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.

It is not that I am mad, it is only that my head is different from yours.
Diogenes of Sinope

You might have heard the story of Diogenes of Sinope. The famous philosopher from the 4th century B.C. walked through Athens in broad daylight carrying a lantern. When people asked what he was doing, he replied: “I am looking for an honest man.”

I was reminded of this story when I listened (not read:) to the first chapters of a book by Manfred Lütz, the former Director of the Mental Hospital of Cologne, called “Crazy – we’re treating the wrong people!”, or: Irre – wir behandeln die Falschen. He explains and questions our understanding of what it is to be crazy and what it is to be normal. He talks about the insanely normal ones, and the normal insane ones. The normopathen normopaths – not sure whether I got this translation right.

It’s fascinating. And amusing. I had a good laugh.

Last week, I believe, I met some honest people.

There was a man from an Approved Housing Body (AHB), a charity that has built thousands of homes for those who cannot pay market rents. While the HSE is happily planning to take over land from us earmarked for phase 2 of our Teach An Saol project which is all about housing – they are, at the same time, saying very clearly that they are not in the business of building housing and that they have no plans for phase 2; this man said it was a no-brainer for his AHB to build housing on this piece of land. Accessible and supported housing.

Then, Dublin’s Lord Mayor came to visit. He spent almost all of his time with us talking to our clients and to our staff, trying to understand what our work is all about. The slightly cynical view of this could be that he might have known that Pádraig lives in his constituency and is an ardent voter. But I also felt some genuine interest and concern that those who have been left behind for far too long should get the support they so urgently need. Finally. And that he was going to do whatever is in his powers to make that happen.

Diogenes wasn’t ashamed or fearful to annoy or to say things that caused consternation. In fact, he saw it as his duty to make people aware of the wrongs in the world, and their own wrongs. Another one of his famous sayings is: “In a rich man’s house there is no place to spit but his face.”

These days, we don’t spit anymore. Not on the street or in bars. Less into peoples faces.

But there are occasions when we should put political correctness aside for a moment and say things the way they are.

To be honest.

It’s our duty. We owe that to our sons and daughters, and to society.

The words you’ve bandied are sufficient;
’Tis deeds that I prefer to see:
In compliments you’re both proficient,
But might, the while, more useful be.
Johann Wolfgang von Goethe, Faust, Prelude

Big projects are taking far too long to deliver, said Simon Harris when asked about the delivery of important healthcare projects,, such as Teach An Saol. We have to cut through the red tape.

The words you’ve bandied are sufficient;
’Tis deeds that I prefer to see:

Simon Harris might but, most likely, did not have Goethe’s Faust in mind when he stated in his own words what Germany’s most famous writer and poet had written about 200 years ago.

When asked by Deputy Paul McAuliffe in the Irish Parliament about the delivery of projects in the context of the National Development Plan, among them the An Saol Foundation’s Teach An Saol project for Life and Living with a severe Acquired Brain Injury (sABI), the Tánaiste stated that “Big projects are taking far too long to deliver” because of excessive bureaucracy.

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During the week, I became a certified TWC Professional, having attended a course in the Wayfinding Centre in Glasnevin, apparently the only centre in the world, where you can practice how to use public transport.

The Centre is outstanding. Not only do they have buses, a taxi, a tram, and even an aeroplane on site. They also have a huge board allowing visitors to tell everybody about their problems when using public transport, their proposed solutions, and their wishes for the future.

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Pádraig and I continue to attend the National Hyperbaric Centre, ideally twice a week. Last week, he managed to hold his head up high with his mask without any support, including the headband. It might sound like a small thing, but it is massive. His head control is improving all the time. So is his alertness and ability to participate in physical exercise, conversations, and social contacts.

Inclusion, participation, integration – all need adequate space to facilitate them. It’s more than a ramp that is needed.

And it is time to stop the talking and the shoulder clapping.

It’s time to act. To cut through the red tape.

It always seems impossible until it’s done.
Nelson Mandela

I nearly missed that ring on the door, early yesterday morning.

