I’m looking for the hook into the story: three old geezers, the three amigos, heading off to SanFran. On a bicycle. Would you believe it!? I’ve been thinking about contacting Paddy Powers to see what the odds are on all three of them arriving in Napa. On a bicycle. Who will bail out first? Whose backside will first be raw and bloody and so sore that he won’t be able to walk, never mind ride. On a bicycle. Two of them are granddads – one could well be, given his advanced age.

Who on earth do they think they are? They should be staying at home, cutting the grass or something. Why do they do this???

We had a chef in the house this afternoon, cooking for Pádraig. Cooking ahead. The food is now in the freezer and ready to be taken out whenever needed. Great!

More media interest in An Saol and in what families are having to say about the lack of care for sABI survivors. This is a time bomb for the government. They’d better get on their socks a start doing what’s the right thing to do!

Many people, including myself, have quoted Einstein because we believe he was really smart and really original. One of his famous quotes is his definition of insanity: doing the same thing over and over again and expecting different results.

When I think about my own life, I’m surprised by my level of ‘insanity’. Like trying to convince people who cannot be convinced – instead of working with people who are open to listen.

Surprisingly, Einstein wasn’t as original as I’d always thought. Cicero (remember Cicero?) said in Philippics: Any man is liable to err, only a fool persists in error. In other words, if you are failing to achieve the results you are looking for – don’t be a fool and keep trying because you’ll keep failing. Try doing something else or try to achieve what you want to achieve in a different way. Don’t keep doing the same thing expecting different results (which brings us back to Einstein:).

Government

• Do not keep producing reports
• Do not keep producing strategy papers
• Do not keep organising consultation groups
• Do not keep paying expensive consultants
• Do not publish draft implementation plans
• Do not make promises you know you won’t be able to keep

You have done all that. Try something else. Because if you keep doing the same thing expecting different results people will quote you Einstein’s definition of insanity or, if they have a ‘classic’ education rather than a scientific one, Cicero’s definition of a fool. You don’t want to be seen as either.

Pádraig had a visit today from three good friends he hadn’t seen for some time. They sat out in the garden on what must have been one of the best days of the year. His cousin from Australia who had been visiting over several weeks returned home – but promised him to return soon. It was another day when he stood firmly with both feet in life.

Today we received a letter from the HSE that a German Court Order in relation to guardianship is not enforceable in the Irish Courts according to their legal advisors, meaning that at least until the Assisted Decision-Making (Capacity) Act 2015 comes into force, an act signed by President Higgins in 2015, but not yet signed into law by the Government, the Victorian-era Lunacy Regulation (Ireland) Act 1871 and the Marriage of Lunatics Act 1811 are referred to by case law, leaving decision-making to the health professionals, and giving no rights, for example, to parents of adult children who cannot make informed decisions themselves – in absolute and complete contradiction to the UN Convention of the Rights of Persons with Disabilities (CRPD), also signed but not ratified by Ireland as the one and only EU country (even the EU itself have ratified it). I don’t share that view and would see, if that case ever arose, if that advice was correct – because to me, it doesn’t make any sense whatsoever.

Participation in society happens in public. Which is what makes a republic. But public doesn’t exist per se, it has to be created. Because public can be blind, public can be deaf.

Pictures can create public. Like the one below, perhaps Robert Capa’s most famous photograph, that of a Republican volunteer being killed in the Spanish Civil War in 1936.

80 years on, it is still photographs that create public and capture our imagination.

We are creating public for those with severe acquired brain injury by talking to our families, friends, and neighbours about what we are doing to build a sustainable system of neuro rehabilitation and quality of life. – One day, “our” photograph will capture what our work is all about….

Listened to another song on ‘hair’ today: Almost Cut My Hair by Crosby, Stills, Nash and Young, bringing Aquarian Age ideals into a new era. Apparently, the song tells us how to steer clear of trouble without selling out. I’ll make it my anthem!

Pádraig had a real eventful morning with a specialist from the CRC ‘suggesting’ how he should move forward in terms of communications. All arranged by one of Pádraig’s HSE therapists. What a brilliant move! The conversation was such an eye-opener. Things that when I heard  them were so obvious that I couldn’t understand why I hadn’t thought about them myself before! There is a perspective here of working with Pádraig for months to come. Wonder-ful.

I like Sundays. There’s always a nice breakfast. Pádraig can take it easy in the morning. He has a shower and relaxed breakfast. Today he went out to Donabate to the beach while I struggled ‘running’ my 20k (as per my ‘plan’) along the coast towards Howth, not quite sure whether I was getting ready for the Dublin Marathon or the An Saol Fundraising Cycle from Hollywood to Napa in October.

Whatever I was trying to get ready for it became pretty clear that I do have a long way to go to get ready for any serious long distance activity – be it cycling or running. But I’m not giving up.

You know this feeling when you hear a song you used to listen to until it came out of your ears? And you didn’t hear it for years (decades if you’re old enough) because it’s not one of these golden oldies or classic Stairway-to-Heaven rock songs that Radio Nova is playing.

And because you haven’t heard it for such a long time. And because life has changed so much in the meantime. The song has taken on a whole new different meaning than it had for you before. And there you are: listening to this really old song returning long lost and forgotten memories to you but hitting you right in your heart. Because it says all the things you wanted to shout into people’s faces for a long time, but hadn’t found the words?

That happened to me today when for whatever strange reason or coincidence I listened to I got life from the 1967 musical Hair. Watch it and listen to the lyrics.

I got life, mother
I got laughs, sister
I got freedom, brother
I got good times, man
I got crazy ways, daughter
I got million-dollar charm, cousin
I got headaches and toothaches
And bad times too
Like you
I got my hair
I got my head
I got my brains
I got my ears
I got my eyes
I got my nose
I got my mouth
I got my teeth
I got my tongue
I got my chin
I got my neck
I got my tits
I got my heart
I got my soul
I got my back
I got my ass
I got my arms
I got my hands
I got my fingers
Got my legs
I got my feet
I got my toes
I got my liver
Got my blood
I got my guts (I got my guts)
I got my muscles (muscles)
I got life (life)
Life (life)
Life (life)
LIFE!

It made me want to watch the whole musical again….

What an extraordinary day! What a extraordinary people!

The day ended with an out-of-this-world birthday party for Ruth this evening – who had asked her guests not to give her presents but donate what they would have given her to An Saol. She then invited me to talk to her family and friends at the party tonight, just before the meal was served. The reaction was almost overwhelming.

The day began with a drive to Longford, together with a new friend of An Saol, meeting the huge Longford group all ready to head off for Croagh Patrick – with a brilliant breakfast stop at “Into the West”.

At the bottom of the mountain, we met David and Joe – two absolutely inspiring men.

With such a broad support the An Saol cannot but succeed. Wouldn’t you agree?

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”.