And into the wild we go, losing ourselves in music, finding ourselves in the magic.
Anon

We are not at the Electric Picnic, Ireland’s biggest and most popular music and arts festival. Ireland’s answer to Glastonbury. Famous for its Body & Soul area. And it’s mind blowing.

So, altogether, the Electric Picnic is An Saol all wrapped up in a long weekend caring for: body, mind, and soul.

To my shame, it was the first time last week, that I realised the great work one of the practitioners in An Saol is doing; she even brings in her complete set of singing bowls with each producing different frequencies and vibrations.

A local councillor posted an update of her work through the door with a picture we had taken before the summer of Part 1 of a meeting which should have had Part 2 happening some weeks ago. There is hope…

And the final picture is from a new, cool, 3D printed ‘button’ working with one of the magic adaptable controllers from Galway Startup Byowave who are collaborating with the An Saol Foundation on accessible gaming settings.

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I met with a young, 19-year-old man and his family in the National Rehabilitation Hospital yesterday. It was like a dejà-vu. There now is a brand new building, but for the young man who had suffered a severe Acquired Brain Injury things weren’t really that different from what Pádraig and us experienced during his stay there, around 10 years ago now.

Reading Kevin’s news about his daughter Hannah who is back in Beaumont Hospital. The anxiety. The wait for this phone call. The uncertainty.

There have been, and there are, moments when I just want to get away. Get into the car with Pádraig and Pat. And drive away.

And I don’t know why it was a thing with me—that irrational fear that kept me here.
Conor McPherson, The Weir

Jack’s monologue, and indeed the entire play, is a reminder to live fully, speak honestly, and take the chances that matter—because silence and safety can become their own kind of prison.

We can never become complicit. We can never abandon our sons and daughters and partners, as we are supposed to because they are lost cases anyways. Instead, we have to break out of this prison of silence and safety. And go Into the Wild.

Commitment is an act, not a word.
Jean-Paul Sartre

Why is it so difficult to align what we know with what we do? I never fully understood what a “dialectic” relationship is. This might be one. It’s a case of: well, on this side… but then again on the other side…

It’s a question like the one about ‘freedom to choose’ against ‘everything is planned for us already’; or ‘there is a moral imperative’ against ‘it all depends and there is no right or wrong’; or ‘life’ and ‘death’ decisions.

The thing is, whatever the answer, one has to make up their mind. Even if this is hard at times.

It’s even more complicated than just deciding. Because making up your mind is only the beginning. You say the word – that takes a second. Then you have to act – for a lifetime.

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The PhD student who had been working with Pádraig for more than three years came back last week to see Pádraig and us for a last time. When he went through the 14 sessions he had with Pádraig, it became apparent, how much hope, energy, amazement, and fun they all were. And how much work he had invested.

He will be handing in his PhD in a few weeks time. The lasting legacy from his work for Pádraig is mostly in memories and experiences rather than a change in Pádraig’s ability to access devices to communicate, to play and have fun, or yo play an instrument. Nevertheless, they were fantastic.

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Pádraig has made up his mind. He will not be quitting. He has a level of tolerance and hope, a believe in humanity and decency, and a focus, that are all extraordinary and inspiring.

It is him who keeps me going in times of doubt, sadness, tremendous disappointment, helplessness, disbelief, and desperation.

When I need to believe that I can do what I know. That I can commit and make my actions follow my words. I think of him.

Life is just a lame, less metal version of death, and that’s why only hippies care about it.
Philomena Cunk (Diane Morgan)

We are back.

It is late and I will keep this short. With pictures that, I think, capture the essence of our holidays: fun, tons of time in the wide open spaces, and spending time in the company of the most interesting people.

Fun

Have you ever watched Cunk on Earth? Here is Pádraig’s reaction when, as far as I know, he watched her show for the first time.

If you haven’t watched it, try it. He thought it was hilarious. If you have a little more time, watch her interview with Stephen Colbert on the Late Show.

Wide Open Spaces

From the North Sea Coast to the Rotterdam and Europe’s biggest sea port.

In the Company of Friends

You have seen Garding several times. But it’s always surprising. Not necessarily because of the quality of the music but because of the bands’ enthusiasm and dedication. Where would you find it: Four dead in Ohio, 50 ways to leave your lover, so people get ready because there’s a train a-coming, it’s gonna be a bright sun shiny day, nothing but blue sky, though yesterday’s gone and you’re feeling strong, in the purple rain.

