do not advocate ventilation in this country for mnd patients. That it was time for Simon to make the hard choice. (One of them is the same senior consultant who told us and the nation on RTÉ’s Late Debate that people with severe brain injury offer a bad ‘return on investment’.)

I had to read this passage a few times to make sure I had understood it correctly. To my horror, I had: Both consultants advised Simon that he should not use a ventilator but get ready to die. In Ireland, mnd patients are not routinely ventilated – it’s too expensive. Instead, they are sedated, counselled, eased into death. They are not given a choice, Simon writes. Why would you want to live with mnd? In the same way: why would you waste money to help people with severe acquired brain injuries, to slightly rephrase what a senior consultant said about treating Pádraig and other persons like him? Why would you give them proper care, preventing dropped feet, preventing their shoulders being dislocated, preventing bed sores, preventing muscle spasticity, ….?

In the same way that the broadcaster standing in for Joe Duffy the day after my interview with Joe, asked Brendan Flynn whether he thought that his son Robert, who suffered very severe brain injury some years ago, had a life worth living because he had been reduced to a person that was completely dependent on others. Whether he was happy that Robert had survived, whether he was happy to have Robert around. I had to re-wind, listen again to that part of the programme, to make sure I had not misunderstood.

Simon’s answer in his book to all these questions is the same as the one given by ‘mostly dead’ Wesley in The Princess Bride, when replying to Miracle Max’s question: ‘ What’s so important? What you got here that’s worth living?’ – ‘Truuue love’ is his response.

Simon outlived the predicted three to four years, he lived with his ventilator to father two twins, he saw them being born, becoming toddlers.

My response to this ‘return on investment’ in medicine talk, to this inability to grasp even a hint of the meaning of life, to the cold accountant’s mentality in medicine – would be a loud “Ahoi” to wake up the broadcaster, to wake up the politicians, to wake up the consultants, to wake up the people so that they’d see the insanity and so that they joined in singing the ‘Dreamboat’.

Dreamboaters, ahoi!