Run, Ryan! Hard!
(Someone shouting at me during the Hamburg Marathon)

I posted the below last Monday, but with the wrong date: 04 April 2026. So, if you missed it – here it is again (see below, following the update…).

This weekend we are travelling with Pádraig back to Pforzheim for a week. For old time sake, but also to spend some time with the truly amazing people who helped Pádraig so much. Not just in the early days, but over many years prior to An Saol. What we learned there, as well as in Burgau, Torrelavega, and other places, has shaped our work and keeps inspiring us.

When Pádraig was in unimaginable pain and nobody could or was prepared to help him, in utter despair, we travelled, at the height of COVID, to Pforzheim and to Burgau, and then on to Munich, where Pádraig was saved. A third time. Where we met people who are still supporting our work, Pádraig and our clients in An Saol.

The journey from Hamburg back to Dublin was pretty horrible. The Ryanair plane had to be fixed by an engineer who had to be flown in before we could, eventually and very late, depart Hamburg. Hopefully, none of that stuff will happen on our way to Frankfurt and Pforzheim, nor on our way back. Fingers crossed.

Following my last (not so) long training run, I just about made it home. I felt awful.

A week ago, I realised that I had forgotten to book my flight to Hamburg. Maybe the Universe was telling me: Don’t go.

Last Sunday morning, I still wondered should I really do this.

Registration on Saturday was out of this world. The queues went through two huge exhibition halls and the big space between them. I’d never seen anything like it. The course was the same as every year. Very beautiful, especially the first half, along the Reeperbahn, the river Elbe, the harbour, the inner and outer Alster lakes. Very daunting.

The morning was freezing cold, not a cloud in the sky.

I was placed in the very last starting block. I might have placed myself there when I registered. My aim was to make it over the finishing line in time.

The mix of people around me was fascinating. From smokers to featherweight men and women who didn’t seem to touch the ground when walking, never mind running.

By the time we started, the elite runners were nearly half way back home. We could watch them on a giant screen.

There were itches and slight pains in my knees, in my hips, under my feet. They were gone after a while and replaced slowly but surely by breathlessness and exhaustion.

There must have been a hundred people along the route who shouted out my name telling me that I looked brilliant, that I would make it, that I was almost there, and that I just had to push on, At some stage, a spectator came out, grabbed my hand and run along with me.

There are details I don’t remember at all. The run through the tunnel at the main station. The way up Hamburg’s never-ending heart break hill. The water stops. The toilet stops. The salt tablets and the gels.

Eventually, I made it over the finishing line in good time (for me:).

I walked back to my hotel, taking in more of the sights of Hamburg, stopping for an early dinner.

I was exhausted but felt great. I had beaten my own doubts.

No injuries. Finished in good time. Able to eat and walk back to my accommodation.

I talked to Pádraig, family, and friends many of whom had tracked my run – which turned out to be slightly faster than last year and at a pace I had rarely surpassed during my much shorter training runs.

I couldn’t have done this, the training, the trip to Hamburg, the race, the time away, without the help and encouragement of my family and friends. I am so grateful to them.

Pádraig gave me a big thumbs up in a video he sent me.

I don’t think life is a marathon. Life is much harder and totally unpredictable. But finishing last Sunday made me feel that I’m still rocking, in for the long run.

Not just for the winners, even for me it was a Marathon of records.

First I felt like dying. Then I felt reborn.

Whatever it is, bring it on.

Miracles happen everyday, change your perception of what a miracle is and you’ll see them all around you.
Jon Bon Jovi

They took the crutches out of the Grotto.

Which doesn’t mean that miracles stopped happening, not in Lourdes nor in other places. They continue, in more subtle ways, every day.

You also don’t get a full-body dip in the baths anymore, you just do a ‚water gesture‘, wetting your face with water from the holy well.

Which doesn’t take away from the healing power of that water.

But it takes away a little of the magic.

Because when I went to Lourdes for the first time with my grandmother who had given me the Lourdes pilgrimage as a present for my first holy communion, for me the big Lourdes miracle was that I didn’t need a towel to dry myself after the baths.