The world, life, is good. Sometimes, we just have to open our eyes a little bit more to see it. With focus. And fewer distractions.

You say you want a revolution, well, you know we all wanna change the world.
John Lennon

Yes, I want a revolution. Just not because I “wanna change the world”, like John, but because I wanna safe it from itself. – Or would you call that a counter-revolution?

Let me get back to this in a minute.

Handscupe for iPad

Last week, we had a visit from Ellen, a bioengineering student from the Technical University of Dortmund. She had spent some considerable time adapting a Handscupe (R) for Pádraig. It’s kind of a souped-up version of what the PhD student in Dublin had built – and which Pádraig could not use without his support because of its complexity.

Ellen’s version has a built-in giroscope, as well as five long contact strips, one for each finger, which work just like keys on a keyboard, or mouse buttons, and which can be configured using Anaconda Navigator, Arduino, the Spider IDE, and a Python script. If you think it sounds a bit technical, you are right. Ellen gave me an intensive short course on this – but I have decided not to touch the configuration unless I really have to. I don’t want to mess it up.

Pádraig can now use the Handscupe as his access method to the communication tool Predictable, to a video game, and, amazingly, to any app running on an iPad.

So he tried Spotify.

A word of caution: turn down the volume of your device before watching the video below – just click on the picture.

Here are a few stills of Pädraig using Predictable by both clicking his way through different sections and by using one of the configurable keyboards.

It is still early days and it will take a lot of practice on Pádraig’s and on our part until we’ll be able to fully and consistently use the Handscupe and iPad navigation. But this is a big step forward in the right direction.

On Tuesday, we went back to Garding. As the clouds were hanging low and there had been frequent showers during the day, the organisers had decided to go indoors – to my knowledge for the first time in the long history of :Garding’s Tuesdays Summer Music Festival.

Musik für Garding – Indoors

Jesus is hanging from the cross over the altar of Garding’s historic church St Christian, the second oldest church in Eiderstedt in the North of Germany, reportedly built in 1109/1117. Tuesday, 06 August 2025, was a rainy day and as it was one of the days of Garding’s Tuesday music summer festivals, the church opened its gates to the music lovers who immediately bonded with this highly unusual rock music venue. Pádraig enjoyed the venue, the music, the atmosphere. Nothing like the acoustics of a 1000 year old church!

Watch this is a short video clip of the live act.

Between the Showers

On the few occasions that it didn’t rain last week, we went for walks.

For the first time in our lives, we saw a bicycle recharging station, complete with an electric pump and some basic repair tools – just behind the dike in Westerhever and free to use for anybody who needed them. While the tools for the bicycles were free, parking was not. Not anywhere. Not even for wheelchair cars.

Hard Work

Pádraig also went back to see Esteban, a brilliant OT from Chile who, only God knows why, has been working in Tönning for the past few years, about half an hour away from our base.

He got to know Pádraig pretty well over time and both are getting on really well with each other.

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The thought came to me during the week: What if –

This is as good as it gets?

Do I really want the world to change even more, to drift, or being pushed, into a direction where even common decency, never mind common sense, seems to be a thing of the past and lunatics are pushing the world to the brink of chaos?

Last week saw the 80th anniversary of the bombing of Hiroshima and Nagasaki by the US Air Force using atomic bombs for the first time in history. “Never again” was anything like this, ever, to happen again. Now that an international rule-based system is being replaced by the right of the strongest, those lessons from history don’t seem to be remembered anymore.

There is a revolution happening and it is being televised. It is one that needs to be stopped.

I am with John and his chorus –

I want a revolution, well, you know we all wanna change the world.
But when you talk about destruction
Don’t you know that you can count me out?

What’s spoken isn’t always heard, What’s felt can’t be contained.
Theodor Storm

There is more to the picture than meets the eye.

And there is only one place to experience live music in July and August. Some people say it’s even better than Wacken (WAAACKEN!!!), down the road from Tating, on the first weekend in August. I say the true highlight of the summer is Garding, right next to Tating, Germany’s second smallest city, where “Musik für Garding e.V.” organises three open air stages every Tuesday in July and August with the finest music north of the river Elbe. Pádraig is a regular visitor here, as he was last Tuesday, 29 July 25. As every Tuesday evening in Garding, we had a Bratwurst, shared a Currywurst, each had a Jever, and, as a desert, shared a Crêpe with Zucker and Zimt.

