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 not 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, trample, on your dreams and certainly don’t make an effort to understand what you meant. They are often out to destroy them. To a point where you can’t find sleep at night. 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 try a little harder.

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.

Our life is frittered away by detail… simplify, simplify.
Henry David Thoreau

Eat less rubbish, sleep more, spend more time with family and friends, loose weight, exercise – my new year seems to have started where the old year did 12 months ago. Sounds familiar?

We should call these Old Year’s resolutions.

So, what are my New Year’s resolutions?

The two pictures above capture them pretty well.

Look at us. Look at Pádraig. Life is good.

It’s very simple.

No point in letting your lives be frittered away by detail.

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Pádraig would not have achieved what he did, he would not be where he is, and he would certainly not enjoy his life as he does, without the phenomenal support of his family and friends, old and new. Thank you all!

12 years ago, in Hamburg’s UKE, he nearly died a second time following his accident. There had been three operations on his lungs within just a few days. Then he got a SIRS, better known as sepsis. His life was left hanging on a thread for nearly 24 hours. Then his nurse very quietly noted that it looked like he had turned a corner.

New Year’s Eve will always bring back this memory. How he turned the corner with the dawn of the New Year.

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We are with the light that shines in the darkness, a light the darkness will never overcome.

It’s simple.

And now we welcome the new year, full of things that have never been
Rainer Maria Rilke

People get together this time of the year. They exchange what happened to them over the past twelve months. They find it difficult to believe that yet another year has gone by. So fast. They share their plans, their outlook for the coming year.

What will be different? What are our hopes and dreams? Will life be better? Will we be happier?

On Friday, Christmas started in our house with Pádraig’s annual Christmas party.

Organised by one of his friends, they came to catch up and to have a good time together. It was truly heartwarming. And the stories being shared were those of young people becoming adults.

Some could not join because they were at a wedding. One had just become a father for a second time. Another is now living permanently in Thailand. One arrived late because he had just secured temporary tenancy of a recording studio where he will produce the soundtrack of a new movie production. Another will be getting married in the summer and hopes the ‘sale agreed’ on their new home will not fall through. One shared her new book while another gave a fantastic rendition of her latest song. Some have become national celebrities. A few came early because they were on the way to a family Christmas party or had to go home on the train to the country. A whole group left to join, as they have done for many years, Damian Dempsey at one of his pre-Christmas concerts, running every evening over a whole week.

The smell of mulled wine filled the house. The myth of the secret recipe it was based on and the poitin it contained, from an old woman living in an ancient, small cottage at the end of a long lane in the back of the beyonds added to the excitement and the mystery.

Even when it turned out that Jamie Oliver had actually spoiled the secrecy of the recipe by publishing it on his website, and the poitin, in fact, was the last remaining from a present Pádraig had received many years ago from his old friend Siosamh – it took away nothing from the magic of the evening.

Some of his friends had brought along their instruments. Between some old Irish songs and some new, self-authored ones, the evening ended in a very special way.

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At times, I listen to German radio very early in the morning or late at night. For some reason, Rainer Maria Rilke came up a few times recently.. One of his poems struck a real chord with me. One, I hadn’t read before.

Extinguish my eyes, I’ll go on seeing you.
Seal my ears, I’ll go on hearing you.
And without feet I can make my way to you,
without a mouth I can swear your name.

Break off my arms, I’ll take hold of you
with my heart as with a hand.
Stop my heart, and my brain will start to beat.
And if you consume my brain with fire,
I’ll feel you burn in every drop of my blood.

As all poems, it will mean different things to each person. For me it is about unconditional love, about deep dedication, resilience, and never giving up.

Stop my heart and my brain will start to beat.

Can it get more powerful?

There is a quote by Rilke, from his letters to a young poet, that I also like:

Perhaps all the dragons in our lives are princesses who are only waiting to see us act, just once, with beauty and courage. Perhaps everything that frightens us is, in its deepest essence, something helpless that wants our love.

Act with beauty and courage and the dragons will turn into princesses who just want our love. What a nice thought.

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I look forward to this Christmas. There were times when I thought this would never ever happen again. Happy Christmas? Expecting with excitement the New Year? Not for me. Not for us. Not anymore.

How things have changed.

Pádraig is not walking or talking or being independent. The situation itself has not changed. However, he is showing me how to change my attitude to it. Every day. It is a huge challenge. But everything else would end in disaster.

