Before you read this, remember it’s from 1967 – the language is really cool, not always PC, but never meant to be offensive. So, here it goes: You can get everything you want…

And walk out. You know, if one person, just one person does it they may think he’s really sick and they won’t take him. And if two people, two people do it, in harmony, they may think they’re both faggots and they won’t take either of them. And three people do it, three, can you imagine, three people walking in singin’ a bar of Alice’s Restaurant and walking out. They may think it’s an organization. And can you, can you imagine fifty people a day, I said fifty people a day walking in singin’ a bar of Alice’s Restaurant and walking out. And friends they may think it’s a movement.

I’m sure that I did mention the song Alice’s Restaurant before. It’s one of my favourite songs and it doesn’t make it onto the radio very often because it’s really long, like: really long. It’s by Woody Guthrie’s son Arlo. It’s also a film. An absolute classic, like Easy Rider, Once Upon a Time in the West, Harold and Maude, Into the Wild…

Arlo in his wisdom describes in the song word for word what is now happening.

Family by family “walk out” their sons (it is mostly sons) from nursing homes.

Family by family are reminding their elected representatives and their government that their children have a right not just to health care but a right to a life with dignity and respect.

Family after family are reclaiming their children’s right to health care and to their human rights.

It’s no longer just one person. It’s no longer something that can be put aside as something strange, unusual, “off”.

There are so many families now that we are really an “organisation” – and will soon be seen as a movement. Because that is what we are. An Saol is a movement that will change the lives of the injured, it will change the hearts and minds of health professionals, as well as that of society.

Join the movement. Do what you can to support us.

And: wish us luck with the climb up that “hill” in Co. Mayo tomorrow. And: wish Ruth a great birthday party tomorrow evening – she asked her friend to support the An Saol Project, rather than giving her presents.

All of a sudden, so many things are beginning to happen that I feel: Dizzy. So dizzy my head is spinning…

More families are bringing their sons home. More families are beginning to speak out. See the Irish Independent and the Irish Mirror.

We had contact with two other families ready to support An Saol. It looks like the Irish Times and, hopefully, RTÉ will be picking up on the enormous contribution the An Saol Project will make to claim the human rights of those who are offered end of life treatment when they have their lives ahead of them.

We will rock the boat.

There is a dynamic beginning to develop that will not stop until real change and justice is delivered to those who survived a severe brain injury.

Pádraig continues to get much better control of his body and is showing tremendous alertness. He is continuing to make such big efforts to get better, to regain as much control over his body, his mind, and his environment as possible. He, and others, need our support to succeed. And succeed they will. Together, we will overcome the current mind sets. Together we will change the hearts and minds of people who cannot look beyond the horizon – and will “never” get dizzy!

I will go and climb Croagh Patrick with a group of friends from Longford this coming Saturday. Let me know if you want a lift to basecamp and we meet up.

What a day.

I thought you should see this to believe it.

Even a couple of weeks ago, this would not have been possible.

In other news… Pádraig’s very own communication device arrived here today. It’s hard to believe but true thanks to the incredible work of his therapist. It will open up not just windows but double doors for him! We went out for a walk with two of his friends to South Beach – not in Miami, but sunny Bray which today looked at its best with all the clouds, the wind, and the showers. And in the evening, there were two meetings with a survivor of an ABI and his family, as well as with the brother and his partner of an ABI survivor. To me it looks like people are beginning to speak out. There is change in the air.

You better believe it!

It was a really interesting programme anchored by Gay Byrne: Last Orders. If you grew up in Ireland in the 60s and the 70s, it must have been a trip down memory lane. But even for me, one of the ‘original’ immigrants, the story of Ann Lovett who died beside a grotto in Granary giving birth and the death of her baby are events I remember. The documentary highlighted and explained so many aspects of Irish society and its close relationship with the catholic church which people need to remember or learn about in order to understand the Ireland of today.

The idea that central functions of the State are left with charities is one of these aspects of Irish really that doesn’t sound so strange anymore if you look at who was running the schools and hospitals during the formative stages of today’s Ireland.

There are many people who like Gay Byrne and many who don’t. No matter what you think about him, the few short clips from the original Late Late Show moderated by him served as a reminder that you can have a highly successful chat show that really discusses issues at the heart of society in quite an open and often controversial way – rather than celebrating book and film launches, and organising quizzes where you as the audience pay €1.50 per call/text to finance the €10k prize in the weekly ‘quizz’ where you have to know if these year’s Olympic Games take part in Berlin, Rio, or Mumbai.

Gay did a great programme, well worth watching. Well worth learning from.

I have been thinking so hard, I have been trying so much, and I failed so miserably. To bring the issue of acquired brain injury into the main stream media. This afternoon, on Ireland’s most listened to ‘drive time’ radio show, just after the 5pm news, Ireland’s largest voluntary organisation working with ABI survivors was put into the spot light and got all the attention of the most listened to, most serious prime time radio programme.

Not because the programme wanted to make known its good work, or wanted to bring into the public domain the scandal that is the neglect of young persons with severe acquired brain injury by the State, or to support the efforts of the Neurological Alliance Ireland to develop neuro rehab in the country.

The scandal was that the CEO of this organisation received not just her (very respectable) primary salary, but also another (more moderate) secondary salary for a second job administering the houses owned by this second organisation which are used by the main, primary organisation for its service delivery. By coincidence, she had started to receive the secondary salary when her primary salary had to be cut in line with general cuts introduced by the HSE about 6 years ago.

So this is how the media works. This is what constitutes a public scandal and sells news.

What if – what if we organised a big set-up of the media? Someone ‘leaking’ some governance issue so that we get this all important interview which we could use then to turn the tables and talk about the real scandal.