There is no place like Garding on Tuesday evenings in the summer: It’s pure fun, with no excuses being made for anything, and with tons of pride for just being who you are. Completely nonjudgemental. Open. Tolerant. Easy going. No matter the age, appearance, or condition. A place the world could learn from.

They say “Great Projects require strong Partners”. Those organising music for Garding do that in a registered association, an “Eingetragener Verein” or “e.V.”, a legal form unique to Germany. They turn the otherwise abandoned “city” of Garding into a lively, mad Hub for people who are anything but mainstream in a region that in the summer couldn’t be more German, more mainstream.

It’s completely surreal, absurd, bizarre, mad, and eccentric. In one word: Wonderful.

We walk out to the beach, the dunes, and the dikes. The Arche Noah is still our favourite destination. It brings me back 50 years when I spent my summers here with my family, not just working but living here, a mile off the coast, basically out on the sea. While the owners since changed and with it the ambiente, the magic of the place remains the same.

We’re living the life.

We drive a slightly bigger car to accommodate the wheelchair. Pádraig sleeps in a bed that moves up and down and even allows him to (nearly) stand. We exercise together for the best part of an hour every day. We have BBQs, prepare really good meals, and go out for dinner – as you would when you are on holidays.

We are out and about as much as the weather allows. We admire the vastness of the horizon, the dramatic sunsets, the wind driving the sand across the dunes.

Words can vanish without being heard. But our hearts speak so forcefully they cannot be ignored.

We rock ‘n roll. We are here to stay.

Hey hey, my my.

Hey hey, my my
Rock and roll can never die
There’s more to the picture than meets the eye
My my, hey hey

My my, hey hey
Rock and roll is here to stay
It’s better to burn out than to fade away
My my, hey hey

We will keep rockin’. Rust never sleeps. We might burn out but we won’t fade away. Rock ‘n roll can never die. Because there is more to the picture than meets the eye.

When values are clear, decisions are easy.
Roy E. Disney

From a distance, the world looks blue and green and the ocean meets the stream. Values seem clear. Decisions are easy. The Northwest is far enough to get this clear view.

It’s my second arrival here in less than one week. I don’t need a third time to realise how lucky I am.

The views here are second to none and the horizon is so far, far away. There is nothing standing in the way. Nothing to distract.

For the first time, there is a summer festival on with a big market, big rides, big sculptures, and big gates made of simple palettes.

This is as good as it gets. This is what counts. We are together. Alive. Living. Taking it all in. Sharing it amongst us.

I lost three of these days last week because there was an important man I had to meet.

Managing on their own over those three days was not easy for those I had left behind.

We’ll find out over the coming days and weeks, whether it was worth it.

If you have a few minutes, listen to the most wonderful, young, magic voice of Nancy Griffith singing one of the most poignant songs you could listen to these days.

From a distance, we all have enough
And no one is in need
And there are no guns, no bombs, and no disease
No hungry mouths to feed

How happy we could all be if we managed to get that distance between us and the reality ‘on the ground’. Or better, if we realised that even being near each other we could live together without guns, bombs, disease, injustice, and hunger.

The world would look blue and green and the ocean would meet the stream.

Human misery is too great for men to do without faith.
Heinrich Heine

It’s that time of the year again. We are on our way to the Vaterland’s North-by-Northwest. Only that ours is not “a fantasy”, like Hitchcock noted in an interview with director Peter Bogdanovich in 1963 about his place. Ours is a very real place.

Just getting there is a bit involved. A ferry to Holyhead, a drive across England, another (night) ferry to Rotterdam, a drive into Germany, overnight, and another drive up North towards Denmark.

We enjoy this trip. We take it easy. Taste different food and drinks. Air. Rain. Sun. People. Languages. Cultures. Sounds.

Last week I read, for the third time, an article from the May/June edition of The Atlantic, called THE MOTHER WHO NEVER STOPPED BELIEVING HER SON WAS STILL THERE, about what happened to Eve Baer’s sone Ian. The most important lesson from Eve’s, Ian’s, and their family’s experience is that for their family, this is “not a sad story” but one of “enduring love and human connection“.

