“As a society we look back now on how we treated children 20, 30, 40 years ago and we go, ‘God, that was an awful country we lived in’. We will look back on how we treat those children now and we will go, ‘that was an inhumane country we lived in’.”

Brendan O’Connor

That’s what I am thinking about how society treats those with a severe Acquired Brain Injury (sABI). One day we will look back.

The thing is, I don’t have to look back. Brendan does not have to look back. Society does not have to look back.

We just have to open our eyes.

And then take responsibility. Don’t blame anybody else. It’s up to us to change what is utterly wrong.

Brendan did that last week on his Sunday radio show on RTEOne when he interviewed Professor Richard Dawkins.

The former Oxford Professor for Public Understanding of Science had said that bringing a child with Down Syndrome into the world was “immoral.” A woman had asked him about the real ethical dilemma she would face if she found out her unborn child would have Down Syndrome. Dawkins replied to the woman, saying: “Abort it and try again. It would be immoral to bring it into the world if you have the choice.”

Brendan asked for evidence for this – to which Dawkins stepped back from his stance a little bit, stating he may have been “putting it a little too strongly.” – “Given that the amount of suffering in the world probably does not go down, probably does go up, compared to having another child who doesn’t have Down Syndrome, then that’s what I meant”, he continued.

Brendan again asked about Dawkins’ evidence that people with Down Syndrome increase suffering, but the scientist was unable to back up what he just had stated. He went on to admit that he did not know anyone with Down Syndrome “intimately,” to which Brendan said: “Everyone has their own experience of it, and possibly my experience would be that you’re not necessarily right, and I think a lot of people would say you’re not necessarily right.”

One listener commented, “I can name thousands of people without Down’s syndrome who actively reduce the amount of happiness and increase the amount of suffering in the world“.

I was asked by Pádraig’s surgeon in Cape Cod whether I really wanted for someone as active and young and intelligent as Pádraig to have an “intolerable life“, at a time when hospital staff had proposed not once, but many times, that we should consent to organ donation. A nurse beside his bed in the NRH asked us whether it wouldn’t have been better had he died. Someone commenting on an article in The Journal asked whether it wasn’t selfish for us to prolong Pádraig’s “suffering”. The country’s best known neurologist told us on national radio that we needed to understand that a health system with limited resources had to invest those resources in patients with a reasonable chance of a meaningful recovery.

And the list goes on.

Many of them were trained clinical professionals. But to me they sounded a bit like Jim Carey in Bruce Almighty.

You would have thought that those clinicians were all about evidence-based research and treatments. They would have data to back up what they were saying and were recommending. But, like the professor from Oxford, surprisingly they didn’t. They were following some home-made thinking.

The thing is, research has shown, as Professor Andreas Bender explained at the launch of the An Saol Project, that people with a brain injury are as happy and as unhappy, as people without a brain injury. Adapting the earlier quote, you could say, “I can name thousands of people without a brain injury who are deeply unhappy.”

People with a severe Acquired Brain Injury (sABI) are as happy or unhappy as anybody else. And they have a right to life as anybody else.

As Prof. Niall Moyna of Dublin City University’s School of Health and Human Performance said in today’s radio show with Brendan, regular physical exercise is central for all of our physical and mental wellbeing. Just that those who cannot exercise themselves, need help and support to do so.

This is what Pádraig and so many others are doing in the An Saol Foundation’s NeuroRehab Centre.

People all over the world are currently doing this as part of the Iron-Month.

Join them. It’s not too late.

Tell all your friends about it. Make this a global movement.

We have to start somewhere.

You have to start somewhere.

I don’t really care so much what people say about me because it usually is a reflection of who they are.

Prince

Prince really did not care what people said or thought about him. Otherwise he clearly would not have put on that suit and moved the way he did in the video to one of his most famous songs. His voice was something else. How he got those high notes is unbelievable. If anybody ever was just himself it was him.

I was curious what kind of extremes people were most interested in. So I googled “most”. Here is what I found out.

