More smiling, less worrying. More compassion, less judgment. More blessed, less stressed. More love, less hate.
Roy T. Bennett

Ireland’s best kept secret is that of the annual pre-Christmas Late Late Toy Show set of last Friday. This year, Pádraig’s younger sister got four of the vary rare tickets to a sneak preview on Thursday afternoon. It was absolute magic to get into the RTÉ studios and into the set of the flagship programme of the world’s longest running Talk Show.

Pádraig saw the action not just in front of and behind the cameras, but through a camera. RTÉ staff could not have been nicer and more accommodating. We saw the new presenter, Patrick Kielty, having great fun with the kids all dressed up and ready for what was most likely going to be the most wonderful day in their young lives.

At the end of the Toy Show preview session we had a coffee.

And then, as if that hadn’t been sufficient excitement, Pádraig’s sister had the best idea ever: she’d show us around her workplace. What for her is by now routine, for us was a whole different world.

Pádraig went into the control rooms of Ireland’s two official TV channels and saw his sister’s pretty small studio where she works as a continuity presenter – including the red button she uses to interrupt whatever is being transmitted at the time to give an overview of the upcoming programmes to the nation. Imagine.

The highlight of his visit, however, was the weather forecaster studio with its blue screen and screen overlays, including the famous isel bars and all. The weather forecasgter on duty couldn’t have been nicer.

Leaving the RTÉ studios, we were in good time to make it to one of his best friend’s graduation in Trinity College, TCD. We met her friends who she had told us so much about and, especially, her mother who had made it all the way from Cork to be with her daughter on this very special day.

Now we’re both TCD graduates, she told him.

In response, Pádraig smiled one of the biggest, most beautiful smiles he had shared with any of us since his accident.

The day ended with all of us going to bed.

Totally exhausted.

With the biggest smiles on our faces.

And in our hearts.

There’s a green one and a pink one and a blue one and a yellow one
and they’re all made out of ticky-tacky and they all look just the same
Malvina Reynolds

I always thought Pete Seeger – the man who said at the 1965 Newport Folk Festival when Dylan used an electric guitar to play Like a Rolling Stone “If I had an axe, I’d cut the cable right now!” – had written Little Boxes. Until I listened to the man himself clarifying that, in fact, Malvina Reynolds had written it.

And the people in the houses
All went to the university
Where they were put in boxes
And they came out all the same
And there’s doctors and lawyers
And business executives
And they’re all made out of ticky-tacky
And they all look just the same

I listened to the song again because I believe it might give the answer to one of the fundamental questions I haven’t got my head around yet since Pádraig’s accident:

Why are those with a severe Acquired Brain Injury (sABI) left behind?

Last week was one of those brilliantly busy ones with some really incredible ‘firsts’ and some equally brilliant confirmations of Pádraig’s abilities which I want to share with you.

Here is Pádraig playing music.

First the tin whistle.

Then the pipes using the ‘enhanced handscupe’ for the recording of an RTÉ radio programme to be aired early next year.

A group of UCD researchers joined in for the recording. One of them had set up a company manufacturing “The Next Level of Adaptability and Customisation”, the award-winning super cool Proteus Controller by ByoWave. And guess what? – They left one in An Saol for our soon to be set up accessible Games Room.

The real “first”, however, Pádraig stunned us with was a much more low-tech, but quite tricky, paper-based exercise which he had attempted some time ago. Back then, he hadn’t managed to complete it successfully.

Have a look yourself.

The task was putting these six sentences into the right order. To be honest, it took me a while to get this right. There were a lot of different steps to go through. Reading, re-reading, remembering, checking and double-checking. Final check. Pádraig got it right.

And they all play on the golf course
And drink their martinis dry
And they all have pretty children
And the children go to school
And the children go to summer camp
And then to the university
Where they are put in boxes
And they come out all the same

At the end of the week, it had become blatantly clear that doctors, lawyers, and business executives need to move out of the little boxes they ended up in. Urgently.