A lesson for bureaucrats.

Not everybody can be cured. But everyone can heal. Everyone can live their lives with dignity, respect, fun, inclusion, equality, participation. With the right support.

A lesson for physicians.

We’ll get to the North on Monday. I’ll be back on Tuesday to meet Bernard Gloster in An Saol on Wednesday. Back on Thursday.

Much of human misery is manmade.

It can be changed by man.

Hope is praying for rain, but faith is bringing an umbrella.

I don’t just have hope, I know and have the faith that the rain will come.

The ultimate question for a responsible man to ask is not how he is to extricate himself heroically from the affair, but how the coming generation is to live.
Dietrich Bonhoeffer

Life is about making compromises. Relationships, politics, work, care — none of these function well if we stick rigidly to absolutes all the time.

No Compromise on Core Values

Bonhoeffer was a theologian and philosopher who resisted the Nazis. He was hanged on 9 April 1945 during the collapse of the Nazi regime. He had known all along that his life was in danger because he took a stand.

His view was that decisions, especially hard ones, should be made with long-term ethical consequences in mind, not just short-term self-preservation. Instead of following the more Machiavellian or utilitarian ethics which are about short-term wins – even if they are morally, ethically, and in the long-term, questionable. He shifted the focus away from personal survival, heroic posturing, or immediate success. Instead, he calls for decisions that are morally responsible in a long-term, intergenerational sense.

His view was very close to that of Immanuel Kant who in his 1785 Metaphysics emphasised duty and moral principle rather than convenience or outcome, a view that formed the foundations of his categorial imperative.

Act only according to that maxim whereby you can at the same time will that it should become a universal law.

While life is about making compromises, there can be no compromise on what is right and what is wrong.

We cannot allow the coming generation of people with a severe acquired brain injury to be ignored and to be put away in inadequate care facilities, far away in a business park or out in the ‘sticks’ somewhere on a green field site. Out of sight – out of mind.

There will be no compromise on our core values.

Lighting the fire

I had never thought that there was an alternative to the classic BBQ if you wanted to bring together friends for a meal on a warm summer’s day in the garden. Then, on Saturday afternoon, one of Pádraig’s friends brought along a snazzy fabulous out of this world ooni wood fired pizza oven for Pádraig’s summer garden party with his friends..

Life couldn’t get much better.

A perfect example for the disability paradox:

• Nondisabled people assume disabled people have a low quality of life, which contradicts what people with disabilities experience.
• Affective forecasting errors are common; people regularly overestimate how intensely happy or sad events will make them feel.
• Learning from people with disabilities about adaptation can reduce ableism and remind us of our resilience.

Albrecht and his colleagues wrote about it in Social Science and Medicine. Their scientific paper confirmed that 54.3% of the respondents with moderate to serious disabilities reported having an excellent or good quality of life.

The BBC made a full report about this phenomenon.

A Hitchhikers’s Guide to the Universe

Here are two quotes from Adam’s fabulously revealing and outrageous Hitchkiker’s Guide to the Universe.

A common mistake that people make when trying to design something completely foolproof is to underestimate the ingenuity of complete fools.

There is a theory which states that if ever anyone discovers exactly what the Universe is for and why it is here, it will instantly disappear and be replaced by something even more bizarre and inexplicable. There is another theory which states that this has already happened.

Even when something is so evidently clear, we do underestimate sometimes the ingenuity of complete fools. We will never understand the Universe and its intentions because the moment we get a glance of that understanding it immediately becomes even more bizarre and inexplicable.

Decision Time

We have reached a juncture at which we have to decide whether we will do the right thing.

Or whether we will give in to the ingenuity of fools, and the bizarre and inexplicable Universe.

We have no more time to loose.

We carried you in our arms on Independence Day, and now you’d throw us all aside and put us on our way. – Bob Dylan

The lyrics of Bob’s song Tears of Rage, first recorded in 1967, speak of profound love, betrayal, and the incomprehensible pain of watching someone suffer unjustly. They are a cry against a system that too often neglects the most vulnerable. Tears of Rage captures the sorrow and the urgency to ensure that every person, no matter how profoundly injured, has the right to a meaningful life.

Pádraig carries us and we carry him. He has an incredible trust in us that we do the right thing. While some might think, “What other choice has he got?”, I can tell you that he has.