Out of the top seven searches, five were about the “most beautiful woman in the world”. Did Prince know that when he called his song The Most Beautiful Girl in the World?

I was surprised that there weren’t more different “most” searches people had tried like most difficult, or successful, or cruel, or energetic, or loving, or expensive, or economic.

The reason why I was looking for extremes is that there have been so many extremes in my life recently that I wondered about other people’s experience. – That did not get me very far. Maybe they were not interested in finding out about extremes?

To me, routine is boring – who wants to have a boring life?

On the other hand, constant and extreme change can be completely draining and overwhelming – who wants, non-stop, to have the carpet pulled under their feet?

I am where having a boring life, at least from time to time, doesn’t sound that unattractive anymore.

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Pádraig is making good progress with the IronMonth, slow and steady. He is doing his regular distance on the MOTOmed and the Lokomat every weekday. On Monday, he’ll try out the water, for the first time in a long time. We have found a place that has a hydro-pool and is open.

More than 70 people in many different European countries have signed up to do the IronMonth. Check out the Picture Gallery and the recent Press Release.

It’s not too late to join – you just have to focus and finish up with all of us on Sunday, 30 May.

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Not in my wildest dreams would I ever have thought that my life turned out the way it did. That I would be as beaten, as energised; as battered, as strong; as deeply sad, as wildly positive; as clueless, as convinced; as I find myself today. Full of extremes.

At times I feel so disconnected, I find what is going on in the world of brain injury so mad, that I feel as if I wasn’t from this world. That they are of the world. That is why they speak from the world’s perspective, and the world listens to them.

I don’t really care so much what they say about me because it is a reflection of who they are.

You’ve got to stand for something or you’ll fall for anything.

Ginger Rodgers

There is the Mayday distress call. That was invented by Frederick Stanley Mockford in 1923. He was the senior radio officer at Croydon Airport in London and was given the task of finding a suitable call. The majority of air traffic at the time was between Croydon and Le Bourget Airport in Paris. He heard French pilots using the term ‘M’aidez’, literally help me. It sounded like “Mayday” and because it had a stronger sound that both English and French pilots were familiar with Mockford suggested Mayday.

There is the May Day, Labour Day. The Day that celebrates labourers and encourages them to be aware of their rights. In many countries it is a day for street demonstrations, union speeches, and celebrations.

May is the month many catholics devote to the Virgin Mary. Father Latomia of the Roman College of the Society of Jesus made a vow at the end of the 18th century to devote the month of May to Mary to counteract infidelity and immorality among the students.

On the eve of May Day, Saint Walpurga has been hailed by the Christians of Germany for battling “pest, rabies and whooping cough, as well as against witchcraft.” Christians prayed to God through the intercession of Saint Walpurga in order to protect themselves from witchcraft. It was the night that the witches gathered on the Blocksberg.

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This year, May Day is also the first day of the Iron-Month, the first inclusive, community-based event bringing people together around the globe to swim, cycle and run the classic Ironman distances over one month, at their own pace and according to their own abilities. It’s not too late to join.

There is a well-founded rumour that some of the Master Swimmers of Dublin’s Phoenix Swimming Club are planning to sea swim the total 220km+ of the Ironman distance – to make up for us whims who are too afraid of the cold water and thus opt for an Iron-Month biathlon this year.

Isn’t that absolutely and totally amazing? Fair play to them.

There is a catch though. They made me promise that I will swim at least 100m on the last day of the Iron-Month on Killiney beach. – I am shivering at the thought of it. These guys don’t do wetsuits.

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Pádraig did not go up to the Blocksberg last night. He joined some friends to go to the cinema. For the first time in many many month, he went out in the evening. He watched E.T. — the one who desperately wanted to phone home (these were the days before WhatsApp, Teams, and Zoom). They went to a ‘drive in’ cinema and he had the best night in a long time. When we asked him this morning it was a definite “5 out of 5” for fun and entertainment.