Of course, I know this is an awful lot to ask for. It might almost be as impossible as wishing for World Peace. We won’t give up just yet. On either.

Although, these days it can seem, at times, that we’re running very low even on hope – for both, world peace and those guys moving out of their little boxes.

What then if we failed in this world?

Malvina Reynolds has another song I discovered recently that is definitely worth listening to: I Don’t Mind Failing.

I don’t mind failing in this world
Somebody else’s definition
Isn’t going to measure my soul’s condition
I don’t mind failing in this world

I learned a long time ago that reality was much weirder than anyone’s imagination.
Hunter S. Thompson

I wrote this 10 years ago:

I started this blog on 11 November 2013, the day Pádraig and I got ready to leave Ireland for Germany. Pádraig had been hit by 4.3-ton van on 27 June 2013, at around 10am, on Rt.6A, Cape Cod, Massachusetts, USA. He acquired a severe brain injury (ABI) and has been in a coma since, although showing sign of minimal consciousness. Following two and a half weeks in Cape Cod Hospital, Hyannis, an air ambulance had brought him to Dublin where he arrived on 15 July. Over the coming months, we became deeply immersed into Beaumont’s frontline. We learned, how the Irish health system is working at a time of cuts, scandals, and disillusionment at every level of care and therapy. We learned, how people with acquired brain injury are treated. After nearly four month in a six bedroom High Dependency Unit (HDU), with the prospect of remaining there for another nine months, until one of the three beds available in Ireland and suitable for Pádraig would become available in the National Rehabilitation Hospital (NRH) in Dun Laoghaire, we decided it was time to leave.

Everything in the blog is my own, very personal experience and opinion of what has been happening to us since that morning on 11 November 2013. But I think a lot of what has been happening to us is far from being unique. Therefore, I hope it will shed some light on how different health systems deal with ABI. I am usually writing the blog at the end of a long day of work and hospital visits, with a bit of driving and shopping thrown in. While I am trying, I am usually so tired that I find it impossible to re-read what I have written, I just fall asleep on top of the keyboard, so mistakes might slip in which, I hope, you will excuse.

Please share the blog.

Reinhard

Maria, Pat and myself were with Pádraig in a Hamburg hospital where he had just arrived. We didn’t know then that we’d be there for a while, wearing protective gowns, gloves, and face masks. Until he was discharged 14 months later. Imagine. That was what Pádraig saw of us and anybody else who visited him.

10 years after, Pàdraig is playing the tin whistle and is just back from a friend’s wedding which he immensely enjoyed. The company, the food, and the drinks.

I am no longer writing the blog every day, just once a week. And I am no longer falling asleep on top of the keyboard when I am writing it. Mostly.

The last ten years feel like a 100 life times. An eternity without a beginning or an end.

Ten Years After – I’d Love To Change the World

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

Marathoning. The triumph of desire over reason

New Balance

It was a 22,500 sell-out event last Sunday. 16,540 runners turned up on what was a pretty cold and rainy day. 16,347 of them crossed the finishing line. I was one of them.

Dublin is much harder than Hamburg. I knew that from previous years, pre COVID. There are no hills to talk of in Hamburg.

I really wanted to do this, maybe because I wasn’t too sure whether I could. I didn’t really tell people about it.

In the end, I finished Dublin in much the same time as I had finished Hamburg earlier this year.

I have been recovering all of last week.

When I crossed the finishing line, I felt over the moon.

A good friend who had followed me from the start, on his bike, and I then had to walk for a another few kilometres from Merrion Square to Parnell Square to find a pub that was not overcrowded to have that all motivating quiet pint and a good chat.

The following day, I signed up for 2024, both in Hamburg in the spring and Dublin in the autumn.

I’ll do it for that pint at the end. For Pádraig, our family, friends, An Saol, and myself.

With confidence.

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Last night Pádraig went to see Mary Black in Vicar Street. He had met her years ago in Donegal for the first time, and then again in the Inveigh Gardens at the Bell X1 concert this year.