As a German I couldn’t but raise my eyes to the sky and sigh “Es ist zum Mäusemelken!” – which Google Translate very loosely translates as “it is to mice milking”.

If you think about it: there is the scandal of utter neglect of young persons with severe brain injury. There is no question about the fact. There is no question about the scandal.

But an existing scandal only becomes a public scandal when it touches and penetrates the public mind.

How can we make that happen?

We will cross the rubicon when families speak out and say it the way it is. Nothing more and nothing less. In public.

Only then will public outrage prevent professionals from pressing families to accept the ‘reality’ and ‘get on with it’. Only then will they stop putting families under pressure, driving them to tears.

It’s a public matter and we need to make it public. Res Publica Res Populi. Right?

I remember that summer in Dublin, and the Liffey as it stank like hell, and young people walking down Grafton Street, everyone looking so well…

What an iconic song! What an iconic swim. One of the most famous in the world. The only one going right through a capital city. Pádraig swam this some years ago. Today we walked along the river towards the Customs House, following the swimmers, negotiating our way around a true obstacle course. Dublin’s Quays are not made for wheelchairs.

It was a brilliant day, meeting ‘old’ swimming friends Pádraig had not met for more than three years. Man, life’s worth living but it’s also pretty tough at times. But that’s what it’s about. And the people that are with you all the time, be they fabulous or tough or sometimes both.

After the swim, Pádraig was off to a surprise party for one of his best friends who has decided to hand in his job and head of to Nepal. He’ll get rid of his phone, his laptop, and start writing post cards and letters again… I had to think of Into the Wild. One way tickets. Burning what you own and what is so precious: money, photographs, driving license, passport. Nothing left really to worry about, at least not any possessions. Free the mind to focus on what matters.

Sounds good to me, to be honest.

It was a German (!), an old friend from Hamburg (!), Klaus Voorman, who designed the Grammy-winning album cover (“album cover?”, I hear you ask? “What is that?”).

The music was (partially) inspired by the Beach Boys’ Pet Sounds – which had (partially) been inspired by Rubber Soul. Throw in a third album, Bob Dylan’s Blonde on Blonde, and his response, in 4th Time Around, to Lennon’s Norwegian Wood, and you have three of the best albums ever recorded, all being released in one year, and Revolver on this day, 50 years ago.

Pretty complicated, right? And no, I’m not a walking music encyclopaedia. It took me hours to put that puzzle together today. Really.

“Not the best use of your time, Reinhard, if you don’t mind me saying”, you might say. “Haven’t you got better things to do?” – and I wouldn’t entirely disagree with you.

Only that doing these un-productive, pretty useless, things from time to time really make our life worth living. If we were just concerned about being productive all the time we would become machines. What makes us human, what makes “life” life, and not just existence, is doing things, at times, that are un-productive.

In fact, I suspect that the sometimes exclusive focus on productivity and metrics and turnover, the “University of Enterprise”, is leading us into a world where life is only valued if it produces a return on investment.

What kind of life would that be?

One of Pádraig’s best hours in the week is that of his Music Therapy. One of my best hours was sitting in on a session. There were no measurable things happening, as far as I could tell. But there was real magic in the air and an engagement that was incredible. Worth living for.

Life is worth living. Even, or maybe especially, if the outcome is just the pleasure of living it.

Wouldn’t you agree?

(And being able to listen to 50-year old Rubber Soul, Pet Sounds, Revolver and Blonde on Blonde is one of those pleasures of life.)

I’ve been asking myself whether something utterly outrageous can be so desperately serious that it turns into utter fun. Could I tell the uncut version of hospi-tales in the laughter lounge and become such a run-away success that it would bring in the €1.5m An Saol requires for its 3-year neuro rehabilitation pilot project? Would this be a more efficient use of my time than trying to get politicians to listen and act?

There are stories I’ve been told, conversations I’ve had, phone calls I’ve received, situations I’ve lived through in the past years that you couldn’t make up if you wanted to. So off-scale and absurd that told out of context they could have people lying on the floor laughing their heads off.

Only that, of course, none of them are really funny. They are dead serious.

They are so dead serious that you wonder how there isn’t a huge outcry, headlines all over the papers, people ringing into their favourite radio stations, politicians calling for resignations and commissions of investigations, and investigative journalists doing what they do best.

They are so dead serious that it is inexplicable that they reflect ‘accepted’ every day practice in a civilised and prosperous society.

We really do need our heads examined.

PS: Pádraig once told me not to tell jokes. Ever. Not alone and, especially, not in his presence. Unless I wanted to really embarrass myself. Germans are just not funny, not in German, less in English. He was, no surprise here, right, of course. On the few occasions I’ve tried to tell jokes people kept looking at me in expectation of that punch line that had long been told. In this case, though, I wouldn’t try to tell jokes, I’d tell it how it is.

There were so many visitors here in the house today, it was impossible to keep track. Carers (PAs), a couple of therapists, two reps, a couple of Pádraig’s friends, a brilliant cooking teacher, and a few ‘regulars’.

I’ve been trying to write about important stuff here for the past few days, or is it weeks, and I just don’t manage to do so. Because by the time I sit down, it’s so late that I can’t really concentrate on anything anymore, can barely type and keep my eyes open. At times, my fingers jam on the keyboard and the keyboard freezes in which case I have to start all over again. It can take a long time to get a sentence together, twice that to get a sentence together that makes sense…

I won’t be able to write what I wanted to write about this tonight, but at least I will mention this:

Check it out here and join us on 13 August when we’ll climb Croagh Patrick. Start your fundraising campaign in support of the An Saol Project!

Finally, An Saol is not only looking for Physios and OTs, we are also looking for a “Programme Co-ordinator” who could help us develop the organisation – please get in touch if you know a suitable person (or persons).