• 

• 

• 

Today, he didn’t join a Labour Day March, didn’t listen to labour rights speeches, didn’t start devotions to the Virgin Mary, but went on a long walk to the fabulous Botanic Gardens. The Gardens were packed. Everybody seemed to have decided to enjoy the good weather and the incredibly beautiful spring colours and smells. Pádraig met loads of old friends he hadn’t seen in a while. No plan. Just coincidence. And so nice.

A few days ago, we were all listening to a song on the radio. We couldn’t remember who was singing it.

We used to be giants
When did we stop?

So we asked Pádraig did he know. We went through the alphabet and Pádraig bleeped at the “K”.

“K” for Kennedy, Dermot Kennedy. The song was “Giants“. It was released in June 2020. Seven years after his accident.

Pádraig knows his music and who is performing it better than any of us.

Sure, we knew this all along.

You’ve got to stand for something or you’ll fall for anything.

You have to be burning with an idea, or a problem, or a wrong that you want to right.
If you’re not passionate enough from the start, you’ll never stick it out.

Steve Jobs

Whatever Steve said or did, he is right on this one.

You have to be passionate about bringing change because otherwise you’ll never stick it out.

And you can only be passionate about something if you are feeling it. If it touches you deeply. If you are as close as you can get.

Passion is “a strong and barely controllable emotion”.

There is the option of checking tickets on the train. Regulating traffic. Working in a hospital, a school, a company. Anywhere where things are clear cut, organised, well-structured, regulated, foolproof. Where you follow the rules and fit in. And be happy with that. Because it leaves you with the time to go on your annual leave. Buy a car. A TV set. Get married and maybe buy a house and have children. And be happy.

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The #IronMonth is going international.

So far, 29 friends of the An Saol Foundation have registered to take on the #IronMonth Challenge. The majority in Ireland, but quite a number also on the Canary Islands. While a few of the Irish participants will no doubt opt for this year’s option of a bi-athlon, given that swimming on the Irish shores is not everybody’s cup of tea and certainly not for the faint-hearted – our friends on the Canaries have the good weather, fine beaches, and warmer waters on their side.

Is anybody out there from another country who would like to start a team or, at least, is prepared to take on the challenge themselves? Could we be so bold and aim to have five countries represented in the #IronMan Challenge?

What about our friends in Germany or the USA? Or in Norway, France, Belgium, India, Croatia, Norway or China?

If you register this week, we will send you out one of these collectors’ T-Shirts, one of a kind! If that is not an incentive!

• 

• 

Where else would you participate in a swim, a cycle or a run where the motto is “Leave no one behind”? Where else would you find a community-based, fully inclusive challenge like the IronMonth?

Some of our friends in the An Saol Foundation’s Centre have already started the Challenge. We decided they should get a bit of a head start and lead by example.

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You have to be burning with an idea, or a problem, or a wrong that you want to right.
If you’re not passionate enough from the start, you’ll never stick it out.

The Iron-Month gives the space and the time for everybody with the passion to complete quite a tough challenge.

The An Saol Foundation and its NeuroRehab Day Centre in Santry are advocating for those who have been left behind. We are providing a service for those who have been seen by the health system as a bad investment.

The An Saol Foundation works in a fully inclusive and transparent way, with clients, families, and staff learning from each other and supporting each other to make life and living with a severe Acquired Brain Injury not just possible, but – at least at times – enjoyable and fun.

I have learned that we are not just filling a gap in service provision but that we are also changing the prevailing culture in healthcare for those with a brain injury.

I am burning with this idea, this problem, this wrong of a culture of neglect, secrecy, distrust, and exclusion which I want to right, even in the small setting of An Saol’s Centre and with a small number of families. I have learned that I have to be passionate about this to stick it out. There are more obstacles in the way than I ever imagined. But I am passionate and fully consumed by the idea, the problem and the wrong.

I know that I am not alone.

I know that we will succeed.

Like all the participants in our first Iron-Month Challenge.

We will leave no one behind.

It’s not about how much we lost. It’s about how much we have left.
We’re the Avengers.
We gotta finish this. You trust me?

