I can see a better time when all our dreams come true.
Shane McGowan (1957-2023)

That couple in New York, despite being pretty down and out, could see a better time when all their dreams would come true.

Seriously? Or had they realised this was nothing more than a fairytale?

Christmas is a time when many people get slightly depressed, sad, melancholic, heavy-hearted.

In preparation for my talk to the German, Austrian, and Swiss societies for Neuro-Rehabilitation the week before last, I went back over pictures documenting the total neglect of the health system of people whose diagnosis is an “intolerable life”, people who cannot be “cured”, where any further interventions would just be “wasted”, people who can “justifiably” be neglected, even if this neglect leads repeatedly to life-threatening situations.

Following a suggestion that instead of leading an intolerable life his organs could make many people happy, the health systems made his life nearly intolerable. A destroyed urinary tract, a life-threatening thrombosis, hair unwashed for months, a “spontaneous” haematoma, a life-threatening collapsed lung following prolonged use of a ventilator, a series of infections including MRSA with subsequent year-long isolation, a dislocated extremely painful femur/hip, blisters and pressure sores making the removal of part of his heel necessary —- all these could have been avoided; they happened because of neglect. Neglect that did never seem to surprise anybody because it is the norm in health systems when they deal with “hopeless cases”.

While we were horrified, the health system and those working in it were only too familiar with those horrific, avoidable, secondary injuries. Nothing unusual. Daily routine.

None of the professionals at my talk were surprised by these pictures showing terrible, life-threatening, but totally avoidable injuries.

They were more surprise when I shared pictures of Pádraig’s life today. His happiness. His abilities. Him taking control. Participating and being integrated. I shared pictures that you are so familiar with if you have been following this blog for a while.

Like these from his recent Christmas party to which he had invited his friends, assisted by one of his best friends who keeps everybody in the picture and who each Christmas time does his magic using a secret recipe for a magic drink, which he calls Mulled Wine.

Or, also last week, at the Hosier concert accompanied by one of his best new friends.

There were a few Firsts last week too, like the attempt to pay Jingle Bells.

Or showing us how well he can use his right hand, often ignored by us because we don’t realise how well he can use it. He took a Grasp Switch in his hand and pressed it each time he heard a signal triggered at random. With these reaction time I’d feel safe with Pádraig driving my car.

None of the horrendous secondary injuries inflicted on him during his time in hospitals, the unbelievable comments from health workers suggesting that it might have been better had he died — all that is long behind us.

Without any medication and without being in the care of the health system, Pádraig is enjoying life and taking control of it. None of the horrendous injuries ever re-occured — because they can easily be avoided if you care.

We can see a better time and it’s not a Fairytale.

So, Happy Christmas. I’ve got a feeling next year is for me and you.

The battle outside ragin’ will soon shake your windows and rattle your walls for the times they are a-changin’.
Bob Dylan

Pádraig was really happy yesterday to see Christiane on a video WhatsApp call from Augsburg where I, with Pádraig as a virtual co-presenter, was to present to the annual meeting of the neurorehabilitation societies of Germany, Austria, and Switzerland, attended by 900 practitioners and researchers.

They had invited us to share with them the story of the An Saol Foundation. Although Pádraig couldn’t come in person, he was present there more than anybody else.

To my surprise, the room was packed, with people standing at the back and sitting on the floor. Many talked to me afterwards and wanted to find out more.

Looks like the example is making waves.

With the Congress, there was an industry exhibition where I made a few good connections and discovered a few new, interesting pieces of equipment of great potential for An Saol.

There was a young man looking in from the outside to one of the talks. He attracted more interest than most of the speakers. And there was the famous portrait of “Che” by Irishman Jim Fitzpatrick – at a stand at a small Christmas market we visited on one of the evenings.

I attended dozens of talks. It was clear that we all know what needs to be done. But it was also confirmed that few of us are doing what needs to be done. Few who are prepared to rattle the cage and rock the boat.

There was another thing I learnt: there are two famous John Krakauers in the world. One is the author of “Into the Wild” and other books. The other is equally brilliant, not as a writer, but as a neurologist, not afraid of pushing the boundaries and provoke. The world needs more of people like him.

Because too many people see barriers and restrictions wherever they look. Luckily, there are sufficient straight thinking revolutionaries, like the man on the banner at the Christmas Market, who have realised that radical change is necessary and who are prepared to bring about that change.

While preparing our contribution to the congress, I tried to remember how many people had helped us along the way. Their number was surprisingly high. High enough to be heard, seen, and felt. Not at some distant day in the future but now.

They are ready to do what they can to support us. Change is coming.

It’s time to wake up and smell the coffee.

Because the times they are a-changin’.

I haven’t been everywhere but it’s on my list.
Susan Sonntag

Travelling with Pádraig is fun and a great education.

Fun, because I can share Pádraig’s enjoyment of life and adventure. Education, because I learn so much about other people’s perception of Pádraig.

Last week we went to Madrid for just a couple of nights. Because we love Madrid. Because we could meet some old friends there. And because the flights to the German Christmas markets were too expensive.

It was astonishing to see people’s reactions when we were going into bars and restaurants.