She was supported by her Australian friend Shane Howard who wrote Don’t say ok, also performed by Mary Black. And then Roisin O came on stage. What a voice! I knew her name but had not heard her singing before – and only realised later that she is Mary Black’s daughter.

As an encore, Mary Black and her friends performed a cover of Dylan’s I Shall Be Released, with a reference to the Middle East.

It was a brilliant night out. Heaven had its way and fear had lost its grip, all harmonised. With brilliant music. And hundreds of happy people singing along with Mary’s songs.

No Frontiers

If your life is a rough bed of brambles and nails
And your spirit’s a slave to man’s whips and man’s jails
Where you thirst and you hunger for justice and right
Then your heart is a pure flame of man’s constant night
In your eyes faint as the singing of a lark
That somehow this black night
Feels warmer for the spark
Warmer for the spark
To hold us ’til the day when fear will lose its grip
And heaven has its way
And heaven has its way
When all will harmonise
And know what’s in our hearts
The dream will realise

If I am more fortunate than others I need to build a longer table not a taller fence.
Tamlyn Tomita

I had never heard of Tamlyn Tomita. Turns out she is an actress, quite respectable but not too famous. She must be a very wise woman. There is no other way I could think of that could have expressed better what I have felt and thought over the past few weeks.

The PdD student from UCD came back last week. This time, he brought along an engineering researcher who knows all about designing and making structures. The two were experimenting with the Handscupe, a device very generously donated to Pádraig by its medical device manufacturer. They developed the Handscupe as an innovative, therapeutic positioning device especially designed for the hands. The use of Handscupe in physiotherapy or occupational therapy can have a sustained positive impact on therapy outcome. Over the past months, we have re-purposed it somewhat to help Pádraig along.

Here are the videos with Pádraig using it to communicate and to have some fun playing electronic instruments.

Last week, Pádraig told us that he felt fortunate. To be with his family, to have his friends around, and to be able to go to the An Saol Centre. Of course, he didn’t feel lucky for having had the accident ten years ago. Who would. He could have done without it and still feel fortunate.

This is hard to fathom for me and, I guess, for any of us. We couldn’t even get close to understanding Pádraig’s life and the situation he finds himself in since that day in June of 2013. That split second when the driver of the pickup truck didn’t watch the cyclist he was overtaking – but, most likely, the other car that had just pulled out of a side street and was now, all of a sudden, heading straight towards him. The driver that was never prosecuted. The insurance that never paid. The doctors who were pushing us to donate his organs. The health system that badly failed him.

While Pádraig is right that he is fortunate to have so many people around to help, support, and encourage him. To crack jokes, enjoy concerts, and discover new worlds with him. It is extraordinary for him to see his life this way.

There are no words I can think of that could even get close to capture or describe his forgiving, generous, resilient, and beautiful mind. It is that mind that has allowed us to build a longer table, instead of higher fences.

There is so much Pádraig could teach the world.

If it would only listen.

I can’t go on. I’ll go on.
Samuel Beckett

Playback on RTÉ Radio One on Saturday mornings is a programme Pádraig listens to most Saturdays. Yesterday, they played a clip of our good friend Vincent reading one of his poems, which he had called “Beckett on a Boreen”. It’s just under two minutes, totally absurd, brilliant and incredibly funny. Only in Leitrim. Listen to it. It will brighten up your day.

There were another few reports from the past week that caught our attention.

Like the one in which a journalist reminded a politician that after the last really bad floods in Middleton, Co. Cork, in 2015, they had promised to build flood defences within five years. Last week, the town was, again, totally flooded, the livelihood of many people destroyed by masses of water – three years after the flood defences were supposed to be built. When the politician blamed the complicated and slow planning process, the journalist stopped him and checked whether he had heard that correctly: the Government blaming their own bureaucracy for grinding desperately needed projects to a halt, or, even worse, preventing the projects from starting in the first place.

Even when everybody agrees, including the Government, things don’t happen, not because of a lack of funding, but because of bureaucracy not working.

