Your chess pieces have learned to think and just jump off the board.
Wolfgang Niedeggen, BAP, “Zehnter Juni”

If you haven’t watched them yet, watch the clients of the An Saol Foundation sharing their stories #WeWouldRatherLive

If you haven’t heard it yet, listen this Sunday to RTÉ Radio One at 19:30 to the fourth of six episodes of #LastOneOnTheTrain, listen back on RTÉ Player to previous episodes.

I’m sitting in a hotel room in Hamburg. Flicking through the channels. Stopping at a recent live performance by BAP, with a Wolfgang Niedeggen looking as old as I feel, playing the songs I danced to in the early eighties. They were songs of longing, full of energy and conviction, always with a great sense of justice, straight on, jraaduss. With a very distinct sense of what is right and what is wrong.

I am watching as he announces a song that he wrote following the huge demonstration in Bonn of 10th June 1982. A song, he says, that today is as current as it was more than 40 years ago. Think Ukraine, says he.

You could add: think Gaza, think Sudan, think Democratic Republic of Congo, think Afghanistan, think Haiti, think Syria, think Myanmar. Nearly 350 million people around the world are experiencing the most extreme forms of hunger right now. Of those, nearly 49 million people are on the brink of famine, says the US World Food Programme. They add: Conflict is the number one cause.

I find it hard to watch the man-mind misery where people are, for no reason, used as pawns, when they could all live in peace with each other. Niedeggen is right: we need to jump off the board and stop allowing those in power to use us as their disposable instruments.

I also find it hard, and sad, to see, today, a lack of energy and conviction we had when we were in Boon in 1982 and when Niedeggen first sang 10th of June. We need to develop our sense of justice and ensure that nobody who plans atrocities of any kind to whomever wherever and whenever, will be able to count on us. Plant uns bloß nicht bei Euch ein! We won’t be any longer your chess pieces.

While I am in Hamburg, collecting my Marathon Bag for tomorrow’s race I won’t be running, Pádraig is out in town, having breakfast served to his table in Bewley’s on Grafton Street.

I have had plantar fasciitis, an inflammation of the fibrous tissue (plantar fascia) along the bottom of my foot, for the last few months. At some stage, I could hardly walk. While it has been getting better lately, it didn’t get well enough to allow me to train properly, never mind to run 42.2k tomorrow.

So, I decided not to run this race but to support my three friends from Ireland who had decided to run it with me this year.

While I will be supporting them, I am also so jealous of them. There is nothing that compares to the buzz of a marathon morning, the hours on the road, the conversations, the determination to get over the finishing line, the sense of achievement.

Another time.

BAP sings in the dialect of Cologne. Their website shows the translation into main stream German.

Here is a live performance version of the song from 1983.

And here is the translation into English of the BAP song Zehnter Juni, 10th July.

In a situation that seems dire to us, he keeps going. He can be do proud of what he has achieved.

Yesterday, Playback, the weekly Saturday morning radio show, presented by Sineád Mooney, looked back at last week’s Episode 2 of the fantastic series on young wheelchair users in Ireland, Last One On The Train, presented by Susan Dennehy, featuring Pádraig.

Just when Playback was over, we started a session in the An Saol Foundation Centre with Pádraig and the help of Fabian and Christiane, two wonderful therapists from Germany, assisted by Kay Coombes in the U.K. and Margaret Walker in New Zealand, no less. We tried out new positions that would help Pádraig to position and maintain his head and upper body position better, we even tried out the Andago which Pádraig managed brilliantly, taking steps, pushing the device forward and backward. It was a first, lots to practice yet, but first steps nonetheless.

Check out http://www.teachansaol.ie for details and updates on our efforts to build a dedicated National Centre for Life and Living with a server Acquired Brain Injury. Check out the home page, the About Page, and the picture gallery. There are videos on questions asked in the Senate and in the Dáil’s Public Accounts Committee on why none of our leaders is exercising their leadership, cut through the smoke, and allow the An Saol Foundation to deliver. There is even a video in which our new Taoiseach thanks the An Saol Foundation for their leadership when he launched, not too many years ago, An Saol’s pilot demonstrator at the National Carers Conference in Croke Park.