Instead of giving up, he has not just continued to live his best possible life, he also has inspired the work of the An Saol Foundation. Throwing him, and hundreds like him, aside and put them on their way instead of doing everything in their power to bring Teach An Saol over the line would be a betrayal of the incredible trust he and so many others have placed in us. It would be ethically and morally unjustifiable. It would be a tragedy.

We have no time to loose.

The Delta Centre

We recently went to Carlow, just over an hour away from Dublin. Apart from the wonderful Waterlilies Cafe and Bakery run by Pádraig’s friend, Carlow is home to the incredible Delta Centre. They provide training, residential, respite, day and multi-sensory services to adults with learning disabilities. Pretty similar to what we want to achieve with An Saol. As in our case, it was set up by a family in response to a lack of services by our health system.

What they have achieved is truly breathtaking and their insight and support for our work is incredibly encouraging. Their sensory garden is spectacular and, by itself, worth a visit to Carlow.

Change Is Here

We stayed overnight and followed the advice of Carlow-based friends Pádraig made in the National Hyperbaric Centre, and had a fantastic dinner in Mimosa, again, by itself, worth a visit to Carlow. The food was exceptional, not as overpriced as in Dublin, and they could not have been more accommodating.

Groundbreaking

All this paired with some truly groundbreaking new tech support and prototypes for communication and entertainment, online meetings with a world-leading research group in Harvard, we experienced an alternative to the constant, endless-seeming discussions about the same topics the system still seems to find too challenging to grasp, a system whose culture will have to try harder to align better with the needs of the people it is supposed to serve.

We will not be thrown aside.

No more Tears of Rage. No Time To Loose.

We lead dthe way.

One day I will find the right words, and they will be simple.
Jack Kerouac (Some of the Dharma, 1997)

Last Friday was the day, 12 years ago, at 10am local time, that Mark Couto in his 4.3 ton pickup truck clipped Pádraig’s handlebar on Route 6A. Pádraig’s head first hit the A pillar on the right side of Mark Couto’s truck leaving a dent in the heavy metal and then his head hit the road.

On my way from Hainan to Hyannis, I listened to Forever Young. Again and again. I tried to remember the lyrics to distract my mind. I did that again last Friday and cried. Again.

I hoped that all this was a bad mistake. This is stuff of terrible news reports. This does not happen to my son.

A nurse who happened to jog down the road revived him. The police, later investigated by the Office of the Attorney General of Massachusetts, told us that he had cycled into the way of a truck and issued a press release to the same effect within a couple of hours, adding that the driver was not cited – he also was not tested for substances, his car was not impounded, and his phone records not checked. In hospital, doctors asked his friend who had rushed in to support Pádraig, not once but twice, to consent to organ donation. When we arrived the next day, they told us, repeatedly, that he would have an intolerable life and suggested that his organs could dramatically improve the lives of three or four very sick people.

Back in Dublin, and following what amounted to a dramatic evacuation in a Learjet, we were asked which nursing home he was going to go to; a specialised rehab nurse even suggested at his bedside that it might have been better had he died.

Rather than being dead, he is now the inspiration behind the An Saol Foundation and its world-leading rehab centre for people with a severe Acquired Brain Injury. He became a champion with the Decision Support Service for the 2015 Assisted Decision Making (Capacity) Act, a very public campaigner for equal rights, the star of an award-winning radio programme, and a contributor to book and scientific research publications. A trail blazer.

Look at the stars
Look how they shine for you
And everything you do

He realised one of his dreams: travelling to Alaska. He gets the ferry to Bilbao once a year for Eastern. Spends time in Tating. Loves his family and friends, especially his young nephew.

Life is not only tolerable. It is pretty ok. Most of the time.

Most of the time
I’m clear focused all around
Most of the time
I can keep both feet on the ground

I can follow the path
I can read the signs
Stay right with it
When the road unwinds
I can handle whatever I stumble upon

Some time there is sadness, there are memories, feelings of the loss of youth and innocence. There is worry about what the future might hold.

I have lost my “Unbeschwerte Unbekümmertheit” and all that went with it. I have gained the deepest understanding of what it means to be alive, and to have found a love I might have chased forever without ever having found it. A heart needs to break before you can mend it.

One day we will find the right words, and they will be simple.