Tony Stark (Iron Man)

In 2015, Jan Frodeno from Cologne/Germany made history, becoming the first triathlete, male or female, to win both the Olympic Triathlon Gold and the Ironman World Championship title. He won the Ironman World Championship again in 2016 and in 2019.

In many of his winning races, he does not produce the race’s fastest split in any portion of the race but he is very solid throughout.

The world is mixed up. So it doesn’t really matter adding to it by mixing up a quote from Iron Man and Avenger Tony Stark with real-life super athlete Jan Frodeno.

What both of them have in common is that they’re always gonna finish what they started.

And this is what they also have in common with the participants of the —

2021 Iron-Month Challenge

While the “official” start date for the Iron-Month Challenge is Saturday, 01 May 2021, we have given some of the participants attending the An Saol Foundation’s NeuroRehab Day Centre a bit of a head start this week.

Pádraig decided to stick with the biathlon version of the Iron-Month this year.

As all athletes, he has his recovery time scheduled in. So yesterday, we went for a long walk. It is the first weekend in Ireland that people can travel beyond the 5k limit anywhere in the county. We decided to go to the reservoir in the Dublin mountains that supplies the city with water, the Bohernabreena Reservoir.

• 

• 

It was a great walk. Blue skies. A fresh, cool breeze. Nearly perfection.

Tomorrow it’ll be back to the Iron-Month Challenge. With a solid performance.

He’s gonna finish it. I trust him more than anyone else.

Because it’s not about how much we’ve lost. It’s about how much we’ve left.

You are a child of the universe no less than the trees and the stars;
you have a right to be here.

Max Ehrmann (1872 – 1945)

But do not distress yourself with dark imaginings.
Many fears are born of fatigue and loneliness.

Max Ehrmann was an American writer, poet, and attorney from Indiana, whose parents had emigrated from Bavaria/German to the U.S.A. His most famous work was Desiderata – something that is needed or wanted.

Desiderata is one poem I read and listened to last week. The other song/poem I listened to is by Baz Luhrmann, Everybody’s Free (to wear Sunscreen, Class of ’99), performed by Quindon Tarver. They are not unsimilar, although one is a bit more lighthearted than the other.

The advice given to the class of ’99 is solid. I promised myself that from now on I will heed it more than I did in the past. I will start wearing sunscreen. I will get more calcium, I will stretch, sing and floss.

Here is another bit I really can relate to:

Don’t worry about the future; or worry, but know that worrying is as
effective as trying to solve an algebra equation by chewing bubblegum
The real troubles in your life are apt to be things that
never crossed your worried mind

The reason I looked at these poems is that there have been some troublesome and difficult situations. They brought me back to the days when I had to explain to media, politicians and representatives of the health system why An Saol needed to establish a rehabilitation day centre for those with a severe Acquired Brain Injury and their families.

A centre where they would find the support they so desperately needed for ‘Life and Living’ with their injuries, in a trusting, transparent and safe environment.

What I found hard to take was the reality that those who have been hit hard and brutally by tragedy are so often talked about and dealt with without them even being aware of those ‘dealings’. That where there should be absolute transparency and trust, because there is a huge vulnerability and dependency on trust, that trust can and is being broken by those who feel they know. By those who are hiding behind forms and General Data Protection legislation instead of walking their talk. While policy papers and strategies point at the rights of patients, of patients being in the driving seat, of the patients’ rights to know, of transparency, open disclosures and access to information held about them – a Kafkaesque-type system is still in place making these papers effectively maculature.

There is a young brain-injured person who was brought for rehabilitation, for six months, to a centre hundreds of kilometres away from their family, more than seven years ago – for his own good, of course. There are brain injured young citizens who have seen their families at months’ long intervals – because of COVID, of course. There are families affected by brain injury who have looked after their loved ones for years, or for decades, who are investigated and their loved ones made wards of court, taking away any say the family might have had, based on the Lunacy Regulation (Ireland) Act 1871 – in their best interest, of course.

I wish they were but not all fears are born of fatigue and loneliness.

I will start wearing sunscreen. I will get more calcium, I will stretch, sing and floss.

