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.

No one likes us, I don’t know why. We may not be perfect, but heaven knows we try.
Political Science, Randy Newman

Ministers, Senators, T.D.s, the HSE itself – all are expressing their support for Teach An Saol.

RTÉ’s Primetime programme published a lengthy article on their website and a segment in their live programme last Tuesday (see around 07:22 in the clip below).

“The An Saol Foundation is stepping in to fill the gap in services provided by the State. The Foundation plans to open a larger facility in Ballymun, including step-down accommodation that could help people avoid nursing homes.

“Dublin City Council has made a site available, but Reinhard Schäler says the project is now mired in HSE bureaucracy. “A year and a half ago, we were nearly there” he says. “Then everything stopped.”

“Reinhard says he is now filling in a new set of forms “for the same purpose” as forms he filled in previously. “It’s very hard to understand, and it’s very frustrating,” he said, noting that the HSE is in full support of the proposed project and has highly evaluated the current An Saol service.

“He says that there is no time to waste.

“We have an urgency here. We have the people here who need this now, not in five years or 10 years.”

Last Wednesday, the Minister for Disability, Hildegarde Naughton visited the An Saol Foundation and promised to get to the bottom of the matter of the inexplicable, dreadful inertia of the HSE bureaucracy.

On Wednesday, the same day Minister Naughton visited the An Saol Foundation, Paul McAuliffe of the Oireachtas Joint Committee on Disability questioned the HSE about their support for the An Saol Foundation’s Teach An Saol Project. In his reply, Bernard Gloster, CEO, complimented the An Saol Foundation on their excellent work and said that he would be more than happy to meet with us to advance the Teach An Saol project.

Did you hear Paul’s really funny reference to this German man who, with the best will in the world, cannot understand the Irish bureaucracy?

My main concern, our main concern, is to plan ahead for Pádraig’s future, and the future of our friends in the An Saol Foundation. Because we are better together. Because we take responsibility. Because we strive for healthy living.

At the Centre of this plan is the An Saol Foundation and Teach An Saol with its four hubs: therapy, social, respite, and transitional supported living.

It must be realised, as a whole, in good time. Only then will it be useful.

If that turned out to become impossible, it will be, again, every man, every family, for themselves.

After all the effort so many people put into this project, that would be tragic, to say the least.

We have passed the point where expressions of support and niceties will do.

Seriously.

We need action now. We need to see evidence that politicians take responsibility, that they do more than making promises, that they have realised they were elected for a reason.

That is political science.

We have No Time To Waste.

Three brave decisions: Silence, Saying No, And Walking Away.
John Rohn

Pádraig won a scholarship to study and swim in Lexington, Kentucky, following his leaving cert.

During the week, I came across his picture (above) from a competition when I was looking for something else in his old room upstairs. It reminded me of this time when he was aiming for the stars in the pool.

He experienced what it meant to swim for a First Division US College: focussed training, fantastic tutoring, and free travel to competitions across the United States. The undergraduate programme in Kentucky covered four years. He was going to be able to develop to his full potential with any possible support behind him. Without having to pay a single cent. It felt like a dream come true.

During the first year, when we visited him, we noticed how his physique was changing. Broader shoulders, more muscles. He was changing from a boy to a man.

Pádraig enjoyed the camaraderie, his and his team’s swimming successes, and the guidance he got from his fantastic swimming coach and his knowledgable academic tutor. Swimming came first but, like all scholarship students, he also had to perform well academically in order to continue with his swimming programme and scholarship.

The possibilities and the promises were endless.

It was an exciting year for Pádraig. But not exciting enough to make him stay a second, or third, never mind a fourth year. He missed his friends, the Dublin music scene, the Irish speaking community, his family. He realised the magnitude of the sacrifice he had to make in order to, perhaps, get a chance to swim, one day, in the Olympics.

In the end, he decided that while he clearly had a good chance to make it to the Olympics, there was no guarantee he would actually make it.

He stayed on and did his very best for his team. But then, he decided to say ‘no’ – he garnered all his courage and decided to walk away.

It was an incredible brave decision, one that not everybody supported or understood.

It turned out to be one of the best decisions he had ever made in his life.

Back in Dublin, studying Irish and History in TCD, he had the time of his life. As happy as one could wish to be.

He had decided to go for a different galaxy and became one of the brightest of a Sky Full Of Stars.

The moment he closed that door to a potentially great, but ultimately lonely, swimming career, another one opened up. One that brought him a deep feeling of happiness. A sense of belonging and of purpose.

This time, the change we saw in him was less physical, it was more in the way he was: ‘rundherum’ content, balanced, and happy.

Most amazingly, like in a sky full of stars, the darker it got the brighter is shines.

The trust of the innocent is the liar’s most useful tool.
Stephen King

Today is Pentecost. Reason to hope and pray that the Holy Spirit will help those who can allow us to make a difference for the ones we love, see and understand that they will need to act. Not at some time in the future, not following the slow and horrible death of more people, not following another enquiry into how their medieval treatment could have been allowed to continue despite all of us knowing better. But now.