When Pádraig went on his first journey to Lourdes, following his accident, the magic did return, though in a slightly different way.

He wasn’t able to go to the baths then, to the water, because he was still to weak. So some men of the order of Malta, lead by Christoph, decided to bring the water to Pádraig, in huge containers.

They brought it to the Accueil‘s large accessible bath and shower room on the second floor where Pádraig, on a waterproof plinth, and all of us who participated in the action, had an incredible, spiritual experience. With an unexpected ending.

It turned out that the room hadn’t been used for some time and all the drains were blocked.

We only noticed that when we were bringing Pádraig back to his room and, literally, had to walk on water that covered not just the bathroom but the entirety of the Accueil‘s second floor.

I had to think about this memorable day again recently when I heard a radio programme commemorating the 80th anniversary of the death of Clemens August Graf von Galen, the former bishop of Münster, who very publicly and courageously spoke out against the inhumane policies of Germany‘s Nazi Government lead by Hitler.

Including the innocently called, but nonetheless utterly horrific, „Aktion T4“. His sermons in 1941 significantly contributed to the decision by the government to officially stop the programme – though, unofficially, it continued for many more years.

“T4” referred to the address Tiergartenstraße 4 in Berlin, the headquarters of the organisation coordinating the programme.

Between 1939 and 1941, and covertly afterwards, people with disabilities, people with mental illnesses, and others classified as “unworthy of life“, as a costly drain on society, the „Volksgemeinschaft“, were systematically killed. Hundreds of thousands of them.

They were driven around the block in the back of vans with the exhaust pipes redirected into the back, killing those in it. A first version of the infamous gas chambers. They were given lethal injections. Or killed through deliberate starvation

Christoph, the man who brought the holy water to Pádraig, when Pádraig couldn’t make it to the water, turned out to be a nephew of Clemens.

He, as did his uncle, recognised, believed, knew, that there is no „unworthy life“ – and both were prepared to stand up for their believe. Instead, they were moving mountains, and huge water containers, to stand up for those who needed their help.

You cannot put a price on human life.

We might have different views on the power or even the existence of miracles.

But today, we are united in our believe that everybody has the right to the support they need to live their lives with dignity and respect – even if there is ‚no return‘ on that ‚investment‘. Today, we recognise that resources are never wasted when used to support people who need that support so desperately. Today, we respect the life of all of our brothers and sisters – no matter what kind of injury they live with, what kind of disability they have, or what medical condition they suffer.

The 1941 sermons of Clemens August Graf von Galen, Bishop of Münster, who died 80 years ago, continue to show us the way.

They still encourage us to speak up and say, “We Would Rather Live.” To say: Do not see care for those with severe Acquired Brain Injury (sABI) as a drain on society, but as an opportunity to show our brothers and sisters what it means to “live our humanity.”

First you feel like dying. Then you feel reborn.
(Anon.)

Following my last (not so) long training run, I just about made it home. I felt awful.

A week ago, I realised that I had forgotten to book my flight to Hamburg. Maybe the Universe was telling me: Don’t go.

Last Sunday morning, I still wondered should I really do this.

Registration on Saturday was out of this world. The queues went through two huge exhibition halls and the big space between them. I’d never seen anything like it. The course was the same as every year. Very beautiful, especially the first half, along the Reeperbahn, the river Elbe, the harbour, the inner and outer Alster lakes. Very daunting.

The morning was freezing cold, not a cloud in the sky.

I was placed in the very last starting block. I might have placed myself there when I registered. My aim was to make it over the finishing line in time.

The mix of people around me was fascinating. From smokers to featherweight men and women who didn’t seem to touch the ground when walking, never mind running.

By the time we started, the elite runners were nearly half way back home. We could watch them on a giant screen.

There were itches and slight pains in my knees, in my hips, under my feet. They were gone after a while and replaced slowly but surely by breathlessness and exhaustion.

There must have been a hundred people along the route who shouted out my name telling me that I looked brilliant, that I would make it, that I was almost there, and that I just had to push on, At some stage, a spectator came out, grabbed my hand and run along with me.