Sounds familiar?

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Yesterday, Pádraig went down to Griffith Park to check out the water levels of the Tolka.

High Water Levels at the Tolka River in Drumcondra

No flooding yet in Dublin, but really high water levels. Pádraig likes his special ptosis glasses that help him to keep his eyes open and take in his surroundings, including a quick snack at the little café in the Park.

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I asked Pádraig whether it was ok with him to blow his cover (and that of his friends who accompanied him). Not everybody would lightly admit to have been to an S Club 7 gig like the one they went to last Monday night. They said it was ok.

You can see how much fun they had.

Life must be about having fun. Even, or especially, when faced with the absurdities of life. I can’t go on. I will go on. Sun, Moon. Moon, Sun. What is it?

Oh Jaysus, lads, sure, how would I know? I’m not from around here.

We’ll have to wait for Godot. With Beckett on a Boreen. In the city. In our everyday lives.

Do not go gentle into that good night but rage, rage against the dying of the light.
Dylan Thomas

I think Dylan (Thomas) dedicated the poem from which this line was taken to his father. It’s message, for me, is that we should live life to its fullest, make the very best we can out of it, burn and rave. While knowing that death is inevitable we owe it to life to value and respect it. Giving in and resign is not an option.

Pádraig did 30 squats last week during just one session in the An Saol Foundation Centre with just a little bit of guidance. When I watched him doing it I began to wonder whether I would be able for this. Then again, I’m more than 30 years older…

30 Squads – Try It Yourself and see how you feel after:)

We wanted to go to a small Spanish restaurant. When we eventually tried to book a table, it was full. On the advice of Pádraig’s younger sister, we tried and got a table in Hawksmoore – a new restaurant “everybody” is raving about.

Apparently, the place, located in the historic National Bank building in Dublin’s College Green, was voted Best Steak Restaurant in Europe. It’s run by two Irish Brothers who set up similar restaurants in New York and London.

It was a real nice evening, giving us time to enjoy and savour, and to reflect on, life.

The most challenging question for which I have not found an answer to is how anyone can decide that someone else’s life is not worth living? How anyone can decide to deny the support a fellow human needs to enjoy life, tu burn and rave?

I am all with Dylan Thomas. Rave and rage against the dying of the light. Don’t go gentle into the night. We have to make the most out of the days we’ve got. And we need people to support us when we that becomes necessary.

It is not a lack of love, but a lack of friendship that makes unhappy marriages.

Friedrich Nietzsche

Pádraig was groomsman at his sister Maria’s wedding last week. He, along with our two families and friends, thoroughly enjoyed the ceremonies, get togethers, and the celebrations with our two families and friends. First, and earlier in the week, in our church with the signing of the civil register, followed by a small get together of the two families in the evening. Then, a few days later, in a beautiful country estate the humanist ceremony with around 130 guests, followed by an all night brilliant party.

Not everything worked out exactly as planned. For one, the Child of Prague only delivered on the first day: although he was put out in the garden before the wedding we weren’t exactly blessed with glorious sunshine on the second day..

The first pictures of the Bride were taken in our back garden. After that, we went across the road into the church which I had never seen as nicely decorated with stunning flower arrangements. The civil register was signed by the happy couple in the Church, as well as by the official witnesses, including Pádraig. He had practiced his signature and did a brilliant job on the day.

Maria was driven in a 40+ year old BMW by her husband’s grandfather to the humanist ceremony a few days later. The ceremony this time, was almost entirely conducted in Irish.

The couple had decided that they would, rather than offering a ‘favour’ to their guests, making a donation to the An Saol Foundation – a very thoughtful gesture that was very well received by their guests.

We all, including Pádraig, had a fantastic day which later spilled over into a long night with the best company of new and old friends, as well as our two families.

I’ll let the pictures speak for themselves,

I wish Maria and her husband happiness, love and good health for their life together.

With a huge “thank you” to all who made the past week one we will never forget.

Love was all around us. But, above all, friendship.

