¿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.

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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.

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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.

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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’.

And I’ll stand on the ocean until I start sinking.
Bob Dylan, A Hard Rain’s A-Gonna Fall

What better place to stand than on the Ocean?

A few people have tried and succeeded. Some did it on their own. Some needed a bit of encouragement. Some required a bit of help. All needed determination and faith.

Believe in themselves. They could do it.

You need to know your song well before you start singing and before the hard rain’s a-gonna fall.

Then you can do anything.

Pádraig is doing this every day. Last week he did it with the help of some great people. And also on his own. Standing. Using his voice.

He is also doing his bit for me. He chipped in with his sisters – they all gave me a surprise present to go to a beautiful place in Waterford. Right beside the sea. For two nights of heaven, some of the time literally in the clouds.

Across the see, on the other side of the bay, I could see this house with golden windows which made me think of the story by Laura Richards. If you don’t know it, it’s well worth reading. There are many different takes on it, but at its core, I think, is the idea of perspective.

It’s similar to Ovid’s verse from his Art of Love: The harvest is always more fruitful in another man’s fields (Fertilior seges est alenis semper in agris) or, in more modern language: the grass is always greener on the other side of the fence.

The secret, and the lesson of the house with the golden windows, it is us who live in the house with the golden windows. Just that sometimes, we don’t quite see it that way.

But the truth is: we can live the most wonderful live as long as we have faith in ourselves. As long as we won’t get scared by the sound of a thunder that roars without a warnin’ or the roar of a wave that could drown the whole world. As long as we listen to the ten thousand whisperin’ and care about that one person starving.

We can do what others might think is impossible as long as we believe in ourselves. One day, A Hard Rain’s A-Gonna Fall. But until then, we’ll enjoy our lives to the fullest, and the company of our friends and family.

I’ve stumbled on the side of twelve misty mountains, I’ve walked and I’ve crawled on six crooked highways, I’ve stepped in the middle of seven sad forests, I’ve been out in front of a dozen dead oceans. And I’ll stand on the ocean until I start sinking.

When you have expectations, you are setting yourself up for disappointment.
Ryan Reynolds

Do you want to hear the good news or the bad news first?

I’ll start with the good news.

A group of Ireland’s leading experts in building design and development have agreed to make a collective philanthropic effort to design and plan Teach An Saol. Absolutely incredible and unbelievable. But the results will speak for themselves. Hopefully sooner rather than later

The bad news are not really bad news, just a confirmation of what we know already and what I have been told, again, last week by several people who are in the know: the HSE is beyond fixing.

When Senator Tom Clonan told fellow panel members on Virgin Media TV last week that when he asked the HSE for an additional three hours of home care for his disabled son, their only reaction was a review of his son’s medical card, nobody even blinked.

What about the recent, extremely thorough and costly HSE report prepared by independent international experts that stated that a service for those with a sABI is necessary, that An Saol delivers it, and that the service should be expanded because it will position Ireland as a leading shining light internationally. A service for which the Minister for Disability emphatically pledged her support?

Why is it that this inexplicable surprise statement affected me so much? Why am I not able to ignore what to me is a senseless and heartless remark?

When we are surrounded by really good friends who are going out of their way to support us?

When it is clear, that neither “World Peace” nor a functional Health Service Executive can ever be achieved – but, very likely, a purpose build campus for those with a severe acquired brain injury can.

Why can I not exclusively and only focus on the good things – rather than getting distracted by the unfixable?

I am 65 today. My birthday wish is to keep my mouth above the water line for another few years, to find enough strength to make Teach An Saol a reality, doing the obvious, creating the conditions for Pádraig and others to live their lives as they deserve to live it. With a little help from my friends.

Doing the job for a dysfunctional health system that is still wondering whether it is or it isn’t its obligation not even to do it but to support it! The whole thing is so absurd and funny that I’ll have, no doubt, a very Happy Birthday!

You don’t need a weatherman to know which way the wind blows
Subterranean Homesick Blues, Bob Dylan

Jack Kerouac wrote The Subterraneans in 1958 about his short relationship with Alene Lee in Greenwich Village, following his success with On the Road. Some say the novella inspired Dylan to write Subterranean Homesick Blues in 1965 which, in turn, inspired the Weathermen who, in 1969, became first active on the University of Michigan Campus as Weather Underground.