Before we even got there, we had to explain to a very nice lady at Madrid airport whose job it was to organise taxis, that Pádraig’s wheelchair did fit into most converted cars. And that we would too. She called a “Eurotaxi”, which is what the converted taxis in Madrid are called, warning the driver that this was a gigantic wheelchair, accompanied by three adults with three bags. – Thankfully, it turned out that the driver took life, and us, in a less dramatic way.

Next stop was the hotel we had booked, giving them plenty of notice that one of us was a wheelchair user. No problema. When we got there and had checked in, it turned out that the lift was too narrow – obviously, un problema bastante grande. The receptionist was a bit under pressure, I’d give him that, but what followed was very hard to swallow: Had we really advised beforehand that one in our party was a wheelchair user? Could we show them the email? Had we sent them the dimensions of the wheelchair? I mean… really??? Even when we showed them the email and said that we had never been asked for the dimensions, he didn’t really calm down. In the end, we found a cheaper, better, and more friendly hotel around the corner.

The day continued with bar staff telling us getting in would be really complicated, others that we needed to sit in a part of the (empty) bar we didn’t really want to sit in.

In the end, it all turned ou fine. We had pulpo (what else?) in the Cervecería Alemana (where else?), an exceptional breakfast in the Barrio de las Letras, and a wonderful walk in the Retiro. We met our friends and had a fabulous time with them in a little restaurant on the Plaza de Santa Ana.

The return trip turned out to be very exceptional. It was so windy at Dublin Airport that many flights were re-routed, though ours safely landed on time and without too much turbulence. As soon as all passengers had left, one of the flight attendants came over to us and said that Pádraig was going to be lifted down the steps of the aircraft because they couldn’t use the normal lift-on as it was too windy. When they heard about Pádraig’s height, they checked with the Operations Headquarter who asked airport police and firefighters to assess the situation.

For an hour or so, it was unclear how and when Pádraig was going to be able to get off the plane. Eventually, they used one of the big fire engines to act as a wind barrier and got us all of with the normal lifter.

Staff at the airport, including those with more than 15 years of experience, all said that they had never experienced anything like this first hand.

Pádraig will continue to travel, to live, and to enjoy life.

And one day the world will be ready for Pádraig.

He’s on the job. The rest of the world is on his list.

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Once Pádraig was safe and back at home, I went to the An Saol Centre where a UCD student and two experts from the Galway-based company ByoWave had started to set up the new Games Room. “Cool” isn’t the word to describe it.

It’s super cool and it will add a whole new dimension to the An Saol Foundation’s offering to its clients.

In reality there are very few things you actually have to do before you die.
They include: ring your mum more often; recycle; watch The Book of Mormon.
Richard Osman, The Guardian (5 Oct 2013)

Osman says it all in his articles on The 100 top things you honestly don’t need to do before you die.

In his review of various articles and books, Richard Osman found, among many other things you apparently have to do before you die :

50 boutique hotels you must visit, 100 ways to make your garden or your children happy, and 5,000 fonts you can’t PowerPoint without.

His response to all this advice? The 100 top things you honestly don’t need to do before you die.

You must never swim with dolphins. If they ever want to swim with you, I’m sure they’ll let you know. Forget Machu Picchu; the sunset on the west coast of Scotland is as beautiful as any you’ll see in the world, and it’s really nearby. And by all means go kiteboarding above the Andes, but that might be the thing you do literally just before you die. And the Guardian would miss your Soulmates subscription.

What’s left? – Call your mother more often. Recycle. Watch The Book of Mormon.

I went to New York last week to visit the Success Rehab Centre who had invited me a long time ago when they had heard about Pádraig’s accident and our efforts to establish a rehab centre in Ireland. And to visit Prof. Joseph J. Fins, the man who wrote the book everybody interested in severe Acquired Brain Injury should read, Rights Come To Mind.

There was one free afternoon. So we went to Times Square and got very heavily discounted tickets to this musical that apparently has been around Broadway for more than 15 years.

It was the funniest 2 hours I had in a long time, perhaps ever.

The videos on the songs, such as Hello or I Believe, cannot really capture all the hilarious and political incorrectness and irreverence of the musical by the makers of Southpark. But they will give you an idea.

It is hard to believe, but true, that one of the many stops of The Book of Mormons US American Tours was Salt Lake City.

One song, Turn It Off, is my personal favourite.

I got a feelin’ that you could be feelin’
A whole lot better than you feel today
You say you got a problem
Well, that’s no problem
It’s super easy not to feel that way.

Turn it off like a light switch
Just go, click
It’s a cool little Mormon trick
We do it all the time.

It answers, in a very funny, satirical way, one the big questions I haven’t found an answer to: how is it that people manage to ignore what they know is wrong – and they could change for the better?

Well, they just turn it off like a light switch, a cool little trick the Mormons must have taught the rest of the world.

The three days we were away from home and from Pádraig were incredibly busy. Full of impressions, emotions, and experiences. Everything worked out. There were no critical emergencies.

The worst thing that happened at home was that our car got a flat tyre when Pádraig was on his way to Vicar Street to see one of his favourite bands, Bell X1. His sister and friends were there to quickly deal with what was a bit of a difficult situation in a most efficient way. They handled the situation better than we would ever have been able to.

The world does not collapse on any of us when we are apart for a few days. We believed. Now we know.

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.