I will keep working on Desiderata – something that is needed and wanted. Desperately.

Tomorrow will be a better day.

“If Easter says anything to us today, it says this:
You can put truth in a grave but it won’t stay there.”

Clarence G. Hall

These days, it seems to be mostly a day of indulging in tons of chocolate, chasing Easter Bunnies, and searching for Easter Eggs.

In my mind, today is the day that gives hope, more than any other day. A day that demonstrates, if that was necessary, that “you can cut all the flowers but you cannot keep spring from coming” (Pablo Neruda). A day that proves that “life never ends and love never dies” (Kate McGahan).

The BBC has an interesting website dedicated to the story of the Passion in which they discuss many aspects of the event, the way it was documented, and its many different themes. They conclude that “the final theme of the passion is victory – the victory of Christ over death – and this is why the Passion story is inseparable from the story of the Resurrection”.

I agree.

For me, the story of the Passion and Resurrection is also a lesson for life. It reminds me that even when injustice is at its worst, when you are at your most vulnerable, people laugh and spit at you, when you are stumbling on your way up to Golgotha, there will always be people who will offer you support, even take that terrible load off your shoulders when you fall. You might not just fall once or twice, you might fall many times. But you will always get back up. Because you know that at the end, of course, there is not death but life. Because love never dies.

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A few great and funny things happened during the week.

First there was the good weather changing everybody’s mood. The sun was out again. The sky was blue again. And the temperatures went up.

Have you ever seen a seagull getting a bit of heat by sitting on the roof of a car parked under a great blue sky? It happened right in front of the An Saol building during the week. We all had a great laugh. Why resting on the waves, in the cold Irish Sea, if you can sit on a different Blue: a clean, warm, bright new Ford?

Pádraig tried out an enhanced version of the handshoe mouse we had bought last summer, conceptualised, invented and realised by a really bright, enthusiastic student who has come up with great ideas to support Pádraig’s access to technology.

Pádraig is well able to click the three buttons on the mouse, but he has problems at times leaving his hand on the mouse. So that brilliant inventor student added the handshoe to the handshoe mouse.

He also designed a mouth switch – several switches mounted on a kind of mouth guard or retainer. That was a great idea because Pádraig has no problem moving his tongue thus accessing the switches is easy for him.

Unfortunately, it took Pádraig no time to dismantle the switches. We’ll be working on refinements.

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There is a great air of enthusiasm around. Maybe it has to do with the time of the year. Maybe it has to do with Easter. Maybe it has to do with the fact that after night comes day; after winter comes summer; after a fall, you get up and keep going. You can (try to) put truth in a grave but it won’t stay there.

Happy Easter.

Donkeys are magic. Not just on Palm Sunday.

It’s what we told our kids and it’s what they shared with their friends when they were small. Surprisingly, none of their friends were aware of this magic cure.

Believe it or not – it worked wonders for our kids. A cut on the finger? – “Donkey, donkey, donkey, donkey, donkey,…” And away the pain goes. A bump on the head? A stomach pain? A sore knee after a fall? – The “Donkey” did the trick.

Maybe Jesus knew about the magic donkeys can do when he sent a couple of his disciples to fetch him a donkey for his entry into Jerusalem on Palm Sunday, the beginning of Easter Week, the beginning of the end. And then the new beginning.

The highlight of the past week was Pádraig getting his first vaccine against COVID-19. Nearly everybody around him had long been vaccinated because they were ‘frontline healthcare staff’. Those living in residential care homes had been vaccinated independent of their age. Now the Irish Health Services Executive, HSE, is working their way down the list by age.

Everybody we talked to, and we talked to many people, saw the issue of young, very vulnerable people, living at home, falling between the ‘cracks’ of this system.

Nobody was in a position to do anything. It seems that ‘systems’ cannot be adapted or changed or fixed by individuals applying common sense.

Until one person came up with what one of my heroes, Martin Naughton, once described to me as an “Irish solution to an Irish problem”.