Will he announce the Next Step, Teach An Saol in 2024?

Ask your politicians when they come knocking on your door looking for your vote.

Here is a one-pager that might help you!

Pádraig, the unbelievable story, as told by broadcaster Susan Dennehy, of a young man who at 23 refused a place in a nursing home and now lives a full life. – Sunday, 14 April 2024, 19:30, RTÉ Radio One

‘Last One on The Train’ is an original docu-series that tells the personal stories and day-to-day experience of 6 young wheelchair users in Ireland. Today, in episode two of the six part series, it’s Pádraig’s turn. – Please tell friends who might not be aware of this, to tune into Radio One tonight.

As it happened, yesterday, Pádraig had to wait for several buses before one arrived that had enough space for him when he went into town to visit Trinity College and a great stained glass exhibition in the National Gallery.

On the way back home, he took the train.

When Susan prepared the programme on Pádraig, she didn’t know (nobody did a few weeks ago) what impact Pádraig would have on the development of Teach An Saol, the new National Campus for Life and Living with a severe Acquired Brain Injury, with social, activity, respite, and temporary assisted living hubs, planned for North Dublin.

Here is what Senator Mary Fitzpatrick asked the Minister of Health last Thursday in the Irish Senate.

While Senator Fitzpatrick very eloquently put the case for Teach An Saol to the Minister for Health, the Minister for Charities who answered the question on behalf of Minister Anne Rabbitte, Minister for Disability, whom the Minister for Health had asked to answer the question – well, let’s put it mildly and sympathetically, he didn’t seem to be engaged, he did not seem to be familiar with the issue, and he seemed to read out an answer provided to him by civil servants, an answer that omitted the fact that they had a proposal for the development on their hands since June 2023, had received the capital submission they said they are still waiting for, but had decided not even to put it on the agenda of the relevant meeting where it could have been discussed. You can see why I doubt the efficiency of that system – and see the need for leadership and action by those responsible.

Senator Fitzpatrick tabled her question following a visit by Pádraig, with other families and some staff members, to the Irish Parliament.

We presented our proposal for building Teach An Saol to Irish parliamentarians. The proposal was well received. Thank you to all the Members of the Oireachtas who showed their support.

Pádraig’s story is also the unbelievable story of a young man who, now 33, is inspiring a development which, according to one of the world’s most eminent academics in the field, will serve as an example all over the world for similar programmes.

Visit www.teachansaol.ie for more information.

Download and print this one-page description with four asks for politicians calling to your house in the coming weeks.

Dancer Backstage: Fuck him! He never picks me!
Dancer Backstage: Honey, I *did* fuck him and he never picks me either.

All That Jazz, The Movie

The language was a bit loose in that movie. And it was pretty mainstream commercial.

What Honor Heffernan & Friends presented last Wednesday night in Dublin’s John Field Room at the National Concert Hall was far from mainstream commercial. It felt like as if it came from a whole different world. And there was no loose language.

The first time I heard Honor’s name, I searched for her on YouTube and found a clip of a young Honor singing The Long and Winding Road in the Royal Albert Hall, no less. So I was prepared for a great voice and a magic evening. But not for anything close to what it turned out to be. Pure magic and transformative.

Unfortunately, we didn’t record the practically sold out concert. The atmosphere in the John Field room was so ‘jazz’ that you could smell the non-existing cigars and whiskeys. It was obvious that not only the audience, but also the musicians enjoyed the night tremendously.

For many, it was one of the few occasions that they ever got out, never mind to such a cool jazz concert. All musicians donated their talent and time to Teach An Saol. They were friends not just of Honor’s, but also of Phil’s, Honor’s former pianist who has been recovering making huge progress with some help of the An Saol Foundation.

