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.

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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.

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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.

When life itself seems lunatic, who knows where madness lies? Perhaps to be too practical is madness. To surrender dreams — this may be madness. Too much sanity may be madness — and maddest of all: to see life as it is, and not as it should be!
Don Quijote de La Mancha (Miguel de Cervantes)

“Somewhere in la Mancha, in a place whose name I do not care to remember, a gentleman lived not long ago, one of those who has a lance and ancient shield on a shelf and keeps a skinny nag and a greyhound for racing.”

He decided to go out and fight for life as it should be, not as it is. He was totally committed. The world thought he was mad. But when live itself seems lunatic, who knows where madness lies?

We are at sea. Somewhere between Ireland, France, and Spain, in a place whose name I do not care to remember. Heading for Bilbao where we will arrive in the morning at around 6am. We will then drive to Santander, stay there for a few nights, move on to San Sebastián looking over one of the most beautiful coves in the world, La Concha, and enjoying the most exciting cuisine to be found anywhere.

Heading towards Spain made me think of what is considered to be the first novel ever to be written in modern times. Miguel de Cervantes wrote his more than 1,000 pages long portrait of Don Quijote over 400 years ago. About the man who fought against the windmills. The man for whom Liberty is one of the most precious gifts which heaven has bestowed on man; with it we cannot compare the treasures which the earth contains or the sea conceals; for liberty, as for honour, we can and ought to risk our lives; and, on for the other hand, captivity is the greatest evil that can befall man.

For Don Quijote, only imagining great things wasn’t enough. He was convinced one had to commit to them. He believed in the purity of his goals, irrespective of their disastrous consequences. To him, commitment is an absolute necessity.

Pádraig is free. His has found liberty, free from the constraints society and the health system wanted to impose on him. He travels, on a ferry, to Spain where his senses will be tested by the most beautiful smells, views, and tastes one could imagine.

He will not be held captive by restrictive risk assessments and carefully planned health and safety reviews, who even see the footpath outside his house as a threat (honest to God).

To surrender dreams — this may be madness.

He is fully committed to live his life as it should be.

F.E.A.R. has two meanings – Forget Everything And Run or Face Everything And Rise.

The choice is yours.

Once upon a time, there were certainties: the world was flat, the pope was always right, Elvis was alive, the Americans had landed on the moon, the Government cared for its citizens, the Germans were organised, and the Irish white and catholic.

Today, the world is in chaos.

Women are flying into space in a mad-man’s rocket; the world’s fixer creates nothing but mayhem; people have never heard of the pope never mind listened to him; Elvis is dead, and Paul McCartney died in 1966 being secretly replaced by a look-alike; the Irish drink dirty chai lattes instead of tea, and eat falafels instead of potatoes.

And it gets worse: at Dublin airport recently, a group of Germans were complaining to the Irish check-in crew because the crew insisted in ‘procedures’: boarding by assigned group in the corresponding lane only, large bags allowed only if paid for, and the like. You know the drill. Except the ‘organised’ Germans. They created turmoil. No wonder their economy is in bits.

There is one beacon of light: Pádraig is on top of the world.. Healthy, strong, full of life, love, energy, and fun. Last week, together with his friends, he continued to work on his movie project with a visit to Raidio Na Life, the Irish language station where he worked for some time. Apparently, they had the time of their lives. He never stopped laughing, smiling, being so incredibly happy.

The best part: his parents weren’t there. I don’t even have one picture of that visit. No details were leaked. This was his and his friends business. Not mine or ours.

Just like in the old days.

It’s reassuring to know that even in this crazy world of uncertainty and upheaval some things haven’t changed. At least some certainties remain and can be relied on.

Not sure how the world will end up.

But there’s no doubt in my mind that, as long as it doesn’t implode altogether, Pádraig will have a great time, sharing his creativity, love, and sense of humour with his friends and loved ones.

In the meantime, we’ll just have to mind our own business, getting on with all the uncertainties, cruelties, and violence, with dysfunctional systems, self-centred politicians, and our dirty chai latte-drinking, falafel-eating fellow citizens.

After one look at this planet any visitor from outer space would say ‘I want to see the manager’.
William S. Burroughs

Would you agree? If you were that visitor from outer space, would you ask to see the manager because of the mess you had encountered when you arrived at the blue planet?

And who would that manager be?

Wouldn’t it be nice if there was a sensible person responsible for running the place, one you could complain to about the chaos and destruction – or even the ignorance, the looking-to-the-other-side, the knowing-but-choosing-to-ignore-it, the stringing-it-out-until-it goes-away, and the blaming-the-system-but-never-myself attitude?

We got lots of praise for our work. We know what we need to too. We have demonstrated that we deliver. We have incredible support in many different communities.