There are details I don’t remember at all. The run through the tunnel at the main station. The way up Hamburg’s never-ending heart break hill. The water stops. The toilet stops. The salt tablets and the gels.

Eventually, I made it over the finishing line in good time (for me:).

I walked back to my hotel, taking in more of the sights of Hamburg, stopping for an early dinner.

I was exhausted but felt great. I had beaten my own doubts.

No injuries. Finished in good time. Able to eat and walk back to my accommodation.

I talked to Pádraig, family, and friends many of whom had tracked my run – which turned out to be slightly faster than last year and at a pace I had rarely surpassed during my much shorter training runs.

I couldn’t have done this, the training, the trip to Hamburg, the race, the time away, without the help and encouragement of my family and friends. I am so grateful to them.

Pádraig gave me a big thumbs up in a video he sent me.

I don’t think life is a marathon. Life is much harder and totally unpredictable. But finishing last Sunday made me feel that I’m still rocking, in for the long run.

Not just for the winners, even for me it was a Marathon of records.

First I felt like dying. Then I felt reborn.

Whatever it is, bring it on.

I cannot nor do I want to sing for the crucified Jesus—but for the one who walked on the sea.
No puedo cantar ni quiero a este Jesús del madero sino al que anduvo en la mar.
La Saeta, Joan Manuel Serrat

Easter is, arguably, the most important date on the Christian calendar.

Following the suffering and death of the Passion, Easter Sunday draws us to life, movement, and hope. It shifts our focus away from the image of the Good Friday crucifixion toward the resurrected, living, and active presence of Jesus. In Easter, we encounter renewal, possibility, and the promise of life beyond the Passion.

Our Easter journey to the Semana Santa in Spain is all about life, movement, hope, living, renewal, possibility, and life beyond the suffering.

Here are a few snapshots. From the journey, the workouts, and the pure joy of tastes, sensations, smells, and textures.

Journey

We stay in nice places, right beside the sea. A few days in Santander. A few days in San Sebastián.

We go for walks. Along the sea. Through incredible tunnels. Crowded streets. In sunshine. In rain. Steep hills. Up and down.

Workout

Years ago, we found a very good Neuro Rehab practice owned by two brilliant physios/OTs who do pretty tough workouts with Pádraig which he very much enjoys. They have been to An Saol in Dublin for a few days two years ago and have inspired some of our work. For example, the Swedish ladder in An Saol, or the rack, were both ideas we picked up in Torrelavega from Marcos and Laura.

This year, they said they’d walk with Pádraig and started laughing when they saw the reaction in my face.

On the last day, they kept their promise. What I thought would be a few steps in the therapy room, ended up in a walk down the corridor.

They are so creative and always look for possibilities where others might see limitations.

Joy

Squid, pulpo. Fish soup. Fried anchovies. Black rice, arroz negro. Torrijas, bread soaked in milk, dipped in egg, fried, and then coated with sugar, cinnamon, or honey – a typical sweet Easter treat. Coffee in a bar where you get 50c change when you pay with a 2 euro coin. Spain always brings us the joy of so many different tastes, textures, smells, and sensations.

The highlight, on our last day, is lunch in a fancy restaurant in San Sebastián. Not only do we get our very own extra large wooden table, we get our own dining space, almost our separate room, but well-connected to the main restaurant.

We never met the chef, but he must be a genius. And he must have many helpers because no one person could create such a feast by himself. This occasion is something to look forward to once a year. We go for the surprisingly affordable tasting menu which they offer for what you would pay for dinner in a pretty average Dublin restaurant.

When I spent my first year in Spain, many moons ago, I became a bit of a fan of Antonio Machado and Joan Manuel Serrat who put some of Machado’s poems to music.

One poem, central part of one of Serrat’s songs, Cantares, especially, has acquired a new meaning since Pádraig’s accident.

Caminante, son tus huellas 
el camino y nada más; 
caminante, no hay camino, 
se hace camino al andar. 

Al andar se hace camino 
y al volver la vista atrás 
se ve la senda que nunca 
se ha de volver a pisar. 

Caminante no hay camino 
sino estelas en la mar. 