Something you always wondered about: how on earth are all of these things connected?

I only found out yesterday afternoon, and by pure chance .

It’s like Strawberry Fields Forever or Wagon Wheel (also written by Bob) – you can try forever to understand the meaning of the words, and probably fail. Or you can try to capture, feel the sentiment. That’s what connects the book with the song and the organisation.

They all are about attitude, a culture, and the expressions of a generation.

Yesterday, we went out to Djouce in Wicklow for one of those fabulous mountain walks we had been on years ago.

Somehow and unfortunately, things had changed.

I must admit, there was a moment when I thought how I was going to dismantle those barriers that prevented Pádraig and us to access the trails.

We tried three different parking lots, each with different access gates, each impossible to get through with a wheelchair, never mind with Pádraig’s one.

When you want to do something and it doesn’t work out it’s sometimes better to try a different way, rather than keep banging your head against that wall.

We went to Powerscourt Waterfall instead, just a few kilometres away.

It was fabulously beautiful.

The walk in the fresh air cleared our heads, mine included.

I’m with Dylan.

I don’t need a weatherman to know which way the wind blows. – Pádraig has been doing that every day for the past 10+ years.

I’m also with Kerouac:

The only people for me are the mad ones: the ones who are mad to live, mad to talk, mad to be saved, desirous of everything at the same time, the ones who… burn, burn, burn like fabulous yellow Roman candles.

If we want to live, we cannot waste the little time we have struggling with idiots who put up gates that let some people in but lock us out. With idiots who’ll never get which way the wind blows. With or without a weatherman.

We will find another way to do what we want to do: live, talk, save, desire – everything at the same time.

Burn, burn, burn.

Live, live, live.

‘Would you tell me, please, which way I ought to go from here?’
‘That depends a good deal on where you want to get to,’ said the Cat.
‘I don’t much care where -‘ said Alice.
‘Then it doesn’t matter which way you go,’ said the Cat.
‘- so long as I get SOMEWHERE,’ Alice added as an explanation.
‘Oh, you’re sure to do that,’ said the Cat, ‘if you only walk long enough.”
Lewis Carroll, Alice in Wonderland

If you don’t know where you are going, any road will do. You just have to keep going. You will get somewhere.

There is a lot of uncertainty here. Nearly too much for my German mind.

We need a goal, know what we are aiming for – right?

What about getting that dream job? Buying a gorgeous house? Getting married to the love of your life? Having beautiful children? That’s the way we ought to go, right?

Last week, Pádraig went to see Foil Arms and Hog in Vicar Street with a friend. Live performances are so much better than recordings – which means a lot in the case of these three lads.

The same friend and Maria went out to see the “Friends Experience” the next day, the set of the famous and long-running Manhattan-based comedy show.

Could it get any better?

Another friend of Pádraig’s came to visit during the week. He had been with Pádraig the day of the accident in Cape Cod Hospital, the first to arrive there. He was asked twice by nurses whether he was going to consent to donating Pádraig’s organs. The clinicians would have told us, no doubt, that this had been an emergency situation. That they had not been able to contact us and thus had asked the person closest to Pádraig who was present.

He didn’t consent and Pádraig is not only alive. He has inspired the An Saol Foundation and transformed, possibly saved, the lives of many people. He is running the place and nothing would happen without him pushing it along, with some assistance.

We listen to RTÉ’s Playback programme on Saturday mornings and usually turn off when Richard Curran’s The Business begins. Yesterday was different as he was talking to Jack Kavanagh. Jack, who suffered a spinal cord injury about 11 years ago, very eloquently described what he made out of his new life that suddenly had confined him to a wheelchair. Jack keeps fit and works, I think mostly on his podcast, social media accounts, and as a motivational speaker. I heard him saying many things Pádraig would say if he had a voice. Things that we say for him.

It’s the free spirit and the true heroes who don’t go the way they ought or wished to go but keep going anyway, perhaps even Into the Wild, and engage with and make the best out of whatever they meet on their way. Not just for themselves, but for others too.

They know that they’ll be getting SOMEWHERE as long as they keep going.

And never give up.