Nevertheless, so far neither a manager, nor a minister, nor the Taoiseach himself have had enough interest to cut through the red tape to allow us to do what everybody agrees needs to be done.

When trying to see the manager it seems to me that they have left the building. A bit like Elvis. Or the von Trapp family. They’re gone. So Long. Farewell. Auf Wiedersehen. Good-Bye.

Teach An Saol, the House of Live, our National Centre, has to be built. Not in 20 years but in 2025. With Satellite Centres around the country, providing services for those who up to now have been left behind, with many of them, inappropriately, currently placed in nursing homes.

What will it take to get the manager back to do their job?

We have heard promises after promises. But – at some stage the question inevitably arises: Does the word of a senior civil servant, or of a politician, of a minister, of a Taoiseach, count for anything? Or do they just tell you what you want to hear?

Are they, in their heads, singing the “Ten Years After” song:

I’d love to change the world
But I don’t know what to do
So I’ll leave it up to you

While countless committees meet to provide advice and to inform, God alone knows who; while public servants are continously designing new processes with corresponding forms to be filled in and to be duly submitted for review and subsequent signature by the relevant representatives of the authorities in question following thorough consideration by the above mentioned committees, while there is an endless cycle of meetings, committees, strategies, plans, and papers — we ourselves take action because we need to.

Pádraig is continuing to work hard with Kay Coombes and with the brilliant support from the extraordinary staff at the An Saol Foundation Centre in Santry. One of the current goals is to support the strengthening of is upper body, including his neck – sitting in an ordinary chair, not the wheelchair, with plenty of support from the front.

We continue celebrating life and living.

No better day for that than St Patrick’s Day. No better place for it than lovely Leitrim.

I have an ‘Alien Passport’ from my early days in Ireland. I still want to see the manager.

Someone needs to take charge. Some time soon.

Lá Fhéile Pádraig sona duit.

Water always goes where it wants to go, and nothing, in the end, can stand against it. Water is patient. Dripping water wears away a stone.
Margaret Atwood

It took a bit of an effort but I got up early yesterday morning and went for a walk when the sun was about to rise. It was that time of the morning when it is no longer night but not day either. When the birds start singing but most people are still in bed.

It had rained during the night and the ground was still wet. There was a smell of damp in the air. Because it was not as cold as it used to be earlier in the week. I could see the first buds on the cherry blossoms. Spring is no longer just in the air.

There is a walk I take down to Griffith Park, across a little foot bridge, through one of the pedestrian side gates that is newer locked, and along the Tolka River.

It might sound cheesy to say this, but I felt happy. Happy to be able to walk, breathe, hear the sound of the water, hear the birds singing, see nature coming back from winter into spring time, even the man with his little plastic trolley restocking supplies in the Tram Café beside the playground.

Whatever did it, all the misery of the world, all the troubles in my life, all the injustice, frustrations, and even that feeling of utter helplessness – it all disappeared.

For no reason, I was the happiest man in the world.

I was so happy that I promised myself to remember this moment, because I knew it wouldn’t last forever.

I wonder whether this is how Pádraig feels like sometimes? Really happy to be around people? Real happy to go to see his favourite musicians? Really happy to go for walks, go shopping, go to meet up with friends? Really happy to stand, stretch, cycle the MOTOmed? Really happy to have this massive impact on disability rights, on the incredible change he is inspiring on the health system? Really happy to be a game changer and a trailblazer?

He has been practicing a new communications device he has on loan from SMARTBOX to try it out – with a view to buy it. He is using it with a G-Click which is “a special switch that uses a minature solid state gyroscope. It offers zero-force switch operation by detecting tiny amounts of tilt, and auto compensates for any accidental position changes from the user”. You get the gist. Graham Law, an engineer and the owner of Celtic Magic, used to build rockets. Now he builds some of the most sophisticated access devices in the world from his lab in the East Midlands of England.

Both Pádraig and Graham are like that water that will always go where it wants to go, and nothing, nothing in the world can stop it.

We must set sail. Sail, not tie at anchor. Sail, not drift, as Franklin D. Roosevelt said.

Which is when we will discover the most amazing things life and the world have to offer.

The first method for estimating the intelligence of a ruler is to look at the men he has around him.
Niccolò Machiavelli, The Prince

When I travelled in Google-Land last week, I ‚met‘ Emma (13) who had been treated at Alder Hey for cerebral palsy. Alder Hey Children’s NHS Foundation Trust is one of Europe’s biggest and busiest children’s hospitals, where they treat everything from common illnesses to highly complex and specialist conditions.