When I went up to open it, there was a nice man with a big bunch of flowers smiling at me and asking: “Pádraig?”

“Unfortunately, not”, I answered.

All the way from Cork, Pádraig received flowers accompanied by a very nice card with Valentine’s Day wishes.

He was delighted.

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The lyrics are, as always, full of reflection and the importance of human connection.

f I could have my time again
I’d try not to forget how to swim
Make my way to the ocean deep
My own company I’d keep
I wouldn’t know what day it was
Or if it was raining
But that’s OK because
It’s all a changing

(My Bones a Scaffold, Pilgrims)

The concert, in one of the most intimate settings, was one of the best, most relaxed ones we’ve ever been to. Navan is not a hotspot for gigs, and in Dublin the event would have been sold out immediately in a venue four times the size of the Solstice Arts Centre. Last night, the place was half empty but full of warmth, love, and intimacy. Paul and Brian sang a mixture of new songs and the old reliable Bell X1 ones. It was just stunning.

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More than 2 years ago, I wrote “Will Taoiseach Simon Harris announce Teach An Saol in 2024” on teachansaol.ie.

Last week, on 12 February 2026, Simon Harris, now Tánaiste and Minister for Finance, put it on the record of the Dáil, the Irish Parliament, that he will visit the An Saol Foundation. He said that he “feels very passionate” about the Teach An Saol project. “This is a chance to transform lives”, he stated and added: “I am committed to working with you to get it over the line.”

He also said that we have to cut through the red tape and the bureaucracy, the gates, the stages, and the bottlenecks, lalalalalala….. Because big projects, like Teach An Saol, are taking far too long

Thank you to Councillor Gayle Ralph, Senators Anne Rabbitte, Mary Fitzpatrick and Aubrey McCarthy, Deputies Paul McAuliffe, Cian O’Callaghan, Marie Sherlock, and Dessie Ellis who all have expressed their support and asked the Government and the HSE about their commitment to the Teach An Saol project over the past years.

It always seems impossible until it’s done.

Just kicking down the cobblestones
Simon and Garfunkel

Simon and Garfunkel’s concert in Central Park is one of those that made history. Hundreds of thousands of people saw it. So it’s not a miracle that even I know someone who did.

One of my favourite songs from it is New York, Another one is Feelin’ Groovy.

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It was a week of feelin’ groovy. When you could forget about all the bad stuff, all the bad people, all the madness.

Starting off with a small but brilliant concert by one of Pädraig’s friend, perhaps the only full-time artist amongst them. With a friend she has formed the group Big Cosmic Telephone. They played in a cool venue, Ardgillan Castle, just north of Dublin. It was an absolutely beautiful morning of music in a gorgeous venue. Not many music groups can say of themselves that they ever played in a real castle.

We got the morning last, just kicking down the cobblestones. Looking for fun and felt groovy.

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A few days later, we went to the Barn of Music in Rathcoole, County Wicklow, a recording venue run by Kevin. Like Swiss clockwork, very solid, warm, and homely. Kevin turned out to be a Swiss native.

Pádraig went there to work on film music with some of his friends.

Epic. So relaxed. Inspiring. Interesting. Fun. Friendly.

We got no serious deeds to do, no promises to keep. We made another morning last beautifully.

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Then on Friday morning, we heard people on RTÉ talking about the 50th anniversary celebrations of Hotpress Magazine that night in the 3Arena – which should have been renamed The Point for the night.

I still don’t know how we managed to get tickets that morning. But we did!

As Hotpress say:

While trends and fads come and go, the communal pull of great music and genuine creativity have always transcended genre and generation – something that Hot Press not only recognised early on, but has continued to champion for the guts of 50 remarkable years.

It was a lineup like no other. The video below just shows a few of the incredibly talented contributors to this historic night: CLANNAD, GAVIN JAMES, VAN MORRISON, CRANBERRIES & DERMOT, and the BOOMTOWN RATS.