His friends were delighted to see him and Phil must have felt so much love and friendship from his musical soul mates.

I finally took the time to put together the short video clips from Pádraig’s visit to Torrelavega’s finest, the neurological Élize clinic, where he worked hard with Marcos and Laura on his upper body.

There isn’t a day when we couldn’t learn something.

The days in Cantabria with our Spanish friends were a prime example.

Exercise, physio, stretching, activity, a lust for life – and All That Jazz.

¿Quien me presta una escalera para subir al madero, para quitarle los clavos a Jesús el Nazareno?
La Saeta, Antonio Machado

Antonio Machado was looking for someone to get him a ladder to climb up the cross, to remove the nails from Jesus the Nazarene. Joan Manuel Serrat put music to Machado’s poem, which really captures the spirit and the atmosphere of Holy Week, the famous Semana Santa, in Andalucía.

Listen back to yesterday morning’s RTÉ Radio One Rising Time with Lilian Smith, first mentioning our email to her and then
announcing the upcoming Concert of the Year,
followed by a fabulous cover by Honor of Joni Mitchell’s All I want.

Join us this coming Wednesday with your friends in the National Concert Hall for a great evening in brilliant company, hosted by the legendary Honor Heffernan & Friends – with all proceeds going to the Teach An Saol Project, the National Centre for Life and Living with a severe Acquired Brain Injury.

Ticket are €20 directly from the NCH.

We went on our now annual visit to Torrelavega, about half an hour outside of Santander, to Pádraig’s favourite rehab place in Spain, where Marcos and Laura worked their magic. The three of them were exhausted after their intensive, two hour sessions during the three days we went. They worked mainly on Pádraig’s upper body trying to strengthen his core.

They worked entirely in Spanish with Pádraig and he had no problem following their instructions. The most amazing detail there was not that Pádraig understood them so well but that nobody thought it was a big deal that someone with a very severe brain injury had no problem actively participating in his physio session, no matter whether it’s in Irish, English, German, or Spanish.

Each of the three days, following two hours of hard work, we went out for a walk and had lunch, as close to the sea as we could get.

Pádraig still likes his ‘pulpo’. He had to cut down this year a bit as pulpo a la gallega is now the price of a full menu. An absolute delicacy.

We all had such a great time, trying out the different tastes of Spanish food. It made me realise again how important it is to keep the taste buds going. Using your senses is being alive. During the week, someone mentioned to me that if you cannot use your senses, if you are deprived for whatever reason of sensory input and experiences, you will fall unconscious. He promised to send me the scientific backup for this – but my common sense tells me that this must be true.

The best news of the week, however, came from Longford.

Niall was brought back home from England following a devastating accident 35 years ago – to die. The family was told that there was no hope. For decades, he was not given access to a neurologist. He lost all his teeth because he was never going to eat again. Everybody, except his family and friends gave up on him.

This week, his sister posted on his Facebook page that he will be transitioning from a nursing home to supported living, were he will be with people of his own age.

We have met Niall many times. He is a good friend of Pádraig’s who has also visited the An Saol Foundation Centre. Niall talks, eats, and uses his tablet for all sorts of therapeutic purposes. Also for fun, I am sure. He and his sister are absolute heroes. For neither of them, giving up was ever an option.

The health system should be taking notice.

Machado’s poem and Serrat’s song end with the lines:

We don’t need ladders to take dead people down from their crosses.

Because we believe that we can walk on water, defy all the odds, demonstrate to those who write us off that they are wrong. Never give up.

Happy Easter!

Nothing behind me, everything ahead of me, as is ever so on the road.
Jack Kerouac, On The Road

This month is Jack Kerouac’s 102nd anniversary, he was born in March 1922 – and we could be going anywhere. There is no map, there are no orientation points, nothing behind us, everything ahead of us, just waves and an endless horizons. If the ship’s compass is working and the captain gets his bearings right, we’ll arrive in Santander very early this morning, having spent two nights and a day on Brittany Ferries.