Pádraig, like Martin did and many other members of Áiseanna Tacaíochta do, runs his own company to recruit and employ his carers. So he is a the “Manager of Service”, a frontline healthcare worker. Agreed, registered, called, vaccinated.

I am still wondering, why Germans will never come up with such a solution.

I am convinced Pádraig was repeating “Donkey, donkey, donkey, donkey, donkey,…” in his mind last Thursday when he got the vaccine. He made it very clear that while he was all for it, he did not like it and it did hurt. There is nobody I know who had more needle encounters than him. Hurt works by association. I hope that the donkey diversion did the trick.

It all happened during the week we had some great sunshine encouraging the cherry blossom in our garden to really show off against the blue sky. It looks that beautiful every year but for just a very short time. A week or two, maybe three. It’ll just take a night of strong winds to blow the blossoms out of the tree and to make room for the next cycle, green foliage.

In the meantime, we are enjoying this miracle of nature and absolute beauty.

Of course, not all that happened was beautiful. And while I agree with what Edith Eger wrote in her books, i.e. that we should not allow ourselves to remain prisoners of what circumstances or other people throw at us, this can be difficult in practice.

“Here you are! In the sacred present. I can’t heal you—or anyone—but I can celebrate your choice to dismantle the prison in your mind, brick by brick. You can’t change what happened, you can’t change what you did or what was done to you. But you can choose how you live now. My precious, you can choose to be free.” 

Maybe this is what repeating “donkey, donkey, donkey, donkey, donkey,…” does: taking the attention away from the hurt, setting you out on the way to dismantle fear, getting you out of that prison in your mind, and, ultimately, setting you free of what circumstances and others are trying to impose on you.

Jesus had a choice. He went for the donkey.

Are you up for the Challenge?

You can make it happen with an iron-will.

Thanks to a few friends, we are nearly done with the preparations. There is a poster (see above), a website, a GoFundMe site and a few other items ready to go. We have a core group of friends each of whom have committed to get a group of their friends to join and encourage them to spread the word to their friends.

When I shared the idea with someone the other day they said, “it’s called a pyramid scheme“.

I suppose it’s a good thing in this case. Because we want as many people as possible from all over the world to participate and show the world that they are up for the challenge.

I still need two more friends who are ready to take part and who would commit to get (at least) five of their friends to join the challenge. If you’re ready to do that, please let me know. It would be great if we could go truly global!

Look at it as an opportunity to join what’s going to be the most amazing event.

We will set up everything this month and start building up support in April. The challenge itself will run from 01 to 30 of May.

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I was looking the other day for information on client-driven service evaluation. And I found this table relating to Case Management in Health Services comparing client-driven and provider-driven models.

I could not believe that this is decades old and seems to describe a well-known models. It describes nearly to perfection the differences between the model we want to follow with An Saol and the model we suffered in the past. No need to re-invent anything. But a need to implement.

Sometimes it’s good to go back to the literature.

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We are still trying to identify the best access method for Pádraig to different types of gadgets: for communication, environmental control or just fun. We have tried different manual system and electronic switches connected to different apps and computers. We have even experimented with headsets trying to track electronic signals from his brain.

Over the last few weeks, a brilliant student from UCD introduced me to a revolutionary form of mouth switches. There was a prototype-model he had designed. And there is a highly sophisticated model being designed by a new startup in the US.

The Smart Mouthware device is designed to allow the user to control a computer or a phone with their tongue.

Interestingly, it is often the tongue that patients exiting from   an unresponsive wakefulness syndrome (also still often called a persistent or permanent vegetative state) can first move purposefully.

Another discovery we made was that in many cases people who have very restricted controlled movements, will no longer need to purchase expensive eye trackers but will be able to use apps taking advantage of the highly sophisticated cameras built into the latest released of the iPad Pro and the iPhone. These cameras can track head movements and ‘translate’ them into mouse movements on the screen. In order to ‘click’ they can detect different facial expressions such as sticking out your tongue or blinking with your eye.

Incredible advances are being made in terms of how services are being delivered and how technology can be used to support people with significant disabilities.