Antonio Machado: «Poema XXIX», en Proverbios y Cantares

In English, it means something like this:

Wayfarer, your footsteps
are the path, and nothing more;
wayfarer, there is no path—
the path is made by walking.

By walking, you make the path,
and when you turn to look behind,
you see the trail that never
will be walked again.

Wayfarer, there is no path,
only traces upon the sea.

We’ll keep walking. Travelling. Working out. Enjoying as many new experiences and tastes as possible.

You can never cross the ocean unless you have the courage to lose sight of the shore.
Christopher Columbus

Have you ever been out of your depth? Thrown into the deep end? Felt scared, frightened, terrified? With absolutely no control over what was happening? Powerless and totally dependent on others?

I was. Completely helpless and terrifyingly vulnerable. And so was Pádraig.

Everybody faced with a devastating brain injury will almost certainly have had the same experience.

Our only point of reference were the professionals. The neurosurgeons. The ICU nurses. The rehabilitation specialists. They were to lead us out of this horrific situation we found ourselves in when our lives changed beyond recognition. Within a split second. Without preparation.

We lost sight of the shore and started navigating uncharted waters in search of land.

Experienced sailors say that being at sea is one of the most genuine and uncompromising environments one can experience. It poses a direct challenge to the very core of our being. If the sails are set wrong or if the equipment needed is not ready, the sea exposes these shortcomings without mercy. They say that the sea rigorously tests one’s determination, bravery, and character.

This weekend, we are on our annual 32-hour sea trip from Rosslare to Bilbao. When facing the depth of the Bay of Biscay with its mountain-high waves, we are going to be safe. We trust the captain, the crew, and their equipment.

Those who face the consequences of a severe brain injury need to know that they can trust the health system. That that system will never write them off or leave them behind. That the equipment is ready, the crew is there, and the sails are set in the right way. That all are ready to provide support and guidance through the storm, the mountain-high waves.

This is what Pádraig inspires us to do. Every second of the day. At home and at the An Saol Foundation. He is constantly testing our courage, our determination, bravery, and character.

He has all the confidence in the world in us: that we will, all of us together, cross that ocean because we have the courage, the determination, the bravery, and the character to lose sight of the shore.

What a privilege that is.

The public sphere can be conceived above all as a sphere of private people come together as a public.
Jürgen Habermas, The Structural Transformation of the Public Sphere, 1962

There is a reason for and a purpose in people doing so.

Jürgen Habermas was one of Germany’s most prominent philosophers, probably best known for describing, for the first time, what had become the public sphere in the 1960s and its role in society and in democracy. He died on 14 March 2026.

When I left school one of my ideas was to study philosophy, learning more about the Frankfurt School: Adorno, Horkheimer, Marcuse, Benjamin, Fromm – and Habermas. That never happened but, nevertheless, they were always a part of my life. His death touched me.

Habermas’ thinking is as important and contemporary as ever.

For example: scandals exist and there are always some people who are aware of them. Take young people in nursing homes. Think babies being buried in sewage tanks. Look at the unimaginable wealth and inherent power of some.

These scandals will only become real public scandals when the public becomes scandalised, when these scandals enter the public sphere. This is why Jürgen Habermas argued that a healthy democracy needed a public sphere—a space where citizens are informed and can openly discuss issues. Where they have access to information, free media, and public debate.

Habermas’ “public sphere” allows us to monitor, influence, or even control the systems that affect us. It allows us to bring our needs, rights, and lived experiences to the public, where they can influence policy, healthcare planning, and societal attitudes. We can create spaces—through advocacy, education, and engagement—where we can engage with the wider public in informed dialogue, challenge gaps in services, and push, for example, for more equitable, person-centred care. Where we look after those left behind for far too long. Those who would rather live – with their profound injuries.

We can shape political decisions by informed, critical discussion rather than by private interests, manipulation, or authority alone.

In theory.

In practice, as the recent 2026 Oxfam Report, Resisting the Rule of the Rich, has shown: just 12 billionaires own more wealth than the poorest 50% of humanity. Most of the very richest are US-based. They control over half of major media outlets and dominate major social media platforms. Ireland’s 11 billionaires are wealthier than nearly 90% of the Irish adult population together.