The crew is almost entirely French, some only speak French. After all, this is a French ferry company. Most passengers are, naturally enough for a ferry going between the two countries, English- or Spanish-speaking. So, it’s like the old saying: when in France…  and brushing up on your leaving cert French if you ever took it.

The sea is beautiful and calm. There is a bit of sunshine outside. Great cloud movement. Our two-berth cabin – there are only two-berth accessible cabins on this ship – is big enough to pace a very thin, self-inflatable mattress on the floor. We are all together, with not much to do but taking it easy.

Very different from St. Patrick’s Day last week. Every city, every town, and most villages had their parade and big celebrations. The Dublin parade is as big a tourist spectacle as the Carnival in Rio of Cologne is. There are hundreds of thousands in town struggling to get close enough to the road to see the bands, the floats and the dancers.

We went to Leitrim. It wasn’t hard to stand right on the edge of the footpath in Mohill if you were prepared to move a little bit up the hill on main street. We were standing almost in front of one of the old pubs. Some of the customers emerging as the parade approached, clearly had had either a very bad night or a rough early morning.

The parade passed right in front of our eyes and we could see every detail of the lovingly restored tractors, immaculately maintained vintage cars, and shiny new super trucks passing by. The parade went up the fill, around the church and back down the hill. When the parade had passed after about a quarter of an hour, we didn’t wait for the second turn, took advantage of the break in the parade, and made it back to the car.

All this is already becoming a distant memory as we look forward to a week of walks along the Atlantic ocean, plenty of Pádraig’s favourite tapas, especially pulpo, a few visits to our neuro physio and exercise friends in Torrelavega, lots of time together, and all with a timetable set entirely by us.

Nothing behind us, everything ahead of us, as is ever so on the road.

May the road rise up to meet you. May the wind be always at your back.
May the sun shine warm upon your face; the rains fall soft upon your fields and until we meet again, 
may God hold you in the palm of His hand.

It’s St Patrick’s Day. Springtime has definitely arrived. It’s Pádraig’s Namenstag. A national holiday in Ireland with festivities across the Country, the biggest one being the St Patrick’s Day Parade in Dublin. There is green Guinness, people die their hair green, and even President Biden wears a green tie when the Irish Taoiseach presents him with a bowl of (green) shamrock in the White House.

We had a St Patrick’s Day party in An Saol with traditional live music offered very generously by two Dublin students. There aren’t many happy occasions for the families attending the An Saol National Centre, but the St Patrick’s Day get-together most definitely is one of these. We were all a bit shy with the singing and promised ourselves to do better next year. Staff and clients brought in home-made cakes and buns; and there were coffee, tea, and soft drinks to wash it all down. It was a happy day.

The next occasion to meet up will be 03 April in the National Concert Hall, where Ireland’s most famous and hugely talented Jazz singer Honor Heffernan and her friend have organised a fundraiser for Teach An Saol.

Please let your friends know about this wonderful concert and consider joining us for what promises to be a wonderful night in great company. Tickets are available directly from the National Concert Hall. All musicians will perform for free and all proceeds will go directly to the An Saol Foundation’s Teach An Saol project.

Last week, Pádraig had a rare visit to a hospital to investigate to which extend an eye surgeon could help his eyes to stay open more easily. We decided to get opinions from as many surgeons as possible before taking a decision on how to proceed.

The visit brought back many memories from what now seems to be a long, long time ago. But, as always, it was very educational. We learned about the procedures the eye surgeons perform. And we were reminded that many doctors are risk averse and don’t see the need for surgical interventions with severely disabled people like Pádraig, unless the intervention is critical.

It became apparent that even an eye consultant can underestimate the importance of being able to see.

This was the first consultation of, hopefully, several. We are learning and as we do, have more very concrete questions. For Pádraig to be able to open his eyes more easily would make a massive difference for him – and make it easier for people meeting him to feel his presence.