Perhaps the most memorable contributors of the night were those who were not there in person but in spirit. Among them, of course: Phil Lynott, Rory Gallagher, Sinéad O’Connor, Shane MacGowan. But above all: Dolores O’Riordan. Especially when the Cranberries performed her songs.

Another head hangs lowly
Child is slowly taken
And the violence caused such silence
Who are we mistaken?

If you look closely, you can see Adam Clayton of U2 on the bass guitar supporting Bob playing The boys are back in town.

What a night.

Not Pádraig’s first in the Point, but, with a 1 am closing, most certainly his latest.

What a groovy week. Hip. Far out. Mind-blowing. Outta sight. Right on.

Got no deeds to do, no promises to keep
I’m dappled and drowsy and ready to sleep
Let the morningtime drop all its petals on me
Life, I love you, all is groovy

Ba da-da da-da da-da, feeling groovy.

Well my mama told me, there’ll be days like this
Van Morisson

When it’s not always raining, when there’s no one complaining. Everything falls into place like the flick of a switch.

It didn’t rain one day. There were blue skies. There was no one complaining about a thing. The world was near-perfect. We had ordered the new wheelchair, went to the workshop a few times until it was ready – everything fell into place like the flick of a switch.

When you don’t need to worry, when no one’s in a hurry, when you don’t get betrayed by that old Judas kiss.

Of course we had worried about the long journey in plain winter time. About whether the wheelchair was going to be right. There was no need for it. – The only time I felt betrayed was when dealing with people who had very different ideas, following their very own agenda, blinkers on, and didn’t seem to be prepared to listen, think of the desperate needs of others. I still felt that old kiss.

When you don’t need an answer, when you don’t meet a chancer, when all the parts of the puzzle start to look like they fit.

Miraculously, the new wheelchair fitted into the back of the car. All parts of the puzzle fitted. – The week also confirmed for me that the world is still full of chancers. Unhelpful ones, indeed, and very counter-productive, even destructive, ones.

When everyone is up front and they’re not playing tricks, when you don’t have no freeloaders out to get their kicks, when it’s nobody’s business the way that you want to live.

A lot of people are, of course, not upfront. No pleasant surprises there.

When no one steps on my dreams, when people understand what I mean, when you ring out the changes of how everything is.

People continuously not just step, they trample on your dreams and certainly don’t make an effort to understand what you meant. They actually are often out to destroy them. To a point where you can’t find sleep at night. Then Van reminded me, that better days were on the way.

Oh my mama told me there’ll be days like this.

There will be days like this. One day. When we will ring out the changes. When we will not have to worry about those who just don’t seem to get it. Or, perhaps, simply do not care enough to even try.

Happy St Bríd’s Day! Happy start of the Celtic spring!

If we‘re not at the table, we‘re on the menu
Mark Carney, Prime Minister of Canada

It’s not always straight forward to get a place at the table.

Mark Carney pointed that out during his speech at the World Economic Forum in Davos.

Pádraig had the experience when we went on our usual visit to the Arche Noah restaurant in St. Peter-Ording, at the end of a mile-long wooden bridge. It was freezing cold and the terrace of the Arche which can be reached over a ramp was not operating. To get into the inside restaurant proper, however, you have to get up 10 steps. I didn’t even bother to ask because I was sure there was no way to get Pádraig up those steps.

I should have taken on Hannah Ahrendt’s, the German philosopher’s, advice who once said: “For the things we have to learn before we can do them, we learn by doing them”.

Or just be less pre-assuming. As Pat was.

I was still admiring the most beautiful views of the vast sandbank and the North Sea with Pádraig, in the freezing cold, with the sun disappearing on the horizon, when Pat came down the 10 stairs with two waiters, and a minute later Pádraig was on his way up those ten steps. Step by step.

Then, Pádraig was at the table.

We had a great evening, by candle light, in one of the nicest surrounds north of the Kiel Canal.

Later, in the dark, we made our way back down those ten steps, each one of them, then down the ramp, and back on the mile-long walk, in the dark and cold, back to our car.