US Supreme Court Justice Louis Brandeis said over 100 years ago: “We must make our choice. Either we can have extreme wealth in the hands of the few, or we can have democracy. We cannot have both.”

He had a point.

In other news –

We went out yesterday and were stunned by the beauty of nature. Springtime has truly arrived.

However, there was a moment when we urgently had to call someone – but weren’t sure of who that had to be.

If a wheel fell off from your car, you’d ring the AA or your garage. There would be a tow truck coming in no time and your mechanic would take care of it.

But what if the same happened with your wheelchair?

There is no Wheelchair AA – nobody you can call for immediate help. The last time Pádraig’s wheelchair broke, he was told by his Community Occupational Therapist that he would have to stay in bed until a replacement chair had been sourced – which could (and did) take a couple of months. In the end, ironically, it was our car mechanic who fixed the problem. It took him a few minutes and the chair was back in action. (Clinically, that was not the correct solution and unsafe, we were told.)

This time, the breakdown wasn’t as dramatic and I managed to fix the problem myself. – Though I was thanking our stars that this had not happened on a walk in the woods or on they way onto a ferry or a plane.

It makes you wonder, why cars get fixed almost immediately, and why fixing wheelchairs takes months.

Last week’s St Patrick’s Day Parade in Dublin was spectacular. It was sunny, the floats were outstanding, and the atmosphere was electric. We watched it all on the TV after we had returned from our St Patrick’s Day trip to lovely Leitrim, to Cloone to be exact. There, we had supported the first ever parade. Imagine what a great day that was for the village.

There was an ice cream van, lots of old “vintage” cars and tractors. Several trucks from the local hauling business. Members of the local pony club. And some agricultural floats, protesting against the Mercosur deal.

It was raining. It was windy. It was cold.

It was a fantastic day we will never forget.

As Habermas said: The public sphere can be conceived above all as a sphere of private people come together as a public.

And it serves so many different purposes.

There can be debate. Reflection. Campaigning. Support. Beauty. And tons of fun.

We need a little of each. All coming together in community.

First say to yourself what would you be; and then do what you have to do.
Epictetus

You must have asked yourself at times: What if…?

As all other parents in An Saol, I have asked this question myself a thousand times: What if I cannot look after Pádraig anymore? What if something happened to me? Over the years, it became clearer that the question might not even be “what if?” but “what when? When I’ll find it hard to walk myself? When I won’t be able to lift myself up out of a chair?

Epictetus got it right, 2 1/2 thousand years ago. As a slave and being impaired with a lame leg, he became known for his Stoic endurance. Had he just drifted through life he would have died soon. Instead, he went for discipline and consistency, with clear aims for his life in mind.

Statistics suggest that Pádraig one day will, most likely, have to live his life without me. Rather than just waiting for that day to come, we need to prepare for it. This is why I am trying hard to make Teach An Saol a reality. For us and for others in a similar situation.

I still believe that our health and our political system will recognise how important Teach An Saol is for so many people. That they will act and take up our offer to set it up.

In the meantime, another way for us to prepare for that day is, occasionally, to get away for a short time. To remove ourselves from the equation.

That’s what we did this weekend.

Pádraig is at home, without us but well looked after by his family. While we are in the Vaterland checking out places we usually would not go to. So far, it worked out well for all.

We know that Pádraig has all the support he needs at home, even without us, for the weekend. A weekend that is a big exception for him and for us. We are all lucky to have each other and be able to rely on each other. We don’t take it as a given and we know that not every family is in this fortunate position. Which is why Teach An Saol and the proposed Respite Hub are so badly and so urgently needed.

Life without Pádraig is unimaginable. When we eat. When we drive. When we go for a walk. Even when we talk. He is present.

Which doesn’t come as a surprise. Because, usually, he is with us all the time. He is so much part of our life that it is unimaginable without him.

His life is meaningful & fulfilled. Without him, An Saol would not exist. Our lives and, especially that of other people affected by a severe brain injury, would be so much bleaker.

Pádraig shares his strength, hope, and humanity. And I need to make sure he can continue doing this. The day I can’t, others will be ready.