A belief in hell and the knowledge that every ambition is doomed to frustration at the hands of a skeleton have never prevented the majority of human beings from behaving as though death were no more
than an unfounded rumour.

Aldous Huxley

Aldous Huxley was one of those writers, I felt I had to read when in my late teens. Like Charles Bukowski, William Burroughs, Jack Kerouac, or Carlos Castaneda. Today I think I was too young when I first tried. I don’t think I really understood what I was reading.

I don’t have (or take?) the time anymore to read much. But when I come across my ‘old’ favourites today, I see much more humour in their writings than I did back then. And that’s what I like most about them.

Death: no more than an unfounded rumour.

That’s a classic. And it made me smile.

One of my favourite songs is “Everybody knows” by Leonard Cohen. In my mind, its point is that frustrations are based on expectations. Or, in the words of Antonio Banderas, expectation is the mother of all frustration. If you know that the dice is loaded, if you know that the boat is leaking and the captain lied, well – then you won’t be surprised and, thus not frustrated, when you drown, when it’s coming apart.

And yet, last week I struggled. Maybe there was just too much of what everybody knows, happening all at once.

But then, someone sent me a short video of a Tommy Cooper joke about a Mexican, a German, and an Irishman. And I smiled again.

Leon Trotsky once said that life is not an easy matter… You cannot live through it without falling into frustration and cynicism unless you have before you a great idea which raises you above personal misery, above weakness, above all kinds of perfidy and baseness.

In a way, I am lucky because I have this great idea that will carry me through life, despite deep frustration taking hold of me from time to time. And I have family and friends, compadres, who believe in the same idea.

It is this idea that raises us above personal misery, weakness, and all kinds of perfidy and baseness.

Death, after all, might just be an unfounded rumour.

Nobody is accidentally in Alaska. The people who are in Alaska are there because they choose to be, so they’ve sort of got a real frontier ethic. The people are incredibly friendly, interesting, smart.

Marcus Sakey

Could Alaska be a mindset, rather than a place?

A mindset that people don’t find themselves in accidentally, but that they purposefully choose?

People with a frontier ethic who push boundaries and who are incredibly friendly, interesting and smart?

Last week, I felt this frontier ethic a few times.

First, Pádraig experienced a couple of sessions in the Lokomat that were truly outstanding. Sessions he actively participated in, way beyond of what we had expected. Sessions were his supporters allowed him to push those frontiers further out. Sessions that were true game changers.

On day one, they experimented a little.

On day two, a method emerged: he pushed himself up straightening his legs; then he moved his legs, left and right; and only then did he walk on the treadmill of the Lokomat.

It was phenomenal.

Then, on Saturday, I did a bit of pushing the boundaries myself, attempting the Dublin Half Marathon.

Have a look at the pictures. There is a ‘before’ and there are two ‘after’ ones of myself, plus a view of the thousands of runners ahead of me – and a handful of them behind me: a reflection of how fast (or slow) people intended to run.

You can see: my ambitions were low. I just wanted to get over the finish line. Time did not matter in my case.

My friend who joined me in the park to cheer me on took a video just before the finishing line.

You can hear him shouting:”Come on, Reinhard. A few hundred metres more. Keep going.”

I was shattered after the race.

But I thought that what my friend had said to me was so true. No just in this situation, but in life. In many cases, we just need to do a few hundred metres more and keep going.

Several times during the race I had wondered why I was doing it. Whether I should stop and just go home. I’ve also thought that a few times in my life. Why making the effort? What for? Why keep going?

When I look back at Pádraig’s extraordinary exercise sessions of last week, and at my half-marathon, it was my friend who gave me the answer. We do this because we want to cross that finishing line which is often just around the corner. So we need to keep going.

Being able to do it requires friends and supporters: people like those from Alaska.

People who choose to do what they are doing. People who got a real frontier ethic. People who are incredibly friendly, interesting, and smart.

Frontiers are there to be overcome.

And that is exactly what we will be keep doing.