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While we are away in the Vaterland, our friendly builders made great progress building just three steps (which will support a ramp) and a brand new, full-length door to our living room. Pádraig will be able to get straight into the room, without the bother of the slow and complex lift he has been using up to now.

It was coincidence that, while they were working on those doors and steps, taking down a wall, we were away to get Pádraig’s new wheelchair in the Vaterland.

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We had three sessions with the nice Orthopädie-Mechaniker in the Sanitätshaus in the North of Germany. First, we checked whether the specially constructed seat and back supports were right and had a chance to adapt them. At the next visit, we made sure that all these adaptations worked and selected the covers.

On Friday, the chair was ready for collection. The only challenge: to fit a second wheelchair into our already pretty full car.

It was a game of Tetris game which, in the end, worked out fine. We were, just about, able to close the back door, with Pádraig, ourselves, our luggage – and the new wheelchair, inside.

We are now on our way to Dublin. On the way, we will have to unload stuff three times: one overnight on the way to Rotterdam, one on the ferry to Hull, and one on the ferry to Dublin.

For the things we have to learn before we can do them, we learn by doing them.

Stupid Cow?

In a week dominated by mad stories, you might have missed the one about Veronika, the cow.

The scientists who visited Veronika, made it clear that she was not an “Einstein”. Their explanation for Veronika’s abilities was that she was given the opportunity to learn and acquire her skills over 9 years. She is not the typical agricultural production cow, but, rather, a pet cow, given time and attention to live a good life.

Amazing.

Made me think of the doctors who look at someone, a person, with a devastating brain injury and decide within a few minutes that this person’s life is not worth living. Of clinicians who decide that after three, or six, or nine months, if they cannot observe any “progress” (whatever that is), their time and efforts are wasted and should be re-directed towards patients who show a measurable (however they measure), observable (however they observe), return on their investment (however they define “investment”).

Amazing.

If given time and attention, amazing things can happen.

There are no stupid cows.

There are no hopeless cases.

Unless we have a different agenda. Or we decide it’s not worth the effort.

If we‘re not at the table, we‘re on the menu.

For the things we have to learn before we can do them, we learn by doing them.

Teamwork makes the dream work
(translation, anon.)

Last week, some of the team that makes the dream work met for an early dinner

They brought food and drink for a good evening in great company. We were invited to join. Some of the stories swapped I had never heard. They made me feel old. The stories might even have made some of Pádraig’s friends feel old (though they don’t know what old feels like.)

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This weekend, we are on the way to Germany. Driving to Flensburg to get a brand new wheelchair and get it fitted for Pádraig. It will take about a week. Driving back to Dublin the coming weekend.

There was no way the HSE would supply an appropriate non-standard chair for someone who is 6’7″, active and regularly out and about. A therapist and now also a good friend who is so experienced that she worked with the Bobath’s and supported the Therapy Centre in Burgau in its early days, recommended a Scandinavian-made chair which is now ready for collection and adaptation in a workshop near Flensburg.

Pádraig’s friends and neighbours organised fundraisers, coffee mornings, and cake sales; some made a direct donation, some decided to contribute what they would have normally spent on their family Christmas presents. In the end it all made it possible for us to buy this wheelchair.

It irks me to think that this practically amounted to a fundraiser for the HSE who should have paid for an appropriate wheelchair, and that we started to look into this when his HSE supplied chair broke; when his HSE OT suggested to him to stay in bed for a few weeks, potentially months, until a replacement chair would be sourced.

But I feel we are travelling on eagles’ wings to Germany. On the wings of those who made it all possible. Strong, determined, supportive, responsible, decent people who are about everything our health system too often lacks.

A system that says there is no money to finance the new services proposed and prepared by An Saol to keep young people out of nursing homes; when they have no problem finding the money to ‘place’ teenagers in nursing homes.

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On Monday, the big news was that Dublin City Council had granted planning permission for Teach An Saol.

This is a massive milestone.