Happy St. Patrick’s Day!

Starting from zero got nothing to lose.
Tracy Chapman, Fast Car

‘Fast cars’ and ‘nothing to loose’ often align. Tracy Chapman and Janis Joplin are just two singer songwriters who cover that in their songs. If you’re busted flat in Baton Rouge or have an old man who’s got a problem you gotta make a decision and leave tonight or live and die this way.

I’m lucky that Pádraig is generous and tolerant.

He did pick a fast car but he didn’t drive away. He picked it in a fantastic video game, Forza Horizon, in the An Saol Foundation Centre’s new Gaming Room. And we all had serious fun.

It was liberating. For a few moments, we forgot that we were all pretty much cramped in a small room in Santry, the Centre’s former store room – and not in Mexico’s magic Sonora Desert. The cheers and encouragement to get out there and drive that fast car along the race track, the spectators shouting out their advise on how to pass the other drivers, the recognition and sense of achievement when he passed the finishing line – all that transported Pádraig into another world.

Not all technology is useful . But if I compare this racing game with its challenges to many of the ‘therapeutic’ very clinical old-fashioned cognitive ‘games’ offered by more traditional Rehah specialists, I wonder why gaming is not used much more in settings like that of the An Saol Foundation to help people concentrate, strategise, plan, and move.

Pádraig was out a few times last week. One evening with his friends in a nearby pub, having a bite to eat, a bit of a drink, and a good time.

Yesterday, he went out to vote on the two referenda put to the people of Ireland. For once, I suspect he went with the majority – although that was not what he, and certainly not the Government, had expected. I wonder how politicians feel like tonight. All parties in the Irish parliament, the Dail, except for a small, one T.D. party, had advocated for a ‘Yes’ vote.

About three quarters of the voters voted ‘No’. Leo Varadkar, the Irish Prime Minister or Taoiseach, said on TV that, clearly, the Government had failed to explain the referendum well enough to the people. It didn’t look like as if the thought had crossed his mind that the people had understood what the referenda were all about and decided that they didn’t like it. How out of touch can you be?

Pádraig continues to stand up for his rights and opinions.

He also stands on his feet for a while most days. Sometimes, I think back to the days when I was nearly desperate trying to explain to staff that standing brings a long, long list of benefits and is something that all of us have to practice, including Pádraig and all of the clients in the Centre.

Back then, I felt we had nothing to loose. There were days when I was looking for that fast car, fast enough so we could fly away. – Not anymore.

We have come a long way.

Next stop: Teach An Saol, our very own “House of Life”. We have the plans and the proposal. We have the professionals who are ready to get on with it. We have identified the perfect plot of land.

Somebody still has to cut the knot. Remove the barriers. Somebody has to thumb that diesel down before it starts raining.

We will not be busted flat in Baton Rouge, nor anywhere else.

Because, unlike Tracy and Jane, we’ve got a lot to loose.

Now is now. Next time is next time. Hirayama in Perfect Days

We went to see Wim Wenders‘ new movie Perfect Days. It’s nearly two hours long and very slow moving. There are no fast moving actions, no nerve-racking suspense, no fancy CGI animations, the beautiful music is mostly playing from cassettes originating in the 70s or 80s. Not what you’d expect in a two hour movie these days. And the hero, if there is one, is a man living on his own in a tiny Tokyo apartment who wakes up every morning at the same time at the sound of an old lady brushing the small lane beside his house. No alarm clock. In fact, no clock or watch at all. There are a few interruptions to his daily routine and hints about other aspects of his live, some of which cause him upset and sadness. But he gets over it and continues to live in the moment, in perfect days.

In one challenging situation he meets the terminally ill ex-husband of the lady who runs the restaurant he frequents regularly. But then they play Shadow Tag and experiment with fundamental questions such as whether shadows produced by a single source of light get darker when they overlap.