In these pictures from April 2022, she is holding one of the very first copies of Hospi-Tales, a book put together by Graphic Medicine team at Comics Youth who had spent a year visiting the wards with the aim of raising the confidence and voices of young people with lived experiences of acute, chronic or terminal physical and mental ill health and help them to tell their stories through the medium of comics.

The first thought that crossed my mind was: It took those guys 10 more years than it had taken me to come up with such a brilliant title! I must get it and check it out.

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Pádraig’s week was busy as always and slightly more exciting as the average week.

He had some visitors from UCD and Thomas Jefferson University who checked the music tech out with him again. He hadn’t had a session with the guys for some time. It was brilliant to see how Pádraig engaged using the bespoke access tool with the music, playing bells, drums, and the pipes – all via a synthesiser. He also took the opportunity to have another go at the Xbox in An Saol’s Gaming Room.

On Saturday morning, we all went to the Lighthouse Cinema to watch The Blue Road about Edna O’Brien’s life and times. The movie was produced by one of his friends, with Barbara Broccoli of James Bond fame being one of the executive producers.

It is a brilliant movie with fantastic original footage and many many incredibly interesting facts, opinions and views about Ireland’s most famous female writer. I learnt a lot of what would have been my formative years, had I been born in Ireland. And they weren’t pretty.

In the evening, Padraig went with one of his best friends to see Dara Ó Briain in Vicar Street. It was three years ago that the two of them went to a concert together in The Point, or the 3Arena as it is now known, to see Girls Aloud. That was the very first time that Pádraig had gone out with someone, totally on his own.

This was a milestone.

We were unsure whether it would all work out and were thinking ‘what if…’, not really being sure what that ‘if’ was. In the end there was none and both had a cracker of a night with a band that was pure fun. The night was the first of many in which Pádraig went out without us, without a carer – but with a friend.

We hadn’t bought tickets for last night’s gig but helped the two of them to get the wheelchair into the venue. When we were leaving, they guys at the door asked us if we would like to stay on for the show – “totally up to you”?

‘Sure, why not’, we said – and got two tickets up on the balcony, in the middle of the front row, about the same seats Michael D. had for the Irish Folk Awards earlier in the week. Upfront, in the distance, we could make out the two watching and listening Dara.

It was brilliant to be amongst people, seeing them, hearing them, feeling them, smelling them, shuffling with them up and down the narrow stairs and along the equally narrow corridors. Dipping our toes in something normal, something you’d do on a Saturday night.

There was no shortage of kind, generous, and caring people around. Pádraig would not have gone out without this brilliant Christmas present from his friend. We would have wandered the streets, waiting to pick the two up at the end of the concert, had it not been for the kindness of the lads in Vicar Street.

It was refreshing to experience an evening that was so different, because of kind people, to what seems to be going on in the rest of the world.

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I can’t believe that I am quoting Machiavelli again. But these are changing times. So here is another quote by the famous man, just for a thought:

The first method for estimating the intelligence of a ruler is to look at the men he has around him. (Machiavelli)

“Hope is not about believing things will always get better, but about finding meaning no matter what happens.”
Byung-Chul Han

Last week was another step forward in Pádraig’s journey, marked by quiet progress, meaningful connections, and a reminder of the power of music.

A Night of Music at Iona Church

On Thursday, Pádraig attended a string quartet performance of Beatles music in Iona Church. The setting was intimate, the sound rich and layered, bringing a new depth to familiar melodies. The music wasn’t just something to listen to—it was something to experience, to feel. Watching him take it in, it was clear that moments like these matter, even if we can’t fully measure their impact.

Progress in the Everyday

Beyond the concert, the past week was filled with small but significant moments—responses during therapy, interactions that felt clearer, and a growing sense of engagement. These aren’t breakthroughs in the traditional sense, but as Byung-Chul Han suggests, hope isn’t always about radical change. It’s about recognizing meaning in what is, rather than waiting for what might be.

Moving Forward

There’s no roadmap for this kind of progress, no fixed milestones to measure against. But each week, in ways both seen and unseen, there is movement. And sometimes, just being present—whether at a concert, in therapy, or in everyday life—is enough.

Fake and Real

I hope you noticed that up to here there isn’t a word I wrote. Nor a picture I took.

I decided to give Chatgpt another go. And this is what it produced. Pretty scary stuff.

These two pictures of last week’s String Quartet Beatles Concert by Candlelight in Iona are real.

As was the magic of the evening.

Smartbox sent over a trial device for Pádraig to work with. It is, basically, a fancy tablet, with a stand, a rucksack, keyboard and mouse, running software that helps with communication.

We’ll have it for about three weeks and will do our best to use it every day as often as possible. And then decide whether to buy it.

Upwards and onwards. And no more fake stuff.

But always finding meaning no matter what happens.