It is the result of the hard work and dedication of a large number of Ireland’s leading companies who first submitted the application in December ’24, and then submitted the answers to a request for further information by DCC in December ’25, on behalf of the An Saol Foundation. All work by these companies was carried out pro bono for the An Saol Foundation.

We could start the tender process now if we had the go ahead from the HSE.

As you know, the current proposal from the HSE is to take over the site, the design, the planning permission, and the building, to call it Teach na Cumas, and offer a yet unspecified lease agreement to An Saol for a portion of the building.

Whereas our proposal is to get our building work finished based on our plans for Teach An Saol.

Four years into the Teach An Saol project, we now need to give it the last big push to bring the project over the line. We worked for Teach An Saol. Not for Teach na Cumas. Ní neart go cur le chéile.

The excuse that no funding is available to keep young people out of nursing homes is bizarre, when millions are available and spent to put them into nursing homes.

And these children that you spit on as they try to change their worlds are immune to your consultations. They’re quite aware of what they’re going through.
David Bowie, Changes

10 years ago yesterday, David Bowie died. It literally feels like yesterday, not like 10 years ago.

A little after his death, a clever writer came up with a headline commenting on the ‘vandals’ who ch ch changed the name of the Austin street named after the Alamo fighter James Bowie to “David Bowie Street”.

I never really got Bowie. He probably never fully understood himself.

I liked that he was different. That he wanted to be different. And was not afraid of it.

I don’t know where I’m going from here, but I promise it won’t be boring, he said of himself. And, If it works, it’s out of date.

I once listened to a discussion on the radio where one of the participants insisted that performers were always at their best when they were authentic, just being themselves.

To which the other participant answered that he wasn’t too sure about that, because Bowie was at his best when he was a starman.

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There were a few other anniversaries last week. On Tuesday, 7 years ago, things could have gone very wrong for myself. On Wednesday, 11 years ago, a courageous young doctor took out Pádraig’s tracheostomy and allowed him and us to stay in their hospital rather than us having to return to the rehab hospital where they had made it very clear to us that if if the tracheostomy was removed, Pádraig would most likely either respirate, get pneumonia, and die – or choke and die.

Last week, I had a long conversation with the mother of a 21 year-old woman who is currently in hospital in the U.K. having suffered a devastating brain injury. What she shared about the deterministic nihilism of the doctors in relation to her daughter’s right to her life was terrifying. Much of what we had been told in the early days. And what has been happening to so many other families we have been talking to. These conversations, if you can call them that, have to be taken out of hospitals and be made public.

While the doctors and nurses seem to think that their attitude is correct and works – it certainly, and at a minimum, is outdated and unethical. What amounts effectively to involuntary, passive or active, euthanasia to save ‘valuable resources’ or is done in the ‘best interest’ of the person concerned cannot be justified. Ever. Under no circumstances.

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Pádraig got new socks (from ‘In Bruge’) from a friend. He continues to play the tin whistle (with a little help from a musician). He is actively standing nearly every day (proudly displaying his t-shirt with the quote by one of the last inhabitants of the Great Blasket Island). And above all, he keeps smiling.

There’s a starman waiting in the sky
He’d like to come and meet us
But he thinks he’d blow our minds

Next weekend, Pádraig will collect his new wheelchair, just north of Hamburg, if all goes according to plan. It’ll be a bit of journey but hopefully worth it.

So many people, family and friends, have helped to make this happen, with invaluable advice and with offers of incredibly generous financial support. None of it coming from the health system. Systems have their own dynamic and interests. Often very different ones from those of ours. Of Individuals. Who need help and support. Of system and nihilism deniers. Lighthouses. Trailblazers. Who inspire us, who blow our minds, each and every minute of each and every day with their resilience, determination, their love of life, and their happiness.

Ch ch ch changes, turn and face the strain. Oh, look out you rock ‘n rollers. Time may change me.
But you can’t trace time. Strange fascination, fascinating me. Ah changes are taking the pace I’m going through. Oh, look out you rock ‘n rollers.