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.

---

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.

---

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.

It is not because of setbacks that some do not reach the finishing line, but because of a lack of willpower and motivation.
Anon.

I got there. Though I wasn’t sure up until the previous day whether I should try it at all.

Once I had collected my starting number and the t-shirt, these doubts had to be put aside.

On the day, Santa was not the man with the long white beard but a woman in her thirties who was encouraged by her friends to hurry up because they wanted to go for a drink. There were more funny signs along the route. As I was running towards the finishing line from the back, there were also tons of empty plastic cups, hundreds of squeezed empty power gels, and dozens of banana skins on the way back to the big white television tower.

I can’t really say it was fun. It was hot. There was not a cloud to be seen on Hamburg’s blue sky. Although this was a standard marathon, I was convinced that it was a particularly long one.

When I finally had passed the finish line and a nice staff member positioned the medal around my neck, I asked them if I had won? The answer was, “everybody who makes it over the finish line is a winner!”

---

Yesterday morning, we went to the new Farmers’a Market in Ballymun, together with a few families from the An Saol Foundation Centre.

The brother and sister of one of the clients of the Centre were providing the entertainment, together with the fantastic Ballymun choir that had also performed at last year’s An Saol Foundation Adventfest.

It was a fantastic day out. The weather was good, the company brilliant, and the food outstanding.

The life our friends are living and the way they live it, is the opposite to what the health system had in store for them.

Their focus is firmly on the finish line.

They are going to make it on their way to a meaningful life in the company of their families and friends.

Like everybody else, they will encounter some setbacks on the way.

But unlike others, they have the willpower and the motivation to live their lives to the fullest.

They are Easter. We are Easter. We are full of hope. Full of Life. And we are on a mission to show the world that we are here to stay.

The ocean is everything I want to be. Beautiful, mysterious, wild, and free.
Anon.

This day last week, we were on the Brittany ferry “Salamanca” on the way from Bilbao back to Rosslare, following a brilliant 9-day trip to the North of Spain.

On the second day of that trip, Pádraig’s sister was in her cabin when someone knocked on her door. She thought it was one of us and was quite surprised when it was one of the crew asking her to meet the purser at 10am at the information desk, as the captain had invited us to visit him on the bridge.

As a lot of people with kids, we had had the opportunity to have a quick peep into the cockpit of a plane, many moons ago.

This visit was a whole different ball game.

This was like I imagine the command centre of a space ship. It was magnificent.

Perhaps not surprisingly, there was nobody at the helm – which in any case looked closer to a fancy steering wheel of a car than the big wheel of a ship

The mostly French crew were incredibly nice to us and took a lot of time to explain how they navigate the ship, how they dock it, how they chart the course on their computerised systems. We noticed a whole shelf of different flags with a poster explaining their use – but we were told that these weren’t really used anymore and were kept there mostly – because they had always been there on the bridge of big ships.

When we were back home, we saw a short Instagram reel about Pádraig’s visit to the great Neuro Rehab Centre Élize in Torrelavega which our Spanish friends had put up. We are so grateful to them for their fantastic support and dedication.

View this post on Instagram

A post shared by Élize Neurorrehabilitación (@elize_neurorrehabilitacion)

Last Friday, we went to see The Book of Mormons with Pádraig and one of his best friends. It is the most politically incorrect musical you could imagine. To a point where you think, “how are they getting away with it?”

The Bord Gáis Theatre was much bigger than we had remembered. It has a capacity of more than 2,100. There is no intimate theatre experience here. But the packed theatre provided a superb platform for this outrageous show. We were up on the third floor, a little removed from the action. Pádraig and his friend luckily had premium seats, just a few rows from where it all happened.

We went to a matinee and it was a really great afternoon out, with tears running down our eyes when we just couldn’t stop laughing. It is hard to believe that such a potentially offensive show is an absolute hit in our so politically correct world.

---

It has always been my dream to sail around the world. A dream, for which Pádraig as a young kid had developed a plan to realise. Like the ocean, he is beautiful, mysterious, wild, and free.

Each journey, especially one involving sea crossings, reminds me of that – if I needed a reminder.

Perhaps, one day, we’ll find a way to make his and my dream come true?

In the meantime, we carry on riding the waves of life. At times deep down. At times right up on the crest. What an adventure.

Talk sense to a fool and he calls you foolish.
Euripides

When I turned the corner yesterday morning coming out of the hotel, the rain hit me vertically into the face. It was dark, very windy, and very wet. For one second, I was going to turn around. But I continued and gave it a try. That run along the “Concha” in San Sebastián turned out to be the nicest run I can remember.

There was the roaring sea on one side. Nobody was overturning me because I was the only runner on the promenade. And after a minute, I didn’t feel the cold and the rain anymore. It was heaven. At my own pace.

Two hours later, I had done the distance I wanted to do in preparation for next week’s marathon in Hamburg. To get a bit of reassurance that I would be able to finish it.

None of what Pádraig did in the past week he was ever supposed to do ever again. Like I was not supposed to run yesterday morning (or attempt another marathon next week :).

But if you take on the wind and the rain, into your face. right on, you can have the most beautiful experiences. A real Easter experience. Not just of hope but of a beautiful new life.

At the beginning of the week, we started with a few days in Santander, from where we went each day half an hour up to Torrelavega to see our friends Laura and Marcos. They run an amazing Neuro Rehab Clinic there and are some of the best clinicians around.

After a couple of days, we moved on to San Sebastián. We stayed in a nice hotel, directly on one of the world’s most beautiful beaches, La Concha.

No better place in Spain than San Sebastián if you want to experience food beyond sustenance. Food that goes way beyond nutrition. Food that assaults your senses. Food you don’t usually smell or taste in your everyday life.

Food that melts on your tongue. Food that explodes in your mouth. Food that excites your taste buds. Food that is sweet. Sour. Hot. Sweet. Soft. Crispy. Whatever you like it to be. In one place, we started with five (!) different tastes of olive oil, from soft to really strong, produced across the different regions of Spain from Navarra in the North to Andalucía in the South.

Pádraig tasted different types of squid, pulpo, his favourite dish. Chops the size of a wheel coming from an open fire pit. Black rice. Pinchos of any imaginable type. Cheese cake as you never have tasted before.

The sound of summer is coming up from the beach below. Children screaming. Someone trying to earn a few euro playing the trumpet accompanied by a karaoke machine. The waves crushing onto the beach.

The rain has stopped and the sun has come out. Easter is here.

Today, Sunday, we’ll get up really early to drive to Bilbao and get the 30-hour ferry back to Rosslare.

For a week, we have tasted life, literally, and we really, really enjoyed it. Together. We will continue to do so as long as we can. With the wind in our hair, the rain cooling our faces, and the sun burning our skin.

Gracias a la vida que nos ha dado tanto.

In the words of Manual Serrat in his song La Saeta, our Christ is not the one on the cross, but the one who walked on water, the one who left the tomb behind.

Happy Easter.