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.

You may run the risks, my friend, but I do the cutting.
Blondie (in: The Good, the Bad, and the Ugly)

Sergio Leone’s 1966 movie made it easy. There were good, bad, and ugly people. Some were taking the risks, others made it happen by cutting the rope.

The world has been ok in the past few weeks. The summer came and never left. Pádraig can do at least some of his exercises al fresco. The sky is blue. The air is clear. The ocean calm. The people are happy.

I had the unique opportunity to travel to Arizona last week, just for a couple of days. Coming into Los Angeles and driving down to Phoenix through the Mojave Desert and Joshua Tree National Park.

It was a trip like no other.

The endless desert. A mystery pool that made me look for the body floating upside down in the water. Breakfast with powder-made egg, muffins, sweet maple syrup waffles, paper bag portion sized cinnamon oatmeal (in German, this would have been one word). A sign warning guests not to hang their coats on a sprinkler as that would cause flooding.

Bob Dylan triggered memories and made me wonder about the world again while I was listening to a selection of his incredible poetry for the best part of six hours. When would I ever have the time to do this but on an endless desert road trip?

While in Phoenix I visited Barrow Neuro-Rehabilitation. Their general Neuro-Rehab centre. Their Neurological Institute. Their Centre for Transitional Neuro-Rehabilitation. Their Outpatient Centre. Their Functional Strength and Robotics Gym. Their Ashlyn Dyer Acquatic Centre with a submerged threadmill.

I only saw pictures of their Brain Computer Interface (BCI) work. Barrow is one if not the leading centre for this work in the US and partners, among others, with Elon Musk’s Neurolink. A paraplegic man recently managed to use several devices just thinking about what he wanted to do via brain implants connected to computers.

Barrow is located in what looked to me like the middle of the desert. It’s endless. Big. Truly impressive. The US’s best brain tumour surgeon works here saving lives that others have given up on. Getting people back to their work and their families.

As in the previous week in the Seanad, when Senator Aubrey McCarthy presented a Commencement Matter, the Minister of Health was not available and sent a Junior Minister. This time not from the Department of Enterprise and Employment but the Department of Agriculture.

By the way, I had invited the Minister of Health to visit us in Santry. Last Monday, I received a reply, just three months later (sic!), saying she was too busy to squeeze in such a visit, unfortunately.

Can you help me?

Who are the Good? Who are the Bad? Who are the Ugly?

The world is not the same as it was in Sergio Leone’s 1966.

In this new crazy world, do we have to take the risks and cut the rope? Is there anybody we can rely on?

Is it time for a new movie: “Once upon a time in Ireland”, by A Man with No Name, For a Few Dollars More? Music by the Dreamboaters? Starring the heroes who survived because They Would Rather Live. A celebration of their resilience, their monumental strength and defiance, and their dreams of a life worth living.

We cannot continue to tell families who are living through unimaginable challenges (…) that there is simply no money and we must go through more HSE processes.
Senator Aubrey McCarthy, 07 May 2025 in the Oireachtas
Organisations such as Teach an Saol are invaluable to the disability sector. I do not say that lightly. I say it because I believe it. Politicians in the Upper House and the Lower House will try to pursue the Departments to ensure they are proactive, progress solutions and deliver the outcomes the Senator has requested.
Minister Niamh Smyth, T.D., 07 May 2025 in the Oireachtas

The Seanad

Have a look at that picture above with Pádraig in Seanad Éireann. There we are, left to right, Senator Aubrey McCarthy, Minister Niamh Smyth, Senator Mary Fitzpatrick, myself, and Pat.

Senator McCarthy had tabled a commencement matter, asking the Minister of Health about her and her Department’s engagement with the An Saol Foundation. Jennifer Carroll MacNeill was busy and sent Minister of State, Niambh Smyth, to answer Senator McCarthy’s question on her behalf.

Senator McCarthy had invited us to attend the sitting of the Seanad to hear his question and the Minister’s response first hand.

The question hit the nail on the head, the answer was promising.

But not more.

For completeness: it should be said that Minister Niamh Smyth is a Minister of State, a “Junior” Minister, at the Department of Trade, Enterprise, and Employment with special responsibility for Trade Promotion, Artificial Intelligence and Digital Transformation. And this was her first ever appearance in the Seanad, just like our own.

She did really well which was perhaps helped by the fact that she did face less than a handful of Senators. Apart from Senator McCarty, Senator Mary Fitzpatrick, a long term supporter of the An Saol Foundation, was also present. Anne Rabbitte, who had promised the earth to An Saol when she was Minister for Disability (“You find the land and I will give you the money to build Teach An Saol”), was nowhere to be seen.

Click here to read the transcript and here to watch the Oireachtas Commencement Matter video recording of 07 May 2025.

A big THANK YOU to Senators McCarthy and Fitzpatrick for their firm and ongoing support for the An Saol Foundation and our Teach An Saol project! And, of course, to Councillor Gayle Ralph who had encouraged Senator McCarthy to visit the An Saol Foundation.

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The Park

During the week, Pádraig, like the rest of us, enjoyed the fantastic weather with blue skies and not a cloud to be seen.

No better week than this to head off to the park right beside the An Saol Foundation in Santry to check out the brilliant, accessible exercise equipment Dublin City Council has installed there and in many other parks around the City.

Remember the outrageous incident when his HSE OT and her HSE OT Manager (who had never met Pádraig) stopped the only Reck MOTOmed supplier in Ireland to sell us a MOTOmed with an arm trainer? And we had to buy it in and ship it to Ireland from Germany? – Never mind making it available from HSE stock as they could have?

They said it would be too dangerous for Pádraig to use it because his shoulder was subluxed. Check out the photos above: Pádraig doesn’t need a motor-supported arm trainer anymore. He can use a manual arm trainer, even those pretty standard models in Dublin’s parks. Humongous progress, not thanks to the established health professionals but thanks to his incredible determination.

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A Million Steps and 860 Kilometres

In a pretty busy week with lots of highlights, this one was without a shadow of a doubt the most outstanding one.

Our records show that in the past few years, Pádraig took 1, 079,034 steps walking, equalling 860,248 metres, in the Lokomat.

That is distance similar to walking the French Camino. Twice. Or walking all the way over to Germany.

It’s outstanding, an incredible achievement, and more than reason enough for a big celebration.

I wish Ministers, politicians, and civil servants were as consistent and proactive in their efforts and determined to progress solutions and deliver the outcomes.

Pádraig, those living lives like his, their families and friends, they not just deserve, they have a right to all the support they require to live their lives with their severe Acquired Brain Injury (sABI).

Act. Expressions of support and promises are not enough.