Pádraig can count on his friends. An he is with Viktor Frankl:

Everything can be taken from a man but one thing: the last of human freedoms – to choose one’s attitude in any given set of circumstances, to choose one’s own way.

Thank you all for all your support and all your help. I cannot imagine what our lives would look like without you.

Happy Christmas and a Happy New Year! Nollaig Shona! Frohe Weihnachten! Feliz Navidad!

One must still have chaos in oneself to be able to give birth to a dancing star.
Friedrich Nietzsche

What better place to go wild than Berlin? What better place than giving birth to a dancing star than the wild, big, diverse, chaotic capital of the Vaterland?

When Pádraig was 15, he spent about 6 months swimming with the German Olympic hopefuls in perhaps Germany’s biggest swimming and coaching centre, living in the boarders’ accommodation, and attending the school attached to the swimming complex. He has fond memories of that time, just a few years after reunification.

It was a wild trip back down memory lane.

Having navigated the colossus that is the new BER airport, having found the S9 that brought us over a nearly one-hour journey out of the airport into the city, we emerged at Alexanderplatz. On a really dark, rainy, miserable Monday night.

Luckily, it was only a 10 minute walk to the hotel we had booked and advised of the wheelchair. We first saw the green neon light with the name of the hotel, “Greet”, and then the steps. Surely, we were looking at the wrong entrance, we thought. Turned out we weren’t. In fact, there was a second flight of stairs inside the hotel before we got to the reception and the elevator.

We decided to take it easy. We didn’t have that many options anyways. Brought the bags to the room and went back out to one of the Christmas Markets around the famous TV Tower. We had twenty minutes before it closed. Time enough for a Bratwurst and a Glühwein.

It was wet. We were exhausted. There was every reason to be upset and angry and trotten down.

Instead, we had the time of our lives. I mean, we were in the capital of European history. On the very square where much of that history had taken place. The centre of famous movies and novels. Berlin Alexanderplatz.

The following day, luckily the rain had stopped, we went back to the pool where Pádraig had swum, we had lunch in the world-famous luxury KaDeWe, and we paid a visit to Checkpoint Charlie, decorated with Ukrainian flags, and a small remain of the original wall that had separated Europe for decades.

We made it back home safely. Avoided the storm that had grounded dozens of flights the previous day. And Pádraig got ready for, as it turned out, one of the best concerts ever: Amble in the Point.

It must have been some night in the sold out 3Arena.

Pádraig’s enjoyment of these wild journeys going on endless public transport trips, having long walks through huge cities, and eating Bratwurst in the rain is our motivation and keeps us wild.

He allows us to still keep that chaos in ourselves that enables us to give birth to a dancing star. We keep him safe. He keeps us wild.

I’d rather be a comma than a full stop.
Chris Martin

I am beginning to dislike the label „therapist“ and „therapy“. And I’d say that I‘m not alone.

With a severe brain injury, life seems to turn into therapy.

Rather than moving, you have physiotherapy.

When you need a good chair or a bed, you go to an occupational therapist.

For relaxation, rather than doing mindfulness, you need a holistic therapist.

Even listening to or making music is facilitated by a music therapist, rather than your pals practising with you in your parents back room or garage.

Seriously?

No wonder so many people become tired and fed up with therapy – when all they want is what all of us want and need: movement, satisfying their curiosity and sense of adventure, enjoying memories and energy brought by good music, being in the moment and relax.

No wonder so many affected people run, if they can and are given the choice, when they hear the word therapy.

Nobody said it was easy. No one ever said it would be this hard. – I had Coldplay‘s Scientist on a loop last week. Not the original version but one Pádraig played with this fantastic musician, who works in An Saol as a music therapist, on Thursday.

Life is about Participation. Inclusion. Self-Determination. Equality. Empowerment. Company. Empathy. Respect. Caring. It’s about living in community. Taking responsibility for your action and your duty to care for others. It’s about being and staying healthy.

Life is challenging to all of us. It is also exciting, joyful, and loaded with happy moments. In different ways. We just have to open our eyes. Nobody said it was easy. And yes, at times it can be that hard.

Advent

Today is the first of Advent – A Time of Hope and New Beginnings.

The An Saol Foundation celebrates Advent this time of the year, every year.

This year in the Margaret Aylworth Centre in Glasnevin, just opposite the Met Office. – All Welcome!

If you are around on Wednesday, we might see you there.

email: info@ansaol.ie to let us know if you are planning to attend