Euripides was a real innovator in the representation of traditional, mythical heroes as ordinary people in extraordinary circumstances, known for his unparalleled sympathy towards all victims of society. No better parallel to Pádraig’s approach to life. Some of Euripides’ writing is full of humour. Another of Pádraig’s traits. As long as the humour is not German he will always share a great, brilliant smile with you when listening to a funny conversation or a good joke.

Trust is an issue that came up repeatedly over the past week. It made me wonder how innocent I am. We all are. And how much we support liars with our trust. Which begs the question: should we smarten up a bit? Like, now? Right now? Instead of becoming accomplices?

Trust in those who are supposed to look after you

Barak Obama has been quoted of saying, “If the people cannot trust their government to do the job for which it exists – to protect them and to promote their common welfare – all else is lost.”

Trust in Government and the Civil Service

Since the programme was aired earlier in the week, all hell broke loose. First, it transpired that the nursing homes in question had been given a clear bill of health by the State’s inspection authority. Consequently, the very competency of that Agency was called into question. Which was followed up by reports about the unbelievable amount of money some of these commercial, private nursing homes are making.

There is a reason, many families in the An Saol Foundation ensured that their family members were either removed from nursing homes and brought back home, or never went to a nursing home in the first place.

You could give that ‘reason’ many names, but it all boils down to their fear for the life of their loved ones.

The elderly shown in the documentary were vulnerable and helpless. But they had a voice.

Our injured family members don’t. Literally.

So, if we cannot have trust in those who are supposed to look after our relatives, if we cannot have trust in those who should monitor them, then our relatives cannot, cannot, live in nursing homes. Because they would be left there entirely at the mercy of profit-making, staff-restricting, and merciless multinational conglomerates. Without any chance to protest or call for help because of their condition.

Why the Government doesn’t, right now, make the funding available to the non-profit, charitable An Saol Foundation for its ‘House of Life’, Teach An Saol, is beyond comprehension.

Morning Walks

Early in the bright early summer mornings, I am alone walking through the nearby park. No distractions. So I see things, that would be drowned completely in the noise and business of my ‘normal’ day. Last week, I took some pictures of these moments.

Yesterday, we were watching the “Celebration of Life” of Dylan Leonard. He was 17 years old when, last week, he tragically passed away.

On the 6th of October 2024, while in Sicily, his sister Hannah was completing her final long distance training run for the Dublin marathon. Sadly, she never got to finish the run but was hit by a car and suffered a devastating brain injury. She is now in Beaumont Hospital about to be transferred to the NRH in the coming weeks.

Everyday is a school day. Right?

What did you learn in school today?

I learned that I have to smarten up so I am no longer a most useful tool for liars.

I learned that being busy, spending my days filling in forms and sending out emails, again and again and again, does not necessarily make any difference to anybody or anything – except that it wears me out.

I learned that what appears big is just that: appearance. No need to fret.

Finally, and tragically, I learned (again) and I was reminded that just when you think things couldn’t get worse, they do.

Therefore, enjoy every second of your life. It is as good as it gets.

Information has no scent.
Anon.

Life only receives its brilliance from inactivity, writes Byung-Chul Han, who, according to many in the know, is the most renowned contemporary philosopher today and one of the most widely read in the world. His writings are pretty dense and to fully understand how he a at that conclusion you might want to read his “Contemplative Life” or, at least, the CC article about it.

True happiness is due to beautiful gestures that serve no purpose, is another one of his quotes.

He explores the widely used concept of information has not scent from a whole new perspective.

How do I connect these ideas?

I cannot be creative when I am in a panic trying to meet deadlines. I need calmness and a clear head.

I am most happy when I let go, leave the world with its worries behind, and aimlessly drift without any purpose in the universe, carefree.

What is really important is less determined by gold standard randomised double-blind placebo control (RDBPC) studies, nor by hard statistics and solid, cold information. These provide knowledge but lack depth, they don’t last, and, above all, they are never creative. They are based on what already exists. As does AI.

To change what is already there requires scent, creativity, hope, feelings, longings, curiosity, ambition.

Last week was Pádraig’s 35th birthday. It was busy with little time for reflection.

Friends called over to celebrate with him, and – for the first time in a long time – family was over from as far away as the US and Australia. Together perhaps for the last time in this life.

It was a very happy day.

His birthday, 12 years ago, was also the last day we were with Pádraig prior to his accident. We went off to Germany the next day and he took off on his J1 to Boston.

Being with the ones you love and living with them is what is important. It is never always easy. Never always pure happiness. But there are moments, depths, scents, and love you will never forget, those that count.

The rat race of our society where you have to be non-stop busy, ruthless but ready to agree to foul compromises, devoid of ethics and morals, where only success, not the means, counts, — does not allow us to live that kind of life.

Filling in forms. Resending the same emails a dozen times. Expecting decency and common sense from people whose world is dominated by the desire for a bigger car, a bigger TV, a bigger house, the next promotion, and more instagram followers. – Is all that not futile and a waste of the little time we have here together?

How can I be myself instead of allowing others to define me?

Is Pádraig providing guidance for the way we should live? I know few who have moved and inspired more by doing “nothing”. Just by being himself in his gentle way, brilliance, and genius.