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It is absolutely brilliant to have the An Saol Rehab Centre in place to connect the research and these phenomenal technological advances with people whose life will be changed by this connection beyond recognition.

An Saol puts the ‘survivors’ into the driving seat. It puts the concept of a person-centred approach as promoted by the HSE into practice: “focus the delivery of services and supports on the person and how they want to live their life”.

It supports the UN Convention on the Rights of Persons with Disabilities (UNCRPD):

• • • Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons;
    • Non-discrimination;
    • Full and effective participation and inclusion in society;
    • Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity;
    • Equality of opportunity.
      (from Article 3)

States Parties shall take effective and appropriate measures, including through peer support, to enable persons with disabilities to attain and maintain maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life. To that end, States Parties shall organize, strengthen and extend comprehensive habilitation and rehabilitation services and programmes, particularly in the areas of health, employment, education and social services. (extract Article 26)

We need to do more than advocacy and more than providing traditional provider-driven and clinically-oriented therapy services. We need to change the way they are delivered to make them work long-term, in the community, and supported by a person-centred plan.

As the National Framework for Person-Centred Planning points out wisely it is paramount that —

this plan is put together by a planning team that includes the person for whom the plan is made and who owns the plan; a person to support the owner to put the plan together and into action; the family (if that is wanted); and other people who provide support from time to time, who might be a therapist, a nurse, a psychologist, of a social worker.

We know what needs to be done. The challenge is to make it happen. We will.

“Got your mind set on a dream, you can get it though how hard it may seem.”

Jimmy Cliff

I hadn’t listened to Jimmy Cliff for a while and nearly forgotten about the movie and the album that made him famous: The Harder They Come. The movie and the song are a bit revolutionary from today’s perspective, looking back the nearly fifty years to when it was first published (1972).

Well, they tell me of a pie up in the sky
Waiting for me when I die
But between the day you’re born and when you die
They never seem to hear even your cry

I don’t want to make it more complicated than it is, but, to be honest, I went back to Jimmy’s album looking for another song, Many Rivers to Cross.

Many rivers to cross
And it’s only my will that keeps me alive
I’ve been licked, washed up for years
And I merely survive because of my pride

Much less revolutionary, a bit more sentimental and downtrodden. – Anyways.

Last week was a great week. On Tuesday morning, a journalist and camera man from Nuacht, the Irish-language news programme, came into An Saol and put a news clip together, that was shown the same day on RTE One, Ireland’s main TV Channel, and on TG4, Ireland’s Irish-language TV Channel. – Here is the clip, with subtitles supplied by us.

 

When the clip was done, we learned that Peadar, the presenter, knows Pádraig from way back before the accident. I don’t know why, but it hit a nerve, memory, visions, and produced a deep sadness. There are moments that can hit hard, even when I’m full of energy, positivity, and pride.

And then, a few days later, a therapist working with Pádraig, had the idea to try out something new. Take 1.

 

As you can see, Pádraig responded to the challenge.

And then he showed us that he is up to take on the game. Take 2.

 

I tried it myself and, while I won’t show you the video (I have some pride left), I can tell you that it didn’t go as well for me as it did for Pádraig.

Next Wednesday is St Patrick’s Day, Ireland’s National Holiday.

I will never forget the 2014 St. Patrick’s Day when we decorated Pádraig’s hospital room in Hamburg and turned the ward green. Those were uncertain, threatening times. Nobody knew back then whether Pádraig would ever be able to eat, drink, smell, taste, stand, understand, see, read, communicate, make decisions for himself or be able to get out to meet his friends or watch movies and enjoy concerts, never mind travel, ever again.

How far he has come. He even inspired the An Saol Foundation and its NeuroRehab Day Centre in Santry, now welcoming clients for more than a year – and that in these difficult COVID times.

As most other things these day, the 2021 Festival will be mostly virtual (see the festival’s website).

We’ve got our minds set on a dream,
and we can get it though how hard it may seem.

We still have many rivers to cross. We will. Because we’re Dreamboaters.

Lá Fhéile Pádraig sona duit!