The more I reflect on the movie, the more sense it makes to me, the more it touches me and the more I like it. It is simple, yet profound.

Like most things we experience are – only that other people make them so complex that they become unaccessible.

Last Friday, we woke up to heavy snowfall, “heavy” in the Irish context. It was a beautiful morning and a delight to see Dublin covered by a white blanket. Schools closed, people didn’t make it to work, traffic came to a standstill.

The early morning streets were packed with people taking pictures. Some had never seen snow and so happy to finally experience it. The miracle didn’t last, snow changed to rain, and by the evening, everything was back to normal.

On Wednesday afternoon, I spent a few hours with a friend, Mary, who was the wife of the late Tim O’Brien, who died in 2017 of Motor Neuron Disease (MND) and who the Irish Times remembered in November 2017:

Prof Tim O’Brien, who has died at the age of 65, was Ireland’s first professor of orthopaedic surgery. Remarkably, he was also a renowned scholar on the cairns at Newgrange and Loughcrew, on which his pioneering research was published as a cover story in Nature, the world’s leading research journal.

Perhaps the first time I heard about MND was when there was great publicity around filmmaker Simon Fitzmaurice‘s MND. As Tim, Simon died in 2017. The last time I heard about MND was yesterday morning when Brendan O’Connor dedicated much of his radio programme to Charlie Bird, one of Ireland’s best known news reporters who is dying from MND.

I had not heard about Tim’s case until his wife contacted me and told me their story. Part of this was reflected in the Irish Times article.

O’Brien spent the past 20 years as one of the world’s longest survivors of motor neuron disease, living at home using a ventilator to breathe, while continuing to work as an expert on gait analysis at the Central Remedial Clinic and writing academic articles. His interests extended from orthopaedic surgery to archaeology to classical music, including a published work on Shostakovich.

I now know that there are other parts of that story which I and so many people attending the An Saol Foundation Centre immediately recognise – but which have never come up in the high profile stories of Simon and Charlie. Their stories focus on the amazing experiences they had and have living with MND.

Mary’s story and that of many of us is about us having to deal with a system that has been described by those who should know, as dysfunctional, a disgrace, and unfixable, like Fintan O’Toole, Dr Jimmy Sheehan, or Martin Phelan. “Senior people (in the HSE) clearly believe they are a privileged elite. It’s an “us and them” mentality”, according to  Liam Doran. Oireachtas Committees and the Ombudsman have repeatedly stated similar views.

Mary’s story was never high profile. A medical doctor herself, she cared for her husband, who was completely dependent on her expert support at their home, on a ventilator, for more than 20 years. My common sense would suggest that someone with that dedication, knowledge, and experience, not easily matched in the country and in the world, should have been given all the support she needed.

But, perhaps not surprisingly, the health system treated her and her husband as it does routinely, and as documented in Primetime Investigates, as Troublemakers. Rather than listening they go on the attack.

Mary’s story, as well as that of many others, including that of our friend Patrick Fitzgerald and his family, is still being repeated today. In the opinion of Paul Cullen, The Irish Times Health Correspondent,

David versus Goliath doesn’t get any more pronounced in Ireland than the battles between vulnerable patients and their families on the one hand and the behemoth that is the Health Service Executive on the other.

Sometimes I wonder, whether there is anybody listening. And if there is, what it is they are doing to stop this cruel and cold attitude.

Nobody will ever be able to claim ignorance.

Martin Luther King Jr., fighting all of his life like David versus Goliath, once said, To ignore evil is to become an accomplice to it. He was assassinated on 04 April 1968 in Memphis, Tennessee.

I have been told several times that help and support for those ‘few’ with a severe Acquired Brain Injury would take away from the healthcare of many thousand children with speech problems, from thousands of people whose conditions and injuries could be cured.

The fact is: one shadow is as dark as two overlapping ones.

Try it.

Now is now. We cannot and should not wait for a ‘next time’.